Celebrating Inchstones: Playing catch up!

Wednesday, May 12, 2010

Playing catch up!

I can't believe I haven't posted since before Mother's Day! And to leave on such a downer post too! Well rest assured that my mood is so much better after a little blog therapy! Seriously, there is so much going on in this little brain of mine that once I get some of the negative thoughts out I feel so much better! I'm sure you all love having to endure the whining and pity parties I can throw! But you guys are always so great! I got several emails from some super moma's who said they are having the same feelings as me. And then several comments on here! Really, you guys are great!! You make a girl feel a lot less lonely and a little less crazy! :)

My Mother's Day was good. I'm not sure why Mother's Day is on Sunday, I think it should be Saturday. We get up early to go to church on Sunday so there goes the plan of sleeping late on Mother's Day. And this year Barry thought it'd be a good idea to join in the Homecoming festivities at church and have lunch there. Sounds great unless you consider that lunch has to be ready by 9:30am, when you leave for church. Bless him, he tried to make it a no stress day but that was a lot of pressure! Barry really did give me a great day though. I had a long nap in the afternoon and he did most of the Asa duty. Asa, on the other hand, got super sick before bed Sunday night and I was sad to see my day go out with him so pukey!! It really takes so much out of him to get sick.

The rest of this week has been busy with stuff. Not sure what exactly but I know I haven't gotten much accomplished and I'm tired so I must be doing something...somewhere. Monday I got some phone calls made. Tuesday was OT. Oh, Asa's OT gave me the name of a lady whose 7 month old was getting a G-tube. He got the mom's permission and my permission and then swapped our numbers. I called her today. The surgery is tomorrow! I hope I helped to calm her fears. She sounded like she was at the point we were at with Asa and just ready to get it over with so they could focus on other issues. Please pray for Lydia's family and doctors tomorrow.

This morning Asa got up at 4 am and then I had a terrible headache. I don't think my day started until after 11am today. Of course, then Asa's routine was off but I think we got it back on track. Hoping he sleeps better tonight. He has some booger of mosquito bites and they may have been bothering him. He doesn't scratch them but they are swollen and warm so they must hurt.

I do realize this must be one of the most boring post ever but I felt bad about leaving off the way I did on the last post! Maybe tomorrow will be more exciting and I'll have something fun to blog about tomorrow! HA!! Exciting and fun don't usually go hand in hand here!

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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!