Time to Pack Our Bags

It's time to get a move on! I need to pack our bags because we're going on vacation! We hadn't really done any preparing because I didn't want to waste time doing something that would just need to be undone.

I had resigned myself to being completely content not going on this trip despite knowing that it meant Anellah's body was succumbing to her liver disease and that it would be disappointing not to see family. But that's what is great about God, He is able to give peace in the midst of huge unknowns. I started feeling a little anxious today because I just wanted to know one way or another what was going on in Anellah's body, if she'd even have the procedure, and if we were going to go to Washington. So when Daniel texted, "Praise God! Pack your bags! We'll be home today! No evidence in her esophagus, they saw a little portal hypertension in her stomach though but nothing that needs any intervention." I was shocked. I almost jumped up and down (and might have if I wasn't sitting on the floor holding Isaac and Capper). I could tell he was surprised and excited too because he rarely uses punctuation in texts.

Another answered prayer is that I was able to convince the surgeon ahead of time to allow us to use the pediatric blood lab again which is SO MUCH better for Anellah than the adult lab where they poke her at least twice but usually more.

So now I must run, I have bags to pack, a couple loads of laundry to wash, a car to get ready for a long road trip, road trip activity bags to assemble, and celebrating to do!!!! Please join in thanking God for answered prayers and good news!

Waiting in pre-op, "I want breakfast PLEASE!!"

Because someday the frustrations of today will have passed...

Dear Anellah,

Three years old is tough. It's tough for you and it's tough for us. You are trying to decide how your independence fits into life and we are trying to figure out how to give you independence while still teaching you that listening to Mommy and Daddy is very important. Every day Daddy and I get up praying that we'll know how to be the best parents we can. Most nights I go to bed wondering what we're doing wrong. But tonight I have a different perspective. Tonight I'm thinking about how proud I am of you. How proud I am that you're going through a difficult stage but that it's something you need to go through. It is something normal and a reminder that as much as the odds have been stacked against you, you are still learning and growing every day.

Recently the Mommy of one of your friends asked something along the lines of, "When did my son stop being the sweet obedient boy who listened to Momma?" and the wisest response I read was, "He is still listening to you, he's just learning that he can listen to himself now too." You're learning to listen to yourself and wondering how that fits in to what Daddy and I tell you. You've grown up a lot lately and your language skills have skyrocketed. With those skills come the comprehension that you can disagree; that you don't have to follow everything blindly. Sometimes, in the moment, the consequence for an action seems worth doing just to exhibit your independence.

Tomorrow we will get up. Tomorrow you will be frustrated, tomorrow I will be frustrated. Tomorrow I will tell you "no" with my words and tomorrow you will tell me "no" with your actions. You will probably be tired and grouchy from keeping yourself awake late at night tonight in defiance. As much as we remind you to try to be a ladybug instead of a stinkbug the stinkbug will shine through here and there. Tomorrow I will once again find myself pleading with God to please, give Daddy and I the wisdom and patience to know which battles to fight with you and which battles to let you fight alone. And one day I'll wake up to find that you're not three anymore, that the battles which seem so important today have faded and my little ladybug has grown into quite a fine little lady.

I love you Anellah,

Mommy

(PS You're Capper's favorite person in the whole world!)

New Date

We have a new date for Anellah's endoscopy. It is now scheduled for Monday July 2nd. She does have to re-do bloodwork and it will be in the regular lab as opposed to the pediatric lab so hopefully she gets a very experienced phlebotomist!

This past weekend we enjoyed having my Mom here for a visit. She hadn't had a chance to see Capper in person since he was less than a week old! The two of them enjoyed lots of cuddle time since he came down with a cold which turned into an ear infection and made him fussier than he's ever been. Thank God for another pair of arms so he could be held the ENTIRE day!

Sad, sick boy being comforted by Grandma

Anellah was overwhelmingly excited to have "Grandma B" visiting. They went to two parks, ate lots of pretend food, read books, and most importantly played with WORMS! Anellah is going through a stage of testing limits which is exhausting for those around her, again I am thankful that my Mom was here to help absorb some of effort it takes to keep up with a testing three year old.

WORMS!!!!

And we're done!

For today at least...We made it to within a few moments of the procedure when we were turned away because Anellah has a cough. I'm sure it's the right decision since anesthesia can cause respiratory problems in and of itself but it was definitely frustrating after spending all day and all morning at the hospital and making other arrangements for work, Capper care, etc. Newest update, we're waiting to hear from the hepatology department as to when we can reschedule. Hopefully it will be next week.

Here's a picture of Anellah all cozied up waiting to go to the Operating Room.

Don't Forget to Join Us...

...by praying with us tomorrow for positive outcomes determined during Anellah's endoscopy. Anellah and I will be heading in to San Francisco at the crack of dawn for the procedure. Hopefully the "scope" will show a relatively "normal" esophagus and we'll be able to go home in the late morning. If there are any varices (blood vessels that have ballooned out due to increased pressure) they will be repaired. The repair is relatively simple but will mean that she and I will need to stay overnight. Also, a repeat scope will be needed in a few weeks to check that everything is healing well. In addition she will be at increased risk of bleeding and we will be "advised" by the doctors not to go on our vacation.

Please pray that:
No major varices are discovered
The nurse gets her IV started on the FIRST attempt
The slight cold she has now has completely disappeared by morning (if she has symptoms such as fever or congestion they will not put her under anesthesia)

We're thanking God that:

Today we went in to San Francisco for some preliminary bloodwork and she was a super sport! As usual there was a mix up and we had to go back to the lab for a second blood draw but she didn't even cry the second time around!!
We didn't have to stay overnight in the hospital tonight as originally planned
My Mom is visiting so Capper gets to stay home with her
It is summer break at work so I don't have to work Thursday/Friday this week
We have the privilege of parenting this exceptional child

Stay tuned for an update tomorrow!

Biopsy Results

This past Monday we went to UCSF to hear about the results from Anellah's biopsy. The hepatologist said that her liver is very damaged but he has no way of knowing how long it has been damaged. He wants to do one more test before deciding next steps. This Friday she will have an endoscopy to look down her throat into her esophagus. When the liver does not function properly it causes blood to back up and increases pressure in the vessels of the GI system including one's esophagus. We are hoping that the endoscopy does not show any significant damage to the vessels in the esophagus. If there is damage and it needs to be repaired then we will be glad the endoscopy was done but it will mean we have to stay home from our vacation which is planned for the first week in July. Please pray that the logistics of this next hospital visit are easily worked out as she will need to stay overnight again. Please also pray that the procedure goes smoothly and there are not any significant repairs that need to be done. After this the doctor will decide if he feels surgery or a liver transplant is in Anellah's future.

Liver Biopsy Update

Yesterday Capper, Isaac, and I drove Daniel and Anellah into the hospital and dropped them off. Daniel and Anellah had the morning to get settled in their hospital room and receive some sort of schedule for the days ahead. Anellah received an IV (a traumatic experience that required an ultrasound to find a vein) and had blood drawn. She ate a super-special dinner of pancakes and fruit, had her medicines, and went to bed. Later she had to have another IV started, the other one must have gone out.

She had to return the favor of many pokes by giving Daddy a shot too!

This morning the doctors did the biopsy which was a short procedure during which Daniel was able to stay by her side. The doctors said there was definite scarring on her liver but didn't comment as to whether it was better or worse than they were expecting. She received platelets because she has low platelets due to her liver disease. Platelets stop bleeding and this procedure in and of itself can cause severe bleeding.

Post Biopsy, totally drugged!

The recovery today was pretty uneventful except that she had to have IVs started TWO MORE times. But she gets over things quickly and Daniel gave her one of her favorite treats- gum!

Tomorrow we think the plan is simply to have blood drawn a few more times, make sure she's not bleeding from the incision, and head home. Simple enough.

My real question is whether or not the doctors feel encouraged or somber about what they found on her liver but we don't really have that information.

Thank you for your thoughts and prayers!