Sunday, December 31, 2017

Goodbye, 2017!

Yes, I do still have a blog!  I know I’ve been MIA here for a while, but I figured a New Year’s post might be a nice way to get back into it.

We had a wonderful Christmas and were thankful to be home.  It is definitely a unique perspective when you spend so much time in hospitals!  Our break has been slower than usual with much less “going,” which is a nice change of pace. 

I would be lying if I said that I loved 2017.  It was tough—probably the toughest we have had. Abby spent time in the hospital for 7/12 months for repeated rod infections and a large wound that just wouldn’t close, and losing the rib rod proved to be catastrophic for her.  The rib cage collapsing wreaked havoc on her tiny little lungs, putting her in lung failure.  All of this also had a profound effect on Caleb, who hates when we aren’t all together and worries so much about his sister. 

But I learned a lot this year too.  One of the biggest lessons was not to get too comfortable in your situation, because it can change at any minute.  Abby did fantastic in 2016 and we were thrilled with her progress.  We thought the hard days were behind us...and then this came along.  You can’t count on modern medicine, or good days, or health...all you really have is God.  Thankfully, He is truly all we need and He carries us through some really tough months.

There were some highlights of 2017 though, despite the hard times.

January:  Caleb turned 10 and had a laser tag birthday.

February:  Abby had her first school presentation, teaching her class about red pandas.

April:  Caleb performed in The Little Mermaid as Grimsby and had his first solo!

May:  Abby got her halo off after 5 loooong months and we enjoyed some warm days at our local beach.

June:  Caleb went to a day camp with his cousin.  Since Abby couldn’t go as planned because of her health, we had camp here!  Each day had planned activities and a surprise playmate to enjoy them with!

July:  We celebrated Matt’s birthday and visited The Adventure Aquarium in New Jersey.  We got to see an adorable penguin up close!

August:  Caleb participated in a performing arts camp and Abby had lots of cousin time!

September:  With the start of school, Caleb began 5th grade and Abby began 1st grade with the home-hospital program.  Her wound FINALLY closed at the end of the month and she enjoyed her first real bath in over a year!  She also started piano lessons, which she really enjoys.

October:  Abby turned 7 and celebrated with a trip to see The My Little Pony movie.  The kids went trick-or-treating for the first time!

November:  Caleb was selected to be part of The All-County Band, which he was really excited about.  We enjoyed Thanksgiving with family.  Santa gave us an early Christmas present of tickets to see The Lion King musical!  Everyone loved it.  

December:  We were chosen to participate in Fantasy Flight, which took us to the North Pole to see Santa!  It was pretty amazing and definitely a precious memory.  We celebrated Christmas together and favorite gifts were:  Kindle Unlimited (Caleb), a Kit doll with her dog (Abby), knobs for the kitchen cabinets (Julie), and tickets to see Les Miserables (Matt).  

In 2018, we are looking forward to Abby getting a surgery that will hopefully improve her breathing enough that she can go back to school.  As always, we are excited to see Caleb perform in band and chorus concerts, as well as Lafeu in Beauty and the Beast. He has become quite the performer and we love to see him develop as a musician, singer, and actor.  We are hopeful that Abby’s health will improve so that we can take a special vacation as a family this summer and make more memories!

We are thankful for lessons learned and precious memories, but we are certainly ready for better news and health in 2018!  Here’s to new beginnngs!  

Monday, October 23, 2017

CHOP Appointment

We met with Dr. C this morning.  He had had a phone conference with our Ent and pulmonologist at Hopkins last Wednesday.  Together, they decided that putting the VEPTR back in on the right side was the best option.  He checked her wound today and doesn't feel that it is healed enough to do another major surgery.  The incision he will make it any in the same place, but there's always a higher risk of that new skin tearing if it's not fully healed.

So....he will do the surgery, but not yet.  We made an appointment for January and he will reevaluate then.  We just need to keep her healthy until then.  We don't have a tentative timeline yet--we will discuss that at the next appointment.  

We are thankful that he is now willing to do it--we just wish it was going to be sooner rather than later.  But we will hunker down for the winter and get that back completely healed!

Sunday, October 22, 2017

Happy Birthday Abby!

Our little family spent the afternoon doing something fun in Philly for a change!  Today is Abby's 7th birthday, and she has an appointment tomorrow morning at CHOP.  But today was all ours and we came up after church.  We decided to make a trip to the Philadelphia Lego Exploration Center.  It was a lot of fun!

Sunday, October 8, 2017

Adjusting to the New, New Normal

We got home late Thursday night (sorry to those of you who aren't on Facebook and didn't know that!  I'm terrible about posting here after we get home and things are crazy.)  Abby has had a relatively good couple of days, although today her respiratory rate was a bit higher.  We are trying a different technique with her vent to see how her body reacts to it.  It's called a "Sip and Puff," and no it is not illegal activity!  Basically, it's a concentrated bipap setting that gives more pressure for a shorter amount of time.  The idea is that once she gets used to this, she may be able to do this instead of spending hours on the bipap every day.  She can just "sip and puff" for 10 minutes or so as she needs it.  She is adjusting to it pretty well, but it requires you to only breathe through your mouth and that's pretty weird for anyone.  For right now, we are doing the sip and puff in between treatments and still doing the longer times on regular bipap.  The hope is that this will allow her to be off of the bipap more often though.

A lot of people have asked if we have a plan yet.  It's not a clear-cut answer.  At this point, the doctors at CHOP have decided that Abby is not strong enough to withstand such a big surgery when they put the VEPTR back in.  Because of the scar tissue, it's an even bigger surgery than before.  This was disheartening to us because we know how badly she needs this surgery, but we also want her to be safe and strong enough to recover. 

It has been determined that Abby needs to have a trach so that she can get the ventilation going straight to her lungs to help her breathe better.  Too much of the pressure has been leaking out of the nose and mouth and has a long way to travel to get to her lungs, so she's not getting as much pressure as she should be.  A trach is the best solution to get her breathing better.  (And yes, we do remember trach life all too well!)

Unfortunately, this is also not a straightforward trach and there's some question as to whether our ENT will be able to put the trach in.  Lots of doctors from CHOP and Hopkins need to talk together to discuss the plan of action.  It will be a carefully orchestrated procedure with many hands involved, if it happens.  Our wonderful pediatrician is helping us to coordinate all of that so that I don't have to be the go-between all of the time.

So while we would like to say that we have a plan, quite a few pieces of the puzzle need to fall into place in order for that to happen.  It is an unsettling place to be, and we are anxious.  We certainly never thought that we would be praying for a trach, but we would ask that you all would join us in praying for that because it is the best option for Abby at this point. 

Tuesday, October 3, 2017

Treading Water

There's no way to sugar-coat this.  Abby is in respiratory failure.  Her health has declined over the last few months to the point that her tiny lungs can no longer sustain her.  None of the "bandaids" they have tried have done much, including oxygen.  See, it's not an oxygenation's that her lungs are more or less deflated.  Giving her oxygen doesn't really help that. They're using it to get her levels up a little higher when she is sitting, but it doesn't seem to be helping at all when she is walking.  We haven't even attempted stairs yet.

We have had lots of serious conversations with our team here and at CHOP.  Their dedication and sensitivity in all of this has proven to us once again just how blessed we are to have two fantastic teams working with Abby. 

Because our plan hasn't been finalized yet and seems to change every time someone walks through the door, we aren't quite ready to share publicly.  Once there is a solid plan in place, we will certainly let everyone know.  For now, we truly appreciate your prayers, love, support, purple thoughts, and pet photos!

Abby's body is tired, but she's still so full of life and feistiness.  Just today, she told me to "slow my roll" when she thought I was getting ahead of myself in a game and she exclaimed, "I still got it!" When she passed a word list. 🤣😂.  If she isn't giving up, neither are we.  

My heart is breaking for my girl, but I know that God is in every detail of this.  

Even If...

Sunday, October 1, 2017

Abby is an Enigma

Well, we're still here.  Abby had a great night and I was very encouraged.  But then she had high rates throughout the day, including a respiratory rate of 95 after walking just halfway around the unit.  We are going to try stairs tomorrow to see what she does with that.  

But they can't figure out any rhyme or reason to her high RRs, as they sometimes happen when she is hustling lying in bed.  The one pattern we have identified is that she does better right after a respiratory treatment, but that is to be expected.  I can't limit any movement to only immediately after treatments!!  

I'm hoping for answers tomorrow...and to see our pulmonologist. 

Saturday, September 30, 2017

Hospital Life

Abby continued to need bipap off and on today, in addition to her regular scheduled times.  It seems to be about 3 hours after treatments that she starts needing bipap.  But she was in a pretty good mood and loved her visitors!  Matt and Caleb came this afternoon, and then my mom and dad brought Anna and Lucy this evening.  Abby was excited and surprised!

Now, she's enjoying Descendants 2 on Disney Channel and getting her treatments.  :)

As is typical for the hospital, things don't get done as quickly on the weekends.  Pulm ordered an echocardiogram to check for pulmonary hypertension (always a concern), but only emergency echos are done on the weekend.  They want to talk to CHOP about her thoracic insufficiency, but that can't be done until Monday.

  Pulm did increase her pressure support to the highest setting in hopes that putting more air in her lungs will help.  We will hopefully see a difference tonight. If not, there will be many more serious discussions.  

We would appreciate your prayers that the increased pressure support makes her respiratory rate go down!

Back at Hopkins

Abby came back to Hopkins last night after talking to pulmonology.  Her respiratory rates have been very high again when doing literally nothing.  She was admitted to the floor.  

It was a Rough night. The respiratory rate was 68-70 sustained on bipap, when she is typically in the 20s while sleeping on it.   Heart rate was in 150s.  She was very asleep, but so fast.  When we repositioned her, she woke up and slowed down a little, but then went right back to where she was when she was sleep.  Pulm came in and saw it too.  They called the attending and increased her breathe rate on the vent to 14, but it didn't help. We thought they might send her to the picu.  

10 min off bipap this morning and she is 70 laying in bed, so she is back on and getting a treatment.  Hopefully it will be better after that.  They won't let her eat or drink on bipap so I hope her numbers come down so she can eat breakfast.  

Tuesday, September 26, 2017

Guess what??????

Check out this beautiful, CLOSED WOUND!!!!

We are so very thankful!  God has been faithful through these awful months.  We are thrilled for some happy news and Abby celebrated by taking her first REAL bath in over 9 months.  🎉

I have already contacted orthopedics to see about a tentative VEPTR reinsertion date!  Onward and upward!

Wednesday, September 20, 2017

The Hated Phrase

So, the good news is that Abby came home today!  Discharge actually happened pretty quickly and what we ended up waiting on was the lunch that we had dalready ordered and the respiratory treatments she was due to get at 12.  As soon as they were over, we headed out!  Caleb was surprised and thrilled that we were home (we never tell him unless we are certain because we don't want him to be disappointed if something changes), and the kids happily played together before dinner.  Then they had a puppy visit!

Unfortunately, the bad news is that the doctors don't really know why the very high respiratory rates are happening.  They were able to rule out viruses and high CO2 levels, but they weren't able to pinpoint the cause.  The pulmonologist we saw used the dreaded words, "Progression of Disease."  I seriously almost hear "dun dun DUN!" music each time it is said because it's such an ominous phrase.  It is certainly not something the parent of a medically fragile child ever wants to hear. 

So, they sent her home with the caveat that Abby will most likely need increased bipap support, needs to have a swallow study to make sure she isn't aspirating (scheduled for next week), and will have a sleep study in October (previously scheduled) to tweak her settings because she probably isn't being ventilated enough. 

It's hard to hear that your child is getting worse and there's not a whole lot they can do about it.  We are clinging to Jesus and to the hope that getting the VEPTR put back in will improve her lung functioning.  And every day, that wound is even closer to closing!!

Tuesday, September 19, 2017

Hospital School

Despite having limited resources, Abby and I were able to get quite a bit of school in today!  I got creative and used what I had, including writing on paper towels!  

We did some good work with fractions and discovered that the cabinets in her room can be written on with dry erase markers!  Sweet!  

She also did some online work on the iPad, much to her dismay.  That's not her favorite, but she did finally do it.

Abs' respiratory rate is still pretty high in general, but they have ruled a lot of things out.  Unfortunately, we still don't know what is causing it.  I was able to convince them to let me get her up and moving a bit to see how she did, which was telling.  We will see what they say tomorrow.  

Matt and Caleb came up to visit tonight, which Abby loved.  They both happily played Wii with another boy in the playroom.

  The visits are never long enough, but we are hoping to be able to be home soon. 

Monday, September 18, 2017


I brought Abby to the Hopkins ER this evening at the request of her pulmonologist.  I called her this morning to fill her in on the weekend and to tell her it was continuing.  Then, I let her know that even on bipap, her respiratory rate is still very high, which was new to us.  Usually, bipap does the trick.   She told us to come here, so here we are.  Hopkins has great expedited ER time when the doctor calls ahead for you, so we went almost immediately to a room, and then she got a chest X-ray shortly after.  

The X-ray showed that the Right lung is diminished, which isn't surprising.  "Noticeable deformity of spine and ribs."  Oh my gosh!  Seriously?  We had no idea! 🤣. That one made me chuckle.  I really hope the radiologist didn't think that was new information for us!

An IV was finally put in on the 3rd try and her blood gas (CO2 level) was good, so that was reassuring.  But her respiratory rates and heart rate are still very high (RR is 66 on bipap and HR is 142 asleep as we speak.). The decision they are making is PICU versus floor, so I'm not sure how long it will be.  "Soon" is a relative term in the hospital.

Sunday, September 17, 2017

Plugging Along

Our CHOP appointments last week were productive.  Her plastic surgeon was thrilled with the progress of her wound.  It should be closed by the end of the month!  We will see him in mid-October and if everything goes well, Abby will be cleared to proceed with the VEPTR reinsertion!!

We had some fun at the aquarium after her appointment.  Abby really loved being out and it was the perfect scenario--the place was empty!!

She had her MRI the next day and recovered well from that.  We came home Thursday night to a very happy boy and dog!

This weekend has been kind of rough, sadly.  Abby's respiratory rates have been very high and her saturation levels have been low...we want them the other way around!  She's been on her bipap a lot this weekend and we have had to stay inside.  Even then, her respiratory rates have been in the 70s.  She has been SO out of breath and has been really frustrated with herself. She is literally gasping for breath while lying on the couch.  She's fine on the bipap, which is why we didn't take her in, but it's still a little concerning. I'm calling our pulmonologist tomorrow to see what she thinks.

Tuesday, September 12, 2017

Simple Joys

Abby loves to water the flowers with her watering can!

We visited the puppies one last time before they go to their new homes.  She is going to miss these dogs!  They have been a bright spot in her summer.

Abs hasn't taken a "real" bath since December because of her open wound.  Just think about that for a second....sponge baths and hair washing that takes 2 people for 9 months. Lying down on a bath bench to wash your hair to avoid getting the wound wet for 9 months.  (Well, actually, she had 4 months in the halo when she couldn't bathe or wash her hair at all!!!) Crazy.  This girl LOVES her bath and has so missed playing.  She asked if we could put a little water in the tub tonight so she could walk around in it.  She had the BEST time stomping, sitting on her bath bench kicking her feet, and playing.  💜

Tomorrow morning we head to CHOP for a few days.  Abby has an appointment tomorrow with plastics.  We know he is going to be excited about her wound!!

I'm so thrilled we are almost there!! (Remember, all of the pinkish skin was open at one point!)

On Thursday, Abby will have a dynamic MRI of her full spine.  This will give us good information about her curvature and the degree of her kyphosis (which we know has gotten worse since hardware removal.) We will also learn more about her lung volumes and what her chest walk really looks like these days.  It will be excellent info for Dr. C to have in preparation for the rod reinsertion.  

The MRI will take about 4 hours, so she will be under general anesthesia.  We are hopeful that she will wake up fine without any additional breathing issues, but we are in I chartered territory these days!  The anesthesia team is booking her a room just in case, and we are praying we won't need to stay.  But we have learned to pack as if we are!

Saturday, August 26, 2017

Today, We Were Almost Normal!

What an awesome day!  The weather was beautiful with low temps and humidity, which meant Abby could be outside!  We took full advantage of this today!  Her cousins were staying here, so they played in the water table, laid out on the hammock, and played with the fairy houses on the deck.  

Later, some friends came to visit and we sat on the deck and ate had popsicles and played with light sabers.  There was a lot more hammock time too!  They all had a great time running around.

In the late afternoon, we took a rare trip out of the house to our local beach!!  There were only a few families as far as we could see, the weather was gorgeous, and the kids had a great time playing in the sand, collecting shells, and getting their feet wet.  (Getting truly wet is a big no-no for Abby for several reasons, so we just told everyone not to go in any farther than mid-calf.)

After a while, sweet Abs was so tired that she laid on the beach blanket!  She actually went upstairs and crawled into bed early!  I'm pretty sure this was the biggest day she has had in a long time, but she loved every second of it.  The sweet giggles of those little girls is music to my ears, and their special "Best Friends Forever" cheer they made up made my heart melt.  I hope they really will stay this close forever!

Matt and I declared today "normal," which we definitely haven't had in a while.  It's true that most normal people don't do respiratory treatments every 4 hours or hook their kid up to a ventilator, but we are slowly realizing that life can resemble some sort of its previous normalcy.  The difficulty of the last year has made us even more aware of just how precious days like today are.  

Friday, August 18, 2017

Ortho Meeting

We saw Dr. Campbell this morning.  He took one look at Abby and said, "Well, we've gotta get that VEPTR back in!"  We wholeheartedly agreed!  When we asked about the opposing opinion we had before, he noted that in this case, being old equals having more experience in these situations.  He will talk to the other surgeon to let him know the plan.

So what is the plan?  Well first, we have to get this wound healed up.  Nothing surgical can be done until it's closed.  When it is closed, we can schedule surgery.  The good news is that the wound shrunk a centimeter in both length and width in the last week!!!!  This is fantastic news!  

The kyphosis still needs to be dealt with, but the ribs (well, the lungs) are the primary concern right now.  We may still go to Boston for the kyphosis, but we are going to take care of this first.  

He also LOVED her shirt and took a picture of her to use in a slide for a presentation he is doing for the FDA next week!  😍

We are so, so thankful for Dr. Campbell.  He is a wonderful man who will never give up on a kid.  Abby is complicated and this surgery is even more challenging than the others due to scarring, but he said he wouldn't suggest it if he didn't think it would work.  We have hope, and that's the best possible outcome of this meeting!

We are now waiting for a CT so that he can get a little additional information about her lungs.  It won't change his approach, but does give him more information before he goes in.  She will also have a full spine MRI when we come back in September.  Dr. Campbell really likes to have as much information as possible.

Thank you all for your prayers!!  We would ask that you pray that Abby stays healthy and that her wound heals quickly and without further complications.  Then we can get that VEPTR back in as soon as possible.

For those interested: (X-rays below)

The picture on the right is when she got both VEOTRS in.  Note how open her ribs are and how relatively full her lungs are.  (40% lung capacity is awesome compared to what she's getting by on right now!). The picture on the left side is her most recent X-ray.  If you zoom in, you can see that her ribs have collapsed.  The loops were anchors for the VEPTR that stayed in and have drastically moved position.  Her shoulder blade has become tucked under her spine, so he will have to pull that back out as well.  It will be a bigger, more painful surgery, but it will be worth it to help her breathe better.

Thursday, August 17, 2017


We had a pulmonary appointment yesterday where our Pulmonologist stressed the need for a plan for Abby from CHOP.  She echoed my frustrations from a medical standpoint.  We are really hoping that tomorrow will give us answers, but we have also gotten an appointment for Boston and are pursuing those plans.  

We keep detailed data about her oxygen levels, respiratory rates, and necessary interventions.  I took it in to our pulm and she was very happy to have it.  After examining the data and the trends, she decided that it is best for Abby to be on bipap twice a day during the day.  She reiterated the big concern for germs and the danger of her catching even a slight cold.  We have decided that Caleb will change his clothes from school as soon as he walks in the door to hopefully keep those school germs out of our house.  

So, as we already knew, no school until there are some big improvements.  Our pulm also helped us to create a plan for Abby flying to Boston, which is a new issue we didn't think we would face.  Changes in altitude and pressure can wreak havoc on kids with respiratory illnesses, but we have a plan to keep her safe.  

Please pray for our appointments tomorrow.  We are hanging out at the hospital tonight and will head to the hospital first thing in the morning.  The bottom line is that we need a plan.

Monday, August 14, 2017

Appointments, School, and Looking Toward the Future

This week is going to be a busy one around here.  Abby has 2 appointments in Baltimore on Wednesday.  She needs her hearing aid mold redone (it squeals constantly!) and she has a pulmonology appointment.  Not too much has changed with her breathing--she is usually still requiring daytime bipap, and sometimes needs it twice during the day.  There doesn't seem to be a rhyme or reason to it, except that it is always in the afternoon.  We have kept the temperature in our house lower in hopes that heat will not be a factor, but the weather has really been pretty mild anyway.  I don't think our pulmonologist will change much at this appointment, since there really haven't been improvements.  I have a feeling we will just "stay the course" with daytime bipap as needed, respiratory treatments and airway clearance 4x a day, and inhaled steroids 2x a day.

On Friday, we have appointments at CHOP with the infectious disease team and our orthopedic team.  This is the long-awaited discussion about what the plan is for Abby.  We are hoping that they will know where they will go from here and be able to give us a timeline of sorts.  They avoided us for 3 admissions, despite us practically begging them to come, and we are pretty sure it's because they really don't know what to do.  So now we have made an outpatient appointment so that they have to see us and gave them 3 weeks to figure it out!

Abby is complicated and we get that.  I know they have exhausted most surgical options.  But we aren't ready to give up and we don't want them to be either!  I've been researching other methods, doctors, and cases like crazy in the past few weeks.  There has to be something we haven't tried.  Matt and I have decided that if we don't leave this meeting on Friday confident that they have a plan and are willing to keep fighting for Abby, we will pursue a different surgeon--most likely in Boston.  It's not ideal because if we travel to Boston half as much as we travel to CHOP, the airfare will be ridiculous.  Not to mention, there are a lot of factors involved in switching to another hospital.  It's not a simple process.  But we will do whatever we need to do to take care of our girl.

So this week, please pray that the surgeons have a plan and are able to discuss with us where they plan to go from here.  This will determine how our pulmonologist proceeds and whether or not we will continue to be seen at CHOP.

Also please pray for Abby and Caleb as the start of school draws near.  Abby is not going to be able to go to school for the foreseeable future, which is heartbreaking for all of us.  I'm not sure that she quite understands what this means, although we talk about it a lot.  She will be getting home/hospital teaching each week, in addition to what I will do with her, but we don't expect that she will actually go to school for quite some time--if at all.  For a girl that is as social as Abby, this is a tough pill to swallow.  Caleb has also had a hard time with realizing that Abby won't be there with him.  That boy sure does love his sister.

The main reason for her not being able to go is that our pulmonologist has said in no uncertain terms that catching anything would be very dangerous for Abby.  Couple that with her need for intermittent daytime bipap and an unstable respiratory situation and it's just not a good idea.  When I asked our pulmonologist about school, she flat out said no.

This will also mean, of course, that we are extremely careful about who comes to our house. Being healthy is an absolute must--if you think you have a sniffle, don't come. Everyone removes shoes at the door and gets hand sanitizer.  Frequent handwashing is a must.  Naturally, no one who has not had the flu shot will be allowed to come to the house this year.  Since our pulmonologist has already said that Abby really can't go anywhere unnecessarily (meaning basically doctors' appointments), we are hopeful that we will be able to keep Abby's exposure to germs to a minimum.  It will certainly make things interesting around the holidays, but at least family members (who are healthy and who have had the flu shot) can come here to visit.

There have been a lot of plot twists since May, and most of them we would not have chosen. But what I am learning more and more each day is that God gives us grace for the moment and He knows Abby's entire story.  Since we can't skip ahead to see how the story ends, we are simply trusting that He will take care of our sweet girl that He loves more than Matt and I ever could.

Thursday, August 10, 2017

Today's Appointment

Here's me being wide awake at midnight because I drank too much caffeine today! 😳. I will pay for this tomorrow.

Abby's appointment went really well today!  Our surgeon was pleased with the progress of the wound using the wet-to-dry dressings, despite the failed skin graft.  Her wound has shrunk nearly a centimeter since surgery.  He really thinks that this method will be best for Abby, even though it is the longest and slowest of the options.  The curvature of Abby's spine fights everything else he has tried, so this is now our best chance.  It is going to take a while, but it will eventually close.  

I can't say enough about our surgeon.  He has been SO diligent and truly cares about Abby. He knows this has been a long road and he is not willing to put Abby through more surgeries without positive outcomes.  His goal is to keep her out of the hospital for a while, and we are hoping that too!  He really is a great guy!

So, my theory was proven correct yet again: when we pack to be admitted, we get to go home.  It's when we least expect to stay that it happens!  

My dad drove us today and we are so grateful!  I had to do 2 sets of Abby's treatments and a dose of meds in the car, so it is so very helpful if someone else drives!  Plus, I got to spend some quality time with my dad! 😍. Love that guy!

Tonight, we celebrated a good appointment and took advantage of the low heat and humidity with a walk on the boardwalk.  It has been cool enough in the evenings for Abby to be safely outside, so we all felt like we were breaking out of jail for a few hours!  We hid and found some Kindness Rocks and got some ice cream.  It was a wonderfully normal night!

This guy thinks that boat is his!  He inspired me to paint this rock tonight.

Sunday, August 6, 2017


Well, I've been reluctant to say this, but it's official now...Abby's skin graft failed.  We pretty much knew it had just a day or two after getting home, but it fell off completely last night, leaving us with no hope.  She has an appointment on Wednesday at CHOP, so I guess we will see what the next steps are then.

We were so hopeful that this would work, so it's a big let down.  We really aren't sure what we will do from here.  We are continuing with bandage changes 3x a day until we see him on Wednesday, but I'm guessing we will eventually try another graft.

Abby is also needing bipap much more these days.  Most days, we have to put her on twice a day.  She is still happy and playing, but she is starting to recognize much more than she is having trouble breathing.  Several times, she has asked me to check her breathing because she can't catch her breath.  I'm glad she's becoming more aware of her body, but I wish she weren't needing the bipap so much.

Nevertheless, we have had some fun.  It's been so nice outside that we have been able to spend some time on the deck in the evenings.  The other night, we played games outside while Chloe sunbathed in the grass.  :)

My mom gave Abby anew set of American Girl pajamas with a matching set for her doll.  They are so cute!  It's hard to find button-down shirtsleeved pajamas!

We are hanging in there. It hasn't been easy.  Abby still has so much spunk in her that it's hard to believe how much she has been struggling. 

Monday, July 31, 2017

On Our Way Home

We are on our way home after waiting most of the day for our surgeons to see us.  That didn't happen despite many emails and conversations.  It's frustrating and it feels like they are avoiding us.  We made an outpatient appointment in a few weeks when we already had other appointments scheduled, so now at least they have to see us.  

At any rate, we are thankful to go home, armed with new wound care supplies and 2 new respiratory machines.  Here's hoping we will STAY home for a while.  

Sunday, July 30, 2017

Sunday Funday

Today was our last day of hanging out until Abby gets her wound vac out tomorrow.  Matt will be here around lunch time to pick us up!

Today, Abby and I went for a walk around the gardens. It was such a beautiful day with low humidity that Abby could finally spend some time outside!

Abby was ecstatic to find 21 Kindness Project rocks in the garden!!!  We found one and started hunting until our bag was full!  

We brought them back to her room, added some embellishments, and Abby picked out her 3 favorites to keep. A little later, we rehid the rocks all around the outside of the hospital property--and found 3 more Kindness rocks!  It definitely brightened our day and we hope they brighten someone else's!  If you're not familiar with the Kindness Rocks movement, look it up on Facebook!  We have been painting and hiding rocks all summer in our county and it is SO much fun!  Painting rocks is so relaxing and therapeutic.  The kids have really enjoyed it too!