Mission Accomplished... Despite the Snow Storm!

We have had quite the event filled few days. We flew into Omaha on Wednesday without a lot of issues. We were quite the sight with all of our carry-on gear. Molly was a trooper and did well with all of the travel even though she didn't get the chance to nap.

We woke up on Thursday morning to 6 inches of snow and it was still falling. We were staying 5 blocks away, but with the white-out conditions it was a slow and stressful drive.

We made it there for our 7:15 appointment and started our first OI clinic. Molly had X-rays and Dexa scans done to start things off. She was fairly well behaved with a few tantrums thrown in to the mix.

We then headed upstairs and met with PT and OT. They were impressed with how strong she is and had good things to say. They think that she will probably get a manual chair rather than a power chair a least in the beginning. It was good to hear that those in the know were so optimistic about Molly's short-term future.

They have advised us not to encourage any movement or further development until she has had the rodding surgery. The bowing in her right femur and tibias is approximately 90 degrees. It is simply a matter of when she fractures her legs, not if. We already thought this was the case, so this was nothing new.

Next we met with Dr. Esposito (the orthopaedic surgeon) and went over her x-rays from earlier that day. He showed us that her bowing is both from side to side and back to front. He was impressed with how active she is and seemed almost surprised with her ability to crawl without incident. We discussed rodding surgery and what to do in the event of a femur fracture etc. After a long and involved discussion he advised us to consider scheduling surgery for between 16 and 17 months - that is 2-3 months from now!! I had envisioned him suggesting 18 months, so it has been an adjustment to be preparing for earlier. He said the ideal would be to schedule the surgery for the day before she is going to fracture. Unfortunately, we don't have a crystal ball to predict this, so we are trying to ensure that the surgery happens before the big fracture.

Her right femur and tibia are both quite bowed and need to be corrected surgically. Her left tibia also needs to be corrected. Her left femur looks good at the moment, but he advised we go ahead and rod it as well while we are going through with the surgery. It is a lot to process and we have some big decisions to make in the next few weeks.

On the day of the surgery he will start with her right leg and hopefully rod both her femur and tibia. At that point he will come out and discuss how things are progressing. If things are going well we will continue on and rod her left leg as well. We are also considering having a port put in for easy IV access for future infusions.

We will be scheduling her surgery in the next week or two. It seems that it will be in June, give or take a couple of weeks.

We also discussed changing Molly's Pamidronate dosage to the Omaha protocol (half of the Montreal dose). If and when we make this switch we will also need to switch to at-home infusions. If we go ahead and get the port when we do the rodding surgery home infusions should be rather uneventful. It is exciting and overwhelming to think about making all of these big decisions and changes.

it will be a nice security having the rods in place to reduce the bowing she has and also to stabilize future fractures. It is hard to envision Molly going through such a traumatic surgery, but the alternative isn't any better.

We have a lot of things to take into account before moving forward with the surgery. I am overwhelmed by the prospect of doing the surgery and I am overwhelmed by the prospect of waiting until a femur fracture to do the surgery. It is hard to know what is best for Molly.

It is also difficult that we are so far from our treatment center of choice. I don't know what will happen if Molly has a femur fracture before the surgery date, but we will cross that bridge if and when we need to.

I am so glad that we made the trip out. It was worth all of the efforts. I felt that they answered all of our questions and they seemed knowledgeable in ways that now one else has up to this point.

We are now in St. Louis visiting with Jim's parents. It has been another long day and I am going to sign off for now. I will try and come back and add more while it is still fresh in my mind.

Thanks for all of your well wishes and messages :)