Summer Highlights Daybook

It’s ...
triple-digit hot outside but I am on our shaded front porch because even when I oversleep the morning cool, I still need to get outside. #catethegreat is napping in her crib in our room.
Also outside...
Dragonflies are abundant this summer and I’m seeing so many of their beautiful double-winged bodies on our property in the blue & green variety.

From the bookshelves...
Mary & I recently finished Hellen Keller from the Childhood of Famous Americans series.  I remember enjoying Florence Nightingale in that series myself and we enjoyed reading this one and talking about our Cate so much.
With my hands...
I’m sipping iced coffee and typing, resisting the urge for another Chessmen with it. I’ve baked a lot of chocolate chip cookie bars lately for our school faculty, Mary’s class for her recent birthday, and the football team but Chessmen are my good & easy go-to for afternoon coffee time cookie, “biscuit” as it would be called on the Great British Baking Show. :)  

Since I'm thinking about food, here's a pic of this summer's seafood feast with My Cowboy.

In my head...
I’m musing on a podcast I recently discovered: Emily P. Freeman’s “The Next Right Thing.” So. Good. Leaves me feeling peaceful and inspired. And empowered. A new favorite of mine, to add to Danielle Bean’s weekly “Girlfriends” and Leah Darrrow’s less frequent “Do Something Beautiful.” (Such a good one recently on integrating faith & psychology! Need to remind My Cowboy to listen to it.)  I’m adding all Emily’s books to my reading list.
On my heart...
Lately? Constantly. How to love Cate and everyone else, beginning with myself, better.  More truly, more resiliently. More humanly. I know with God’s grace that love expands and multiplies to meet the needs. My downfall is still in not trusting enough to slow down and recognize my own needs before I feel desperately overstretched.
Clinging to Christ by the “Little Way” of Cate’s middle-name patroness Therese has become a source of insight and grace in my days again. More on that another time.
#catethegreat update...
She has finally been fitted for her wheelchair seat and back! It was an impressive process involving measurements then vacuum-packing her in two beanbag-type pillows which were 3-D scanned and uploaded right in front of us. A 3-D model will be made from images and her seat/back supports from the model. Her first wheelchair, a manual one, should be ready in about a month. I’m trusting we’ll be ready for it ourselves by then.  

Below is the Montessori space I set up for her this summer, an IKEA trip and my project while M&M were at The Pines.

Recent road trip adventure...
We went to OK City one Sunday this month. It was too hot.  Kids were grumpy.  Parents got that way too.  We visited the cemetery where Bl. Stanley Rother is currently buried- all but his heart which remains in Guatemala.  We prayed there for Cate's healing.  We saw JP’s (and all of ours!) good friend who recently relocated for lunch at his job. We bought a new set of steak knives at a popular kitchen goods store we don’t have at home.

Outside the chapel where Bl. Stanley Rother is interred.  Lake Nocona pic above was our early summer weekend adventure thanks to some friends' sharing their lake house.  Port A vacation still to come this Labor Day weekend...

Quote of the month:
From James Bryan Smith, interviewed on “The Next Right Thing” podcast-
“I am one in whom Christ dwells and delights. I live in the strong and unshakable Kingdom of God. The Kingdom is not in trouble and neither am I.”
It reminds me of St. Teresa of Avila's-
“And all will be well...”. I recently read that her deeper conversion happened at 39! I’m only 42- there’s hope for me yet!!

Our Lady of the Grasshopper!?

The Little House series devotee inside me found this historical article fascinating and such a real testament of faith.   Article here about a German-American farming community saved from a plague of grasshoppers by the intercession of the Blessed Mother, Our Lady of the Grasshoppers. And I’m glad to know it’s source even exists- the International Marian Research Institute at (Catholic) University of Dayton (Ohio).  Happy Feast of Our Lady’s Assumption!

Cate’s Trip to Pittsburgh: Final Post-op Visit

Cate's last follow-up appointment today went well!  The esteemed doctor was pleased with how much her cornea has already cleared.  She remains such a rare case, he called in all his residents, fellows, and a “visiting observer physician” to see her eye at her final visit.  Lots of instructions for her "local" (DFW) treatment until I bring her back here in 2 months!  Baby glasses with patch therapy and plenty of eye drops in our near future.  I have nothing but good things to say about Children's Hospital-UPittMedCenter but JP & I are excited to head home with our precious patient! I can’t begin to describe what great company, comfort, and help our fine young man has been to me these past two weeks.

Cate’s Trip to Pittsburgh- Part 4: Post-Op

Cate is recovering well!  Her Easter Sunday follow up appointment was blessedly uneventful.  Her cornea is continuing to clear and more of her pupil is becoming visible.  No signs of infection or retinal detachment.  She’ll be fitted for baby glasses/goggles this week and will transition to a contact back home.  The esteemed Doctor wants to remain her primary care provider, evaluating her and making long term decisions for her care.  Our closer but not local pedi opthomologist in DFW will monitor her vision progress and pressure rates (watching for glaucoma).  We’ll be coming back to Pittsburgh in about six weeks for another round of tests and exams to determine the long term success of her surgery and potential for vision.  Then, we’ll be back about every six months, at least in the beginning.

Cate’s Trip to Pittsburgh- Part 3: Cate’s Surgery

The day before Cate’s surgery was a day off from appointments and John Paul’s 14th birthday.  We went to the movies & dinner to celebrate.  The closest theatre is also a hip retro theatre that serves alcohol, including craft beers, and has a club of supporters who choose a weekly theme for shows.  The week’s theme was early Tom Cruise movies (or as they put it “Tom Cruise before Oprah’s Couch- YouTube it if you’re curious, we did).  The afternoon show was his fantasy flop “Legend.”  JP decided that although he enjoys fantasy books, he does not like fantasy movies.  It was just funny for me to see TC so young again.  We were lucky and won a dinner gift certificate from RMcDH for the night.  Just one of the many extra, fun things they set up for guests to try to make a stressful experience more tolerable, even somewhat joyful for families.  Our dinner was at a great Italian restaurant in the Station Square area with red-checkered tablecloths and served family style.  Our
$30 appetizer and incredible tiramisu dessert were included and it was still a family oriented enough place that the wait staff sang “Happy Birthday” to JP.

Anyway, Cate’s surgery- an EUA (Exam Under Anesthesia) & Lensectomy+Reconstruction
Her surgery was on Holy Thursday.  JP was allowed to come back to get her ready with me.  We ended up giving her the dilation drops in her eyes because she would relax with us rather than scream and squeeze her eyes tightly shut as she did for the nurse and anesthesia resident.  The anesthesiologist was a Texan and proud to tell us so.  It took about two hours once she left us.  We tracked her from pre-op to surgery to recovery by a number on the waiting room monitors.  When we reached close to two hours, I started feeling stressed but just then a surgical liaison came out to tell us things were fine and wrapping up.  One of the best things about this hospital was is their constant, effective communication with patients.  Our esteemed doctor came just behind her.  He said it took longer than he expected as well because things weren’t quite as easy as he’d hoped but had ultimately gone well.  Her L eye looked good under exam.  He had seen the posterior part of both eyes for the first time and found additional malformation in her R posterior eye.  Her optic nerve didn’t form properly.  This means her chances of good/normal vision in that eye, even repaired, are greatly decreased to probably 20/100–20/200.  He removed her lens, cut the vessels that needed to retract, and had to work her cornea back in place.  It didn’t move back on its own like the iris.  For this reason, she’ll have more corneal clouding before it clears.  Her pupil looked good and did not have to be enlarged as expected.  He told us that had she been left another few weeks, the pressure in that eye would have caused her to lose her vision and likely the eye.

She took another hour to wake up, nursed on one side, then fell asleep before finally nursing on the other.  The doctor had warned us she’d be sore and grumpy and she was until getting more Tylenol, which we kept in her all that night and the next day as well.  Thanks to residual anesthesia she slept all night.  Her check up the next morning, Good Friday, went  well.  A Fellow under our esteemed doctor came in and commented on how unique and interesting her case is.   They took off the pad & shield from surgery, examined her eye, and gave her her first drops.  She has three types and gets some as many as four times a day.  I requested another shield when they asked because she had been rubbing her eye/head on our shoulders the night after the procedure.  The doctor said he wants to monitor her through Friday, to watch for infection, retinal detachment, etc. and may need to perform another procedure but probably not.

Cate’s Trip to Pittsburgh- Part 2: We Meet the Doctor

We saw the esteemed Dr. the morning of our second full day here.  The Eye Clinic is a busy place and he was running behind but that worked out best for us.  Cate was napping and would not wake up for the technician to put in the dilation drops.  She would do the opposite thing needed and screw her eyes tightly shut.  The Dr. came in briefly.  He is originally from England with a hint of a British accent and a big, happy personality- very comfortable with his office team and my screaming infant.  We finally got the drops in and Cate also got her nap in while the drops worked on her eyes.  (Eye drops will become a recurring theme for us.) The Dr. finally examined her and, after doing an ultrasound of her eye, diagnosed her with PFV not Peters Anomaly!  He said this was “good news.”  He said it looked like PA initially but the “membranous bodies” (seen but not identified by the pedi opthomologist at home) in the posterior part of her eye were the key- blood vessels.  PFV or persistent fetal vasculature is a condition where developing blood vessels didn’t recede as usual & necessary.  The resulting increased pressure in the eye pushed all the anterior parts of her eye together   (cornea/iris/lens) and created her congenital corneal opacity.  The Dr. said this is very rare and that he’d only seen seven of these cases in his career, whereas he’s done over a thousand cornea transplants.  This changed his plan for her surgery.  Rather than simply remove the adhered/diseased cells of the cornea/iris, the Dr. said he would need to permanently remove her lens, cut the veins, hope everything moved back into place, and possibly enlarge her pupil.  He said he was “so happy” we brought Cate to him because her condition is so rare.

Cate’s Trip to Pittsburgh- Part 1: We Arrive

It took all day Sunday to get to Pittsburgh and through today to settle into the Ronald McDonald House.  We drove to Dallas, flew into Pitt, and rented a car to drive into the city.  Coming out of Ft. Pitt Tunnel into view of all the big steel bridges of this city was impressive.  University of Pittsburgh Medical Center is an amazing, inspiring place.  Our RMcDH is attached to the Children’s Hospital.  Signs say it is one of the Top10 children’s hospitals in the nation.  I learned from a historical mural/timeline that some famous favorites of mine are from Pittsburgh: Mary Cassat & Jimmy Stewart, as well as some children’s medicine innovators.  Mr. Yuk was created here!  RMcD House is a special place and we have felt so welcomed and supported from our first moments inside.  Meals are even prepared daily by volunteer groups.  Cate was a great little traveler and JP has been a huge help hefting our bags and installing her car seat, etc.  My back is holding up.

Today was her VEP (Visual Evoked Potential) Test, one of the reasons we came here.  Basically, they put electrodes on her head to measure her brain’s response to light.   Knowing how much light is reaching her brain through her problem eye will help determine the urgency of her treatment.  As I’ve learned, the critical window for the brain development/neural connections associated with infant eyes is through three months.  Her results are being read tonight in England and will be part of Dr. Nischal’s (himself originally from England but he fled socialized medicine) exam & consultation tomorrow. Cate tolerated the first half of the  test well but started crying & even cried herself to sleep in my lap during the latter parts.  The lights were intense and I looked away myself.  I’m taking pics but not able to add them from my phone, so I plan to add them from home later.

Interesting read...

Why French Women Are Quitting the Pill

Fall 2017 Quick Takes

• Eldest started high school this year.  The first time I saw this (for-the-yearbook) pic, it made me cry.   Where did those 15 years and my baby boy go?  Who thought my gentle philosopher would become a football player and we, a football family?

• This is all we saw of OKC martyr Fr. Stanley Rother's Beatification Mass (and what was streamed live on EWTN).  Still a blessed pilgrimage day for our family as we attempted to get in- he was praying for us.

• Miss MMQC played her first season of soccer with a team half made up of girls from school.  She loved it and is tough- gets up quickly when she's knocked down, which is often because she's tiny.  Samantha came with us to many practices and games.  I love that she's far more into dolls than I ever was.  Each of the kids have played at least a year or so of soccer, it's our starter team sport because it is so great for their gross motor skills.  And fun.

• Elvis and Mary for Halloween.  Their choices.  This picture with them each striking a pose is telling of their dramatic personalities- also a surprise, as in don't know where that came from!

Little Joys of Spring

Home Brew Party