Monday, May 24, 2010

Our new GI

Asa, Moma and I traveled to Vandy today to meet our new GI. Our old one left and while I really liked him and he had such confidence in me, he was reluctant to test and explore our options. Dr. A has already made several changes and I'm excited and hopeful that they will help. I heard for so long that we should just expect him to have issues with reflux, puking, constipation because of the low tone but doing nothing and just accepting it is hard! When do you give up the fight...NEVER!

Anyway, Asa made the trip fine! He was really very funny. He "mmmmmm"ed most of the way up and back! When we came thought thunderstorms and had to turn the wipers on full blast he really cracked up! He tried to eat his toes! He has never done this before! I had a hard time driving cause I wanted to watch him in the rearview mirror!!

So he now weights 29lbs. He has been at this weight for a while and it is 50% on the growth chart so he is nice and solid on the chart! This is the first time he has been this high!! The GI even suggested we hold back on the Pedisure a little!! So glad to hear those words!!! And I have tried this a few times but since he isn't eating orally, it is hard to be sure he is hydrated and blood sugars are good.

But she had a plan for the oral eating and puking too! Barry and I have thought for a long time that Asa's tummy doesn't empty properly. We've never really been able to get anyone to listen to our opinion though. Dr. A is putting Asa on Reglan. Hopefully this will help things flow better and Asa will want to eat more by mouth! Then we will use the tube less!! Music to my ears!!! It will be hard to see him not gain weight or consume as many calories! I think I've been reprogrammed to aim for calories over quantity and now I'll have to readjust! I'm soooo ready though!

The Reglan kinda makes me nervous because it can have some neurological side effects and since we already have neurological issues, it makes me nervous! In fact we avoided it until now. It was suggested before, by another Dr, and I didn't want to try it! Now I'm ready. I think Asa is bigger and we will be able to tell if it is working or if it causes side effects. Before he was just a jumble of issues. Now we seem to have the line untangled a little! Of course, we are praying we see NO side effects!

Asa is only 33in. That doesn't even hit the chart and he has been that way for a while. The first times he measured short, I thought it might be an error. But this has become the norm! Now Barry and I aren't tall, just average so we didn't expect a giant but I have become programmed to be alert to anything that isn't the "norm"!! Dr. A wasn't concerned so I'll just roll with that too!

We will follow up with a nurse practitioner in the clinic in Jackson in a few months. The GIs don't come anymore we really don't have huge needs so we can see them in this clinic and avoid the 5 hour drive!

Ok, now that the GI appt is over I can start planning the Houston appt. I have lost all ability to multitask and can barely accomplish one task at a time! Barry says it is old age! :)


Geetha Srinivasan said...

Glad to know that you are comfortable with the new doctor. And that makes a big difference.

Good luck and God bless.

Debbie said...

Such a fine line trying to balance the puking, the poops or lack of, the are doing a great job, and I find him to be quite amazing with everything he is able to do!
Glad the GI apt went well!

And YES, I will blog from Nevada...I need all of you too! (wink)

All the Marletts said...

Hi kim,

I have been following your blog off and on since "meeting" you on the P2P site a while ago. Our daughter Lucy and your son Asa share many similarities. Lucy too has mito, complex I and III to be more technical. Her GI system is very affected and she is 100% g-tube fed 22 hr/day as well as a handful of cheerios given to her one at a time when we eat dinner. Her little tummy doesn't empty well at all (that's saying it nicely:), and her lower intestinal motility is even slower. Her GI doctor has really run out of answers for our girl, he lumps her in his category of "those metabolic kids". Recently we have a new doctor on our team who has given us hope and is willing to discuss options, motility meds being one of them.

I could go on and on...
I just wanted to "formally" introduce myself to you. So many things you write about are similar to what we are experiencing. By the way we have four kiddos too, Lucy being our youngest.

Feel free to check us out at

Kim and Asa said...

So nice to "meet" you too! I love your blog! I love the picture of her with the walker! I wish Asa would figure out he can hold onto that thing so he could move on!! He gets scared to hold it!!

And what is it about these 4th babies?!