Celebrating Inchstones: Changes!

Thursday, December 8, 2011

Changes!

I'm not a huge fan of change. Even good changes take some adjustment and I kinda just like a nice smooth hum kind of life! I'm sure this makes me seem pretty boring and even down right depressing to some of you! That's OK by me though!

Asa's life is kinda like the movie "Groundhog's Day". He goes to bed about the same time, wakes up about the same time, eats the same things at the same time....very routine. When there is a change in the routine I can gaurentee something is stirring. Sometimes its a bad thing like a cold or bug but it can also mean a development surge.

Recently Asa tried to change his sleeping routine. He was horrible going to bed. He was up hours later than his norm. He was restless and stirring in his sleep. He got up this morning before 5 am and from the looks of things he'd been up a while just playing in bed. He has also stopped eating. He will only take his Elecare formula by mouth. He has some interest in food but not an appetite or huge desire for food. He had been doing so well too! :( He is more gaggy and constipated too. Just not a happy tummy.

For a while I watched these signs and waited on the other shoe to drop. He did get a slight stuffy nose but nothing horrible. No other signs of sickness.

But he has had a big surge in some developmental skills! He got out of bed and scooter to his door on Tuesday.....first time in months and only the 3rd time ever. He is much steadier when walking and holding hands. And don't forget about using the adult walker on his own! BTW, he still won't use the kid size walker at school! He stood alone in a chair at the table while he watched it snow. He played outside Saturday as we hung Christmas lights. He rode in his power wheel car, walked in the gait trainer and scooted all over. He even scooted out of the yard and into the taller weeds in the tree line! He was on an adventure! He is doing some really hard work in aqua therapy!

So it seems that while his body is working so hard in these gross motor areas, his body has to give a little in other areas. Its typical mito, actually. Only so much energy to go around! Now I could be wrong and he could wake up in the morning sick but so far so good. This seems to just be one of those happy times of change!

And in another area of change.... after Christmas we will start looking at other school/class placement for Asa. He has really outgrown his class. I love his class, his teachers, his school but just like a moma bird pushes the baby bird out of the nest, its time for his teachers, therapies and us to push him beyond his comfort zone. Please pray that we find the right fit. That we have wisdom to make the right choices. And this is nothing that has to happen now. We just need to reevaluate! I'm praying this is another change that while it may not be fun, will turn out great!!

No comments:

Post a Comment

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!