Celebrating Inchstones: Busy week!

Sunday, October 10, 2010

Busy week!

We have had a busy week and I've had no way to blog! Talk about withdrawls!! And now my computer is full and won't let me add new pics! The horror! Something to deal with later, I'll just update now and pics later.......hopefully!

On Tuesday my mom and I took the kids to Nashville.......all by ourselves! The kids weren't sure we could do it alone!!?! We made it and had a great time! We usually go for a long weekend in the summer but the resort got flooded in the May flood. So we planned for fall break and it was perfect. The weather was just right!

On Wednesday we went ice skating. In January there was a mito meeting and we were gonna go ice skating after the meeting to celebrate Anna's birthday. Well, there was a snow storm that weekend and we didn't get to go. One busy weekend led to another and we haven't been. Sooooo, now they could go ice skating! Cade wore out pretty quickly, he got huge blisters. Gracie made Anna fall hard and Anna was pretty much done. Gracie fell a million times but she said "I did good. I only fell like 5 or 6 times"!! I was great!! I even learned to turn and go backwards while still skating! I know, I know!!! Hold your applause though! Gracie and I were going to go around 1 last time before we left and that is when I fell!!! OUCH!!! My palms, knee and hip are still sore and bruised!!! On and I got a nice blister on my heel that bothered me so much I couldn't wear my tennis shoes to the mall or the zoo! Oh, well, we had a blast and the kids got their fill!!

After ice skating we went to Jake's House, the Life is Good shop. I didn't know we had one nearby!! I got me a shirt and Asa a new one. There is something about having that positive reminder on the real tough days!

On Thursday we hit the mall!!! We always go to Opry Mills but it was flooded and hasn't reopened! So we headed south to Franklin. We shopped till we dropped and then we shopped some more! I'm not sure that we bought too much though. I got Asa some cute shirts, which I have pics of but can't load! Cade has saved his yard mowing money all summer and we itching to spend it! He actually said, "this money is burning a hole in my pocket, hurry up!". Now were would he have heard that!!! He spent his money and was happy!

On Friday we went to the zoo. Now I should have planned better and not gone to the zoo on a Friday! It wasn't bad but I'm sure it'd been less crowded on Wednesday or Thursday. Two very loud and excited monkeys greeted us as we entered but the rest of the animals were asleep!!! Gracie got mad cause we wouldn't buy her Dippin Dots, even though the stand was clearly not open! Cade's feet hurt and with the animals asleep it was kinda boring. Although the zoo was so amazing, but clearly not exciting enough for them! We were set to leave but then Cade and Gracie went on the playground! That alone was worth the money!!! It was so fun even Anna and I joined in!!! Asa got jealous and went in for a little while. Mostly with me holding him and him pointing to where he wanted to go! That lasted way too long if you ask my shoulder!

After the zoo we went back to the resort and the kids swam! Sure there is an indoor pool but what fun would that be?!! They got in the outdoor pool for several minutes and I got knee deep into the kiddie pool with Asa. The kiddie pool was nice but the big pool was cool. We headed inside where Asa and Gracie played some more. Those 2 even came back to the room and got into the jacuzzi tub in the room!!

This had to have been the most relaxed vacation for me ever! We had no set in stone activities. Our rooms were big enough for 8 people and we only had 6 in them. We all had our own room and our own space. The kids watched enough Disney to last them until next year and Anna had her own "apartment". My mom did all the cooking for us! I'm telling you it was the best!!! I'm spoiled now!!

Asa's birthday was on Thursday. We really didn't celebrate with anything special. We did have a little party today though. I say little cause can you imagine Asa in a room full of people with balloons, streamers, hats, noise makers?! Ha!! I almost bought a pinata for the big kids but thought he might freak out at the hitting and excitement. He had a good time today though.

I've stuggled to get him a birthday cake he might actually try. The first year it was cupcakes. Last year it was a cake I made. This year it was mini lemon icebox pies! And he ate it!!!! I have cute pics but you know.....

3 comments:

gg said...: Sounds like the right kind of vacation. You know, the kind where you don't have to come home to rest!!!
Glad you guys had fun and Asa ate his birthday "cake"!!!; October 11, 2010 at 3:34 PM
Alison said...: That sounds like a wonderful little getaway! I would have had fun too!; October 11, 2010 at 6:10 PM
Anonymous said...: I had fun just reading your post, lol. Wish Asa a belated Happy Birthday for me ;o); October 14, 2010 at 1:27 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!