Celebrating Inchstones: Happy Day!!!

Friday, February 26, 2010

Happy Day!!!

Here are some pics of Asa yesterday at speech. He loves, loves, loves the clipboard!!

I emailed the GI about the reflux and Zantac. Haven't heard back. All emails become part of Asa's file so there is proof that we stopped the Nexium in Nov. and it didn't work. Plus my account of this time.

Overall he did OK today. He got sick 2 times but not puking. You can just tell it hurts him though. Not fun.

We played a new game on the treadmill too. I put a ball in front of Asa and as it rolled towards him he'd kick it and it'd roll right back to him!! He thought this was the funniest thing! We even set him up again tonight to show everybody else. In all he was on the treadmill for 10 mins. today!

And for the best news ever.....Asa had a record eating day!! I made him Cream of Wheat. Now I have to confess that I've never had this before. I love grit and oatmeal but Asa won't eat either of these. He did eat the Cream of Wheat though!! I mixed in some fruit babyfood. He tried it at all 3 feedings. In all he had 5oz!! I'm so excited about these 5ozs!! I'm mostly excited because he tried it each time! And each time he tired of it I gave him choc. cheerios and he gobbled them up!

And at this exact moment he is trying to stack corn on the cob cobs! I kid you not!! He is touching, playing but not eating corn on the cob!!! Talk about texture! I was eating mine and he kept reaching and whining. I can't believe he wanted to touch it. This boy is unpredictable!!

Oh and this morning he had just had a rough reflux moment and was very clingy. I finally was able to put him down and sneak away. Then I heard him scooting around. I looked and he was headed for Cade's room. I turned away and heard him scoot on in and shut the door behind him!!! He shut ME out! Too funny!! The only problem was that he stinkied and was sitting right behind the door. I couldn't get in!!! I tossed some toys in and away from the door. When he scooted for them I was able to open the door!! I better be careful how much freedom I give him!!!

So that was our happy day! I know I've been such a downer lately! It gets tough to watch him struggle so much. And then it affects the rest of the house!

And I've been asked several times how to comment on this site. If you look below this post, it'll give the time I updated and say "0 comments". You should be able to click on that and leave a comment. If you don't have a blogger account, just sign in as anonymous and leave your name with the comment. I still check the CB and I've tried to post some of the copied updates but it is soooo sloooow for me! I haven't even been able to leave comments for some of my favorite people on their CB. I still blame dial-up! :)

Hope you all have a great weekend!!

4 comments:

gg said...: Happy, Happy, Happy Day. Sounds like you and Asa both had a great day!!; February 27, 2010 at 1:17 PM
Anonymous said...: So glad there are happy days, and funny moments for the Wilsons! Thanks also for info on how to "comment". Mrs. Margaret; February 27, 2010 at 8:29 PM
Kim and Asa said...: Mrs. Margaret, you aren't the only one who had questions on how to comment! I'm glad you got it, I love to hear from you!! It makes me smile to read all the comments from everyone!

Kim; February 28, 2010 at 9:06 AM
Christy said...: Great pics...Asa looks like such a big boy sitting there!

Your blog looks great and I am enjoying it...I'm thinking I like the blogs better than CB.

Thinkin' of and prayin' for you all!

Christy; February 28, 2010 at 4:23 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!