One Month at Home

Thursday April 29 marked one month home from the hospital, and what a month it has been. If you merely skim this blog post, please scroll down below to watch the video of THOMAS WALKING INDEPENDENTLY!

The older I get, the more I see a good and full life is very much mixed with sorrows and challenges. Life on this side of the veil is decidedly three-dimensional and multifaceted . . . and yet we still see through a glass darkly until we are finally (we hope) in God's presence.

Over the course of the week, we experienced medical mysteries and worries plus additional tests. We experienced triumphs in Thomas's recovery. We laid to rest Chris' brother Tim, which brought such sadness to our family, while we simultaneously visited with extended family, renewed old relationships, and felt joy.

Traveling to Atlanta

Chris and I would never have planned to travel with Thomas only a month after he was discharged from the hospital and still very medically complex. However, we consulted with his doctors (who were hesitant), ran a couple of tests this week to check certain levels of things before we ventured from from our home hospital, and I held on to the last minute to the possibility prudence of staying home. As it was, we went, no health problems occurred, and we made it home.

How does she do it all? She totally doesn't! I had to halt what minimal schooling we are doing in order to juggle the medical appointments, therapies, a day spent on the phone ordering Thomas's medical supplies and medications early (since we'd be out of town), and then packing up. I'm very grateful for having now three kids who can help me pack. For example, I assigned the 10-year-old to select all items for the three-year-old, lay them out for me, and I'd simply review them and stuff them in his backpack. Voila.

Chris and the oldest four attended the evening wake, but I knew the littlest boys (particularly Thomas) would need to be in bed earlier than that, so we stayed back at the hotel, ate dinner in the hotel restaurant, and tucked in early.

The extended family was so moved by how many people attended the wake and funeral Mass. I particularly reflected on how much Dottie (Grandmom who passed away nine months ago) would have loved the Mass.

Thomas "came alive" getting to visit with so many adults, which reminded me of his old self before the hospital stay. Even during his four months (six rounds) of chemo, Thomas just loved to chat it up and tell jokes to adults.

After the lovely reception at the German restaurant, the family gathered back at Pop-Pop's house for reconnection. Of course, Thomas asked for an art table to be set up . . .

Thomas's story is illustrated, "The dinosaur ate the person." All my children have gone through the phase of writing everything perfectly backwards, so it doesn't faze me. 

Eleven of the twelve cousins, ages 3 to ~22

Cousins with their parents and grandfather
(R.I.P. Uncle Tim and Grandmom)

Physical Therapy Progress

This week was one of Thomas growing in desire for independence, which is a needful step in recovery. He has become more and more capable of dressing himself, but still didn't want to: This week, he began insisting on doing his own dressing! 

He also began "dressing like a man" again. This little boy during ages three and four insisted on "dressing like a man," as he called it. He daily wore what the rest of us would consider church clothes! He eschewed jeans, sweatpants, any kind of short-sleeved shirt, and even a polo shirt was too casual to wear around the house (so I stopped buying any of those and just bought him church clothes). Therefore, it was a dramatic shift when he laid naked in PICU for two months (graduating to a hospital gown only when he moved to the Oncology floor) because--and I didn't know this--when kids are that close to death, they actually cannot even safely be covered with a blanket or gown because of how closely their bodies must be watched for signs of trouble. Over the latter two and a half months in the hospital, Thomas graduated to wearing baggy sweatpants and tee-shirts for comfort, but I knew that really wasn't Thomas's preference. Back at home for weeks, he has still had to wear very baggy clothing as he learns how to move again. 

Thus it gave me a tickle of joy to watch this week as Thomas began asking if he could "dress like a man" again, digging through his clothing, and asking, "How would a gentleman dress?" He still requires looseness around his abdomen, so I even ordered him some church pants with elastic waistbands. All glory to God for allowing Thomas's personality to return

In this week alone, Thomas went from climbing up the stairs on all fours to climbing up them with his legs straight (see video) . . . and today he walked up them holding onto the rail (but I have no video yet).

This week, our PT goal had been to start having Thomas use his walker more often (versus the wheelchair) in order to be independent . . . but Thomas decided simply to start walking! We were in Atlanta for the funeral, when on Saturday morning at the hotel, Thomas announced that he just wanted to try walking on his own.

AND OFF HE WENT!

After walking around the hotel room, we drove to Pop-Pop's house where Thomas walked around the house independently (with one of us shadowing him for safety!) for about an hour! Back at home, I listened to him on Sunday morning singing songs to himself about, "Walking, walking . . . I love my walking!"

Thomas is enjoying the back yard in this beautiful spring weather, both for relaxation . . . 

Thanks to KM for giving these hammocks to our kids!

. . . and getting back onto the swing for the first time!

Medical Updates

Thomas is having a better week eating food by mouth, but I'm coming to understand that this journey will be a very long one.

Our sweet boy still retches nightly, often up to four times a day, sometimes more, sometimes fewer. We would call it vomiting, but his reconstructed anatomy prevents him from actually vomiting up food. In short, our little guy has been vomiting multiple times daily for about four months. My tubie-mom readers and gastric surgery readers are saying, "Welcome to my world." Chris and I do much analysis weekly as we look over Thomas's charts to try to find patterns and causes.

This coming week was going to be the first week since discharge when we did not have any medical appointments outside the home (only therapies in the home) . . . but that milestone will have to wait because a 90-minute Cortrosyn Stimulation Test has been scheduled, based on cortisol labs last week. It is possible that Thomas's remaining adrenal gland is still recovering (hasn't "woken up" yet) or that it was actually damaged by low blood profusion at the time when so many of his other internal organs were damaged.

That said, our schedule is slowing down, which makes this the perfect week for No More Meals! Our amazing, generous, sacrificial community provided us meals during chemo weeks for four months and then since Thomas entered the hospital five and a half months ago. We have received hundreds of meals, for which we can never truly repay. (However, I will try.) Now, I learn to get back on that bicycle!

Miscellaneous Moments from the Week

Church last Sunday

Thomas seems to need to make art to process everything. He will be watching a television show and then call out, "Get me my paper and pens!" Then he starts drawing what he sees. His sister paid him a dollar and he immediately went to the table and drew a copy front and back. He draws everything. What does God have in store for this mind someday?

Thomas singing "On Top of Spaghetti" . . . 

Another week, another puzzle completed by the family! Thomas did almost 100% of this one because he banished us from helping him. 

Thanks to the R family for giving Thomas this puzzle!

Please accept our deep thanks to everyone who donated to the Levine Children's Hospital toy and art drive in honor of Thomas! The drive is now closed and below is a picture of the mountain of goodies at the home of our neighbor who organized the drive! Besides this, $175 was donated and is being used to purchase a whole lot of art supplies and craft kits! All of this will be delivered to the sick children at the hospital this week.

Please continue to pray for Beckett Weinert (whom you can follow over at Instagram). His family belongs to our parish and he is in the very same PICU where Thomas was, being cared for all the same beloved doctors and nurses, and he is in desperate need. God placed him into the perfect family for him.