Saturday, January 21, 2012

Advice anyone?

As Dylan gets closer to his 3rd birthday I am getting a little nervous.  Dylan currently receives 30 hours a week of in home therapy services through Regional Center, and all of these services are provided at no cost to us.  In two weeks I will be attending his IEP meeting for school.  After Dylan's birthday on Feb. 20th he will no longer receive therapy through the Regional Center it will all be turned over to the school district.   The therapy provided by the school district is not like the kind he has now, it is much less or so I have been told.  I know that I have blogged about this before but now that the reality is setting in that my baby will be turning three next month I am kind of scared.  To be perfectly honest I am afraid to send him to school.  What if he cries?  What if they don't know what he needs or wants?  What if another child hurts him?  He is still such a baby and I am just not sure what to do, not sure what the right thing for Dylan is.   The problem with not sending him to school after he turns three is that then he would no longer receive services.  The school district only provides the therapy at the schools.  I have checked into outside therapy services that we would have to pay for mostly out of pocket because of course the best therapy center is outside of our insurance network therefore we would have to meet the higher deductible, blah, blah, blah...  You know how it goes.  I am taking a tour of two local schools with special needs preschool programs in early February so I am sure once I see a classroom and the children that he would be with it will help me make my decision.  I guess part of me wishes that he could go to the same preschool that Hailey went to two days a week and that it would all work out fine.  But maybe I am being unrealistic. 

If anyone out there has any words of wisdom for me it would be greatly appreciated. 

My handsome man showing of his new haircut thanks to Auntie Kerri.
 Kissy face
 Dylan's new trick is standing against the wall.  We still need to work on helping him figure out how to get back down.
 Pretty girl
 Cutie pie
Dyl listening to sister's princess music and loving it might I add.

Sunday, January 15, 2012

Shocked and Saddened

     As I sit down to write this post I am still at a loss for words.  On January 10,2012 (just a few short days ago) a beautiful little girl named Amelia, who, like Dylan has WHS, was denied a life saving kidney transplant because (using the doctor's words) she is "mentally retarded."  I don't want to try to summarize her mother's account of that day, so if you would like to read her posting click HERE
     Being a RN and in the medical field for the past 12 years I have never heard of someone being denied a transplant because of their mental capacity.  Honestly, it never even crossed my mind that it would be a consideration.  How can a doctor be the one who decides who can live and who can die?  If this was happening to Dylan I know that I wouldn't go down without a fight.  Amelia's parents are fighting for her too and I hope and pray that the doctor and the hospital will change their mind and give her a chance at life.  If you would like to support Amelia please follow this link and sign the petition. 

Saturday, January 7, 2012

Want to see what brought me to tears today...

That's right, our little motocross champ can stand in his walker all by himself!  This is a skill that we have been working on for the last year.  I am so proud of our little "pickle."  This is just the beginning of what 2012 has to hold for Dylan.  Look out everyone, SUPERDYLAN is on his way!

Monday, January 2, 2012

A New Year

I am embarking on this year with a new found outlook and perspective. I will be counting my blessings and not my problems. I will find joy and happiness in each and every day.  I will smile more and cry less. 

That's about as deep as I am going to get on this post - I'm to tired with long hours at work, not enough sleep and lots of laundry today I can't get my brain on the blogging track so some cute pictures will have to do.   We all had a wonderful Christmas and New Years.  It was kind of fast and furious but good.  I still can't believe it's all over.

This was Dylan's happy face when he saw his Buzz Lightyear from Santa. 
My little Santa's Helper wants to walk so bad - he is close, any day now.

My little loves.
Hailey is showing Dylan his new puzzle.