Tuesday, April 27, 2010

"The Best Day Ever"

Molly got glasses on Friday!  She picked them out herself (pink) and as we drove in the driveway she said "I can see the house so much clearer!... This is the BEST day ever."  What a wonderful thing to hear!  They clearly are helping a lot because she hasn't asked to take them off at all and reminds us as soon as she wakes up.

We have planted a garden together and things are starting to sprout.  I think at this point she isn't that interested, but I'm hoping once things are ready to pick she will get excited again.  We planted corn, which I've never planted before, tomatoes, tomatillos, green beans, cucumbers, pumpkins and watermelon.  Can't wait to have some things to harvest!

We are starting to get excited about the OI conference in July in Portland, OR.  I am working on possibly getting the splinting guy from Maine to come and present at the conference.  I am also trying to come up with some ideas for sports and field day options that we could either demonstrate or at least have in printed form for parents.

I am also trying to create a "summer camp" for Molly.  I have a couple of other families interested and it will probably be at my house.  I think the camp will only be one step above a play date, but I think we could have some fun doing some science and arts and crafts activities etc.

Wednesday, April 07, 2010

Happy To Be Home :)

We had a wonderful trip to Maine and Massachusetts, but we are VERY happy to be home.  Ten days is a long time to be away from home and without Jim.

She is already starting to feel better and slept without the splint on :)

So nice to have good news.

Monday, April 05, 2010

A New Fracture

Sometimes having OI just SUCKS.  Poor Molly.

She has been doing so well and her spirits have been up.  After we spent the morning at the splinting office Molly said "I hope I don't break another bone, but I might"... it is hard hearing about the reality of OI from her perspective.

She was sitting on my Mom's lap and just started crying out in pain.  I was visiting my grandmother and rushed home to help out.  She told me she was crying because she was tired and there wasn't any owie.  It was clear that was not the case, but Molly really wanted to wish away her fracture.  Heartbreaking.

She finally let me put a splint on and admitted that it felt better with it on.  She told my Mom she wanted it off tomorrow (we're flying back to North Carolina tomorrow and I think she wanted it off to see her Dad).  It is so hard that she beginning to understand that this will prolong the time in a splint and not allow her to walk and stand like she would like to.  Oh how I wish I could make this better for her.

It is heartbreaking to know that your child is in pain and it is heartbreaking as Molly slowly learns the realities of having Brittle Bones.

Thank goodness she is such a wonderful kid with a great outlook and disposition.  She is interested in so much and has done such a wonderful job appreciating all of the good in life.

It will be wonderful to be back home!

Friday, April 02, 2010

Healing and keeping busy

We have had a few very busy days here in Maine.  Molly is doing well and is exhausted by the end of the day!!

On Thursday morning we went to meet with a family friend at an orthopedic office.  David Gallant, is an OTC (orthopedic technologist).  I made an appointment to learn some splinting techniques and get some new materials to try for making splints for Molly.  We got there at 8:30 and thought we would be there for about an hour... 3 hours later... I learned a ton and I am hoping to get him to come to the OI Conference in July to demonstrate some new techniques and materials - we shall see.

We spent the first hour talking about the material (polyester rather than fiberglass) that is breathable, can be cut with scissors, can be laundered and is more flexible yet still supportive.  We used his "model" (a Woody Doll - from Toy Story) to make an arm splint and then talked a lot about the different techniques for different parts of the body.  Molly was there an up until this point had been visiting with my parents.  I wanted to try making my splint and thought it would be helpful to make a femur splint for Molly that would help if and when she breaks her femur again.  Molly got the bribe of a lollipop and was amazingly cooperative while I made a two part splint that went up to her rib cage.  This was a traumatic experience for both of us.  It was like telling your 4 year old... I'm going to make a straight jacket for you, but once it's finished I will take it off but first I need to sew it on to you.  Tears occasionally streamed down her cheek while I was doing this for over 30 minutes.  I was able to stop now and then to comfort her, but it was emotionally draining given that this was for "just in case" and Molly only somewhat understood what was happening.

Needless to say that after all of that we headed straight to the toy store!

Today we went to a park and then over to the Maine Maritime Research Institute to see the fish tank and learn about fish.  They had one cylindrical tank filled with lobsters that Molly was interested in (at first), but then wanted to see more.  They told us that the rest of the fish on site were dead and she quickly said "I want to see some dead fish please"... OK they said and upstairs we went.  The found a wonderful master's student to bring us into the lab and she got to measure and touch a dead (and frozen) herring.  She was interested and not grossed out in the least!  Pete (the master's student) suggested that they use some tools (scissors and tweezers) to remove the fishes eye.  Molly thought this was a great idea and began picking out the dead, frozen fishes eye with the tweezers!  It sure seems that she has the makings of a scientist or doctor :)

She was also interested in cutting the fishes tail off and then she and Pete dug the spinal cord out of the fish and "studied it"!!  What an interesting morning :)

Off to bed - Happy Easter Everyone :)