NIH

Well we are back. It was quite the experience! Let me start off by saying that Caroline is awesome on a plane! She couldn't have been better and we had nothing to worry about! She took the bottle during take off and landing and didn't cry or fuss. I think the fellow passengers on the flights were just as happy as we were!
The Children's Inn at NIH is great! This is where we stayed and they have done such a great job with the facility. The whole campus for that matter is so nice. The grounds are awesome, and it was so nice to take a walk around the campus when we 1st got there to unwind. There are sidewalks everywhere, a fantastic playground for kids, and tons of activities for children. Our 1st night they had movie night and gardening night. The kitchens are updated, laundry rooms have nicer washer and dryers than our own home! And all of the facilities are free for your use. A lot of the people that stay at the Inn are there for weeks if not months, and I am sure they appreciate the ammentities. HOWEVER, if we could change one thing it would be the rooms. The beds are in desperate need of being replaced. As well as the linens for the bed and the towels. I don't think Web and I slept at all during the 1st night and the 2nd night we were so emotionally spent I think we maybe got an hour or 2. I already know where we will be making our 2010 tax deduction, directly to the Children's Inn. It is such a phenomenal place and the families deserve better beds!
Ok now to the nitty gritty. Our visit with the doctors. Every doctor, nurse, tech, volunteer was extremely nice. They know that everyone that walks into the hospital is there for one reason and that's for their loved one to get the best care possible. We were immediately greeted with kindness and everyone showed us where to go. We started at 7:30 and went nonstop.
The good news, Caroline is STRONG! We met with the physical therapist, Holly and Dr Paul. They pulled, twisted, all of Caroline's limbs and they were so happy with her! On a scale of 1-10, she scored 7-9 on every muscle group! They were shocked that she could hold her head up, sit up (with assistance) and had great neck strength. She still has a way to go, but again they were so happy with how she could pull herself up while on her tummy. Caroline showed off as well! The day of her appt she was able to touch her toes, right arm to right leg. Not quite the left, Holly showed us an exercise to practice and as of now, she can grab her left toes with her left arm! Huge! She can also put her right foot in her mouth! Great milestones! Holly showed us more exercises and told us that the water will be the best exercises for Caroline. We were even given an xxxsmall vest to use in the water. It's pretty darn cute! Good thing is we can do a lot of the exercises in the bathtub for now. Because we don't have a pool, or a membership to a pool! It's on our to do list!
Not so good news, Sweet Caroline has Type IV OI. This was not what we wanted to hear and it totally took us by surprise. We were expecting to hear she was mild Type I. Caroline had a skin biopsy done and we will be told if her Type IV is mild, moderate, severe. So what's the difference? Well in laymans terms, Type I=good quality of collagen, less quantity. Type IV=poor quality of collagen, normal quantity.
Unfortunately, or fortunately, however you want to look at it. We shared a room with a 4 year old little girl, who has OI and her mom. Bella has Type IV OI on the more moderate to severe side. In her 4 short years, she has had 22 KNOWN fractures, and of those fractures the majority are her femur bones. She uses a walker, and sometimes a wheel chair. But her mom lets her lead a somewhat normal life. She takes tap and ballet, plays on the playground, rides a bike with training wheels. Bella is slowly learning "rules" of OI. She can't jump off a swing like her friends but she can slowly get off the swing. Bella is currently in the research program where she gets a research drug, pamidronat via IV. This drug increases density of the spine, but does NOT prevent breaks or decrease your severity of OI. She has to come to NIH every 3 months for a week. I cannot imagine that lifestyle for our family. We have no idea if we want to do the research drug. Luckily we don't have to decide that for awhile, because Caroline has to be at least 2 years of age. I just hope and pray that her Type IV is mild, but who knows.
If you want to read more about Type IV, please do so. http://www.oif.org/site/PageServer?pagename=fastfacts.
I am still trying to wrap my head around it.
In the end, are we glad we went? Yes, we learned some great exercises for her, plus got to meet a doctor that has been working with OI for over 25 years.. We go back in August for more x-rays, physical therapy, etc. We are still waiting on her skin biopsy results, and once those are back then Web and I can be tested to see if we are carriers or if this was a spontaneous mutation.
I know that I am forgetting tons of information. But I think I have touched on most of it! We continue to pray for Sweet Caroline! She is such a beautiful little girl!