Saturday, February 1, 2014

I year after diagnosis

Here we are a little over a year from our diagnosis - so glad to no longer be where we were a year ago - freaked out and at the beginning of our journey into the was all so scary then, and I'm so glad to be past all of the first year's terror!

Pumpkin is 22 lbs heavier now (almost gained 1/3 of her starting weight), she has no abdominal pains, she likes to eat (in her own unique way), she seems content and ornery as ever (maybe even moreso), and is coming into her own personality.  I would like to see her gain another 30 lbs, but I'm glad to be doing better than ever since she was a tiny kid!  She hasn't had seizures except when given meds that lower her seizure threshhold. 

She is seeing a counselor now, which is going well, for her anxiety about food and Crohn's related stuff.  She is also working on social anxiety regarding peer relationships.  Hopefully they can find a way to help her sleep like a normal person soon too.  She has a terrible time getting to sleep.
Next month we see the peds GI again.  I'm a little apprehensive, as she has been pushing for Pumpkin to get a G-tube.  The thought of this freaks Pumpkin out, and is her #1 fear, according to the psychologist.  The psychologist even went as far as to say as pushing Pumpkin to get the G-tube would be traumatic to her and probably life-altering in a very bad way.  The last time I spoke with the GI, she pretty much said that any weight loss was too much at this point and unacceptable, at that point she weighed 95 lbs, but since then she had a tonsillectomy, lost 8 lbs and has gained 2 back in the past month.  We've tried two different appetite enhancers which both set off her neuro system negatively after once dose (seizure and pre-seizure symptoms).  She has given up on Ensure and Peptamen Junior - so sick of them!  NG tube was a traumatic experience too.  Right now she is eating food and drinking Carnation Instant Breakfast for supplementation.  She has started a swimming program and doing other PE activities about 4 hours a week.  I'm thrilled to see her building her exercise tolerance to be able to do this, but it isn't helping her gain weight.

I'm to the point of pretty much telling the GI that a G-tube is off the table, and if she wants to help Pumpkin, she'll have to find another way.  I know her heart is right, but I can't use fear as a motivator for Pumpkin - she doesn't work that way - and unless Pumpkin takes a terrible turn for the worst and we don't have any other options, we're not even going to talk about it any longer.

Has anyone else faced this issue with their GI and told them that a G-tube wasn't an option when they were feeling pressured to go that direction?  If so, how did it go?

Lastly, I'm thinking strongly about enrolling Pumpkin in a charter school program we have in our public school system where she will be working with other kids, but working at her own pace on the things she needs to meet school standards.  I think it will be a good situation for her - I just hope the anxiety of doing something different won't set her too far back health-wise...

I guess that is my update.  Thanks for reading, if you made it this far!

Wednesday, January 1, 2014

New Year Status

Stained glass pumpkin by Pumpkin

With the lights off
Pumpkin has finally started eating again and having less pain after her tonsillectomy that was done on the 18th.  She couldn't get enough popsicles last evening while watching a movie together, but only ate half of her supper prior to the movie.  She said it didn't taste good.  This is a common complaint - I think it is part of the picture, but not sure what to make of it.  After eating she later had reflux symptoms and needed tums, which has happened a couple days in a row...  :(
I am glad for the increased appetite, but was hoping for much more after 2 weeks of rest...  she's down to 89 lbs :(  but has only lost 3 since the tonsillectomy as she was 92.6 on the day of the tonsillectomy.  She still has a little throat pain.


After (hers are the two on bottom!)
 Interestingly, the ENT yesterday said that of the 3 kids' pathologies on their tonsils, Pumpkin's tonsils were the only that showed ongoing chronic infection...  she was not symptomatic and I was wondering whether to even go through with the tonsillectomy at the time, but now glad I did.  She had that squirrely problem creep up too many times this year!

Ice fishing with dad before the tonsillectomy