Celebrating Inchstones: A great day

Friday, February 24, 2012

A great day

Asa had such a great day Thursday!

He started off the day by getting out of bed by himself and scooting out of his room alone. When he got to the living room he just started playing with his toys. It was the most adorable thing ever! He usually wakes up and kicks the wall until we get him up. He's rarely fussy and will play alone but he usually stays in bed. Occasionally he will get his feet on the floor but will hang onto to the bed for dear life. For him to get up and come play is wonderful!

He had Aquatherapy and had a pretty good time. He is getting so used to the "games", aka therapy, that he gets short tempered quickly! I'm sure that's a good development skill but one that makes more hoops for us to jump thru! :)

Speaking of hoops.... His therapist used a hula hoop to get him to walk without holding hands. At first this was fun and worked wonderfully but it didn't take long for him realize he was working and he loudly voiced his objection! We tried it outside at home and the same thing happened. He took off and then realized I wasn't holding him and he got MAD! He has got the skill but now he needs the motivation!

After therapy we visited with his teacher from his other school. I know Asa is more suited for the school he's in now and those teachers are great but I sure do miss his old teachers!! Asa went in happy and started playing like old times. He really seemed big in the class to me. I guess seeing him with the bigger toys from the new class made him seem older. I guess that's the point of pushing him to grow and develop, huh! He had lots of hugs and was super sweet! I can't wait to go visit again!

I'm just stunned each time we get a teacher or therapist who is so amazing! Maybe most are great and my expectations are low but I'm always nervous. And yet each time it doesn't take long before I can see how God directed these folks into our lives. I feel so blessed by each person who has loved and helped us in our journey so far. I hear that Asa touches others but I'm being so touched by seeing how others love my boy! We are blessed!

After school Asa and I didn't even come inside. It was almost 80 degrees and wonderful. The wind was blowing but Asa didn't even mind! I can't wait for more days like these! With Asa's new strength, stamina and desire to explore we should have many adventures! :)

1 comment:

Anonymous said...: I love to read these wonderful reports! I sound like I am repeating myself but it is what needs to be said again, "Wow! God is SO good!" May He continue to bless your whole family! Love, Mrs. Margaret; February 25, 2012 at 10:55 AM

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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!