Celebrating Inchstones

Sunday, February 7, 2010

Super Bowl!!

Barry loves football. No, he LOVES football! In another life, before kids, he watched nearly every. single. game of the season. Now he doesn't get to watch that many. There were a few Sunday's here that football wasn't even on the TV this season, only a few though. I forced Barry to wear this shirt and glasses! I say the dorkier the better! It takes the right attitude to really enjoy a party!!!

I like football. Sort of. I like the highlights. I like the final score. I like the replays. But mostly I'm good if I follow our team....the Titans. That is enough for me!

So this year for the Super Bowl we got invited to a Super Bowl party. Well, party might be an overstatement. It was just us and the hosts. But don't worry we had plenty of food!!! And a huge TV....in HD!!! Really, Barry was in hog heaven. And I had a pretty awesome time too!

We partied it up with a family who has kids the same age some of ours. They've also been around the block with a SN child. They've been doing all of this for a lot longer than us! I feel like I learned so much and it wasn't about football! I hope I was not too noisy and asking too many questions. I don't think I was but I like to talk....a lot!!!

The kids had a great time too. The youngest was chasing Gracie around the table asking for one hug!! I tried to tell her sometimes it is best to just give a little hug....they'll stop asking!!! She didn't listen. Maybe she liked being chased! They decided that Gracie could go back on Sat. and Cade on Sunday! I think we can say they both had a good time!!!

Oh and the Saints won the game! First time they've been to the Super Bowl and then they win!!! WOW!!! They've had a rough road! I'm glad they get to celebrate!!!

Saturday, February 6, 2010

This is a Mickey button G-tube. The balloon part is inside Asa's belly and the other part is where we plug in extensions for a feeding. I'm posting this pic for a reason. The balloon normally holds 5ccs of water to keep the button in place. Too little water and the tube will pull out of Asa's stomach. Too much water and the balloon will pop. This is Asa's old tube. I put it in a monkey of Asa's and have used it to show people how to plug and unplug Asa.

Today Cade thought it'd be fun to see how much water the balloon will hold! He used a 5cc syringe and filled it in 5cc increments. Amazingly he filled it 15 times!! That is 75ccs of water before it popped!!!! I don't have pics of how big a "normal" balloon looks because this one exploded and the only other one we have happens to be in Asa's belly at the moment!!!

Before all of the balloon excitement, we went to Gracie's basketball game! This is our first experience with basketball and I love it! It is so much faster than the t-ball and baseball. Gracie is pretty athletic and competitive! She is one of 3 girls on the team but she gives the boys a run for their money!! She was rebounding like crazy today! That makes her DeeDee happy.....she was know for throwing her elbows around in highschool basketball!

And tonight we went to Memphis to meet with our mito group. There are only 4 families but lots of other support was there. There will be a big 5K in Millington on March 27th. It should be great and sounds impressive. I think it deserves a post of it's own, maybe tomorrow.

So how was your Saturday?!?!!

Friday, February 5, 2010

SURPRISE!!

SURPRISE!!! I have another blog!! Did you think I was announcing something else?! Can someone pick my mom up off the floor?! I thought Caring Bridge would be all I needed but it has become a headache. It is so much easier to add pics on here. And I can even load video, but dial up won't let me! That will be changing in the future too, I hope!!

I've been double posting for about a week. The blogs are really cut and pasted so if you are up to date on the CB then you are up to date here! There might be some pics though, if you want to browse them. I hope everyone likes this blog too. If CB is easy for you to get to then please let me know. I don't know why I couldn't keep coping and pasting the posts. My plan is to eventually stop the CB and only use Blogger. So if you want the CB, speak up, please!

Asa will be back on motility meds tomorrow!!! He has been so gaggy and pukey the last few days! We've had to drain and vent him at least once a day. He has gone to bed without his night time cup for the last 3 nights. I hope the med proves to be our "fix". I hope we see the improvement we saw when we first started it. Or this could be just a down turn for a while. Maybe we'll know more tomorrow. The pharmacist said we should notice changes quickly, both good and bad changes.

Speaking of the pharmacist....Anna was with me when we picked up the meds tonight. The pharmacy staff is always glad to see us and we chit chat....alot! We discussed some other meds and issues. I never even had to tell them our name or what we were there for, they just know. I'm grateful for this relationship! As we were leaving though, Anna said "Is it weird that they are, like, your best friend"! I guess we are there alot. I call even more often. I'm grateful that we have them though!

And talking about Anna.....she turned 13 a few weeks ago. I can't believe it! You might expect attitude and moodiness from a 13 year old girl. I know I was dreading it! But I think she has gotten sweeter, if that is even possible! She tells me she loves me at least 5 times a day. If she does snip at us, she quickly apologizes. She gives hugs away freely, even gave me one in Target this afternoon! She is a big help with Asa, even if she won't touch the feeding tube or poopy diapers! And she is soooo funny! She really cracks me up! She is such a blessing and we probably overlook that most of the time. Now, she may flip personalities tomorrow but I know that deep down, she'll always be this precious!

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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!