Celebrating Inchstones: Some pics

Thursday, September 9, 2010

Some pics

Oh so many things are going through my wee little mind but I'll spare you and give you mostly pics tonight. I will say that the next few weeks are gonna be jam packed and I'd be grateful for any prayers for my sanity that you can offer up.

On Monday, Sept. 20 I'll have Asa's IEP meeting. I'm sure this will be fine but my hands get all sweaty just typing these words. There is so much to cover and I'm having a hard time staying focused and retaining information these days! Ok, I've BEEN having trouble focusing and retaining info! lol

On Tuesday, Sept 21, we are having a mito awareness night at Chick-fil-A (on Vann Drive) for you local folks. This seems to be easier than the Maggie Moo's event last year but again, it requires planning and forethought....hard to come by here. We will be selling t-shirts that night also!

On Saturday, Sept. 25, we are having our semi-annual rummage sale. People have been so kind and generous to donate their Goodwill stuff so that we can add it to our yard sale collection. If anyone local has anything they'd be taking off to donate, we'd sure appreciate it if you donated it to Asa instead. We'll come pick it up and everything!

Ok that was a lot more blah, blah, blah than I intended!!! Pics already! Oh, I should say though that I imagine myself a decent photographer but turns out I'm not! I have a decent point and shot camera but I lack lighting skills, setting skills, prop, editing, creativity and well, everything else! So my cell phone has been my go to. I know sad but true. I'm sure there is a support group for people who document the most special of life's moments on a cell phone camera!!! Ok, ok, pics......

Sunday, Labor Day weekend. We had Sunday lunch with my mom, per the original agreement we set we our family only had 2 little ones (we now have 8)! I'm sure she wants to renegotiate the terms but I'm not having any of it!!

Anywhoooo, after being a total noodle for a good week or more, Asa completely rebounded and had a blast! Here are the pics of him eating my ice cream cone that I talked about in the last post. So cute!!! You do realize more got on his shirt than in his mouth, right!

And him in his little Power Wheels that his OT let him borrow. I've been looking for deals on something similar for him birthday.

And I've shared before how he loves bananas. Not really the eating of a banana but just holding one and scooting around with one. At feeding therapy on Tuesday he did eat some of one. This isn't new but what was new is that he opened right up for it. He usually resists our first attempt at most anything. I usually "help" him with a bite or two first. Not the banana on Tuesday. So of course I bought some more at the grocery store that day.

And today for breakfast Asa had some oatmeal and then his banana. He didn't even hesitate. He opened right up again. And then he wanted to hold the banana. Now you may not realize that with his low tone comes low oral tone. He doesn't bite. He doesn't really chew. Mostly stuff is pureed or it melts. But he started self feeding the banana. First with licks and then even a few bites. And the fact that he wanted to touch and hold the banana is progress enough! Of course I had my phone nearby so you get some pics! YAY!!!

3 comments:

Anonymous said...: I love the picture of him on the Power Wheels. He looks like a little speed demon, lol. Congrats to you and him with the banana. I know that is a big step for him. Alizah still doesn't like eating them because of the texture. I will keep you in my thoughts the next few weeks and will be sending you what sanity vibes I can ;o); September 10, 2010 at 8:55 AM
Debbie said...: he looks like he is doing amazing!

That is awesome how he is eating...
huge steps I am sure!; September 10, 2010 at 11:19 AM
gg said...: He looks so happy and proud of himself in all the pixs....what a little cutie!!!!!; September 10, 2010 at 2:00 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!