Friday, October 30, 2009

Surrendering...


So, it was inevitable. My super immunity powers held out as long as they could, but the flu was bigger and stronger and just bullied my body into succumbing to the big bad virus. So far, I only have a low grade fever that is making my legs feel like they want to fall off joint by joint...but other than that, everything is tee-totally peachy. Don't ask me how I'll be tomorrow, as Jay's second day of this has been plain awful with a really high fever. At least the girls are perking up a bit now. Aren't they old enough to take care of their parents yet?

Looking on the bright side of everything, it was best I got this sooner rather than later in the week, as Photos for Mito is NEXT SATURDAY!!! I am so excited for it to get here, but I still have a ton of work to do in preparation for the big day. Thankfully, I was able to crank out some of the work today before the fever settled in...and the next two days will more than likely be spent doing just about nothing but popping fever reducers, so I may be able to stay ahead of the game. Anyway, I wanted to share a little something I made today that I am having printed and will showcase on our mito table at the fundraiser:

Thursday, October 29, 2009

Oink, Oink


It ain't over 'til the fat pig sings...right? Or am I just delirious from the copious amounts of fever reducers I have given all day coupled with the amount of time I have had steaming hot girls laying on my chest? Yep, the girls came down with Mr. Piggy flu today. And to top that one off, Jay also came home with a fever. I am the lone survivor so far in a land with many swine casualties. To be honest, we knew this was going to happen at some point. With as many Dr. appts we go to, and Abby in school, and needing some sort of food from the grocery store every once in a while...a woman just can't purell her chitlins enough when they stick their fingers in their mouths every 23 seconds. Seriously though...the flu is simply awful down here. So beware all you wanting to vacay in the sunshine state.

A Nafey boy feeling much better after 2 days on tamiflu:
Today has been a rough day for the girls. When they both woke up with fevers and realized that they were going to miss the only carnival...the one that everyone has talked about since the beginning of school...that the elementary school had today, they started to cry. And then when they realized that they couldn't partake in the very last soccer game of the season tonight, they started to sob. It was a heartbreaking moment in the Ferrell household. We're not even mentioning the fact that Halloween is right around the corner. Their fevers have been super high all day and their headaches are awful. Both girls have hit all time highs with their temps...Abby at 103.4 and Emma at 105 (orally)...both while on Motrin piggybacked with Tylenol continuously all day. When Em was 105, we immediately put her in a cool shower and then made her wear Nate's cooling vest for quite a while. That brought her temp down to 103.5. They are sick, sick girls.
The good thing (well, good for us...not sure who all we infected along the way) was that the girls and I were able to attend a trunk or treat at a local church last night where they had loads of fun and received quite a bit of candy in the process. The girls put on their costumes a few minutes before it was time to leave, and I instantly regretted not making Abby try her costume on previously. Turns out that the hand-me-down Dorothy costume that was labeled as a size that should fit a second grader (for crying out loud) was quite a bit skanky and escort-ish when she actually had it on. All attempts to get her to wear last year's monkey costume failed as monkey costumes are "so last year, mom". So Abby decided to go to a church trunk or treat dressed as the Wizard of Oz skank. All that was missing was some bright red lipstick and fishnet stockings. Score.
Abby (and her best friend Maddie) partook in their very first haunted house where I was sure that they would squeeze the blood right out of my hands. They came out unsure of what just happened but very excited that they did the ritual a lot of kids do at this time of year. And Emma and her main man Zachary spent their time at the petting zoo...in Emma's words "petting the goat's bodunkandunk". Yep, that's my child.
Emma spent a good portion of the night running as fast as she could so she could showcase her super powers...because of course, she was SUUUUUUPER EMMA! This costume could not suit her more. I just laugh at her every time I see her wear it. Em was quite perturbed that she didn't get to go to the haunted house with the big girls. When I told her that she would have freaked out, she said "No mom, I not freak out because I'm SUPER EMMA!" Yeah, uh-huh. The girl wouldn't go near a few of the trunks that had candy because she was freaked out by the hanging spiders and scary pumpkins. Super Emma, hmmmmm.
Nateman stayed home with Jay. He is doing great now, but he still isn't completely up to par. The IV fluids and tamiflu really kicked out this flu quickly for him, and all that is lagging behind is his energy level. Today, he was pretty much back to normal but still slept a good deal. This has been a nasty bug, but we are so thankful at how well Nathan has responded with the treatment...it has obviously saved us a few days in the hospital with him.
Who knows how the kids will be on Halloween. Our hope is that they will be fever free for at least 24 hours so they can go to a handful of houses for trick-or-treating. But if that doesn't happen, I'm sure we can figure out a different plan that will ease the disappointment a bit. Gosh, I hate this though. What a time for everyone to get sick.

Wednesday, October 28, 2009

Wordless Wednesday: She's her father's child


Teaching a child healthy eating habits: Fail.

Tuesday, October 27, 2009

That blasted flu


One of the hardest things about this disease is that you are almost constantly wondering what lies around the next corner. What is going to happen next...and when. Sometimes it is difficult to fully enjoy the really good healthy days because you always have that nagging feeling in the back of your mind that the next shoe is going to drop. Or however that saying goes. But it's always there, no matter how good the days are going. It's exhausting at times...the never knowing what is going to happen next. You learn to expect bad news and get really excited at good news. That's just how you seem to prepare yourself for everything.This disease can change at the drop of a hat. I've never seen a kid go from playing and laughing to really sick as fast as I have seen this happen to Nathan a handful of times. It hits you from seemingly no where. Nathan's new ER protocol letter we received from his mito doc showcases how fast these kids can decompensate...it also showcases a lot of words that I don't like to utter when relating to Nathan's disease. The hard reality of it is too much to bare at times. This nasty disease makes him prone to going from healthy to the worst case scenario in a very short amount of time if precautions and treatment are not administered immediately when he is sick. So to say that we are constantly on edge every single time he gets sick is a vast understatement.
Nathan has the flu. He was perfectly fine yesterday morning...running around here and laughing and playing...and then he all of a sudden spiked a 102 degree temp with a runny nose. 2 hours later, he was vomiting...the effects mito has on his stomach each time he is sick, causing his motility to slow down to a crawl at best. A trip to the pediatrician didn't give us many answers, but he was able to eat and keep down a popsicle. The flu test was negative, but the ped said that she didn't believe the test since his symptoms had just started, and the test is granting a lot of false negatives these days. We took him home with instructions to head in for fluids if he continued to throw up.
He slept for a while and woke up feeling just awful with a fever heading toward the 103 degree mark. He started vomiting again, so a trip to the ER was warranted. It is imperative that he can not get dehydrated, as that can throw him into a mitochondrial crisis. The ER was full of a lot of scary and stinky and nasty looking stuff going around. Some of the inhabitants of that waiting room had been there for 8 hours. There were a lot of red noses, broken appendages, hurling noises coming from behind the closed door to the community restroom, and people all around with the eerie look of funk written all over their faces. It was skeery...who needs Halloween when a local ER will do just fine for a fright night. Thankfully, Nate's status in the computers at our hospital is always the most severe status a patient can have, so he usually gets back quickly. I did request that we have a purell bath upon entering the next room of our journey.
8 hours later, the consensus is flu. They didn't even run another swab because they said that he had all the symptoms and it was imperative that he get started on tamiflu. We had to wait so long to see if he would drink anything, and when he wouldn't, he was set up for some IV fluids. The tank of fluids should give us some more time to be able to fight this bug at home while the tamiflu does its bidness at kicking it to the curb. He's doing okay today...still high fever, but he is at least talking and doing a lot of sleeping. I'm hoping that he continues to do well so we don't have to make another trip to the land of the funk. And I'm really hoping that we can get back to the days of less worry...the little man has had a really really good past 2 months, and it has been a sure joy to see him so healthy lately. I pray that we can return to those days soon.

Friday, October 23, 2009

Music to my ears


Thursday, October 22, 2009

Photos for Mito: November 7th


Our maiden voyage of Photos for Mito will be in a little more than 2 weeks. Our 10 slots were completely full within about 2 days, and I am still getting inquiries on if we can fit anyone else in for this fundraiser. If all goes well this time around, I hope to do this again in the spring.

Since we are 2 weeks out until the fundraiser, I wanted to mention that anyone who desires to send a donation for the United Mitochondrial Disease Foundation can mail them to me. I am going to be mailing all the money gathered from now until the fundraiser to UMDF on November 9th. Just make your check out to UMDF and mail it to my address (email me for my address if you need it). This is a non-profit organization that was created "to promote research and education for the diagnosis, treatment and cure of mitochondrial disorders and to provide support to affected individuals and families". (www.umdf.org)

Also, I have had a couple of friends who have volunteered to help me out the day of Photos for Mito with checking families in and giving them the required information and such. Since this is an all day affair, I probably need one more helper for a couple of hours. If you have an interest in hanging out and helping a bit, please shoot me an email.

For those families who have a time slot for this day, I will be sending out an email with directions and information within the next week. Let me know if you have any questions or concerns. I look forward to seeing you all in a couple of weeks and thank you so much for helping such a wonderful organization!

Wednesday, October 21, 2009

Wordless Wednesday


Tuesday, October 20, 2009

Life at the sandbox


I laid beside my oldest, trying desperately to coax her cranky butt into taking a nap...which are pretty much non-existent in her world these days. I figured that the extra snuggle time would cause her brain to slow down enough to give her some much needed rest. Read that: I was totally making excuses to get a few minutes of shut eye myself.

Abby: (grinning from ear to ear as her eyes lit up with joy) I played with Andrew in the sand today at recess. He threw sand in my hair.
Me: Did he get in trouble?
Abby: Oh no. It was fine. I threw sand at him too. It's okay as long as Mrs. S doesn't see you. We had a lot of fun together.
After managing a long lecture about "obeying the rules no matter if anyone is watching or not", I couldn't help but reflect on how much she has changed in the past few months. 3 months ago, she was running into arms of our pastor at church and wrapping her lanky arms around his neck. Everything we heard was "Brother David this" and "Brother David that" as she professed her love for him on a regular basis. But that season has seemed to have passed for the most part, and she has moved on to smaller and younger men in her life...specifically, those who still have hair.
I overheard the Absters talking to her friend the other day about the boys in their class, and I felt like an outsider in her life for the first time. She had opinions and likes and dislikes and giggled like a little...well...schoolgirl when talking about her little sandbox friend. I'm still learning a lot each day in the life of mothering kiddos that continue to grow older with each rise of the sun. This week's lesson: If you like someone, just throw some sand their way.

Saturday, October 17, 2009

Don't mess with Texas


I was born in Texas...Amarillo, to be exact. And even though I can't go back this far in my memory banks, I lived there for the first 2 years of my life. I have grandparents, uncles and aunts, third cousins removed, old and new friends all scattered throughout the vast land that is know as the Lonestar State. Its a state unlike any other...where the inhabitants beam with intense pride at the mere mention of the name: Texas. I have always had a soft spot in my heart for this state...that spot grew a bit larger and softer this week.

In Nathan's 20 months of life, we have never had a doctor come into the exam room and start playing with him...until yesterday. We met with Dr. Koenig yesterday morning, and she did just that. She won him over in the first few minutes, and in that instant, she won Jay and I over as well. She saw Nathan as a boy first...and then as a case. Amazing.
The appointment was incredible...it is just so nice to talk to a doctor who knows the intricate details of this disease. There was a lot of information covered in the appt, so I'll try to mention the highlights of the conversations. Dr. K told us that she completely agreed with Dr. Shoffner's assessment of Nathan's biopsy, and he definitely has deficiencies in his electron transport chain in his mitochondria. This is where it may get a little confusing...there are numerous diseases that can cause secondary mitochondrial dysfunction. Due to a number of abnormal labs that Nate has had in the past, Dr. K wanted to run quite a few other genetic tests to make sure he doesn't have a separate primary disease causing a secondary mitochondrial problem. It is one of those deals where Nathan has about half of the symptoms of these other diseases and we need to cover all of our bases by finishing the search for any thing that could be causing his mitochondria to fail. If these tests come back normal, we will assume that Nate has a defect in his mitochondria making it a primary mito disease, and wait for genetics to catch up so we can hopefully find the mutation some day.

For the not so confusing parts...she made Nate run up and down the halls, and he absolutely loved that (minus a couple of falls when he was getting tired). She was pretty interested in his wacky run (for those of you who have seen him run, you know what I mean) and video taped it to show their movement specialist. Her theory on his funny run was either due to overall muscle weakness or ataxia. Hopefully the movement specialist can help us figure that one out.Dr. K said that the only treatment for the mito kids who breathe like Nathan is oxygen supplementation, and we can not deny that since we have seen such a change in Nate while he has been on it. However, upon our request, she did say that it was okay to let him off the O2 some each day to be a little boy. Woohoo!! Basically though, it takes Nathan so much energy to breathe the way he does, so giving him help in that area helps his body as a whole with the energy demand. And with this disease, energy conservation is crucial to prolonging healthy days.

The best news that we may have received was that we could take a breather for a while on the talk of Nate potentially needed a g-tube. Yes, Nathan is having a really hard time gaining weight, and yes, he has been diagnosed with failure to thrive. But, Dr. K said that most all mito kids are smaller than other kids. It all boils down to energy again...it takes an enormous amount of energy for a body to actually grow. With a kid who has sick mitochondria that are not making enough energy, the body is not going to grow at a normal rate. Since Nate's caloric intake and nutritional labs are all normal, adding extra calories for growth may cause an additional stress on his mitochondria trying to use energy to process the large increase in calories. As long as Nathan is able to eat and drink adequately and his nutritional labs are fine, he shouldn't need a g-tube. What a HUGE weight lifted off our shoulders for the time being...I'm telling ya, this kid eats quite a lot and just can not gain weight, and it has been extremely stressful. Dr. K said that Nathan is just going to be small.She gave us a formal ER protocol letter, gave us a better idea on when he needs to be admitted for fluids (she's very conservative on this), upped his carnitine by quite a lot and added a couple of b-vitamins to his mito cocktail, and a LOT of info about mito to give to our pediatrician and other docs. She wants to see Nathan every 6 months. We go back the first week in April and will see Dr. K, have a visit with the immunologist in the mito clinic, and get another MRI performed on Nate. I think we are going to drive as a family for that trip since it is the week of Abby's spring break...kind of make a vacation of it and take the kids to the Houston Children's Museum and the zoo and whatever else.

Before we left the office, Nathan went to tell her goodbye and gave her a hug. She picked him up and wrapped her arms around him, and he laid his head on her shoulder. They stayed like that for quite a few seconds and she smiled and said "Oh, I just love it when they do this!" You can totally tell that she loves these kids with all of her heart, and this is something that is simply amazing to witness. It is humbling how God has directed our steps over the past couple of years. We are so very very thankful that God has led us to a doctor who not only knows more about this disease than anyone we have encountered, but who also seems to genuinely love her patients.We had dinner with a wonderful family who lives outside of Houston last night. This family has 3 boys (and the mom) who all have mito, and the mom and I have talked quite a few times. Her youngest is about 10 days younger than Nathan. It is always so great to talk to someone who knows exactly what you deal with each day. And it is also incredibly encouraging to see how relatively well her boys are doing right now. Sure, they all have their many individual issues stemming from this disease, but they are still just normal looking little boys who LOVE to be little boys! We look forward to seeing them again in April and meeting a few other families in that area.All in all, it was a wonderful trip. We miss the girls so much and can't wait to see them in the morning at church. Nathan is exhausted but doing well. We are tired as well, but really relieved and happy to have found someone who we know and trust can oversee all of Nathan's care from now on. The Lord has been merciful in providing this for us. And we are so thankful.

Wednesday, October 14, 2009

Where summer lasts for eons


Abby's little friend from school came home with us after school so the girls could all play together. Emma has been so excited about her coming over for the past couple of days because any friend of Abby's is automatically Emma's best friend too...in the 3 year old's eyes.
Over the past few months, I have been amazed at how fast Abby has grown up on us...but I have been even more amazed at how fast Emma wants to grow up now. Each morning, Emma participates with quite a few of the other students at our Elementary school in the morning mile. Essentially, students can get to school a half an hour early and run around a track and earn laps...for every 20 laps they run, they get a foot shaped charm for a necklace they are given. These kids wear their necklaces like they are medals and are so proud to show off their accomplishments. I love the idea and am so glad our school encourages it so strongly. For a solid week, Emma begged me to let her walk with Abby and her friends at the morning mile. The mother in me just knew that she wouldn't be able to keep up with the rest of the big kids and would get her feelings hurt, but I finally obliged and let her try it out one morning. The kid LOVED it. She would do pretty well keeping up with Abby and gang for a while, and when she started to lag behind, she just started talking to a new kid and proclaimed them as her new friend. 3 weeks into going to most of the morning miles, Emma has now become friends with about a quarter of the milers. And I have to admit that it is quite hilarious to see this itty bitty kid with really short legs running along with these big kids each morning. She's a trooper, that girl.
Anyway, the girls had a blast today with their school friend, and we brought out the slip-n-slide for probably the last time this season...or maybe that is wishful thinking that our cooler temps this weekend will stay. It was a fun day.
Hopefully I will have more to say next week, as my mind has definitely been overflowing with so much crapola lately with everything going on this month. We leave tomorrow to fly to Houston, and Nathan's appt. with our mito doc is Friday morning. I am looking forward to seeing her and getting a good idea on some direction with Nate's care...specifically his O2 usage. We are also meeting some friends while there, and I am super excited about that as well. I'll definitely update next week.

Monday, October 12, 2009

Just more pictures


Nothing much going on around here right now, and that is so nice. Trying to prepare notes, records, directions and whatnot for our trip to Houston later on this week, so my mind is definitely not on blogging for the time being. In fact, my brain is so full of mulch that I can't even talk straight right now. I'll be glad when this week is over.

For now...have some more pictures from our trip to Kentucky last week:

My kiddos with their great-grandparents from Texas...little man did NOT want his picture taken that morning:
Abby showcasing her quintessential fake camera smile with Grandaddy:

Nate signing "thank you":
One of my favorite pictures from the week...Nate and his Papa:And then with his Grammie...did I say how much he loved the undivided attention all week?
A view at that Ferrell house...many memories are made around that kitchen table. Many memories.
These two are seriously inseparable. Nathan will even say "Abby hug" now as he reaches his arms up for her embrace. It's quite sweet and melts our heart to see the kiddos loving eachother so much:
The gang before our trip back to the deep south:

Friday, October 9, 2009

I miss wearing those cool mornings


Phew,it has been quite a while since I updated but it has been a nice little break from everything. Our trip to Kentucky was wonderful. It is a long drive, but the kids do pretty well as long as they have a constant stream of Disney movies playing. This was the trip where I realized that we are indeed getting old...I am still sore from being cooped up in the van all day long on Wednesday.The wedding was gorgeous, and Emma did indeed walk down the aisle. It took quite a bit if coaxing and a lot of giving her the stink eye, but she did it. My sister was a beautiful bride and had a handsome groom to marry...all in all, it was a perfect day for them.As a gift from their Aunt Ashley, the girls got to experience their first manicures and pedicures. They simply loved it, even though they had to sit completely still for longer than they have ever done in their entire lives. Emma chatted with the nail guy about everything under the sun...her stuffed animals, her dress for the wedding...and then she suddenly stopped talking, looked at the guy rather peculiarly, and asked "You from China?" He chuckled and told her that he was from Cambodia, and she gave a satisfied nod and kept on talking about her stuffed giraffe. That kid is a hoot.

My other sister, Bethany:
It was so good to see Hailey, my neice. She is doing really well right now and just growing so fast! She turned a year old last month. Miss Hailey has the sweetest smile ever...I wanted to take her to come and live in Florida. I miss that kiddo! It was also great to see both sets of my grandparents. My grandparents from Texas were finally able to meet the Nafey magic. It was just a great family reunion time. Look for future blog posts for some pictures of all the grandparents and great grands.Nathan did really well on this trip. We let him run around without his oxygen from time to time, and he did relatively well. However, he paid for it with exhaustion and crankiness on Sunday and Monday after being off for a good amount of time due to the wedding and reception and such. The little man loved the extra attention from his grandparents all week.
Abby was finally old enough to be trusted completely by herself on the go-cart at her Grammie and Papa's house. She loved driving that thing around...much to the chagrin of her littlest sister who was rather ticked off that she wasn't quite old enough to maneuver it with her own two hands. My jaw about hit the floor when I peeked out one day to find Abby driving the tractor around the yard instead of the go-cart. Surely no kid of mine is old enough to handle a tractor. She loved driving the tractor...even more than the go-cart. I sure am glad the kids have a father who lets them experience such things because their mama would never let them near it!
All in all, it was a great visit...and it was so wonderful to be able to experience some fall weather again. It was fun to get away and see everyone for a while, but it is also great to be back at home and in the swing of things once again. We hit the ground running as soon as we made it back to the deep and HOT south...last night was a book fair at Abby's school and then her soccer game, where she scored another couple of goals. Next Thursday, Jay, Nate and I will fly to Houston, TX for a couple of days to meet with the mitochondrial specialist out there, so I am currently trying to get everything together for that trip. October is a CRAZY month for us!

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