Celebrating Inchstones: Exciting things happening

Thursday, April 15, 2010

Exciting things happening

I know it has been a while since I posted. We have been super busy and I've felt icky, I guess the pollen. I went to bed early 2 nights and that is when I usually do my posting. So much has been going on and I need to do about 3 posts but I'll just give you the best news tonight!!

We changed Asa PT up again. I needed to free up some time. We've been going 2 days a week for 30 minutes each and while Asa has benefited, it is hard. With summer coming up I didn't want to be gone 3 days in a row for therapy. So we bumped him back up to a single, 45 minute session. We'll see how it goes but I hope Asa's able to give us some good work and not tire out.

So today we went to PT. Asa has loved to be up and walking and he walked part of the way into the therapy gym. Walked, with support, of course. But Ms. Nancy had a little walker out for him to try. I admit, I wasn't a believer it would work. What do you think? Do you think he held onto that little walker? Did he grin so big and start stepping? Did he push the walker out in front of him with very little support? Did Asa do it......

YEP!! He took right off! At his best, Ms. Nancy was only holding him by the back of his pants!!!! He went back and forth across the therapy gym 3 times. And how amazing that I had my camera with me! He got tired and I'm not sure how long he could go but I was amazed at his first try!!

Some other good things, Gracie got her hair cut off. Ball season has started. Gracie played 2 games Sat. and one tonight. They lost 1 and won 2. Cade played one game on Sat. They won. Asa saw the ped for a well-child (I could do a whole post on that in itself!). Dr. Woods was impressed with his progress! Some bloodwork came back good, still I can't help but question.

We are having a yard sale this weekend. Hopefully we get enough to cover our trip to Houston.

So see it's been crazy here!!! And it doesn't look to be ending anytime soon!

6 comments:

Christina said...: That boy is going to be walking on his own in no time; I just know it! How exciting. It literally brings tears to my eyes to see all his progress! I'm so excited for all of you. Love you guys!; April 16, 2010 at 9:21 AM
MamaHam said...: Awesome Job Asa!; April 16, 2010 at 12:30 PM
marie clare said...: WOW Kim! thats amazing!!! WTG Asa.; April 16, 2010 at 8:13 PM
Heidi said...: WOW< that boy is getting so close Kim, I just know it! I hope the yard sale is a success! hugs--
Heidi & Jack; April 18, 2010 at 5:50 AM
Christy said...: Oh.my.goodness. !! I had to look at those pics twice to make sure what I was seeing!! Yay, Asa!!

To answer your question about the lactase def...I have no idea what it points to!! Another thing to try and figure out.

I am so happy for Asa. Does he wear a benik vest?; April 19, 2010 at 10:56 PM
gg said...: I've been out of town, so I'm just catching up. WAY TO GO ASA...Kim, I'm SO happy for your little guy and the rest of the family!!; April 22, 2010 at 7:43 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!