Saturday, December 29, 2012

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!

Monday, November 19, 2012

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!!!

Sunday, November 18, 2012

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. :)


Thursday, November 8, 2012

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/

Monday, October 29, 2012

My Three Little Pumpkins

 Halloween is in two days!  I still don't quite know where the time has gone.  In the last week I have taken the kids to three different pumpkin patches - mostly for my own sake to try to get some cute pictures but this was the best I could get.  Luke kept on walking up to the camera, Hailey wouldn't hold still and Dylan was so distracted by everyone and everything that I could barely get him to smile. 



 Once again this year I made the kids costumes - Hailey wanted to be the three little pumpkins, and the boys agreed, so off to the fabric store I went and here are the results... I think they are pretty darn cute.






 House of pumpkins
 You can't see but Luke is holding Dylan's hand - he sure does love his big brother.

 Buddies watching the chicken show - Dylan thought it was hilarious!
 I want this one mommy.

 The best part of all the pumpkin patches for Luke was this one - he was in heaven with all the wagons and tractors.  

Tuesday, October 23, 2012

First Parent-Teacher Conference

Today we had Dylan's first parent-teacher conference. I will say again how much I absolutely LOVE this school! They told us that Dylan continues to progress everyday. He is vocalizing and interacting with his classmates more and more. Often times his "typical" peers will ask to play with him, which absolutely warms my heart. He is learning how to make choices between two activities, his fine motor skills are improving, and everyone loves him so so much. It was a great meeting. They are staying on track of his goals and want to see him reach his full potential. I am so very happy.

I wanted to share a few videos from PT the other day. This one he actually signs "all done."

We are working on Dylan learning how to get down safely, practice makes perfect.
Lastly, here he is in the gait trainer - this is the first time he is taking steps not just scooting - can you tell his PT is excited. :)

Sunday, October 21, 2012

Busy Busy Days

Once again I find that I haven't posted since September and for that I am sorry.  My busy days have been filled with work, work and more work, the regular weekly appointments for Dylan, school, driving kids around, homework, gymnastics, oh and throw a horse to tend to in there and a house and husband and that is my life at the moment.  I am sure I missed a few things but all in all everything is good.  I even found the time to make the kids costumes again this year (Hailey's request) and I have to say they look pretty darn cute. 

Because of my tight schedule this post will be short, but I wanted to share a few videos of Dylan walking.  He is trying so hard and we are all so proud. 

Wednesday, September 12, 2012

Walking, walking and more walking

Thought I would post a few more videos of Dylan walking with some help.  We are just so very proud of our little man and all of his accomplishments these past months.

Sunday, September 9, 2012

Spoon Feeding and Some Other Stuff

Well, long time no blog.  I know, I know but time has just gotten away from me.  Dylan started back at preschool for the fall semester two weeks ago and has been doing fantastic.  He loves school.  I even have to wait till the last minute to put his shoes on because once they are on he is ready to leave and if I have him waiting around he gets mad.  He loves his teachers and smiles the moment he sees them.  He even made a friend.  :)  Dylan and his new buddy finger painted together last week - it was so sweet to see. 

Dylan is walking with assistance more and more.  He now can walk all around our house with me just lightly holding his arms.  He no longer needs encouragement to take steps - he just does it!  It is very exciting.  He also is able to bring himself up to the sitting position without putting his feet under something, or having me hold his foot down.  Once he is sitting he can pivot all around and is getting pretty fast too. 

His spoon feeding is greatly improving too.  I'll let the video do the talking. Please ignore my annoying voice.


Monday, August 6, 2012

I think this is pretty AWESOME!

Dylan surprised his PT and myself today by actually walking  (with very light support) and holding on to the treadmill.  We work on this every week.  Every Monday we go to PT and every Monday I am cheering and smiling the whole time but today I almost cried.  When Dylan enters the gym, the treadmill is the first thing we pass and the last 5 months it has been the first piece of equipment he works on with his PT.  He has never walked like this before on the treadmill, he usually just lets his feet drag when we turn it on and the belt starts moving but today he decided he was ready!




Let me tell you another awesome thing that happened today - two of Dylan's teachers from his preschool came for a home visit.  Yeah, I said a home visit!  They spent about 45 minutes observing and playing with him in his own environment so that they can get to know him even better. They wanted to see how he played with his toys and interacted with his siblings.  They are such wonderful teachers and I can't believe how they are going above and beyond to help him reach his goals for school.  I'll say it again  - I LOVE this school.

A few pics from last weekend at the park. :)



As you can tell by the look on my face the slide was faster and bumpier than I had expected - Dylan loved it though.
My sister and I had to keep taking turns taking him up in the jungle gym, every time we climbed out he would cry  - he wanted to be with all the other kids climbing around.  The moment we took him back up - instant smiles and laughter. :)

Friday, July 20, 2012

1st Day of Preschool

On Monday July 16, 2012 we took Dylan to preschool for the first time.  It started off with me carrying him into the office and him seeing Annie, the school Director, and him smiling and reaching his arms out to her.  I knew instantly that he was in good hands.  She scooped him up and off we went into the "little" classroom where all the kiddos with IEP's start off their day with a 30 minute lesson with the special education teacher, Erica.  Then they joined the rest of the kids in the "big" classroom for circle time, music and snack.  Then it's off to the playground for outside fun where Dylan played in the sandbox, rode in the wagon with a friend and drove the school bus - I was told that he was a very good driver.  :)  All of the teachers loved Dylan so much and said that he had a wonderful first day.  When I picked him up three hours later he was all smiles and so happy to see me.  He was "talking" very loudly and smiling and kicking his legs - telling me all about his day.  I think this is going to be a wonderful school for him and can't wait to see what this year brings. 

The boys getting ready to leave for school.  Dylan was very excited to have his backpack on and Luke was excited we were going "bye-bye." 

These next pictures were photos that were taken by Leila Jones a few months ago.  She was so captivated by Dylan's story she asked if she could use him as a model for her website - and because Lukey is so cute he was also a little model.  Here are some of my faves. :)