I am so proud of my boy! Today, we received the news that Caleb is a 2018 Carson Scholarship winner!!! He has earned a scholarship to college (at age 11!) and will attend a special awards ceremony where he will hear Dr. Ben Carson speak! This is a really great honor and we are thrilled for him! I know I have a great kid, but it's nice when others notice it too.
During the application process, Caleb had to list his community service, share grade reports, and write an essay. I feel strongly that kids should do their own writing (it's the teacher in me!) I asked him some questions to get him thinking and helped with typing, but these words are 100% his. I love how his voice shines through in it! Below is what he wrote.
“The more that you read, the more things you will know.The more that you learn, the more places you
will go.”--Dr. Seuss
Share something that
you learned from reading.What were you
reading and what was the lesson learned?
The book Wonder by R.J.
Polacio is a story that our whole fifth grade class read.It’s about a boy named Auggie with
Treacher-Collins Syndrome.Children with
this syndrome are born without cheekbones, which affects many areas of their
face.Auggie has facial deformities and
has had 27 surgeries to help him hear, see, breathe without a trach, and eat
without a feeding tube.
Because Auggie looks different from
other kids, he is teased, bullied, and left out.However, by the end of the book, Auggie has
taught the students in his school what it means to show kindness to
Auggie has an English teacher named
Mr. Browne who shares a precept every month with the class.The first precept is, “If you have a choice
between being right and being kind, choose kind.”This precept has challenged me to “choose
kind” in my life.
There is a student in my class who
makes it hard to “choose kind” because he has not been very nice to me.Recently, I have decided to “choose kind” by
continuing to be a friend to him even when he isn’t to me.Since I began to intentionally “choose kind,”
I’ve noticed that he hasn’t been picking on me.We even got along well when we were working together on an
assignment.By “choosing kind,” I might
even be making a new friend!
My best friends were creating a
club that would exclude others, and it made me feel like they were doing the
same thing that other kids were doing to us!I was really upset and after talking with my mom, I went back the next
day and talked to my friends about Wonder.I reminded them that Mr. Browne’s first
precept is to “choose kind,” and I told them that I didn’t think having this
exclusive club was a way to “choose kind.”Thankfully, my friends understood what I was saying and realized that
this was not a very good idea.We
decided not to form the club.Now, we
just play together and with whoever is around.
Reading Wonder has
encouraged me to speak up for students who may be different from others and
anyone who is being bullied or left out.Some students in my school with special needs joined us for P.E. last
year and sometimes made noises to show that they were excited or happy.Some students would try to mimic these noises
and make fun of the students with special needs.I would always tell them to stop, but they
wouldn’t listen.Now, I can refer to Wonder
and remind them to “choose kind.”Since my sister Abby has
Cerebrocostomandibular Syndrome and also looks different from other kids, I
hope that Wonder encourages them to “choose kind” to Abby and others
has really impacted my life and the way I think about others.I know I will remember the lesson I learned
from Auggie and Mr. Browne for a very long time!
Today is Rare Disease Day, where all of the orphan diseases come together to raise awareness for Rare Disease. While these individual diseases are quite uncommon, one in ten diseases is actually considered rare! Abby's is one of the rarest, with Cerebrocostomandibular Syndrome only affecting approximately 10 people in the world!
But what is Rare Disease for us?
Rare disease is a toy zebra hiding among feeding bags, syringes, and cans of Pediasure.
It means fighting with insurance to get essential services deemed medically necessary.
Being rare means having to become the expert on your daughter's condition, because no one else is.
It is feeding pumps, ventilators, pulse oximeters, and oxygen tanks crowding a little girl's room.
Rare disease means frequent phone calls to doctors, nurses, case managers, and supply companies.
It is scars that tell the story of battles won.
Having a rare disease means isolation and loneliness because of the threat of germs.
It means spending nearly two years of your young life in the hospital.
Being rare means 31 surgeries before you turn 7.
It is nebulizers, cough assists, and inhalers.
Rare disease means struggling to breathe after walking up the stairs.
It means celebrating improvements in lung volumes, even if those lung volumes are still far from what they should be.
Having a rare disease means giving her brother big hugs, not knowing when she will see him again.
It is staying with family members while your parents and sister are at the hospital...again.
Rare disease is discovering a group of friends who understand you better than anyone else, even though you've never met them in real life.
It is having a a huge support network who pray for and encourage your family constantly.
Being rare means becoming an even tighter-knit family who loves and supports each other.
It's thankfulness for the little things that really aren't so little, when you think about it.
Thank you all for being so supportive of our family. We love you!
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!
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!
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!
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.