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Showing posts with label infusions. Show all posts
Showing posts with label infusions. Show all posts

Friday, January 27, 2017

One Giant Update with TONS of Pictures

We've been so busy, I'm not exactly sure where to start!  Instead of doing individual updates, I'll try to just do one big update, so bear with me!

In December we took the kids to the Moscow Ballet's Nutcracker.  I'm a huge fan of giving them as many experiences as I can, and was so glad we were able to go.  All the kids really loved it, especially the girls.  In hind-sight I should have told them the story before we got there, as there were no words so they were a bit confused, but they loved it anyhow.  It was fun dressing up fancy and going together. 




My aunt treated us to a bike ride to look at lights and that was a lot of fun.  The girls loved shouting "Merry Christmas" at everyone, and definitely spread Christmas cheer.  Conner had a lot of fun as well, and really loved the whole house decorated with cats. 




We also went to the Reed Park Zoo to look at their zoo lights display with another homeschooling family from our Church that we enjoy hanging out with (they have 3 boys, so Conner is in Heaven when we are with them).  The kids loved the lights, and Pokémon was by far Conner's favorite.  The girls preferred the carousel, though they loved the lights too.





The week before Christmas we did a quick turn-around trip to see my Nephew before Christmas.  We met him at the LEGOLAND Discovery center and tried that out for the first time.  They have a few rides, some guided builds, a 4D movie, as well as some free-build themed areas.  We had a lot of fun and I know we will be back. 






Deena loved her first Christmas home.  It was so full of excitement and wonder for her.  I loved watching her eyes light up with each tradition she participated in.  I made sure to order a few adoption and India ornaments for her so that she had ornaments on the tree as well.    She loved decorating the tree and also loved sitting by it.  She would carefully touch each ornament, and asking for the story behind them.


We went to Phoenix for Christmas this year, so we celebrated as a family early.  We totally blew the Christmas budget (like blasted it right out of the water....  thank goodness for Christmas sales) and got the girls each their own Fisher Price Wild Thing ride-on toy.  They are hand-powered and such fun toys.  They LOVE them!  The road by our house is very rough, so there's not much they are able to ride on out there, as it's too rough for wheelchairs or plasma cars.  They LOVE riding their bikes (now to get Deena one too!), but want to go far in them of course because they go FAST, so these give them something to play in the front yard with.  It works great on a bit of a rougher terrain so it's a great option for them.  Conner got a hoverboard for something to play outside with too.  They are the happiest kiddos on the block! They are also the only kiddos on the block, but I know they would be the happiest regardless.  Every time they are on them they just giggle and giggle.  It makes every penny worth it! 



We enjoyed our time in Phoenix with family and the kids loved celebrating Christmas so many times. 





Madi had a seizure after the holidays, which was a bummer.  We were hoping her new medication would stop her from having more.  When we had tested her levels, though, they were on the low side, so we increased her dosage with hopes that her seizures will finally be under control.  We took her to the ER after her seizure, just to be on the safe side, but thankfully she had come out of it at home with her rescue meds and oxygen.  She probably didn't need to go to the ER, but her teeth kept chattering and we wanted to be extra sure she was done seizing since we had maxed our her rescue med dosage at home.  We weren't there long, and she didn't need blood tests or anything, so that was good.  Once we got home she came down with a fever and threw up multiple times, so I think she was just coming down with the flu.  She doesn't normally have seizures with the flu, but she likes to keep us guessing :).  We are praying this is her last one!


On January 2nd we celebrated Deena's first year home.  She chose Indian food to celebrate and had requsted idli, which our normal go-to Indian restaurants don't carry.  Thanks to Google we found a great little family-owned restaurant/store with authentic food that makes both idli and dosa.  She was in Heaven and really enjoyed herself.  I can't believe she's already been home a year.  She has adjusted so well and is such a sweet, loving, and smart girl.  I'm so thankful that she is ours! 


Conner's birthday was a few days after Deena's adoption day.  We took the family to the Pima Air and Space Museum for a space shuttle model build, then went out to Oregano's pizza for some gluten-free yumminess.  He also had a friend spend the night and it was the perfect day.








Because the fun never ends, 3 days after Conner's birthday we celebrated Deena's 9th birthday.  This was her second birthday home, as she came home the day before her 8th birthday last year.  This year she was SO excited for her birthday.  She wanted to go back to the Indian food restaurant we had found, so back we went.  I think we have found her new favorite place for sure.  She ate idli, dosa, AND naan, in addition to sambar and chicken tikki masala.  She left with a big smile and a very full tummy. 



Deena had another PAM infusion, which she gets quarterly.  We are so thankful that she is able to get them in our home and that we have been blessed with amazing nurses who get her IV quickly.  She does so great with the infusions and we love that we can help make her bones a bit stronger.



I decided to take a day off of homeschooling and take the kids to the Children's Museum for a few hours since we hadn't been there yet.  A few hours turned in to the entire day, but they were having so much fun I didn't want to tear them away.  We went ahead and purchased a membership, since it was almost the cost as a one-day trip for us anyhow.  It's a small museum but it's not too far away and it's well done.  They are anxious to go back and play some more.









We had some good friends, the Thompsons, come visit and spend the night with us.  We have been missing our dinners and time with them and it was SO nice to relax and have their company.  The hardest thing about moving has been being away from friends and family.  It does all of our hearts good when we have company.  A few weeks later we had a visit from Kyla, our friend and unofficially adopted teenager (that's now an adult), who lived with us for a year before Ramya came home.  She is like family to us and the kiddos really loved having her here for a weekend.  I had told her if she came to visit I'd take her to get a few tattoos she's been wanting.  I decided to also get the one I have been wanting for a while.  We went to Jay at Sanctity tattoo, as he was recommended by the pastor of our Church and I know he does a great job.  I got "walk by faith" tattooed on my right foot.  I often think about how different our lives would have looked had we listened to what the world told us to do, instead of walking by faith and following God's plans for our family.  Our greatest blessings have come from stepping out in to the (often scary) unknown and trusting that God would see us through.  It's not an easy thing to do; something I fail at on a regular basis, but it's a blessed journey indeed.  I love how it came out, it's exactly what I was envisioning.






Conner and Deena wanted a combined friend party and asked to go to Build-a-Bear with their Tucson friends.  Since it's so costly there, it worked out great because it was less kiddos.  Costco also had a special around Christmas where you got $100 at Build-a-Bear for $70, so that came in handy.  All of the celebrations, combined with the cost of Deena's surgery and Christmas has been a LOT lately.  I'll gladly take any money off I can get!  Deena really enjoyed having a real party this year and was on cloud 9 the entire time.  Conner said it was his best birthday yet.  We also watched a Star Wars movie, ate pizza, and had ice cream sundaes.






Last week we had 3 appointments in Phoenix, so we also celebrated Conner, Deena, and my nephew's birthdays with family.  We just had a simple family lunch at the park, but it was fun.  My sister-in-law makes the most amazing cakes and the kids loved them.  We also had a piñata and, hey, who doesn't love a piñata?!?!?







Yesterday Deena's first new-to-her wheelchair came in.  She loves it!  Ramya's new Rifton Mobile stander also came in.  It's really big, but should fit her ok for now, and it gives her lots of room to grow.  It doesn't fit through some of our doorways in the house, which I hadn't though about, but it will work great for using during homeschool, in the kitchen, etc...  I love that the girls can be up and weight-bearing, but can also have independence and mobility.  Our Rifton mobile standers are probably one of my favorite pieces of equipment for the girls.  As an added bonus, Deena fits great in Ramya's old Rabbit stander, so all 3 girls will officially have a mobile stander to use. 



I think that's about it for the fun "stuff".  Other than that, we've been chugging along with our therapies and appointments.  We took a break from vision therapy because Ramya was too overloaded and needed a break.  We are still doing her exercises at home and are continuing to monitor her.  So far she is continuing to make improvements but has been less anxious, so that's been big.  Between too many therapies, the holidays, and Deena's surgery, she's been regressing and struggling a lot. We are trying to be very intentional about rocking her and spending time with her, and she also has an attachment therapist that's been helping us work through things.  She got to take a month off of feeding therapy because she was doing well, so that's HUGE!  She's regressed with her eating again, but not nearly like it was before, so we are thankful for those improvements.  She hasn't gained the weight she lost back, but she hasn't lost any more.  We also have a naturopathic doctor helping us with some natural supplements and things to help with her anxiety.  To celebrate her eating, the feeding therapist came to the house and we made brownies together.  She had fun and it was nice to have a positive celebration in relation to her eating, since it's been a struggle for her since, well, before she even came home.




As you can see, we have been crazy busy, which is why I haven't updated for a while.  We appreciate all of your support and prayers, and promise to try to be a little better with updates :)

Sunday, April 17, 2016

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!