Many of you have been following the adventures of our family for years and years. We are moving to a blog format. Please click the “Follow” button in the right-hand sidebar, and you will continue to get these updates in an email like you did before. You’ll never know how much it means to us to have you by our sides as we walk the path that God laid out for us before we even had any idea what was ahead for us.
We’ll use this first post to update you on the happenings in our house. First, the kids.
They are all doing great right now, for the most part. We now have eight teenagers in our home, so life stays even more exciting than it was before. Yikes! Seriously, though, they are all amazingly good kids who pitch in to keep the machinery of our lives running smoothly. Almost always, they even do this without being asked. We honestly couldn’t make this life work without the great attitudes, the hard work, and the love and commitment of each of the kids.
There are a few medical updates. Some of you know that Jaden was scheduled for another spine surgery in August. Unfortunately, that has been rescheduled now for November 6. We’ll post updates here as that gets closer. He has grown and is doing so well after his traumatic year last year. He has continued building up the strength in his arms and trunk, which will help him go far as he works around his lower-limb paralysis. Check out those biceps! 🙂 And be jealous.
Lilyan has continued to settle in and do so well with her new family. We really have never seen a child adjust so quickly and smoothly. She’s the most genuinely joyful and contented child we’ve ever met. That really is not an exaggeration. We’ve completed most of her initial evaluations, and every doctor who has seen her — every test she’s had done — has confirmed what we already suspected. She has many severe disabilities and trunk deformities, and a very long road ahead of her. Our spine surgeon has chosen to hold off on any surgeries for now, tentatively planning to begin this work sometime next year. In addition to her obvious (and already known-to-us) medical challenges, though, she also suffers from horribly debilitating headaches. These come on very suddenly and leave her unable to do anything but lie flat or in our arms and suck her thumb — often with tears coursing down her little cheeks — until they pass. Each headache lasts anywhere from thirty minutes to three and a half hours, and we have found no pattern to when they occur. They don’t seem to be food-, sleep-, stress-, or environmentally-related. She might have two in a day, two or three in a week, or she might go as long as ten days without any before one hits her again. She’s been through quite a few tests as doctors continue looking for the cause of these headaches. We have more tests and appointments scheduled, and we will also continue to keep you posted here about what we learn. We would cherish prayers for answers. It’s heartbreaking to watch her suffer like this. Enjoy some of the pictures of this joyful little one. You will see in a couple of these just what a change comes over her when her headaches hit.
Kathryn has remained fairly stable for quite a while now, although her neurologist did just recently decide to increase her anti-seizure medication a bit, based on the results of her latest blood test to check her medication levels. Our biggest concern for her right now is her continued, unexplained weight gain. No one can figure out what’s causing her weight to increase so consistently in spite of a healthy diet. This makes it so much harder for her to work toward independence in the areas where this is a possibility for her, and it’s very hard for all of us as her caretakers. We will be consulting with the endocrinology department at Cincinnati Children’s and we would also be so grateful for prayers as we look for answers for her, too.
Ian is still struggling with constant severe ear infections in spite of multiple surgeries on his ear, but we do think that they are finally lessening in frequency. We will keep seeing his ear surgeon once a month and pray for full healing eventually.
The other kids all remain healthy and stable medically, and we’re thankful for that.
We will all be busy from now until the holidays preparing for National Adoption Awareness presentations during the month of November. This is always such a special month for us, and we love any opportunity to advocate for adoption. This year, Meghan (who is now eighteen!) will be sharing her story and talking about what adoption has meant to her. We’ll post more about those dates and locations as we near the month of November.
Scott and I are both doing well, but sometimes we do struggle with the grueling appointment schedule required to keep all of the kids healthy and keep everyone involved in their care abreast of any changes. We always appreciate prayers for strength, patience, wisdom, perseverance, and a faith that knows deep at a heart level that God is the Source of these things for us.
That’s about it for now. It’s our goal to post short, more frequent updates to this blog. If you’d like to follow these, be sure to click on the “Follow” button to the right.