first I have to thank Haven's doctor - Dr. Paz-Priel - he emailed me on Monday asking about Haven and how her trick or treat night went. Also about any new signs we've seen of her last treatment of Hi Dose Dexamethasone. I usually keep him updated on anything we notice that is good or bad via email. I hadn't emailed probably since she was last in there.
Since Hi CY this summer Haven has been able to go off her blood pressure medication, has started growing again, regained normal cortisol levels, sodium levels have remained constant instead of all over the board, AND she knows when she has to go to the bathroom! She was able to start wearing big girl panties during the day and could finally feel when she had to go and runs excitedly! Her energy level has gone up tremendously and she shows emotions we've never seen before! Sometimes she wants 20 hugs and kisses in a row......she likes to snuggle on the couch now and TALK YOUR EAR OFF! Even people she just meets - she will sit and talk with!
The part Hi CY didn't get was eating and drinking and weight. But to be honest this could still be affected since no one else has tried this before for ROHHAD. We have no idea how long it takes. It took over a month before she was able to regain the feeling of having to go potty after the treatment.
Then in September Haven started having thermal issues again - showing an old symptom had repopped up. Maybe taking away the more major symptom made this one resurface. She started getting the hot foot/cold foot again. Everything that was old that we forgot about.
So in October Haven went back in to isolation for High Dose Dexamethasone treatments. At first Kris and I weren't sure we really wanted to do this new treatment since it had only been 3 months after Hi CY. But the thought of not knowing what the heck ROHHAD is scared us even more. The doctor said we could wait 6 months if we wanted time to think about it but again we don't know if you let ROHHAD hang out and the symptoms stay if they become irreversible. Our fear is that since the weight was the first symptom 4 years ago that it may be too late to affect that and the damage is not repairable.
But we've seen so many good signs with the Hi CY and to not miss any valuable time Kris and I said yes and signed the billions of pieces of paper of everything bad that could happen. Just like we always do.
It has now been about 3 weeks since Dex and Haven has had a complete 10 days of no accidents at night - while sleeping! Her sleeping has been more sound and peaceful than ever. She used to snore and we haven't heard her snore even one little peep. Her O2 stats stay near 100 (they had dropped to low 90's during Hi CY). She is overall generally happy and finally wants to get off the couch and do something more than workbooks.
I'm not sure what lies ahead for Haven or what her doctors are coming up with next but I am happy we did this. Many people that know Haven can see the changes in her. We still battle weight but now that she will actually do more than sit we are able to work on that with some exercise. We still monitor her food and calorie intake and watch all sodium. She is still on a strict fluid diet - she can drink a 2 liter in 10 minutes and not feel sick.
All I can hope is that maybe it takes 6 months or 7 months or even 10 months but that the food and drinking become normal and the weight starts to even out with the growth factor.
It's hard but the doctor put it a way one time that has stuck with me "Yes you are great at monitoring her food and her drinks and when she can eat. But she is only a child. What are you going to do when she is a teenager and an adult? How will you control it then?" Therefore even though I am extremely happy with all results so far we must continue to push forward and figure this disease out before it has a chance to take over.
We also thank everyone that has supported us and helped us over the past few years! My job and the people I work with are amazing - we LOVE all the food all of you have made us for the past 6 months! I can't thank everyone enough. We love the fundraisers that friends and family have put on for her - Johns Hopkins loves it too because the bills get paid! :) The gifts and notes that make Haven smile and laugh and give her projects to work on during the day are priceless! That fact that you have read and continue to read about her helps me continue the fight.
We credit all of our strength and courage to Haven - if I was only half has brave as her.
We appreciate all of our doctors (even though I'm a pain sometimes) with all that they do and everything they research for Haven.
We also send out a huge thank you to Haven's nurses. They deal with more stuff from her than anyone. She feels so comfortable with them that she thinks they are only there for her. Even paging them to come give her hugs and kisses.