Dear Friends and Family,
We are enjoying some delightfully ordinary times of late. Just yesterday we woke up to the sound of Amos happily calling for “Mommy!” through the monitor. Will and I went back and forth over who had to get up and go get him and I was the lucky one who got to stay in bed for an extra few minutes. The morning unfolded as we made coffee and the boys had peanut butter toast and green smoothies. Zazzy and Grandpop zipped in to say goodbye before heading home to Philadelphia after a wonderful week together, and a few minutes later Will headed out the door to do some work for the morning.
The boys and I got the laundry started and Amos and I worked on his letters and numbers while mixing in some tricky hand-eye coordination “games”. Luke got into everything until I finally gave in and we walked to the park to work out some wiggles. We found ourselves back home around lunchtime in need of food and baths. Amos made quick work of his sausages and eggs (Who doesn’t like brunch on the weekend!?) and I tossed both boys into the tub. I can happily say that I had to shampoo two little heads today and, oh, what a joy it was! Amos’ hair has really started sprouting fast in the last ten days 🙂
We spent the afternoon attending a cooking class as a family, hosted by the Maxlove Project. It was so much fun to be together and to watch Amos literally run with excitement towards the kitchen. I think I have a budding chef on my hands here! Together we learned about fierce foods that fight cancer, how to make yummy crackers, guacamole, and pizza. All the foods we made were nutrient dense, sugar free, gluten free, low carb, and TASTY! I can’t say enough about the helpful resources this group has offered to us as we’ve seen Amos thrive on a whole foods, sugar free, gluten free, and low carb diet. It was also a delight to see Amos wolf down a huge pile of guacamole, crackers, and three pieces of pizza. This little man can EAT and boy is it fun to watch him enjoy each little bite.
And now for a few updates on how things are going and what lies ahead for the next week or so… Amos is doing really well and we are thankful. His hair is growing back in (quickly, even!) and his strength is returning in practically every area. We have had a busy few weeks of appointments and guests. I got away for a girls weekend away with college roommates – Kim and Bethany- and it was such a sweet time! And Will’s parents got to spend a week helping out and enjoying some of the California sunshine.
In our last update we mentioned that Amos was about to begin wearing a patch over his left eye for 6 hours each day. Well, thank you for praying because Amos has been doing a fantastic job without any complaints at all. We were a bit nervous that this would be a battle but it’s been so encouraging to see Amos cope just fine. We have another eye appointment coming up this week to discuss surgery options further, but we are hoping that Amos’ eyes will have strengthened even in this fiirst week of patching.
Amos does have an important appointment tomorrow (today, if you’re reading this Monday morning!). When we met with the respiratory team after the sleep study, they recommended that Amos see the Ear/Nose/Throat specialist at CHOC to take a look inside his airway and make sure there are no abnormalities or obstructions. Will and I are really curious about this appointment because it could provide some answers regarding the poor results of the sleep study as well as some irregularities that we’ve seen ourselves with Amos’ breathing in general. Please pray that tomorrow’s appointment would shed some favorable light on the nagging respiratory issues that we have been seeing, particularly during our nights. As we’ve said before, countless hours of our sleep have been lost over the past eight months due to the questions and nagging issues that surround Amos’ trach and overall respiratory situation. We long to see an end to the questions about sleep apnea/obstructive apnea and we especially want Amos to be able to safely breathe on his own without the trach. Please join us in praying for swift and even easy explanations for these things.
Thank you!! We appreciate your love and support. In all of these things, we know that the Lord continues to lead and guide as we contemplate so many things. What a blessing to know that He is control and that He knows all the things that we don’t.
And now for some pictures!