Monday, January 28, 2008

More Mobile and Talkative Than Ever

Molly in her first "big girl" bathing suit:
Molly starts off with small intentional strokes with her brush...

But shortly realizes it is much more effective to smear it all around with her hands...

Molly climbed right into her toy basket and proceeded to call it her car

Molly has been walking a lot the past few days all around the house. She has been using our hands for support and walking from room to room, which is very different than in the past. Up to now in the house it has been a planned activity and generally she chose to crawl or be carried rather than walk. I don't know what has made the difference, but she seems to be doing well.

She has been a bit crabbier lately and complaining of pain in her legs, arms/hands and her cheeks (I think the cheek pain is her 2 year molars coming in). It is hard to figure out how much pain she is actually in. I am on edge again like I was before her last surgery. It is difficult knowing that she has a partially healed fracture in her left tibia and progressive bowing in both tibias, especially her right. She woke up crying several times in the night on Saturday night, so we gave her ibuprofen before bed last night, which seemed to help and she slept through the night. It is difficult knowing that she is in pain and also trying to determine what level this pain is at. I think as long as she is eating and sleeping we can assume it is under control for now.

We had water therapy today and she took several steps in the water without holding on to anything, which was a HUGE milestone. I think it was similar to when a parent sees their child take their first steps on land, but maybe even more special. She wore a new bathing suit with inflatable pillows on the front and back, which seemed to give her the ability to "swim" by herself by just holding on to a pool noodle. I noticed today that she has definitely grown quite a bit in the last month or two. She stood on the bench at the therapy pool and the water hit her quit a bit lower on her body. She is now wearing some 18-24 month shirts and 12-18 month pants! It is amazing to think she was in 3-6 month clothing this past summer!

We also got a new walker today (a hand-me-down from another patient of Molly's PT) and she said she liked her new walker and called it pretty and said it was fun! The front wheels swivel, which allows her to navigate around much more effectively. It is a lot riskier than the other walker, but also allows her to get where she wants to go.

My brother, Tripp, drove down from outside of Pittsburgh this weekend and Molly (and the rest of us) had a great visit. She was excited for him to play with her toys and showed him all around the house.

She is getting older by the minute and now really enjoys playing games. We often play "hide-n-seek", where we "hide" around the corner etc. She also likes "I Spy" and is now even trying to come up with her own things to spy. We came up with a new game this weekend where we hide a few toys and ask her to find them, she seems to think this is a lot of fun.

Now that Molly is 2 her infusions are pushed out to 3 months apart. Up until now they have been 2 months (6 weeks when she was quite young) apart. I am hoping that she does well with a longer period of time between treatments. The kids complain of bone pain, fatigue and increased fractures when they are getting close to their next treatment. We are hopeful that she will tolerate another month. She will have her port flushed on Friday and then her next infusion a month from then.

There is an OI conference this summer (August 1-3) held by the OIF in Washington and we are getting really excited to learn more and connect with families again. We had such a positive experience at the last conference in Omaha (2006). I hope get to see all of the same families again and hopefully meet some new ones. It will be interested to see how Molly reacts, but I'm sure she will LOVE seeing all of the kids.

Here is a video of Molly walking with her old walker.

Saturday, January 19, 2008

Hot Tub and Ortho Phone call

Molly is doing very well and coming up with new tricks by the day.

We bought a used hot tub for Molly's water therapy and it arrived on Wednesday. We have all been very excited for it to come and have really been enjoying it. There is a seat shallow enough for her to sit at and she can stand on the other seats. It seems like it is going to be perfect for her!!

I spoke with Dr. Esposito (the Orthopedic surgeon in Omaha) and we discussed the X-Rays we had taken in December. He thought that her femurs looked good. The FD rods are expanding nicely. The top of the rod is still extended beyond the bone and is in her bottom tissue, but she hasn't been complaining about it and he said that this was better than it being sucked up into the bone. Her tibias are bowed and the right more than the left, which we already knew. She has a partial "non-union" in her left tibia with some "bridging", which means that she had a fracture (I think from sometime around June) that has not completely healed. The "bridging" means that there has been some healing, but it should have been healed by now. She has not been complaining about pain in that leg, so hopefully it is not causing her a lot of discomfort. The right tibia is bowing and now it is just a wait and see as to when we re-rod her Tibias. It looks like she is big enough now to have the telescoping (F-D) rods in her Tibias, which should give her more time with the next set of rods. You need 4mm in the growth plate area and she is measuring at 6mm.

The plan now is to wait and see how she does. She is walking more, but she is also walking with more of a limp than before. As long as she is tolerating walking and weight bearing and she isn't complaining of pain and doesn't have a fracture we will hold off her surgery. He felt that we will be able to splint her if/when she fractures a Tibia and schedule surgery within a weeks time. It is hard for me to play this waiting game, but the longer we can wait before her next surgery the better things will be for her. He said that her bones looked much better and more normal than they did for her last surgery, which should make things a lot smoother for surgery.

I discussed my anxiety about going through the post-op recovery that we went through the last time and he felt that it would be a lot better this next time around. He can use a tourniquet to prevent the blood loss she had during the last surgery (because her femurs have rods), so she won't need a transfusion. It should also be better because there will be fewer osteotomies (bone cuts) and fewer bones involved. Molly had elevated PT/PTT blood test results (these have something to do with bleeding and clotting? I think) and therefore they were not able to give her an epidural for that initial recovery period, which would have been so helpful.

We need to be sure and have X-Rays taken from both the top and side view in the next 3-6 months in order to better determine how her Tibias look and to help Dr. Esposito come up with a plan. I hope that we get to the point that we decide to schedule these X-Rays and don't have to go in because of pain she is having.

Dr. Esposito also asked how her arms were. This is the first time that has come up. It makes me a bit anxious to think that we might also have to address fractures and rods in her arms. We will have to keep our fingers crossed that we are lucky enough to avoid this completely - I can wish at least :). He said that you can rod the Humerus (upper arm), but there aren't rods that are particularly effective for the lower arm. It sounds like a lot of the arm complications occur after an arm fracture. When the arm heals and there is a bow, it will simply get worse from there or can have non-union complications etc.

I am sure I will remember more from my discussion with Dr. Esposito. I'm glad to have that all down on "paper" for our records :).

Here are a couple of videos...
Molly in her new hot tub CLICK HERE (poor quality, sorry)

Molly says "Cockadoodledoo" CLICK HERE

"I put ketchup on my sandwich, it tastes good"
"I sit HERE" as she pushed the foam out of the way that I had placed there to prevent her from sitting there. This is one determined little girl!

"Daddy toot...pfffft (her sound affect)"

"My name is Lisa" (and holds her hand out to shake hands)
"My name is (Mommy, Daddy, etc."
"Call Livie...(on plastic phone)... Hi Livie, come to my house and play with toys"

Sunday, January 13, 2008

Molly is 2!!!

It is hard to believe Molly is already 2!! We had a wonderful day today. She was happy and active all day. She is talking more by the minute and was extremely happy to have all of her friends here to celebrate.

It was emotional leading up to her birthday and thinking back to when she was born and all that we went through, but I didn't find myself thinking about any of that today.

She has been doing more and more standing without holding on and here is a video of her showing off her new trick CLICK HERE.

Sunday, January 06, 2008

Sorry for the break in postings, but things have been hectic around the holidays. Molly is doing well and keeping us very busy.

We had a wonderful trip to Maine and a great Christmas with my family. Molly loved their cat (Tony) and seemed excited by the snow. We bundled her up to play in the snow and she was interested at first, then I made the mistake of sitting her in the snow at which point she announced "I need to poop" and we headed in. My parents have a hot tub and we were in it everyday. She seemed to feel better and have more energy after she got out.

She amazed us with her ability to remember names and she loved wishing people "Merry Christmas" by name.

We drove down to Massachusetts for a night to see my Mom's extended family and had a nice visit with everyone. We visited old co-workers on the way back to Maine, which was a nice bonus to our trip.

We were happy to get back home after a ten day trip.

We picked up her new power chair the Wednesday before we left and finally got to let her drive it when we got back. She took to it relatively quickly and is now asking to go out and drive it (or "turn" as she says). She really goes in whatever direction she wants and is doing a fairly good job of listening when we say "stop". We had our scariest incident happen this evening. She was driving down the ramp outside and one of the wheels clipped the railing at the end and spun her a round and the railing came within a couple inches from her face. We feel EXTREMELY fortunate that this ended as well as it did. Thankfully, she wasn't shaken by the incident and happily drove all over the neighborhood.

We still have not figured out the best kind of lift to get the chair in and out of the van, so we haven't been able to take the chair out and about but hopefully we will have it figured out soon.

Molly's talking is improving by leaps and bounds. She is now stringing 3 and 4 words together and saying more and more.