Our Prep Week

Hi everyone!!

Welcome to Annabelle’s Journey Blog! I am using this as a means to keep everyone updated on her progress as well as a way for Annabelle to look back on her journey. 

Annabelle was born with a moderate Congenital Femur Deficiency (CFD) and a mild tibial hemimeilia  on her right leg. She was diagnosed when she was two and up until this point we have just been monitoring her progress. As of September 2021 her leg discrepancy was 4.54cm and her projected discrepancy at maturity is between 7-8cm. This means she will need leg lengthening to add growth to her smaller leg. Without this she will have significant back, hip and leg pain.  She currently wears a lift on her right shoe to add height and help balance her out and she has done really well with it. 

Annabelle is an amazing kid. A firecracker full of personality and a whole lot of love. She is an amazing sister to big brother Cameron and little sister Fiona. She is so good  at independent play - constantly dressing up her babies or playing princess with her costumes. She shares my love of Halloween and a day doesn’t go by where she doesn’t talk about what she’s going to dress up as- each day changing her costume idea. She has enjoyed school and loves to update me on events that have happened during the day. 

 In the past it hasn’t seemed that her little leg has slowed her down at all but as of recently she is more frequently reporting pain- this is most evident during her high impact activities such as hockey. 

A little over a week ago we received a phone call that SickKids had two cancellations and they were able to get Annabelle in for surgery on April 4th. This gave us less than two weeks to prepare.  We have waited a VERY long time for this surgery. This phone call obviously comes with a lot of mixed emotions.  Happiness that we are finally having the surgery and a whole lot of anxiety. Annabelle will be having a SUPERhip surgery which essentially is a preparatory surgery for her leg lengthening. I cannot state enough how INCREDIBLY lucky we are to have Dr. Simon Kelly as our surgeon. He is a leader in the field and we are very fortunate that he is so close to us. Families come from all of the country to see him. 

During this surgery Annabelle’s right hip - which was underdeveloped at birth- will be reconstructed. Her iliotibial band or IT band will also be removed as well as some other tendons. Again this is all to prep for lengthening of her femur in the upcoming years. The rotation of the hip and the ball and socket of the hip need to be just right so when the femur is lengthen it doesn’t snap. The IT band is a very tight band running from the hip to the knee and can also cause the femur to break when lengthening which is why it is removed. Annabelle will be in a spica cast from her chest all the way down her right leg in order for her hip to heal. This is a big surgery and will take around 5 hours to complete.

This week we having been isolating as a family to ensure Annabelle is completely healthy for Monday as the surgery would be cancelled if Annabelle had any congestion, common cold or illness. We have become pros at family isolation due to the last two years of frequent covid isolation and this week has brought back some serious flashbacks!!!! I have had a wonderful week with the kids as they have been so good and we are really soaking up some fun times before things get harder next week.

We haven’t told Annabelle about her upcoming surgery but are planning to do so tomorrow. My amazing friend Heather is a child life specialist and made up a wonderful package for us to help prep Annabelle without actually telling her about her operation.  We have been reading many books on hospital visits and what to expect when someone has an operation. We have also been doing alot of medical play with her dolls. We don’t want to tell Annabelle too early as this will obviously cause some anxiety. 

Tomorrow we are off to SickKids to get Annabelle’s covid test and then return home for the weekend. We head to SickKids Sunday night as we have to be at the anaesthesia clinic at 6am in prep for our 8am surgery start. Thank you to all who have sent supportive texts, phone calls and words of encouragement during this week. A big thanks goes to my colleagues in Audiology and my clinical manager who were so supportive and helpful with me stopping work so abruptly. My work family is amazing and I’m so incredibly grateful to have them. 

We are also very grateful to the Dumont family. Lisa reached out to me from a Facebook group I posted in over two years ago. Their daughter Addison has almost exactly the same condition as Annabelle but on her left leg and is 20 months older than Annabelle. They are a WONDERFUL family and have provided us with so much valuable information. Information we would never be able to get anywhere else. They also provide us with a car seat harness and bean bag chairs, clothes and a complete instruction manual for all of our upcoming appointments and surgeries. Lisa keeps a blog for Addie which has been a wonderful resource for us.  

Below is a picture of the girls from 2020 at Safari Niagara 

I will be posting as much as I can these up coming weeks to keep you all in the loop! Please send your prayers and positive thoughts our way Monday morning!! 

Below are some pictures from our week at home.