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!

Watery and Goopy Eyes Be Gone!

I took Dylan to the opthamologist on Friday to consult about his clogged tear ducts.  He has had this problem since birth and constantly has watery and goopy eyes which requires us to constantly wipe his eyes - which he hates!  It has caused a lot of additional problems with his facial aversion.  Whenever I come close to his face with a cloth he covers his face with his hands and arms.  I am a little mad at myself that I didn't get this consult sooner but his Pediatrician wanted to wait and see if he would grow out of it - my though is he would of grown out of it by now so lets fix the problem.  It is a relatively quick procedure (about 5 minutes) where the doctor uses a little probe to open the tear duct.  The great part is that he doesn't have to go under general anesthesia, they just use a little sedation.  This procedure will take place on June 14th and I can't wait to finally see his eyes clear and goop free!

Here are some cute pics from the last few weeks, enjoy!

Playing in the sandbox with his girlfriends.

Cutie patooties!

Swimming with sissy.

Chillin' in the pool.

A New Toy

Thanks to Auntie Kim and all of her connections we were able to get a Jump-o-lene for free!  The kids absolutely loved it and Dylan thought it was soooo much fun.  He thought the best part was when Hailey would jump and bounce him all around - he was laughing and smiling so much.

Luke thought it was pretty fun too.

This was Dylan just chillin' and sitting on the grass while I got the Jump-o-lene ready.  I could not believe how long he sat there for - over 15 minutes without falling over!

He can stand pretty good too.  :)

Mother's Day 2011

We missed our annual lake trip this year.  Things have just been too crazy around here to fit it all in.  I did have a wonderful Mother's Day and am blessed, blessed, blessed with the most amazing babes!

Hailey - you made me a mommy for the first time.  You are so beautiful, smart, creative, and loving.  You are my one and only princess and I love you so very much.

Dylan - you are my little fighter!  You have taught me so much about life and love.  Because of you I am a better person.  Mommy loves you more than you will ever know.

Luke - my chunky monkey.  You are my shining light.  You are the happiest, most adorable baby I have ever seen and I love you with all my heart!

I am one very blessed mommy!  Thank you to my husband for giving me three of the most wonderful, amazing, and loving babies in the world! 

Dylan was checking out Auntie Kim's ipad - we might have to save our money for one.  Dylan really responded to it.  It seems like it would be a wonderful and very interactive toy for him.

OT Eval and Fun at the Park

Today Dylan had his OT evaluation with California Children's Services.  He has had three months of what they call "intensive therapy" that consists of two half hour sessions a week.  We decided to focus on oral motor therapy during this time.  I am proud to announce that he has met all of his goals that we set for him.  Dylan now allows us to actually get into his mouth to brush his teeth and perform cheek stretches.  He is now able to chew, bite and can lateralize his tongue to move the food over to his molars.  He is able to let us know when he wants the next bite by reaching for the food and/or cup for a drink.  These have all been wonderful accomplishments for Dylan and we know that he will continue to move forward with his oral motor skills.  

Our next set of goals include him being able to chew harder food such as meat and start finger feeding.  We have always had a hard time with the self feeding thing.  Dylan will hold the food, spoon or cup but doesn't seem to know what to do with it when it is in his hand unless we guide him.  He will usually just hold the food and wave it around and then drop it.  We also want him to obtain lip closure when he drinks from his cup in order for him eventually be able to drink out of a straw.   We definitely have our work cut out for us but I know that in time he will accomplish these goals.

Now on to more fun stuff.  This afternoon we met my friend Angela and her kiddos at the park.  The kids had a great time running around, swinging and playing in the sand.  Luke had his first ride in a swing and loved every minute of it.  Dylan always loves swinging, especially when the other kids push him, it is very cute.  He smiles from ear to ear and laughs and squeals with delight.  Here are some of the pics, enjoy!

Dyl had to show off his monkey bar skills.

Zoey loves Luke