Updates

March flew by, I am not sure how that happened so fast.  Casey is doing okay.  She had a rough time in the middle of March with some respiratory stuff that led to having her on and off oxygen for a couple of weeks.  Nothing serious though, so we were able to avoid the hospital.  We thought for a little while that we were going to have to put her on bipap for a few nights, but as soon as she heard us talking about she helped us clear out her little lungs.  She really HATES bipap.  We are waiting until we make it 1 month without a GI bleed before starting up the shaky vest again.  It may have helped or even prevented the crud in March, but it seems to make the bleeding worse so we are still holding off.  Hopefully we will be able to get there soon.  We have not made it a week yet, so the month goal may still take a few months.

Casey saw a few doctors in March.  Her Cappy (my mom) came and hung out over spring break to help get her to and from appointments while her nurse was on vacation.  Casey is officially 40+ pounds now- WOW!  You can tell too, she looks much fuller and more healthy.  Lifting and moving her are getting harder by the day.  It's good though.  She worked for years to finally get some weight, so I will just figure out how to lift and move the extra pounds.  She saw a new Physical Rehab doctor as well.  We liked the one she was seeing, but they had us move to a new guy that specializes in botox for the salivary glands.  We tried them before (years ago) with no improvement.  This guy uses ultrasound to make sure that the salivary glad is injected and that the botox is not ended up in another area.  We will give it a shot and see how it goes.  I think it's scheduled for June sometime.  He also suggested that we get Casey on with an endocrinologists.  We had been thinking about calling one for a while with her showing some signs of precocious puberty.  Since she turns 8 next month and it's not full puberty yet I am not sure if this is the proper diagnosis or not.  It's pretty common in kids with brain injuries, and doesn't change her care plan much (other than extra baths and potentially hormone injections in the near future).  The doctor that suggested endo wants us to see them for Casey's bone health.  When he did his exam and started moving her arms we jumped out of our seats to make sure he did not force her to bend since she will break.  He said that we should get a bone scan that can tell how how brittle her bones are (or how severe the osteopenia is).  Then the endo offers a quarterly infusion for patients with brittle bones that helps to strengthen them.  Casey has a few friends that get this infusion.  I have heard that the first years worth of infusions are very painful.  If Casey is on the line of needing it or not we will put off the infusion.  If it is something that she needs and they can assure us that she will benefit, then we will have to consider it.  Until we know more from the scan and do more research on the actually risk/benefits of the infusion we are not ready to make any decisions just yet.

The pool progress is moving.  There was some bad weather that caused some delays, and the crew was held up at another job for a little while as well.  I think you kind of expect delays on projects like this though.  They are back today and working on the next phase- there is still a good amount to be done.  It will be at least a few more weeks.  I do like to look outside and see progress- it makes me very happy.  Now, I must get serious about the diet to be swimsuit ready.  Thank goodness for privacy fences and landscaping :)

Casey started back to dance in March as well.  She is so happy at her dance class.  The first day back she talked the entire time.  You could just tell she was trying to tell everyone how happy she was to see them and all she had been up to since they saw each other last.  I can not tell you how full my heart is when I see her at her dance class.  She is excited to be there, her friends are all excited she is there, she is like every other 7 year old girl.  It really is one of my favorite things to see her do.  This year's recital is coming up soon.  We can't wait!

This weekend is the special needs Easter egg hunt at the accessible playground.  She should have fun with that.  Lots of her friends will be there.  After that we have to start getting ready for her birthday.  That's about it for now.  I will get some good pictures at the egg hunt and post those soon.  We hope everyone is doing well.

As of 3/31

Trip to the Aquarium

After a really long and hard winter Casey finally had a long over due good week.  She was up for playing with her toys, she worked hard for her teacher and therapists, she went to all of her scheduled appointments, and she finished up her week with a visit to the new aquarium.  She met some of her friends there and they all seemed to really enjoy themselves. 

When we first got there we walked around the gift shop a little.  While Casey's nurse and I kept showing her stuffed animals, toys, etc Casey kept finding the jewelry section.  Every time she got excited in the gift shop it was when she saw sparkly bracelets.  My little diva.  After some shopping, Casey saw her friends coming in from the parking lot.  She got pretty excited when she saw them.  I love when she gets to spend time with her little friends.

The aquarium is really close so when they had half price passes we bought a family pass for the year.  We had hoped to go much sooner, but Casey has just not been up for it.  Its a very small aquarium, but just right for Casey.  I think a big place would be too much for her.  They had a good assortment of tanks with different types of fish, birds, snakes and lizards.  They only had 1 turtle out when we were there, hopefully there will be more turtles next time.  The octopus was not out this time either.  Casey liked all of the different fish exhibits, but she didn't seem to care about the reptiles and she is officially NOT a bird fan. 

The let the kids come into the bird cage.  While Casey and her friends waited their turn Casey was very excited and you could tell she wanted to go in.  At first she was fine.  We would hold the birds so she could see them up close.  After a little while one got past her nurse and I and landed on Casey's head.  She kind of freaked out.  We got out of the cage pretty quick and she calmed down.  I don't think she will be revisiting the birds anytime soon. 

They had 2 big tanks.  One tank had sharks and the other had manta rays (as well as other fish in both).  Casey LOVED watching the manta rays. They would come right up and smile and splash around.  We had to drag her away from that tank.  She liked the star fish and jelly fish too, but the manta rays were by far her favorite. 

They welcome kids to touch the fish and feed them (at certain times).  One of Casey's friends was very brave and touched most of them.  Casey and her other friend were both in wheelchairs, so they were not able to get to the fish to touch them.  One of the staff members was nice enough to bring a star fish to them so that they could touch them as well.  That was pretty cool.  The place was easy to get around in the wheelchair, the exhibits just didn't really convey to people that could not bend/climb over.  As long as the staff is willing to help those that can't get there it's all good.  The lady that helped was very nice and more than happy to bring the star fish to Casey and her friend.

As we would take Casey from tank to tank she would yell at us to take her back if she wasn't done looking yet.  Next time we will have to take her food and let her just sit at the manta ray tank all day.  

The pool crew took most of this past week off.  The weather has not been cooperative so they have to wait for a dry patch of days to do the concrete.  Hopefully they will get back on track this week. 

In other updates- Casey had a doctor appointment last week and she has officially hit the 40 pound mark.  We finally got her chair fixed up too.  New handle bars and a storage tray make it SOOOOO much more usable.  Casey's seat is still the same, but to her entourage it's a big deal.  Her nurse and I were so excited to take it out for the first time and Casey thought we had lost our minds. 

It's spring break and SXSW this week.  We will NOT be going anywhere near downtown.  Casey's Cappy (my mom) is going to come in for a few days later this week.  Casey is looking forward to her visit.  Other than that we hope to just keep her well and hope the nasty winter is behind us.  Here are a few pictures from her fun day- enjoy :)

Casey watching the manta rays

More manta rays

Touching the star fish

"In" the tank

Casey's nurse petting the manta ray

Before the bird mad her mad

Watching the sharks

Checking out the jelly fish