It all started with a small bump on his forehead...

Two days ago I (Brittany) noticed Kaleb had a new bump on his forehead. It seemed to be some kind of swelling and since the doctors have advised us to look out for that (in case of brain swelling), I called his pediatrician at Boston Children’s. They asked me to come in, so I towed myself and all three kids to his primary care doctor, which turned into a trip across the hospital lobby to the ER (which was packed) so Kaleb could get an MRI to check to make sure it wasn’t swelling or bleeding of his brain. Todd came to our rescue at dinnertime with coffee, food, and fun. I took the kids home to bed and Todd stayed with Kaleb until midnight for the MRI (which, thankfully, came back all clear). We’re all a little tired (to put it mildly).

Lung Update

The pulmonary team at Boston Children’s is hard at work trying to figure out the best way forward to determine what is going on in Kaleb’s lungs. His CT scan revealed haziness throughout his lungs which could mean a number of things including interstitial lung disease, pneumonia, or aspiration. The answer they’re leaning toward at this point is that the haziness is due to excess fluid in his lungs from his aspirations of his saliva and spit up.

In the midst of the craziness yesterday I got a message from Kaleb's cardio team saying that they talked with pulmonary and would like to advance his NG feeding tube from his stomach into his small intestine (NJ) to try to limit his spitting up so that they can see if it helps improve the state of his lungs. It seems like this would be the least invasive way of trying to determine whether he has lung disease or simply a lot of fluid in his lungs or something altogether different. This change will mean he’ll be on a continuous feed for 20 hours a day (I.e. more wires and less mobility).

If it works well he will probably get a GJ tube (port in small intestine) put in instead of a G tube (port in stomach) next month. We’re very grateful they’ve determined a path forward to try to help his lungs and hopefully get him off continuous oxygen.

Early Intervention

Yesterday morning we had two representatives come evaluate Kaleb’s development. They had encouraging things to say about his communicative, social, and cognitive development (he measures average on all of those, which his worker said is amazing given his life experiences so far). They said the area they are going to focus on is his mobility (movement of his hands, feet, head). We’ll soon determine how often Leslie, his assigned therapist, will come over to work with him. I’m very grateful and excited for this! Especially because in our first conversation I found out Leslie is a believer who is a member of a healthy church in downtown Boston. Such a gift to have another fellow believer to fellowship with and care for Kaleb!

How Are We?

Pretty overwhelmed at the moment. We keep swinging between trying to chart out a new normal way of life and getting things interrupted by hospital visits that take out most of our day (which at this point, I guess, is becoming part of the new normal). Zion and River continue to be a delightful force of life and fun…and mess and noise and chaos and love and joy, adding to the existing chaos of caring for Kaleb. I’m finding it extremely challenging to stay on top of everything from Kaleb’s new nebulizer treatment to keeping him off his back to feeding the kids and containing the trouble River is always into (think: baby raccoon status) to making sure Kaleb doesn’t spit up while on his back to cultivating Zion’s budding imagination and creativity, etc. etc. etc. Meanwhile Todd is trying to stay on top of his work with GCC and the church while caring for me, playing with the kids, help with care for Kaleb, etc.

It occurred to me this morning that if Todd and I go through this season mainly focusing on the things we wish the other was doing we will be ungrateful and discouraged. But if we choose to focus on all the things the other is doing our hearts will be filled with gratefulness and joy. And I realized it’s very similar with the Lord. I could focus on all the things I lack and need in this season or choose to focus on all the good gifts and graces God is providing the days are MUCH more enjoyable. That’s our hearts desire and to that end we pray.

Church

We are currently working our way through the gospel of Matthew, Shawn and the leadership team decided it would be good slow down through the beatitudes and take them one at a time. Man, has it has been rich! The preaching of the Word has greatly landed on the church building us up into Christ. Check out this sermon on Matthew 5:5 (and others) “Blessed are the meek, for they shall inherit the earth”.

Upcoming Appointments:

• Friday, Feb 14 - NJ tube procedure

• Wednesday, Feb 19 - Echo and follow-up with our cardiologist

• Thursday, Feb 20 - Center for Airway Disorders evaluation

• Friday, Feb 21 - Abdomen ultrasound (to look at his liver which had some calcification on it in previous imaging)

Please Pray:

• For wisdom to navigate what we should give our limited time and energy to each day.

• For continued joyful perseverance through this season.

• For God to continue to build us into our sweet church as we seek to transition from crisis mode to maintenance mode.

• For opportunities to be a light and testimony to all the lost people we interact with at the hospital.

• For God to heal Kaleb of all his diseases.

• For the salvation of our children.

** 100% of your giving goes to us. If you use churchcenter app do not click to give on mobile, you don’t need to setup a churchcenter account. The best way is on a desktop or laptop.