IEP & parent teacher conference

So we had our 3rd IEP for Isaac - they are adding PT and OT to the ST he's receiving at school.  This will be in addition to the therapies he receives privately (PT, ST, and OT) each week.  We are excited.  Its nice to hear them talk about his progress. 

When we bombarded them with our questions about food, they all said he's doing fine around it (and they eat family style), not trying to take other kids and so on.  They also said that there has been no aggression this year, no pinching, no biting.  They believe and I agree, its because he can communicate so much better this year. 

He also started Music therapy about a month ago, and I'm pretty sure he'd leave us for his therapist if he could.  Any lady who will play the piano for this boy has his heart forever. 

We are prepping for these food filled holidays coming up - trying to work on our game plan for all of it.  Keeping Isaac from gaining a bunch of weight before his surgery in January has us a little on edge, but we are always a little on edge I guess.  :) 

Now onto the important stuff, what should Santa bring a cute little 4 year old boy for Christmas . . .

Isaac the ring bearer

Here's Isaac and Lucy at my brother's wedding a couple of weekends ago.  I love this picture and had to show him off!!! 

Been awhile - eye sugery went well

Quick update  :)  - Isaac had eye surgery September 18th and it went well - his eyes are much straighter now. 

Oh and guess who is in the 75th for weight.  Yeah, Isaac is looking good.  We had his 4 year shots and he was 42 lbs and around 41 inches. 

Just thought I'd post a few pictures of what we have been up to. 

Isaac had to read Jack's books to him that he got for his 1st birthday, as they opened them  :)

Isaac's not afraid of the tigers for sure, but poor Jack wouldn't take his eyes off the tiger

Enjoying the big slide

This is what you get when you ask for silly faces . . .

We see the orthopedic surgeon next week to talk about getting a larger  VEPTR device and taking out the old one.  Just wanted to give a quick update.  He's enjoying preschool a lot this year - and really just growing into a fun little nut like the rest of our goofy brood.  :)

Happy 4th Birthday Isaac!

  Isaac and Jack trying out the new wagon

 Isaac showing off his pirate hat

 The wiley band of misfit pirates at the party

 Isaac cheesing with Jack

Getting close to a rhino - we went to the Wilds the weekend before his birthday and he really loved it, despite the expression in this picture.  :)

Happy 4th Birthday Isaac!  The pirate party was so much fun, with all kinds of family and friends showing up.  He was in  heaven.  I know everyone says it, but I really can't believe its been four years since you showed up, because I really don't remember life without you! 

Oh and he even got to have his birthday card read on The Sunny Side Up Show on Sprout by Chica.  He thought that was pretty awesome too.   Barney said "Happy Birthday" - I couldn't top that next year if I tried.  :) 

Anyone else use the Genotropin Pen 5??

We had the pen back when he was 2, but complained about it leaking (as in there wouldn't be enough in there for the last dose) and were switched back to mini quicks.  Apparently at that time, many others had the same problem.  So ever since we've been on the mini quick indivicual shots. 

We switched to the pen almost a month ago, and maybe we are just paranoid, but we worry he's not getting all of the shot.  With the mini quick shots, it was simple.  There was no smell, no drop on the end of the needle when you pull it out.  But with the pen, no matter if you hold it in his leg for 10 seconds or 15 seconds or a year, it still comes out with a drop on the end, and it still smells.  I'm just curious as to other's experiences - if its something to be concerned about.  The dosage he's on right now doesn't come in the mini quicks, so we had to go to this for the increase.  So if anyone has any guidance I'd appreciate it. 

Also, we belted the refrigerator.  Isaac has been getting in the fridge but not really for the food.  Mostly just to play and nose around.  So we had to keep him out - and ended up cutting a canvas belt and strapping the two fridge doors together.  The belt is attached to one of the doors by a plastic strap so it won't fall off.  But like everything else with this syndrome, we always worry its the worst, the beginning of the monster.  We have to be prepared I guess. 

Enough rambling, for once all 3 of my children were napping so I decided to post - and of course 2 of the 3 are now up.  :)  I will post pictures of Isaac's 4th birthday soon!!!

The Busy Summer Begins

So we went to the Outer Banks for Vacation the first week of June and had a great time - then back home again to start extended school year and then off to Columbus this past week to see Orthopedics and go to the PWS Clinic.  I am in a blur it feels.  His VEPTR on the right side is holding on by a "whisper" but we are holding out until October to switch the entire thing out - its still keeping the boy straight and the infection seems to be gone (yippee) so we are happy.  We just hope we can make it that long without any excitement. 

Our PWS clinic appointment went well - they increased us to .7 dose of Hgh over our .6 - so he's growing.  Weight and height were going with his growth curve so they were pleased.  Diet is to remain the same.  Still unsure of how long we are staying with the clinic there - its just that the VEPTR has kind of locked us in there and we go to so many appointments with that.  Just don't know.  Eric wants to see about going somewhere in Pittsburgh maybe, and sticking with the Ortho in Columbus.  We are so indecisive - its amazing we ever married.  :) 

Summer is going great - he's really chatting us up - we love it!  He's turning 4 in July and he's having a pirate party!  Which we thought he'd be excited about but then he told us, "NO, NO pirate party, handy manny party."  So you want a handy party, "No, Barney party"  You want a Barney party "No, scooby doo"  And on it goes, but he's really getting excited about his birthday, just not the pirates.  :)  OH and he's all about the swimming these days. 

Katie Beckett

http://www.nytimes.com/2012/05/23/us/katie-beckett-who-inspired-health-reform-dies-at-34.html?_r=2

I was told when he was first born I needed to apply for a "Katie Beckett" waiver - its amazing what has come about in our country due to this wonderful woman and her family fighting for their daughter to have a better life. 

Isaac has been on WV's Waiver program for almost a year and it is amazing.  Our waiver provides him a special needs medical card and access and funding for therapies, respite, nursing, all kinds of things.  Its amazing what is available to my son through this program - Its amazing how much better you can sleep at night not worrying about whether your insurance will cover everything - and knowing that there are so many wonderful resources out there.  I'm thankful to Katie Beckett and all that she accomplished for so many out there.  RIP.