Hit the Road Jack...

It has been while since my last post. I have had so much to think about/organize that I haven't made the time to write.

We are getting ready to head to Omaha on Wednesday. This is a BIG visit. We have such high hopes that we will get some answers to the questions that we have had since Molly was born. Our trip to Maryland in June was not at all what we were hoping. We left with at least as many questions as before the visit. It is so frustrating to be relying solely on local doctors, who have very limited experience (less than 20 patients EVER). Thankfully we have an online community of other parents to post questions to. This has been an invaluable resource, but it isn't the same as a doctor who understands the big picture and all of the nuances of each of these kids. OI looks different for every person. It is hard not knowing what Molly's future will look like. I have no concept of what she will look like when she is 10 and 20, nor do I have any concept of her capabilities and limitations.

I have so many questions floating around in my head. I am so hopeful that we will get answers to at least some of the questions we have. They will be doing blood work, x-rays, etc. at this appointment. We will be meeting with PT, OT, a nutritionist, endocrinology, orthopaedics, and possibly audiology. PLEASE let some of these doctors help shed some light on what is ahead and what is needed for Molly.

The big motivation for this appointment is to meet with Dr. Esposito, the pediatric orthopaedist. We will be looking at x-rays and discussing when we will do Molly's rodding surgery. We will learn more about the procedure (I hope) and the risks and recovery process etc. It is frightening to think about putting her through surgery when she is so tiny. I don't want to send her through that door. I know that she will benefit from it, but it is still a very scary risk. I know talking with the surgeon is going to make it that much more real.

We are also going to meet with Dr. Plotkin, the pediatric endocrinologist. We met him this summer in Omaha at the conference and liked him IMMEDIATELY. What a wonderful and caring man. He started in Montreal at the Shriner's hospital where they developed the Pamidronate treatments that Molly receives every 8 weeks. He has moved to Omaha and changed the dosage of PAM (Pamidronate) to 1/2 of the montreal dose. Many families have switched to this new dose. Montreal has found that, at their dosage, kids need to take a break after 4 years. During this time kids have a lot of bone pain and often an increase in their fracture rate. Dr. Plotkin has found that going to half of the dose seems to allow kids to stay on the drug continuously without needing this stop period. We will be discussing switching Molly from the Montreal dose (that she has been on for a year) to the Omaha (half) dose. Our local endocrinologist does not feel comfortable switching away from the Montreal dose until Dr. Plotkin has published his findings. I respect her opinion, but also want to do what is best for Molly. If we choose to switch protocol we will also be switching to doing her infusions at home. A lot to think about, but also the potential to have some great benefits for Molly. It would be nice not to have to expose Molly to the germs of a hospital 6 times a year, but we just need to think through the risks and benefits of changing away from the current standard. I hoping that through talking with Dr. Plotkin that our decision will become clearer.

As for Molly, she is doing very well these days. She seems to have recovered well from her rib fracture. She is now officially mobile! She is EVERYWHERE!! Jim and I have started babyproofing, but have a long way to go! She is crawling all over the house (several feet at a time). She wants to pull on everything and is especially interested in all of the remotes we seem to have. She is now saying Dada a lot, "dodgie" for dog, ba for ball, ma for more and is working on saying something for cat/kitty. She can show you where her ear is, mouth, hair, barrette and can point at lots of things in her books. We still need to work on expanding her signing vocabulary, but she is getting there!

I know that there is more to report, but she is upstairs and awake and babbling up a storm. There are new pictures online and I will post some later.

Hope you are all well. Write if you can!

Feeling Better

Molly seems to be in better spirits today. We gave her motrin during the night and that seems to have helped. She seems to be much more comfortable and has even started dragging herself around the room! What a little trooper :).

She slept a ton yesterday, probably a means of coping with her discomfort, which made yesterday a bit easier on all of us.

Keep your fingers crossed that we can make it to our appointment in Omaha. She is getting so much more active that the likelihood of things happening just gets higher. On the other hand, she is getting more active :), which is good for her bones and muscles and development.

Rib Fracture?

Molly has a fracture somewhere. She flung her body sideways while we were holding her and she bumped her side on Jim's arm. She cried hysterically for a good half
an hour and then seemed to settle down for a little while. She was in the midst of eating dinner and became hysterical again. There is a crunching/popping thing on her left side under her armit and around her shoulderblade on that side. You can feel it with every breath.

She slept until 3 am, at which time her breathing was more of a grunt (clearly coping with the pain) so we gave her more motrin. She slept until 7 and has been crying off and on. Her breathing has been shortand shallow since this happened yesterday afternoon. Her breathing seems better when the medication has kicked in, but in between doses she is grunting more and with breathing with more shallow breaths.

Nothing can prepare you for when this sort of thing happens. Hearing her cry out in pain is the worst thing in the world. She is a trooper and has even managed to smile here and there. I hope that the recovery period for this is short.

We are seeking out advice from some other OI parents and hope to get some assurance about what we are doing. We will take her in to the orthopedist tomorrow to have a look. There isn't much they can do with rib fractures, so we have (for the time being) opted not to go to the emergency room.

Here's hoping this is a short-lived incident.

Molly Is On the Move!!

Yikes!! Molly has been moving ALL around the floor this afternoon. She was moving herself FEET forward to get to things. She did it several times and seems to have figured out a way that works for her. This is good news for her and trouble for Jim and I :). I put her down, went to the bathroom and came back to find her WAY away from where I put her down. I am excited by this, but also terrified. I just hope her little legs can handle the stress of her new found mobility.

Hooray for Molly!

Here's the video of Molly Crawling CLICK HERE
and a video of Molly Laughing CLICK HERE

Our trip to Omaha can't come soon enough. Until we have that appointment I feel like we are driving around without insurance - not a good feeling, but hopefully we will make it to the end of the month.

Also, the woman who watched Molly in the water was so impressed with her that she suggested that our therapist consider doing a case study with her. It is nice to hear that she is so impressed with Molly's progress.

Busy Little Bee

We seem to have hit a new development speed! She is learning new tricks by the hour. She is also EXTREMELY active these days! Yikes!

She transitioned from sitting to on her stomach for the first time today. She also now says "baa" for sheep and "moo" for cow.

We had a water therapy session this morning, which Molly LOVES!! There was a therapist there who specializes in water therapy. She was impressed with how active and strong Molly was. It is always good to hear that from someone who knows what they are talking about. She could tell that Molly spends a lot of time on her belly by seeing how strong she is.

We spent over an hour in the water and I think she could have been in there even longer!

We just made flight reservations for a trip west at the end of the month. We're going to Omaha to have our first OI clinic. We'll meet with PT, OT, Endocrinology, and Orthopedics. We are hoping that we get some answers about the big picture for Molly as well as a definitive answer about when to expect to do her rodding surgery. The thought is that we will wait until 18 months and evaluate at that time, but if she has a femur fracture before that point that we will fly out and have the surgery done at that time. We are really excited to get some answers and get things in place for her surgery.

Here is a link to an article CLICK HERE about a family from Denmark that flew to Omaha to meet with the doctors there. There are some photos in the article as well (click on the "More About Marie Laursen" link on the right).

Here's a photo of Dr. Plotkin (in the forefront) with the family from Denmark:


After the OI clinic we'll fly to St. Louis for a visit with Jim's parents. It will nice for Jim to be home and for Molly to get to visit and meet all of their friends.