Hi all sorry it's been a while.....how's it going?

[Misspoker]

 Hey everyone,

I just thought I would check to see how everyone is doing. 

Our lives have changed a lot in the last few weeks.  Sierra and I have decided to move to Texas so she can be closer to her father.  We left Connecticut about 4 weeks ago and spent a couple of weeks in North Carolina with my mother (Sierra's Nana), whom she dearly loves but is not always as consistent as I am.  We enjoyed our visit and now have been in TX for a little over a week. 

Sierra and her father have a good connection and he understands her a little better in some ways than I do.  I think he may have the deletion too but he has never been tested and I doubt he ever will.  Even if he does, it makes no difference because he loves her and she loves him and they have a strong bond.  He hasn't taken the initiative to learn a lot about her syndrome but I am hoping he will now that we are closer and he is getting to spend more time with her.  All in all, I think it will be a good change for Sierra, it is just taking time to get through the adjustments to the different enviornment, people, and other things.

I hope you are all doing well and would enjoy updates on your lives.

Take care!

[BrendaChas3]

Hi Sandi and everyone,  Well best of luck to you and your family in Texas.  I was watching the national weather forecast this morning...sure is hot down there!  Keep cool.  I am glad that Sierra is closer to her Dad..like you said..sometimes Dads have a different perspective of their kids than Moms.  I know for me...I am constantly trying to get Billy to the next milestone where my husband..(Billys Dad) is all about fun and games and just has a good time with Billy and rarely sees the deletion in Billy.  Billy is doing good...He'll be starting school up again after the 4th for the summer.  He really enjoys it.  He is very social and enjoys learning through play.  He is starting to take independent steps away from his walker so we are all excited about that.  Langauge is still the issue we are working on.  He is 3 (3/25)  still babbling like a 9-12 month old.  He pronounces the 1st letter of a word and tries to get the rest out but its tough.  I can see the light at the end of the tunnel with gross motor, but I can't see it with expressive language.  Any thoughts!

Brenda

[Mom_2_Boyz]

Language is hard.  I wish I had good suggestions for you and I would be using them myself!  LOL.  My son is 8 (3/25 also) and he STILL struggles daily.  People struggle to understand everything he says.  He's been in speech therapy since he was 18 months old.  He has been in therapy both at school and private therapy, generally at the same time (so about 2 hours total a week).  We had several therapists tell us we just have to have him repeat the exercies over and over and over and hope that with the insane amount of repetition and with age he will eventually get it.  We have also been told to open our minds to the idea of augmentive communication devices. 

Nothing really new here.  Drew is loving summer because he gets to sit around and do a lot of nothing.  I beed to kick it in gear and start doing a lot of speech therpay activities and some reading and math activities.  He has had more than enough XBOX!  LOL.  THey DO NOT want to do the sphincter pharyngeoplasty right now.  GRRRR... They want him to really work on speech therapy before any surgical intervention.  I get what they are getting at, but I don't know if they know that he has been pushing, pushing, pushing his whole life and it rarely gets much better than this.  It's just frusterating to have the experts tell you what they know clinically and yet you know what you know about your child.  Fine- I'll push him like a mad woman and nothing will change and they probably still won't believe it.  Or then they do the surgery.  Whatever... I'm just the mom, what do I know anyway?  ;)