Thursday, October 30, 2014

Born to be a Star

We have always joked that Casey has been a diva since she arrived.  She has a way of getting everyone's attention and making everyone fall in love with her.  She has even upstaged some big celebs.

The hospital where Casey was born was known through out the Los Angeles area as one of the celebrity birthing hospitals.  The Labor & Delivery unit was top notch and many of the pictures you see in the tabloids of celebs taking home their babies are taken in front of this hospital.  Casey was born on a Sunday and the previous Tuesday the hospital was crawling with paparazzi.  This was the hospital that delivered Suri Cruise and Brooke Shield's daughter, Grier.  All of the hospital staff was a buzz.  Did you get to see Suri Cruise?  Where you on the floor when Katie and Brooke delivered?  When you would get on the elevators all conversations were about the recent celeb babies.  That was until Sunday night.

Casey's birth was unlike any that most people have or ever will witness.  The fact that she and I both survived was nothing short of amazing.  The hospital was no longer talking about baby Suri, but now all of the chatter was about "that scary birth", and can you believe they are still alive.  I still remember the first time I got on an elevator to go visit Casey in the NICU after I had been discharged.  I was wearing normal clothes so no one knew I was "that mom".  Tim and I boarded the elevator and listened to nurses talk about us!  It was kind of surreal.  No one said our names, and no one broke any privacy laws, but we knew exactly who they were talking about.  The entire hospital was talking about Casey.  She upstaged Suri and her role as the diva was only beginning.

At 6 months old Casey went in to get Botox injections.  This is common treatment for kids with Cerebral Palsy that have stiff muscles.  But, Casey took it up a notch.  Casey received her Botox injections in Beverly Hills- of course.

Since Casey can not close her eyes and she doesn't blink, we are always trying to protect her eyes.  Usually we do this with sunglasses.  They serve a real health purpose, but they add to her diva status.

Now Casey has added her own paparazzi.  For the next 6-8 months a photojournalist, Ilana Panich-Linsman, will be following Casey around.  She is doing a project to show how much Palliative Care has changed over the years.  She will be following 3 local families around.  She will get some pictures of Casey doing all kinds of things (good and bad).  Hopefully with a long range of time like this she will be able to show an accurate illustration of Casey's life.  We think this is a great story that needs to be told and we are pretty excited to be part of this project.  We are also pretty excited to have some great pictures of Casey when it is all done.  She even offered to do some family pics.  We are excited to see how this story comes out.  A lot of Ilana's stories (you can see in the "In Print" section on her link) are seen in some big publications like New York Times, Wall Street Journal, etc.  Maybe Casey can finally get her record deal out of her new found fame :) 

Wednesday, October 29, 2014

Halloween Party

We LOVE Halloween and decided that this year we wanted to throw a little party.  The party was so much fun.  Casey had a blast.  Everyone wore costumes, and I have to say I was really impressed with how great all of our friends costumes were.  We had trophies for the best group, kid and adult costumes and everyone voted.  It was close since there were so many good ones.  Our winners were Princess Zelda for the kid category, Morticia Addams for the adult category, and the group went to a family that all dressed as characters from Alice in Wonderland.  We had pirates, vampires, pigs, mermaids and all kinds of great costumes at the party. 

We hired a babysitter to help keep the kids safe and entertained (and to keep the house safe too).  That was a FANTASTIC idea!  The kids had so much fun playing with her and the adults were able to enjoy themselves as well.  We will definitely have another party next year, and we are already looking forward to it.

Casey had a great weekend.  She was able to tolerate being in her costume and in her chair for most of the party.  She was so happy sitting on the patio and hanging out with her friends.  When we took her to bed I pulled her out of her chair and laid her down.  I noticed that at some point someone put a fake eyeball in her hand.  She was so proud and held on to it until she was all tucked in.  She now has a fake eyeball next to her bed :)  It doesn't match the fairy decor, but it makes her happy so it can stay.

She is looking forward to visiting all of her doctors on Friday to pass out treats and tell them thank you for another year of all of their hard work.  Last year after making the rounds she was wiped out.  If she is up for it this year there is a block party in our neighborhood and some of our neighbors invited her to trick-or-treat with them.  Hopefully she is up for some stuff, but we just never know until the moment comes. 

Here are some party pictures, and we will post more after Friday's activities.




Sunday, October 19, 2014

Quick Health Update and Some Fun Stuff...

Casey has been to a handful of doctor appointments since our last post.  Infectious disease has her on a 6 week course of antibiotics to hopefully finally clear out the cdiff.  Casey's neuro changed her medications a little to hopefully get her seizures more controlled.  Casey's GI is helping to keep Casey comfortable with tummy aches while we get her over cdiff.  We took Casey to get fitted for a new orthotic.  This one will be designed to hold her arms in a position that will open her chest up a little.  It won't correct her barrel chest, but the hope is that it will keep it from getting worse and help keep her lungs from being impacted.  They are having to do the entire thing custom (as is everything for Casey) so it will take a little while to get it done.  It may take a few tries to get it right, but hopefully once we do it will help her a lot.

Now to the fun stuff....

Casey did not make it to her first Girl Scout meeting, but she did make it to this weeks meeting.  She was so excited to wear her uniform and go play with her friends.  Her troop has 7 girls, including her.  She knew 4 of them and she was happy to make 2 new friends.  They did crafts, read a story, worked on a group/teamwork project and had lots of fun.  She is looking forward to going back very soon.






She made it back to her dance class too.  She loves to dance and was very chatty telling her friends how much she missed them while she was out sick. 

We have tried out the heater on the pool.  It works pretty well.  Hopefully she can get in some more pool time before it gets too cold.  She has been getting some swing time too.  She loves when Daddy grills- while he is on the patio cooking dinner she gets to hang out on the swing :)  I love when Daddy grills too!

This weekend we had my sisters, Cappy & Grandpa John, and GP over to celebrate October birthdays.  Casey had a good time visiting with family.  She told them all about her Halloween plans and showed them the ghost she made in Girl Scouts. 

After the birthday celebration Casey went to a Trunk or Treat.  A local hospital hosts one each year for kids with special needs.  We missed it last year, but Casey had fun this year.  About half of the trunks (sponsors) had non-food treats as well as candy.  Hopefully each year more and more people add non-food treats to their goodies.  One booth had the Mommies of Miracles decal up spreading the word about our Trick-or-Treat Program.  That was pretty great to see.  Casey has 2 costumes this year.  She wore her Boo costume to the trunk-or-treat.  She was pretty cute Boo.





If you have not already, be sure to pick up some non-food treats and print out your decal and/or register your address to let kids know you are participating in this year's Trick-or-Treat Program.  As extra incentive this year, every registered address is entered for a chance to win one of three $50 Walmart Gift Card.  Anyone that shares pictures of the decal on their home and/or pictures of their kid wearing the badge will be entered for a chance as well.  Full details on how to enter- click here.  Casey (and Tim & I) had our picture in the paper yesterday with a story about the Trick-or-Treat Program. 



Casey has a few routine appointments coming up and lots of fun stuff planned for Halloween.  We'll post again soon with more updates.  Until then, we hope everyone is doing well.

Monday, September 29, 2014

Swinging Girl Scout

After our last post Casey was starting to get a little better, but then seemed to take a few steps back.  It took us a long time to get her off of oxygen and to a point where her lungs started to sound better.  Sadly she had to miss a lot of school, dance, and pretty much everything over the past 3 weeks.  As of last week the pneumonia seems to be much better.  We are still dealing with cdiff and some terribly tummy stuff, but her lungs do sound much better (FINALLY).

The cdiff has been on and off since late June.  We have heard stories of people going years to get rid of it.  We can't really sit and wait on this.  With Casey always just barely hydrated, each recurrence of cdiff takes more and more fluids that she just can't spare.  This last run of cdiff caused her a lot of pain as well.  After talking with Casey's pediatrician and palliative doctor we are going to take Casey to see Infectious Disease this week.  Hopefully they can help us come up with a way to be rid of cdiff for good this time.

We are going to try to get back onto a normal schedule this week.  Casey has school, and dance.  She has barley done any school so far this year (I think only 2 days).  I guess this is just one of the many reasons we opted for homebound school for her.

Casey loves to swing.  When we go to the park that is always what she wants to do, she loves to swing at the PT gym at the hospital, really an chance she gets she loves to swing.  We have been wanting to get her her very own swing for some time now.  Our old house didn't have a place where we could hang one, but one of the things we looked for in our current house was a place for a swing.  She uses what is called a platform swing.  It basically lets her lay down while swinging.  There are a lot of therapeutic benefits to swinging as well enjoyment.  Casey's Ortho, his nurse and Casey's PT have been trying to help us get a swing for Casey all year.  It finally came in and Tim was able to get it installed.  I think it's safe to say she likes it.  Between the swing and the pool Casey is becoming quite the outdoorsy kid :)

Some friends of ours have done something really special for Casey.  Their little girls are some of Casey's friends and are all doing girl scouts this year.  They knew that I was not interested in signing Casey up if she was going to get stuck in a group of girls she may/may not know.  Instead our friends decided to go through all of the training, background checks, etc in order to start their own group.  This way Casey will be with girls that she already knows.  This is HUGE!!!!  Knowing that the girls are all good around Casey, knowing the environment is one Casey does well in, and it only being a few times a month makes Girl Scouts something Casey CAN do.  Our friends doing this so that Casey can participate means so much to us.  Casey is very excited!  This week will be their first troop meeting.  I am not sure if her troop will be selling cookies or not, but if so, she will be hitting you all up soon :)  

I will post soon with more details on the ID appointment, how Casey likes Girl Scouts, and more.  Until then we hope everyone is doing well.

Sunday, September 14, 2014

Can't Catch a Break

This poor kid has had one thing after another for what feels like all of 2014!  As soon as we get her over one thing something else comes along.  She is overdue for some time off and fun stuff.

She had a good week recently and was able to start back up with dance, met and liked her new teacher, and played some with friends and her nurses.  We thought things were looking up.  Out of no where this week things took a turn.

On Monday Casey had a lot more secretions than normal.  Some days are really bad, and there is not much we can do about that.  In 4 hours she had more than a typical 24 hour period.  When we took her to bed that night her heart rate was up pretty high.  When she gets dehydrated (which happens easily) her heart rate going up is one of the first signs.  We figured with as much as she had out, dehydration made sense.  We had her nurse giver her extra fluids that night and did not worry to much about it.

Over night Monday Casey's heart rate came down some, but not as much as we expected.  When she woke up Tuesday it started going back up pretty quick.  She also started running a fever.  After Tylenol Casey was still running a fever and her heart rate was still on the rise.  Something was up.  When we talked to her pediatrician they ordered blood work, x-rays, urine, all that fun stuff.  We got Casey dressed and headed to the lab.  Before we could even get out of the garage Casey started getting MUCH worse- and fast!  Her fever was climbing, along with her heart rate and now she was shaking and not breathing well either.  We decided instead of doing out patient labs that we needed to head to the hospital.

Luckily Casey has VIP status and we were able to call on the way to have them ready for us.  They quickly got blood work and x-rays going as well as an IV placed to start pushing some fluids.  It took a little while, but Casey did finally start to settle down some.  Her breathing was better, but her heart rate and temp were still up.  A normal heart rate for her when she is awake is in the 130's.  Her usual temp is 98.5.  When we got to the hospital she was in the 220's heart rate with a 102.9 fever (which explained the shaking and breathing trouble).  After a few hours and some fluids she was back in the 160's heart rate and 99 temp.  The blood work showed infection and the x-rays showed a pneumonia in her upper left lung.

Casey has chronic aspirations, and we deal with an aspiration pneumonia at least once every 12-18 months.  We have gotten really good at catching them early, treating at home, and minimal impact to Casey's routines.  All of the normal signs that we see did not show up with this one.  This one caught us off guard and hit Casey hard.

We got admitted and they started some IV antibiotics right away.  Shortly after getting to the room Casey had a HUGE BM.  Maybe 10 minutes after getting her cleaned up and changing all the bedding she had another.  On the 3rd one in an hour she started getting back into the higher temp, shaking, high heart rate, and now she also looked puffy and modeled.  All of the doctors and nurses came in to try and help us calm her back down.  It took a little while, but she did eventually start to settle again.  We were not sure if the fluids, antibiotics, or BM triggered the freak out, but it was kind of scary.  When some people have a hard time with a BM it can trigger the vagal nerve.  Being that this ties directly back to the brain it makes the body do all kinds of crazy stuff.  It's possible that is what we saw.

Around 11 that night Casey had another freak out, without the BM, and luckily she recovered from that one a little quicker.  Around 2AM Wednesday morning things started looking better.  Casey's heart rate came down into the 140's, her breathing was MUCH better, the temp was final back to 98.  By 6AM her heart rate was in the 120's (her sleeping heart rate is usually 80-100).  She still needed oxygen to help her breath, but her breathing was not as labored, much slower, and she could breath without the oxygen- just not as well as she usually could.

When the doctors came in to round they were very pleased with how much Casey had improved.  They let us go home later that day.  We ended up there about 24 hours.  By the time we figured out what was going on we were pretty much on our way home (that is why no one got a phone call- it wasn't personal).

Our main day nurse in on vacation this week.  We got home later on Wednesday so we did not have a day nurse that day (luckily we did have the night covered).  The nurse that was going to pick up Thursday got sick so we did not have that day covered either.  And we don't usually have a nurse on Fridays at all.  We did have Thursday and Friday night, so that does help.  I am up with Casey tonight though.  Hopefully it will just be a couple more Saturday nights for me and then we will have our nights covered again.  After being up with Casey in the hospital Tuesday night, then not having much help during the days this week, and now being up again tonight, I AM WIPED OUT!

Casey had a rough morning Thursday, but since then she has been slowly improving some each day.  She is still on oxygen and needed her bipap on Thursday.  She spent some time off of oxygen yesterday and we will see if she can go a little more today.  We want to be sure she recovers so we are not rushing her.  After we got home from the hospital they called to tell us that Cdiff is back again :(  This round is not as bad as previous rounds.  My mom restocked my candle supply too, so we are all set.  We have Casey on an antibiotic for the pneumonia, but we are holding off starting a second one for Cdiff.  Hopefully she can get by without needing it this time around.

Some of our friends came by to bring us lunch on Thursday.  That was a nice treat.  One sent us yummy Tiff's Treats Friday too.  Tim and I do love cookies :)

Casey had so many fun things planned this weekend.  I always hate when she is sick, but it breaks my heart when she has stuff she is looking forward to that I have to cancel.  One of her friends had a birthday party Saturday that she had to miss.  Sunday (today) there is an organization here in town (UR Our Hope) that does an annual fundraiser.  This organization does a lot for families like ours, and they always have the fundraiser at Casey's favorite Chili's.  We still have a Chili's menu around here that we will let her look at later, but it's not the same as going out to eat.  Hopefully with lots of work and rest we can get her feeling better this week and do something fun next weekend to make up for missing so much.

I will try to post more later this week on how she is doing.  Compared to Tuesday morning, she is already doing MUCH MUCH MUCH better.  Each day is better than the one before so I think we are on the right track.  And again, we are sorry no one was called.  We have not had a chance to do much of anything this week short of cancel appointments and any plans that we had.  

Saturday, September 06, 2014

School, Dance, Nurses and More....

We knew change was coming, but boy did it come.  It feels like we have been running in circles these past few weeks trying to get back on a routine.  Hopefully in another week or two we will have things running a lot smoother.

We have a new night nurse that recently started.  This post is being written at 3AM as I am training her this week.  It usually takes us a good week before we feel like we can go to bed, and a good month (or 3) before we feel like we can leave the house with a new nurse.  I am exhausted from being up all night and then sleeping 3-4 hours to get up and still try to help with Casey's day stuff.  I am hopeful that this nurse will stick around a while and maybe I can back to regular sleep soon. 

Casey started school.  She missed her first few week.  One day the teacher came out and she and I talked some about schedules, goals, etc. but Casey was not up for even meeting her that day.  The second attempt that week went even worse so we told her not to even come.  This week went a lot better.  Casey did 2 out of 3 of her days.  She seems to like her new teacher.  The teacher is soft spoken, which is a good thing with Casey.  She told us she loves arts & crafts and anything involving glitter.  I think she and Casey will get along just fine.  We had to cancel today because Casey was having seizures and the medicine we give her to stop the seizures pretty much wipes her out for the day.  Hopefully next week will go well.

We are still transitioning from doing out-patient physical therapy at the hospital to doing physical, occupational and speech therapy at home.  The PT was supposed to come out today, but we had to cancel her just like school.  She will be here Monday instead.  The ST came out to meet Casey and seemed really good.  The OT called, and I called her back, but I never heard back from her again.  I will try to find out what is going on with OT next week.  I know it's hard to start a new schedule when school is starting.  Everyone is shuffling things around.  Hopefully next week we can get things moving with therapies so we can start working on a good schedule for Casey.  We are going to work on self soothing goals, and calming techniques.  I really hope that with help from therapy we can get more stretching and relaxation tools to help when Casey is having a rough day.

Casey is getting a therapy swing.  We are VERY excited about this.  We should get it this week, and as long as Tim can find time to install it, she should be swinging in no time.  She loves to swing.  Between the swing (that will be going on the patio) and the pool, she is never going to want to come back inside.

Dance started back up this week.  Casey was thrilled to see her friends.  About half of the class is back, but not everyone.  There were some new kids in class and I am sure Casey will become great friends with them in no time.  When we were getting her dressed I asked if she wanted to wear pants and she ignored me (her way of saying no).  I offer shorts, again to be ignored.  I told her she had to wear something or we could not leave.  I offered both again and still got no response.  I then offered a tutu and got a very big response.  She knew she was going to dance and was just waiting for me to offer the proper attire.  She of course looked beautiful



We had a few routing doctor appointments this week.  Casey saw her Ortho on Wednesday.  She has been seeing him every six months for years.  In addition to all of her dislocations and contractures they like to keep an eye on her spine.  Casey does technically have scoliosis, but it is pretty stable so they just watch it at this point.  The doctor was pretty happy with how Casey is doing- so happy in fact that we do not have to go back for a full year this time.  Of course, we can call if we need to go in sooner.  I was worried about her elbows looking worse.  He said they are worse, but that they are not causing her pain and there is nothing that can really be done about it.  He referred to her elbows (as well as all of her other dislocations) as the Casey conundrum.  We corrected him and told him we call them Caseyisms.  He liked out term better.  Since she is so stiff, she is going to continue to cause dislocations and contractures.  Even if he did surgery to fix them, they would likely still go back in time.  We have ZERO interest in putting her through any surgery that is not necessary and he agrees that surgery is not a good choice for Casey.  He also warned us that as she gets bigger, breaks are going to likely be something we will see more and more.  He told us to just call when we suspect a break to avoid the ER.  If we can prevent breaks, and all other ortho related issues, we will just follow up again next year.

Casey had her GI appointment this week as well.  She sees GI every 3 months.  She still has stomach bleeding issues, so they want to keep an eye on her, run labs, and make sure that it does not become something worse.  Kind of like ortho, GI is another area that there is not much we can do.  They could do exploratory surgery to "try" and figure out what is going on.  They may be able to find something, and that something may be able to be repaired, but the surgery would take a huge toll on Casey and they don't think that anything they would find and possibly repair would be worth the risk of surgery.  We agree completely.  We don't like the GI bleeding, but we have learned to manage it.  The doctor added Iron back into Casey's daily routine.  She doesn't need it now, but he wants to be sure that she doesn't get to a point like we saw last November where she dropped quickly and needed to check in to the hospital and get a unit of blood.  We hope to avoid doing that this year- especially during cold and flu season.

Speaking of cold and flu, I should have taken a picture earlier today.  Casey is still a big cuddle bug and loves to snuggle with mom and dad.  Tim started feeling bad yesterday so I would not let him anywhere near Casey.  He was missing his snuggle time (we like our snuggles just as much as Casey) but still feels bad.  In order to get some snuggles he had on a face mask and had to scrub in before taking Casey.  It was a Kodak moment and I missed it.

Casey is still having a fair number of bad days.  We are doing our best to try and get her seizures back under control and more good days for the princess.  I really hope that the new therapies will help.  We have changed/increased some of her seizure medications this week too.  Time will tell if the change is helping. 

I'll try to get some pictures of Casey in school and on her new swing in the next week or 2.  Until then, we hope everyone is doing well- and for all the kids going back to school- we hope you all have a fantastic year!

Friday, August 15, 2014

We Need More Candles

Things were going pretty good for a few weeks.  Casey seemed to be over all the crud and back to her sassy self.  It was really nice.  I was stressing about all of the changes coming our way, but I was loving having my spunky girl back to causing trouble.  That was until Monday afternoon.

Out of nowhere Casey started having all kinds of issues again this week.  She wasn't having BMs, then she was having too many, and bad ones.  She wasn't having any wet diapers.  Her heart rate was through the roof.  She had run a low grade fever off and on.  Something was going on.  We talked with her pediatrician (who is amazing for the record- we love her).  She had us take in a stool sample and started some antibiotics again.  All signs seemed to point back to cdiff- AGAIN!  All of the runny, smelly stools led to Casey being very dehydrated as well (the high heart rate).  She wasn't having any wet diapers, and when we would cath to empty anything in her bladder we would get very little and very dark urine out.

Casey has a hard time taking in a lot of fluids.  Since her feeding tube is into her jejunum instead of her stomach it can not go at a fast rate.  We were giving her as much as she could tolerate, but we could not seem to catch up.  On Wednesday she had been on the antibiotics for 24 hours and she was still not having wet diapers and her heart rate was still up.  Her pediatrician ordered some IV fluids to run to help get Casey rehydrated.  It took all afternoon and into the evening for the company to get the supplies delivered to our house.  Once the supplies were delivered we had to call our nursing company to send out a nurse to place the IV.  It was around 9PM when the nurse arrived.  She looked around and tried once with no luck.  Another nurse came out to see if she could find a good vein.  She never found one worth trying.  As much as I really wanted Casey to have the fluids, I was glad that they did not treat her like a pin cushion.  Since they could not find anything they said they were going to send out another nurse in the morning to try again.  If Casey got worse we would take her to the ER.  Luckily the antibiotics had started to slow down the stools, so that helped give Casey a chance to start building her fluids back up.

Thursday morning the other nurse came out and gave it her best.  She tried 3 different times.  She used to be a NICU nurse and was telling us that the veins on Casey are smaller and harder to thread than the NICU babies she used to work on.  We have heard that a few times.  Since Casey is so stiff and has so many contractures and dislocations her veins don't run where or how they should.  It seems like every time she needs to get blood drawn or an IV placed it gets harder and harder.  In the hospital they usually will call in the PICC team to place the IV using an ultrasound.  If I knew how to read an ultrasound, and could get one for the house for a decent price I would totally invest in one.  I sadly can not read them.  They just look like bad reception on a TV to me.  Maybe I should look at taking a class in this or something. 

Since we were not able to get an IV at home, it was very likely that we would have to take Casey in to the hospital for at least 24 hours.  The good news was that Wednesday night Casey did have some wet diapers.  On Thursday morning she wasn't having any, but her heart rate was a little better than it had been.  We called Casey's pediatrician with an update on everything.  She agreed to give Casey until lunch.  She wanted Casey to get her heart rate down and to have a wet diaper and then she would be okay with her staying home.  Casey slept all morning and did get her heart rate down even more.  She still want not having wet diapers though.  When her doctor called at lunch she said she would give Casey until 4PM to have a wet diaper, or we would probably need to take her in.  We all did the peepee dance and did everything we could to get her to pee.  Nothing helped.  We cathed her and got a tiny bit out.  Other than not peeing though, Casey was starting to look a lot better.  Somehow I was able to convince her doctor to let us keep pushing fluids overnight and see how she does.  Luckily, Casey had a really good night.  She had 2 good wet diapers, her heart rate was back to its normal range, and she slept great.  This was fantastic news to be able to deliver to her doctor this morning.  We have avoided the hospital.  We have gone through a lot of candles this week though.  I think we may have to go restock our candle supply soon.  We are getting down to just the holiday candles.  That's okay with Tim though, he loves the cinnamon Christmas candles. 

You may be asking the same thing we did- how on earth did she get cdiff again, we just got her over it?  Well, I guess she was not fully over it.  She did have a negative result on the last test, and they think it was laying dormant for a few weeks.  The previous round of antibiotics were on a very low dose for her size.  This time the have quadrupled the dose to hopefully knock it out this time. We are not sure what triggered it to come out of the dormant phase.  We will probably never know since it really seemed to be out of nowhere.  At least we have a handle on things.  She is responding to the antibiotics, and her fluids are getting back in sync.  Of course this would all happen the week we finally decided to make plans again.  The people we made plans with totally understand though, so that helps.  As long as you don't get near the diapers she won't get you sick.  And, she seems to be perking up some as of today so I think she will be up for a little fun this weekend.  I really hope this round of antibiotics really knocks out the cdiff, and that I find a good sale on candles :)