Thursday, May 29, 2008

Ups and Downs

I just finished writing a post about how Molly improved and an hour later she woke up crying.  I went up and she complained that she hurt her arm and was crying.  This was almost too much for me to handle.  I rocked her and she calmed down.  When I stood up to take her downstairs she whimpered and said her arm hurt.  I brought her down and she begged me not to put her down because it would hurt.  I have learned that it is easier to keep her comfortable when she is sitting on her own and so I put her on her "Elmo couch".  I told her I was going to get her medicine and asked her if it hurt a lot or a little and she cried and said a lot.  It was devastating to hear her in so much pain.  She kept her arm limp at her side.  I asked her to point to where it hurt, but she wasn't willing (or able) to.  

I assumed the fracture was at the same spot as the fracture 9 weeks ago and so I put the splint on the upper arm to see if that made her any more comfortable.  She didn't seem much better or worse with it on.  Our wonderful neighbor, Lori, came over to play with her and read books, which helped raise both our spirits and Molly seemed to be doing well.  We decided to go and have an X-Ray taken just to be sure things were OK, since there isn't a rod in the arm.

It has been a long and emotional week and I hope that Molly has a better week next week.

An amazing recovery

I took the splint off on Tuesday morning to check for sores.  She screamed and begged for me not to touch it, but once I got it off she said it felt better and she didn't want a wrap on it - I was not prepared for that.  We went to the orthopedists Tuesday and had x-rays taken.  It seemed that it was a minor fracture since she was comfortable without the wrap on, but she wasn't able to pinpoint where the fracture was so we wanted to make sure it wasn't in her pelvis and that her rods were OK.  Nothing showed up on the x-ray, which isn't a surprise, but is a good sign that it is only a crack and not a big fracture.  We came home and she started crawling!  She asked "Is this OK?" and when I told her she could do whatever she wanted since she would know what hurts and what doesn't.  Well, she stood right up after hearing this!  This is what Dr. Esposito predicted, but of course I thought he was being far to optimistic.  I'm glad he was right.

Certain movements and especially twisting still cause her pain and unfortunately I haven't been able to predict what will hurt and what won't.  We went to PT today and she walked around quite a bit with her walker for the first time since Sunday.  She wasn't quite as fluid as on Sunday, but seemed to being amazingly well.

We are very excited.  Sesame Street Live is coming to town and we just got tickets for Saturday.  I think Molly is going to have a ball!! 

Sunday, May 25, 2008

Femur Fracture

Molly using her walker at a Hydroponic Farm in Cary:

Molly on her first ride-on toy, scaring Jim and I but having a ball :)

We have been having a wonderful week.  Molly stood on Monday for the first time since her surgery and immediately asked for her walker.  She walked all the way from the family room through the kitchen and into the playroom.  We had X-Rays taken on Tuesday and things looked good, so we were given the go-ahead to allow her to walk as long as it felt OK for her.  She has been walking really well and today at the pet store walked all around without any sign of the limp she had before the surgery.  We came home and she was playing at her plastic chairs and somehow she fell off the chair.  I was a foot away and when I bent down to pick her up she had one foot on the chair and the rest of her body on the floor.  The cry told us that she fractured, but we are still not 100% sure of the location of the fracture.  It seems it is in the left Femur (upper leg), but it is unclear whether the fracture is in the middle or higher up on the leg.  Our wonderful neighbor, Lori, came over to distract Molly and help us figure out where her leg hurt.  We made a splint out of fiberglass material we had in the house and it was a very traumatic experience for all.  She screamed in pain the whole time we were making it, but I knew she would hurt every time we had to move her if we didn't splint it.
The fracture happened around 1:00 and within a few hours she seemed a lot better.  She was afraid for me to pick her up for fear of it hurting, but with a lot of reassurance she let me pick her up and we went out to her power chair and went for a nice walk.  She didn't whimper when I picked her up, so I am hopeful that she is feeling better and that the splint is effectively bracing the fracture.
We emailed Dr. Esposito and have already heard back from him.  He thought that as long as she was comfortable it would be reasonable to wait and see and not go to the ER.  There is an after-hours urgent care place, but of course it is closed today and tomorrow.  Bummer.  Dr. Esposito said that most likely the rod would splint the fracture and that she would be feeling well enough to crawl in the next week or so, but we will have to wait and see.  There is a small chance that the rod could have bent because of the fracture, but as long as it is only minor the leg should heal and we won't have to rush back for another surgery - keep your fingers crossed. 
Jim and I are both feeling rather sad after having such a wonderful morning with her being so mobile and independent.  Molly has had to go a lot, but her spirits are very good and we are hoping she is able to get a good night's sleep despite the fracture.
Here are some videos of her doing well:

Sunday, May 18, 2008

Some New Photos...

Molly and I baked together for the first time.  We made banana bread and had a ball!

Molly was pretending she caught a bird and was offering it to Jim :)

Tripp got this shirt for Molly in Nicaragua (on the back it says para mi)

Molly's fried Livi came over to play and I braided her hair just like Molly's :)

Here is a video of Amanda (the 11 year old with OI) on the local news.  Don't worry, she is just acting and doesn't actually have an arm fracture :).

Thursday, May 15, 2008

Lots to do, but doing well

I have had a hard time finding time to get on the computer, but things are going well.  There has been a lot going on and it feels a bit overwhelming at times, but thankfully Molly is doing well and seems to be feeling well.

Dr. Esposito wants us to wait another week or two before we encourage her to start standing.  She seems ready and is doing a lot of walking in the hot tub.  

We are waiting to hear from Montreal Shriner's regarding Molly's application.  You have to be apply and have your case presented to the medical board in order to be accepted for treatment there.  We had expected to hear by now, but are hopeful that we will be able to schedule an appointment soon.

We are getting ready to have a meeting with the school system about enrolling her in a preschool with a school provided aide.  She is eager to be in a school environment, but needs a 1:1 aide, for obvious reasons.  I am nervous that this is going to be a long battle, but I hope to be surprised.  I am trying to research what is required in order for her to be eligible.  From what I have read thus far she should definitely be eligible and most of the other families I know of with kids with OI have had their children in public preschool with an aide - so keep your fingers crossed!!

We are also in the last stages of researching a lift for the van so that we can take her power chair with us outside of the neighborhood.   We have searched for resources to help pay for the lift, but thus far have not found any.  There is a $1,000 rebate for vehicles less than 6 months old, so we will at least have that money coming back to us, thanks to the warranty replacement of our Honda van.  

We are also beginning the process of applying to our medical insurance to get Molly's teeth capped.  Her teeth are wearing down fairly quickly and the dentist thinks it will be appropriate to cap them (an 8 hour surgery) in another 6 months or so.  Now, we have to battle with insurance to get it covered.

Molly is entertaining us by the minute with her sense of humor and sharp wit!  When I spell something for Jim,  Molly will ask "what did Mommy spell" which makes us all smile.  She is playing hide and seek a lot and is now hiding a toy in her hands, or her hands in a book and asks us to find it with a huge grin on her face.  She will say that "Daddy is such a good boy, I love him" and the same to me :).    She is also really enjoying pretending to be a princess and tells me I am the King.  We go "shopping" while in the hot tub and pick out imaginary crowns and magic wands (hers is of course Purple).  When I tell her she can't do something she will ask "why" and then say "talk to me" (which means explain it to me).

Livi came over for lunch today and the two of them were adorable playing together.  They really just love being together and it is adorable to watch.  Molly has a lot of work left to do as far as sharing goes, but she has gotten a lot better.

She has started asking us to tell her No and she laughs and goes on to the next thing and tells us to "tell me no" again and again.  At bedtime she told us to "tell me no napping" and we all laughed a told her, no we won't tell you no napping, it's bedtime.  Jim started carrying her up the stairs and our clever daughter said "tell me no going upstairs" she is very crafty!

Here are some videos: