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!

A Few Quick Updates Because SO Much is Happening

I just realized it's been quite a while since I have updated on how life is going.  There's a lot to share, so I think I'll break it down by kiddo to make it easier.  

Madi:

On Monday Madi saw a new neurologist in Tucson.  So far I think I like him, we shall see.  He wants to do a sleep-deprived EEG and see how her neurons are firing and all of that good stuff.  Her appointment is in in May and the goal is to limit her sleep as much as we can for one day (4-5 hours if possible) so they can get the best EEG readings.  She can't have caffeine before the test, but you can bet I'll have quite a bit!!  After the test he wants to discuss possibly changing her medication or combining two medications to try and get her seizures more under control.  She doesn't have them often, but when she does they are big and require a lot of intervention.  

Madi and Ramya's new DDD coordinator came out today and we really liked her.  She had read our blog and was excited to meet the girls.  She gave me a list of occupational, physical, and speech therapists in Tucson so that I can start calling around and find services for both girls.  That's my next job over the next few weeks.  

Other than that, Madi has been talking about wanting to be on stage again, so I need to start looking for a place in Tucson that offers dance or plays she can participate in.


Ramya:

A friend who was adopting from India at the same time we were shared that her daughter tested positive for E Pylori.  I read about it and decided I should have Deena and Ramya tested.  I asked their pediatrician if we could run the test and he agreed.  Deena's test came back negative, but Ramya's came back positive.  The doctor said treating it likely won't make any short-term changes, but that we should treat it to make sure she doesn't get ulcers or have issues in the future.  Reading online I found that it's not usually symptomatic, however, when it is the symptoms (according to Dr. Google ;)) can include:

• excessive burping
• feeling bloated
• nasea or vomiting
• lack of appetite or anorexia
• unexplained weight loss

It may be nothing, but I'm hoping treating her may help bring up her appetite and weight.  We have had swallow studies, feeding evaluations, parasite tests, etc... and never came back with any answers as to why she may struggling with having a desire to eat and poor weight gain.  Everyone tells me it is emotional, which is one reason why we were having attachment therapy.  I'm praying that this may may provide some answers for us and help make her healthier.  The initial treatment would be 4 weeks and then we would re-test and see how she is doing.

Deena:

A few weeks back Deena had her first "incident" since being home.  The kiddos were riding their plasma cars and Ramya slammed in to Deena, causing Deena's leg to hit the wall.  She started crying and telling me "mom, so much pain!".  It was so sad!  I splinted her right away and then she felt a ton better.  After that her leg only hurt if it moved in a funny way, and she really didn't complain about it any more.  I took her back to the orthopedic surgeon who thinks it may been a new break.  Looking at her x-ray from December in India, though, she had a break in the spot already that she had come home with.  The pediatrician thinks she just re-injured the existing break, but our next follow up with the orthopedic surgeon isn't until next week so I am not sure his opinion yet.  He wasn't looking at the old x-ray to compare the new x-ray to, so I plan to bring that for him.  Either way she said it doesn't hurt anymore and she has been putting weight on it again, so that's great!

Last week we drove in to Phoenix and Deena had her first appointment with our pediatrician.  He had told us she would always be in pain, and was pleasantly surprised to see her so happy and doing well.  She charmed him with her silliness and I could tell he thought she was pretty special (which of course she is!).  

Deena sees our endocrinologist later this month so we can start her infusions.  We are also starting the discussion of rodding surgery and we are praying about which doctor to use for the surgery and the best type of surgery for her.  

Deena still is not on our insurance.  I was told we were approved and in the final stages of rate determination, and then haven't heard back.  I need to call again and hope she will be on soon.  I also applied for CRS (children's rehabilitative services) for her to help with doctor's bills in the meantime.  Hopefully we will hear back from both soon.  The orthopedic surgeon wrote her a prescription for a wheelchair.  We do not want to start the process, though, until she is on our insurance.  We saved Madi's last wheelchair for Deena, though, so once we have a big enough vehicle, she can start using that while we wait.

Conner:

Poor Conner was sick last weekend; the sickest I have every seen him.  I started dosing him up with elderberry, vitamin C, zinc, and garlic.  He threw up twice on Saturday and didn't feel well.  He slept most of the day on Sunday, had a low-grade fever, and kept complaining of pressure behind his eyes.  I planned to take him to the pediatrician on Monday but he woke up his normal energetic self and I was so thankful! 

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In other news, Athletes Helping Athletes not only gifted Madi and Ramya AMAZING hand cycles, but they also asked to feature them in their promotional materials this year.  Of course we said yes!  Monday we had their program manager, photographer, videographer, and assistants here.  It was SO much fun!!  More to come on that later, though, because I really wanted to dedicate an entire post to our day and their organization.  

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Our house finally sold and closed this Thursday.  We both have mixed emotions about the sale, but are thankful that we are all in one place now and that all of our "stuff" is finally in one place as well.  It was stressful having it pending, going back and forth so much between Tucson and Phoenix, and then packing it up with 4 kids in tow, so we are glad to move past that phase of our lives.

 When we initially put the house up for sale we had dreams of renting for a while, saving, and then being able to build the girls an accessible house.  Plans changed when David's boss asked us to relocate, our adoption finally went through, and the house took longer to sell than anticipated.  Now we are here in Tucson and both our house and lot are sold.  We are working hard on trusting that God has a plan, though, and are looking forward to watching it unfold.  David is enjoying working closely with his boss and feels like it was a good move for him, which I am thankful for.  We are also VERY excited to be able to get a bigger vehicle so that Deena can start using a wheelchair.  I think the plan right now is to look for a conversion van with double opening doors that will fit all the kiddos and the three chairs.  We are hoping to find something soon!

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I think those are all of the "big" updates for now.  Deena is such a sweet girl and is adjusting remarkably well.  She went with David to pick up coffee the other day, which was her first trip away without momma.  She was very proud of herself and her time with David.  It was so sweet!  She kept talking about how funny daddy is, and all the silly animal noises he makes.  

We are blessed indeed!!

Lego Kidfest was a BLAST!

Friday we went to Lego Kidfest and the kids had so much fun!  The girls really loved the Lego Friends and Lego Princess activities and the boys loved the Starwars exhibit and Bionicle exhibit.  Everyone loved the HUGE pile of bricks, of course!  They also had 4 different activities where you got a free small Lego set for participating.  We did 3 of the 4 activities and the kiddos were really excited to come home with 3 new sets.  Here are some pictures from our night, and a few video's Madi made after the photos...

 

 

Madi also wanted to make a few videos to show everyone what Lego Kidfest was like.  The baboon one is my favorite (listen to the end).....

 



 

 

 

 

We Started Therapeutic Riding, Hurray!

Last week we started the girls in a therapeutic riding program for kiddos with special needs through A Stable Influence.  The girls LOVE it and are so excited to tell everyone that they rode horses. They also ask every day if it's their riding day. 

While the girls are on the horses they have them ride forward, backward, and sideways to strengthen different core muscles.  They also ride with just a pad, not a saddle, so that they can feel the horse's gait better, which will in turn hopefully help them with their walking gait in their leg braces.  It's also great practice for Ramya to work on sitting back on her booty and having good posture.  The program is run by one lady and a bunch of volunteers so there are no therapist costs, like in hippotherapy, which is nice.  

Here are a few pictures of the girl's first day.  I couldn't get any great ones of Ramya because she wanted me to stay by her and hold her leg the whole time, so I did.  Next time maybe David and I will switch girls (if Ramya allows ;)) and then I can take a few better photos of Ramya.  Ramya has a huge fear of falling, and was hesitant to que the horse to walk, but did great once the horse started walking and she realized she would not fall.  She death-gripped the pad and wouldn't let go, but she did it!  I know each week she will get even more confident and I'm excited to watch her build her strength, endurance, and confidence.  Conner isn't in therapeutic riding but enjoys shoveling poop and helping his sisters to earn free rides in between kiddos :).