2013 So Far

I have been really bad about posting lately.  It seems like every time I start to get to the computer something else comes up.  I have not posted at all in 2013 yet!  So much to update, now where shall I begin....

GI Update-
We are still fighting with gtube, but it is doing much better than it was before Christmas.  As long as we can keep Casey from laying on it, we are able to maintain it as is.  Hopefully we will be able to make it work long enough for some better veins to open up so the PICC will be an option when we need it.  Only time will tell.

Ortho Update-
We ordered a new wheelchair for Casey a LONG time ago.  We expected it around Thanksgiving, but the company was bought out, then there we other issues, long story short we have it scheduled for delivery Monday- YAY!!!!  They came out to do a final fitting/measurements a couple weeks ago.  We are very hopeful that she will fit much better and be more comfortable.  It is of course all Casey, pink and girly as it can be.

Not Casey's foot, just a Google Image- 4th Metatarsal

We recently changed to a different company for her orthotics as well.  We really like the new company.  We picked up her new AFO's just over a week ago.  They seem to be doing much better than her previous pair.

Our poor Nissan van was about ready to die so we got a new van.  We decided to go ahead and get one that can be modified with a rear entry ramp.  It makes life much easier loading and unloading Casey.  We are still getting used to it.  We drove Nissans for so long, switching to a Chrysler is a big change.  Without the new wheel chair yet, we are still adjusting where everything fits in the back.  The new chair will make a big difference.

Casey had PT this morning up at the outpatient side of the hospital.  We loaded up the van and Casey started screaming as I got her positioned.  I managed to get her foot caught on the seat belt (the hard plastic part that you plugin to).  I don't know exactly what happened since I did not see her foot, but when she started screaming we saw that her big toe had a hot red mark on the top and side.  Since we were heading to the hospital anyway we gave her some pain medicine and then I called PT on our way.  Her PT called the ortho to let them know what had happened and that we were on our way.  Everyone was so nice to get us taken care of and avoid the ER.  The ortho's nurse got us in for xray and while we waited PT was able to work on the rest of Casey.  Sure enough, however her foot bent when it got caught caused a fracture.  I broke the baby.  There is a fracture on her 4th metatarsal on her left foot (her good foot).  I feel horrible about it.  The staff pointed out on the xray that Casey has very brittle bones, but I still feel horrible.  I am usually so careful.  We'll go back in 3 weeks to have it re imaged and go from there.   Since Tim was at home working I did at least call him ahead of time to warn him before I brought her home in a cast. 

Nursing Update-
We are not back to having all of our shifts covered just yet.  We have found a new nurse that wants to pick up our open shifts, but has other patients right now that conflict with our schedule.  It looks like in about 3 weeks she will be able to pick up a few more.  Then we should have at least 4 if not all 5 of our day shifts covered again.  Right now we only have 3 days and I am not getting much done during the week.  The extra 1-2 shifts will make a huge difference.  Who knows, maybe I will be able to find time to post updates here more often.

Fun Stuff-
Casey had a date with her little boyfriend a few weeks ago (a pre-Valentine date).  He came to the date dressed up as her prince.  It was one of the cutest, sweetest things I have ever seen.  He brought her a princess dress.  He told me that it was long, just like a real princess.  Casey loved it and wore it to dance the next week.  She is doing great in her dance class.  She loves it.  Her recital will be this summer and I can not wait.  She is such a little diva. 

We have decided that school is not working out for Casey.  She had moved from the classroom to home-bound this year.  Even being at home though just is not working.  We had to cancel all the time for appointments, seizures, gi issues, etc.  We decided that rather than pushing her to do school when she is not up for it that we would just pull her out.  Now on her good days we can try to go to the library for story time, or do things that she really enjoys.  It will be when she is up for it instead of on a set schedule that may or may not coincide with her good days.  She loves to do arts and crafts, read stories, etc.  I think doing it this way is going to be a lot more enjoyable.  Tim said we need to find a "My Kids a 1st Grade Drop-Out" bumper sticker.  I am pretty sure they don't make those.

That's about it for now.  Hopefully we will have picture of a new wheelchair to post next week.  Until then, we hope everyone is doing well.

Holidays & Updates

A lot has happened since our last post.  So much so that I have tried to write this many times and have simply not had a minute to sit down and get it done.  We have pretty much been going non-stop for a few months now.

I won't go into a lot of detail, but last time I posted we were planning on doing a picc line for Casey to give her gtube a break.  Before we had a chance to line all of that up, Casey's gtube got much worse very quickly.  She ended up in the hospital the first week of December.  We decided while we were there we may as well go ahead and do the picc.  However, it did not go as planned.  The picc team was not able to find a large enough vein to place the line.  No one saw that coming.  We were very defeated, and really didn't have any other options.  We left Casey's tube out and had just a standard IV running some nutrition and her medications.  We were able to use the standard IV for about 3 days.  It was a longer break than we have ever given the gtube before, but it was not even close to the break we had planned/hoped for with the picc line.  We left the hospital at the end of the week with a better looking gtube than a month ago, but still a problem gtube.  We were able to get the hole down 2 sizes, so that was a plus.  We are still dealing with leaking and bleeding though.  The new plan is to keep this as long as we can, then go in to reevaluate for a picc at a later time.  Veins grow and shrink and turn and all that good stuff all the time.  Hopefully our next attempt (when ever it happens) will be successful.

One of our primary day nurses left as of December as well.  The first week of December was rough.  We have a new nurse that seems to be working out pretty good.  She has only done a couple of shifts so far (the holidays really confused everyone's schedules).  Casey seems to like her and she is doing pretty good with the suctioning and positioning.  We have a good feeling so far.

This week Casey was discharged from the occupational and speech therapy that she has been doing at the hospital.  She will still be going up there for PT.  OT and ST created a home program for her.  The plan is to have her work on the home program with us, teachers, nurses, etc for the next 4-6 months.  Then we will go back into the hospital program again to redesign an updated home program.  Casey's school therapists and teachers are excited to get the home program and see what we can do with it.

Casey has discovered 'My Little Ponies'.  She is so funny.  We have the Netflix app so she can stream them on her iPad.  She watches them all the time.  She can't help herself when they start up; she loudly sings along with the theme song.  It's really cute.  She has had lots of things she likes, Princesses, Tinkerbell, Fish, Elephants, etc, but she LOVES ponies.  Needless to say, it was a pony filled Christmas.  She now has DVDs as well so she can watch on the TV, iPad and in the car.  We are never without ponies now.

Most of my family came in for the holiday.  It was nice to have family around.  We took Casey to Round Rock on Christmas Eve to drive through the trail of lights they set up.  I think she liked it.  On Christmas she was pretty tired.  The family went out to take flowers to my grandma's grave, but I stayed home to let Casey get some rest.  My sister had surgery on Friday so she stayed home to rest with us too.  The day after Christmas we did the big dinner and gifts.  Casey did really good.  She sat up with me and was very excited about all of her presents.  She went back to watching ponies afterward of course.

We took Casey to a new orthotic place today.  She has been wearing AFO's to help with her ankles since her foot surgery back in LA.  The last couple pairs we have had for her have just been one problem after another.  We talked with a few other parents and found another place to try.  We were pretty impressed with Round Rock Orthotics.  They came in and really took their time to get to know Casey and her history.  They have a plan that sounds pretty good to us.  We will go back in a few weeks to get her fitted and go from there.  I hope that these will finally work for her.

I will try to get back on in the next couple of days to upload some recent pictures.  We have a friend that started a photographer company that specializes in special needs.  She came out and did a family photo shoot for us.  I will have to upload some of those and some Christmas pictures in the next few days.  As always, we hope everyone is doing well.  Have a fun, safe New Year's Eve.

Halloween 2012

Casey LOVES Halloween.  Each year we get Casey dressed up and deliver goodies to all of her doctors.  She has so much fun.  It's nice to see the doctors for fun reasons as opposed to a patient.  The staff loves getting to see Casey all dressed up.  We have done it enough years now that some of them expect us and look forward to the visit. 

Casey has a lot of doctors to visit.  Each year it seems like the list gets longer.  The deliveries take most of the day.  This year she was wiped out when we got back home.  We planned on taking her to a few houses nearby, but she just wanted to cuddle up with Daddy on the couch instead.  I don't think he minded.

On the Saturday before Halloween Casey got to go to CLU's Day to Play.  This one was at Lakeshore Learning and the kids got to make spooky spider crafts.  She had a lot of fun with her friends. 

Recently Casey got a new medical device.  The is called The Vest.  It's a machine that pumps air into a vest, or wrap in Casey's case) that surrounds the chest.  The air is pumped in in spurts to give the effect of CPT (Chest Precessions).  Previously we would always just tap on Casey's chest, back and sides to try to help break up fluid and crud in her lungs.  The wrap does a much better job than we can, and it covers the entire area.  We were not real sure how she would handle it, but she seems to like it.  Since it makes her chest vibrate she likes to hear her voice while it goes.  It's actually kind of funny. 

Here are some fun photos of Casey from Halloween:

Where to Begin?

I guess I will begin with an apology.  I realize it has been well over a month since our last post.  We try very hard to do at least weekly updates, but sometimes life just gets in the way. 

I think I have already said many times recently that 2012 has been a rough year.  Casey has been having gtube issues (really for the past 3 years) but they have gotten much worse over the past 6-9 months.  In mid-late September her ulcer was bleeding more than usual.  During this time she refluxed some and we are pretty sure she aspirated on it.  With in a couple of days after that episode she started to show signs of pneumonia.  I guess the good thing about her getting pneumonia from time to time is that we can easily identify it now.  We called her doctors and started the treatments and medications right away.

Usually a pneumonia will respond withing 24-48 hours of the antibiotic and Casey will start to look better.  We could not seem to get her over this one no matter what we tried.  We finally got to a point that Casey was sounding worse every day, with no improvements at all.  We took her into the ER on October 2nd.  We knew we were going to be admitted.  We have a machine called a bipap that we can use to help get more air into Casey's lungs when she is sick.  We wanted to use this, but the masks that we have for her was not working and the ones we had available through our providers would not work either.  We even used one from a friend hoping it would help (sadly it did not).  Our hope for being admitted was some stronger antibiotics and a new mask. 

They ran some labs right after we got there and found that in addition to the pneumonia Casey also had RSV.  This is usually associated with preemies and is very scary stuff.  When they said RSV and Casey is 6 I was very confused.  I guess anyone can get it, but it is very serious for preemies because their airways are so tiny.  RSV caused a lot of mucus and you have to clear it out.  Casey was having a really hard time breathing because she was not strong enough to clear out the mucus.  This was making the pneumonia treatments have no effect at all. 

The RT (respiratory therapist) came in pretty quick to get Casey fitted for a new bipap mask.  It took a few tries, and some creative modifications to get one to work.  With Casey's chin being recessed it's hard to keep a seal.  She likes to drop her jaw down and in and this pops that seal every time.  Since she can not close her eyes or blink it make the top of the mask tricky too.  A lot of them have bars that go up the nose and then lay on the forehead.  Casey can't use these.  We also have to have a quick release to get the mask off to suction as needed.  After many tries, Casey did have a mask that worked.

New, stronger antibiotics were started and Casey stayed on bipap for a most of the night.  Once she starts feeling better she starts to fight it.  When Casey fights the bipap you have to open it up and suction a lot.  When you are taking the mask off every few minutes it really is not very effective anymore.  Once she gets to that point we usually end up removing the mask and just putting her on oxygen.

We spent 2 nights in the hospital then came home to finish her recovery.  She was able to get off bipap, but after being home for a few days she had another episode where she could not breath through the mucus.  We had to put her on bipap at home that day for a few hours until she could clear it out.  She ended up staying on oxygen for a few weeks as well.  RSV is some pretty nasty stuff.  I really hope we don't see it again.

During all of this (and before) we have been having a horrible time with Casey's gtube.  It is just getting leakier and leakier every day.  The bleeding went from occasional to frequent to almost daily.  Now that we are finally getting past all of the respiratory issues we are working on trying to get something done about the gtube.

The leaking has made it so that not only is she not getting much of her food, but she is missing a lot of medications as well.  We have seen a lot more seizures over the past year and we are certain it is due to her seizure medications leaking out.  Since you can not be sure how much leaked out, we can't just give her another dose.  She has gotten so thin.  Her weight has only gone down slightly, but she is much longer than she was so she just looks like she is all bones.  The bleeding in her tummy makes her very sick and uncomfortable.  We have a lot more bad days than we used to.  It was time for us to sit down and talk with all of Casey's doctors about the big picture.  How can we make her more comfortable, stronger, and with the least amount of risks?

After talking with surgery many of the options that we would have liked to consider (redoing the gtube, placing a jtube, placing a port) are off the table.  Casey's pigeon chest and complex anatomy make things very complicated.  We have to make the gtube work.  Our only other option is to use a picc line. 

The only way that the ulcer in Casey's stomach is going to recover is to remove the pressure.  We will need to remove the gtube and just cover the site to keep the stomach acids from draining all over the place.  While the gtube is out (weeks or months) we can place a picc line to feed Casey.  Placing the picc will require that we put Casey on a certain type of nutrition called TPN.  TPN has to be adjusted for people to make sure that it is getting them all of the nutrients that their body needs.  When we place the picc line we will have to be in the hospital for 3-5 days while they get everything adjusted.  Casey can then go home with the picc line.  It will require that all of her medications be given through IV.  There will be new equipment that we will need as well.  Some of these things would can get pretty easily, but some of the medications and TPN are a little harder to get at home.  Most likely we will add hospice to our care team to help us access these items.  Used to people only used hospice at the end of life.  For many people this is still the case.  However for complex medical issues (like Casey's) it is not uncommon to move in and out of hospice care. 

Once the ulcer has had time to heal, and Casey has gotten some good nutrition through the picc line the hope is that the gtube will shrink some as well.  We will put a smaller (hopefully, it may not shrink as much as we hope) gtube back in place after weeks or months on the picc.  We will then remove the picc and go back to gtube feeding.  The gtube is still going to be at an angle, and it is reasonable to expect that over time (maybe a long time period, maybe not) the ulcer will likely return and we will have to repeat this process.  Over the coming years we will likely have to be in and out of hospice and off and on TPN.  As long as these help Casey to be more comfortable they are all worth it. 

We have a few more things we are doing with her current gtube site.  Depending on how these last things go will determine if she gets the picc line in the next few weeks, or if it will be sometime in 2013.  There are risks associated with any procedure, but the risks of placing a picc and going TPN is much smaller for Casey than the risks of major surgery. 

On a positive note, Casey had a good Halloween.  I will try to get another post done this weekend with details and pictures of all of her Halloween fun.  We will also post more in the near future when we have a better idea of the time table for placing a picc line.  Until then we hope everyone is doing well.

My Little Diva

Casey has not been feeling well, so she has not been back to school since her first day.  She was finally up for going today.  I helped her pick out her pink polka dot tutu and then I left her with the her nurse to finish up while I got the car ready.  When I came back in Casey had added quite a bit of personality to the ensemble.   She added a pink Cinderella ring, her fuzzy pink purse with a unicorn inside, fuzzy pink boots, pig tails (with pink bows) and all the diva attitude she can fit into her little body.  She makes me laugh sometimes.  I wish I could pull off one tenth of her style :)

She got to go to the library today.  She LOVES the library.  They got there a few minutes before the 1st grade class and the librarian was showing her some stuff.  After the rest of the class joined her the librarian showed the rest of the class what she had shown Casey and asked them some questions.  Casey's nurse told us that she would ask the question and Casey would answer loud and proud.  I'm sure she had the answer, if only she could make the words.  Of course when it came time to get her books she found her way to the elephant section.  I thought for sure last year that she read all the elephant books they had.  She found a couple more today.  

This evening Casey started having a hard time again.  Hopefully she is not getting sick so she can do the rest of her week's activities.  I guess we will have to just keep an eye on her and see how it goes.  I don't have much more to post today, just had to share the picture of the little diva. 

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.