Thursday, June 14, 2012

New Info

School has finally wound down for our two oldest girls, but we are still working with Rae on learning to read.  Rae's English is doing great, but now we are ready (at least we are) to move on to reading.  She does enjoy us occasionally us reading to her, but we ready to unlock the door and open her up to the world of reading. To our knowledge she did not go to school in China.  She told us that they did not teach her to read because of her eyes.  We are trying to tell her and reassure her that she can read and learn.  Her life in China seemed to revolve around playing on the computer ALOT, and cleaning and/or working.  She begged me to let her mop, but I just wanted her to be a kid and play.  We have put her on a hiatus from the computer and playing on our phones.  She is learning to play, and we are working on her playing imaginatively and some alone play.

Rae's health is doing well.  She has had no seizures, but her platelet counts still fluctuate. We were hoping to get 8 weeks of good numbers with IVIG, but to no avail.  We did get a month, so we have had another treatment. We do hope this treatment will continue to work, but if is does not, she will likely have her spleen removed.  We just wait and see with every CBC test.

We had our follow-up visit with her neurologist.  We really like Dr. Jones and had a really good talk with her for over an HOUR.  She gave us the name of what is the underlying cause of her seizure - Mesial Temporal Sclerosis. Normally, you would have more seizures with this and would likely lead to having that part of your brain removed.  We are not sure if this is in our future, but it is something we are now aware of if her seizures increase.  This is also the likely cause of her strabismus.  She will be having surgery in July to have this corrected, and also to have her nose cauterized to cut down on her nosebleeds. 

Our summer will hopefully be a little low key.  Hannah and Emily will be going to their respective church camps as well as tennis camp.  I have started taking tennis lessons so I can "catch-up to their level" as my hubby said.  We also hope to get in a great deal  of pool time, and to get Rae in some swimming lessons.  We are hoping we will be able to go to the beach at the end of the summer. 

backyard water slide

beautiful butterfly

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