Thursday, May 28, 2015

Casey's 9th Birthday Party

On Saturday, April 25th, Casey had a fun birthday party in the park.  A bunch of her friends came and we had a pavilion all to ourselves.  The kids played games, a clown came to paint faces & make balloon shapes, and we of course had cake.  It was really hot that day.  When we first got there and were setting up Casey got a bit overheated.  We had to take her back to the car and blast the AC for a little bit to cool her down.  When she was finally cool enough to try again we dipped her drool cloth into the melted ice in the cooler and kept that around her neck (re-dipping every few minutes).  The cool rag helped a lot.  Towards the end of the party she did get a bit overheated again.  We decided to wrap things up and get her into the AC to stay.  She loves to be around her friends, but the weather takes such a toll.  She has always been sensitive to heat and I think the older she gets the more sensitive.

Casey spent the rest of the afternoon/evening recovering from the party.  We had the house as cold as we could get it and she just rested.  She seemed to be much better by the next morning.

We had the cake done by Icing Smiles again this year.  It's a great program for kids like Casey.  I was a little worried.  The baker that signed up to do Casey's cake had to cancel last minute when her son got sick.  Luckily she has friends that are also bakers and was able to get someone to take over.  Everything worked out great and the cake and cupcakes were a huge hit.

The original clown that we hired had to cancel as well due to a schedule conflict.  Luckily she had a clown that could take over for her.  The kids loved Devo the Clown.  We even had a party crasher.  One little girl playing in the park decided that we were having way to much fun so she just wondered in and got in line to get her face painted with the rest of the party. 

We didn't take a lot of pictures at the party, but here are a few:

Casey with her baker and the cake in the background

A quick family pic

A very hot Casey

Kids in line for face painting

Casey with Devo




Saturday, April 18, 2015

Easter, Ponies and More...

Wednesday night after the nurse came in Tim and I both crashed into bed.  It felt like it had been such a long week, then we were reminded it was only Wednesday!!!  We have been going nonstop since our last post.  Some good, some not so good, some medical, really it has been some of everything over the past month.

The weekend before Easter the local accessible play ground, Play for All, had their annual special needs egg hunt.  We have been able to take Casey since the program started 3 years ago.  She really had a good time.  It is open to children with special needs and their siblings.  Casey takes her honorary little sister to help her collect her eggs.  I am not sure which one has more fun.  After the egg hunt we went for an early lunch and Casey had a great time.  She loves to go out to eat even though she doesn't eat.  I guess she just likes the feel of a restaurant.

A few days after the egg hunt we met with anesthesia up at the hospital.  Palliative joined us so that we could all talk about our concerns with any procedure, but specifically the CT scan that she needed for her cholesteotoma.  We had sent a letter before hand (a very long one) that laid out our concerns.  I never know what to expect when we do this.  I HOPE that the specialist reads what I write before hand and puts some thought into my concerns.  There have been so many times in the hospital over the years that doctors have come in and not bothered to read Casey's chart and notes at all.  Many times they come in and all they have read is her name so they refer to her as "him" or "our son".  While we hoped that the letter had been read, we were ready to have to explain everything in detail and put up a huge fight to get them to work with us on the scan.  To our surprise things went very different.  Not only had they read the letter, but they had studied it, talked to other members of Casey's medical team, and offered the ideal solution to us with out us having to fight for it at all.  They said they thought with Casey's issues that it would be best for us to position her, for us to manage her airway, and for us to stay by her side the entire time.  That is EVERYTHING we asked for.  When we got on the elevator to go home after this meeting we were kind of speechless.  Casey's nurse finally said "wow, that was almost too easy."  We felt so much better about the scan after the meeting and agreed to set it up.

The Saturday before Easter Tim had to head to India for his annual work trip.  It is always hard when he is gone.  He is stressed and worried about Casey getting sick while he is gone, a nurse calling out and me not getting a break or sleep, etc.  And I am exhausted, even with the nurses covering all of their shifts, just having to be the only parent for a week.  Luckily, Casey did pretty good MOST of the time while he was gone.  We set up a full week of fun stuff to try to keep her busy so she would not freak out when she realized Daddy had not been around in a few days.

Monday we took Casey to a miniature horse farm that one of her friends told her about, Northwind Farm.  They have a special adaption program for kids with special needs.  For a monthly fee Casey is able to adapt one of the ponies and then she can go visit as often as she likes (or in our case as often as she is up for it).  She met all 12 of the ponies and picked the last one she met, Lil Red.  We have not been back yet, but hopefully we will make it out there this week sometime.   Tuesday was not a good day, but on Wednesday she had music.  She made great choices, she sang, Wednesday was a good day. On Thursday she got to talk to Daddy when he called as she was waking up, so that set her up for a pretty good day.  She did school and then some of her little friends came by that evening with dinner.  She always loves to see her friends. On Friday we took her to see 'Home'.  She loved the movie.  She stayed awake the entire time, she was chatty at all the funny parts. She seemed to really enjoy the movie.  She was wiped out after and not able to make it to her Girl Scout meeting, but she recovered by early evening.

On Saturday she got to watch ponies on the big TV (the new season started Easter weekend).  Then my family came over for a visit.  She got to hang out with her Cappy, Grandpa John, Great Grandpa and aunts Megan & Molly.  She even got to have some chocolate cake (or at least the icing).  Cappy & Grandpa John stayed the night, but everyone else left that afternoon.  Casey's cousin was running the Cap10K on Sunday morning so everyone had to get home for some sleep before the race.  He finished 2nd in his age group and 80th overall.  I think there was over 25K runners, so that's kind of awesome.  Way to go, Riley.  After the race Cappy & Grandpa John came by to tell us about it, then the had to get back to Houston.  Casey and I just relaxed Sunday afternoon and then Daddy got home just before dinner. 

Tim was pretty tired after traveling so he spent a little time with Casey then went to bed early.  Monday was her CT scan, so Tim took the day off in order to go with us, and recover from traveling some.  The scan itself went really well.  They were ready for us, they let us get her positioned, then her nurse and I stayed with her.  She was so brave.  When the tube started spinning and they moved her into is, she did get scared.  She cried a little.  Her nurse was on one side and I was on the other and we talked to her the entire time.  She got through it and then Daddy came in and picked her up to snuggle.  She was not happy about it at all.  The rest of Monday we just let her rest and watch movies on her iPad.

Tuesday she finally made it back to dance.  She was so excited to see her friends.  She has not been back to dance since her recital in February.  They took a break, and she has not been up to going since they started back up.  I was really glad she finally made it this week.

On Wednesday after school we took her to the ENT to have her ears checked and to review the scan results.  The scan showed that the cholesteotoma is not is a critical state.  We can continue as we have been with regular cleaning and monitoring.  That is the best outcome and what we were hoping to hear.  We will have to do another scan 6-12 months from now, but her doctor is happy to keep going as we have been.

Yesterday and this morning Casey has been having a hard time breathing.  She is on bipap right now and it looks like it is already helping.  We are planning on laying low over the next few days so she has a great birthday and a great birthday party next weekend.  Hopefully the weather cooperates as well.  Here are a few pictures from the egg hunt and the pony farm.  We will post more after her party.  Until then, we hope everyone is doing well.















Wednesday, March 25, 2015

Spring Break

Last week was Spring Break.  Casey wasn't feeling well for most of the week.  We did a more accurate culture on her respiratory issues and started some new medications last week.  She is getting an antibiotic as well as an inhaled antibiotic to try to help get this crud out of her lungs and her lungs back open.  The good news is that the drugs do seem to be helping, the bad news is that in order for them to help she does have a few bad days as she starts to clear the stuff out.  By Friday though she was able to be off of the oxygen some during the day.

Casey's Girl Scout troop went to see the new Cinderella movie Friday morning.  Casey was so excited to go hang out with her friends.  She LOVED the Frozen short, then fell asleep for the first half of Cinderella.  She did wake up in time for the ball though (that is the only part she really cares about anyway since this version didn't have singing).  The battery on her suction machine was not cooperating though so we had to head out as soon as the movie ended.  She wasn't happy about not getting to hang out with her friends like she had planned, so we stopped for ice cream on the way home to make up for it.  Once we got to the car we could plug in for power.  We stopped at Sonic and she and I split a chocolate shake.  She is so much like her daddy- she LOVES ice cream.  In the picture, she is hanging out in the car enjoying her shake (it's hard to tell in the picture so I thought I would explain).

On Saturday she was in a pretty good mood.  One of her nurses was coming over so Tim and I could go out and Casey was very excited about having a fun night with her nurse.  They did some Easter crafts and watched some movies.

Sunday morning Casey was not great, she took a little step back and was needing more respiratory help that the few days before.  We were able to get her off of oxygen around lunch.  A little friend of hers that lives next door invited Casey to get a pedicure with her at a nearby salon.  When I asked Casey if she wanted to go, she gave me a very strong YES!  We met our neighbors at the salon and Casey had a great time.  She got the entire experience with the foot/calf message and all.  Her friend picked a hot pink polish that they both used.  Her friend had actually just gone to the movie that morning with her mom and came very well dressed in her Frozen dress.  She and Casey are both total divas and get along great.





We are starting to plan Casey's birthday.  I still can not believe she is almost 9!!!!  We decided to get another Icing Smiles cake this year.  She had her dream cake a few years ago (the amazing My Little Pony cake).  This year she will get a fun cake.  They just confirmed her baker yesterday.  It's kind of cool how it works.  You put in your child's information on an Icing Smiles form.  Then if you qualify they have regional people that start contacting bakers in your area.  Then a baker will volunteer to provide the cake.  Casey's cake will come from Not Your Ordinary Cakes this year.  I am really excited to see what she comes up with.  This year her theme is Spring.  Lots of flowers, pink, purple, butterflies, all the girly stuff Casey likes.

We are still working out a date to go meet with anesthesia about potentially getting Casey's CT done.  There is not much to update in that area right now though.  When we know more we will share.

Monday, March 02, 2015

Mommy's Day Off

I occasionally take a few hours here and there for myself.  I may grab a long lunch with some girlfriends, catch a movie, get my hair done, I have even been able to join friends for the rare evening out a couple of time.  Usually I am gone for a few hours at the most.  I typically have to get back to relieve the nurse if Tim is working, or relieve Tim if he is on Casey duty.  I decided that Sunday I was going to take more than a few hours and instead I took an entire day for myself.  Granted, it took a lot of planning, but it was a great day and just what I needed. 

Tim and I just have the one car- the wheelchair modified minivan.  Since I was going to be gone all day I didn't want to take our only car (especially if he needed it for Casey while I was gone).  We rented a little car for me to have so he could keep the van.  We scheduled a nurse to come in for most of the day so Tim would still be able to get his stuff done too.  Tim picked up the rental car Saturday (thanks to a friend that was nice enough to take him to the rental office). 

If anyone is looking to rent a car, do NOT use Hertz.  They made a mess of our reservation.  Tim ended up going down the street to Enterprise and we had MUCH better service there.  From now on Enterprise will be our first call when we need to rent a car. 

On Sunday I got up bright and early and hit the road for Dallas around 6:30.  The weather was awful, but luckily the roads were just wet, not frozen.  I went to visit my baby sister and her family first.  She is a surrogate for a family and VERY pregnant with twins right now.  She has been on bed rest for a few weeks now.  I am so proud of her for doing such a wonderful thing and was excited to finally get to see their "new" house.  I say new, but they have been there for over a year now.  Lucky for her, Casey saved a couple boxes of thin mints just to get her over the hump until these babies get here. 

After a short visit with my sister I drove into downtown Dallas to see my sister-in-law and my niece.  It had been around 5 years since I last saw them.  When I found out that Allie would be performing in Dallas for a dance competition I really wanted to find a way to get out there to see them. 

I spent the afternoon watches dance teams compete, and I got to see my niece, Allie, dance.  There was some really great performances.  I felt like I was watching a live taping of America's Got Talent.  Allie's team did great in both of their categories, but nailed their jazz dance.  I really thought they had won that one, but I was still pretty excited when they came in second (they won in my book). 
 Between performances I was able to catch up with Jen, my SIL.  Since the first time I met Jen she and I just clicked.  She's one of those people that I can always count on, and whether it's been 5 days or 5 years, we can just pick up right where we left off.  After all of the performances were completed I stuck around and joined the team for dinner.  I was able to spend a little more time with Allie too.

I considered staying over since I knew Casey was in good hands at home, but if I stayed I would have had to get up really early to get back to Austin in time to return the car.  I am used to staying up when night nurses call out and my wall is 4-4:30.  As long as I left early enough to be home before 4 I knew I would be fine.  Around 11-11:30 I took Jen and Allie back to their hotel and hit the road back to Austin.  I got home around 1:30 and had a really easy drive back. 

I know it will be a while before I take another day for myself, but I really had a great day visiting family yesterday.  The best part was that when I got home, Casey was sound asleep and looked great.  She had a good day.  She and Tim even got to play some guitar.  She loves to rock out with Daddy. 

This morning I took the car back (again, thanks to a wonderful friend that was nice enough to pick me up) and now it's back to my normal routine.  There was a nasty accident on the highway this morning that I totally would have gotten stuck in if I had driven back this morning too.  Casey has a few appointments this week.  I will try to do a medical update post sometime by the weekend.  Until then, we hope everyone has a great week and that the dance team has a safe trip back home to Indiana.

Thursday, February 26, 2015

Tiny Dancer

Casey had her 3rd dance recital on Sunday.  I can't believe she has been my little dancing princess for 3 years now.  I can't believe she is turning 9 this April either!  The time has gone way too fast.  Last year the dance recital was kind of a disaster.  Casey was not doing well and then when we put her in a loud crowded room she had a huge meltdown.  She had an audience full of people to cheer her on and she basically rolled across the stage then straight back to the car and home.  She missed trophies, she didn't see any of her guest, it was just a mess. 

This year we planned for the meltdown.  We set up a little spot in a quiet hallway just for her.  She was able to relax and have limited stimulus before getting in costume and going on stage.  We then slowly got her ready and loaded into her chair just in time to take the stage with her group.  She did great.  After her performance we kept her in her dress but went back to her quiet spot for a little break.  As the show was wrapping up (we could hear the music from our spot) we got her backstage so she could go back out with the group to get her trophy.  Everyone goes out at the end together.  It gets loud and a little hectic so she started to get worked up while on stage to get her trophy.  As soon as she came back off we did all we could, but the meltdown was underway.  She made it to the end though, so it was MUCH better than last year. 

A cold front came through while we were there so it was really cold when we left.  We changed Casey out of her dress and into comfortable clothes then ran to the car.  By the time we got her home she was in full meltdown mode.  Her heart rate was really high and she was not breathing well.  We got her some oxygen and medicine and tried to get her to calm down on the couch while we got her bed ready.

My mom, her husband, my grandpa, my sister and her friend had come back to the house with us to celebrate my mom's birthday while they were in town.  Casey wasn't feeling much like celebrating so we got her to bed as quick as we could.  Once she settled into bed she started to look a lot better.  The past few days she has been sleeping a lot and recovering from her big day.  It's a hard balance.  She loves dance and we want to find ways for her to do as many fun things as we can.  Each thing is always so hard on her though.  There is always a price to pay and finding the balance of when to do the extra stuff or when to skip it is really hard.  I talk to a lot of other moms with kids like Casey and they have the same balance issues.  Unfortunately there is not an easy/obvious answer.  We have to just trust our gut instincts and plan on recovery times after special events.  We try to plan ahead with quiet areas and things like this as much as we can too and that helps.  It's just so hard to know when to be the over protective mom and when to just go for it. 

Hopefully with a few more days recovering she will be feeling much better.  Each day she looks a little better than the day before, so we are going in the right direction.  Here are some pictures from the show.  I'll do another post in the next few days with medical updates and any other stuff I left out of this post.

Casey's Performance

Trophy Time

Casey's Group on Stage

Casey Before the Show

The Hair/Tiara

My 2 Favorite People

Wednesday, February 11, 2015

So Many Things...

The Fun Stuff:

Casey is wrapping up her Cookie Sales.  She is the top seller in her troop.  She kind of has an unfair advantage though- there are a lot of people in her care circle that were all more than happy to buy cookies from Casey.  We are down to our last 5 boxes!  When she is all done she will have sold 230.  That's pretty impressive.  There are some kids that have goals of 1000+.  That is way more than I think we could handle.  Casey had fun selling, but I am pretty glad we are wrapping things up.

Casey has been practicing for her upcoming recital.  She got her recital dress yesterday.  It looks like a Cinderella gown.  She is going to be so beautiful- as always.

Casey has been working hard getting ready for Valentine's Day.  She made a fancy box with her teacher and has been making crafts for Daddy and me as well as little Valentines for her friends in dance & Girl Scouts.  She loves any excuse to do arts and crafts.

It has been pretty warm over the past few weeks.  She has been in the pool twice and out on her swing every chance she gets.

Since Casey is in 3rd grade now- WOW!  She has to take the state test this year.  It is of course modified for her, and instead of a timed test one afternoon she will work with her teacher to take it over the next few weeks.  It's not really pass/fail but more of a complete that she has to do.  Her teacher assures me that Casey knows the content, it is all about finding days when Casey will respond to let her know she knows the content.  I have to be nearby to come in and suction Casey as needed (or a nurse does), but there are some funny rules about us not knowing what is on the test.  So don't ask, I won't know and even if I did I could not tell you :)

The Medical Updates: 

It feels like the last 6 months are so are just a blur.  Casey has been growing so much and everything keeps changing.  As soon as I think I have one thing figured out she throws something else my way.  I am never bored though, I can say that without a shadow of doubt.  I can say for certain that I learn something new everyday too.

I mentioned in the last post that Casey's ENT was a little concerned with her cholesteotoma being more active than it has been in years past.  He wanted us to bring her in if we saw any drainage or signs of infection at all.  Of course, he takes the following week off and Casey gets a nasty infection.  We saw one of his partners and got Casey all cleaned out and back on her medicated ear drops.  The doctor that we saw suggested/ordered a CT scan of Casey's head.  A CT scan generally is not a huge deal.  However, for Casey it is.  She can not be positioned in a way that radiologist need her for this type of imaging.  Trying to move her around getting her as close to this position as possible gets her really upset.  The more upset, the more secretions, the more suction, and the higher risk for aspiration (that often leads to additional respiratory issues).  We have to stay with her at all times to manage her airway as it is very complex and not something that radiologists are generally prepared for.  The next option they offer is to bring in anesthesia and sedate Casey for these types of treatments.  That usually goes even worse- the details on all the ways that goes bad are way too much to type up for this post.  So even though in theory a CT scan is minor- for Casey it is still a huge deal.

We had to get labs drawn for her GI bleed recently.  We had to go the 3 labs on 2 different days.  8 needle sticks total- 5 on the final day.  There were 4 different techs that attempted to draw blood.  Due to Casey's physical changes the more she grows the harder and harder getting access to her veins has become.  We lost the ability to get peripheral IVs placed over a year ago.  Now any IV needs to be placed using an ultra sound (by the PICC team in the hospital).  It is looking like her blood draws are going in that direction now too.

We are still dealing with lots of respiratory issues over the past few months as well.  She's good one day then awful the next.  We are needing a lot more oxygen and respiratory aids than before.  Her left lung had a partial collapse around the new year.  We saw pulmonary yesterday and the collapse is either still there or back.

It's really hard to know with Casey what issues can be addressed, treated and/or fixed and what issues are part of our new normal.  We saw her palliative doctor last week and brought all of this (and more) to his attention.  We don't have a date yet, but sometime in the near future we will get palliative, pulmonary, ENT, GI, neuro and Casey's pediatrician together for what is called a care conference.  Tim and/or I will also be there and we will take a team approach on "what's next?".  I wish it were easier.  When we try to work on one thing something else usually gets worse.  No matter what she has going on, each little thing triggers break through seizures (heck- even bad weather can trigger seizures).  She is showing more signs of puberty now too- which is just one more complication to factor.  

We have known since very early on with Casey that some areas will improve.  She will have more and more personality, her cognition and social interactions all improve every day.  However, the big system issues (lungs, digestive, neuro, muscle/skeleton, etc) will continue to get worse.  Some years they only degrade a little, but some years she takes bigger hits and the changes are hard on everyone- especially her.  I hope that we can come up with some non-invasive ways to help her at the care conference.  I worry though that there are not a lot of options and that some of these "issues" are not actually issues, but just more Caseyisms.

We hope everyone is doing well.  Thanks for everyone's continued well wishes, prayers and support.  We can't say thanks enough for the amazing support system we have.  We are very fortunate.   Since we do not have a date for the care conference, I am not sure when/if we will have a lot to update on her medical issues in the near future.  We will have pictures and updates for the upcoming recital, Valentine's GS meeting, and more fun stuff to post soon.

Tuesday, January 27, 2015

Caseyisms, Cookies and More...

Casey's lung seems to have opened back up after a round of antibiotics and some time on bipap.  She is still doing some crazy stuff and needing oxygen more than before, but we are not sure if it is really a sick thing or just her getting bigger and her body needing time to catch up. 

We deal with the GI blood every few days, and it has oddly become a new normal routine for us.  Last week she had a little more and fresher than usual so we are going to get some labs and make sure that while her body was fighting the lung issues it did not fall behind in replenishing her blood cells.  We see her pulmonary doctor this week as well to talk about her lungs and breathing overall.  I'm not expecting many changes, but I will feel better if I can confirm we are doing all we can.  Casey has some ear issues that we are watching closely right now as well.  She has had a cholesteatoma for years now and it has been pretty stable.  Her most recent ENT appointment was the first time the doctor seemed a little concerned with the activity he saw.  We go back in a few weeks to get it checked again.  Hopefully it was just a fluke, but as she is growing so much things just keep changing.  Her head shape has changed some too.  One of our friends was over and we had her feel it since she is a doctor.  She said she sees it a lot in the older patients she treats that have brain injuries.  We will keep an eye on it for a while too.  It doesn't seem to be causing any issues, it's just a weird change in her head shape.  We refer to odd things like that as Caseyisms.  I told her doctors we need to find a way to get that added to the medical books as an official diagnosis. 

Casey's girl scout troop (or Daisy troop to be exact) started selling cookies on 1/21.  Casey sold some to her family, nurses, therapists, etc and she is going to try to get up to her doctors offices this week to sell to all of them.  Her doctors and their staff are all pretty excited that Casey is a girl scout.  I'm sure she will be able to sell quite a few boxes.

I am the cookie mom for our troop so that has been keeping me extra busy.  It's not bad though, and it's totally worth it since this is something that makes Casey happy.

At dance last week it was a beautiful day and the girls were all being so silly.  Casey and Jenny were chatty as ever, and I think the warm weather just made everyone in a great mood.  Casey got some wild unicorn pants for Christmas that she wore that day.  We are calling them her fancy pants.  We are not sure if it was the fancy pants or the weather, but she had a blast at dance last week.

One of Casey's friends from dance had a birthday a couple of weeks ago.  Casey went with the birthday girl and her sister to see Annie.  I have to admit, it was pretty cute.  The original is much better, but the new one wasn't bad.  I had not planned on seeing it at all, but the birthday girl picked the movie.  Casey started out great, but had a little melt down in the middle.  We had to take her out to the lobby to calm her down, then instead of staying in her wheelchair she finished the movie on my lap.  She loves hanging out with her friends, and once she calmed back down it was a nice afternoon out of the house.

We hosted our monthly game night on Friday.  Casey slept all day then around 4 she woke up and was ready to play.  She yelled at us for a little bit because she thought she would wake up to a house full of her friends.  When she realized she still had to wait an hour she wasn't happy.  All of her friends finally came over and she played so hard that she wore herself out before 8pm.  She doesn't have a lot of energy lately, but she tries so hard. 

Casey had a play-date on Sunday with a little girl that lives next door.  Her friend painted Casey's fingernails and they made bracelets and had a tea party.  It was great fun. 

Casey is getting ready for her dance recital and selling as many cookies as she can.  She has a birthday party this weekend that should be lots of fun too.  It's about as girly as they come- right up Casey's alley.  They are all going to a kids salon to get hair and nails done.  I am sure we will get some good pictures to post soon.  Until then, we hope everyone is doing well.  If you need to order cookies, let us know :)