Another heartbreaking autoimmune diagnosis for Hannah with more to come, we are afraid. This is now leading us down the road to another new specialist. By the time we are done, Hannah will have a specialist for a every part of her body!
A heartbreaking decision that had to be made that not only affected us but friends who have become family.
Heartbreaking regression with Hannah happening right before our eyes.
It seems to be never-ending. I try to keep going and I pray my “outward” demeanor continues to look as if I am handling everything fine. I pray my aching heart and crushed spirit doesn’t show up in everything I do. I continue to put one foot in front of the other and do the things that HAVE to be done, but in all honesty, I don’t accomplish much more than the “have-to’s.” If I were being completely honest, I am devastated and wonder if the day will ever come where Hannah gets a break and where Dennis and I do too. I hate watching my little girl in pain. The tears, oh the puddles of tears she cries daily due to depression. The anxiety that eats her up to the point even getting in the car is painstaking. The obsessive compulsive behaviors and routines are awful to watch and yet, I cannot imagine what it must be like for her. Please don’t ever “joke” about OCD…..it is a real and horrific thing. Hannah obsesses over everything to the point of hurting herself by picking her skin, biting her lip/mouth, among other things. The tics, motor, facial and verbal are awful and we won’t even talk about the anger and rage. Watching it happen is heart-wrenching. The repetitive behaviors and speech….the same phrases constantly all.day.long using the only voice she knows which is extremely LOUD has me some days wanting to scream.
My nerves are so raw, I even find myself yelling at God more often than usual. I assume He understands and I am of the opinion He already knows my heart and thoughts so yelling at Him should come as no surprise. I am not mad at God. I do ask why a lot but I don’t blame Him. I just wish Hannah could get a break…..a miracle cure would be wonderful and something I will never stop praying for. I just pray my ability to stay sane and that my health continues to do well…..the “sane” part could be up for argument now……I think Dennis might wonder at times if I am, in fact, all there! Here is a “funny” story for you….so, last Thursday Hannah had a Psychiatrist appointment and at the last-minute I decided to go without her. I called sweet Lyndsay and she came and sat with Hannah. I went to the Psychiatrist and when I got there she asked, “where is Hannah?” I told her, “I didn’t bring her because her anxiety was off the chain and it is a 45 minute drive and she never would have made it, plus I had some things to discuss I didn’t want her ears hearing.” The doctor was okay with that and we discussed Hannah. About 20 minutes into our conversation I asked, “do you see adults?” Her response made me laugh…..she said, “I think that is what I am doing right now.” HA! I just pray I don’t lose my mind in all of this. There are days I wonder how we do this forever, if in fact that is the case and that healing miracle never comes. I know she will get that healing in Heaven, but I am so praying for an earthly one. I will be honest, I want to LIVE as a family. I want to do fun things with Hannah and not worry about her anxiety, OCD, rage, and depression getting in the way. I want her to be happy and enjoy life. I want her to have the energy to run, jump, play and laugh. I want her immune system to be such where she can have play dates and go back to school and church. I want so much for her and for Dennis and me and yet, the tunnel seems so dark right now. I don’t see that light at the end of it and after this week that tunnel appears to be getting longer and darker.
Just today, Hannah’s handwriting and math skills have regressed again. We know this is part of PANDAS but it is so crazy. She seriously cried all morning today until I finally gave her some Motrin which helped her get happy for a period of time (it works but doesn’t last too long and Motrin is so bad for her stomach, kidneys and liver, so we use it cautiously). When have you ever known Motrin to help with behavior and emotion? Well, when you are treating brain inflammation, it does. This is what so many doctors cannot wrap their heads around. Motrin helps treat the brain inflammation causing all Hannah’s symptoms. It is the reason anti-psychotic drugs, antidepressants and other things don’t work…..it is inflammation we are dealing with, not mental health! I am thankful to have a Pediatrician and a Psychiatrist that understand this and we are praying that Dr. Winesett (Neurology) will be willing to treat her with High-dose IVIG again in January when we see him. IVIG might be our only hope to get Hannah back…..if it isn’t too late!
I truly didn’t sit down here to type a book….it was going to be a quick update and my fingers just wouldn’t stop typing. This is therapy for me. It really doesn’t matter if it is read or not…..it helps to write. But, since I have typed it, maybe you will read it and say a little prayer for us? Prayers of healing for Hannah and well…..prayers for healing for Dennis and me too…..this has been hard on all 3 of us and at this time we don’t see the light at the end of the tunnel.
Until next time………