nicole's 8 month check up!

[jc3]

hi marylou
Of course i wouldn't take your correction in a wrong way! LOL. I'm glad you corrected me on that.
Will Jamie still be out of gym when school starts and still require text books for home?
Nicole will still be out of gym and still get the books for home. I was surprised at the 8 month check up i forgot to ask how many lbs she can carry now and when i called the nurse said it is still 10 lbs. I thought that was odd. Nicole will go on the bus this year. She is not happy, she loved be driven it gave her a little more time to sleep. I will be nervous though at first with those bumps! I think thought when it is really cold and snowy and the streets have ice on them i will drive her because i remember before her surgery she has slipped on the ice walking to the bus and i definitely wouldn't want that to happen.
I have 2 other children a boy who will be 11 and a girl 8, so far their backs are fine but so was nicole's at their age. I am praying they don't get scoliosis i can't imagine having to go through this again.
Jennifer

[Mary Lou]

Jennifer,

Yes, Jamie will be taking regular gym and carrying her books this year. At her six month check-up the doctor lifted her 5-10 pound weight restriction, but didn't really say how much she can lift/carry, but he did say she can carry her books. It seems odd that she can't carry her books. Are you sure the nurse knew for sure how long its been since surgery? I forget what your doctor's list said as far as weight restrictions at this point.

I know exactly what you mean about worrying about our other children. I was a nervous wreck when my other daughter went in for her 12 y.o. check-up in April, as Jamie was diagnosed at her 12 y.o. check-up. Thankfully our doctor keeps a close eye on her and since I now know what to look for, I too watch her closely.

Mary Lou

[jc3]

hi marylou,
i thought it was odd also that nicole could only carry 10 lbs still. I even said to the nurse she is 9 months and i said how long would the 10 lb restriction be for and she said until her next appointment, which isn't until January. I am going to call again when school starts. He did say she could play some gym, but she doesn't want to and i think i'd rather her not.
Jennifer

[Bill's mom]

Hi Jennifer,

I agree that the 10 pound restriction is odd. Bill's weight restrictions were increased rather quickly, I thought, and look at him now...so maybe it's not a bad thing to go slowly! I do know for sure that he went to 20 pounds within the first few months. It seems every doctor has a different plan.

Hope Nicole had a great time at Disney. I'm sure you're looking forward to her return.

Susan

[jc3]

hi bills mom
i think that the nurse may have made a mistake. I think he just forgot to tell us what the weight she can carry now and since he didn't say anything to us she is assuming that it is still 10 lbs, who knows?? He did lift most of her restrictions as for activity at our last appointment. I will ask again when i give them a call about getting extra books for home and a gym note. Is bill going to be playing gym??
Jennifer

[Bill's mom]

Hi Jennifer,

No. Assuming his foot ever gets better and he is out of his cast, he will return to marching band. If you do marching band for 4 years, you meet the PE requirement (and more as far as I'm concerned).

Today is his first day of school. I'll be really interested in knowing how he managed with the cast. Although he basically has no weight restrictions any more, I think I may try to get a second set of books for school again this year.

Susan

[lhaag]

Thanks so much for your words of advice and encouragement.......they do help A LOT!

Suanna, Sienna will be having her surgery at Shriners in Sacramento. They estimate it will be sometime around November.

Alison, I do agree with you and in fact am not at all concerned about surgically related problems down the road. Sienna is a strong and healthy kid and she/we have a lot of support. In the scope of things, these problems do not seem to hold the same magnitude as what we still have yet to face. I just wanted to make sure that I was not being naive and missing some kind of a "big concern." Hope that makes sense.

I am also not at all concerned with her post op (meaning once we are home). Not to say that I do not feel incredibly bad for her in having to face this and go through it and would much rather be able to do it for her, I just don't have any fear or anxiety, sympathy yes, but not fear! In January I will have my RN license which I credit for the feeling of peace that I have about the post op, in part anyway. I am not at all trying to suggest that an RN license is anything magical or special just that I have spent the last 4 years gaining knowledge about body systems, impacts on each other and have cared for some very sick patients of all ages with various conditions, ailments, and limitations. I understand the importance of pain control and how to assess for pain and what might work best on it, I am confident in moving a patient with limited mobility, and I also know what signs and symptoms to look out for that may be indicators of something not quite being right.

Sienna and I have a great relationship and she is not the kind of kid who would try to "get away with something" that she is not suppose to if she thought that nobody was looking or would find out. Lastly and most importantly, God has blessed me with a domineer of being calm and in control during stressful situations.

Now with all that being said, that part that is bringing me to my knees is this whole pre-op and actual surgery. The minute that I can see her and she knows her name and can wiggle all toes and fingers I will be fine, but until then it is truly a different story!

(I really hope that this did not offend or anger anyone as that was in no way my intention. I TOTALLY understand that we all react, act and deal with situations differently and there is no right or wrong way, no good or bad way. Honestly, in looking back at this post I can say that it was more me putting my feelings to paper then to send any kind of message. My sincerest apologies if I have upset anyone......Lisa)

[Alison]

Ooh congratulations on finishing your RN degree in January.....I'm a first year here and I know how much work you've got to put in for the degree.

One thing Sienna will probably face some time down the road post op is some disk degeneartion in the vertebrae below her fusion....it's basically because the ufused bit takes a lot of the load from the fused bit of the spine.

But with plenty of exercise, keeping the muscles in the back and abdomenn strong and support and a good level of fitness it's something you can delay for a long while. As my Physio put it one day.....do your exercises Alison...you've got another 100 years to get out of that back yet :-)

I think the day you child's in surgery must be the hardest one for a parent to have to deal with....I know my Mum and Dad still went to work that day....they had to keep busy and couldn't cope with pacing around a waiting room all day.

Alison

[Mary Lou]

Jennifer,

Are you really, really excited that Nicole is coming home today? lol I'm sure you'll be glad to see her. I know I would be!!!

Now that you and Susan have mentioned possibly getting extra books for home, you got me thinking, hmmmm, maybe I should do the same for Jamie. I won't ask right away, I think I'll let her try it first because lately I've been told I'm too overprotective of my kids! How can we NOT be overprotective of our kids, especially the ones who have had surgery?! As for gym class, most of what our high school does with the girls is a lot of yoga and pilates which will both be great for Jamie.

Jamie was totally ticked off yesterday. We got a letter in the mail changing her next appointment from early December to early January. This is her 1 year check-up and she is looking forward to all of her restrictions being lifted. What also upset her was the fact that we made the Dec. appointment six months in advance so it would be after school and now the new appointment time means she will have to get out of school early. I will call today and try to change the appointment.

Mary Lou

[jc3]

hi marylou
Yes i am so excited for nicole to come home today. Her flight doesn't get into ny until 8 though so i have all day to wait. She has never been away for more then a night or two, so we are really looking forward to her coming home.
Everyone says i am to "overprotective" also, but i think we have to be. I read too many stories about these rods breaking because they aren't fusing and that's my fear that something will wreck this fusion and a rod breaking. I don't know why this happens to some people. So i'm not taking any chances.
That is great that gym for the girls is yoga and pilates. Here nicole would have to play touch football, soccer, volleyball and i don't think she is ready for that. I don't see me ever wanting her to do any of that LOL.
I don't blame Jamie for not wanting to wait another month for her appointment.
Jennifer