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. 

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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 :)

Infusion Number 3 in the Books

On Monday, Preferred Home Care called and asked if they could come on Tuesday to do Deena's next pamidronate (PAM) infusion.  Though it was short notice, it actually worked out well because we are heading out of town and I'm trying to get everything done before we leave.  The promised to be done in time for me to take Ramya to feeding therapy, so I agreed.  Of course that meant I was up until 2 am cleaning and sanitizing the house, but such is life (I keep my house picked up and clean, but probably go overboard for infusion days ;)).

Deena did totally amazing, as always.  The nurse was able to get the IV on the first try, plus I had numbed Deena's arm, so she didn't even flinch.  She's such a tough girl!  

We had a visitor that day, Madi's BFF Gloria, and the girls had fun homeschooling, playing, and watching movies while Deena was receiving  her infusion.  

I can't wait for her bones to keep getting stronger!  

2nd PAM Infusion Success

(This is another post to catch up)

Deena's 2nd Pamidronate (PAM) infusion went really, really well.  She was such a champ for the IV part and loved getting her infusion in-home.  Her nurse was really sweet and Deena loved that all her siblings were there with her.  I set up a table in front of the TV and we ate, watched movies, did crafts, and played with Legos while the infusion took place, which was over the span of 4 hours.  Deena said that Madi's doctors should come to the house too  I agree!  The next few days she was a little sleepy, but other than that, she didn't have any side effects. I'm so thankful we can start working toward strengthening her bones!

Busy, Busy, Busy Bees

As usual, we have been keeping ourselves quite busy.  We've had quite a few appointments and have found lots of fun things to keep us from betting bored.  I'll update with medical first, and then get to the fun stuff.

Medical Updates:

Ramya and Madi had their first appointments with our new orthopedic surgeon, Dr. Vincent.  Both girls are doing really well and nothing big is needed right now.  Ramya is due for a small wheelchair and HKFO (Leg braces that go up to the back) adjustment.  She hasn't grown much, but just enough to need a small tune-up.  Ultimately we think Ramya will be able to use AFOs to walk, but her strength, leg muscles, and confidence isn't quite there yet.  The doctor asked if I would like to put her in AFOs (for therapy) and start using those instead of the HKFOs.  My gut tells me she's not quite ready, though.   She still has some major fears of falling we are working through and she still fatigues very quickly, but I asked if we could go ahead and get AFOs to start working with, but also keep up with her HKFOs for now also, so that we have options with her mobility and therapy. He agreed, and I got her fitted a few weeks back so those should be ready any time now. 

Madi has grown right out of her HKFOs and we have decided to try RGOs (reciprocating gate orthotics).  They will be similar to the HKFOs but a bit heavier and more sturdy.  Because they are heavier they should give her more support and keep the metal from bowing so much.  We chose not to use them when she was little because she was so tiny and we didn't want to add any extra weight to her leg braces, but we are hoping this will actually give her more stability and help her with her walking now that she is bigger.  She also got fitted a few weeks back so we should be getting them pretty soon. We are very lucky that Ron, our favorite orthotics maker at Hangar in Phoenix, has a brother here that owns Hangar in Tucson.  We were able to get in to see him and I know he will do a great job with the girl's orthotics.

Madi has also grown out of her current wheelchair so we will start working on getting her a new one.  She needs something lighter weight that moves with her better, so I'm looking in to different chairs for her.  I would love to get her a Box chair, but insurance does not usually cover them. That doesn't mean I won't fight for it, though ;). 

The kiddos had dentist appointments to get their teeth cleaned.  The dentist just told me she doesn't think she can help Deena, though, because she thinks she will have to go under anesthesia in the hospital for her dental work (she has multiple rotten/broken teeth and her poor mouth is a mess), so we are searching for a new dentist for her.  Dental is hard with OI because it's hard to find a good dentist that has any experience with kiddos with OI.  I have a few calls in, so we shall see.  Ramya's little mouth is a mess too.  She holds food in her mouth, didn't have dental care before coming home, used to grind her teeth really bad when she was mad, had adult teeth come in without loosing the baby teeth, had her 11 year old molars come in when she was 8, and her mouth is very very crowded.  We already pulled the baby teeth since they weren't budging and they were causing her a lot of gum pain (the grown up teeth were pushing forward and the gums were getting pinched between the two sets).  Next up is dealing with a cavity she has, getting her sealants repaired, and getting her in to an orthodontist to see about expanders.  I realllly wish we had dental insurance right about now.

Ramya started vision therapy, so now both Ramya and Conner are in vision therapy on Wendesdays.  Conner finished his first 8 weeks and has made huge strides, but still is reversing a lot of his letters.  We start a new 8-week round with him this week.  Ramya needs intensive one-on-one therapy, versus Conner's group therapy, because having a lack of visual stimulation when she was tiny lead to eye muscles not coordinating and working together correctly.   Her homework right now is to watch a show on the computer using special red and green filters and special glasses.  When she's having a hard day, I put on a calming video with calming music from youtube and it not only helps her with her emotions but it also helps her eyes, so it works out great.  I have to say, I also really wish we had vision insurance. 

Tonight Preferred Homecare delivered the medication and supplies for Deena's first PAM infusion at home.  She will get them quarterly to help with her bone density.  We are so so excited to see her bones get stronger!  Her first infusion was supposed to be tomorrow but they had staffing issues, so it is now on Thursday.  I'm praying they get the IV in quickly, on the first try, and that she doesn't have any major side effects from the infusion. 

The Fun Stuff....

Now for the fun stuff!!  We tried wheelchair tennis with JAWS and the kids really loved it!  Soon they will change to wheelchair basketball and the kids are excited about that too.  Med students from UofA come and play with the kids, and siblings are allowed to use chairs and play too if they would like.  Conner was in Heaven and had so much fun using a sports wheelchair too. 

We had friends from Sweden visiting in the US and they were able to make a stop in Tucson to meet with us.  Their son, Arven, was in Ramya's second orphanage with her (Ashraya).  Though Ramya does not remember her time in that orphanage very much and did not remember Arven, it meant so much to her to have that connection and get to see him.   Ramya moved so often between being in 3 orphanages and in and out of the hospital during her time in India.  I'm not sure if she just doesn't remember a lot of what happened, or if she has blocked it out, but I know she really longs for connections.  She doesn't remember her friend's names from India and doesn't remember her caretakers, even when we show her photos.  She will tell me she misses her friends, and of course I tell her that it's ok to miss her friends and that I know they were very special to her.  She can't recall any of their names, though, and will tell me the names of friends she has heard Deena talk about, but ones I know for a fact she never met.  Having special visitors was just what she needed!  Now she has a friend she can talk about and remember.  Arven and Conner hit it off right away and Arven ended up staying the night even though the rest of the family stayed in a nearby hotel.  The boys had a blast playing Minecraft together and have decided that we will meet up in two years in Disneyland for more fun.

One of David's brothers and his wife were in Phoenix for 4th of July weekend.  We decided to make a trip down to Phoenix to visit and had a lot of fun swimming and BBQing with family.  We had a fire pit (oh man was it HOT!!!) and Deena enjoyed her first s'more.  Deena also loved her first fireworks and is still talking about it.

Other than that, we are doing some light homeschool activities this summer but are not doing our full curriculum.  The kids have been enjoying extra crafts and science experiments.  We have also been swimming a lot and are happy to have a pool at our rental house.  Deena is like a little fish and has really taken to the water!

(our light up fairy jars)

(bouncing bubbles from our Sick Science kit)

(pendulum painting from Kiwi Crate)

One a personal note...

On a more personal note, it hit me yesterday that I miss having my friends close.  A while back I realized that I wasn't invited to many girl functions any more.  Between our unpredictable schedule, just being plain tired and not always feeling up to socializing, that fact that I stink at initiating things when we are busy, and the fact that I never feel comfortable going very far from home (in case I need to get back quickly for an emergency), I realized I said "no" to a lot of things, and soon wasn't on the invite list.  It was a hard realization to come to (I wrote a post about it if you would like to read it), but it made me even more thankful for the amazing friends that we have who are always there for us.  We were blessed with friends we could invite over last minute, even if our house wasn't perfect.  We were blessed with friends who brought us meals after hospital stays.  We had some really close friends that eat like us, also homeschooled, and had kiddos that our kiddos loved to play with, that we saw often.  I had girlfriends that God had gifted the ability to know when I just needed to talk, needed coffee, or needed a hug, and would always call or show up at just the right time, without ever being asked.  I had some close girlfriends who also had kids with special needs and who totally got it.  We had an amazing Church and homeschool community we were plugged in to as well.   Though I'm so thankful to still be able to talk to my friends on the phone and to visit with them when we go back to Phoenix, I'm starting to feel the distance between us.  I don't have any friends that live close any more, so I have no one to go out with for girl time.  I know I will get there and just need to give it more time.  I was so blessed, and am still blessed, with some amazing relationships and it will always mean so much to me.  We have started to make connections with other families and have enjoyed playdates and social events, so we are thankful for that, and it definitely helps.  We also found a Church we really like, so that's been great.  I'm also thankful for Social Media because it helps me feel connected.  Oh, and I also was given a really sweet letter and giftcards from a neighbor we lived next to for many years growing up.  God knew I needed a little encouragement, and it really meant so much.  A little kindness can truly make a big impact in someone life!

  

I think that's about all I have for now!  Please be praying for Deena's upcoming infusion and I will try to update in a more timely manner about it.  Thank you for following along in our journey and for all of your love and support!