Maria?

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anonymous

New member
Hi Coll,

We are ok- Sami is on IV's again. Her sisters had colds a couple of weeks ago and although she didn't seem to get sick like they did, her lungs started making a lot of popping sounds. First on the left side, then on the right, then pretty much everywhere. It just kept progressing and she was retracting more, so we went in for a clean out. Luckily, we only stayed in from Thurs. to Saturday before Easter. Easter Sunday was Sami's 2nd birthday. At least we were home.

I've been checking the boards regularly, but just can't get myself to post. I think I get frustrated and a little depressed that Sami has such a hard time. I feel like everything we do is not enough. It's a very isolating feeling to see that others with children her age and older are doing relatively well. I stopped checking the boards a couple of weeks ago when there were a lot of parents of newly diagnosed asking for info about CF and their child's future. Everyone was so positive and encouraging. Many people wrote about how healthy their children were. Don't get me wrong, I think it's great for all those who responded. But I just feel that's not the CF that my daughter faces everyday.

Thanks for the post, I hope my reply didn't bring you down. I know you have had a more difficult course with CF, so maybe you understand. I also know that days of administering home IVs at all hours, puts me in a bit of a "mood" - so I'll be back on the boards when Sami is healthy. She is doing much better this week, lungs sound clear again. Thanks again,

Maria (mother of three daughters, the youngest, Samantha w/cf)

By the way, I saw your pictures, you are so cute!
 
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NoDayButToday

New member
Hi Maria-sorry to hear Sami is on IVs again. If it makes you feel any better, I've been on IVs on my birthday more than once), on Easter, and once on my birthday when it happened to fall on Easter. Hopefully you'll bwe finished soon with them for a long time.
I have all these thoughts after reading your post that I'm seeming to have trouble putting into words (me? trouble with words? llol), but I just wanted to say I understand what you are saying and definitely sympathize. <3
 
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anonymous

New member
hey Maria
I was one of those parents who talked about my child is doing great right now,but I think its because things have not always been so good, when my child is sick I withdraw and rarley post when my son is good I feel like telling everyone. Hang in there, glad to hear sami doing better.
mom of 4yr old with cf
 
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anonymous

New member
Coll -

I would love to read your thoughts put into words. You always have such insightful and intelligent posts. I sometimes forget that you are only fifteen. I believe you have an "old spirit" that is filled with a maturity that some of us may never have.

To mom of four year old -

Thanks for the kind words. It's unfortunate, though, isn't it, that the times when we probably need the most support we tend to isolate ourselves and withdraw.

Maria
 
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anonymous

New member
Just wanted to say hang in there with Sami. I know where your coming from. I too would get depressed after reading the posts about how well things were going for everyone else? When things weren't going so well for my children. But just like you because I was depressed and busy doing Home IV's and such I wouldn't post. Maybe we are all like that. My kids (I have 3-2 have CF) had clinic the other day and Iwas talking to the Director about general CF health and she mentioned something I never had heard of; She said that Children with CF tend to have a really hard time the first 2 years of life. (True in my case) Then about their second birthday they really start doing better. She listed several reasons, natural immune system kicking in better, lungs growing larger and some other things. So maybe Sami is going to start doing A LOT Better!! I'll pray so. My son just turned 13 yesterday he too has spent his first and second birthday on IV's. He leads a fairly normal life now has good times and bad the bad times are fewer and farther apart than they were for a while. My daughter is 8 she has never has had as hard a time but the first two years were tough.

Hang in there!
Terri mother of three
 
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CHERIE4HARTS

New member
Hi- I am new to this site but couldn't help and want to write to you. I am noticing that very few parents of adults write in, and I have always felt that what saved me years ago was older and more experienced parents. My son is 21 now, and is not doing great, but not doing terrible. I can remember years ago when all of us young parents with young children got together we would compare the kids. I have learned (from 21 years experience) that it doesn't work. Every child with CF will show all different problems at all different times. It doesn't mean your child is sicker or better, sometimes you will have just an absoluetly great couple of years! and then, a couple of not so great ones. Then it will turn around again. Trust me. We are in a couple of the bad ones right now, but we always work together as a family team to help each other out. Yes, even at 21, we still talk about what would work, whats not etc. Just to let you know, my son was very sick when little, then around 10 to 15 fantastic, now okay. He has raced dirt bikes, snorkeld of the Fla keys, lived on his own, and given me grey hair! Last night they find a kidney stone on his cat scan, and he just laughs. He is great- hang in there and write whenever you feel overwhelmed- I would be glad to listen. Love
 
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Jenni

New member
Maria- so sorry to here that Sami isn't doing so well. I know how you feel about posting and being depressed, I cried 3 days last week, Some days I feel like screaming at the world, some days I hate it and how it makes them feel. Then I look at their amazing strength and get strength from them. They keep me going with their amazing attitude. Zachary and Gabrielle have an awlful cold right now. Their on antiboitics now. But I must thank you for all the info on childrens in the month in a half they have been there they have gained a pound an half each. Dr. Prestridge did talk about doing a tune up on both of them, but she said we would try to schedule it for the summer. We found out Gabrielle has 3 mutations, we are wanting on Zacharys to come back yet. Other then the kids being sick and on medicine nothing else is really new. Gabrielle got a wish granted from Make A Wish, we are going to Disney World on May 7th the kids are really looking forward to it. So am I a week without doctors and and the sick enviroment would be nice. Looking forward to just relaxing. I hope everything starts looking up for Sami soon. My thoughts and prayers are with you.
Jenni
 
A

anonymous

New member
Hi everyone,

We went to clinic today and Samantha's weight was up! First, time since Sept. '04. We will continue IV's for one more week just to make sure it's a good clean out. She is doing very well. She insisted on walking around the block with me today. That's a long way for a two year old. I'm teaching her the art of gardening, pointing out spring bulbs and emerging hostas! Things are looking up.

Cherie and Terri - Thank you so much for the encouraging words. It IS very comforting to hear from experienced CF moms. Cherie, like your son, I believe Samantha will have a fiesty spirit. That's a good thing! I hope your son is feeling better soon.

Jenni - I'm SO glad to hear from you. In fact, I thought about e-mailing you today to see how things were going. I'm also happy to hear that the kids are gaining weight. There are good people at Children's CF clinic. I am trying to organize a mom's night out for our newly diagnosed group, maybe you can come. I will e-mail you privately. I'm thrilled that you are going on your trip, you and your family are so deserving. Have a great time! Are you going to the center meeting (on quality improvement)? Thanks for letting me know how things are going and for the well-wishes. You are right, it's our children's strength that pulls us through.

Maria
 
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mott

New member
What children's clinic are you talking about? My 16 month old son is suspected of having CF so I've been reading all the postings and web pages I can. Trying to learn as much as I can just in case. I'm really scared.
 
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anonymous

New member
mott not trying to be rude but perhaps you could start your own thread about clinics since this is a fairly emotional and difficult personal thread?
 
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mott

New member
Didn't mean step on any toes. I guess this this isn't the right place to be searching for help--thought I'd get some help here but I guess not. I thought someone who is going through it could help but I can see I was way wrong. Oh, and I did start my own thread before writing in this one. I guess that's the wrong thing to do. Sorry for offending anyone.
 
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anonymous

New member
Hi Mott,

I don't know who posted about the emotional thread comment, but I don't mind answering your question. Both Jenni and I live in the Chicago area and we go to Children's Memorial in Chicago. I would be happy to answer any other questions you have, my e-mail is mdgoslin@comcast.net.

Maria
 
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mott

New member
THANK YOU! We live on Offutt AFB near Omaha so thought maybe you were talking about the Childrens Hospital here. I have never been in a forum type thing online before so I didn't know if I had "broken the rules" by asking a question or what. I felt really bad for possibly hurting someone's feelings. That's not what I was trying to do--I'm just trying to find answers. Thanks again! my email is shanemichelleott@aol.com
 
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Jenni

New member
The last 2 days have been bad again, Gabrielle has got an ear infection and they had to switch her antiboitics to something stronger, needless to say but we have gotten little sleep. I hoping by tonight she will be feeling better. I have so much to do and no energy to do it, my house is a mess, I have so much laundry to do. I feel like we have 2 or 3 good weeks then 2 or 3 bad weeks. I wish they could go a month without being sick or going to a doctor it feels like that is all I do anymore. Don't mind me I just needed to rant a little bit. Tomorrow will be a better day I just have to remember to be postive.
 
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