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Old 06-24-2006, 02:17 PM   #1
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Join Date: Apr 2006
Location: Chicago suburbs
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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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