Another Virus & Another Admittance

I had already written out the below update, and then we had yet another trip to the emergency department and subsequent admission to the ACCU at Boston Children’s. The kids and I have had RSV this past week. Kaleb’s at the virus’ peak right now and his oxygen levels were dropping a concerning amount this morning, so we had to take him in. They’re going to monitor him overnight and make sure he’s stable before sending him home.

This admission is particularly discouraging because we tried really hard to give kaleb the care he needed in order to avoid yet another trip to the hospital. But God had better plans.

MRI Update

For the first time we were able to say “goodbye” to a specialist! Kaleb’s spinal MRI revealed he does not have any evidence of a tethered spinal cord (which would’ve needed a surgery to fix). This means we will focus on physical therapy through appointments (which he’s now having twice a week through Boston Children’s and Early Intervention) and daily practice to develop his neck, back, and core muscles. It’s amazing to see him responding so well to these workouts. We also try to have a feeding session (three spoonfuls of puree) once a day in addition to his morning and evening meds and breathing treatments. Needless to say, life is full!

Important things coming up for kaleb:

• Kaleb’s BIRTHDAY! - October 3

• Swallow Study (rescheduled) - October 21

• CT scan - October 29

Zion and River are SO busy these days. They’ve finally learned how to play together and spend most mornings and afternoons in imaginative play. Zion has begun “preschool” at home. We’re learning letters & numbers, writing and reading, and sprinkling some science and art in here and there.

Sickness

The kids and I have been sick with our first virus (RSV) this cold & flu season. The harsh reality that we’re entering into another sickness season (with a BANG I might add) is honestly pretty daunting. We had a wonderful summer and we’re grateful for all of the community activities we were able to join in on without much thought to sickness. But now we begin again the season of constant decision making—when do we avoid catching sickness from others in CG, church, children’s ministry, parties, etc. and when do we take the risk in order to stay involved in community? When do we stick it out caring for kaleb at home and when do we take kaleb in to the hospital for care we can’t give him? When do we take our family on adventures and when should we stay home and rest for kaleb’s sake? Todd and I are really feeling the weight of our need for wisdom in the coming months.

The reality we’re dealing with is that if and when Kaleb gets sick it depletes the little reserve his body has, it’s detrimental to him developmentally (he’s not able to do his therapies), and it puts a lot of strain on all of us (being on alert at all times), there’s also always a good chance he’ll end up in the hospital, which is not helpful for his development or our hearts.

Kaleb’s lungs aren’t doing great right now and we’re not sure why. I’ve started carrying oxygen around with us again (to use when he falls asleep), which tells me he’s deteriorated a bit. We’re hoping to get this CT Scan so his pulmonologist can continue to try to get to the bottom of his continued need for breathing support, but he has to be sickness-free for a month before anesthesia considers it safe to administer anesthesia to him for the CT. Would you pray for us that we’re able to remain sickness free until his CT scan on October 29?

I’ve said this before but just want to reiterate that we share all of these details with you not to draw sympathy or attention to us but instead:

• To give you an insight into the variety of challenges that any parent with a medically compromised child faces.

• So you know how to pray (we NEED your prayers!)

• So that your prayers will result in praise when we see God answer yet again in His loving faithfulness.

Marriage

I know a lot of you pray for our marriage, so I wanted to thank you because Todd and I have been enjoying a really sweet season of unity in our marriage recently. I think the murder of Charlie Kirk and the current turmoil of our country has given us much to talk about, pray about, and process together. And it’s made both of us so grateful for each other.

Please Pray:

• For healing and strengthening for Kaleb, and for a short hospital stay

• For emotional strength for Zion and River (it always hits them hard when he’s admitted)

• For wisdom for Todd and I this cold & flu season

• For kaleb to remain healthy for the next 4 weeks

• For salvation for Mike & Val, our neighbors. We’ve had some really sweet relationship-building interactions recently and they’re very invested in how Kaleb’s doing (we seriously have the best neighbors). Todd and I are actively looking for opportunities to share the gospel with them and we would love prayer for God to provide those opportunities!

• Todd’s recently been presented with a number of open doors into deeper conversations with strangers, neighbors, and family recently in the context of talking about and processing the life and death of Charlie Kirk. We have faith that the Lord is using this tragedy for good in His kingdom. We are praying for gospel-clarity and gospel-courage to shine in and among His people and that God would bring about many conversions, many lives recommitted to the Lord, and much lasting fruit from this.