5 More Weeks !!!!!

We are all getting excited for our upcoming Disney trip. We are counting down the days. I made a calendar for the boys to cross off the days. I don’t know what we are down to because I keep forgetting to have them do it (they remind me after they are in bed). Five weeks from right now we will be there!!!


We’ve recorded a bunch of Disney stuff for the boys to watch. We’ve never really had them watch much Disney stuff because all the kid shows are on during the day, and the evening is for the bigger kids that I don’t want them watching yet. But they’ve started watching the Mickey Mouse Club (I thing is super cheesy and they are too old for but whatever). We recorded Aladdin, and they LOVED the ‘big blue guy’. They thought he was the funniest thing. We recorded Peter Pan but it wasn’t the cartoon version. They were a little scared but watched it anyways. They’ve watched Dumbo and I think Snow White at my parents house. So now they should have a pretty good idea of who the characters are when we get there.

Paul and I have been sitting down after the boys go to bed, with the computer and a book that Rhonda let us borrow (Disney with Kids 2010) trying to plan our days. We know we get a three day park hopper pass, a two day to Universal and something else but there isn’t anything at Universal we want to do, so we are going to see if they will let us have another day at the Magic Kingdom. And we are going to see if we can get a pass to Kennedy Space Center. They say they have them on a first come first served basis.

I’ve been asking our wish coordinator TONS of questions. I know we are flying out of Flint at 7am on November 4th with a two hour layover in Detroit, then on to Orlando (what’s the point in the layover I don’t know). I know we are getting a limo ride to Flint!!! We will have a rental car while in Florida. We will be coming back on the 10th, flying from Orlando to Atlanta (I think) then on to Flint where we will have a limo ride home I believe. We will be giving back late though.

It’s getting more and more exciting as we show the boys more Disney stuff. We are preparing them for it as best as we can. We see something they might see, we remind them off it. We even see an airplane in the sky and we mention “hey that’s what we are going to be doing in five weeks”. But seeing the rides on the internet, making a few dinner reservations is getting Paul and I more excited. I can hardly wait for five weeks to be up. Now I am just waiting for weather reports so I know what to pack.

Dr. Bove

Dr. Bove is David's Surgeon.  As long as he is still alive and performing surgery he is the only one that will work on David's heart, unless... David ever needs a heart transplant.

Dr. Bove has a webpage... it's new.  I've been waiting for it and as I was moving my favorites from my old laptop to my brand new one I found it was up and running so I decided to share it.

http://www.boveprofessorship.org/

Please take a moment to read about this wonderful man who to us ranks right up there with God himself.

Oh and I have allowed anyone to comment on my blog, so please comment here.

Make-A-Wish

So... I am going to start blogging David's Make-A-Wish trip.  I've been e-mailing the coordinator (Merry is her name) about the status since February was when we had the first meeting.  It's not September and we were getting no where.  I don't want to push something that we are getting for free but not knowing anything was driving us insane.

We found out we were basically waiting on the cardiologist to give David the ok to go, meaning he's healthy enough to go.  I'm  now thinking they never got it.  Well Merry re-sent is and started asking us about dates, first we said the last week September because the boys would be off school that week.  But we knew that was to soon, so then we said November.  So the first week of November the 4th - 10th.  She had not gotten the ok back from the doctor but she was going to reserve us a spot at Give Kids the World. www.givekidstheworld.org

I did call the cardiologist office yesterday to confirm they got it and they promised me that Dr. Goble would fill it out and return it next week!!!

So now we get excited!!!

So 9 weeks from tomorrow we are leaving on a jet plane to Disney!!!

Six Years

It is hard to believe my boys are six years old already.

How the hell did that happen?

Six years ago right now I was sitting in the ICU next to David's bed.  He was two days out of his first open heart surgery.  I was SCARED.  I wasn't so much worried about having twins, it was David's heart defects that had me freaked out.  This is something I've never dealt with before.  Everyone has a perfect baby.  I didn't even know this stuff existed.  We have learned so much since then.  We have come so far.

First grade already?

Wow... Just... Wow...

That's all I can really say.

How it's going...

So update should happen right?


First Lucy… She’s doing better. Had meningitis I think. Well it kicked her butt. I’m still not 100% sure if her cancer is back or not. I don’t ‘think’ so. But I did find out she was almost brain dead. I think the meningitis gave her a false cancer reading. I’m relieved she’s doing better but she still has a long way to go. She’s in rehab learning to do everything again, and gaining strength. Lucy has an older sister Ella, who is very close to her sister and then a little brother Jack who is too young to understand but misses his Mommy. Kate is Mom, she spends 99% of her time with Lucy. She inspires me, I have no idea how she stays so strong.

Then Owen… the link to their journal is on here somewhere. I love Owen. He’s tugging at me too because he’s so stinking cute. He’s looking toward a heart transplant. This one is heavy on my heart because he’s a heart baby like David. Owen is an awesome kid though and the bond he has with his older sister is AMAZING. I mean just WOW. Owen’s mom inspires me too. All the stuff Owen needs to survive, he’s on oxygen 24/7. She stays strong.

Both families are so far away. Lucy is in Tennessee around St. Jude I think. Owen is in Arizona I think. If I had my choice to meet anyone it would be Owen. I check my Journal’s every day for updates on these two families.

Back on Michigan ground though…

David is doing AWESOME. There is still a 1mm leak, it will be monitored with echo’s every three months. In the meantime let him be a normal boy so that’s what we are doing. We also found out that they are moving him to first grade! On his ADD meds when they tested at the end of the school year he tested above average in math and reading. One of them he was only one point below Matthew, and two below in the other. So WOW!!! Where has he been hiding that? They left the final decision up to us and we decided to go ahead and let him go to first and see what happens.

With summer here we’ve done one camping trip without David. Since Paul and I spent so much time already this year with David because of this two surgeries my Mom suggested we leave David with her and only take Matthew camping so he could have some alone time with us. Matthew made a comment to me that hurt, I had just taken the last serri strips off David’s chest and Matthew says “mommy do you still love me now that David’s heart is fixed?”. Why would he think that? So that sealed the deal on a Matthew only camping trip. I think he’s feeling much better now.

We have another camping trip the weekend after July 4th. My parents and David are going with is on this one. I’m excited sorta… I wish we had a camper instead of a tent but when hauling the boat it’s kinda hard to haul a camper too.