Tuesday, February 26, 2008

Molly's X-Rays Today

We had a very busy day today. We had 4 women here from Early Intervention to put Molly through some diagnostic testing. We are trying to apply for services for Molly in hopes of getting both some in-home help as well as an Aide for Preschool. They had a psychologist, pediatrician and PT here to test her. She tested above average for language, just below age level for fine motor and at an 11 month level for gross motor.

I was starting to question whether I jumped the gun and scheduled her surgery sooner than I should have. Today she complained of pain in her left leg and then pointed right where the non-union (unhealed fracture) was. Well, we had X-Rays taken today and both the Tibia and Fibula (two lower-leg bones) have unhealed fractures. Poor thing.

She did amazingly well during her X-Rays. She didn't cry at all and stayed still while they took the films. It is amazing how far she has come at such a young age.

We have scheduled her surgery in Omaha for March 24th. I am now feeling thankful that it is as soon as it is. Her spirits continue to be good.

Top View X-Rays, the leg on the left (with my finger) is her right leg:

Side view (again, her right leg is on the left in the picture). You can see fractures of both bones on her left leg (right in the picture). Click on the picture to see a larger view:

Thursday, February 21, 2008

Doing well, but Scheduling Surgery

Wow, I didn't realize it had been so long since I last posted. We are all doing well. Molly has been talking more and walking a lot lately. We have noticed that she has been limping more. I had assumed she was limping because of increasing bowing in her right Tibia, but upon further observation it is the left leg that is bothering her. We had X-rays taken in December and Dr. Esposito noted that she has a non-union (a fracture that has not healed completely) in that leg. She has started complaining of pain in that leg and pointing to the spot with the fracture.

I emailed Dr. Esposito today and he called us back this evening - what an amazing doctor. He said that if the leg is starting to bother her so much that we should have some X-Rays taken and try and schedule the surgery when his schedule allows. I know that this is the right thing to do, but it is terrifying to prepare to go through that process with her again. He said if it is hurting her more and more that there is a good chance that it will fracture completely if we don't do surgery. So... I think she will have surgery on her two tibias in the next month or two. Yuck.

Molly and I were at Lowe's today getting a part for the shower and she was in her wheelchair - doing amazingly well navigating all around. A woman in her 60's came up to talk to Molly and said that kids with special challenges have a special place in her heart. She shared that she had a baby with a congenital heart defect that only lived 3 months. I asked if she had any other children and she said the doctors wouldn't let her have any more children due to her diabetes. It gave me a whole new perspective on how parents cope with their children's diagnoses. Given the choice between a child with a profound disability and no child at all, I think most people would choose to have a child with a disability. I know we all learn to appreciate what we have, but I was having a hard time imagining how parents cope with their severely disabled children. Speaking with this woman gave me a new appreciation as well as respect for families with disabled children.

We have had a good few weeks. Molly has been having some temper tantrums, which are scary at times. She is quite dramatic and she and I are sometimes battling over her daily routine. We went to a book store last week and they had someone in a Clifford costume, which was quite traumatic for Molly. She waved at him very energetically, but didn't want to get to close and was terrified to be closer than 20 feet away. She has told the story over and over of seeing him and does so with an almost manic demeanor. Her eyes start to bulge and she speaks rather quickly, recounting that she waved to Clifford and said "Hi Clifford", but she didn't touch him and his tail "wagged back and forth". She tells the story over and over and it is adorable!

Here's a picture of Molly talking about Clifford's tail:

My Mom was in town last week and Molly and I got some well needed time apart. I also got to go to the NC beach on Monday and Tuesday to spend a couple of nights with a group of women. It was so nice to go to a different location. The weather was gorgeous and I loved listening to the waves and breathing some of that wonderful salt air.

Tuesday, February 05, 2008

Sweetest Little Girl

I was feeling sad last night and Molly came over and said "Hold You" and then said "No cry Mommy" and "Mommy OK". It was the sweetest, cutest thing I have ever seen. She is so sensitive and is such a sweet little girl. It is one of those moments I hope to never forget.

I am having some difficulty trying to figure out how much I should be medicating her. She has been complaining of pain now and again in her legs, but also says things like "Howie Hurt Me" when sometimes he isn't even in the same room. She has been much better since receiving her Pamidronate on Friday, but still doesn't quite seem herself. She has had a cold for a while and it may just be that she isn't feeling well, but I always worry that she has pain that is not being treated.

We are starting to look at preschools for Molly for the Fall. She loves kids and it has been difficult finding opportunities for her to safely interact with her peers. We have found 1 preschool that is willing to take her and has even helped us find someone interested in being her 1:1 aide. The only down side is that we will have to pay out of pocket for the aide as well as the school. At least we have found a place willing to take her and willing to adapt the classroom to better suit her needs!

Saturday, February 02, 2008

Infusion #14

Molly climbed inside of Tripp's laundry basket and we just had to take a picture...

What? Do I have something on my face?

Molly and Livie enjoying a meal side by side :) They were passing food and utensils back and forth - adorable...

Oops. I was talking with "Dr. Mary" on Thursday (she has a daughter and an adopted son with OI and also is an ER doctor) and telling her how Molly has seemed fussy and complaining of pain. She informed me that we shouldn't be pushing the doses farther apart until we increase the dose she receives. Thank goodness she told us! I called the home infusion company immediately and they overnighted us her medication and the nurse squeezed us in to her schedule on Friday. We went and had her weighed (the medication is dosed based on body weight) and she weighed in at 22 lbs and 15 oz (10.4 kg). She has grown quite a lot. We need to start measuring her height to get a better sense of how much she has grown.

I am feeling quite frustrated that we aren't getting more guidance from the doctors in Omaha regarding her Pamidronate Infusions. I had the pediatrician's office fax all of her recent infusion results to Omaha for the new doctor, Dr. Lutz ("Lootz"), to look over. I received a phone call from someone named "Rose" from Omaha who said she looked over her lab results and her Calcium levels looked fine and that was all they were concerned about. This is not at all what I was hoping to get back from them. We will set up an appointment to see Dr. Lutz whenever we go out for Molly's surgery, but I was hoping he could be a bit more helpful in the meantime. Thanks goodness for Dr. Mary.

Molly has a cold that still seems to be hanging on and is running a little bit of a temperature. We were supposed to go to a birthday party, but opted not to in case there is more to her fever than just a cold.

She is starting to say some very funny things and is often talking in sentences. "Put the diaper on my body", and today she started saying "I disappear" (copying Jim) as she would hide around the corner - very cute.

Her spirits seemed better even half way through her infusion yesterday, but is continuing to be a bit whiny. It is hard to know how much of this is age and how much of this is because she doesn't feel well due to the cold and how much of this is due to bone pain.

Molly walked all around the hot tub yesterday and then took many steps without holding on to anything! She has started saying "I do it myself" a lot more and "Look at me Mommy" when she has done something on her own, so working on her independence is a new priority.

We went to an open house at a local preschool on Thursday night and really liked it. Molly loved seeing the classrooms and walked all around. Everything was at a great height. They even had these VERY tiny little table and chairs that were small enough for her to sit in all by herself, which she loved.

We are in the midst of trying to figure out what services will be available here in Wake county and what we will be responsible for on our own. There are some public preschools in the area, but from what I have gathered so far they are a special needs environment and not an inclusive environment, which is not acceptable to us. I am beginning the process of trying to find out about PT, OT, a 1:1 aide etc. and also which of these services would be able to travel to her private preschool.