She's about four months out and sometimes it's amazing the difference in her. If you asked her before treatment ended how she felt, she would always say 'good' or 'fine'. And really, she did - compared to how she had felt for the previous months during heavy treatment.
Now you can ask her how she feels and you'll get 'REALLY good!' as a response. It's a great and unexpected change!
She's able to keep up with her siblings a little bit better these days. And she's always up for any activity. The timing couldn't be more perfect now that the weather is warming up.
Madi is still being monitored closely by her group of doctors. Something that definitely gives Dad and Mom some extra piece of mind. Blood work is done every two weeks (for now). She is also receiving her IVIG (immune therapy) to keep her compromised immune system strong during cold and flu season. We also give her supplements that have been cleared by her doctors.
So, once a month we head over to the treatment center for several hours of IVIG, art therapy, playtime and candy for the little ones. I go fully prepared to do some work - although, I rarely get much done.
Other things that have been progressing for Madi? At six months out from the end of treatment, Madi will have the option of getting her port out. To say the least, she is looking forward to it. It doesn't bother her, unless it gets bumped, but it does come with some restrictions that would be nice to not worry about any longer. In order to get that port out, she has to be okay with getting blood drawn from her arm. Once she found out what was required, she was ready to start practicing.
This girl doesn't seem to be intimidated by much of anything!
Being a mom, I certainly have concerns as we move forward. I liken it to being a first time parent and going straight to panic mode whenever anything happens. You probably know what that's like, right? "The baby has a fever! Should I call the doctor?" or "I know head wounds bleed a lot, but is this too much?" or "Does that cough sound worse today? Is that a wheezing sound when he's breathing?"
Only mine sound like this now.... "She just fell asleep in the middle of the day. Is it because she had a sleepover a few days ago, or is she getting sick?" and "Hmmm.... is she looking pale or is that her normal coloring?" and "How long has that bruise been on her leg/arm/body? What color is it? Does it look like it's healing?" and my favorite "Where did that rash come from!" It's a new place for me to be when my usual MO is "Suck it up, sweetie! It's just a {fill in the blank}. You're going to be fine." I'm learning to adjust!
There's been some crazy energy swings lately, so the doctor humored me and ordered some extra blood work. At this point, everything continues to look good. Keep praying she continues to do well and can leave this part of her life in her past. Thanks for all your concern and continued request about Madi and her health!
I'm so glad she is getting her energy back! So thankful she is doing so well, such an answered prayer for so many.
ReplyDeleteJust glory to God...so much wonderful news in this post. I totally understand your fears. And I pray God continues to bless you all!
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