Post Hi-Cy Plus 125 125 - wow. Honestly our entire time in Baltimore seems sort of like a dream. I made so many deep, meaningful friendships. Somedays I long for the days of sitting outside on the back porch at the Ronald McDonald House with all my friends. Its very strange, but adjusting to being home is very, very hard. In some ways living across the country, at the RMH, is so much simpler than the real world....especially the real world of having a sick child. At RMH everyone had a sick child, so we all understood each other. At home and returning to the real world, a lot of days I feel like Ive gotten my butt kicked, and sometimes the reason is the difficulty of having a child with such a serious disease like ROHHAD. Note to self: if you ever feel like kicking someone down when they have a sick kid, try to refrain. Four years ago I didnt have a sick kid either, four years ago I had no idea where our lives would take us. You could be me tomorrow. Not to be a Debbie Downer, I just seem to have so much on my mind tonight. I saw where two more kids were diagnosed with Rohhad. It drives me crazy! I cant stand the thought of one more kid having to endure all that Reagann has endured. I want to know how many are diagnosed. Its more than 100, I would bet. Will we ever know? On a lighter note, Reagann is still doing great. We are trying our best to keep her in a bubble...she doesnt get out of the house too often...another 2 1/2 months and so many restrictions will be lifted. Her number one thing she wants? To eat salad and get her ears pierced. Ha! Her oxygen is still everywhere at night, up and down. Crossing our fingers for next Friday....supposed to get IVIG! I pray this infusion will help her o2. Her little personality is o fun to watch it come out a little more everyday! Shes really just so cool. Our endo emailed me tonight, they are again having a conference tomorrow to determine dosing for the medication to try to help Reagann lose weight...hopefully we will be able to begin soon. Please continue to pray for our ROHHAD family and all our kids. Help us raise awareness....share our page, ROHHAD Fight page, anything with ROHHAD...share. If we can help one kid, its all worth it. Yesterday as I was telling someone about Rea & talking about ROHHAD, explaining the disease process, I noticed the look of pity from this person. I guess you get immune to the disgusting disease, but when you see strangers reactions, it sort of hits home a little more. Reality! Our children can stop breathing at any time....can YOU imagine living the way we all live? I cant even imagine it, and its my life. As always we appreciate the overwhelming outpouring of support from everyone...we are blessed for sure. Hope Anchors the Soul Hebrews 6:19
Posted on: Fri, 18 Oct 2013 00:56:01 +0000