Updates

March flew by, I am not sure how that happened so fast.  Casey is doing okay.  She had a rough time in the middle of March with some respiratory stuff that led to having her on and off oxygen for a couple of weeks.  Nothing serious though, so we were able to avoid the hospital.  We thought for a little while that we were going to have to put her on bipap for a few nights, but as soon as she heard us talking about she helped us clear out her little lungs.  She really HATES bipap.  We are waiting until we make it 1 month without a GI bleed before starting up the shaky vest again.  It may have helped or even prevented the crud in March, but it seems to make the bleeding worse so we are still holding off.  Hopefully we will be able to get there soon.  We have not made it a week yet, so the month goal may still take a few months.

Casey saw a few doctors in March.  Her Cappy (my mom) came and hung out over spring break to help get her to and from appointments while her nurse was on vacation.  Casey is officially 40+ pounds now- WOW!  You can tell too, she looks much fuller and more healthy.  Lifting and moving her are getting harder by the day.  It's good though.  She worked for years to finally get some weight, so I will just figure out how to lift and move the extra pounds.  She saw a new Physical Rehab doctor as well.  We liked the one she was seeing, but they had us move to a new guy that specializes in botox for the salivary glands.  We tried them before (years ago) with no improvement.  This guy uses ultrasound to make sure that the salivary glad is injected and that the botox is not ended up in another area.  We will give it a shot and see how it goes.  I think it's scheduled for June sometime.  He also suggested that we get Casey on with an endocrinologists.  We had been thinking about calling one for a while with her showing some signs of precocious puberty.  Since she turns 8 next month and it's not full puberty yet I am not sure if this is the proper diagnosis or not.  It's pretty common in kids with brain injuries, and doesn't change her care plan much (other than extra baths and potentially hormone injections in the near future).  The doctor that suggested endo wants us to see them for Casey's bone health.  When he did his exam and started moving her arms we jumped out of our seats to make sure he did not force her to bend since she will break.  He said that we should get a bone scan that can tell how how brittle her bones are (or how severe the osteopenia is).  Then the endo offers a quarterly infusion for patients with brittle bones that helps to strengthen them.  Casey has a few friends that get this infusion.  I have heard that the first years worth of infusions are very painful.  If Casey is on the line of needing it or not we will put off the infusion.  If it is something that she needs and they can assure us that she will benefit, then we will have to consider it.  Until we know more from the scan and do more research on the actually risk/benefits of the infusion we are not ready to make any decisions just yet.

The pool progress is moving.  There was some bad weather that caused some delays, and the crew was held up at another job for a little while as well.  I think you kind of expect delays on projects like this though.  They are back today and working on the next phase- there is still a good amount to be done.  It will be at least a few more weeks.  I do like to look outside and see progress- it makes me very happy.  Now, I must get serious about the diet to be swimsuit ready.  Thank goodness for privacy fences and landscaping :)

Casey started back to dance in March as well.  She is so happy at her dance class.  The first day back she talked the entire time.  You could just tell she was trying to tell everyone how happy she was to see them and all she had been up to since they saw each other last.  I can not tell you how full my heart is when I see her at her dance class.  She is excited to be there, her friends are all excited she is there, she is like every other 7 year old girl.  It really is one of my favorite things to see her do.  This year's recital is coming up soon.  We can't wait!

This weekend is the special needs Easter egg hunt at the accessible playground.  She should have fun with that.  Lots of her friends will be there.  After that we have to start getting ready for her birthday.  That's about it for now.  I will get some good pictures at the egg hunt and post those soon.  We hope everyone is doing well.

As of 3/31

Trip to the Aquarium

After a really long and hard winter Casey finally had a long over due good week.  She was up for playing with her toys, she worked hard for her teacher and therapists, she went to all of her scheduled appointments, and she finished up her week with a visit to the new aquarium.  She met some of her friends there and they all seemed to really enjoy themselves. 

When we first got there we walked around the gift shop a little.  While Casey's nurse and I kept showing her stuffed animals, toys, etc Casey kept finding the jewelry section.  Every time she got excited in the gift shop it was when she saw sparkly bracelets.  My little diva.  After some shopping, Casey saw her friends coming in from the parking lot.  She got pretty excited when she saw them.  I love when she gets to spend time with her little friends.

The aquarium is really close so when they had half price passes we bought a family pass for the year.  We had hoped to go much sooner, but Casey has just not been up for it.  Its a very small aquarium, but just right for Casey.  I think a big place would be too much for her.  They had a good assortment of tanks with different types of fish, birds, snakes and lizards.  They only had 1 turtle out when we were there, hopefully there will be more turtles next time.  The octopus was not out this time either.  Casey liked all of the different fish exhibits, but she didn't seem to care about the reptiles and she is officially NOT a bird fan. 

The let the kids come into the bird cage.  While Casey and her friends waited their turn Casey was very excited and you could tell she wanted to go in.  At first she was fine.  We would hold the birds so she could see them up close.  After a little while one got past her nurse and I and landed on Casey's head.  She kind of freaked out.  We got out of the cage pretty quick and she calmed down.  I don't think she will be revisiting the birds anytime soon. 

They had 2 big tanks.  One tank had sharks and the other had manta rays (as well as other fish in both).  Casey LOVED watching the manta rays. They would come right up and smile and splash around.  We had to drag her away from that tank.  She liked the star fish and jelly fish too, but the manta rays were by far her favorite. 

They welcome kids to touch the fish and feed them (at certain times).  One of Casey's friends was very brave and touched most of them.  Casey and her other friend were both in wheelchairs, so they were not able to get to the fish to touch them.  One of the staff members was nice enough to bring a star fish to them so that they could touch them as well.  That was pretty cool.  The place was easy to get around in the wheelchair, the exhibits just didn't really convey to people that could not bend/climb over.  As long as the staff is willing to help those that can't get there it's all good.  The lady that helped was very nice and more than happy to bring the star fish to Casey and her friend.

As we would take Casey from tank to tank she would yell at us to take her back if she wasn't done looking yet.  Next time we will have to take her food and let her just sit at the manta ray tank all day.  

The pool crew took most of this past week off.  The weather has not been cooperative so they have to wait for a dry patch of days to do the concrete.  Hopefully they will get back on track this week. 

In other updates- Casey had a doctor appointment last week and she has officially hit the 40 pound mark.  We finally got her chair fixed up too.  New handle bars and a storage tray make it SOOOOO much more usable.  Casey's seat is still the same, but to her entourage it's a big deal.  Her nurse and I were so excited to take it out for the first time and Casey thought we had lost our minds. 

It's spring break and SXSW this week.  We will NOT be going anywhere near downtown.  Casey's Cappy (my mom) is going to come in for a few days later this week.  Casey is looking forward to her visit.  Other than that we hope to just keep her well and hope the nasty winter is behind us.  Here are a few pictures from her fun day- enjoy :)

Casey watching the manta rays

More manta rays

Touching the star fish

"In" the tank

Casey's nurse petting the manta ray

Before the bird mad her mad

Watching the sharks

Checking out the jelly fish

Rock, Rock and More Rock

The pool installation officially started on Monday of last week.  This part of Texas is known to have very rocky soils.  They got about a foot, maybe a little more, then hit rock.  For the past week it has been a lot of jack-hammering.  Casey is not a fan of the noise.  Her room is on the opposite side of the house so she has been spending a lot more time in her room than usual.  Luckily she likes her room.  What's not like, fairies, flowers, and pink everywhere.  For Christmas she got some new fairy decorations to add as well.  The picture is her "Dream Fairy" sending her pixie dust for good dreams. 

The pool project is expected to be about 6 weeks, so we are just getting started.  We are all very excited about the final product.  It is going to be so great to get Casey in the water and loosen up those still little joints. 

Her seizures are a lot better, maybe 1-2 times a week now versus the 4-6 times a week we had been dealing with.  Her doctors are working to get the bleeding under control and the seizures go along with that.  She has another respiratory bug now, and sadly I am not surprised.  With the bleeding we have not been able to do her aggressive respiratory treatments so she is more prone to pneumonia.  We are working with her doctors though and hope to have a better approach to keeping her healthy.   Her blood count is finally in a healthy range.  It took some time to get her out of the anemic range, but we were able to stop the iron last week.  

Casey had Botox injections last week to loosen up her armpits and hands.  Her teacher and school PT came today and both noticed improvements, so that is very good to hear.  Her poor little armpits are so raw from her being so stiff and rolled in.  I really hope that Botox and soaking in the pool (as soon as it's ready) will help improve her skin breakdown issues. 

I think that is about it for updates right now.  Tim set up a camera to capture photos of the pool each day.  When it's done he is going to make a cool time lapse to show the entire transition.   We are putting in a really small pool; I can only imagine the time and noise that would go with a big pool.  We hope everyone is doing well and enjoying the nice spring weather (if you have nice weather that is).

Hostage Situation

We have said it many times before, but for anyone new to the page, suction is something we rely on HEAVILY!!!  That being said, we have backups and backup backups, etc.  We have some that run on batteries to use when we are out of the house, or moving around the house, and then stationary units that run a little (very little) quieter to use while Casey sleeps.

Our preferred suction machine is called a Clario.  The company that sells these no longer sells them in the US.  A few years ago we had 1 that we loved and we decided to buy 2 more from Canada.  These are our main machines.  When one's battery dies we go to the next and plug in the now dead to charge.  This made it so there was 1 in use, 1 charging, and 1 ready to go (most of the time).  When Casey's little friend Guili passed away in July they had a new model of a machine offered here in the US that they gave us to try out.  We really hoped it would be as good or better than the Clario so we could move over to it.  It worked, better than the previous model by the same company, but it's suction was not as consistent as our Clario so it was our backup that we often kept in the car and had handy away from the house.  We also had an old model from that company that we had for emergencies, but really never use.  It is so LOUD and Casey gets really angry when we turn it on.  Then we have the stationary unit in her room.

A couple of weeks ago 2 out of the 3 Clario's broke.  Since they are not offered in the US, we had to ship them to Canada for repairs (ouch!).  We still had 1 Clario and  the one from Guili to use as well as our older portable backup so we didn't worry too much.  We were using the remaining Clario and when we went to use the backups neither was holding a charge.  They both still worked plugged in, but as soon as we removed the charger they failed.  This has happened before with this brand.  If you don't use the battery often they just stop charging.  We were a little freaked out having only 1 portable, but the other units were out for repairs and we hoped they would return quickly.  We kept the remaining unit charged as much as possible and carried plugs with us everywhere we went (we always have the plug- just in case).

Last weekend our only remaining portable stopped charging!!!  Oh my goodness, we have been on edge.  If the power went out our only option would be to take Casey to the car to power the unit until we could get to power.  We couldn't go to any appointments because we had no suction from the car to where ever we were headed.  We cancelled everything out of the house this week.

Of course, Casey is sick this week.  She has been trying to get over a cold and just kept getting worse.  I called her doctor to tell her and see if she wanted us to go in for xrays, or to see her when all of a sudden I realized- WE CAN'T LEAVE THE HOUSE!!!  We were hostages unable to leave a plug.

The company sent back the repaired units and we watched tracking more than TV over the past few days.  Yesterday it was out for delivery.  We waited eagerly all day for FedEx to knock on the door.  Just before 7 the status changed to "delivered- left at door".  Tim went outside and said no package, no truck.  He walked up and down to see if FedEx maybe left a box at a neighbors house- nope.  Of all the packages to get lost in shipping, not this one!!!!  I was freaking out and Tim called FedEx right away.  Luckily he was able to figure out what had happened.  The company billed our current address for the repairs, they had our current address as the return address, but for some reason they shipped the package to old house.  Tim threw on his shoes and rushed over.  The package was there and he was able to get it back home as I was getting Casey to bed.

Talk about a stressful week.  You would think with all of the backups we have in place we would be able to avoid this kind of drama.  We planned to take Casey to get an xray this morning and then possibly to see her doctor, but now that we CAN leave the house again, she seems to be feeling much better.  I can breathe again knowing that we CAN leave if we need/want to.  Today has been great having the portable units back in rotation.

Weather Bug

This weather has taken its toll on just about everyone.  It finally caught up to Casey last week.  She started with an ear infection and has been having lots of respiratory issues.  No fever, and the stuff she is clearing is out is thick and tons of it, but it's not the color we would see with a pneumonia or infection.  I think she has a nasty cold or flu (she did get her flu shot though- so hopefully it's a cold) and an ear infection.  She has needed a lot of oxygen over the past few days and tons of suctioning.  Last night was a little better than she has done in a while so I was hopeful, but today she is back to being miserable.

The good news is that her GI bleed does seem to be a lot better with the preventative medication as opposed to taking it re actively.  The bleeding being better has led to her seizures improving as well.  That's all very good news.  I hope to talk with her GI doctor this afternoon to get the official results of all of the tests he ordered and come up with a long term game plan.  We saw neuro last week.  She said that Casey's EEG did not show any obvious seizures, but that it does have a lot of noise (abnormal activity- all of her EEGs have had that- nothing new).  She thinks that the increased seizures with the bleeding and when Casey is sick could be either Local Seizures (also called focal or partial) or it could be a pain response and not actually a seizure at all.  Since Casey has little to no control over her body movements, she said that if Casey is not able to express pain in other ways we may be seeing them as what would appear to be a seizure.  Since they seem to be better controlled now we will just keep an eye on things and go from there.

We plan on just laying low the rest of this week while we let Casey get over whatever bug this is, and then we follow up with ENT next week to see how the ear looks.  I'll try to post more next week when we have all of the labs and doctor updates.  Until then we hope everyone is well and staying warm.

2014 Already?

I am not really sure where to start.  A lot has happened since our last post (good and bad).  We have not been back in the hospital, so that's good.  I guess I will just start where we left off.

The weather has been crazy around here.  We have had record highs and lows in the same week, 2 freezes (including a light layer of snow) and I think just about everyone we know has gotten sick at some point over the past 2 months from the weather.  Our nurses are pretty good about staying home if they are sick so that they don't give it to Casey.  We usually keep her home more this time of year as well to reduce exposure.   

We had a quiet Christmas at home on Christmas day, and then the following Saturday my family came in from here, Houston and Dallas for our family celebration.  Casey did okay.  She has a hard time when her schedule is changed, but she does love to see all of her cousins.  We had to take her to our room later in the afternoon when she started to have a little melt down, but she did well most of the day.  She got lots of ponies, arts and crafts, and fairies so she was thrilled.

Since Christmas we have been having some issues with increased seizures and increased GI bleeding.  When Casey is sick and/or in pain it seems to trigger more seizures.  We think that the pain and discomfort from the bloody belly is triggering the seizures.  It's kind of a nasty cycle though, because when we focus on fixing one thing another gets worse.  She loves her shaky vest, and it is great to keep her chronic aspirations from becoming pneumonia (or worse).  However, the shaking makes the bleeding worse, then triggers the seizures.  The seizure medication causes her to be very lethargic, not wanting to cough and help clear her airway and thus needing additional interventions (such as a shaky vest).  We have been talking with her different specialist and trying to find a way to get the bleeding back under control (or ideally stopped) so that we can get her back to her normal routine.  We have a palliative team that is working set up a meeting with her neuro, GI, pulmonary and pediatrician so we can all get on the same page.  She has been having recurring eye and ear infections for years and skin breakdown as well, so that adds to the complications too.  It's just a very delicate balance to keep her home, happy and healthy

Yesterday was a rough day.  In order to have all the information in order to come up with a plan Casey had a full day of tests.  We started with blood work, then she had an eye exam (another issue, but one we have to stay on top of), then an EEG and we came home with more tests to do over the next week or so.  She is usually pretty wiped after 1 appointment, so all of these after doing 90 minutes of school at home as well, took a toll on her.  She is pretty grumpy and tired today.  Hopefully with some rest this weekend next week will be better.

There has been some good stuff too.  Casey's dance class started back up.  She LOVES her dance class.  This week the weather was horrible on her dance day and school was cancelled.  I am not sure if dance was cancelled or not, but we opted to not get out on the frozen roads.  She did get to go the week before and got measured for this year's recital.  It will be here before we know it.

Casey was able to do water therapy a couple weeks ago.  It had been a while since she was able to get up there and get in the pool.  She was very happy to be in the water then very angry when we took her out.  With the weather being cooler after swimming we put her little cap on to keep her head warm.  She looks so cute in hats.  She wore it home from her EEG yesterday too.  On Casey's way home from water therapy she ran into her boyfriend in the waiting area.  She was thrilled to see him.  Of course, because great minds think alike, he was wearing a pretty stylish hat too.  We are hopefully going to set up a day to see them soon.  She misses her DJ.

We got Casey a pass to the new aquarium for Christmas.  Between nurses being out sick, Casey having seizures, and the weather we have not had a chance to go yet.  It's really close to our house.  Hopefully we can make it out there in the next week or 2.  I think Casey will really like it.

We have been saving for YEARS to get Casey a therapy pool.  When we moved this summer we had that on our list of must haves (or the ability to put one in) on our house search.  We got our HOA approval this week and will hopefully be starting the dig early February.  It will be a very small, shallow therapy pool as opposed to a big entertaining pool.  It will be exactly what she needs though.  We can not wait to be able to get her in the warm water and loosen up those stiff little arms and legs daily.  I really think it is going to make her so much more comfortable and happier. 

Tomorrow is February and then it is just a few months before we have an 8 year old.  WOW!!!  It doesn't seem possible that she is about to be 8.  We are hopeful that 2014 will be her year.  With the therapy pool and getting her GI bleed under control we think she will be able to make it so.  She is due (over due) for a good year.

Santa Clause is Coming to Town

We are getting ready for Christmas around here.  Casey has been feeling a lot better.  She still only has a little energy, so we have to limit what we do, but she is getting there.  Last weekend we had our second annual Special Needs Christmas party.  She had a good time and got to see some friends, sing songs, and of course see Santa. 

There are times when she does things just like every other 7 year old girl.  These things may be complaining when we brush her hair, or her latest is adding new things to her wish list every time we ask.  These are little things, but they always make my day. 

This weekend we were snuggling on the couch out at home watching TV when we heard sirens getting louder and louder.  Then we heard Christmas carols.  I put Casey on the couch and went to see what was going on.  It was so cool.  There was a fire truck driving through with Santa on back tossing candy and waving to all the kids in the neighborhood.  Casey thought it was pretty cool (and a great chance to add more to her list).  We are so happy that we moved.  We have met some of our neighbors and so far everyone has been so wonderful. 

We are going to get some labs this week to make sure that Casey's iron is holding strong.  Other than that it should be a pretty slow week.  Christmas day we plan to just have a casual day with some local friends and family.  The Saturday after Christmas all of my family is coming in to do a big family dinner and celebration.  I am sure Casey will enjoy spending time with all of her cousins again. 

We wish all of you a very merry Christmas and a safe and happy New Year! 

New Record

Every so often I convince myself I have learned all I need to know to manage Casey's care.  I am always wrong on that one.  Sometimes it is big things I have to learn sometimes small, but I am always learning something new.  She does like to keep us all on our toes.

Over the 7 plus years we have had more than our share of pneumonias.  We have gotten really good at spotting them early on and taking the steps to get ahead of them and avoid hospital stays.  We have a well stocked home (we call it the BICU- Barnes ICU) with all of the tools we need to fight pneumonia and manage Casey's other medical needs.

For a little while now Casey has just been off and we could not figure it out.  Last week we got the diagnosis of pneumonia and we were stumped.  She did not act like she usually does with pneumonia.  Everything seemed so different, but we went with it and have been trying to get her over it since.  The low blood count added some complications, but we thought we were on top of things.

After yesterday's labs we felt fine keeping her home and letting her rest then retest next week.  She had a rough night and was looking pretty bad this morning.  There was some GI blood (not as much as Saturday, but some) and her heart rate was really high again/still.  She just seemed miserable.  After talking with her nurse we decided to go ahead and call her pediatrician.  We knew that would most likely result in a trip to the hospital, but if that's what she needs then that's what we will do.

In order to avoid the ER and make the trip as short as possible we got Casey's palliative team involved as well.  It took a couple of phone calls, but just before lunch they called and had a room for us.  The plan was to come in, get some blood, and then get back out.  They want Casey as far away from the hospital germs as possible.

After we got into her room the palliative doctor came in and was able to put some pieces together for us.  Casey's previous pneumonias have been aspiration pneumonia (infections caused by fluids that she has gotten into her lungs that should not be there- refluxed food, secretions, etc).  This is not an aspiration pneumonia, but something new for us.  This is called Mycoplasma Pneumonia.  One of the symptoms with this type of pneumonia include Hemolytic Anemia.  Another symptom is ear infections, which Casey has now and I did not even mention since she gets them fairly often.  This explains so much.  This is why we were not able to identify it as a pneumonia early on, this is why she has not been able to replenish her blood count, it all makes sense now.  And, I have learned about a new medical issue yet again.

The doctor said that a while back they use to test for this by taking blood and putting it in ice water.  If it had little clusters form it was this type of pneumonia.  Of course, even though that method worked, they now use much more complex testing for diagnosis.  He has seen enough of these over the years to just spot the symptoms right off.

Now that we know what we are dealing with and Casey has gotten some blood, hopefully we can get her over this and just relax for a while.  As much as we really did not want to come to the hospital, if all future visits can go like this I think we are all set.  We were in around lunch and home before 8PM.  It is the shortest hospital stay ever for our little one.  Her vitals all look much better and she is now snuggled up and tucked in for the night in her own bed.

Thanks again for all of the thoughts and prayers.  She is looking much better tonight.  We are looking forward to a nice quiet Thanksgiving weekend at home now.

Update

The past month or so has been all over the place.  Casey will act like she is getting sick, then as soon as we are ready to call the doctor she has a great day.  The great days became less and less and eventually turned into not so bad hours so we did get her checked out.  Last week her doctor ran a bunch of tests and determined that Casey has a pneumonia and that she is very anemic.  A healthy hemoglobin for Casey would be 12-14, and last week Casey was at 8.1.

In April her hemoglobin fell to the low 7's and we had to get a blood transfusion before heading home.  Casey has what is called gastritis.  She has been having issues off an on for a while since her previous gtube started to have so many issues.  while things are better since closing up the site and moving to a jtube, she still has frequent GI bleeds.  The ulcer in her stomach will bleed and make her very uncomfortable.  When it gets bad she can even reflux (throw-up) old blood.  Every so often her body will have a hard time creating enough blood to compensate for this loss, especially when her body is hard at work fighting off a pneumonia or other infections.

We have had Casey on antibiotics and increased respiratory treatments to help the pneumonia.  She is clearing stuff out and slowly but surely we are seeing improvements.  We added iron supplements last week to help with her anemia, but she had a bad day on Saturday with more GI bleeding than usual.

Her doctor had us take her back in for follow-up labs today.  The hospital was prepared to admit her for a blood transfusion if the labs looked bad.  The labs were not great, but the difference was pretty small.  She is now at 7.7.  Being that she is starting to get over the pneumonia, there is a huge risk of her getting very sick if we take her to the hospital right now.  She has a compromised immune system on a good day, and when she is already sick, exposing her to the germs found in hospital (especially this time of year) is very scary.  We are going to keep her home for another week and see if we can get her count up with iron instead.  Hopefully if her body is not having to fight off the pneumonia much longer it will better be equipped to rebuild her hemoglobin count.  We will get her labs checked again next week and go from there.

Hopefully if we can stay home and have a nice quiet week of recovery labs will look much better next week.  We hope everyone has a wonderful Thanksgiving.  We will post updates next week when we do the next round of labs.

Casey is the current cover photo for Mommies of Miracles, and I thought I would share the picture with you all.  An old picture, but one of my favorites...

Thankful

On Facebook it is pretty common to see people post "days of thanks".  Each day from November 1st through Thanksgiving they will post something for which they are thankful.  I like to read these, but I don't usually post them myself.  It's been a rough year for us and I am feeling especially thankful right now so I thought I would do my own "day of thanks" here instead.

I think it goes without question that I am thankful for my beautiful daughter and my amazing husband.  I am truly blessed to have such a wonderful family that fills my heart.  They are my whole world and until them I did not know how completely I really could love someone.

I am thankful for all of our family and friends.  Raising a daughter like Casey requires a lot of help.  We have a support system that keeps us going.  Whether it is someone just picking up the phone when I need to vent, meeting me or Tim for lunch or happy hour when we need a break or picking me up from an appointment so Tim can stay home with Casey when we don't have a nurse.  People being there when we need them means a lot to us.

I am thankful for my other special needs parent friends (that's a mouth full).  They "get me" in ways others try to, but just can't.  Some of these friends I know in person others I know online, but you all hold a very special place in my heart.

I am thankful for our home health nurses.  We have had some that were not so great over the years, but when we find the good ones they make life so much easier.  They love Casey as if she were their own and are there to help out when we need them most.  I can call them when they are not here if I have a question, some come by just to visit, and they have all become like family to us.  Being able to leave our house and know that Casey is safe and in good hands is a huge deal to us and something we will never take for granted.

I am thankful for the top notch team of doctors that care for Casey every day.  I can call or email them day or night and they all make it a priority to get back to me right away.  We jokingly say Casey gets VIP treatment at doctors, but she kind of does.  They get her in without long waits, they call and check up on her, they work together to make sure that she is getting the treatment, supplies, etc that she needs.  They also go to bat with insurance companies to make sure that everything is covered. 

I am thankful for Casey's therapists and teachers.  She has one therapist that she has been working with for years and she is more like an aunt to Casey than her PT.  After moving we got a new set of home therapists and teachers that have so far been really great.  Her new teacher is very patient and modifies her lessons to things that interest Casey.

I am thankful for our DMEs.  Some I have better things to say about than others, but they provide us with the supplies and equipment we need to keep Casey home, healthy and safe.  We have one driver that goes out of his way to make sure Casey is taken care of.  When we change her order, or if they mess something up he will call us before he leaves the shop to make sure that we asked for the change and if not, he finds what's missing and gets it right.  Efforts like his, and the personal touch that some of our DMEs offer brighten our days.

I am thankful for many people for the different roles that they play in our lives.  Aside from people I am also thankful for all of the equipment we use every day that has enabled us to keep Casey at home and well.  I am thankful for the coffee and chocolate that get us through long nights and rough days.  I am thankful for our adapted van that makes traveling with Casey so much easier (on all of us).  I am thankful for Casey's iPad that brings her so much joy, and for My Little Ponies for the same reason.  I am thankful for Tim's tools.  He is so content working in his shop, and he makes some pretty cool stuff too.  I am thankful for the internet.  On days when I can't leave Casey's side (home or in the hospital) it helps me stay connected to the rest of the world. 

I am also thankful for all of you reading this.  There are so many people that follow Casey's journey and keep her in your thoughts and prayers.  Whether I know you or not, I appreciate your kindness and that you keep Casey in your hearts.  If I don't get a chance to post again before next week, I hope everyone has a wonderful Thanksgiving.

Fall is Here

I love this time of year.  The weather cools off a little, but not too much.  You can go outside without melting.  When you get in your car, you don't burn yourself with the metal from the seat belt.  Fall is definitely my favorite season.  Casey really likes this time of year too.  She has been having a rough time with the weather going up and down so much, but she is adjusting and doing okay.

On Halloween Casey made her rounds visiting all of her doctors' offices.  She has been doing this every year for a while now.  It's a special day for her, and one that we look forward to all year.  She gets all dressed up and they get to see her as a visitor instead of a patient.  Her doctors and their staff really look forward to seeing her come by.  We make little goodie bags and deliver them with a little note thanking everyone for all that they do for Casey each year.  They usually have stickers and other fun stuff that she gets to take home in her trick-or-treat bag.

Our new neighborhood had a block party Halloween evening.  We were really excited about going, but Casey had been having a rough few weeks so the trip to the doctors was all she was up for that day.  We tried to get her ready to go to the party and instead we had a full melt down and a very upset little girl.  So I sat with her and Tim handled the trick-or-treat traffic.  He went all out with a spider theme on the house this year.  He did a great job and it was a huge hit with the neighborhood.  Some of the dads and kids in the neighborhood had to come in and check out his set up.  He used our projector and some film on the windows to make it look as though our walls were crawling with big spiders.  It was pretty cool, and much more creative than I could ever come up with.  Hopefully next year we can make it to the party too.  We did get to meet a lot of the neighbors when they came by, so that was nice.


After Halloween my mom and her husband (Cappy and Grandpa John) came in to town so that we could move my grandpa (GP) to a new assisted living facility closer to us.  The move went pretty well.  It was much easier than moving him into assisted living a couple of years ago for sure.  The new place is much bigger and more active.  This week they have a theme week of 'Country Western'.  They invited Casey to come over today while they had miniature ponies visiting.  Casey and GP had a great time.  They had 2 ponies.  The bigger one Casey didn't seem to care much about, but the little one and her hit it off.  The little one came over and laid her head on Casey's lap.  Casey was able to pet the ponies head.  The pony did not want to leave Casey's side.  They had to pull her away.  When we were leaving the building the pony was by the front door.  It came right back to Casey and gave her some more snuggles.  I think it's safe to say Casey made a new friend today.  This girl loves her ponies.

Last week Casey saw GI.  She is up to 37.5 pounds, as of a week ago- probably closer to 38 now.  It took us so long to get some weight on her.  I'm glad she is finally getting some weight, but we have to be careful that it is not too much too fast.  Picking her up and carrying her is getting much harder now too.

Her new teacher and therapists are working out pretty good.  They come to the house a few times a week.  Some days Casey does better than others, but the teacher is really good and patient with her.

We switched nursing agencies in the past couple of weeks as well.  Luckily all of Casey's nurses were able to get on with the new agency so that we did not lose our nurses.  We were having a lot of issues with the scheduler and administration at the previous agency and just could not deal with it any longer.  The change has been pretty good so far.  We are still learning who to call for what, but we're getting there.

As always, we hope everyone is doing well and enjoying this wonderful fall weather.  We will post more soon.

Halloween Prep

Casey had to miss the trunk-or-treat yesterday.  We were really hoping she would be up for going, but she was having another rough day.  Trunk-or-Treat is something that I heard a lot about last year.  It can be any group of people/businesses that get together and line up their cars.  They all have treats in the trunks and instead of going door-to-door, kids just walk (or roll) down the street and stop at each trunk.  I heard a lot of friends talking about their churches doing them last year.  The Seton Williamson County hospital offered one yesterday for kids with special needs and their siblings.  We were so sad to miss it.  Hopefully they will do it again next year.

We did finally get Casey to decide on her costume.  She is going to be a fairy, again.  This seems to be her go to costume choice.  This year she is a punk rock rainbow fairy.  It's actually really cute.  The kids are supposed to wear their costumes to dance this week so we got it just in time.

mommiesofmiracles.com/halloween

While on the subject of Halloween and trick-or-treating, I want to remind all of you about a program Tim and I started a few years back.  We recently merged our efforts with Mommies of Miracles, and we are hosting the program there now.  The program is simple, and EVERYONE can participate.  You do not need to have a child with special needs, or any children for that matter.  If you plan on handing out treats on Halloween, you can participate.  By adding (you can keep candy too- this is not an anti-candy thing) a non-food item (not a healthy food, but a non-food item) to your treats you make trick-or-treating a fun option for ALL kids.  It is really that simple.  On our site we offer a decal.  If you print out this decal and hang it on your home, trick-or-treaters will know that you offer non-food treats.  We also have a registration system that will allow you to register your address (we don't need email, phone or even your name- just an address).  People can check the map for registered homes nearby to better plan their routes.  For little ones that can only do a few houses, this is very helpful.  We also offer a brochure that you can download and print to help spread the word.  Hang the brochure up at work, school, church, etc to let other know how easy they too can make a difference this year.  You can email your friends and family the program link. If you are on Facebook, Twitter, Instagram, Pinterest, etc please be sure to share the link there too.

We are counting on all of you to not only participate, but to help us spread the word as well.  We have found that most people really do care and want to help kids like Casey.  They just need to know how.  This is a simple way that everyone can make a BIG difference for kids all over.  This is not local, this is everywhere and growing every year.  Thanks for your help, we appreciate it, as does Casey and all of the other kids like her out there that get to participate in Halloween fun thanks to YOU!

90th Birthday & More...

For all of you that know us, you know we are big fans of Halloween.  Growing up it was always one of my favorite holidays.  Casey has not been feeling well off and on for a few weeks now, so we have not picked out her costume yet.  She is gong back and forth between a fairy (surprise surprise), Rapunzel, or the little girl from Despicable Me.  If we find a good Pinkie Pie or Twilight Sparkle costume it may make her choice even harder.  Who knows what she will actually pick when she is feeling well enough to go shopping.

We have been trying to do some Halloween decorations too.  I still need to drag out the stuff we have stored.  Tim made Casey a Tinkerbell Jack-O-Lantern with some help from John.  Casey made a very stylish ghost.  We are setting up some creepy spider decorations too.  I will have to post some pictures of the spiders when we get them all done.

My grandpa turned 90 on October 5th.  90 is kind of awesome!  We had a little party for him at his old church in Temple.  I think he really enjoyed it.  Lots of family and friends came to wish his a happy birthday.  We hired the baker that did Casey's pony cakes to make him a special cake.  It was very yummy.  Unfortunately there was yet another scheduling issue with nursing (I won't waste too much time on the details) but it led to Tim not being able to go to the party.  I thought I was going to have to miss it for a little while too.  Casey had a bad week prior.  Luckily, she perked up just in time for me to be able to make the party while she and Tim stayed home.  After the party we had a house full of family.  Casey did great.  I am always worried she is going to have a melt down with a full house (as she has many times in the past).  She seemed to really enjoy having her cousins over to play.  Counting Casey there were 7 kids between the ages of 5-12.  We broke in the new house and had a nice time.  The kids decorated little pumpkins and had a lot of fun.

We hope that everyone is doing well.  Hopefully we can get Casey feeling better and out to pick out her costume soon.  We will post more soon.

Bedroom, School, Dance and More...

Casey's room is all setup.  She loves it.  When we take her to bed at night she is so happy to be in her fairy room.  This morning her nurse had to drag her out of bed at 8 (that's really late for Casey).  She has little fairy touches all over the room along with some of her favorite things.  She picked fairy ballerinas for the bedding and fairies on the wall.  Then she has a bunch of Tinkerbell things that she has had for a while on her shelf and around the room.  She proudly has her dance trophy on display.  She was so angry when we packed it to move.  When we unpacked it and I showed it to her she was very excited to see it again.  She loves to see her name so Tim hung her C-A-S-E-Y letters where she can see them from bed.  Then her nurses have their little area next to her and Al (the fish- I think this is Al III).  On the other side of her little entry area is her own bathroom.  We took her to Bed Bath & Beyond one day and let her pick out her own bathroom stuff.  We showed her a bunch of different sets and she was not impressed.  When we showed her the Gerbera Daisy set she lit up.  She knew what she wanted and we finally found it for her.  We are going to have to modify the bathroom some to make it fully accessible so we will show pictures of that area later.  For now we'll share some pictures of her fairy bedroom.

I got all of Casey's paperwork in to her new school and had a meeting with them yesterday.  We went over all of Casey's needs and what she likes, doesn't like, etc.  The teacher and OT came out this morning.  I guess technically today is Casey's first day of 2nd grade.  She seems to be cooperating so far.  They brought toys so I am sure that helps.  I am very optimistic that she will do well with school (at home) this year.

Dance started a couple of weeks ago.  She was having a rough day on the first day back, and we had a scheduling conflict last week.  So she starts dance today.  The first day of school and dance on the same day!  I think she will be wiped out by the end of the day today.  She will be so excited to see her little friends at dance.  She loves to be around her friends. 

We went from a 1.5 feeding tube to a 1.0 a few weeks ago.  The 1.5 was too long and Casey just leaked non-stop with that one.  The 1.0 was much better for leaking, but the site looked a little off.  We took her in to get it checked out and they decided to go up to a 1.2 in case the 1.0 was just a little bit too snug.  The 1.2 came yesterday and we switched it out before taking her to bed.  It immediately looked much better.  1.2 is the only size between 1.0 and 1.5 so I hope that it does the trick.  We will be able to tell for sure in a few days. 

Casey signed up to be part of a new group.  It's called I Run 4.  They pair runners (usually healthy adults) with children (and some adults) with special needs.  The idea is that the runner will be motivated by their "buddy" and then the buddy can root them on and cheer for them "virtually".  They have a lot of runners and were short on buddies so I decided to sign Casey up.  She got paired with a lady that lives in Virgina.  She posts a sweet little message to Casey every day about her run, bike, etc and that she thought of Casey while she was out there.  She ran a 9-11 race in DC and sent Casey a really cool package.  She was able to get an extra medal and bracelet for Casey from the race.  She included an elephant book, a very sweet card, some hair ties and a very Casey very blingy pink watch.  Casey loves to get mail and her eyes got bigger and bigger with each thing that we pulled out of that package. 

Casey had a few appointments last week.  Ortho did not make any changes to her plan and said she looks good.  ENT had to clean out her ear (she HATES that part) and started her on a new drop.  I think her infection is finally clearing up.  She has a couple more appointments next week.  As long as nothing new pops up, hopefully we can have a few weeks doctor free at that point. 

I think that is about it for now- I think that is probably enough.  Here are some photos.  Enjoy :)

First Day of 2nd Grade

Nurse's Area w/Al

Casey's Bed & Fairy Art

Dresser area

Casey's Letters

Casey's shelf w/her trophy

Casey's watch & 9-11 medal

Where's Casey

We don't have blinds installed yet & Casey has not been happy about the afternoon sun.  She has discovered home made tents (with the help of her nurses).  Can you find Casey?  

Our New Home

We have moved!!!  Monday after work Tim and I started loading the truck (& worked through the night).  Tuesday we had some scheduling issues with nursing so Casey ended up going to closing with us.  As soon as we got the keys we headed to new place to start unloading.  Luckily we had a nurse by that time to stay with Casey.  My sister and a friend came to help- thank goodness.  We did 2 truck loads and a few van loads Tuesday.  We were able to get most of the house moved.  Casey seems to like it.  Her fairy room is not quite ready, but we're getting there.  We'll post some pics as soon as its ready.  We love the new house and the neighborhood.  I think we're going to be really happy here.  We'll send an email out in the next few days to close friends and family with our new address.  

We hope everyone is doing well.  For all those getting back to school we hope you have a fantastic school year :)

What Was I Thinking?

Every 6 months Casey has to see ALL of her doctors.  She sees some every 2, 3 or even 1 month, but without fail at that 6 month point she is due to see them all.  I somehow managed to schedule ALL of her 6 month appointments starting last week going through the 1st week in September.  I had them scheduled 6 months ago- before we started to plan a move or knew we would be short handed with nursing.  Part of me thought maybe I should reschedule until we get resettled, but I knew she needed to check in with everyone so we kept them all on the calendar. 

It has been CRAZY busy around here.  We only have day nurses 2 full days and 1 short day a week right now with 5 nights covered.  Trying to schedule everything for Casey in those 2.5 days as well as get the grocery shopping done, clean the house, sleep, etc. has been a challenge.  I am planning a really long nap (like an entire day in bed) as soon as we are settled in the new place. 

Last week Casey had her follow up with GI and Rehab.  These were both expected to be brief appointments, neither were.  They were both good, but lots of stuff came out of both. 

The good news is that Casey finally gained some weight.  She is up to 31.5lbs now.  I was so happy to see that number.  Casey has been having some retching issues that I was really concerned about.  Being that she is feeding into her intestines instead of her tummy, I don't understand why she would be retching so much.  GI wasn't really sure why either.  He did give us a medication to help reduce it.  So far I think it is helping some.  The side effects are drying her out and/or making her tired.  We are not seeing either of those occur, so I may ask to go up a little to see if we can get the retching totally stopped.  The small dose we started on has made some improvements.  While we were there I did mention that we are still battling the endless bile leak.  We have been able to make her skin look better, but the leak is still pretty bad.  He did not have much to offer for that (as expected).  However, later that evening he called and wanted to see if we would be willing to try a smaller size tube- YES!!!!  We took Casey in this morning to get the new tube put in.  I was a little worried it would be too tight, but it seems to fit well.  We will try it over the next few days and see how it goes.  I am very hopeful that we will have a big difference in leakage.

Rehab was a little worried about Casey's thumbs getting more retracted and when I complained about some odor issues with her armpits she said that Casey's shoulders were rolled in a way that did not allow much air through.  She suggested we do Botox to get both of these areas open more.  We have tried Botox in her thumbs, and this is actually the only place we have ever seen it work so I was all in favor of doing her thumbs again.  We have never tried her shoulders before, so I guess we will see.  Her arms, legs and salivary glands never showed any improvement with Botox.  She is really contracted in her arms and legs though, and her salivary glands are a bit of a mystery to begin with.  The doctor seemed to think there is a good chance we will see some benefit from the shoulders.  It would be great if it can help with her BO issues.  She also set us up to get new thumb splints made.  Casey had some hard shell hand splints that we never use since they are hard on her skin and some neoprene splints that don't do much.  She wants us to get neoprene style with a reinforced thumb.  We have an appointment next week to get the splints made.  We went back in to see her this morning after getting the new feeding tube and had the Botox injections done.  Hopefully we will see the Botox kick in over the weekend.  As of right now, I have a very tired and worn out little girl asleep on the couch.  She had a hard morning.

We see ENT and Pulmonary next week and then Ortho the week after.  These are all standard follow ups too. 

We had a new night nurse come by last night to meet us.  She will start next week.  It usually takes 2-3 shifts before I am able to sleep while they are here (and for us to know if they are a good fit).  I hope that it works out- I need to sleep! 

We talked with Casey's new school district yesterday.  We are going to give home bound school another try.  I have heard good things about the new district.  We should have a meeting to set up the schedule and services right after we move in, and then start services right away.  We will be doing OT, PT, Speech and Vision as well as education. 

Casey starts dance again right after we move too.  The new house is really close to the dance studio.  Casey will be so excited to be back with her dancing friends. 

Well, that's about it for now.  Back to packing! 

We're Moving!!!!

As many of you may know, we have been trying to find a single story home for Casey for a while now.  The bigger she gets the more space she needs and we are running out of room on our first floor here.  Well, I am very excited to announce that we have found a place and we are moving later this month. 

Our house sold officially yesterday.  We are leasing it back through August.  We found a few single story homes we like in the Round Rock/Pflugerville area.  After a lot of work, and careful consideration we have picked the one that works best for us.  We will wait until we close on it to share the address (I don't want to jinx anything).   I can tell you all that it is in South West Round Rock. 

Casey was not happy about us showing our current house.  We had a stager come in that had us put a bunch of things away.  Casey yelled at her when she suggested we move or pack any of Casey's things.  Then when people would come to see the house we would hang out in her room out of the way.  With all of her medical equipment we could not just up and leave for showings.  She did not like strangers coming into her house.  That part is all over now, thank goodness.  Early on she was really anxious about everything.  We tried to make her excited about the move.  We told her she could redecorate her room however she wanted.  She loves to shop and it did help distract her some.  She has picked fairies for her new room.  I really expected her to go with ponies, but she wants a fairy bedroom.  It should arrive later this week, but she doesn't get to see it until we move.  She is going to have a really hard time in the last few days when everything has to be packed up.  We will use the fairy room as motivation to try and keep her from totally freaking out.  She got so worked up early on that we saw an increase in seizures.  I think they were stressed induced.

We have a lot of work to do in the next few weeks, but we are really excited.  A single story home is going to be so much easier for all of us.  Since we are changing school districts now, I think we will try home-bound school one more time (fingers crossed). 

We'll post pictures and more details soon. 

You Have to be Kidding Me!!!

Not even an hour after I posted how we finally have a nurse that we like picking up 2 days a week, I get a call from our agency saying that she can only do 1 day, and it is much shorter than we had planned.  Ugh!!!  I guess 1 short day is better then none, but so frustrating.

Updates

We had a follow up with Casey's dentist last week.  Casey has been teething (really since she was about 9 months old).  She has lost 10 teeth now and has 15.  Her molars are all coming in, and they look so painful.  Some are coming in her tongue bed, some on the outside of her gums and some where they should be.  Since she doesn't suck/swallow at all and her mouth stays open she is not giving her gums/teeth the feedback they need to know where they should grow.  The dentist is not worried about them (yet) but does want to keep an eye on them to make sure as they come in they don't get into areas that will lead to trouble.
The neurologist was happy with how Casey is doing during our recent follow up.  She still has some seizures, but now that she is able to get the medicine (it just oozed out with her old gtube) her seizures are much better controlled.  We started a new medication at night that is actually a blood pressure medicine, but it helps to keep her heart rate down some and it loosens her up a tiny bit.  We just give it to her at bedtime to help her get a good night's sleep.

We have still been having a hard time getting our nursing shifts filled.  We finally had a nurse start last week that we are excited about.  We have a nurse that as been with us for a while doing 2 days and this new nurse is also going to do 2 days.  We just have 1 day shift not getting filled right now.  The last week of August there is a nurse that we have been with for a while that thinks she can pick up our remaining day.  One of our night nurses has been out for a few weeks with her own family issues.  She works 2 nights a week and we hope she will be back tonight.  It is exhausting doing the night shifts and still trying to get anything done during the day. 

We are still trying to get Casey to take as much volume as she can and trying to get her to gain some weight.  The jtube site has it's good days and bad days.  On a good day it leaks, but not puddles.  We may change the dressing every 3-4 hours on a good day.  On a bad day she still pours out the site and we are changing it nonstop.  She is leaking bile instead of food.  With the gtube she leaked food that did not harm the skin around it.  The positioning of the gtube caused pain and a lot of issues, and when she would leak food she also lost a lot of her medicines.  Now the jube is keeping the food and medicine which is very good.  However, the bile that is leaking out is causing some skin issues around the site.  We use all types of dressings and creams to keep it off of her skin, but especially on bad days it can really look red and inflamed.  The positioning is better than the gtube, so we are still in a much better place than we were a few months ago.  We just have to do our best to stay on top of things and keep the area as dry and clean as possible.  It is a challenge when we go anywhere.  Getting her in just the right position, and keeping her there, as proven to be tough.  At least 50% of any outing includes a bright yellow, bile drenched shirt.  Things could be worse though- heck they were worse just months ago.  All in all we are figuring things out and doing the best we can.

We signed Casey up for dance again this year.  It starts next month and she can't wait.  We made sure she is in the same class as some of her friends too.  She has missed them over the summer break.  In addition to dance Casey has still been doing music therapy twice a month.  She does music therapy at home.  Right now she is still our little drop out.  We are thinking about (have not committed to the idea) of trying the home bound schooling option again in the future.  We have decided she will not "GO" to another school unless it is Rosedale.  As of right now we can not get a transfer to attend that campus.  If that ever changes she can go to school again.  Other campuses (in our opinion) are just not prepared for her.  We don't have the time or energy to be the guinea pigs either; not to mention the stress and risk that puts on Casey.

We have a few more standard follow up doctor appointments coming up in the next few weeks.  Other than these we are just focusing on the same old stuff.  We hope everyone is enjoying their summers.