Friday, October 29, 2010

Ready for Halloween and Therapy Updates

We had a busy week.  It was full of appointments, the pumpkin patch and school parties.  Monday, Dylan went back to the Pediatrician for a follow up weight check and some lab work.  Last month (about 6 wks ago) Dylan was sick for about a week and had lost about 9oz. taking him down to about 15lbs.  For a typical child this would be no big deal but for him it was a big loss, and I was mostly upset because it takes him a long time to gain it back.  So Monday he weighed in at 15lbs 9oz and measured 30" long - he grew an inch in 6 weeks!  The doc was very happy and I of course thought that he would of gained more because he is now eating so much but a gain is a gain and I should be happy.  They also drew labs to see how he is doing on the calcium supplements and to see if they are still needed - I am still waiting to hear the results.

Then Tuesday we finally had our appointment with California Children's Services.  I have been waiting 2 months for this (since we moved).  Mostly it was just a lot of paperwork and questions.  I should get a call next week to have him scheduled for his evaluation with the PT and OT to get a new plan of therapy started.

Wednesday, we had Dylan's new service coordinator come out to the house from the L.A. Regional Center.  She was wonderful and I feel very fortunate that she will be handling Dylan's case.  She is increasing his home therapy from the previous 5 hrs/month to 10 hrs/month and not only will he have his early childhood developmental therapist but also a at home PT/OT and possibly a speech therapist.  The speech therapist may not start right away but she is working on it.  This was all very exciting news!

Then today we had our first visit from Dylan's new developmental therapist.  She was also great and she has actually worked with another child with WHS.  She is the first therapist that I have meet that has seen and knows about the syndrome.  She just loved Dylan and I am very excited to see what she has in store for him. 

We also had a little fun this week - we went to the pumpkin patch  - the kids had a great time.

My little cuddle bug.

Dylan's Tubmobile arrived today - another great therapy toy.  Thanks to Jessica, a fellow blogger, who suggested it.  Dylan really liked it and Hailey had a great time pushing him all around the house.

Then tonight, Hailey's school was having their annual Halloween Festival so we had to go of course.  I do have to say that they were the hit of the night with their adorable costumes - The Rainbow and the Little Pot Of Gold!

In the last week or so Dylan has actually been trying to bear weight on his legs and longer than just a few seconds.  He can stand with his leg braces but they keep his knees locked so he really isn't standing on his own by any means.  We are so happy for this new skill.  Up until now he really hasn't shown any interest in wanting to straighten his legs so I am pretty excited!  Keep up all the work big man!!!  I have to say that the stove top is NOT on, I laughed at Mitch after I took the video and though that maybe he could find a better place for standing work. :)


  1. Nice standing, way to go Dylan!!! Your costume idea is absolutely adorable!

  2. Beautiful pictures, and this post is so inspiring to me. For some reason, this Halloween season has been hard for me; I had pictured so clearly when I was pregnant that Ryan would be trick-or-treating, and Kaylee would be starting to toddler after him. He so wants her to be a part of his holiday fun, and I cannot help but have felt some sadness in realizing how far from reality that vision was...and is. Seeing Dylan and Hailey and their genuine bond with one another shows me that although Ryan's relationship with his sister will be different than the one I'd envisioned, it can still be a close and loving one. Great costume idea, too-- did you make those? They're awesome!! :-) Happy Halloween!!

  3. Love the pictures! I can't believe how tall Dylan is. He towers over Riley! I'm glad he is gaining weight once again. I think it is totally normal for kids to lose when they are sick, all kids do it. It can be frustrating, but he is back on track and will be back to 16 lbs before you know it. I am so glad he is starting therapy again and will be able to get more services now, that is always exciting. Love the halloween costumes, very creative!

  4. really hope everything will goes well in your life and really happy to hear about Dylan trying to stand... way to go Dylan!


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