Room to Grow

I haven't been spending very much time writing blog posts lately...although ideas float around in my head. The reason- I have three kids. I guess I didn't really expect three to be much different than two. But it has proven to be quite a bit different. Of course some of the difficulty I'm having stems from the fact that I'm on the 6th month of sleep deprivation...but we're working on that!

Despite all the "busyness" of having a house full of kids ALL day, EVERY day I'm still trying to live joyfully and obediently to God. A lot of times that looks like a zillion quick pra

yers throughout the day of, "God help me to have grace...patience...wisdom...compassion...etc." I'm not doing a fantastic job but I'm doing my best. And I know once sleep becomes more consistent I'll feel a little more sane.

In the meantime I know that God is stretching and growing me by leaps and bounds. It's during the struggles that I can choose to either become bitter and shirk away or sink my roots down deep and GROW.

More Insight

Waiting for pre-op

The girls and I were in the car and driving to Seattle at 5:20 this morning. I was surprised all of us stayed awake for the entire drive. Check in went smoothly and all of the staff were amazing; so adept at letting the patient dictate the pace! Evelyn tried hard to steal the show with her big cheeks, bright eyes, and radiant smile but Anellah's sparkle didn't let Evelyn take over entirely. I was surprised that Evelyn and I were invited right into the Operating Room where Anellah's 30-something surfer anesthesiologist agreed with Anellah that she could stay awake the whole time and cheered her on as she struggled to keep her eyes open while the anesthetic took over.

Evelyn and I left to get some shut-eye for her and breakfast for me. I intended to do a bit of reading and walk out to the car but I had hardly started eating when my pager went off calling me back to the waiting area, the doctor was already done! Her doctor was pleased to have visualized much better findings than had been expected. He treated a few of the varices (bulged vessels) and noted that they were all in the esophagus (which is better than in the stomach). Whereas he went into the procedure considering not if but what type of surgery would be needed in the future, he came out of the procedure with the opinion that surgery may not be necessary! He explained that if other vessels in Anellah's body around her spine, kidneys, and belly button open up to relieve pressure as the ones in the esophagus did that will be the body's way of doing what a surgical stent would do. I questioned the safety of letting this happen and he informed me that it is entirely safe. He also explained that her liver is currently functioning well, it just does not allow blood flow through it very easily but as long as some blood is still flowing through it and the rest of the blood is naturally rerouted around the body Anellah will be safe.

We discussed what may have happened last month and we came to the conclusion that it may have been related to a viral illness. While Anellah was in the hospital in Spokane she became very sick with vomiting and diarrhea which stumped the doctors who did not expect this reaction after the procedure. Today's doctor and I put it together that perhaps she was starting to get sick on Christmas day, this illness irritated the esophagus causing the rupture of the weakened vessel in her esophagus and the bleeding she experienced. The life-threatening side effect distracted us from the fact that she had a virus just like a lot of other people have been getting this winter.

As far as long term outcomes, they are looking much BRIGHTER than they were. She will have another endoscopy (the same procedure she had today) in about one month. The findings of that procedure will determine when she will have another procedure, if they have not returned then surgery may not be necessary because it means her body is accomodating this higher pressure. Although surgery is still a possibility it is not necessarily inevitable and the discussion of transplant has moved to the bottom of the list.

I will see Anellah soon, she is still in recovery and I am hopefully that God's peace is surrounding her so that she feels calm and is not agitated as she normally is when waking up from anesthesia. Thank you so much for your thoughts and prayers. I believe God had His hand on this little girl and perhaps the reason the results today were so different than 13 days ago was because of His healing.

Quick Update

Tomorrow I will bring Anellah to the hospital for another endoscopy to look at the damage and do more repairs in her esophagus. They will also do a CT scan and some other tests and she will stay overnight. I am hopeful that tomorrow afternoon we will be given some sort of idea regarding the plan for her as it relates to her liver. Please pray that we all sleep well tonight as we need to leave our house at 5:15am and I want Anellah to be well rested.

Proof that Anellah is a super-stellar patient and will sit still for blood draws even though she is a "hard stick"

Be Bright

Last year rather than making a New Year's Resolution I chose one word, the word was "Listen." Throughout the year I tried to focus on that word and it made a difference. I actually listened to strangers rather than just half-heartedly chit-chatting. I listened to my kids and tried to really understand what they were telling me both with their words and actions. I also tried to listen more deeply to what God was telling me. In a way I think I should choose the same word this year since I still have so much room for growth in this area but it really is time for a new emphasis. Perhaps each year I will continue to reflect on past words while adding a new focus.

This year I had been thinking of what word I would choose however then Anellah's school asked each family to choose a word and the school made a display with all the various words chosen by families. As a family, we chose the word "Bright." Matthew 5:14 tells Christians that we are "the light of the world" and sadly not all Christians act as such a light but this year our family chooses to brighten our light for all to see. This year we seek to "shine light stars" in a "crooked and depraved generation" (Philippians 2:15).

What a beautiful word for Anellah, she is such a dazzling light to those around her from the clothes she chooses to her smile that lights up the room. I also feel like every time Evelyn smiles it is so genuine and pure everything is more sparkly and everyone who sees her face light up can't help but smile themselves. And Capper, his ENERGY just fills the room! The amazing thing about Capper is that although he is just shy of 3 years old he already has an impressive ability to see a need and help! This means anything from running into the room with a baby toy when he hears Evelyn fussing to holding a door for someone whose hands are full, to curling up beside Anellah when she is pouting and gently saying, "What happen 'nellah? What's wrong? Are you sad?" I am blown away by these daily gestures.

Being a light is something I have been thinking about for myself too. How can God most use me? How can I make my light shine brighter? How can I share this light with others? I have some thoughts but I need to mull over them a bit more before I am able to type them out. I am also excited to see what God teaches me about being BRIGHT and illuminating the world around me.

I think this radiant journey has already begun as I struggled from a point of discouragement and disappointment when Anellah was unexpectedly hospitalized after Christmas and we were suddenly faced with the "next step" in her liver's deterioration to a place of acceptance. There will be many times when I am faced with the struggles that Anellah has to go through due to her medical issues and I am sure I will often meet them with sadness. I will not deny myself the opportunity to grieve by ignoring the feelings; by "just trying to move on;" or by "trying to stay positive." So there will be days that I feel sad but even in the disappointment I think God can make my brightness shine through. Who knows perhaps he will bring new people into my life to share their light with me on the days when mine is but a dim flicker and I need some help to see.

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.