Celebrating Inchstones: New adventures

Tuesday, July 27, 2010

New adventures

I've found a new and exciting blog that I've been following, Babies with iPads!!! It is just what it says, babies who use an iPad!! I had already loaded a few apps on my iPhone that were helpful for Asa but this lady has so many more ideas!!! I now have a whole page of apps just for Asa my iPhone! I got some ABA apps for free in April during autism awareness. Then I got 2 apps that make loud noises while we were in Vandy for the EEG. I tried to use them to get a startle but Asa just laughed! Now I have 2 AAC apps, Tap To Talk and MyTalk Lite. I adapted the MyTalk a little with our pics but both were free and I haven't decided if I want to pay for one and adapt it to Asa's needs. I also got (for free!) the Peek a Boo Barn and he is good at it! I may pay for the full version. Look Baby is fun but it is probably to babyish for most kids. Then I have 2 coloring and light apps, Spawn Lite and Glow Coloring. Anna taught me that if you like a pic on the screen you can take a picture of it! Fascinating!!! The app I'm most unsure about is one with pics of animals and when he touches the animal, it makes a noise. Asa isn't too crazy about animals so he really doesn't like this one at all. I'm hoping he'll grow into it though.

And I'm sure that was all completely boring and random unless you have a little one you are trying to entertain while you are on the go!

And for some fun news...Asa went on a slip and slide tonight! Some of the youth from church rolled out some wide black plastic on a hill beside the church. They used a water hose to turn it into a slip and slide! It was so much fun. Add some baby shampoo and some pool floats and you have yourself a water park ready attraction. Ok, maybe not that good but it was fun! As they finished up I took Cade and Gracie over cause I knew they'd love it and they did!! I decided to let Asa ride while I sat on a floaty. He laughed and kicked and splashed in the water at the bottom! This was the first time Asa has ever even been down a slide. Can you believe that! I don't know why I never tried it before. We may have a new adventure tomorrow on the swingset, unless it is hot and humid again!

Oh and it is popsicle week at the therapy center so Cade and Asa both left with a green popsicle! Asa could barely wait to get to the car and get a bib on. It did keep him cool since the car was so hot though! Now, how can I keep popsicles frozen in the car while we do all our other errands?!

Oh and I started Christmas shopping today! Yay!! I several things checked off my list. I had Cade with me so I was limited on what I could get for my own kids!! I've taken the first step though so I feel better! Last year I waited much too long to start and was panicking when I hadn't finished by Dec. 1st. I have no plans to wait that long this year!!

2 comments:

Debbie said...: catching up and looking at all the EEG pics...super cute, seemingly very happy little guy considering the misery I hear when H is hooked up. What a trooper!

He looks like he is doing really well...and did I read he is not having any seizures???What wonderful news...God Bless him!; July 28, 2010 at 2:11 AM
Emma said...: Thanks for linking to this blog. Very interesting.; July 28, 2010 at 2:10 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!