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Friday, February 4, 2011

Infusion #2

During our wonderful dinner with the hematologist (see previous post) my mom stayed home with the littles (hey, I was going to take full advantage of the free wine and dinner at Ruth's Chris). Thanks mimi! She mentioned to me that I needed to put away Camdyn's little chair because she caught her just before she tried to stand up in it. I heard her and intended on doing it the next morning when she was awake.

Saturday morning we were all getting ready for Caden's basketball game when we heard a thud and then a cry. Sure enough she had pulled out that dang chair and I assume (did not see it happen) she stood up and fell forward. She hit her forehead on the door jam. It did not look good. No blood just a big goose egg. I called the hemo on call and was on hold for a couple minutes before I just decided to take her in.

We had previously been instructed to go only to Santa Rosa's ER. They took her in quickly. The ER doctor did not seem concerned about the bump and was confident there was not internal bleeding but called hematology to be extra careful. It was decided to give her an infusion to just be on the safe side. As much as I hated this for her it out weighs the alternative of an internal head bleed.

The infusion was much faster and less traumatic than the first. Excellent nurse got a vein on the first poke. She never showed any symptoms or problems. It was nice knowing she was at normal levels for the next 18 hours too. She was left with a nasty bruise on her forehead but thankfully that is all.

I wish, wish, wish I could keep her bruise free (especially her little face.)

Meeting with an expert

We were invited to a dinner with a leading expert in the field of rare bleeding disorders last week. It was a very nice evening at Ruth's Chris Steakhouse. We were treated to a wonderful, yummy meal and truly appreciated the opportunity to met with Dr. Mathew's from NM. No surprise, we were the only VWD-III family there. I met two severe hemophiliacs, one seven one 23. It is the most comparable bleeding disorder to VWD-III we are told. I had such a peace talking to these brave boys. Both agreed that neither feel different than their friends and feel they are totally normal. Both play sports (no football) and do everything that they want to. One is on Prophylaxis- his mom infuses him every Sunday and Wednesday. No port- just the butterfly IV. They first apply numbing creme and he does not even feel the poke any more. He is the seven year old...he promised me it did not hurt :)

I saw my first port in a 2 year old with mild hemophilia. Neither of the severe cases had it but the mild did??? Goes to show the type does not exactly predict problems. That baby resulted with a brain bleed after birth (again thank you Jesus for my c-section that unknowingly protected my baby). For the first time I was with people that got fears, my concerns, etc... They were all there once. The parents all graciously shared their experiences with us. They assured us that it gets easier and less scarier and just becomes "normal."

Michael and I were both granted some time with the doctor. He felt that her case actually sounded more like a muscular Type I. Since the only problems we have seen are after shots (muscular). He offered a better way to administer her shots that we will try this month (ugh...shot time already). He gave us all the hope in the world with her case. It was a very nice evening....meeting new friends, having a nice dinner and feeling very encouraged.