Tuesday, March 6, 2012

Sometimes you just need a good cry!


****Post written on January 31, 2012 that was never posted! Opps!****

I wanted to update this bloggy thing and anyone who reads it, about Weston's color changing feet.  All of the tests have come back normal.  The doc thinks it could be Raynaud's disease.  It doesn't appear that he has any rheumatic disease which rules out Raynaud's Syndrome.  I guess it's not much to worry about.  There is no cure.  There is no treatment.  Just keep the poor kid bundled up!  He's been doing fairly well.  He is sleeping better at night, most nights!


The pending big birthday of Rylee's has been keeping up busy!  When a child who receives Birth to 3 services turns 3, they age out of the program.  Rylee is significantly delayed in a many areas and is definitely in need of continued therapy.  So we had to turn to school.  She went to all of the testing for OT, PT, speech and early childhood.  Most of them overlapped.  It seemed that for 3 weeks straight we were running her to school or someone was coming to our house to visit her or us.  On January 25th, we had a meeting with the school and a ton of others to discuss the results of all the testing and makes some decisions of what to do next.  So my dad and Kris' mom came with to support me (Kristopher had to work and couldn't come) along with Tammy, our Birth to 3 program coordinator, to meet with the school psychologist, school speech therapist, OT from Cesa, PT from Cesa, the Early Childhood coordinator and the Early Childhood speech.  It was a full table.  There was lots of facts thrown around.  I thought I was ready to hear what they had to say.  I know, and always have, that Rylee is "special".  She has severe delays and there is no denying that.  But I will never get used to hearing people that I had just meet 5 minutes earlier tell me how far behind she is.  It was rough.  I made it through.  And in the end, I ended up signing consent for Rylee to go to Early Childhood 4 days a week for 3 hours a day and 1 - 30 minute home visit per month.  The school is in Hazel Green so we have to transport her there and back.  I am honestly not very fond of the fact that she will be so far from either Kris or I.  But it was what had to be done.  I really liked the Early Childhood teacher and think it was what was best for Rylee because ultimately our goal for her is to live the best life we can give her. I held strong through the whole she's at the 1%, "very poor", "below average", definite need for services, 20 pages of goals without a single tear.  Once I got in my car to go and get the boys, I bawled.  I cried all the way to Platteville to the daycare.  I can't say that I felt better but sometimes you just need a good cry!


4 days after that meeting, Rylee turned 3!  She didn't really want to I don't think.  She didn't want presents or us to sing to her or a card that Grandma had sent.  She did however, want cake! And yesterday, our very new 3 year old went to her first day of school.  She had a few tears when the teacher asked her to stop playing to join in circle time but otherwise it went alright.  Today, she had a suspected seizure.  I am not convinced that it was or wasn't.  She hasn't had one in 8 months.  She was probably daydreaming or just spacing. We'll take it more seriously if it happens again.




Next month is a very busy one for us.

Feb 6 Uncle Scott's Birthday
Feb 7 Weston has his pre-op eye visits at UW Station clinic
Feb 9 Rylee has her 3 year well child visit and Weston has his 18 month well child visit
Feb 14 Rylee has a visit with AFCH Audiology and her ENT doc to follow up on her hearing issues
Feb 19 Troy and Rylee's birthday parties!
Feb 20 Weston has eye surgery at AFCH
Feb 23 Rylee has a GI visit, MRI and Neurosurgery visit at AFCH
Feb 24 Uncle Craig's birthday
Feb 25 Aunt Carmen's birthday
Feb 27 Rylee visits with Urology and Neurology at AFCH and UW


Lots and Lots of trips to Madison.  I can't say that I am looking forward to it, but we need some straight eyes and check ups to makes sure everything is functioning properly.  Sorry if I am absent for the entire month of February. 


I am working on reading 50 books in 2012.  I am currently on book #6 so since it is extremely quiet in my house, I am going to take advantage and read a little before Daddy gets home from work!  Good night all!



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