Wednesday, January 25, 2012

Cute jokes



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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."

Friday, January 20, 2012

6 years


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!

Tuesday, January 17, 2012

South Pacific


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.)

Monday, January 16, 2012

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


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.


Saturday, January 14, 2012

Houston: Days 2 and 3


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.


Wednesday, January 11, 2012

Houston: day one


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!

Friday, January 6, 2012

A red letter day


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.


Thursday, January 5, 2012

Christmas trip


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.

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