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. :)

Tuesday, October 26, 2010

Cute pics just because

Oh my beautiful girl!  And my very handsome men!

Dylan says, "I'm getting pretty used to this sitting thing."

Tuesday, October 19, 2010

Playin' with sissy

I think it is so cute that my kiddos love to play with each other.  Hailey loves her little brother so much and she wants to play with him all day.  She is a great little motivator for him too.  She is his biggest cheerleader when he is working on a new skill.  Recently she had a little homework assignment that asked "what makes you special?"  Her immediate response was, "I'm special because of Dylan, and because I am his sister."  She then drew the most precious picture of the two of them together holding hands.  I almost started crying, she definitely tugged at my heart strings.  She is so loving and caring, Dylan is so lucky to have her as his sister. 

Earlier today Hailey wanted to play with Dylan in her room.  So I brought him in and went back a few minutes later to check on them and I found him covered in about 5 blankets and holding a dolly and other little "beds" for her other dolls all around her room and her on the bed.  They were playing school and she was the teacher telling them all it was nap time.  Dylan of course was just smiling, talkin' and kicking in delight.

I had to add this pic because this is his new favorite play to chill when I am doing my hair and makeup - the bathroom sink.  Usually he will sit up in it but today he wanted to relax and nothing is more fun then tearing up a magazine.

I finally got a call from the Regional Center today and talked to Dylan's new service coordinator.  Thankfully they are going to start up his home therapy next week!  I am very excited to meet the new therapist and can't wait to get him back to work.

Wednesday, October 13, 2010

Pregnancy Update

I figured I would post a little prego update since it has been a while and maybe some of you are interested.  I am now 33 weeks along and besides the horrible heat in Southern California that is making me sweat, and the horrendous back pain at the end of the day I am doing well.  I had my appointment with the Perinatologist for my follow up ultrasound and besides waiting for over an hour everything went great.  The baby is growing right on track and everything appears perfectly normal and healthy.  He is measuring in the 40% on the growth chart and his estimated fetal weight is 4lbs7oz. 

He was being a little difficult when the tech was trying to get a picture of his face - he kept putting his hand and arm in the way but you can still see those cute lips, little nose and chubby cheeks.

I had to add this pic because it is so cute - our little Motocross Champ with Daddy and Uncle Eliot last weekend.

Thursday, October 7, 2010

Sitting Up!!!

I am so proud right now - Dylan can sit up now for a minute or longer, before he gets distracted and falls over!!! I can't believe it.  He is doing so great and feeling so strong.  Look out for more good things to come from SUPER DYLAN!

Wednesday, October 6, 2010

Not much to report, but I will say that I am still frustrated with Regional Center and California Children's Services because I have yet to hear back from them.  It has been well over a month and every time I call they tell me that his chart is still be reviewed.  It is hard for me to not get upset because it is not like he is a new case he is just a transfer.  Sadly all I can do is wait patiently.  I hate for him to be out of therapy for so long.  I work with him every day on his sitting, standing, and crawling, etc...  He is doing great with eating table food.  He now completely turns away from all pureed baby food.  I still have not tried hard/crunchy food yet because I still don't think that he is chewing all the time.  I notice that he still will mash the food with his tongue and do more of a sucking pattern about half of the time.  I am still so proud of this accomplishment with eating, I honestly wasn't sure if it was ever going to be a possibility.  He still will not reach out and grab the food off his tray, but if food is falling out of his mouth he will reach up and push it back in with the back of his hand.  For me this seems like a step in the right direction.  He will hold onto his cup if I put his hands on it first and help him move the cup to his mouth, he will do the same with a spoon.  Practice makes perfect right? 

Here are just some cute pictures to end this post.
Our little cuddle bug.

Dylan with his new bath seat.  He really liked it and had a lot of fun splashing around with Hailey.