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

An End of Winter Daybook

Outside my window... it is sunny but still chilly with the ever-present breeze. It has been a cold winter here. We just had a big rain and hail storm- finally! We’ve had about three good snows this winter but that doesn’t compare to rain for our parched land. I am thankful for... the love of friends this last week, especially our CC Community friends who have brought meals the last four nights and are helping take my kiddos places while I continue to recover from my emergency appendectomy! I’m getting there, still just very low energy. I am hoping for... a less eventful rest of our Lent! And for Jesse’s peace and joy as he finishes his time in the Air Force and begins his new position. On my mind... plans for the summer, including camps for each of the kids and some activities for Jesse and me. Noticing that... 1) Jude is working hard at being good, 2) John Paul is happiest when busy, 3) Mark is always going to like to stir things up, and 4) Mary is happy to be quite independent a lot of the time. A few plans for the month... Rest and recover. Begin Lenten observances anew.  Celebrate John Paul’s 10th birthday in Ft. Worth, as we do for that special one. From the bookshelves... Unhappily, I can no longer keep up well with what the older two are reading. I used to keep a running list. Happily, we’ve found Mark’s The Gospels for Children again and he and I are narrating though the second half of it. We are all reading The King of the Golden City together this Lent. Interestingly, it is Mary who keeps asking for another chapter. She loves the princess and King analogy. In the kitchen... a homemade “hamburger helper” dish and some roasted veggies made by a super healthy friend. Both smell wonderful and I am excited for dinner. Soon it will be the season for our CSA boxes again… I am creating... healthier expectations and restoring rhythms for myself, at least in my mind thus far. I really have to take the time to journal and take photographs regularly, to help me remember all we do and how rich our life is. I am going to start calendaring this. I’m also heading up our CC Yearbook, which we’ll be able to personalize for our kiddos, so I am excited to have a better plan for memory-making for my own children. On the Church calendar & in our home Church... it is St. Patrick’s Day! I read dePaola's Patrick: Patron Saint of Ireland with the littles and they watched this St. Patrick video. I love the CCC videos. I doubt I’ll bake bread this Feast of St. Joseph, which is Weds. I do plan to make a mason jar of purple slips of paper with specific suggestions for ways to think and act positively, since our sacrifice/fast is from complaining this year. And I still want to make a very simple Lenten desert scene with sand, dirt, & rocks for our table.

Fall & Beginning of the School Year Daybook

Outside my window... it is a cool, sunny Sunday. I am thankful for... the lazy family time we're enjoying this weekend, thanks to Mary being sick and the rest of us fighting it off. I can't remember the last time we all hung out at home all day. I am hoping for... continued peace & joy about our homeschooling path this year. We are enjoying our new schedule after a long spring & summer of researching, discerning, planning, & some experimenting. A big part of this year is Classical Conversations for us. We are commuting to a community 50 min away in Oklahoma! It is completely worth it and makes for a great day for us. It is very fun while adding a lot of desired structure for us and can serve as a springboard for so much work at home together. On my mind... Jesse's career and next position post-Air Force. He has options and we are so grateful, especially because it looks like God is opening doors for a non-traditional schedule in the near future. Noticing that... 1) Jude is growing up, picking up on adult things about the world & becoming increasingly more responsible, 2) John Paul is in the nine year old broody phase & loving playing soccer again, 3) Mark is loving "kindergarten" this year & playing his first season of soccer, and 4) Mary is her usual perceptive & precocious self, doing her best to keep up with her brothers. A few plans for the month... October will begin with Mary's hernia repair surgery in Ft. Worth. Then, we have two fun trips: Jesse & the boys will finally go on a Father/Son Camp Out again and we will all finally go on our long-awaited Big Bend trip with Mimi. From the bookshelves... Mary is learning her letter names & sounds with Elizabeth Foss' Alphabet Path. Mark is learning to read with Little Stories for Little Folks from CHC. (I really love most of their early elementary stuff and am using a lot of it with the littles this year.) The older two & I have enjoyed re-visiting Redwall this month as part of our Brave Writer language arts curriculum. We're using old copies of BW's "The Arrow" covering some of their favorite books for a fun source of copy work & dictation material, as well as a springboard for our discussions of writing & literary devices. They are each using a different math curriculum this year, still Saxon for one and Oak Meadow for the other. (If I had to use one accredited curriculum to appease my state or my husband- which I don't in either case- I think I would use Oak Meadow. I love their project-based yet still challenging curriculum.) In the kitchen... is our last CSA box of this season, including fresh black-eyed peas that Jesse cooked with bacon as part of dinner last night. I am creating... a healthier me by working out regularly, although my back is really hurting again this weekend for the first time in a few months. I completed my first sprint triathlon a couple weekends ago! The cycling has been a God-send for my back and helps it to feel so much better & stronger. I am also part of a new team at our parish working to create & publish our parish newsletter. On the Church calendar & in our home Church... October will bring some favorite feast days including the feasts of St. Francis and St. Jude. We will host our Catholic Home School Group's meeting on Our Lady of the Rosary so I have some planning to do for that... We will mostly read about, possibly over tea time, these saints on their days and include them in our prayers, asking their intercession. Fridays we focus on catechism lessons this year, although we try to really pray together every day. The older boys are doing Faith & Life on-line and that has been a great choice for them to help keep it more interesting & fun. Mark is narrating his way through The Gospels for Children and Mary has her own little My First Catechism, both published by Ignatius.

From St. (Padre Pio) Pius of Pietrelcina on his feast day...

Calm yourself and be quite certain that [the] shadows are not a punishment proportioned to your wickedness. You are not wicked, nor are you blinded by your own malice....What is this painful searching for God... which occupies you heart so incessantly? It is the effect of the love which draws you and the love which impels you.