Catch-up Time again! *Surrender*

I have discovered, upon reading other blogs (primarily on crocheting and Catholicism--cuisine, culture, etc.) that I must be a truly terrible blogger because unlike others who seem to make at least a peep of an appearance daily, especially with cute and creative things (these are some cute baby hats I am attempting as a very dear friend is expecting #5 in August:
http://knittogetherdesigns.blogspot.com/2010/06/knit-together-designs-rogue-cap.html and
http://knittogetherdesigns.blogspot.com/2010/06/knit-together-designs-rosalie-cap.html).
BTW, I don't know what her policy is on selling, etc., as I am not planning to sell these first few, but I am sure if you dedicate yourself to some time searching her blog it's there.

Anyway, things are good. REALLY good. Crazy, right? How can things be really good when Alex is sick and life is a crazy mess and I feel like I fail at all the things that matter (wife/mother/occupational therapist, etc, etc--oh yes, crocheter...). Because GOD IS GOOD. YES. AMEN. HALLELUJAH--aka Praise God.

Let me elaborate, because, frankly, I REALLY want to (and yes, this post will be full of excessive capitals, please prepare yourself). I have been feeling such a failure, as I mentioned. Seemed like I could not do anything right. And I was. I. Me. Alone. Independent. NOT depending on the Lord. And I was screwing it all up, and very well, thank you. I was sick (physically-bronchitis/laryngitis; spiritually-confused/hurt/angry/didn't know where to turn; emotionally-downtrodden and depressed). I am so thankful for a friend who helped me to turn it around--we are so blessed to have a community of believers to turn to when we get lost and can't find Him, even though we *think* we are looking in the right place--but in my case, I was looking in the mirror for answers and not to God, despite thinking I was looking in the right place. Frustrating, right?! But easy to do. I have discovered in my short and sweet-n-sour life (because really, it's never always one or the other!) that when I hit a brick wall, pick myself up, and do it again, and again, and AGAIN, it's usually because I am picking myself up and throwing myself into that wall. If I simply say, while lying on the ground, bleeding from my heart and soul--LORD, PICK ME UP, PLEASE! HELP ME TO SEE YOUR WAYS. HELP ME TO KNOW YOUR TRUTH. I CANNOT DO THIS ALONE AND I DON'T EVEN WANT TO. And yes....wait for it...I GIVE YOU ALL CONTROL OF MY LIFE (stings, don't it?! but not as much as that wall we've been getting a bit too close to) AND SURRENDER (not popular in our culture--at all)EVERYTHING TO YOU.

Okay, so back to the good stuff--Alex, the primary person this is about.
We got to the Westside again at the end of the month for final check ups, etc., and then we will go before the selection committee and get on THE LIST. Alex has actually been doing better physically, he is emotionally being challenged as it is hard not to get depressed and feel down when you feel like pooey much of the time. He is itchy, so we are getting a refill on the anti-itch meds (now with Group Health, so switching docs, etc.) and will get a pain consult a UWMC (henceforth, the University of Washington Medical Center shall be called UWMC to save me some keystrokes and lessen the likelihood of carpal tunnel). We found out that Alex's vitamin D (a hormone, actually not a vitamin, as a side note) was nearly so low it could not be calculated. So he is on 50,000 IU's weekly for 8 wks as well as daily. Hopefully this will remediate some pain issues and also help the depression.

So, we have so many people praying and we would like to ask for a few specifics:
*Alex's complete and total healing through Divine Grace.
*Alex's ability to maintain his blood sugars in the meantime.
*Relief of his pain issues.
*Lifting of the weight of depression he is experiencing.
*Strength and loving regard for one another in our family--this is hard to do in tough times, but then the most important.

Thank you everyone, and thanks for dealing with my on again/off again relationship with the blog.

God BLESS YOU all!!

Anticipation

It's snowing here in lovely Spokane (aka Spok-a-loo, Spokompton, Spokanistan, just to name a few of our lovely middle-American city's nicknames!). Miss E. is enjoying her day at Ms. Vicki's as Mommy and Daddy continue to work on getting house, home, and finances in order, as well as spending a bit of time Mommy-Daddy together that is in such short supply some days!

Last night we decorated our ginger bread house, which anyone who has done this with a 3 year old can tell you was fun and challenging! If I can figure out how to post pics on here I will put on up soon :)

I found a beautiful picture yesterday which has been made my profile picture on facebook of Joseph and the Blessed Virgin on their journey to Bethlehem, Mary large with child (probably 'radiant' but most of us did NOT feel radiant at that point in our pregnancies!). I can only imagine her anticipation, both in meeting the Son of God face to face, whose kicks and somersaults she had felt for several months, and being done with being pregnant, that beautiful time that all women experience when they have entered the ninth month. Like many things, this most amazing experience was well worth the arduous waiting, and in their case things seemed to get worse before they got better (can't you just imagine- Joseph "Mary, I'm sorry, but Caesar is requiring a census, and we must journey to Bethlehem to do it.' Mary "REALLY?!?! HE HAD TO CHOOSE NOW?!!? DOESN'T HE KNOW I'M WITH CHILD?!?!? JUST CARRYING THE SON OF GOD HERE." Well, she probably didn't say that, but I would have!!). This challenge is a good reminder to us all who going through challenges--for our family, this time of waiting is difficult and at times heartbreaking, but that which we wait for will be a great reward--the chance again at life.

In this Advent season, we join the world in joyful anticipation of the celebration of our Lord's birth--Veni, veni, Emmanuel!!

Baby Anna

Just a quick note for now, but God has brought this family's story to me via a mutual facebook friend and I hope you will all lift them up in prayer.

Their blog can be found at : http://babyannajoy.blogspot.com/

Immaculate Conception-eve

Hello, hello :)

Today marks the eve of the date that the Roman Catholic Church celebrates the immaculate conception of the Blessed Virgin Mary, God's creating her clean and unblemished by origional sin in preparation for her motherhood of Christ! Thank You, Lord, for Christ's mother, the beautiful Virgin Mary, whose "Yes" to You brought Christ into the world to bring our salvation! We love you, Mary!!

Alex had a busy day today working with our friend Carl to get our garage organized. As we have a small garage and lots of stuff, this was not small feat. Thank you, Crockett, you are our hero! Erin had a fun day at Ms. Vicki's, and mommy had a good day at work. I was even fortunate enough to be given a gift of peace from God over a worry I'd had--ahhhh! it feels so splendid to just hand it over to Him and allow Him take the lead :)

As a consequence of the day, Alex was very tired and in a lot of pain after working. He got some rest while Miss E. and I stuff ourselves (mostly me!) on a pasta dish containing the dangerous combination of lemon, bacon, veggies (Stir-fry, as those were the only one's in house!), chicken, gluten-free pasta, and Parmesan cheese. Can you say 'stuffed'? I might be able to, if only I could breathe around all this food in my tummy....

We officially decorated the tree yesterday, and for the first time, Ms. E got to help. I think the best part continues as she stops and talks to several of the ornaments, a piggy with spectacles being one of her favorites and mine as well.

Alex spontaneously started doing better with his blood sugar the other day--proof that God answers prayer :) God bless you, everyone, thank you again for your prayers and please keep them coming!

Gremlins

I actually did write a blog post, back in OCTOBER (i.e., one million years ago--Douglas family standard time!). However, Blogger was apparently infested with gremlins that inhibited me from posting our info, which unfortunately coincided with my MIL's letter, making everyone aware of the blog--can you say bad timing?! I can only attribute this funk-ness to the fact Satan is getting his knickers in a twist over all that prayer coming our way and is trying to disrupt things. HAHA, too bad for you that God is stronger! And our prayer warriors are amazing, too, so basically he is just plain out of luck!

UpDates:
Anyway, Alex is doing OK. We are in the final phases of getting on the LIST. Big, big prayer request from all you awesome peeps out there--Alex must, absolutely, without hesitation get his blood sugar under control. This is a hard thing for Alex, so he really, really needs some prayer on this one! His blood sugar is a major non-negotiable in getting listed. Okay, I have emphasized that enough.

Anyway...
I got a new job back in September--now working with children ages birth-15 three days per week at Holy Family. A truly fun gig, I laugh every day with my kiddos and have a great time being challenged by their various diagnoses, etc. I am reminded daily of the fact that the human spirit can over come anything--even as a baby, toddler, or child. And best of all, that no matter what the terrible challenge/situation/condition--God doesn't make mistakes! And even if we as broken humans do, He can make beautiful anything we mess up! My job does bring some tears of sadness, as well, I can't paint it all with pretty rainbows and unicorns and make it all amazing, but it's pretty darn close!

Ms. E...
Is fabulous. We were discussing prayer the other day, and her little girl insights are amazing. "Can we talk to Jesus, Mommy?" "Yes, anytime you want. He loves to talk to you!" "When we eat and ni ni time?" "Yep, and any other time, too." She is truly a blessing--whether it's singing a song, telling us a story, or finding the moon and stars, every day is another to be cherished. Since Alex was having a more and more difficult time taking care of such a curious, busy little bug, she started daycare near Mommy's work around mid-October and LOVES it! There is another little girl there around her age she can play babies with and nice boys she can climb and jump with and she really likes Ms. Vicki, the owner. You know it's a good sign when you get up on Saturday and your kiddo asks if they get to go to Ms. Vicki's house that day!

SSD--
So, I finally got around to dealing with the dreaded SSD (social security disability) application, fully expecting to be denied, get an attorney (fortunately Erin's god father specializes in that...and no, that's not why we chose him, haha!) etc. Amazing, about 6 weeks after our application was submitted, we were approved! Yay! Financial strain greatly reduced, ability to save some money for Erin's college fund, etc.--Thank YOU JESUS! Just when things were getting a bit thin around here, God, as usual, come through in the clinch.

In closing--
I am going to try to diligently blog everyday--I have been made aware people actually read this thing and might want some new material from time to time. So, I will do my best and please, as always, keep those prayers coming! Thanks everyone and God Bless you!

Learning to Fly

The MELD Goes On.....

So, we spent the day on Tuesday at UWMC for more meetings, tests, etc. This all went very well. Alex's MELD is still 18, where it has been holding for a while, which is good. Transplants are currently happening at 24-26 from what the surgeon told us. So, we have a ways to go, but as always with Alex's condition, it could drop back to 15, or jump to 30--and vice versa. So, we are just hanging in there for now.

A Tidbit of Awesomeness...

They are considering Alex for a liver/pancreas transplant. This is very cool. They haven't done one at UWMC, but their surgeons have at other facilities, including Dr. Reyes, who does them frequently at Children's Hospital. With a new pancreas, Alex would no longer be diabetic or have pancreatic insufficiency. Which would all be great! There is, however, more risk involved and they haven't decided if they want to do it or not--we are just being 'considered' at this point.

We got to meet with a transplant surgeon for an hour and go over all the risks/benefits/and liver types that we have options for. This sounds strange, but there are a few different types that come along, as follows:

Liver from a donor who is clinically without brainwaves:

These are the ones that allow for the most preparation, as the process of decision to donate is typically made a bit more in advance and the surgery is not rushed but a more orderly process in terms of collecting the organs (they are technically a 'harvest', but even when I worked in surgery I didn't like calling them that--that is a person who God created and is loved by a family, after all).

Liver from a donor who may or may not clinically have brainwaves but is determined to be unable to live without life support:

These donors fall into that area where it is felt that they will not live without significant life support, but with it they could live for sometime. Therefore, the family must decide which route they wish to take and if the life support is removed, then they wait until the person has passed away (no longer has a heartbeat) and then proceed with the surgery to collect the organs. This is a bit more hasty, as they must remove the liver within 30 minutes of the heart stopping. Therefore, there is a small chance of increased damage to the liver, and therefore a small chance of increased complications.

Hepatitis B

Seems strange to transplant a liver with disease, but since Alex has the antibodies to Hep B through the vaccine, it wouldn't make him sick.

Hepatitis C

In the very worst case of scenarios, i.e. MELD of 40, we can accept a Hep C liver that is not damaged yet by the virus. However, in any other case, they would give this liver to a Hep C positive patient instead.

Split-liver

Kiddos with liver disease get preference in the transplant world, but they only require 20% of an adult liver so they can donate that to a child and also give the remaining 80% to an adult, and the 20% will regenerate in 6 weeks (yep, that is how amazingly we are made!).

The Jist

There are four main types of complications that can occur. Some require only an intervention, some require a new transplant--sometimes within 48 hours. The risks are calculated on the typical donor age of 55, and so it is fair to say that Alex actually has a reduced risk since he is so much younger. Also, the pancreas is a much more sensitive organ, so it has more risks. But, not being diabetic anymore will reduce so many other risk factors later in life that it will likely be a good choice for us, if we are chosen.

Alex...

Is feeling pretty bad lately. He's started having problems with vomiting, which is a normal but unpleasant consequence of chirrosis. We are working on getting his pain managed better, and God is good in our lives. Some days it's so hard to be patient and keep the faith, but we are making it day by day. It's funny how much things can change. I have always been such a planner, constantly looking to the next five years and trying to plan and push myself to do and be what I think I should, and doing that to those around me, too. But now I am learning to live in the moment, day by day. This was a prayer I had prayed sometime ago, and God answers prayers in such unexpected ways sometimes! But He is good, and our family is trying our best to stay upbeat and look to the future with joy and hope, even on the bad days. I was listening to the radio today and this song by Tom Petty made me kinda smile, since this stanza is so true:

(From "Learning to Fly")

Some say life will beat you down

Break your heart, steal your crown

So I've started out, for God knows where

I guess I'll know, when I get there

Sometimes I feel so helpless, so much like an island being beaten by the stormy waves of the sea that surround us what seems so infinitely. But we are learning to fly---without wings, without our own knowledge and understanding, but still, we fly.

Drum Roll, Please

And so, finally, and update! Life feels like it is going a million miles an hour and yet standing still...a strange juxtaposition for sure. At any rate, here is what is new, not necessarily in chronological order:

*August 4th found us again at the UofW, this time just Mommy and Daddy as Ms. E was having too much fun with her auntie and cousins to come along. We went through the transplant class, which is about 4 hours during which we had the opportunity to hear from a REAL, LIVE liver transplant recipient. And that was VERY cool. Colin received his transplant in 2002, and in 2004 his fiancee also had one, so he has seen both sides of the coin. Awesome. Truly. To hear the straight dope from one who has lived it gave us both much hope for what life will hold. It was hard to believe that this pretty healthy looking/talking/acting guy had once been so sick he was nearly on death's door. He was taking a ton of Lactulose (apparently a pretty foul cocktail similar to GoLightly, for any who have had to take that) to counteract the high ammonia levels in his body. Basically, it causes profuse diarrhea that doesn't allow you to absorb the ammonia that your liver is not dealing with. If ammonia gets too high, you can get hepatic encephalopathy, a kind of swelling of the brain that leads to severe confusion, seizures, etc. NOT GOOD. Fortunately, with some good drugs they can counteract it (pretty well) and keep you functioning until your new liver arrives.

We then heard from the transplant nurse coordinator, a lady named Stephanie who I would not want to mess with because you can tell she is a bulldozer when it comes to getting her job done and patients taken care of (can I get an AMEN! thanks be to God for the motivated, driven people in health care that we have been given!). And finally, the pharmacist who had a lot of good info about the drugs you take the first three months after transplant (40/day) and the rest of your life (12/day). We then saw a nutritionist who unfortunately gave Alex license to drink as much whole milk as he wants to keep his calories up and a very nice social worker who will be helping us with some of the logistics of the transplant, but since Alex is not getting it due to drug/alcohol reasons, maybe not as much as some. Also, she coordinates the support group that we are hoping to attend when we go back October 4.

We had some good mommy/daddy time, some great Indian food, and some amazing Seattle weather.

And now, Alex is actually feeling---wait for it---better! He is not quite the shade of yellow he once was and isn't quite so exhausted. We know that this can flip on a dime, so keeping that in mind, it's nice. They haven't required 30 day blood draws yet, so that tells me that his MELD is still below 19. We will go back on the 4th of October and meet with the transplant surgeon, do some other tests, ect, because we are CANDIDATES FOR TRANSPLANT. BOOYAH! This is great because it means that no red flags come up in the preliminaries that disqualify us. YES. Big, BIG sigh of relief.

Soooo, to recap:
Going back on Oct. 4, 2011, for more mtgs, tests.
Being considered for "THE LIST"
Alex is doing better, but could easily shoot up to a MELD of 30 and then life would not be so fun.
Miss E is almost 3!!! We will sending out some kind of invite/evite for her b-day in the near future....please stay posted.

Keep those prayers coming and thanks for those you have already prayed! God Bless :)