Tuesday, August 30, 2011


We are blessed.  I have said it before and I will say it again - I have wonderful, caring, loving friends/blogger moms.  We share a common bond in that our children have been diagnosed with WHS.  We chat on-line, facebook and follow each other's blogs.  Most of these friends I have never met in person but I feel like we have known each other for years.  They have all been so supportive and comforting to me because they know what it's like to travel this special journey. 

Yesterday UPS knocked on our door and had a very large box with Dylan's name on it.   Inside was a reverse walker and a set of very small, but perfectly sized Suresteps!  These were a gift from Dylan's sweet friend Norrah.  Norrah had grown out of the Suresteps and no longer needed the walker, because she is walking on her own, and she wanted Dylan to have them.  I feel so very blessed and fortunate to have Norrah and her family in our life.  Thank you so much from the bottom of my heart.  I hope one day to be able to meet all of these friends in person but for now email and blogging will have to do.

Dylan can definitely rock the pink swirls!  The Surestep orthotics are something that I have been fighting to get approved through CCS and have had very little success.  They feel that because they already approved his DAFOs (which are also orthotics that wrap around his foot and go all the way up to just under his knee - (that he hates, mind you and cries whenever he has them on) they don't need to approve anything else right now.  My position on it is that is, well... lets just say I do not agree. 

Trying to see what this is all about.  He did really great standing and holding on.  The reverse walker will be Dylan's next step after he masters the gait trainer (which we should have in about four weeks).  He still needs more pelvic stability and strength but I am stoked that we have one now and don't have to go through the hassle with the insurance company and CCS in the future. 

Thursday, August 25, 2011

It's been awhile... but we've been having fun

Can't believe I haven't posted in over three weeks. Sorry, but things have been busy. We went on a little vacation to the beach with friends and had a great time.   The weather was great and the kids were actually very happy most of the time.  Dylan is now a speed roller and was rolling all over the place to get off the blanket so he could put his hands and feet in the sand.  He was so proud of himself.  Luke is now nine months old and as big and happy as can be.  Hailey is growing up so fast!  She is such a independent girl now and as you can see most of the pictures are of the boys because she was too busy playing with her friends to come over and smile for me. 

He loves his feet and will hold them all the time.

Big boy standing.

Dylan refused to keep his hat and sunglasses on.

The Jumperoo is pure joy for Dylan.

My three precious pies!

I also wanted to give a little update on the fundraiser.  We have just placed the order for Dylan's gait trainer and the PT told us it would probably take a few weeks to get so we are anxiously waiting.  Dylan has still been practicing in the one that we have on loan and is doing great in it.  He is scooting, forward I may add, all over the place and is occasionally taking reciprocal steps!  The forward motion is the most exciting for me to see him do because up until now he would only go backward. 

Dylan has also received an ipad  from his very generous Papa Bob.  It is an amazing device and I am very impressed with all of the special needs apps and capabilities.  Dylan really responds to a few of the special games I downloaded for him.  It is very interactive, I love it! 

Once again I want to say thank you so much for all the support and love you have shown for our little miracle.  XOXO

Monday, August 1, 2011


Check out our sneaky boy.  He figured this out all on his own.   I found him sitting with his feet hanging out of the crib looking over the side when I went in to check on him last night.  I was very excited!  GO DYLAN!