Dear family and friends,
Many apologies for being so delinquent in keeping you up to date with Eliza; things have been busy as Sam has started back to school, and it hasn't felt like there has been much to report. As I look back, though, on our last updates, I suppose there have been some significant changes worth sharing.
First of all, Sam's younger sister (and one of Eliza's godparents) Sylvia is now living with us to help care for Eliza. This has been a huge blessing, particularly to Luke and me, who have benefitted greatly from having someone to stay home with Eliza while we enjoy our usual outings to the park, to the museum, even just to the grocery store. Eliza, too, has benefitted from having another adult who loves her in the house: she is held more, and Sam and I are able to spend more quality time with her now that we're afforded small regular breaks from her care.
In addition, as we mentioned considering in our last email, we have made some changes to Eliza's medical care. Having long accepted that Eliza will not be cured in this life, we have made the gradual transition from agressive medical care to, as our hospice organization referred to it, "agressive comfort care." What this means is that we have carefully considered all of the medical treatments Eliza is receiving and have eliminated or decreased those of dubious worth that do not provide her any comfort. For example, during Eliza's waking hours, she is no longer connected to oxygen and oxygen/heart rate monitor. There have been no apparent negative consequences to this change and significant positive ones: "Eliza unplugged," as Sam has called her, is now able to be carried around the house, taken for walks with significantly less hassle, and held without restrictions due to the positioning of cords and tubes. Similarly, we have weaned or discontinued other medications and treatments with no apparent ill effects and much benefit to Eliza. From day one, we have made all our decisions prayerfully considering what is best for Eliza, and for the first time in a long time, we feel like we're finally acheiving that aim.
As for Eliza herself, it occurs to me that she is quite a different baby than she was when we last reported to you. Eliza does not--in fact, is apparently unable to--cry at all. In fact, it has been months since Eliza has cried even once. This change is not due to an increase in medical sedation; her doses of clonazepam (her sedative) have not been changed in a very long time. We can only attribute this change, then, to a continued worsening of her condition, which is also evidenced by an increase in her seizure activity. On average, I'd estimate that Eliza has four seizures an hour, lasting several minutes each. Some hours she has many more; others, particularly when she's sleeping, she may have fewer. The severity of her seizures has also increased. Seizures require a tremendous amount of energy, so Eliza appears exhausted most of the time, the curse of which is that the process of falling asleep and indeed even the state of being tired makes the brain more vulnerable to seizures. It seems a vicious cycle that we cannot break, and it can be heart-wrenching to watch, knowing that there is simply nothing we can do to help. As hard as they can to be watch, though, the doctors assure us that Eliza does not experience any pain or discomfort during the seizures.
Being so tired, then, as well as very sensitive to stimulation, Eliza spends a fair amount of time away from noise and activity. She rarely wakes up in the morning before 10, often as late as 11 or 11:30, and she is generally back upstairs in bed for a nap and a quiet evening/night by 4pm. During her time downstairs, Eliza is sometimes held (which she now clearly enjoys), at other times receives physical therapy or sits quietly in her cradle swing. It is not uncommon for her to snooze during those hours as well. As for feeding, Eliza is still hooked to her feeding pump from 4pm to 10am and still receives a special formula called Pregestimil, as this system is what she seems to tolerate best. Eliza does occasionally fuss a small amount, often in response to a simple discomfort such as hiccoughs or a dirty diaper, but never complains more than a little bit.
On the other hand, Eliza does smile daily now. Most, if not all (and this is the subject of constant debate), of her smiles are connected to seizures, but we have made the decision to take even these "smiling seizures" at face value (no pun intended) and just enjoy how cute Eliza really is. I have attached a photo that a friend who is a professional photographer took of Eliza about six weeks ago; if you'd like to see the rest of the wonderful pictures she took of our family, go to: http://www.pictage.com. The event title is Baby Eliza Jackson.
As for the rest of us, not much has changed. Sam is adjusting to being back at school, teaching and coaching soccer, and Luke and I are redeveloping a routine of playgroups and morning outings. Luke occasionally makes statements like, "I've never been to heaven; where is it?," or, "Soon Eliza will go to be with God," or, "Eliza had a few seizures today," but seems fully his happy-go-lucky chatterbox almost-three-year-old self as usual. We've begun teaching him to read, and he thoroughly enjoys card games like "Go Fish" and "Old Maid" ad infinitum. He's itching to get out on the soccer field with the boys on Sam's team, and has a pretty mean kick himself. He doesn't mind a few daily somersaults and loves to swim, too, both of which placate the diver in me. He has adjusted remarkably easily (as have we all, I might add) to having "Auntie Sylvia" here, and often remembers to thank her for staying home with Eliza so that we can go out to play. Auntie Sylvia considers it a small victory that she has discovered a candy that Luke actually enjoys--he's not big on sweets (or vegetables, fruit, meat...)--so we're all getting along just fine.
If you believe, then what utter insanity it is to question the Master Builder. With Jesus as the cornerstone, He is building us up into a glorious structure. If we live by things that are seen, it is hard to accept Eliza's condition. If we live by what is unseen, then we understand she is another of these personally crafted building blocks--a living stone, as Peter puts it. And what a precious and strong stone she is! Eliza, consecrated to God, beloved by him. All hail King Jesus, may His kindgom never cease.
Love,
us
