Friday, May 30, 2014

Ahavah Updates

Sorry it's taken so long...

This pretty much describes how we are feeling right about now:

We just moved... well... still in the process of moving. We haven't even fully unpacked and cleaned yet. And we spent a week in the hospital. This week was filled with doctor's appointments and blood specialist appointments.

So Ahavah got the IVIG treatment to help raise her platelets. They went from 341,000 as of yesterday!! Wooohooo!!! 

However, her iron levels are still low (Hem. at 8.8 still), and her lead levels came back high (13). We had to get Alecia and Hayven's lead levels tested yesterday and they are med/high (6, 4), but higher then we would like them to be.

Some are pretty certain this is ITP now, while other's are still thinking the chronic nose bleeds are something more. As much as I want to believe Ahavah simply has acute ITP (which is now best case scenario), I feel like there is something we are missing. I can't tell if this is Mommy's instinct, or just me being over-worried.

So we have been catching up on sleep as you can see:


Ahavah had a nose bleed this morning even though she is on a few different treatments to prevent the nose bleeds. They want to put her back on this Amicar she was taking in the hospital, but it caused her to pee blood clots so I am still praying about whether to put her on it or not.

Ahavah is so restricted in the activities she can do. She can't run, jump, climb ect. She can walk and sit. It's been REALLY hard on her since she just wants to play with her friends and go to class on Sundays and Thursday. Thankfully she got to go to her CKC commencement:

We are praying for God's will in all of this as always. I am also praying for God's wisdom on how to handle all this. At church I feel like a nervous wreck following Ahavah around, making sure she doesn't run or jump or climb anything!! Thursday it was so crowded and so... overwhelming, I wanted to cry!! Still figuring out what life looks like for us at the moment. 

Alex at our appointment to get Alecia and Hayven's blood drawn

So the plan for now is to monitor her for the next 2-4 weeks and see what her body does as the IVIG treatment begins to wane. Then we will decide if she gets another dose of the $2000 treatment, or if we really think this is ITP we are dealing with. 

Thanks for all the prayers, comments, and emails. I am reading the articles you are sending!

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