She is doing great (considering…) out of the hospital. She LOVES to play with her cousins and LOVE LOVE LOVE’S her Aunts. Seems like the second Kristin, Suzanne or I walk in the room she is leaning and pointing and smiling, she'll say ZANNNNIIIEEE with a squeal!!! She is so precious.
Right now H and Brit are working with the doctors on her treatments. They are trying so hard to get ACTH (thats a link) for her. It's a somewhat rare and EXPENSIVE drug, It's 30k a box and one box will probably last about a month. It's also a daily injection rather then an Oral pill. They have to wait for the Neurologist to get back from vacation on Monday to get him to write the prescription. Lets all HOPE he writes it.
The community of people with OMS kids is a very small one, I found this website a while ago, chaseawayoms.org and had been e-mailing with Brenda the founder and mother of Chase who had OMS. We were going back and forth for a few days then all of the sudden she said, "I am driving right now AND e-mailing you, can you just call me?" So I called her, this random lady in Michigan, we spoke for about 40 minutes and she just pumped me full of info! She is the NICEST lady and she told me all about her son what worked, what didn’t work, what her foundation does and so on. She said GIVE YOUR BROTHER MY NUMBER! So they called her and she talked to them about ACTH. They were struggling getting her to take her oral Steroids (Prednisone) with out her yacking like I said in the last post so they jumped ship on that all together and are fighting for ACTH.
Today a WONDERFUL reporter from KSL, Shara Park, interviewed H and Brit and they are doing a feature story on Baylee and her OMS. Since it is so rare H and Brit are excited to get the word out about OMS. Shara did a ton of research before coming and even shocked us all about how much she all ready knew. She will also be interviewing Baylee's neurologist at Primary Childrens on Monday as well. The story should air next week sometime at the 10 o'clock hour. I will for SURE post a link or embed the story when it airs for all of you. SHARE IT WITH EVERYONE! Please! So many have been praying for her that don’t even know her, hopefully it will help.
Baylee has had troubles sleeping since the onset of her OMS. She’ll sleep for about 2-3 hours then want to be awake. Turns out that is just another thing that H and Brit will have to discuss with the Docs and get a medication to solve. Hopefully that can be fixed with meds soon because H and Brit are both running on fumes having only slept a few hours each night for the last 2 weeks. A very kind couple that are not even friends with H and Brit (friends of mine) booked them a hotel room for New Years Eve so they could have some alone/get away/sleep a ton time. Mom and Kristin GRACIOUSLY offered to give up their sleep and be with Baylee through the night. We are all praying that goes okay.
All in all Baylee is on the mend. All her little pokes and prods are healing, slower then normal because of the Chemo but none the less healing. Hopefully she can get the ACTH soon so she can be back to the Baylee we knew a month ago.
If anyone has PRE OMS videos of Baylee let H and Brit know, we would LOVE to have it on the news story. Also I think Brit is getting on track of blogging too, their blog is hdbrit.blogspot.com.
Keep the prayers coming, we have started the marathon of a race… hopefully the finish line is CLOSER then we think!
4 comments:
We gave the oncologist today the article we found about meds that Dr. Pransitelli uses for OMS kids to get them to sleep. It's in pill form but he said it doesn't taste bad but we'll probably have to get creative. Our insurance said they should be able to cover ACTH if they can find a pharmacy that has it, is a PPO provider and can list it as major medical instead of pharmacutical, so we'll see.
the above post was Britany :)
What a great blog entry. I can't wait to see the KSL piece. I wonder if it will help move things along with insurance if HD contacts his local legislative and elected officials - they are after all discussing alot of health care issues in Washington right now. Make sure they know about the news covering this and that he is being interviewed and maybe drop a hint or two about the cost and potential lack of coverage and ask if there's anything they can do, and make sure they know when to tune in.
Thanks for keeping us updated on Baylee's progress. Again our thoughts and prayers are with her.
Br. & Sis. Dyal
Post a Comment