Dear Friends and Family,
Thank you for praying. Once again we’ve had a longer absence from writing than intended. Thankfully it’s mostly due to the business of “normal” life gradually returning. All is well here, praise God. Amos enjoyed a mostly uneventful second round of chemotherapy and Emily and I kept everyone safe and healthy while Will was away. He returned from his conferences in Atlanta last Friday night and we were all able to enjoy a week together at home before admitting at CHOC yesterday for chemo Round Rhree. I don’t know about you guys, but to me that last round went by so fast! I’ll recap a few things of note …
We are very, very thankful that Amos continues to do so well. He did have one fever – and a two night stay at CHOC – just after Round Two (while Will was in Atlanta), but it was because his counts were at their lowest so not unexpected. Overall, Amos is stronger and is progressing in many ways. We are so encouraged by this! Doctors and nurses continue to be impressed with his improvements and we are enjoying a much happier, engaged, and lively Amos these days. His initiative to volunteer to go outside, paging through books on his own again, and “playing puppy” imaginatively are all such a delight. Amos is getting to be a little boy again more and more.
We were blessed to spend Thanksgiving out of the hospital and enjoyed a lovely meal at Gigi and Grandpa’s. Luke was a gigantic fan of the pumpkin pie … and everything else! He eats like a prize fighter. We also were able to fit in another fishing trip at Dana Point Harbor with Gigi and Grandpa and friends, Lenny and Maria. What a surprise to actually catch some fish this time! Amos was sufficiently intrigued and commented that “it’s a bit … wiggly” as he beheld his own first catch. He managed to touch it with a hesitant fingertip so his inner fisherman is being slowly drawn out 🙂 We were thankful to have the opportunity to do something so normal together. (pictures below)
Another great improvement has been that Amos has also begun to walk a bit on his own. This is extremely exciting for us to see! He’s been pulling himself up on furniture and traveling very short distances over the last month but just this past week he’s been eager to try more. We’ve taken trips to the park where Amos has shown much boldness walking by himself on the grass. He’s gotten really comfortable in our house on the carpeted areas as well, where he’ll even stand up in place and start strolling (unevenly) here and there. We are very thankful to see him so willing to be on his feet again and independent. Please pray that this continues, safely, and improves!
Yesterday we checked into CHOC for chemo Round Three and Amos is doing well so far. He showed some reluctance when he had to leave the house yesterday but once he got to CHOC and saw how it had transformed into a Christmas Land, he was very A-Okay with the plan. He immediately completed a stack of Christmas crafts, took a tour of the decorated hall, and just this evening, he and Daddy got to go to a full-blown, Disney Christmas parade complete with characters straight off the Disneyland bus. Apparently Amos was especially excited to see Minnie Mouse … and not so excited to see Pluto (who was much, much too tall).
Another notable area of progress just today involves Amos’ tracheostomy, the artificial airway in his throat that has been there since July. His pulminologist stopped by just this afternoon to evaluate where things stand and we were shocked to see him recommend that we begin the decannulation process (i.e., taking the darn thing out). We are unsure of the time frame for taking the trach out, because it is a gradual process. But Amos successfully completed a significant first step: breathing on his own with a big red plug in the trach to block it completely. Essentially this forced him to breathe normally, without the “spare” airway of the trach (which is the whole point of a trach), and the fact that he can do that is a great sign. Amos also got a smaller gauge trach today, which will allow the hole in his neck to close up slightly and let more air through his windpipe around the trach itself when it is capped off. So although Amos is not yet swallowing reliably (just occasionally!), we learned today that he theoretically has enough control of his airway to breathe without the trach at all. In fact, immediately after his trach was capped, he and Will went to the Christmas parade downstairs for an hour (on foot) without any problems! This is a HUGE step for us and we are very hopeful that Amos can continue to move forward with the decannulation process. Please join us in praying for this.
We expect to be in the hospital through this Friday evening. Round Four is next: the LAST round. It’ss scheduled for December 22nd. We were a bit sad to see this conflicting with Christmas but we are hoping to move it up a day and be home by Christmas Eve. If not, we will celebrate anyways and rejoice in all the wonders of what the Lord has done. I have been thinking a lot about waiting – very much in line with this advent season. You might know by now that music is very helpful to me. Maybe it’s because I can turn it on and go about all that I need to do or because it actually sticks in my head and I find myself thinking about it through my days. I am most thankful for the new album from Rain for Roots, titled Waiting Songs. Buy this album for anyone and everyone. It is beautiful and hopeful and true. I have been very encouraged as we struggle in this waiting season. I could quote all of the songs here but this summarizes the album well:
Waiting Songs is an album of Advent. These songs are about making time for waiting. The King is coming and He is already here. So we practice listening, quieting ourselves, celebrating, whispering good news, and yelling shouts of joy. In the Rain for Roots family, we practice most of all by singing to ourselves, to each other, and to our children about true things. He is coming — the Joy of Every Longing Heart. Our longing hearts. Grown ups and children; we are the same in this. Through these songs, may God call us closer into conversation with Himself while we wait and hope with expectation. He comes to make His blessings flow far as the curse is found.
I am especially struck by that last line. This year I have tasted and seen the curse in ways I never imagined. What a challenge to be reminded of the promise that He comes to make his blessings flow … far as the curse is found. May we all know and cherish these things in our hearts as we celebrate King Jesus. And may we all learn to wait in joy and sorrow knowing that the outcome of all things is sure no matter what this world looks like today.
- For a smooth and uncomplicated (no infections or fevers) Round Three so that we’re all home on Friday
- For clarity regarding the timing of the removal of Amos’ trach
- For Amos to be able to sleep with clear and consistent breathing and oxygenation
- For Amos’ increased control of his mouth, tongue, and airway, and especially his swallowing to return in full
- For our family to cherish Advent well this year as we wait to celebrate the birth of the great Physician
- For wisdom as we continue to weigh many family decisions regarding 2016
Thank you for continuing to pray for our family. We are thankful for all of you.
Kelli, Will, Amos, and Luke
And now for some pictures … (click to enlarge)