Celebrating Inchstones: Second verse, same as the first?

Monday, October 25, 2010

Second verse, same as the first?

Asa starts his second week of school tomorrow! I'm hoping drop off gets even better. I don't want to hover but I also don't want to dump a puker on them and run! Not yet anyway!

Asa is struggling a bit. He has been soooo constipated. It is awful! The week we were on fall break is the last time that he was able to go without the tears, red face and hard poop! We've added miralax every single morning. We've added extra water. We've stopped apple juice and added white grape juice.

Of course if he is full of poop, he isn't eating as well and certainly isn't digesting well. Lots of puking!

And if that is TMI for you then you shouldn't read this next part!

Asa had a Dum Dum sucker while the big kids did homework. He also did a marble size poop. Since he was all sticky and dirty, I stuck him in the tub (kitchen sink) while I started boiling chicken for supper. I washed him and let him splash and play. Anna was unloading the dishwasher and let him (yes I blame her!) pull Cade's bowl of leftover cheerios into his tub! He was a little freaked out about the white tub water and floating things! I was trying to get the rest of the chicken taken care of and figured another second wouldn't hurt. WRONG!!! Then he started trying to poop!!!!

Can you picture it? Me with slimey chicken hands, Anna not about to touch the gross water or baby and Asa sitting in a sink of watered down cheerios and poop! Thankfully I was laughing not yelling! I got Asa out and was dealing with him puking when Barry came in! Bless his heart!!! He did the clean up!! Again, bless his heart!!!

Unfortunately that still wasn't enough poop and Asa is still trying to go! We have a GI appt on November 17 and that can't come soon enough! I feel like going back to the pump for pedisure feedings and letting him eat orally and drink the juice. Don't kill me Jill!

He is trying some new foods. We always let him hold our French fries but he never puts them in his mouth, just holds it. This weekend he started putting them in his mouth and fussing for more!! Today Anna was eating a dorito chip and he started fussing. She gave him one and after a while he put it in his mouth!! She even showed him how to lick his fingers!! We joked Sunday about the steps we take to get him to try a new food. He touches it, holds it, smells it, kisses it (lets it touch his mouth), lickes it and if we are good, he eats it!!! For nearly each bite!! You see the need for the feeding tube?! He is
trying much more so I guess we are doing something right. Just keep on
keeping on, I guess!

1 comment:

Sarah said...: ugh! poop and puke... two of the MOST COMMON symptoms/worries of children with special needs. Only moms like you can truly read and understand why we seem to incredibly obsessed with what goes in and how it comes out of our children's bodies :) so sorry he is struggling with his motility lately :(

Q is actually puttin on lots of weight with her new formula, but unfortunately, this comes at a high price of pain for right now with serious bloating and lots of pain. BUT, she is finally getting some really good nutrition. It's a price we pay for right now to keep her strong enough for her surgery.

anyway,Asa is an amazingly cute little boy; October 26, 2010 at 2:04 PM

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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!