Her Very Own Chili's

For anyone that does not already know, Casey is a big fan of Chili's.  Anytime she gets to go out to lunch she always picks Chili's.  Casey has always done her own thing.  I think most 6 year-old girls would pick Chuck E. Cheese or McDonalds.  Not my Casey, she wants Chili's. 

One of Casey's favorite nurses, Maritza, has been with us off and on since Casey was 2.  Maritza is moving back to Houston at the end of the month.  We are very sad to see her go, but she has promised to come visit.  She has family in Austin so I think she will visit as often as she can.  She kind of loves Casey too, so I am sure she will want to visit as often as she can.  Casey wanted to do something special for her so we have been planning on taking her to lunch at Chili's (of course) today.  Casey is still having a really hard with pain and crying. 

This morning Casey said that she wanted to go to Chili's.  We got her dressed and ready, but it was not looking good.  The entire time we were getting her ready she just cried and cried.  Then after she kept crying and required non-stop suctioning.  Rather than risk her getting worse, especially since she never does well in the car, we offered to bring Chili's to her. 

Casey doesn't eat (at least not in the traditional sense) so the idea of take-out is a little odd.  She loves to sit at the table and look at the menu.  We called in an order then I went to pick it up.  I explained how much she loves Chili's but that she wasn't up for going out.  They let me take a full size menu home for her to read while we ate.  When I got home Maritza had made a Chili's sign just for Casey.  Casey LOVES it.  She was so happy looking at her sign that she didn't care about sitting at the table anymore.  Now Casey has her own Chili's. 

We still don't have any answers on the crying and pain.  Her neuro is out of town this week, but the nurse is talking with the other doctors to try and come up with something to do for Casey while we wait for the doctor to get back.  We expect them to call back today with some ideas and a plan to try.  I really hope what ever they suggest works.  It may take a few tries to get it right.  As long as are finally going in the right direction I will be happy.

Updates

Casey finished her antibiotic for the MRSA ear infection a week ago Friday.  We were very optimistic that when she finished she would go back to her usual happy self.  Last Saturday she did really well.  She was a little fussy early in the morning,  but only for about an hour.  After that she was in a great mood.  We took her to the CLU Day to Play Music group and she had a lot of fun.  She got to meet some new friends, sing songs and dance.  After the play group we went with another family (that also has a little girl very similar to Casey) to grab lunch.  Casey stayed awake and just enjoyed hanging out at the table.  All in all Saturday was great.  We saw that as the medicine was done and she was getting back to normal.

Casey had a rough morning, but good afternoon the Wednesday before Father's Day.  We decided to take advantage of her good afternoon and get her out of the house for a little while.  She went shopping.  She picked out her own present to give Daddy.  She really loved Bed Bath and Beyond.  They had a fan display with all the fans blowing.  I think she could have sat there in the wind all day.  She does like it when it's cool (or cold even). 

Sunday (Father's Day) however, she was back to crying.  We spent all day Sunday trying to do anything we could to get her to stop crying.  It's not her usual little uncomfortable cry that comes and goes, this is a very pathetic ongoing cry that kills us.  She would take little naps (15-20 minutes) off and on Sunday, but between naps she cried most of the day.  She would not let us anywhere near her ear.  We thought maybe the infection was still bothering so we called ENT.

Casey's ENT was out of the office Monday but got us right in on Tuesday.  We told him about her crying and how guarded she has been with the ear (or course she didn't do any of this in the office and made me look like a total idiot).  He checked her out and said the infection looks much better.  It's not 100%, but it should not be causing her to cry in pain like that. 

Wednesday she spent the entire day throwing up and still crying- so we decided maybe she had a stomach bug.  The throwing up stopped that evening and Thursday she was still crying in the morning.  She took a good nap and woke up in a much better mood.  We took her to water therapy and she had a great time.  She was in a great mood for the rest of the day Thursday and Friday. 

This morning she was a little fussy (not like she had been) and then after having a hard time with her BM seemed to be calming down.  The calm was short lived.  She has been crying again all day today.  We don't know what is going on.  The last time I remember her doing this horrible cry - uncontrollable/unconsolable - was a few years back.  She used to cry like this every night and not sleep.  Finally her neurologist started her on a medication for neuropathy pain.  That medication was a miracle drug for her.  She started sleeping, stopped crying, it was exactly what she needed.  A couple years ago they upped her dose but she has been on this dose for a while now.  I have been doing some reading and it looks as though MRSA could have caused her neuropathy pain to increase.  Or it's possible she has outgrown the dose.  My uncle has to take neuropathic pain medications as well and he has had a horrible time with medications.  He finds one that works, then months, to a year or so later his body stops responding to it.  It looks like I will be calling Casey's neuro first thing Monday. 

Casey was supposed to go to a friend's birthday party today.  We were all excited about it.  It was a pinkilicious party and Casey was going to be all decked out in pink from head to toe.  We had to cancel last minute.  It seems like we are having to cancel so many things over the past few weeks/months.  We have got to get this figured out and resolved soon. 

I'll try to post after talking with the neuro this week.  Hopefully we can get something that will get her over what ever it is that's bugging her.  It's just so hard to know since there are so many things it could be.  We hope that everyone is doing well. 

D-R-A-M-A

My goodness, I think Casey must be hitting her terrible two stage.  It is nonstop drama around here.  A month or two ago she master this new, totally pathetic cry.  She has learned that the louder she does this the quicker we respond.  I know, don't respond.  I wish it were that easy.  With her airway issues, in addition to noises, every noise pulls up secretions.  If we do not respond and clear the airway it can go from pathetic cries to a very sick little girl, very quickly.

As I mentioned in the last post, we have been battling a double ear infection.  This has given Casey one more thing to cry about.  Her culture's came back with MRSA (Staph).  We had to change drops and antibiotics to kill the germ.  Switching means we had to start the cycle all over again.  This antibiotic is a new one to us, and instead of her usually runny & frequent BMs we are having the opposite problem now.  She has been trying to potty, and instead throwing up a lot more than usual.  We are working on trying to balance that out.  We will probably get it figured out about the time her medicine completes. 

Casey had a fun weekend planned, but instead we had to stay home and lay low.  Her friend was having a birthday party on Saturday.  Casey spent the morning crying and whining so we stayed home.  It was a good call, about the time we would have been at the party Casey started having a few seizures.  Not a good day.  She seemed to be doing better Sunday morning.  However, my family came in for lunch and she was not happy.  As soon as people got here she started crying.  The entire family commented on how pathetic the cry sounds. It was only getting worse and she was starting to have seizures again, so I had to take her to a quiet room in the house and just hide out until everyone was ready to leave. 

Our nurse case manager just came by for her monthly paperwork/check in and Casey started the crying again as soon as she tried to talk with the nurse that is here.  She just has no interest in having people in the house right now. 

I hope that she is feeling better in the next couple of days.  We have a fun playgroup planned for Saturday.  I would hate for her to have to miss out on another fun activity. 

We hope that everyone is doing well and enjoying the summer so far.

My First Grader

Casey is officially a first grader now.  I can't believe she is already done with kindergarten.  She is growing way to fast!  The last few months of school were tough.  Casey had a lot of medical issues (nothing serious) that made her miss school.  It seemed like we finally got back on schedule and then school was done.  Her last day went really well.  Casey was very excited and got all dressed up.  She picked out a dress, did her hair, she picked out a bunch of accessories (Casey is the queen of accessories) and she was ready to go.  She held her head high as she made her way to class.

When Casey got to class her teacher had all kinds of treats planned.  Casey got extra time in the princess tent (sensory area), they read stories, made pictures, all of Casey's favorite things.  Her teacher sent her home with a basket full of art supplies too.  Enough to keep Casey busy for a while. Thanks to my addiction to Pinterest, I found a really cute teacher gift that even I (the craft challenged) was able to make.  Casey loves to give people presents.  I hope that her teacher liked it.

Before class ended there was a knock on the door.  The kindergarten class that Casey went to the library with wanted to tell her to have a good summer.  The way her nurse described it was pretty cute.  They all wanted to see Casey one more time before the end of the year.  My little social butterfly.

Casey has been having a rough time over the past few weeks.  She had an eye infection that really did not want to clear up.  It is not 100%, but finally looking better.  As soon as we were getting that under control she got an ear infection.  We took her in to see her ENT on Friday, and sure enough both of her ears are infected.  Usually it is just the left ear that has the cholesteotoma.  However, this time, the right ear is much worse.  We started drops and she is on another round of oral antibiotics as well (oral, but given through her gtube).  Antibiotics are so hard on her tummy. 

Other than her eyes and ears Casey has been doing pretty good.  She is excited about the summer.  She has a few birthday parties to go to this month.  She is loving being back in music therapy.  We just found a special needs dance program in our area that she is going to start in the Fall.  I am sure we will come up with some other fun things to do while she is out of school.

We hope that everyone is doing well.  Check back soon to hear about Casey's summer adventures.