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?!?!?!?

Cinderella with Hope Kids

Last weekend we went to Cinderella with Hope Kids.  The kids were super excited to go.  Seeing plays with Hope Kids was one of our favorite things to do in Phoenix and we were so excited to be able to go to a play with Hope Kids in Tucson.  The kids thought the play was hilarious and are still talking about it.  We can't wait to see more!

Races with Hope Kids

(As you guessed, I'm still catching up)



A few weekends back we went to the car races at Tucson Speedway with Hope Kids.  It was the first car race the kids had been to and they really enjoyed it.  Madi was hoping to have someone to cheer for and met a man before the race that was standing by his truck.  She decided she wanted to cheer him on.  She took her job very seriously and cheered her heart out.   Later he found her and gave her a hat.  It was really sweet. 

We are SO excited that Hope Kids has started offering more events in Tucson.  If you are looking for an amazing organization to donate to, please consider Hope Kids.  They really touch so many lives!

Our Fieldtrip to the Museum of Miniatures

(Do I need to bother saying this is a post to catch up at this point??)

A few weeks ago we had a light day of homeschool curriculum so I decided to pack up the kids and head somewhere new.  We decided to go to the Museum of Miniatures and had a lot of fun!  They even brought us to a special area where there was a doll house the kids could play with.  The kids thought it was great.  The houses were all very intricately decorated and each had a different theme.  They loved looking for the hidden fairies and looking at the detail in each house.  It was a fun day!

Our Fieldtrip to the Recycling Center

(Yet another post to catch up)


We went on our first homeschooling fieldtrip in Tucson.  The kids had a blast!  We went to the recycling center with some other homeschooling families.  The kids declared it the stinkiest fieldtrip we've ever been on, but really loved seeing what happens to our trash after we throw it away.  We hope to participate in more fieldtrips soon!  It's fun to get out of our regular routine and be around other homeschooling families too!

Poor Deena's Leg

(Another post to catch up)

A few weeks ago sweet Deena broke her leg again.  This time it was her left fibula/ tibula.  Ramya was in a not-so-great mood (company had just left and she doesn't transition well when people come in and out of the house).  She decided to try race Deena, though Deena told her she didn't want to race and wasn't racing herself, and accidently swung around and kicked her in the leg.  It was an accident, but hard enough to break her bones.  Ramya is an all-or-nothing kid, with no middle, and she was in a funky mood, so it's all it took.  Deena's lower leg bones are very curved and need rods, but we were waiting a bit to get a few more PAM infusions in her first.  For now, they are just very, very fragile. 

Deena only cried for about half a minute, and was mostly just yelling at Ramya and calling her mean.  She asked me to splint her leg, so I did, and then she told me she was fine.  I kept noticing little things, though, that made me think she was favoring it.  When I would ask her, she would say she was fine and not in pain.  She was putting partial weight on it, scooting all over the house, bending at the knee, moving her toes around, and playing like normal, but something seemed off.  I called the orthopedic surgeon's office, explained what happened, and they told me to watch her and continue to evaluate her, then decide if she needed to come in.  I continue to watch her and was still stumped, so I called and told them I needed to bring her in.  When the doctor took off the splint he cold tell it was likely broken because she cried and didn't want it touched.  In hindsight, I should have probably done that myself earlier but I'm learning and new to all this and it just didn't occur to me.  She seemed happy and comfortable with the splint, so I left it on.  Anyhow, long story short, she is the VERY proud owner of a glow-in-the dark cast.  I'm hopeful that, with the incentive of a very cool cast, she will be more likely in the future to tell me if she is hurt.  I'm not sure if she's just so tough and she's used to being in pain that the splint helped enough to where she wasn't in pain, if her pain tolerance is just so high she didn't realize she was hurt, or if she didn't want to be taken in so she hid it from me.  She had told me she hurt her legs a few months back in the pool, but when I took her in, it was fine.  She was acting pretty much exactly the same this time, but this time she wasn't fine.  It's still hard for me to read her, which is just really hard.  I'm praying in the future it will be easier to distinguish if she is ok or not. 

Waiting to be seen

Proud of her new cast, enjoying her first strawberry milkshake

An Interesting Trip to the Dentist

(Another post to catch up)

Deena's first trip to the dentist was a success, but was also not at all what I expected.  I knew she had major teeth issues and would need a lot of dental work.  Initially, our holistic dentist was going to see her, but once we went over the extent of her issues, we decided it would be best for her to see a dentist that could perform the initial dental procedures under anesthesia in the hospital.  It can be difficult to find a dentist that is familiar with osteogenisis imperfecta (OI) and Dentinogenesis Imperfecta (DI), which often goes along with OI type 3.  After getting recommendations and calling around, I found a dentist, Dr. Hishaw at Tucson Smiles, who was familiar with both and who felt like she would be able to help Deena.  Deena loved her and did great with  her first x-rays and cleaning. 

Deena does indeed need extensive work and we are currently working with the hospital to book a date for her that also works for her dentist.  The good news is she was diagnosed with DI, so our health insurance may help pay for part of the hospital and anesthesia costs since that may fall under "medical" expenses.  We, unfortunately, do not have dental insurance, so the dentist bills will still be our responsibility to cover, but it will be amazing if insurance helps with the rest.

The surprise of the day came when we looked at Deena's panoramic x-ray.  Apparently, there is only one set of adult teeth left that haven't come in yet.  The adult molars you can already see when she opens her mouth are all she has, other than that one set.  Many of her adult teeth came down in to the wrong spot (notice the adult canines where a molar should be, for one).  We don't know if she was just missing a bunch of baby teeth, if the baby teeth were pulled, or if they fell out really early, but there was nothing to guide her few adult teeth down, so they came down in to the wrong spots in a few places. It looks like she has a lot of teeth, but in reality, she has multiple places where the baby and adult teeth are side-by-side because the baby tooth never came out and the adult tooth came down early, in a different spot than it should have.  

The plan for now is to deal with the decay and cavities in her mouth, leaving as many teeth as we can, even the baby teeth, as long as they are healthy and able to be saved.  Eventually she will need partial dentures to help fill the gaps since bridges and implants aren't an option for her.  I told her she was going to have a million dollar mouth, and she thought that was pretty great!

Deena loved the dentist so much that she came home and practiced finding cavities on Madi.  Who knows, maybe she will be a dentist one day when she's bigger.  She's a smart little cookie and I know she would make a great dentist!

 

Seeing the Big Picture

The other day I was talking to my friend, Kyla, and something really stuck with me.  We were talking about how hard it was waiting for Ramya to come home.  Seeing her transfer to the third orphanage because our paperwork was taking too long, when there was nothing I could do to speed it up, was heartbreaking.  Every day spent waiting for her felt like years.  There wasn't a second in the day I didn't think about her.  At the time, I couldn't understand why things weren't moving faster and I doubted God's plan.  What I didn't realize at the time, however, was that if our adoption had moved faster and Ramya had not moved orphanages, I would have never met Deena and our family would not be complete.  Both girls are such a blessing and joy in our lives, and I can't imagine life without them.  The delays weren't fun, and it breaks my heart that Ramya had to be moved, yet again, but I'm so thankful that there was a purpose to our trials. I am so thankful that God perfectly orchestrated the timeline so that Deena could also become our daughter.

2nd PAM Infusion Success

(This is another post to catch up)

Deena's 2nd Pamidronate (PAM) infusion went really, really well.  She was such a champ for the IV part and loved getting her infusion in-home.  Her nurse was really sweet and Deena loved that all her siblings were there with her.  I set up a table in front of the TV and we ate, watched movies, did crafts, and played with Legos while the infusion took place, which was over the span of 4 hours.  Deena said that Madi's doctors should come to the house too  I agree!  The next few days she was a little sleepy, but other than that, she didn't have any side effects. I'm so thankful we can start working toward strengthening her bones!

Power Up with Hope Kids

I'm so far behind on updates I'm not really sure how to catch up, so I think I'll just post a few highlights and try not to get so behind next time.

Last month we had an event  called Power Up with Hope Kids to raise money for their Tucson chapter.  Tucson Hope Kids were matched with power lifters, who performed routines and raised money for Hope Kids.  The girls were matched with two power lifters, Sally and Whitney.  They asked if the girls would come out on stage and dance with them at the end of their routine.  They had SO much fun!  They are still talking about how they got to go dance on stage.  Here are some pictures from the event...

We love Hope Kids and are so glad they are hosting more events in Tucson now.  They are such an amazing organization!