Our Amazing Little Pickle

It has been a really long time since I have had a chance to sit down and blog about our little pickle.  Time has gotten away from me.  School coming to and end and summer beginning has had me in a whirlwind of work, appointments, vacation and just plain fun.  I have been wanted to post an update for quite some time because so much has happened. 

Last month we attended a Regional 4p- gathering and got to reunite with families that we met four years ago when Dylan was just three months old and met a lot of new ones.  It is always so great to be able to talk with other parents who completely understand and just "get it."  I felt very fortunate that we lived only about 20 miles away from where the gathering took place and were able to attend. 

Dylan has made recent progress in his means of mobility over the last few months.  He now is a pro booty scooter and gets around the house pretty darn fast.  He is quick to scoot into the office and dump out the trash can so that he can make a complete mess of all the papers I have thrown away.  He is quite proud of himself I might add.  I often find him scooting around the house getting into mischief - but I do love it!  It definitely is the little things. :)  He is also now able to walk in his gait trainer without the crotch strap/seat.  He only needs the chest support!  He can also propel the walker himself - someone usually would have to push him from behind but now he has figured out that he can move it himself.  This accomplishment has been a year in the making and I couldn't be happier.  I know that independent walking will come eventually, just at his own time. 

Dylan can hold his own sippy cup and drink on his own.  He does tend to dribble and makes little wet spots on the floor but I don't mind because he is holding his own cup!!!

Dylan continues to be the light of our lives and brings a smile to everyone's face.   

Dylan is 4!

Is this even possible, I still can't believe that our little pickle is 4!  I am actually very behind in posting this, his birthday was February 20th, I am just a crazy mom that hasn't had a second free to even post this.  My poor blog is suffering because of my lack of free time.  Hey, it isn't easy having three kiddos, working, husband, life, etc...  I wish I had more time to write because I really enjoy it, but even tonight my time is limited, my eyes and body are tired after working a 13 hour day.  So I will make it short and sweet.

Dylan is the most amazing four year old I know.  He continues to exceed expectations and everyone loves him so very much.  The week of his birthday he decided it was time to hold and drink out of his sippy cup and he thought that maybe he would like to walk unassisted (with someone just pushing the walker along but not holding on to him) with his reverse walker.  I think he is just showing off now because he used to only walk for me but now he walks for his teachers at school too!  He is so proud of himself and loves to watch his feet as he takes those big steps, and sometimes he just has to look back and smile at whoever is walking with him.  The look on his face says "DID YOU SEE THAT, I JUST WALKED ACROSS THE YARD!"   

We are all so proud of him and can't wait to see what this next year brings.  Happy Birthday Dylan!

One of those days...

Today was one of those days where I was reminded of Wolf-Hirschhorn Syndrome and it hit me hard.  Today Dylan was invited to a birthday party of a boy in his class.  Dylan attends a pre-school with an inclusion program where 20% of the children have special needs and 80% are typical.  This was a "typical" party, his first that he has ever been invited to, other than close friends and family.  I was excited to take him, Dylan was excited to put on his jacket and shoes because he knew that we were going somewhere.  The moment I walked in I already felt sad.  It was at one of those indoor play places and kids were running everywhere.  They had bouncy houses,slides,toys and things to climb on - mostly things that were way too advanced for my boy.  So amongst all the craziness I found a spot on the carpet for my little man and we played - and by playing I mean I handed him a toy that he would pick up and look at for a minute then throw and I would put it back in his lap and we would repeat this over and over until he got tired of it.

He didn't interact with any of the other children.  His classmates would come by and say "hi Dylan!" and I would lift his arm up to wave and he would turn his head. 

I know that he was doing this because it was most likely over stimulating for him but still, it made me sad.  I know that Dylan will never be "normal" or "typical" and no amount of therapy will "fix" him but I wanted so much today to see him running around with his classmates and jumping in the bouncy house, heck I wanted to see him sitting at the table with the rest of group to sing "Happy Birthday" but instead he sat in his stroller at the end of the table with me. 

I shed a tear tonight for what could have been, for what I had hoped for, but then was reminded by my mom that Dylan isn't sad that he has Wolf-Hirschhorn Syndrome.  He was happy to go somewhere new, he was happy that we got in the car, he was happy to be with me - his crazy dancing, clapping, made-up-song singing mom who can make him smile from ear to ear. 

Coming to an end...

As the year is coming to an end I wanted to reflect back on all that has happened.  It has been a very good year, except on December 12th we lost our beloved Huckleberry.  Dylan and Huck had a very special bond and it has been very hard for Dylan to understand where his 'best bud' has gone. :(  We couldn't have asked for a better, more loyal, fun-loving dog like Huck and our home will not be the same without him.

• This year Dylan  phased out of the birth to 3 program through the Regional Center and started pre-school (5 days/week & 3 hours/day) and it has been fantastic for him!
• He still attends Physical Therapy, Occupational Therapy and Speech Therapy weekly.
• He continues to improve on his strength and gross and fine motor skills and he can now:
• grasp objects (such as a small toy or ball) and take them from one container and put them in another
• with minimal guidance he can pick up his large toy coins and put them in the piggy bank (a very narrow slot)
• he is more interested in his toys that make noise and will purposely roll over to one and hit the button to make it play music.
• he learned how to take reciprocal steps and can now walk across a room with only light/minimal assistance.
• he can stand up against the wall when placed there and he can pull himself from sit to stand when prompted. 
• his grasp is getting much stronger and he will now actively grab and hold on to things
• he can push himself up to sitting independently and can pivot all around on his bum
• his main means of mobility is still rolling but he is quite the speed roller so look out!
• he has begun to spoon feed himself when the spoon is placed in his hand - this skill is still hit or miss but when he really wants to feed himself he will. 
• he can say "MAMA" and does so all the time.  He will still babble and makes a lot of his own sounds and when he is really excited he will call out for his sister Hailey, but it sounds more like "HAYYEEE"
• he can sign "more" and "all-done" and is becoming more consistent in doing so
• we have even heard him say "again, again, again" during a speech therapy session - his therapist said she heard it too, so I am going to count it.
• he recently started to clap!
• We made it through the year with NO hospitalizations and only a few minor colds. 
• He loves the vacuum cleaner and will follow me around the house laughing and smiling when I am vacuuming - the only down fall is that he gets really mad when I turn it off. 
• We had a wonderful Christmas this year and I was so happy to see Dylan excited about his gifts.

 Dylan loves our horses and LOVES riding - he even cries when it is time to get off.  This year my mom bought the kids their own saddle - Hailey and Dylan were very excited, Luke not so much (he still is a little scared of the horses).

Sadly this was the best picture we could get of us all together.

Some may look at these accomplishment and think they are so minor, but in our lives they are HUGE!!!  Dylan has continued to show slow and steady progress and we can't wait to see what this next year brings. 

I wanted to end this post with a few recent videos, enjoy!



Please ignore my very loud and high pitched voice

Happy New Year!

Dylan The Great!

I had to share this video from PT today - and if you don't have a child that struggles with low tone and pelvic instability you won't understand how HUGE this accomplishment is.  Today was the first time EVER that Dylan has stood like this... I will stop rambling and let the video show him off.

Also, just to brag a little more - he had already been standing for well over 2-3 minutes before I grabbed my camera.  Dylan you are our little SUPERSTAR!!!

ShutterMom Workshop

Last weekend I attended my first photography workshop.  Up until now I have mostly been self taught and learning from my sister and another photographer friend.  It was a wonderful workshop.  I learned so much and I am excited to share a few of my pics from that day.  I lucked out and Mitch was able to bring the kids down for some practice.  I have been having so much fun letting my creative side come out. :)

2012 WHS Halloween Contest

WolfHirschhorn.org is having a Halloween costume contest.  Please go to the site and vote.  All the children on the site are affected with Wolf Hirschhorn Syndrome and all of them are completely adorable.  So please take a minute out of your busy day and vote. :)  Voting ends Saturday.  Thanks and love to you all.

http://wolfhirschhorn.org/2012-halloween-contest/