Celebrating Inchstones: Let the shopping begin!

Wednesday, April 28, 2010

Let the shopping begin!

I found Asa a new toy yesterday. I know, I know, how often do I NOT find him a new toy, whether I buy it or not. It is just so much fun to watch him explore and sometimes the only way to do that is to buy it and bring it home!

Asa loves, loves, loves shopping carts. Most of the time he is in his chair and I just load it up. Sometimes I push his chair and pull a cart. Sometimes I let him sit in the cart, or I make him a bed in the seat part, but there is a cover and 2 pillows to keep him up. The point is he loves carts but rarely gets one! He'll reach out and try to grab other people's carts as we pass them in the aisle. And that is alot of action for a noddle guy!

I think it is the allure of the metal and the holes in the carts. I've looked for baskets or desk sets made like a cart but to no avail. So I was super excited when I was cutting through a toy aisle in Walmart yesterday and saw this cart!! And it was cheap. And it might help him walk if he'd hold onto the handle and push.

Asa was asleep in the cart (sleeping off a crash :( ) when I got it so he wasn't as excited as me. I'm not sure if the picture of a cart would have been too exciting either. So we get home and I start putting it together. The basket came in 5 pieces and Asa was super excited over these! He scooted over and held them up to his face.

As the basket was taking shape, he tried to scoot into it! He put his feet in it and bent his head over to take a closer look! He loved the wheels and spun them. I was so excited that this was gonna get my boy walking!

Unfortunately, by the time I got it put all together and stood him up for a trial walk, he had figured out my plan and wanted no part of it! He made that clear! Later on I got him to walk to a little bit but he is much happier just playing with the basket part! Oh, well, maybe he'll be more open to shopping next time!

Funny thing...Gracie was so excited too. I find tons of Asa's stuff in her room. I guess it is the fun of something new. She'll take it to her room but baby toys aren't very interesting so she abandons them!

I have a special prayer request. There is a little boy from Texas who was just diagnosed with Mito. His GI system is severely affected. Even before they had a diagnosis, he was on the transplant list to get a new small bowel and colon. Cooper got his call this week and had the transplant yesterday. Please pray for an uneventful recovery. It seems that mito doesn't like to play by the rules and things can go from good to bad on a dime! Please pray for this family as they are separated from the other children at home in Houston. This will be a long recovery and they need all the prayers they can get! His mom has a blog here and a little more info about the transplant.

Oh and didn't Anna do a good job as my photographer! The batteries kept running out and she'd had to swap them out. She is one awesome girl!

3 comments:

MamaHam said...: So cute!!! I wished we lived closer...I think Ethan and Asa would just love each other!; April 28, 2010 at 3:13 PM
gg said...: What is it with these boys and carts?!? Bricen loves carts as well. He's always going to other peoples' carts and trying to push them!!
It's SO exciting to read:

"And it might help him walk if he'd hold onto the handle and push."

What a blessing that Asa has gotten to that sentence (you know what I mean)!; April 30, 2010 at 2:13 PM
Kim and Asa said...: I know Cheryl! I thought about that when I typed it! This time last year he was just mastering sitting! WOW!!; April 30, 2010 at 9:51 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!