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


This entry was posted in Casey.