Appt at CHOP

[MATJESNIC]

Nicole has an appt. on Friday, July 6th at CHOP with Dr. Dormans. I called every day for the past few days and finally, something!!! I believe now that her surgery will not be until August or Sept. That would be fine with me. There are some advantages to waiting, including letting Nicole have a fun summer.

[Carmell]

Cool! Thanks for the update, Melissa. Glad to hear CHOP is getting her in in a timely manner. I'm sure Dr. Dromans will be able to give you even more insight to this and will help you make the right decisions for her. We'll be anxious to hear how things go.

[MATJESNIC]

Thanks, Carmell,

I am so sorry that I have been so self-absorbed and have not asked you about your son and your family. You are not here just to support, but to get support, as well. How is everything and what is new?

[MATJESNIC]

We have a surgery date

It looks like Nicole's surgery will be Sept. 12.

[Carmell]

Congrats on a date. Sometimes having a date helps with the "closure" feeling. Gotta have something to plan for. Will still be anxious to hear what Dr. Dormans says on the 6th.

Thanks for asking about Braydon. He's doing well since surgery on May 31 (his 12th bday). He's more sore this time than usual after expansion surgery. We're assuming its because his spine and ribs are very stiff and the ortho was able to do lots of stretching to get a good correction/expansion. The cartilage and sternum are even sore/inflamed because of this. He's quickly learning how much he can push himself without overdoing it physically. My 16yr old had sinus surgery last week (septoplasty and roto-rootering) so he's been sore too. They are taking care of each other at home. I just need a good nap - that's all.

I'll be sending my best wishes (and gentle hugs) to you both on Sept. 12. It will be here before you know it. Enjoy the summer and remember to take care of yourself too, mom. You'll get into this later, but remember to keep hydrated at the hospital - lots of water for you, lotion, etc. to stay hydrated. I keep a water bottle or cup in the room at all times so I don't get dehydrated. Hospitals are very dry places.

Take care and thanks again for the update.

[laurieg6]

Hi Melissa & Carmell,

I'm very happy to hear that Braydon is now doing well after his surgery. I had been concerned about him since I read he may have had more difficulty than usual after the expansion surgery. It is always esp. good to hear about successful surgeries with kids recovering quickly & adapting to their "new" bodies. Braydon seems like such a trooper. He is the same age as my son so I feel inspired & relieved when I read about what he's been through & how well he does with all of it.

Melissa, I bet it's a relief to have a surgery date. I felt somewhat better after (finally) making a decision about which surgeon to use & solidifying the surgery date. You have been so positive about the surgery lately & I really like reading your frequent updates. They help me to realize that my son, too, will be fine & will be the same as before, just with a less flexible, stiffer spine. Nicole's surgery date is exactly 2 mos. after Alexander's so I will keep you updated. He's feeling fine about it, although he is a little nervous. He really just wants to get it over with & move on. He loves school so I really had to make sure he didn't have to miss any. But at least he will have two weeks of summer after school lets out at the end of June.

Thanks for reading/listening to this. I am so glad I found this supportive forum.

[MATJESNIC]

Carmell,

I am glad that Braydon is doing well. Your family is such an inspiration to us. When this is the first time of going through a medical situation, it is very difficult. It is the first time for us.

Laurie,

I noticed that Nicole's date was exactly two months after your son's. I can't wait until we all have these surgeries behind us. I am so glad we are all here to support each other. I honestly could not get through this without all this great support.

[laurieg6]

I feel the same way about the support. It's really nice knowing that there are people who can empathize with how I'm feeling & might have similar thoughts, concerns & worries about their children.

Right now I'm trying to figure out a good time for Alexander to donate blood. He's only about 90 pounds but he's supposed to donate one unit just in case they need it for him during his surgery. I was told that donating could also increase the risk of needing the blood. So I have to work out a time that won't intrude upon school, martial arts or any social events he's going to, yet is far enough away from the surgery so he can replenish his iron, red blood cells, etc. I guess it's just one more detail to work out & is a relatively minor issue in the scheme of this whole thing....

[MATJESNIC]

At Shriner's, we were told it has to be within 30 days of the surgery.

[cyprusmom]

Dear Melissa,
I found your update. Wow, you have "the date". That is the one moment I remember crying when I got the phone call from the hospital. It was actually a big relief and I am sure you feel that way too.
Now, you have the July 6th appointment with your doctor. Will that be the first time you see him? And it is so great that the hospital is so close to you.
Yes, let Nicole have a great fun summer, she will have the winter to recover and by Spring time she will ready for another fun filled summer!
I believe my daughter e-mailed her a few days ago, if she wants to ask her anything please tell her to feel free to do so. Anastasia is doing great she is turning 13 tommorrow , doing great at school, having fun, swimming, and looking forward to starting dance lessons after the summer.....I can't believe almost a year is gone by since her surgery.
About donating blood, she had a pint taken like 4-5 weeks before surgery and then attempted for another one 2 weeks prior but she had the sniffles and didn't let her do it. She didn't need any blood though.
Did you find out what your doctor will use, stainless or aluminum?
Thinking of you always,
Pola

[gerbo]

Pola; great to hear your daughter is doing so well. Does she notices any restrictions?

Melissa; things are moving now, that is really good to hear. are you able to feel quite relaxed or are you still all tense. are you managing to sleep?

as always, thinking of you and sending lots of transatlantic good wishes

gerbo

[MATJESNIC]

Thanks for the good wishes, Pola and Gerbo.

We have not met with the surgeon yet, but were allowed to put ourselves on the schedule. I don't know the details of the surgery yet. But it is such a small world. Nicole met a new friend this year in Middle School and last year she had a tumor in her arm and Dr. Dormans was one of only a handful in the country who could perform the procedure to save her arm. It involved taking the bone out. Fifteen years ago she would have lost her arm.

Although it is a different surgery, the recovery time was similar. I am glad that Nicole has this friend for comfort. I went with Dr. Dormans not even knowing about this. Tumors and spines are listed as his specialties.

I go through ups and downs about the surgery. I don't think about it constantly. Sometimes I just think about it just lightly and other times I let myself get too involved in the thinking. I have good and bad days. I cry off and on. We are having a really big party as a send-off this summer. She already has over 50 kids on her list. She is so excited for that. She is also so happy to miss school. She was never that type, too much anxiety. But she really doesn't like Middle School and she is happy she will have a homebound for a while.

So glad Anastasia is doing great. Gerbo, how is your daughter?

[gerbo]

l is fine and very happy that she got selected following auditions for the National Youth Ballet ( http://www.nyb.org.uk/ ), quite a prestitious company drawing from talented dancers from all over the UK for a once/ year serie of performances.

parents are still chronic nervous wrecks, remaining anxious about "doing the best thing" and making sure "we are doing all we can", without at the same time turning L (and ourselves) absolutely neurotic. She looks "stable" though, but we are already getting more anxious about x rays next month.......

[MATJESNIC]

Gerbo,

That is AWESOME!!!!!! I am so happy for her and your entire family!!!!