Trip to Columbia

[randsean]

Howdy,
We are making our trip to Columbia in New York on Dec 13th. Since our last visit, the hospital became in-network. It was truely amazing to call and make an appointment, without the need for prior authorization.

We are going to be meeting with the Genetic Dr. who has located another young man (2 1/2) that has the same mutation as Tyler. (I have the details if anyone wants to know the mutation).

We are also going to meet with the Cardiologist. Tyler has been off all heart meds, but has been taking a lot of Asthma meds.

Sean

[Pam Alexson]

Should be a most enlightening visit for you all. Let us know how it goes.

Pam

[Linda]

Sean - Best wishes on the visit - we'll be watching for an update - Linda

[randsean]

Tyler loved New York! We went down the night before and stayed at Park Central (58 St & Seventh Ave). We had a "beautiful view" of Hooters restaurant from our hotel, :-) The weather was terrific, so we walked to see the Tree and Ice Skaters. He got to go to FAO Schwarz toy store, too.

We saw both Dr. Chung and Dr. Hsu, and he had an Echo and EKG. All of his numbers have stayed the same, with no outflow gradient or obstruction (good news). Dr. Hsu expects he will have a very uneventful childhood, with few limitations. His heart is quite thick, but he has no rhythm problems, or other concerns.

Happy Holidays,

Sean

[Reenie]

I'm glad to hear he got a good checkup. :)

Reenie

[Alison Whybro]

Hi Sean, glad that you have had Tyler checked and that the news was quite positive - what better Christmas present can you get than that!

New York sounds wonderful and I am TOTALLY jealous! Although I have been to New York briefly (14 years ago!!) I have always dreamed of being there at Christmas and seeing the tree and skaters etc. Over here in NZ, the sun is shining and we are having barbaques - it's not quite the same as a Northern Hemisphere Christmas! We put our tree up yesterday and the children have finished school this week for the summer holidays. They are very excited about Christmas. Our 9 year old daughter has HCM and had a mitral valve repair and myectomy a couple of months ago. Having her back on her feet and smiling again will make our Christmas this year.

All the best with your little boy and keep us updated on his progress!

Kind regards,
Alison
Auckland, New Zealand

[Pam Alexson]

Sean,

Great news and it truly is the best christmas present.

Hey Alison, My son will be heading to university of Adelaid, Australia, Feb. 6 for 5 months, he is looking forward to another summer ; even though it is unseasonably warm here this year. When he comes back it will be summer here again.

Pam