Celebrating Inchstones: Fun weekend!

Monday, February 15, 2010

Fun weekend!

We have had the busiest and most fun weekend.

On Friday, after we picked the kids up from school, we all took some clothes to a consignment sale. Then we played with some ducks at a nearby pond. While we were in the car. Yes, we were in the car and played with ducks! We stopped so Asa could see them but when I opened the van door on his side, the ducks came running!! They though we had food. I really, really wish we had some.....they seemed hungry! We pulled on down to see some geese and the ducks followed us. We were all laughing so hard. Asa though they were funny too. Those ducks even turned around and started following us out of the parking lot. I'm not sure why we all went to the clothes drop off but we had the best time laughing about the ducks! It doesn't take much to entertain this family!!!

Saturday morning we had a children's activity at church. A missionary from Brazil came and spoke. It was so interesting. I can't imagine that kind of life. A life of travel and not being at home. Learning a new language and culture. I'm more of a home body! I'm not sure of my gift but I'm pretty sure God didn't plan on sending me to a foreign country. The kids made bird feeders to bring home and share with our feathered friends.

Saturday afternoon we went for pizza with some friends. We all sat and talked so long. With Asa we usually pick an off time to eat. The restaurants are less busy so it works better. Our family calls it Lupper.....lunch and supper! In the end, Cade and Gracie went to the movies with our new friends! They had so much fun! I'm hoping they behaved!

Sunday we celebrated Cade's birthday with family. He had 2 boys from school spend the night and they played and played!! Gracie hung right in there with them. It is pretty funny because she is only 2 years younger than the boys and we keep saying they may look at her differently when they are Seniors and she is a Sophomore!!

And then last night we got more snow!! I can't remember getting 3 good snows in a single winter, much less 3 in 3 or 4 weeks!!! Thankfully the boys brought there snow gear so they all played outside this morning and this afternoon! Oh, and Anna had a friend over last night! That means 7 kids here!!!

Asa handled all of the activity pretty well. He was really clingy last night. I couldn't put him down at all. He'd just cry and fuss and scoot around behind me! I put him to bed before 7pm knowing he'd probably get up early but it was worth it at that point! And of course the woke up at 5:30 this morning!

He wasn't as clingy this morning. In fact he was back down for a nap when the boys got up. Then this afternoon he scooted into the hallway for Cade, Anna and Gracie's rooms. He scooted to each door but didn't really go in a room. He played and played all by himself for soooo long. Even when we made eye contact, he'd just grin and go right back to playing!

This afternoon Gracie worked on a school project. She had to make a robot out of stuff she found around the house. One thing she used was toilet paper!!! Asa loves toilet paper! He scooted up to the robot and she'd move it. Then he scoot over to it again. Then he started pushing it around because his legs would push the base before he could get his hands on it!! It was so funny!!! I couldn't believe he was trying to "play" with her robot!!

3 comments:

Debbie said...: Sounds fun and busy!

I was just reading the history of your little guy and was wondering if you know the difference between mitochondria myopathy and and mitochondria cytopathy? Hudson has cytopathy...I guess I could google it....just curious.; February 15, 2010 at 8:31 PM
Kim and Asa said...: Debbie, cytopathy means "cell". They are all mitochondrial cyotpathy. Then some have more muscle involvement and it can be called myopathy, meaning muscle. Or if there is more brain involvement is can be called encephalopathy. At least that is how I understand it....I could be wrong.

I really love reading your blog!! I found it through Heidi, who has been an inspiration since Asa was first diagnosed as just hypotonic (floppy). You both amaze me!!!

Hugs to Hudson and all of you!!; February 15, 2010 at 8:38 PM
Debbie said...: Thanks for clearing that up...the crazy thing is that Hudson's muscles,brain are hugely impacted by this disease...I despise it all..no child should endure what these kiddos go through.
Asa looks great and healthy.

You are very kind...I actually met Heidi and Jack at Childrens...what a cutie pie Jack is!
It is really great having other mito mom's with the same Doc's...a great connection.

Thanks for reaching out to us and joining this blog world with us...the support and heart connections are a huge part of walking through this.

God has put some amazing people in our path through this journey...

Blessings and hugs-Deb; February 15, 2010 at 11:54 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!