Catching up on Posts, but a Prayer Request First

I'm sitting down for the first time in.... months :).  Ok, not really, but sometimes it does feel like that.  I finally have a few moments to update the blog, but first I have a prayer request.

As we speak, Deena is in surgery to rod her right femur and her right tibia.  We knew that this day was coming, but we wanted to wait and let her get some of her PAM infusions before rodding.  When we checked her right femur last, it was evident that the time had come.  They rodded her right femur in India with what we believe is a generic Fassier-Duval rod.  The rod may not have ever been put in correctly, and also did not deploy correctly.  Because of this, the rod is positioned badly and is protruding from the bone.    The bone has also curved around below where the rod has slipped up. 

Deena is in surgery to remove her old rod and put in a brand-name FD rod correctly.  We will also rod her fibia, which is also very curved and weak, since she will be under for her femur, and it will save her a surgery in the future.  A representative from the company that manufactures the FD rod will be in her surgery as well, which is pretty cool.

Dr. Vincent is her orthopedic surgeon here in Tucson.  He used to work at Shriners and has a lot of experience with kiddos with OI.  He's an amazing doctor and we are thankful she is in such good hands!  We also found out he lives in the neighborhood we are renting in, which is fun.  It's nice to know he is so close in case of an emergency.  That's been one thing that has been hard for me.  In Phoenix, I always had people to call if I had an emergency and needed back-up for my other kiddos.  Our rental house is close to David's work, so he is able to get home quickly if we need him, but Sundays are hard.  David plays drums in the worship band at Church twice a month, but our Church changed locations and is now about 35 minutes away.  If we have an emergency on a Sunday morning he plays, I'm not sure what we would do, because he can't make it back home quick enough.  We love our Church, though, and the kids have made a lot of friends there, so we don't want to uproot them again.  Dr. Vincent's wife said if we have an emergency, we can call them and they can be at our house in about 4 minutes.  Knowing that has given me so much peace and for that I am very grateful! 

Anyhow, back to surgery updates.  I woke up this morning at 4 am so that we could get to the hospital at 5:30 for check-in.  I'm not a huge fan of being up before the sun, but we made it!  Dr. Vincent said the surgery should take about 5 hours, so for now we wait.  The tricky part will be getting out her old rod, since we aren't exactly sure what is in there right now and it's positioned incorrectly.  They found an anesthesiologist that let me gown up go back with her and talk to her while she fell asleep.  I love getting to be there while they drift off.  They said they will get me while she is waking up too, so that she wakes up to me being there.  Her anesthesiologist has been wonderful so far and I will definitely be requesting her in the future.

I'll update more once they come and update me.  Thanks for keeping our sweet girl in your prayers!

Deena's First Orthopedic Surgeon Appointment

Last week Deena had her first appointment with the orthopedic surgeon.  After she came home with a fracture, I realized how important it is going to be for us to have an orthopedic surgeon close by that was a good fit for her.  I called our orthopedic surgeon in Phoenix, Dr. Goggins, and asked who he recommended here in Tucson.  He recommended Dr. Vincent  and we saw him last week. I am happy to report that we loved him!  He was very pro-walking, had great bedside manner, took his time talking to us and answering questions, and has other kiddos he sees with osteogenisis imperfecta (OI).  I also talked to him a bit on his approach with kiddos that have spina bifida and liked his answers.  I think I will be switching all my girls to him.

(In the waiting room)

 



Dr. Vincent recommended removing Deena's cast (she had accidently peed on it so we were planning on getting a new one), x-raying her to see where she was at with bone healing, and then re-casting or splinting once we saw how she was doing.  The x-ray looked pretty good and there is quite a bit of new bone growth.  He said we could splint or even keep the cast off all together, depending on what I wanted.  Because we are all still getting used to how to handle Deena, I decided a splint was the way to go.  That way she would have the support, but also a little more freedom and movement.  So far it has worked out really well for her. 

(Deena "helping")

 

We spent some time talking about our long-term goals for Deena.  Right now the plan is to go in again in two weeks and check how her bone is healing.  We will also discuss a plan of action for rodding surgery at that time.  She had two femur rods inserted in India.  They had decided she was doing well, though, and removed one of the rods.  Apparently once you insert rods it changes the way the bone grows, so removing them is not a good option.  Basically once you are rodded, you are often rodded for life he said.  The other rod is not in quite right, but it's also not terrible, so he recommends leaving it for right now and then modifying it in the future.  She will also need tibia rods. He wants me to research a bit on the types of rods, how the surgery is typically performed, and decide how many bones we want to rod at once.  He does not recommend rodding the femur and tibias at the same time, because he said there is a settling period after surgery.  He said we could either do one tibia at a time, and then the femur, or go ahead and do both tibias at once, wait a bit, and then do at least the one femur if not both.  He explained to me how he performs the surgery, what the typical hospital stay looks like, what to expect, and all of that good stuff.  He also said he believes Deena has OI type 3. 


I can tell that Deena is already feeling better because she wants to be up walking constantly.  Right now I just hold her, but I would like to get a walker for her soon.  The walkers my other girls use are a little big and bulky for her, so I would like to get her something different.  I am still working on getting her approved for insurance, though, so it will be a little while.  Until then, our days look like this...

 

 

 

In other news, Deena has officially started homeschooling and is doing well.  She has a pretty good attention span and enjoys doing her work.  I am starting her off very slowly, but for now, it's nice to be in a routine again.

 

 

 

 

 

Deena is really sweet and keeps us laughing.  She has so much personality!  She loves singing and dancing, which Madi is really enjoying.  She is doing well expressing her needs and her emotions, which I am thankful for.  She loves snuggling and is a momma's girl for sure.  She is such a blessing!