A Quick Deena Update

Deena's surgery went well, and we are so thankful!!  It ended up being right about 3 hours, which was a little longer than I expected.  Her orthopedic surgeon spent a little extra time making sure her rod was in just right, so it was a good reason for it to run over. 

We were able to get the anesthesiologist we love, and we were grateful for that.  She's wonderful with Deena and has been there for most recent surgeries, including her dental surgery.  She lets me go in and sing Deena to sleep, which we really appreciate.  I missed so much in her early years, and it means a lot to be able to be there for her now.

The rod looks great and she is healing really quickly.  We were in the hospital for about 24 hours, but Deena was anxious to get home and did much better once we were discharged and she could be with the rest of the family.  

The kiddos wanted to paint rocks to give to our neighbors and it was the perfect down-town activity for Deena.  We left them by our mailboxes and all of our rocks found new homes.  Some of our neighbors even wrote the kids "thank you" notes, which was really sweet.  The kids really enjoyed it.

We also got out on Monday to view the eclipse.  We made viewing boxes and had a lot of fun learning about the eclipse.

We're back to homeschooling and getting back in our groove again.  It feels good to be all moved in, settled, and getting back in to a routine.  Life is good!

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!

Lots of Updates from our Casa

I can't believe how long it's been since I've been on to update.  Life just flies by!  One of my goals lately is to take care of myself in small ways, so I have been using the treadmill again at night.  It's a great way to reduce stress and I love it, but it also leaves me less time at night to accomplish things.  After using the treadmill and doing house work I pretty much fall in to bed, but it's worth it!

The last month has been busy.  We are loving going new places in Tucson and have been spending a lot of time outside enjoying the weather.  We've been meeting new friends and having play dates, which is always nice.  We've also had some trips to Phoenix, appointments, and things like that.

The Tucson Air Show

The Desert Museum

Family pampering day.... Deena's first manicure at a shop and Conner's first pedicure

Last month when we were in Phoenix for Easter we also saw the endocrinologist.  She submitted all of the paperwork to start Deena on her PAM infusions (osteoporosis medicine via IV to help with bone density) and Ramya also got her quarterly Lupron Depot Pediatric injection.  We are keeping our endo in Phoenix, even though it will mean a quarterly drive, because OI (osteogenisis imperfect) is her passion, and you just don't replace a doctor like that! 

While we were in Phoenix we also celebrated Ramya's birthday with family.  She requested a party with just family, so that's what she got!!  Since we don't have a house in Phoenix any more we had the party at the park.  She wanted a princess theme and Indian food.  It was a lot of fun!

Madi and Ramya had their yearly renal ultrasounds and appointments with their urologist.  Both the girl's kidneys look great and we don't go back for another year!  Yeah!  Since we had to drive to Phoenix for the appointment, we decided to take advantage of our drive home to go to the ostrich farm.  David met us there since it's only 40 minutes away from where we live.  The kids had SO much fun.  I think we will make it a tradition!

Deena has exciting news; she got her ears pierced!  She has been wanting them since before she came home, but we wanted to wait until we could take her, and also until she was ready to let me clean them and take care of them.  She did amazing and she is so proud!

In not-so-fun news, sweet Deena was in the hospital with a fractured femur on Monday.  After leaving the teaching store, David bent down to lift her out of her stroller.  She must have leaned forward and she just kind of rolled forward out of the stroller (David said like a little ball).  He tried to catch her but she was in a slippery princess dress and he couldn't get her in time.  The stroller is very low to the ground and has no bars on the front, which I purposely purchased so that we wouldn't bump her legs getting her in or out, so she didn't fall far, and she didn't hit anything, but somehow she fell just right and ended up with a fracture.  David said one leg went behind the other and then she sat on the ground, so we think it was just from the pressure of one leg on the other.   It was terrible even though it was an accident.   It's her first big injury for her since coming home, and we all felt awful, but especially David.  We try so hard to lift her carefully, always give her support, and make sure she's safe, but one of the hard things about OI is that fractures are a part of life, and sometimes it's the smallest things that cause breaks. 

Her left femur used to have a rod in it, because it broke frequently, but right before coming home they took it out.  You never take rods out once a child/adult is rodded though, because the bones are thinner there after having the rods to support them.  Unfortunately, though, they did remove it, and we had been planning to place it back in this summer.

Although it was an awful and unfortunate accident, there were definitely some good things that came out of all of it.

1. Her orthopedic surgeon, who worked at Shriners for 11 years and has lots of experience with OI, PAM treatments, and rodding surgeries, was on call the night we went in to the ER.  He saw her name come up and stayed 2 hours after he was off to be able to review her x-rays.  After reviewing her x-rays the initial plan was to set the bone and then admit us for a night pain management.  After talking, however, we decided to go ahead and use that time to put the rod back in, since we had to be admitted anyhow.  His schedule the next day was pretty full, though (so full that he already had to plan to delay another surgery because he just couldn't fit it in), and he didn't want us to be sitting in the hospital, so he asked if we were ok with just doing the surgery right then.  We said yes, he left to prep, and we went off to surgery prep.  It was getting late so David took the other kiddos home to bed and I stayed with Deena.  They took her back right about 10:15ish. It was a quiet night and I was the only person sitting and waiting in the waiting area.  It gave me time to go through all her medical files again and begin writing down the dates of all of her breaks and procedures so that we could get a better picture of her past medical history. Just after 12:00am the doctor came to talk and said everything went really well.  He got the rod in just how he wanted it.  He left and then they brought me back to be with her.  She was sleepy and slept most of the time.  It took a while for us to get a room, but at about 2:30am we went up and got settled in.  Thankfully Deena slept through it all. I was exhausted, but nothing a little coffee couldn't fix!  The next morning when she woke up she was doing a ton better and said she wasn't in pain.  We kept on top of her pain meds to make sure she stayed comfortable, and she handled it amazingly!
2. I talked with Dr. Vincent and asked if we could do her first PAM infusion while we were in the hospital.  The first infusion is done in the hospital, and then the rest at home.  Since we were going to be there anyway, it made sense to go ahead and start.  Dr. Vincent actually had her infusion paperwork with him, because he brought it so he could ask about the steps to starting it while he was at the hospital.  It worked out great because they were able to start working on getting it in the pharmacy and approved through insurance.  They weren't able to get it all done Tuesday, but Wednesday they were able to give her first infusion before they discharged us. She handled the infusion well and so far hasn't had any side effects.
3. Another blessing out of all of this is the time it gave Deena and I to continue to work on bonding.  I know that she realized the difference it made having her momma there with her.  She told me she loved me more times in a day than I have ever heard before and wanted to hold my hand and have me play with her hair.  Though being in the hospital and surgeries are no fun, it reiterated for her that I love her and I am here for her.  She didn't have to go through the pain alone and she had me right there to help her and advocate for her.
4. They didn't have to remove her earrings for surgery.  This might sound minor but she was SO proud of them and was devastated when they said they may have to take them out.  They were able to cover and tape them instead, and I am so thankful!  Sometimes it's the little things that make a big difference for a child when they are going through major medical stuff. 

My sleepy little warrior princess

She was SO excited for visitors! 

We made great friends with Child Life and love all the fun stuff they brought us to do

They ordered a wheelchair for her to use at home/out-and-about so we could keep her leg elevated

Reunited and it feels so good!

We have been home since Wednesday evening and Deena is doing remarkable!  She was SO excited to leave the hospital.  It was hard on her having the rest of the family away, though they did come visit, and she kept asking me when we could go home.  Her eyes lit up and she got super excited when I told her they were sending us home. 

Deena is already back to her spunky self, her appetite is great, and she seems to be healing well.  We have a follow-up appointment with the orthopedic surgeon in 4 weeks and we will take x-rays at that time to check how her healing is going.   She was getting restless and kept asking to go in the car, so we ventured out to Costco on Friday and she was very excited!

We also went to Church today and she enjoyed getting out and being around other people.  We still bring her in to service with us anyhow, so I wasn't worried about safety.  She enjoyed singing and cuddle time on my lap.

In other news, we found an occupational therapists and are excited to get back in to the swing of things.  Apparently finding in-home therapists, especially speech and PT, is insanely hard in Tucson. I have spent endless hours on the phone calling companies and trying to find openings.  I've even called outpatient therapy centers and everywhere has a wait.  I'm not going to give up, and we are glad to at least be able to start with OT. 

Oh, I also forgot to update and say that Deena is officially on our primary insurance!  Yeah!!  We have already met her $2,500 yearly deductible (it's per person), and I am so so so thankful we got her on in time for the surgery and hospital stay.  Our bills may still not be pretty but it will make an enormous difference.  On top of that, they added her at the rate they would add any child, even though I disclosed that she has OI.  That right there is an amazing blessing!

I think that's all of our big updates for now.  We are on the hunt for a bigger vehicle still, and I think we have decided on a Ford Transit with a turney seat for Madi.  She's a little over 80 pounds now, so this will help immensely with transfers in and out of the car.  Please be praying that we find just the right car for our family.  We have such unique circumstances it's been very difficult to figure out what will work for our family.

For those of you who are friends with me on Facebook, or who knew we were in the hospital, thank you for praying for our sweet girl and for checking in.  God has been taking care of us in big ways, and we are so thankful!

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!