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Monday, July 11, 2016

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!

Monday, June 20, 2016

Minecraft News by Conner

(Conner wanted to write a post on Minecraft, so I said he could.  Here is what he thought everyone should know about Minecraft ;))

I'm a fan of Minecraft so if you want to watch Minecraft videos then type Little Kelly in to YouTube. It is so so cool.  Download Minecraft by typing 'Minecraft' in the App store.  It is like real life so yes it so cool.  Download it now!  I hope you have fun playing minecraft!!!!!

Sunday, June 19, 2016

Our Visit to Roadrunner Sports

The girls are SO excited about their debut in Roadrunner Sports for the Athletes Helping Athletes adaptive bike fundraiser.  We were in Phoenix last month on the day everything went live, so I took the girls down to Roadrunner Sports to see their photos and the promotional materials.  They had a lot of fun and felt like celebrities!  The staff was really sweet and gave them the royal treatment.  They even let them go in the back room to help pick out shoes I may like.  They also had them autograph one of their catalogues. We are so thankful to be part of this amazing organization!! 

Here are some photos from our time there:

There's still time to donate to Athlete's Helping Athletes and receive a coupon for $20 off your next purchase of $75 or more.  Visit a store or go online between now and July 3rd to participate.  You can also donate to AHA year-round online, even after the promotion is over.  Just follow this link: .  Your donation is tax deductible so just keep your receipt for tax time.  Thanks for helping make a difference in the life of a very special child!! 

Thursday, June 16, 2016

Have You Donated to AHA Yet?

We have!!

We are hoping to help Athletes Helping Athletes DOUBLE their goal and be able to provide 200 children with special needs adaptive bikes.  They have already raised enough to grant 50 bikes!!  Please consider going in to any Roadrunner Sports store between now and July 3rd to donate to AHA.  In return you will get a coupon for $20 off your next purchase of $75 or more, so it’s a win-win.  You can also donate online 365 days a year at

Thank you for your support!!

Updates Galore and Lots of Fun Times

Oh gosh, once again, I am super behind on blogging!  Life just seems to move so fast! 

I'll start with our not-so-fun few days last week, but luckily these days were followed by an AMAZING weekend, which I will share about too!

On Tuesday Madi woke up having a seizure.  She sleeps next to me in bed because her seizures are usually during sleep and she doesn't make much noise. I'm afraid to miss them, and what it could mean for her, so I keep her close.  She started with her typical rhythmic gagging and I gave her rescue meds and oxygen right away.  Usually it takes me her full dosage of rescue meds and constant oxygen to get them to stop, but this time it was a stubborn one and her full dosage of rescue meds didn't do the trick.  Her seizure protocol is that I call for an ambulance to have her evaluated if/when I get to her full dosage amount.  If she's stable and the seizure has passed, we can keep her at home.  If she's not stable or we can't get them to stop, we head to the hospital.  Usually by the time the ambulance comes she is already asleep and I know the seizure has passed.  We may take her in and check her shunt to be safe (though she's never had a seizure when her shunt failed), but they don't usually admit us.  This time once we got to the hospital she started seizing again and they had to give her more medication in the hospital.  That did the trick, thank God, but then her stats dropped and she wasn't clearing her carbon dioxide well enough.  They thought they may need to put her on b-pap or to tube her, but thankfully her numbers started normalizing very slowly, so they transferred us to the PICU and let her continue to improve there.   We checked her shunt to be safe, but her shunt, blood work, urine, and everything else was fine.  They watched her overnight and then we got to go home the next day.  We had to try out a new hospital here in Tucson (UMC), which is never fun, and we had a hard time getting an IV, so we had multiple pokes which was terrible, but the staff was great with her and we are thankful for the care she received.  David also had a crazy busy few days at work, because everything always happens at once, but luckily my aunt was able to come entertain kiddos while Madi and I were in the hospital, so we are thankful for that!

She's always sad until the rest of the family can join us.  Family makes everything better!

Ramya saw the vision specialist today.  We got a lot of answers to some things we have been noticing with her vision and she starts vision therapy next week.  It is common for kiddos from orphanage settings to have vision issues because of the lack of visual stimulation when they are tiny.  Her eyes have improved a lot since coming home, and we are hoping that this helps remedy her eye issues.  We are starting with 8 one-on-one sessions, but may need 12 total.  Conner has 3 more sessions of his therapy, though he doesn't have as much going on, so he was able to attend group sessions (and save our pocket book quite a bit of money).  Hopefully this will do the trick! 

In other medical news, Deena's leg is healing great and we have our next follow up with the orthopedic surgeon in 4 months.  We are in the process of getting her a wheelchair of her own, but in the meantime, she is able to use Madi's old wheelchair and it fits her well.    We also have her next PAM infusion scheduled for July and we will be able to do an in-home infusion, which is wonderful!

We also had Deena's re-adoption day through our local court.  Though Deena came home fully adopted, we wanted to re-adopt her in the US so that we could get an actual birth certificate for her and make it officially official.  She was really excited for her day and told me all day how this meant it was forever.  Of course when we got in front of the judge she was wearing her super serious face and seemed to either be terrified or didn't care, but she really was overjoyed and couldn't stop talking about how happy she was. 

During our extra time we've been taking the kids on outings and recently went to the zoo.  This time we rode the train and they kids were crazy excited about it.  They had a blast!

We had quiet a few visitors last month, which was really nice.  David's brother, Mark, and his wife, Kim, and kiddos came to spend time with us.  We took them to the Desert Museum and everyone had a lot of fun!  My parents also came for Mother's day, so we were really excited about that.  We took them to Tono Chul park and we all enjoyed our time there.  We also had my aunt and second cousin over for dinner when my parents were here and it was fun to all get together.  Oh, and our friends Darlene and Samuel from homeschool co-op came by to play and visit.  It's always  nice to see a familiar face!!

Conner attended camp for the first time over Memorial Day weekend.  He went with our old Church, North Valley Community Church.  He really, really, really wanted to go; until the night before.  He got nervous and scared and there were tears involved.  We talked and prayed through it, and I reassured him I would come pick him up if he needed me.  He called me every day, but quickly decided camp is amazing.   His days were filled with archery, airsoft wars, swimming, rock climbing, zip lines, and small group.  He told me he can't wait to go again next year!

While Conner was gone at camp we stayed at my parent's house in Phoenix.  We went to a wedding, saw family, and hung out with friends we have been missing.  We also went painting with David's family and celebrated my birthday.  We had a wonderful time!

While we were out painting we also went to eat lunch.  While we were eating Roger, Madi's pilot from the Sky Kids event we attended (read about that here) walked in.  Madi was really excited to see him, and he was excited to see her as well. 

Roger told me he had been meaning to e-mail me and tell me that, at the event, Madi really touched his heart and made his day special.  He was hoping we would attend the next event and he would get to see her, but it hadn't worked out.  We had registered for the event, but hadn't gotten a call that we were accepted until last minute and at that point, David was in Tucson, I was in Phoenix with the kids, the house was for sale, we were trying to find a rental in Tucson and start moving, I was waiting to leave at any point to get Deena home, and we had to miss the event, sadly, because life was pretty nuts.  Roger spent quite some time talking with us (Madi somehow even convinced him to walk over to Ross and help David and the girls shop for a birthday dress for me.  Only Madi could convince someone to do that.  She cracks me up!!!) and Madi was overjoyed.  Long story short, David and Roger talked and Roger offered to come to Tucson to take us up flying.  The kiddos (and David) were crazy excited!  What's even more amazing is he talked to the company he flies for, Transpac Aviation Academy, and they sponsored the entire flight!  He came out this weekend, which was just what we needed after our not-so-fun hospital stay.  He took the kiddos and David and I up in rounds so that each child could help him fly the plane.  The kids all loved it and haven't stopped talking about it.  Madi calls Roger "her pilot" and tells everyone that when she grows up she is going to live in the Taj Majal and her pilot, Roger, will pick her up and take her on vacation.  It must be nice having your own personal pilot, right!?!?!?  Madi kept talking about how awesome it all was, and even sang Roger the "Everything is Awesome" song from the Lego movie while were flying.  The company spoiled us rotten and even sent Roger with hats, lanyards, keychains, and treats for the kids.  We feel so  blessed!

There was a restaurant at the airport we flew out of called Todd's Restaurant at Ryan Airfield.  It's a family-owned restaurant and they were so sweet to our family.  They were the only place with air conditioning at the little airport, so they let us come in and hang out in their kid area for a few hours while we all took turns going up in the airplane.  They chatted with the kids, gave us drinks, and even convinced the fire fighters eating there to pull the trucks up for the kids to see.  The fire fighters turned their lights on and visited with the kids for a bit and they loved it!  After we were done flying we ate at the restaurant with Roger and the food was really, really good.  The husband of the husband/wife owner team makes the food.  He went to culinary school and the food is definitely not your typical diner food, it was really yummy!  The prickly pear tea and prickly pear cole slaw were my favorites.  We will definitely be going back to eat there and watch the planes come in and out.  If you live in the Tucson area, you have to check them out!  The wife also heard that we were new to Tucson and gave us her cell phone number with instructions to call if we ever needed anything at all.  We were very touched! 

I think that's about it for updates for now.  As you can see, our days are busy, but we play hard too.  We all know you are never promised tomorrow, but when you have kiddos with significant medical needs, you realize just that much more how much of a gift every moment of every day is.  We try our best to live life to the fullest and not let the not-so-fun parts of life keep us down.  We are crazy blessed and are so thankful that every day, even on the hard days, our journey is filled with joy!