Celebrating Inchstones: A Special Trip

Saturday, July 2, 2011

A Special Trip

"LOVE"

When Asa was born, 3 3/4 years ago, I found myself in a situation I'd never been in before. The doctors first used the word "hypotonia" and having no idea what it meant I came home and searched the Internet. It means floppy muscle tone if you don't want to google yourself. I'd never used the Internet very much. Mostly shopping and some coupon sites. Once I started opening the websites that had anything to do with "hypotonia" an amazing thing happened. I began to "meet" and share and love families who have kiddos who have floppy tone too. I learned so much about how to get my little guy to sit in carseats, strollers, grocery cart from people who have been there and done that. And that was just the beginning! There was constipation advice....it takes muscles to move that stuff out! I learned chewing and biting advice. I learned tips to catch the drool. There is so much to learn. It didn't stop there. There are developmental delays, feeding tubes, oral aversions, sensory disorders, speech delay and non-verbal. I've "meet" some awesome people!!!

And then there was the mito diagnosis. I learned that from my online buddies too. It wasn't one of the 5 specialist we were seeing who mentioned mito. It was my online friends! Boy, were they smart! And I've fallen in love with so many little kiddos that I've never met in person. Little guys that I've celebrated for, lifted in prayer and grieved for. Seems crazy to have such a relationship with a computer and pictures, doesn't it. But it doesn't to me!

I've met a few of these families in person over the years. A few in Houston on our doctor trips and a few are local to Nashville so I've met them at the mito meetings there. And this weekend I got to met another great family!

If you remember a few weeks ago I requested prayer for a little guy, Zach Moody. His body had gotten so tired of fighting mito and infections and after a week on hospice care he passed from the arms of his family to the arms of Jesus. Shortly after that his mom, Jen, asked if we'd like his wheelchair for Asa. Can you imagine a more giving and loving heart?!

We are trialing a chair for Asa and had just measured and gotten an order together for the very chair we were using. I called the DME and asked him to stop the order. Now you may wonder why we'd want a used wheel chair that was 6 hours away instead of letting insurance pay for a new one. Well, I'll tell you! First of all you are blessed to not know this info! Secondly, insurance will only pay for a chair every 3-5 years. Asa's Kimba stroller is considered a wheelchair. We got it about 2 1/2 years ago. We were pushing our limits even asking for anther one and there's a chance they'd turn us down anyway. Also I really think a power chair will be in Asa's future. "Future" because right now if he has power he thinks its a hoot to run over stuff! If you count it out he probably won't be eligible for a power chair until he is closer to 9 or 10. Now maybe he will have the strength and stamina to push a manual, or even better WALKING, but I'm being realistic here! Sooooo, by not accessing Asa's insurance for another chair we will be able to get him a power chair sooner! Can you imagine him with complete access!

So back to the Moody's! We said "yes", we'd be honored to have it. And 6 hours away is a nice road trip away. We planned on taking all the kids and having a little adventure but as I priced adventures, I quickly realized that it's pricey to entertain 6 folks!! Then Anna suggested she watch Asa and they could spend the night with my mom! I know....generous offer for a teenager but I'm sure it was partly because she wants babysitting money for new school clothes! Anyway, my mom had already offered so after some thought I accepted! A road trip alone with my hubby!!! Just me and Barry!! For 2 days! In a car for 6 hours each day. Wait a minute.... Just kidding!!

So Barry and I headed out and after 6 hours driving (and tons of traffic!), we meet Jen and Adam for supper before we headed to our hotel. When I first mentioned this trip to Barry he said "won't it be weird to meet someone from the internet". But I felt like I already "knew" Jen in a way. And I was correct! They were just as kind and easy to talk to as I'd thought they'd be. We all got along great and I truly enjoyed the meal. Well, maybe not so much the meal because I was so busy talking that I didn't even realize that I wasn't eating! Time just flew by. After we finished eating, we went to the parking lot and they got out Zach's chair. It looked like the perfect size for Asa and is a great chair. Even more special is that it came from a thoughtful family who wants to keep their son's memory alive and bless others like they've been blessed. I'm so honored to be part of it!

When we got home today and I put Asa in it for pictures he was so funny. We'd say "do you love your new chair" and he signed "love". He can push it on the carpet a little too. It is great support and Asa's been just sitting in it for a long time tonight. We are so thankful! Today would have been Zach's 4th B-Day so in celebration of Zack here's a few pics:

"Hmmmmm"

Thank you, Jen and Adam!!

And on a side note.... Barry and I are so old and married that we took full advantage of the 2 double beds in the hotel! We each slept in our own bed! I'm so not kidding! Best sleep ever, I didn't even roller over all night! Barry woke up and said "we really need a new mattress because I've never slept so good". I think it's because we had our own beds! hehehehe

2 comments:

Erin T. said...: What a wonderful thing for Zach's family to do! I can probably pull Travis or Jason leg to adjusted the wheelchair if you need it. Have a great summer!; July 2, 2011 at 9:29 PM
Kim and Asa said...: Erin, I felt bad about them not getting a sale but they'll be better off if we do power earlier! And I wouldn't protest if we tried for a walker now! hahahaha

Oh, and it has a chest harness too. Let's see him unbuckle that!; July 2, 2011 at 10:18 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!