Life as a Leach

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...

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 wo...

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 p...

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 y...

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! 😃

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...

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...

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 ...

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. ...

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 re...

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! :)

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 t...

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...

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. ...

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 c...

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 ...

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...

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 explain...

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!

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!!!

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!!

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.

  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 d...

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 challengin...

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...

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!

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!!

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 prayer...

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 an...

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 w...

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.  ...

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! ...

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 wa...

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: http://www.wbaltv.com/article/crowd-gathers-for-annual-washington-monument-holiday-lighting-event/8457145 I can't find the other one online, but a friend taped it from her TV with her phone and shared it ...