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Monday, February 26, 2018

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!

Friday, February 16, 2018

An Attempt to Catch Up

I've gotten so far behind on our blog that I'm not sure how to catch back up, ha!  Each time I sit down, the task seems a bit daunting because it's been so long.  In general, it's a good thing, though, because it means we've been so busy having fun and living our lives, that I haven't had much time to stop, sit, and reflect.  Though maybe in our busy schedule, sitting is what I need from time to time.

When I last left off, we had gone to Disneyland and California, then came home to enjoy Deena's new bike.  We worked on getting back in to a routine with homeschooling, appointments, therapy, and life.

We enjoyed some homeschooling fieldtrips, the girls and I went to see Shopkins Live, the kiddos had a blast on Halloween, and we enjoyed life being slow for a bit. Just about when we got settled, though, things got busy again.  

In November Madi turned 9.  I'm still in total shock that my baby is getting so big.  Madi had so much fun at her birthday party and loved celebrating.  We traveled to Phoenix and had a painting party with our friends, then also had a family party to celebrate.  She picked a Pokémon theme and got a cute little Pokémon dress to wear to the celebrations.

 We came home, recovered briefly, worked on some homeschool projects, and then Thanksgiving hit.  We traveled back to Phoenix to celebrate with our family, and had a really nice time.

(In Phoenix with family....)

(Proof that we REALLY do relax sometimes)

We re-settled once again, making sure to have some fun amid the busy Christmas season.  We went to the Desert Museum, decorated wheelchairs, prepped for Christmas, and even got to ride a party bike with my parents (who came to visit), my Aunt, and my second cousin to look at Christmas lights.  Oh, and Starwars.  I can't forget Starwars.  We saw it on opening night and all loved it, of course.

Oh goodness, and Santa.  I can't forget Santa.  We went to a really fun event with Hope Kids where we got to play games, ride rides, and spend time with Santa.  The kiddos even got gifts and had so much fun.  We also Santa at the Children's Clinic, where we go for therapy and some appointments, as well, and the kiddos got more gifts.  We had a special visit from my birth grandma, Donna, and her husband, Jim.  We enjoyed talking and catching up, and they gave the kiddos their Christmas gifts as well.  They were on cloud 9!

We celebrated our Christmas with the kids a little early, and then we traveled, once again, to Phoenix to spend time with family for Christmas.  Since both David's family and my family live in Phoenix, we travel often.  We really enjoyed our time there, and came home ready to rest a bit.  We also came home to a lot of appointments, but we made it through.  We celebrated David's birthday as well, which included cheesecake, so everyone was pretty happy about that.  David's parents sent David and Conner on a hot air balloon ride for their birthdays, and they had a wonderful time.  It's something they will never forget, that's for sure!

Over New Years my birth dad, Mark, and his wife, Michelle, came to visit and stay with us for a few days.  We had a really fun time with them.  The kids especially enjoyed taking them to the Children's Museum, which they love.

The New Years started off with a bang as we celebrated Conner's 11th birthday (I know, 11!  I can't believe it either!!), Deena's 10th birthday (Her second birthday home!!), and Deena's two-year adoption day (We celebrated with Indian food at her favorite café, at her request, which was perfect).  We had a friend party for Deena and Conner where we went to watch Paddington 2, then came home for pizza and donuts.  The kiddos loved their party, and it was so fun watching them be so excited.  They picked a cat theme and both wore cat-themed outfits, which was adorable.  

We had friends come visit for the day in January and we had a lot of fun with them.  We got to check out a pinball arcade we've been meaning to visit, and we are planning to go back for sure.

We found an amazing organization called Little Hooves Big Hearts, and have had the privilege of visiting and working with their miniature horses twice now.  Our second trip out was in January, and we are looking forward to our visit next month.  Every time we leave, the kids tell me they had "the best day ever".  They really love going and spending time there.  They let them groom the horses, do obstacle courses with them, and they just have a blast.  

It took me a month or so, but I finally got the Christmas decorations off the girl's chairs.  This time we went for a nice spring look, with ribbon and flowers.

A few weeks ago, we celebrated Ramya's 5 year adoption day.  She was really excited to celebrate, as we all were, and was beaming all day.  Ramya is a kiddo who doesn't often show much emotion, and it was good for the soul to see her so excited.  She chose to go to Smashburger to celebrate.  We also watched her adoption video together and shared stories of our time in India.

Last weekend we were back in Phoenix for a fun, whirlwind of a trip.  We had a family birthday party for Conner, Deena, and Ramya (Ramya's birthday isn't until March, but we have been lumping all the cousins together twice a year for big family parties.  It's a ton of fun, and also helps make us slightly less busy and crazy), and also had two baby showers to attend.  The kiddos party was, once again Pokémon themed.  We had it at a park that also has a small train.  It was such a fun time!  

We ended this week with a bang....

.... sorry, I couldn't resist, she's just too cute.  We cashed in some cash back bonus awards we had on our credit card for Dave and Busters giftcards, then took the kiddos there for dinner and games to celebrate Valentine's Day and how much we love them.  They, of course, had a blast, and came home with a few new fun trinkets, like this whoopee cushion.  

As you can see, we've been crazy busy, but in a good way!  I'm sure I left out a bunch of stuff, but you get the idea :).  Though life is busy, we really try to focus on having fun.  It would be far to easy to get wrapped up in all of the therapy, appointments, homeschool, and "medical" stuff in our lives.  We really try to be intentional about making sure we find joy amongst the busyness, and give our kids lots of opportunities to just be kids.  We may not ever sit down, but it's worth it!

I have some medical updates as well, but I think I will wait on those for now.  Overall, everyone is healthy and we are thankful for that!

If you've made it this far, thank you for taking the time to catch up on what we've been up to. We always appreciate your thoughts and prayers, and it means so much that you are walking this journey with us.