Saturday, December 31, 2016

Rehab Day 5

It was an easy therapy day here at rehab, with Abby only having an hour each of pt and OT.  

Her PT tried out electrical stimulation on her leg muscles and Abby did great!  Her PT wasn't sure Abby would tolerate it, but she played a bowling game like nothing was different!  We will work to increase the stimulation throughout her sessions from here.

In OT, Abby did a great job with her buttons and pulling on her pants!  We took a pair of jeans to pull on over her leggings (since it is an open gym), so it was extra challenging.  None of this is easy for her, but she is working hard.

I'm still not having much luck in the eating department.  She eats a few ounces of applesauce or pudding, but that's about it. She did chow down on dry Cheerios tonight while we watched a movie, so that made me happy.  It's nice to see her at least enjoying some kind of food.

Abby and I had lots of visitors today, starting with Nina and Paw Paw.  Nina brought her magical suitcase of fun (she fills a purple suitcase with toys so Abby can play with them while they are there!) and also brought Abby's new Calico Critter camper they got her for Christmas.  She was a happy girl!

Nina also did her hair in a fancy ballerina bun, as Abby called it. She got lots of compliments today!  
 

 

Caleb and Matt also came up, and everybody went to OT with us.  It was a party!  :). 

Pop came up a little later to visit and bring Abby and Caleb their Christmas presents from Grammy and him.  Caleb got an architecture Lego set of The White House and Abby got a Fuji Instax camera (similar to a Polaroid of my childhood!). They were both excited and Abby has been busy taking pictures.  I told her she needs to take it easy!


 

Tonight, Abby "cashed in" her therapy stars and watched an American Girl movie with me. As usual, bath time is not her favorite, but we got through it without her yelling at me today.  :)

Tomorrow is a SLEEP IN day with noooooo therapies! We are both excited for the break and may venture out on a journey or two....but not until we have both officially slept in!!
 
 

Friday, December 30, 2016

Rehab Day 4

Guess Who Match Up, Candy Land, Chutes and Ladders, Memory, play dough, and string beads....all things Abby did during therapy today!  Her therapists are fantastic at using toys and games as distractions and motivators during therapy.  She works SO hard, but she gets to have fun while doing it!  Abby's attitude toward working was better today,which made things easier too!  I think she is starting to warm up to them. :). 

Today during PT, Abby worked on walking, climbing stairs, standing up stall for long periods, reaching, standing on tiptoes, and keeping her balance on unstable surfaces.  In OT, she worked on her pincher grasp, buttoning and unbuttoning a shirt, and lots of core strength.  

Feeding was still rough and Abby didn't do much more than eat a few Cheerios and take a few sips of water.  She was doing so well with the liquid until the end, when she had a coughing fit.  So she still can only do thin liquids with the therapist--who won't be back until Tuesday.  Abby is going to be so bitter!  She took a tiny sip of a thickened juice today at lunch, but still hated it.  I've been most successful with pudding today, but it's still small amounts.   Ugh.  Thankfully, I packed the pounds on her before surgery in an effort to give her some reserve.  At least she has a little wiggle room when it comes to her weight.

Matt and Caleb came for a surprise visit today on their way to indoor skydiving (a Christmas present from my parents).  They brought this beautiful quilt made for her by a VEPTR grandma and her granddaughters!!  Of course, it's very purple!  It was so very sweet of her to make it for Abby when she has never even met her!  Love our VEPTR friends!
 

Tomorrow is a short day of therapy with lots of visitors coming.  Should be fun!

Thursday, December 29, 2016

Rehab Day 3

First thing's first:  take a look at this cuteness! :)

 

We met Abby's primary PT today and she is fantastic!  She totally gets Abby and plays all kinds of games while doing therapy.  I think they are going to get along great.  

She had a very full day today with 2 sessions of PT, a session of OT, 2 sessions of feeding therapy, and a session with psych (part of being in the spinal cord injury program). She worked hard, for the most part, and earned lots of cartoons stars.  5 stars = 1 episode of a show.  She earned 13 today!  Cartoons are motivating for her, so this system works well.

I took a picture of Abby's breakfast of sausage and eggs so that you could see the "yummy" purées she is being given. 

 

Needless to say, she didn't eat a bite and I asked if we could work on improving that a bit to make it more appetizing. The therapist trialed a "finely chopped" meal and Abby did great with it.  It is just regular food in very tiny pieces, instead of looking like...something Chloe pooped out.  Tonight, she ate 1/4 a sweet potato and 1/4 a serving of turkey--by far the most she has eaten since surgery.

She is working on thin liquids during therapy and is improving by learning how to take tiny sips.  She's not quite ready to do it outside of therapy yet though. These thickened drinks are not her thing, so she's basically on a liquid strike.  We are pushing water through her tube until she can drink it again. 

Lots of progress!  This is a slow and steady road we are traveling, and we expect that our stay will be longer this time.  They are setting up school here, which means they are expecting a longer stay as well.  Honestly, we are fine with it as long as they can get our girl back to as close to her baseline as possible.  She's got lots of dancing to do!

Wednesday, December 28, 2016

Rehab day 2

Abby had her first day of therapy today, and it was a busy one!  She started out with 2 hours of pt, which was a lot of boring assessments  that had to get done.  It gets much more fun from here!  The pt did use kinesio tape on her to try to strengthen some muscles.  It also helps with scar sensitivity, so we are testing some things out!  OT also did a bunch of assessments, but they were slightly more fun than pt.  :). 

I'm really impressed with the spinal cord injury program already.  I think it's exactly the right place for Abby!  It is extremely well known and she will be in the program for as long as she needs it!  They do all kinds of outpatient therapies, including aquatic therapy (when she is able to do that).  We will be continuing her therapy here after she goes home, because the level of therapy they can give here is just incomparable to anything she would get at home.  It's a drive, but it's worth it!  If you are interested in learning more about the program, go here:  https://www.kennedykrieger.org/patient-care/patient-care-centers/international-center-spinal-cord-injury

She's started having some spasms today that have come on fast and furious.  It's unusual for her to have them this far out from surgery, but nothing about a Shilla recovery is "usual!"  She's been needing lots of meds pretty much around the clock and is waking up at night in pain.  I'm still trying to decide what med regime is best.  We have tried a few different things so far.

We have been concerned for a while now about Abby's swallowing.  Eating has been extremely challenging and food has been getting stuck in her throat because her neck is hyperextended.  She has also been choking on her medicines and drinks, which is making me nervous.  After an evaluation today, the team decided that she's not safe with liquids or basically anything but puréed foods.  She's now on a thickener that is making it a nectar consistency, which she does not like AT ALL. Her dinner tonight came puréed....puréed beef and puréed Mac and cheese.  Needless to say, that got thrown in the trash!  I'm going to have to talk to them tomorrow about finding her some things that will be appetizing and safe...cuz that beef was definitely not appetizing!  She ate 6 bites of applesauce tonight. It sounds like we are increasing her feeds soon too, but I think the team is still figuring out what to do about that.  

That news was sad to me because she had come so far with eating this year.  She always regresses, but not like this.  She can't even take her meds by mouth anymore. And it's the saddest because she wants to eat.  It's not behavioral this time.  It's just structural, and it's not safe.  Ugh.

However, we did have several lovely bright spots in the day!  At lunch time, Abby's wonderful teacher and one-on-one came to visit!  Her one-on-one even "snuck in" some food for Abby to enjoy!  (This was pre-swallow eval!).  Abby absolutely adores both of them and I saw more smiles during their visit than I'd seen in a week!  It was so good to see them and to know how loved Abby is.  She is in the best hands!

 

 

 

This evening, The Bevards came to visit!  They are always full of antics and laughs, and tonight didn't disappoint.  They made Abby laugh a lot!  Kids (except siblings) aren't allowed on the unit during cold and flu season, so we met them in the lobby.  We ventured over to Hopkins and found an area of the cafeteria where we could spread out.  Amy brought a craft for the kids to do, which everyone seemed to enjoy.  Abby loved having them there and cried when they left.


Matt and Caleb are coming up tomorrow after Abby has a very full day of therapy.  I know she will love the time with them.  Visitors (who are healthy and have had flu shots!) make our day so much brighter!! 




Tuesday, December 27, 2016

Rehab day 1

We made it to KKI today around 1:30.  Transport was good and Abby even fell asleep for most of it!   The afternoon was not nearly as chaotic as last time, so she handled it well.  

Matt and Caleb brought our stuff, and then my parents came in the evening to visit!  They hadn't seen Abby since surgery, so she was happy to see them.  Mom even brought a button down shirt  that actually fits Abby! It's nice to have another option.  

 It's tight quarters around here and I'm pretty sandwiched in.  It's doing wonders for my claustrophobia! 😏😉

Therapy starts tomorrow, and then the real fun begins! 😃

Living With a Pinless Halo: walking

Since Abby is in a very rigid head and trunk brace, she is unable to move her head or bend anything above the waist.  This makes walking rather tricky, since she can't survey her environment. Anything on the floor is a potential hazard, which means we have to be very careful about clearing the way for her.  Matt and I have talked about some more changes that need to be made at our house, and we have begun talking to Caleb about the necessity  of him picking up his toys and shoes.  

We haven't attempted changes in terrain yet, but we know that it will be a challenge when she can't see it.  We are teaching her how to feel with her feet as a way to prepare her for this.  

School will be a real challenge, since we have no control over that environment.  But thankfully, her wonderful one-on-one will be watching out for her.  Still, there's only so much she can control in a class of unpredictable kindergarteners.  

It will be interesting to see how the coming weeks unfold with this!

Monday, December 26, 2016

Post op day 7

What kind of physical therapist lets you shoot animals around the unit with Nerf darts?!?!  Our awesome Ms. Jo!  She always makes PT so fun. It was a very intentional game to get Abby to learn how to survey her environment with the halo on.  When she shot the animal, she had to feel it with her foot and kick it over to me--all quite challenging when you can't see it! It was lots of fun and she didn't even feel like she was working.  

We also played Headbanz as a family today, which was fun.  Caleb's first question was, "Am I a mystical creature?" Which made us all laugh.  That's just so Caleb!

Abby's wonderful teacher FaceTimed with her this evening, which brought smiles.  She is seriously the best!!  

While we are hoping to transfer to rehab tomorrow, there are a lot of insurance hoops still to jump through because of the holiday.  It may not be until Wednesday.  Our insurance doesn't have a rehab benefit, but it has to be submitted and denied before it can be submitted to Medicaid. None of that can happen until tomorrow because of the holiday.  

Tonight, I'm taking one last opportunity to get a decent night's sleep before heading to rehab. Caleb and I are back at RMH tonight with big plans to watch the second Harry Potter movie. :)

Sunday, December 25, 2016

Post Op Day 6 and Merry Christmas!

We enjoyed our day today as we celebrated Christmas, even though we were sad to be away from family.  Thanks to FaceTime, we were able to spend time together anyway!  

 

Matt and Caleb come over early this morning with the gifts that Santa brought to RMH. The kids were so excited about their gifts!  We only brought a few of the gifts from us here because of space concerns, but that just means Christmas will last that much longer!
Caleb's favorite gift from Santa was a Lego Mars set that shoots alien pods out through tubes.   He also got several other Lego sets, the complete set of Harry Potter movies, and the new Fantastic Beasts book.  

 
Abby's favorite gift from Santa was a bike for her American Girl dolls.  It was all she talked about and Santa did not disappoint!  She also got several Lego sets, a dancing ballerina Barbie, and a book that is all about American Girl dolls. 

We let her pick a few small things to keep here in her room to play with, and Matt took the rest to RMH.  It is amazing how quickly the room can be overtaken by stuff!!  

The rest of the day, we relaxed and played together as a family.  We watched A Christmas Story, painted stained glass ornaments, FaceTimed with family, went to breakfast and dinner together in the cafeteria, and went for a few walks.  While Abby took a nap, Matt, Caleb, and I played War.  We also got to meet 4 therapy dogs today!!

 

 

 

It was a peaceful day without therapies, tests, or doctors' visits.  I'm sure we will be back at it tomorrow, but it was nice to take a break. 

From our family to yours, Merry Christmas!

 
 

Living With a Pinless Halo: Clothing

Dressing is rather complicated in a pinless halo, we have discovered!  We already knew anything over the head was out.  The halo adds several inches to the circumference and it would make the neck of the shirt huge.  Abby has been in a brace before and she was able to wear button down shirts one size bigger than usual.  It wasn't too much of a challenge.  

Now, the metal bar in the back of the halo connecting the head to the brace sticks out an extra 2 inches, making wearing button down shirts pretty much impossible!  I went up 2 sizes and she wasn't even close.  Going up 3 sizes would cause her to just swim in it length-wise.  

On a whim, I threw in an Adidas jacket when I was packing her for this stay.  It is stretchy without a hood and is the only thing we have here that works!  Even other hooded sweatshirts I brought aren't stretchy enough to fit.  I may be able to go up a size on those, but we don't have any here right now.  Plus, I think a hood would just add even more bulk behind her head and would be uncomfortable.  

 I have one more Adidas jacket at home and ordered several others!  It is a zip-up track jacket that has quite a bit of give in it, and we can zip up the front most of the way up. She feels comfortable in it and it fits!

I also had an idea that a knit poncho might work. (Not the kind you wear to keep dry--the cute kind!)  They tend to have wider head holes and just lay on top of everything.  I figured I might give it a shot, but I can't find anything that isn't ridiculously expensive.  I'm going to keep an eye out.

She will hopefully be out of this before the weather gets warm, but it is basically impossible to find short sleeved zip-up shirts!  We are just going to hope that it won't be an issue.

As far as pants go, I had already learned with her last brace that leggings were the easiest.  Regular pants got pushed down by the brace and weren't comfortable for her to wear.  Lucky for her, she has plenty of Lularoe leggings!  😃. I didn't even bother packing any regular pants.

Because Abby is still very unsteady on her feet and is struggling to adjust to this new weight on her upper body, she is only wearing sturdy tennis shoes right now.  She loves her boots, but they just aren't safe right now.  Safety > fashion!

Saturday, December 24, 2016

Post op Day 5

We had another good day today.  Abby is walking more--still needing a hand, but improving every time!  She was in a great mood today and loved having Caleb with her.  She pretty much wants him right by her side st all times!

They each got to open a present this evening, as is our tradition.  Abby got some American girl Lego-type figures (they are AG brand) with accessories.  She was thrilled, of course!  Caleb got a Star Wars Death Star planetarium that projects either the Earth's solar system on the wall, or the Star Wars solar system!  He was pretty excited, but it requires a bit more set up than we can do here so he has to wait until they go home.

Abby was also all about the crafts tonight!  She made a winter charm bracelet, a penguin, a jungle bell wreath, and a nativity scene (sent by American Heritage Girls!)



 

Tonight, we continued our tradition of listening to Paw Paw read "The Night Before Christmas" before bed by listening to his recorded book over FaceTime with the Bevard family!  Modern technology is so great!

 

Caleb and Matt are back at RMH, decorating the third floor rooms with snowflakes!  Thank you so much to all who have participated.  It has been so fun spreading joy and the families just love them.  

While we missed our church's Christmas Eve service, we also know that the birth of Christ can be celebrated anywhere.  We can be just as thankful for God sending His son to for in our place here as we can at home.   The situation is not ideal, but we are together and happy.  It will be a Christmas to remember!  ❄️🎄✝️☃️

Friday, December 23, 2016

Post op day 4

Today was lightyears better!!!  Abby was happy, enjoyed playing with Caleb, did well in pt and ot, and smiled and laughed multiple times!!

She had a nerve conduction test that wasn't very fun, but she made it through and did well.  We had a nice day!

Tonight I'm back at RMH to enjoy some time with my boy while Matt stays with Abby.  I'm looking forward to a good night's sleep! :)

Thursday, December 22, 2016

Post op day 3

Warning:  this is not a happy, upbeat post.  Today was pretty rough and I'm gonna tell it like it is.  

It's no secret that Abby has a difficult airway. It complicates every surgery and can make a simple cold blow up into a respiratory emergency. (Hence why I'm so concerned about germs and flu shots!!)

Today though, the airway, halo, and swelling worked in tandem to cause a miriad of problems.  

Abby was supposed to have an MRI under general anesthesia today.  The anesthesia resident who "examined" her yesterday didn't check how far her mouth could open in the halo (like a few millimeters!).  He also didn't report about the halo.  So when the attending anesthesiologist came to see her in pre-op, she had no idea about any of that!

First she said the brace had to come off.  I shot that down quickly, of course!  Then there was a whole issue of the MRI compatibility of the halo, which had already been determined by ortho.  I'm not sure why they didn't believe them!  I suggested nasal fiber optic intubation, and she considered that but still felt it was risky with Abby being in the halo.  The swelling around her face is also a concern, since that could also mean her airway is more swollen than it already was on Monday.  The nurse asked about sedation, but I already knew that difficult airways can't do sedation.  It's intubation or nothing.

So....they decided to go with NO anesthesia at all.  I totally got that it was for Abby's safety, but we were not prepared for that!  My claustrophobia flared up just thinking about it, and I knew I couldn't project that onto her.  I didn't trust myself to explain it well.  I asked for Child Life to come in and help explain, since Abby hadn't been prepped for that at all.  They showed a cartoon video explaining it and she didn't make it halfway through before she started crying.  They didn't even get to the doll and tiny MRI machine!!   I told them we did not have a chance of doing it unless I was in the room with her.  That's not typically allowed, but I also knew how badly they wanted to do this MRI.  They finally agreed to let me in.  

Of course, at this point it was several hours after her scheduled time.  (She hadn't had anything to eat or drink since Midnight, and it was 3:30!) The anesthesiologist also informed me that she should have left an hour ago (kinda rubbed me the wrong way, considering this was her department's fault to begin with!!!) and so they ended up sending Abby back to her room to come back later tonight. 

 By this point, she was just distraught.  I held her and she absolutely lost it.  All of the stress and frustration of the last few days came crashing down and she just hit her breaking point.  

Seeing her like that broke my heart and I shed some tears too.  Her nurse came in and felt awful seeing us like that!  Abby finally fell asleep and I kept the lights off and just let her sleep off her anxiety.

We ended up going back down at 6.  She was very upset during the ride, but did ok on the table.  This time We had a wonderful anesthesiologist who we have had before.  She wasn't doing any sedation, but was present the entire time in case a problem arose.  She was really good with Abby too.  

Abby started out well and seemed to be comfortable as long as I held her foot.  After an hour or so, she was over it.  Her back and ribs hurt (she can never be that still flat on her back for that long!) and she started moving around more and getting upset.  I got permission to go up by her head so she could hear me.  I sang loudly over the noise of the MRI machine and tried to calm her down.  She sobbed uncontrollably for the last 10 minutes.  Unfortunately, her movement resulted in needing to redo the last set of images.  I let them know she would need a break if we had any chance of getting them.  They pulled her out and let her sit up for a few minutes.  That seemed to be enough to make it through the last section, and she persevered.   


I already thought that I had the bravest girl in the world, but it was confirmed today!  She conquered her fears and was so awesome!  (Did I mention that I freaked out during my OPEN MRI and almost couldn't do it?!?!). She got a bear, a coloring book, and crayons from the MRI team.  She also had two great presents waiting for her in her room:  Caleb and Daddy!  We let each of them open a Christmas present early in celebration of their various achievements. :)

She has been so sad and just not herself.  I can only imagine how much is going through her head. She hardly talks and mostly stares listlessly into space.  I can't get her to eat or play anything.  Even the sight of Caleb didn't result in the reaction we had hoped.  He was a little disappointed, but I explained that she has been through a lot and it will just take some time.  They are here through Christmas, so I'm hoping having him around will help.  

This kind of experience is tough enough for an adult, but just infathomable for a six year old.  This sweet baby has been through so much and she really just needs a break.  We would appreciate your prayers as she goes through this rough time of adjustment.



Our boy!

So very proud of Caleb!  It has been a big week for him!  On Monday, he found out that he was awarded the nominee for the Carson Scholarship!  He will be his school's representative and will continue with the application process to hopefully earn the scholarship.  His cousin Sara won for her school as well, so we are hoping this will be a family thing!  

The essay was, "Who is your hero?" And Caleb wrote a beautiful essay about Abby.  I will share it when I can access it from our home computer!  He did such a nice job and his love for his sister is just so evident in his words.  The essay alone made me proud, but I'm excited that others recognize how great he is as well!

His other exciting news is that he was cast as the role of Grimsby in his school's production of The Little Mermaid!   This is a great role with some good lines and lots of singing.  He has worked so hard for this audition and we are thrilled for him!  It is a great part.  

I know Abby often gets the spotlight out of necessity, but we are so very proud of Caleb and the young man he is becoming.  He has really come into his own this year!  Love him to pieces!!

Living With a Pinless Halo: The First Few Days

At the encouragement of my mom and after realizing there's like NOTHING on the internet about a pinless halo, I have decided to do a blog series about living with a pinless halo.  I'm hoping that sharing our experience might help out others who find themselves facing a pinless halo as well. 

Abby is in a pinless halo for at least 3 months while her body heals from a limited spinal fusion using Shilla rods.  The Shilla was placed previously in the Thoracic, but needed to be revised and extended up higher into the cervical spine to control her kyphosis.

We are currently day 3 into this 3 month+ journey.  She was casted for the halo a few days before the surgery, which was a two hour process that she handled remarkably well!  She got to pick from probably 20 different prints for her brace, which made her happy.  






The pinless halo cannot be removed by anyone but the brace creator (ours is NOPCO), and it is extremely tight against her body.  The brace itself is more or less a scoliosis brace with some sheepskin underneath for softness.  It also extends up the back of her neck and onto the back of her head.  She wears a brace shirt under it.  The pinless halo goes around her head and around her jaw.  Her neck is completely immobilized and she is unable to move her head in any direction.  She has managed to learn how to nod and shake her head using the slightest wiggle (it's not even a movement!)  





As far as pain (besides the surgical pain), most of what Abby complains about is that her jaw/teeth hurt.  The brace is very tight through there and pushes everything forward.  One resident described it as basically forcing TMJ.  Having had that in my life, I can say it's not pleasant!  Ice packs against her cheeks have helped a lot.  She sleeps with one across her face, believe it or not!

Since the halo cannot be removed, we are learning how to be creative with cleaning her.  She obviously can't shower or wash her hair, so I have been using the no-rinse shampoo from the hospital to wash her hair.  I haven't been impressed with that at all.  It's leaving her hair very clumpy and greasy.  I am going to try baby wash with a wet wash cloth tomorrow to see if that works better.  We have also found that two tongue depressors taped together with a baby wipe around them allow you to slide up under the brace shirt and at least somewhat wipe her chest and back.  The hospital has nice cleaning cloths, but they have to be specially ordered for us. 

Abby has a gtube, so a hole was cut out in the brace for us to be able to hook up her connector.  It's a little tight getting it connected, so we are leaving the connector attached as much as possible.  We have lots of button-down shirts for her to wear, but so far she doesn't want anything on over the brace!  It is also still a little tricky with the IV meds, pulse ox, and monitor cords coming out from every direction.  I'm hoping to start figuring out clothes soon, since it appears she won't be able to button over top of the bar.  We should at least be able to get it partially buttoned. 

Every day gets a little bit better!  It's only day 3 and I've already seen tremendous improvements regarding her tolerance and attitude toward the brace.



Wednesday, December 21, 2016

Post Op Day 2

Today was just all over the place!  Abby started out the day by doing a nice job in PT.  She walked 6 feet, stood for 3 minutes two different times, and did lots of reaching with both hands when doing an ice cream cone sticker activity.  She was completely wiped out after that and slept for several hours, only waking briefly when Santa came to visit her room!  



I noticed her feeling hot and she had had a low grade temperature all day yesterday while on around the clock Tylenol.  The nurse took her temperature and it was 103.8!!  Eek!  No wonder she was so out of it.  Her oxygen levels kept dropping while awake, so she needed to be on a liter of oxygen to even keep them in the 90s.  

She was showing no other symptoms, but they decided to get an X-ray since we needed scoli films anyway.  It was clear.  Blood cultures were taken from her picc line to check that for infection.  Her regular blood work showed her white blood cell count was off, so infectious disease ordered repeats for tomorrow, along with a few other checks.  

Abby is getting an MRI tomorrow for the spinal cord injury.  Get this--all of the metal she has in and on her body is MRI comparable.  Guess what wasn't?  The silver Brace tee and the bandage she had on her incision!  They both contain silver because it's an sntimicrobial agent!  So both of those had to be changed in order for her to be MRI ready.  That is a major ordeal that took 4 people to do in order to keep her neck and back safe.  While they were changing the bandage, I got a look at her back.  I don't love how the incision looks, as there's still one part that is goopy and nasty.  But we are going to wait and see what happens.

After X-rays, Abby came back in a great mood and ready to play!  She was laughing, talking, and even being sassy!  I loved it!!  It was such a 180 from earlier in the day.

She's now asleep and the fever is creeping back up.  We are watching it for the moment, since we don't want to mask anything by giving her meds right away.  

Like I said--a weird day!  But I feel like she is turning a corner--at least in her demeanor and happiness!  I'm certain that she will be thrilled when her brother and dad get here tomorrow evening!!

And now for the AMAZING news!!!  Check this out!!!  The left was Abby at pre-op last Thursday. The right is today.  Look at that correction!!!  God is so good.  This X-ray is beautiful!!

 

Tuesday, December 20, 2016

Post op day 1 evening

Today was such a whirlwind!!  We saw a TON of people and it was just a steady stream.  I feel we are truly headed in the right direction now and have gotten more done regarding Abby's nerve issues in a day than we have in 3 months!  

The rehab doctor who evaluated Abby is great.  She did her fellowship at Kennedy and said their spinal cord program is where Abby needs to be.  She said she has never seen anything like it.  She is going to call and fill them in on Abby to get the ball rolling.  We are so thankful for that "God thing!"

We saw urology and they agreed with everyone's analysis that the bladder issues are from the spinal cord injury. The urodynamic testing they recommend has to be scheduled months in advance at CHOP, but the rehab doctor is hopeful that KKI can do it.  The spinal cord program does them all of the time there.  This will determine the source of her bladder issues.  The rehab doctor also ordered an MRI, which will be done while she is inpatient here at CHOP. 

Pt and ot both came, so Abby has been in her chair 2x today.  Both times it totally wiped her out and caused her to sleep for several hours each.  I'm glad though, because She needed it.  Do you see the hint of a smile?!?!  They didn't push too hard, since it was just Day 1.  Tomorrow they are hoping to do a little walking.

 

She's still on lots of pain meds, including a pain pump.  We pretty much push the button whenever we move her.  Any move is very painful.

She seems to like ice packs on her face.  She's been complaining of her teeth and jaw hurting, and this seems to help. Opening her mouth is very, very hard.  It took several attempts to get a toothbrush in there, and I couldn't get the backs of her teeth.  So that means chewing is pretty much out of the question.  She has eaten 6 tiny bites of applesauce today. 😕. I am hoping I might be able to get more in at dinner, but we will see.

If you've been reading my blog long, you know that the orthopedic residents are...special. When I asked about how to attempt to clean Abby in the halo, the resident said, "Hygiene isn't a priority."  Her nurse replied, "Well it is to me!"  She helped me use a tongue depressor to get a wipe under the brace to clean her up.  Tomorrow I'm going to try taping two together.  I get that this brace is important and we can't remove it, but she will reek after 3 months if we don't at least attempt to clean her up with it on!!

One bright spot of Abby's day was when Caleb sent her a HUGE unicorn balloon!  She loved it so much and didn't even let go while sleeping!

 

Every day gets a little bit better, so here's what was better today:

*. we had a very productive day with lots of doctors who are all focused on addressing Abby's mobility and nerve issues.  

*. Abby tolerated the chair 2x today.

*. She got some restful sleep without being agitated and in pain.

*. Her neck positioning is noticeably better with the halo.

*. We had a great nurse who we have had many times and who really loves Abby.

Post-op day 1

Abby did well last night breathing wise.  She is miserable in the brace and everything hurts.  The pain button got pushed a lot!  (We requested a pain pump this time, since they didn't give her one last time.  It is definitely helping!)

They moved a new baby in last night on droplet contact precautions.  The family was hacking away and the baby had a high fever, respiratory issues, vomiting, and diarrhea.  They said the whole family had it!  That is all Abby needs!  Plus, everyone was walking through Abby's side after being over there in their isolation gowns touching stuff on Abby's side.  It was totally grossing me out.  I could almost see the germs floating through the air and sticking to things!

Matt and I pitched a fit and they moved us to a different room.  I think they decided it wasn't worth the hassle!  That was around 11:30 pm.  I honestly don't understand why they would put Abby with a kid like that in the first place!  It is just not safe for her to catch something like that right now!

At 3 am they said they needed to move her out of the PICU to make room because they were full.  They had to take her arterial line out before they did.  They did that and then she promptly puked all over.  Since she can't lean over a bucket, it was pretty much everywhere.  We got her cleaned up and I figured out a better option for when it happens again.  

We finally moved to the 4th floor at 5:30.  She got settled in a shared room and then they said they had a private room that just opened up!!  I was quite happy to move that time!  We are in a private room now and she got about 1 1/2 hours of sleep here.  I'm loving the quiet!

I'm hoping today we can start to figure out some of the practical things about living with the halo.  She is going to hate having to start moving around, but it needs to be done.  

Monday, December 19, 2016

Out of surgery

Abby is out of surgery and in the PICU.  Her pain seems to be well managed and she is pretty calm.  She can't tolerate sitting up yet, but she wants to watch cartoons.  Matt is holding the iPad over her head for her!

 

The brace is connected to the halo in the front and the back by a bar.  The straps are pretty tight, so she really can't move her head at all.  Her throat is sore from the intubation, so she isn't talking.  We are communicating through sign language and yes/no cards for now!

The surgery went well and he was able to switch out everything he needed to.  Several of the screws were loose and everything was close to the surface, so hopefully this will work better.  

The nerve specialist monitoring her function did notice almost immediately that her nerve functioning had changed since the last surgery and was affecting her legs (as we have seen!). Unfortunately, that didn't improve after he moved the hardware.  This also explains the bladder issues.  It appears to be permanent, so it's officially a spinal chord injury and allows us to get access to a great outpatient program at Kennedy Krieger in addition to the inpatient rehab.  We are hopeful that they can help improve her functioning.  

The rest of my night will most likely be attending to my girl.  Thanks for praying!

12:30 surgery update

Everything is going as planned!  He is able to do what he wanted to do, which is to leave the lower section that is fused and replace and extend the upper section into the cervical spine.  He is also switching out the screws and replacing them with hooks.  

We were told 8 hours of actually surgical time, which officially started at 9:50.  So we are probably looking at another 5 1/2 hours of surgery.  We are hanging in there!

10:45 surgery update

We just found out that Dr. Cahill is able to do the surgery!!! Thank you Lord!!!!  We are so thankful that the rods didn't have to be taken out!!!

I never thought I'd be so happy for a 9 hour surgery!!!

9:30 surgery update

Surgery has now officially started.  We are hoping to know in about an hour whether or not Dr. Cahill will be able to perform the surgery or remove the rods.  Please pray that the surgery can go as planned!!

8:20 Surgery update

Abby went back about 8:00.  The anesthesiologist played Rudolph for her and we were all singing along.  She went to sleep fairly calmly.  

Dr. Cahill is "cautiously optimistic."  At this point, I'll take any bit of positive news! :)

We are in for a long day, so I'll post updates as I get them.  Thanks for all of the purple pics already!  Abby enjoyed looking at them in pre-op.

Saturday, December 17, 2016

Snow globes, parties, and tears

 

Abby got this sweet snow globe ornament today from Make a Wish!  It's flat on the back with a magnet on the back, so we can use it all year.  Such a fun surprise!

We enjoyed going to my family Christmas party today.  Since we weren't sure we would be able to be there, we were especially glad to go!  The kids had fun playing with their cousins and they all seemed to enjoy their gifts.  The girls were all given JOY shirts by my aunt in support of Abby, which were really cute! We are so grateful for all of the love and support my family gives us!  They are the best!

Tonight ended a bit teary when Caleb broke down while he was praying before bed.  We had suspected that there was a lot going on in his head, but he hadn't expressed it until then.  So the four of us had a little hug fest and then I climbed in bed with Caleb for a while and let him ask all of the questions he wanted.  He often does that, but understands that it's not good to do in front of Abby.  So he asked all of his questions, including some tough ones, and I did my best to answer them in a way he could understand.  When we had discussed everything, he sighed and said, "I feel so much better!"  He is so much like me in the way he needs information in order to feel secure.  There's anxiety in the unknown.  Man, I love his heart for his sister.  He is such a great kid.

So we will head back up to Philly tomorrow after church and then we have to be at CHOP at 6 am on Monday morning.  We appreciate your continued prayers!

Friday, December 16, 2016

PICC is in--and a surgery update

Abby's PICC line is in and we are on our way home! I did the PICC training while she was getting it placed so that we wouldn't have to wait on that in order to leave.  

Now that we have had more time to digest all of the information given to us yesterday, I wanted to share a little more about the actual surgery.  Dr. Cahill will be fusing 4 or 5 more vertebrae, this time going into her cervical spine.  She will have a total of 8 or 9 vertebrae fused now.  If this doesn't work, he will have to fuse her entire neck, which would cause her very limited neck rotation.  We are hoping this works!!!

During the surgery, she will be placed in traction using a halo-like device on her skull.  This is to get her in the best position possible for the fusion and will be removed before she leaves the OR.  

 

While she is in her halo in the coming months during her recovery, she won't be able to move her head or neck at all.  This will make walking challenging because she can only look straight ahead.  This is similar to the brace last time, but she had some ability to move her head.  There will be absolutely no movement with this.  Any change in terrain, any toys on the floor, any rough, wet, or icy patches could all be potential hazards that could make her fall.  For this reason, she will need someone devoted strictly to her at all times--usually me, Matt, or her one-on-one at school, Cheryl.  This will make going to church or any social events virtually impossible.  She will also be in her wheelchair much more when out in public to minimize Fall risk.  

It's still a lot to take in, but we will deal with it and try to make the best of the situation.  Knowing how much she is loved by so many warms our hearts!  Thank you for your love and prayers!




Thursday, December 15, 2016

Pre-Op Day

Today ended up being a lot more than we bargained for.  After getting to our hotel late last night, we took it easy this morning and got to the hospital for her 11:45 appointment.  After X-rays, we saw Dr. Cahill, who took one look at her back and was very concerned.  He had not been made aware of much of what we had been telling and sending the nurse practitioners.  There's a lot of blame that could be made, but that's not really productive right now.  At this point, I just want to make sure that doesn't happen again.  The important thing is fixing the problems from here on out.

He's not sure what he will see when he gets in there.  If bacteria is covering the rod like he suspects, he may have to remove the rods until her body heals.  If that happens, she will be in the pinless halo for three months until she can have the big surgery to reinsert the rods.  Then she will be in the halo for another 3+ months after. If he can do the surgery now, he will basically redo everything and start over.  She will come out of surgery in the pinless halo and will wear it for 3+ months.  So the halo is a given...just not sure under what circumstances and for how long.  It's going to be pretty miserable for her, because she can't take it off at any time for any circumstances.  There's nothing more than a blind wipe down as far as a bath goes, and I can't wash her hair because the halo can't get wet.  We will use dry shampoo, but I'm not sure how well that will clean it long term!  So I apologize in advance for my girl's appearance.  It is what it is.  

She had to get a plaster mold done for her halo, and it took forever.  She had to lie perfectly still, First on her back, and then on her stomach.  It was probably an hour and a half process total.  We didn't even know she needed to do this at all, So there was no prepping her. I thought she would be absolutely miserable, but she did so great!  She watched cartoons and sang along to Shrek.  I was so proud of her.  She earned the Barbie she got tonight, for sure!




We ended the appointments by being 2 hours late to our anesthesia appointment, but thankfully they understood that the casting took forever!  This was the easiest appointment of the day.

It was a whole lot to take in and I held back some tears as I realized Abby's walking could become very, very limited if this kyphosis isn't under control.  Determined to improve this difficult day, we braved the traffic and went to Macy's for a lights and music show.  It was narrated by Julie Andrews and Abby loved it!  It was worth the crowds to end the day on a good note.

 

 

 

 

Guys, I seriously have the bravest, toughest little girl who has endured more than anyone should in their lifetime, but she does it all with such joy and grace.  I'm in awe of her.  I think we can all learn a little about choosing joy from Miss Abby Joy.  I definitely did today!  In the words of Caleb, "If Abby can have a positive attitude and choose joy with all she goes through, we can with all of our lesser things."


Tuesday, December 13, 2016

Heading to CHOP


We head to CHOP tomorrow after school for pre-op appointments on Thursday and a PICC line placement on Friday.  Although they have in the past required that Abby be admitted after PICC placement, this time they said we could go home until her surgery on Monday.  Yay!!  We are thrilled to spend a few more days with Caleb and be able to attend our extended family party.

The main event is next Monday, the 19th.  As always, Abby loves to see pictures of people wearing their purple!  It makes us smile while we are waiting for her during surgery too.  :)  Make sure you hashtag it #purpleforabby so that we can find the pictures easily!

Friday, December 9, 2016

Friday Funny

I recently got my engagement ring repaired and it was returned to me in a ring box.  Matt walked in on Caleb down on one knee with the ring box opened, proposing to...Chloe.  😁

Her response?  She just got up and walked away.

That boy is hysterical!!

Thursday, December 8, 2016

Thanks for Praying!

A strongly worded email and many prayers from friends and family did the trick!  Dr. Cahill called me this afternoon to apologize for all of the miscommunication and trouble.  He offered us the 19th for surgery, which I eagerly took!  11 days...we can do 11 days.

He talked with me at length about what the surgery would entail.  He is replacing the screws with hooks, and then fusing more vertebrae.  Sadly, that means more final height lost...but it needs to be done.  Basically, he is redoing the Shilla and we can expect that the recovery will be the same.  We are fully expecting that she will go to rehab again.  (Have I mentioned that we are still appealing the transport bill from her last trip to rehab?)

It's going to be another tough surgery, but we have a plan.  She will be in another brace that is actually a pinless halo.  I'm sure she will love it even more than the last one.  :)

We do appreciate your love and prayers.  I'm just thankful we have gotten through this.



Wednesday, December 7, 2016

More Bad News

I emailed the nurse practitioner last night to see if Abby's surgery could be moved up because of all of the issues.  She wrote back that there was no room in the schedule and she was actually going to have to be BUMPED until January 5th.  Dr. Cahill wants her to be his only case that day (last time, it took 9 1/2 hours to do this same surgery). There are 3 other cases on the 22nd, so Abby is being bumped.  

I called the nurse practitioner after I calmed down and was able to speak calmly.  I voiced my concerns about waiting 2 MORE weeks when I was already worried about waiting 2 weeks!  I said if she popped 3 screws in one week, what would happen in another month?!?!?  She was going to talk to Dr. Cahill and see what she could do.  She was supposed to call me back today, but she didn't.  

I've cried so much today.  I am so worried something is going to happen before she has the surgery.  I just don't feel right about waiting another month.  

Thanks for your support, everyone.  I'm so sad and frustrated tonight.  Tomorrow is another day and I will get back up again and fight for my girl.  That's what I do!

Tuesday, December 6, 2016

Revision

As I've mentioned a lot recently, Abby has been in a lot of pain and had difficulty with numbness in her legs since her September surgery.  In the last week or so, we have noticed and felt little points sticking up in her back--like the points of screws.  I let CHOP know, but the nurse practitioner said to let her know if we were able to see them. (Isn't feeling them bad enough?!)  After a lot of back and forth and frustration, I finally took pictures last night, now that they are visible, and sent them to the NP.  She took them to Dr. Cahill and he decided Abby needs a revision of her Shilla.

This is a much bigger surgery than we were planning for the 22nd, because it was originally just supposed to be an expansion. We aren't exactly sure what it will entail (and neither does he, until he gets in there), but we know that it will be much more involved and more painful.  Translation:  we will be at CHOP for Christmas.

We'd already prepped Abby for this with the original surgery, just in case.  She'd already thought she would be there for Christmas anyway.  I broke the news to Caleb tonight, but promised that we would all be together for Christmas no matter what.  He seemed alright with that.  Since Santa came early (he brought a new computer and desk!), we don't have to worry about him finding Abby's room. :)  We will bring a few presents with us for the kids to open, but the more we bring up there, the more we bring home!  I will choose strategically!  

We would appreciate your prayers as we face the next few weeks.  Pray that Abby's pain is managed and that the surgery corrects the issues she has been having.  Thanks, friends!

Monday, December 5, 2016

A HUGE Step in Recovery!

On Thursday, Abby will be 3 months post-op from this awful Shilla surgery.  She has really been through the ringer with this one:  between the infection, the pain, the numbness, and the bladder issues, we were really just praying for a glimmer of hope.

You see, 3 months marks the time when our surgeon said her recovery would be about as good as it is going to get.  Given that she still struggles to walk further than from the parking lot to the front door without resting, we were really hoping that she would have progressed farther than this.  Don't even get me started about the numbness in her legs...

But tonight, God gave us that glimmer.  Abby decided that she wanted to stand up on her own without holding onto someone or something to support her.  After several attempts and a whole lot of willpower, she did it!!!

And yes, we both cried.  :)

THIS IS HUGE!!

Matt and I both feared that she may never be able to stand up on her own again.  It's such a simple thing that most everyone takes for granted, but when you have to crawl across the floor to use the wall or a table so that you can stand up...it's a big deal.  And when you're as independent and sassy as this little girl, it's an even bigger deal!

Abby was thrilled with herself and laughed and laughed, giddy that she actually did it.  This girl has more determination in her little six year old body than most adults I know.

There's a lot that isn't going well right now, but this glimmer was exactly what I needed to keep pushing through and choosing joy.

Sunday, December 4, 2016

Acting Debut

Tonight, Caleb and Abby performed in their first official musical.  Theater was an important part of my life growing up, and Matt and I still really love going to see shows.  I love being able to share this with my kids now!

Caleb was thrilled to have a great speaking part in the play.  His character is a Star Wars lover who turns every line into something from one of the movies....type casting?!?!  He has worked so hard and did a really great job!

Abby was one of the little angels and did a great job singing and sparkling on stage.  She learned every line and every word to every song (thanks to having the entire musical on CD so that Caleb could practice with it!), so it was pretty cute to watch her mouthing the lines along with the different characters.  When she wasn't on stage, she was quietly cheering Caleb on and proclaiming that her brother was doing a great job!

My boy was a bit glum after the show was over because he wanted to do it again!  He said he loved bonding with the cast and really had a great time.  The 7 leads spent a lot of time together running lines, and I think he really enjoyed being a part of a "team"!  I told him that I was always sad after a show was over, no matter how many times I did it.

Thank you to all of you who came to see the kids perform!  They loved that you were all there!

I will share pictures when I get them.  I was helping with 4s and 5s and my 3rd and 4th grade class, so there was too much going on for me to take pictures!  My sister took lots, so I'll post them soon.

Saturday, December 3, 2016

Back to Reality

After our incredible night on Thursday, we spent the night at RMH so that we would be close for Abby's appointments the next day.  She had a feeding appointment, a blood draw, and a urology appointment.

The feeding appointment went really well and her therapist was thrilled with her progress.  We hadn't seen her since before school started because of the surgeries and because I was trying to keep Abby in school as much as possible.  She totally understands and supports that, so we will just schedule appointments when we will already be in Baltimore for others.  Abby is eating so well now (thanks in part to her awesome one-on-one at school, who we adore!!), and her therapist actually went as far as to say that she is more or less a typical eater!!  That is music to my ears!  Praise God for that, because there were days when I never thought she would be here.  For a girl who didn't start eating or drinking anything for nutrition by mouth until she was 2 1/2, she sure is rocking and rolling now!  

The blood draw is never fun, and this one was no exception.  The phlebotomist was really good and used hot packs like I asked and stuck her in her hands like I recommended.  (I really appreciate when they listen to me!  I know things!!)  The stick was super easy, but her blood wouldn't run enough.  They had 3 tubes to fill and the blood stopped after just one.  Sadly, they had to stick her again in her other hand.  Thankfully, she got enough with that and the torture was over...but not before Abby started crying for Chloe.  :(

We grabbed lunch before her final appointment of the day, which was urology.  This was a specialty she had thankfully never needed, but she's had some sudden, frequent issues with her bladder that are completely unlike her.  We called CHOP with concerns about nerve damage affecting some things, and they agreed that we needed to get it checked out. It was no small miracle that I called last Monday and got an appointment for that very Friday!!  God had His hand in that phone call, for sure.

After sharing her history with the urologist and discussing the nerve pain and numbness in her legs, he agreed that this sounds like it is related to a spinal cord injury (which is a term CHOP is reluctant to use, but we have thought for quite some time).  He is running a few tests in the next few weeks, but he cautioned me that this very well may be a permanent condition.  If it occurs immediately following a major spinal surgery, it is more likely to be temporary than if it just suddenly appears three months later.  It can be managed, but it will most likely always be an issue.  That was a tough pill to swallow, but we have dealt with worse.  We will see what the tests show in the coming weeks. In the mean time, timers are set for bathroom breaks!

In other news, it appears that the tip of a screw has broken the skin in her back, and another is just a few skin cells away from doing it too.  We've been in contact with CHOP and are keeping a close eye on it.  Her expansion surgery is currently scheduled for the 22nd, but they will move it up if they need to.  Never a dull moment with this girl!!

Friday, December 2, 2016

An Awesome Opportunity!

Our family was so honored to represent the Ronald McDonald House of Baltimore last night at the lighting of the Washington Monument in Mount Vernon!  Along with the mayor of Baltimore and Steve Smith Sr. of the Baltimore Ravens, we lit the monument and officially kicked off the holiday season!  This is a HUGE deal in Baltimore and there were an estimated 20,000 people there last night!  Incredible!!

Abby was the "official" lighter with a magic wand that caused the monument to light up.  She loved it and proudly held her wand up high in the air!  Caleb actually got to push one of the buttons with the mayor and Steve Smith Sr. to make it happen, so he was thrilled!  

We were interviewed by two Baltimore TV stations!



 Here's one:


I can't find the other one online, but a friend taped it from her TV with her phone and shared it on my Facebook page.  :)

Abby got a light-up wand to do her magic, and the 6 year old daughter of one of the people running it heard about Abby and made her some pixie dust to help with the magic.  Of course, she loved it!!!



 What Baltimore celebration is complete without Natty Boh?!


Thank you to our wonderful friend, Sandy Pagnotti, who is the director of our Baltimore RMH.  She is so fantastic and we are grateful that she asked us to be a part of this!



The fire chief of Baltimore asked to come meet Abby :)


Reagan and Katie Rose of Mixed 106.5 were the MCs of the night, and the kids had fun being silly with them!  They did a great job of sharing Abby's story.  Reagan dramatically said, "The doctors said she would never see.  Well guess what?!  She sees!!!" And the crowd cheered.  He did that for seeing, hearing, talking, and walking, and the cheered got louder each time, then erupted when she actually walked across the stage.  They started cheering, "Abby!  Abby!  Abby!" which was surreal to me, but a little too much for her and she covered her ears.  :)  They interviewed us on the stage and we got to share about how important The Ronald McDonald House is to us.  We love any opportunity to talk about our Baltimore home!



When the big moment came, we got on stage with the major and Steve Smith Sr.  Abby's hidden, but you can see her wand!


We lit up the sky!


It was seriously one of the coolest experiences ever!  We are so grateful to the Ronald McDonald House and love to have any opportunity to spread the RMH love!