25

Hear ye, hear ye--Alex's MELD is 25. Up one point since October. We had a chat with our nutritionist, Cathy today, who reiterated Alex's need to control his blood sugar. He needs to maintain weight for transplant, which is hard when you are not producing proteins the right way. Also hard when you are not controlling the blood sugars and therefore having to convert muscle/fat to glucose to live. Then we saw the liver Dr's (usually 2, a resident and a fellow). We do the run through with the resident (never the same person, mind you) and then re-run with the fellow. I totally respect the need to teach the up and coming's of our medical profession, but...sometimes it is a bit annoying to tell and retell. Just saying... They also reiterated Alex's blood sugar issues. Sooooo--pray for his ability to control his blood sugar! It is really serious and we need your prayers. Miss E has been asking a lot of questions lately about Alex's health. Prior to this she never really did, but now she is asking a lot of questions: "Mommy, what is a liver? What does it do?" "Why does Daddy have to go to the Dr.? Will he have to get shots there?" These are just a few examples. I have taken a moderate-honest approach and tell her as much as I think she can handle. She seems to be doing ok, except that she was really nervous for Alex's appointments today. Maybe no one else could tell, but I could. She did well, was her crazy rambunctious self, and we all made it out alive. One of the highlights of the day was her assurance that Daddy 'still had big muscles' when he was being measured by the nutritionist. Also, today in the hallway we saw a young man who appeared to have had a brain injury relearning to walk. There were 4 people helping, I am guessing one was mom and the others were therapists. Erin was very curious and asked as they were walking by what they were doing. Recalling moments like that I had shared with patients in the past, I said 'His body was hurt and he is learning how to walk again, and that is VERY EXCITING'. I caught one of the people with smiling, and I really hope it was his mom. Those kind and positive words are essential when you are waging a battle like we are. You get so caught up in the moment with what is going on it's hard to remember that things can and will be better. I guess it is not seeing the forest for the trees kind of thing, but in this case it is due to survival and functioning at a minimal base level. I will say a prayer for that family tonight, and I hope you will do the same. In the liver clinic today, there were actually other people there, which was unusual. It was a almost surreal to see other yellow people walking around. In honesty, it was also depressing--they all seemed to looked at us in a weird way and no one wanted to talk to one another. They were older than us by quite a lot, and of course Ms. E was with us. I don't know if they felt really uncomfortable seeing how young we were, or what....but I did feel weird sitting there. I felt that there was a lot of hopelessness in the room, and that is the LAST thing we need hanging around. May the Peace and Light of Christ be within you and shine through you this Advent season.

Advent

Here we are, just past the Immaculate Conception, making the turn tomorrow to the second week of Advent. I love the Advent season, and the things like our Advent Wreath and calendar that draw our attention to the true meaning of Christmas, the joyous birth of our Lord. Especially with all the craziness of shopping, etc. and the consumer driven mentality that surrounds us, that refocus is essential. I had the great fortune of meeting up with an old (20+ years since last meeting) friend this weekend for coffee. She is also walking through a challenging time with her spouse and a health condition. It was a rare and amazing opportunity to speak with someone who truly knows your language (not quite Apostles at Pentacost, but perhaps along the same vein). It was a lovely two hours that passed much too quickly, and I hope we can soon do it again. Since Alex's MELD has gone up, we now go to the UWMC every 2 months instead of 3 months. We will journey south on Tuesday for the routine labs/how-are-you?-oh-yes-still-sick conversations, etc. I will write a follow-up posting to update everyone on the results. We finally our Christmas tree up, which was a two part affair of Mommy assembling tree (fake--easier--can be done by myself) and adding lights and then, the next day after Mass/crazed Fred Meyer shopping/napping (Mommy) we hung the ornaments and had no breaking and it was fun. Please consider the following: Alex is experiencing a great deal of swelling and pain. Please pray for this to subside as soon as possible. Pray for Alex's spirits, he is having a tough time lately emotionally. Pray for some extra graces for me, I will be seeing an ear/nose/and throat specialist for my allergies. I am currently on a dose-pack of Prednisone to kick my immune system down a notch due to some really intense allergy flaring that make me nearly incapacitated (no anaphalactic, but 7-14 days of symptoms after one exposure). SO, hopefully we can get that done soon and I won't have to fear the mold over here so much. Thanks and much love to all! May Advent Blessings abound for you and yours!!

Update, finally

It's been a while... Between all the life-crazies plus our computer's hard drive circling the drain, writing the blog has been hard. BUT, now with a new, awesomely fancy lap top, I should be in blog-heaven (yes, punny, and proud of it!). Sooo, what's new with Clan Douglas?? Me--work is going well. My patient's are varied and interesting, there is rarely a dull moment, and I am learning lot. Additionally, I have reason to cling to the hope I am making a difference in the world...in a positive way, that is, not a Pinky and the Brain 'the same thing we do every night, Pinky' kind of a way...but I digress. We enjoyed a beautiful, nearly rain-free summer here in Western WA. Apparently, it was rain free for over 40 days which set a record. So far this fall it has actually been sunny sometimes, even if it's been cold some days like today (sunny all day, around 45 degrees...yes, I know that it isn't that cold, but for over here it was cool). We travelled only a little, up to Bellingham, down to Everett (the 'big cities') and only to THE city (Seattle) a couple of times. It was a fun and enjoyable summer with a high of 90 twice, but mostly 78 degrees and blue skies--seriously, I think it's what keeps people coming back for more here, since it is rainy a lot of the time. In September, our family marks two important occasions: our anniversary and E's birthday. This year was 7 years of marriage for us, and 4 years on planet Earth for E. Both went well, but I think E's birthday was the true success. She had fun, had 4 'school' friends come to her party, and all and in all had a blast. I love birthday's and love celebrating hers in grand fashion. Considering all that is going on, Alex's making her cake, which is our tradition, was a fantastic effort on his part and we were all proud (Tinkerbelle themed, for those so curious). October brought with it Halloween, of course, and E was Tinkerbelle (of course) and was a)way too cute and b)so excited it was just like we were getting to trick or treat ourselves all over again. Also, it was 60 degrees that night, the warmest weather I have EVER trick or treated in, and we hit the hour of the evening with no rain...doubly awesome. November has of course brought us to Thanksgiving, including the Thanksgiving Feast at E's school. What a great few weeks it has been, but I do always get thrown off when Turkey Day is so early in the month. I am officially ready now for the Christmas season and can stop pretending I don't see all the in-store decorations that appeared seemingly by magic on Nov. 1. I can actually enjoy them. Yay! The docket for this month includes a trip for Santa Pictures, tree lighting and tree festivals, and hopefully a live Nativity Story like we used to enjoy in Spokane. So, as to how Alex is doing, listing, etc. I would first like to say that in this blog I don't always just jump into that because while it's a huge part of our lives, it's not our whole lives. Keeping and enjoying even a sliver of normalcy is such a great blessing. So I like to talk about our fun and maybe mundane things on here, and if you look at them through the lens of living with a serious chronic illness, they are much more impressive when they are accomplished. Okay, so---Alex has been feeling pretty bad lately, with a lot of nausea, vomiting, fevers from small internal infections, etc. It has been a rough couple of weeks. Not bad, because being alive is not 'bad', but I couldn't ever imagine calling these last few 'good', either. I genuinely hope that we don't have to find out how much more 'bad' can come with this yucky stuff before he gets better. We now have all the required stuff for listing. We are waiting to hear when they do the next meeting of all the people involved to see where we are. Right now we really don't much know, we are just waiting. I think there will be a great deal of that for a little bit at least. Some days life is okay, some it is really hard. It is very hard to see Alex suffering with all the gross maladies that accompany his illness. When we talked about this time years ago, we had no concept of what it would really look like. Thanks be to God. If we did I don't know how we would have had joy. This illness crap is a real joy stealer in a lot of ways. Of course, we try to focus on the blessings and be thankful, but it's still tough as hell sometimes. For all of us. Of course, E has the best outlook and a child like faith that makes her presence in our lives all the more blessed. I am learning, by force, to be totally dependent upon God. I don't like it or want it that way, initially, and resist it with great gusto. But once I am able to allow His Will to envelope mine, life is so much better. It's tough to describe if you haven't experienced it, especially since we are so independent and driven in our society. To surrender means defeat to us. We hear the Devil telling us that we are defeated when we give it up to the Lord, and unfortunately we are too often likely to listen. Especially me, since my independent streak runs far and wide. However, allowing His perfect Will to supersede ours and to become completely dependent upon Him is our calling. No matter where you are in the Christian life, laity, clergy, consecrated or religious, that is the equalizer. God wants us to GIVE IT UP. Yikes. That is so scary to me. Needless to say, I am working on it. The second thing I am learning is the value of service. If you have ever hear the of the Joy Approach, it states priority is Jesus, Others, and then Yourself. There is no choice in our life now but for me to serve. I thought I was a pretty good server, but I must say, I had a lot to learn. To be thankful, to be gracious, to resist resentment when it all feels to hard. To sacrifice. On the one had, I feel privileged--what better way to be Christ than to sacrifice oneself for another? It is a great opportunity to grow in faith. Notice I did not say it was a joy. It is hard. It is difficult to keep Satan out when he reminds me that this is not really what I wanted life to look like (neither did Alex, of course!). One of my greatest struggles has been remembering that life will one day be different. It feels like we have been in the same jag for so long that there is no other way to live. So I remind myself often that one day it will be different--pretty much daily. I was unpacking some boxes that had hung over as 'non-essentials' from the move and found all our pictures. It was fun to see how we looked a few years ago. Really awesome to see Alex happy and laughing and healthy. Multiple reminders that it can happen again. They are all going up on the wall tomorrow....many are already put up as knick knacks. Okay, so there is a really long post to catch everyone up. I am sorry to those who thought we dropped off the face of the Earth. We didn't, but our computer is trying to kick it and writing on the 48" TV was to nauseating for me...an we can only have so much puking in this house at once;) Hugs to all--enjoy the Christmas season and remember Jesus!

I like to move it, move it...

Well, not really. Not actually. But what must be done, must be done. And it can actually have some really fantastic fringe benefits. So here's the goods: I have been offered a job as a pediatric occcupational therapist in a great ped's clinic in Mount Vernon, WA ( 6 1/2 hrs from our current home in Spokane). I have accepted, am starting May 14, and we are currently in the craziness of moving--that's the part I DON'T like....but wait! We haven't even gotten to some of the best stuff-- *The people are department I will be working in seem just fabulous, so that is a big plus--anyone who knows our old ped's department knows how great we all were, leaving some big ol' shoes to fill. *We have friends and family in the area to welcome us with open arms (yay!). *The Skagit Valley is truly a beautiful area, close to the ocean, close to.... *SEATTLE AND UW Medical Center! I am VERY excited about the communte time change (currently 5 1/2 hrs-ish) to one hour in good traffic. ONE. As in, 'less life time wasted in driving'. As in, we will not have to rent a place in Spokane and Seattle after transplant. As in, much easier medical scheduling. As in--less stress--and that is ALWAYS good. So yeah, we're moving. With all those goodies it's not to say that we aren't sad about the friends who we won't be seeing as often in Spokane (*sniffle, sniffle, sob*) who are incredible, awesome, and will be sorely missed! We don't know how long this move will be, but that is what is, as the Four Non-Blondes would say, "GOIN' ON".

UNOS

UNOS is the acronym for the United Network for Organ Sharing. It is the entity that helps to ensure that organ donation is fair and equal and that as many people benefit as possible from donations. I encourage everyone to educate themselves on organ donation and make your wishes known to your loved ones who will be called upon to decide to donate (http://www.unos.org/index.php).

In addition to organ donation information, they have beautiful tribute pages for those who have given the gift of life through donation (http://www.donormemorial.org/).

One of the questions we have asked in regards to Alex's transplant is how we can thank the family of the individual who must pass away in order for Alex to receive a new liver and all the things that go with that. It is totally up the donor family to decide if and when they want any correspondence with us. When that time comes, I hope they do, because I would want them to see something amazing come from their tragedy.

I am writing this in part due to processing the tragic loss of someone that Alex and I used to know fairly well. Their family was generous enough to provide others with a chance at life despite their horrible loss for which there is no explanation at this time. I commend them for their bravery, compassion, and kindness. Nothing can bring back the person they loved. As someone standing on the other side of this kind of situation, I cannot pretend to know how they feel or will continue to feel. But I can speak as someone who loves an ill person who will one day benefit from someones sadness. The donor is never forgotten. Someone will get up everyday and be thankful for their life because of that donation. Someones children will have a parent, a parent will continue to have a child. And will the degree of sadness that is inevitably attached to the fact another family will have to miss out on these things ever leave? Not for me. I have no idea when we will receive Alex's new liver due to another tragedy. I do promise, however, to always appreciate it and never forget where it came from.

Dr.'s Visit

So, we made the trip to Seattle on Monday, with Alex at the wheel and yours truly
in and out of fever after a weekend of being sick (again--pretty much devoted all of January 2012 to one upper respiratory infection or another. And with being stressed and not sleeping, well, I was a sitting duck) and getting on a new antibiotic plus an inhaler from the dr. on Monday a.m. I have to say, I was in and out of it for the better part of 3 hrs between Spokane and Cle Elum, which made the trip nice and quick, for me at least. I pretty much continued to feel bad until today.

Anyway, the dr.'s visits were crazy this time, running between 3 different places was less than fun. Parking was not bad but very expensive (total spent for one day of dr appts--$18). Our insurance did not have things in line so that was stressful. We for the first time had a long wait at the UW (1+hr) and then were told that there was a mistake and the lab had not done our bloodwork right, so it was back to the lab, then back to Virginia Mason (where we were earlier for an appt) to get an MRI/MRCP done. Long story long, we left Seattle at 6:30 and got home at 12:15 am. By God's Grace I was able to make the entire drive home as Alex was not feeling good.

Anyway, lots of gripes for this trip. Today we got a call from our main Dr's office letting us know Alex likely has strictures in his billary ducts which have been making him sicker lately. We are going to head over for an ERCP (would explain but it's likely better and faster to google) to dilate the strictures and get him feeling better. Yikes. We are going to rack up some serious miles on I-90 at this rate. Blessedly, my boss is kind and understanding and only says 'Do what you need to do'. Yes, she is amazing, and yes, I am very, very grateful for her!

Please pray for this up-coming procedure. It's not a 'huge' deal, but it's stress non-the-less. Your prayers, for Alex's health and my sanity, are always appreciated!

Afraid

I am afraid. It's not a fun way to feel--and in fact, we are told that it's not how God wants us to feel:

God did not give us a spirit of timidity, but the Spirit of power and love and self-control (2 Timothy:7, emphasis mine--gee, I've always wanted to say that!).

We feel fear for many reasons. A few that come to my mind include:
*the possibility of losing someone/something we love.
*lack of trust in the Providence of God.
*Facing any unknown, which is exacerbated by the second reason.

I am, in fact, facing all three of these things at once. The 'fear trifecta' if you will. And it's soooo ugly! I have a continuous inner dialogue, and for the purposes of humor, and in some ways honesty about the spiritual battle involved in temptation~~

*Ahem* Picture the Buggs Bunny cartoon during which he has a little angel on one shoulder and a little devil on the other. The dialogue goes something like this:

Angel-Everything will be fine. God is in control, NOT you...and you should be glad! You know that some of the things you have desired in the past would have been bad had they turned out how you wanted in your small-view of how things are.

Devil-HA! Look at how hard things are right now! If he (notice that God's name is NOT mentioned because it causes all the demons to cower--yep, just his NAME--make you think about using it for His Glory a little more often? I know that the idea of giving a demon a headache makes me a smile a little...anyway) REALLY loved you SO MUCH, why would He let you feel all the pain and suffering you are experiencing.

Buggs-Well, I know God loves me, and I know He has a plan...but it does really hurt sometimes and I just don't understand why. I keep feeling like if I could just have one less thing to juggle, it would be okay and I could handle it.

Angel-And since God wants you to give it all to Him--until you DO, He cannot help you the way He wants to. He doesn't want you to handle it. He may not remove every burden like you want, but He will give you the capacity to carry them all with His Grace.

Buggs-Yep,Angel, you are right. Any ideas on how we can get this little guy on my other shoulder to go away?

Angel-(giggles)-Yep. GOD,GOD,GOD!!!!

Bugg-Wow, he really did look just that hyena from the 'Lion King'.

And So....

I am going to now affirm the Truth that I know, for all who read far and wide to know about OUR GOD, and just how amazing He is:

*He wants only our GOOD because He LOVES us. We don't deserve it. He did not create human beings out of loneliness or need, but out of love.

*Sickness is NOT in His plan, it is the result of evil in world. He can heal us, but only with our full cooperation of the Will and complete Faith and Trust--which can be very hard to have at times.

*We are precious to Him~

4.Since I regard you as precious, since you are honoured and I love you, I therefore give people in exchange for you, and nations in return for your life.
5.Do not be afraid, for I am with you. I shall bring your offspring from the east, and gather you from the west.
6. To the north I shall say, 'Give them up!' and to the south, 'Do not hold them back!' Bring back my sons from far away, and my daughters from the remotest part of the earth,
7. everyone who bears my name, whom I have created for my glory, whom I have formed, whom I have made. (Isaiah 43:4-7)

Prayer would be very appreciated, especially on Tuesday as that is our appointment day. God Bless you all!!