Life with the Ferrells

Cute jokes

2012-01-25T10:55:00.000-05:00

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Translation: "Where does the king keep his armies? Up his sleevies!"

"Why did the banana go to the doctor? Because he didn't peel good!"

"How do you keep a skunk from smelling? Hold his nose!"

"What's brown and sticky? A stick."

6 years

2012-01-20T21:19:00.001-05:00

My dearest Emma,

I don't quite know how to explain the past few years with you other than saying how thankful we are that God has chosen us to be your parents. You are an incredible person. You are fun and sweet and adventurous and utterly hilarious.You are such a joy in our lives.

You are a people person to the core. You come home each day with a backpack full of drawings that your classmates made just for you. It is impossible for you to walk through the halls of Talbot Elementary without someone saying "Hi Emma!" I watch as random kids who are 3 and 4 years older than you take the time to talk to you and pick your little body up for a hug. There are several teachers at the school who stop to tell you "hi" and give you a hug. You are a magnet, my precious girl. There is something about your magnetic and joyful personality that draws people to you.

I have often watched you from afar and wondered what it was about you that drew so many people from all walks of life and so many ages to want to be your friend. And I realized that it was your ability to love anyone, no matter how they act...to accept the unacceptable, no matter the complexities of their tough backgrounds...to smile with each encounter, no matter how tough of a day you are having. We could all learn a lot by imitating your love for others.

This year has been a good one for you. You love being a part of the school you have essentially called "home" ever since Abby has been here, and you adore your teacher and classmates. You are doing well in school...learning to read with better fluency each day and enjoying showing off the math concepts you are grasping.

You are still a fashionista when it comes to clothes and hair. The only times we really butt heads is when you are tired or when you complain about what you are wearing. If it were up to you, fancy dresses and trendy clothes would be worn each and every day. This is unfortunate with a strict dress code at school, and we seem to argue about different ways to make your school uniforms more fancy and acceptable in your eyes each day. Its infuriating some days, just so you know.

But all in all, you are just a fun kid to be around. Smart and witty and loving. We are so very blessed to have you in our lives, my Emma Elizabeth. I love you, sweetheart. Happy 6th Birthday!

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South Pacific

2012-01-17T21:48:00.002-05:00

I couldn't sleep last night. Well, that's not entirely true. I think I did manage to gain some fitful sleep for a few hours, but it was one of those nights where the alarm clock becomes your worst enemy and object of worry as you watch the sleepless minutes tick away into precious time lost that you know will be biting you in the bodunkadunk the next day as you try so desperately to not eat your children. What? Don't all mothers eat their children when they are in rotten moods? Please tell me I'm not the only one.

Realizing that my feet were freezing and not wanting to get out of bed in search of socks, lest I wake even more and lose even more sacred snooze time, I tried desperately to play the little game of "try to stick the ice cubed toes under your husband". Its an art, that game...one that requires total strategy of trying to warm up the feet while keeping the husband asleep. I think my longest time was about 3 seconds max of full foot coverage under one of his toasty legs before he would stir and grumble, at which time I would instantly pretend I had been asleep all along by grumbling something equally incoherent back into his general direction. I'd give it a couple more minutes before trying again. Repetition and refining of the skills paid off, and it was no time that the tootsies were no longer frost-bitten. But it did nothing for my insomnia.

Knowing that insomnia usually happens to those who have copious amounts of information clogging up their overflowing brains, I incredibly have never really had trouble sleeping. I wuv to sleep. Sleep's my fwiend. I can be constantly thinking about appts and tests and bills and ballet and school and soccer and this and that and your mother, and I can still sleep like a baby. But throw in an upcoming, once-in-a-lifetime trip to an exotic land with volcanoes, hammocks, leis, coconut bras and grass skirts, and I can not seem to sleep for all the excitement.

Jay and I have been planning a vacation for just the two of us for...well...as long as we have been married. We set aside money each month in those first few years when he was in grad school and I was working and we was po'. We were going to Jamaica! And then we had good friends get married in a distant state...and then other good friends get married in a distant state, and the Jamaica fund started fresh once again. And then there were kids...and diapers and formula and ear infections and runny noses. And a house. And a van. And a new air conditioner and hot water heater and dishwasher and furniture and carpet. And hospital stays and medical bills. Have you ever seen the Disney movie "Up"?

After over a decade of marriage, our hopes for a "just the two of us" get-away seemed out of reach. But then some amazing things happened...Nate started improving enough to where we felt comfortable leaving him for a few days, and we got word that Jay had a meeting in Hawaii. "Meeting" as in "only one of us will have to pay for a plane ticket and the hotel is covered" type of thing. Ka-ching!

So after giving her a crash course in everything medical that could almost gain her a full-time nursing degree, my mother agreed to come and stay with the kids for the week that Jay and I will be basking in the Hawaiian sun. She should get some sort of medal or something. Or have a psychiatric exam. I'm thinking the latter.

We'll be leaving in t-minus 17 days. And I have exactly that much time to tone these flabby arms and perfect my hula...and find a coconut bra. Or get a psychiatric exam. I'm thinking the latter.

(And these pictures have nothing at all to do with Hawaii, but I hate leaving posts without pictures.)

Moments that make our trips to Texas so special...

2012-01-16T21:53:00.000-05:00

We often take friendships and relationships for granted. Due to the hustle and bustle of our everyday lives, it is rare that we stop and think of the incredible blessings called "friends" that God has gifted us. They listen to our grievances, hold us up when we are down, and bring laughter to each day. They feel our heart aches and experience our joys. I am in constant awe of how we have been blessed with some incredible friends through this journey. For them, we are thankful.

Houston: Days 2 and 3

2012-01-14T14:55:00.000-05:00

The drive out of Houston is always difficult. As I head east, passing the towering skyline of this Texas metropolis, the drastic range of emotions from the week always seem to hit. I bounce between the sadness of leaving the company of the dear friends I love so much there to the excitement of seeing my husband and girls as soon I arrive at home...the exhaustion of talking into the wee hours of the morning each night against the adrenaline of driving home...the extreme sadness at the realization of the medical complexities that encompass my son against the elation of the turning points in treatment options we are given to hopefully give Nate the best life he can have. The drive out of the Houston city limits is always difficult.

This trip was encouraging, for the most part. We seemed to have reached an amazing turn of events in the mito world, as there are numerous treatments and meds on the horizon for this disease to potentially improve quality of life. This is the first time in Nate's life that I have been excited and confident in the research and treatments that are at our fingertips. At the same time, going to Houston is always a difficult eye-opening experience as we are made aware just how complicated Nathan is in a medical sense. This disease has wreaked havoc on his tiny body, and that sobering realization just hits us every once in a while.

It was good to see our mito neurologist again and the gals working in the clinic. They are all so dear to our hearts. Dr. Koenig was very pleased with how Nate looks right now. She said that at this point, his body really needs time to recuperate and feel good and told me that we should not change any of his maintenance medical care (wean down oxygen, etc) for at least 6 months. His body needs to rest and continue to do so with the added support we are giving him. He needs to stay looking this good for quite a while before we are able to start decreasing some of his care. That burst my bubble quite a bit, but I understand what she is saying.

She is still a bit interested about the disease involvement in his liver and still wants to do a liver biopsy at some point, checking for mitochondrial depletion syndrome. She is going to try to get their GI docs to do this when he is under for the heart testing/possible repair, but it may be difficult to arrange both procedures together. I honestly am not too concerned about his liver just yet. Sure, he has random elevations in his LFTs and other strange labs pointing to liver disease due to his form of mito, but they do not seem severe in nature yet. I do wish we knew why these labs seem to fluctuate so much.

A good thing is that she does not think Nate has scoliosis, but is labeling it "functional curvature". It is what his body is doing to adjust to the stimulator and should improve as he grows bigger. That makes a lot of sense and is encouraging.

After the appt, she walked Nate and I down to meet and talk with the head of the peds GI team there. He wanted to see Nate and talk about the gastric stimulator. We talked for quite a while while Dr. Koenig wrangled with my energetic kiddo and tried to keep him out of trouble. It is always so wonderful seeing her interaction with these kids. She is so good with them. Nate loves her so much. Anyway, I had a great conversation with the GI doc about the stimulator, and he is very excited about this new treatment. This has definitely been a life changing treatment for Nathan, and Dr. Koenig kept remarking that she has never seen him look this good from an energy and pallor aspect. It was a good day all around.

We saw our mito immunologist the following day. This doctor is perhaps the best hugger in the whole world and has a fun sense of humor. I wuv her and always enjoy visiting with her a bit. Shortly after coming into the room, she started feeling around all of Nate's enlarged lymph nodes. You see, we have realized over the past few years that every time one of his lymph nodes swell, it never goes completely back down like normal. It stays a bit enlarged. He has several of these shotty nodes all over his body and has new ones enlarged every time we see her. Its strange, and we have no idea why it is happening.

Another weird thing we realized this trip is that Nate has abnormally elevated dr+ T-cells and has an additional strange finding with his double negative T-cells. Dr. Pacheco said that while she is not too concerned at this point, all of this is very odd and may be the reason behind the enlarged lymph nodes. She ordered more testing this week and may send some testing to Cincinnati soon to try to help determine what is happening with his immune cells. There are always more questions than answers in relation to his medical oddities. I wish we knew more about what is truly happening in his body.

Anyway, it was a busy week with a lot of information to process. I look forward to the day when we go to Houston and come home without the burden of processing new findings. The little guy did so well all week. He had a blast playing with all of his little mito friends and was so sad to leave them. He looks forward to spending time with kids who are just like him...kids used to tubes and oxygen and feeding pumps and lab work and countless hours logged in waiting rooms. Kids who have parents with bags under their eyes and perpetual worry lines in their face. Kids who understand the hardships of each other's lives and who are resilient enough to still laugh and play amidst everything.

These kids are pretty amazing.

Houston: day one

2012-01-11T16:43:00.000-05:00

When talking to a friend last week, I mentioned that one of the hardest parts of coming to Houston was that they seemed to always find something with Nathan that we were pretty oblivious to beforehand. That is both difficult and rewarding. Difficult in that sometimes ignorance is bliss. But rewarding in that some of the times, there is something we can do to help correct or lighten the problem and hopefully improve Nate's life even more. This trip has proven to be no exception to that thinking.

Our team at Shands is wonderful. They are amazing people who love Nate and take incredible care of him. But, they don't understand mito well. That is no fault to them. Understanding comes largely from experience, and they simply lack the patient load with this disease to give them more experience. That is why we continue to trek the long miles west to Houston every few months to see the doctors in the mito clinic. Due to the fact that they see an abundance of patients with mito day in and day out, they are very familiar with the strange aspects of this disease and how better to treat it. In addition, they have the ability to conduct ground-breaking research that is helping others understand the unique aspects of mito. It is simply an incredible place to bring Nate, and we feel very blessed to have had the opportunity and ability for him to be a patient in these clinics for the past 2-1/2 years.

Nathan saw a new cardiologist here on Monday. He has been followed by cardiology at home and had regular ekgs and echos done that always have shown trivial abnormalities but nothing to cause concern from our home cardiologist. However, when talking about Nate's symptoms and his unexplained need for oxygen, our new cardio in Houston had an idea of what may be causing his respiratory distress symptoms when off O2. He performed an echo looking specifically for a PFO (a form of an ASD), and that is exactly what he found.

PFO (Patent Foramen Ovale) is a hole between the left and right atria of the heart. This is a natural hole that everyone has while in the womb, but it usually closes up shortly after birth. In about 1 in 4 people, this hole does not close. In most cases, the hole causes no problems or symptoms whatsoever. However, there is a risk that unoxygenated blood from the right atrium could shunt into the oxygenated blood of the left atrium and then circulate into the body. It has recently been found that this stress on the body of patients with mito can be quite dramatic. Their bodies have a hard time dealing with the normal stresses of life, and the additional impact of this type of ASD can cause symptoms in them that are not often seen in the normal population of people with this type of heart defect.

So, we will be coming back to Houston the first week of April where Nate will be put under anesthesia and his new cardiologist will perform a bubble test to determine is there is any right to left shunting happening through Nate's ASD. If that is the case, he will go ahead and close the defect then through a femoral catheterization. If he does have the shunting, this could be the explanation of why his work of breathing is so much harder when he doesn't have oxygen supplementation. This could be the answer to the question we have asked for 4 years. If there is no right to left shunting, we are back to square one on trying to figure out his breathing abnormalities.

But this is exciting knowing that there is potentially something we can do to help him. We want so badly for Nate to come off the oxygen for at least a good chunk of time during the day. If the ASD repair is warranted, we could potentially start weaning him down from O2 in 6 months. The cardiologist said that he was making no promises that this would fix Nate's oxygen requirement, but it might help. And, closing it could most definitely prevent the increased risk of strokes associated with this type of defect. Although it is always hard to know that the little guy needs more procedures, it is exciting that this is something that could make his life so much better.

And to further the info from this visit, our cardiologist diagnosed Nate with moderate dysautonomia. It has been no surprise to us that the little man has autonomic dysfunction, as doctors have mentioned it a few times over the past couple of years. The autonomic nervous system controls your involuntary actions...heart rate, respiratory rate, digestion, perspiration, salivation, etc. Dysautonomia is a malfunction of the autonomic nervous system. Symptoms can be quite varied and can range from extremely mild to debilitating. Nate has always dealt with several of the symptoms associated with dysautonomia, which is caused primarily by his mitochondrial disease, but we have never done anything to lessen his symptoms.

This doctor said that Nate's autonomic symptoms definitely warrant treatment at this time, not only to help curtail a lot of the unpleasant effects of this condition, but also to hopefully keep them from progressing to a higher severity. He started him on florinef to increase the blood volume by increasing the amount of sodium in the blood. It can potentially cause some hefty side effects, so we are going to watch him closely and get labs done in a few weeks to make sure his body is responding well to this new regiment.

So, a lot to process that first day. We were in the cardiology clinic for 4 hours on Monday, and we were both physically and mentally exhausted that afternoon. It was pretty cool though to see the effects of Nate's gastric stimulator on his EKG...every 4 seconds, there would be quite a few really quick electrical pulses on the paper from his stimulator. Anyway, we will be back in 3 months for the bubble test and potential ASD closure.

Updates on the following 2 days of appts will come later...and pictures of Nate and a few of his little mito friends from this trip. We've been fortunate to have appts on the same days as some of our friends. Such a fun time hanging out together!

A red letter day

2012-01-06T13:11:00.001-05:00

Yesterday was an incredible day...long and exhausting, but pretty incredible. Nate had back to back appts with our surgeon and our neurologist, and with the neuro appts being notorious for taking fo-flippin-evah to be seen, we logged in a little over 5 hours at our med plaza. It was one of those days that we have every once in a while where it hits me that my son is such an amazing trooper. He hung in there for several hours without complaint or whining...granted, he slept for a couple of hours, but I was pretty proud of the little guy at the end of the day.

When I think about the appts he had yesterday, I just smile. I've mentioned lately that the little man is doing amazing right now, and it was great to see the reaction of both of his doctors yesterday when they witnessed the exact same thing. From an outward view, Nate is literally doing better right now than he has ever done. I mentioned to both of our doctors yesterday that we are having to learn how to parent a boy right now. Nate has always had days or times where he feels great and has good energy, but they were always very short lived. We were mostly used to an energetic kid one day and then the same kid laying or sitting around all day, being very low-keyed for a few days. Lately, he has had incredible energy day after day, and we are trying to figure out how to parent a rough and tough, tumbling, rambunctious little boy now. I love it. Its amazing what good nutrition and not feeling so sick all the time has done for him.

It was great to see our surgery team again yesterday. Nate was funny and ornery and active and just full of life around everyone. He truly loves our surgeon and his entire team...literally jumping up and down with excitement when I tell him he has an appt with him. We found out yesterday that Nathan is the youngest patient ever in the US to have had a gastric stimulator placed. (In Europe, one has been placed in a 2 year old, but Nate is the youngest here.) I am constantly amazed at how God continues to bless us with amazing doctors who are on the cutting edge of information, research and treatments, giving Nathan a remarkable quality of life amidst his struggles. This stimulator has been life altering for the little guy.

It was good to see our neuro again as well. And it was really great to witness his reaction in seeing Nathan as he proclaimed that he has never seen him look this good and be this strong. Nate jumped into his lap with my phone in hand and proceeded to show him several funky pictures of me that Nathan and I had taken when bored one day and altered with a fun app. You know, pictures of me with a big nose or square head or bugged eyes. Its actually quite fun to take hysterical photos of yourself when you are waiting to pick the kids up from school. Doesn't everyone do that? I was also quite fun to witness the chuckle from our normally straight-faced, proper neurologist.

We did discuss Nate's poor reaction symptomatically and metabolically to anesthesia each time he goes under and some of the abnormal labs the little guy has right now, but all of those concerns will be addressed at our upcoming mito appts in Houston. Our neuro did confirmed that Nathan seems to have scoliosis. It is something we have been aware of for the past few weeks through PT, and we are working at trying to strengthen the little guy's trunk as best as we can. Nate has always been weakest in his trunk, so we knew that this was a possibility, but we did not expect him to start exhibiting curvature this soon. We wonder if the weight of the stimulator and the fact that he seems to guard it a bit is causing the shift?? Regardless, there is not much we can do right now other than try our best to help strengthen those muscles.

So, it was a good day...a good week. Nathan and I will embark on our journey to Houston tomorrow morning. I enjoy taking this trip with him. He's my good little traveling buddy. We look forward to seeing the docs in the mito clinic and spending good quality time with several friends.

Christmas trip

2012-01-05T11:11:00.000-05:00

Our 2 week jaunt up north to visit our families for Christmas has come and gone. It was such a wonderful trip of getting away from the hustle and bustle of our life and enjoying some much needed down time and moments with our extended family. The kids had a blast playing with their cousins and the family animals. The weather was gorgeous almost the entire time. In fact, the kids were quite disappointed when they realized that it more than likely wasn't going to snow. Nate kept saying "but its Christmas! It has to snow on Christmas!" It did flurry for a little bit a couple of days after Christmas, so at least the kids were able to catch a few flakes on their tongues.

Nate's little vocabulary seemed to blossom like crazy over the break, and he has gone full force into the "never stops talking" phase. Its quite comical. The other day, he told me that I couldn't call him Nate anymore. (Yeah right. I named you, kid.) He said that instead of Nate, I could call him "cranky pants" or "scooter head"...except that he can't say his s's at all, so that last name turns out to sound quite inappropriate. It makes me laugh every time he says it. That's obviously the middle school humor in me.

In all honesty, the little man has been doing amazing lately. Simply incredible. In fact, he is doing better energy wise than he has ever done. I can't even describe our excitement in seeing him excel and look so good day after day after day. This is something we are not quite used to with him. It's such a blessing right now.

But, it wasn't a quintessential long trip up north without a trip to some form of urgent treatment...this time, it wasn't for Nate. Abby, who was finally fever free when we left for Kentucky, never really perked up like she should have after several days of antibiotics. After a couple of days of being there and looking quite puny, she spiked another stubborn fever. A trip to urgent care revealed that her pneumonia was still in her right lung and was also infiltrating in her left lung as well. A stronger antibiotic was added, and she finally started kicking that nasty bug a couple of days later. Poor kid was pretty sick for a couple of weeks. But she was quite relieved when she was well for her birthday.

So, all in all, it was a great trip. We miss everyone, and it was so good to catch up on visiting with those we don't get to see very often and meet our gorgeous new nephew, Hunter. The long road trip prepared Nate for our next long trip in a couple of days, where he and I will embark on the next adventure to Houston for a few days of appts with our docs in the mito clinic. I think we'll be traveled out after that trip.

8 years

2011-12-28T09:01:00.000-05:00

My dearest Abigail,

8 years old. You turn around twice and 8 years pass by. I can remember being pregnant with you like it was yesterday. I remember the first time our eyes met and the first time I held you. It all seems like it just happened.

You have grown so much this year in so many ways. I love hearing you describe different things that you have read or learned and almost be able to see the wheels in your brain turning. You are so smart. It amazes me to see how your mind works and how you are constantly thinking about how the world works. I love watching you grow in knowledge.

You still have such a sweet heart. You hate to see others in stress, and you always try to cheer people up when they are down. Your love and care for Nathan is unlike anything I have seen. You have a special bond with him and take it upon yourself to make sure that he has everything he needs. You are such a good big sister to Emma and Nate.

Your are an amazing girl, Abby. You have a wonderful heart and are a really special kiddo. I love you, my sweet Abigail Nicole. Happy 8th Birthday.

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Christmas trip phonetopraphy, round 1

2011-12-24T11:31:00.001-05:00

My little dancer

2011-12-15T20:22:00.001-05:00

The craziness of wintertime

2011-12-14T22:32:00.000-05:00

So, Abby has pnuemonia. So much for whatever I had being seemingly non-contagious. It seems that a potent, nasty virus has invaded this house, and we really, really hope it left after Abby. Whatever this is seems to camp out as a high fever and invade the lungs. Out of everything we have had the past few years, I am the most concerned about Nate getting this bug. We are supposed to leave for our long northern bound Christmas trip this Saturday, and I am really nervous about what may lie ahead for us. I really hate feeling like the other shoe is about to drop.

Abby is now on a good antibiotic and hopefully will break this stubborn fever soon. We are also doing regular chest percussions on the poor kiddo because her xray also showed atelectasis. Hopefully she will be back to good in no time. Although watching TV a lot more than usual is a blast, she is sad that she has missed out on this final last week of school before the Christmas break.

In an ironic twist, Nate had a regular follow-up appt with his pulmonologist today. We absolutely LOVE his pulmonologist, and although the little guy was a bit cranky from a lack of a nap during the visit, it was a good appt. It was also really great to finally meet the new chair of the department and talk extensively about all the weird ins and outs of mito with him. Like all the rest of our docs, he was great! I am always impressed with our doctors' inquisitive natures and zeal to learn about mito disorders, especially the ones here new to Nate (there literally aren't many we haven't seen at some point before), and therefore fairly newish to mito disorders...especially the disorders with Nathan's presentation. We left once again thankful for the amazing doctors employed by our children's hospital.We have such a great team here.

I also picked up some labs when I was there that the little guy had done last week. His lactate was normal once again, but his pyruvate continues to be quite high. I don't think Nate has had a normal pyruvate in all his life. His liver labs were elevated...in addition to him having some random issues with hypoglycemia lately, I am not surprised that his liver may be struggling a bit more lately. In conclusion, his IgG is once again low, and he seems to have lost most of his response to his pneumococcal vaccine once again.. Even though we know the little guy is struggling in different ways, it always seems to be more apparent when we get his labs back. But even amidst it all, the Nafey boy continues to do well. He's hanging in there...eating more than he has in quite a while and still quite energetic. These are times where I am glad that we look at the patient and not the lab work in regards of treatment. I really hope and pray that he can get through the wintertime without problems with illness that can quickly set him back.

Tebowing

2011-12-11T21:22:00.001-05:00

Nate made it on the website tebowing.com: http://tebowing.com/post/14019734545/tebowing-for-a-cure-with-his-stuffed-puppy

Its pretty neat to see him on that site, and I do have to admit that he is purdy darn adorable with his little Tebow puppy.

Who turned the calendar to December?

2011-12-09T23:00:00.001-05:00

Its kinda funny when you are in the smack dab middle of the intense craziness of the holidays and your body decides to throw a monkey wrench in every single one of your plans in the shape of something called pneumonia. Seriously. How in the world does a healthy 30 year old contract pneumonia completely out of the blue?

It was a tough 5 days of a fever that was beyond intense at times and a cough that continues to tone these "post-3 babies" flabby abs, but I can now say that I have survived the worst illness of my entire life. Literally. And I learned a lot during those few days...like it is imperative that you keep an empty bladder when you are coughing up a lung, and that having all of Nate's medical equipment around can be helpful to others than just him, and that I married the absolute most amazing man in the whole world who held down the fort and did anything in his power to keep me comfortable. Well, and if you have to cancel plan after plan after plan for a few days, it will all still be okay.

The great thing is that this pneumonia does not appear to be viral whatsoever, so that means that the kids are safe. I do admit that I was pretty darn worried Nate would get this before we knew what it was. I knew it would more than likely be disastrous if that happened, so I was relieved to find out that he should be safe from it. Now, to find out how I all of a sudden succumbed to the lung infection. Obviously, we don't do medical stuff by the book in this hood.

We have one more week until our annual trip to Kentucky (and Ohio this year), so we are in the countdown of preparing for that long trip. The kids are beyond excited about getting up north and seeing all of their extended family and hopefully snow!

We had the entire month of November off for doctor appts for the little guy, which has been such a welcomed relief lately. It was so nice to have such a long break. We've had 3 appts scheduled here right before the holidays, and we have 2 appts the week we get back home right before we head to Houston. Last week, Nate saw our surgeon and his team for an adjustment to his stimulator. It was the first time we have seen them since his last surgery, and it was so good to see everyone again. Nate had a lot of fun wearing his Halloween costume to the appt. The adjustment to his stimulator has helped him eat a bit more along with getting his tube feeds, so we hope this will help bump his weight up again.

All in all, Nate is doing extremely well. He is doing better right now than he has in a very long time, and it is so wonderful to see him like this. He just feels great. His energy levels are good more often than not now, and he just seems so happy right now. I pray it lasts for a really long time and that he isn't hit hard this winter with illness. The next few months always have us on edge when it comes to him getting sick.

The last week of school offers a lot of fun activities for the girls, and they can't wait for all the fun festivities to get here. It will all be over before we know it. I still can't believe it is already December and Christmas is around the corner!

Party like its 2011

2011-12-05T09:02:00.001-05:00

We had a slumber party last Friday night for Abby's 8th birthday. Due to the facts that her birthday is 3 days after Christmas and that I'm just not a party planner, the poor kid has never had a friend party for her birthday. We had a blast trying to plan the activities for her slumber party, but I became a little panicked about what I had undertook the closer the day of the party came. What in the world was I thinking having 10 second graders (and Emma) over for a slumber party?

But it really was a blast! The girls all had so much fun spending that time together, and they were all so very well behaved and sweet to each other. I have quite a few pictures from the wild and crazy night that I need to edit, but here is a little sneak peek of the fun times they had:

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It's beginning to look a lot like Christmas...

2011-11-30T21:21:00.001-05:00

Thanksgiving Day

2011-11-29T21:13:00.001-05:00

We drove a little south for Thanksgiving so we could spend the day with my grandparents and extended family. I have such fond memories of running around their yard barefoot with my cousins each Thanksgiving, sneaking off behind our Great Grandmother's house to pick oranges off the neighbor's orange tree, suck the honey out of the hibiscus flowers, climb the gorgeous Oak trees in our Great Grandmother's front yard, and race one another by running the length of the yard on top of rolling cable spools. Those were some fun times.

The older one below was my partner in crime growing up. We always got in trouble at some point, and our grandmother would make us sit in the livingroom and read the bible when we fought with one another. She taught me how to clean pig pens and help calm down a steer. We always talked about sneaking out at night on an adventure of running through some neighboring orange groves, but we never did it. She was my closest cousin in age and friendship. I sure do love this gal.

It was so good to be back here for Thanksgiving. It was good to hear my grandfather's heartfelt prayer and remember back on the past few years of family gatherings. It was a delight to watch our children play with my cousins' children and form those relationships and long-lasting friendships while sharing with them our own stories of when we were their age.

The little guy was a bit off that day, sleeping for a good portion of the visit and just being pretty low key. He did perk up the last 20 minutes or so of our visit, but he missed most all of the fun with all of the cousins. He just didn't last too long playing.

It was a wonderful day of family fellowship and reflecting on the blessings that have engulfed each of our lives not only this year, but for the past several years.

Thankfulness

2011-11-22T20:28:00.000-05:00

He rustled a bit in the covers as I peeked around the crack in the door, confirming my suspicions that he was indeed waking from his nap. I crept up to his side of the bed, ducked my head under the top bunk, and was greeted with a sleepy smile and arms outstretched. As I snuggled in on the wall side of the bed, he wrapped his soft, skinny arms around my neck and pulled me close until our foreheads touched. I brushed the tip of my nose across his cheek. Even after almost-4 years, his skin is still so soft.

"You're my snugglebug. Snuggle, snuggle, snuggle." he uttered as he somehow inched his tiny body closer to mine. It's a ritual, these few minutes of cuddle time when he wakes. Oh, how I wish I could bottle up that feeling, those smells, the emotions of that special time together. That love.

Lately, my thoughts have often gone back to those first few months of his life. He was a little over 2 months old when our neurologist took account of his symptoms and instantly said he thought our son had SMA (a neuromuscular disease with usually a very short life span). Our world seemed to crumble for a while surrounding that appointment. It was our first realization that Nathan's serious symptoms weren't transient like we had hoped, that he was more than likely facing something that would dramatically affect his life, and that his life was indeed in jeopardy. Thankfully, we realized a few weeks later that Nate did not have SMA, but those terrifying few weeks were our induction into the fear of wondering what our son may face due to the genetic defects of his body.

To say that we were scared and heartbroken those first couple of weeks after that initial neurology appointment is a vast understatement. I prayed for God to heal Nathan's broken body. But in those same prayers, I would beg God that if it was his will for Nathan to die early and be completely healed in heaven, that he would take him quickly...soon. They were the hardest words I had ever uttered, and the prayer was two-fold...

At that point in the overwhelming information and emotional overload of the new medical world we had entered, I was horribly frightened that Nathan would suffer through the durations of his life with the frailties of his body. As parents, we automatically want to protect our children from the pain and sufferings in this world, and it was excruciating knowing that I could not protect my son from his genetic flaw. But what I didn't know then was that my views and expectations of the "suffering with a disease" I had imagined were skewed by fear. Yes, Nathan's life is different. His body does not work like it should, he lives with daily pain and discomfort, and he is not able to keep up with kids his age...but, he is not suffering. He is living...and living happily, joyfully, and full of zeal and laughter and enjoyment. Simply put, his life is amazing. That was something I could not foresee during those grueling first few weeks of his life when everything looked so grim.

But the main reason for the difficult prayer was sadly a purely selfish reason. The little guy who I had carried inside of me for 9 months, and who I had held in my arms for a few weeks, had stolen my heart like all of our children do. When we were told that his life could be shortened, I was literally afraid to love him anymore than I already did. I was afraid to love something so dear to me that could be taken away, and I knew that I could not protect my heart from loving him more each day. I had no idea that amidst the difficult, painful, and arduous circumstances that encompassed my son's life, that he would grow to show honor and glory to our God each day through his multiple trials and tribulations on this earth.

"Heavenly Father, please heal my son's body so that he may live a long life. But if that is not your will, please take him. He is your child. I freely give him back to you." That was my heart-wrenching prayer during those excruciating first few weeks of Nate's life.

And in response, God spoke to my heart through his word with instructions to trust him: "O taste and see that the Lord is good: blessed is the man that trusteth in him." Psalm 34:8, to know that he was always in control: "the Lord is in his holy temple: let all the earth keep silence before him.” Habakkuk 2:20, and to give him honor and praise and gratitude, even through the hardest of trials: "O give thanks unto the Lord, for he is good: for his mercy endureth for ever." Psalm 107:1

This year, I am thankful that God hears our prayers but does not answer some of them. I am so very thankful that our omniscient God knows every intricate detail of our lives and how to lead us through the mountains and valleys. I am thankful that while he has not taken away Nate's disease, he has given us the tools and attitudes to live a joyful and fulfilling life amidst the trials we all have been given.

I am thankful for today...that I can kiss my husband when he gets home from work each day and hug my girls before they walk into school. I am thankful that we have been given the gift of not taking these precious years together for granted. And I am thankful for the little fingers that still wrap around my hand, for the little brown eyes framed in beautifully long eyelashes peering into my own eyes, for that coarse, brown hair that I love to run my fingers through, for that smell...however metabolically smelly it may be at the time, for the sword and gun fights, and for the belly laughs that I can't get enough of hearing. I am thankful that God knows the course our lives will take and how to prepare us along the way. I am thankful for the knowledge that God is on his throne and forever in control.

"O give thanks unto the Lord, for he is good: for his mercy endureth for ever." Psalm 107:1

November

2011-11-18T12:31:00.001-05:00

The girls have been super busy this week with all kids of activities as we make the whirlwind round of activities to wrap up the end of the year. Thankfully, 2 of Nate's appts scheduled for this week were canceled and rescheduled, freeing up some much needed time to shuttle the girls around.

Both girls have been in an after school program one day a week at a local church with quite a few of their friends. They have had a blast in this program the past couple of months, as they work on crafts, snacks, and a little play/singing performance. Wednesday night was the big night of the performance, and both girls were giddy with excitement all week long leading up to this night. It was so much fun watching them sing and dance in front of the audience.

I know I say this a lot, but they are getting so big! That fact stops me in my tracks every once in a while as I see them tackle so many circumstances with maturity and less need for help.

Emma's Thanksgiving feast with her kindergarten class was yesterday. We had the same feast with this teacher 2 years ago when Abby was in her class, so it was fun to be able to participate with the adorable pilgrims and indians once again.

Emma has a really great class this year. Being able to volunteer for a few hours each week, it has been such a joy to get to know the little personalities of the kids in her class. And it has been an even greater pleasure to see her grow intellectually and develop unique friendships throughout the year. I often wonder what these little kindergartners will be doing 20 years from now. I can't wait to find out.

I love this kid

2011-11-13T20:36:00.001-05:00

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An update

2011-11-09T23:58:00.001-05:00

I have figured out that "down time" just doesn't happen when you have 3 active kiddos. We are busy...really busy...but its a good busy. Just when certain extra-curricular activities end, they seem to be replaced by some other avenue that keeps us running around like crazy. Unfortunately, the incessant "going" coupled with the time change has worn on the little guy lately, so I am hoping that we can get things to slow down just a bit to accommodate his long nap schedule once again.

I love this time of year. Thanksgiving feasts at the girls' school, shopping for Christmas gifts, birthday cupcakes and pajama days at school, and our big 2 week trip up north is all coming in the next few weeks. I can hardly believe it...nor am I ready for it in the least!!

As for the quintessential update, everyone is doing well. Abby had an awesome report card, incredible end to her soccer season, and is looking forward to being 8 years old in a little over a month. 8. Seriously? 8?? She still reigns supreme as the first-born pleaser. Barring all the incessant 2nd grade humor that isn't funny whatsoever, this gal is a pure delight.

Emma is her sweet ole' stinker self. She is such a sweet heart and so well-behaved at school. She is reading like a champ now and really excited about learning anything she can get her hands on. She's still absolutely hilarious and quite a stinker at times. That kid can go from making me laugh to driving me crazy in about 1.28 seconds. She's one of a kind. And she will be 6 in two months.

The little guy will be 4 in almost three months. Seriously. Where have the past years with my little baby gone? He has demanded that we stop calling him the "baby", to which we have sadly obliged. But he's totally right...he's not a baby at all.

The little man is doing well. He has adjusted to this permanent stimulator well. We have an appt with his surgeon next week, where I think he *may* need a little adjustment to get the little guy to eat more, but he is doing really well overall with very few of the symptoms of gastroparesis that he used to encounter each day. He still gets at least half of his calories by tube feeds, but he is tolerating those quite well. This stimulator has been truly life altering for Nate.

We rescheduled his appts in Houston for January and were able to add one more appt for the week...for a cardiologist specializing in autonomic dysfunction. This doctor has found some interesting information regarding certain mito patients, and we hope that he can play a huge role in Nate's care as well. Specifically, we pray that he will be able to explain to us why Nate's body responds with exhausting retractions, tachypnea, and metabolic acidosis when he is off his O2 for a prolonged period. Its a phenomenon that has had so many of his doctors baffled his entire life but willing to give their theories to why these symptoms occur. However, if testing can show that it stems from a cardiac issue, there is the potential that it can be corrected. And if it can be corrected, there is the potential that Nathan can come off his extra O2. I can not explain how incredible this will be if it is the case. Equally, I can not describe how hard it is to not get our hopes up that a "quick fix" can get rid of his extra tubes. We are so optimistic but trying to be realistic at the same time. But our prayer is that this cardiologist can help Nathan. We'll know more after our appts in January.

So, that's about it here. Nate has an appt with surgery next week...pulmo and GI next month, with neuro following closely behind. And then lies the marathon of appts with the docs in Houston. The little guy and I will leave the week after we arrive home from our Christmas trip and be gone the full 2nd week of January. Although it will be a hard and long trip out there, we will have the wonderful privilege of reuniting with a few of our very close friends while there. We can barely wait!!

Yes, it will be a busy few months around here.

Memorizing those teeny tiny voices

2011-11-07T10:57:00.003-05:00

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Halloween 2011

2011-11-02T23:29:00.000-04:00

It was most definitely a day to be remembered...or yet, a few weeks to be remembered. Halloween just seems to be that way for us at this time in our lives. I have yet to write about our fun adventure to the Mickey's Not So Scary Halloween Party the weekend before Nate's big surgery, where all of the kids dressed in their costumes and smiled their biggest smiles throughout the night at Disney.

And we can't forget the trunk-or-treat fun the kids had when all of these pics were taken. It is an annual tradition at one of the churches close to our house, where a whole lot of the kiddos' friends all come out dressed to the hilt for this fun night.

This year is the first in about 3 years that at least one of my little hooligans didn't have a fever (knock on wood or whatever may work in this situation) this time of year. Therefore, we met some good friends in one of the coolest neighborhoods around for some stellar trick-or-treating! The kids had a blast! And I totally didn't bring my camera for that night of adventure.

This was the absolute first year that all three of the little munchkins totally "got" the adventure and fun of trick-or-treating. As a parent, it was so exciting to see them run from house to house without having to prompt them on what to say and when to say it. They are getting so big. All of a sudden.

Natester hung with the big kids for a few houses before he was pretty gassed. He then had the luxury privilege of riding in his cool stroller for the rest of the hour and a half the other kids proceeded to run across the neighborhood while we trailed behind. They were even so confident as they visited the cool haunted house in the neighborhood and popped their little eyes out of their heads as someone ran toward them with a loud chain saw. It was quite hysterical, if I do say so myself.

It was a fun night...well, a fun few weeks, since they have worn their costumes quite a few times already. These are just some of the days that create lasting memories.

How to carve a pumpkin

2011-10-31T22:49:00.000-04:00

Tebowing

2011-10-29T22:50:00.001-04:00

A craze that has hit the likes of those from Florida to Colorado and every where in between

A childhood rite of passage

2011-10-28T21:38:00.000-04:00

Do you ever wonder why hotel rooms are so expensive? Is it the lush bedding, miniature shampoo bottles, or curvy shower rod that makes it seem like there is more space in the shower than normal? Is it the incredible view of the parking lot, the 2 creamers they include in the coffee packet, or the fact that you can sleep under 10 pounds of covers and keep the room as cold as you want without having to worry about the increased electric bill?

No. No, it's not. The reason hotel rooms are so expensive is mostly due to our family. Or at least families like ours.

A couple of years ago, we were staying at a really nice and new hotel outside of Macon, GA. Thanks to some Marriot points, the whole stay was completely free. Sah-wheet! Only, about 2 hours past lights-out, Emma crawls on her hands and knees and starts puking all over that nice, plush bedding. And then Abby starts the every hour of upchuck. And it wasn't long before it hit me as well.

Due to the ill state of every little thing about me, along with the somnolent effects of phenergan, I don't remember much else about that stay...only that I was completely confident that anyone within a 1/4 mile radius could smell the odors seeping from the cracks of our room (it was that bad!!) Well, and that my dear, well husband went to Walmart and bought gatorade and saltine crackers for our 4 hour drive home...and apologized to the front desk about the state of our room.

And remember, thanks to good ole' hotel points, we didn't pay a penny on that room.

Yes, we are the reason hotel rooms are so expensive. If I was the owner of the Marriot in Macon, GA, I would have burnt that room...perhaps even the entire hotel...and started over.

Our most recent stay in a hotel wasn't quite as "adventurous". However, within 5 minutes of putting the bags down in any room we are staying, the kids seem to have this unrelenting desire to jump from one bed to the other. Maybe it is because we don't allow this at home...maybe it is because they are so excited to be somewhere else...I don't know. What I do know is that I remember having this exact same uncontrollable desire to jump from one bed to the other in hotel rooms when I was little. It is most definitely a childhood rite of passage.

Wordless Wednesday: Fall Festivities

2011-10-26T20:35:00.000-04:00

Random thoughts of a tired mind

2011-10-20T20:53:00.001-04:00

I've had either a little virus or a rather small alien attacking my voice box over the past week. It has given me that deep, sexy smoker's voice most of the week that has come in real handy when the kids are in trouble. They seem to respond quicker to a deep voice. I've felt fine...just a raspy voice and the feeling that I have been run over by a Mack truck. I can't tell if the incessant exhaustion is from the cold or from the fact that abundant sleep has been pretty scarce over the past couple of months. Its amazing how little sleep you can get by on when you are stressed out...and how much your body craves that rest when the stress load minimizes.

Seriously though, I have felt like a walking zombie most of the week...or a teenager. They're kinda the same thing, if I remember those years correctly. I have adopted the 80-year old ritual of tucking myself in each night by about 9:00 and have used the cheap babysitter of DVR to my napping advantage more times than I care to mention this week.

Living life a bit on the edge last night by staying up past my new bedtime, I met an out of town friend for coffee at 8:30 last night...decaf coffee. Meeting at a spot close to the university, we were easily the oldest people in the building by about 8 years...and the placed was quite packed. The surrounding conversations consisted of mid-terms, weekend parties, and which dorm that so-in-so from economics lives and how it is so much cooler than "our" dorm. Man, did I feel old.

I was about half an hour early for our coffee date, so I listened to a lot of conversations surrounding me in the mean time. They were all pretty comical. It was quite entertaining hearing the running commentary of the brand new "adults" who sat close to me. Undergrad students are at such a tough age...old enough to make life changing alterations and decisions, but young enough that they are mostly still under the ultimate direction of their parents. Old enough that they are experiencing life's trials and triumphs on their own, but young enough that they still mostly have a net to catch them when they fall. I sat there wondering what these youngsters would be thinking and talking about 10 years from now.

Thinking about those college students a lot today, I realized that my daily thoughts and actions are all over the place most days in my life...wondering why my girls like to keep their favorite undies tucked away inside shoe boxes tucked in their dresser drawers to quickly panicking about not paying Emma's ballet tuition and realizing that my best friend already took it by for me and will remind me when it is due again (seriously, the gal has reminded me when it is time to pay numerous tuitions for various "things" the past few years, and I don't know what I would do without her!). Remembering to wipe the floor beside the toilet due to the young "poor aimer" in the house to getting excited about plunging through the box of candy I hid from the kids on top of the refrigerator. Stacking today's bills on top of the rest that need to be paid and writing a note to "pay bills today!!!!" to wondering what funny face we are going to create when carving our pumpkin this weekend.

I find it enlightening and a bit comical how much 10 years will change you in your youth. As a society, we don't see much difference between the ages of 70 and 80 or 80 and 90...but contrast that to 10 and 20 or 20 and 30, and that is seemingly a world of difference in age. I can't imagine how these college-aged kids will be when my kids are inhabiting the seats that they now inhabit.

Home

2011-10-15T20:21:00.001-04:00

Snuggled in between the two side rails of his hospital bed today, my little man snuggled tight against my left side and rested his head on my chest. "I yuv you, Mama!" passed from his lips as I could feel his rhythmic heart beat against my ribs. Unusual tears filled my eyes and spilled over, and all I could do was barely whisper an "I love you too" back.

I am not an overly emotional person. I do not cry on a regular basis. I don't know whether that is good or bad...it's just a fact. I know the stress...the statistics...the pain...the real circumstances of our life as a family...but its just "part of it" to us. I rarely get overly stressed out or emotional anymore.

But there is something about being in the hospital, especially for an extended period of time, that seems to make those tears flow a little freely. I think most of it stems from the lack of sleep and excessive stress...it just puts you over the edge. But part of you looks around at the beige walls, stale curtains, bio-hazard containers, and incessant alarms at all hours of the day and night and wonder "what happened?" And when you get to that point in your stay, its nearly impossible to keep the tears from flowing.

As the girls were all snuggled under the covers with Nathan in his hospital bed today while we were awaiting the discharge papers, Abby asked an inquisitive question: "How many times has Nathan stayed here?" We've been to our local children's hospital countless times...literally, I could never remember how many times we have gone for appts, tests, labwork, and admissions. But for how many times he has been "admitted" to our hospital, the answer was 11 (I think)...and 6 within the past year. We now know most of the nursing staff and everyone else on our favorite "side" of the floor. That definitely makes the stays a lot more comfortable. We have been blessed immensely during each and every stay we have had to make there.

Its the little things that make the stay monumental...one of our favorite med students seeing a guy dressed as Buzz Lightyear and specifically asking him to visit Nate...one of the front office clerks requesting that the Florida Gator sports players see Nathan and then repetitively talking about how fun his reaction was when seeing the college students...one of the food service gals peeking her face in with an everlasting smile and greeting to the little man each time she passed by his room...therapy dogs coming for a therapeutic pat on the head...personally made smiley-faced bandaids on old IV sites. Its the little things that mean so much.

Most of the nurses we had this visit were regulars that we have had before, but there was a brand new one we had for 2 days that we instantly fell in love with...she will go far in this profession. She instantly molded into our family of sarcasm and fun and spent a good amount of time tickling and playing with Nathan. The PCAs were equally important, as they brought a special spark and love into our room each time they visited.

And we can't forget the entire surgery team that came to see the little guy each day...a team of professionals that we have dearly loved all summer and enjoy each encounter with them. Our surgeon wore a special character tie specifically for Nate yesterday (like he promised him)...a Hulk tie, since the little guy is so into superheroes right now. You can't help but love a doctor who emits laughter from your child by repetitively attacking the kid's face with his Hulk tie...that is someone who truly understands "pediatrics" and how to win the hearts of his patients. We are exceedingly thankful for our team here.

Nate is home tonight. He woke with great energy and little pain. I always know that it is time to go home when he starts to unhook his pulse ox wires and play with the up and down settings of his hospital bed...in other words, when he gets ornery. He walked a lot this morning and visited the playroom twice. Although he was quite exhausted and cranky this afternoon from the morning adventures, it was also a sign that he was ready to be home.

We realized this morning that the little guy's belly button looked rather angry. The resident looked at it and called the fellow, and the fellow looked at it and called our surgeon. The consensus was that we just need to wait and see what it will do. Nate has been on IV antibiotics all week, so either the abx have been keeping the infection at bay, or it isn't an infection at all. Time will tell. The poor belly button is swollen and a deep red color, but there is no puss, fever, or streaking of color, so we were given the all clear to watch it at home.

So, we are home and all the kiddos are tucked in bed right now. The Lord has truly blessed us this week. Its good to be home.

Trucking along

2011-10-13T20:39:00.000-04:00

Its funny how the days of the week all seem to run together when you are in the hospital. Since we are not doing our normal routine of running the girls back and forth to their regular activities, I have to consciously try to remember the day of the week.

Nafey boy is still par for the course of recovery. His pain is getting less and less...Toradol is still being given around the clock, but he has only asked for "the good medicine" (oxycodone) once today. He has done well propped up more in the bed today and even sat upright for a couple of minutes tonight after I gave him a sponge bath and changed his sheets. He was getting pretty stinky. Additionally, he stood a few times today to use the urinal, as opposed to just laying down and going (one of the perks of being a boy). He was quite sore each and every time I moved him and was pretty shaky trying to stand, but he tolerated the changes of position fine.

We started feeds at a really low rate last night and allowed him to eat whatever he wanted by mouth. The food intake isn't going well, as he just doesn't want to eat, but we have been able to increase his feeds nicely today. He had a bit of retching last night after we started and asked or zofran, but he has been fine today. He has said that he feels nauseous off and on today but that it isn't bad enough for zofran. Each time we increase his feeds, we decrease his D10. So far, so good.

For tomorrow, I hope that we can get him up to 45ml/hr in his feeds and then start working on trying to get his bowels moving again. I think he will be ready to walk a short bit tomorrow as well...he needs to work those sea legs. There hasn't been talk about going home yet, but if everything continues to go as well as it is going, I think that we should be home sometime this weekend.

We had a lot of visitors today, so that made the day go by really quickly. Yesterday, a few of the Florida Gators came to visit Nate through a program they have here through the hospital. He had the privilege of talking to a swimmer and football, softball, soccer, and volleyball player from UF, and he is so proud of the posters they gave him. It was so fun to see his face light up when the fella beside him said he played football for the Gators. And it was equally funny to see their reactions when he told them that his stuffed puppy that rarely leaves his side is named Tebow. And today, he had 2 visits from the therapy dogs that he loves so much when he comes here. One was even able to climb up in bed with him, and a photographer for The Post (a magazine for Shands) snapped pictures of their interaction for a good 15 minutes. There is going to be an article on therapy dogs in the next magazine, and I am anxious to see if they are going to use any of the pictures they took of Nate and Rackley (the sweet dog).

So, everything is going well. The staff here is amazing, as always. I am anxious to see how this permanent stimulator is truly working, but I know it will take time and patience.

My little trooper

2011-10-11T22:11:00.000-04:00

Today has been a good day.

I'm tired and a little emotional as the stress of today is starting to have its effect, but today was a really good day. Nathan is doing well as long as we stay on top of giving him pain meds every couple of hours. The poor little fella seems to be in a considerable amount of pain as the effects of his morphine starts to wear off, sending his heart rate soaring and giving him the shakes. Its tough to watch as I wipe his head with a cool, wet washcloth, but his nurses have been amazing at being quick to give him relief. Other than the expected pain he is experiencing, everything has gone very well today. Let me start from the beginning...

We arrived yesterday afternoon, and Nate was so excited to see all of his "friends". As soon as the doors opened onto our floor, Nate ran and jumped into the arms of one of his favorite nurses and started talking his ear off about being at Disney this past weekend. Since it was kinda slow on the floor, he and his "buddy" played superheroes and ipad games in between Chris (his nurse and "buddy") taking care of the needs of other patients. Our favorite PCA was also here, and it was so nice to catch up during the slow times on the floor. I have some really cute pictures of Chris and Jackie playing with Nate that I can't wait to get off my camera when I get home. Other than getting his IV, the little guy had quite a fun time yesterday. The amazing people here definitely make his stays easier.

The attending anesthesiologist came to the room before surgery this morning and spent a good amount of time with us trying to formulate a plan for the anesthesia used in today's surgery. In fact, that was one of many times he came to talk or check on Nate throughout the day...we were thoroughly impressed with him. Due to some bad reactions that were getting worse with each admission, he encouraged us to add sevoflurane as one of Nate's allergies in his medical file...not that he has an actual allergy to it, but that his body definitely does not recover well when it is administered. That's one of the hard lessons we have learned the past couple of months.

This anesthesiologist researched mito and any info on anesthesia in patients with this disease that he could find, and he even tried to call our team in Houston for their input, but they were not able to be reached. His desire to do everything in his power to keep Nate safe and comfortable was heartwarming. We've always had wonderful eagerness and receptiveness from our anesthesia team, but this doctor was even above and beyond what we have previously experienced. He even came by tonight to check on the little guy and tell him "thank you" for being such a good patient. Working with this doctor today was an incredible blessing.

We had a great talk with our surgeon before they took Nathan back to the OR. He said that he recently spoke to the doctor who is essentially the grandfather of these gastric stimulators and was our surgeon's mentor. This ground-breaking doctor in Mississippi implants gastric stimulators in adults, whereas our surgeon is the initial doctor who started implanting them in peds. He said that in speaking about Nathan's case to this leading researcher and doctor in gastric electrical stimulation, this doctor said that he has actually implanted stimulators in a couple of adult mito patients and they have responded very well. That eased all of our minds that Nate was not the first "mito patient" to have this procedure done, though he is seemingly the first child with mito to undergo this treatment. I can not explain how encouraging it is to hear that this treatment has been and continues to be quite successful in a couple of adults with this same disease. Hopefully, Nathan will experience the same results for a very long time.

Surgery went well. Our surgeon tried to do it laproscopically because it is less painful and the risk of infection in lower, but due to Nate's odd stomach angulation and the fact that he is quite a small kiddo, he eventually had to just work through incisions. Nathan came out of surgery and anesthesia better than he really has ever done. Aside from spiking a pretty high lactate on his VBG during the procedure, he did very well.

He's in quite a bit of pain, but our team and nurses have been on top of it all evening. Our surgeon just came by again a little bit ago and ordered more pain meds to keep him comfortable for longer and some IV antibiotics as a precautionary against infection. The little guy has a little bit of a temp tonight, but that could be from the stress of surgery. We'll be here for a few days, it seems. We are taking his recovery slow, as we have seen in the past that pushing him too quickly causes more problems. Hopefully the little man will start to perk up in a couple of days.

Thank you all so much for your prayers. I am constantly amazed at how God blesses Nathan with the amount of strength and courage that most of us can not fathom. Its a humbling experience to see God's grace seeping through the heart of your child. Our sweet warrior is an amazing blessing in our lives.

Friends becoming like family

2011-10-09T22:10:00.000-04:00

It continues to amaze me how God places people in our lives at the perfect times that will become incredibly influential in many aspects of our lives in many different ways...and we don't even realize it at the time of the initial meeting...

At the end of last year, I was made aware that a family that I had kind of known from an online medical forum were coming to our city for an experimental treatment for her daughter's severe gastroparesis. We met and took them from their hotel to their first appt with a surgeon that we had never met or even heard of but would later become an integral part of our son's life...little did we know what was to come.

When the daughter, who shares the name of our oldest: Abigail, was hospitalized for an extended time in January/February, we took the son (Noah) under our wings and into our home during that time because he could not spend the night in the hospital. He quickly became part of our family.

Looking back over that time when the Millers were introduced into our lives, I am amazed at God's hand in our meeting. You see, Abigail was having a new treatment implemented...a temporary and later, a permanent gastric stimulator placed. Her mom and I talked extensively about the ins and outs of this new device and treatment, and we literally walked this journey with them during the weeks they "lived" in our city. Although Nathan and Abigail shared the same diagnosis of gastroparesis, this treatment was seemingly only used on kids with idiopathic and viral-induced gastroparesis at this time, so I knew he wasn't a candidate for it. I never ever imagined that just a few short months later, we would meet the exact same surgeon for a tube placement, and that surgeon bring up the possibility of trialing Nathan with the gastric stimulator. I never expected to have that same opportunity.

Its amazing how God prepares you in intricate ways to tackle the trials of your future.

The Millers made another trip to Gainesville a little over a week ago. Unfortunately, Abigail's permanent stimulator has failed...a physically and emotionally taxing phenomenon that we know can happen for reasons no one truly knows. Our surgeon has said that it seems to happen after a really bad virus or for unknown reasons in his very few kids who have more going on than just gastroparesis (meaning a different disorder is causing the paralysis of the stomach). We know that Nathan is at an increased risk of not responding to the permanent stimulator...or responding for a while and losing that response. This is what happened to Abigail. She initially responded and then lost the response after a few months and after a tough virus.

After implanting a temporary stimulator again to test the response of the leads placed in the mucosa of the stomach as opposed to the outside of the stomach with the permanent placement of the leads, Abigail started responding again. This is the second patient of our surgeon who has done this, and it has prompted he and the doctor who essentially created the GI stimulator to start the works of creating a new permanent gastric stimulator where the leads are able to be placed in the mucosa of the stomach. Hopefully, this new way of placing the permanent stimulator will be in the works in a few months.

Anyway, we had a great week with the Millers. It was a wonderful time of reconnecting and talking about anything and everything under the sun. I genuinely love her kids and enjoy having her, Abigail and Noah here with us. My Abby and her Abigail have become very close friends over the past few months, and Nathan looks up to Noah as a big brother and loves every little thing about him. I thoroughly enjoyed having another mother who understands the details of raising a child with multiple medical complications and "gets" the unusual workings of this gastric stimulator. This week was much needed for both of us, I believe. Please be in prayer for Abigail. The temporary stimulator will only last for about a month before the leads become dislodged, and when that happens, she will have to stop eating again and rely on j-feeds for nourishment until she comes back for another temp stimulator...this scenario will continue until the docs are able to figure out how to create the new stim.

And speaking of this, Nate will be admitted to Shands tomorrow and have the permanent GI stimulator placed on Tuesday. His response to the temporary one has been amazing to witness. We are quite confident that the leads of this last temporary stim came dislodged on Wednesday, prompting his symptoms to come back with a vengeance. The poor guy vomited 4 times on Wednesday and has done the same at least twice a day since then, along with lots of retching, pain and quite a lot of bloating. The sudden onset of symptoms always gives us peace of mind that we are making the right decision for Nathan...its literally incredible to see how well this has worked. We pray that the permanent placement will work just as well.

Octoberrrrrr

2011-10-04T22:30:00.001-04:00

Halloween is always a fun time around our house. Once the magazines start piling up at the first of August, the kids are all on a quest to find their perfect costume of the year.

Like this weekend, we usually try to visit the Disney's Not So Scary Halloween Party one evening to have a fun night of family togetherness. The kids love to dress up for the event and ride all the rides in their costumes. It seems that there are several opportunities for them to be costumed up and having fun over the course of the next month.

Early in the summer, Nathan kept insisting that he wanted to be his surgeon for Halloween. Nate has attached himself to this doctor in a way that he hasn't with any other doctors we have...he simply loves this dear man. I think it is because he gets down on Nate's level and actually plays with him. All of our docs are friendly and sweet, but none treat Nathan quite the way this one does, and it has formed a bond between the two of them.

So, when it was time to order costumes, Nathan flipped right past the super hero costumes and Toy Story and Transformers and said he really wanted to be his surgeon. The outfit was simple enough, except for one special request from the peewee surgeon...that he must have "a beard" (actually a goatee) like his beloved doc. After a little searching, the ensemble was complete. He, perhaps, may be the cutest little surgeon I have ever seen.

This is always a fun time around here for the next month...festivals, carnivals, trick or treating, and the air cooling off just a bit so that it isn't quite so stifling. We are all looking forward to our evening at Disney...a time of fun and carefree attitudes before the chaos of next week unfolds.

Fall season

2011-09-29T20:02:00.001-04:00

Its a crazy dance of running back and forth across the short grass and flailing your appendages in order to hopefully get a funny looking ball into a miniature-sized goal without tripping over your shoe laces and touching anything with your hands. Most people call it football. Weird people call is soccer. (Seriously, why do we confuse our kids by calling this sport something completely different than the entire world calls it???)

It just so happens to be a sport that we devote our fall and spring Monday and Wednesday night evenings to while we cheer on our first born to victory. While Emma enjoys her weekly obsession with dance lessons, Abby chooses her recreation time with soccer. And I LOVE watching her play.

After our first two soccer games being rained out, it was a treat to watch Abby play last night. She has a good friend on her team this year, and the group of girls are really pretty good. And with each new season, we always meet really great families. The faces of our town change so much due to the nature of the leading job markets encompassing this city. It's quite a transient town because of the University, but that always means that there are new interesting families to meet each year. That's one of the reasons I love where we live...not to mention that it has a lot of wonderful extracurricular opportunities as you are raising your family.

Emma Beiber and the Bieberettes

2011-09-27T22:45:00.001-04:00

She's a tween trapped in a 5 year old's body a lot of the time. She has a passion for shoes, clothes, jewelry, and Justin Beiber. She has befriended a 5th grader who provides her with enough Beiber information that would make anyone's ears bleed. Did you know that his favorite color was purple? And that he has put out a perfume? Well, I do...senseless information that is now crowding out all the important stuff that resides in my cranium. I may not be able to tell you where I last laid my keys, but I can for sure tell you that J. Beiber likes spaghetti.

Its so bad that when his face popped up somewhere on TV the other day, Emma literally put her hands on her face and squealed. She has issues. I am declaring that any punishment she should have over the next few months should involve watching copious amounts of Elmo's World. That should equalize her, right?

Mitochondrial Disease Awareness Week: Hope for a Cure

2011-09-23T12:57:00.001-04:00

I can still feel his warm, squishy body against mine...his head laying on my chest. I can hear his adorable little voice singing the ABC song. I miss him.

On this day last year, our precious friend Samuel passed away from complications of mitochondrial disease. My heart has hurt all week thinking about him. And it has hurt even more thinking about his family. Today will no doubt be very tough for them. I wish I could take this pain away from my dear friends.

It has been a hard year for our little mito community. We have lost so many little friends. Its the toughest reality that we all live with...that most of these precious mito kids will not live to adulthood. Its a reality that I hope is changed with our generation. With awareness comes funds, with funds comes research, and with research comes the possibility of treatments and a cure.

I pray that we will be able to see Nathan graduate some day. I pray that he will someday fall in love with a dear woman so that I can cry at his wedding. I pray that he will have the opportunity to carry on the Ferrell name by bringing children of his own into the world. The reality of this disease is tough, but it doesn't mean that we don't have hope. Hope for a cure.

Please pray for the Knight family today and all the other families who have recently lost their children to this insidious disease.

Mitochondrial Disease Awareness Week: how mito affects our family

2011-09-21T20:54:00.000-04:00

"Mom, I think I want one of my kids to have mito when I grow up." It was a statement from my oldest that shocked me as she so leisurely brought up the subject on the way to soccer practice.

"Really? Why is that, honey?"

"Well, because I already know how to take care of kids with mito, and I will love them no matter what is wrong with them. I just think I'll be a good mother to a mito kid." was her sincere reply.

What do you say to that?

Our girls are different than their peers in a lot of ways. In their few short years on this earth, they have carried so much burden that is in direct relation to the life of their brother. We try to maintain as much of a normal family life as we can, but there is so much of their life that is not normal. I can't count how many times the two of them have been shuttled between local friends, church members and family through the many doctor visits and hospital stays Nate has had. There have been many times when a dear friend has had to pick them up from school and take them to their house without me even being able to give the girls' a "head's up" about the change of plans.

They say that kids are resilient. Well, I think that my girls received an extra dose of resilience in their lives, as they have never once complained about the circumstances of their life.

Mitochondrial disease changes the family.

Emma has recently shown an interest in learning how to take care of Nathan. She says to me that "someone needs to know how to take care of him in case you die." Her mental filter hasn't quite developed yet, and she obviously says most that comes to her mind. But I love that she is interested in knowing all the ins and outs of his care. She knows how to give him meds and set up his feed, turn on the pump, and plug his feeding port into his g-tube. She knows that he is on 2L of oxygen and understands which way he likes the cannula to fit on his face. She's 5.

Mitochondrial disease changes the family.

Both of the girls can give a quick lesson that highlights the aspects of this disease. Not only can they pronounce the long name, but they understand about the primary role our mitochondria play in our cells. And from talking to other moms, their friends can give a good lesson on mito as well...which makes me proud of my girls for spreading awareness about this disease behind the scenes. Its a part of their lives, and they are not afraid to talk about it.

Mitochondrial disease changes the family.

"Hun, I know that you would be an excellent mother to a child with mito, but I pray that you never have to be in that role" was my response in the conversation on the way to soccer practice. With as much burden that is already on their tiny shoulders, I am so thankful that they don't comprehend the enormity of stress and heartbreak that their father and I endure on a regular basis by raising a child with mito. Its a role that has strengthened us and taught us exponentially in our daily life, but it is also a life that I would never wish upon anyone.I am thankful that she doesn't quite understand the severity of her brother's disease yet. She's too young to be burdened with our fears of the future.

Having a brother with mito has created a compassion in both of the girls that has been incredible to witness. Yes, mitochondrial disease does indeed change the entire family.

Mitochondrial Disease Awareness Week: September 18-24, 2011

2011-09-19T21:03:00.000-04:00

This is the third Mito Awareness week we have experienced, and it is always quite enlightening to see all of the mito facts and figures that grace the blogs and facebook during this week. This has definitely been an amazing way to bring awareness to a disease that has the same frequency of childhood cancer, yet is still somewhat "unknown". It is something that has affected our lives since I was pregnant with our son, though we didn't know the name of the culprit until he was almost a year old. Its something that affects not only Nathan's life, but the lives of our entire family every single day of the week.

Attached is an updated video of Nathan's life with mito...

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On a quest to be a typical American family

2011-09-13T11:57:00.004-04:00

We are a typical American family...middle-income suburbian family consisting of father, mother, 2-1/2 kids and Fido, the family dog. Well, except that I don't think there is a definition of the "typical American family" anymore...and the fact that we have an extra half of a kiddo running around here. Well, and we have no Fido to grace our home with clumps of hair and pools of saliva on the furniture.

We're not against having pets...we have 3 kids who are as pet-like as they come. Jay and I both grew up with pets and have fond memories of playing with them as kids. They taught us a lot about life and friendship and even the horribly enlightening period known as "being in heat" when we had to run as fast as we could to our trampoline before our English Springer Spaniel would tackle us during the times that she would hump anything that moves. I kid you not. She was seriously confused about her gender and was obviously not privy to certain rude behaviors. She also birthed countless puppies during our childhood, which never came as any surprise to us, no matter how hard we had worked to keep her locked up during her "prime time". This was also the same dog who loved to eat the cats that mistakenly wandered over from the yard of our "cat-lady neighbor".

My goodness, when I think of all this, I can't imagine why exactly I have been depriving my children of such learning adventures (enter tone of sarcasm). But the truth is, we're just not animal people, which I find a little funny because Jay worked for a vet in high school. And my family jumped around from dogs to cats to rats to birds to gerbils to rabbits to ferrets to a baby duck to lizards to fish...taking the whole fam to the zoo was entirely too expensive, so the zoo was brought to us.

When I think about owning a pet now, I have such conflicting thoughts and emotions. On one hand, the smells about do me in, right along with the amount of saliva the beasts produce. My parents have a gorgeous, sweet-as-can-be, large dog who once took a dinosaur-sized poop directly on Nate's oxygen tubing one Christmas when we were all home. This is the same dog who has some of the foulest methane production I have ever experienced...the type that seriously singes the tiny hairs that are supposed to protect the inside of your nose. Mine are still trying to grow back after last Christmas. And as for saliva, I gag at the mere mention of foamy spit. I hate dog slobber.

But we are seemingly having a change of heart when it comes to pet ownership. The kids LOVE Christmastime for reasons most don't...because they are surrounded by pets from both sides of the family on our yearly trip up north. And they often ask to visit the house of our pastor's family so they can play with their dog, who they have nicknamed "the lickinator". Watching their reactions and true joy playing with these animals have softened us over time, but I think the catalyst that truly started to change our minds was learning about Emma's "dead pet" collection. The poor strange kid has started collecting dead insects (cicadas, grasshoppers, worms) and calling them her pets. She houses them in a small, lush bed inside the play kitchen in the playroom and has regular daily conversations with them as if they are alive. Once they start to stink, she moves them to a new home in the garage. Now, tell me that's not pitiful...and almost strange enough to warrant a full neuro examination.

We had a stray dog come the house the other day for a few hours while drooling buckets all over our driveway. The girls immediately sprung to action in giving it plenty of TLC. They simultaneously realized it was a girl because "it has a pink collar" (Abby) and "it has boobies" (Emma), so they named her Ellie. Emma loved on Ellie, gave her water, endured copious amounts slung slobber with each shake of her head, and wept relentlessly when Ellie decided to move on to another location during her jaunt in the outside world. She was a mess.

So, unbeknownst to the little munchkins living under our roof, we are on a quest to find a pet...maybe even a dog. Or maybe a new dead insect. We haven't made up our minds yet. Its a big step...especially since we just got new carpet last spring. We are looking for some species who doesn't shed, doesn't smell bad, and doesn't take big dumps on any of Nate's medical equipment. I'd also prefer something that unloads the dishwasher. Shouldn't be too hard to find, right?

Positive Aspects

2011-09-12T20:55:00.000-04:00

Scouring the internet the other night (read that: vegging on various facebook statuses), I pondered a question that sought genuine answers..."What are some positive aspects of having a child with special needs?"

I found that it was a hard question to answer...not because there aren't positive aspects to this specialized life, but that in our situation it contains way too many of the admirable aspects of normal life to be deemed as "special". If you looked past all his "equipment", numerous meds, the fact that he is the size of kids half his age, and his waning energy level compared to other 3 year olds...well, Nathan is a totally normal kiddo living life exploring and learning and enduring and loving. He is living this life as if he doesn't have a clue that it is indeed considered a "special life". As a carefree preschooler, he is blissfully unaware that he is different. And in a lot of ways, we are as well.

But if I reword the above question to "What would you miss if you didn't have a kid with special needs?", the answers are easier to retrieve...

The obvious first answer is: the numerous people we've met through the unusual circumstances of this life. I feel like I am beginning to sound like a broken record in mentioning how thankful I am for the amazing people who have greatly enriched our lives the past 3-1/2 years...people who we more than likely would have never met if it weren't for Nathan's life. People who we call friends. People who we love. Those amazing individuals have made our lives better in many different ways, and I don't want to imagine our life without those relationships.

But the most influential part about this life that I would miss if it were different is the way it has changed us...how we have grown individually and as a family. We look at life completely differently now than we did before Nathan was born. We have been given the amazing gift of truly enjoying each and every day in a way that most others can not fully understand and achieve. Thinking about the future has been replaced with thinking about the beauty of today and the amazing moments of daily life in our family. That, to me, is the most positive aspect of having a child like Nathan.

And speaking of the little guy, he got home Friday night from a short 24-hour stay in the hospital again. He had a rough week motility-wise with some intense retching, pain and bloating and just not tolerating food or his g-tube feeds well at all. He also couldn't tolerate the large volume of meds that he takes each morning and was vomiting them all back up within 10 minutes of having them placed through his g-tube, despite the anti-nausea meds we were giving him. A quick trip to see our surgeon Thursday morning confirmed our suspicions that one of the leads of his temporary GI stimulator had come dislodged again. Since he won't get the permanent one for another month, we agreed that the leads needed to be replaced.

So, he was admitted Thursday night for overnight fluids, and he went back to the OR Friday morning for the revision. He had a harder time coming out of anesthesia this time around and was horribly combative when he woke. He also had a harder time with nausea and vomiting afterward as well and didn't start to perk up until late in the afternoon. I think that having sevo (one of the anesthetic agents they have used) 3 times within 6 weeks has taken its toll on the little guy, as his response to it is getting worse each time. Hopefully the docs will use a different cocktail of drugs for the longer surgery coming up. Anyway, we were discharged Friday evening. And with the exception of a neuro appt this week, we hope to take a short break from the medical world for the next month. With his surgery and a trip to Houston coming up(as long as Nate is recovering well by that time), October is going to be nuts.

Wordless Wednesday: Labor day...a time for labor

2011-09-07T21:34:00.001-04:00

Morning Mile

2011-09-02T16:33:00.001-04:00

Morning Mile started at the girls' school this week. For each lap the kids make around the disgusting, dew laden grassy mud track (we're currently trying to raise funds for a real rubber track that will be sah-weet if we can get our rears in gear and get the last of the dough saved up), they get a slightly used plastic straw as a counter. 4 laps make a mile, and you get a charm in the shape of a foot for your specialty morning mile necklace for every 5 miles that you run...20 laps. This year, the feet glow in the dark. And since the girls have to wake up an extra 30 minutes earlier just to make it to morning mile, I have concluded that glow-in-the-dark feet are the best alarm clocks around this neck of the woods.

The eagerness of morning mile usually wanes once the mornings become cool enough to be uncomfortable (so usually a little before Christmas), but they are currently loving it. I can't help but adore the school's push to make this form of exercise fun, rewarding, and important. Its amazing to see the numerous kids who get to school extra early just to break a nice sweat while running around a nasty dirt track.

A routine

2011-08-31T14:51:00.006-04:00

School has been back in session for a week and a half now, and you would think that I would have tons of free time now that 2 of the littleuns are gone for almost 6 hours a day. Well, at least that's what I thought would happen...lots of walking around the house twiddling my thumbs, scrubbing the baseboards for fun, and figuring out that there is only trash on TV in the middle of the day. And although I did gawk and totally laugh my rather large backside off while catching a few minutes of the Jerry Springer show the other day as I was folding laundry, these days have not contained any strolling around the house with nothing to do. (P.S. Who knew that Springer still came on daily? I mean, I know we all probably have some Springer action deep in our family roots, but who in their right mind wants to actually be on that show?)
I do have to say that it is so nice to have both girls at the same school with the same hours...there is not nearly as much running around dropping off and picking up as there was last year when Em was in preschool. And we are all really enjoying having a set schedule again. The house is so quiet in the mornings, and it is so much easier to keep it somewhat clean now that there aren't as many people here all day.
Nate has started having to learn to play by himself some...tough for a kid who has had "his girls" at his beck and call so much lately. And I have learned the art of role playing once again as he calls on me so often to play "Old grandpa and doggy" with him being the old grandpa and me being the doggy...can you tell he loves the movie "Up"? Never being that great at improv in drama class, I have restricted this role playing game to just a couple of minutes and only twice a day...and never in public. Nate has agreed to these terms.
The girls are loving school! Emma is learning to eat quicker during lunchtime and trying to figure out who her best friend will be this year. I am anxious to see how she interacts in the classroom and who all these kiddos are who she talks about each day. She really loves being there. Her only struggle these days is picking out what to wear each day, as having a fairly strict uniform policy prevents her from wearing "the most beautiful clothes in the school". Being the true girly girl that she is, she requests to wear skirts most every day, and we seem to always fight over what shoes she will wear. I truly hope that the uniform policy will stay in effect until she graduates from high school.
Abby is also enjoying this year and seems to be in another great class. Even though she is split up from a few of her best friends, she is making new friends and acquaintances really well. She has always loved school, and she seems to do better overall when her mind is constantly stimulated with new information and experiences. The older she gets, the more I am amazed at how her brain works. The only downfall to second grade and "growing up" is that for the first time, my little baby...my first born who used to follow me around like a flea and cry when someone else picked her up, has refused to kiss me goodbye outside her classroom each morning. Oh, the travesty! She'll kiss me if I drop her off in the van, but when I walk her in...nada. And there went my heart.This week started the new soccer season for the oldest, and next week will be the beginning of a new year of dance for Emma, where she will be taking ballet and jazz this year. And just to make our life even more crazy than it currently is, the girls are also in a music/craft/games program for a couple of hours on Wednesday afternoons with a lot of their friends. We seemed to have joined the rest of suburbia with their silly antics of being on the go at all times. No wonder these years seem to fly by so fast.The times we are all together these days are precious. With the few hours of a break from each other every day, our relationships with one another seem better. The girls enjoy playing together again and its rare to hear them fight or become cross with one another. Its easier to be patient with each other again, and the time together seems to be better quality time. Yes, schedules seem to be wonderful things for our family.

A bathless summer

2011-08-26T20:04:00.005-04:00

In the past 3-1/2 years, we have never had the chance to be excited or hopeful about any of the medical aspects of Nathan's life. When you hear such things as "no cure", "progressive", "degenerative" and "life shortening" attached to the diagnosis of your child, it's difficult to be encouraged by medical interventions. We don't have a treatment that will keep the disease tolerable, nor a drug that will put it in remission. We simply treat each symptom as it surfaces, throw supplements and cofactors in that we hope will help in the long run, and pray that better treatments or a cure will happen in the lifetime of our children.

Its the life to which we have become accustomed to, but there are still times where it all seems too overwhelming to process.Even though no 2 kids with mito are the same, the treatment options and plans seem to follow the same route. Each medical intervention to give help and relief to your child is met with heartbreak at the realization of what has been lost. Its hard to be hopeful in these circumstances.

So when our surgeon presented a potential new treatment for Nate a few months ago, it was the first time in quite a while that I truly felt excited and hopeful about this intervention in the life of my son. The question was if it would work.

Nate is doing amazing...simply amazing. He feels great, has incredible energy, and is eating more than he has ever eaten (on top of still getting a ton of calories through his tube feeds...he has a lot of catch up growing to do). This GI stimulator has truly been life-changing for him, and it has been incredible to witness this transformation.
We know it works, but we really wish we knew why it works. The inquisitive part of me has an innate desire to know why things work, so it has been difficult knowing that we simply don't have the data or research showing us how and why it works exactly. The docs and researchers are fairly confident that it changes something in the interstitial cells of cajal, which are the cells found in the GI tract (esophagus, stomach, small intestine, and colon) that are the pacemaker cells of the gut. I find it no coincidence that these cells also con tain an abundance of mitochondria (usually meaning that the function of the cell requires a lot of energy) and to quote this journal article, "mitochondrial Ca²⁺ handling may underlie the dependence of gastrointestinal pacemaking on oxidative metabolism." In my very unprofessional opinion, I wonder if dysfunction in these cajal cells are truly the catalyst behind mitochondrial disease-induced gastrointestinal dysfunction and failure, especially since they work as the intermediaries between the nerve cells and smooth muscle cells in the GI tract. As these cells succumb to apoptosis, it seems that the gut will lose its pacemaking abilities, thus creating the failure to move food through.

And to further that thought process, I wonder if the high frequency/low energy stimulation Nate is receiving from this device could be reducing the workload of his mitochondria in his cajal cells, thus decreasing the oxidative stress in these cells and allowing them to perform more optimally. If this is the case, the patient would need to still have a good amount of cajal cells for it to work, as they know through past biopsies that the stimulation does not work if the cells are depleted or severely low in number. Obviously, these are just theories circling around in this rattly ole' cranium of mine. We need research...we need understanding.Pending insurance approval (this is a very, very, very expensive device that will be implanted internally...think in the ballpark of a Hummer with blinging rims and a deafening sound system), Nate will have the permanent GI stimulator placed on October 11th. The device will lie in a subcutaneous pocket in the abdominal wall, and the leads will be screwed into the stomach muscle.

Right now with the temporary stimulator, the leads are screwed into the mucosal lining of the stomach, but since food hits them and there is so much movement at that part of the stomach, the leads migrate and come loose easier...thus the reason why it is a temporary placement. The leads of the permanent one will be in a place where this shouldn't happen, although due to this, the response of the stimulation usually takes a lot longer than the temporary one, and it isn't usually quite as effective. He more than likely won't get as good of symptom control and treatment as he is currently getting with this temporary stimulator...but it will still be a whole lot better than it was before. Its another one of those questions that don't have answers to yet...why does the temporary vs. permanent placement of these leads give varying reactions? Hopefully we can get answers as research continues and tailor the treatment as we know more.
This summer shall be known as the summer when Nate didn't have a real bath for a full 2 months. Believe me, that kid can have all kinds of funky smells emitting from his body. It will be nice to plop him in a sudsy bath again and give him a good washin'. There's only so much you can do with sponge baths.

But I also hope that when we look back over the past few months, we also realize that it is the summer where Nate made a turn-around. I pray that this treatment continues to work and that my little man continues to improve and can get several more years of use with his stomach and intestines. We have been blessed with many incredible opportunities in regards to Nate's medical care, and we are abundantly thankful.

Kindergarten

2011-08-22T08:35:00.004-04:00

My dearest Emma,

You popped out of bed with a smile on your face the moment I stroked your cheek to wake you for this big day. You were so excited! You quickly dressed, tried your new backpack on, and ran to check your new look out in the mirror. I have to admit, you were mighty cute.

Your goal this summer was to drink as much milk as you could so that you wouldn't be the smallest kid in kindergarten. I'm not so sure you succeeded, as you looked so tiny walking through those halls to your new classroom. You said you were nervous, but it never showed at all. You walked with an incredible amount of confidence as we dropped Abby off first and then made the trek to your class.

You knew exactly where to place your lunchbox, and you found your cubby to hold your backpack. While sitting quietly and thumbing through a book, you looked up at me one last time and smiled your squinty-eyed smile. I look at you so often and still see you as my baby girl, but this morning, I realized how old you have suddenly become.

You are pretty amazing, my sweet Emmabear. You have the innate ability to adapt to any situation you are in with such an amazing attitude. You tackle these big milestones with ease and are excited about the adventures that lie ahead with each new step in your life. Your laid-back personality makes walking this journey with you so much easier on us as well. I know you are going to enjoy every single aspect of this time in your life. These are some of the best days! I love you, Em. Happy first day of kindergarten.

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Link to Abby's first day of kindergarten this time 2 years ago: here.

In review...

2011-08-21T16:00:00.006-04:00

As we approach the evening on the last day of summer break, its impossible to understand how quickly our summer has passed. Those emotions are duplicated each and every year around this time as we buy copious amounts of classroom supplies, set backpacks beside the door, and lay out brand new clothes and shoes for the first day of school. Summer break seems to always speed by at record levels, and this year was no exception. But despite the obvious "big" things we experienced this summer (Marco, grandparents, and quite a few days in the hospital), we had a lot of little pleasures that filled our summer days the past couple of months...We got a lesson in why it is never safe to stand near a cow when it raises its tail. One kid was completely grossed out by the reasoning behind the "raised tail", where the other two hooligans thought it was mesmerizing and totally cool. Life in the country seems to be so much more interesting and educational than life on the culdesac.
We perfected our cannonballs, pencil dives, and belly flops. Emma perfected the art of swimming in the deep end without the need of floaties and worked hard on her pirouette dive.
The girls learned to spend copious amounts of time with each other with minimal fighting most days...well, some days...well, every once in a while. They also realized that in order to be lipstickless once again, it would require the removal of several layers of skin via a good ole' fashion scrubbin' by the mama.
We were entertained by the colossal-sized edible growths on the ends of Aunt Bethany's phalanges. Each child erupted in a series of gags and highly dramatic sounds of disgust at the insistence that they taste the fun, edible appendages. What kid doesn't like black olives? Obviously all of mine.
We enjoyed a much-needed girls day overlooking the Atlantic...
...and we tried to dig a hole deep enough to send Emma to China. The only thing that stopped us was her unusual inability to breathe while being completely encased in sand. Well, and the hot molten lava that is seemingly at the core of the earth. She would have loved China. Maybe we'll try again next year.
The littlest Ferrell ended his 3-1/2 year run with the highly addictive act of sucking on a pacifier. He decided to drop it cold-turkey, mainly due to the nationwide shortage of paci patches that would have made his detox prolonged but a bit easier. The first couple of days were met with the tough withdrawal symptoms of tears, regrets, and pleadings for "just one more time". But I am proud to say that the little guy stuck with it through the toughest times and is now a full 2 weeks sober.
We watched copious amounts of TV through the summer, much to the chagrin of the mother who had a clear set of TV-time guidelines at the beginning of the break that was quickly thrown out the window. Through the wonderfulness of Netflix, the chilrens learned to love the old school cartoons of Popeye, Inspector Gadget, and Ghostbusters.
We have one tree in our yard. One little lonely tree in the front yard. But that tree has been the playground to 2 little monkeys most evenings after dinner, after it has cooled enough to be outside without succumbing to heat stroke in 2.3 minutes and before the hoard of mosquitos decide to feast on anything that has a heartbeat. That gives us about 13 minutes outside each day. Summer in Florida is like winter up north.
It was a good summer. Stressful at times, but we had great company, some relaxation, and good memories created that will last us through the craziness that will engulf our life over the next few months as school and extracurricular activities commence once again.

Yes, it was a good summer.

A mini Doogie

2011-08-16T22:47:00.002-04:00

He's made the unconventional trade-off from long, white coat to wife-beater and undies, but I dare say that he has one of the best bed side manners around...

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And life blows by

2011-08-14T20:59:00.003-04:00

In one week, we'll once again walk to halls of our local elementary school, waving to friends and acquaintances while catching up with the latest tales of summer vacation. The familiar smells of construction paper and glue will remind us of days past, and we will once again be giddy with excitement and anticipation of the year ahead. We are used to this scenario...but this time, it will be different.

This year, as I walk my oldest daughter to the second grade building, we will take a small detour while dropping off her little sister to her kindergarten class. This year, everything will be different.

Emma feels like she owns Talbot Elementary School already. She has spent a good fraction of her life mingling within the beige colored concrete walls, as we have tried to be apart of the school as much as possible in the past 2 years. She was 3 years old when she started trying to keep up with her sister and all the other big kids as they participated in the morning ritual of running during the school's "morning mile". A tiny 3 year old, whose itty-bitty legs could barely run one lap...yet a determined toddler who continued to try to keep up with the rest.

As a 4 year old, she carried Abby's backpack on her back all the way to her big sister's classroom most mornings...trying so hard to look like she belonged among the grade schoolers. The bottom part of the backpack landed under her rear as she wore it on her back, and it was always quite comical to see her trying to act so old.

And in one week, she will walk the corridors of the school she has known and loved for 2 years...only this time, she will indeed belong there. She will walk her tiny self into a classroom she is already all too familiar with and into the arms of a teacher she already loves, as she has been blessed to have Abby's kindergarten teacher as well...the one she has begged to have for the past 2 years. She will soon be indoctrinated into the land of fiskar scissors, lined paper, PE, and centers. She will soon realize how quickly she is required to eat at lunchtime, thus practically starving for the first month of school...if I know my extremely slow eater at all. She will soon make new friends and learn new rules and feel so much older while walking through the halls with the "big kids".

My little Emmabear will soon be a kindergartner.

So why can't I get the image of her chubby-cheeked babyness out of my head?

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The little things make the biggest impact

2011-08-12T14:13:00.009-04:00

I was talking to a dear friend today about going through times in life where we are bewildered and a bit disappointed about the difficult paths we sometimes have to encounter...wondering why it is seemingly God's will for us to have to face some of the obstacles and trials that we really don't want to face. But we both ended the conversation talking about the amazing blessings we had received going through those trials...the way we have grown, the way we have changed, the incredible people we have met and the blessings they are in our lives...Right before Nate was being wheeled to the 2nd floor for his procedure early this morning, one of those "incredible people we immediately fell in love with on this journey" popped into our room with flowers, cupcakes, and a precious heart-warming card as a birthday gift. My heart was swelling with love and gratitude and my face was lightened with a smile as we wheeled my little-un to the pre-op holding area.When we came back into our room a few hours later, a sweet hand-made sign was taped to the wall by another one of our favorite nurses wishing "Happy Birthday". I can't even describe how wonderful it felt to look up at that sign every few minutes and know that our dear friends there took the time to make this day special. It meant so very much to me. These incredible people, who we wouldn't have the wonderful privilege of knowing if it weren't for this crazy journey we are on, made this birthday one that I will never forget. I am so thankful for each and every one of these precious souls.Nate did great today! The procedure was very quick since they knew exactly where they needed to place the leads this time. The great thing is that the last 2 times he has gone in the OR, there were no additional cuts to be made...they have merely used the preexisting stoma from his g-tube to place the leads. I have nothing but great things to say about our surgery and anesthesia teams. They know Nathan quite well now, and that makes things go by so smoothly and comfortably for everyone. I had a really great talk with our surgeon this morning about the coming weeks for Nate. We want to get as long of a trial with this temp stimulator as we can for several reasons...reasons that I hope to explain more in depth when this trial is over. Hopefully we can get a good accurate picture of the day to day life of Nate with this stimulator as opposed to him without it.
It was a good, quick stay this time around. After the little guy took a good nap this afternoon and woke up looking a lot better than he had been all day, we were discharged late afternoon and home by 5. Oftentimes you make that trek home from the hospital with a feeling of defeat, sheer exhaustion, uneasiness, and being overwhelmed. But every once in a while, everything goes perfectly...and that ride home gives nothing but smiles.

Where we stand now

2011-08-11T11:02:00.006-04:00

Tomorrow, I'll turn 30 years old. The smells of the cake my sister and the girls are currently cooking waft through the house as they hurriedly put together what they had planned to do later. The sweet card and gift they gave me made me cry. But the best gift I have had was having my little sister here for 2 weeks. We've laughed until it hurts to laugh, had some really great conversations, and just genuinely enjoyed each other's company. I will miss her greatly when she heads home.
30 years old. I have high hopes that I will now no longer be referred to as "the baby" among the group of moms we spend so much time with through the school year. And maybe now, I won't be gawked at when people find out my age and the fact that I have 3 kids...2 of whom are now in school. 30 just seems so much older. There are days where I still feel like I'm 12. But there are also days where I feel much older than I am...continuous stress will do that to you.
Its funny how life goes on despite the seemingly momentous milestones that take place. Tomorrow, we'll be in the hospital once again. Actually, we'll start that way in just a few short hours...

It took a few days, but Nathan responded very well to the temporary stimulator. He started eating so much and not complaining of pain or nausea or discomfort at all. He had more energy and seemed improved overall more than we have witnessed since starting oxygen therapy 2 years ago. He was a different child...happy, playful, not sleeping as much, hungry, and so very sweet. He felt great!! With Jay and I being each other's checks and balances to hopefully keep the placebo factor at bay, we both were in complete agreement that it was indeed working well for Nate.However, something had happened within the past day. He just didn't seem as good last evening than he has this entire week. And when he woke this morning, he was really bloated. I felt a bit defeated and really confused going into our appt with our surgeon this morning, but I also could not deny the fact that he has had one of the most incredible weeks he has had in a very long time. We also couldn't ignore the fact that he has gained .8kg in a week...almost 2 pounds. Granted, I think some of that was due to his bloating this morning, but I know from weighing him at home that he has gained a good pound at least...in a week!! Eating will do that to you! And that's something he hasn't done much of in the past few months.Our surgeon checked the pacer and realized that the impedance had changed quite a bit and was almost at the level where the pacer would stop sending electrical signals. This could be one of the reasons why he is so bloated today. A couple of things come into play here...when he placed the temporary stimulator last week, he noted that the angulation of Nathan's stomach was unusual and made placing the leads rather difficult. This could be why the leads are coming loose. But also, Nate took a big fall yesterday morning directly on the stimulator taped to his belly, and that could have jostled everything enough to loosen the leads. Regardless, we know it is about the stop working entirely and could potentially be seeing the effects of it losing its signal already.However, we need a little more time and information to make sure that this stimulator is working as well as we need to warrant the placement of the permanent pacer. The placement of the permanent one is a bit more in depth of a surgery that we don't want to put Nate through unless we know without a shadow of a doubt that it is working really well for him. This type of treatment is usually done on older kids and teenagers in the pediatric population, and they can give numerical values to their symptoms to be able to accurately portray how they are responding. Obviously, Nathan can not do that, so we are hoping that giving him longer time with the temp can help all of us tell completely how he is doing for more consecutive days. Additionally, since this treatment in pediatric patients is still in the experimental phase, insurance coverage is a bit difficult to achieve, so we need a longer trial to warrant the coverage.
Since his current pacer is almost kaput, we would need to insert a new one to continue with this trial. So, Nathan will once again be admitted to Shands this evening and go in tomorrow morning for the placement of a new temporary stimulator. Since our surgeon is familiar with the odd angulation of his stomach now, it should be easier to apply the electrical leads. Hopefully this will be a quick 2 day stay and be home by Saturday.

One thing we have learned since having Nathan in our lives is learning to fly by the seat of our pants fairly regularly. I think that's how that saying goes. But the emotional roller coaster of doing so is tough at times. Nathan is doing great! Sad to say, he was so excited when I told him he was going back to the hospital today, as he started talking about all the movies he would watch and the toys he would play with in the playroom and being able to read his favorite books the hospital provides. This would all be infinitely harder if he weren't so adaptable and easy to please.

Partners in Crime

2011-08-09T14:16:00.000-04:00

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The problem with making friends...

2011-08-04T22:58:00.007-04:00

I have mentioned in the past that our stays in the hospital are made easier by the people we encounter...people who we deem as friends...who have become integral parts of our life over the past few years...who we love as individuals.

In the medical world, doctors help fix you and nurses help nurture those "fixings" until you are able to be part of society once again. Doctors get a lot of attention in our "world", but I think nurses and other caregivers need just as much attention...

Nathan was discharged from the hospital today...just a few hours before one of our favorite nurses was turning in her Shands badge and adjusting her life compass for a state quite a bit west of us for a new beginning and a start to nurse practitioner school. I have to be honest in saying that my heart is broken saying goodbye to this dear person, but I am also elated on the adventure she has ahead of her.
After she removed his IV and was walking out the door, Nate started to tear up while saying that he would miss his favorite nurse. She has been such an integral part of the changing moments of the past month of his life, and he is old enough to realize that he most likely won't see her again as she embarks on a new journey in her life.

He loves his "Miss Lauren" and her alligator name badge holder thingamajig. We all do. We'll miss her...we already do.She leaves a lasting mark on our memory banks from here on out. She will forever be a part of our lives.
In other info, the little guy is doing well. Really well. We came home today early afternoon, and Nate and I had a really long nap while my sister took the girls to the movies. He woke seeming to feel so much better. And better yet, he ate a good amount for dinner tonight...4 peanut butter crackers, 2 big handfuls of pretzels and 1/2 a poptart...more than he has eaten in a good while and with no complaints of feeling sick or hurting afterward.
The emotional part of trying to figure out if he is responding to the pacer is the hardest...the psychological effects (the placebo effect, like his surgeon referred to) are tough with something like this. If you would have asked me a day ago how he was responding, my answer would have been fairly negative. If you would ask me tonight, I would have nothing but positive things to say. I am thankful that we have some time to see how he responds, and I continue to pray that we have clear evidence one way or the other. It is a little tough to go from praying earnestly that he would only respond favorably to the treatment to the prayer of "thy will be done, but please make it clear to us" prayer.

(PS: We love Ms. Jackie too and better NOT hear of her moving any time soon!!!)

The temporary pacer

2011-08-03T21:22:00.004-04:00

I like to keep the blinds open when we are inpatient. I like to look out to see the sun peak through the early morning hours and evolve through the day until the moon seeps through the slats of the encased miniature blinds. The hazy crescent moon dimly shines through our window tonight as I listen to the rhythmic sucking sounds of a little paci boy falling asleep...hopefully (and sadly) one of the last nights I hear that sound of confirmation that the little guy is asleep, as his days with his paci are coming to a close.
I have so many emotions running rampant this evening, that it is difficult to explain how this admission has gone. We love the people here...from the bottom of our hearts, we genuinely love so many of the medical personnel we encounter during each of our visits. They are all amazingly special people who will help Shands to rise high among favored Children's hospitals. Amidst the circumstances, I am so thankful we have had the opportunity to meet such loving and caring individuals. Each one of them add a sense of comfort to a chaotic medical world, and they are all incredible blessings in our life.

Nafey boy was admitted Monday afternoon and taken down Tuesday morning for the placement of the temporary gastric stimulator. He handled the procedure very well. Unfortunately, he got sick a few times during the day and didn't tolerate eating too well. He was maxed out on zofran until yesterday evening, but after that last dose, he seemed to be able to tolerate his feeds (formula) quite a bit better. I was kind of discouraged last night at his reaction to the stimulator, but we wanted to give him a little bit more time to show improvement.
With gastric electrical stimulation, a patient who is going to respond to this type of treatment should show a dramatic difference in symptoms within 12-24 hours of placement. Our surgeon explained that he had a patient last week who could not tolerate food without having severe symptoms of gastroparesis and she was eating cheeseburgers and asking for more the night of the placement of her temporary stimulator.

Nate's nausea seemed to be gone this morning, but he complained about tasting his meds when we gave them to him in his tube...something that shouldn't be happening. He ate a teeny bit of breakfast and seemed fine. He had good energy and was ornery as anything...he was doing great! It was then that I was getting excited that maybe the stimulator was working. I had not let myself picture how much better of a life Nate would have if the stimulator was a huge success until that moment. To picture him being able to eat anything he wanted without pain or bloating or discomfort or nausea was so exhilarating. Oh, how I want so badly for that to happen! He went down for a nap mid-morning, and I bumped his feeding rate up by 10mls with plans to bump it up even more when he woke because I was convinced that the stimulator was starting to do amazing things for the little guy's stomach.Unfortunately, he started complaining that his stomach hurt a few minutes after he woke from his nap. He asked for meds and I turned down his rate again. He had a few random gags through the afternoon but never asked for zofran. He ate a couple bites of pizza and 2 saltine crackers a while after his pump feed was finished. I was pretty bummed about how little he had eaten throughout the day and how he responded to the small bumped rate past his "comfort zone" rate in his feed. He seemed to want to eat, but was done after taking a bite of something. Finally right before bedtime, he asked for some dry cereal and ate quite a bit.

The problem is that nothing has changed. Nothing. When talking with our surgeon this afternoon, I explained that the emotions of all of this are up and down...I wanted him to respond to this pacer so much that sometimes I think he may indeed be doing well with it. But after a while, I realize that everything is the same. I talk myself into the fact that he just had anesthesia yesterday and his stomach just needs more time, but then I realize that everyone else who responds to the pacer does it within a few hours because it is doing the extra stimulation for the stomach to move food through.

We are not giving up hope on the pacer quite yet, but our surgeon did say this afternoon that Nate may be one of the select few who do not respond to this form of treatment. Even though we knew this was a very real possibility, it was still like a punch in the gut to hear it.

We are going to be heading home tomorrow to test the stimulator more for a few days. We want to see how he responds outside the hospital, if things change with a little time, and whether we can get an accurate portrayal of how Nathan's stomach is doing. We will report the findings back in a few days, at which we will then have a permanent pacer implanted if we see a dramatic change for the better, or have this temporary one removed and his g-tube switched to a gj-tube.

Its been a long week so far...one filled with emotional highs and lows. I pray that God will give us wisdom and irrefutable evidence to make our next decisions.

The next step

2011-07-29T23:45:00.009-04:00

Seems I posted the "paci bon voyage" post about a week too soon. The good news is that all this talk of getting rid of the plug is helping the little guy deal with it better. The other good news for him is that he gets to keep it for about a week longer than we had planned with a new date of riddance for next weekend...Nathan will be admitted to Shands again on Monday for a few days.

It has been a bit difficult to know which way to go with his treatment at this point. Some days he does okay with the g-tube...some days he looks really good. But then there are other days where he clearly struggles with pain and horrible reflux and feeling "sick", like he describes it. He understands now that zofran helps him when he feels sick, and he'll ask for it when it gets pretty bad. The bloating is still tough on him at times...usually if he eats something by mouth or is having an especially rough day with motility.
His reflux has gotten pretty bad. Our wonderful surgeon did the surgery in a way that should not cause any additional reflux, so the consensus is that we are just pumping him full of so much more volume with no where for it go but refluxing up until it finally starts to empty. This would be why he is gulping and coughing and hiccuping so much. We've doubled his reflux meds and are at the highest rate of his motility med, even though that has shown that it really does nothing to speed things up anyway. He has recently started complaining that his meds taste nasty and requesting something to drink to wash away the taste, even though I give them through the med port of his g-tube.

The good thing is that he has put on a little weight! One scale showed that he put on a pound since his surgery and the other showed that he put on 1/2 a pound, but it is weight gain nonetheless. I just hate that it requires so much daily discomfort and pain to get the adequate nutrition into him. I have mentioned before that one of the hardest aspects of this disease is that Nathan and others suffering from mito have to learn to live with a degree of daily pain and discomfort. There are so many times that Nate says that he hurts, and all we can say is "I'm sorry, hun." So it is difficult to know when to continue to say "I'm sorry, hun" or when to intervene with the next step of trying to help bring relief...all while not knowing if you are making the right decision or not.
So, we are at a crossroads, as our surgeon put it. We know that in order for Nathan to tolerate all of this better, we are going to have to make some changes. Our GI doctors were completely correct in their prediction that he wouldn't tolerate just a g-tube, but everyone was supportive in us trying...I appreciate that. And I am extremely thankful for the next step in this journey...

Our children's hospital is one of two hospitals that is currently offering a gastric stimulator for peds patients: a pacer device that helps to stimulate contractions in the stomach to move food. Like I had written earlier, I didn't think that Nate would be eligible for it, but our surgeon said that he wants to try it for him. The success rate for the kids that responded favorably to the temporary pacer is remarkable. The question is whether Nathan will respond to the temporary pacer or not. We are optimistically hopeful and prayerful that this will be the treatment that helps with his struggles against dysmotility...all while being realistic that it may not bring the relief. But we, our surgeon and GI team, and numerous other docs that we have talked to have all said that it is worth a try. Due to the nature of mito, it may work...or it may not.If it doesn't work, our surgeon said that we need to make the decision to either do a fundoplication (where Nate would undergo a surgery that would essentially squeeze the top of his esophagus to prevent reflux) or go ahead and switch to the GJ-tube...the fork in the road if the pacer doesn't work. Honestly, I don't want to do a fundo based off two main reasons...1) Nate's lungs sound good, so it doesn't seem like he is aspirating, and 2) when you have dysmotility on one end of the GI tract, you really don't want to almost close up the other end. So, if the pacer doesn't work, we will more than likely switch to a GJ tube and get his GI system in better working order before the illness season strikes again and we lose more ground.The plan is for Nate to be admitted on Monday afternoon for IV fluids through the night, then he will go down to the OR on Tuesday to have the temporary pacer implanted. The leads of the stimulator will go through his g-tube stoma and attached to his stomach. The actual stimulator will then be taped to the outside of his belly. Our surgeon said that they typically see improvement if it happens within the first 24 hours, but he wants to give Nathan a good 1-2 weeks to see how he really responds to it. If all goes well after the placement, we should be able to head home within a day or two. Once we know how his body is responding to the extra stimulation, we will then be able to make a better decision of the next step.
We are at a difficult spot in caring for Nathan in that we don't exactly have a rule book or set treatment that will make him better. I had a good conversation with his pulmonologist the other day where we discussed that taking care of Nate from a medical standpoint in more like an art rather than a science because his body and this disease don't play by a set of predictable rules. That is tough to approach at times when we are trying to figure out what to do.

But it is times like these that I am indeed thankful that we have the love of our heavenly father who created our precious son...who has numbered every hair on his head, who is familiar with each cell in his body, who has the foreknowledge of the course his life will take. And we continue to pray that he will give us guidance in knowing how to proceed in the care of our child...of his child. Please keep my little man in your prayers next week...that this pacer will work, and that God will give him grace through another procedure.

Paci

2011-07-27T19:54:00.007-04:00

He has such a tender heart...I laid beside him last night...crammed on the bottom bunk between the little guy, Tebow (his beloved stuffed dog), Mousey (his stuffed mouse that he won in a "The Claw" vending machine at Marco), and Mito, (his stuffed turtle that Dr. Koenig gave him a couple of years ago). It was a tight fit. As I stroked his hair toward the right side of his forehead, I told him stories of how all little children have to pass from babyhood into childhood by giving up their most treasured comfort items: their sucking habits. His parents did it, his sisters did it...and now it was almost time for him to give up his beloved paci.
What I didn't expect was the little chin quiver and tear-filled eyes with each and every story. Each time I explained the scenarios of one of his loved ones giving up their "lovies" and passing into childhood, tears would stream down the little guy's face...not in an audible cry, but in the kind of silent heartbreak that most experience at the movies or church or on their pillows as they cry themselves to sleep. That was why it was so hard to witness. He was genuinely sad for the ones before him to have to give up such treasured items. It broke me...it made me want to let him suck on that dang paci for as long as he ever wanted. It made me want to completely ignore societal accommodations on such added "appendages" on our kiddos and just let him set his own time frame of when he wanted to give up the paci.But it needs to happen. The paci needs to go. As much as I realize that society will probably give the little guy a pass at keeping the attachment longer due to his circumstances, and as much as I LOVE that little plug that is often attached to my littleun's mouth, I have also come to the realization that it needs to go. I have always said that apart from letting him have a paci longer than anticipated, I would treat Nate like a regular kid, despite what he has to deal with on an everyday basis. Well, now it is time to treat him like a regular growing kid without a paci. It makes me sad to say goodbye to it...but like I tell him, he is such a big boy now.If only he didn't have such a tender heart about it...

Book Club

2011-07-25T22:20:00.002-04:00

We've met some pretty incredible people the past few years through the school system and created some wonderful friendships through these encounters. I think it is important to get to know the families of the kids my little hooligans like to hang out with, so we are pretty much out in the open at school often. That is one thing I miss about the summertime...not getting to see everyone regularly like we do during the school year.
Anyway, in an attempt to keep the friendships of our chiltlins kindled through the weeks of summer break...and in a bigger effort to get their noses out of the copious rerun episodes of Phineas and Ferb and into books where they can practice all that good learnin' they learned at that place they do all the learnin' stuff during those learnin' months, one of the moms started a book club for the kiddos.
The kids choose a book to read and then we all take turns hosting the book club. We chose Charlotte's Web for our shot at hosting. Well, let me rephrase that to I chose Charlotte's Web because I am not too crafty and fun with this kinda stuff and I knew a movie of the book would take up a good amount of the time. And we already had the book, so I wouldn't have to buy it. I took the easy way out.
The girls loved reading the book! Abby and I took turns reading it out loud to Emma so she could participate in the book club as well. When the girls arrived, they made a door hangy thingamajigger craft that had absolutely nothing to do with the book, but I did tell them they could draw a pig or spider on it if they wanted to stay in theme. They put flowers and pom-poms on it instead.

We did decorate sugar cookies with icing in the shape of spider webs. And I asked them questions I lifted from the web about the theme of the book and main characters and all that jazz that totally used to bore me to tears in school. I hated English. Mr. Cliff deNotes was my best friend in high school.
We ate sugar cookies and pizza, where it took everything in me not to burst their little innocent bubbles by mentioning where their precious pepperoni originated. Little did they know that they were eating a deliciously ground concoction of Wilbur. Wilbur sure is tasty.

We settled in to watch the movie, which held their attentions for all of about 20 minutes before they erupted into massive games of hide and seek and rearranging every square inch of the house that had been carefully cleaned in preparation for the party. But they did have fun. They were especially surprised by an impromptu visit from their 1st grade teacher (well, the teacher to half of them) and all screeched and ran for hugs when she arrived.

It was a fun night. Exhausting...LOUD...but quite a blast.

Wordless Wednesday: Blue

2011-07-20T23:03:00.001-04:00

More from Marco...

2011-07-18T22:37:00.007-04:00

Many moons ago, I said I would post some more Marco Island pictures here. Honestly, it feels like it eons ago that we actually went...so much has happened since that time. Oh, how I wish we could be there again...in the warm sun and relaxing atmosphere. I miss it so much.

And since I am a woman of few words during these long summer days, here are some more pictures from our June trip to Marco Island...starting with one of my favorites (nevermind the fact that I completely cut off Emma's hand in this shot, though it is probably bothering me a whole lot more than you)...

The last of grandparent month

2011-07-14T21:06:00.006-04:00

We have had the wonderful privilege of having Jay's parents and my parent's with us for a good portion of June/first week of July. Since they all live a full day's drive and 3 states away, it has been difficult for us to make that trip north to see them all as often as we would like. So, it has been a wonderful treat to have them so much this summer. With these years in the kids' lives being such impressionable years in development, I am so thankful that they have been able to spend as much time with their grandparents as they have this summer.
Now that everyone is gone and our big summer plans are over, it has been a bit of an adjustment to get back into the swing of things around here. This week and next are some of our only true lazy weeks...meaning that barring the normal doctor appts and therapies, we don't have too terribly much planned. I can not explain how nice it has been to wake up and lounge around the house for a couple of hours with no specific place to be. Abby has played copious amounts of Wii, Emma and Nate have had their fair share of tea parties and playing "house" (with Emma always being the mama and Nate always the baby), and I have enjoyed a new book. Each day, we have met with friends or swam or gone to the summer $1 movie. It has been the epitome of summer vacation.
Nathan is doing really, really well this week! Its honestly the first time since his surgery that I can say that. I was pretty worried about him last week. He's still on a slow rate, but is tolerating it so much better this week. However, he has almost completely stopped eating. Yesterday, he ate a 1/2 cup of dry cereal, a handful of popcorn/pretzels and a cracker. That is about the max he eats now. He did tell me yesterday that eating makes him sick, so I am sure that he is realizing how much better he feels when he doesn't eat as opposed to being on his pump. He still has his favorites though...after only eating the marshmallows out of Lucky Charms and a few goldfish today, he ate a slice and a half of pizza tonight. I'm glad he can still eat his faves!
Anyway, he has lost a little weight lately...which I am sure is due to the lack of eating and us giving him some slack on the volume of formula due to the pain he was experiencing as his body was adjusting to everything. So last night, we added that second box of formula to his night feeding and he did great with it (he also receives one box during the day as well). When we did this previously, he would wake frequently, toss and turn and even had a couple of choking/retching episodes while sleeping. I am so glad that he is finally responding favorably to all of this. And the even better news is that he looks really, really good right now. He has enjoyed swimming and playing with the girls, and his little personality is back in full force. It is so good to have my sweet boy back.
So, that's about it for us. We are enjoying this summer and making the most out of it since it will be over before we know it. We're reading good books, watching cool movies, enjoying each other's company, and catching up on all the sleep we have lost the past few months.

A short update

2011-07-10T23:20:00.004-04:00

We have been really busy with family here and our annual summer meeting at church this past weekend, so I haven't had a chance to update since we got home from the hospital last Sunday. Many have asked how Nathan was doing, so I want to write a quick note to say that he is doing fine. Minus a 3 hour trip to our ER again on Monday because he stepped on his tube while walking up the steps of his bunk bed and pulled his entire g-tube out, he has done okay this week. *Just know that after crying when I saw Abby holding his g-tube in her hands because I was exhausted and didn't want to go back into the hospital, I was so thankful that the x-ray showed perfect placement when they were able to reinsert it in the ER. Phew!...and that the long tube has remained taped to his belly at all times since then.*Nate's had a big week with his grandparents (more pics to come later). He didn't feel good for a lot of it until we tweaked the volume of his feeds we were giving him. Once we cut down drastically on how much we were feeding him at night and worked with some other methods through the day, his little personality came back in full bloom. The short story is that 1)he can not handle bolus feeds at this time and 2)he can not handle 2 boxes of formula at night quite yet. But, as of today, he was able to have his daily rate increased to 45ml/hr with little issue! We have doubled his reflux med in hopes to curtail some nasty reflux he has had with all of this, and we hope to be able to reach his caloric intake goal by the end of this week if all goes well. It's slow going, but we are trying. The little guy is a trooper through everything.

**Pics from the past week will follow sometime this week.**

Home...again

2011-07-03T20:00:00.011-04:00

I spent a good amount of time looking out our window last night. It was the best view we have had from the few room changes throughout the week. It seems that the longer you stay inpatient, the more emotional and sentimental you become...be it the lack of sleep or extreme awareness of the delicate state you live in...the emotions do seem to go into hyper drive during each stay in the hospital. I spent a good amount of the evening looking into the nicely manicured palm trees that peppered the entrance of Shands Hospital. Across the street stood the lighted windows of the VA hospital and the fairly new Cancer Unit for Shands. I spent some time wondering who may have been looking out of those other lighted windows onto one of the busiest streets in our city. Who else was laying their head on a pillow that was not their own?

I was also spending that time thanking God for placing us in a home just a few short miles from a wonderful Children's Hospital...a few short miles from numerous specialists trying to figure out a way to improve the life of our littlest Ferrell. A few short miles from nurses and PCAs and therapists who want our dear son to succeed to his greatest ability in this life. I am exceedingly thankful that God has placed us in this area of our country...that is where my thoughts were as I looked onto those perfect palm trees encircling our hospital's entrance last night.Nathan is home tonight. He is currently tucked in on the couch in our bedroom with his feed running. We finally convinced him of wearing a pull-up tonight. After being in big boy undies for a year and a half, that was a hard thing to do. However, when a child has almost 470mls of fluid running into his body while he is sleeping, he will indeed have to "void" some of that fluid during the night. A pull-up is a must at this point!
During our second stay inpatient this week, we realized that Nathan was not doing well because his feeding rate was set too high. After playing with the rate a little, we found that his magic number seems to currently be about 35ml/hr of feeds. Once his body starts responding favorably to the feeds without the aid of narcotics, we will start to increase his rate to see if we can get him at a higher rate.

However, due to his struggle with feeds, we realize that the need for a trial with the gastric stimulator is needed (with numerous docs agreeing), and that if the stimulator does not work, a GJ tube may be needed. But, we want to give the little guy a little more time to prove us wrong. The post-op period has not gone smoothly like we had hoped, but we are still hoping that his motility shows some improvement with the feeding change.Anyway, the little guy was discharged again this afternoon. He made the rounds of goodbyes and hugs to the nurses on the floor. It doesn't matter what nurses you have in a visit, you get attached to most all of the nurses on the entire floor. They are amazing little earthly angels in this unusual life...people who you become attached to due to their personalities and intense love and devotion for your own child. They are people who you trust and rely on for physical, mental, and even emotional help in a life that needs constant medical intervention.

For doctors, you are usually on your game...questions at the fore front of your mind, stellar attention at every word they say, astute biding to their requests...but for nurses and therapists and other helpers, our minds and tongues are more free to explain what is in our brain and thought processes. I have never cried in front of a doctor. There seems to be some sort of mind barrier that is automatically put up when a doc comes into the room that shields me and them from the emotional outpouring of a heartbroken parent. But in communication with nurses and PCAs and therapists, my motherly heart is touched in a different way.
Being in the hospital stinks, plain and simple. While in, we are continually exhausted, sore, and emotionally spent. I lost 4 pounds this week alone (I am one of those weird people who lose weight when under intense stress instead of gain it). But being in our hospital, where the people we encounter every few minutes bring intense joy to our day, makes it more palatable. I thank God for those precious doctors, nurses, PCAs, med and nursing students, therapists, janitors, and others who spend their days walking the corridors of a hospital. Relationships in our daily life bring joy...and this rings true even in circumstances where we normally wouldn't imagine. I am exceedingly thankful for the blessings of various people in our lives. And I am even more thankful that our little guy is home...and awaiting the arrival of his Nana and Pawpaw (my parents). Relationships with others mean so much to us...and grounding family relationships make us feel more secure amongst the daily struggles of this difficult life. God has given us so many tools to remain joyful and thankful during our days on this earth.

Back in the big house

2011-07-02T09:44:00.003-04:00

First, I want to say that yesterday marked 11 years that I have been married to my best friend. He is truly an amazing man...loving, supportive, and incredibly unselfish. I thank God for the blessing of having such a wonderful husband. I love ya, babe!!

Well, our stay at home capped out at about 7 hours. I knew Nate wasn't up to par yesterday morning...he just looked puny and literally begged to not get out of bed. He kept saying that he didn't want to go home and he didn't want to sit up and he really didn't want to be lifted out of the bed he had inhabited for the past 5 days. But since it was Friday, and it was a holiday weekend, and all the newbie residents had started, we were really wanting to get out of here. I thought for sure that Nathan would start to feel better when we got him home.

He perked up for a little bit at home but had a hard time moving around and was still in a lot of pain. When he had a hard time with his afternoon feed and his temp started to rise just a tad, surgery said they wanted him to come back. It was a good thing that I was quite lazy when I got home and had not unpacked quite yet.

Yesterday was also the opening day for our brand spankin' new peds ER. We have always had a joint ER with the adult side. They made it kid-friendly on our side and did great with the kids, but our little town has been so excited about the new and separate ER that was being created just for peds. While happy about it, we did not want to be one of the first visitors in it. But, everything was really, really nice there...great colors, aquariums, an underwater theme, quite a few separate rooms. We only had to wait about 3 minutes before they got him back, and an IV was started, labs drawn and D10 given within about 15 more minutes.

I haven't seen his labs, but they said everything looked okay with the exception of his bicarb being a bit high. That kind of threw me because it has always been the exact opposite with him. His bicarb is usually really low due to metabolic acidosis. Last night, it was showing that his body was looking more like it was struggling with a bit of respiratory acidosis and metabolic alkalosis.

However, his breathing has been very shallow and his rate has been really low all week. Since he is so much of a belly breather, each breath he takes causes pain around his tube site. We have figured that he has stopped breathing as much because it hurts to breathe. And since he isn't taking as many breaths, its causing a sort of shift in his acid/base balance that he is having to compensate. Additionally, he has been in so much pain all week that we think he is rather anxious about the pain, causing him to guard his stomach so much and not want to move. Whether he is still experiencing excessive pain or if he is just more anxious about having the pain is what we don't know. His CBC did not show a left shift like we were wondering, which would have suggested an infection. His temp was 99.4 last night but dropped down to his normal temps a little after starting D10. So, we are pretty confident that his rising temp was due to the stress he body was under.

The plan today is to keep him on oxicodone around the clock to stay on top of any pain he is still having and hopefully get him to where he is not as anxious about moving around. They are concerned that he didn't do well with his feeding yesterday afternoon, so it will be good to see how he tolerates it later on today. I'm hoping yesterday's glitch was just because of all the stress on his body as well and that we just need to take things slower. He still doesn't want to get out of bed, but I am hoping that with staying on top of managing the pain all day, he will agree to take a walk around the unit this afternoon or evening. The longer he lays in bed all day, the weaker he seems to get, so I'm anxious to get him up and moving some more.

So, that's about it right now. Obviously, we know that Nate's body doesn't respond normally to a lot of things, but its still hard to know what to do when it doesn't do what we all expect it should. Hopefully the little guy will perk up soon.

Home

2011-07-01T16:33:00.003-04:00

We are home! We packed up boxes and boxes of our new supplies and formula, along with the toys and books and little goodies we had accumulated over the past week and gave the welcomed call to Jay to pick us up and take us home. We made the rounds to say goodbye to our favorite PCAs, nurses, and child life and headed home.

With each admission the little guy has, the closer we become to those incredible caregivers at our hospital. They definitely make our stay a lot easier. Nate creates little nicknames for his faves...Mr. Underpants for his favorite nurse, Ms. Diva for one of the PCAs whose name he couldn't pronounce, and Harry Potter for one of the respiratory people. He would only call them by these names, and they always got a kick out of it.

Our favorite PCA came by for his vitals last night and as she was leaving, Nate said "she doesn't have a tail, mama". "Well, of course she doesn't. Do you have a tail?" was my reply to him, to which he shot back, "Nope. I only have a booty crack." We laughed and laughed at that one.

The biopsies they took of Nathan's esophagus and stomach came back and showed no eosinophils or h.pylori, which is really great. It did show esophagitis, which is inflammation caused by his chronic reflux (due to his dysmotility), so I'm going to talk to GI soon and see if we need to up his dose of prevacid to help with that.

The little guy was sad to say goodbye to Grammie and Papa as they had to go back to Kentucky today, but he was glad to be back home with his sisters. He has still looked pretty puny all day though...he just doesn't look right. A little while after I started his afternoon feed, he became really nauseous and tried to throw up without success. His temp was a bit elevated and he just felt awful. I gave him some zofran and knocked the rate of his feed down and he perked up some, so I am hoping that it is just his body trying to adjust to everything still.

So hopefully he will perk up some more and his temp (which is currently 100.2) will not rise anymore. The cut-off for having to give them a call is a temp of 100.4. But he also had quite a bit of sediment in his urine this afternoon, so I am a bit cautious and hyper-vigilant right now. As for right now, we are just so glad to be home!

Hanging in there

2011-06-29T21:20:00.003-04:00

Nafey magic had a purdy good day. He has eaten a good share of dry cereal through the day and started receiving pedialyte through his tube around lunchtime. They are going pretty slow with the feeds to make sure that he tolerates it well. They started at 5mls per hour (essentially a teaspoon of fluid in an hour) for 4 hours before moving to 10mls per hour and now he is at 15mls per hour. Since he is still going strong without any complaints, they are going to increase it to 30mls during the night. If all goes well, we'll start him on his formula sometime tomorrow. At this rate, we are looking at coming home hopefully on Friday.

The little guy was in some pain last night and didn't sleep all that great, so he was pretty cranky at various times, but he really perked up nicely tonight and was more of his good ole' self again. His IV infiltrated this afternoon, so they had to place a new one. Poor little guy was a hard stick today. He cried and cried but never once fought the nurses placing the IV. When they were finally successful in placing it, he looked through tear-filled eyes at one of the nurses and said "We all done now? I was a good boy". They all showered him with high fives and gifts and said that his highly uncharacteristic attitude and behavior for any kid, much less a 3 year old, amazed them. One of his other nurses from earlier in the week said, "Nathan is why I do pediatrics. For all the hard things we deal with here, every once in a while you get a kid like him and it makes it all worth it."

He's definitely not laid-back and friendly and good all of the time. He can be grumpy and refuse to talk to people at awful times. He can be ornery and hard to convince sometimes. But for the most part, he really does seem to be an extraordinarily special kid growing up in special circumstances. Alas, he's a mito kid...and due to the complexities of issues they all face, they are hands down some of the toughest kids around. Whatever they are lacking in energy production, they are totally making up for in strength of heart and spirit.

And if none of this makes sense, it is because I have had veeeeeery little sleep the past couple of nights. I think I'm going to curl up beside my precious little son and drift off to sleep soon.

A tubie

2011-06-28T21:17:00.003-04:00

The little guy was taken back to pre-op and then the operating room about an hour earlier than we were expecting this morning. I have heard horror stories in the past about anesthesiologists not wanting to adhere to the somewhat controversial mito protocol when it comes to anesthesia, but we were nothing but impressed with the doctors who worked on Nathan today. They asked what has worked best for him in the past and what anesthesia we preferred from a mito standpoint and went with that plan.
They gave him a good slug of morphine directly after surgery, so that really helped control the pain. He has received 2 more doses throughout the day to help as well. We can always tell when he needs more pain meds because he either starts breathing really fast or starts holding his breath to keep from breathing as much. Once the morphine kicks in, he is a totally different kid. We are expecting that he will be much better with less pain tomorrow.
He has been an absolute trooper. He's tired and sore, but he has charmed the nurses off and on and enjoyed his company throughout the day as long as he can still see the TV over their heads. Tonight as one of his nurses was listening to his chest, he started rubbing her arms and said "You have really soft skin." Who knew the kid knew how to flirt so early! Or maybe he gets a little more friendly with some pain meds in him. Regardless, it gave us a good laugh.

His sense of comfort in this hospital is better than it has ever been, which is both great and sad. He rarely gets anxious anymore unless something is happening that he isn't used to happening in past visits. He has been darling and sweet and kind and well-mannered. His attitude continues to amaze me with everything he has to endure. God's grace and loving hand is definitely evident in Nathan's life, and it is simply incredible to be a witness to it.
Except for his meds, the little guy has been NPO all day to give his stomach a chance to heal some. We will start feeds tomorrow and see how he tolerates them. For you tube feeding moms, we are doing EO28 Splash (Neocate). And he is pretty excited that he no longer has to take his yucky meds by mouth starting tomorrow since we can just put them in his tube.

Thanks for all your prayers and words of encouragement. They truly do mean a lot to us.

One amazing kid

2011-06-27T19:22:00.003-04:00

Little guy was admitted this morning for his surgery tomorrow. We met with surgery a few times and anesthesia and have everything squared away for tomorrow. It has truly been smooth sailing all day, and the little guy put in a really long nap and has remained in the flat on his back position the whole time. After being going and going like crazy the past couple of weeks, today seemed to be exactly what he needed. He seemed to really enjoy being able to chose whatever movie he wanted to watch without having to share the choice with his sisters. Speaking of them, the whole clan came to visit for a bit tonight. Let's just say that two energetic girls in a small hospital room where there are multiple lines coming off their brother is not a good combination. But, Nate seemed to enjoy having them here for a short visit. Saying goodbye to them all tonight was pretty tough for the little guy.
Grammie read a couple of books to settle everyone down. She and Papa are taking care of the girls this week so Jay can be up here and at work. And my parents are coming in next week, so our kids will surely be spoiled absolutely rotten at the end of their grandparent adventures this summer. They won't know what to do when everyone leaves...and neither will we. Surgery is set for around 10:00 tomorrow. Post-op, Nathan will be moved up to the PICU for closer monitoring. They like to keep a pretty close eye on the little guy here, and I truly appreciate that. He is taking everything in stride in his general laid-back attitude. As long as he has Tebow and his paci, he can go through anything. He sure does have an excellent attitude about it all. I love this kiddo.

Marco Island

2011-06-26T21:36:00.005-04:00

There is something special about watching a child run from the ocean onto the beach. All children run when they get to the point where the salty water hits below their knees. They run until they reach the place where the sand is still wet from the periodic wave that comes to moisten the sandy earth and walk once they hit the dry sand. They run because they have no cares in the world...and their legs are entirely too short to walk everywhere they go.
I'm not sure what age children stop running in from the waves...but at some point, there is some unspoken rule that as you get older, your once carefree life of running along the beach's edge is from yesteryear. Maybe it is because adults are too jiggly, watching carefully to walk just the right way so to minimize the amount of thigh and stomach fat that jiggles as you make your way from the hiding waters of the ocean onto the revealing sands of the beach. Maybe the hustle and bustle of the world has been completely left behind so the desire to run on the beach is squelched with the plan to vacate from anything fast that this life entails. I'm not sure what exactly causes us to stop the carefree run from water to dry land along the way to adulthood, but I secretly wish that it was socially acceptable in our culture to do such acts. That carefree act seems so appealing at times.
Marco Island was a beautiful as ever this year. It is truly one of my favorite places on earth, and we all look forward to the sights and relaxation each June. Its a time to revamp and reorganize our thoughts...a time of relaxation that brings us home rejuvenated and ready to tackle the daily struggles of our lives once again. The key prefix being "re" in quite a few of those words..."re" essentially means "again". While living in this world where we must undertake hardships again and again, it is always good to rest your mind and body every once in a while in order to rejoin the ranks of daily life.
I have to say that this is the first year that I have truly relaxed. The kids are older and easier and Jay's parents came along to help with the littuns while enjoying God's amazing handiwork labeled as Marco Island...it was indeed the best relaxation I have had in quite some time. The girls being able to swim this year coupled with the calm waters of the gulf makes for a nice day at the water's edge enjoying a good book while peeking out of the pages every once in a while at the shenanigans of the cheelren. The girls are also at the age where they scope out the beach and find various friends to meet and play with, so that's an added bonus. It was indeed a fun and relaxing few days.
Nafey boy did great for about a day and a half before starting the downward spiral of exhaustion. He did awesome the first day...so much energy and excitement! He loved the beach and especially LOVED the pool where he went down the water slide for the very first time...the first of about 25 times. But by the third day, he didn't want to slide and he didn't like the beach. On the 4th day, he asked to stay in the hotel and sleep. When he woke, Jay took him to the pool where he swam for about 30 minutes before asking to go back to bed. Thankfully, Jay and his dad aren't too fond of the beach and Jay had some work to do, so he didn't mind staying in the hotel with Nate a lot of the time while all of the girls basked in the sun each day. And Nate's good moments through the week were priceless. It is so much fun to see the excitement of the beach on every kids' face.
It was a great week...one of those weeks that ended before you ever wanted it to end. One of those weeks where you try everything you can to ring every last drop from it. One of those weeks that I am hoping we can do again next year. This was the 7th year we have been able to go to Marco, and I hope that we will be able to continue to attend each summer. It was indeed what we needed.

Please keep the little guy in your prayers this week...he will be admitted to the hospital tomorrow for his tube placement on Tuesday. I'm hoping we will be home by Thursday or Friday. I'll post more pictures of Marco when I return home, but should be able to post some updates on Nate's surgery and inpatient stay through the week.

Vakayshun

2011-06-21T21:34:00.003-04:00

I meant to post something before we left for the week, but it seems that packing the kitchen sink and all other belongings for a week at the beach is a little time consuming. We are currently on our yearly vacation to one of my mostest favoritest places ever: Marco Island, FL. The weather has been perfect, the company has been superb (my in-laws are with us this time), and the kids are having an absolute blast. While jumping back and forth from the beach to the pool throughout each day, the kids are sporting quintessential beachy pink-tinged skin. I've taken tons of pics the past couple of days but won't be able to download them until I get home, but I can't wait to edit some of these pics.

So, I'll be gone until this weekend but hope to post pics and recap this week this weekend before Nate is admitted for his tube surgery next week. He will be admitted on Monday morning and the surgery will be Tuesday morning.

Until we return from the land of baby sea turtles...

Whoever quoted "lazy days of summer" didn't have kids

2011-06-16T23:02:00.005-04:00

This week was our first full week without school...first full week of summer vacation. Summer equals laying around sun bathing and watching all the tv you missed through the year, right? Yeah...that's what I thought too. Our prior summers have been pretty easy and sometimes a bit boring. How dare I utter that absurd word these days! "Boring". What in the world is that?

We had about 3 hours sometime after school ended to catch our breath before the madness of our schedule started once again. I honestly think we have been more busy this week than we were when school was in session...but that just makes our vacation to the beach next week all the more sweeter.

This is our week in pictures...

The kiddos on Monday morning before dropping the girls off at a local VBS. It is held at the church where Emma attended preschool and has a really neat VBS each summer...not to mention that almost every one of the kids' friends attend it each summer. It makes for one really fun week for them...and about 3 hours of semi-quiet each morning for the mama.

The little man loves to utter each morning "It's just you and me, Mama! No girls!" To which I have to remind him that I am a girl...to which he replies "no, you're a mama!" Okay, I'll take that. At least I have had tons of snuggle time with the little guy this week.

The little man has been able to watch what he wants to watch, read what he wants to read, and play whatever he wants to play each day. If he wasn't spoiled before this week (he was!), he surely will be now. I took this shot when he was watching a show...but mainly because he was complaining of belly pain and became bloated really quickly after eating a little watermelon. Since we are entertaining the stomach pacer idea, I want to take pics of his bloating issues so I can have something to compare to if we should do the gastric stimulator. Also, he has had some really weird bruising in weird places on his body lately. His platelets and h&h are fine and other blood related labs are okay, but I wonder about his clotting factors. However, he is also a 3 year old boy who may get 3 year old boy bruises. But a mother who constantly stresses about her child's health always wonders about the "other stuff" it could be. ;-)

We had our preschool friends over one day after VBS. They were all ecstatic to play with one another. Makeup and dress-up clothes were strewn about the playroom, and a mock wedding was performed. Directly thereafter, a discussion between mother and child was had of the fact that we should not kiss others on the lips, no matter what you saw Prince William and Kate Middleton do...and yes, I know you saw the bride and groom kiss on the lips in the wedding Daddy took you to of his grad student...but no, we still don't kiss our friends on the lips, even if you are pretending to get married. It spreads germs...and yeah, we just don't do it.

A wardrobe and role switch-a-roo...who's characters did not kiss one another on the lips, thankfully.

The little man had his yearly sleep study last night. He's an old pro and completely used to the entire process of being hooked up to the stickers and glue and wires and whateverelse. The only thing he absolutely hates about his sleep studies is that he has to wear 2 cannulas in his nose instead of his normal one...one for oxygen and one for CO2 reading (however, I am still not sure how this one is needed when they have a skin thingamajigger that reads CO2 as well). He also equally hates the red thing that sits on his upper lip and reads his air flow exhales because it gets in the way of his paci.

But all that said, the little guy is that greatest little warrior I know. He fussed a bit about the 2 cannulas and red thingy being uncomfortable, and when I told him that I was sorry that he didn't like it, but he would have to deal with it for one night, he uttered a sad "okay mama" and stopped complaining. It broke my heart. Nathan has to endure more than most people do in a lifetime, yet he takes it all in stride. Often it makes me so sad that he is used to being in pain, uncomfortable and inconvenienced. But then I realize that God gives extra grace and mercy to those who need it most, and I have no doubt that our heavenly father is helping our precious son through these difficult times in his life.

When Nate woke this morning, he had a blood test to check how his breathing is affecting the rest of his body. When our sleep tech came in and unhooked the little guy from all of his gear, he finished by giving him and huge hug and telling him that he was the best patient he had ever had (I found it comical because we had this sleep tech the very first time Nate had a sleep study, but he obviously didn't remember it). It was a sincere compliment to my little boy. God's grace is evident in Nathan's life, and others are able to see it continuously by how he responds to the hardships in his life.
Please keep the Moody family in your prayers, as their precious son, Zach, passed away this week. Additionally, please pray for the Hilliard family as they continue through these difficult days after placing their daughter, Eithene, on hospice.

THE night

2011-06-15T20:39:00.002-04:00

Emma was all dolled up and ready to get her dance on during her recital Saturday night. It was actually quite sweet...like really, really sweet. And I have to be honest in saying that the entire recital was quite entertaining. All 3 hours of it. They perfected the line up by putting older kids in between the younger, less experienced ones. It is definitely a show I would love to see again.

My little munchkin was so excited to be able to perform, and she was uber adorable in doing so. She can not wait to get back in the mix in a couple of months.

I was so glad that I was able to get this video during her rehearsal, as it would have been nearly impossible to get it during the actual performance. See if you can spot the Emmabear...she's the smallest little munchkin in the land.

Make an on-line slide show at www.OneTrueMedia.com

With deep sadness...

2011-06-10T22:07:00.006-04:00

I have mentioned in the past how small our mito community is and how we all lift one another up through the good and the bad in the lives of our children. It is impossible not to get attached to these kids and families living similar lives and hardships as our own. I have also mentioned before how hard our mito community has been hit over the past year with the deaths of numerous of our little friends. It is always such a heart-wrenching time to watch these families live through our nightmares when it comes to this disease.

I have had a heavy heart over the past few days as I have learned that two of our dear mito friends have come to the difficult decision to stop all life-prolonging treatments and have been switched over to hospice care in these final days of their lives.

Please do remember and keep Zach Moody and Eithene Hilliard in your prayers as they live out their final days on this earth. And please ask God to give peace and comfort to their families as they suffer through the unfathomable pain and heartache of watching their young children pass from this earth.

Some tough decisions ahead

2011-06-09T21:15:00.006-04:00

I have so many thoughts and emotions going through my head that it is difficult to put it all down in words. Sometimes the emotions of all of this is indeed too much to handle. Sometimes we grow weary of having to make difficult decisions and not knowing if we took the right step or not. Sometimes we wish there was a road map that showed us what exact treatments we should try. Sometimes we break down from the weight of watching so many of our little friends pass from this earth. Sometimes we beg for God to make all of this just vanish.

Oftentimes, our faith is weak. Our trust wanes. Our outlook of the future on this earth is full of heart break. Oftentimes, we are reminded that we must surrender our fears to our omniscient God.

"Nevertheless I am continually with thee: thou hast holden me by my right hand. Thou shalt guide me with thy counsel, and afterward receive me to glory." Psalm 73: 23-24We met with Nathan's surgeon this morning. He was a delightful man who smiled a lot and seemed to have a good sense of humor. I like it when doctors make you feel comfortable around them, especially during the initial visit. After being told by several doctors that Nathan needed to have a GJ tube placed instead of a G tube, this surgeon was the first who shared my hesitancy on that plan of action and voiced his reasoning that gave me the eerie sense that he had been camping out in the "thinking portion" of my brain for a while.

Let me explain why I was never fully comfortable jumping straight to a GJ tube...(bare with me; it may get rather technical and wordy through here.)

When you are part of a small online community of parents raising kids with mito, you learn an awful lot from each other. One of the hard lessons I have learned over the past couple of years is that for the kids with worsening GI dysmotility, there are only a few steps you can take until you plum run out of steps. The main steps (with some variations along the way for some of the kiddos) is a g-tube, then a gj tube when the g-tube fails, then TPN (total parental nutrition) through central access when feeding through the jejunum fails. Due to the high sugar content in TPN and the fact that bacteria love foreign objects in the body (and throw in the fact that some kids seem to translocate nasty gut bacteria into their lines as a result from the dysmotility), TPN and mito is an extremely risky combination. A central line infection can cause sepsis and take the life of an immune compromised mito kid quicker than you can shake a stick at it.TPN scares me. Central access lines scare me. Worsening GI dysmotility scares me.

If feeding through the jejunum fails, central access and TPN is the next step. So, maybe you can understand my hesitancy of skipping straight to the GJ without even trying a g-tube. We need to at least let Nathan show us how he reacts to having a g-tube before we automatically deem it as a failure.

But let me back up a sec and tell you the other doctors view on this... I mentioned a while back that Nate's gastric emptying study in Houston was significantly delayed across the board while he was off his motility meds for a couple of days. We recently repeated that test while he was on his meds to compare the difference. Much to our surprise, the results were a tad worse than they were in Houston, and again showed significant GI dysmotility across the board. Obviously, his prokinetic (the third we have tried in 2 years) was not working.
So, we have reached a point where his stomach just can not make the adequate strength and frequency of contractions to move food through efficiently. Why do we still want to try a g-tube instead of GJ? Well, because the stomach moves liquid through differently than solids. We know Nate doesn't handle solid food too well, but we have no idea what his GI tract will do with elemental formula, as it is easier to move through and digest. His surgeon and I feel like we at least need to give him a run with a g-tube to see if it helps. Another perk is that I can replace a g-tube at home if this one should pop out or needs changing...a GJ has to be replaced in the OR or IR.

Should he not be able to tolerate the g-tube like we are hoping, it will be a fairly quick procedure for the surgeon to guide in a GJ tube in the same stoma created for the g-tube.
And to make this post even lengthier, after talking about the tube placement surgery, the surgeon surprised me with his next proposal. He said that his desire was to try Gastric Electrical Stimulation on Nathan...essentially by placing a gastric stimulator on Nathan's stomach to cause it to contract and hopefully help move food through like it should. Shands and Nationwide Childrens in Columbus, OH are the only two hospitals that have recently been performing this new form of treatment on pediatric patients with gastroparesis.

The problem that has had my head spinning all day with unanswerable questions, tough emotions, and doubt and hope at the same time is that we are not sure how this treatment will work on a child with mito. The surgeon mentioned that due to the nature of the disease, the pacer may not work. And if it does work, it probably won't last his entire life. But he believes that if it does indeed work, it could potentially help preserve his gut function for a longer time. He said that he believes that Nathan is a good candidate for the stimulator placement.

If we agree to the treatment, he will have the temporary stimulator leads placed through the stoma for his g-tube after it has healed while the actual device (looks like a pacemaker) is taped to the outside of his belly. The temporary stim will last around a month. This will be the time when we should be able to tell if it is working or not. If it does work, he will have a permanent stimulator placed inside his body with the leads on his stomach.
Now, one of the problems is that there is a risk of infection for any foreign object in the body, and infection and mito are enemies, as it saps the body of energy. But if it works, it could potentially be huge for Nate. But we don't know if it works with diseases of energy metabolism, where the disease originates in the cells. But how do we know it won't work unless we try it? But why does Nathan have to be a guinea pig?

You see where my frustration comes into play? These decisions are so very difficult to make, especially when even our leading doctors aren't quite equipped with the knowledge of how to lead us through this due to the fact that it is such a new treatment. But it is times like this that make me remember that God has lead us through so much over the past few years. He has guided our hearts and minds through this entire journey, and he will not forsake us through this difficult fork in the road. I pray that he will continue to guide us, for we need it so desperately.

I used to think that it was a hard decision to pick out which restaurant we should go to when Jay and I were dating. That is comical to think about when you put it against having to make numerous decisions that could positively or negatively influence the life of your child. My, how things have changed over the years.

Wordless Thursday: not as fun as Wordless Wednesday

2011-06-09T20:14:00.000-04:00

My brother and I on the top picture...circa 1986-ish.
Nate and Emma on the bottom picture...2011.

Genetics are funny that way.

Crunch time

2011-06-08T21:53:00.003-04:00

She could hardly wait until early afternoon for her makeover. Its something she has talked about for weeks and the day was finally here. Today was the day that the costume came out of the wardrobe bag for the first time. Today was the day that she was able to wear red lipstick for the very first time, accompanied by makeup she could wear out of the house. Today was dress rehearsal for the upcoming recital. It's been months in the making. Many monthly tuition checks written to the dance studio, weekly classes, and countless personal performances in front of the long bathroom mirror to make sure she had to just right. Today was the very last practice before the big event.
The rehearsal brought forth copious amounts of nervous giggles from the petite ballerinas, periodic tear swipes from the tuition payers sitting in the auditorium with video cameras in hand, and a huge sense of accomplishment for an entire year of learning and practicing. I definitely did not expect the afternoon to be quite so emotional. But alas, my sentimental heart gets the best of me sometimes.
I can't wait to see the final performance on Saturday!

Long day

2011-06-06T19:21:00.005-04:00

I have to say that I LOVE having a camera on my phone. I have always enjoyed capturing as much of life as I can in pictures, but taking a big honkin' camera with you everywhere you go just isn't feasible all the time. Having a camera on my phone helps me to be able to capture the everyday stuff that I normally wouldn't...or helps when I forget my other camera or flat out don't want to lug it around, which seems to happen quite a bit these days.

Nate had a big day at the Shands Med Plaza today. We left at 6:45 this morning and pulled into the driveway at home at around 4:30 this afternoon. It was a long day. However, the little guy was an amazing trooper once again, never once complaining or whining about anything whatsoever.He had the 6 hour gastric emptying scan again today...a repeat test of the one he had when we were in Houston, except for the fact that he was on his motility meds this time around where he was off them for the test in Houston. We want to be able to compare the results to see how the meds are making a difference in his GI motility. Essentially, he had to lay completely still for 90 minutes while a camera took pictures of how food moved through his stomach and intestines...then come back for another short set of pictures at 4 and 6 hours post eating. We should get results within the next few days.After the gastric emptying test, we met with our GI again since his tube placement should be coming up soon (we meet with the surgeon Thursday). It was a straight-forward appt where we talked about how long the hospital stay will be (about a week) and what formula they want to put him on (they are going to contact Houston on this one). Seeing the docs and nurses in our clinic here is almost always a treat...I say that tongue in cheek, as I never thought I would utter such phrases. However, since we have been part of "the system" for over 3 years now, Nathan is pretty widely known around the med plaza. He sees multiple specialists, so he is there quite often. We've been there long enough that the nurses call out to him with waves and smiles as soon as they seen him in the full waiting room and everyone else pretty much knows us by name. He is definitely spoiled with stickers and toys and hugs each and every time we are there. It is always heart-warming to see your child being loved and doted on by others.

(His absolute favorite hiding place in the waiting room at the med plaza)

So the day went very well. Although, we did pick up some results from the labs he had run last week, and they were a bit off in different areas. If he weren't looking so good right now, I would be more concerned...but in all honesty, he is doing great (aside from not gaining weight in a few months). His white count was a tad low again and his IgG levels were lower than they have been in 2 years, so I am praying earnestly that he won't get sick before our vacation or his tube placement. At least it's not winter time with his levels being low like this. He also had another few immune levels that were off, and when talking to our immuno's nurse practitioner, she said that she had already planned to discuss his labs with his immunologist when she gets back from a conference tomorrow. This kid is always a mystery. I wish I was able to see more of what was truly going on inside his little body...what kind of war was being fought in there.

But today I am exceedingly thankful for a little guy who goes with the flow. Who doesn't mind being completely strapped down to a table with a large boxed camera inches away from him for an hour and a half. Who will let me know when something itches so I can scratch when he can't get his hand free during tests. Who cries in fear but willingly holds out an arm so that a needle can be inserted and blood gathered. Who tells strangers "hope you have a good day" after they finish whatever test they have to do on him. Who gives open-armed hugs to his favorite nurses and sly smiles when he asks for more than one sticker. Who never ever complains about the circumstances of his life, but tackles it all with a strong and courageous spirit, a sometimes nervous smile on his face, and an ipad in the crook of his arm. He is my Nafey boy, and God has blessed him with more strength for a little boy than I could have ever imagined.

Is it really June?

2011-06-02T21:17:00.007-04:00

With the end of the school year festivities piling up like crazy coupled with an upcoming ballet recital for the middle-un, our life looks like most every other comparable family during this hectic time of year. But add in the littlest little-un with his copious specialist appts that seem to last at least half a day that somehow got added on during the last two weeks of school plus another upcoming 6 hour gastric emptying scan along with a CT of his lungs and sinuses...well, all dat just adds fuel to the ever growing fire of insanity that we call our life right about now...And then, just to give misery some company, add in a total house makeover...complete with painting and decorations and brand spankin' new carpet throughout the entire house. Well, that just confirms our stupidity to schedule such foolishness during one of the busiest times of the year. It's purdy and all that, but we are so darn exhausted and ragged that having time to sit back and enjoy it all seems to be weeks away still.
I have to admit that I LOVE our new carpet. And I LOVE my husband for not fixing his pay stub to where we wouldn't get a good sum of change each spring from having too much withheld throughout the year. This is the best income tax carpet I have ever laid eyes on. When we moved into our house over 7 years ago, one of the only downfalls was the horribly damaged and stained carpet. We merely shrugged our shoulders and said that we would replace it once the kids stopped peeing on the floor. And so, that was our plan.
Along with the rule of "Thou shalt not wee-wee on the floor", we have implemented other widely known rules of "thou shalt not carry thy Capri-Sun past the table" and "thou shalt not trance through the house with sand, mud, nor debris on thy footies". I am now one of "those moms" who really would rather the kids take off their shoes at the threshold and tip-toe through the house, lest they knock any dandruff or dead skin cells onto our fresh flooring. I am also test driving a new set of shock collars for the chillens that they must wear any time they have food or drink in hand, so to keep them in the confines of the invisible fence that encloses around the kitchen. It's a great little discipline tool. You should hear them yelp each time they walk too close to the doorways. Fo' rizzle though, it is really nice to have new, squishy carpet that makes you want to bounce with each step. I am so thankful that we were able to improve the house in that way.
Nafey boy had an appt with our local immuno on Monday. In the paperwork I have to fill out each time I see her, one of the questions was "Is your child better, the same, or worst than their last appt with us?" Without much thought, I immediately circled "the same". I mean, he seems the same as last year...still going strong, smart as a whip, ornery at times, active for the most part...yep, seems the same as last year. But once I started talking to the nurse practitioner and doctor and started mentioning that since we saw them last a year ago, he has had problems with iron deficiency anemia, hyperammonia, increased GI dysmotility, and had an increase in his O2 requirement, they laughed at the fact that I had thought he was "the same". But in all honesty, he seems the same to me...he's still Nathan...the rest is semantics. I guess it is all a matter of how you look at everything. Anyway, our immuno brought up an excellent point in that all of our doctors here have always assumed that Nate's breathing issues were a result of respiratory muscle weakness, but no one has ever really looked at his lungs to rule them out completely. She is right on the money with that. In fact, I asked a couple of years ago if we could do more testing on his lungs to make sure that we weren't missing anything there, but it was strongly assumed that his retractions and tachypnea were a culmination of muscle weakness and metabolic stress...which is most likely still the case, as it makes the most sense. However, since our immuno wanted to take a closer look at his sinuses since he has had a few sinus infections along the way, she said that she wanted us to get a clearer picture of his lungs as well...hence the CT of his sinuses and lungs. The little guy also has appts with GI and our surgeon coming up next week where we will plan the tube placement. It will more than likely be the end of June of first of July, as they gave us permission to wait until we got back from Marco Island to go through with the surgery. Emma also has her ballet recital next Saturday, and she won an award for "Most Inspirational Student" in her dance class. I am so proud of my little gal. And Abby's last day of school is Tuesday. Man, this has been a crazy few weeks. (Pics from our trip to Augusta/Middle GA; Memorial Day Weekend 2011)

Memorial Day Comparison Pics

2011-05-31T22:40:00.005-04:00

We ventured about 6 hours north this weekend for our annual Memorial Day get-together with some dear friends we have known for years and years. Brought together by the same faith, we all quickly became friends while still young teens...long before any of us married. We would gather at various church meetings during those years, traveling to and fro and making sure that we would see each other at those same meetings. Our friendships grew in love through the years as we saw one another through fun times and heartache, marriage and children, moves and job changes. It is a life-long friendship glued together in God's love...one that I pray our own children will experience on their own with those of like faith as they grow older.

So while I have many memories of our annual gathering stored away in pictures and experiences that I will showcase soon, I wanted to start with some comparison pictures to show the growth our kids have experienced over the course of the past year. I always love looking at pictures like this. For reference, their oldest son is 6 months older than Emma and the youngest is 9 months younger than Nate.
More to come later...

Singing and Signing: PreK finale

2011-05-25T20:57:00.000-04:00

Make video montages at www.OneTrueMedia.com

Pre-K Class of 2011

2011-05-23T22:55:00.004-04:00

My baby girl graduated today...from preschool, that is. All that means is that she is totally ready for her own room to decorate with posters of cutie patooties, an allowance that she will never fully deserve because her room will always be a pig's sty, and the car keys so she can run out to the football game to cheer on her best buds. Kids grow up quickly these days.The comforting thing is that we have informed her that she must continue to share the same room as her sister for at least a few years longer, she thinks that 2 nickels are worth more than a quarter, and we only have a big ole' nasty mini van and a truck that I am fairly certain that her father would not let her take out ever...ever ever with a cherry on top. So, it looks like her growing up will have to carry on for at least a little while longer.
The Pre-K graduation was extremely adorable, though. They all just looked...so...old. And big. And definitely not the little babies that we seemed to just birth a few months ago. However, it will wake us up to reality that they still are itty-bitty on those first few days of kindergarten when the entire school completely towers over the newbies that carry backpacks that are 4 sizes too big for them and still aren't able to pronounce their R's correctly. But today...right now...they are so stinkin' old.

Wordless Wednesday: Sibling love

2011-05-18T21:13:00.003-04:00