Jeremy Anderson

Jer writes: Elly didn’t sleep last night, so Rebecca didn’t sleep much either. My back has recovered enough that I felt I could sit for the afternoon with Elly to give Rebecca a break, so I made revolutions to leave the house and engaged our help network to secure transport to and from the hospital for Joshua and myself. I also tried my hands at baking cookies last night. Joshua and I were watching Arrival and I remembered a friend had gifted us a box of snickerdoodle cookie dough… The dough is tasty and the cookies would probably be awesome if I hadn’t sliced them too thin and/or baked them too long. “Cinnamon and sugar shoe leather” is how I described them to Rebecca. Not bad, not good. Perfectly “mid”? Let’s just say that Paul Hollywood will not be awarding me “Star Baker” anytime soon. The hospital remains stumped by Elly’s symptoms. We can tell they want to help, and they want to send us home, and they know that if they don’t provide us with an excellent team and set of supports and helps (such that Safety and Sleep are assured), we’ll be coming back far sooner than any of us want to. All that to say we’re not out of the woods. At the point, we’ve hacked a trail through the bramble and briar patches of negative tests, failed diagnoses, and the wrong medications to circle back to where we started… in the jungle, without a map. Please keep hope alive. Keep us in your thoughts and prayers. Keep sharing this campaign with your friends, family, and network contacts. We’re hopeful that one of these days, word of our struggle will reach someone who knows what this is and they will come forward with a correct diagnosis and a treatment that frees Elly from her torment and gives us all some much-needed shalom!

Rebecca writes: The days are kind of blending together now as we continue to wean off medications. We are trying to take walks, spend some time out of the hospital bed, and work on recovery. But the hyperkinetic episodes continue-sometimes better, sometimes worse. Doctors will ask for “how many an hour” and my answer is “which hour?”. It’s so variable, and you never know if it’s going to be a peaceful afternoon (like yesterday) or a rough one (like today). The good thing is that although getting to sleep is hard, once Elly falls asleep she is able to stay asleep until at least 7am. This is a big change and probably the thing helping us most right now. That and the support of both the hospital staff and the friends who have come to visit, to sit with Elly, bring her art supplies and cozy socks, and let me get mental breaks (and the occasional shower). Jer writes: My back is regaining its strength, tempting me to walk without the brace and the cane more often than not. Signs of progress for sure. These recoveries often come with setbacks (two steps forward, one step back) and unfortunately today saw me nursing my hip and using the cane more often than not. Gratefully, the rest of my back was still feeling closer to normal, so it should only be a matter of days before my hip follows suit (if I treat it right!). Elly’s progress in weaning off the meds is encouraging, but I also feel like it’s walking us back to Square One to some extent. After all, she wasn’t on meds when we brought her in over a month ago. The meds were given to her there, and we’ve spent a month trying pill after pill in pursuit of an effective therapy, seemingly to no avail (apart from ruling causes out) and often with painful or difficult side effects. Elly’s nutritionist gave us some advice and some custom supplements for her based on her latest DNA and cellular stress tests. We’re hoping the combination will help her regain a foundation of health and freedom from some accumulated toxins. We’re also increasingly eager for the Day of the Answer (in a Hitchhiker’s Guide to the Galaxy sense), where Deep Thought reveals to us the answer to the ultimate question of “life, the universe, and everything”… or, in our case, the root cause of whatever is awry in our baby girl. Keep praying, keep hoping, keep sharing, keep believing we will get to the bottom of this mystery, friends. Gratefully, Jer, Becca, Elly, and Josh

Rebecca writes: Sunday was a big day for showers and visiting. Elly was feeling well enough to get out of bed for a shower and a walk in the morning. Then we had our friend “K” come and sit with Elly for a bit while Rebecca got a chance to go home and shower and relax a little before heading back to the hospital. “M” came to visit with Elly and bring her fun activities to stay busy, and then our friend “T” drove Jer over for a visit as well. We are so blessed by the practical gift of time and gas! The biggest news is that reducing/eliminating some of the meds seems to have helped with sleep. She’s had two nights in a row of better rest, which makes it easier to manage the pain and stress of the hyperkinetic episodes. The episodes themselves seem to be reduced in severity as well. We are hopeful that the trend will continue. Jer writes: My back is slowly recovering. I did a bit too much yesterday, so I’m resting more and moving carefully today so the healing may continue. I’m also on Day 1 of “7 to 10 business days” waiting for my replacement glasses. I’m so grateful to have the help of friends for transport. It’s amazing how we disabled-but-generally-self-sufficient people take simple things like corrective lenses and the ability to get around for granted… We also heard from Elly’s long-time nutritionist and epigeneticist today about a DNA sample we sent off around five weeks ago. She identified a number of things that may be contributing factors which we will work with her to clear out of Elly’s system (the less stress on her cells and DNA the better!). We remain grateful for all of your support, your thoughts, hopes, and prayers. They are felt and are so precious to us. Stay tuned, friends, and please don’t hesitate to share Elly’s story!

Rebecca says: Update: Despite having another rough night of trying to sleep, today was a mostly good day. We are continuing to wean off of the meds and it’s good to see her more interested in things she likes. We got to go for a walk down to the Starbucks and a little balcony space for fresh air before lunch, which she was super happy about. Then we were transferred out of the PICU back to a general floor, this time in a quieter corner. The aim is to continue providing support while also getting her the most peaceful environment possible. We still have a CNA with us at all times and they are monitoring the frequency/intensity of episodes, and the resulting effects on her vital signs. We also will be getting support from pain management, rehab, PT/OT, and autism services to see what will actually be helpful to figure out these “hyperkinetic episodes” as they are referring to them now. Jeremy says: Having been laid up all week due to my back injury, I made it out of the house for the first time in several days today to visit the optometrist. I wasn’t expecting to leave the house today (except, perhaps, to give Rebecca a break if I was feeling well enough to drive), let alone visit the eye doctor… but the weld connecting the eye wire to the frame of my glasses broke as I was putting them on this morning. This pair was about a year past-due for a replacement, so their failure wasn’t exactly a surprise, but such a complete failure was not on my BINGO card for this week! The unfortunate reality is they estimate 7-10 days for my new pair to return from the lab. Until then, I may be able to drive familiar streets while wearing my computer vision prescription lenses, but it’s not advised. (I had a friend drive me to and from Costco today just to be safe, not only because of how sore my back still is).

Rebecca says: We are getting great care in the PICU, even if they are as stumped as the rest of the docs as to the cause of Elly’s condition. Right now we are working on weaning off some of the medications that had been tried and proved ineffective. Elly is feeling a bit more herself despite still being beset by constant episodes. She was finally able to get a few hours of sleep in the early morning hours after being up for about a day and a half. We are hoping for consults from pain management, PT/OT, and rehab today, as well as a chance to get out of the bed for a little walk outside now that she’s not heavily sedated. Our friend “A” came again to sit with Elly so Rebecca could go home for a quick shower and participate in a ministry meeting at church. We are so grateful for all the ways people are supporting us during this season! Jer says: My back is slowly regaining strength. Still a lot of pain and soreness. Given how long it’s taking to return to strength, I suspect I re-injured a lumbar disc (one that ruptured in a car accident years ago) in addition to straining the muscles with too many days and nights of bending over at the waist to support Elly during her events. As it is, I can walk slowly and carefully with a cane, and Joshua is able to take point on the chores around the house, and even rescue me when I get stuck somewhere. Standing or sitting for more than a few minutes is fatiguing. Lord willing — and if I can avoid the temptation to push myself and accidental re-injury — I’ll be free of the need for the cane in a few days. As always, we remain incredibly grateful for all of the love and support you all have shown towards our family during these times. We could not do this without you.

Rebecca says: Yesterday was full of tests. Elly was put under anesthesia and they did a contrast MRI, dental exam, and blood draws for a bunch of other work. Elly had difficulty getting to sleep and some of the medications they were using for event management started causing even more severe rebound events as they wore off, so the doctors were hesitant to use them anymore. As such, Elly has not slept all night. They made the decision to stay off the sedation and continue to reduce some of the meds. She has continued to have some episodes but they are less severe than the ones that were breaking through sedation. She's tired but looking more herself and has been writing a ton-pages and pages of words and drawings. I slept a little but am feeling pretty run down. Jer says: I seem to have aggravated an old lumbar disc injury with my attempts to tough through the onset of back pain on Saturday night… I was feeling unsafe to drive yesterday, so I could not relieve Rebecca even for the afternoon as I did Tuesday. I also had trouble just getting from the bed to the bathroom and back, even with a back brace on. Fortunately, Rebecca’s mother brought Joshua home in the evening and suggested I use his cane to help me ambulate. That has helped significantly, but my hips are still very tight and sore and transitions from laying to standing and back are dicey. (Even rolling from back to side and vice versa can be agonizing). So, sleep was fleeting for me as well, coming in 30 to 60 minute spurts, with only a couple blocks of 1-2 hours. I’m going to do my best to rest and focus on gentle movements while my body remembers how to move without pain. Being forced to the sidelines when I feel I’m needed most is such a glaring invitation to trust God to work in the arms, legs, hands, and feet of others on my behalf, for the benefit of my wife and daughter. I could be frustrated or angry about it — and I was (briefly) — but I’m choosing to let go of my right to wallow and instead to trust Him and to allow His Peace to reign in my heart. The alternative emotions (anger, frustration, fear, bitterness, etc.) that I am tempted to embrace would not help me heal any faster or produce anything good for Rebecca or Elly. As Paul wrote to the Phillipians: “Rejoice in the Lord always; again I will say, rejoice. Let your reasonableness be known to everyone. The Lord is at hand; do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus. “Finally, brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things. What you have learned and received and heard and seen in me—practice these things, and the God of peace will be with you.” I believe the Answers for Elly are coming. I believe healing is coming. I believe freedom from days spent in bed recuperating are coming. I believe leisurely walks to the park are coming. I believe life without chronic pain is being restored. Lord, may it be soon, for each and every one of us. Amen.

The ICU is definitely more intensive and more intense. So far, there seems to be more consistency (same people day over day and night over night) and urgency with the teams that are attending Elly. The neurologist attending Elly wasn’t happy with the buffet of medicines the other teams had stacked up for Elly and is actively reducing the things that clearly had no benefit (and may have exacerbated things) while suggesting alternatives. We’re happy with the reduction in meds overall, even if some of the replacements have had a list of concerning side-effects that they assure us are unlikely. (Un)fortunately, the med they were hoping would help Elly didn’t seem to, or had a paradoxical effect. About 30 minutes after she took it for the first time last night, her events really ramped up in frequency and intensity, going for sporadic, mild events to a cluster of intense ones. It took a host of pain meds and sedatives administered carefully over 3 hours to get Elly to finally fall asleep around midnight. Jer’s back unfortunately seized up Saturday night and has been slowly recovering since then. This has meant Rebecca has taken point for night watch (as sleeping on the pull-out hospital room bench-bed was part of the problem). Jer was able to strap on a back brace and give Rebecca a break yesterday afternoon and evening, trading places again for the night watch around 8PM. Please add your hopes and prayers for a swift recovery for Jer’s back to the list of our needs. Elly has a contrast MRI scheduled for this afternoon. If that leads to a diagnosis, and in turn to an effective treatment, Elly can come home sooner rather than later, and we can all finally get some sleep…

We were encouraged that Elly got more sleep on Sunday night than previous evenings but unfortunately the good news didn’t last. She had one of her worst episodes yet midmorning. Fortunately, multiple doctors were there to witness it and immediately called an RRT-rapid round table-to discuss what to do. They administered rescue meds but she didn’t improve, and the decision was made to move to the ICU where more could be done under closer supervision. They’ve kept her under light sedation this afternoon to place an EEG and let her rest. Tomorrow will be more testing. It was a really hard day, but we are hoping that this will finally get us moving in the right direction. - Rebecca