Celebrating Inchstones: A day out after the snow!

Wednesday, February 3, 2010

A day out after the snow!

Yay! The kids go back to school tomorrow!!! Actually, I can't complain today! Gracie went with me and Asa to therapy. When we came home, Cade and Anna had the house clean. They dusted and vacuumed!! It really looked great!!! And I really enjoyed Gracie being with me too! Maybe I'll homeschool.....oh, wait, I'd have to teach not just make them do chores! Nevermind!!!

Asa used his Theratog suit again. He walked on the treadmill with it on. Then he used the same harness and walked around the therapy gym. Nancy said his steps are good. I think they are tiptoes and side steps but she said that is to be expected.

We also chatted about his bottom scooting. I'm hesitant to be too excited because he'll always do what is easiest for him. If it is easier to scoot and he can get where he wants, then why would he try to crawl and walk? Nancy said not to worry so much about it. This is first time Asa is able to want something and go for it. We have noticed that he started pointing at things during the same time he started scooting. Maybe it was just a development boom or maybe he realized he had options!! Nancy even said there is a train of thought that has little bittys like Asa in power chairs!! I can't imagine that. Although he'd be able to chase the big kids!! She wasn't suggesting it for Asa, just that conventional wisdom would say giving them an easy way to move would stop their development and that isn't the case. Interesting....I think I'll do some googling next!

Asa had his applesauce and beenie weenies at supper tonight. He ate alot. We stopped the motility meds so as much as I want to push, I'm not. If he gets sick we need to know if it is from lack of motility or from eating something that disagrees with his tummy. He has been gaggy the last 2 days and even got sick tonight.

I treated Gracie to McD's for lunch today. I plugged Asa's feeding tube up and then sat down to eat. When I looked over at him, he had part of the tube in his mouth chewing on it!!! It was so funny to see Gracie eating her burger and him eating his feeding tube! I got excited thinking maybe he wanted to eat so I pinched off a fry. When I offered it to him he gave me the funniest look! He was happy with what he was having, thank you!!! It was so funny!

I copied this quote from a friends Facebook status a few days ago. I really love it so I thought I'd share it here!

"God doesn't give children with special needs to strong people; He gives children with special needs to ordinary, weak people and then gives them strength. Raising a child with Down syndrome, brain injury, CP or other special needs doesn't TAKE a special family, it MAKES a special family."

1 comment:

Anna said...: I "found" you on the internet while looking for a used Rifton gait trainer.(parent to parent discussion) I enjoyed reading about you and your family. Your family is beautiful!; February 10, 2010 at 2:28 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!