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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

Friday, May 13, 2016

Appointments, Visitors, and Fun

I am behind on blogging, as usual, but I'm trying to be consistent ;).  Ok, not really, I just operate slightly behind, and thankfully it doesn't bother me too much.

A few weeks back we attended an event for the Tucson chapter of the Arizona Spina Bifida Association at a local gymnastics gym.  The kids had a LOT of fun.  I plan to get them on the wait list for future classes.  An OT leads frequent classes for kiddos with disabilities and is really great with the girls.  Conner has been wanting to take gymnastics too, so it works out great!







 Conner got to take his turn and have an appointment with a vision specialist.  He was pretty excited actually.  I had all the kiddos evaluated in Phoenix, just to make sure that not only their vision was fine, but also their tracking and the such, and Conner showed some gray areas where the doctor thought he may eventually need some vision therapy.  His eyes have a hard time converging when he's reading.  It's not major, but seems to be effecting his reading a bit.  I have noticed as the print has gotten smaller, he closes one eye when he reads, sometimes skips lines, and still reverses some letters. I took him to get evaluated again at a different place in Tucson an they decided that he would benefit from glasses to magnify his work whenever he is doing school work or watching TV.  He also is going to do 8 sessions of vision therapy.  He is super excited for his glasses and very happily wears them.







Madi's new neurologist wanted to do a sleep deprived EEG to see how she is doing and possibly switch up her medication since she's still having a decent amount of seizures, and her seizures are hard to stop.  He wanted me to give her about half the sleep she normally gets.  At first she thought staying up and watching movies with me sounded amazing, but she is my girl who loves her sleep, and the novelty wore off quickly.  She did it, though, and I was very proud of her! She did well during the EEG and had the nurses all giggling, of course.  The doctor said her patterns have remained the same.  She has a lot of mis-firings, most stemming from the left-hand side.  We discussed new medication for her and I told him my concerns with picking a new one.  She only has one functioning kidney, so it's very important to have her on something that will not cause any kidney damage.  She is also terrified of blood draws, so I wanted her on something that did not require frequent level checks.  We decided to try lamictal since it works well with focal seizures but also helps generalized seizures.  There is a risk she may have a rash/reaction, so we are taking our time and getting her up to the full dosage very slowly, over a span of 4 weeks.  At that time we will see how she is doing and hopefully slowly wean her off the Keppra.  The keppra makes her moody, so I am hoping the lamictal helps her there, though I'll take a moody girl with a happy kidney over anything that may harm her kidneys any day!  After the EEG I took her out to eat and she chose Panda Express since we do not usually eat there (gluten sensitivities) .  She was pretty excited!  I also got a coffee (because momma was sleep deprived too) and she convinced the barista to give her a cup of whip cream with chocolate on top.  This is a rare treat for her (due to her dairy sensitivities), plus they gave her a huge cup, so she was super excited! 

(She looks grumpy but really wasn't.  She was in a good mood but was just tired)







Last week we had visitors and really enjoyed our time with them!  Our friends Darlene and Samuel from homeschool co-op in Phoenix came by to visit on their way to see family.  They brought us a pretty lavender plant and some gluten-free yummies and the kids had a lot of fun playing.  It means a lot to the kiddos to see a familiar face!  My parents also came in for a night for Mother's Day.  We had planned to stay in Tucson since we have to be in Phoenix again at the end of May, so they decided to come here.  They hadn't been here since the end of last year and the kids were really excited they visited.  





Deena had her follow up with the orthopedic surgeon and everything looks great!  Her rod is in perfectly and her bone is healing nicely.  He said if she felt good she could take off her splint, which made her VERY excited.  We kept it to put back on if she has any pain, but so far she says she feels great.  I'm trying to keep her going a little bit slower than normal while it continues to heal, but she's a feisty little cutie and not always great at that.  





Other than that, the girls are liking our new occupational therapist.  She seems pretty proactive and works well with the girls.  This week she brought fun dress up clothes to practice dressing and the girls loved it!  I think I have speech therapy lined up as well, though finding physical therapy is proving to be a challenge.




Oh, and this morning we woke up to cookies at the front door from my dad (AKA papa) and then found that all our butterflies had emerged from their chrysalises so we got to release them.  The kiddos were pretty happy!  David got me an in-home massage for Mother's Day and she came today, so I had a pretty good day too.  Tomorrow David's brother, Mark, and his family are coming to Tucson for a visit.  We are really looking forward to spending time with them and are excited for more visitors. 




I think that's all for now!  I hope everyone has an amazing weekend!

Tuesday, May 3, 2016

Introducing the newest member of our family...

...  The Beast.



It's a used 2015 Ford Transit w/ EcoBoost.  It doesn't have any accessibility yet but we will get there.  That's the next step!  We purchased it from a dealership in Texas because David really wanted the EcoBoost and it was difficult to find used.  



It's huge and I'm still not good at parking it, but I'm trying to learn.  The best part??  It fits 3 wheelchairs, 4 kids, 1 momma, 1 dad, and there's still room for a few friends and groceries!  It's amazing!


We are so excited to finally have something that fits us all!  


Thursday, April 28, 2016

Hope is Home

It's a miracle; Hope is home!!  She was found 3 miles away yesterday in a lady's tree.  She got her and called the humane society, where we had done a report, and they connected us.  We went and got her right away.  She was thirsty and hungry, but so happy to be home!  When I put her in her carrier she was, quite literally, jumping up and down she was so excited.

We have so many predators in our area and it is very uncharacteristic of her to fly off.  She's a very bonded bird.  We thought we may never see her again and were so, so sad.  We are so thankful that she was found and is home safely!  It really is a miracle!!!




Tuesday, April 26, 2016

Lost Sun Conure Bird in Tucson

Hope got out and we can't find her.  The kiddos are devastated :(.  Please share this post and help us find her!

"Hope"
Female Sun Conure
Lost at 1st and Orange Grove in Tucson, AZ 
Fully flighted and very friendly
 
video
 
 
 
 
 
 



 

Sunday, April 17, 2016

Lots of Updates from our Casa

I can't believe how long it's been since I've been on to update.  Life just flies by!  One of my goals lately is to take care of myself in small ways, so I have been using the treadmill again at night.  It's a great way to reduce stress and I love it, but it also leaves me less time at night to accomplish things.  After using the treadmill and doing house work I pretty much fall in to bed, but it's worth it!

The last month has been busy.  We are loving going new places in Tucson and have been spending a lot of time outside enjoying the weather.  We've been meeting new friends and having play dates, which is always nice.  We've also had some trips to Phoenix, appointments, and things like that.

The Tucson Air Show








The Desert Museum







Family pampering day.... Deena's first manicure at a shop and Conner's first pedicure







Last month when we were in Phoenix for Easter we also saw the endocrinologist.  She submitted all of the paperwork to start Deena on her PAM infusions (osteoporosis medicine via IV to help with bone density) and Ramya also got her quarterly Lupron Depot Pediatric injection.  We are keeping our endo in Phoenix, even though it will mean a quarterly drive, because OI (osteogenisis imperfect) is her passion, and you just don't replace a doctor like that! 

While we were in Phoenix we also celebrated Ramya's birthday with family.  She requested a party with just family, so that's what she got!!  Since we don't have a house in Phoenix any more we had the party at the park.  She wanted a princess theme and Indian food.  It was a lot of fun!







Madi and Ramya had their yearly renal ultrasounds and appointments with their urologist.  Both the girl's kidneys look great and we don't go back for another year!  Yeah!  Since we had to drive to Phoenix for the appointment, we decided to take advantage of our drive home to go to the ostrich farm.  David met us there since it's only 40 minutes away from where we live.  The kids had SO much fun.  I think we will make it a tradition!








Deena has exciting news; she got her ears pierced!  She has been wanting them since before she came home, but we wanted to wait until we could take her, and also until she was ready to let me clean them and take care of them.  She did amazing and she is so proud!






In not-so-fun news, sweet Deena was in the hospital with a fractured femur on Monday.  After leaving the teaching store, David bent down to lift her out of her stroller.  She must have leaned forward and she just kind of rolled forward out of the stroller (David said like a little ball).  He tried to catch her but she was in a slippery princess dress and he couldn't get her in time.  The stroller is very low to the ground and has no bars on the front, which I purposely purchased so that we wouldn't bump her legs getting her in or out, so she didn't fall far, and she didn't hit anything, but somehow she fell just right and ended up with a fracture.  David said one leg went behind the other and then she sat on the ground, so we think it was just from the pressure of one leg on the other.   It was terrible even though it was an accident.   It's her first big injury for her since coming home, and we all felt awful, but especially David.  We try so hard to lift her carefully, always give her support, and make sure she's safe, but one of the hard things about OI is that fractures are a part of life, and sometimes it's the smallest things that cause breaks. 

Her left femur used to have a rod in it, because it broke frequently, but right before coming home they took it out.  You never take rods out once a child/adult is rodded though, because the bones are thinner there after having the rods to support them.  Unfortunately, though, they did remove it, and we had been planning to place it back in this summer.

Although it was an awful and unfortunate accident, there were definitely some good things that came out of all of it.
  1. Her orthopedic surgeon, who worked at Shriners for 11 years and has lots of experience with OI, PAM treatments, and rodding surgeries, was on call the night we went in to the ER.  He saw her name come up and stayed 2 hours after he was off to be able to review her x-rays.  After reviewing her x-rays the initial plan was to set the bone and then admit us for a night pain management.  After talking, however, we decided to go ahead and use that time to put the rod back in, since we had to be admitted anyhow.  His schedule the next day was pretty full, though (so full that he already had to plan to delay another surgery because he just couldn't fit it in), and he didn't want us to be sitting in the hospital, so he asked if we were ok with just doing the surgery right then.  We said yes, he left to prep, and we went off to surgery prep.  It was getting late so David took the other kiddos home to bed and I stayed with Deena.  They took her back right about 10:15ish. It was a quiet night and I was the only person sitting and waiting in the waiting area.  It gave me time to go through all her medical files again and begin writing down the dates of all of her breaks and procedures so that we could get a better picture of her past medical history. Just after 12:00am the doctor came to talk and said everything went really well.  He got the rod in just how he wanted it.  He left and then they brought me back to be with her.  She was sleepy and slept most of the time.  It took a while for us to get a room, but at about 2:30am we went up and got settled in.  Thankfully Deena slept through it all. I was exhausted, but nothing a little coffee couldn't fix!  The next morning when she woke up she was doing a ton better and said she wasn't in pain.  We kept on top of her pain meds to make sure she stayed comfortable, and she handled it amazingly!
  2. I talked with Dr. Vincent and asked if we could do her first PAM infusion while we were in the hospital.  The first infusion is done in the hospital, and then the rest at home.  Since we were going to be there anyway, it made sense to go ahead and start.  Dr. Vincent actually had her infusion paperwork with him, because he brought it so he could ask about the steps to starting it while he was at the hospital.  It worked out great because they were able to start working on getting it in the pharmacy and approved through insurance.  They weren't able to get it all done Tuesday, but Wednesday they were able to give her first infusion before they discharged us. She handled the infusion well and so far hasn't had any side effects.
  3. Another blessing out of all of this is the time it gave Deena and I to continue to work on bonding.  I know that she realized the difference it made having her momma there with her.  She told me she loved me more times in a day than I have ever heard before and wanted to hold my hand and have me play with her hair.  Though being in the hospital and surgeries are no fun, it reiterated for her that I love her and I am here for her.  She didn't have to go through the pain alone and she had me right there to help her and advocate for her.
  4. They didn't have to remove her earrings for surgery.  This might sound minor but she was SO proud of them and was devastated when they said they may have to take them out.  They were able to cover and tape them instead, and I am so thankful!  Sometimes it's the little things that make a big difference for a child when they are going through major medical stuff. 

My sleepy little warrior princess


She was SO excited for visitors! 


We made great friends with Child Life and love all the fun stuff they brought us to do






They ordered a wheelchair for her to use at home/out-and-about so we could keep her leg elevated


Reunited and it feels so good!




We have been home since Wednesday evening and Deena is doing remarkable!  She was SO excited to leave the hospital.  It was hard on her having the rest of the family away, though they did come visit, and she kept asking me when we could go home.  Her eyes lit up and she got super excited when I told her they were sending us home. 

Deena is already back to her spunky self, her appetite is great, and she seems to be healing well.  We have a follow-up appointment with the orthopedic surgeon in 4 weeks and we will take x-rays at that time to check how her healing is going.   She was getting restless and kept asking to go in the car, so we ventured out to Costco on Friday and she was very excited!



We also went to Church today and she enjoyed getting out and being around other people.  We still bring her in to service with us anyhow, so I wasn't worried about safety.  She enjoyed singing and cuddle time on my lap.



In other news, we found an occupational therapists and are excited to get back in to the swing of things.  Apparently finding in-home therapists, especially speech and PT, is insanely hard in Tucson. I have spent endless hours on the phone calling companies and trying to find openings.  I've even called outpatient therapy centers and everywhere has a wait.  I'm not going to give up, and we are glad to at least be able to start with OT. 

Oh, I also forgot to update and say that Deena is officially on our primary insurance!  Yeah!!  We have already met her $2,500 yearly deductible (it's per person), and I am so so so thankful we got her on in time for the surgery and hospital stay.  Our bills may still not be pretty but it will make an enormous difference.  On top of that, they added her at the rate they would add any child, even though I disclosed that she has OI.  That right there is an amazing blessing!

I think that's all of our big updates for now.  We are on the hunt for a bigger vehicle still, and I think we have decided on a Ford Transit with a turney seat for Madi.  She's a little over 80 pounds now, so this will help immensely with transfers in and out of the car.  Please be praying that we find just the right car for our family.  We have such unique circumstances it's been very difficult to figure out what will work for our family.

For those of you who are friends with me on Facebook, or who knew we were in the hospital, thank you for praying for our sweet girl and for checking in.  God has been taking care of us in big ways, and we are so thankful!