Celebrating Inchstones: Happy 4th Birthday Asa!

Monday, October 10, 2011

Happy 4th Birthday Asa!

Asa turned 4 years old on Friday, October 7th. Our schedules were jam packed Friday and Saturday so we had a birthday lunch and party on Sunday. I don't think Asa minded! We had a Birthday Burger Bash. This is the first year Asa has had any desire to really eat. I love it when Asa wants, really wants, to eat! We battled for so many years to get him to eat just a few foods....just applesauce or yogurt. Forget textures or anything that required chewing. If it hadn't been for Asa's awesome feeding/speech therapist I'm sure I'd given up and he'd be 100% tube fed today!

We did a Burger Bash because on our second visit to Houston to see Dr Koenig, I asked about the feeding and the tube. I asked if we should just give up on eating and embrace the feeding tube. It take much less precious energy if Asa didn't have to worry about eating but just got his nutrition from his tube. Dr K told us not to give up because "when Asa is 16 and wants to grab a burger with friends, he'll thank you"! Wow, that gave us such hope and we trudged along! And now at 4 years old Asa can eat a burger.....he choose not to but he can!

Here's the party videos first. I had been playing "happy birthday" with Asa all week so he wouldn't freak out when we all started singing to him. I was also hopeful that he would blow out the candle since he can blow a pinwheel......with his nose! Turns out the candle REALLY freaked him out! That's why he pushes the cake away at the end of the song. He expected a lighted candle.

He did finally get into the cake! He ate and played and ate and smeared and ate some more! And yes, all that cake did make him sick! I'm not sure that he isn't still feeling the affects of the cake!

This cake was so cute in the order book. It was made with fondant and was bright and colorful. Oh well, I still like the idea.

Of course he didn't want anything to do with his burger party! He did have a great time with the corn on the cob! I should post all those pics. He just kept touching and humming and picking it up above his head. Next year we'll have a corn party!

Making a dent in the cake!

And then the coming down from the high! He was resting on the couch with me......

But feel asleep with Daddy! Man, birthday parties are hard work!

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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!