Wednesday, February 21, 2018

Sunshine!

We enjoyed some sunshine yesterday with some unseasonably warm temperatures.  It took a little convincing to get Abby outside for some real vitamin D (we have actually started giving her a supplement because she is outside so infrequently and her blood work showed her body wasn’t making it!).  Once she got out there, she loved it!





Since the tree house hadn’t been used in a while, I spent some time sweeping it out and cleaning it up.  I let out a little scream when I discovered a DEAD SQUIRREL behind the door!  Gross!  I was able to remove it with sticks without actually touching it, and then I lysoled the area really well.  Abby was very sad he died. My guess is that he got in there somehow and couldn’t get out.  Poor little guy.

Today is even warmer, and we are all looking forward to playing outside again after school.  We may even eat dinner on the deck!  I’m going to savor these warm days while I can!

Saturday, February 3, 2018

Germ-Free Blessing!!

My friend Katie is an amazing couponer and she gifted us 30 beautiful containers of Lysol wipes!  So much germ-free goodness!  We are so thankful for this blessing and will be sharing some with our friends at RMH when we take soda tabs in a few weeks!  



Monday, January 22, 2018

Nothing and Everything

Nothing has changed, and yet everything has changed. 

Abby is still healthy and able to do a full day of school at home with frequent breaks.  We are still washing are hands constantly, have hand sanitizer mounted on the wall at every entrance and at the door of her bedroom, and change our clothes the second we come home when we have been in close contact with people.  She is still skyping with her class most every day and able to interact some with the other students.  I am still dealing with the day to day insurance issues, medical phone calls, and specialists' appointments. 

And yet, it seemed like everything changed in that moment after Dr. C. said he felt the risk of putting the rod back in was too great.  I cried most of the way home and felt like I'd been sucker punched.  Caleb, who understands the magnitude of this decision, shed his share of tears as well.  Dr. C. didn't directly say that he would never do it, but it was clear that unless something significantly changed, he was not comfortable taking such a big risk.  We also know that a change in her health status that could warrant taking the risk could also mean she would not be stable enough to withstand such a major surgery.  It is such a difficult balance.

Her lung volumes were the same with or without the VEPTR rod, according to her CT scans.  We argued that functionally we see a major difference without the rod.  Regardless, those lung volumes are TINY and were measuring at about 10% of what they should be.  There's a margin of error with any of these tests, so that is consistent with her pulmonary function test putting her lung volume at 15%.  Translation:  the girl is in lung failure and we hate it.

While we were initially angry at being blindsided by this news, we also appreciate that Dr. C. recognizes the risks and isn't taking his decision lightly.  We know that he has studied her chart carefully and has really weighed the options.  We just wish there were more options.

A trach is no longer an option because of the fusion in her neck.  We confirmed that with her ENT a few weeks ago at her appointment, and it just isn't doable.  Now that this surgery is off the table, the only option we have left is to keep Abby as healthy as possible.  This means continuing to be on lockdown.

This is a tough way to live for a vibrant little girl who loves people.  She shed a lot of tears again tonight over missing school and hating her lungs.  In those moments, there's really nothing I can say except promise her that I am doing everything I can to get her healthy enough to go back to school.  But what we have been doing is proving not to be working.  Her lungs aren't improving and she is still in need of bipap support multiple times a day. 

We've considered going for a second opinion in Boston, but the truth of the matter is that Dr. C. is the #1 surgeon for difficult cases like Abby's.  We are pretty sure that if another surgeon looks at her file and sees that she was with Dr. C., he/she will defer to him.  Likewise, Dr. C. has very valid reasons for not wanting to do this and we would be devastated if we pushed to have the surgery and an infection became deadly.

So, for now, the plan is to keep Abby as healthy as possible and reassess her lung volumes with a CT in May.  She has a pulmonary appointment in February and we will see if she has anything to add, but right now we are "staying the course"...which is a course on which we would rather not be.

We appreciate your prayers and words of encouragement.  We are all hanging in there!

Wednesday, January 10, 2018

Not the News We Hoped For

Today did not go well. Dr. Campbell thinks putting the rod back in could disrupt everything and be too much of a risk of infection.  Her last 2 CTs show that her lung volumes are basically the same, so he feels she is stable.  We voiced our concern that she is not functionally the same, but he thinks the risks outweigh the benefits.  He wants to do another ct in May to measure lung volumes then.

This is all we know and we were completely blindsided.  The nurse practitioner was just as shocked as we were because she thought we were getting a date today too.  Turns out, we are going to be waiting even longer and she may not even have the surgery at all.  

We are devastated, to say the least.  This left us reeling.  We will pick up the pieces and keep going, but today we are heartbroken to hear this news.

Not the News We Hopes For

Today did not go well. Dr. Campbell thinks putting the rod back in could disrupt everything and be too much of a risk of infection.  Her last 2 CTs show that her lung volumes are basically the same, so he feels she is stable.  We voiced our concern that she is not functionally the same, but he thinks the risks outweigh the benefits.  He wants to do another ct in May to measure lung volumes then.

This is all we know and we were completely blindsided.  The nurse practitioner was just as shocked as we were because she thought we were getting a date today too.  Turns out, we are going to be waiting even longer and she may not even have the surgery at all.  

We are devastated, to say the least.  This left us reeling.  We will pick up the pieces and keep going, but today we are heartbroken to hear this news.

Tuesday, January 9, 2018

CHOP Day

Tomorrow, Abby has two appointments at CHOP.  We will see plastics first, then orthopedics.  If all goes well and her wound is officially cleared, we will get her next surgery date to put the VEPTR rod back in.  We are hopeful that this will be sooner than later!!  We would appreciate your prayers for wisdom of our surgical team, as this surgery will be even more complicated than usual.  The combination of Abby’s lung failure, scar tissue, and kyphosis make this surgery a challenge and we are very thankful that Dr. Campbell is willing to do it.  He doesn’t give up on kids and for that, we are so grateful.


A Letter to My Son

Dear Caleb,

11!  Wow!!  How in the world can I have an 11 year old?!?  This has been a big year of growth and experiences for you.  I love watching you mature into the young man God created you to be.


This last year, you have really come into your own.  You joined the Musical Theater Club and earned a speaking and singing part in The Little Mermaid.  I was so proud of you up there on that stage!  


This year, you are playing Lefeu in Beauty and the Beast and are doing such a great job.  It is fun to watch you develop as an actor and singer.  You absolutely love to sing and can often be heard belting show tunes from the basement.  In fact, as I type this, you are singing "Defy Gravity" from Wicked!

You're also doing a great job playing the trumpet and were chosen to be part of the All-County band this year.  You are following in your dad's footsteps!  Who knows--maybe you'll join the marching band in a few years!



You are still really enjoying fencing and being a part of a "team."  Your fencing group is made up of so many different ages and you really enjoy fencing a variety of ages and abilities.  I love that you have found a sport that you enjoy and is so unique.



 Ever since you were a baby, Daddy and I have prayed that you would love God.  We are so thankful that you have given your life to Him and that you have a passion for Christ.  Right now, you want to be a missionary when you grow up.  Even if you end up choosing a different career, there is no doubt in my mind that you will be sharing Christ with others in whatever you do.


Buddy, we are so thankful for the way you love your sister.  You have such a heart for her and it makes me smile when you two are together.  You know it's a special bond when you beg for a sleepover in her room every Friday night!  You are her fiercest protector and biggest cheerleader.  I know you worry about her, but you are her champion.


During your 11th year, I look forward to more musicals, band and chorus concerts, Star Wars conversations, and many more books read!  I love you Caleb!!  You are a great kid!

Love,
Momma