Straight as Straight can be

Deena got her splint off and her leg looks AMAZING!  She was so excited to see how straight it was; we all were!  

The three things she was really missing were baths, using her own wheelchair (she was in a transport chair with an elevating leg rest), and wearing pants.  The first thing she did when she came home was take a bath.  I'm pretty sure she played in there for an hour.  She was on cloud 9!  

Deena is officially cleared for weight bearing as she feels able.  She's been up for short periods of time and has remained pain-free.  It's going to take a little time to regain her strength, but she's going great.  

Other than that, life's been chugging along.  We've had company 3 weekends in a row, which was nice.  Though we've made some great friends in Tucson, the kids have been missing their Phoenix friends.  They enjoyed all the extra time with some of their best friends.  

The weather has cooled down a bit and we are loving the time outdoors.  Deena was grated a bike through Athletes Helping Athletes (more on that to come), so we are officially able to bike ride as a family, which is amazing!  

Deena just got her latest round of pamidronate and is doing great, with minimal side-effects.  She gets stronger and stronger every day.  We have a great nurse through Preferred who lets Deena help, which we are thankful for.  Deena wants to be a vet when she grows up, and I can totally see it.  She's such a smart girl!

Oh, and a few weeks back there were therapy ponies at the Children's Clinic.  Not only did the girls get to lead them around, but the ponies also wore tiny build-a-bear sparkly pink shoes.  It really doesn't get any better than that.  Life is good and we are so incredibly blessed!

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!

A Quick Deena Update

Saturday, the day after Deena's surgery, she was pretty tired and puffy still.  She stayed awake most of the day, wanting to spend time with her siblings and dad, but you could tell she wasn't feeling amazing.

We talked about doing a blood transfusion because her levels were still on the lower side.  The doctor left it up to me to chose, so I asked to give her another day and see how she did.  He agreed so I just watched her closely.  She only needed oral pain medication; she's so tough!  Physical therapy came and evaluated her and then we ordered a temporary wheelchair with elevating leg lifts, which came in late Saturday night.  Other than Deena feeling well, it was the big "thing" she needed to be able and go home when she was ready.  I always appreciate being prepared to discharge and not having anything holding you up!  I also realized her leg wasn't going to fit in her carseat, so David ran to grab a high-back booster from our friends.   

By Sunday, Deena was a different kid.  She was more awake, talkative, and energetic.  She wanted to take a walk and go to the Playroom, did lots of crafts, her appetite was up, her swelling was down, and she was very eager to get home.  We were discharged Sunday and she was SO excited to be heading home.

Deena has been doing well since coming home.  She is taking her oral pain meds, but has minimal pain when she is on them.  She isn't waking up and asking for medicine, so I can tell she is feeling better.  She's also been more active and I've already reminded her that she just had surgery and should take it a little easy.  She does still have a temperature of about 99 degrees, so I'm keeping an eye on that (she's had a higher temp since surgery).  The doctor put her on iron to help rebuild her system, and I've doubled her Juice Plus supplements to help her heal. 

Deena is doing well in the booster seat.  I rolled a small blanket to go under her cast and that seems to keep the pressure off well.  We were able to take a small trip Tuesday to eat lunch with my brother, since we haven't seen him for a bit, and she did great with no pain.  It was good to hug him and spend time with him, and Deena enjoyed some down-time in the car to play I-pad. 

Deena's Spica-type splint will stay on for about 3 1/2 -4 weeks.  The orthopedic surgeon is going to help me undo it all in his office after that and see how she is doing and healing.  At that point, he will determine what kind of splints she will go in to, and for how long.  If she's doing well, I may be able to remove those temporarily to bathe her, and then put them back on.  For now, though, it's sponge baths and hair washing in the sink.  I can't wait to see how straight her legs are. 

I think that's about it for now!  Thanks for all of the prayers for our sweet, strong girl.  We really appreciate them!

Surgery is Over and Went Great

Whew! It's been a long day!  Surgery started right around 8 this morning and we finally got a call at 1:40 saying that surgery was done, she did really well, they were splinting her up, and then the doctor would be out to talk to me.  Dr. Vincent came shortly to talk to me about how surgery went.  He brought me her old rod from India, which was really interesting to see/have.  It's a generic steel rod that was supposed to be telescopic like the FD rod.  Basically, the tip on the part that goes up into the other rod portion was bent so it wasn't deploying correctly.  He had to make a cut in the bone to get the rod out, but was able to fully remove it. 

The new rods are in both her femur and her tibia and are positioned perfectly.  She has a removable spica cast on, which we won't remove for quite some time.  It's nice, though, because when she is ready to bathe I can unwrap it, bathe her, and then re-wrap it. 

After Dr. Vincent left (to do another surgery and then see patients... I don't know how he does it.  He's amazing!) the anesthesiologist came out to talk to me.  She was given a block, aka a kid's version of an epidural, and her pain was managed well.  They did intubate her, which they told me they would before surgery, just because of how long surgery was going to be.  She wanted her to be able to take some deep breaths and felt it would be best for her.  Everything went great as far as that goes.  Deena did have some blood loss, but her blood test came back ok, so she did not need a transfusion.  We will watch her closely for the rest of the day and give her one if needed, but as of right now, she is seeming ok.  The anesthesiologist gave me a hug and then told me they would be out to bring me back.

Waiting is SO hard but I finally got the call that they were grabbing me and then bringing us to a room.  Deena has been sleeping pretty much since she got out of surgery, waking up just long enough to wiggle her toes for them.  She also threw up a little bit, so they gave her zofran.  The plan is to let her sleep as much as she needs and they are doing a good job not disturbing her.  She is on a regular diet so she can eat and drink whenever she is ready, though we will take it slow since she had a tummy ache. 

Thank you for keeping us in your thoughts and prayers.  I'm praying her pain is able to be managed well and she can bounce back quickly.  She's so tough and resilient.  She's pretty darn amazing!

 

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!