Beauty from Ashes

From best friends and crib-mates to sisters. My girls lost everything. They lost their families when they were brought in to the orphanage. They lost their friends, caregivers, language, and culture when we brought them here. Though they now have the medial care they needed, a family that loves them fiercely and advocates for them, more than enough food, new friends, a good education, etc...., we can’t take away the loss or trauma they experienced. Adoption can have gain, but it’s deeply routed in loss. I’m thankful that they will always have each other.

(For those of you wondering, Deena was in Ramya's third orphanage.  They were best friends for the almost year that Ramya was there before coming home.  I met Deena on my trip to bring Ramya home.  Shortly after my return, we decided to try and adopt Deena.  The process took about 2 1/2 (very long) years.)

Now for the Medical Stuff

Overall, though we've had plenty of therapy and appointments, the kids are all doing well and are pretty stable medically, which is a HUGE blessing.  Here's a quick update for each kiddo:

• Conner:  Conner had been back in speech therapy for about 6 months to work on his r's.   He was motivated to get them down and just exited in December.  Because that was the final sound he needed, he should be completely done with speech therapy now.  We are all proud of him!  He's been in therapy on and off since he was about 4, so this was a big moment to celebrate.  He wanted to pick dinner, so of course that's what he got!

• Ramya:  Ramya has also been pretty stable medically.  She's needed some wheelchair adjustments and needed her AFO's lengthened (she's had her wheelchair about 4 years, and her AFOs about two, so I'm thankful she's finally grown a bit), and also has been continuing with vision therapy and attachment therapy, and we are also adding back in some cranial sacral work.  She has OT, PT, and speech too, of course, but those will be ongoing therapies.  We just did a routine renal ultrasound and she will need a full brain and spine MRI soon as well, just to see how things are going.  We are praying everything looks good there.  Ramya continues to make progress in homeschool and therapy, and we are proud of her!

• Deena:  My little feisty Deena is doing great.  We had a bit of a scare when her phosphorus came back low at her last infustion/blood draw.  The doctors started talking about rickets, which would be no fun and would just further complicate her bone development.  I upped her vitamin D, which was also low, then we re-tested her.  Her test came back within normal ranges.  She had another draw more recently, which showed that her counts have continued to improve.  We were so thankful for that!  She also has not had another break since her September one. during therapy  This is HUGE and another big thing to celebrate.  She had her first bone density scan, and though it showed a significant defect, the doctor said her scan looked better than she expected.  Yet another big praise!  Her bones are responding well to her Pamidronate infusions and she has gained so much strength.  She spends much of her day standing and practicing walking and is highly motivated, which shows.  She's progressing quickly in physical therapy as well, which is awesome.  She's doing really well!

• Madi:  Madi recently got an ALF (Advanced Light Force) appliance in at the dentist, and we are hopeful we will start seeing changes in her bite, jaw growth, tongue thrust, sleep, eating, and breathing soon.  She wasn't a big fan the first few days, but she doesn't even notice it's in her mouth any more.  She goes back monthly for adjustments and they are pretty quick.  Madi is continuing with vision therapy and has also added in some cranial sacral work, in addition to her weekly OT and PT.  She also just had a renal ultrasound and will have an MRI as well.  That's a long, complicated story that has consumed hours to figure out, which I'll touch on later, but it should all be completed soon.  Madi needed some hormonal testing done with endocrinology, which was not fun at all, but it's over with now, and we have the answers we need.  She's has had a huge growth spurt, again, and no longer fit in her wheelchair or RGOs.  Her RGOs are now in, though they are currently back in the shop for some adjustments, and she's so excited to be back up and standing.  Her new wheelchair should be here next month, which is also exciting news.  She works really hard and it's so fun watching her grow.

Me:  I know, I know, you never hear about my medical "stuff", but today you get to.  I am so very thankful to be healthy and be able to do what my kiddos need, and not have many updates in this area.  Last month I was diagnosed with SIBO (Small Intestinal Bacterial Overgrowth).  I have a minor case, thankfully, but it was the answer to some uncomfortable tummy issues I was having.  I was constantly bloated, puffy, and retaining water, no matter how healthy I ate and how many foods I cut out.  I'd wake up first thing in the morning feeling bloated and full.  You'd think I'd be skinny because eating hurt, but I love to eat, so that never stopped me.  I've been on my treatment plan for a little over a month now, and I've felt so much better.  I am not eating many foods, because of the phase I'm on, and am struggling to keep my daily calories high enough, but I'm trying really hard to keep my calories and energy up so I can do what I need to with the kiddos.  My doctor allowed coffee, as long as I drink the Bulletproof brand, and I am sooooo thankful for that.  I've been able to continue working out, though I feel my muscles get tired quicker than I like.  It's all worth it to heal, though, and feel better.  Some of my symptoms returned recently, though I haven't had any new foods or moved phases, so today I had just bone broth and no food to see if that would remedy it.  Sadly, I feel worse today than I did before.  I'm suppose to do just bone broth one more day, and then if that doesn't work, I'll go back on antibiotics for a few another round.  Though the process can be long and I miss a lot of my favorite foods (sweet potatoes, popcorn, quinoa, salads, and so much more), I'm at peace with the plan.  The most important thing I can do is take care of me so that I can be the mom I need to be, and that's exactly what I plan to do.  I'm thankful to have found a good naturopathic doctor who is willing to dig for answers and keep me running strong.

Other than that, life has been typically crazy and fun.  The girls are currently in dance and have a recital coming up in April.  They've had so much fun practicing.

David took the girls to the daddy-daughter dance at a local Church, and they had such a wonderful time with him.  Three years ago, Ramya and Madi were headed to the daddy-daughter dance at our homeschool co-op when Madi had a seizure and couldn't attend.  Ramya was able to go, which was really special for her, but Madi still talked about how sad she was to miss it and how much she wished she could have gone.  When I read about the dance, I signed the girls up right away.  I'm so thankful the girls have a daddy who loves them so much, and who cherishes spending time with them.  

We had good friends visit this weekend and stay with us, which was so much fun.  We went to ice cream twice (man did that ice cream look good), had pizza (even that looked good, and I gave up on pizza a long time ago because it always makes me feel sick), went to the zoo, and just enjoyed their company and conversation.  

 Last night I was able to meet up with a few of my favorite mom friends, who have been there since Conner and Madi were little, and who helped welcome Ramya and Deena home.  I've missed my friends.  We've always been blessed with such an amazing support group, and moving away was hard. Between having friends visit, and getting out with my friends, my heart is happy and filled.  

I think that's it for now!  I'll update once the girl's testing is done and we know more.  Have a blessed and joyful week!

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!

On Being in the Picture

(I often write blog posts in my head and never type them out.  They are usually a little more emotional /personal /raw in nature and not something I would normally publish.  I have decided, though, that those thoughts and feelings are part of our journey and I should start getting them out.  I am sure there are others out there that feel the same way as I do at times, and I want those people to know that they are not alone.  These posts will start with "On...", so that you know what to expect)

Around Christmastime I was looking at Facebook and noticed a picture with many of my momma friends, together, at dinner.  It was a dinner I was not invited to, so naturally, I was not in the picture.  It was in that moment, though, that I realized that I haven't really been in the picture for a long time.  In fact, I haven't been in the picture for so long that I have lost touch with many people I used to consider my friend.

I'm not going to lie, the realization stung a little.

I will admit that sometimes I am an absentee friend.  Sometimes life goes haywire and we hunker down, pulling together as a family, but pulling away from anything extra.  There are times when I would love to have friends over for dinner, have some alone time out, or sneak out with my girlfriends, but life doesn't always work that way for me.  Someone gets sick, someone needs me, there's a seizure, we have extra doctor's appointments, or sometimes, I'm just plain tired and making plans seems like too much work.   There are other times, too, when I could say "yes" but choose to say "no" to spend quality time as a family.  I will admit, though, that sometimes, for a second, I get a little envious of my friends who get out a lot.  Sometimes I feel a little twang of jealousy towards those that get to run away for a girl's weekend, or a fun weekend with their husband.  Don't get me wrong, we truly are blessed, there is no doubt about it.  David is an awesome husband and encourages me to get out of the house when I am able, and I am thankful for that.  We have lots of date nights "in" too, and we love that time together.  We are blessed with family that is able watch our kiddos sometimes so we can get a few hours away together.   We are also very fortunate in that we have been given a large capacity to love on our kiddos without running out of steam.  For that I credit Jesus and Starbucks.  I can't help but wonder, though, how it feels to be able to go out without having your phone in your hand the entire time, never leaving a 20 mile radius, just in case of emergencies.  I wonder how it feels not to be glued to the baby monitor at night, watching your little one's every move.  I wonder what it feels like to be  the one in all of the pictures.

After some tears and processing, I realized I truly have peace and am ok with not being in the picture.  We knew that raising three kids, two with special needs, and one with some extra emotional "stuff" from years of neglect, would mean that life would change.  We knew that there would be things we would have to walk away from. Our life has changed a lot over the years, but we truly do not regret one second of it.  These kiddos are the most important work we will ever do in our lifetime.  Seeing the joy and smiles on their faces, seeing them thrive and overcome obstacles, and seeing the compassion they have for others makes every second worth it.  The truth is, sometimes I get a little jealous, but I honestly wouldn't change anything about my life.  My life can feel crazy sometimes, but it's mine, and it's perfect. 

I have also come to appreciate those that have stuck by us even more than I did before.  I am thankful for friends who don't take "no" for an answer.  I'm thankful for friends who know we want to see them and invite us over, even if it is our turn to host.  I'm thankful for those friends who don't accept a "we're fine" answer and know to keep on asking.  I am thankful for those friends who visit us in the hospital, pray for us, rejoice with us, and take the time to understand our life.  God has given us some pretty amazing friends, and they truly are a blessing in our lives.



To any of you out there who are no longer in the picture, just know that you matter.  What you give up can feel hard sometimes, but what you gain is even more precious.   I am praying that God grants you peace, hope, and joy in your journey and lifts you up when you feel weary.  I pray that you have the privilege of knowing that your work is significant.  Your picture might look different, but just know, what you are doing is important and you are never alone.

 

Fun with Friends and Family on Vacation

We spent most of our trip with friends and family, it was great!There were more friends and more family we would have liked to see as well, but time just ran out, or schedules didn't work out.  We are blessed with a lot of people we love, and that love us as well, that's for sure!!  Here are some pictures of our treasured times with friends and family....

Meeting the Orr Family at Disneyland for the First time

 

 

Traveling with Family... Both My Parents and David's

 

 

 

 

 

Meeting up with My Birth Dad, Mark, and His Wife, Michelle

 

 

Meeting up with Girlfriends and their Kiddos on the Beach