I have so much to post and so little time!

Our flights home today were pushed back due to the weather. We are scheduled to fly home tomorrow, but I'm not holding my breath as it appears there is more bad weather is expected closer to home.

The verdict: NJ will be having surgery for his Chiari.

We fell in love with the Doctor. He is certaily unlike any other Neurosugeon we've ever met! So down to earth and straightforward. He lacked the egotistical/God-like attitude often held by surgeons. He was amazing with NJ and made him feel so comfortable. We made the right choice to come here to Chicago and we all (even NJ) feel comfortable moving forward with surgery.

I'm posting from the Ronald McDonald House. (Which is absolutely beautiful by the way!) We are getting ready to visit the Shedd Aquarium with a few other families staying here at the RMD house. I told NJ after several days of appoitments and stress, he deserved to go do something FUN.

Edited Friday Evening:

Hmmm, where do I start? I guess from the beginning!

Tuesday we arrived via Angel Flights. The flights were pretty uneventful. It was quite the experience riding in those little itty bitty planes though!! I was impressed that neither NJ or myself lost our stomachs. I felt like a sardine squished up in a tin can. All of the pilots were very nice though, and the 3rd one even drove us directly to the Ronald McDonald House himself once the plane landed!

Once at the RMDH we checked in and were given the grand tour. And I mean GRAND tour. The house is spectacular. It's huge. The Kitchen is to die for. There is a computer room, several living rooms and playrooms. The main playroom is decorated with Pottery Barn Kids furnishings and filled with wonderful toys for all ages. The Princess would have a blast in there! Our room is nicer than many hotels I've stayed at. In fact it resembles an upscale room at Hotel Monaco that hubby and I stayed at once in Denver. If I ever win the lottery, let me just say that I know without hesitation what organization I will be donating too.... Ronald McDonald House Charities. Hands down. I've now seen first hand how important this kind of place is for families that must travel for Medical care. Nearly every night (and sometimes lunch time too) people come in and volunteer to cook for the families staying here. Not only does it help the pocket books of those families so they don't have to grab take out, but it provides a healthy home-cooked meal when they otherwise would not have one. Tonight, a College Fraternity came in and cooked Dinner for all of us. It was great seeing all the College students in the kithen making dinner together! The House Manager and staff have all been wonderful. Making sure we had everything we needed at all times. From the time we arrived, we've felt so comfortable here in Chicago all because of the RMDH and the other parents staying here.

I've been SO LUCKY to meet several other Chiari parents over the last few days. And while our stories are as different as the places we come from, they have all been so supportive and wonderful! I know NJ has really benefitted from meeting the other children who've already had surgery and seen first hand what he is to experience.

Well, I'll continue later this weekend from home. I've got to start packing!

3 messages:

  1. Cole Twins said...

    Kristen and N :

    It was so fun meeting you. I am so glad that you liked Dr. F. and that you are please with everything. Have you scheduled a surgery date yet? I am dying to hear more. If you get a chance email me. I am wondering how much of a difference there was btwn then and now.

    Riley say's HI and wants to see you guys again.

    Take things easy. I know it's a lot to swallow right now, but like you said, you are doing the right thing!Dr. f is such a great guy! See why I am having such an issue with the "sponge" ordeal?

    Have a great time at the SHEDD. We went there on our way home as well! Lots of fun!

    Hope you get home soon!  

  2. Brenda said...

    I am glad to read that things went well for NJ! and that you had a good stay concidering the reason you guys were there. Hoping you get home tomorrow too. Keeping fingers crossed for good weather for you guys.  

  3. The Bus Driver said...

    Hi Guys! It was so awesome meeting you both. NJ is a great kid and seemed to take everything in stride. Let us know when they schedule surgery.

    Take it easy!

    Michelle, Gabe and the rest of the crew =)  


 

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