Updates

It seems like we have been going nonstop for a few weeks now.  All good stuff, but just nonstop.  We have been spending as much time out back and in the pool as weather allows.  Casey had a nasty ear infection last week so she had to resort to just putting her feet in, but she was still out there every chance she got.  Mother’s Day weekend had BEAUTIFUL weather.  It was warm, sunny, perfect pool weather.  We had Casey caked in sunscreen and after nearly an hour she was starting to look a little pink so we came back in.  Having her pale skin in the sun is something we are trying to do slowly and safely.  She is so hot natured already that I worry she would be miserable with a sunburn. 

The weekend before Mother’s Day Casey was invited to a Frozen birthday party for one of her new friends in the neighborhood.  The mom had a snow cone truck instead of a birthday cake to go along with the theme (such a creative idea).  We discovered Casey is a BIG fan of snow cones.  The following Tuesday she had dance and we stopped at Sonic for a drink on the way home.  We ordered her a raspberry slushy and she was thrilled.  I gave her a little but then put the lid back on while we drove home.  She yelled at me when I put the lid on to be sure I knew she was not done yet.  I think there will be lots of snow cones and slushies this summer. 

My uncle was in town for most of the following week.  He lives on the East coast and comes into town when he can to spend some time with my grandpa.  He had not been in town since my grandma passed away more than a year ago, so it was really nice to see him.   

On Friday we had some friends over and Casey got to hang out in the pool with some other girls her age.  She had a great time and did not want to come back in.  It was a little chilly though, so the other girls were freezing (Casey just had her feet so she was okay).  Saturday we went to the annual OI Foundation walk.  We don’t get to go every year, but this is always a good time when Casey is up for it.  We actually met a family at the birthday party the week before that were also at the walk.  Their daughter is in the process of getting a diagnosis, and OI is being considered.  The walk was in the new inclusive park this year.  Casey got to swing some while we were there.  I hope they have it in the other park next year.  The other park (where they usually have the walk) had a clear path around a little pond, a pavilion, etc.  It was okay in the inclusive park, but it wasn’t closed for the event so it was a little crowded.

On Mother’s Day we hung out in the pool a little and just relaxed.  It was a nice quiet and uneventful day (just like we like it). 

Casey has been having an increase in seizures the past few weeks.  We talked with her neuro yesterday that increased her medication some.  They are thinking it may be related to the ear infection.  We will go in next month to check in on everything.  Casey has her salivary botox appointment next month too.  We are trying it with ultra sound this time, so hopefully it will work. 

This weekend is Casey’s big recital!!!!  We can not wait.  I love watching her dance.  My family is coming to town to do a combination celebration.  We will celebrate Mother’s Day, spring birthdays, and then attend Casey’s recital.  On Saturday, some of my family will be heading to a very exciting meeting.  My grandpa is going on the Honor Flight later this month.  This weekend is the meet & greet where they will get all of the information they need.  I am so excited for him and can not wait to hear all about it.  I think he is going to have an amazing trip.  We are looking forward to seeing everyone this weekend. 

After this weekend I think things will quiet down for a couple of weeks at least.  I have a conference coming up in Pittsburgh for a few days in June.  Tim will stay home for work and to help the nurses with Casey.  This will be the longest I have been away.  I am nervous and excited at the same time.  It will be great to be able to meet other families and tell more people about my organization, Mommies of Miracles (MOM). My partner, Anita, and I as well as our other admins, Paige and Tiffany, have worked so hard to make MOM what it is today.  We are starting to get more exposure and have been growing a lot.  I am really proud of the work we are doing and the organization we have created.  Anita and I will be at the conference together with our friends and sponsors from Neotech Home Health

I think that is about it for updates right now.  We hope everyone is doing well and getting ready for what we hope to be a wonderful summer. 

This entry was posted in Casey.