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Thank goodness I am a believer in day planners.

Posted Oct 02 2008 3:14pm

Georgia had her first visit with Dr. Capone at Kennedy Krieger today. (For those of you going, Dr. Capone will be at the Boston Convention in July.) We had to be there at 8:30 this morning, so you better believe it was a harried morning. Thank goodness for free valet parking! Traffic going into the city is a tad fuller at that hour and, being out of the commuting workforce, I really didn't allow for that. Ah well. We made it. A couple minutes late, but so it goes.

Georgia has some major stranger anxiety these days! Well...that's not entirely true. She has strangers-in -medical-environments anxiety! She really recognizes when we are at a doctor's office these days and she doesn't like people coming near her! Not even to measure her head! And forget about blood pressure!

I was relieved that she liked the PT (who we saw after Dr. Capone) and that she was being quite sweet with her. But that makes sense, considering all the new and exciting toys she had! We meet with the new EI folks this week, but I am going to consider seeing the PT at KKI as well if our insurance will cover it. She has all the climbing stuff and "tools" that make a therapy session feel complete. I mean, we have ways to make things work at home too, but I might like to have her seen there every three months or so as well. It's good to have more than one perspective.

Anyhow, Dr. Capone didn't really tell me TOO much we don't already know or at least have our eye on, but I wanted to develop a relationship with a developmentalist so that someone in the "DS know" is also keeping tabs on Georgia's progress. We love our pediatrician, but she is not a DS specialist. I think combined, we'll have great care.

Highlights of our visit included getting a referral to a local cardiologist (for regular follow-up which we are due for) and a referral to a local ENT. Georgia met with the audiologist last week and again got a sort of "pass/fail" result from her hearing test. Again there was a certain amount of fluid in her ears, but again she seemed to do well in the sound booth and poorly on the tympanogram (which essentially means her ear drums are not moving the way they should, likely the result of the fluid).

We're also meeting with the ENT because Georgia is still having some issues with stridor. The doctor could hear it today when she was inhaling. It looks like we are going to have to have a laryngoscopy (this does not sound fun--have any of you/your kids ever had one?) Depending on the findings of the ENT, we may ultimately end up with a GI specialist (at long last).

Other than that Dr. Capone felt that Georgia is doing really well. He said something along the lines of "You know, of course at this age we wish that there was a little more gross motor and language, but she's doing really well considering her diagnosis of DS and she's continually making progress." So that's good. He emphasized working on signs (which we do) and music (Music Together starts in a couple weeks).

We have homework from the PT as well. Georgia resists using her knees. Part of the reason she scoots instead of crawling is that she has adjusted her movements so she can AVOID her knees as much as possible. We are supposed to work at kneel play and moving forward on knees (although it is unlikely at this point that Georgia will crawl since she can scoot), pulling to stand, correcting the hip rotation as needed, standing with good alignment, and...hmmm...I'd have to go look at the notes to recall the rest. I'm sure it's not all that interesting for you anyhow. :)

So then...when we got home...we had a message from our pedi- who said the results from the allergy panel last week (we finally went on Friday...it was fairly awful) essentially showed NO ALLERGIES! So why all the boogers???? Apparently (and I don't want to say "I told you so" or anything), but it's a sinus infection! So. We're back to the antibiotics. A double course (to start out with!) I feel good about that decision. I think it's the right one and I am EAGER to get her nose degunked! I hope it works.

We're continuing with the allergy medicine and adding zinc to her normal daily vitamin (as per Dr. Capone's suggestion)...

Anyhow. I am jumping all over the place here, but ultimately...we got a few answers today, we opened up a few more cans of worms today, and well...ultimately, it feels good to at least make a little progress. Even if it means more moremore doctor appointments.

We'll get there. Wherever there is! Just add it to the list.

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