Big Days

Yesterday was one of those days I can best describe as BIG!!  Since my last post, you can maybe better understand what that means!!  we left home at 7 in the morning to make our first appointment at UC Davis @ 1pm.  We made it with extra time and that was nice to stretch our legs a bit before we had to do more sitting around during appointments!!!

Our first appointment was with a genetic counselor to help us better understand the type of OI Little Bear has and to help us understand his future.  I think I said this earlier, but there is only one other person that has been recorded with the very same gene mutation that Bereket has!!!!  This means, we have her records, but it doesn't really tell us how his future could look compared to many others..... His type of OI is rare also in the fact that they have put his type in the category between 3 and 4!!!  There are only 14 other people they have record of that could be classified as type 3 / 4, but remember, only ONE of those people has his exact gene mutation!!  

Oh, it is a new world again we are being introduced in the medical field!!  I have found myself "kicking against the pricks!" so to speak!!!  He will have a 50/50 chance of passing it to his children, regardless of whether it is a boy or girl if he has children some day!!  We are still grasping all the new information and feel a bit on "overload!"  They will start bio phosphate treatment as soon as our insurance approves it and this will be a 3 day infusion in the blood and then it is absorbed into the bones!!  This is for bone strengthening and will be every 4 months for as long as it seems to be helping him!!  

He also had a bone density scan Yesterday and will have routine blood work with his infusions to make sure his levels are where they should be!  They say there is only one major side effect that is rare and that is around the teeth and gum damage.  

We also had an appointment for Eden for some reasons I wish to keep private.  I was so glad they worked with me on scheduling so her and Lil Bear were seen together at Endocrinology and saw the same doctor!!!  We had a bone age test, which is an xray of her hand to look at the bones.  We should be hearing the results on that soon.  These are hard days with our Christmas trip right around the corner, so Yesterday was a very BIG and HARD day for Eden!!  

Today was another HARD day, so, I really don't feel like posting but this is they way it is!!  It is hard to keep it up day after day when the HARD gets really HARD!!!  I am just hoping we get left all right and make it with my family where I hope to get a bit of a break and rest, yet I know that vacations are very BIG and generally tend to be tough!!

Yesterday at the Mind Institute

Bella and Bear

Bella's note to the tooth fairy!

school goes on!