Packing everything for five people for two weeks…
Anna and I sometimes hung out together as the “old people” while the others played.
What a gift to be able to meet a mother I’ve long admired from a distance and receive her gifts. Thank you for coming, Susanna.
Monday – 13 May, 2019
Checking in and enjoying his bare legs a little bit longer.
Dr. Nichols gets pretty silly. It’s almost like she likes children or something.
Dr. Nichols wrapping plaster in one of her snappy outfits and trying to keep plaster off her shirt since she was presenting at a conference later that day.
Dr. Nichols fixing up Daniel’s cast… child life volunteer helping distract Daniel from any fear and discomfort, other cast room team people being Dr. Nichols extra hands.
Dr. Nichols and Reenee (Physical Therapist) often repeat… “Behold the power of casting!”
He did it!
We made heavy use of this wagon. Daniel liked to drag a stick on the ground as we went.
Back in our room.
Thursday, 16 May, 2019
Scared of the saw, but cooperating.
Off comes the cast! Notice we had the bear match Daniel?
Fruit roll ups for the girls and cords for the little boy….
First casts coming off! Somebody should teach me how to do my hair better. Sometime when I’m not traveling.
Off come the first casts!
Wiggle, wiggle, wiggle! Most frequently used words of the physical therapist.
Change wasn’t very visible when the first casts came off.
Getting second casts.
Lying down and listening to music while they cast his feet first (and his knees second.)
Feet wrapped in plaster… and now fiberglass. Holding the form while it sets.
We put the first two sets of casts on in a sedation room, unsure whether he would need sedation in order to get through it. He didn’t… he was amazing and we used no sedation for any casts and moved to the regular cast room in the future.
Too bad it’s blurry… the whole team taking care of the man of honor.
Dr. Nichols is both fast paced and patient. She’s also very skilled and considerate of us as people. Worth the trip.
I was impressed with Daniel not panicking just from so many people in the room!
Daniel picked his colors each time!
Both of us sweating at the end of these casts and Daniel pulling his hair… some things are hard to do, even with everything set up to succeed. Daniel was really brave through it all, but it was hard.
It was quite warm. And Daniel was uncomfortable and fussy. And I was exhausted. Would like to visit the east coast with older kids and no medical treatment someday.
Finding a way to play in the dirt without getting dirt in his casts…
LOL – I have a picture like this that’s better of me, but… oh well! We visited Longwood Gardens and it was lovely, but I was too tired and Daniel too uncomfortable in the stroller for us to enjoy it.
Hanging out and watching lots of tv every night. I’m amazed they all slept well as sometimes I was up at night helping Daniel!
Daniel loved the kitchens… 2-3 microwaves and 2 ovens in each means LOTS OF CLOCKS!
Monday, 20 May 2019
Plugging ears and crying some as the saw cuts his cast.
The cast guy (he helped us multiple times, but I can’t remember his name!) took off his watch for Daniel to hold to help him have a good experience after crying from the scary cast saw.
The most fun of the day was the rice table!
Studying a club foot model.
Learning from a club foot model. I want one to study.
Reenee massaged and wiggled Daniel’s foot bones while Daniel played in rice happily.
His heel is not straight, but look… the sole of his foot is on the ground!!!!
Evaluating, stretching, supporting… this was our longest PT session while there. Was enamoured with his progress.
Daniel doing physical therapy and standing on a soft mat.
It was great for the girls to be given a little free rein in the PT room.
PT session wrapping up. Look at his knee sticking up!
Ronald McDonald House of Delaware…
We really appreciated the generous and delicious free food offerings at the Ronald McDonald House. It took a huge practical and financial burden off of us.
Poor Maggie felt like this more often than she liked.
Making boxed macaroni and cheese… while about six kinds of pasta are being served hot in the main area. 🙂
Mature, kind girls, all.
The doctor had an emergency surgery, so we hung out at the hospital for both lunch and dinner until she was available to put the third casts on. (Back to the rest of 20 May)
Daniel cried during this cast application… it was a long, late day. He recovered really quickly after getting his promised reward of a new cord! On this day, Carolyn decided to become a doctor after being silly with Daniel’s doctor… it may have involved shooting exam gloves across the room at each other.
The girls and Daniel all enjoyed decorating his casts. Look at how open his clubbed foot is!
It always did my heart good to see Daniel feeling good and walking and playing again after a few days of soreness from each new cast.
Our room at the Ronald McDonald house was about as organized as this wagon by this point.
Friday, 24 May 2019… surgery day! Surgery was scheduled for 12pm… then 1:30pm… finally started at 2:30pm. Daniel only had apple juice that morning, but he did great. I was running on fumes at this point, but hanging on, because I knew home was close.
At least there were cords everywhere.
The IV lady got his IV in the first try and then all there was to do was wait! Lots of waiting.
That’s me after laying my baby on the OR table. I felt good about walking him through all the hard stuff and that we’d survived until 2:30pm without food. Also, I knew how good I looked in scrubs.
BENDING KNEES! (in the OR, before surgery)
Look at his severely clubbed foot after the tenotomies!!!! That’s mighty straight and had only casting and minor surgery!
Foot with vertical talus post tenotomy… Doesn’t even look like his foot to me, but it looks beautiful!
Poor post-operative boy. Tired and disoriented and, as we learned, in some significant pain from ambitious stretching of his knees that the surgeon relieved by bivalving his casts the next morning.
25 May 2019 – Flying home. Left the Ronald McDonald House at 1pm and got home at 1am EST. My dad met me at the home airport and Brian had beds made and tucked us all in. We were up some with Daniel as he continued to be fussy from fatigue, disorientation and pain.
Struggling to be comfortable in the airplane…
On our first plane headed home. I’m glad to be done with that for now!
The day after surgery was rough. Partially because his legs and feet hurt from stretching. Partially because he was sleep deprived. Partially because we traveled from 1pm-1am. And partially because he was disoriented from narcotics. So glad to be home.
Daniel is doing well. It’s four days post surgery and pain is minimal now. He still complains as the tylenol wears off, but that’s all he has needed in order to function. I am glad we turned that corner and will learn how to live again, but with casts. We fly back for two days of appointments in three weeks to get braces for his feet… both AFOs and KAFOs. Still lots I don’t know, but I’m pleased with his care and progress. And relieved. Lots of relief to be home. I depleted every bit of adrenaline I posessed and made it through more than I thought I could. I can do a lot with a husband who believes in me and catches me when I get home. Resting and recouperating here. Glad to be through this.