We have a clinical diagnosis!

Nearly a year after first meeting Dr. Yang and the genetics counselors, he feels comfortable making a clinical diagnosis. I’ll spare you the two hours of chit chat I just had to suffer through before hearing the diagnosis. They’re calling it Dubowitz syndrome. Or “Dubowitz-like syndrome,” since they don’t exactly know which gene causes the syndrome, and the thing is so rare, they don’t have a ton of published cases to work with. 

They took blood to look at a gene called LIG4. It’s the only gene they know to be associated with Dubowitz syndrome. The test will take 3-4 weeks. I’m surprised at how anxious I am to hear those results. Dr. Yang doesn’t expect there to be any mutation in this gene, especially since Evelyn doesn’t show a lot of the classic symptoms: mental retardation, eczema, immune system deficiencies. Since LIG4 is a DNA repair gene, mutation can cause radiation sensitivity. I’m hoping this isn’t the case with Evelyn. She’s already had dozens of chest X-rays. 

The diagnosis is overwhelming. 

I’m glad that this new baby boy is the last biological baby we plan to have. Dubowitz is thought to be a recessive genetic disorder, so baby boy has a 25% chance of also receiving both Thane’s and my mutated mystery gene. I’d rather not knowingly risk this with another child. I guess it’s good timing to find this out now. We had always wanted to have 4 biological kids and then adopt one or two kids. Something to thank God for! 

Please pray for our nerves these next few weeks while we wait for the results of the LIG4 test. And then for what that means for Evelyn. 

I keep thinking “this” will be “over” if I wait long enough. But I’m still accepting that “this” is just our life. It’s not exactly the life I had planned, but whose is? This is getting older. This is the real adulting. 

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Weaning off antidepressants 

Today, I went to my midwife’s office to make a plan for weaning off the antidepressants I’ve been taking for more than a year. 

I can’t even believe how different life is now versus one year ago. We live in our own apartment now. Yes, it’s in Thane’s parent’s basement, but we still pay rent and cook our own meals and vacuum the floors. 

I’m in school and on course to graduate in February. That’s not very far away. If Thane can’t ever work again, I can make enough money now for our family to eat without needing any government assistance. A certain monthly visitor arrived for the first time in over 3 years, resulting in a much more normal balance of emotions. I can cry again! 

Thane is doing well after the gallbladder surgery in July. He still has some cognitive issues to sort through, but he’s been making himself read every day and that’s huge. He actually went to our church yesterday and offered to volunteer some of his time toward any business-related projects they might have. He starts on Monday!  I am so proud.

Brooke started attending ECEAP preschool a few weeks ago. It’s two full days per week, giving both of us a good amount of structure and variety. Plus, she’s good and tired by the end of the day, so bedtime has been super easy. 

I heard a noise in the living room at 8:45 tonight. It had been over an hour since Brooke had fallen asleep. I peeked in, and there was Evelyn with a bag of tortilla chips. I told her she could eat as many chips as she wanted before she went back to bed. That girl is a riot. At our last weight check with her dietician (Monday), she’d gained 3 oz in a month. Before that, she’d gained a whole pound in one month. That’s basically unprecedented! The whole family got a nasty stomach bug a couple weeks ago. Lots of vomit. Evelyn only needed 2 days of tube feedings and is now hungrier than ever. We are discontinuing her night feeds over the next month to see if she gains anything. I’m slightly freaking out in the back of my mind all the time. Last time we tried this, she gained no weight for 3 months. 

Last but not least, Hope. She’s not a baby anymore; she is officially a toddler. My mom sent me this adorable video last night while I was in class:

​That sums up our happy Hope. God really knew what He was doing when He gave us this child. 

I am grateful for it all. This life, our story, is amazing. 

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Another surgery coming up soon

Happy Independence Day! We celebrated with a picnic at a park with my parents (who live here now!) and Thane’s sister’s family. I made way too much pasta salad. 

A few notes about the picture above:

  1. Patriotic color coordination is hard with girls. Nobody makes red baby clothes for girls. Good thing we got these adorable hand-me-down dresses. And only 1 out of our family of 5 fought to get into their outfit. Brooke finally conceded when I explained that we’d all be matching. She’s very particular (read: OCD like her mommy), so the matching argument made sense. 
  2. Getting all 3 girls to look at the camera and not be blurry is impossible. I’ve accepted it. We do have another decent picture, but Hope happens to be pulling Evelyn’s hair.
  3. There is a bandage on my finger. While chopping basil for the above-mentioned pasta salad, I chopped off a 1/4-inch piece of the side of my finger. My haphazard pressure dressing stopped the bleeding, so l just took some Tylenol to help the throbbing. 

Since my parents live here now, and since Thane has this one last medical obstacle to starting his job search, we met with a surgeon last week to schedule a gallbladder removal surgery. A cholecystectomy. To our surprise, they fit him in for July 8 — this Friday! It should be an outpatient procedure with a weeklong recovery. We are praying that it actually is an outpatient procedure. He hadn’t had the best luck with these kinds of things. 

All of the girls are doing really well! People have been asking, since it’s been so long since I’ve updated. 

Evelyn got through her cold last month without a hospital visit. She’s loving preschool 3 mornings a week. Brooke is starting to learn how to read and wants to go to school so badly. (We want to check out the local Christian schools but it feels a little crazy to do that now, with no way to pay for it.) Hope is still a happy baby! She walks everywhere now. 

And in case you were curious:

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Breaking the silence to post an update. 

In Scripture, as in life, there are periods of silence. Most obviously, there is the 400 years between the Testaments. It’s hard for me to remember that God, although He was not speaking through prophets, was still working. Silence is not absence. 

So, too, silence on this blog does not mean nothing is going on. It just means that I haven’t taken the time to write about it! God is most definitely still working in the lives of all the Gromlichs. 

Thane is healing. Slowly. Some nerves are reconnecting, but it’s a little discombobulated, and we’re praying that it sorts itself out in time. For example, when Thane scratches just above his scar, he feels it on a spot further up and to the left. Weird. Elimination (peeing and pooping) is no longer painful. We are cautiously reapproaoching the marriage bed (like how delicately I worded that? 😉 with less pain, too. The actual incision sites on Thane’s neck and lower back are still sore. It’s a deep pain that still requires Tramadol and Baclofen (for pain and muscle spasms, respectively) 2-3 times a day. He’s gaining strength, but this slow recovery process is disheartening. Again. It’s the “again” that is so difficult. We were expecting to have him ready to start looking for jobs this summer; now, we just don’t know if he’ll be ready even by the end of summer. But I guess we never knew. Who actually knows their future? Certainly not us. So, we wait on the Lord: His ways are above our ways (Isaiah 55:8-9). All we know to do is follow the path, one day at a time. 

Brooke is turning 4 years old this Sunday. Sweet, smart, beautiful Brooke. She is a treasure. I’m hosting Brooke’s Birthday Bash this Saturday morning, and if you’re in the Spokane area, I would love for you to stop by! We’ll be hanging out from 9:30 till 12:30 with brunch foods to fill everyone’s belly and hopefully wear out the kids so the grown-ups can be rewarded with a good nap time. No gifts are required, but if you feel like you absolutely have to, we always prefer experience gifts (tickets to Cat Tales, etc.). When you come, feel free to bring some food, but, again, no obligations! We just want to enjoy your company. 🙂 Maybe you’ll be treated with Brooke’s “story time” mode. It’s adorable and impressive how articulate she is. 

Evelyn is still her funny, feisty two-year-old self. She started going to the Spokane Guilds’ School 2 weeks ago for preschool 3 times a week. It’s a wonderful experience for her to receive speech, occupational, and physical therapies in a group setting, so she’s not only learning from her therapists, she’s also learning from her peers. And they are really cute peers. So that’s 3 times a week, from 10:30 till 1:00. They feed the kids lunch, and Evelyn is the best eater at her table! You know that was a proud mama moment for me. Just a year ago, she wouldn’t even eat applesauce. 

Hope is 10 months old now, and she’s really the happiest baby I know. She smiles and laughs easily, can climb stairs, and is starting to balance well enough to stand on her own for a second or two at a time. If anybody out there likes babies and feels like it, you can have her for a couple hours. I accept cash, checks, and PayPal. 🙂 

I was washing dishes the other day and thinking. It was quiet for a moment, and my thoughts wandered into the big cave of “How am I doing?” People ask me, and I never know how to answer. I think I’m still stuck in survival mode. In the past week or so, with Evelyn going to school regularly and nobody being Sick, I’ve been able to enjoy a home routine. That’s huge. It just helps me and the kids feel secure, which helps everyone behave well and sleep well. And a well rested mommy is a happy mommy. So I must be happy. But I’m also on the verge of crying if I think back to the chaos in that hospital room a month ago. School is keeping me busy — more on that later. 

Thank you for continuing to pray for us. 

Time to take Evelyn to preschool! 

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Neurosurgery 2.0: immediately post-op

Surgeon just came by to say that surgery went well. He stitched up the spots in the original patch that were loosened, but even after that, the fluid was trying to pulse out. The surgeon thinks Thane might have some hypertension there, even hypercephaly. They put in a lumbar pump to drain 10 cc’s of fluid from his spine to decrease the pressure. So they’ll keep him in ICU at least 2-3 days and then stop the pump to see if the pressure builds once the incisions start healing. And then we’ll have to address that issue when we get there..
The surgeon said that the extra issue makes more sense with the extra symptoms Thane has been experiencing since the car accident. (Can you believe that was 15 months ago?) So, the Chiari malformation was there since birth and caused his nausea and exertion headaches. But hydrocephalus/hypertension could  have been caused by the trauma of the car accident and could help explain the brain fog that cleared up when the surgery drained him of a little extra fluid. The brain is a fascinating and terrifying thing. 

One step at a time, trusting in Holy God’s goodness and faithfulness. Thank you all for your prayers! I promise to keep you all updated!

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Neurosurgery 2.0: The Pre-Op Wait

Thane has to redo his neurosurgery today because one of his internal stitches popped. 

This is what it looks like this morning:

  See how thick that scar is? No bueno. That’s how much the skin has stretched out because of the pool of fluid under it. 

Thane and I woke up at 6:00 to say goodbye to the girls and get to the hospital on time. I forgot to brush my teeth. But I did remember to make coffee. 🙂 

Please pray for Thane. He hasn’t slept well this last week; he’s dreading the surgery and pain of recovery. He hates having to live at his sister’s house and just wants to be with his girls. We miss him when he’s gone.

 It will probably take about 2 weeks before he can come home. If anyone is available to babysit while I’m at school on Monday and Wednesday nights (6-10), that would help us out a lot. 

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Moving on up! Well… down. 

Big news. We are moving! It’s happening; we are getting our own place — in the basement. 

Thane’s parents have a 2-bedroom apartment in the basement. So, it’s our own space, complete  with a kitchen, bathroom, even our own laundry. But there’s a safety net: two loving grandparents upstairs who can fold some laundry or cook a meal every once in a while if I get bogged down. 

I’m excited to give Thane’s parents their house back. In case you hadn’t heard, my father-in-law had a stroke a few weeks ago. They called it a Transient Ischemic Attack (TIA), but they weren’t quite sure. It could have even been a migraine that looked like a stroke. Obviously, some things need to change, and we would like to do our part to provide some peace in the house. 

I’m excited to get my own kitchen again. I packed up my kitchen nearly two years ago, and I had no idea when I would unpack those things. I had no idea the circumstances under which I’d be seeing them again. The kitchen towels from my Nanny that don’t match anything at all. The PBU mug that you can’t buy anymore. My one and only knife: a green chef’s knife from Pampered Chef. 

The official move date is set for next Saturday (March 12) but the girls actually moved into their new room today.   

Yep! Brooke and Evelyn get bunk beds! This is Evelyn’s first night in a bed. Neither of them napped, they were so excited. So bedtime was a breeze. 😊

I’ll post pictures of their room tomorrow!

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