Pressure Sores Boo Hiss...

The Ups and Downs continue, but Molly's spirits are still good.  She went to school on Tuesday and had a good day.  On Wednesday she had OT (occupational therapy) first thing and then her teacher, Ms. Lynn, came for a home visit with her student teacher.  We spent some time brainstorming how we could make our house work better for Molly, which as far as Molly was concerned involved making her stuffed animals more accessible :).  We had lunch and then Molly took them outside to show how she drives around our circular driveway at warp speed!  Molly's favorite outdoor activity, other than driving her chair around the driveway, is to swing.  She has not wanted to swing since breaking her leg and who can blame her!  Yesterday she was obviously feeling better and said she was ready to swing.  As soon as I got her in the swing and we both saw how well it went, I realized that we should try going in the car (for the first time since Saturday).  I asked if she wanted to go to a toy store - figuring that a first car experience that was a good one would be a wise choice.  As soon as I loaded her in the car I realized that in addition to the toy store we should go and have some help making a new splint.  I was able to make an appointment to see Mr. Chip (a PA at Triangle Orthopedics) and off we went.  We made a new splint that went along the side of her leg and wrapped around the foot avoiding the heal.  I forgot to mention that earlier on Wednesday morning I found that she was starting to have a pressure sore on her heal from her splint.  This seemed to be a good solution and then off we went to the bookstore, where we got yet ANOTHER stuffed animal (a bunny) as well as some Charlie and Lola books, one titled "Broken" that talks about the boy breaking his arm and the other about Lola having the chicken pox and having to find a different way to participate in the school fundraiser (both of which I thought had great messages for Molly).

All was well until bedtime.  At this point she came up with every excuse under the sun and had Jim and I at the end of our ropes.  This was our fifth night of being in crisis mode and it is hard to maintain your composure for that long.  She has been sleeping in our room since her break, which also makes for long days and nights.  After 2 hours of begging and pleading Jim and I finally gave in and headed to bed as well.

This afternoon I took off her splint to have a look and found new pressure sores in different places.  I am now remembering that this seems to happen with her leg fractures and I SO wish that we didn't have to go through the same mistakes each time!!! Grrr.  So, I have now made a new splint that goes along the back of her leg from where her underwear end down to just wear the socks begin.  I am hoping that this gives her femur the support it needs without creating yet another pressure sore.

I found that I had made the exact same splint last time this happened and used that to keep her wrapped so that we could give her a bath for the first time in a week!  She is now in her own bed, clean, asleep and with a new splint and I am so hopeful that Jim and I will finally get a little bit of adult time and also some well needed sleep.  We are still setting alarms throughout the night to give her medication, but that is a quick up and down and barely even registers on the scale :)

Here is hoping that everyone gets a good night sleep and that the three of us can enjoy a weekend together free of pressure sores and other medical drama.

Femur Fracture Yesterday

We have been enjoying how well Molly has been doing, but yesterday she fell and broke her femur. She was in the house after the hot tub and slipped on a patch of water and shrieked in pain. I knew right away it was not good by the cry. We tried to figure out where she was hurting and I splinted her tibia (obviously now I know the wrong bone). The Urgent Care facility was open, so we went for an x-ray since it was clear this was a very painful fracture. They told us there was an old femur fracture, but he didn't see anything new... I hate it when I take a doctor's word over my own instincts - just because they are a doctor does not mean then know OI... we headed home with the tibia still splinted... after being home a few minutes Jim and I talked about the femur fracture on the film and both concluded that we would have known if she fractured her femur a month ago and that this must be the new fracture (so obvious in hindsight). I used a Sam Splint (emergency splint) over the tibia splint to go all the way up to her bottom and she seemed a bit more comfortable after that.

Our friend Dr. Mary, that is and ER doctor with 2 OI kids of her own, spent the night with us last night and helped me to make a new splint that goes from her toes up to her rib cage to isolate the knee and the hip. She does not like that she cannot move at all on her own, but seems to be much more comfortable. I am so glad we finally figured out the real source of Molly's pain and that she was able to get a fairly good night's sleep thanks to her new splint (and with the help of pain medication).

There was some good news. Her tibia that we just rerodded in September looks great. She used to have a non-union at the mid shaft, but that looks to have healed up amazingly well. It looks better than it has in over a year :). We will be emailing Dr. Esposito to see what he thinks about this latest fracture and how long we will have to immobilize her and how long before she can be back up on her feet. I am guessing 4-6 weeks, but we will have to wait and see.

In other Molly news...

Molly has changed a lot in the past few months and become a true 4 year old :). She has starting talking more like a kid and less like a mini-adult, which is great. I think this is thanks to her preschool and having the opportunity to have more consistent play dates with her classmates. One of the things that we are working on is getting Molly to participate in group activities at school, but not be too passive. Her teacher pointed out that when another child asks for a toy she is playing with she immediately gives it to them. She pointed out that if that trend continues she is at risk for being bullied in elementary school - something we had not thought about at all. So, we are working on her asserting her own wants, while still being a "team player" and participating in small group play. Figuring out these social rules is very complicated since there are so many nuances to the right way vs. wrong way.

Molly's imagination continues to be her biggest strength. She is constantly coming up with new things to do, build, play etc. and Ms. Lynn (her teacher) has done a wonderful job of incorporating those new interests into the classroom. Molly became interested in playing Dr. with her stuffed animals, so now there is a Vet Center at school with lots of beanie babies and doctor equipment. A few weeks later Molly asked if she and I could build a rocket, so we put together a VERY rudimentary rocket for her stuffed animals to ride in. She brought it to school to show the class and then Ms. Lynn began a habitat building center with paper and cardboard for the kids to build rockets, homes etc. for the beanie babies.

Molly has just started putting her face in the water and is now swimming around the hot tub like a fish! She puts on her goggles and begins swimming around the tub only coming up long enough to catch her breath! We will now be out of the hot tub for the next month or so, but I have a video of her from earlier this week...

Click Here for a video of Molly "swimming" in the hot tub

Click Here for a link to new Photos

Merry Christmas!!!

We woke up to a very happy and excited little girl this morning. She was excited to see that Santa came and brought her the two stuffed animals she asked for and some finger puppets and stocking stuffers.

She has been intoxicatingly happy. She has gotten in to the spirit of both the giving and receiving and went shopping with Jim for my presents and painted a picture on canvas for Jim.

We are heading to Molly's classmate's, Victor's, grandparents for Christmas "dinner" this afternoon, which should be a lot of fun. This is our first Christmas as a family without extended family and it has been a bit of an adjustment.

We went for ice cream last night and then drove to find some fun Christmas lights. We came home to sit by the fire and eat and enjoy being together. While Molly was standing eating her dinner she fell and it seems she might have a new fracture in her Right Tibia (the one with the cast on it). I was able to contact another OI family - that had experienced the same thing - and was assured we could at least wait through the night without an x-ray. She slept well and woke up happy, so either the fracture is very minor or the cast is doing an effective job of splinting it. Either way we are very thankful to not have to spend Christmas in the ER.

A Nice Visit in Maine, but Broke her Leg Yesterday

We have been in Maine since August 2nd visiting my family and enjoying the weather and fresh air. We have been busy: visiting family, playing at "Mimi and Poppy's", going to the park, visiting a petting zoo, and exploring the coast of Maine via my parents 32+ year old boat :)

Molly has had a blast. We were out yesterday on the boat enjoying a beautiful day exploring a couple of islands. We stopped at one to have lunch, but I wasn't comfortable getting stranded by the tide (in case we needed to get Molly back if she got hurt) so we headed off in search of another nice spot. The criteria for a good spot is very different than the typical so it took us a little while to find something appropriate for her and still fun. We were in the water walking to explore and she slipped and fell and I knew right away that something was cracked/broken. She calmed down relatively quickly and was happy as long as she wasn't moving and nobody was moving/carrying her. We stayed on the beach and looked for pretty rocks and shells for a good 20 minutes while she settled down and it was a good way to keep her distracted. I found a star fish and hermit-crab (my first), which were both perfect distractions. Fortunately, I had remembered her splinting material and was able to splint the leg to get her comfortable before carrying her to the boat and for the ride back to the harbor. We were very close to shore so the ride back was a non-event.

Today has been a long day, but manageable. I was able to put her in the kiddie pool without her splint on, which was a nice discovery. She didn't move much and winced when she did certain things - like trying to splash with both arms made her leg hurt). I am guessing it is a femur fracture based on what she can and can't do. We will wait another few days and see how she is doing before putting her through another x-ray.

We are heading back to NC tomorrow and feeling excited to be back home with Jim (and Howie). We have been here for over 2 weeks and have had such a good time. There is nothing like Maine in August - make the trip if you haven't :). Molly tried lobster for the first time and LOVES it. My Dad has a few lobster traps, so we were able to give it to her a couple of times for "free".

I contacted Montreal regarding Molly's Pamidronate and we are going to go back to give her the infusions every 3 months due to her increased pain and irritability in the past 3 weeks. Here's hoping it makes a difference.

We also ordered Molly her manual wheelchair today that will be size appropriate for school, and are VERY excited for her to get it. I think it will make a big difference in her independent mobility, especially when she has a broken leg.

We fly out tomorrow from Boston and will have to head down first thing in the morning to be sure we are at the airport nice and early. Signing off for the night. Thankfully Molly seems to be sleeping OK with Motrin and a splint (and a room air conditioner - lucky girl).

A Very Long Day

We arrived here in St. Louis on Thursday and things were going relatively well, considering Molly's arm fracture. We were having a good day on Friday, until Molly fractured her right Tibia. She was on the ground and suddenly we heard a sound and then a terrible cry. We had been on the phone with Dr. Esposito (the surgeon in Omaha) less than an hour before to discuss Molly's surgery and the recent Humerus fracture. We called him back with this new fracture and he called an orthopedist, Dr. Gordon, here in St. Louis and had us head over to have him splint it for us.

Dr. Gordon was very nice and seemed knowledgeable. He didn't think we needed to X-Ray it since we will be going to Omaha on Monday for surgery. He had them make a splint and warned us to watch for pressure sores. Pressure sores can form within hours and if she has one they won't be able to do the surgery on Monday. Those are very high stakes, so we will be trying to keep a close eye on things and hoping for the best.

We all had a fairly good sleep last night and Molly is in good spirits. She isn't mobile like she usually is and only has use of one arm, but she seems to be a "glass is half full" kind of girl and hasn't been complaining. It is amazing how she has figured out how to do things with just her one hand. I would have predicted that she would say "I need help" all the time and would be getting very frustrated, but so far so good.

I think we will take it easy today and hope to all get some needed rest and relaxation. We will be driving to Omaha tomorrow and then waking up nice and early on Monday for her surgery at 1:00 central time.