Celebrating Inchstones: Roller coaster ride

Wednesday, June 16, 2010

Roller coaster ride

Sometimes the lack of posts means all is well and we are busy. Sometimes it means all is not well and I am busy. Sometimes it means I'm in a grumpy mood and don't want to bring anyone else down into the pity party I create!

For the last few days the lack of posts has been because of the later 2 reasons!

Asa has been so clingy and needy that I'm not sure I could update if I wanted to. But I haven't wanted to sound as whiny and gripey as Asa, so I have avoided the blog too.

It seems we are out of the happy honeymoon of Reglan. I suppose it is still doing it's job but he isn't eating as well and he has had several sick episodes but without the puking so that is progress, I suppose. I was so loving getting Asa out of bed and him really wanting to eat! The last few days though, it has been lunch time when he decides to eat breakfast! And he isn't a happy hungry. I think hunger is part of the reason he is so ill! Have you seen the Snickers candy bar commercial with Aretha Franklin in the back of the car complaining about the AC and stuff. They hand her a Snickers and she reverts back into a college kid. The others comment how hunger always turns him into a diva. That is Asa when hungry...a diva!

Or maybe he doesn't feel well. The last 2 days I given in and gave him Motrin just in case something was hurting him. Cade is dealing with sinus headaches and I had one on Sat. So maybe there is some headache thing going on. Who knows.

It is hard seeing him regress or not progress like he was. For a while I can kid myself and start believing there is a misdiagnosis and he just has delays but is catching up. Then before the thought even gets out of my head, BAM, he is on a down slide again. And for no obvious reason. You'd expect him to be regressing if he was running a fever or had an ear infection or a cold. But so far no signs of anything.

So there you have it! The low down, ugly post!!

But I can't end there! Monday night was Gracie's last softball game. Gracie hit a home run in her last game! Barry stayed home with a crabby pants Asa and missed it. She has had a fun season, even though they only won a few games. Some games were close and some we wondered why we even showed up! But she had fun and learned a lot. I had a blast this season too! Gracie's team had some great team parents! After the last game a group went to eat and celebrate. Gracie and I joined them and it was the therapy I needed! I'll miss this team!

Oh and yesterday, Asa tried a smoothie! Asa got sick while Anna and I grocery shopped so we rushed through the end and left with time to spare before getting Cade and Gracie from summer school. Asa was zonked out in the car seat and we weren't getting him out in the heat again so went to Smoothie King and Anna used the Wi-Fi while I went in to get us a smoothie. I carried on quite a conversation about their Vitamix blenders!! Vitamix blenders are a tubers dream! They say you can blend a steak so smooth it'd go through a feeding tube! That is a cool blender!! Anyway, since we haven't used the tube but still can only do smoothie consistency, I was day dreaming about making Asa all these cool smoothies instead of Pedisure. Then I was struck at how weird it must be that I was getting all excited about making smoothies for my 2 1/2 year old. So I ordered something and left since even the smoothie was depressing! Asa was coming to but he had no desire for the smoothie. Later at home he did drink his and was very happy with it. You should have seen his face when something yummy came out of his straw cup! Seriously, wouldn't vanilla Pedisure get so old after this long!

Tomorrow we were gonna try some big kid food with Asa in therapy. I'm still hoping he wakes up tomorrow ready and willing to try new stuff. I might give him an extra dose of Reglan and see if that makes a difference. We are supposed to give it 3 times a day and only do it once. The GI warned that if the one dose worked we might have to move up to the 3 doses. We'll see how he does with breakfast!

So sorry this has been long and rambling and depressing. Pardon me while I get my thoughts out so I can move on!!

2 comments:

Meghan Clement said...: Kim,
Don't apologize for this kind of post. What better way to get things off your chest than complain to people who understand what you are going through? Trust me, Asa is not alone on his feeding issues. I would try the 2 doses of Reglan and see how that goes...hopefully in the right direction. Keep going momma, you're doing great!

Love,
Meghan; June 17, 2010 at 9:17 AM
Robin Brown said...: don't worry about it - that's why i love facebook and things like that - cathartic to just vent to whoever's there!! so blog on....; June 17, 2010 at 8:48 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!