Sunday, October 4, 2015
Eleni, 7 Months
This month baby is photographed on Maker available at Fat Quarter Shop! Watch this space for a giveaway soon.
Let's start with my gratitude for your kind concern this September. We are home from the hospital now... for the second time in two weeks. Eleni has had some sort of virus for about three weeks now. In retrospect she started showing signs before we departed for Chicago. I wasn't sure what was going on until she really crashed one night and we had to take her to the ER. Things go from "maybe" to "bad" so fast with her! We spent two nights in the Chicago hospital, caught our flight home and then ended up back in the hospital in our hometown less than a week later. This last time we were discharged with oxygen, which Eleni has continued to need every night and sometimes during the day over the last week.
Yep, we have so many machines in our house, and now oxygen, plus state-funded nursing in the home a few days a week. It feels like everything but the doctors! I'm thankful that these things allow us to be home, but discouraged to need them so.
I'm not sure what progress to share for Eleni this month. Her ABM lessons in Chicago with Marcy held so much potential, but Eleni was unwell through half of them and missed several entirely due to hospitalization. She's really been sick since then, often feverish, rashes coming and going and having frequent muscle tension fits, which are similar to a seizure. When she's feeling poorly, her muscles are extra tight, discouraging movement. I guess progress is too much to hope for given these challenges.
Oh, and we missed our appointment with Dr. Zelinsky, the optometrist we see in Chicago who told us to do the spinning. I was so looking forward to seeing Dr. Zelinksy again, but alas.. the hospital. After skyping with the Dr. last week, we've been using her special prism glasses in a new configuration.
I've been meaning to show these to you. You can see from the side that the glass has a thicker part and a thinner part. The glasses are prisms that bend the light as it enters the brain through the retinas. We rotate the prisms in the frame, as instructed by the doctor, to effect her brain in different ways. Dr. Zelinsky, who specializes in recovery from brain injury, uses prisms to stimulate non-image related visual functions. Light coming through the retinas programs the brain in a variety of ways, effecting circadian rhythm, balance, digestion, hormones and more. Although Eleni's brain understands little to no central or peripheral vision, her retinas are still taking in light. We hope that by stimulating the non-image related visual functions, her entire brain health, and eventually her vision, will be improved.
Well, friends, September was not a good month for our family. I know I started it off with a negative attitude, frustrated to mark the halfway point of Eleni's first year with so little gained. It was painful to "celebrate" my birthday and to fail again and again at attempts to have fun as a family, as a couple, as an individual. We went hiking in the mountains for my birthday. Eleni wore this sherpa hat I made for her before she was born. Before.
In September we also had appointments with neurology and developmental pediatrics, both of which I dreaded for months in advance. As it turned out, neither appointment was as traumatic as I anticipated. Sure, both doctors had little positive to say about Eleni's prognosis, but I was prepared for that. Neither made dire predictions, like that she'll never walk or talk or eat, but they didn't have to say it. At seven months old now, she still cannot roll over, cannot sustain her head off the ground at tummy time, has never smiled, does not track objects, does not use her hands, has never eaten anything by mouth, makes very few sounds, etc., etc. It doesn't take a doctor to raise a monster red flag here.
Please forgive me for bringing the sad, but I'm feeling the need lately to make sure people know how poor her prognosis really is. It's devastating to be in this position as a parent, truly devastating. All to often well-meaning folks offer encouraging words that reveal their lack of appreciation for how serious Eleni's disabilities are likely to be. I appreciate the sentiment, I do! But, it's rather stomach churning to come to grips over and over again with our lurching reality. And to do it feeling alone, without the company of those well-meaning folks, who get to move on with their day rosy glasses firmly in place.
No one wants to be the dasher of rosy glasses. In fact, I've considered donning a pair of my own. But the stakes are too high. I need to be in touch with reality in order to help my family.
Lately I've been thinking more about how to take care of myself and the other members of my family in our day-to-day struggle. This turning away from focusing everything on Eleni was inevitable, as it was never sustainable, but it does feel like a miniature giving up. It really is. There are simply not enough resources (mainly of my time) to go around, because Eleni's needs are so astronomical. To help anyone else, is to help her a little bit less. No matter what it breaks my heart.
This weekend South Carolina is seeing a record amount of rain. Flooding and mayhem reigns. An ominous thud signaled the sound of a large tree falling, uprooted in soggy soil, just minutes ago as I typed. Our little pond usually nestles far out of sight, behind that line of trees. It's risen over ten feet, fully into the pasture over soft, safe grass. Like only children can Aria and Liam defied the chaos, took their kick boards out to the pasture and had a rousing good time. I think it's that childish ability to live in the moment that I need most to survive all this. The future is not rosy. The tragedy is real and the silver lining so extraordinarily thin. If there is anything, anyway to enjoy the now, that is where I need to be.