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!

Moments

O.K., I seriously just spent over an hour on a post then deleted it.  It was one of those woe is me posts.  I am trying hard to keep my New Years Resolutions (you can read those HERE) so as I hit the delete button I told Hailey to grab a blanket and decided to strip my two little boys down to their Huggies and head outside.  It was a beautiful day here in So. Cal. and  I needed a little slap in the face to get my mind on track.  This did the trick...

I want to pinch that sweet little tooshie!  Can you say OMG CUTE!

Dylan was not cooperating for my photo shoot and only wanted to lay on his back and scoot around on the grass.  And yes, Luke is totally sporting a foe-hawk. 

Luke wants to suck on anything and everything, so right before I took this pic he was sucking on Dylan's arm, which Dyl thought was pretty funny.

Oh, how I love these faces.  They can make me completely crazy at times but it is all worth it for moments like this.  I am asked constantly how I do it all.  The truth is I don't really know.  I try to just go with it and usually it all works out.

Luke, like a big squishy marshmallow, how you make me smile.  You have made our family complete and so happy these last seven months.

This was Dylan's idea of fun - gosh MOM can you stop with the camera and let me swing!

I try so hard in my head to summarize the recent events/moments in our lives and when I sit down to write a blog post I find it difficult when a five year old wiggles my chair.   Yes, Hailey, you are the culprit.  This past week Hailey had her last day of pre-school.   It is crazy how time flies.  My baby"graduated" from pre-school!  I told myself I couldn't cry because I was not wearing waterproof mascara but I think I did shed a tear or two.  Dylan's receptive language is expanding and he now can follow five commands/questions.  He also has taken a big interest when Luke is crying in the stroller.  He will sit forward and look and reach over the middle of the stroller and put his hand on Luke.  It's as if he is saying don't cry little bro, I'm here.   I love it!  He is also trying more and more to sit up using his arms rather than just doing a big sit up.  Luke is sitting up very well and is babbling up a storm.  He has the cutest squeal and laugh that melts my heart.  He is still not to sure if he is liking the baby food yet and prefers mommy's milk - so for all of you that saw the Michelin Man picture of him and thought - what must she be feeding him?  It's all breastmilk (Hailey looked exactly the same). 

The Tiny Tigers Cheer Squad - too cute for words.  Let's put it this way, their little performance made me cry it was that cute.

I know what you are thinking - Is this post ever going to end?!  Yeah, but a few last pictures of my eye goop free boy. 

THE END!

Goopy eyes are now a thing of the past

Dylan went in this morning to have his clogged tear ducts opened.  This is a problem that he has had since birth and we have been dealing with watery and very goopy eyes on a daily basis.  Some days it is so bad that he gets a rash on his cheeks from all the constant tearing.  The procedure was a success!  He did great with the anesthesia and is home with little swollen eyes but doing fine.  Thanks for everyone's prayers and well wishes.  :)

I hate being the squeaky wheel!

I hate to have to fight for what Dylan needs and deserves.  I HATE confrontation.  I usually end up getting all red and flustered.  I am feeling this way because last week Dylan had his six month evaluation at California Children's Services where he receives additional and much needed therapy on top of his therapy provided by the Regional Center.  The great thing about CCS is that they provide therapy services and equipment for the child until age 21, unlike Regional Center that ends at age 3. The eval was conducted by a Pediatrician, Social Worker and an OT.  

It started off by the doc saying "so he is crawling and toddling around furniture now, right?"  I hate when this happens because instead of me going over all that Dylan has accomplished I feel like all I am saying is no, no, no.  We talked for a few more minutes and then he did his physical exam and told me that Dylan barely qualifies for therapy services because he does not have high tone but low tone and to not be surprised if he gets dropped next year!  I was shocked and didn't know what to say except "can't you see that he needs OT and PT desperately?"  Which he replied "yes, but hypotonia is not a covered diagnosis."  All I could say was "are you kidding me!?"  I guess the state of California totally disregards a rare chromosomal disorder that causes multiple physical and mental delays because I was also told that they didn't know how he even got approved in the first place.

By now I was already getting flushed and upset so I decided to see what I could get while he has CCS.  I told them I wanted to get Dylan a gait trainer, a much needed piece of equipment that will help him learn how to walk.  I was told that CCS will only approve a gait trainer if Dylan is taking "purposeful steps," but they could get me a wheelchair.  A WHEELCHAIR!!!  NO! Dylan does not need a wheelchair he NEEDS A GAIT TRAINER!  (Even writing this now I can feel the steam rising from my head.)  Why, oh why must I fight for what Dylan needs? Is this how it is always going to be?  I hate it!  Now don't get me wrong, I have not given up and soon I will be posting a picture of Dylan in his gait trainer.  

Now would you not approve a gait trainer for this beautiful little boy who is standing so strong, but instead like to see him in a wheelchair?

Yeah, I didn't think so.

 

To end this post on a happy note here are some pics and a video from this weekend.  It's not the best video because the camera's battery was low but Dylan loved the water slide!

With Daddy

Luke - 7 months old

Not the best pic but you can still see Dylan's very happy face going down the slide with Hailey

Carpenteria

We took a mini-vacation last week to Carpenteria State Beach.  The weather was beautiful and we all had a great time.  It was a great way to start off the summer.

Dylan didn't want to stand on the cold sand.

Luke with Great Grandma E.

The boys were chillin' at the beach in style.

Hailey and her best buds - Lila and Siddha.

Dylan and Grandma

Luke was BURSTING from the BabyBjorn but enjoyed breaking mommy's back.

The boys in the bike trailer - they loved rolling around the campground.

My three cutie-patooties!