Wednesday, February 13, 2013

Rett Syndrome Clinic 2013

We left on Thursday afternoon and flew to California to go to the Rett Syndrome Clinic. This clinic has about 8 specialists who know all about Rett Syndrome. We have been looking forward to this visit for a VERY long time. Oaklynn did SO good on the plane she was all giggles and smiles and had a great time. To be quite honest, she was all smiles from the second she saw her sister drive away with her Nana and realized that she got to be alone with mom and dad . . . hahaha.

We got in later that night, so we just went to the hotel and went to bed. 

The next morning we went to breakfast and then to the Rett Syndrome Clinic. We were there from 10:30 - 4:30. We sit in a room all day and all the doctors/therapists are in that one office. There were 3 other families there the same day and it was literally just us 4 families and the staff in the office that day. The doctors and therapists switch between rooms and come in and out. There is literally no schedule or method to their madness... but it totally works (lol)!! They had a sign on each persons door that had the child's initials and the people who she would be seeing that day. That was how they kept track of who that girl had seen.

These were the people we saw and what we got from them

NEUROLOGY - Dr. Birnbaum
We didn't have much to talk to him about. Oaklynn had a normal EEG (normal for Rett Syndrome). He is mainly there to help discuss seizures with parents as well as medication to help control them. Since Oaklynn isn't having seizures yet, we didn't see much of him (and we were quite happy about that, YAY).
One of the sweetest ladies we have ever met. She was WONDERFUL with Oaklynn. We were very pleased with her and all the knowledge she had about Rett Syndrome. She just taught us more about their apraxia and things that Oaklynn may come across as she gets older. Overall she was pleased with the things Oaklynn could do.
EKG - Sarah
She had a great EKG. Nothing to worry about as of right now!
We were able to talk to her about what Oaklynn takes by mouth every day. We made sure that we were meeting her calorie requirements (which we are). Since she doesn't eat dairy, we also made sure that she was getting all the vitamins needed in other areas. Those vitamins that she wasn't getting, we are now supplementing by giving her that vitamin through her tube. We made sure we are doing a good amount of fluid through her button and that we could stay off the formula that we were supposed to be giving her (I hate giving her that stuff. I would rather pump her full of just straight vitamins then give her that, just to make sure she is getting the correct vitamins)

Didn't talk to her about much. We didn't have many questions as Oaklynn lost most of her hand use. Oaklynn communicates with her eyes and mainly uses her hands to pull her hair. She still has some use of her left hand to do some things. She is also doing SO GOOD at eating by mouth, so we didn't really have any questions for her.

We then took a break for lunch 
(and some Mickey Mouse of course)
PHYSIATRY - Dr. Elaine Pico
She looked at Oaklynn's overall posture and motor ability. I brought x-rays for her to look at and she said she wanted them repeated in 6 months at the latest. She feels like Oaklynn is starting to get scoliosis. She said it isn't severe and nothing to worry about yet, but it is something that we should take precautionary measures to try and prevent.
We talked to her about how we communicate with Oaklynn. She tried different devices to see what Oaklynn responded to the best. She first started by using buttons that Oaklynn would push. She realized that it didn't work well for Oaklynn because of her apraxia and sensory seeking. Oaklynn always wants to feel and touch things so she just kept hitting the button over and over again. So she then tried to put the button by her cheek so that Oaklynn would need to turn her head to talk. In the picture below, Oaklynn was turning her head to say, "more please". She would turn her head and her cheek would hit the button and the button would speak for her. She did fairly well with this technique but not the best. I then told Judy that we felt that the eye gaze machine would be best for Oaklynn. I told her how Oaklynn makes GREAT eye contact and speaks with her eyes. We set up the machine and tried it out.

It's a big screen (about 12 inches) that has a "camera" on it. You set it up by having the camera locate her eyes. It then tracks her eyes and speaks what she is looking at. The screen shows you what she is looking at but it does not choose the option until she looks at it for 1 second, which is a long time for a girl with Rett Syndrome (you can change the amount of time if needed). She did VERY good with the eye gaze device. We were all impressed with how fast she caught on. The session was recorded so she will be sending me the recording in the next week or two. Once I have it, I will put it on the blog for you all to see. We are in the process right now of trying to get an eye gaze machine. They are VERY expensive so it wont be approved by insurance unless THEY feel it would benefit Oaklynn. Keep your fingers crossed.

Oaklynn was screaming and was EXHAUSTED by this point. She would calm down if I sang her specific songs, but for the most part she lost it. We didn't get much time with her since Oaklynn hadn't had a nap and was so tired. Music is Oaklynn's favorite so I wish we could have had more time, but Oaklynn did SO GOOD the whole day that I couldn't expect much from her.
Her son was sick that day so she called in that morning and wasn't able to be there.

Overall we are so incredibly happy with the visit and the things we learned. Most of all, Oaklynn had SUCH a good time. She was so happy the whole time. Loved meeting new faces (mostly because they were talking TO her and she felt comfortable with them) and hanging out with Mom and Dad all alone. We will get a detailed report in the mail from the visit which will be good to refresh our minds of what was said.

We went out to lunch one day and next to us was a lady (probably in her 60's) sitting down eating by herself. She was done eating and was reading her book when we got our food. About half way through our meal, she leaned over and put her hand on my shoulder and said, "It was an honor eating lunch next to you guys today. Your daughter is so well behaved and I just felt honored to eat with you all." We thanked her and educated her about Rett Syndrome and gave her a "purple card" about Oakynn. It was so sweet that this lady went out of her way to let us know that she felt honored to sit by us. It brought tears to our eyes and we were so grateful to be Oaklynn's parents.

We did a few other things real quick before we had to head home and Oaklynn enjoyed all of them. Here are some pictures of our trip . . .


We are so excited to go next year. I know that there are many things that we forgot to ask as it was all new to us and things were forgotten. We are SO GRATEFUL for the donations from others that helped up get there and learn more about Rett Syndrome and Oaklynn. Thank you all so much!!


Colleen said...

It was nice to meet you and I'm glad you got to get out in the sunshine and enjoy some of the sights here. Beautiful pictures of you guys!

charity said...

sounds like you had a wonderful appointment. thats cool that you spend one whole day there and go to each appointment. btw oaklynn is so cute

Islam said...

Greetings from our sweet angel to yours : ' My amazing sister, i love you , you are a great gift to your mom and dad and they love you to the bits '