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.

Oh and some more of our little Matlock

Finally got our Easter pictures done :)

They are so stinking adorable - yeah I'm super partial, but I can't help it.

Any insurance appeal tips out there?

Isaac was denied speech therapy - we've had it for half a year and now they are saying he doesn't fit the guidelines for medically necessary? Even though he fits all of the required list word for word? Even after his pediatrician did a peer to peer review twice? For real? You don't think this little boy needs speech therapy? Whatever. I'm just tired and annoyed. So any tips on insurance appeals??

Doing much better

So we had an appointment Friday 13th to get the bandages removed again - dr. said it looked really good. Hoping that 6 weeks more of antibiotics gets rid of the infection - then we can still be on board with a total revision of the device in 6 more months (switching out the entire thing on both sides). If not - other crappier alternatives exist but I am staying positive that this is just killing it. :) Isaac is feeling sooo much better singing and laughing and back to his happy self - he still has horrible balance, made obvious by the enormous pump knot on his head he got his first day back to preschool - but hoping that all starts to improve too as he gets more used to the adjustment. We also had an eye appointment, and surgery was discussed. Isaac's eyes are crossing even with his glasses on - so yeah the glasses aren't going to correct it anymore. Accommodative esotropia is the actual term for what isaac has. Anyways, just wanted to update.

Yikes, rough couple of weeks

So March 29th we went to columbus to get his surgical dressing taken off - he was kind of grouchy but I didn't think anything of it. By the time we got home he had a fever of 103 and I couldn't get it down. No other symptoms really. We took him to the pediatrician's office the next day. They checked for strep and wondered if it might be a virus. Fever stuck with us all weekend and the scar on the left side of his back became swollen and red. By Monday we were in the ER here, after torturing him for a few hours we were sent back to Columbus where they opened his back up again Monday night.
They cleaned out the wound, but the device was kept in. We stayed in the hospital until Wednesday on heavy antibiotics and waiting to see what the tests showed the infection was. Thursday we found out it was staph, and switched antibiotics for the third time. Friday we found out it wasn't RSV. So he'll be on antibiotics for at least 6 weeks - he still acts like he's in pain - so he's still on Tylenol with codeine. Its just been wild - but we really hope the infection didn't make it to the device, because having to get that removed sounds just awful for the poor boy.
We go back Friday again to have this dressing taken off and make sure everything is going ok. So keep Isaac in your prayers. What an awful way for a kid to spend his spring break from pre-k. :(

Surgery went well

So this time he only had to have a lengthening done, next time we'll have to have to change out the top portion of the device changed out - but we are thankful this one is over for now. He did great and was moving around soon after.

He had a room (suite actually) in the new portion of Nationwide Children's Hospital this time. It was very nice. We tried out the new playroom too. Overall we could ask for a better outcome. :)

Oh and anyone else notice how hard it is to not give comfort with food after a big procedure like this? It feels like I'm going against nature here to not feed him treats to make him feel better.

Anyways, he's doing great climbing the walls stuck here with mommy and the two others.

More cute

I had to throw in some of 5 month old Jack (the giant) and Lucy at her 2nd Birthday. And yes that is Isaac reading to Scooby Doo. He also likes to read to a group of Mickey Mouse stuffed animals and a Barney. :)

Some new cute kid pictures :)

Stressed

Surgery is next week and I'd be pretending if I were actually not freaking out about it this time around. I guess he is probably going to have the top part of the device switched during this lengthening and it could go from a 2 hour procedure to much longer - the surgeon won't know until the time of surgery and even then we are out in the waiting room left to wait until its all done with. Oh wait, did I mention that I'm horrible at waiting. Yeah patience is not my forte.

Isaac is doing great right now too and I just hope that the surgery doesn't set him back any. Yeah I know it will be ok. I guess I like to worry to keep myself busy. :)

We also have his PWS Clinic appointment on Friday and I'm actually excited for it so I can show him off. He's doing well, his weight is good and he's talking much more. I might get him to sing his ABC's or Happy Birthday or his new one, Rain Rain Go Away. :)

VEPTR lengthening scheduled/FOOD stuff

Isaac had his annual sleep study done Friday night after his ortho appointment in Columbus. We found out his next VEPTR lengthening will be March 15th - and it may or may not involve a replacement of the top device - he'll only find out once he's in there. His curve has increased around 10 degrees higher than it was after the lengthening last year. The orthopedic surgeon was more positive about VEPTR this time - he still crossed his fingers once while talking - but reiterated that its better than growth rods for Isaac.

We should have another endocrinology visit soon - and should find out the sleep study results. His weight is staying pretty steady around 39 lbs. His VEPTR device is kind of pulling against him height wise right now so we might not see any increase there until he's lengthened. :)

Things are going pretty well - he hasn't had any change in food related behavior in awhile. We have some basics established (no food in reach or in sight, we eat at the table, we limit his calories). He hasn't really woke up and said or signed eat like he did last year. He'll wake up and usually play for awhile and then I'll offer him his breakfast. He usually doesn't want or ask for food unless he sees it. If you bring out some food he'll come over and ask for some, but if we don't have anything out, he's not really asking. So that's been nice. Because we just try not to eat anything when we aren't at the table unless its ok for him to have some. I guess we always just think we are in the calm before the storm, waiting for all that to start. At least we feel prepared for it if that makes sense. Well enough rambling, off to play with the two other wild ones while Isaac is at preschool!