Dear Friends and Family,
Happy New Year! It’s hard to believe that Christmas has passed and we are already 4 days into 2016. It’s been a joyous, peaceful, and busy end to 2015. Thank you for all of the ways in which you’ve rejoiced with us through the last round of chemotherapy and into Christmas. We are blessed by all the ways that so many of you reached out through words of encouragement, prayers, visits, etc.! Thank you.
This past week has been a good one. The boys have enjoyed their new toys a’plenty and we’ve enjoyed being home together. Amos has been tired and sluggish as we expected at this point in his “cycle,” but as of today – day 17 of a 21 day chemo cycle – we haven’t had to admit for fevers as with every previous round. It would be such a treat if Amos didn’t have an infection this last round! But we know that there’s still time. Nevertheless we are hopeful and encouraged. We’ll have labs drawn tomorrow that will likely tell us which direction we are headed.
There’s been some very encouraging progress that we’ve seen from Amos in these last weeks. Most significantly, his swallowing has improved tremendously!! Even in the last few days, we’ve seen an amazing improvement. Part of Amos’ feeding therapy homework involves different things to stimulate his mouth and swallowing muscles. One of them is taking spoonfuls of juice or water and trying to consistently swallow. Yesterday he must have swallowed twenty spoonfuls in a row of orange juice!! This is fantastic as it means that Amos is beginning to swallow more regularly and intentionally. We’ve also seen a huge reduction in our need to suction his mouth. Instead of regular mouth suctioning with a little machine like “Mr. Thirsty” at the dentist’s office, we’ve been asking him to swallow the saliva that pools in his mouth and he’s doing it. It’s as if something has really “clicked” and he and his muscles are remembering how to do this very important task. We are so excited and thankful!! Just a few weeks ago it seemed that we were making such slow progress on this front despite so many months of praying for it. The Lord is answering! Pray for continued improvement here!
On Wednesday, Amos will have his first feeding/swallowing therapy appointment since mid-December, so we’re eager to hear what might be in store considering the progress that he’s making. Amos is beginning to notice and desire food and that seems like a really good sign even though it might present new challenges. For instance, he burst into tears the other morning because I gave Luke a muffin and he wanted one too. Or this morning, I fed him his breakfast through his tummy tube as usual and he remarked afterwards that he “hadn’t eaten anything all day”. We are thankful to see his awareness of these things grow and we hope to channel the frustration we see into motivation to work hard. Thankfully, we can give him things like lolly-pops, but he is (delightfully) less and less consoled with them!
Last week Amos met with a pediatric ophthalmologist who had some really good things to say about Amos’ eyes. As far as we can tell right now, he is seeing with both eyes and doesn’t need glasses. The cross-eyed effect (which must be so frustrating for him!) is due to the inner muscles of the eye recovering better and stronger than his outer muscles. Corrective measures can be taken in time, but for now we were advised to wait and see how much his outer eye muscles will recover on their own. We’ll be seeing another vision specialist later this month to get her opinion as well. Our goal is to have his vision addressed as soon as we can.
Also coming up this week is Amos’ followup MRI scan, which will show us his whole spine and brain. Obviously it is a very important scan and although we do not expect any complications or negative results, please pray for the “all clear.” We’ll update later this weekend to let you know how things unfold. For now we know that each day is about helping Amos grow stronger and tackle rehab full on. He’s really never been able to devote himself to just rehab, so we are hopeful and thankful to be at this stage. We are especially excited to see him grow in his strength and energy.
Please continue to pray for Amos and for us. He is growing more and more aware of all that’s going on around him and his reactions are getting stronger for better and for worse. We are seeing mood swings and tantrums and even a few episodes of passing out because he was so upset by getting his port accessed, a trach change, or just a simple bath. Please pray for us as we seek to help Amos with all of these different experiences and emotions, to discipline him and show him grace. Please pray that we would be patient and understanding as that’s not always easy (we are too often grumpy and impatient ourselves!). Please pray that we would know how to motivate and encourage him. That some semblance of normal family life would begin to develop as we look ahead towards better and stronger days for Amos and less time at the hospital for all of us. Please also pray that Amos would be cancer free for all of his days and that he would know the Lord’s faithful care in all of these things.
And now for some pictures!