Home!

We made it home yesterday evening. As with all hospital discharges, the process was slow and fast at the same time. Daniel, myself, and the girls drove straight home from the hospital in Spokane. Capper is still with Gram and Gramps at their cabin and will return home tomorrow. According to Gram he "misses Anellah but is being very good." Anellah misses him too but, thankfully, she doesn't seem too jealous of his time with Gram and Gramps and is enjoying our "girls only" day at home today. She has mostly returned to herself, she's still having a tiny bit of tummy trouble and doesn't have a very big appetite but has been happy that she has the OPTION of eating and has been cashing in on special requests such as rainbow pancakes for breakfast.

Making rainbow pancake batter, don't mind the chaos in the background!

I was able to have a brief conversation with Anellah's liver doctor in Seattle and had many questions answered although there are still so many unknowns. She can return to a normal diet and normal activity level when she feels up to those things. She will have another procedure next Friday at Seattle Children's Hospital to look at the bulging vessels again and treat a few more of them. She will stay in the hospital at least one night. After that procedure the liver doctors at Seattle will get together and discuss her case. They will determine what the best approach is, if she should have a surgery to relieve some pressure and "patch" the problem so that they can wait longer for a transplant or decide if a transplant is urgently needed. Of course I heard what I am used to hearing, "She is a very special case" because she doesn't just have liver failure, she also has diabetes and other issues along with being young. Her liver doctor said that it is better to wait until she is older to do the transplant (for a variety of reasons) if that is an option.

So we are back to "normal" except a few more appointments and the knowledge that this past week's incident could reoccur at any time. Thank you to every who has been praying for us during this time. We appreciate it!

Day 4

Anellah's recovery from surgery has encountered some problems.  Saturday night she was unable to keep anything down, this continued through Sunday evening.  Although there isn't any blood coming up, which is great, no one really has any idea why this is happening.

At this point we are waiting for her ability to eat and drink to return before we try to escape the clutches of Spokane into the clutches of Seattle.

Making the most of the facilities with Gram and Gramps

I (Daniel) am eager to miss less work and get Anellah into a more restful environment. Unfortunately this is just the beginning, this is something we've been sadly anticipating.  Anellah will be going through other surgeries while waiting for a liver transplant, a shunt to relive pressure by bypassing her liver (diverting blood flow around the liver to relieve pressure, not a healthy option) but hopefully no more burst varices.  Thankfully we live near family, great medical care, and everything we need.  But all of that pales in comparison to all the variables that are only in God's control.

Capper has Barry Manilow- Can't Smile Without You on repeat in his brain.  But he's loving Gram time.

On a side note it's freezing here!  Thankfully it hasn't been super-snowy so Anellah hasn't missed out on anything she was really looking forward to.  Gram and Gramps have been controlling and entertaining Capper at their cabin and Evelyn is being her usual easy-going self, tagging along with mommy everywhere.

Anellah faking happy for a picture.

Anellah actually happy (apparently balloons help, thanks Olsons!)

What a trip!

We left on Christmas Day to go on a long-anticipated trip to my parent's cabin near Spokane, WA. The entire family had been looking forward to it for months, especially Capper and Anellah. They planned to play in the snow, eat popcorn, watch movies, and get lots of attention from Gram and Gramps. Instead, less than 12 hours after arrival we were rushing to the emergency room with Anellah.

The main problem with Anellah's liver is that its scarring restricts blood flow through the liver. This is what causes blood to back up in her spleen where platelets are destroyed. In addition she has now had blood backing up in the vessels of the esophagus. These weak vessels balloon out (like a varicose vein). This ballooning is something we knew was a risk for awhile and during our trip one ruptured. She ended up losing a lot of blood, being transferred from the local hospital to a hospital in Spokane, and having surgery. We have been in the hospital the entire trip and won't be able to go back to the cabin because it is in too remote of a location. She has been extremely miserable to the point that I don't remember ever seeing her this way (even during past hospitalizations). We hope to go home today but the journey is far from being over.

This complication means she needs surgery as soon as possible to reroute blood around her liver however this is only a temporary fix. The only permanent solution is a liver transplant so hopefully we will be able to get on the transplant list and obtain a liver soon.

There is always a silver lining but today I'm having a hard time seeing it. Still, there is hope. This incident will likely bump up her priority on the transplant list. It will change our entire way of life (no longer traveling far from Seattle) and I'm sure God will work through this but days like today make it seem awfully unfair that such a sweet kid has to go through so much.

Thank you for your prayers and support.

It's chick time!

I love fresh eggs and our family eats a lot of them! We've talked about getting chicks for awhile and I couldn't pass up the chance to use the fantastic hen house and run that is on the property we are renting. So earlier this week, on one of the coldest days of the year, I went out and bought four chicks. By the next day I was convinced that four wasn't enough so I went back for three more.


All three kids love them and especially Anellah which is interesting because she is the least interested in animals and has the highest tendency to be fearful of animals. The chicks, however, are her thing. She sings to them, reads books to them, and tells them goodnight. It's awfully cute.

I'm having trouble getting good photos of the chicks since since their heatlamp is red but hopefully you can use a little imagination to see how sweet they are.

So here we are, living with three kids sharing a bedroom and seven chicks in the living room. It's a good thing we don't have a dog or this trailer might just explode!

Serenity Hour

It's 1:18pm and I'm in the serenity hour. That's what I call the time when I've run my morning errands and the littles are finally down for a nap and the bigger one hopefully earned her TV show and I stop...and breathe...and look around and wonder where to start. Usually I start with chocolate. Sometimes I spend the hour getting the house back in order but I try not to. I try to just spend a little time doing something that I can't do when there's noise and chaos and mouths to feed and zippers to zip and hands to keep busy. Often that means returning emails or making phone calls but today is Friday so I'm spending it with a special cup of my favorite tea...and nothing else. I'll think and pray a bit and sip my tea.

In about 8 minutes I'll move on to unloading the dishwasher and prepping breakfast and bundling up to crawl under the house and retrieve the stash of "wild" chicken eggs I discovered under there last night but until then I'll just sit and watch the rain out the window. What a difference 8 minutes of quiet makes.

Forward Momentum

We are finally able to move forward with the next step in the permitting process for our future home! You see, our property will need a well and a septic system but the majority of the property is a "wetland" which means it is protected space and cannot be used.

It's not called "wetland" for nothing, these are floodwaters

There is currently a well our property but it feeds the neighbor's house (Site B) as originally their house was the farmhouse for the farm we now own a piece of. We have been waiting for THEIR neighbor's property (Site C) to be sold so that we can make arrangements to have a well drilled on Site B and therefore have our own well on our own property. Drilling a well on Site B, however, will encroach on Site C meaning that they cannot drill a well in the corner of their property since the two wells would then be too close together. Long story short, Site C sold a few months ago and the owner has agreed to sign a well covenant stating it is alright for Site B's well to slightly encroach on his land. We can now bring this to the county and propose that we have our own well, site B has their own well, and site C will be ok with the situation!

Phew! We are nowhere new having actual permits but this has been a step we have been waiting for for almost a year.

In the meantime we're making sure the goats are comfortable, doing a bit of landscaping (aka burying huge rocks), and enjoying our lakefront property during this time of flooding.

Capper was MORE than thrilled to help with excavating!

We've been seen!

Today I should have been able to post that over the course of 2 1/2 months I was able to schedule and ATTEND all eleven of Anellah's medical appointments. Instead I can only say that we successfully scheduled them. More about that in a minute. The good news is that we have been able to see all of Anellah's specialists and I really like each doctor! I was sad to leave her old providers but I am shocked to discover her new doctors are just as thorough, fun and genuinely caring as her old providers.

Today was a lesson in taking a deep breath and saying, "Ok God, I'm in this frustrating situation and I don't understand why but with your help I can keep calm and make the most of it." After making the hour-plus drive into Seattle Children's Hospital, we arrived at security to check in, and were told that Anellah did not have an appointment today. I knew I had received a confirmation letter so when I inquired further the security desk said it was cancelled. We trekked to the registration desk and they made a further inquiry. After a few phone calls and meeting with a staff member from the department I was told that the appointment with a genetic counselor was cancelled since what was really needed was an appointment with a geneticist and this was going to be scheduled instead. What made the situation extra frustrating was that I had brought up this point and TRIED to schedule an appointment with a geneticist to begin with over a month ago but was told I could not. In addition I had called the previous week just to check and make SURE that this appointment was necessary but had not heard back.

I'm not sure what the "silver lining" of this experience was and I may never know other than that it was a lesson in patience. But I do know that no matter how hard I try to keep my life in order, to dot all my i's and cross all my t's, mistakes happen. Life is messy and frustrating and frankly it's not fair. I spent the morning telling myself that although I didn't want to go to the appointment and kept having thoughts about how it wasn't fair Anellah and I have to spend so much time doing this when we could be doing something FUN, I would go about the situation with grace and use every opportunity to be a light to those around me. And then this. It is a big deal, it was most of my day, and it was frustrating. But at the end of the day, God cares more about my heart doing everything as if for the Lord rather than how much I could have accomplished had I been home. And this afternoon we were still able to ride bikes outside because it wasn't raining. And spend time sitting on the couch reading to warm back up. So tomorrow I will wake up, and I will thank God that it is Veteran's Day. I will thank God that we have a day off as a family. I will thank God that I live in a country in which I have access to 11 different medical providers for one child. And I will thank God for my children with whom I can share life with and that I have the opportunity to show grace in the face of frustration.