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.

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. 

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!

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.

More Milestones

This is a quick post because I have to get back to baking.  Just wanted to share a few exciting things that Dylan has accomplished this week: First -  He can sit in the bathtub without his bath seat!  I was always to nervous to have him sitting in the tub without it because I was afraid that he would slip fall over and hurt himself but he has proven that he can do it!  He was so proud of himself and had a great time with his brother and sister splashing around.

Second - He is now feeding himself something other than cheese!  He is trying to bring everything to his mouth and is doing so great with taking a bite and chewing hard and crunchy food. 


Third - He is standing so much stronger and for longer periods of time.  He is also able to take about four steps with me just giving him some balance and support around his hips. 

We made a trip to the Christmas tree farm this afternoon and got some cute pictures and ended with a visit to Santa. 

Is it really almost Christmas?

Is December really half way gone?  Christmas is around the corner, AHHHHH!  I am not ready yet.  I feel as though I haven't even had time to soak in all the Christmas spirit.  When you are a kid it seems like December is the longest month of the year but as an adult it goes by way to fast.  I have been so busy working and going here and there with the kids, and everything else that I have volunteered myself for that I've barely had a chance to sing Jingle Bells.   

Here is my runny nosed little Dylan ready to spread some holiday cheer with his smile that will light up a room:

Even with a cold he is still happy.

Oh, and we still don't have our gait trainer, this one is the loaner.  Don't even get me started on it or I am bound to write some bad words.  However, I was told that it was on the way - maybe for Christmas? What a great gift it would be.

Here is my little speed demon Luke.  He can run like no one's business in the walker, so watch your toes and shins.   He of course was way to busy trying to run after Hailey to look at the camera.

Huckleberry was happy to spread some Christmas cheer in our house too.

Dylan did get his SureSteps though.  He picked out ones with skateboarders on them.   He's all about being cool with his skater shoes.

Bring on the Holidays

I started decorating this weekend, Hailey told me I better hurry up so that Santa wouldn't forget our house, so we lugged out all the boxes from the shed and put up the lights outside.  It made her very happy to see our house looking so festive.  While I was going through our huge box of Christmas lights Luke thought it was great fun to play with them, and I couldn't pass up a moment like this...

This one is my favorite.  Me being the total amature photographer, I thought this one turned out pretty darn good.   And because Luke and I were having so much fun Dylan and Hailey had to get in on the action.

Dylan has a new trick to show off - he can pull himself up to stand from the stool.  He is doing this all on his own, I am just holding his hands for balance!  This video was shot by big sis Hailey.