Dancing in the Streets... A Dream Come True

Anyone who has ever spent time with my girls has surely realized one thing; they love to dance. Wherever they go, no matter what they are doing, if there's music, they start dancing. Madi's dream has been to dance on stage since she was just a tiny girl. She took dance lessons at the local community center, which she loved, but they never had performances on stage. I called so many studios, but couldn't find somewhere that would include her and also had real performances. Fast forward a few years, an adoption, a move to Tucson, and the hunt continued. A few good friends told us about Dancing in the Streets, so I contacted them. They were excited to work with the girls and included them in their performance of Sleeping Beauty.

Leading up to the performance the girls went to weekly practices. Joey and Soleste, the owners of the studio, worked hard to understand how the girl's bodies move and what they are capable of. They made sure to stretch them to try new things and move their bodies how they are able. 

They performance was AMAZING and the girls were just glowing. They wore stage makeup, tiaras, beautiful costumes, and were radiant! They had so much fun and are still telling everyone about it. We had friends, family, and even therapists show up to watch the girls and they truly felt like stars. It was such an awesome experience and it meant the world to the girls. We feel so blessed to be part of their studio and all that they do.  

Dancing in the Streets does so much for the community; even giving scholarships to kiddos who can't afford dance.  If you are looking for an organization to get behind, this is another great place that needs your help!  You can read more about them HERE.   

Our Chicago Trip

Last month we took a family trip to Chicago to visit with David's grandma and do a little sightseeing. It was such a fun time for us all.  

We spent the first three days visiting David's grandma in a little suburb about an hour outside of the city. We went to the park and a war museum, and really enjoyed our time with her.

After that we stayed downtown and showed the kiddos as much as we could for our remaining days.  The second day downtown Madi had a seizure so we ended up touring the children's hospital, but she was very well taken care of and we were back to the fun quickly.  We saw the Science of Field and Industry museum, the aquarium, the Blue Man Group, Millennium Park, went shopping at the American Girl store, and I even got to see one of my favorite friends that moved a few years back. 

We are so thankful that we got to go, and for our time there together.

Our Latest Wheelchair Decorations

The girls are loving keeping their wheelchairs decorated, so we've been trying to keep them up.  Here are our last two decorations; Spring Flowers and Fourth of July. The girls are very proud of them!

Spring....

Fourth of July...

Little Hooves and Big Hearts

We have been so blessed to be part of Little Hooves and Big Hearts in Tucson. The organization came to the Children's Clinic when we were there for physical therapy one day. They had some of their ponies with them, and the kids loved spending time with them. The ponies had Build-a-Bear shoes on, so of course the kids fell in love right away. We now get to go work with the ponies on a monthly basis and it really means so much to the kids. They include all of the kids and it really boosts their spirit.They talk about it non-stop!

Everything they do for our kiddos is provided with no cost to us. They are so sweet and amazing with the kids, and we really appreciate all that they do! If you are looking for an amazing organization to give to, this is it! You can click HERE for more information about their organization.

And now, for your viewing pleasure, here are some adorable photos of the kiddos working with the ponies.

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!