Omaha in a nutshell

Our trip to Omaha was definitely worth it. Caroline tried to make it challenging by not sleeping, which made for some tired parents, but all in all it was a successful trip!
We met a lot of OI parents and their OI babies. It is absolutely amazing to me how not 1 kid/baby resembled each other at all. I guess there is a reason why they call OI children snowflakes, because not one is the same. But as parents we are all trying to get the best care for our child. It was amazing how many parents were told their child would not make it, but yet they are alive and well! It is truly unbelievable the audacity of some doctors. To give up hope like that, is just aggravating. I remember being told, "worst case scenario Caroline will have OI". Well we got it, but thank gosh we weren't told she wouldn't make it. I don't think I would have been nearly as strong as some of the moms that I met.

The OI clinic is definitely a good thing. You check in, sit in your assigned room and doctors rotate to you.
We 1st met with a nutritionist and I can not even tell you how proud she was of Caroline. We had to go through her meals from morning to night and she was so impressed with the food she eats. I guess making her food for the past 6 months has paid off! She is lacking in Vitamin D and Calcium but most kids are, OI or not. So we now give her a vitamin drop every morning in her juice, plus she is now drinking whole milk, so that will help her as well. But all in all, they were super happy with her nutrition. And those of you that know Caroline well, know she does NOT miss a meal. Sister wants her food on schedule, or she will let you have it!

We then met with rehab therapist. I think. I might be out of order, still a little blurry. The rehab therapist was supposed to be with the physical therapist to, but she had a sick child. This didn't make us happy, because Caroline needs PT big time. But we get the whole sick kid thing, but still disappointing. Again, the rehab therapist was blown away by how well Caroline is doing. She can reach, grab, feed herself, sit up on her own (when not casted), roll over, do most everything a one year old is supposed to be doing. We were hoping the physical therapist could tell us how to get her to go from laying down, to sitting up on her own. The rehab therapist gave us some pointers but suggested we reach out to a pediatric physical therapist in our area. I told them there were no PT's that had OI experience, and she said we would find that everywhere. But still call a peds PT, tell them she has OI, and they should still be able to help us out. So tomorrow we go back to our orthopedic surgeons office to HOPEFULLY, CROSS FINGERS AND TOES, take off Caroline's cast and I am going to ask him for his recommendations. Plus I have another feeler out there, PLUS she has 12 month shots next week with pediatrician so going to ask her as well. Hopefully by the time we are back from Thanksgiving, we can start her on some non water PT.

We then met with Dr. Esposito, orthopedic surgeon extraordinaire that everyone talks so highly about. We really liked him. He looked at our x-rays from Caroline's NIH trip back in April, plus the few x-rays that we had to take earlier that morning. (forgot to mention x-rays by 9AM, oye veh. you all know how I feel about those!) Caroline has severe bowing in her left (currently broken) femur. 70 degrees. 70. Take you imaginary protractor out from 9th grade geometry and imagine 70 degrees. It's amazing to me that this is her 1st break on the left femur. Dr. E told us she is a prime candidate for rodding surgery. Which we knew. Her right femur (which has broken twice) is barely bowed. It's pretty much straight but at the bottom of the bone is a slight curve. Her left tibia is 22 degrees and her right tibia is 33 degrees bowed. PLUS, our Sweet Caroline inherited the Partridge hip dysplasia and has that in her right hip. Dr. E said he has NEVER met another OI baby that had hip dysplasia. Glad my genes can stump him!
He did mention that we shouldn't do any rodding surgery until she has multiple PAM treatments, which is what our ortho in OKC has told us as well.
PRIORITIES:
1. PAM
2. Rodding
3. Hip
Chances are we won't do anything with the right hip for years. Like Dr. E said, it's really lowest priority. And let's face it. C won't be walking anytime soon with a 70 degree bowed femur. Can you even imagine putting pressure on that to walk? She would break it all the time. So we get her more PAM and see how much stronger her bones will get.
Dr. E also gave us some other news, that we were never told before. Well we knew she had osteopenia, but still. Caroline has stress fractures on her spine. WHAT??? How can that be? She NEVER cries when she is sitting, on her back, never holds her back. Well poor Caroline, doesn't know that the pain in her back isn't normal. She doesn't know any different. How sad is that? So here is this beautiful 1 year old who is in back pain, but to her she thinks it's normal. I talked to my dad about this in Omaha and he brought up how too much info could make you feel worse. And boy is he right. I could have gone the rest of my life, not knowing this info. They say, with the PAM treatments the fractures should heel and hopefully we should see less fractures. I guess time will tell. But I really could have done without that!

We then met with Dr. Lutz, the endocrinologist and he was so happy at Caroline's OI. Weird huh? He mentioned that she doesn't have the facial features that some OI kids have. This is mainly because she eats! She has muscle and fat! GO CAROLINE! Eat all you want! He said to get her started on PAM asap, and he is going to contact our local dr. here in OKC and that Omaha doesn't need to see Caroline until next November. Done and done.

Off to the hospital we went, C had her 1st IV and finger pricking for blood work. Not sure who it was harder on. Web and I or her! But she was a trooper, got her PAM and the next morning we were back at the airport on our way home. As you can see, it was such a whirlwind of a trip! We are so thankful that we were able to go, and thankful that we were able to meet other OI families. This was our 1st time, and definitely not going to be our last. I guess this seems long, but I promise it's in a nutshell!!
Love to all.

Caroline is 1!

What a great birthday Caroline had! Yes, she was in a cast and I had to literally do some things last minute, but with the help of Nana babysitting the majority of Friday, I was able to accomplish everything. Including a new outfit! As you can see in one of the new pictures I posted! She was the perfect birthday girl. She played the part like a trooper. All her friends and family came and I will talk about her 1st birthday to Caroline for as long as she will let me!

We just got back from Omaha yesterday and we are still gathering our thoughts from the trip. It was very informative, but also very eye opening. We met other families of OI kids and we learned that literally not one child is the same. Everyone is different. It's funny on the OI Yahoo website everyone talks about their OI baby being a "snowflake" and I never quite understood what they meant. But now I get it, not one OI baby is the same. We met 2 different 7 year old girls who both had OI and they are complete opposites physically. But they are both so sweet and so nice. They loved playing with Caroline! It's hard to believe they are living with the same disorder. The girls have been coming to Omaha for years, go to the OI camps and act just like 7 year olds should act. It was very humbling. We also met a 2 year old that is still wearing 3-6 month clothing, and a 9 1/2 month old that is still wearing newborns. Makes my breakdown of Caroline wearing 6 month clothing at 1 year seem stupid. It was also humbling to the fact that we just take so many things Caroline can do for granted. Caroline can hold her head up and sit up without assistance. A lot of these babies can't. Caroline has NO respiratory issues, a lot of these babies do. But what they all have in common is they are the sweetest babies and most resilient babies you will ever meet. You hear stories from the moms of the fractures, surgeries, hospital stays and you just close your eyes, take a deep breath and release. Then you think GOD for giving us our Sweet Caroline.

Once I have digested more of the information from the weekend I will post again. We met with so many people in one short day, that I am still not sure we got all our questions answered, but I know we did a good thing by taking her there.
Thanks to everyone for Caroline's perfect birthday! She had a blast! And Web and I did too!
Love to all!