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Old 06-24-2006, 01:17 PM   #1
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please tell me it will get better?

This is a rant about my dd, so be warned!

So, she is sick AGAIN.
I am having such a hard time, I just need to talk about it, kwim?

So, as i am sure you guys mostly know, she has a terminal/degernative illness. She is 7 and had been doing well....

It seems like we hit a rough patch, and I am really hoping thats all it is, and that she will manage to get over it and that this is not the beginning of the end. I definately see the progression of her disease, but I am really hoping for many more years together. But, I am terrified as I am sure you can imagine.

Back in April she was hospitalized for several days due to siezure activity that just wouldnt stop. She was siezing for almost 3 days straight. All this while we were *supposed* to be on vacation! She came home, and has mostly recovered but still had more sleepy/bad days than usual, a new medication added, and just generally she seemed a few watts dimmer, if that makes sense?

Well, then maybe about a month ago she had strep and an ear infection. The thing with her is when she gets sick she is SICK, even if its something small. Her body temp doesnt regulate well so she spikes high fevers, like 106+ high. She also has respiratory issues that get complicated, etc.

Over the last few days I have noticed her wheezing, so I took her in to the ped today. Not sure exactly whats the cause, maybe some infection? Pneumonia? Back on antibiotics, 4 albuteral nebulizer treatments a day, 2 steroid neb treatments a day.

This poor girl. She goes through alot.Its just not fair, she is such a wonderful little person and she suffers so much. Its so hard for me to see her general health declining, its like the best part of me is going with her. She used to have some bad days, but mostly good. Now we really look forward to the good days becasue they are becoming less frequent. I just dont know how I can watch her slipping. I dont know what I will do without her, she is my entire world. I am a better person for having her in my life. I feel so lucky that I got to be her mom. Its just killing me to watch this horrible disease steal my baby. Without her, I wont have a reason to get up in the morning.

ANyway, thank you for listening to my ramblings, I just felt like I needed to get this off my chest.
mom to 14 yr old special needs princess 8 yr old little miss sunshine and our long awaited flower toddler!
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Old 06-24-2006, 01:35 PM   #2
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Re: please tell me it will get better?

Wow... I just got done reading your other thread and I thought I would check this out. You have a LOT on your plate, I can't even imagine what it's like to have your life. Do you have a faith in God? I don't remember reading if you do or not, but if you do, this is the time to really rely on Him. I don't have any suggestions for you, just
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Old 06-24-2006, 02:37 PM   #3
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Re: please tell me it will get better?

I haven't read your other thread mentioned by the PP...I don't know what to say all sounds so horrible and sad to me and I cannot imagine going through what you are going thorugh. It sounds like a nightmare. Is there some sort of support group you can get into....a parents of children with this type of disease type of thing or parents of children with terminal disease support group? A church support group...something? You really sound like you need a support system...some people to help you and guide you and maybe hook you up to some resources for some help or something. Help for you and for DD....mentally as well as someone to come into the home and maybe help out and give you some support there too? I'm so sorry....I can't imagine your pain, it has to be just horrible. Makes us wonder why...ya know?! Makes me feel blessed right now for what I have....

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Old 06-24-2006, 06:02 PM   #4
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Re: please tell me it will get better?

how very sad, i sure hope it gets better for you
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Old 06-24-2006, 06:16 PM   #5
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Re: please tell me it will get better?

I can't even begin to'll be in my thoughts and prayers.
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Old 06-24-2006, 06:35 PM   #6
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Re: please tell me it will get better?

mama! I have no words of wisdom, just know that you and your dd are in my thoughts.....
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Old 06-24-2006, 06:48 PM   #7
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Re: please tell me it will get better?

Theresa... you are such a strong mama... your sweet Celeste & Amira are both so lucky to have you as their mama! Your entire family is in my thoughts & prayers... lots more
Jennifer, mommy to zander, 5/30/04 & maddie, 7/8/07 & lizzie 10/01/09
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Old 06-24-2006, 08:23 PM   #8
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Re: please tell me it will get better?

Theresa, I am just in tears reading your post. I am so sorry about what's going on with Celeste. I can't even imagine how painful it is for you to go through this, and how frightening it must be when she isn't doing well.

The only thing I can say is that you are an amazing mother. You can't make Celeste well, but you have made sure that she is surrounded by love. She wakes up every morning knowing how cherished she is. Not many children in this world are blessed with that.

If there's any time that it would help you to drop one or both of the girls over here, please let me know. We'd love to have them, and if you were nervous about leaving Celeste, you could take your cell phone and just go for a walk around the block, or go around the corner to the grocery store or something like that, and then you could get back in a moment's notice if need be.

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Old 06-24-2006, 11:44 PM   #9
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Re: please tell me it will get better?

i have no words just know we are all here for you
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Old 06-25-2006, 06:37 AM   #10
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Re: please tell me it will get better?

I'm so sorry!..
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