Sara was diagnosed at birth. She was 6 weeks early and presented with a muconium ileus. Her first 2 years were filled with hospital stays, surgeries, med changes, and a stressed mom. Her last surgery was to get a Mic-key button. It was a life saver. Now her weight is up, her height is up. She is just above the 50th percentile now. It's only happened the past 7 months or so. She's spent most of her young life in the 5th percentile. Anyway, I"m not really sure what comes next. Her lungs have been clear for about a year. We have her meds down to the 7 that stay all the time. It's maily just figuring out her enzymes at every meal and snack. Preventative tchest therapy, and night feeds through her button. I want to try pre-school, but I don't know how. I wonder if I'm going to need to home school. She finally has a couple of other little girls to play with. What do I do now? Is there something I'm supposed to be doing? It just almost feels too easy right now. She's happy, healthy, and growing. I feel blessed that she's not having more trouble than she is. But I just don't know what to do now. Help?!?!
Hello,
Sounds like you've been through so much, but came through with shining colors. You've worked hard to get to this point enjoy it and your little angel. Just keep up the regular routine...
As far as schooling goes? When we faced the idea of home schooling or regular school, the clinic explained it like this. Of course the life span for our CFer's is much longer then years past and they will need good jobs with good benifits. So that means college. (your CFer shouldn't be going to work in a chemical and dirty factory). The two thoughts on this are this....
1. Keep your child home and protect them from as much as you can. So they are as healthy as they can be when you let them go off to college.......
2. Send them to school and let them build up a resistance to viruses ect......Of course they will be sicker here and there during their childhood......
I had been doing daycare since before my son was born, so he was exposed to lots of kids already and was doing remarkably well when Dx at age 3 1/2. So I chose public school. For one he needs the social interaction from friends and teachers. I want him to have as normal a life as possible. His sister was already in school. For two if he doesn't build up much immunity growing up? How hard will being exposed to everything be when he is starting college (repeating classes would be expensive)? Will he spend that first year or so sick with everything? How will he get good grades or even do the school work if he's hospitalized? How will he handle at that age letting people know for the first time that he has CF? Will he hide it and skip meds?
I hope this helps and I know it's a hard decision to make. Talk to your clinic nurses and doctors. They can tell you if the kids home schooled are healthier then those going to public school. How college students manage their CF. The school system does have to work with you, but it can be frustrating.
God bless
Thank you so much for your help. I guess I sometimes forget I'm not the only mom in the world with a CFer. I have talked to a few pre-schools, but they don't really want to take her because of the enzymes. They serve breakfast, lunch and snacks. They told me I could come and sit with her while she eats, but they didn't want to be responsilble for her meds. What's the point in taking her to pre-school if I have to be there all day?!? I want her to have as normal life as possible. I want her to be able to go to school and play with other kids. Expose her now so she can build up her immune system, but I can't seem to find anywhere that wants to work with me. I thought about home schooling her just long enough for her to learn how to take her enzymes by herself. Then send her to school, that way she can do it herself and not have to depend on others to do it. It is just so frustrating!!! Are there any laws that say they HAVE to help? Are they going to work with me when she gets into public school? Her doctor just keeps asking if we want to put her in school. They don't seem to be much help on anything. They can't even help me with deciding what settings her vest should be on!! Starting to feel totally isolated and alone.
As for enjoying every moment, that's the easy part! I cherish every moment day in and day out.
Hello,
I think we all understand that isolated feeling. It doesn't help that our CFer's aren't allowed to be together. So we can't get together and talk face to face with other CF parents. I also feel it isolates our children terribly, but what can we do about it? Thank God for the internet or I'd lose my mind, lol
As far as the schools? A goverment run preschool if they have one where you are is your best bet for not being turned away for meds. ( Even our local Y now charges $2 dollars extra, for handing out meds to children during daycare) But I will caution you that at least here goverment preschools are mostly for extreme poverty levels and/or mentally or physcically handicapped kids. You don't want you CFer thinking she's ill like them, that's why I didn't place my son in the one here when I had the chance.
The public schools K-12 are another fight you will have to face. My son was the first CF child to go to ever go to this school. Here my son has always been made to go to the nurses office before snacks and meals for his enzymes. Their reasoning is that no child will carry on them even a tylenol or midol, in case another child would take them. There are so many kids taking meds that the school reasons that this doesn't single any of them out. I'm sure that's not the case but you can't fight it either.....
I hope this all works out for you both soon but they grow up so quick once they start school, lol Enjoy her being little for now! Merry Christmas!
That helps a lot. You're right, if it weren't for the internet I would lose my mind as well. I have a feeling she will be the first CFer to go toher school as well. The only state run pre-school around here is one for special needs children. I thought about it, and you came to the same conclusion I did. I don't want her thinking she's any different than any other child. She already has some body issues because of her button. She doesn't like to wear anything that doesn't cover her completely. She also doesn't like to do her vest when other children are here. I never thought self esteem issues would start so early. There ae so many things I don't want her to miss out on, or think she can't do beecause she's "different" . I'm sure as with all other parents, I just pray they will work with us. Happy Holidays everyone. I hope you have a wonderful time this special season.
Hello,
I have a 16 year old daughter and have done daycare for the last 14 years. I'm continually amazed at how different little girls are from boys in some respects. I think my daughter was 7 the first time I heard her say she thought she was fat? She's always been under weight? Some girls are more poised and self confident, but all start very young at worrying about fitting in, looking just right and being liked or conforming to the" ideal". (The "all girls" love disney princesses and littlest pet shop thing, if you don't your weird) Where this all comes from I'm not sure..... But I can see where it could be that much harder on a CF little girl. Although the chances are she will never be overweight.
For my son, he was dx at age 3 1/2, since I was the adult in charge of the daycare here in my home. No one ever teased him about using his vest or doing treatments. We take it as a matter of course and everyone excepts it. (It helped that the only time I let them play video games was vest time, lol The kids would ask him to start treatments so they could play with him) I tried to answer the children's questions clearly and simply. Collin now explains it to the new kids who haven't seen it before and does a great job of it. It's like it's not a big deal, I just have to do this to stay healthy. It was never hidden so it was never a issue. He invites friends over after school to play Wii with him while he does his treatments. It's nothing for his friends to say "get your vest on and lets play" No drama just everyday life......He understands that everyone has something that bothers them, wearing glasses or being afraid of the dark...... Something that is different, his is CF.
My son picked up alot of confidence from clinic visits actually. Being so brave for shots and throat swabs in front of the nurses. They always told him how much better he did then even alot of the big kids. He knows he does somethings like at hospital visits that would scare other kids his age and it boosts his confidence. I had two kids who had to have their booster shots last summer and were worried about it, Collin laughed and said I get shots or blood draws at almost all of my clinic visits. He tried to help them feel better about how quickly they would be over and done, lol
God Bless and I hope you have a merry and healthy Christmas!
Good Morning - It's been a long time since I've been on here - but i have an 18 year old son diagnosed at 3 yrs. old. I too had the question of whether or not to send him to preschool - I ended up sending him to a Christian (Private) School from 4 years until he hit Junior High when I placed him in Public School. I was fortunate enough to be able to afford it back then! At any rate it helped with me to know he was only in a class of 11-12 back then and that he was being "watched" more and that the teachers were aware of his condition- Heaven knows we are all over-protective moms with a healthy child - never mind one with CF! Believe me, I live and breathe CF 24/7! As he grew older and was more "one on one" with his own condition (as much as a teen will be! : ) ) I felt more comfortable with him in public school and I also appled for a 504 accomodation for him which gave him a bit of flexibility. This helped with obtaining a tutor when he is out at length and/or when he went in for a tune up (3 stays his life so far! ). I do believe he tends to catch more of any bug that is flying around but I don't think keeping him under wraps in the house is any healthier. He will graduate in June and then the hard part will come! We haven't figured out what to do about college yet, although that is the game plan..I guess more on that to come! Good luck and health to all of you! Marylynn
It's so wonderful to hear all the good things that happen in life. I am so happy that all of your children are doing well. I am happy mine is going well,too!! :D I went to visit an old high school buddy and took Sara with me. She lives out of town so it was kind of like her first sleep over. My friend has 4 children. One boy (oldest) and 3 girls. When we did her vest treatment the first time, they had some questions, but not a lot. Then it became a game. The girls wanted to sit behind her and give her big hugs, so they vibrated as well. Not only did Sara love the game, but the positive attention from it as well. They also didn't really say anything about her button when it was time for bath and changing clothes. We were there for the weekend. By the end of the first day, the girls, Sara included, were running around with barely any clothes on. I was so happy she didn't feel so self-concious about her scars and button. I know they have helped her in a way I don't think I ever could. They made her feel "normal" and beautiful. It was so nice I didn't want to come back home. Unfortunately, she had a well child visit at her GP so we had too. lol. Now we're back at home, and I have to try harder than ever to keep her in clothing! LOL!
I am so thankful for everyone on here and in my life. I don't know what I would do without the love and support from others. I hope everyone has a wonder Christmas and a joy filled New Year!
What do I need to know to be a good advocate for my son?
- KEMiller2008
on Dec. 15, 2009 at 8:53 AM