Sorry its a bit late, but we have been crazy busy!
We had a week full of appointments in Minneapolis. We arrived on a Saturday night around 9, which is ok because it doesn't get dark until about 10! We finally found the place we were staying. We had a one bedroom apartment at an assisted living senior complex. It was rather nice and comfy. Plus it was super easy to get to the hospital, we were about 5 minutes away, didn't have to go on the interstate which is usually a night mare at rush hour times.
Sunday we went to the Mall of America, we ate and let her ride some rides, after we stopped at a Target to get some snacks and stuff we could cook in Microwave or the oven.
Monday we were at the clinic for our first appointment at 7:30.
She did her oral glucose test which was negative. We saw dermatology and what we suspected was right, her "rash" is indeed eczema. They gave her a bunch of creams, lotions and instructions.
During our week visit we had numerous X-rays and scans done. One scan showed that her bone age is 10.5 years, which isn't that bad but also gives her room for growth, which was another test that she had done, a growth stimulation test which is needed for insurance to get them to pay for growth hormones. On one of the X-rays we saw where she has the beginning of scoliosis, great more for the poor child! We saw Endocrinology there and found a lot of stuff out from them. Unfortunately we are having to wait a but to get into our local doctor. I was hoping to start her on some of he recommended medicines before school starts, because one of the things we found out is that she is in full blown menopause!! That explains the extreme mood swings and constant hot flashes!! Poor thing, we haven't even explained to her about her menstrual cycle yet, we figured let's get over BMT first then we'll start that talk. Now I don't know how to have this talk with her. I think I'm just going to leave it alone for a year start her on the hormones then next years check up we will talk to her and give her the medicine to force her to have a menstrual cycle... 13 is a good age to start, heck she's been through enough already. We also found out at that visit that she needs some vitamin D, so we have started that pill.
ENT was a good check up, pulmonary function test was much better this year than last, what a difference a HGB of 12.5 makes compared to 5!! Biopsy went well, don't have all the results but she is still 100% donor making all three cell lines. Her only count that is a little low is her IGG, which is one that is part of the immune system and helps fight infections and viruses, but Dr Wagner said we won't worry about it unless she starts to get sick a lot with colds and stuff. Which thankfully, she hasn't had a lot of and it's been low for a while now. Marshall gets an infusion once a month because his is low, but if he doesn't get his he gets sick. (he's almost 9 years post transplant)
We started her vaccinations just this week. She was scheduled to get 7 shots, they broke it up for her (thankfully we don't live but 7 miles from the pediatrician) two she got Tuesday, two more today and 3 next Thursday. Then she gets another 7 at the end of August. Then she won't have to do them but one more time, I think a year later.
She is getting excited because cheer camp will be starting on the week of the 9th. Then believe it or not school will be starting for them on the 8th of August. Still have so many dr visits I'm trying to fit in, dentist, orthopedic, and the shots all while trying to let her have summer fun since she missed it all last year!!
We did make it to a day at the beach, it was ok, they really hadn't been in a long while and both she and Nathan now have no desire to go back...they hated the salt water and they hated the sand every where! So we will stick to nice clean pools!!
Well have to run to get them up and dressed for more shots. Hopefully it won't be so long between updates!
Thanks to those of you who do still stop in a check on us, if there is even anyone doing so! Thank you for keeping Amelia in your prayers, we are ready for the next chapter in her life... Living post bone marrow transplant, one with a little less restrictions!
Thursday, June 28, 2012
Thursday, June 7, 2012
Happy, happy birthday to my beautiful wonderful little girl!! Happy birthday Amelia, we love you more than words can say. A day we were in fear of not reaching, we are here and we are celebrating and praying for MANY, many more!!
Your very proud mommy and daddy!!!
Your very proud mommy and daddy!!!