I am AMAZED!

Dylan amazed me at lunch time today.  He actually tried feeding himself!!!  We are so excited.  This is HUGE for Dylan.  Until yesterday afternoon, Dylan refused to try to feed himself.  He would hold his hands out to the side and lean forward opening his mouth as if to say "feed me."  Recently in the last month or so he would reach out and grab my hand when he was ready for the next bite but whenever I would try to put the food in his hand he would pull away.  On Wednesday my mom was watching the kids when Mitch and I were at work and she began to brainstorm as to how can we best get through to Dylan with regards to finger feeding.  She knows that Dylan has always responded well to sounds, music and noises like clapping, or banging.  So she thought what about a clicker?  So that each time he brings food to his mouth he gets the reward of hearing the much liked clicking sound.  She began working with him yesterday at snack time and he was doing well.  He was letting her put the food in his hand and she would help him bring the food to his mouth.  Today he did even better.  I am still in shock!  He actually tried feeding himself on his own!  He has never done this before, well, I will let the video speak for itself.

Please ignore my appearance as I had just finished working out.

Blessed

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. 

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

Sneaky

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!

Fundraiser Update

First and foremost, I wanted to thank everyone who participated in the Pampered Chef fundraiser.  It was a great success!  I am still waiting to hear from the consultant as to how much was raised but I know that we received A LOT of orders all over the country.  I cannot believe the response we received even from people whom I have never met, but they were a friend of a friend and heard about Dylan's story and wanted to help.  I want to thank you from the bottom of my heart for all of the generosity, support and love you have shown for Dylan and our family!!!  THANK YOU, THANK YOU, THANK YOU!  We even received numerous donations from friends and family that did not need to purchase any kitchen gadgets but wanted to help.  We love you all and are forever grateful.  We feel so very blessed to have you all in our lives.  XOXO.

I wanted to share this picture - Dylan on all fours! This is a skill that Dylan was able to do a little over a year ago (you can see that post HERE) but then lost it after he broke his leg.  It is amazing to see him holding himself up with his arms.  I am one proud Mama!

I had to share this video of the kids swimming.  Dylan's excitement and happiness is adorable and I love it.  This is his response every time he swims.



Here is a little preview of the gait trainer that we are hoping to purchase soon.  This one is on loan from Dylan's awesome PT from the Regional Center who comes to our house once a week.  She was able to get her hands on one and is letting us borrow it for the next week.   Keep in mind that this is his first time in it and I was just excited to see him scooting around in it.  I know we have a lot of work ahead of us but I am ready and I think Dylan is too.

Cuties

This is Luke's new look - tongue sticking out the side of his mouth - very cute if you ask me.

Sorry for the blurriness, camera issues, but can you see that Dylan is actually pushing off his arms!  It's a miracle, he is getting stronger!

I also wanted to share that Dylan is becoming a little mischievous lately - which makes me totally happy of course.  For example, this morning we were at breakfast with Mitch's parents and Dylan was being very good as he always is, but he was grabbing at everything on the table and dropping things on the floor, then looking over the side of his seat at the menu, spoons, crayons, etc... that he had dropped.  He actually grabbed a plate of food, that I thought was out of his reach, and threw it on the floor.  He was so proud of himself.  And, no, I was not mad, but happy that he did this.  I actually said, "good boy" as I was cleaning up the mess.  It was very exciting.  These words would probably not be coming from the mom of a "typical" 2 year old, but when you have a child with special needs that you were told would have no personality and possibly be "vegetative" times like these are memorable and make me want to call the doctor and say YOU WERE WRONG! 

Pampered Chef Fundraiser

We have been having some difficulties with our insurance and California Children's Services in obtaining a gait trainer for Dylan.  Our insurance will only cover a small portion of it and CCS still has not approved it because he is "not taking purposeful steps."  (I am not going to get into talking about CCS right now or I will be steaming out of my ears.)  This is a very valuable piece of equipment that Dylan greatly needs and will really benefit from but I wasn't sure how we would be able to afford it right now (they are a little pricey).  So, I have been thinking about doing a fundraiser for a while but, wasn't exactly sure what to do.  Then a couple months ago I attended a Pampered Chef party and the consultant told me that we could do a fundraiser for Dylan.  I figured, what the heck, lets give it a try.  So, on July 14th I will be hosting a Pampered Chef Fundraiser for Dylan. 

If you are unable to attend the party at my home and would like to make a purchase please click HERE and click on shop online then enter my first and last name into the host boxes (Kristy Fisher).    A percentage of the proceeds will go directly towards Dylan's therapy/equipment. 

Thank you all so much!  Love to you all!