Wednesday, May 30, 2007

Some Ups and Some Downs

Molly is doing very well and seems to be getting better with each day. Today for the first time she transitioned from sitting to crawling on her belly without any assistance - a big milestone for us! She also started trying to put some weight onto her left leg (her good leg) while on all fours. She has been crawling with her left leg and dragging her right to get herself a few feet at a time, but has been getting rather frustrated by her difficulty moving. She seems to be doing better and better and I'm sure will be back to crawling in no time.

They came to do her infusion here at the house on Sunday, but the orders weren't right, so we had to postpone. They came and flushed her port on Tuesday for the first time and that also went well. She has to have her port (an IV access that is a "button" under the skin) flushed every four weeks to prevent a clot from blocking it off. We somehow lost track of time and it had been 6 weeks by the time the nurse came. I was anxious to see how it went and was relieved when it went so well. The nurse said it was well placed and easy to access :). In the next several months she will train me on how to flush it and then I will be able to do this part on my own.

I emailed Dr. Plotkin, the endocrinologist in Omaha, to clarify Molly's Pamidronate orders since they weren't correct. He wrote back with the information we needed and also shared that he is moving to the east coast and will no longer be seeing OI patients. We are CRUSHED to say the least. It has been an emotional few days trying to think about who we will turn to now when questions and complications arise. He is an AMAZING and very bright doctor. He is wonderful to work with and clearly has his patients best interest in mind. We had been searching for a doctor that we respected and could count on for good advice regarding Molly's overall care and finally found that in Dr. Plotkin. The protocol he has designed seems to be a perfect fit for Molly and now we are not sure how to proceed. He is the only one in the country that uses this protocol and we are not sure if someone else is going to adopt it or not.

There are only 3 centers of excellence for OI care in all of North America: Omaha, Maryland (Kennedy Krieger), and Montreal Shriner's. We have already gone to KKI (Kennedy Krieger Institute in Maryland) and did not feel it was a good match for us. We h started the application process for Montreal, but put it on hold once we found we were happy with the care in Omaha. I think we will now have to reapply to Montreal, but they require that you see a local Shriner's Hospital first and do not accept all OI applicants. As of March we finally felt like we had someone to turn to when issues came up. I am overwhelmed to be losing this short-lived peace of mind.

The clinic in Omaha is going to continue to run, so we will at least still have Dr. Esposito (the surgeon) for that aspect of Molly's care. Thank goodness for that! I can't imagine having a better experience with any doctor than we had with Dr. Esposito before, during and after Molly's surgery.

The Home Infusion company says that they have new and corrected orders for Molly's Pamidronate, so we have tentatively scheduled Molly's infusion for next Friday. I am hopeful that things will go smoothly and that this will be a much better option for all of us than going to the hospital over night every 8 weeks.

New Videos:
Molly uses Maracas for the first time CLICK HERE
Molly draws a picture CLICK HERE

Thursday, May 24, 2007

A Good Report From Dr. Esposito

Dr. Esposito called last night to discuss Molly's X-Rays. He thought that everything looked like it was healing nicely and seemed happy with her progress.

She is starting to crawl with her left leg, but not her right, so she is doing a combination of dragging herself and crawling. She has only moved a few feet up to this point, but I think she is going to begin to be more and more mobile in the coming days.

We are supposed to let her do things at her own pace as far as position and mobility at this point. He felt that she would be feeling a lot better closer to the 8 week point.

Her right leg isn't able to completely straighten at this point, so we are going to talk to the PT and OT about making a straight splint to put her leg in to help stretch her muscles and ligaments.

There are 3 new videos that Jim took while I was away.

Here is a video of Molly wanting to be tickled CLICK HERE

Video 2 is of Molly talking CLICK HERE

The last video is of Molly getting the hang of her Star Car CLICK HERE

Wednesday, May 23, 2007

A Wonderful Husband and Father

Molly is doing very well.

I drove to CT on Saturday and left Molly for the first time. I headed out before she woke up and I thought I would fall apart when I left, but I guess I was ready because I felt fine heading out on the road.

Molly and Jim had a great 4 days of bonding and she didn't seem to notice or care that I wasn't there, which was good. It is nice to know that I can go somewhere again and she will adjust to the situation without any problems. Jim did a wonderful job and took care of all of the aspects of Molly's care like a pro. I am so lucky to have such a wonderful husband that can take care of both Molly and I so well. I think they both had some great bonding time and I know I benefited greatly from my time away.

I had a great time in CT with my whole family to celebrate my Grandparent's 60th wedding anniversary. It was good to see everyone and it was nice not having to worry about anyone but myself for a little while. I also visited my friend Bobbi and got to meet their new little boy, Logan, who is 7 weeks old as well as visit with their 3 year old Sam.

I drove back yesterday and was worried about how Molly would respond when she saw me. I have heard that sometimes kids will give you the cold shoulder after you have been gone for a while, but fortunately Molly was happy to see me and let me pick her right up.

Molly is still not crawling. We are waiting for Dr. Esposito, her surgeon, to receive her recent X-Rays so that we can talk about how she is doing. We're not sure if she isn't crawling because something is bothering her, or whether it is just going to take her some time to become mobile again. Her right leg still seems to be her weaker leg at this point. Last night she tried to crawl forward a few inches, but would only get up on to her left leg. We will wait to talk to Dr. Esposito to figure out what is going on there. Jim and I are still trying to prepare ourselves that there is a chance that Molly simply won't be able to stand. Her right leg is a bit shorter and still has some bowing, so we will just have to see how things go as she continues to heal and gets stronger.

There is a new video of Molly on the microphone toy

Amanda (our 10 year old neighbor with Type III OI) came over while I was away to play with Molly and they seemed to have a blast together. Amanda is wearing a "Wee Walker" because of 2 Tibia fractures. She and Molly seem to have a special bond and we are fortunate to have them so close by.

Wednesday, May 16, 2007

Splint Free and Loving It!!

We went to see our local orthopedist yesterday and they took some x-rays. He said that what Dr. Esposito accomplished was no easy task and thought that she was healing nicely. He didn't think the splints were necessary any longer and we were very happy to hear that! She hasn't had the splints on since yesterday afternoon and seems to be doing quite well.

We went and saw her PT this morning and she also thought that she is doing remarkably well for all that her legs have been through. We need to work on straightening her right knee and start encouraging her to reach over her legs and work towards crawling again!!

I put her in the "Star Car" (by Tash for those that might need one) today and she moved herself about 3 feet, which I thought was a big accomplishment. She doesn't love using it and would prefer that I bring her whatever it is she wants, but we will be working on getting her to start moving and getting things for herself as much as we can.

She has been trying to copy words that we say and we have been having a fun back and forth with different words. They don't sound exactly like the word we say, but she is getting there. Here is a video of her trying to say"Hi There" CLICK HERE I am hoping we will have more of these videos with better accuracy on her part in the coming days.

I am going to go on my first overnight trip away from Molly this weekend. It is my grandparent's 60th wedding anniversary and the family is having a big celebration in CT on Sunday. I am excited to have a break, but nervous to be so far away. I am sure that she will be fine and she and Jim will have a great time together, but I am terrified nonetheless. I am planning on driving up on Saturday (a 9 hour drive) and then driving home on Tuesday. YIKES!!

I am looking forward to a few days away. I know that usually the parent's worry and the kids do fine, I'm just hoping that will be the case for Molly. I haven't ever been away from her for more than 12 hours and this will be a big jump.

I feel so fortunate to have Jim not only willing to take on this big responsibility, but also encouraging me to go and even convinced me to return on Tuesday instead of Monday! Molly and I are very lucky girls to have such a great Dad/husband.

Friday, May 11, 2007

Lots of Good Stuff

I am very excited... we went to our PT today for the first time in months and had a great visit. She was happy with Molly's current range of motion, which is a relief. She also found a stander (a big piece of equipment) that is small enough for her. We have to wait for the x-rays to give it a try, but it looks like it will work well. It will be nice to be able to borrow this big and expensive piece of equipment rather than having to fight with our insurance to get her this $1200+ thing that we won't need for that long of a period.

They also had a pre-wheelchair called a "Star Car" that we had tried her in months ago and was laughably too big for her. We put her in it today and she was pushing herself forward (only a few inches) within a few minutes. This was a huge accomplishment in my eyes!! She hasn't been mobile in almost 2 months, so this could be a great tool for her at the moment - hooray! They are letting us borrow it and we now have it at the house!! I can't wait to get her into it tomorrow. We will be sure to take picture and videos to share with you.

I also noticed a new "trick" of hers while we were there... The phone kept ringing in the room and I noticed that she kept putting her hand up to her ear. After about the 3rd time I was sure she was pretending to answer the phone - too funny!! Who knows if she has been doing this at home without me noticing, but I definitely noticed it there today :).

This has been a GREAT day with big steps forward for Molly - HOORAY!

Our Little Houdini

Look Ma, no splint!

Jim went in to get Molly this morning to find her "snuggling" with one of her splints. She managed to get it off completely in tact. We have no idea how she managed this feat, but she seemed quite proud of herself!

She seems to be feeling better than ever with or without her splints on. We will be going in for X-Rays next week to look for callous formation at all of the fracture sites. If things look good we might be going to smaller splints, or no splints at all!!

Saturday, May 05, 2007

Molly's X-Rays

Here are copies of Molly's X-Rays before and after surgery. Quite a difference! Sorry if this is too much info for some of you out there, but we thought many of you would appreciate seeing the transformation.

Here is the before X-Ray (you can click on the picture to make it bigger):

Here is an X-Ray with the rods (you can click on the picture to make it bigger):

Dr. Esposito, the surgeon, broke her right femur (pictured on your left) in 3 places and the Tibia in one. He broke her left femur in two places and broke both the Tibia in two places and Fibula in one (shin bones). In hindsight, Dr. Esposito wishes that he had broken the Fibula on the right leg as well. You can see that it is bowing and will pull on the rod a bit. He said it was not worth going back in to correct. The rods in her Tibias will probably only last 12-18 months, so whatever he didn't correct this time he will the next go around. It is certainly worlds better than it was before surgery.

We will be going on for follow-up X-Rays locally in less than 2 weeks to see how she is healing.

Friday, May 04, 2007

The Process Continues

Molly is doing better each and every day. She is now moving both legs well. She can lift them all the way to a perpendicular while on her back. She is rolling (some), but still isn't mobile in anyway. I am hoping that she will begin to work on crawling, but that might take a bit more healing time. We shall see.

She has a small pressure sore forming on her right leg. It doesn't look like much right now, but I'm hoping to minimize it as best I can and hopefully prevent it from getting worse.

I gave her a bath yesterday that went well until I picked her up. I don't know whether the towel was the problem or something else, but it was difficult to hear her cry in pain. I know that all we can do is try and minimize her pain to the best of our ability, but it is still difficult to hear her cry in pain, especially while I am the one doing something with her. I know that some of her crying is just because she is a normal kid and that she gets fussy like all kids do, but it is hard to separate when she is being fussy from when she is hurting. There are certainly times when I know it is one or the other, but there are lots of other times that I just don't know what the problem is.

She is getting more and more "talkative" by the minute babbling at her toys etc. It is absolutely adorable! She is gushing with personality. She is a fun little kid and I am enjoying this new means of interaction.

We have less than 2 weeks until her X-Rays and hopefully it will be soon after that that we will be able to take off the splints - HOORAY!! I take them off a couple of times a day to work a little on moving her knee and foot around and that has been going well with not a lot of complaint. She also doesn't complain when I put them back on, so my guess is that she still is liking having them on. She is quite good at letting us know what she does and doesn't like (in her own way), so I'm sure she will let me know when she doesn't want the splints on anymore :).

On another note, a family that adopted a little boy with severe OI has been nominated for an Extreme Home Makeover with ABC. If you have a moment to sign the petition I know that the family would greatly appreciate it. We met this little boy and his family at the conference. He is 7 and has at least as much personality as Molly. He is happy most of the time and has been through a lot. He fractures every month still and has a lot of deformity. He has been nominated by Easter Seals to transform their home so that Jake has some independence. The adoptive family has had him since he was less than a month old and already had 6 grown children of their own. Here is the link CLICK HERE to sign the petition It really is an easy form to complete (30-60 seconds).