Wednesday, December 31, 2008

a year in review

First, thank you for your prayers for us yesterday. We had safe travels and overall Ethan is doing extremely well! His potassium was high, and so we have to start him on a new medication to counteract that... which is tricky. It's a high volume of medicine, three times a day, and it has a very strong taste - grape salt water. Needless to say, Ethan is NOT a fan, and attempting to get this down his throat every day, 3 times a day, for the next few months is going to require God's grace - and advil for me. We go to the hospital on Friday to ensure his potassium level hasn't gotten any higher (pray it hasn't), because if it has, he will need an EKG to ensure that his heart is okay (high levels of potassium can affect your heart). But overall, like I said, he's doing fantastically well.

Which brings me to my post today...

Adam and I were talking the other night about the fact that for the first time in either of our lives, we can recall every inch of this year - 2008. That might sound strange, but if I look back on my life, I can remember certain "moments"... special days, or how a particular holiday was spent, a family vacation, an anniversary date, etc... but I can't honestly say that I can recall an entire year. For instance, the year I got my drivers license was 1995. I vaguely remember going to the DMV and I remember driving around town with an excited younger sister, but that's about it. 1995 - I don't remember much about it. Oh wait, that might have been the year my highschool cheerleading squad qualified and went to compete in the National Cheerleading Competition at Disney World in Florida. I mean, come on, for a small Christian school in Texas, that was a HUGE deal, and here I can't even remember exactly what year it took place! Well, what about my senior year of college? Sitting here now, I can't even remember what classes I took the semester I graduated! What about birthdays? There are some birthdays - even in recent years - that I can't remember how I celebrated them. Forgetful? Absent-minded? I don't think so... I think maybe it's more that in years past my focus wasn't nearly as concentrated as it has been this year.

But this year.... 2008.... I remember every day and month of it.

Looking back it seems like it went by so fast in a lot of ways, yet at the same time, I can easily re-live each day in slow motion.

We rang in the new year, this time last year (though I don't remember exactly what we did!), with me extremely ready to deliver the child who had decided to take up permanent residence on my sciatic nerve. Twenty-three days later, he was born. The adjustment period in the days that followed were so surreal and strange. All of a sudden there was this little baby boy, who only slept for 2 hours at a time (I do remember that) and I, Kasey Jean, was his mother.

Fast forward six weeks later to March - that's when I went back to work. Teaching my little kindergartners. Dropping Ethan off at my parents, stopping in to check on him during my lunch break... the whole routine. I remember all of it.

Then fast forward a mere 5 weeks to April 8th. I remember that day. The day. I remember dropping Ethan off at my parent's place just like I had done every day for the previous 5 weeks. And I remember thinking that he wasn't acting right but choosing not to worry. I remember checking in on him during lunch, just like I always had. He was still asleep from the time I dropped him off at 7:00 am and he hadn't eaten yet. I remember going back to work and not being able to concentrate. At 2:00 pm I was administering an Achievement Test for the 8th grade class and I felt an overwhelming urge to leave. A few minutes later, I did. I remember speeding to my parents, grabbing Ethan & taking him to the pediatrician. Crying the entire way, but not knowing why. I remember telling myself he had caught a cold. I remember calling Adam. I remember the pediatrician telling me to go down to the Children's Hospital for some routine blood work to see if he had caught a virus or something. I remember me waiting for Adam to leave work and go with me. I can't bring myself to write what all took place over the next 7 hours, but I remember.

All of it.

Especially the utter shock of hearing, "Leukemia cells are showing up in his blood work. The pediatric oncologist is coming in to see you, he should be here by 2:00 am. Right now, though, we'll need to go ahead and admit your son so we can begin the further diagnosing and treatment."

The weeks that followed.... there in the hospital room. I remember the obnoxious machines that would beep all night long. I still remember the code to the kitchen that patient/family had access to there on the floor. All of the unfavorable statistics, all the chemo, all the information, all the people, all the cards, all of the encouragement.... I can recall it all.

Fast forward again to August. After months of searching, a cord blood donor had been found. The temporary move to Boston (7 weeks to be exact), the radiation treatments, more chemo, more information, more encouragement and more cards/gifts.

Every thing. I remember.

Wow. These tears feel so fresh. Simply remembering - actually unable to forget - still feels like opening a wound. I can still feel now, exactly how I felt going through each step. The tears are still hot as they stream down my face. The tears are still vulnerable. The tears are still in awe.

Yes, I remember this year so well that my tears cannot be contained. But what I haven't yet mentioned is how well I remember the beauty.

  • A thriving little boy who overcame each obstacle put before him... one answered prayer after another.
  • The love and support of family.
  • The love and support of friends.
  • The love and support of strangers.
  • The days we were able to be at home in between initial chemo treatments.
  • Having the life changing opportunity to put faith into action.
  • Believing for a miracle in a way that actually changed my life.
  • Seeing the miracle look up at me every single morning - and all day long.
  • Seeing God work in ways that even my own guilt and fear couldn't stop.
  • Paying severe attention.... Seeing God. Feeling God. Knowing God.... a craving.... more than I ever had before.

Even in spite of our son being diagnosed with a rare form of leukemia (cancer!?) at only 11 weeks of life, I can't say that 2008 was an awful year, because how can you say that about a miracle. But I can certainly say it was unforgettable. In many, many ways.

I don't know what 2009 has in store. I will honestly say that I hope there's a bit more time and opportunity to enjoy life (aka: have fun!) as a family. But, if we are to learn from history, then I walk into 2009 tomorrow with the knowledge that my Lord is exactly Who He says He is... my son is in His powerful hands... so is Adam.... and so am I.

And if you know Him, then so are you.

Luke 1:45 "Blessed is she who believed, for there will be a fulfillment of those things which were told her from the Lord.”

2 Corinthians 9:15 "Thanks be to God for His indescribable gift!"

Thank You, Lord. You know the words in my heart... Thank You.

Happy New Year. And thank you... We cherish what you give and do for our family with your prayers and kindness. 2008 wouldn't have been the same without you.

Tuesday, December 30, 2008

road trip

Ethan and I are heading to Boston this morning for his check-up. Join us in prayer (again) that his electrolytes (aka: sodium & potassium) remain in stable condition - or even better condition! And that the rest of his blood counts continue to look good! His rash hasn't been nearly as inflamed over the past week or so, and that's been a nice blessing. Thank you for your prayers for us today - especially for Ethan. We can't thank you enough!

p.s. - I feel a long post brewing.... I think that with 2008 quickly coming to an end there's a lot on my mind.... it will have to wait until tomorrow, though! I'm off to Massachusetts today.

Friday, December 26, 2008

Merry Christmas, Ethan!

We had such a wonderful Christmas Day!
The Lord blessed us with so very much.
And Ethan got to enjoy both sets of grandparents
and all of his new toys!
All in all, I think little E made
out pretty good for his first Christmas...
and this doesn't include all the
fun clothes & books & DVD's he got!
Although, it is true - he was more thrilled
about pulling at the wrapping paper
(and putting it in his mouth)
than anything else!

Hope your day was just as special as it was for our family!

Wednesday, December 24, 2008

joy to the world!

Joy to the world, the Lord is come!
Let earth receive her King;
Let every heart prepare Him room,
And heaven and nature sing,
And heaven and nature sing,
And heaven, and heaven, and nature sing.
And she brought forth her firstborn Son,
and wrapped Him in swaddling cloths,
and laid Him in a manger,
because there was no room for them in the inn.
Now there were in the same country
shepherds living out in the fields,
keeping watch over their flock by night.
And behold, an angel of the Lord stood before them,
and the glory of the Lord shone around them,
and they were greatly afraid.
Then the angel said to them,
“Do not be afraid, for behold,
I bring you good tidings of great joy
which will be to all people.
For there is born to you this day
in the city of David a Savior,
who is Christ the Lord.
And this will be the sign to you:
You will find a Babe wrapped in swaddling cloths,
lying in a manger.” And suddenly there was with the angel
a multitude of the heavenly host praising God and saying:
“ Glory to God in the highest,
And on earth peace, goodwill toward men!"
Luke 2:7-14
For God so loved the world, that he gave his only
begotten Son, that whosoever believeth
in him should not perish, but have everlasting life.
John 3:16
Merry Christmas!!

Tuesday, December 23, 2008

11 months

Someone is 11 months old today... I'll give you one guess who! And thank you for your prayers for his appointment yesterday. Ethan's counts came back showing everything to be where it should be. His electrolytes (aka: sodium & potassium) still hovering around the borderline, but that's okay. They are still in the "safe zone" and that's all that matters. We're taking another new approach with his skin rash, so hopefully this new cream doesn't further irritate his skin. AND we're taking a different approach to get him to eat more solid foods. Right now, he's still fully on formula - however, not from a lack of trying from mommy! We practice "big boy" food every day, several times a day... he's just not interested (which is to say he screams and throws a fit until you give him a bottle). HOWEVER, we're trying to encourage more "self feeding" items which he seems to take to a little bit better, so I was encouraged yesterday with these new tactics. The doctors want him to be steadily growing/gaining weight and at this age formula alone won't cut it. But again, like I said... we try! Hopefully this approach of "independent" feeding will open his willingness (and his mouth!) towards a more variety of things to eat.

There's always more I could say, but I'll save it for Christmas! However, before I go, I'd like to once again thank anyone and everyone who has ever donated blood, platelets or organs. Lives are changed, lives are sustained, and lives are given another chance at living because of people who donate. Some of you may remember when Ethan was extremely dependent on blood transfusions and platelets just to survive another day. It's a daily miracle that's needed every single day by someone in this world. Our little man being one of those people. So thank you. And let me encourage everyone to give of yourself in this way. Donate blood. Every chance you get. Donate platelets. Give your personal stamp to someone else. I assure you that you'd not only be changing the one who receives it, but the lives of their loved ones.... because there's no words to describe how grateful we were that any time Ethan needed a transfusion of blood or platelets, there was always a supply in his blood type. How grateful we were.

How grateful we are.

Sunday, December 21, 2008

prayer requests

Tomorrow (Monday), Ethan and I will embark on our weekly trip to the hospital (this week it's our local hospital, not Boston) to see how well his counts/levels are doing. I have no reason to believe that his counts won't be excellent, however, it'd be foolish of me not to ask the Lord's blessing regardless. As you may remember, Ethan's potassium and sodium levels have been teetering on the brink of requiring a step of action (meaning a re-admission for a few days to get the levels back to normal and further investigate the root cause of the problem). In case you're curious, high levels of potassium can cause kidney failure and low levels of sodium can cause seizures, can affect nerve & muscle function, and can have affect blood pressure.

Ethan's numbers for each of these electrolytes are in need of a significant boost (in opposite directions!) in order to completely alleviate the very thought of there being an concern. SO with that said, I'd like you to pray once again that today his potassium level would be LOWER than it was last week and that his sodium level would be HIGHER than it was last week. And maybe a prayer that there'd be no other surprises pop up that would put us in the hospital, keeping us away from home over Christmas - or any other time for that matter :-)

Thank you for the blessing of your prayers for Ethan. If he knew how to say "thank you", I know he would! But, his mommy and daddy sure know how and we THANK YOU very, very much!


p.s. - A friend recently brought to my attention, another beautiful child in need of our prayers. Her family's website shows so much strength and dependence on the Lord... but I'm sure there are moments of weakness and fear mixed in as well. The young lady's name is Catie & she is struggling with a very rare brain tumor. I've added her website to my side bar on the lower right with the other children we've been praying for, but will add it here for you as well.

Friday, December 19, 2008

picture time

I thought I'd post some new pics of our soon-to-be 11 month old (the day before Christmas Eve!) I can't believe we're nearly one month away from his 1st birthday!!

Whew... time flies!

In these pictures, you'll see that we were testing out his "big boy" car seat ... ya know, the "front-facing" seat. We think he likes it, but you be the judge (wink-wink).

Oh, and let this be your initial warning. With Ethan's first Christmas coming up next week, and his 1st birthday coming up in January... well, you can imagine all the pictures that will be posted, right!?

For we are His workmanship,
created in Christ Jesus for good works,
which God prepared beforehand
that we should walk in them. - Ephesians 2:10


Tuesday, December 16, 2008

time for an update on my boys again

Thank you so much for your prayers over us. They are certainly being put to good use and I can't thank you enough for your kindness!

My hubby (Adam) is adjusting to life with one fully functioning arm. He's quite a trooper, himself... I see where Ethan gets it from. He has started physical therapy, and though it's painful, he knows that successful therapy will significantly decrease the chance he would need a second surgery. The primary damage is to his index finger, but obviously it has affected the use of his whole hand. He has to wear a fairly large splint, that covers his hand and his wrist, as added protection... but like I said, he's learning to adjust. Thank you for praying for his healing!

As for Ethan, his appointment in Boston yesterday was fairly uneventful - which is GREAT! That means that all of his blood counts and levels were good and we got to go home for another week! His electrolytes (potassium and sodium) are still hovering on the borderline, but they haven't crossed over into needing any action/intervention, so that's a blessing to my heart right now. His rash is still with us, however, my main concern was how it was irritating his eyes and I must tell you that almost instantly his eyes cleared up the day I asked you all to pray. Thank you, Lord!

I've actually decided to take a different outlook on this rash situation. It's annoying to me, but it doesn't appear to really bother our little man too much (now that his eyes are under control), and according to the doctor, this type of rash is extremely normal after an umbilical cord blood transplant. It can be mild to severe, but it's just his body accepting and getting used to the new cells. And when I think of it that way, I'm reminded of the on-going miracle at work inside Ethan's little body. So in an odd way, the rash is a visual aide to help me remember what is going on "behind the scenes"... and really, how precious it all is. I would still like the rash to go away, obviously, but while it's taking up residence on his sweet skin, anytime I feel annoyed at it or how often I have to put topical cream all over him, I'll instead think about what the rash means.... he has new blood flowing through his once cancer-filled body.... he's alive and strong.... his body is working.... God is working.

When I look at it that way, I've never seen more beautiful red patches in all my life.

Sunday, December 14, 2008

I have a confession to make...

No, there's no need to contact the authorities... it's not that kind of confession. But, one that needs to be stated, regardless. I've touched on bits and pieces of this before, but I've not gotten it all off my chest and really - for my own sake - I need to.

Before I get going, I put forth a disclaimer at this time: this post could be all over the place, so fasten your seat belt!

I've mentioned recently that I can be quite reflective. But, whatever it is I'm trying to focus on at that particular time can sometimes come and go as quickly as it takes for a red light to change to green, for a dry diaper to get wet again, or my seemingly content child to get disgruntle (which is sometimes only a matter of seconds)! My train of thought gets interrupted quite frequently in the course of a day. I'm sure most all people could say the same. Except when I'm here. Here, my attention is captured and I'm able to bring all the scattered pieces together, in one place, for me to think about, think about, and think about again. Here, I type and sit. Then type some more. Followed by more sitting, reflecting oh yeah, and thinking. All-the-while trying to "figure it out" as I go. Like a true quiet time for me.

This blog started (and still continues to be) as a giant prayer request for our then 11 week old son who, we were surprisingly told, had a rare infant leukemia. I clung (is that a word?) to my laptop those early days in the hospital last April, pouring out details that we'd learn each day, begging for any eyes reading the words to pray for Ethan's healing. And somewhere in the midst of the requests for prayer, I noticed the Lord morph Ethan's site into much more. It's still a place in which I come to you sweet hearts, asking for prayer over our family, but it's also now a place in which I come to wait and hear from the Lord. My words are only as strong as the truth He has given me. And I sit here tonight, truly amazed at how much He has spoken to my heart through this very site.

But that's not the confession.

The confession is that I've been ignoring a prominent problem in my life. Surrender. Not the type of surrender that would require me giving myself over to the enemy - such as it is in war or something - but surrender (or in my case, the lack thereof) of the "me" factor.

I've noticed it pop up occasionally in the course of my lifetime, however, the true confession is how terrible it has become as of late. ME. It's all about me. Obviously, this is not a pretty picture to paint of myself, but truth be told, it is the skeleton in my closet.

Shall I go on? Unfortunately, yes. Because if I don't do it now, I won't face the fact and deal with the problem... Ethan will need my attention, my favorite TV show will come on, or the phone will ring - anything will and has kept me from owning up to what I know God is asking me to confront. MYSELF.

Honestly, I don't even know how to describe what I'm talking about. So even now, I'm asking the Lord to help me process it all. Basically, I have been getting in the way of being able to have what I claim I know is available to me through God's grace. Peace. Strength. Faith (as opposed to Fear). Joy. Expectation. Anticipation. Hope. A beautiful Future with my Family.

Instead, lately my actions and reactions show that of one selfish, fearful, and "I give up" type of person. Maybe it's hard for another to notice it. Maybe it isn't. Maybe I'm really good at knowing when to smile and maybe I'm not. But whatever the facade, in the deep down darkness of it all, you would see a young woman desperately trying to hold on to whatever little bit of control she thinks she has left over her life and the lives of her son and husband... and you'd find her backed into a corner, with a Louisville Slugger in hand, waiting in a determined panic for Fear to come ask her to join him. And instead of swing the bat at him, she just stands there, buying into every last thing he says. It's not just Fear, though. She entertains Self-Pity, too. In fact, if you were looking closely, you'd see that Fear and Self-Pity looked very much alike. And together, they present a very convincing message:

Cancer has been known to relapse, ya know. We suggest you not get too comfortable. There's always a new trial lurking around the corner. Case in point, you've seen the rock of your family suffer an accident - next time it could be worse - for either of you. So, we wouldn't get our hopes up about enjoying life like you thought you would.

Imagine a much larger version of this diatribe and you can begin to understand how easy it has been to entertain such horrible mind games. There I've been content to be. And on top of that, living with such a selfish, selfish attitude. Being afraid and being so focused on how all of the events that have happened in our life over the past year have affected me - well, suffice it to say, it's not the best combination.

Which brings me back to the word - Surrender.

Whether I've made a decent point here in this post, or not. The root of my being so focused on myself, and so focused on the fearful "what ifs" is that fact that I've been extremely unwilling to fully surrender my life into the Hands of God. Not my eternal life. But my daily life. I've been so scared to "let go" because I've been so afraid of what else He might ask of me. Which leads me to think about all that I want from/out of my life that I've become extremely self-focused. If you get trapped in that train of thought, I assure you, it's a vicious cycle that is very hard to stop.

So... there you have it. Or better, there I have it. A call to surrender the "details". I could tell a fib and pretend that by the end of this post, I've successfully done it. "Thy Will be Done, Lord!" But, if the truth were to make its way from my typing fingers, it would reveal that though I've admitted the problem, I'm still in the stages of the struggle in correcting the problem.

Definition of Surrender: "To relinquish control... To submit or yield... To give over oneself into the power of another."

Oh the details.... the wish lists.... the nervous prayers.... they are all there. He sees and hears every last one. I know He's trustworthy. I know He is. The question is, am I'm willling to let go of what I think is best for my life, my future, my "right now" and fully & finally give Him my willingness.... myself?

Thursday, December 11, 2008

quick update

Ethan's appointment went well on Tuesday. He had to get a shot - which he didn't like - but it's a preventative step against pneumonia and such, so it was good for him. His sodium is borderline too low, and his potassium is border line too high... meaning they are still in the "safe zone" (thankfully!), but are close to a slight dip in the wrong direction. Pray that they each get back to their respective & "appropriate" levels.

And one quick thing, can you pray fervently with me today about this rash on Ethan's face? It's starting to become very red and inflamed around his eyes (upper and lower eye lids) and he's rubbing them all the time - making it worse. Pray with me today that the irritation around his eyes specifically would go away even this very day.

Adam goes back to see the hand doctor tomorrow to have his cast removed and to have an assessment since his surgery last week. He's been quite uncomfortable. Pray God's blessing over his hand and the appointment.

Thank you so much for taking the time to pray for us. I'm so honored that you do.

Monday, December 8, 2008

lady in waiting

I assume it's only natural, given the circumstances we've encountered this year, but in the rare quiet moments I find, I notice that I am quite reflective. My personality is a bit reflective anyway, but lately, even more so. I'm forever looking for the reasons to things. Believing, as I do, that all things enter our lives for a reason, when something strange, difficult, or even earth-shattering happens, I'm looking around - and up - for the reason. What's the purpose of ______ happening to me? What's the lesson to learn here? What is so necessary that such a thing needed to happen to get my attention, mold my life, etc.

However, with this mindset, I tend to over-analyze things as well. Why did I just stub my toe? What was the purpose of me forgetting my wallet at home? As my husband has tried to convince me many times, not every thing that happens in a typical day has a life-changing meaning. True. But, there have been enough life-changing moments in this year alone, that cause me to constantly wonder.... the reason, the purpose, the lesson.

Looking back on my life as a child, a teenager, high school, college, post-college - there's really nothing that I can focus on that has been as lengthy a trial as most of 2008 has been. Sure, I've had embarrassing moments. One of the most embarrassing being when I was a freshman in high school, having just made the Varsity Cheerleading squad. It was Friday. Pep Rally day. We needed two more chairs for the football players to sit in as the principal announced them into the gym to start the "show". I grab the two needed chairs (not the fold up kind - very sturdy chairs), and seeing that our principal was about to welcome everyone to the rally, I run across the gym - from one end to the other - with one mildly heavy chair in each hand. About 1/2 way across the gym floor, I trip. The chair in my right hand goes flying across the gym floor. The chair in my left hand is what tripped me, and I fall directly on to it, its four legs up in the air, and my body perfectly in between them... and sliding across the floor I go. I eventually stop and I just lay there. Nothing hurt except my ego. Did I mention that my skirt was completely raised up and I'm laying face down... so my rear end is posing for all the camera flashes that immediately took place (thank goodness bloomers were a part of the uniform!) Our principal comes over to me (with the microphone) and asks me if I need help getting up.... to which I say "I'd like to stay here". I was so embarrassed that I didn't even want to get up and face the crowd, the football team, or my fellow cheerleaders. Eventually I did, and the whole "the show must go on" took over the rest of the excruciatingly long 40 minute pep rally.... but I was mortified. Come on! That's rough stuff to a 15 year old girl!

And then a few years down the road, of course it's easy to remember relationship drama. The inevitable heartbreak. The kind you don't think you'll ever be able to bounce back from. The kind that makes you remember that STRESSED spelled backwards is DESSERTS!? This scenario has made it's way into my life twice - both in different ways - but neither any less painful to experience, but.... who's counting.... the third time is the charm, right? Right! Adam and I are certainly a match made in Heaven.

And sprinkled throughout the rest of the years, there's the unusual memories of being disappointed by something or someone, being rejected, getting into a fight with a friend over something silly, feeling lost the first day of school, having a problem at work, your car won't start the day of an important exam/interview, and so on.... I can think of a hundred things that have interrupted my "flow" at any given time in my life.

However, this year it's all so different.

The trial hasn't been minor. It hasn't been a result of something I said or did.... or the result of something someone did or said to me. It's not a situation in which I can say "well, this will be old news next week". It's not something I can pretend didn't happen, or ignore until it goes away. I can't reason my way out of it. And I can't do anything to change its existence in my (our) life (lives).

It's a trial of acceptance that I've really never known before - at least not to this degree. Yet, even still, I know that the reason, the purpose and the lesson are more important and needful than I've ever known before. I've not been brought into full understanding yet, and I've also not been brought into a time of full restoration yet.... but I know they are coming. I don't know when the Lord will choose to reveal Himself to me/us in those ways, but I still believe that He will.

I've had a great life. Disappointments, yes. Junk to deal with, yes. Sadness, yes. But the seasons were always quite short. In hindsight, revitalizing change or blessing was always relatively quickly around the corner. But this... this has been a season of waiting. And the waiting has been long. Don't misunderstand, the blessing has been miraculous, but the whole story still continues. How will it unfold? I don't know. But I know we're still being ask to wait. Ethan has been fully protected. I'm in awe of God's power and faithfulness over him. But in the midst of such a miracle, I must say that there has also been pieces of our lives broken in the process. Hear my heart though, I'm overly satisfied (and grateful, and amazed, and blown away, and humbled, and excited, and the list goes on!) with the miracle of my son's chance and ability at daily life. But, deep inside, I know there's more. It's just that we're being asked to wait. Wait on Him. And trust Him along the way. So... I'm waiting. Trusting. For the rest of His rescuing to come. Things have not been easy, but.... I know that He knows. Lately it seems like I do not know much else, but at least I do know that.

He knows.


Sunday, December 7, 2008

winter is here


We had our first snow here in Connecticut today! Ethan got a kick out of looking at all things "winter white". I thought I'd post a few pics of him in his Boston Red Sox winter hat, that he had to wear on our outing to the hospital last Friday. When I was trying to put it on him, he thought it was a game and kept pulling it off!
We had a nice quiet weekend. Ethan's personality is coming out more and more... especially when he doesn't get his way. And Adam was unfortunately quite uncomfortable due to his hand still recovering from surgery. He goes for a follow-up visit on Friday, and hopefully the full cast he is in can be removed and replaced with a smaller splint. If you know my husband, you know that it's a bit difficult for him to lay around all day. He's the personality that must be doing something at all times. So this necessary "time out" is proving a bit challenging for him. We appreciate your continued prayers for his overall healing and swift recovery! Oh, and yes, I did get the Christmas decor up... finally.
My heart is full of things to share, but my eyes are extremely heavy. I do believe it's time for bed. Oh, Ethan's regular "Monday" appointment, got moved to Tuesday. Be in prayer that all is well during that check up AND that they can come up with a new strategy for this persistent rash all over his face & head.
I greatly appreciate you....
God be merciful to us and bless us,
and cause His face to shine upon us,
that Your way may be known on earth,
Your salvation among all nations.
Let the peoples praise You, O God;
let all the peoples praise You.
Psalm 67:1-3

Friday, December 5, 2008

good news

Late last night... very late. As I was trying to fall asleep, I just found myself give in. If it was necessary for Ethan to have to spend the weekend in the hospital, then so be it. We'd make it work. And ultimately, I want him healthy. So I took him in late this morning, not having any idea whether or not we'd be back up there later tonight for his admission. I went on with our day, knowing that regardless, God would work out the details. But of course, secretly hoping that the low sodium number was simply a mistake. I didn't want there to be another issue with Ethan's overall health that would spark further questions and tests over the next couple of weeks. This horrible rash is enough for now. And.... within a couple of hours of his nurse taking Ethan's blood this morning, we got the phone call with the results.

It was in fact a fluke! His sodium showed to be normal today and his potassium even went down another point from yesterday - which is more good news. I was so relieved. So very relieved.

All I've been repeating to myself this afternoon is... when God's people pray...

Thank you for being one of those people. God continues to use you to minister to our family and He continues to provide beautiful answers to our prayers.

Adam is recovering somewhat comfortably.... Ethan is a feisty 10 1/2 month old.... and we all get a (hopefully) quiet weekend at home - together.

Who knows... maybe I'll even get Christmas decorations up.

Thursday, December 4, 2008

thank you for praying

Adam's surgery went well. It took quite a bit longer than we were initially expecting, but that's because when the surgeon opened up his hand (from the stitches the ER set for him last week) he noticed that Adam had indeed cut the tendon running through his index finger, in addition to a major nerve. The tendon and nerve were able to be repaired, but the artery couldn't be fixed - but we already knew that. Thankfully there are two arteries in your index finger, and he only cut one. Because if he had cut both, he'd have lost the finger. So when the doctor said that, I really didn't have a comment, other than, "oh..." (long pause) "okay"..... (long pause) "uh that's a decent amount of perspective, huh". (not my finest moment in adult conversation, but what can I say... I was a bit stunned and thankful that stupid pickle jar didn't slice open both of those arteries! Anyway, back to the point. So the surgery went well. He did say that the way the tendon was injured, Adam will need quite a bit of physical therapy to help it heal correctly. Another surgery may be necessary down the road if his mobility doesn't regain itself completely, but we're going to pray against that needing to happen, (right?)! Adam was in quite a deal of pain when they moved him into recovery, so we were there for a couple of hours as they tried to get his pain level down. He's much more comfortable now, however, it's a different story when those pain meds wear off. All in all, he's doing well. He wanted me to tell you all a big THANK YOU for your prayers for him today. He certainly felt them...

As for Ethan.... well, I'm very happy (and thankful!) to report that his potassium level did in fact go down! We need this to continue over the next several weeks, but it's a blessing to me that it went down since Monday. But.... (don't you hate it when there's a but?!?) his sodium level also showed a very low number - which is not good. Low sodium can indicate kidney problems and cause seizures. I have to take him back up to the hospital tomorrow (Friday) to have his blood work re-done to ensure it wasn't an error from the lab. Since the number is much lower than usual, they are hoping it's just a fluke and that the re-test will show it to be fine (pray that it's a fluke!). However, (don't you hate howevers?!?!) if his sodium is in fact that low, he will have to be admitted for IV fluids and to have tests run to see what causing the sodium deficiency.

Needless to say, this probability did not make me happy. Spending the weekend in the hospital with Ethan, while Adam is at home alone still recovering from a pretty intense surgery... *sigh*... well, doesn't it make sense that I just want to stay home. Of course. I do. And I can't tell you how much anxiety there is at the thought/reality that at any given moment, for any given reason Ethan could be admitted again. I want so much for all of this to be behind us. To focus on Ethan being a little boy and concentrate on his development, milestones, growth. But unfortunately, most of his life, those things have had to take the back seat to a disease that I don't even feel like typing out right now. And yes, don't get me wrong, he has done AMAZINGLY and MIRACULOUSLY well (thank you, Jesus!). And I'm so thankful I could cry! But right now, I'm just an emotionally worn out chick who feels like feeling sorry for herself. Who is letting the thoughts of all that's been taken away from her (being a first time mom & wanting to experience certain things) get the best of her... instead of focusing on all that she's been given.

But don't worry... I've already told the Lord I'm sorry for my attitude.

today's the day

Please say a prayer for my hubby's hand surgery today. He has to check in at 10:00 this morning, and the surgery starts at noon. We're told the surgery should last about an hour and he should be able to go home shortly thereafter. As I've mentioned before, the surgeon won't know the full scope of damage until the surgery begins, so please continue to pray that there are no surprises and that the surgery can be done easily & the recovery, quickly.

Ethan will be having his potassium level checked today - at the same hospital, around the same time - so please also pray that the level has not hit the "danger zone". I pray it's either gone down, or at least stayed the same as it was on Monday.

My heart & mind have been back and forth this past week, somewhere between faith and fear. Not about any one thing in particular, but all of a sudden, about everything. There's a lesson in the midst of all of this for me, and truthfully, I'm hesitant to want to learn it. I actually have much more to say about this, but with the hustle and bustle that today brings, I feel it best suited that I save those thoughts for another day. I guess the bottom line is that I'm really struggling. And it's much more than Adam's injury, or Ethan's on-going monitoring. I'm being forced to examine and accept things that make me uncomfortable - at least, initially. That un-settle me. And I don't necessarily like it. But I know it's necessary. Because if the old Vacation Bible School song is true, then "He's still workin' on me, to make me what I ought to be".... and in all honesty, I know that He is. But I feel my need for "control" being asked of me. Among other things. And if you want to know a secret, I'm having a very difficult time with it all.

Pray for my boys today. I can't thank you enough.

Monday, December 1, 2008

update on my boys

Thank you all for praying for our little family.

I'll start with the hubby.

Adam's appointment with the surgeon went well. The doctor did a basic analysis of Adam's hand/finger movements and Adam seemed to have responded well. He will be having surgery this Thursday in an effort to repair the nerve damage (not much can be done about the severed artery). The doc seemed to think that Adam would be able to have almost all of his function & feeling back in his hand - which is great news. We're not sure what his actual recovery will look like at this point, though. The doctor will know more when he's able to look inside the wound during the surgery on Thursday. Please be in prayer that he finds no "surprises" during the procedure and that the surgery is successful, with no complications. My mom will be able to stay with Ethan so that I can go with Adam to his outpatient surgery. Be in prayer that nothing crazy randomly pops up with Ethan that would keep me from being able to do this.

Now for the baby.

Ethan's appointment in Boston went well. His fluctuating low-grade fever seems to have subsided for now. We're assuming teething to be the culprit, but it doesn't matter the cause if the temp gets up to 100.4 he has to go to the ER for antibiotics regardless. Thankfully, this didn't have to happen over the weekend. All of his blood work showed an increase in number which is great and overall he's doing well. The rash is thought to be a result of his body still in the "accepting phase" of the donor cord blood. The prayer is obviously that it goes away, but also that it doesn't get any worse. His face and head are quite covered with these little red bumps and blotchy red patches. There is one area of concern right now that's more important than the rest. Ethan's potassium level is quite high. If potassium in your body hits dangerous levels it can cause problems and damage to certain organs, etc. He's about 2 points shy of hitting that level so your prayers for this would mean a lot to me. The assumption is that his new antibiotic is causing the problem, so we're doing a "test" this week to see if the theory is correct. Pray that we find the cause of the elevation and that we can get it back under control without much problem. Other than that, our little trooper is doing very well.

And for the mommy?

Well, to say that I wish there were no more curve balls in our life for a long while, would be an understatement. I won't lie. Even though there is significant amounts of good in our lives, there is still so much of this that is, at times, difficult to endure. The daily care Ethan requires for his transplant recovery can be quite taxing. I can find myself frustrated & exhausted at the routines & restrictions that no family would like to know as well as we do. I have moments where all I want to do is scream. I have moments when all I want to do is cry. And then I have moments where I realize there's so much I am thankful for. I could go on, but I imagine I'd just be saying the same thing over and over. The bottom line for me is that unfortunately I've been made intimately aware that disease, freak accidents, things you'd never invite to be a part of your ideal "life" - are unfortunately possible. And there's a fear that lurks into your being when you've been exposed to those things that leave you asking "what's next", assuming (like only fear can do to you) that there's "worse" waiting for you around the corner. It's a dangerous mindset to let yourself sink into. It's a deep pit. And though it's easy to trip and fall into it, thankfully (thankfully!), there's a Ladder. He is the Ladder. God Himself. And He makes a way for you to escape the pit of fear, no matter how many times you fall into it. And lately, I've been falling into it quite a lot. But by His grace, He never lets me stay there for long. My self-pity, my paralyzing worry, my scared mind - stops - just long enough for me to hear Him say,

"My grace is sufficient for you..."

prayer, please

Just a quick reminder to ask for your continued prayers - especially today. Adam has an appointment this afternoon with the hand surgeon to find out the details of his injury (in case you didn't see the post below, Adam cut open his hand, from his index finger down to his thumb - down to the bone and cut an artery and a myriad of nerves on Thanksgiving morning... neither his hand or his arm are functional right now). Pray the doctor is thorough and wise in his assessment of Adam's recovery and "next steps". Pray for quick & easy healing of his hand! We're very thankful the wound remained stable with the 18 stiches, over the weekend. Please also be in prayer for me and Ethan's visit to Boston today. Ethan has struggled with a low-grade fever all weekend (leaving me worried that I'd be having to take him to the ER at any given moment!) and his now month-long rash continues to spread in random places over his face/head/abdomen/arms/legs. He's also been refusing to take his necessary "by mouth" meds lately, making things quite difficult.

And... if you have any prayers left... say a prayer for my sanity.