Celebrating Inchstones: Waiting on videos

Tuesday, December 20, 2011

Waiting on videos

I've been thinking I would take videos for this post but so far that hasn't happened. I've got to make it a priority though because I don't want to miss these milestones. Asa is doing some great gross motor work lately!

A few days after he started aqua therapy my dad gave him an adult walker and Asa took off with no one holding him!

Last week I put a set of Walking Wings on him and he took off with no one touching him! In case the link doesn't work... its a vest (?) with straps that come up at the shoulders so parents hold the straps while the baby walks without holding hands. This is the first time Asa would walk without holding onto someone. We've had the Walking Wings for a long time but Asa just would not let go of the hands! He'd have a complete panic attack. Now he just toddlers along. He really looks like a puppet. His muscles and joints are loose and he is uncoordinated so he is wobblely as everything but he is not afraid to try! That's a huge step! Now just to get video!

Asa is also cruising along furniture without holding onto our hands. Again, this is new and he is being very brave!

He is also holding one of my hands and using the other to cruise along. Last night he held my hand and cruised along the kitchen using the cabinet handles. This required him to take a few shuffles between handles while only holding one hand! So amazing!

I'm so glad we started the aqua therapy when we did because Asa is having a great surge in gross motor skills and having the extra therapy can only help.

He is also getting quite good at getting off the furniture we put him on. He gets out of bed by himself, off the couch, off the recliner, etc. This has mixed blessings but it is all very welcome!

He is not eating solids still but has increased the Elecare. So much so that he is almost out and a new shipment can't be delivered until next week! I called the GI and they should have sent new orders to the HHC so we can bridge the gap. I just didn't realize how quickly an extra cup here and there would add up. Hopefully they'll deliver some extra tomorrow!

He is also sleeping weird! He is staying up late or waking up early, like 4am early. This morning he was so funny even at 4! He woke up and I went in to lay down with him. He just kept "talking" and making funny hand gestures. His talking is grunts, sighs and hums but it is adorable. He was definately telling me some stories! I wanted to eat him up....for 15 minutes and then I just wanted him to go back to sleep!

I'll add videos to my "to do list" tomorrow!

1 comment:

The Martin Family said...: That is awesome to see him taking such great gross motor strides. It helps give some peace of mind that therapy really does work and that he's capable of moving forward. What an amazing time for him! Congrats to all. Merry Christmas, Lori Martin; December 21, 2011 at 8:49 AM

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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!