Thursday, January 19, 2017

Ready for School!

We had a meeting at Abby's school today to get her ready to go back.  She is soooooo excited and exclaimed, "I'm so happy!" when we drove in!  This girl loves school, and why wouldn't she?!  The staff has been so wonderful and all of the kids were smiling and waving to her.  It was so sweet.

I went in to talk to her class and brought a little bear with its own little homemade halo to explain it.  The kids were so sweet and I emphasized that she is the same old Abby who loves purple, princesses, Calico Critters, dancing, and singing!  I think they will be just fine with everything.

We are so very blessed to have such an awesome and supportive school.  They really bend over backwards to accommodate our girl.  We are so grateful!!

Monday, January 16, 2017

A Weekend at Home!!

I'm always so good at blogging during hosputalizations--not so good once we get home!!  I seem to hit the ground running and jump right back into things, which is stressful and taxing!  

My mom and Dad did a ton of work at the house before we came home, which was amazing!  Dad even recaulked our bathroom and it looks great!  Have I said recently that my parents are awesome?!

Matt and I had been discussing selling Abby's loft for a while because of her mobility, but we didn't want to upset her.  She knows her limits and decided she couldn't get up there safely, so that made the decision easy.  We picked out some pretty white furniture and I got to work today selling her old stuff!  I can't wait to redo her room. For right now, Abby is sleeping on the crib mattress on the floor.  Chloe thinks it's her bed!

 

On Friday evening, we finally celebrated Christmas with the 4 of us.  We even had them sit at the top of the stairs like always!

 

Some of Caleb's favorite gifts were fencing and Harry Potter tshirts, Legos, and a Star Wars clock.
 

Abby also enjoyed getting Legos, as well as some clothes and a game called Pie Face Showdown.  She thinks it is hysterical!!

 

On Sunday afternoon, my parents came down to celebrate Christmas with us.  Abby really loved her Calico Critters sets and a camper for them, while Caleb was thrilled to get an Amazon gift card (which he has already spent!) Mom also made dinner for us and it was a really nice evening!

Matt and I gave each other a year of dates, which was really fun to plan.  I had the odd months and he had the even.  Each month, we will do something fun together!  We went on our first date on Saturday to see Mama Mia at the Hippodrome (poor timing, but I bought the tickets months ago!). We look forward to going to some movies, going to a food truck show, visiting gardens, doing a paint night, watching a comedy show, and other fun things!!

It was a busy, but productive weekend.  I'm officially back to work tomorrow after my extended "vacation," so I'll have plenty to jump right into!  My mom and sister are taking turns staying with Abby this week so that I can work.


Thursday, January 12, 2017

Rehab Day 17

Today was Abby's last day of therapy!!  We will go down tomorrow to the spine team to say goodbye, but her therapies are officially done!

This statue is my favorite place at Hopkins and we visited it tonight.  Thank you Lord for all of the progress my girl has made!!

 

Next stop, HOME!!!!!

Wednesday, January 11, 2017

Rehab Day 16

 

Miss Abby got lots of compliments on her poncho today!  It's a light sweater material, so it's soft and not too warm.  It's blue, although it does look gray in the picture.  It has a hood too, which she loves!

The little lady wasn't overly cooperative in pt today, but she pulled it together for OT.  She was very happy that her roommate came back today after her surgery a few days ago.  She even made her a Welcome Back sign and a snowman ornament!  

The doctors removed Abby's bandage today and CHOP said she didn't need anything on top of it from here on out.  The incision looks great!!  I'm really happy with how it is healing.  Everything about this surgery and recovery has been so much better than the last one.  I'm so glad we didn't give up and stop pushing.  It was worth it.

I spent a lot of time today planning for her to go back to school and talking with the school staff there.  I'm going to go in and talk to her class next week so that they can ask questions and realize that she's the same old Abby!  The halo isn't quite as low profile as her last brace, so there's really no hiding it.  I'm going to demonstrate how the halo works using a floppy-necked stuffed toy.


We are both sooooo excited to go home.  Abby told Caleb, "Two more sleeps!" Which he mistook for two more weeks and almost had a heart attack.  :). The end is near!

Living With a pinless halo: washing the face

The face is probably the hardest area to care for while in the halo.  While the brace has nice sheep skin padding it, the head piece has hard, scratchy vinyl that sticks to the cheeks and jaw line.  I have to actually separate Abby's skin from the material, and it is very painful.  Several areas of her chin have bled and scanned over from being stuck too hard.  

I've learned that I need to separate the skin from the vinyl twice a day in order to keep it under control.  The one time I didn't do it in the morning, it was horrendous that night.  She hates when I do it and I sometimes need someone to hold her down, but it is so much better if I keep to the schedule.

Each time that I separate the skin, I also use a stoma powder to dry up the moisture and help the skin not to stick so much.  The brand we use is Karaya powder.  This does help. We started out without it and I see a noticeable difference since we have been using it 2x a day.  You can buy it on Amazon (you can buy anything on Amazon!!), but try to get it from the hospital if you can.

 
When I wash the face and down along the jaw line, I always go back over it with a dry cloth to get as much moisture out as possible.  Use a thin cloth (we use the paper towels the hospital gives us) so that you can really get down in the crack.  It's not fun, but it's necessary!!  Trust me!


Tuesday, January 10, 2017

Rehab days 14 and 15

I went home with Caleb last night so I could work and attempt to get a few things ready for Abby.  I didn't get too far on that, but I was at least able to get a day's work in.  This is our summative testing season and it's very busy and stressful!  

Matt stayed with Abby last night and today, which gave him a chance to learn some of her care and the therapies she will need.  I am determined for this not to be a one-woman show! 😳. Of course, coming home to see the condition of my house after I have been away for a month was a bit stressful, since I really didn't have time to work on any of it.  Matt assures me it will be up to my standards by Friday.  🤔

Abby got some one-on-one time with a therapy dog, which made her very happy!

 

She also walked down 2 flights of stairs and all the way to the Hopkins tunnel to take a picture of the dolphins, then back again and up to flights of stairs!  She is working so hard!


Caleb seemed to have a nice birthday.  I really wanted to make it special for him as best I could.  We got him a balloon and made a bunch of signs for him on Abby's door.  Abby and I set up a treasure hunt for him with clues he had to find around the hospital.  (This was great sneaky PT for Abby too!) The final treasure was a hand-painted treasure chest Abby painted and filled with coins.  She was very proud of it and Caleb did a great job of making a big deal out of it.  We got donuts for his birthday dessert, then we stopped at Wendy's for Frostys on the way home.  

He has had a hard time with this hospitalization because it's the longest we have been away since Abby was born, and it came riding in the coat tails of the long hospitalization in September.  (That one was 14 days and this one will be 26.) Plus, it came over Christmas, New Year's, and his birthday, which was tough for him.  

We still have Christmas to celebrate at home and with my family, so it's not over yet! There are many more presents to open!  If you see him over the next few days, give him a hug and let him know he's a great kid.  The end of this hospitalization is near!!!

Monday, January 9, 2017

Happy Birthday Caleb!!!

Dear Caleb,

 

Ten years old--how did that happen?!?!  I'm pretty sure the last time I checked, you were a 2 year old who loved splashing in the bath tub.

Now you're double digits, and man have you come into your own this year!  You have blossomed into such a fun, wise boy.  I love how much you enjoy school and am amazed by your vocabulary!  It must be all of those books you read!  Every time I turn around, you have a new book because you've already finished the last one.  Thank goodness for libraries!

I'm so proud of your Carson Scholar nominee. It's an honor for you to be chosen by your school, and I love the wonderful essay you wrote.  

You have also been bitten by the acting bug, much like me when I was a kid!  It was fun to watch you perform in your first musical at church.  Now that you have a great part in The Little Mermaid at school, we are all humming the songs all of the time!  I love listening to you sing! (Well, maybe not at 5:30 am...just being honest!)

Caleb, your character and love for Jesus make me so proud.  You know what's right and true, and you don't let others sway you.  You are a light in the darkness, and it's evident to those around you.  

And as far as big brothers go, you are #1!  Your sister loves you so much and pines away for you when we are away.  I love to watch you two play together.  Thank you for being her biggest cheerleader and protector.  I pity the kid who dares to tease her, because they will have you to answer to!

Buddy, I'm proud to call you my son.  Happiest of birthdays!  I love you!

Love, 
Momma

Sunday, January 8, 2017

Rehab Day 13

Sundays are free days, and we enjoyed some fun today!  We had lots of time in the therapy center, did some drawing and coloring, played Uno Attack, and celebrated her good friend's birthday!

 

This evening, my mom gave me the idea to set up a scavenger hunt for Abby.  I made up a list of things she could find around the hospital, and then she got to take pictures of the items with my phone.  It took a LOT of walking to find everything, with only 2 breaks and no whining!  She had so much fun and worked hard doing it!  Here are her items she found!


A game you have never played, a chair, something purple, something used for therapy 

 
The hand of a new person, a security dog, the outside, a dolphin, a fork, a power wheelchair, something related to winter, Santa, and birds.

It was fun, and she earned the final 2 stars she needed to earn a movie.  Now she's watching the McKenna American Girl Movie! :)

Tomorrow it's back to the grind!  But at least Caleb and Daddy will come up here for Caleb's birthday!!

Saturday, January 7, 2017

Rehab Day 12

We are quite jealous of the snow we got back home, because the final amount here was pretty disappointing.  It definitely wasn't enough to play in!

 

My sister said their final total was about 8.  It looks like the kids had fun outside in it!

It was a light therapy day with just an hour each of PT and OT.  She spent the rest of the time in the playroom enjoying the attention of the staff and playing with friends.  There's a nice group here now and it's been fun to have playmates.

Tonight was a little rough. Abby has done very well dressing in OT, but is pretty reluctant to do it with me.  We had a bit of a showdown tonight and she ended up kicking me in the jaw.  I walked out for a few minutes, got myself some ice (all of the PT is strengthening her legs quite well!), and cane back in.  She eventually got it together and did it, but it was ugly.  Unfortunately, I'm the one she often takes things out on because I'm here with her.  I often remind her that she's not mad at me, she's mad at the situation.  But...sometimes I still get kicked.  😕

Tomorrow is a therapy-free day, and the birthday of her good friend here.  We look forward to celebrating!  We got her Disney Headbanz, so I think she will like it!


 

Living With a pinless halo: hair

So since you can't wash your hair in a pinless halo, you have to get creative with cleaning products and styling!

I have tried lots and lots of different ways to clean Abby's hair.  The hospital no-rinse spray is worthless, so don't bother! You really can't use any of the shampoo caps because the halo is in the way.  I have been successful with just wetting the long part a bit with a damp cloth to tame it down. But for cleaning the hair, Morracan Oil is the best.  

 

It's definitely not cheap, but it's worth it!  I've tried many dry shampoos and none have compared to this.  I especially like that you can choose a blend for dark hair so that white stuff isn't left in it.  This is one of my biggest annoyances with dry shampoos.  

However, if Moraccan Oil isn't in your price range (my mom bought Abby a bottle!) or if you need to buy something at the grocery store, Pantene dry shampoo is pretty good.  The hair seems clean, but it does change the texture...the only way I can describe it is "crunchy."  But other than that, it's a decent cheap alternative.  You could even alternate between Morracan Oil and Pantene to make it last longer.

My mom bought some cute bobby pins and has put Abby's hair in buns several times.  They always turn out so pretty, but Abby will only let her do her hair that way. :)


 

Otherwise, I have found that a pony tail on the top of the head is the easiest thing to keep the hair out of the way.

 

Pieces of hair often fall down through the sides of the halo, so little tufts do stick out. I try my best to tuck them back up, but she gets annoyed. :)

If you have a boy with short hair, lucky you!!! Lol!

Friday, January 6, 2017

Rehab Day 11 and a change of plans

So after figuring we had a final decision about the transport issues, I called CHOP ortho to reschedule her follow-up appointment and see if they had thoughts on how we would get up there.  The NP was confused as to why KKI wasn't letting Abby transport and was adamant that she could go to school.  After talking to the surgeon, he echoed her feelings and noted the importance of quality of life and normalcy for Abby.  These were the big issues for us as well.

So...then we were kind of stuck making the decision ourselves because the doctors disagreed. After talking to her rehab doctor here today, she let me know that she fully trusted our surgeon and if he said it was okay for Abby to go to school, then it was okay.  KKI's stance is still that she can't, and we will still have to be transported by ambulance home.  Our time in the car will be limited to driving to and from school (1.5 miles!) and she will still be home the rest of the time, but getting her to school is HUGE.

I feel good about the decision, but some of the people on our team don't agree and it's a bit awkward.  I certainly don't want to put Abby in any danger, but I also think that there's a bigger picture too.  I think we made the right decision.

So....we got to tell Abby the great news!  Matt FaceTimed with us so we could tell her together and she was soooo excited!!  Here is her smiling face (and Matt's!) at the moment we told her.  

 

She still won't go back right away and won't do full days for a while, and she won't ride the bus the rest of the year.  But just knowing that she will have the routine and normalcy of school will make a huge difference in her recovery.  She needed this.  

Thank you all for your prayers!  I wouldn't have posted last night if I'd known this turn of events...but such is a day in the life of the Abby Saga!  Lol!

 She painted a cape today (purple, of course!) during PT while standing on a cushion and holding on with only one hand.  Hard work!

Thursday, January 5, 2017

Rehab Day 10 and life after rehab

We had a family meeting on Tuesday to discuss Abby's plan of care and what life will look like after rehab.  It wasn't quite what we had expected.

Abby will go home on next Friday, January 13th...by medical transport.  The halo is not transport safe, which means we should not drive her in a car.  

If you're starting to put two and two together, it also means no American Heritage Girls, no going out to dinner, no unnecessary medical appointments...and no school. 😪. She will be home-bound for quite a while.

We knew Abby would be devastated because she loves school, and it breaks my heart that her one piece of normalcy is being taken away.  We waited to tell Abby until Matt could be here and until Child Life could help us create a plan, which is why I haven't said anything on here. Child Life wrote a great little social story with photos of Abby to explain about her halo and what life will be like with it. 

She didn't quite get it at first, so we had to just put it right out there.  She cried a little, but overall handled it much better than we thought. We have been brainstorming ways that she can stay connected with her class and she has enjoyed thinking about the funny places we might do school during the day! (So far, we have come up with in the teepee, in the treehouse, on the front porch, or in her bed).  

Her amazing teacher will continue to teach her in the evenings (she is so wonderful!!!) and her equally outstanding one-on-one has promised to visit too!  We are hoping to set up some play dates with her school friends too (that are healthy and have a flu shot!)

The team here has been great about supporting Abby, and I know her school will make it work.  We are just sad for her.  She wants so badly to just be a kid.

In addition to no school, not being transport-safe means that she can't go to therapy.  So guess who will be her PT, OT, feeding therapist, and speech therapist?!?!  🖐🏻🤗. Yep, me. Now, I've got six years of experience in doing therapy.  That doesn't really scare me.  I have just always had a professional who is in charge and who tells me what to do!  I won't have that now, and it's a lot of responsibility.  The team here assures me that I will be fine and that they are just an email away.  They are training me extensively and are creating a packet to explain her therapies and next steps as she improves.  I've been picking their brains about tools to order and have filled my Amazon basket.  

In true Julie fashion, I was sent reeling over all of this information, spent a little time hiding from Abby while I cried, then put my big girl panties on and got to work.  We are figuring out how we will make this work and staying positive, because my response is projected onto Abby.  

So while this is not how we thought things would be and certainly would not have been our choice, we are thankful that:
* Abby is doing well enough to go home soon 
* She has an amazing school that cares so much about her
* Her awesome teacher will continue to work with her at home
* My wonderful family is willing to help out wherever needed 

 

Wednesday, January 4, 2017

Rehab Day 9

My girl rocked OT today!  She successfully put her leggings on and off by herself, put her shoes on, and buttoned AND unbuttoned her shirt (with tiny buttons!)!  I was so proud of her hard work!  She really worked hard.

PT was great too.  I'm learning a lot from her therapist and am looking into some new therapy tools for her.  One of them is electric muscle stimulation, which she has responded to very well here.  We are hoping insurance will cover it.  You can read an overview here:  
http://advanceaquaticpt.com/electric-stimulation/. I'm also looking for some new items to add to our home therapy center, which will be getting much more use in the coming months!!  

We are getting closer to discharge and hope to go home soon.  She is moving in the right direction!

Tuesday, January 3, 2017

Rehab Day 8

You could tell the holiday was over today, because this place was bustling!  Abby is making great progress with her therapies and was finally cleared for thin liquids today.  Eating is still rough and I'm usually lucky if I can get a couple of ounces of yogurt or pudding in her.  

It's been a long day and the hospital stay is starting to get to me, so I'm going to cut it short tonight.  Here's a picture with Abby's buddy Lucy Lu, who came to visit this evening.  

 

Monday, January 2, 2017

Rehab day 7

This was the last of our light holiday days of therapy.  Tomorrow we are back to the regular schedule!  I am hopeful that Abby will make some gains with eating and drinking so that she can progress to higher textures and thin liquids.  She did eat a whole container of applesauce for dinner, which is no small miracle!  She definitely prefers the crunchy foods, so I'm trying to give her as much as possible for snacks.  Just eat, girl!

Matt and Caleb came for one last winter break visit.  Caleb heads back to school tomorrow and his visits won't be as frequent.  It will be hard on everyone, as we were spoiled by having him here so much!  They enjoyed doing mess-free glitter crafts that Abby gave Abby. They are super cute and easy to do!  
 

Abby has made a good friend in the hospital.  This girl has a trach and vent due to paralysis from a freak infection.  She is sweet and funny, and very competitive!!  Her mom is really nice too.  The girls have a great time playing together and hang out whenever possible.  They have talked together a bit about the states and questions people ask them, and they have really bonded over their 
"Uniqueness."  It's really neat to see!

Tonight, Abby and I had some fun girl time painting nails.  She picks out her colors...all 5 of them!  😂. Pink, silver, orange, purple, and teal!

 

She has commented about how beautiful they are many times, and that is all that matters!

Sunday, January 1, 2017

Rehab Day 6

Woo hoo for a free day!!  Abby took full advantage of sleeping in and stayed in bed until 10:30!  It was so nice to just chill out!

My mom found out we weren't going to have visitors today and they decided to come up!  They're so awesome--seriously willing to drop everything and do whatever they can to help.  Matt and I are so blessed to have them.  

Nina brought her magical suitcase of toys again, filled with new types of entertainment!  She even managed to sneak in a great math game!  Then, she played beauty shop again with snowflake pins.  It turned out so pretty!

 

 

Abby said it looks like Elsa hair!

We spent lots of time in the therapy center today playing games.  There's a super sweet 8 year old girl with a trach and vent that Abby loves to play with.  She's also super competitive, which is hysterical!  

This evening, we did lots of reading practice and she watched the show that she earned by eating (she that was a tough show to earn!!).  It has been a relaxing, easy day, but it's back to the grind tomorrow!!