When Paul and I were newly married, the church we attended had a Men's Backpacking Trip. My father had been to the place where they were headed before, and he told the guys, who were starting to tire out, "It's just across this meadow and over that ridge."
Over and over and over.
And so the term, "Gene miles" was born. It refers to anything that turns out to be farther or more difficult than we expected at the beginning.
Eight months ago yesterday, Paul talked me off the ledge when I was panicked in a hotel room in Nanchang, Jiangxi. "Just bring him home; we'll figure it out," he assured me.
Across this meadow and over that ridge.
So we brought Luke home and took him to the doctor, who ordered some testing so we could figure out what was up with him. Bloodwork, urine sample.
Across this meadow and over that ridge.
"Hmm, nothing too weird in the lab results, take him to Berger Rehab for an assessment and see what they say."
Across this meadow and over that ridge.
"Okay, so he's profoundly delayed. Let's send you to The MIND Institute and see what they think it is."
Across this meadow and over that ridge.
The MIND Institute said, "He's not autistic, although he's "at risk" for an autism diagnosis in the future, because the criteria changes as kids get older."
And the doctor said, "Well, let's try a pediatric neurologist. Maybe he can figure it out."
Across this meadow and over that ridge.
And the pediatric neurologist shook his head at us and ordered an EEG and an MRI and more bloodwork.
Across this meadow and over that ridge.
Once all the results were in, we were no closer to an answer than before. Finally, he suggested that we go to UCSF Genetics and see if they can help us.
So yesterday, exactly 8 months after Luke was placed in my arms, Paul and Brianna drove him to San Francisco to see what they had to say.
The team came up with a 3 tier approach to additional testing to see if we can pin down a diagnosis (and hopefully a prognosis, as well).
Tier 1 involves more blood and urine testing. Although we've tested for arsenic and cadmium and mercury and all sorts of other fun things, this time copper is on the list. One of the docs noticed the patchy look of Luke's eye whites (which I've pointed out to other physicians) and said, "Copper poisoning?" There are also some metabolic issues they're trying to rule out. You may recall he's had an elevated liver enzyme on previous bloodwork.
Tier 2 involves a spinal tap. Which ought to be worth another medical patch on my mama scout vest.
(yes, he is flipping me off)
Tier 3 is the one I am most interested in. Genome mapping. I think once they get a look at Luke's actual DNA, we can finally find out what makes Luke the way he is.
Paul took this picture for me yesterday, while they were down in the city. We don't have answers yet, but we do have a glimmer of hope that maybe those answers are... Across this meadow and over that ridge.
Praying you find some answers soon!! I know how difficult it is to have a child with extreme behavioral issues, and delays. I'm so sorry, as I know how stressful this all is. The medical appointments alone are draining on the whole family. Blessings and grace to all of you as you seek to help Luke!
ReplyDeleteThank you for your prayers. I so appreciate them!
Deleteps: Thank you for keeping us all updated!! I hope someday to see your post where perhaps there are some "answers" to the mystery of Luke!
ReplyDeleteI really hope so, too. We're on the trail of a new syndrome, and after some research, I think this might be the one. But we'll have to wait and see what testing bears out.
DeleteI hadn't realized you had considered not adopting Luke in China. I guess it wouldn't have interfered with your adoption of Katie since that was simultaneously occurring in a different province? My husband would have done the same thing.
ReplyDeleteI know on the one hand, there's the "If he had been born in your family, you would have adjusted and coped" argument, but on the other hand, it doesn't seem prudent to knowingly adopt someone if you feel you wouldn't be able to meet his needs, especially considering the needs of the rest o f your family. It is such a hard decision to make, and of course, it isn't as if you get time and a full medical report to help you make the right decision!
I hope you'll continue to keep us updated. I do keep your family in my prayers. I hope that you will find answers, and I pray for healing for Luke and peace for yourself.
Actually, I met Luke 4 days before I met Katie. I don't think it would have threatened her adoption, but it certainly would have been sticky to say no.
DeletePrayers for answers........God put Luke in your family for a reason and He has great plans for his life. Praying that you will soon have answers that can help you help him.
ReplyDeleteThank you, Corina. I really believe it's everyone's prayers that has kept me going.
DeleteI pray that you find the answers. I can't imagine how frustrating it must be to not know what is wrong and not know how to treat him to help him improve.
ReplyDeleteIt's been pretty grim. I feel like some of the things mentioned at the UCSF appointment are glimmers of hope. A new syndrome was mentioned, and reading up on it has been pretty grim, but at least there's a support network and some INFORMATION.
DeleteWell, there may be a lot of unknowns, but that little boy has the CUTEST pants. Bet they are momma-made, too!
ReplyDeleteWhy yes they are! :D Thank you!
DeleteAwe, Mama...praying that you receive the answers you need to help Luke. He really is such a cutie, and it breaks my heart that there are so many unknowns...I believe Luke is where God intended him to be. With a loving family who will not give up on him. I can't even fathom to understand your trials, It is unfair that any family has to go through this! Prayers and Blessings.....
ReplyDeleteThank you. I sure don't understand God's plan sometimes, but I'm encouraged by your prayers.
DeleteThanks for updating us, Shecki. I know I'm not the only one out here in cyberspace praying for your little man. Sometimes we just need to keep plodding on. I like the hike analogy because that is what this parenting journey has felt like at times - a hike, or maybe a marathon!
ReplyDeleteThank you for your prayers! It feels like a marathon to this couch potato mama, lol. ;)
DeleteThat is where we found our "gene mile" in genetic mapping ... there is power in knowledge. Just keep your faith and perserverence strong. I know it's hard, but hang in there!
ReplyDeleteThank you. One of the syndromes mentioned at UCSF seems to really fit what we're seeing with Luke, but it will be months (at least) before we get to the genetic testing, due to insurance issues. We have to eliminate all the cheaper tests first. Still, if it IS what we're suspecting, there's a support network, so that's nice.
DeleteI am praying that this next round of testing will give you the answers you need to help Luke. He's so adorable... even when he's flipping you off. LOL (((hugs))) and prayers that the gene miles will end soon.
ReplyDeleteThank you! I didn't notice his finger during the photo shoot. After I downloaded the pictures and was going through them to find the best shot for the Juppy review post, I came across that one and busted up laughing! Needless to say, that one didn't make it into the review, even though it's one of my favorites. ;)
DeleteHope the answers come soon. The human body is a mysterious thing at times, isn't it? Prayers for the specialists and doctors as well.
ReplyDeleteThank you for your prayers. I'm feeling hopeful that eventually we may get some answers, but at the same time, not hopeful that those answers will be good ones. Conflicting.
Delete