Celebrating Inchstones: BREAKING NEWS......READ ALL ABOUT IT!!!!

Tuesday, May 29, 2012

BREAKING NEWS......READ ALL ABOUT IT!!!!

Did the headline get your attention?! I hope so because I have a huge......HUGE.....announcement! I feel like the blog takes a back seat to Facebook. I often post pics or quick updates to FB before I post a blog about it. Today I saved some good news for the blog......and the dozen or so folks I saw this afternoon! I don't have that much restraint people!!!!

Asa had his first ESY (Extended School Year) physical therapy today. Asa qualified for summer school but it would be more trouble than it's worth so I opted to just have his therapies. They are done at the therapy center where he received all his therapy from birth-3. He gets to see some of the folks that worked around him all those years.

So today was his first PT session. Melissa had never seen him before and only saw him becaus ethe regular PT was on vacation this week. I almost refused the therapy of summer school too because Asa is so nervous around strangers and last year he was just getting comfortable when the session was over! Asa has done great going right back with the therapist though!

When I picked him up this afternoon the PT asked if Asa takes independent steps at home. "Uuuuummmm, no. Why did he take steps for you?" was my reply?!!!! Guess what? He DID walk for her!!!!!! She stood Asa up facing her and held him by his shoulders. Her goal was to let go and see how long he could bear weight on his own. When she let go though, Asa walked towards her!!!!! Awesome!!

We got home and I tried reenacting it. I stood him facing me, held him by his shoulders and then let him go and he walked to me! He repeated it several times! I couldn't wait for Barry to get home from work! He did it for Barry too! He is very mad and freaked about being on his own (and he squeals and squawks when you pick him up just so you know he hates it) but he CAN do it! He can walk!!!!! He's wised up tonight though and will sit down when I hold onto his shoulders! He's too smart!

Anna has video but I'll try to make a better one tomorrow! It's amazing!!! God is so good!

4 comments:

Debbie said...: *LOVE* this!

What a Rock Star!; May 29, 2012 at 11:41 PM
The Martin Family said...: Congrats and then some! You both have worked so hard to get here and I know it's an amazing feeling to accomplish something SO HUGE. Congrats Asa AND Kim!; May 30, 2012 at 11:21 AM
marie clare said...: AMAZING!!! Its really happening Kim, its really happening!! so happy for you and proud of Asa.; May 30, 2012 at 12:55 PM
Clara-Leigh said...: I am SO SO SO SO SO SO SO SO SO THRILLED FOR YOU ALL!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
This is HUGE HUGE HUGE HUGE!!!!!!!!!!!!!!
WOW WOW WOW!!!
And just so you know, Garrett achieved about 3 of his biggest milestones in therapy when I wasnt there FIRST!!! Oh well, you still get to take the fun home and enjoy it!!
I so know the joy you have shared with us, and I am so thankful!!!! Huge hugs and high five!; May 31, 2012 at 3:28 PM

Post a Comment

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!