I've heard from Susannajon

[nicoles mom]

hi mary lu and susanna
I guess I will ask the doctor this but just wanding if she does get her period this would be her first time. Does it mean she will have it from than on. Or is it because of her age and having signs of getting it any day.
Theresa
ps I order the chair I hope see likes it.

[susannajon]

Hi Theresa,

Periods can be really irregular in young girls, so there's no telling whether if she gets in in the hospital it will be regular after that. I hope she's spared, but just be sure to talk it over with her so she's prepared. Otherwise she might be very frightened if she sees blood. She might think there's something wrong, or her incision has opened or something. It's a little scary for most kids anyway without being in the hospital.

The nurses made us a nice heating pad that could be popped in the micro, so keep that in mind if she gets crampy.

Susanna

[nicoles mom]

thanks susanna
She knows all about it. shes the only one left to get it. All her friends have started they periods. She feels left out I told her it will happen. She thinks the day of surgery it will come so thank god shes perpared for that. Doesn't mean she'll be happy about it but one never knows.
Theresa

[susannajon]

Hey, as long as she knows what it is she'll probably be excited, since she's the last one to get it. Maybe she'll think of it as one good thing to come out of the whole surgery experience. My best friend was 17 before she got it for the first time, and she was starting to think it would never happen!

Susanna

[jc3]

hi everyone
i was trying to get on the site this morning and it was down for some reason, but i am glad it is working now.
Susanna,
how is grace doing?? I can't believe it's two weeks already. It sounds like she is doing really good.
Everyone told me that nicole would probably get her period after the surgery and i was shocked that she didn't at all. I think most kids do.
Get this - Nicole asked me tonight if i could call the dr. tomorrow because she wants to go bowling tomorrow night w/her friends. She said the dr. said she could hold 10 lbs. Even if the dr. said she could i still do not want her to bowl! I am not taking any chances with anything.
Oh, how is that memory foam i want to get that for nicole. She still doesn't like to sleep in her bed, she says it's too hard.
jennifer

[Risa]

Dear Susannajon,
I'm new at this site just wanted to say I'm glad your daughter is doing well.
God Bless Risa

[susannajon]

Hi Risa, Thank you so much for your kind words!

Hi Jennifer, Memory foam is awesome and I bet a nice thick topper will really help Nicole get back in her own bed. My daughter says her bed felt "too flat" before we put the topper on the bed. She seems to be resting much more comfortably with it.

As far as the bowling, there's no way I'd let her bowl. Too much bending and twisting with a heavy weight in her hands. Maybe she can go along as a cheerleader?

Susanna

[Mary Lou]

Jennifer,

I know where you are coming from completely with the bowling issue! As you know Jamie is one month behind Nicole (and much more restricted by her doctor) and she is really minding her restrictions right now and we are stuck with them until at least June! She would like to ride her bike (we assume she isn't allowed) but I would worry that she would hit a patch of stones left over from the last snow we had and slip and then who knows. Do you think Nicole would go along and just hang out with her friends? I'm finding that Jamie would rather stay home than go along and just watch.

Have you noticed that Nicole has sort of "outgrown" some of her friends since her surgery? Jamie's maturity level has sky-rocketed since her diagnosis and surgery, that she now finds her friends are very trivial. She still hangs out with the same friends, but she just doesn't relate to them very well anymore. She comes home from school and says about the typical teen things they complain about and she just shakes her head, like, if only they had a clue what really is important in life.

Mary Lou

[jc3]

hi susanna
there was no way i was letting nicole bowl even if the dr said she could, but i didn't even call him and ask. She doesn't mind not bowling though, she'll just hang out. I have been in every store looking for the memory foam and cannot find it in a twin size, everywhere only has king and queen. I am going to have to order it online. Where did you get yours? Was it online? What do you do for grace's check ups? Do you have to go all the way back to the city?
Jennifer

[jc3]

hi marylou
I definitely agree that they do mature after what they've been through and their friends just don't understand what they've really been through. Nicole doesn't mind about not bowling, she'll go anyway and just hang out. Maybe Jamie feels like she'd rather stay home if it is something that she can't do that her friends can do. I can understand that. About their restrictions, I can't imagine not being a wreck after that 1 year mark when they are allowed basically to do anything they want. When she allowed to play gym next year i will be scared that she will get hit in the back with a ball or something, especially i hear alot of these kids play basketball, what if they got hit in the back with a basketball. I'm sure summer will be hard with playing around in the pool and stuff. I'll be scared she'll get kicked in the back or someone will jump in the pool on her back. The worry never ends. Some of these kids who had surgery drive, forget it i'd be so scared of an accident.
jennifer

[susannajon]

Memory Foam Mattress

Hi Jennifer,

I got ours at:

http://www.comfortchannel.com/prod.itml/icOid/900,

This place is totally awesome... good prices, free shipping, and great customer service. We've bought a bunch of stuff from them.

Susanna

[susannajon]

Daughter is on the mend

Hi everyone, just thought I'd post a brief update. My daughter is 19 days post-op. She is still experiencing lots of pain, but it gets better every day. I have noticed that she often will have a very good day followed by a not so good day. She needs pain meds every 4 hours around the clock. She is now able to tolerate about two hours sitting up in a chair, and is able to take brief walks. She spends most of her day in the recliner. Her concentration is better, and she is reading, playing video games, and doing a little homework. The steristrips are off and her incision looks very good. She doesn't have some of the sensitivity issues along the incision that some of the other kids have suffered from. She does have some areas that are numb, such as next to her incision, as well as a spot at the base of her spine, and one just below her belly button. She has one spot on her leg that concerns me a little, because she says she feels a little pain and numbness, but it appears to be fading. Her ribs are bothering her more than anything else. The shoulder and neck pain that was giving her fits the first couple of weeks seems to have pretty much gone away. All in all, she's doing great!

[Mary Lou]

Susanna,

I was just thinking about sending you an e-mail. Sounds like everything is going according to schedule with your daughter. I'm so glad the steri-strips are gone. They were a big issue with Jamie-I had to remove them because they were still on at about seven weeks! Since the incision is well healed, has she taken a shower yet? If so, how did it go? The first few are the hardest, but like everything thing else, it gets better with time. As for her leg, Jamie had some issues with her left thigh area for a while, but it has gone away. Tell her to keep up the good work!

Mary Lou

P.S. How are you holding up?

[jc3]

hi susanna
sounds like you guys are doing good. As for the leg numbness i don't think it's anything to be concerned about. Nicole at the beginning was complaining alot that one arm felt like it was asleep alot and i was worried alittle about it, but it eventually went away.
It is good that her steri strips are off, nicoles were still on when we went for our 3 1/2 week check up, except for some that fell off and they took them off at the appointment, she wasn't happy. I think when they are about 3 -
3 1/2 weeks they make a big turnaround.
Keep updating us
Jennifer

[susannajon]

Hi Jennifer & Mary Lou,

Dr. Boachie wanted the steri-strips changed before we left the hospital, so she took a nice long shower while we were still there, and the nurse changed the steri-strips. I watched VERY carefully, so when it was my turn, I would know what to do.

My daughter hated the dangling steri-strips more than she feared the pain of pulling them off. Plus, she'd experienced them being taken off once already. She took her first shower at home about day two, and again every other day, and about day 8, she'd had enough. They were itching and pulling, and she wanted them off. We took a nice long shower, and rubbed some Neutrogena shower oil into the old steri-strips. We pulled them off in the shower, and then very gently rubbed the incision with some Dove shower wash and a scrubby. The combination of the oil followed by the shower scrub took off a lot of the old adhesive, and most of the remaining scabs, and she looked and felt so much better.

We just took it very slow and gentle, and she took her pain meds right before we got in the shower. She sat in her shower chair, and we made sure the steri-strips were totally saturated before we started. After the shower, I just put fresh steri-strips over the incision for the chest tube, because that area still looked pretty raw.

How am I doing? I am completely exhausted and sleep deprived, but I am so much stronger emotionally because I have had this wonderful bonding experience with my daughter. It has been such a good opportunity for us to reconnect. I am also so relieved that the surgery is over and she's doing exactly what she should be doing as far as the healing process.

Thanks again to both of you for providing support!