-Sweet girl did so well on the plane! She ate and slept and waved and blew kisses at people and could not have been better.
-Unfortunately, our luggage was not in Omaha to greet us when we got there Tuesday night. Even more unfortunately, I made a last minute decision to put my purse...including my phone (but not my wallet) into the bag I checked. Not smart. When the airline delivered our bags to us at 1:30am my purse was gone. The airline still says they are looking for it, but I'm pretty sure it's not going to show up. Oh well!
- Maggie had a DEXA scan and x-rays first thing Wednesday morning. A DEXA scan measures bone density and Maggie had to be completely still for about 10 seconds while they scanned her hip and another 10 seconds while they scanned her spine. 10 seconds doesn't sound like a long time, but it really is for a wiggly 10 month old. Luckily Chris brought his I-Touch so we pulled up an episode of Yo Gabba Gabba and Maggie was in a trance watching the intro song! Who wouldn't stare at this dude???
-Thursday morning we headed to the hospital at 8 for clinic. Each patient had their own room and the doctors and therapists rotated to each room. Everyone ended up hanging out in the halls in between visits so that made the time pass quickly.
-The OT & PT got down on the floor with Maggie and watched her play with toys, feed herself, army crawl and almost sit by herself. They were impressed with Maggie and said she was right on track for her age as far as fine motor skills, but of course is behind in gross motor skills. They basically told us to let Maggie lead the way as far as getting up on all fours and eventually pulling up (but that will be a while). She did show us how to help Maggie practice getting in and out of sitting.
-Next we saw the nutritionist. I had a lot of questions for her, mainly because our tiny 10 month old weighed only 10 pounds. She told me that Maggie was slim, but it was normal. We talked about a few ways to help add extra calories to her diet and transitioning to milk and mostly solid foods in a few months. I have a feeling I'll be calling her back soon with more questions.
-The nurse practitioner gave us the results of her DEXA scan. Her z-score was -3 to -4, which is below average for bone density, so they were amazed that she has not been fracturing.
-The Orthopedist, Dr. E, was super nice! He showed us her x-rays and we were amazed to see just how different her right and left leg bones were. They looked like they were from two different babies. He said the right leg looked like type I (mild) OI bone, while the left leg, which is the leg she broke in utero, looked more like type III/IV (moderate to severe) bone. He thinks that the mosaicism could be responsible for the difference. It was also clear to us that even after her left leg is roded to straighten it, it will still be significantly shorter than her right leg. That was kind of a bummer, but I know that Maggie is a determined little girl and will still get around in her own way.
-We discussed roding surgery and for now he wants to wait until she is a little older. We will talk about it more at clinic next year, unless she starts having a lot of breaks on that left leg. Dr. E said that with that thin femur and it's bowing that it will most likely "blow out" when she begins to weight bear...so I'm in no hurry for that!
-They also confirmed that Maggie does have DI, which is basically OI of the teeth. DI teeth are not bright white like regular teeth and are fragile and often cause pain. Usually they have to be capped. This was a bummer too, but hopefully her adult teeth with not have DI.
-Last, we met with Dr. Lutz. He is an Endocrinologist and Geneticist...basically a genius! We really, really liked him and he loved Maggie and was really intrigued by her. He has never seen a patient with mosaicism like hers and wants to find out more about it and how it affects her OI. He video taped all of the differences on her body (hand & feet size, stomach pigment, limb length) and us talking about them. He is going to present her case to a group of other genetics geniuses and see if they have ever seen a case like her. I'm really curious to see what they come up with.
-Dr. Lutz ordered an ultrasound of Maggie's kidneys to see if the mosaicism was affecting her internal organs too, but fortunately the ultrasound did not show any size difference.
-The doctors all agreed to go ahead and start her on Pamidronate infusions right away. PAM is a bisphosphonate drug that helps with bone strength and helps reduce bone pain. The other OI parents swear that it is a miracle drug! They called our insurance and set Maggie up to have her first infusion that night and the next day. Usually she will have one 4 hour infusion every 8 weeks, but the first one is given over two days and includes a hospital stay to make sure the patient does not have any kind of reaction. I stayed with Maggie Thursday night, while Chris stayed at the Rainbow House so he could pack up and check out the next morning. She did run a fever the 2nd day and act puny, but Tylenol helped.
-Even though we had not planned on a hospital stay, it was nice to get a feel for the Children's Hospital and their staff since we will be coming back every year for clinic and surgeries. Since the hospital serves so many OI children, the nurses, radiology staff, ect, know how to handle them without being instructed. What a relief!
Okay...on to the good stuff! Enjoy all the cuteness!!
Waiting for the doctors...she's pumped!
OT & PT
Sweet, sweet Ashley
The therapy dogs came to visit!
Hallie & Ashley (both are 7) entertained Maggie...
They were so sweet to her and she loved them!
Baby Brennan & his mom Betsy. Brennan and Mags were born just 3 weeks apart!
Lunch at the hospital.
Ethan & Bella
Part of the crew
Maggie getting her first PAM treatment. She just had 2 IV sticks and blood drawn from her heel. She was pretty pitiful (and ticked off)!
Chillin getting her PAM!
Baby Caroline and Mags hanging out! Poor Caroline had a broken femur so she had on a big cast on her leg and around her waist. I think these two will be buddies.
Heading home!!
Overall the trip was great! It is such a relief to have Maggie under the care of such experts. They were able to give us confident answers to our questions because they have so much experience with OI kids. I love that they are so passionate about their OI patients and are very proactive in their treatments.
The very best part of our trip was getting to meet other OI children and their families!! The OI community we've met online, and now in person, really is like a family to us. The parents refer to our OI babies as "snowflakes" because not only are they precious and fragile, but they are all different. Different looks, different levels of fragility, different physical abilities. I loved all of the snowflakes we met and find so much comfort in seeing how determined they are and how much they have accomplished. So many of them would risk a fracture to be independent and experience things that other children experience and I really love that. I want Maggie to be careful, but I really want her to enjoy life and not feel like she is always being held back by a disability. It was also neat to spend quiet time with some of the moms and hear individual stories of how they felt when their child was diagnosed and how they have adjusted. These moms are so strong and I've learned so much from them. Is it strange to say that I'm excited to go back next year so I can visit with everyone???
