Monday, May 26, 2014

May Wrap-up

A lot has happened since our last post.  I started to write one big update on everything and realized it was a bit too long.  Instead I am going to break things up into a few posts.

Toward the end of May Casey had some signs of a possible urinary type infection (this was new for her).  Her pedi put her on an antibiotic that Casey did not respond to well at all.  Casey started having a lot of extra thick and huge increase in her secretions.  It got to a point where we were suctioning out in a few hours what we would usually get over the course of an entire day.  She was no longer having wet diapers either.  We were worried she had aspirated on the increased secretions so we called the pedi back.  She changed Casey to a different antibiotic and had us take her to get her lungs checked.  Her lungs looked good and the urine test finally came back clean as well.

Casey's doctor thought that maybe the initial antibiotic started Casey down a bad path, then the new antibiotic was making her already fragile body even more uncomfortable.  We stopped the antibiotics all together and watched to see if Casey's stomach felt a little better and her secretions returned to normal.

I was scheduled to head to Pittsburgh the first week in June and so we watched her really close to see if I would need to cancel my trip or not.  My trip was just a Wednesday thru Friday and by the weekend she seemed to be looking much better.  I decided I could take the trip.

We have been without a Thursday-Saturday night nurse for a while.  Luckily one of our other nurses agreed to cover the Thursday while I was gone so that Tim could still work and get some sleep.  I would have to come home and then do the Friday and Saturday night shift, but at least Casey was looking better and there was coverage while I was gone. 

Monday, May 19, 2014

Casey's Super Fun Weekend

Casey has had a wonderful long weekend.  Thursday got off to a rocky start, but we made it to water therapy around lunch time and that seemed to turn things around.  Her PT is going to teach Tim and I how to do as much of the water therapy exercises as we can so that we do more with her in our pool.  Thursday was Daddy's first time in the pool at therapy.  He and I were trying to learn how to do Casey's favorite trick- flips.  We are getting there, but we have a long way to go.  Hopefully by the end of the summer we will have it all down.  After we got out of the pool we were getting ready to go when I saw a familiar face peeking into the pool area.  Casey's crush, DJ, knew she was in there and wanted to come say hi.  He came in and they chatted about losing teeth and the tooth fairy for a little bit.  She loves him so much and just lights up when she sees him.  He is pretty cute, so I guess I get it.

Friday afternoon Casey's Cappy and Grandpa John (my mom and her husband) came in to town.  We visited for a little while after they got here, but Casey has having a rough evening so we took her to bed a little early.  She needed to get some rest for a very full Saturday.

My grandpa, Casey's great grandpa, had his Honor Flight Meet & Greet (orientation) meeting early Saturday.  My mom and John took him while Tim and I got stuff done around the house and Casey hung out with her nurse.  My sister and her little boy, Riley, came in just after lunch.  They drove in from Dallas and he wore his swimsuit the whole way so that he could go straight to the pool.  My other sister came up and when my mom, John, and grandpa all got back we had burgers out by the pool.  Every time we tried to bring Casey in for a break or to get out of the sun she would just yell and complain until we took her back out.  If anyone was in "HER" pool, she thought she needed to be there too.  She started to get pretty pink and had tan lines after a little while, so we did eventually make her come back in.  I think if it were up to her and Riley they would have been out there sun up until sun down.

Yesterday was Casey's big recital.  She had a packed audience with friends, family, nurses, etc.  She has been looking forward to the big show for months.  We kept her calm and quiet all morning.  She was doing great.  We got there and she was excited to see everyone, she was ready to get her tutu on, things were going very well.  She was the first act to dance.  As soon as they lined up to get on stage she started to get all worked up.  I got her as calm as I could and sent her out with her group.  As soon as she came back off it was right back to suctioning.  She was really worked up about something.  We tried to figure it out, but nothing seemed to help.  We ended up having to get her back home right away.  She did not get to stick around for her trophy or any of the reception.  After we got her home it took a few hours to get her heart rate back down.  All we could guess was she got stage fright or sensory overload from the experience.  She did get to do her dance though, so at least she did what she came to do.

The last of the family went back this morning.  She had a fun weekend, and now back to our normal routine.  We hope everyone else had a nice weekend as well.  Here are some photos from the weekend.  We have part of her dance uploaded as well here.  Enjoy...









Wednesday, May 14, 2014

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. 

Monday, May 05, 2014

The Pool is Done

We were just a few days past Casey's birthday to fill up the pool.  We are all loving it.  Casey has gone out almost everyday for at least a little while.  Its still a little chilly so she is happier putting her feet in and sitting around the pool right now than actually swimming.  I am sure in the next few weeks the air and water will get much warmer and we will have to drag her out of it.

Tim built us some planters to go around the pool.  The plants in them are pretty small right now, but in a year or so they are going to look great.  We started to go with bamboo, but it was more maintenance than we had time to deal with.  If we just let them go it would be too bushy and block the walkway.  We ended up going with Althea instead.  Tim and I both really like these and they grow to be the perfect size.

Casey used to hate to be in the sun, but for some reason she seems to be totally content sitting in the sun next to her pool.  She has been getting really mad if anyone goes out to the pool without her too, little stinker.  She knows its her pool and she does not want anyone using it without her.

Tim created a time lapse video of the installation of the pool that came out pretty cool.