Monday, July 30, 2007

What a day...

(This is another picture that my talented sister-in-law Thomasina took. It is from last summer)


So, as if we didn't have enough to deal with in our wonderfully full lives! Caitlyn's seizures have increased to at least 2 a day, if not more. (prior to this, she was fully controlled by medication, with the exception of maybe 1 or 2 a month) She is also experiencing some random crying fits, during which she will bang her head on the floor, or hit herself in the side of the head. So, being the pro-active mother that I am, I called to make an appointment with her wonderful Neurologist. (no really, we like him a lot!) We were due to see him at the beginning of September anyway, but I hadn't scheduled the appointment yet. Would you believe my anger and surprise when I was informed that the SOONEST appointment they had was 10 weeks away on October 16th? I kept my cool, as I knew it wasn't this gals fault that the scheduling system sucked. She advised me to call the nurses hot line and find out what we should do for now while we await that appointment 10 WEEKS AWAY!!


So I did my duty and left my message. Now, let me just say that the nurses line at this *un-named* hospital has a reputation of not calling...I have only called once, and I don't think they ever called me back. Since I am such a nice and understanding person (most of the time) I feel the need to give them a chance. Their recording said due to high volume, it may take 48 hours to hear from someone. So let's see...That would mean I should hear from someone by Wednesday evening. They have my work number, and my home number. In the event that we don't hear something that is an acceptable plan, we will begin to look for a new doctor. I will not wait 10 weeks, while my daughter becomes increasingly irritable and uncomfortable! I will update every so they can follow our adventure!


On a more positive note, we are planning some fun for the summer! On Sunday, August 5th Caitlyn will be 4 yrs old! We are going to go as a family to the Olympic Game Farm for the day. It should be fun, and I think Caitlyn will really enjoy it! I can't believe my baby is going to be 4!!! The following weekend, Caitlyn, my mom, and I are going to drive down to Seaside, OR for the annual NWRett Syndrome Conference. I have to be back at work on Wednesday, so we will go down Sunday and come home Tuesday late afternoon. It should be fun! I plan on coming back with a lot of pictures, as this will be Caitlyn's first trip to the ocean!

I will write again later this week when we find out what the plan is...Thanks for reading!

2 comments:

Brooklyn said...

I COMPLETELY understand your scheduling frustration - probably ALL Rett moms do, even though I am "new" to all of this! I hope you get some answers soon!I ADORE the picture in your post. I have always thought Caitlyn was beautiful but this picture is fantastic! Thanks for posting it to share with us! Keep us up to date if you get anywhere with the doctors! The blog looks great by the way!

Brooklyn said...

HAPPY BIRTHDAY Caitlyn! I wanted you to know I was thinking about you today!