Saturday, March 22, 2008

Another update

So it was brought to my attention that I didn't update about Caitlyn after Sunday (thanks Kelly.) Caitlyn is doing much better. She is sleeping quite a bit but that may be due to the recent increase of her Seizure meds. We are just feeling so relieved that she was able to beat this on her own. We took her to the ER on Sunday after several episodes of her lips turning blue when she coughed. They checked her over, and said everything seemed fine. We were prepared to treat yet another sinus infection, and the doctor gave us the prescription but advised us to wait a few days. She said if it was bacteria the fever would not break on its own. Well, the fever broke and she continues to get a little better every day. I do believe this is the first time she has had just a cold!

A very Happy Easter to everyone.

Sunday, March 16, 2008

update on Caitlyn

Last night she peaked a fever of 102. It comes down with Tylenol and Motrin. We are waiting to hear from the nurse to see if we need to have her seen today, or if it can wait until tomorrow. Please pray for her...We are really afraid we have pneumonia on our hands. I will update when I know more.

Saturday, March 15, 2008

My house is taken over by sickness...

My poor baby is sick yet again. Last year we had antibiotics for sinus infections in August, October and December. Then a week after going back to school in January, it all started again. This time we did 25 days of antibiotics. And here we are again. Only this time I'm wondering if it is more of a chest bronchitis thing. She has a terrible cough, and very little energy. She will play hard for 5-10 minutes and then come looking for mommy or daddy for comfort. Even since birth she has had a terrible gag reflex (just like mommy) so that when she gets into a big coughing fit, she throws up. It is so terrifying that I can't sleep. She will throw up in her sleep during a coughing fit, and just roll right through it not even waking up. I'm scared that she could choke on it. (I guess we are lucky she didn't have the energy to eat much for dinner...hopefully there is nothing to throw up) The poor thing just seems so weak. Luckily she will drink water, so we are keeping her hydrated. But you all know that Caitlyn can't really afford to lose the weight from not eating. Please pray that she gets her energy back and can fight this without having to do more antibiotics. I worry about the long term effects after soooo many cycles on them. I'm off to try and get a little rest. I hope we have a quiet night tonight.

Tuesday, March 11, 2008

A whole month

I can't believe it has been a whole month since I posted. I should really post more often. Let's see...

We went and saw the neurologist last week. He thinks that maybe our medication increases have been too conservative. We keep getting control only to lose it again. So, we have been raised up to 200mg of Zonegran once daily. Hopefully this increase will do the job. If we lose control again, we will have to add another medication into the mix. We have been soooo fortunate to have no side effects with the Zonegran. It makes adding another medication into the mix kind of scary. Hopefully we will do ok with this increase.

I am so excited to tell everyone that I am going to be able to go to the International Rett Syndrome Conference in May, in Chicago. I'm very excited. The waiting is hard, but will be well worth it, I'm sure. Then of course in August we will all be going to the North West Conference. This year we only have to drive to Federal Way (about 1 hour.) If you've been around awhile, you'll remember our very first NW Conference in Portland two years ago. The train ride home was not pleasant. Last year we went to Seaside, OR and my mom drove. This will be nice to just go to Federal Way.

We continue to make choices for Caitlyn regarding what will happen next year. We have decided to pay the higher rent where we are and not move. This means that Caitlyn will go to a school that has free full time kindergarten! We are excited for that, but must decide now if we want her sent across the district three days a week for an extended day class for kids with Autism Spectrum Disorders. She is in this class for preschool this year and we like it, but it is just the next room over. If we did it next year, she would be pulled out of her full day kindergarten class and bused across district for the ASD class. I know that we will probably have to deal with her being teased at some point, but I want to do what I can to limit the opportunity. We are leaning towards not doing the ASD class because having her taking out of her regular class for three whole afternoons would draw too much attention to her. She will be pulled out for therapy and we don't know how that will work. Her Physical Therapist said that she will have to be bused for PT. I will ask that if she is going to be bused any way, we want her doing Aquatic Therapy. We shall see how that goes over.

And the most exciting news we have is that we were approved for a grant to buy our stroller!!! To refresh your memory, this is the one we applied for. It might have helped that we know the family who started the foundation, but nonetheless, we are very thankful to be getting this stroller. I will post pictures as soon as we have it.