Updates

A lot has happened since our last post.  Casey has started school, and dance.  I have been wanting to update on these things, but at the same time that Casey was starting all of these new things, we were also saying goodbye to my grandmother (see previous post).  Needless to say, it has been a very emotional (good and bad) week and half for us.

Casey started school last week and has a new teacher this year.  The new teacher seems pretty nice.  She has not worked with medically complex kids like Casey, but she seems open to learning from Casey's nurses and therapists.  Casey was really excited about going to school and had a good first day.  She was excited to see her princess tent and some of the therapy toys she really likes.  I think it will be a good year for our little first grader.

This week Casey started dance.  She had the tutu and ballerina bun and was ready to go.  She was really funny.  There was a little girl with a toy microphone that kept putting it in front of Casey.  As soon as she would Casey would sing and sing.  She does love to sing.  I think she had as much fun singing with her new friend as she did dancing.  She was so excited all day, then gave it everything she had.  On the way home she crashed.  I think she is going to really like dance.  Her grandma was in town and got to go with us.  I think she enjoyed it as much as Casey did too.

Casey has been having a rough couple of days.  Sometimes when her schedule is out of whack she has a hard time adjusting.  We are going to have a quiet relaxing weekend.  Hopefully that will get her back to her usually spirited self.  Next week she has music, dance, school and therapies scheduled.  It will be the first full week of her new schedule.  I think it may take a few weeks to get into the groove (for all of us).  She is only in school for 2 hours 3 days a week though, so it's not too bad.

We hope that everyone is well, and thank you again to everyone for all of your support while we were going through a really hard time saying goodbye to my grandma.  We appreciate all of the kinds words, cards, and prayers. 

Casey working hard with OT on her first day of 1st grade

Casey with Mom & Dad on her first day of 1st grade

Casey's first day of dance with some new and old friends

Casey wiped out on her way home from her first dance class

Gone but not Forgotten

Yesterday was a very hard day for our family.  Casey's great grandma, Evelyn Creel, was laid to rest.  She was 86 years old and the best grandma (mom, aunt, friend, wife, great grandma, etc) that you could ever ask for.  I have so many wonderful memories of her over the years.  She and I were very close.  She loved Casey with her entire heart as well. 

About a year ago they moved into assisted living just a few blocks from our home.  Partly they moved so that I could help get them to and from appointments and things, but mainly they moved to be able to be closer and spend more time with Casey.  I know she will watch over Casey now and that gives me a little peace. 

I could go on all day about how much she was loved (is loved) and how much we will all miss her, but I think instead I will keep this post short and keep those memories for myself to cherish when I find myself missing her.  Thank you to all that offered your support, prayers, and love to all of us (especially her) over the past week and half.  It has been hard, but all of the support from family and friends has helped us through it. 

Updates

Casey has grown so much over the past year and we finally decided it was time to look into a big girl wheelchair.  We have been talking with a few different places about getting one made and finally placed the order today.  Surprise, it's going to be pink and purple.  I bet no one could have guessed that.  It will take about 3-4 months.  I think it will be much better.  Poor Casey just hangs out of her current chair.

School started Monday.  However, the teacher has Casey on a delayed start.  The first few days is so crazy that they like to wait to bring Casey into the mix.  She will start Friday.  The plan is to do 2 hours a day 3 days a week.  We may have to play with the schedule some to get it just right.  Last week Casey got all ready.  We took her shopping.  She loves to pick out her clothes.  This year it was all about the sparkle.  She has a very glittery purple shirt for the first day.  I think she MAY like being the center of attention, just a little bit.  Her nurse, Jodi, used to do hair and so she brought in her scissors and gave Casey a fresh new cut for school.  They did mani and pedis last week too.  I told Tim that I think we have hot the nurse lotto.  Casey really has some amazing nurses that take great care of her.  This week Casey is getting the last of her lazy days done, then it is back to a full schedule for her.

Casey starts her ballet class next week.  She has been practicing the ballerina bun, and picked out some tutu skirts on her shopping trip.  I think that is about it for now.  I will try to post pictures of school and dance next week.  Until then, we hope everyone is well.

Casey @Chili's

Casey at one of her favorite places - Chili's.  We were there for an Energy for Life fundraiser.

Happy Birthday, Daddy

We had a great weekend.  Tim turned 40 on Friday.  For anyone that does not know he is the youngest of 7 (YES, 7!!) boys.  All but one was able to come into town to surprise him.  His brothers and mom let me know they were coming so I could help coordinate things.  I took Tim to eat and they were all sitting in the restaurant when we walked in.  They were in the back and before we could get all the way back Tim spotted them.  I think he was really excited & happy.

We later had a party where Tim, his family and I joined up with most of Tim's friends for a night full of video games.  A perfect celebration for Tim.  There is an old school arcade in town that has a party room.  It was a lot of fun.


Casey wanted to go to the party.  She is such a daddy's girl.  We convinced her to stay home with her nurse.  They had a PJ party instead.  She did get to spend time with family too though.  Everyone came to the house on Saturday.  We picked up some good Texas BBQ (a must for any out-of-towner) and spent the day visiting and just enjoying time with family.  This weekend was the first time in MANY years that this many of Tim's brothers were all in one place.  With that many, it can be a challenge to get everyone together.  We took some pictures.  Usually Casey does not cooperate for photos.  She did great though.  She didn't fuss, get all puffy, or anything.

Everyone had to be at the airport bright and early Sunday morning.  It was a short visit, but it was great.  We wish the wives and kids could have come too.  Hopefully we can see them all again sometime soon.

This weekend my family is coming in to town.  They usually come every couple of months.  My mom makes a GREAT key lime pie.  I can't wait to dig in :)

Casey's dance class starts soon.  Stay tuned, I am sure I will take a ton of pictures on her first day.  Yes, I am going to be that mom.  As long as I don't start crying I should be fine.  School is about to start back up too.  Lot's of stuff coming up in the next few weeks.

We hope everyone is doing well.  Thanks again to all the family for helping to make Tim's 40 a memorable one.  Enjoy the rest of your summers.

Updates

To say it has been a rough 2012 so far would be an understatement.  I am already looking forward to 2013 and it is not even August yet.  Luckily all of our issues have been manageable, but it has just been one thing after another this year.

We took Casey in for her 6 month pulmonary check up last week, and he asked us how things have been since he saw her last in early January.  By the time I finished rattling off the different issues I could see his head actually spinning.  He didn't even know what to say. 

We started off the new year by trying a new medication for Casey's stiff legs.  That medicine caused all kinds of issues (GI bleeding, urinary retention, high heart rate, etc.).  We finally got her off of the medicine and most of the side effects went away.  Not all though, after that we spent some time in and out of appointments, tests, etc to try to find out why Casey wasn't having normal wet diapers.  The tests came back to say that she is okay, but that she is pretty much always walking a fine line between hydrated and dehydrated.  So we do everything we can to get her as much fluids as possible, but her GI issues only allow so much.  It's a tough balancing act. 

We went about a week then Casey got an eye infection, that led to an ear infection, that ended up being a double ear infection that came back as MRSA (staph).  NO FUN!!!  Casey had to take some pretty serious antibiotics to kill off the infection and this did a number on her tummy.  She was crying a lot as well.  We thought the crying was from the pain in the ear and tummy issues and that after the antibiotics that she would be fine.  The medication finished and she still kept crying.  The ENT checked her out and said the ear was better and that he wasn't sure why she was crying.  We went round and round and finally after a couple of weeks (very long weeks) we figured it out.  Casey's neuropathy pain had gotten out of control.  Her neuro increased her neuropathy medication and it did the trick.

We went a couple of days with a happy girl, and we had to start working on switching her formula.  The one she has been on for years changed from a can to a carton.  We were told it was the same formula, just new package.  Wrong!  They changed the way the calcium and vitamin D were being added (and it is more of both) and this led to constipation issues.  We already had Casey on medication for constipation and really didn't want to have to increase or add more medications if we could avoid it.  Instead we wanted to find a formula that she could switch to.  We compared labels and found an elemental formula that seemed like a close match.  Wrong again.  Elemental formulas are made with certain digestion enzymes that are supposed to be easier to digest for kids like Casey that have digestion issues.  Well, Casey is allergic to one of these enzymes.  Instead of helping to digest it shuts down Casey's digestive system completely for about 24 hours.  Anything we put in she throws back up.  After about 24 hours we had to slowly build her up from pedialite to a mix of pedialite and formula.  All the while she was still retching, crazy high heart rate, low oxygen (she had to be on oxygen for a day) and the retching caused her ulcer to bleed so we had GI bleeding on top of everything else.  Since she was not able to take anything in, she stopped having wet diapers again.  We had to go back to using a catheter to make her pee.  It took us a full week to get her to be able to handle formula again.  Luckily we had some of the cans left that we could use while we got her back on track.

Casey did good for about a day, then a miscommunication led to Casey getting the elemental formula again.  All of the same issues came back.  All Casey had the first time was about 100cc (just over 3 ounces- a can of soda is 8 ounces- it took us over a week to get her to cover from less than have a can of soda's worth of elemental formula).  The second time we caught it pretty quick.  She had been given about 45cc the second time - just over 1 ounce.  However, the second time was actually worse.  Since she had been so sick for the entire week before, she had not had time to fully recover.  She did not have any reserve of fluids to fall back on while her digestive system was shut down.  We spent a lot of time on the phone with her doctor, and were very close to heading to the hospital a few times in the first couple of days.  Luckily Casey was able to take some pedialite after about 12 hours and we were able to get her hydrated enough to bring the heart rate down to a safe level.  We still had to use the catheters for a few days, and her heart rate was safe, but still very high. 

Casey's doctor said she would call in an order for Casey to get some fluids via an IV at home.  This sounded perfect!  We could get Casey hydrated with out having to worry about her tummy issues.  We learned that if you are not an established infusion patient with an infusion company, this is not an option on a weekend.  Of course this would all happen first this Saturday morning. 

We had finished our surplus of the old cans and had no idea what to do for formula once we were able to get Casey back to that point.  As luck would have it, we had a secret weapon (we didn't even know it).  One of Casey's nurses had a baby in April.  She is still breast feeding and offered breast milk for Casey.  Breast milk is much easier to digest and Casey's weak little body could take advantage of the antibodies in the breast milk as well.  We talked with Casey's doctor about it before starting.  Everyone was on board and thought it sounded like the best approach.  For anyone freaking out reading this, milk banks are actually very common and very safe.  This was even better, we knew the source personally and trust her completely. Casey's nurses really do love her and will do anything for her.  I think this nurse went way above and beyond.  It's pretty amazing to see people care so much about our little princess.

Casey did great with the breast milk and bounced back pretty quick.  We worked up from pure breast milk to a combination of breast milk and formula.  Just this weekend Casey was finally able to go full formula.  We decided to go back to her original formula (in the new package that caused her to get constipated) and we doubled her constipation medicine.  We really wanted to avoid adding more medicine, but it wasn't worth putting Casey through weeks of trial and errors with formulas that were hurting her.  So far she is doing okay with the increased medicine. 

We have worked with Casey's doctor to get the infusion order filled.  Since Casey is always borderline dehydrated, having the infusion on hand when we just can't get enough fluids into her tummy will make a huge difference.  Sadly that will mean that to get the fluids we will have to have a nurse come out and start an IV, but it's better than letter her heart race for days on end while we try to get it down slowly through her stomach. 

So far this year we have had to add catheters to help Casey pee and now IV's to help hydrate her.  Both are ordered as needed, but neither are things we were planning to see anytime soon.  You do what you have to do though, and you just figure it out.  The good news is that Casey is doing better this week.  She has been watching movies and playing some.  All of the elemental formula has been removed - and banned- from the house.  Hopefully we can have some time to try to enjoy the rest of the summer.  We hope everyone is well.

The Good & The Bad

Let's start with the good news.  Casey has responded really well to the increase in her neuropathy medication.  We saw a difference immediately.  She has been sleeping better at night, and the nonstop, inconsolable crying has finally stopped.  She was breaking our hearts.

Casey's BFF Makayla moved away last weekend.  Her mom was also one of Casey's nurses.  We miss them already.  Luckily we were able to squeeze in one more play date at the accessible park before they had to leave.  Casey loves Makayla (and Maritza- her mom);  hopefully they will come to visit soon and often.

We are still having a really hard time getting Casey's formula issues resolved.  I won't go into a lot of detail.  We tried a new one last Thursday and with about 3 ounces we had to stop (a few hours).  Casey is still recovering from all the affects of that formula.  We added it to our 'Never Again' list. 

We have a few more things to try.  We are in the process of trying an alternative now.  We will see how it goes over the next day or so.  We are really hopeful that this works.  We are down to the last can of the old stuff.  When it's gone, that's it.  Hopefully we will post good news of a new formula for Casey in the very near future. 

We are kind of laying low over the past week or so.  Casey has been trying to recover from the formula that did not go so well, and Tim and I have been pretty busy with work and projects. 

Casey did get to go to one of her favorite places before she got sick (in addition to playing with Makayla).  Casey LOVES her dentist.  She has lost so many teeth.  She only has one left up front.  She looks so cute.  While at the dentist we found out on of her bottom front PERMANENT teeth is coming in.  She is growing up way too fast. 

That's about it for now.  We hope everyone had a fun and safe fourth, and that everyone is enjoying their summer so far. 

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.

Is it June yet?

May has been a rough month so far.  We had a night nurse that had been with Casey for about 2 years.  Up until early 2012 she was good.  She was late all the time, but she never called in and did a good job when she was here.  We could live with the lateness since she was good with Casey.  However this year we started having other issues with her (I won't go into details).  After a while it just got to be too much.  We let her go at the end of April.  She was doing 5 nights a week.  So here leaving means I have been the night nurse.  I seriously don't know how I did this for 4 years before we got night nurses.

Our weekend nurse that has been doing Saturday and Sunday nights offered to pick up 3 more and go full time with us.  However, she had other patients.  The agency had to find coverage for her other patients before she could switch over to working with us full time.  This week she was able to pick up 4 nights, and starting next week she will be covering 5.  We hired a new nurse to pick up the other 2.  I stayed up with her this week to train her on Casey's sounds, movements, schedule, etc.  She did pretty good.  It takes any nurse at least a few shifts to really pick up on Casey's needs.  I hope that this week I can do spot checks (every hour or so) and that by June she will be all set. 

Of course, while we are short handed Casey got sick.  She has tummy issues off and on all the time.  Usually we can give her something and get them under control pretty quick.  This last bout was not so easy.  In addition to the tummy issue she also seems to have an eye and possibly ear infection going on at the same time.  We were about to head to the ER last weekend when she finally started to show some improvement.  I think she heard me say we were going to the ER and she was not having it :)

She missed school this week and last, but the plan is for her to get back to class this week.  She has a field trip to a bookstore this week for story time (of course this means that I drive her and her nurse and we just meet the teacher at the store- but it still counts as a field trip).

There have been a few highlights since out last post- it hasn't all been bad.  The very last weekend in April we organized a special needs play group.  The organization I started last year CLU Campaign, hosted the playgroup at the new accessible playground in Round Rock.  It was a lot of fun.  Casey had a rough morning and Tim was busy, so the shower I had planned on getting did not happen (welcome to being a mom), but other than a really bad hair day, everything was great.  We are hoping to have special needs playgroups at least quarterly.  If I can make it happen monthly I will, but no promises.

Casey has started music therapy again.  Tim found a music therapist (at Coffee Bean of all places) that is great with Casey.  She started a couple weeks ago and is going to come to the house twice a month.  She has also agreed/volunteered to help with the next playgroup so we can make it a music playgroup.  I think it will be so much fun.  As soon as I find the place we will make that happen.

The nurse that has been on maternity leave is going to start doing a couple half days again in June.  Casey will be very excited to have her back.  She has gone to visit her nurse and the baby a couple of times.  She is always so excited to see her nurses.  We are very lucky to have such amazing nurses.  I really think we have the best ones. 

Between needing to sleep for doing the night shift and Casey being sick, we kind of skipped Mother's Day last weekend.  My family is coming over tomorrow for a delayed Mother's Day lunch.  It should be a nice day.  We hope that everyone is doing well.

Special Needs Party Planning

Planning a party for any kid is a lot of work.  Planning a party for a child with special needs can be extra tricky.  It can be done though.  Each year I work very hard to try to come up with a wonderful birthday party for my daughter.  Over the years I have come up with some great, very accessible, party ideas.  Hopefully these ideas, and some Special Needs Party Planning Rules I have come up with will help others planning a party for their child with special needs.  This is just a few ideas, there are tons more out there, but this list should get you started. 

Arts & Crafts Party-

Boys and girls can both have a lot of fun at an arts & crafts party.  You may have to recruit some help for kids with limited mobility.  Our daughter loves arts & crafts, a lot of the time she is just saying yes to the details and/or placement of things, but she loves to be part of creating something.  We did a princess craft party for her once.  Her and all of her friends made princess tiaras.  They had a great time.  We had lots of other things planned, but they all were having so much fun the entire party was spent at the craft table.   Boys could do something like pirate hats, or treasure chest or maps.  The list of arts & craft themes is limitless.  Just take what your child is into, and Google that topic with 'Arts and Crafts' you are sure to get a bunch of ideas returned.  An added bonus is that the crafts they make can be the party favors.  You don't have to waste time and money on goodie bags that just end up being tossed later anyway.

Movie Party-

Not all theaters are willing to do this, so you may have to do some homework on this one.  If your child is into movies, you can find a theater that will let you have the entire theater for a showing.  They will usually work with you to make it quieter, brighter, etc. as well.  The trick we have found when we did a movie party was that to get them to be flexible without having to spend a fortune, we had to be flexible on the day and time.  It was worth it though, everyone had a great time.  We have a luxury theater in town that only seats 40, but the seats are extra big.  We are able to put a tumble forms with wedge in the seat, or her bean bag chair.  The lobby is nice as well for doing pre-movie parties.  If you have an iPic or similar style theater near you, it worked great for accessibility.

Sing-A-Long

Many music therapy centers offer parties.  The fee is reasonable (in most cases) and if your child is into music, this can be a great party idea.  The therapist will get everyone involved, there is dancing (for those that can dance and move) and singing (or just making noises).  A great idea is to get the song list ahead of time.  For not much money you can get blank CD's and burn the song list for all the kids coming to the party.  You can make and print out CD jacket covers too.  Maybe something like 'Casey's Party Mix- 2012'.   If you don't have a music therapy center, you may be able to get a music therapists to come to your own as well.  You can tell the kids coming to bring their favorite noise makers with them. 

Story Time

Many book stores have story time.  Some have party rooms as well.  If your child loves stories, start calling your local book stores or libraries.  You can rent the party room and invite the kids in for story time.  We did this recently and the kids had a blast.  In addition to story time, they were also able to make bookmarks.  The store we used had party bags for the kids, but before I knew this I was working on writing up a little story just for my daughter about a birthday princess.  I was going to have it printed and give that as a favor to the kids.  You can do something like that pretty easily.  I found some calendars in the dollar bin that had wonderful pictures.  I then cut the pictures out and used them as a base for my story.  You can scan those into your computer, or use drawings from your child.  Then there are some sites that will do professional printing/binding.  Or you can use Walgreens for nice but not crazy expensive.  There are lots of ways to print it out yourself at home too.  At craft stores you can find lots of affordable ways to create your own book.

Parks & Playgrounds

Many cities/towns are building accessible playgrounds now.  Search for accessible playgrounds in your area.  These are great places to plan parties.  I would suggest going ahead though, and making sure there is a place out of the weather in case your child needs a break.  I would also suggest making arrangements with the city.  Some cities require this, but required or not, it is recommended.  They can reserve the area for you so you don't have to worry about kicking other people off the tables.  You can usually hire face painters, balloon animal clowns, jugglers, or whatever your child would like to see to meet you in the park.  Balloon animals make great party favors too. 

Home Party

There is never anything wrong with a traditional party at home.  Invite friends and/or family and just focus on doing the things that make your child happy.  Even if that means watching a movie on tv, or just relaxing and being around loved ones.  A party does not have to be action packed.  Some kids prefer and thrive on quiet, controlled environments.  If that is your child, do force them into a party because that's what you think you have to do.  Make sure their birthday is special, but don't make it torture. 

Virtual Party

Unfortunately, some of our kids spend birthdays sick and/or in the hospital.  That doesn't mean they shouldn't get a special day.  Hospitals are usually great about helping decorate the rooms (nurses are often very creative).  If your child is in the hospital, or too sick to be around others, have all of your family and friends take a picture.  Pick a theme (wearing silly hats, making funny faces, holding a stuffed animal, whatever).  Get them to send those pictures to you (email or printed).  Then on the special day show the pictures to your child and let them see how much everyone misses them and wishes him/her a special birthday.  If you have enough time you can even put them all together with the birthday song (or any song) and make a little slide show for your child to enjoy.  Or if your child is more responsive to sound, instead of pictures, have everyone send a voice message.  There are lots of ways you can safely celebrate your child's birthday and include loved ones, without ever leaving the house or hospital.  My daughter loves when her friends make her pictures to hang in the hospital room too.  Personal touches like this make any day brighter, especially birthdays.

Regardless of how you celebrate your child's special day, be sure to do something.  Just because our kids have special needs, does not mean they don't still need to be kids.  They deserve a day all about them, and what makes them happy.  In my opinion, they deserve a lot more than just a day.  Here are a few rules to follow when planning a party for your child with special needs.  Hopefully if you follow these rules, everyone will have a great time.  

Rules:

1. Don't worry about what all of the other kids are doing for their parties, focus on what your child likes. 
2. A party does not have to follow a preset agenda.  Have enough things planned to fill the time, but if an activity runs long and people are enjoying it, be flexible.  You can always save the items you don't get to for another day.
3. Don't focus on food.  Many special needs kids have special diets.  A lot of parties and holidays focus on food.  If you have a child that cannot eat cake, don't center the party around the cake.  You can still have one for everyone else, and sing happy birthday, but don't make it the focal point of the event.  Also, if other children with special needs will be attending, it is a great idea to let families know in advance what foods and drinks you will have.  This will give others warning in case they would prefer to bring their own snacks.
4. If your child is hard to buy for, be sure to either provide guest with some ideas, or request them not to bring gifts at all.  Many parties have started collecting and making a donation in the child's name instead of bringing gifts.  We don't do gifts because in addition to being hard to shop for, our daughter is not physically able to open the gifts and her and her special needs friends are not able to stay focused on watching me or her dad open her gifts.  We would much rather use the party time for things she and her friends enjoy.
5. Time!!!  If your child is not able to tolerate long periods of time, there is nothing wrong with having a party for only an hour (or whatever works for your child).  It's much more important that your child has a wonderful hour, than a good one followed by 2 painful hours trying to calm them down.

Library Day

Casey was finally able to go to the library with the kindergarten class today.  She had a great time.  She sat at the girl's table for story time and made a bunch of new friends. 

She really likes books about elephants.  We laughed when she went with just her teacher 2 weeks ago and picked out all elephant books.  She picked out more elephant books today too.  At least she's consistent. 

Party & Other Fun Stuff

It's official, as of Monday Casey is a 6 year old. Thank you to everyone who helped make this a special event for her.  She woke up excited about it being her birthday.  We got her dressed and ready for school in one her new outfits.  About an hour before school, our power went out.  We assumed it was just our area, so we went ahead and loaded her up and drove to school.  When we got there we were told the school's power was also out and that we should go home.  Just as we pulled into the driveway back home the power was back.  I called Casey's teacher who asked if we could bring her back.  It turns out that she had all kinds of birthday treats in store.  Casey loves her birthday, and I am so glad she went to school.  She had a great time.

Casey, Grandma Barnes & Uncle Larry @Chili's

We picked her up from school and went straight to Chili's (Casey's favorite restaurant).  There is a Chili's in town that is located between the school for the blind, school for the deaf, the state home, and Rosedale.  The staff is wonderful with special needs and Casey loves to go there.  She reads the menu and chats with us.  It's really cute.  She had a little bowl of ice cream for her birthday. 

Party group photo

On Sunday Casey had a great time at her party.  We had a private room at a local book store - Book People.  They had a craft area set up for Casey and her friends to make bookmarks and crowns.  Then they had a lady come in and read a few stories.  I went up a few weeks before to help pick some books that I thought Casey may enjoy.  Her and her friends loved it.  The reader did a great job really getting into the stories.  Casey kept saying no when I asked her about cake, and yes when we offered cookies.  It was a little different, but it was her party so if she wanted cookies instead of cake, then cookies it will be.  I was asked many times where the cake was, but people seemed to go with it when we offered cookies. 

Casey with her nurses & Mom

Casey was so excited about her party that she went into a little sensory overload for a while.  She was awake, but just sat back taking it all in.  Most of her friends were able to make it, as well as most of her nurses.  It was a great time, and I am so glad we decided to have it at the store.

On Friday we were supposed to take Casey to therapy, then on the way home go shopping for her party outfit.  Instead Friday came with seizures, a fever, and all kinds of worries.  We kept her home and had her rest as much as we could.  Luckily she had a good night and woke up feeling much better on Saturday.  We took her shopping and she knew exactly what she wanted.  As soon as she saw it she let us know that was it.  She picked a beautiful purple floral shirt, white leggings, and a purple flower for her hair.  She looked like a princess.  Then of course, we had to paint her toes purple that evening to match.

Casey checking out some library books

Last Tuesday Casey was finally able to go to the library.  She had been planning a trip to meet another kindergarten class there for story time for weeks.  Every time she was ready to go something seemed to come up.  The other class was not there with her, but Casey was able to go and check out a few books all by herself.  She picked some elephant books.  She does love her elephants.  We have read them all many times since.  She goes back this Tuesday (hopefully with the class) to get some new ones.  She got a lot of books for her birthday as well.  We have doing a lot of reading around here.

Each year Make-A-Wish has 'World Wish Day'.  There are events all over that each branch hosts.  We were not able to go last year.  Luckily this year Casey gets to join in the fun.  Sunday evening we will head to the party.  I can't wait.  Make-A-Wish always does such a great job.  I am sure Casey will have a lot of fun.  We will be sure to get and share pictures.

Between Casey's birthday, Tim's mom & brother visiting, and just lots of stuff going on (through the rest of April) it has been a busy month.  A good busy, but busy.  I am looking forward to next week getting back to our normal schedule.  As always, we hope all of you are doing well.

General Update

Casey had an appointment with her Ortho last week- just a standing 6 month check-up.  Overall it went well.  They wrote an order to get an evaluation for a new wheelchair.  Casey has gotten so long that she is hanging out of her current chair.  Currently she is in a wheelchair/stroller.  The next chair will still be customized to her needs, but will be more like a wheelchair. She is getting so big!!!  Depending on how the chair works, we may have to start looking into an adapted van too.  We knew eventually this was coming.  It will take a few weeks/months to pick the best chair for her, then it will take another 6+ months to actually get it built and ordered.  By her next birthday though, possibly even by the end of the year, she will be in a big girl chair.

We have been dealing with some issues with Casey not having much output (urine) over the past month especially (off and on for a while though).  We have taken her in for all kinds of tests and everything is coming back clean.  We ruled out infection, dehydration, kidney stones and blockages.  We went Tuesday to talk with Urology.  They have us keeping a journal of all of her fluids in and out.  We have to keep this for a few weeks, and help her if she goes more than 6 hours while awake with no output.  She has been going about 12-13 hours up until now.  Mid-May we take Casey and the journals back to see if we are leaning toward her just needing more volume in, or if we are dealing with something a little more complicated like Neurogenic Bladder.  We are hoping for volume.  Either way though, it is a long road ahead.  Casey's intake is such a fine science that even adding an ounce a day can be tough.  We will post more in May after we get some more answers.  The good news is that yesterday we did not have to help her at all, so far today is going pretty good too.

I am working on uploading some pictures from Casey's birthday and other things.  I will get another post with party details, pictures and more up later today or tomorrow.

Family Birthdays

Many of you may know this already, but for those that do not, most of my side of the family lives in Texas. We have some in Dallas and Houston and some here in Austin. Even though we live in the same state, between work and kids and life in general we don't get to see each other as often as we would like. We do try to get everyone together every few months. This weekend we all gathered and celebrated family birthdays from February, March and April. Casey was thrilled about the idea of getting some of her birthday presents early. What kid wouldn't like that idea?

My family came in for a late lunch on Saturday, followed by cake and presents. Casey was being good, but she wasn't really interested in much. On Sunday almost everyone came back before heading home. On Sunday, Casey was ready to play. She was wiggling all over the place trying to get to where the action was. Eventually she ended up in the playroom with her cousin (he's 1 year older). They were pretty cute. I sat with Casey on the floor and she was working really hard to keep her head up and pay attention. Riley is very into presidents and was teaching Casey all about them. He would tell her about one, then ask her if she wanted to know about another one. If she said yes he would go into detail, if not then he would go down the list until he found one she wanted to hear about. He would write it up on her chalk board and she was loving it. They were funny.

Casey was supposed to go with a class at her school to the library tomorrow. She has been looking forward to it for weeks. When we picked her up today though they told us they had to postpone a week for testing :(

Casey lost another tooth this weekend. That's 4 now. She has 3 others that are super loose. I expect she will loose more any day now. She LOVES to wake up and find treats from the tooth fairy. We have to read her tooth fairy book before she can go to sleep too.

That's about it for now. I will be sure to post after she goes to the library next week. I can't wait to hear all about it. I am sure she will have a great time. As always, we hope everyone is well.

Updates

Spring break is over tomorrow and we go back to Casey's usual schedule. I am so glad that she had the week off; she needed it. Last week was a bad one. Casey had some GI issues that had us about ready to pack up and head to the ER a week ago Wednesday. Right as we were about to load up, she started to perk up and seemed to be coming around. She had some GI bleeding, and fever and she would not tolerate her food at all for a few days. Over last weekend we were able to get her to tolerate her food (we had to dilute it with pedialite and work our way up to formula). We did finally get her back on track. Casey used this week off to rest and get back to normal.

She has been playing some and seems to be doing much better now. We have no idea if the issues were just Casey or if she had some sort of bug. We are very happy she is doing better and that we were able to avoid the hospital.

Casey has a full week with school, therapy and some doctor appointments (all routine- nothing major). Then next weekend some family will be in town for a couple of days. She will be a busy girl. I will try to get some new pics to post and share. As always, we hope everyone is well.

Play for All

The city of Round Rock had the official grand opening for the new accessible park today - Play for All. Casey was having a pretty good morning and told us yes when we asked if she wanted to go. They did a great job. There are all kinds of fun things at the park, and it's not too far from our house. It was a little windy, and after a little bit the wind was bothering Casey some. She was able to hang out long enough to check things out and of course, get her face painted. She loves face painting.

On the way home Casey was so worn out that we
had barely left the parking lot and she was already sound asleep.

I am sure we will be back to visit again soon, and often. I am so glad there are things like this for kids with special needs nearby.

Up to 32!!!

Casey has had a pretty good week. She LOVES Valentine's Day. She was so excited to make her Valentine at school on Monday. When I was getting her dressed Tuesday I asked her if she was going to bring it home that day and she was so excited. Her nurses that worked that day brought in Valentines for her too. She was loving it. An entire day devoted to pink, purple and hearts. It was a Casey kind of day for sure.

On Wednesday she had a GI appointment. Nothing major, just a follow-up. She is up to 32 pounds now. That is a pretty big deal. She just hung out while the doctor was checking her out. She did really well. After we got home the weather was a little cruddy and she started to have a hard time, but once she went to be she seemed okay.

Yesterday she got to go swimming and the weather was beautiful. We had a bit of a hard time with her bath, but other than that it was a great day. I won't go into a ton of detail, but her bath chair at home became unavailable about 10 minutes before we had to head to the pool. So, we packed the bath stuff and decided we would just give her a bath at the pool before heading home. Turns out the hand shower at the pool was also unavailable. Ugh!!!! I had to stand between her and the overhead shower while her nurse filled buckets to wash & rinse her off. The shower chair wasn't working right either there. She was not happy. Poor thing just yelled the entire time. She was very happy to be home when we finally got back. It made for a long afternoon.

The weather is nasty outside today. Casey's having a rough day with lots of drainage. Her nurse has been suctioning non-stop today. We took Casey to therapy this morning. She tried to work, but was having such a bad day. She is hanging out watching movies now (refusing to nap). I don't know if it is just a 5 year-old thing or what, but she fights naps with everything she has. She is miserable, grumpy, and in dire need of a nap - but she refuses to take one.

Next week is pretty busy. Lots of annual reviews all somehow landed on the calendar for next week. It will be a long week, but then we will be done for another year. We hope that everyone is doing well. Have a great weekend.

Long Overdue Post

Wow, it's been a while since my last post. The good news is that there is not much to report. It has been a rough winter for Casey. It seems like she gets sick with something, then as soon as we get her over it she gets sick with something else. Luckily none of these have been too serious. It just seems as though it really is always something. I have heard a lot of other parents say the same thing about their kids. I think it must be the weather. We have still not seen winter show up. We have a few days where it is cool enough to turn on the heater (or so Tim says), but then all of a sudden it gets hot again and we have the AC back on. I know this is hard on my respiratory system so I can only imagine what this is doing to Casey.

Casey has missed a lot of school and therapy so far. I think she was out of school most of the time between Halloween and the end of January. She may have gone 2-3 times total during that period. We have finally gotten her back to at least going one of her two days a week. She did not go today. She seems to have some sort of stomach bug that kicked in last week. Sunday was AWFUL!!! We suctioned non-stop and she was just miserable. I thought if she could get a good night's sleep she would be fine today. However, she was up all night. She was so tired this morning and tried to get some sleep. I decided to cancel school. Today wasn't quite as bad as yesterday, but not great either. She just now (11:PM) went to sleep for the night. We'll see how it goes. Hopefully she will be able to go to school in the morning.

It seems like all of my days are running together over the past few months, so I won't even try to catch everyone up on all of the little details since my last post. On Casey's good days she has been enjoying all of her arts and crafts that she got for Christmas, and watching lots of movies. We are trying to plan her birthday for April. It sounds far off, but it will be here before you know it. We can't decide if we are going to do a party, or just something special with family. We have barely started to work out the details.

Tim has been busy with work and his wood shop out in the garage. He is getting really good with the wood tools. I have been working with a couple of groups (local and online) that support the special needs community(s). One group I work with just launched a new website. It is pretty exciting. If you want to check it out (especially any other SN families reading this) it is called Mommies of Miracles (MOM). You may recognize Casey as the "Trivia Tuesday" image on the main page. It's an old picture, but very cute.

That's about it for now. Our night nurse called out tonight, so I am on the night shift and should get back to work. As always, we hope everyone is well.

Success

I am very happy to report that we are HOME! Casey did amazing. They were able to place the tube in the right ear. I was really worried it was going to become another cholesteotoma. The doctor cleaned out the left ear's cholesteotoma and said that in general it is doing pretty well. We still have to get it cleaned often, but we do not need to start looking into a major reconstruction surgery.

The dentist was going to get some images and do some cleaning. However, we found out that in order to do that Casey would have to be intubated. That was a deal breaker. We decided to cancel that part of the day. Her teeth are doing okay, and we can do with out the images for now. Intubation just adds so many extra risk.

Anesthesia did an amazing job. They were prepared, they listened, and they got us back to our princess as quick as possible. The entire experience today was positive.

When we got to Casey she was still asleep. We sat and waited and a few minutes later she was up and ready to go. After she woke up they gave her some tylenal and had us get her dressed.

Casey was excited to be home. As soon as we got her back to her favorite spot on the couch she started making her happy sounds. She has doctor's order to just rest today (I need those orders). I don't think any of us will have a problem with a nice quiet weekend.

Thank you all for your thoughts and prayers. We really appreciate all of you. Have a wonderful weekend, now that we are home I know that we will :)

Ready for Surgery

We spoke with the hospital today and we are all set for Casey's procedure tomorrow. Her dentist wants to get some images of her permanent teeth (just to have a better idea of what is going on) while Casey is under. The initial ear procedure was scheduled quickly to reduce the window for the ear to get worse. Then we called the dentist just yesterday (I kept meaning to and never got to it). They were able to work together and get it all scheduled. Thankfully we have wonderful doctors that really care about our little princess. We are so grateful that they understand her risks and are will do jump through hoops to get things done in the safest way for Casey. I am not sure what time we will be home tomorrow. As soon as we get back and settled one of us will be sure to post an update. Thanks again for all of the thoughts and prayers.

Those Darn Ears

Back in June 2009 Casey went in for routine ear tube surgery. When the ENT got in he found that her left ear had a Cholesteotoma. The doctor put the right tube in and from that point on we had been going in to see ENT every 3 months to have them clean out her left ear. The right tube fell out sometime in 2010 and the doctor has been checking the right ear while we are there to have the left ear cleaned. A few months after the right tube fell out the doctor noticed some negative pressure in the right drum. However, with the extra risk any procedure puts on Casey, he has just been watching it to make sure it does not progress.

Just before Christmas Casey went in to see the ENT. This winter she seems to be getting more ear infections that usual. Ear infections and drainage are pretty common with Cholesteotomas, so we have just been treating them with drops each time. A few weeks ago we noticed her right ear was draining some too and so he took a closer look. We had been able to maintain that right ear's pressure for quite a while. The pressure has increased this winter enough for him to suggest putting a tube back in the right ear. Here's where it gets a little tricky- this is what we did in 2009 and we didn't act quick enough. Between the time he suggested tubes and the time we got Casey in for the procedure, the left ear perforated and advanced to a Cholesteotoma.

We are moving quick this time. Casey is scheduled to get her right tube done on Friday. While she is there the doctor is also going to clean out the left ear really good. He should be able to give us a better idea of how the left ear is doing. We are very hopeful and optimistic that the doctor will be able to get the right tubes placed. There is a chance he will not be able to place it and we will have to start dealing with a Cholesteotoma on that side as well.

Any procedure is scary for any kid, and extra scary for kids with respiratory issues. We will spend lots of time with anesthesia making sure they know what to expect. Casey has had this procedure done at this hospital before and things went very well. Regardless of positive past experiences, we are always a mess until we have her back with us. The ENT knows Casey very well. He is planning to do this with just gas and to avoid an intubation. That is the current plan.

We will try to update late Friday or sometime over the weekend to let everyone know how it went. Please keep Casey in your thoughts and prayers this Friday.

Teeth

Last week was a busy week for Casey. We expected with it being the week before Christmas that it would be slow, but we were wrong. Casey had school Monday and Tuesday. A dentist appointment on Wednesday. Casey saw the ENT and had therapy on Thursday and therapy on Friday.

Casey loves going to the dentist. She always gets excited when we tell her we are going. She did great (as always). The dentist told us that her bottom 4 teeth were all loose and ready to come out. She said that she expected them to fall out by the new year. I thought she was crazy. Turns out she was right. Casey lost 2 today. The first fell out on it's own. Then the second was really loose. Casey kept sticking her tongue out playing with it. Each time she did it fell further and further forward. It was just dangling there and she was making such a drooly mess. I ended up reaching in and it came right out when I touched it. Both teeth are safely tucked under her pillow waiting for the Tooth Fairy now. She is not supposed to grow up this fast!

I'll post more on the ENT appointment later. I have to go make sure that we are on the list for the Tooth Fairy tonight :)

Merry Christmas

It's official, Casey LOVES Christmas. She was really into it this year. While we were in the kitchen getting dinner ready, she wanted to come in and be in the middle of the conversations. When we ate dinner, she wanted to sit at the table. When it was time for presents she was wide eyed and ready to go. Usually she is happy hanging back in the living room and away from everything. It was really cute to see her want to be involved this year. She was so excited with every present she opened too.

Most of my family was able to come in and enjoy the holidays with us. It would have been nice to have Tim's family around too, but they are pretty far away. It was nice that most of his family was able to be together. We hope that everyone had a wonderful Christmas. Here's to a happy, safe and healthy 2012.

We thought you all may enjoy some Christmas photos of our little princess.

Back to School

Casey is finally recovered enough to go back to school. I was hoping she would go yesterday, but we couldn't get her to stay awake. The antibiotic seems to have helped clear out her lungs some (we are still clearing out a little- but she is feeling much better). Now that she is finally able to get comfortable and sleep she had a lot of sleep to catch up on. Yesterday was a lazy lazy day. This morning she got dressed (against her wishes) and we took her to school. Once she was there she remembered that she likes school. Her teacher brought in a little tree for Casey to decorate for the classroom. Casey had a great time. When we got there to pick her up she was so proud to show it off.

I spent the weekend making fudge and getting little gift tins ready for all of her teachers. Most area schools are out on the 16th. I assumed Casey's school was out all next week as well. I was wrong- Casey has school next week. I had another week to get stuff ready. Oh well, at least I am done with teachers now. It leaves me some time to finish up everyone else.

Update

Last week I mentioned that Casey got sick Tuesday afternoon. Wednesday she seemed like things were going better. We did not have any fevers, and she was pretty alert. Wednesday night she refused to go to sleep. Her night nurse said she finally went to sleep around 12:30. The nurse also mentioned her lungs sounding a bit crackly. The morning nurse noticed the lung sounds as well Thursday morning and they seemed to be getting worse. We also started suctioning lots of nasty looking stuff out of Casey. Needless to say, we made a few calls to doctors.

Casey's pulmonary had us come in for chest xrays. Casey has pneumonia in her right lung. We are pretty sure she was so exhausted after the movie that she fell asleep instead of coughing up the food she had refluxed. When she woke up Tuesday with the spiked fever and I suctioned out a lot of food, I think she had already aspirated on some of it. Aspirations are no fun, but at least they are not contagious. Casey started on an antibiotic Thursday afternoon. The secretions are looking much better already. She is still having some breathing issues. We have added extra breathing treatments that seem to help.

On Saturday Casey was planning on going to her holiday party. She had been looking forward to it for weeks. This is a special party for kids in the Blind Services Program (many of the kids are a lot like Casey). They have Santa and all kinds of accessible fun for the kids. She was doing better, but still sick yesterday morning. She got very excited about going to the party when we talked about it. Since she isn't contagious, and had been looking forward to seeing Santa for so long, we decided to go to the last 30 minutes of the party- just enough time to see Santa. She did great. I was torn on taking her, but I am glad that we did. She LOVES Santa. She told him everything she wanted as soon as she saw him.

We are hoping she is up for going to school this week. She hasn't been since Thanksgiving. She had her ear infection and as soon as that cleared up this started. Ugh! It is the last week of school before Christmas break. We will just have to play it by ear.

We hope that everyone is doing well. Have a great week :)

Muppets

Today Casey had a special treat. The movie theater that did her Make-A-Wish a while back has been great about letting us know when they get kid movies. We were all very excited when they told us the Muppet Movie was coming. The theater told us that the best times to come are Monday or Tuesday morning at the first viewing. Tim took off work and we let Casey skip school so we could all go see the movie today. Emily, Casey's nurse, came with us. The movie was great. Casey is not a big fan of previews, but once the singing started with the Muppets she was one happy girl. She stayed awake and alert through the whole thing (all 2 hours). I have to say, I am a big Muppet fan and I think I liked the movie as much as she did.

This afternoon Casey is not feeling well. I hope that getting her out in the cold this morning did not get her sick. She is resting now, and I hope that with some rest this afternoon she will be fine in the morning. She always likes to keep us on our toes.

Getting Ready for Thanksgiving

This year has flown by. I know I say that every year, but they just keep going by faster and faster. I need to find a way to slow things down (good luck, right).

Overall things are going well. Casey seems to have fully recovered from the drug allergy we were dealing with for a while. She is back to causing trouble. School is out next week, and all of her therapist are off as well. It should be a nice quiet week. We have a few things to do Monday and Tuesday, but then we are just going to enjoy the down time.

Casey loves the holidays. She listens to Christmas music all year. I have to admin I love Christmas music too. We plan to put up all the decorations on Friday after Thanksgiving. The lights on the tree always seem to make Casey happy.

I think Casey is in the middle of another growth spurt. Her legs seem a bit more boney than usual and her clothes are all a little short. She is getting so big. It looks funny when I try to carry her around. Her long legs come down past my knees.

That's about it for now. We hope that everyone has a wonderful Thanksgiving.

World Prematurity Day

It's hard to believe that just a little over 5 years ago Casey came into our lives. I can't imagine life with out her. Today is World Prematurity Day and I just wanted to write a little something for all of the other families that have, are or will find themselves in the NICU (a very scary place for ANYONE).

Doctor's did not give us much (none at all really) hope. The time that we spent in the NICU with Casey was terrifying, felt like it lasted an eternity, and was the most isolating lonely time. We never gave up hope, and our little miracle proved all the doctors wrong. She still has a lot of medical issues and challenges in her life, but she is very much alive. Her personality, her spirit, and even her diva attitude grow bigger every day. Our Casey is an inspiration to everyone that has ever heard her story.

I don't want to tell everyone it gets easier (it really doesn't). But you do learn to adapt. You redefine 'normal' and you adjust goals (yours and your child's). You learn who you can count on, and who you can not. I have learned to treasure EVERY moment. We celebrate little milestones everyday. We may never get to walk or talk, but we focus on what we can do and celebrate the heck out of those events.

To all of the wonderful parents, grandparents, friends, family, etc. out there to preemies and special needs kids, thanks for all you do.

Halloween

Casey loves Halloween. She wore her Tinkerbell costume to school yesterday. Her teacher brought in 2 of her puppies and dressed them up as well. After school Casey went to trick-or-treat at all of her doctor's offices. They were all very excited to see her. She had a great time. On our way home from visiting all of her doctors we stopped by my grandparents (her great grandparents) for a short visit. Casey was about to crash by the time we got there so we could not stay long.

After taking a good nap Casey was ready for round 2. We got back into her costume and went trick-or-treating to a few houses in the neighborhood. I was happy to see that there were a few that registered with CLU as homes with non-food treats. Hopefully as this catches on even more homes will think about kids like Casey when getting ready for trick-or-treaters.

Casey was so proud of her Halloween treats. We got home and she snuggled with Daddy while I handed out stickers and toys. When she went to bed there was no fighting at all, she went straight to sleep and slept hard all night. Tinkerbell was exhausted :) It was pretty cute, the glitter on the wings kept shedding. It was like she was leaving a little pixie dust trail behind her.

Rather than just uploading a picture from yesterday, I thought I would show you all how much Casey has grown. Here are Halloween pictures for each year...

	2006- Casey was a little bunny. I think she wore this costume all of 20 minutes. We had just enough time to snap a few pictures then she as mad and wanted out :)
	2007 Casey had her foot surgery early October, so we had to work with 2 full leg casts. Tim found a glow in the dark skeleton shirt and it was perfect.
	2008 Casey was a blue flower fairy. She picked it out all by herself. We took Casey to a costume shop and she shocked us all. She was very into yellow at this time so the blue was a surprise. She was a beautiful blue fairy.
	2009 was a tough Halloween. Casey had been sick for about a week before. We ended up in the hospital the next day were we stayed until early December. She was not up for wearing the Minnie Mouse costume, but she tolerated the ears long enough for a picture.
	2010 Casey insisted on being a nurse. We had little scrubs made with her name on them and everything. She had a great time visiting her doctors and dressing up.
	2011 Casey chose Tinkerbell. She has been all about princesses and fairies this year. She picked Tinkerbell right away and I think she chose well. She helped me make little puff ball socks and everything.