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!

We Are Alive!!

I know things have been really quiet on our blog lately, but we are alive and well!

Unfortunately there is no news on our adoption, which is really the biggest reason why things have been so quiet.  I have a child on the other side of the world that I've only spent a few hours with, but that I love more than anything.  I've advocated and fought for her for over two years now.  No matter what I do, though, I cannot get her home faster.  It stinks.  My heart and mind always feel like they are tugged in two different directions.  Life here happens quickly as we are busy, but Deena is always in my thoughts.  I think about her, pray for her, dream about bringing her home, and then meet the disappointment daily that we are still waiting with no news.  I try to be optimistic and patient, knowing that everything will happen in God's perfect timing, but it is still just plain hard.  Our court date June 16th never happened because after their month and a half summer break there was still no judge.  To this day, there is still no judge.  We need about 3 court dates and are still waiting for our first.  I'm praying it can happen soon and really wish I had the power to speed it up.  I will say, it's a great way to (attempt) to practice patience.  

Other than that we have been enjoying our summer.  We don't take full summers off but do the "extra" fun stuff we run out of time for during the year.  We have studied lots of fun topics like planets and fossils and have also done many fun artsy things.  We also do lots of reading.  We recently went to the Museum of Natural History for the first time and the kiddos really loved it.

At the beginning of the month we participated in the walk-and-bowl for spina bifida with the Spina Bifida Association of Arizona.  It was their first year doing the event and we had a blast!!

We have a pool and have been doing a TON of swimming.  The girls are not yet swimming independently, but they are getting close!  They all love being in the water and it's great therapy for the girls.  Conner got a snorkel, goggles, and flippers a few weeks ago.  He says that he is practicing for Hawaii, though we have no plans to go to Hawaii in the near future :).  We would really love to go there one day though!

The girls both got the HKFOs fine tuned and those are fitting great.  Madi also got her new AFOs to wear when she is in her wheelchair or just relaxing at home.  Our hope is to keep her left foot stretched out a little better to help her with standing in her HKFOs.  She calls them her "pickle braces" because she requested green like a pickle.  She is pretty proud of them and has been tolerating wearing them pretty well!

We all got summer cuts and I also got my hair colored.  The girls LOVE getting their hair cut.  Ramya decided to go shoulder-length and Madi chose to keep hers longer.  They both look adorable!

As I shared in my last post (like a month ago, ha!!!), I had been feeling in a bit of a funk since Madi's last shunt surgery and had decided to do a 7 day juice cleanse.  I successfully did my 7 days and have been drinking a green smoothie for breakfast every morning since then.  I am happy to report that I have a lot more energy and am feeling much better.  I have also been making it my goal to work out daily.  I missed two days over the past 3-ish weeks because I was sick, but other than that I have been sticking to it.  As a mom of kiddos with special needs it can be really hard to make time for yourself, but I also know it's important I keep myself healthy so I can stay strong for my girls.  It helps me manage stress and that's pretty huge!!  

Tonight on the treadmill... not amazing because I am not a runner so I just walk fast on an incline, but hey, it's something!  Every day I am able to do just a little bit more.

I think that's really all there is to report for now.  Please be praying  that a judge will be assigned to the hall in the Bangalore court this week and will hold our first court case promptly.  Please be praying for all of us while we wait, as well as for sweet Deena.  David's grandfather, John, is also very sick and he will be entering hospice tomorrow.  We haven't been able to visit him yet because we have all been sick (especially David who was sicker than I have ever seen him before.  Thankfully he is on the mend and almost completely better now).  Please be praying for him, David's grandmother, and the rest of our family during this time.  Please also be praying for David as he is still struggling to get back in to the swing of things at work.  I know he is very discouraged and it's been really difficult.  He's such a good trader but he's just going through a funk.  Things just really seem to fall apart right before you adopt.  It happened when we adopted Ramya too and it's just not so fun.  We do know we were called to adopt Deena, though, and trust that we will get through the hard times while we wait to bring her home.

Thank you for all of your prayers!

Madi Dancing in Her HKFOs using her Rifton Dynamic Stander... Spina Bifida Can't Slow Her Down!

Madi loves to dance and often puts on "performances" for us.  She's loving her new stander and wanted to try it forward facing.  That, of course, lead to a dance performance.  Today it was "Let it Go" from Frozen.  This girl is just too cute!!  When the doctors told me all the things she wouldn't do, they forgot to mention that none of it would matter because of how amazing she would be :).

 

New HFKOs, Brand-Name Keppra, and a Flooded Car.... YEAH

Today was quite the day!

It started with me waking up to David describing how he drove to get an iced coffee but ended up stranded in a parking lot instead.  It was pouring down rain and had been for hours.  There was major flooding and the roads where terrible.  He was in the grocery store parking lot, but couldn't see well because it was 4:30 am and dark, and accidently went into a deep drainage area in the parking lot.  His car stalled.  There was smoke.  He couldn't get it to start back up.  He tried to push it by himself but it wasn't budging, so he locked it up, turned on his hazard lights, left it there, and walked home.  It was not in a parking spot and was kind of in the middle of the driving lane, but there was nothing else he could do.  My sweet hubby didn't want to make me come get him at 4:30 in the morning, since I would have to drag the kids out of bed, and we live pretty close to the store, so he just walked.  I am not sure why he didn't call my dad, but apparently he enjoyed the walk, and as an added bonus, he got a shower too!  After that he was crazy busy at work and couldn't leave while I was still there, and then we had to leave for an appointment downtown, so it sat for a while.  We were afraid it was going to get towed so later in the day our very kind neighbor, Jerry, took David to his car and helped him push it out of the way and in to a parking spot.  After I got home we called a tow truck to take it to our mechanic.  Unfortunately water got in the motor so we are praying there is minimal damage.

 

 

On the plus side, Conner loved "building dams" after the rain died down.

 



 

 

Today both girls had an appointment with Ron at Hanger to get their HKFOs fitting them.  The downtown area was flooded, and of course that is where we were headed, so my dad came with us to make sure we were safe.  I am pretty spoiled with an amazing dad who loves us very much!!  It was also nice to have an extra set of hands since I had so much cargo to haul.  It turns out Madi needed brand new HKFOs so she got casted for them.  We should get the new HKFOs in about a week.  She wasn't sure if she wanted "a zillion Scooby-Doo's" or just plain pink, but decided on just plain pink.  She did a great job being patient while Ron casted her.

 

 

(Ron was a great sport and let Madi measure him :))

 

(Conner was a great sport as well and baby-sat Madi's new tiger for her while she got casted (yes, that is a glove she drew on ;))

 

 

 

Next up came Ramya.  The great news is she has GROWN and her HKFOs finally needed an adjustment!  Yeah!  He made them 1/2 inch taller and also widened the back portion a bit.  She did great with waiting as well and we were able to take them home fitting, which was wonderful.

 

 

 

On the way home we stopped at Urban Bakery and the kids got gluten-free vegan donuts.  They had been really good for the appointment, which was a few hours long, so I wanted to surprise them and get them a little treat.  My dad stayed in the car with them and I ran in and picked out a few.  I got my dad a few cupcakes too, because there has to be some perk for helping me wrangle 3 kids.  Ramya didn't want hers (I will never understand how a kid can say no to sweets!  I even got her favorite kind... vanilla with icing), but Conner and Madi gobbled them down very happily. 

 

 

 

 

We were also able to pick up Madi's brand-name Keppra today... YEAH!!  I am really praying this helps with her rashes.  There's some back-story on getting the medication, but it was not too bad!!  On Thursday we headed out to see The Rugrats Live with the kiddos.  I had forgotten my phone but decided not to go back for it because I thought it was too late in the day for calls from the doctor.  Of course I came home and realized I had missed a call from our neurologist at 7:45.  I was bummed!!  I called the next day, Friday, but couldn't get ahold of him.  His nurse said he had made notes in the file stating he had called our pharmacy and they were working towards getting the brand-name keppra approved.  The nurse suggested we talk to the pharmacy to verify.  The pharmacy said they did not have a record of this, but talked to George, the main pharmacist who thankfully loves our kiddos, and always remembers us, and he got right on getting it approved and processed.  He called the neurologist office, called me back when he couldn't get through to ask me the best way to get ahold of our neurologist, called again his office again, and then left a message with Dr. Condie's nurse.  He called me back after that and told me he hadn't been able to reach them but would order the brand-name for Madi anyway and figure the rest out later.  Thankfully the nurse called him back shortly after that and sent him a prescription for brand-name keppra, so he ran it through insurance to make sure he didn't need to call them as well, and then called us back and let us know it was all taken care of and our prescription would be ready Monday.  I'm thankful it all worked out and getting it was relatively painless!!

 

 

Next on this week's to-do list is picking up Ramya's glasses, setting up a hearing evaluation, calling to see where we stand with getting Madi oxygen to use during seizures, getting some blood tests done (the MTHFR mutation test for me, and food (IgG and IgE) for Ramya and Conner), homeschool co-op, OT, PT, and the play Charolette's Web.  Oh, and I am getting a teeth cleaning.  It will all be worth it though because we go out of town next week for vacation... woooo hooo!





 

 

 

 

 

An HKFO Kinda Day

Yesterday was an HKFO kind of day.  We had an appointment at noon with Ron Whiteside, who makes the girls leg braces for them.  We had to leave 30 minutes early to get there in time, so I packed a lunch to go and we headed out.

First Ron casted Ramya.  She currently has KAFOs (leg braces to the upper thigh), but they just aren't working well for her.  She walked in the orphanage, but was not taught how to walk correctly with the correct posture, muscles, etc..., spent a lot of time hanging on her crib, and also dislikes putting weight in her legs and using them, so they just aren't working well.  She also tries to do everything with her arms.  We (me and Tami, her physical therapist) decided that HKFOs (leg braces that go up above her hips) might just be better for her for now.  Eventually she can go back down to KAFOs, and the ultimate goal is AFOs for her, but we think we need to go up, let her muscles strengthen, get her posture correct, and all of that good stuff first.  Hopefully it helps her!  She does well when I am physically holding her body in the correct posture, but sometimes I actually have to use my arms for other things ;).

 

 

Next up was Madi.  Her HKFOs have been hurting her, so she has not been wanting to be up and standing.  She gets tight really fast, so being up is really important.  Not to mention it helps her bowels, bladder, bone density, circulation, hips, and so much more!!  Ron fixed those for Madi, so now she's a happy girl!!

 

That's all for now!  Tomorrow is Ramya's neurosurgeon appointment, so I'll be back with more updates soon :).  I pray you all have a blessed and wonderful day!