Tuesday, September 15, 2009


Today we had a full day at the hospital for regular check-ups. A pain to be up at the hospital, but glad to get it all done at one time.

When we got to The Children's Hospital Dental Clinic, I checked Max in, and told the front desk attendant that we would be waiting outside, because Max couldn't be around anyone sick. She took us back immediately to a conference room to wait...now THAT'S how we like it!

Max was seen by the dentist quickly, and she cleaned and checked his teeth. Still no cavities ((holler!!))...and just a bit of calcium deposits on his bottom front teeth, which is common in children who are g-tube fed. She said we can watch for his teeth to loosen, and once they do, they will pull them for us. Max was ready to be done though...as he hardly lets me brush his teeth every day...let alone the dentist picking away at his teeth to clean them!

After the dentist appointment, we had lunch with Max's neurologist. This was a friend lunch...not a doctor visit...but they always seem to mesh. We mostly talked about pictures (he's an amazing photographer), but got to also talk over Max's MRI and PET Scan results, and medication changes. His MRI looked great, with no evidence of damage from the medication he's on. And the PET Scan did not show any seizure activity in the area of his brain that they did surgery on. So they can say now they had a complete resection. In other words, got all the seizure focus the first time around! The only thing it did show was an increase of metabolic concentration in the temporal lobe. (Not too stunning since he has a metabolic disease.)

Our last visit was in the Special Care Clinic with Max's pediatrician. We had a mask on Max while we waited, because the waiting area was FULL! Thank God we weren't near any sickies! We have our little hide-outs while we wait, and no one was around us. When we got back to the intake room it was reeking of sani-wipes! Our nurse said..."I just wiped this place down from bottom to top for you, we don't need him getting sick!". So nice to be known...and to know that Max is so cared for by everyone there. When Max was seen 3 weeks ago at the same clinic for his sleep issues. At that time he was 45 pounds. Today Max is 50 POUNDS!!!!! In 3 weeks he's gained 5 pounds! And grown 1.5 inches! So that's a total of 50 pounds and 47.5 inches tall.

Our first item on the list was to re-calculate his caloric intake. He's chunking up...but doesn't need to gain any more weight for now. That's right...our little guy has turned the page from always too skinny to too tubby! Who would have ever thought?! They decreased his calories by 15%. We want to maintain his weight, so if he loses any, we have to readjust.

We also talked about his sleeping...and are going to start a new medication Clonidine that is safer to try. (The other one suggested a few weeks ago had too many side-effects for Max.) She was going to call it in to our pharmacy for us to start tonight...but it has to be made into a liquid to go through his g-tube so we'll start in a few days, once we get it.

And lastly, we talked of the dreaded H1N1, or Swine Flu. She also got a note from Max's allergist/immunologist that Max was NOT to get the flu vaccine. (In case we tried to go through her! HA! Like we're that sneaky!) But she also stressed how important it is to keep Max out of big crowds, and away from anyone who is sick or has the flu. Then gave us a prescription for Tamiflu, to fill if any of us gets sick to give to him. There are some kids they are giving it to UNTIL they can be vaccinated, as preemptive measure. But that is not needed for Max, so we'll just keep it on hand in case we do need it.

She said Children's would not be getting the H1N1 vaccine until the end of October to the beginning of November. But it is possible that other clinics (like Walgreens or grocery stores) will have it sooner for us to get. Until we get it, we just have to stay away from the germs as much as we can. She did mention the flu they are seeing (about 5 cases a week in their clinic alone) varies in it's strength from case to case.

Overall, Max had a great check-in with nearly every one. He only has one other check-up with metabolic in November. Beyond that, we are hoping to stay far far away from the hospital through the cold and flu season!!!

Tomorrow, Max will be meeting his new occupational therapist. I do hope they "click"...and she is able to stick around! Then Thursday, the happy day, Max gets his new stander!!! I'll post about it once we get it!!!


2awesomekidz said...

Just checkin in, haven't been here in a while. WOW Max is getting big. Praying for a healthy winter!

Deana said...

Thanks for the comment Tami. And THANK YOU for the prayers for a healthy winter...it's already getting to me being stuck in the house! Can you link me to your blog?

Anonymous said...

I look forward to seeing pics of him in his stander. I just did 2 posts on standers.