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!

Summer is Here!

Before I start in about summer, I want to say a big THANK YOU to my sister (aka Auntie Kerri)!  She made Dylan an awesome tummy time bar.  We got the idea from Taylorbar, it is a device that helps keep kiddos that refuse tummy time on their tummies by keeping them from rolling over.  Now, I would have purchased a Taylorbar but at $85 it was a little steep so if figured how hard is it to make?  Well a few hours of sewing and $7 later we have the DylanBar -

Tummy time is something that we have always struggled with with Dylan.  He immediately flips over and now, for the past few months, has been back scooting - which don't get me wrong, we are very happy that he has found a way to be mobile but we still really need to encourage crawling and this might be the way.  He has done very well with it so far and is tolerating about 10 minutes at a time.  Dylan is very weak in his upper body and pretty much has no muscle tone in his chest and upper arms so it is very important for him to have as much tummy time as possible.  I will post a video later.

To switch gears - Summer is here and it is getting HOT!  So we have had a great time in Grandma and Grandpa's pool and of course the sprinklers and the puddle pool.  Luke and Dylan both love to splash and kick in the water and I think they really enjoy seeing how wet they can get me in the process.

This was how Dylan spent the afternoon in the pool - holding his feet and bobbing all around.

It couldn't be summer without bike riding.  What better time is there to learn to ride without training wheels than a warm summer evening?  FYI... Hailey learned in about five minutes!  Yeah, that's my little pro, I am one proud momma!