Tuesday, May 23, 2017

Abby, sepsis, infection, chop

We met with the PICU team this morning.  We've been writing this for a while, but there have been lots of doctors and staff in here. Abby's respiratory rate has been very high, so they switched her to bipap with some additional support. 

They are also treating her for sepsis.  At this point, it is in her blood stream and affecting her respiratory system.  They are watching her very closely and she will stay in the PICU for the foreseeable future.  They are also running lots of frequent labs.  We are waiting to meet with the infectious disease team.  Abby is awake, alert, and feisty.  When Matt took a monitor lead sticker off without warning her, she yelled, you took the darn sticker off!!"  So she's sick, but still sassy.  :). 

Our girl could really use your prayers.  I've often said we live "in the woods" and are never really out of it, but this is a scary time.  It is so easy to allow our minds to go to dark places, but we are fighting to stay positive and proactive.  We are thankful for every sassy thing that comes out of Abby's mouth right now!!

Monday, May 22, 2017

Surgery update 8:30

We are with Abby in the PICU.  Everything went smoothly, but they just brought her here for closer monitoring. Dr. Cahill found infenctikn in multiple places, and the right VEPTR was eroded and infected.  Everything on the right side was removed.  The left side was infected, but still in tact.  He decided to try to keep it in, in an effort to support her spine.  It was thoroughly cleaned and may be cleaned several more times before closure.  We will talk to Plastics tomorrow to see how they would like to proceed with that.  We will also be meeting with infectious disease to discuss PICC placement and the possibility of long term IV antibiotics.  As much of a pain as that is, I really think it's necessary.  We need to kill this infection once and for all!

She has been awake and angry, mostly complaining about her 2 IVs.  She can't understand why she needs two! (Usually, she has one and the PICC line, but she doesn't count that!).   She has fallen into a pretty hard sleep now, despite the hustle and bustle of the PICU.

It's been a long day and sleep in the PICU is a joke, so I'm going to try to catch some while Abby is sleeping peacefully (thanks to our good friend Dilaudid). Thank you so much for all of your prayers today.  We feel very blessed to have so many people who care about our family.

Surgery update 5:45

We still have a ways to go.  They have opened up both sides and are washing everything out, but no hardware has been removed yet.  She will go to the PICU instead of back to the ortho floor because it was more involved than they thought, but we don't have details on that.

Surgery update 3:45

Abby just went back for surgery. She did really well going to sleep and was very calm.  The surgery should be about 3 hours.  There are a lot of unknowns, but this infection has got to go.  That's the #1 concern.

The Plan

I spoke to the plastic surgeon this morning.   He spoke to Our orthopedic surgeon (who is already in surgery) and the plan is to remove all of the hardware, leave the wound open, attach a wound vac, and close later this week on Wednesday or Thursday.  They are concerned about her high white count and think the only thing that will get rid of this is to take out all of the hardware. :(. We will deal with the kyphosis later, but this is what needs to be done right now.

Ortho has 5 cases today, so Abby will probably be last since she is an add-on.  One of the wonderful NPs came in to see us and cried when she heard the plan because she knows what a hard year this has been.  All this pain and suffering, only to have the hardware taken out.  I'm thankful she gets it. (She made me cry, of course!)

Abby has gotten sick 3 times today and is feeling pretty miserable, so she's getting some anti-nausea meds and some pain meds to get her comfortable and hopefully make today a little bit better.  

Wednesday, May 10, 2017

Guess what?!?!?!?


After nearly 5 long months, Abby got her halo off today!!  We had appointments at CHOP, but we were NOT expecting for it to be removed today.  That was a very exciting surprise!

 She had a Plastics appointment to check the wound first.  It is looking much better and he complimented us on our hard work.  He changed the topical medicine we are using and  said to keep debrieding the wound twice a day.  We have a pretty good routine for that at this point, so it's ok.  We will see him in a month.  

Then we went to Ortho and got X-rays.  After he reviewed the X-rays, he came in and asked Abby if she wanted some good news!!  Eek!  We are THRILLED that her halo days are over!!  While it's a real possibility that she may go back in a halo in the future, it is nice to be done with it at the moment.

Now, Abby is in a hard cervical collar.  Yes, it's still a brace, but she has MUCH more freedom now!!!!  She can take baths, is able to move her head slightly to look around, is finding it easier to walk, as can do her hair, hugs and kisses are much nicer without a bulky halo in the way, and best of all....SHE IS ALLOWED TO RIDE IN THE CAR AGAIN!!!  Being home bound was getting harder and harder and Abby was starting to become resentful that she was missing out on things, so this is probably the best part!  We still need to be careful (as always!) but it will be nice to go places as a family again.

So here's to being halo-free!  Thank you Lord for this unexpected blessing!  We are grateful!!!

Wednesday, May 3, 2017

Thursday, April 27, 2017

Causing Pain for Healing

For those that are not friends with me on Facebook, our visit to CHOP yesterday included cultures of the wound and new twice-daily cleaning and debriding procedures.  Since we live in a rural area with limited access to home nursing resources, this lovely job will fall on me.  Every morning and evening, I have to remove the bandage, wash the wound with soap and water that stings, and then dig out any infected tissue using sterilized scissors, tweezers, gauze, and applicators. 

This is a painful procedure that Abby naturally hates, and her screams and cries break my heart every time.  I feel awful for having to hurt her.  But by stripping her body of the infected tissue on the outside of the wound, she can heal from the inside out.  I have to cause immense pain in order to help my daughter to finally be rid of the infection that has caused her so many hospital stays and surgeries.  What a hard thing to put a six-year-old child through.

But then I started thinking that this is what God has to do with us in order to help us grow and thrive as well.  He is digging out the ugliness, pride, anger, sinfulness, and unclean thoughts in order to help us to heal from the inside out.  We scream and cry as we face challenging situations, and I'm sure God cringes and sheds tears just like I do when I cause Abby pain, but He knows it is for our own good.  

And in the end, when the wound is healed and the pain is gone, we will know that it was for the best.

So for those of you whose wounds are metaphorically being dug out and debrided right now, hold firm to your faith.  God isn't done yet.

Monday, April 24, 2017

Back to CHOP

Abby's incision is getting progressively worse.  We went to Plastics for a follow-up last Wednesday, and he changed some of how we do drsssing changes.  I emailed a picture Saturday night when we felt it was getting worse, and he increased the number of dressing changes each day and how they were done.  I have been SO diligent and careful.  Ridiculously careful!  Wound care is practically a sterile procedure in our house.

Unfortunately, it kept getting worse.  I emailed more pictures tonight and the plastic surgeon wants to see her on Wednesday during clinic.  He is going to change her antibiotic and increase the duration (she was supposed to be done in a week).  

Of course, we will pack.  We always pack when it's something like this.  Ugh.  

Friday, April 14, 2017

The Little Mermaid Recap

 Caleb officially had his school musical acting debut in The Little Mermaid!  He was Grimsby, Prince Eric's servant and confidant.  Caleb opened the show singing, "Fathoms Below" and also sang part of another song later in the show.  He sounded fantastic and looked so confident up there!  We were so proud of him and thrilled that he seems to have found his "thing!"

This was taken on the first night when the lights went up at the end of the show and he was able to see Abby.  He wasn't sure if we were going to make it home from the hospital in time, and he was thrilled that we were in the audience!


The talented cast of 4th and 5th graders!

Caleb and a princess :)

Caleb and Ariel :)

We are certain that there will be many more musicals in his future, since he's already looking forward to the next one!  I think I'm officially a theater mom!

Thursday, April 13, 2017

Adjusting to Life at Home

We got home last Thursday just 10 minutes before Caleb's show started!  We were all thrilled that we could be there to cheer him on.  He did awesome and I will post pictures soon.  In true fashion, we hit the ground running when we got home and haven't stopped since!

Abby has enjoyed being home and is taking everything in stride as usual.  She's been doing lots of school work during the day to keep her skills up.  Her medicine schedule is finally starting to slow down a little as we are able to wean some of the respiratory meds. For a while there, it was crazy!  My alarms on my phone were going off constantly!  Now, we have it down to 6 a.m., 8 a.m., 12 p.m., 6 p.m., 7:30 p.m., and 12 a.m.  It's not great, but it's better than it was! 

The reality of wearing the halo for 6-8 more weeks has set in with Abs.  She handles it amazingly well, but she does say rather matter of factly that she hates the halo.  I can't say I blame her!

She gets her stitches out next Wednesday and then we will see about when she can go back to school.  She's been managing her pain pretty well during the day, so I'm thinking it should be soon.

Wednesday, April 5, 2017

Post-op day 5

Abby had a good day and is up and moving much more.  We went downstairs to play Doctor for a Day, to meet a therapy dog, and to play bingo!  She won a checkers game in bingo and had some impressive doctoring skills...she even used the Site Scrub to clean the baby's IV for the required 15 seconds! 😂 #medicalkid


As always, our nurses here have been great and we have gotten great care.  They did repeat labs a few hours ago and most everything is looking better.  Abby's halo has been adapted and is back on.  Much to my surprise and amazement, she didn't fuss or seem to care at all!  She has been perfectly fine with it on!  

Abby is eating better, thanks to the Prednusone munchies, and she has really seemed to enjoy food again!  I'm hoping this is the end of the three week fast!


Funny story--I threw my hair in a pony tail this morning (who has time for hair and make up in the hospital?!). Abby pulled me in like she was going to give me a hug and said quite sweetly, "You look just like...a boy!" 🤔. Thanks kid!  😂

I've loved having my parents here to entertain Abby and just be a support.  They're the best!  We are hopeful that we are nearing the end of this hospital stay!!  🤞🏻🙏🏻 

Tuesday, April 4, 2017

Post-op day 4

I'm a little late in posting because we saw lots of doctors today!  She is quite popular!  (Not to mention that she's the star of the 4th floor with all of the nurse's doting on her!) 

Abby was pretty lethargic and pale yesterday, with some continued respiratory issues.  I requested pulmonary come see her, and they got things rolling with neb treatments and steroids. 

Blood work was also drawn. Hemoglobin was 8.0--a little low, but they are just watching it.  
CRP (infection marker) was 3.2, up from 1.1. The infectious disease team doesn't like that the CRP is trending up instead of down.  They will draw more blood in around 48 hours to see if it is down. 

The halo has been professionally cleaned in the same manner as surgical equipment, so it's officially disinfected!  The brace company is now making some adaptations to it, but it may take a few fittings to make it work.  This has never been done before, so it's trial and error.

Her incision has changed since this morning and we are all kind of worrying about it.  It is now very red and angry looking.  Plastics saw it and thought it might be a reaction to a dressing, but nothing that is on her is new to her.  She has used it all before.  They are watching that closely and I'm not going anywhere as long as it looks like that.  I'm pretty done with infections!!

We had a visit from a fellow VEPTR family today, which was so sweet!  They brought Abby some fun bracelets and press-on nails, which Abby thoroughly enjoyed!  My awesome parents came up today to visit and stay in the area.  Abby enjoyed Nina's suitcase of fun and was generally much nicer with her around! 

Monday, April 3, 2017

Post-op day 3

Abby had lots of desats last night, even with oxygen.  I'm going to get to the bottom of it and talk to the nurse practitioners today.  

Her bandage was changed this morning and her back is pretty bruised, but they said it's ok.  She has lots of stitches.  Apparently, the plastics team loves stitches!  (And yes, just about ALL of this was open!) 😳


Her pain has been under control with meds and she has been in a pretty good mood.  She worked really hard at PT this morning and did 4 stairs.  Her neck is very weak, so we are concentrating on keeping her head up.  Her PT is pretty creative and fun, which definitely helps!

 It sounds like she will go home with a picc and iv antibiotics, but I haven't heard that from the infectious disease team yet.  I'm waiting to see them.  If that's the case, the case manager will need to get rolling on nursing and equipment.

Her picc dressing was changed last night.  It's supposed to be changed 48 hours after placement, which the nurse didn't know.  She argued that it was a week until she finally called the IV team to ask.  Guess who was right?! (She also argued that it had only been 36 hours....uh, Friday afternoon to Sunday afternoon!). After messing up the dressing 2x, someone from the IV team came in and did it right at 10:30 pm.  🙄. Let's just say it's a good thing that I stay here and keep on top of things!

Matt and Caleb are at home so that Matt can go to work and Caleb can be in school and play rehearsals.  This is the week of his show!!  He is very excited, but hoping we will be home in time for all of us to go together.  Trust me, I am too!

Sunday, April 2, 2017

Post-op day 2

I went to the hotel with Caleb last night for some bonding time and a decent night's sleep. We enjoyed a movie and a game of Battleship.  

Daddy and Abby had a sleepover without a lot of sleep.  Abby got sick in the middle of the night and Matt did laundry until about 3.  Poor guy!  

When we came back this morning, Abby was all smiles!  She has been in a good mood this morning and worked hard with PT.  It definitely helped that our favorite CHOP PT Jo was here to play!!  She's the best!  Abby walked to the playroom and did some stepping up, sit-to-stands, and squats.  She is so tough! 

Matt and Caleb just left, and now we are waiting for lunch after getting a bath.  Her hair is looking cleaner with every wash!!  :)


Saturday, April 1, 2017

Post-op day 1

Abby did really well last night and didn't require oxygen.  Her cough is much better now, so we are going to just do nebs if needed instead of every 4 hours.  

We should be moving out of the PICU and onto our beloved surgical floor soon.  We love seeing all of our friends there!

Thank you for all of your prayers.  Abby is doing so well and is as sassy as ever!  I have definitely seen some eye rolls this morning. :!

Friday, March 31, 2017

Surgery update: 7 pm

We are with Abby in the PICU.  We didn't expect her to come up here, but the team decided that a night of close monitoring might be a good idea.  Nothing bad happened during the surgery, so we expect she will probably be sent to the floor tomorrow.  

She is in rare form with lots of funny anesthesia ridiculousness and yelling that we are all liars (including the doctors) because she didn't think her nasal cannula was in all of the way.  It was pretty comical!  She is starting to settle down a little now, thank goodness.  Her pain is pretty well managed with 2 IV meds and a pain pump.  Infectious disease is following her closely to make sure the infection is getting better.

Tonight will be spent keeping her calm and comfy.  Thank you so much for all of your prayers today!!


Surgery update: 3:45

We just saw our surgeon.  Everything went the way he wanted.  There wasn't really a lot of infection, and the left side was ok, so he didn't need to remove it.  He removed the right side, but left the bottom part of the right side that was unaffected. The Plastics team did a muscle flap over the area, which is involved and she will have drains for it. But, he doesn't need to go back in again, so that is good.

Overall, good news.  We are still waiting for her to get out of the OR right now before we can see her.

Surgery update: 2:00

Abby is still in surgery.  We haven't gotten much in the way of updates, but Dr. Cahill is done his part.  We are waiting to hear from him.

Surgery update: 12:10

Abby just went back.  She did well going to sleep and liked having her new puppy from Child Life with her.

Surgery is scheduled for 3 hours or so, depending on what they find when they get in. 

Thursday, March 30, 2017

Surgery Tomorrow

Thank you all for your overwhelming prayers and support.  We are thankful for the love you are pouring out to our family.  This has been a really tough day and I certainly am struggling with blaming myself for missing this.  

Abby's surgery will be tomorrow, although we aren't sure what time since she is last minute.  Dr. Cahill will remove the right rod with the hope that the left side can stay in.  If there is any bacteria on the left side, he will remove that as well.  He is very aware of what that could do for her kyphosis and doesn't have the answers for that right now.  Surgical options don't seem to be working for her.  

Although a lot will depend on what he sees when he gets in there, he is expecting that it may take several different surgeries in order to close the wound completely.  This would mean Abby will be here for a while. 

Abby is still coughing a ton and has a fever when she is without Tylenol.  They have her on Albuterol around the clock every 4 hours, but it isn't enough to let her rest.  There's some concern that the infection has spread and is causing this.

Caleb's musical that he has worked SO hard for is next Thursday and Friday.  Dr. Cahill has promised to avoid doing surgery on those days so that we will be able to take turns going to see it.  It breaks my heart not being able to fully be there for him when this is something he has worked so hard for.  I hate having to be in two places at once.  It is an impossible choice.  If you see Caleb, please give him a hug.  He is so upset over this whole situation.  

We would be honored if you would wear purple for Abby tomorrow.  I don't even have any here, since this was NOT AT ALL expected.  But my heart will be in that OR nonetheless. 

Thank you all for praying us through this very difficult time.

Please Pray

This is a really difficult post to write.  We brought Abby to the CHOP ER this morning because she just didn't seem to be getting better from the pneumonia.  Knowing that the halo complicates things and other hospitals wouldn't touch her, we decided to just come here.  After checking out the X-rays, they determined it wasn't pneumonia.  Well then, what is it?  

There was a lot of necessary coordination needed in order to remove the halo.  When they did, we found that about 3 inches of her rod is exposed and her back is very infected.  We had no way of knowing because the halo covered everything, but it is killing me that I didn't catch it.  Killing me.

She will have surgery tomorrow to remove the affected hardware and clean out the infection.  We won't know how much of the hardware has to be removed until he is in there and sees it.  The halo days are over because of the infection and wound, which is not a good thing.

We are still in shock, given how "well" Abby has been acting.  The halo has been apparently holding everything together and hiding all of the symptoms.  The sight of the hardware was pretty horrifying, so I won't be posting pictures here.  

Please pray for Abby and for us.  We could all really use some good news.

Wednesday, March 29, 2017

Darn Pneumonia!

Our pediatrician called today with Abby's blood work and one of her numbers was pretty off.  It's a marker for infection, but could also just reinforce the pneumonia diagnosis. We are going to CHOP tomorrow, so they can check her back carefully to look for signs of infection.  

Unfortunately, Abby still has a fever, her ear is also still hurting, she has a horrible cough, and the culture isn't looking great. Dr. S isn't quite sure what CHOP will want to do, but he told us to pack a bag. 

Right now, her oxygen levels look good and she is resting comfortably, so I'm ok with keeping her at home.  We are praying that she stays that way!

Tuesday, March 28, 2017

Germs, Germs, Germs

Abby has had a lingering fever off and on for a week.  She only went to school for a day and a half last week, but then was fine over the weekend.  I sent her yesterday thinking that the germs were behind us (after using 2 cans of Lysol spray and a jar of wipes on our house!), only to get a call from the nurse saying Abby had a fever of 102.7.  Ugh.

I took her to walk-in sick visits yesterday and was thrilled that our regular, amazing pediatrician would be the one seeing her.  (They are all wonderful--Dr, S. has just been our go-to for the last 6 years!)  He did a flu and strep test, which came back negative....leading us toward wondering if it was her incision.  Ugh.

He ordered a chest xray and blood work to check for pneumonia and infection markers.  We got those done this morning.  The blood work won't be back until tomorrow, but he just called with the xray results...pneumonia.  The halo makes it difficult to see the lungs clearly, but the radiologist felt pretty strongly that it was there.  Thankfully, Dr. S had already put her on an antibiotic to clear up any lasting ear infection (the 3rd antibiotic for it!), so it will also cover the pneumonia.

God bless Dr. Singh and his thoroughness.  I actually was thinking the xray was a little overkill,but I'm so glad he ordered it!  Now, we will monitor Abby closely, keep her comfortable, and call Dr. S. if anything changes.  Thank goodness for the pulse ox, oxygen, and nebulizer we have in the house!

Abby will be home the rest of the week, since she already has an appointment scheduled on Thursday at CHOP and Friday is teacher inservice.  I'm hoping that a week of rest will help her to kick these germs once and for all.  She slept for 4 hours during the day yesterday and has been asleep for 2 hours so far today.  She's not really eating anything, but I can't really blame her.  The only thing she seems to really want is Wawa lemonade, so that's what she's getting!

If you ever questioned my obsession with protecting Abby from unnecessary germs and requiring that people who come to our house have the flu vaccine...this is why.  We are SO careful, and she still caught a little cold that turned into pneumonia.  Just imagine what it would be like if we didn't limit her exposure!  Now, we are just praying that she will stay out of the hospital and avoid anymore germs.

Monday, March 13, 2017

Moms Can't Get Sick

Our whole family has had crud of varying kinds this last week.  Now it's my turn, except that moms can't get sick!

Chloe has been keeping me company, and Matt has been great about taking care of the kids!


I am feeling a lot better and am just waiting to be fever-free for 24 hours before I get close to the kids again.  So we prayed and sang like this tonight before bed!


I would LOVE to have a snow day tomorrow, but my chances seem to be slipping through my fingertips. :(

Thursday, March 2, 2017

Heading Home

We are going over the Bay Bridge, heading home.  The brace company made a bunch of adjustments to the brace so that we could access her ear better. We were also able to put there a piece of the Duradry fabric we have for her chin, so we are hoping that will keep the brace from rubbing.   I was able to clean the area and it is definitely infected.  We are hoping that the brace changes will allow the infection to air out and heal.

We still need to go to our appointment at the end of the month because he wants to get X-rays at the 3 month mark and see how things are looking.  

It's a lot of driving for one day, but Matt doesn't mind and Abby has been fantastic in the car.  Another successful road trip to our Philly vacation home! 😉

Wednesday, March 1, 2017

Heading to CHOP Tomorrow

Sadly, Abby has had a fever all day and is feeling lousy.  She has no other symptoms and has been completely homebound, so we are pretty certain it's from the infection.  After lots of phone calls back and forth to our pediatrician and CHOP, ortho and the orthotists want to see her tomorrow. They will take a good look at the infection without the halo as well as make adjustments to the brace to keep this from happening again. 

We are not planning on staying, but we have been around the block enough times to know to pack a "just in case" bag. 

Road trips are a lot more fun when the destination is vacation.

Tuesday, February 28, 2017

Living With a Pinless Halo: Skin Breakdown

One of the biggest worries with a pinless halo is skin breakdown.  Because the halo is right on the skin, it constantly rubs.  Other braces can come off to allow the skint to breathe, but not the pinless halo.  We were warned that this is usually the biggest issue.

Abby has had her pinless halo for about 2 1/2 months now.  (WOW!!)  We have been very diligent at bathing her and checking carefully for skin breakdown.  She had issues around her jaw for a while, which we were able to address and basically cure!  Our recent battle has been around her ears.  Her left ear has been in a lot of pain from the brace rubbing against it.

This morning, she was screaming in pain to the point where I really felt that I needed to see what the issue was.  I knew it was rubbing, but could only see redness.  This seemed like more than just a little irritation.  After shining a flashlight and getting creative with looking under the halo, I realized that one part had caused a pretty deep gash on the lobe of her ear and it had become infected.  This was completely covered by the halo, so we had no way of knowing.  Matt took her to the doctor this afternoon.  After consulting with CHOP, the pediatrician gave her an oral antibiotic.  CHOP also said that they would notify the brace company so that additional padding could be added when she goes for her next appointment.  If she gets a fever, we are to head to CHOP.  But, we are hoping that the antibiotic will take care of it!

If your child has a pinless halo, be relentless about skin care, but also listen to your child!  If something hurts, investigate it.  You may not be able to easily see the problem, but you need to address it before it becomes more of an issue.  I wish I had caught this sooner, but it was just really hard to see!

Monday, February 27, 2017

Abby's new room

Abby got her new furniture tonight.  This was her while she was waiting for the guys to set it all up.


Chloe approves too!!


One of Abby's favorite things is that she can open all of the drawers by herself--with just one hand.  Her antique furniture was very difficult for us to open, let alone her!



She is one happy little girl!  I have some work to do tomorrow with organizing everything and we are still working on figuring out the best place for the feeding pole (it's making the dresser have to be off-center).  I'm going to get a new book shelf, get a twin dust ruffle, move the mirror, and put a new white wall shelf in.  There's work to do, but it is definitely an exciting day!

New Accessory

Caleb is going to be joining the glasses club!  He has astigmatism, so he will need them to see distances.  

We bought two pairs because he's a scatterbrained 4th grade boy, but one pair will stay home all of the time.  



Sunday, February 26, 2017

Such a Sweet Gift!

Abby's amazing one-on-one went on a Disney cruise and brought her back the sweetest gift!  


She brought pictures of Abby and then got a picture taken with Anna, Olaf, and Elsa while holding the pictures.  She got them all to sign the picture and brought everything home for Abby in this case.  Isn't she the best?!?!?  Seriously!!!

Thursday, February 9, 2017

Coming to Grips With Reality

It hit Abby last night that she's really kinda done with the halo.  Getting the news that she had to wear it even longer than originally planned didn't help much either.  But, we are all making the best of it and hoping that she is able to swim this summer.  She will be in a hard cervical collar for several months after this, but I'm hoping she can at least sit on the step at the pool and cool off.  This also means she will most likely still be in a cervical collar for our summer vacation. :(

We are also going to have to change her scheduled intensive outpatient therapy at KKI because she will still be in the halo.  I'm hoping to call them today or tomorrow to push it back a month.

As much as I try to plan things...lol!

Wednesday, February 8, 2017

CHOP follow-up

Abby had a follow-up today at CHOP.  They are very encouraged by her progress.  The X-rays may have shown some movement of one of the rods, but it may also be the angle of the X-ray.  He wants to follow-up with her in another 6 weeks and do repeat X-rays.  But to be safe, the halo is going to stay on for at least an additional month, which means it won't come off until the end of April at the earliest. 


We hadn't gotten our hearts set on a date for this very reason, so it's fine.  We figured it would happen, which is why we are just saying it will come off in the spring.  I'm glad he is erring on the side of caution.

The orthotist changed the chin and forehead pads, as well as her brace shirt.  Everything was SO nasty!!  And there were crumbs all in her shirt!


 I was able to gently wipe her down while the brace was off, but it was very painful because her skin is so raw.  I see lots of lotion in her future after the halo is gone!  

We were also able to get them to manipulate the halo headgear a little bit to make her ears a little more accessible for hearing aids.  The right side had become nearly impossible to put in!  Abby didn't like all of that much, but I do believe the end result is better. 


It ended up being a more traumatic visit than we had expected, but she's happily watching Annie in the car now with a promise of ice cream in Middletown.  (She's lost a few pounds since surgery, so we are increasing the ice cream intake!!) 😁

Sunday, February 5, 2017

Living With a Pinless Halo: Sleeping

I honestly thought sleeping with the halo was going to be a much bigger deal than it has been.  Once she made it through the first few days in the hospital (where she was in a lot of pain to begin with), she has been totally fine.  She can sleep on her back or her side, and doesn't seem bothered by it at all.  I never put it in her head that it could be uncomfortable, so she just learned how to adapt!

Some have said that with a regular pinned halo, it is most comfortable to sleep in a recliner (or in a bed where the head can be raised).  I was prepared to have Abby sleep in our recliner in the living room if needed (thereby causing me to sleep on the couch!), but it hasn't been an issue at all.  She sleeps in her bed with just one pillow, just like always.  She seems very comfortable!

Friday, February 3, 2017

Living With a Pinless Halo: Learning More About the Face!

The jaw line is definitely the most challenging area to protect while in the pinless halo.  While we were using Karaya powder in the past, we realized that we were not able to get the skin dry enough after washing and the powder was almost creating a mud that stuck HORRIBLY to her skin.  She had multiple areas that would bleed and be so red and irritated.  It was miserable for her.

I was hesitant to change what the hospital set in place, but my husband convinced me to try going without the powder for a few days.  Each time we washed the area, we tried to scrape out the caked on powder from the chin/jaw area of the halo.  After several days, I noticed that it was significantly less sticky.  We have been leaving off the Karaya powder for about 2 weeks now, and cleaning the area is SO much easier.  It isn't sticking and there's been no bleeding.  She is much more comfortable too!

One thing I have noticed is that the band across the forehead is very tight and hard to get down in to clean.  Her skin is very dry there.  I do my best, but I think she will probably need some moisturizer for a while once the halo is removed.

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!


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!!