Looking up!

Long day, but worthwhile. I worked nights, Todd and Kourtney picked me up at 715 for our two hour trip into Children's. We were of course late for our 9 am endocrinology appointment. Dr. Stewart was able to give us some possible causes why Kourtney's growth has been stunted. Of course this means more bloodwork, and even an IV test to determine if Kourtney is a candidate for the growth hormone.

Kourtney was perky today, and seemed that those deep rooted coping skills have come to the surface once again. She made us laugh out loud today. It was fun to see her so much lighter today.

The visit to the psychologist  brought a whole new perspective to her really low feelings.  One of the biggest issues identified was her insomnia issues which will be handled by a psychiatrist.   The psychologist will also be phoning the school to recommend how Kourtney's schedule can be more accommodating.  The friendship issues will probably go on.   Who really loved highschool??  We are so thankful that her caregiver Kimmy is such a positive role model in her life; committed to Kourtney and genuinely loves her.

There are so many things in life we have to be thankful for, however, there are times that the volcano needs to erupt and I think that is what happened last week.  I think today we are back to just simmering. There are changes being made but at this point we are still really weighing our options.
There are 2 families I know for sure that are reading this blog, and I want to encourage them - you know who you are.  I know that this blog is difficult for you to read, however,  sometimes all the cards need to be laid out on the table. I don't think anyone can imagine the intensity living with EB can bring to a family as a whole, and at times it is OK to say, " I can't do this anymore."  We have taught Kourtney that she doesn't have to suck it up all the time, and pretend that life is fine.  That is why we have the blog, because it reminds people of the 24/7 of this disease and how it can become all consuming.  I want to encourage you too; look after yourself, mentally, physically, make sure you see Dr. Bennett at Children's sooner than later because she is great! But most of all keep communicating with other families with EB. That was not a luxury we had and now there are 3 of us all within 1 hour of each other. Going through this journey together is invaluable! We can all be survivors together and support each other.