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Nikki, unfortunately, Dawn and I are still waiting word for our kids' surgery dates. We are concerned that they may have to miss the beginning of school and have trouble catching up. My daughter and I had decided several months ago to schedule surgery for early summer, so she could return to basketball that winter. Our surgeon plans to restrict her for a full year from sports, so that shoots that plan. Also, by the time we got in line for surgery at Shriners, they are filled until at lest early July. So much for scheduling around things in our case. It does look like she will get to complete her trip to Puerto Rico, though, which the doctor said she shouldn't do due to needing surgery BEFORE the trip. Since he didn't know his own schedule was booked through June already at the time, we spent time convincing ourselves and Erica that it was best to have surgery instead of the trip. Then, we found out he was booked all that time. Now I am thankful to save myself $7,000, about, and use the very favorable facilities at Shriners, not to mention the 2 good surgeons there. I tolerate the other inconveniences. You're right about returning to activities. Kris
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I took my whole family to the YMCA last Saturday for a belay class for the climbing wall. The instructor ended up giving us a family class for a good rate ($25) for the 5 of us, instead of $8 apiece. Now we all know how to belay for other climbers, meaning hold the safety rope as others climb the wall. This activity uses the arms and legs alot, and Erica loves to do it, so I am encouraging this activity as often as I can get her there between now and surgery, with hopes to keep/get her arms and legs in good shape to push off that bed and walk around after surgery. I notice David Wolpert suggests not to strengthen the back muscles before surgery afterall, so I decided not to encourage her to go without her brace afterall. She did remove her brace for the climbing this time, as she can reach better without her brace. After we were done, she begged to go straight home so she could get her brace back on to stop her back from hurting. Thankful I don't have to encourage her to wear the brace!!! This belay class also made it so I can drop off any of my kids (age 13, 14, 14-Erica has a twin) at the WMCA and allow them to climb even if the YMCA belayer is busy with someone else. KrisComment
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Kris,
Good to see you have found an activity that Erica wants to do. Sounds like the whole family had a good time.
I never looked at Crystal's wait for surgery as an inconvenience. Probably, because as far as I am concerned Crystal had the best doctor in the country working on her. Crystal and I knew if she didn't have surgery by mid March there would be no basketball for her next year. She is only restricted for 6-9 months, depending on what she is doing.
Don't get impatient with the waiting process. You'll wear yourself out over it if you do. Right now, enjoy the time for playing around with Erica, because the rest of the summer, after surgery, won't be the thrill of a lifetime. Do keep in mind that even when you do get a date with Shriners, there is always a possibility that a more urgent case can get it from you. It doesn't happen often, but it happens. If there is a child that has cancer and has a window of opportunity for surgery, that child gets scheduled. Crystal had a date and lost it to someone else, but then got the same date back, scheduled at a different time. Yes, there is a huge disappointment about it, and lots of tears. But, the thought of a child that needed that spot more than she did set in and she felt better about it. The best part about Crystal's surgery, is that I got to meet the parents and the girl that got her spot. And, she truly needed it worse than Crystal did.
As far as missing school, you need to make sure you ask for a tutor, then Erica won't get behind. The school has to provide a tutor for Erica. Just because she is home healing, doesn't mean the school won't help her. You need to be talking to the school now about this, so that some preparations can be made. Waiting until the first day of school will be way to hectic for everyone involved.
Well, take care and hope all goes well for you. This is such a difficult process to go through and the waiting is the worst.
'til later,
NikkiComment
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Thanks for the information!!Comment
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Nikki, I talked to the school. They barely will work with me at the moment. Basically, until I produce the actual surgery date, everything is on hold. They also do not schedule tutoring until after she has been out of school, with doctor's orders for like 2 weeks. She has to miss 4 weeks before she is able to qualify for home-tutoring. In this case, it sounds like she probably won't need tutoring. I tried to basically allert the school of what may be to come, so they can plan ahead for possible tutoring, but they said they don't do anything until the doctor presents a surgery date and fills out a form requesting services. I did get them to "believe me" that she will have to miss PE all next year, no matter when the surgery is, so they allowed me to choose a different class instead of PE without the doctor's excuse. That way, I made sure Erica was able to get the class she wanted. Do you think I should pursue this stuff and possibly get Shriners to send a form indicating she is to have surgery and possibly need tutoring? For one thing, our school system has to share lots of textbooks as it is, so they say they can't get extras, when we have asked to buy copies of the books before. Maybe the medical people can require it to be purchased, for the extra set at home? What all do you people who have been there done that recommend I fight for, or just wait and see? KrisComment
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Kris,
If it looks like your daughter is going to miss school, be sure to go in and have a pre-arranged slip done, this can be done the first day of school, if she doesn't start then. Our schools out here on the west coast do them. At that point, the teachers should fill out a form telling you what she needs to be doing at home. You will probably need to have the doctor send a note for an extra set of books at home. This is a must have. She will not be able to carry anything over 5-10 pounds for quite a while. So, a backpack is out. We have a set of books here at the house and then Crystal has her books at school. If the doctor requires it, the school has to abide by it. I got the song and dance about there not being enough books. I just looked at them and said it isn't my problem and that they needed to figure something out. Crystal's English Teacher copies the pages she needs to be working on at home and so does her Math Teacher. So, there are options, but you may have to put your foot down about it and make the school tow the rope a little bit. You have enough to do that you don't need to be worrying about whether your daughter has the right books at home, let the school figure it out in the fall if she doesn't go back right away. I am assuming your daughter is a freshman or sophmore, so these are hard years to just let them pass by.
Let me know if I can offer any suggestions as you go along. I don't know the answers very often, but someone on here will. I am so glad I had a very small school to work with and that they have been so good to Crystal.
'til later,
NikkiComment
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Nikki, you gave me a boost to start bugging the high school. I wonder if I need to find out the textbooks now so the doctor can require them to order extra copies for her for August? I assume the only reason there are never enough or extra books is due to funding. I'm sure the publishers would LOVE to sell extra books when ordered early enough and paid for by (insurance or Shriners?). I am afraid if I wait, the books may take months getting here and then be too late to help much. It sounds like I do need to plan on her at least not attending full time starting the end of August, huh? Our school is starting 2 weeks later this year than it always has, so we do have that bonus. We have her using a rolling book bag now, to try to prevent too much stress on her while we wait for the surgery, so I don't know how that will be in high school. Will she be unable to pull the book bag and stoop over to pack/unpack it? Let me know if you think I should contact Shriners for the medical notice of upcoming surgery and start bugging the school for extra books, etc. Thanks, KrisComment
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Kris,
I would definetely get on the school's case about the extra set of books. If you have to, ask the doctor to write an order for them. My daughter had surgery five months ago and is still only allowed to lift/carry 5-10 pounds, so we've had a lot of practice with bookbags, etc. She has a set of books at home and one in each classroom. Instead of carrying a binder, we bought her a file folder type thing. I don't really know how to describe it, but it is made of a plastic material and has several divided sections in it and there is a flap that closes with a stretchy band. This allows her to carry all of her papers for each class, but doesn't have the extra weight of the binder. As for the rolling bookbag, remember, for a while she won't be allowed to bend, twist or turn. Jamie wasn't allowed to do any of this for two months. She will be allowed to bend at the knees, but I don't know how it would work for her to bend enough to pull the bookbag. Maybe you can have her try it now before surgery. Hope this helps.
Mary LouComment
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Mary Lou, thank you, I will start making enemies at this school today! Hope I'm kidding. I hate fighting the system, but my kids come first. After all, the drudgery of paying my husband's business bills, taxes, running the kids around, and other stuff just isn't enough work to do,is it? I need to become more of a pest than I already am with all the schools my kids attend, right? Isn't that a mom's job?! Give backbone. Thanks for the pushes to get me onto this while I wait and wait for that surgery date. KrisComment
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I have been "listening in" and will also notify the school about the books. I don't think that will be a problem for us. My son will be in 8th grade and attends a small charter school and I imagine someone else will carry the books to our car and we'll handle them from there. We'll reverse the process when bringing him to school. Is this unrealistic?Comment
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Kris,
I was in the process of responding back to you, and someone was trying to get through on our phone, so had to get off the internet. However, Mary Lou covered it pretty good. I am sure Erica's doctor would write a prescription for the books. The school will have to get them purchased at their expense. I have wondered, what do these schools do when a student doesn't leave and a new student arrives. Does the new student go without books?
I know it is another thing to have to contend with, but it is easier to have your ducklings in a row now, than to have to gather the little fuzzy things up later. I've had to get bowed up at school on occassion, but I pick my fights carefully with them. This is one of them that is worth picking. I called and asked for a meeting with the Superintendent (because we are a small school he is in the same building), principal, secretary, and teachers. The principal started to deny my request, but I told the secretary that it was a good meeting, not a "I'm gonna rip you head off" meeting. Once the principal heard that he was okay with it. Usually, when a parent wants to meet with everyone, there is a problem. The first thing I did was thanked them all for being there and that I was going to appreciate all of their help and efforts. I took Crystal with me, so she knew the rules of the game. We worked out a plan of attack for Crystal. Some of the teachers didn't have extra books for home, so we agreed they would copy anything out of text books that Crystal needs on a daily basis, other teachers sent us home with books. We explained that sometimes she can't sit for long periods of time. They all said that she would be allowed to stand if needed and even offered their desks and chairs if it would be more comfortable for her. You know the saying "IT TAKES A VILLAGE," well this is part of that village too. Erica will need extra time to get from one class the other, as you don't want her in the hall with the possibility of being bumped. If she eats in the lunch room, you'll want her released early enough to beat the crowd and have someone go with her that can carry a tray for her and get seated. That first day back to school after surgery is like their first day in Kindergarten or 1st grade. Our experience since Crystal has been back to school. WONDERFUL. Her Ag Teacher had the secretary call the other day, because she didn't have her brace on. So, they do watch over her and it made me feel she was safe.
Erica will learn her limits very quickly. Crystal learned them quickly, and I am sure Jaimie, Mary Lou's daughter, did too. Our problems now are that our girls are feeling so good, they want to be doing other things and aren't allowed to yet.
Craig and I decided that Crystal could take her sheep to our first big livestock show, it's in three weeks. Her doctor wouldn't approve, but we feel that with her FFA Advisor's help and supervision, she will be okay. She has several sheep that she has shown for years now. Her ram is her favorite, we bought him for her when he was 3 months old. He does all the work for her. When he gets in the show pen he is all business.
Well, I better get for now. Keep us posted.
'til later,
NikkiComment
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Dawn & Kris,
With your son being in a charter school, I think you would be fine with having someone carry his books for him. With Jamie, however, there are about 175 kids in her grade alone and she is with different kids in each class.
Like Nikki said, now is the hardest part of the surgery/recovery. Jamie is still very restricted for being five months post-op. She is still not allowed to change classed with the other kids; she isn't allowed to ride the bus; no running, jumping and of course no gym. She is going nuts! I seems like all of our summer plans are on hold until after June 9th when she goes back to the surgeon. Jamie's school has been wonderful! I hope your schools will come around and not make you fight for what your kids deserve.
One last thing and no one has every mentioned this to me and when I mention it to others on this forum, they admit they never thought about it either. Talk to the school about fire drills. I apologize if I've mentioned this to you in the past. Jamie's principal notified her of the drill beforehand and she left early and went to the office, that way she wasn't in the crowd of kids trying to leave school in a hurry.
If there's anything else I can do, please ask. We are all here for you.
Mary LouComment
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Mary Lou, thanks for the hints, including the fire drill. Around here, we also have tornado drills, which my daughter already has to deal with, since you can't bend over very well with a brace. I called Shriners today and they will mail me a request for extra school books. I'm glad I have researched so much about this surgery: I can't imagine it if I didn't warn my family and friends of the upcoming year of changes. We are ready to deal with 1 year of the kids not getting run around all over the place and taking Erica to and from school daily. I am not ready for her moods, but I wasn't ready for my 3 teenagers' moods when they arrived these past few years, either! My youngest just paid me $5 for back-talking. I hate these attitudes now, and I can hardly wait (yeah, right) until Erica wants to do what she is not allowed to do when her pain ends and she is at the stage of yours and Nikki's kids. Will we all be glad when our kids grow up and graduate? Ok, I won't go that far. Thanks, KrisComment
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Kris,
Aren't teenagers a blast. I have three of them also. Did your mom ever say "I can't wait until you have one just like you?" My mom did, and boy was she right. I got three of them. Opinionated and will stand up to anybody and all three girls.
I haven't figured out what is so difficult about the word "NO". It is only two letters and only has one meaning. We are really working on that one these days. Crystal went over to a friends tonight after she got her homework done. I told her to be home by 9pm. She got home at 9:15pm. I may have been out of line, but I told her 9pm and that is exactly what I meant on a school night. If she would of called me, which she usually does. It was dark and because we have so many gravel roads to travel, I worry about a car loosing control or something else going wrong. That was my teenage experience tonight. It is a rarety to have behavior from her like that.
I sure can't wait (actually I can wait) until they have one of their own just like them. I already have one that I raised for my brother, she calls us mom and dad, and is married with a 3 year old and expecting #2. She'll say to me "Mom, I didn't do that did I." I just have to laugh and say "Yes."
I am so glad Shriners is sending you a doctors request for the books so soon. It will make your life so much easier. Now, maybe the school will take you seriously and that you weren't leading them on. I think that may have been part of the problem. I never thought about fire drills or tornado drills. Kids in a rush to get out of the building or under something could really create havoc for a spine patient.
Well, I'm gonna go. I am trying to relax before I head to bed. I worked in my garage all day going through boxes and sorting them out. You know, keep, throw away and yard sale. I've thrown a lot of stuff away today.
'til later,
NikkiComment
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We got our notice today! Surgery July 18, Greenville Shriners Hospital. Check in July 14, 8am, then a weekend pass I assume starting Friday. School here starts August 25, so this should give time to heal before school. Yeah! Dawn, I hope you get your notice soon. Let us know! KrisComment
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