Re: I am a wreck-sorry to rant~Joan

[Guest guest]

Thanks for your insight . I may have to speak to my Dr next time about all of this, but he isn't very forthcoming as you know. Joanmom to Hayden 32nd CastTreated at ish Rite Hospital Dallas, TX

To: infantile_scoliosis Sent: Thu, December 17, 2009 6:43:14 PMSubject: Re: I am a wreck-sorry to rant~Joan

Hi Joan,

I guess I didn't realize that Hayden has a Syrinx also...maybe I had heard that at some point. Yes, very interesting.

Our Doc and PA have always told us that you have to address the rotation before the curve will resolve as the rotation will cause the curve to get worse. So maybe if Haydens rotation improved a bunch this time, that's great news and just maybe his curve will improve next time.

Just my thoughts.

From: NIck Guthe <nickgutheyahoo (DOT) com>Subject: [infantile_scoliosi s] I am a wreck- sorry to rantTo: infantile_scoliosis @yahoogroups. comDate: Wednesday, December 16, 2009, 4:50 PM

Hi,

Well, it's been only about 24 hours since we left the hospital yesterday, and I am a wreck emotionally. I am so appreciative of all of your messages and supportive emails, but I am so sad right now. I know I have to grieve this new information, not just the number that went up and not down, but the fact that our Doc said that Bex might likely be in some kind of brace until he is fully grown. We have a very strong willed boy, and he is not going to like it one bit. Nick did not have his last growth spurt until he was 15-16 years old!!! If Bex is like his Dad, we could have fourteen more years of casts and braces to go. My heart is breaking for my boy going through that. My heart is breaking.

We had to go to the airport today and get on a plane, and I tried not to cry, until we got into the cab in L.A. and I cried the whole ride home. I think maybe I have been too optimistic. I get my hopes up, I keep thinking Bex will be the exception. I get so full of anxiety the whole week before travelling. It is such a build up, and I feel like I just pushed myself off a cliff.. I am so sorry to be so pessimistic and ungrateful sounding, because I am so grateful for all of the positives, and you cannot go to a Shriners Hospital and not see so many kids with very difficult conditions, and feel lucky for what you have.

I still think we have the greatest doctor. We love our hospital and the whole staff, they are so wonderful to us. It is just that it is one week before we are supposed to travel to NY to have a happy Christmas with my family, and they will not really understand what it is like to go through this. They are loving and supportive, but now I just don't want to go. I don't have time to grieve this before then.

I ordered Christmas cards weeks ago with a positive message about Bex's health on them. I feel like throwing them away. I know I need to pull it together. It's just that the wound is still fresh. And we have to go back in 10 weeks again for another cast and an MRI for Bex's spinal cyst (syrinx). I just feel like I can't handle it. Just like in the beginning, with the diagnosis. I feel like a terrible mother because I am so depressed. Maybe I need to take anti-depressants. I can't stop eating, it feels like I am going down for the count and I can't get back up. I can't stop crying. I feel so helpless. My heart is so heavy. I'm so sorry, I am so sorry that I am not stronger. Heidi, Bexon's Mama, (2 years old, in 5th cast from Salt Lake City Shriners)