Celebrating Inchstones: Surprises!

Wednesday, March 30, 2011

Surprises!

Some days are just full of surprises! Around here that isn't usually a good thing! Surprises are usually stinky, smelly, sticky and all around yucky!

Some days though surprises are good and fun! Today was full of those surprises!

Asa woke up happy this morning. With my help he rolled over and slid out of bed, landing on his feet. He stayed standing and his upper body laying on the bed for a while and then he straightened up and stood just leaning against the bed. He seemed so strong!

After a diaper change, it was breakfast time. Sometimes a cup of Pedisure is too much to handle but this morning when I asked if he wanted some yogurt instead, he got all squeally and happy. Asa was so happy and talking and having the best time so I decided he should try to self feed the yogurt. He took 2 bites in between the bites I was giving him and I decided to get this happy morning on video! It isn't too often we get happy, chatty, eating mornings!

At noon Asa went to school and I commented about how "talkative" he was this morning and too bad it wasn't speech day!! His speech therapist did step in and we chatted. She said he did some great receptive language stuff yesterday.

I was not gonna bother with this detail but I will because some of you moms might have non talkers and need this tip. You know those pics from the PECS boards? Well Asa's teacher has some that are laminated and on popsicle sticks. Things like happy, sad, home, school, etc. Now Asa loves flags and sticks so this was right up his alley! After teaching him not to grab at all of them, it seems that he was pretty good at making the selection she was asking for. We use flash cards at home but he does seem to get bored with that so this idea is pretty fun and easy for us to make at home!

Anyway, when I picked Asa up at 2:30 I noticed the DME truck in the parking lot. When I got to the classroom, Asa was sitting with his teacher and the cutest, tiniest wheelchair was beside them!!! Asa had not been in it yet so I was so excited! Asa actually pulled out of the teachers lap and while holding my hands he walked all the way around the chair and back to his teacher. It was like he was checking it out!

Once the DME got the seatbelt on, we put Asa in and he took off!!! I was so happy and only thought to take out my camera when Asa's teacher commented that she didn't have her camera!!! I'm so glad I did get his first moments on video. I'm also bad about taking still pics when video would be better. And sadly I only use my cell phone to capture precious memories! But, I did get the video!!!

Asa was so excited! He pushed right away....I missed that part on the camera! And he made 2 big turns by himself to push over to the door. I can't imagine what he could do with open spaces!

Once we got home he pushed around the kitchen some but the carpet was kind hard and he was pretty tired. Gracie started pushing him around and he loved it!! The more he laughed the faster she went! Not dangerous, of course, but faster than he could do himself. We pretended that he knocked me down and he thought that was hilarious! Then he tried to roll over me!! I guess we shouldn't teach him to drive like that but he was having so much fun. We'll get to the rules of the road later!!

And just to be clear, this chair isn't ours. It is a loaner for us to trial, to be sure he can use it, likes it and we want to order it. I have to say that I think he likes it. We'll have to use it for a week or so to be sure it will be useful for him. I love it. It weights around 15 lbs, I'm guessing. It fits in the back of my van without breaking it down at all. It is growable. I'm not sure of the weight and height limits but Gracie sat in it and looked good. Cade looked pretty big in it! So if Asa can and will use it I'm ready to order! We may issues with the insurance. Asa got a Kimba adaptive stroller in May 2009. That's only 2 years ago. But at the time Asa was barely sitting up. It had to be pretty supportive. I can't believe that he can now sit up, scoot, walk with support and now push a wheelchair. I just pray the insurance will see how great his development is and how he needs to be cognitively and socially challenged by having his independence! If they don't then I may have a kidney for sale! Ha, just kidding but I did hear you get some decent money for plasma! ;-)

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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!