We are also embarking on a new plan for AnnaKate's eating. I have been saying for months that we are having some issues. I could not figure out if they were regular 2 year old feeding issues or issues related to RTS. AnnaKate is our only child so I don't have any idea what a 2 year old should be like. I think we are seeing a combination of RTS textural issues, 2 year old stubborn issues and a just plain picky eater. We have a great speech therapist (I am not just saying that because she reads this blog...she really is great!) who is going to help us develop a plan. I also ordered Cheri's food chaining book. I am really excited about learning more about this and think that it is so cool that she is Alex's therapist. So if anyone has any suggestions, please send them my way. I am up for trying anything..almost!!
Thursday, July 17, 2008
Doctors, Doctors, Doctors...Oh My!
This week has been filled with doctors visits. AnnaKate got her 3rd set of tubes on Tuesday and did great. I always worry about anesthesia due to the concerns with RTS and anesthesia. Hopefully these tubes will last a year. Today we went to the opthamologist. This kind of had me a little nervous. We went last summer and mostly got a clean bill of health...a little tosis (droopy eye lid) and nystagmis. I was prepared for some other issues to pop up due to RTS but actually everything had improved and we don't have to go back for a year!! Yippee! On Sunday night AnnaKate will go for a sleep study. Hopefully this will give us some data to work with to make a decision about removing her tonsils. If she is not having any sleep issues then we will feel comfortable waiting until she is older. I am still waiting to hear what the current protocol is regarding correcting AnnaKate's thumbs. Some say to fix them now others say to what until she stops growing. They are completely functional the way they are and a big surgery scares me! :)
We are also embarking on a new plan for AnnaKate's eating. I have been saying for months that we are having some issues. I could not figure out if they were regular 2 year old feeding issues or issues related to RTS. AnnaKate is our only child so I don't have any idea what a 2 year old should be like. I think we are seeing a combination of RTS textural issues, 2 year old stubborn issues and a just plain picky eater. We have a great speech therapist (I am not just saying that because she reads this blog...she really is great!) who is going to help us develop a plan. I also ordered Cheri's food chaining book. I am really excited about learning more about this and think that it is so cool that she is Alex's therapist. So if anyone has any suggestions, please send them my way. I am up for trying anything..almost!!
We are also embarking on a new plan for AnnaKate's eating. I have been saying for months that we are having some issues. I could not figure out if they were regular 2 year old feeding issues or issues related to RTS. AnnaKate is our only child so I don't have any idea what a 2 year old should be like. I think we are seeing a combination of RTS textural issues, 2 year old stubborn issues and a just plain picky eater. We have a great speech therapist (I am not just saying that because she reads this blog...she really is great!) who is going to help us develop a plan. I also ordered Cheri's food chaining book. I am really excited about learning more about this and think that it is so cool that she is Alex's therapist. So if anyone has any suggestions, please send them my way. I am up for trying anything..almost!!
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Billy and I married in 1998 after dating for 6 years. In 2006 we adopted AnnaKate. We were lucky enough to meet her birth mother and take her home from the hospital. At about 4 months old, AnnaKate was diagnosed with Rubinstein-Taybi Syndrome. Through all of AnnaKate's struggles and delays she surprises and delights us daily! Thanks for marking this spot and coming back often to check in on us.
5 comments:
Cheri is wonderful, and we are so blessed to have her in our lives.
We go to see ortho on Monday, and will discuss Alex's thumbs. I too, have no idea what to do, He is starting to use them quite well, and Im done with big surgerys. However, if my thumbs were angulated when I was born, I know that I would want them to be fixed.
Such a decision!!!!!
That's great you'll have a plan. I always feel better when there's a plan, so I know what the goals are.
Natalie wants to see more pictures of AnnaKate!
So glad the tubes went great! Hopefully that will be her last set! :)
Just give her cheetahs and chocolate covered sunflower seeds!
Just give her cheetahs and chocolate covered sunflower seeds!
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