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!