Rough Day...

After having the time of her life and feeling like a princess yesterday at the very successful More Birthdays for Bella fundraiser for Fanconi Anemia Research Fund, it was back to reality today for Bella. She kicked off her morning with a marathon appointment in the Endocrine clinic for a check up on how things are going with her growth hormones. The good news is, she can start giving herself injections in the thigh she has had to avoid for the past 6 months due to a build up of scar tissue. The scar tissue has dissolved and is doing much better.

Unfortunately, that's about the only good news we got today. I mistakenly stayed home from this appointment and just sent Ben with Bella so I could finish up some stuff from the fundraiser. Generally Endocrine appointments consist of a quick weight, height, and a conversation of 
"any issues?" 
'Nope, no random side effects from the injections but she's growing like a weed' 
"Great, see ya in 6 months."

Sounds easy, right. Not so much this time. The height and weight showed that Bella's growth has slowed considerably....like waaaaayyyy slowed down. Last year she was growing at a rate of 8 centimeters per year and now she's only growing at half that rate. 4cm per year. Boo.

What does this mean? Well, it could be one of two things. First, it could mean that they simply need to up her dose. Maybe, because of her increase in height and weight, she isn't getting enough HGH in he injection. Or it could mean that it just isn't working anymore. The possibility exists that Bella's body has developed a tolerance for the HGH and it is no longer effective. That would suck. Ugh.

The only way to make this determination is to draw blood and see what Bella's levels are at. We were not prepared for this today and Bella was NOT happy about it. She may be tiny, but she has a lot of fight in her. Daddy (oh poor daddy) had to hold her sitting on his lap with his legs wrapped around hers (to prevent her from KICKING the guy doing the blood draw) and his chin restraining her shoulder. One of Ben's arms was wrapped around her chest, holding him against her and his other arm prevented Bella from using her free arm to give the phlebotomist and upper cut. Then the guy drawing the blood had to hold down her other arm while simultaneously trying to stick a needle into a miniscule blood vessel. Thankfully, after just a bit of digging, he found the vein and drew the vials necessary. 

The results will take a few days to come back, but if her levels are normal or high, then we are done. It means Bella's body simply isn't responding to the injections anymore and continuing to give them to her every day wouldn't do any good. She's still a good 4 inches shorter than her peers and stopping the injections doesn't mean she won't grow any more, but it does mean she likely will never reach the height of an average adult. The whole reason why we chose to go this route is because we didn't want her height to be a disability for her when she is an adult and I must admit that I am going to be quite disappointed if 2 and a half years of daily injections will not help us reach this goal. She will have enough challenges as a teenager and adult. I don't want her height to be one of them.

We are praying that the results will come back low because that simply means that her dose needs to be increased. There really is no way to guess what the results will be and we simply must just patiently wait to hear from the doc. Because blood was already being drawn, they took additional vials for immunology studies. This was recommended by Dr. Wagner from Minnesota as Bella seems to get sick a lot more than other kids, even others with FA. I will be interested to see if her immune system is working as well as it should be.

Because of the long endocrinology appointment (oh, and did I mention we also found out that our regular endocrinologist is moving to Chicago soon and the only other endo doc with a good koweldge of Fanconi Anemia at CHW left last year? Yea, that was great news too. They did say they are getting an endo doc from Cincinnati Children's soon though and Cincy is an FA center so we're hoping that doc comes with some background in FA otherwise we'll be travelling 3-4 times per year to Minnesota for endo appointments. Won't that be fun?) and having to coordinate the immunology study and the difficult blood draw, Bella didn't get to school until 1:00 this afternoon. 

As if her day wasn't bad enough, during recess another child on the playground accused Bella of pushing him down(um, kid, have you SEEN Bella? She's like half the size of you - oh wait, it did just take 2 adults to hold her down, lol) at some time during the whopping 2 hours she was at school and even though Bella and her friend Ainslee both swear it didn't happen, and the teacher didn't even see it, Bella was told to stand against the wall and informed she was going to be given a B.I.N. (Behavior Infraction Notice = basically a note home telling your parents you were naughty) if she didn't tell the teacher why she pushed him. Bella wouldn't admit to it and I believe she didn't do it. So now she's scared to go to school tomorrow because she thinks she's getting a BIN. 

Well guess what? Little Miss is getting her wish. She gets to play hooky in the morning again because she has yet another appointment. Tomorrow she visits the dentist at CHW to have sealants put on her teeth. At least she will be able to delay facing the music for a little bit.....and that will give Momma Bear a little time to make some phone calls to school and figure out what's going on with that BIN. Talk about a rough day for my little Princess. Let's hope and pray tomorrow is easier for her!

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