More update on possible Seizures

Today we spent a good part of the afternoon in the ER at Children's Hospital in Seattle. Caitlyn got to be transported via ambulance after having multiple episodes that the doctor said were probably seizures. Caitlyn was a trooper at the hospital. Happy most of the time. She even got overly excited when the nurse was getting ready to draw her blood, and left a nice little bite mark on my hand. The doctors consulted with neurology, and neurology felt that since we already had an EEG scheduled for May 31st, we'd be ok to wait. They gave a script for a seizure medication, and off we went. They did say if she has any more seizures to come back. Caitlyn's smile is what helped me get through the day. Thanks to Kelli and Jaymes for hanging out at the hospital with us. Caitlyn is doing better now...Took her new medicine like a champ, and fell fast asleep. Keep us in your thoughts.

Update from our Neurology Visit

Last Friday we went in for Caitlyn's Neurology appointment. Her grandma and mom went with her. She was very well behaved, and we all enjoyed the new building down at children's hospital in Seattle. Her doctor was very excited with Caitlyn's large motor progress! He did feel that there was a concern with her eye rolling. On May 31st we will be heading up to Everett Providence Hospital to have an EEG. We should know a week or two after that what's going to happen next. Keep us in your thoughts while we investigate exactly what is going on. We will update after we know something, and I will try to take a picture so that everyone can see what Caitlyn thought of her helmet!

Caitlyn's new friend

Caitlyn got a new friend! This is Toby, an 8 week old schnoodle. (poodle schnouzer mix) Toby is a great little puppy. He follows Caitlyn around trying to play with her. She's not quite sure what to think of him. I help her to pet him, and she smiles. When she is done, she gently pushes Toby away. I hope they will grow to be great friends.

New Pictures of Caitlyn

I just wanted to post these pictures that Eric took of Caitlyn today. You can see from the blurriness around her hands how much they are constantly moving. I think they even frustrate her at times. At night, she actually sleeps on her hands so that she can relax. It pains me some days to see how much they move. I wonder if it drives her crazy.

Hydro-Therapy and other Therapy news

Caitlyn got to start hydro-therapy back up this week! She has this amazing love of water! At home, she will go into the bathroom and hit the inside of the tub, telling us she wants to play in the water. So we got her back into hydro-therapy at her school. Thursday was her first day. Grandma got to take her, and she had a blast! She will alternate between hydro-therapy and regular physical therapy every other week. Her therapist is excited with her progress!

Caitlyn is also making great progress in speech therapy! Her therapist feels that she is making the choice of what she really wants about 60-70% of the time. She does this by pushing a button with a picture on a communication device. The device gives her two choices. She loves to push the button with the picture of the goldfish crack on it. Food is such an incentive for our little girl! I will try and get some pictures, if they'll let me.

Possible Seizures?

When Caitlyn was diagnosed with Rett Syndrome, we were given the news that she could develop seizures at some point. Our chances were 75-85% that she would develop them at some time. Well, she has been having these episodes of rolling her eyes into the back of her head. We decided it wasn't something we wanted to sit around waiting to see if it went away. So, on May 5th we'll head to the neurologist to see if it is anything. Please think of us as we make this journey to yet another appointment.

Mastering the Stairs!

Caitlyn's therapists have worked so hard with her on going up stairs. They started with simply layering mats for her to walk up. Well, she can do it! This week at daycare she discovered the four stairs up to their loft. There is a railing, and she went up all by herself! I am so proud of my baby girl!!! To go down, she had the choice of a ramp or the stairs again. She gripped the railing with both hands, and went down the stairs sideways!!! Each and every new thing that she does makes us celebrate. The littlest sign of furthering development gives us all hope that she will continue to do more things. Another thing that she has mastered is standing up in the middle of the room! When Caitlyn figured this one out, she would drop to her knees over and over again just so she could stand up in the middle of the room. We are so excited that we can share our joy with everyone!

Chicken Pox?!?!?!

On Sunday night we took Caitlyn to the ER because she was having a lot of trouble breathing. The doctors said it was nothing, and sent us on our way. On Monday, we received a call that she had been exposed to the Chicken Pox while we were there. So, Caitlyn is stuck home for this week and next until we know if she ends up with them. (Aside from going to Grandma's house.) I will post next week to let everyone know what the outcome of her exposure what.

*Edited to say Caitlyn luckly didn't end up getting the Chicken Pox.

Update

Caitlyn is growing so fast. She is doing well, although we are dealing with it a bad a cough. We're are hoping it will go away soon. All of her doctors appointments have gone well. Her genetics doctors said her spine looks great!!! (scoliosis can be a side effect of Rett Syndrome.) It is hard to tell where our journey will take us. Caitlyn is shocking everyone as she continues to learn to do stuff. Just this week she started standing up in the middle of the room on a regular basis. Eric said he has seen her do it once or twice, but it is much more regular!!! It is so exciting! We never thought she would be able to!
Right now Caitlyn's all time favorite things are books, (though we have had to switch to more soft fabric books because she has taken to eating the cardboard ones) and her stuffed doggy that is named "Oggie Doggy." Once and a while she actually says oggy!!!! We are so proud of everything she is doing!!!!

Hi!

On January 27, 2006 Caitlyn was diagnosed with Rett Syndrome. I thought I'd start this blog so that her friends and family could follow her progress and development. Her latest thing is she is saying "daddy"!!! We are so excited to hear it. We know that the words may not stick around, and are so pleased to hear what we do! We will continue to post so that everyone can know how Caitlyn is doing.