Fortunately vs Unfortunately.

So I feel really bad, and it's been eating at me for awhile now. Sadly, I am just now able to sit down and write about it.
In my last post, I put in there that we met another little girl, Bella and her mom Courtney. Please know that talking and meeting another family that had OI was very beneficial. We were able to ask questions that a doctor or nurse couldn't answer without living with OI. For example, Caroline is slowly starting to eat solid food, with that comes some nasty diapers. Well according to everything we have read, we shouldn't grab Caroline by the ankles to change her diaper. Well trust me when I tell you that it sucks. It can be very dirty to say the least. So I asked Courtney what she did. And she said, that as she learned Bella's strengths and weaknesses she was able to grab 1 ankle to at least move it out of the way. So I have recently started doing that with Caroline. Not yanking or pulling up. No way could I do that, but I can at least move her ankle so I can avoid some messiness. I also asked Courtney about picking Bella up. Remember we have been told we can only pick her up behind her head and under rear. Well Courtney agreed that it was close to impossible sometimes to do that. So what she would do (of course, this is all as you learn your child's strengths and weaknesses) is put her arms around Bella's chest, not under her arms. We have started doing that with Caroline as well. Of course, we aren't allowing everyone to do this, because some people don't know their own strength. If we were to squeeze to hard around her chest, we could possibly break a rib and puncture a lung. That could be catastrophic. I asked her basic questions. Like does she play during recess? YES. Does she go on the monkey bars? YES. Does she ride a bike? YES (with training wheels and with someone with her at all times) Does she take tap/ballet? YES. Do they have a 2 story house? YES. Does she swim? YES, everyday. (They live in Southern FL, so it's possible everyday.) How did she learn to crawl? Walk? How did you let her do the everyday things that others don't have to constantly worry about? You name it, I probably asked it. So as you can see talking with Courtney and meeting Bella was very fortunate for us. Sadly, seeing her use a walker and hearing about her wheel chair and fractures was very disheartening, and very real. Especially when Dr.Marinin told us that Caroline was also Type IV. (We are still waiting on skin biopsy results, to give us more info on the severity.) I never thought of wheel chairs or walkers. Yes, I thought of braces and crutches, but never anything to the extreme of a wheel chair.
Whoah I feel better getting that off my chest. I really didn't want to sound ungrateful for meeting someone else that has OI. It was very educational and eye opening!
We did get Caroline's DEXA scan results back this week. We were floored and shocked. One would think by now nothing would scare us anymore, but then you get that call and your heart just drops. Caroline's score was -5. What does this mean? Well base line is 0. She is compared to other 5 1/2 month old females. -7 is most severe. So she is borderline severe, but more moderate. What do we do with this info? Nothing. It's pretty much just an FYI. DEXA scan measured her bone density. Caroline has osteoporosis, that pretty much sums it up. Once she gets older, we could possibly give her some of the research drugs and maybe the score would decrease, but it would not decrease her fractures, she would still have OI. So what's the point? Web and I have decided to table the discussion until she at least qualifies for the drug, and that's not until she is at least 2 years old.
Also as of now, we still do not have a tooth. I know most moms get excited when this happens, but I am petrified and don't want it to happen. I don't want brittle teeth! But I do know that we have so much to be grateful for! If I have learned anything this week, it's that we have a healthy, happy, alive child!!