***gimmietimm*** — The Bump
Special Needs


Hey there, so sorry I am just responding to your response to my post below. First off, can I just say I read your post and thought that you are AMAZING. I have seriously been through less than 1/100th of what you have been through and the fact that you are still here, surviving, and a good mother is amazing! And a mom to more than two kids two, wow! 

I cannot believe everything your poor son has been through. He is beautiful and it hurts my heart to read about everything he has had to endure. What an absolute fighter. I like to think that God has great things in store for my daughter and reading about your son I already see he must be doing great things.

As for my daughter's treatments and disorder, there isn't really any explanation as to why she has such an extreme case. Such is the joy in an "idiopathic" disease, right? We had her platelets checked yesterday and she had a GREAT response to the IVIG/high dose pulsed steroids combo. We will see how long it lasts, hopefully at least a few weeks. I am having some difficulty with her medical team though. One doctor things that even with her good response we should move forward with a low dose chemo (considered a secondary treatment) in a steroid sparing effort. Her other doctor is the opposite and thinks we should stick with what we are doing in terms of primary treatments (ivig, steroids) for now. So not only do I have to worry about my daughter but I am not getting a clear cut answer either. They are consulting with other hematology clinics so hopefully there will be some consensus here soon.

As for her protection, luckily she is not mobile just yet, thank God! However that is definitely something I will have to worry about. One time when her count was really low she toppled over, bumped her head on a toy and had a huge purple bruise. She also will just bruise super easily from holding her, her bumping toys, etc. I hate seeing her covered in bruises when she is so low. We have tried to be really cautious with her immune system as well but have loosened up a bit compared to the first few months where we basically kept her sequestered! What did you do with your son?

Lastly, we are very fortunate in that my husband works for a pharmaceutical company and we have great medical insurance. We definitely met our deductible early on and have actually met the co-insurance so right now the only thing we have to pay for the rest of the year are co-pays.

Thanks for telling me so much about your son. I think you both must be very special! :) 

Re: ***gimmietimm***

  • Holy crow!! I tried to respond the other night, and the Bump went down!!!!

    Thank you for the kind words! I don't even think even I realize the magnitude of what's happened since DS was born, it simply is our life. You're right, he is the biggest fighter, but he's also calm, cool, collected and has a wicked sense of humor. I do believe he's here for a reason, and big things are in store for him. I can't wait to see what it it is.

    That's great that your dd is responding to treatment, you just never know!! And not knowing why something happens, yeah, that drives me bonkers, because you're looking for answers everywhere. I used to go on the internet on every site I could possibly find looking for anything that "matched" for years, and realized I might not find the answers. Hopefully your dd's docs will be able to give you that clear answer, or at least explain their thoughts. Bah, waiting sucks.

    Right now L's immune system is doing good, so it's the usual routine of handwashing and hygiene, keeping his sisters off him if their contagious (not easy), and keeping him home from school if he's out of sorts (or if some twit sends their kid to school with something bad, like whooping cough or chicken pox, he's out until the outbreak dies down). He's only missed 25 days this year, that's really good. He missed 40 last year (he was in hospital during the 2 wk Christmas break, I didn't count that).

    When he was really ill, we couldn't take him in public. So I'd take him to the park or the zoo when no one was around - I actually put him in our Chariot jogging stroller, it has a cover on it, kinda like a force field. He periodically rode in it until age 7. It made going out hard. We worked around it. Same for preventing injuries. He did bruise and break easily as well, his bones aren't as strong as they could be, partly because of the steroids. I made sure he wasn't bubble wrapped, but at least taking "safe" risks. Unfortunately, he did break his collarbone twice. He's also never ridden a bike, that makes me sad. We're working on finding him a recumbent sport bike (possibly with motor assist) so he can bike ride, but even a simple one is out of our budget.

    That's a stroke of luck that you've got such good coverage. Hopefully that never changes or you never have to worry about it. When kids are sick it's hard enough to focus on taking care of them and dealing with your daily life without adding such a big stress.

    I don't mind at sharing our story. I searched for a long time for a place to even just talk to other parents (even just message boards), but the options were limited and the posters couldn't relate. I stay here, because there is a diversity of conditions, and the ladies really are nice. I also pop in because I wished I had a shoulder to lean on, and I didn't have that.

    ETA: Had to finish my post, got "bumped" off and fell asleep before I finished.

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