Unfortunately (because this is an easier solution), the culprit behind Gracie's behavior is not her ears. It's also, thankfully, not the newest changes to her pacemaker. She has, for the million and umpteenth time, active gastritis that finally showed itself (in the form of old blood in her G-tube) on Monday night.
We went to the GI clinic yesterday and saw a nurse practitioner - - she was nice in the end - - but a bit adversarial with me at first. This could be due to my own attitude toward her when she finally walked in the exam room nearly an hour and thirty minutes after our scheduled appointment time. Anyway, she wasn't too receptive when I told her we were trying to establish care with someone other than our current doctor. I think she just thought I was a moody mom, but once I thoroughly answered her questions, she began to take Gracie's situation a bit more seriously than just "needing calories" and gave me a bit more credit as a part of her "medical" team. (I'd like to think I have an honorary nursing degree in the specialties of GI, pulmonology and cardiology... perhaps I really should go back to school!)
Overall, though, we got nowhere and she feels that it's quite possible we've exhausted every avenue regarding a solution. That's not encouraging... but I will remain (fairly) hopeful that, at some point, we can alleviate this nightmare for my sweet girl. I cannot and will not give up the hope that there is relief in her future.
Tomorrow is her IEP... it will be just for placement purposes only. Since she's been out of school so long now and without any services, we don't really have an basis for making new goals (or adjusting old ones). In thirty days we will have a review and create new goals. Then, at some point in the very early fall, we will do her triennial review that's actually due in two weeks. I readily agreed to the delays. None of her team knows her at all and she's basically lost the year with the exception of Mommy OT, PT and school (which is good... but also includes a crazy little boy who wants to interfere and learn, too!). So, tomorrow we will work out the logistics - - what days she'll attend (she's only gone two hours, two days a week at the most due to health and stamina), what hours, what services she'll have and discuss the assignment of her health aid.
Once we get past this point, I have to wrap my brain around the fact that I will be leaving her with virtual strangers for the first time in her life. For the moment, though, I am focusing on tomorrow. I can only take on so much at once!
Thursday, March 26, 2009
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6 comments:
u continually to inspire me. u are such a super mom. i only get tired reading about the doc's appt and it immediately stirs up so many emotions in me as half the battle is just getting people to listen!! u should go back to school because then u could be moriah's doctor, and we'd love to you pieces ;-)
thinking of you guys always.
love
victoria
Hi Kristi, Sorry you haven't really gotten the answers you want for Gracie, glad you made the dr. realize that you weren't being just a moody mom. You should go back to school (I like the term honorary nursing degree - I think all of us Charge mommies should have one of those in one way or another) I hope her IEP goes well and it will be very odd for her to be away at school at first but once you get use to it, it won't seem so bad and that crazy lil boy will get some one on one time with his mommy too :O)
Oh, Sweet Gracie!
K, I just am so sad to hear about the people in this GI doctor's office - I long for someone to walk into the exam room one day who passes the coffee test with flying colors and offers concrete, creative, think-outside-the-box ideas to help Gracie feel better. And of course, all that requires listening to you (an amazing mom whom I admire and learn so much from!).
I'm so looking forward to hearing about Gracie's IEP and placement...I have such great hopes for a wonderful program match for our Sweet Girl!
Sorry about the GI issues and good luck with the IEP!
My thoughts and prayers are with you as you decide all these hard issues for Ms. Gracie.
Hugs
Crystal and Eva
Kristi, how did the IEP meeting go? I'm anxious to hear. I'd be glad to share some of Katie's earlier IEP goals with you if it would be helpful, just to kind of give you a sense of the path we've been down and the progression to where we are now. When Katie started preschool at age 3, she had absolutely NONE of the skills she has now--no understanding of sign, extremely delayed fine and gross motor skills, etc. Her favorite activities when she started preschool were either lying on her back kicking her feet or looking at herself in a mirror. She has come SO far! And I credit is largely to an amazing educational team and also to a visit we made to Perkins in Boston for an evaluation when she was 4 1/2. I think a lot of the things they've worked on with Katie over the years could be beneficial to Gracie, especially since it seems like they are so similar in their communication and learning styles.
I hope you can get some answers on the GI issues. There has to be a doctor out there who won't just give up on finding answers!
You are one dedicated momma and you deserve a degree for all you know (who would of thought we would be learning like this, huh?). I didn't know Gracie had a pacemaker. Ben is evaluated yearly with a HOLTER to make sure his ticker isn't requiring one (he has SA Node Exit Block). But how frustering to not have any answers. Seems that happens more than getting answers (at least for us). Hang in there!!
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