Okay, first let me say….I think Katy Perry has a beautiful voice, she can dance, she is gorgeous and what I wouldn’t give to have a body like hers but even though I don’t possess those things, those are not the things I am referring to that she does best. What I am referring to is that she can make my little girl smile when no one else can. Through this whole ordeal this past year and a half with Hannah, the very few smiles we did see was when Hannah was listening to music! Yes, Hannah has a love for ALL music. Everything from Southern Gospel to Christian to Country to Rock/Pop. But, Katy Perry, by far is her favorite! Hannah wasn’t talking much or interacting with us much until we began this new treatment. Now, we cannot shut her up (I am not complaining here although my ears do hurt by the time she goes to bed at night, HA)! These are a few of the things she has said this past week to me that makes me know that Katy Perry is the BOMB:
1) “Mama, I love Katy Perry.”
2) “Hannah eat dinner with Katy Perry.”
3) “Katy Perry come here Hannah’s house play”
4) “It’s no big deal” Just listen to the song by Katy Perry called This Is How We Do It and you will understand
5) “Katy Perry Roar Hospital” There is a video made by CHAD (A Children’s Hospital) that lip-syncs to Roar and Hannah loves that video and seriously wants to watch it all.the.time.
6) “Hannah go Katy Perry’s house”
7) “Katy Perry beautiful” yes, Hannah and your daddy thinks so too! HA!
8) “Katy Perry come here NOW!”
9) “Hannah sing with Katy Perry” Seriously, this child talks non-stop about Katy Perry.
No wonder her music was such a calming thing prior to this new treatment. So, for that I say thank you to Katy Perry. I didn’t realize it until Hannah started talking again and verbalizing it constantly. In all honesty, Hannah was really non-communicative from March until just a few weeks ago. I didn’t realize just how much until this new treatment started working and bringing her back from what I refer to as hell. It is amazing this little girl that I have today and the difference from just a few weeks ago.
I have had people ask me though if that means we will be able to get out and do more things. So, let me address that for a minute. The answer is no. At this time, the worst thing that could happen to Hannah is to get sick. Any infection will go straight to her brain and cause the inflammation to worsen thus sending her into another flare. This new treatment is just that…..TREATMENT! Not a cure……there is no known cure. I know that IVIG could truly help her and possibly it could be the cure for her, but at this time there is no way insurance is going to pay for it and our hands are tied. Even Katy Perry would have trouble affording it! So, with that said, we HAVE to keep Hannah well! That is and has always been my #1 goal and it continues to be. It is imperative right now that she stays that way! So, as far as school, church, eating out, playdates, etc…..they still cannot happen; especially during flu season! We want to keep this little girl that we have and any sickness could steal her from us again. Please understand that and know we are not being rude or avoiding anyone and continue to pray for us. Please pray that this medication will continue to work and that we won’t regress back to where we were prior to this new treatment. My prayer is that this will turn into a complete healing for Hannah and that one day soon this terrible disease will be gone. That, my friends would be a MIRACLE that only God could do and I am believing that in His timing it will happen. This will probably be my last post before Christmas so let me wish each of you a very Merry Christmas filled with love, joy, happiness and peace that only God can give!
Until next time……..