Dana Point Beach

We had another fun weekend at the beach.  The weather was great and the water was actually kind of warm.  Hailey had a great time playing in the water and building sand castles with My Little Ponies on top and Dylan had a great time holding the shovel.  Dylan loved the sand and every time we laid him down on the towel he would scoot and/or roll his way off of it until he was back on the sand.  It was very cute until he would get handfuls of sand and then put his hands near his eyes. 

I had to add another scooting video because he is doing so well with it.  As long as he has something to push his feet against he can scoot all across the living room.

Scootin' and Swimmin'

The weather has been so warm here that I thought it would be more fun to set up the water-way pool outside than in the bathtub.  The kids had a great time and Dylan splashed and kicked for over 40 minutes.  He just loves the water.

This video was taken today with Dylan's therapist.  Dana brought over a scooter board on wheels and we first thought that maybe he wouldn't be ready for this, but he proved us wrong very quickly.  He was doing so great scooting all around the house following Hailey.  Dana and I were crying because we were so excited.  Keep up with all of those accomplishments little man - we love you!!!

Sitting, Jumping and Rockin' on all Fours

I love that smile, he is sooooo excited.

Victory!  Dylan has been able to hold the sitting position for about 15-20 seconds for the last few days.  He tends to get a little distracted and will start to look around and lose his balance.  He is getting stronger everyday.  We are all so proud of him. :)

Today Dylan finally figured out how to jump in his jumper.   Before he would just rock back and forth, but after he saw Hailey jumping he thought that looked pretty fun too.  I am so excited that he finally wanted to push off with his feet and use his leg muscles.


This video was from the other night.  He is slowly regaining his upper body strength since the body cast was removed and now every time we practice the crawling position he just wants to rock back and forth.  Way to go Pickle - we love you!

Some days I forget...

Most days I seem to forget that Dylan has WHS.  I can go on about my day as if nothing is wrong or as if nothing is different about my life.  Then there are other days when I seem to be reminded constantly.  Even being pregnant again and knowing that everything is "normal" with this pregnancy makes me worry about our upcoming addition and the impact he will have on Dylan.  I find myself thinking, "how soon will the new baby surpass Dylan in growth and development?"  I am reminded when I am out and about with him and someone approaches the stroller, talking to him and he looks off the other way, not able to engage at all.  I usually say "oh, he's just tired."  They then smile and walk away.  Even when I am around friends and family I find that the conversation usually shifts to how Dylan is different.  I know that they don't mean any harm and love him terribly, but I wish that everyone could just accept that YES his head is a little flat, YES his eyes are always goopy and tearing, YES he may not respond to everyone, YES he is tiny, YES it is difficult to feed him, YES he is floppy but please try to remember that those comments hurt me and make it a constant reminder to me of Dylan's syndrome.  It's definitely not easy and I wish everyday that Dylan was born with all of his chromosomes intact but there is nothing I can do to change any of it.  I wish that we could all see past it but I know that this is probably not possible.  I seem to find myself deeply saddened and in a way depressed by all of this and I wish that I would feel differently and that the sad days would just go away.

I wish that the title WHS would release me from all of these sad feelings.  I want to live life happily without this title hanging over.  When he was first diagnosed I remember feeling like I was dying inside.  My heart was so broken I didn't know if I would ever recover.  I couldn't look at Dylan without thinking about WHS.  I know now that I will always be aware of its presence in our life and that's o.k. because there is no changing it.  WHS has brought a new meaning to my life - it has awakened me to a life that I never imagined I would have to live.  This has been a good thing. 

I don't want our family to be looked at as being "different," so that is why I can usually brush off comments, questions or looks and pretend that it doesn't bother me.  I wish that I could just say, "yeah he has WHS, so what" and move on.  I think that I am finally getting to that place but, it's taken me a long time. 

Dylan is now 16 months old and he is my little ray of sunshine.  When he smiles and his beautiful blue eyes shine he can light up a room.  When he squeals with delight and kicks his legs and flings his arms so hard that his whole body jumps it makes my heart go pitty pat.  When he is working on a new skill or trying to regain an old one that was lost I can see the determination in his eyes.  When his sister hugs him so tight and kisses him so hard that I am afraid he is going to cry or choke, but instead he just gives her a big smile and it makes me smile too.  He has endured more in his 16 months than most people will have to in a life time but I always find him in his crib smiling and happy in the morning.  He is so amazing.  He has made my life so amazing. 

Having my babes has been the most wonderful thing to ever happen to me.  I am completely grateful for my fantastic life.  Sure there can be a lot of rough spots but the beauty of life always seems to overshadow.  I will try to remind myself of this the next time I have these sad feelings (who knows this could happen tomorrow) and remember the ultimate beauty that my babes bring to my life.

Ultrasound Pictures

Baby face and part of an arm

1st footprint

Today was my formal ultrasound with the Perinatologist.  I am now 18.5weeks and everything is going smoothly.  The baby is measuring right on track and everything appeared to be fine.  The doc looked at everything extra close just to be sure and he is confident that this is a healthy baby.  I apologize for the quality of the ultrasound pictures but we still do not have a scanner and for some reason I have just never gotten around to buying one. 

 

Leg Braces and a Growing Boy

Dylan got his leg braces yesterday.  I still need to find him little shoes that will fit over them so he doesn't slip.  He did pretty good with them this morning.  He is tolerating standing for a few minutes at a time and then he needs to take a brake.  They only need to be on his legs when we are working on standing, so my plan is to work with him 3 times a day so that he can build up his strength and tolerance.  Hopefully we will only need to use these for a few months and by then with the Vitamin D supplements and weight bearing his bones will be strong enough to support him on their own. 

Dylan also had his 15 month check up with the pediatrician - he is 16 months now but his appointment was delayed because of the body cast.  Here is how he measures up:

Weight = 15lbs 1oz!!!  That is a gain of 1 lb in a month, this is a huge gain for Dylan.  He has been hovering around 14lbs for the past 3-4 months and I never thought the day would come when the scale finally said he was over 15lbs.  That brings him to the 70th percentile on the WHS growth chart.

Length = 28"!!! This is a growth of 2" since his last check up, 60th percentile on the WHS growth chart.

Head =  16" -  not a huge growth here but still a gain of 1/2" since the last measurement bringing him to the 40th percentile on the WHS growth chart.

The Pediatrician thought that he never looked better.  She was so proud of all of his growth and development.  It was a good appointment, I walked out of the office with a big smile on my face.  Way to grow Dylan!