Celebrating Inchstones: Naming a post is difficult!

Thursday, March 11, 2010

Naming a post is difficult!

This morning started off great GI wise. I tried some babyfood but Asa wasn't interested. He did take a bottle of Pedisure from a sippy cup though. We didn't use the pump until lunch. That is when things went south. I feed Asa after therapy on the way to the grocery store. The last 2 Thursdays he has gotten sick. I wonder if there is something to it or just a coincidence. I thought maybe the car seat is at a bad angle but he also gets pumped at 2:30 in the car. We do this feed at 12 instead of 11:30. Could that play a part? It is probably just random but it is odd.

So I had to go by the bank for the PTO and Asa was being drained into a Farrell bag to keep him from puking. I had 9 rolls of change. I begged them to take it at the drive thru window but they can't take change. I know it is a good rule but is there no room for exceptions? So I park, get Asa and his bag of stomach contents and the money and trek into the bank. And no I'm not hiding the bag of gross. I did consider putting it in the diaper bag and taking that in but that would be something else to try to keep on my arm. Holding a baggie was much easier. No one said anything and maybe they didn't notice but I was proud we made it in and back out without him puking on their pretty floors!! Would have served them right though! YUCK!

On the plus side for today.....Asa went up the stairs at PT! They have a little step and deck built for the kids to practice going up and down. Asa always walks to leave therapy while his PT uses a rolling stool to support him. He isn't bearing his weight but the steps are all him. Usually as he nears the end of the gym he makes a right turn, towards the exit door. Even if this is only a practice walk, he takes a right is ready to go. Today, however, he turned left! Directly towards the stairs and deck!!! And he didn't hesitate one second to go up those steps!!! He loved it up there! King of the hill! He didn't do so good going down. In fact, only once was it his idea to go down, he was perfectly happy to hang out up there all day! In all he went up 4 times and down on his own (his own decision) once! Who knew he could do stairs. And just the fact that he wanted to try something new is amazing. That is so not his personality!! I think he wore his PT out though!! :)

His speech therapist was back from maternity leave but he didn't give her a big welcome by eating. :( I was hoping he'd really show out! Instead he refused her pudding and puffs. Oh, well, there is always next week. We talked about his frustration level and his receptive language skills. She thinks he is ready to start using a communication device. At least look into one. Just a basic picture board or book to start with. I'm gonna take pictures of his favorite things and put them in a photo album for him to start with at home. I'm thinking the fridge (door open, of course), the dish washer, the ceiling light and phone are all good things to start with!! My silly boy!

Enough about that guy! Cade and Gracie both have their first ball practice tonight! I had a PTO meeting but I can't wait to hear all about it!!! I'm sure I'll be so sick of ball before it is over but it is so exciting right now!! Cade is moving up to kid pitch and Gracie to girl softball (coach pitch)! Lots of changes and adventures!

2 comments:

Christy said...: so much going on! I hear you about the bank...don't they KNOW how difficult things can be?!! lol

WTG Asa on the stairs! Woo hoo! Luke's PT has also talked about doing the same type of communication devices...wouldn't it be fun to sit our two boys down together sometime!!

Hugs to you!!; March 12, 2010 at 6:05 PM
Kim and Asa said...: When I have Asa by myself I don't go many places that don't have a drive thru. Unless I'm gonna stay a while.....Walmart, Target. It is the in and out that kills me!

And I'd LOVE to get Asa and Luke together! If for nothing else so I could spend some time with Luke's amazing Moma!! Ya'll aren't headed South anytime soon are you! LOL!; March 12, 2010 at 6:46 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!