Celebrating Inchstones: Sick...or NOT?!

Friday, August 12, 2011

Sick...or NOT?!

I took Asa to his pediatrician yesterday. For the last few weeks he has been really tired and just a little off in general. He hasn't had a fever or a cough or a runny nose, just not himself. I waited it out for a while then school started and his teachers started commenting how tired he was with the new schedule and I finally made an appt thinking that he'd snap out of it as soon as I had an appt! Well, he didn't snap out of it so I took him in.

It's kinda difficult to explain and I'm sure Dr. Woods thought I was crazy. First of all, Asa only goes to school 2 hours a day. He hasn't started therapy yet so he isn't having to do a ton of work although his teachers do put him in the gait trainer or the mobile stander. And get this, he tolerates the rolling stander better than the gait trainer. He'd rather be standing with his feet and legs all strapped in and pushing with his arms to roll around than in a gait trainer with a seat and walking around. Anyway, it's basically just playtime and he is DONE after a hour and a half or more!

Secondly, this started before school. 2 weeks before school. He started sleeping til 10:30 or 11 every morning after going to bed at 8:30 or 9. And then he didn't want to play during the day, he was happy to be held or to just sit on the couch with a book or in the highchair just hanging out. Since school started he's gotten up at 10:30. Eat breakfast, get ready for school, I drive him to school at 12, pick him up at 2, pick Anna up and we're home by 3. He them lays on the couch resting till Cade and Gracie come in at 3:45. Still he really just hangs out on the couch. Yesterday he laid there playing with his feet till 5 or later.

I guess it doesn't sound dramatic, and it's not, but it's definitely not his normal. His ptosis is also very noticeable in the afternoon and he has dark circles under his eyes. He is clingy and really just wants to lay around holding your ear! His motility has slowed too. He is having several gagging and nauseated spells a day. He seems be have gotten better at fighting it off though and we haven't drained as much as we were before but he is pretty miserable when it hits.

So I thought this was just a new normal for him but then I realized we'd messed with his diet this summer, he could be anemic. Or his ammonia could be high. Or he could be sick somehow. And then my mind wonders to the BIG stuff it could be! Thankfully it doesn't look like it's anything big! But it's also not anything small and fixable! Dr. Woods ran all kinds of labs and everything looks fine. Not perfect but only off a tiny bit. So I'm back to just be crazy and worried! I guess it's just a looong down time for him.

Asa did really well at the appt. He only cried when appropriate, he gagged at the throat swap but didn't puke, he gave the Dr. a high five and we were there for 2 1/2 hours! He did ALOT of sink playing and I have a cute video but I haven't loaded it yet....sorry! After the blood draw (which only took 1 stick, thank heavens!!!) I was gonna distract him with cartoons on YouTube but he doesn't really care for cartoons so I thought of a mito friend's blog. She recently posted a video that I hadn't watched so we turned to her kiddos. Asa stopped crying immediately and after only a few seconds of watching Emma laughing, dancing and talking, Asa started signing "love" over and over! How precious is that!!! We had to watch it 3 times. He also liked watching his own videos! Lol!!!

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Asa's story

Asa is the 4th and youngest in this family. We thought he'd come into this world and our lives would flow right along as it had the other 3 times we brought babies into this world.

We were wrong! After a normal pregnancy and delivery, Asa had to be sent to the NICU because he wasn't sucking, blood sugar dropping, floppy muscles, exaggerated startle reflex and jaundice.

He stayed 5 days were he learned to suck and eat enough to come home. He began nursing well but would scream in pain 30 minutes after each feeding. He had so much mucus and drooled so much. He had a terrible rash on his face. He wasn't making eye contact and was not hitting any milestones.

I kept taking him to the pediatrician but got nowhere until his 2 month checkup when he had only gained one pound since birth. That earned him an appt with a pediatric GI and a change to Neocate formula. Odd gasping spells and eye rolling got him into a pediatric neurologist before the GI appt. The neurologist (he was actually the head of the pediatric neurology dept) personally walked us over to the GI clinic and sat us in an exam room. That kinda makes you worry! That is when we really got the ball rolling. Asa was 3 months old.

At 4 months he was admitted to Vanderbilt Children's Hospital. He stayed 8 days and had a NG tube inserted so we could feed him directly into his stomach. He kept this for 2 months. Also during this time he had an EEG, CT scan, MRI, upper GI endoscopy with biopsy, flex sig, numerous blood tests, a genetics consult, and an ophthalmology consult and many other pokes and prods! So began our relationship with specialist!!

After 2 months on the NG tube, we removed it and tried to get Asa to eat enough to gain weight. He did OK for a little while but by 9 months old, he was fighting each feeding and not gaining weight despite being on Neocate formula at 30cal/oz. The decision was made to have a G-tube put in. The G-tube is a feeding tube that is inserted directly into Asa's belly. He can eat orally but won't so he gets feed into his belly.

Since he was going to have to be sedated for the surgery, it was agreed he should have a muscle biopsy at the same time. By 9 months he had finally began making eye contact. He smiled some but not very social. He was still very hypotonic (floppy) and didn't even have head control. Something was obviously going on with his muscles. All of his brain scans had been normal.

In Nov. 2008, when Asa was 13 months old, we found out the results of the muscle biopsy. Yes, it took 3+ months to get all of the results! He was diagnosed with Mitochondrial Myopathy. He is deficient in Complex IV for all of you medical junkies out there.

What this means is that his cells can't make enough energy to fuel his body....specifically for him, his muscles and GI system, that we know of. If his body has to burn energy to fight off infection, or a stress, then he looses energy in another system. Mito is a progressive disease with no treatment or cure. We try to keep him as healthy and happy as possible. We use the feeding tube to keep him feed so he doesn't have to struggle there. He takes numerous supplements and vitamins in the hope that they will keep him cells healthier. We check his eyes, hearing, heart, kidneys, liver, brain and lots of blood work yearly. Mito can affect any system so it is important to have baseline and watch for changes. He has a GI, neuro, geneticist, optometrist, ophthalmologist, cardiologist, developmental ped, regular ped and a mito specialist.

He gets OT, PT, speech/feeding and a home teacher weekly. He has some sensory issues with touch, sound, taste and texture. This plays into almost all areas of our lives! He is still very hypotonic but gained head control at just over a year (right after we started supplements!). He learned to sit when placed in a sitting position at 18 months. He still can't get into sitting alone. He learned to bottom scoot at just over 2. He does not crawl or walk.

He knows the signs for "moma", "daddy", "more" and "all done". He can show them when prompted but we are still waiting for him to initiate. He waves "bye-bye" and points all the time now. He loves to take a bath and water in general. He has a contagious laugh and can flash the most flirty grin ever!

We learned, with Asa, not take the small things for granted. Each smile, sound, word, bite or even trouble!! You just never know when they might not be so easy to come by or even if you'll have them at all!