Butterfly Wonderland

Friday the kiddos and I packed up to head to Phoenix.  My Aunt was coming in town for the weekend from Hawaii and we were really wanting to spend time with her.  Additionally, David had a stock conference in Vegas and I needed to take the kids somewhere where I had support in case of an emergency.  We are also headed out of town and I wanted to get Ramya's next Lupron Depot Pediatric injection before we left because it's due right in the middle of vacation.  So basically the timing was perfect for a quick trip down and we are having a lot of fun with family!

Today we all went to the Butterfly Wonderland museum and the kids really enjoyed it.  We had been there before, but I always had at least one kid running from the butterflies when they came close.  Now they all love the butterflies and even dress in bright colors to try and attract them.  

Here are some photos from our time there...

Fun at the Farm

There's a cooperative farm down the road from us that offers you-pick produce days on Tuesdays.  We have been wanting to go, but usually David has softball games on Tuesday, in addition to Ramya's feeding therapy, and the day ends up being rushed.  David had an off week, though, so we decided to head over.  Deena was feeling great after her infusion, and the kiddos needed to get out, so it worked out well.  The kiddos had a blast and tried all of the veggies we picked.  We can't wait to go back!

Infusion Number 3 in the Books

On Monday, Preferred Home Care called and asked if they could come on Tuesday to do Deena's next pamidronate (PAM) infusion.  Though it was short notice, it actually worked out well because we are heading out of town and I'm trying to get everything done before we leave.  The promised to be done in time for me to take Ramya to feeding therapy, so I agreed.  Of course that meant I was up until 2 am cleaning and sanitizing the house, but such is life (I keep my house picked up and clean, but probably go overboard for infusion days ;)).

Deena did totally amazing, as always.  The nurse was able to get the IV on the first try, plus I had numbed Deena's arm, so she didn't even flinch.  She's such a tough girl!  

We had a visitor that day, Madi's BFF Gloria, and the girls had fun homeschooling, playing, and watching movies while Deena was receiving  her infusion.  

I can't wait for her bones to keep getting stronger!  

Fun at the Reptile Show

(Typing on my phone again so please excuse errors again ;))

Last weekend we went to the Tucson reptile show and had a blast!  We only came home with one new pet, so I think we did pretty good.  David has been wanting a snake for quite some time now, and finally got his wish.  He got a milk snake, which the kids named Milky Way.  We are soooo done with pets now.  Here are some photos from our adventure.

Madi's New RGOs

(Posting from my phone so please excuse the errors)

Madi has always had HKFOs (leg braces that go up above her hips) but she needed more stability and durability so we decided to go try RGOs (reciprocating gate orthotics).   They are bigger and bulkier, but wouldn't buckle or strain as she continues to grow.  We thought it may take her a while to adjust to them, but boy were we wrong!!  As soon as she got in them, she proudly took off.  She is so crazy strong and adaptable, not to mention determined.  We were all pretty thrilled!  She is getting some red marks so we are headed back to Hangar for adjustments, but overall we think it will be a great change for her.  Here are some photos and videos of her new RGOs.  

How Deena creatively passes the time...

And of course, chocolate for everyone helps too (It ended up being an almost 3 hour appointment!  The kiddos did great but oh man it wasn't fun)...

Join Team Double Trouble for the 2016 Walk-and-Roll for Spina Bifida

We are excited to be participating in this year's 2016 Walk-and-Roll for Spina Bifida with the Spina Bifida Assocation of Arizona.  

Please consider walking with our team and/or donating to support our team.  You can sign up and donate at https://www.firstgiving.com/team/335313.  

Here are the details of the event....

 Date

Saturday, November 05, 2016 at 9:00 AM 

 Location

Steele Indian School Park
300 E Indian School Rd
Phoenix, AZ

 Contact

SBAAZ Office
6022743323
office@sbaaz.org

Thank you for supporting Team Double Trouble!  GO TEAM!

Feeding Therapy, Vision Therapy,Physical Therapy, Neurology, and Neurosurgery, OH MY

I think this is my LAST post to catch up!!  YEAH!!

I have a lot to update on medically, so I will separate each post by topic :)

• Feeding Therapy
• I'm excited to report that Ramya was approved for feeding therapy.  Eating has been just so very hard with her and it's been a struggle to find help.  We've had swallow studies, other feeding therapy evals, attachment therapy, allergy testing, a GI doctor, had her treated for parasites even though that came back negative, treated her H-Pylori, and the list goes on and on. I heard about a great program here in Tucson that focuses on feeding therapy through play.  I was upfront with them and told them she's not the typical kiddo that they see, because there's not a physical or muscular problem we can find that's keeping her from wanting to eat, but explained she never got to be a kid and never got to have fun with her food.  I told them the struggles at home, her history, and they agreed to an evaluation.  I talked more with them during the eval and they agreed to see her as long as insurance would approve it, because it's classified as speech therapy, and she already receives speech therapy weekly.  I was able to get that part worked out so she was able to start.  I'm so so thankful to have help now!  Ramya exerts control through her food.  She spent a really long time not gaining any weight, because when she chooses how much food to eat, she only eats about 400 calories a day and has no desire at all to eat, even when it's her favorite foods.  I was able to get her healthy by heavily supplementing with a high fat, calorie, and protein shake I make for her (this was to avoid a g-tube because she was loosing weight.  I feel like she just needs more time to work through things and a g-tube won't help her emotionally), but she still has very little food intake.  The goal of feeding therapy is to make food fun and help re-set the way she views food.  We are hoping to get her to an appropriate amount of food in an appropriate amount of time so that she gains on her own unique growth curve.  I also want to find another attachment therapist in Tucson so we can work on the emotional aspect of eating while we work in feeding therapy.  I'm praying it helps!

• Vision Therapy
• Ramya is still in vision therapy and we just signed her up for another 12 weeks of individual lessons.  She's working hard though and making improvements, which is wonderful.  Conner, on the other hand, has exited and we are very excited!  His reading and writing have made huge gains and he's very proud of himself.  We are proud of him too, and our pocketbook is quite happy as well.

• Physical Therapy
• Ramya and Madi officially started PT at the Children's Rehabilitative Services in Tucson.  We were really, really wanting in-home therapy but we were unable to find anyone after months of calling.  At CRS our schedule is all over the place, they don't have openings for us every week, and Deena hasn't been accepted yet, but it is a start.  I've been talking to CRS and, even though normally they wouldn't take Deena because she's not in CRS like the other two girls, they are going to make an exception for our family, so hopefully Deena will be able to get in soon.  So far it's going well and we are excited to be back in physical therapy.   

• Neurology
• Last week we followed up with neurology about Madi's medication changes.  We are almost fully weaned on to the lamictal and so far she is tolerating it well.  The plan is to go the longest we ever have without a seizure, and then we can consider weaning down on the keppra.  Unfortunately, we need to do a blood draw and check the lamictal level, but not quite yet.  The hard part is that Madi is a very hard draw and blood draws are also very traumatic for her, so we are already starting to pray it goes smoothly and they are able to get what they need on the first prick. 

• Neurosurgery
• Thursday the kids and I drove to Phoenix to see neurosurgery.  Ramya and Madi both look great and don't need to go back for about a year and a half.  Before we go back in we will get new MRI scans since it's been a few years since their last ones.  If they can hold still, they won't need sedation, but if needed, we are able to sedate them. We will see how they are doing at that time and decide at that point.  We stayed in Phoenix to visit family and friends for the weekend and enjoyed our time there.

I think that's all my updates for now.  Whew, I'm finally caught up!!  Thank you for always following our journey and praying for our family.  We appreciate you!

Building our new Lego Birds set

Playing Barbies... aren't they just the cutest?!?!?!?