Thank you for your continued prayers. April has passed by quickly but not without leaving us feeling like we’ve accomplished a good deal. I think my favorite thing about this month has been seeing Amos and Luke grow in their relationship as brothers. Luke is talking up a storm, and he’s very social and interested in everything Amos does. Luke is also a little bit on the rough-and-tumble side of toddlerhood, which did not pair well when Amos was more fragile a few months back. Now though, it seems like they’ve evened out a bit in awareness of how to play together and Amos’ strength and agility has increased to make him more capable of the rough-and-tumble life, for which Luke is very grateful. One example is a recent favorite activity: Pillow Mountain. This is the game where the boys collect all the pillows off the couches (including cushions) and stack them up, then go rollicking through them together, wrestling and laughing. They are so dear and I am thankful for them daily. It’s such a gift to see them able to spend time together in such normal ways.
Our days still revolve around Amos’ therapy schedule. We are at CHOC at least four days a week and other appointments elsewhere amount to at least one appointment every day of the week. It’s exhausting but I think the boys are the premier champions of this schedule. They endure car seats, waiting rooms, doctors offices, packed lunches, and missed naps with a willingness that is more gracious than my own at times. We have come to appreciate so many things about this strange life we lead. Primarily, the people we get to see each day and the small moments where we can pause to enjoy one another sustain us in surprising ways. True, we get to the end of the week and there’s more than one tired grump in the house, but we are learning to be thankful in the midst of our weariness. Though it’s not easy!
So much of our life right now is so unlike anything I would have ever imagined. The path that the Lord has laid out for us is hard but filled with glimpses of His grace. I had the chance to attend a women’s conference last weekend and the speaker, Nancy Guthrie, no stranger to suffering herself, spoke so beautifully about these verses from Romans 11.
33 Oh, the depth of the riches and wisdom and knowledge of God! How unsearchable are his judgments and how inscrutable his ways!
34 “For who has known the mind of the Lord,
or who has been his counselor?”
35 “Or who has given a gift to him
that he might be repaid?”
36 For from him and through him and to him are all things. To him be glory forever. Amen.
What has stuck in my head this past week is the part from verse 33 about the depths of wisdom and the unsearchable ways of our God. There are so many things that I can’t ever know about why our life, and Amos’ life, has taken this turn. But I can rest in the knowledge that Amos’ heavenly Father is unbelievably wise. His ways are inscrutable! He holds all of us in his hands and he walks before us on this strange new path. It’s good to find rest in these things.
Speaking of rest, April has been pretty devoid of sleep for Will and me. Amos has struggled with two colds over the past month and although Amos has managed to sleep fairly well, it’s greatly interfered with restful nights for mommy and daddy. We are up attending to unhappy machines, suctioning Amos’ trach, double-checking oxygen levels, etc. etc. Being congested and having a trach is a very undesirable combination! Thankfully, Amos is on the mend now but please pray for continued improvement in his respiratory system overall. The strength of his airway, throat, and tongue seem to be all interconnected and integral to having the trach removed for good. They are all steadily improving (you should have seen Amos licking his popsicle tonight!), but there is plenty of room for more.
Touching on some of the things from our last update:
- Eyes- We saw Amos’ neuro ophthalmologist this week to follow up on his eye surgery and she was pleased! His eyes have not turned back inwards- which is a HUGE praise! However, Amos’ right eye is now slightly turned out, of all things. This is probably due to the fact that he still prefers to use his left eye, and possible over-correction during surgery. Fixing this could require loosening the outer muscle of the eye ever so slightly via another surgery, or he could work those muscles over the next 6 weeks and not require intervention. We’ll continue patching and see what happens! In other news though, his eyesight is fabulous! He is 20/30-20/40 in each eye!
- Visas- we still have nothing to report on this front. Please pray! It’s really wearisome not to know what lies ahead for us over the next 5 months. All of our logistics depend on this, among other things.
- Trach – Amos is doing really well with his swallowing and we are hoping to repeat a swallow study in May. Depending on those results, we’ll look at repeating the sleep study and go from there deciding what to do about removing the trach.
Overall, Amos is doing SO WELL. His eyes look great and seem to have helped him improve his balance even over the last week. His interest and curiosity, verbal skills, and expressions are all improving. Physically he’s seeming more confident and independent. He and Luke have taken to playing hide and seek when we are at home. This is great because it entails lots of walking for Amos! They also love to play “batting practice” with our little tee and whiffle balls. It’s great too because Amos gets a good core workout swinging the bat and throwing balls. Outside the house, I have two very enthusiastic grocery shoppers! Amos will walk all through the grocery store (sometimes with a miniature cart), eager to pick out what’s next on the list. The only problem with this plan is that now Luke wants to do the same thing…(of course!)… this afternoon he leaned out of the cart and snagged a bottle of wine. Thankfully he held onto it, but it’s not the first thing to end up in our cart that’s not on the list (and I think that addition stayed…)
Thank you for your continued prayers and encouragement. We are thankful.
Kelli, Will, Amos, and Luke
Some pictures from this month!