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Do you shop at Amazon.com or know someone who does? Click on the link below, or any Amazon link in this blog, to help us earn Amazon Credit in order to buy therapy equipment! Anything you order off Amazon counts! Please bookmark Madi, Ramya and Deena's link and pass it on... every order helps! http://www.amazon.com/?_encoding=UTF8&tag=missmadi-20

Sunday, April 2, 2017

A Quick Update on Madi and a Prayer Request for Deena

For those of you who are our friends on Facebook, you may have seen that Madi was in the hospital this weekend.  On Friday she woke up seizing, but it wasn't a typical series of seizures for her.  After maxing her out on her rescue med, I called 911 and asked to be taken to the hospital.  She was awake the whole time, but I think she was hallucinating because she kept talking about seeing Sponge Bob and skeletons; two things she never talks about or watches on TV.  At the hospital she had another seizure are required IV meds to stop it.  After that she finally fell asleep and I knew that the worst had passed.  We had to change rooms because they were understaffed and were moving everyone over to the adult ED section, but she slept through all of that, thankfully.

While we were at the hospital they ran tests to try and see why she had a seizure.  Her shunt series came back just fine, her urine looked great, but they came back and said her blood work looked terrible.  Her white and red counts, as well as her platelets, were very low.  They told me they needed to transfer me to another hospital so that she could see a hematologist and prepared me for the fact that she might need a platelet transplant.

They let me transfer with her, so I was very thankful for that.  This is the first ambulance ride she remembers, and she was pretty excited, but also nervous and wanted me to hold her hand the whole time.  I'm thankful I was able to be there to do that for her.  

At the next hospital the brought us directly to the PICU.  We were put in a room with a nurse that already new Madi, and she was really sweet with her.  You could see in her eyes, though, that she was worried for her and what news might be headed our way.  They sent the hematologist to talk to me.  She started using words like "leukemia" and "cancer" and we were starting to get worried.  They wanted to re-run her tests to get a baseline there.  Thankfully they were able to use the ultrasound machine to find a vein in her leg, so the blood draw didn't bother her at all.  Normally it is very traumatic and upsetting for her.  

After a long day of waiting, they got her blood test results back.  Everything looked perfect.  Not one thing was low.  They transferred us to the hematologist unit and out of the PICU and the doctor came to talk with us again.  They basically said that they couldn't believe the blood work was from the same child.  The doctor did say she has seen this happen one other time, where things went from looking terrible to looking just fine.  She said she wasn't sure what happened, but we were all so relieved.  God is watching out for our sweet girl for sure.  We stayed overnight for monitoring but were discharged the next morning.

It was a crazy and stressful whirlwind, but we are so glad to be home as a family again.  Madi is back to her normal, spunky self, and we couldn't be more thankful!



Next up... Deena!  Sweet Deena has dental surgery tomorrow.  She's needed it for months but this is the first opening her dentist had available and we are thankful the time has come.  She came home from India with some rotten teeth, lots of cavities, and a special little mouth that's missing most of her adult teeth.  In addition to having OI (osteogenesis imperfecta), she also had DI ( Dentinogenesis Imperfecta).  Tomorrow they will pull some of the teeth that are beyond saving, repair those that can be repaired, and cap those that can be saved with a cap.  The surgery should last about 1 1/2 hours and should be outpatient if all goes as planned.  The long term plan is to keep her teeth as healthy as possible, going to partial dentures when needed.  Please be praying for a safe surgery and fast recovery.

Thank you!!







     

Sunday, March 26, 2017

We're on the Move Again

Due to an unplanned series of events, it looks like we are moving!  We didn't think it would be this soon, but here we are.  We are excited to settle down (again); this time in a place of our own. 

We have found old leaks and mold in our rental house multiple times (4 now??), and the house is currently getting remediated.  Though we have a lease through December, the owners are really wanting to sell the house and be done with it.  We've been living out of half of the house for a while now because of all the issues, so we are ready to move on as well.  We've been crazy busy, looking at houses any free moment we had. 

It was very difficult to find a house that would work for us because we have so many limitations due to area, house size, needing a flat street, etc....  Tucson is very hilly, and most houses have multiple steps and/or steep driveways.  We finally found a house that we think will work out great for us.  It's 3 stories, but has a residential elevator.  It's in a small gated patio-home type community, but still offers a lot of privacy and great views.  They yard is small, but there's also plenty of side and front yard, all that is private and not shared.  The roads outside are completely flat and great for walks and bike riding.  It backs up to the river walk and (about 25 miles of paved, flat biking roads), and has two private entrances.  The path is amazing for the kiddos to bike on and is going to be great for us.  There's also a community park, two dog parks, and a pool.  The downsides are how close together all of the houses are, the fact that my van won't fit in the garage, and the fact that we really need that elevator working.  Residential elevators tend to go down often, so we will need to be careful to get it serviced often since we will use it so much.  We may also get a chair lift from the first floor to the second floor, just for a back-up plan. 








We have a 45 day closing so it looks like we will be moving in May.  The next 45 days are going to be filled with packing, packing, and more packing.  If you are close by and want to help us fill some boxes, we will be very grateful! 




In other news, we are getting a puppy!  My sister-in-law's sister just bred goldendoodles and momma pooch is due any day.  We didn't think it would work out because it was looking like we wouldn't be able to find a house in time, but now the timing looks just about perfect.  The kids are on cloud 9 and can't wait to have a dog again.  We hope to work on training it to be a service dog for the girls as well so that he/she can come with us wherever we go.  I need to find a company here to help us still, but we have some time before we need to have one.  Here's a picture of the dad and mom...


Other than that, life has been chugging along.  We spent a long weekend with David's parents in California and had a lot of fun. 



Deena has had her cast off for a bit and her leg is healing well after her rodding surgery.  Dr. Vincent took it off about 3 1/2 weeks post-op after she gave her word to take it easy, since technically it was still broken from surgery.  She kept her word and has been doing well.  He just said she can work on weigh-bearing now and she is very excited.  The girls are playing on an adaptive baseball team and are proud to be MuckDogs. 



Ramya turned 10 at the beginning of March.  She requested a movie and cake with family, so we went to see Rock Dog with mine and David's family, then went to lunch at Smashburger and had cake.  It was a simple party, but she really enjoyed it.  We love celebrating her!


Other than that, life has been chugging along.  We will keep everyone updated on our big move.  Please be praying for a quick close and for Ramya, as she does not do well with change and is already having a lot of regression and big behaviors as we prepare to move.  Thank you!


Wednesday, March 8, 2017

Our Family Photos

My amazing and talented friend, Michelle, took family photos for us, and we LOVE how they came out!  If anyone in Phoenix needs a photographer, she's your girl!  Her website is http://www.michellepraskins.com/. 

In the past we have had photos in more rugged areas where we couldn't bring the girl's chairs.  Since their chairs are essentially an extension of them, it was important to me to include them in this round of photos.  She captured all of the kiddos joy, and spunk, perfectly!

We also wanted to have my family included in photos, since we haven't ever had photos as a whole group.  Both of my brothers, my parents, and my older brother's family, were able to join us.  I love big family photos! 
























Thursday, February 2, 2017

A Quick Deena Update

Saturday, the day after Deena's surgery, she was pretty tired and puffy still.  She stayed awake most of the day, wanting to spend time with her siblings and dad, but you could tell she wasn't feeling amazing.




We talked about doing a blood transfusion because her levels were still on the lower side.  The doctor left it up to me to chose, so I asked to give her another day and see how she did.  He agreed so I just watched her closely.  She only needed oral pain medication; she's so tough!  Physical therapy came and evaluated her and then we ordered a temporary wheelchair with elevating leg lifts, which came in late Saturday night.  Other than Deena feeling well, it was the big "thing" she needed to be able and go home when she was ready.  I always appreciate being prepared to discharge and not having anything holding you up!  I also realized her leg wasn't going to fit in her carseat, so David ran to grab a high-back booster from our friends.   

By Sunday, Deena was a different kid.  She was more awake, talkative, and energetic.  She wanted to take a walk and go to the Playroom, did lots of crafts, her appetite was up, her swelling was down, and she was very eager to get home.  We were discharged Sunday and she was SO excited to be heading home.




Deena has been doing well since coming home.  She is taking her oral pain meds, but has minimal pain when she is on them.  She isn't waking up and asking for medicine, so I can tell she is feeling better.  She's also been more active and I've already reminded her that she just had surgery and should take it a little easy.  She does still have a temperature of about 99 degrees, so I'm keeping an eye on that (she's had a higher temp since surgery).  The doctor put her on iron to help rebuild her system, and I've doubled her Juice Plus supplements to help her heal. 


Deena is doing well in the booster seat.  I rolled a small blanket to go under her cast and that seems to keep the pressure off well.  We were able to take a small trip Tuesday to eat lunch with my brother, since we haven't seen him for a bit, and she did great with no pain.  It was good to hug him and spend time with him, and Deena enjoyed some down-time in the car to play I-pad. 



Deena's Spica-type splint will stay on for about 3 1/2 -4 weeks.  The orthopedic surgeon is going to help me undo it all in his office after that and see how she is doing and healing.  At that point, he will determine what kind of splints she will go in to, and for how long.  If she's doing well, I may be able to remove those temporarily to bathe her, and then put them back on.  For now, though, it's sponge baths and hair washing in the sink.  I can't wait to see how straight her legs are. 

I think that's about it for now!  Thanks for all of the prayers for our sweet, strong girl.  We really appreciate them!


Friday, January 27, 2017

Surgery is Over and Went Great

Whew! It's been a long day!  Surgery started right around 8 this morning and we finally got a call at 1:40 saying that surgery was done, she did really well, they were splinting her up, and then the doctor would be out to talk to me.  Dr. Vincent came shortly to talk to me about how surgery went.  He brought me her old rod from India, which was really interesting to see/have.  It's a generic steel rod that was supposed to be telescopic like the FD rod.  Basically, the tip on the part that goes up into the other rod portion was bent so it wasn't deploying correctly.  He had to make a cut in the bone to get the rod out, but was able to fully remove it. 


The new rods are in both her femur and her tibia and are positioned perfectly.  She has a removable spica cast on, which we won't remove for quite some time.  It's nice, though, because when she is ready to bathe I can unwrap it, bathe her, and then re-wrap it. 

After Dr. Vincent left (to do another surgery and then see patients... I don't know how he does it.  He's amazing!) the anesthesiologist came out to talk to me.  She was given a block, aka a kid's version of an epidural, and her pain was managed well.  They did intubate her, which they told me they would before surgery, just because of how long surgery was going to be.  She wanted her to be able to take some deep breaths and felt it would be best for her.  Everything went great as far as that goes.  Deena did have some blood loss, but her blood test came back ok, so she did not need a transfusion.  We will watch her closely for the rest of the day and give her one if needed, but as of right now, she is seeming ok.  The anesthesiologist gave me a hug and then told me they would be out to bring me back.

Waiting is SO hard but I finally got the call that they were grabbing me and then bringing us to a room.  Deena has been sleeping pretty much since she got out of surgery, waking up just long enough to wiggle her toes for them.  She also threw up a little bit, so they gave her zofran.  The plan is to let her sleep as much as she needs and they are doing a good job not disturbing her.  She is on a regular diet so she can eat and drink whenever she is ready, though we will take it slow since she had a tummy ache. 


Thank you for keeping us in your thoughts and prayers.  I'm praying her pain is able to be managed well and she can bounce back quickly.  She's so tough and resilient.  She's pretty darn amazing!
 


One Giant Update with TONS of Pictures

We've been so busy, I'm not exactly sure where to start!  Instead of doing individual updates, I'll try to just do one big update, so bear with me!

In December we took the kids to the Moscow Ballet's Nutcracker.  I'm a huge fan of giving them as many experiences as I can, and was so glad we were able to go.  All the kids really loved it, especially the girls.  In hind-sight I should have told them the story before we got there, as there were no words so they were a bit confused, but they loved it anyhow.  It was fun dressing up fancy and going together. 




My aunt treated us to a bike ride to look at lights and that was a lot of fun.  The girls loved shouting "Merry Christmas" at everyone, and definitely spread Christmas cheer.  Conner had a lot of fun as well, and really loved the whole house decorated with cats. 



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We also went to the Reed Park Zoo to look at their zoo lights display with another homeschooling family from our Church that we enjoy hanging out with (they have 3 boys, so Conner is in Heaven when we are with them).  The kids loved the lights, and Pokémon was by far Conner's favorite.  The girls preferred the carousel, though they loved the lights too.





The week before Christmas we did a quick turn-around trip to see my Nephew before Christmas.  We met him at the LEGOLAND Discovery center and tried that out for the first time.  They have a few rides, some guided builds, a 4D movie, as well as some free-build themed areas.  We had a lot of fun and I know we will be back. 






Deena loved her first Christmas home.  It was so full of excitement and wonder for her.  I loved watching her eyes light up with each tradition she participated in.  I made sure to order a few adoption and India ornaments for her so that she had ornaments on the tree as well.    She loved decorating the tree and also loved sitting by it.  She would carefully touch each ornament, and asking for the story behind them.


We went to Phoenix for Christmas this year, so we celebrated as a family early.  We totally blew the Christmas budget (like blasted it right out of the water....  thank goodness for Christmas sales) and got the girls each their own Fisher Price Wild Thing ride-on toy.  They are hand-powered and such fun toys.  They LOVE them!  The road by our house is very rough, so there's not much they are able to ride on out there, as it's too rough for wheelchairs or plasma cars.  They LOVE riding their bikes (now to get Deena one too!), but want to go far in them of course because they go FAST, so these give them something to play in the front yard with.  It works great on a bit of a rougher terrain so it's a great option for them.  Conner got a hoverboard for something to play outside with too.  They are the happiest kiddos on the block! They are also the only kiddos on the block, but I know they would be the happiest regardless.  Every time they are on them they just giggle and giggle.  It makes every penny worth it! 

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We enjoyed our time in Phoenix with family and the kids loved celebrating Christmas so many times. 





Madi had a seizure after the holidays, which was a bummer.  We were hoping her new medication would stop her from having more.  When we had tested her levels, though, they were on the low side, so we increased her dosage with hopes that her seizures will finally be under control.  We took her to the ER after her seizure, just to be on the safe side, but thankfully she had come out of it at home with her rescue meds and oxygen.  She probably didn't need to go to the ER, but her teeth kept chattering and we wanted to be extra sure she was done seizing since we had maxed our her rescue med dosage at home.  We weren't there long, and she didn't need blood tests or anything, so that was good.  Once we got home she came down with a fever and threw up multiple times, so I think she was just coming down with the flu.  She doesn't normally have seizures with the flu, but she likes to keep us guessing :).  We are praying this is her last one!


On January 2nd we celebrated Deena's first year home.  She chose Indian food to celebrate and had requsted idli, which our normal go-to Indian restaurants don't carry.  Thanks to Google we found a great little family-owned restaurant/store with authentic food that makes both idli and dosa.  She was in Heaven and really enjoyed herself.  I can't believe she's already been home a year.  She has adjusted so well and is such a sweet, loving, and smart girl.  I'm so thankful that she is ours! 


Conner's birthday was a few days after Deena's adoption day.  We took the family to the Pima Air and Space Museum for a space shuttle model build, then went out to Oregano's pizza for some gluten-free yumminess.  He also had a friend spend the night and it was the perfect day.








Because the fun never ends, 3 days after Conner's birthday we celebrated Deena's 9th birthday.  This was her second birthday home, as she came home the day before her 8th birthday last year.  This year she was SO excited for her birthday.  She wanted to go back to the Indian food restaurant we had found, so back we went.  I think we have found her new favorite place for sure.  She ate idli, dosa, AND naan, in addition to sambar and chicken tikki masala.  She left with a big smile and a very full tummy. 



Deena had another PAM infusion, which she gets quarterly.  We are so thankful that she is able to get them in our home and that we have been blessed with amazing nurses who get her IV quickly.  She does so great with the infusions and we love that we can help make her bones a bit stronger.



I decided to take a day off of homeschooling and take the kids to the Children's Museum for a few hours since we hadn't been there yet.  A few hours turned in to the entire day, but they were having so much fun I didn't want to tear them away.  We went ahead and purchased a membership, since it was almost the cost as a one-day trip for us anyhow.  It's a small museum but it's not too far away and it's well done.  They are anxious to go back and play some more.


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We had some good friends, the Thompsons, come visit and spend the night with us.  We have been missing our dinners and time with them and it was SO nice to relax and have their company.  The hardest thing about moving has been being away from friends and family.  It does all of our hearts good when we have company.  A few weeks later we had a visit from Kyla, our friend and unofficially adopted teenager (that's now an adult), who lived with us for a year before Ramya came home.  She is like family to us and the kiddos really loved having her here for a weekend.  I had told her if she came to visit I'd take her to get a few tattoos she's been wanting.  I decided to also get the one I have been wanting for a while.  We went to Jay at Sanctity tattoo, as he was recommended by the pastor of our Church and I know he does a great job.  I got "walk by faith" tattooed on my right foot.  I often think about how different our lives would have looked had we listened to what the world told us to do, instead of walking by faith and following God's plans for our family.  Our greatest blessings have come from stepping out in to the (often scary) unknown and trusting that God would see us through.  It's not an easy thing to do; something I fail at on a regular basis, but it's a blessed journey indeed.  I love how it came out, it's exactly what I was envisioning.






Conner and Deena wanted a combined friend party and asked to go to Build-a-Bear with their Tucson friends.  Since it's so costly there, it worked out great because it was less kiddos.  Costco also had a special around Christmas where you got $100 at Build-a-Bear for $70, so that came in handy.  All of the celebrations, combined with the cost of Deena's surgery and Christmas has been a LOT lately.  I'll gladly take any money off I can get!  Deena really enjoyed having a real party this year and was on cloud 9 the entire time.  Conner said it was his best birthday yet.  We also watched a Star Wars movie, ate pizza, and had ice cream sundaes.






Last week we had 3 appointments in Phoenix, so we also celebrated Conner, Deena, and my nephew's birthdays with family.  We just had a simple family lunch at the park, but it was fun.  My sister-in-law makes the most amazing cakes and the kids loved them.  We also had a piñata and, hey, who doesn't love a piñata?!?!?







Yesterday Deena's first new-to-her wheelchair came in.  She loves it!  Ramya's new Rifton Mobile stander also came in.  It's really big, but should fit her ok for now, and it gives her lots of room to grow.  It doesn't fit through some of our doorways in the house, which I hadn't though about, but it will work great for using during homeschool, in the kitchen, etc...  I love that the girls can be up and weight-bearing, but can also have independence and mobility.  Our Rifton mobile standers are probably one of my favorite pieces of equipment for the girls.  As an added bonus, Deena fits great in Ramya's old Rabbit stander, so all 3 girls will officially have a mobile stander to use. 



I think that's about it for the fun "stuff".  Other than that, we've been chugging along with our therapies and appointments.  We took a break from vision therapy because Ramya was too overloaded and needed a break.  We are still doing her exercises at home and are continuing to monitor her.  So far she is continuing to make improvements but has been less anxious, so that's been big.  Between too many therapies, the holidays, and Deena's surgery, she's been regressing and struggling a lot. We are trying to be very intentional about rocking her and spending time with her, and she also has an attachment therapist that's been helping us work through things.  She got to take a month off of feeding therapy because she was doing well, so that's HUGE!  She's regressed with her eating again, but not nearly like it was before, so we are thankful for those improvements.  She hasn't gained the weight she lost back, but she hasn't lost any more.  We also have a naturopathic doctor helping us with some natural supplements and things to help with her anxiety.  To celebrate her eating, the feeding therapist came to the house and we made brownies together.  She had fun and it was nice to have a positive celebration in relation to her eating, since it's been a struggle for her since, well, before she even came home.




As you can see, we have been crazy busy, which is why I haven't updated for a while.  We appreciate all of your support and prayers, and promise to try to be a little better with updates :)