Saturday, March 27, 2010

Healing, "beaching" and now in Maine

Molly is one amazing little girl.  We found out that one of her top front teeth that was white had the face of it fall off.  We went to the dentist on Thursday and she sat perfectly still while he used some tools to put a new plastic face on it and cured it with a "magic" light wand.  What a mature 4 year old :).

Since we were missing school anyway we decided to head to the beach to visit our friend Dr. Mary and her two girls (Alexi, 7 has OI, and Aubrey, 10 no OI).  On the drive down Molly complained about her splint itching and hurting.  When we stopped and took it off she had new sores forming and we had to keep the splint off.  Molly was adamant that we put it back on, but given the way her leg was looking this was not an option.  We got there by 2 on Thursday and got right out on the sand and Molly searched for shells and played with the girls while Dr. Mary and I visited.  She was doing amazingly well without her splint on and was bending it and moving about fairly well.  It was so nice to be on the beach and to have some time to visit with another "OI Mom".

We headed home on Friday afternoon and arrived back in Raleigh in time to have dinner and begin packing.  We got on a plane this morning to head to Maine and Molly was a great traveler.  This evening she decided her leg was feeling good enough to try standing and stood at least partially on her right leg and thought it felt good.  After a second or two she had had enough, but that is a great sign for the days to come.  I had debated bringing her walker up to Maine and decided it was too much to try and carry around - ugh, now she is already wanting to stand... Maybe I'll be able to find someone with a walker up here she can borrow???

It is nice when the biggest "problem" is that Molly is healing faster than expected :)

Tomorrow is Maple Sugar Fest here in Maine and we are going to go and visit a farm to learn all about it.

Friday, March 19, 2010

An interesting Video

Here is a short video by National Geographic about OI.  The boy in the video, Jake, has severe OI and was recently on Extreme Home Makeover.

Click Here to watch the short video.

Thursday, March 18, 2010

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.

Tuesday, March 16, 2010

Already back at school!

It has been a long few days. Molly and I walked to school yesterday to visit for snack time and it really seemed to lift her spirits and get her back in the swing of things. She was able to go in for the full (8-11) day today.

Molly has some remarkable strengths that are really starting to develop - one of which is recovering quickly for big fractures. She told me today that she likes flowers as much as I like babies... communicating with analogies is something my family did ad nauseam and something Jim and I have made a regular habit out of and now Molly is following suit. She has been interested in a particular Richard Scarry Busytown book about Huckle having an operation and visiting the hospital. She can now "read" the book cover to cover with only a few cues to start off a paragraph here and there! I have video taped her reading it, but it is 8 minutes long, so we'll see if Jim gets it posted or not. After reading it she asked Jim to ask her the definition of relieved and then went on to give him a correct definition - too funny.

Sunday, March 14, 2010

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