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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, August 27, 2017

A Quick Deena Update

Deena's surgery went well, and we are so thankful!!  It ended up being right about 3 hours, which was a little longer than I expected.  Her orthopedic surgeon spent a little extra time making sure her rod was in just right, so it was a good reason for it to run over. 

We were able to get the anesthesiologist we love, and we were grateful for that.  She's wonderful with Deena and has been there for most recent surgeries, including her dental surgery.  She lets me go in and sing Deena to sleep, which we really appreciate.  I missed so much in her early years, and it means a lot to be able to be there for her now.



The rod looks great and she is healing really quickly.  We were in the hospital for about 24 hours, but Deena was anxious to get home and did much better once we were discharged and she could be with the rest of the family.  




The kiddos wanted to paint rocks to give to our neighbors and it was the perfect down-town activity for Deena.  We left them by our mailboxes and all of our rocks found new homes.  Some of our neighbors even wrote the kids "thank you" notes, which was really sweet.  The kids really enjoyed it.



We also got out on Monday to view the eclipse.  We made viewing boxes and had a lot of fun learning about the eclipse.




We're back to homeschooling and getting back in our groove again.  It feels good to be all moved in, settled, and getting back in to a routine.  Life is good!











Thursday, August 17, 2017

Surgery is Set for Tomorrow

Little Missy's surgery is all set for tomorrow morning at 10.  We are all excited about getting her last rod in place.  Please pray for a smooth surgery, quick recovery, minimal pain, and no seizures for Madi while I'm gone in the hospital with Deena.  Thank you!!


Sunday, August 13, 2017

We are Alive and Well

Wow, I can't believe it's been so long since I've updated!  I just wanted to pop on and say that we are alive and well.  We've had a ton going on, but things are great!  I'll highlight all of the "big" stuff and try my best to catch everyone up.

House:
Our rental house in Tucson was having problem after problem.  We had multiple leaks, found mold in many different areas, had remediation multiple times, and just kept having more and more issues.  The issues kept just getting band-aid fixed, and we got tired of having the same issues over and over.  We finally decided it was best to move and purchase a house of our own.  We moved in May and are loving it!  I underestimated how much work it would be to pack up (again), move with 4 kids, homeschool, and settle.  The house we moved into also had no storage, not even a pantry (technically there was a pantry, just no shelves), and we downsized from our rental.  There were many projects we had to do in order to make it work for us, and we were crazy busy, but it was worth it.  We are all settled now and it feels great.

The house we found is in a quiet little neighborhood.  The roads are nice and flat, allowing the girls to walks and bike ride safely.  It backs up to the riverwalk, giving us miles and miles of paved biking paths to ride on.  Our house has three stories, but also has an elevator.  The kiddos, of course, think that part is amazing.  It's a patio home, so all of the houses are super close together, but we like our neighbors and are enjoying less maintenance and upkeep.  There's also a community pool, park, and dog park, so there's plenty to do.  It's pretty wonderful!



Puppy:
The day after we moved, our new puppy, Chewbacca, aka Chewie, came home.  We were expecting him not to come home for a few more weeks, when he was a little older, but his siblings were all getting picked up and we didn't want him to be alone.  Getting a puppy the day after we moved was crazy (and tiring), but he's a great dog and we love him so much!  He's a double doodle, so he's a labordoodle/goldendoodle mix.  We found a great trainer and are working towards training him to be a service dog.  Even though he is only 4 months old, he's doing great.  He is such a smart boy, and we can't wait to see everything we are able to teach him.  He just got his service-dog-in-training vest and has been going out with us to work on exposing him to as many different places and situations that we can while he's little.  We are having  a lot of fun with him.





Deena Update:
Deena had dental surgery and it went great.  They successfully removed all of the teeth they couldn't save, filled all her cavities, and put in a spacer to maintain the gaps in her mouth.  She came home afterward and was back to her normal, spunky self.  She's amazing!  

Unfortunately Deena had another break.  Her left tibia got a stress fracture at therapy on Thursday.  Thankfully we already had an appointment that day scheduled with her orthopedic surgeon.  They were able to take her early, so we left therapy and went straight for x-rays.  The fracture occurred on her last curved bone that wasn't yet rodded.  We knew it needed rodding, but were giving her the summer to swim and play before straightening it.  It had started bothering her a little here and there, but she was her normal, spunky self.  She was still wanting to bear weight on it too.  We think that it had started to crack under the pressure, because it was so weak, and Thursday it just gave away.  The doctor splinted her and then said we could either push up surgery, or he could heal the bone and we could wait on surgery a bit longer.  We decided it would be best to just go ahead and rod her as quickly as possible.  This way she can heal from the surgery and the fracture at the same time, getting her back to normal quicker.  He also said she would likely fracture again because the bone will be even more curved after this fracture.  We want to minimize her breaks as much as we are able to, so this was another big deciding factor.  Right now we are aiming for surgery Tuesday, but it will depend on whether or not we can get in a rod from Canada in time.  The company said we are able to, but we are waiting on the hospital to approve it all.  If Tuesday doesn't work, it will be Friday.  She's ready and is excited to see how straight her leg is afterward.

Here's a cute video of Deena and Chewie the morning before the fracture....

video

Deena was also granted a bike of her own through Athlete's Helping Athletes.  It should come in about a week or so and she couldn't be more excited!  She has been wanting a bike of her own for so long;  it will be such a blessing!!

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The other kiddos are doing great and are loving our new house and neighborhood.  The move was hard on Ramya emotionally, but she's settling in now and has been a lot more confident and talkative, which is great to see.  We've started homeschooling again and it's nice to be back in a routine.   They are all enjoying our new activities, especially the science experiments and art projects.  I think that's all the big "stuff" for now. Thanks for checking in, and hopefully it won't be so long before I post again!

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!