I just realized I haven't updated since we went to Dallas for his 6 month check-up! So, the Holter didn't show anything significant or alarming. So that's good. However, he's ranging from 44 to 196 so it's a little too low and a little too high. But apparently, nothing alarming until he's in the 30's for extended periods of time.
As far as the epidodes go, he is concerned about those. Could be a fluke deal, could be something real. If he continues to have them, then he wants to do an event recorder for a few weeks. He luckily hasn't had any since before we went, so we're keeping our fingers crossed! He also has been complaining of his "gut" hurting, so he checked out his liver pretty good. Because of the type of surgeries he's had (the Glenn and Fontan) and the circulation he now has, he is at risk for liver problems. So, he wants to make sure that his liver is checked if he keeps complaining of this.
Something we discussed in detail was some recent studies of neurological outcomes in children with CHD. They are starting to see a very high percentage (75%) of complex CHD children like Kaston (who is hypoplastic or single ventricle) have more than just the health issues to deal with. Neurologically speaking they are seeing more and more issues with hyperactivity, academic achievement, language development, visual construction, attention, executive functioning, fine & gross motor skills and psychosocial maladjustment. Kaston has had delays or problems in ALL of these issues but has never received any type of therapy, EVER! Nine years ago, the goal was to just keep him alive. Now that these kids are being studied more and a larger amount are living longer, they are starting to see these other problems within this older population and have started implementing all kinds of therapy earlier on in life.
SO...what does that all mean? He wants Kaston to be seen by a developmental psychologist to evaluate him to see if there's any therapy he could benefit from to help him with these areas. Now, we homeschool, therefore we are able to already concentrate on these areas and have molded and built a curriculum to help him learn at his best potential. He also attends karate 2 times a week where they learn how to use their bodies, he has to learn to concentrate and be in control of his body and motions, he has to learn sequences of movements (he is in black belt club so he has to learn katas with weapons like nun-chuks, bo-staff, and camas and it is memorizing movements - 20 or more in sequence). So, really, we aren't sure that we want to go as far as getting him evaluated, labeling him, and getting him therapy that little is known about for these issues. #1 We already know what areas he is lacking in #2 The school (me & my husband!) has already been notified of these problem areas (most people's main concern) #3 We already are utilizing programs to help him with the problematic areas (through karate). We really feel like this is probably the very best thing we can do for him! And besides that, most insurance companies have a problem paying for any type of alternative therapy anyways (we did a $3,000 vision therapy program that really didn't help him any).
So, with all that said, we go back to Dallas in another 6 months and just keep monitoring his heart rate and episodes as they occur. It's the waiting game...as it's been since he was born, almost 10 years ago!
Which brings us to his surprise party! I have only planned the date, time and place! I have no idea how I'm going to decorate or what kind of cake to get or a theme or anything! And we're only 18 days away! I at least got the invitation emailed out and am already getting confirmations, and I think there will be alot of people coming. So that's going to be exciting for him. I need to get with our Wish Grantor and figure out what she is wanting to do as well.
As far as the trip is concerned...I'm a little freaked out about getting there so stinking late! I think my best bet is to contact GKTW once we get our packet and make arrangements with them to do a late night impromptu orientation? We seriously, won't be getting to the village until possibly 11:00 or 12:00 at night because our flight was booked so late. And I am seriously considering rearranging our entire itinerary so that we just hang out at the village the next day.
We have been doing the countdown chain and the kids have been loving it!Every 5 days they get a gift. And remember, my kids are almost 10 & 13, so their gifts are very different from what most do! So far they have gotten the Disney Cake pops, M&M tubes full of quarters and pennies for the penny machines, 20 Disney trading pins each, an iTunes gift card for new music for the flights with a Disney toothbrush and Disney key chain...and still to go is a bucket full of candy, gum, Disney candy, Disney spinners, etc. / Disney pajamas for Mayor Clayton's tuck-in visit! / Disney cup with a $25 Disney gift card to spend as they choose at Disney World / and the best one will be an iPad! I have been saving up money for a long time and have really been wanting to get one for them to use for school (and for travelling too!) and I figured it would be a great thing to get them (us) for this trip!
Gonna go play Connect Four with the boy, so I'd better get off here for now! Thanks for coming along!
Glad you had a great time. 
