Thank you...

for saving my son. For giving him part of you when I couldn't.


For helping me to NOT take any more pictures of leaking hemo catheters that cause surgeries and blood transfusions and emotional chaos. Thank you for giving my son the chance to live OFF of a machine. Thank you for letting the only fluid that will be leaking out of him be the prettiest yellow, instead of red. :)


Because of you - I get to keep him. Because of your heart, he'll have a working kidney. Because of your unselfishness, I get to be selfish and keep him around for many more Christmases to come. Because God placed you into our lives, into my aunt's life.


I'm speechless...I'm grateful...I'm touched. Thank you God. Thank you Marie.

Resolutions

I know - we make these every year and by Jan 15th...we conveniently "forget" about them. Well, this year instead of making broad and generalized things, I will be specific. No more, "Being healthier", no more "improve my patience", and no more "increase family time". Care to have a go with me and share yours? We could hold each other responsible. :)
And we're off! First resolution of the year - to play at least one game with BOTH of my boys each day. It can be Candyland, tag or balloon bump (made up game that me and William do). No excuses of being tired, having a migraine or too much to do today. My kids are worth more to me than folded laundry. I need to treat them as such. And unless it is raining, we will spend a certain amount of time outside every day. If it is too hot for Matthew and I'm worried about fluid loss, Matthew and me will hang out in the garage with the door open while we watch big brother ride his new scooter and me and Matthew play with sidewalk chalk or something together. Fresh air will be key to Matthew's health now. Gotta get in the habit of doing it...even if it feels like 120 degrees out there. Fresh air every day!
My second resolution, no yelling. I've often said I would be more patient - HA! This year has tested that more than any other...and when I get to the end of my rope and am hanging on by tattered/frayed threads...I yell. I yell for William to find his own toys himself. I yell at Ian for being 10 minutes later than he was supposed to be. I yell at Downey...well...ok, that one probably won't change if she still takes food out of my kids' hands! Downey OUTSIDE!!! ;) But I don't want to yell anymore. The "teacher" in me can sound very commanding and I know it freaks out the kids...so no more. This one will be hard!
Third resolution, no more "bad" language in the car. William has said his first "questionable" word...oops. :( So, mommy will do better. I know this is going to be hard...especially driving in and out of Atlanta. I mean come on - I-75 is FULL of idiots. BUT, I will control myself. Bring out the "substitutes". Yes, everyone knows what dangit means, but at least my three year old isn't saying dammit to his grandmother! :) I will behave, I will behave, I will behave. BUT, I'm allowing a relapse if I'm in the car alone. :P
My forth and final resolution is to finally put my health at the forefront. Once we are settled into our new routine of kidney transplant family, I will start taking care of myself so that I am around to take care of them for awhile. Yeah, I could say I'll eat right and exercise, but....BAHAHAHAHA! NOT giving up donuts and ice cream! SO, I'll keep up with my doctors. I actually GET a nephrologists for myself. Keep up with my electrolytes and creatinine (not like I do not have adequate experience with this!!) At my transplant evaluation, I was told my creatinine was 2.1. SO, I'm NOT worried at all. If Matthew had that - I'd jump for joy! :) (normal for ADULTS is .6 to 1.2, so I'm not high at all thankfully!) But, it is my goal to remain dialysis free until both of my children get married. No catheters will be taped up during the wedding pics! But to do this, I've got to stay on top of things. My vitamin D and iron are low - but easily fixed with supplements. No biggee. I'm fortunate that this was caught during stage 2 - where it is NEVER caught! (thank you Matthew) :) So, I have a good chance of staying ahead of things hopefully.
So, those are my specifics for this year. Nothing I shouldn't be able to handle. Here's hoping 2010 is a bright, happy and HEALTHY year for my little family and your's too. Happy New "kidney" Year!

Music for my soul

I need music. Music is a form of prayer to me. It speaks to my soul when I'm too close minded, frustrated, hurt or checked out to listen to others. I kind of checked out this afternoon. Just went to my bad place of hugging my knees to my chest as sobs came freely. It is therapeutic...but I'm a mother and can't do it often. Matthew was taking a nap after we got home and William was decorating a gum drop Christmas tree with my father in law. I had a minute to myself...and lost myself. Lost my will. It's back. I'm back. I'm ready to fight for my son...for his rights. To move things along and take things as they fall. Just writing down some of my favorite lyrics for days like these:

Little Wonders - Rob Thomas

let it go,
let it roll right off your shoulder
don't you know
the hardest part is over
let it in,
let your clarity define you
in the end
we will only just remember how it feels


There can be Miracles - Prince of Egypt

In this time of fear,
When prayer so often proved in vain
Hope seemed like the summer birds
Too swiftly flown away
Yet now I'm standing here
With heart so full I can't explain
Seeking faith and speaking words
I never thought I'd say

There can be miracles
When you believe
All hope is frail
Its hard to kill
Who knows what miracles
You can achieve
When you believe
Somehow you will
You will when you believe


The Prayer - Celine Dion

I pray you'll be our eyes, and watch us where we go.
And help us to be wise in times when we don't know
Let this be our prayer, when we lose our way
Lead us to the place, guide us with your grace
To a place where we'll be safe

And of course the song I always go to when I think of Matthew. The song I included on his section of the Christmas video I did on my boys last year. Oh how I love my gift from above. :)

Winter snow is falling down
Children laughing all around
Lights are turning on
Like a fairy tale come true
Sitting by the fire we made
You're the answer when I prayed
I would find someone
And baby I found you
All I want is to hold you forever
All I need is you more every day
You saved my heart
From being broken apart
You gave your love away
And I'm thankful every day
For the gift
Watching as you softly sleep
What I'd give if I could keep
Just this moment
If only time stood still
But the colors fade away
And the years will make us grey
But baby in my eyes
You'll still be beautiful
All I want is to hold you forever
All I need is you more every day
You saved my heart
From being broken apart
You gave your love away
And I'm thankful every day
For the gift

The one I keep starting over

I've been trying to type this post for about two weeks now. And MY...how the weeks have changed things around here! In the course of 11 days I've gone through fear, anger, relief, elation and doubt. Two Wednesday's ago (Dec 2nd) my son was rushed to emergency surgery when his hemo-catheter was pulled loose. Yes, the catheter that runs straight THROUGH his heart. And yes, the same catheter that was replaced on Nov 3rd the previous month. Needless to say, I didn't take this well...at all. Luckily, for Matthew's one year hemodialysis anniversary, Matthew's new catheter worked much better than the tiny one placed in his little 5.6 kilo body the previous year. I was still a mess that we had made it to his one year anniversary. Yet another milestone most babies under the age of one never see on hemo...Matthew has fought his way through. With congestive heart failure, fluid build up EVERYwhere, two bouts with sepsis, numerous clots and catheter issues and three surgeries for perma-catheter placements... I think he's pulled his load enough this year (without even touching all the stuff he went through before hemo!). Time to go after the transplant team! I called for a team meeting immediately to make sure everyone was on the same page.

Guess what? We got a pager. :) Guess what else? Our potential donor (remember St Marie - donor number 4) passed her kidney test screening (that no one else has so far)! OK...one more. Guess what again? Marie has been "rush ordered" for her next testing/screening. It will be THIS week. THIS Friday and Saturday!! Do you know what that means? We are almost DONE! That is the last part! We are fortunate to have a donor in GREAT health and she really takes care of herself and exercises regularly. The only possible "kink" could be the number of veins feeding her kidneys. We want ONE juicy big vein!! If there are more than that, the surgery is off. :( Nothing that can be controlled or manipulated...so fingers, toes and eyes are crossing in our family this week. We could actually KNOW if it will work out before Christmas! :)

I'm really not trying to let myself get too excited. It seems little Matthew has a knack for finding good fortunes only to be kicked in the kidney so to say. I don't know if we can take another hard knock. We will of course...but it won't be pretty. We are really hoping for a Christmas miracle. A true gift from God this year. He gave life to His Son, now I'm asking that he keep my son alive.

As we say in the kidney world, Matthew appears to be "fading" a little bit more each month. Yes, he is still happy and active, but the cost is more medicines and longer dialysis. We have been talking four days a week soon. I don't want it to come to that. I don't want my son plugged up to a machine more days than he is not. It gets to be the question of am I doing this for him or for me...

We do have an "out". If sweet Marie can not donate for some reason, Matthew gets listed for ALL matches. Remember that pager I mentioned. I'm honestly not expecting a page before Christmas since we are only listed for a perfect match...aka - his twin kidney! It happens, but it is rare. So placing him on the "anything" list, the docs think he will have a kidney by February. So January for a living donor, February for an angel donor.

This could be the end of our way of living...a way of living for over a year. I don't know any other way. It is both exciting and frightening. The trading of one set of problems for another. Trust me...I'd much rather have the transplant problems any day! :)I'm just nervous. I know what I'm doing now...pretty confident in my day and my knowledge. Soon, everything will change.

I'm getting ahead of myself and I'm rambling. I tend to do that when I'm nervous. I think this post has ended up being more for my mind than to keep my friends in "the loop". I do have a couple requests please:
Please keep our potential donor and her family in your prayers as she gears up for testing. Give them all peace, comfort and health during this time. It was SO much easier when I was the one to go under the knife for my son. That's what every mother should volunteer to do for their child. Take away the pain. But when someone else comes forward...it really leaves you speechless and grateful! (not to mention teary-eyed...often!) And please pray for Matthew. It is every mother's dream to see their son grow up healthy and strong. I don't want to bury a child. I can't imagine the pain. This surgery has the possibility of saving my family from that nightmare.

This surgery can give me the dreams of motherhood. A toddler that toddles without rickets holding him back, a child that has the option to be a picky eater because nothing is restricted, the freedom to stay home on rainy/cold days instead of fighting traffic to get to dialysis. I can be mommy more than nurse. Yes, I will still play nurse...I will always play nurse. I don't mind that. I just don't want him to play the "sick" boy anymore. I want a healthy boy for Christmas...please God...give me a healthy boy. Give him a kidney.

Meet Aubrey

I was working on an entry about premature awareness month for November, but then something happened. Something bigger than me, bigger than my small "platform" on prematurity (it will be coming later this week). Little Aubrey. Aubrey is an angel on Earth and if the insurance companies wouldn't spin out into oblivion by looking at how costly it would be...I'd promise Matthew off to her. :) Look at this face and just try to deny how cute she is!

I had the great joy of meeting sweet Aubrey this spring at Egleston. I was dear friends with her father in high school, but like with most friends...with the passing of time and the building of our families...will lost track of each other. I never dreamed I would meet Jeremy once again on the transplant floor of all places. It was both wonderful and awful to see him. We caught up 8 years in the thirty minutes before Matthew's dialysis run. And Matthew and Aubrey waved to each other in their respective strollers. I know God brought Jeremy's beautiful family back into my life for a reason, though I wish it could have been the fact that our kids were on the same soccer team instead. I know the doctors, I know the nurses, I know transplants...maybe I could give them some knowledge...in anyway possible. However, I don't know pediatric cancers.
You see little Aubrey is a big fighter. Late last year she was diagnosed with a very rare tumor called a Rhabdoid tumor. Her poor body endured numerous months of chemo before she was finally given the sweetest gift - the gift of life from an angel with a signed donor card. This summer, Aubrey was finally declared cancer free with the help of a liver transplant and God's healing grace. I shared Aubrey's miracle with my friends and family and all rejoiced for her and with us!
Last week, Aubrey's parents noticed some sort of mass in her abdomen, and after calling the transplant team, thought it was likely to be a hernia. After transplant clinic a few days later, it was determined NOT to be a hernia. It is "something", believed to be the Rhabdoid returning. Tests, biopsies and surgeries will follow this week with an official diagnosis.
As most of my friends know, I rarely ask for prayers (especially for myself or my family), but I humbly ask you know to pray for this family.

This loving, Christian family that has already received one miracle desperately needs another one right now. Please pray that the tumors are benign or that the tumors are a less agressive type, an type that responds to medicine and chemo quickly. Please pray that God will keep this family enfolded in His strong arms. Pray that both Michelle and Jeremy find wisdom, hope and comfort in the days and years to come. Pray that older sister Maddie finds security and happiness as her family is once again torn between two places. And pray for complete healing for Aubrey...here in her earthly home.
God, I know You have this all mapped out already...but please allow us a selfish request to keep an angel on Earth with her family. Help her story and her fight unite people to better love and serve You as You perform yet another miracle through her. Please God, encourage others to give their time and money to various children's hospitals through out the country this holiday season in honor of Aubrey and her past battle, her current fight. A big request, for a small person. Lord, hear our prayer.

Trust in the Lord with all your heart, and lean not on your own understanding; in all your ways acknowledge Him, and He shall direct your paths. (Prov 3.5-6)

Miracles

Miracles...I don't use that term loosely. Pretty much the only time I "regularly" say miracle is when referring to a certain Christmas movie with that word in the title. So, what is a miracle: 1. an effect or extraordinary event in the physical world that surpasses all known human or natural powers and is ascribed to a supernatural cause. or 2. such an effect or event manifesting or considered as a work of God.
Earlier this summer, my husband's grandfather was diagnosed with a rare bile duct cancer, cholangiocarcinoma. He was given his "time frame" and told to enjoy his family. This cancer was often too hard to fight.
Last week he went to the doctor and had a scan. The previous scan he had had a little over month ago showed that the chemo was helping the tumors (he had many small tumors everywhere in his liver too) not grow, but they weren't shrinking either. This scan showed - NO tumors at all...even in his bile duct! Needless to say the doctors (and all of us too) were shocked and thrilled. Our family miracle was celebrated this weekend when the boys got to play with their great-grandfather). William always asked him if he was still sick every time he saw him, but this time grandaddy finally said "all better". :)
I can't wait to finally report Matthew is "all better". We are still waiting on our miracle, but have received SO many. It is so odd that yesterday I was talking to a friend about how all the surgeries/treatments that were supposed to help Matthew - ended up causing some sort of damage either short or long term. But all the surgeries/procedures that were likely to kill him - were the ones that saved his life.
Please God, as we come up to the one year anniversary of hemodialysis (another statistic that most babies do not live to see), I ask that You protect my son and keep the doctors wise. Keep our potential living donor (that finished her phone interview from Emory yesterday!) in Your embrace and protection. I really want to have a New Year's resolution of keeping my boy's gently used kidney healthy. I know things are at Your time, and I am waiting. Waiting both anxiously and patiently for a miracle.

Five for Friday with mama m

So, welcome back to Five Question Friday!! The fun little carnival to get to know one another and have a little bloggy fun!

Rules: Copy and paste the following questions to your blog, answer them, grab the MckLinky Blog Hop code, and link up! I would be ever so grateful if you'd link back to me...Mama M!

What's that?

You don't have a blog? Well...just answer the questions in the comments below!

Let's get started!

Questions for 11/13/09: (Thanks to Sandy for her question and to Liz for inspiration--I tweaked her question a bit!!)

1. What is your favorite "eat" on Thanksgiving?
I LOVE green bean casserole. We just don't have it any other time other than Thanksgiving or Christmas, so I stock up on it then.

2. What is the name your best girl friend and the best trait about her or how you met (or heck, both!!)
Audrey, (she's my sister). She introduced me to my husband...so she kind of rates high due to that. ;) Her only down fall...she's a Dawg fan, but no one's perfect (except Georgia Tech fans) :P

3. What would you say is one of your "weirdest" quirks?
Man - I EAT WEIRD! Weird things, weird ways - like a slice of cheese, bbq potato chips and sweet pickles all ON one sandwhich with mayo. ;) I eat candy outside to inside...taking off the sugar coating (like M&M's) or the chocolate covering of peanut cups and butterfingers. But that's not what I wanted to share. ;)
I twirl my hair - weird - not really. BUT I have some sort of oddity for "soft" things. I twirl my hair, when I'm bored, content or frustrated. But then I take my newly twirled lock and rub it underneath the "pucker" of my lower lip...and it feels like silk. I don't know...what can I say...I'm just weird. :)

4. What is your favorite genre of music? (Hip hop? Classical? Rock? etc.)
I will listen to everything but opera and rap. I am mainly a top 40's, southern rock kind of girl on the whole though. But the Georgia Tech defense has put another song that I normally wouldn't be singing in my mind lately "All the way Turnt up". It's their "pump up song" on big 3rd downs...and it's catchy.

5. Are you a Night Owl...or an Early Bird?
Both - not by choice. Mainly - I'm just tired.

I am thankful

I am thankful that Matthew's surgery allowed him to be in patient for 10 days so we could learn about some potentially dangerous complications due to his high blood pressure. I knew high blood pressure over the long term was bad, but no one expected it to get so bad so quickly. Matthew's heart is damaged, but not irreversibly. With new meds, (and a new kidney, minus TWO crappy kidneys) Matthew's heart will be repair itself and be just fine. But they will monitor it now. If things go from bad to worse, we get listed...no more waiting. Without being in-patient -they would not have caught the fluid in his heart, in his lungs and the thickening of his ventricles. But we caught it...we caught it...it will be ok. I am thankful!



I am thankful we got a larger catheter...which makes for a smoother dialysis. With smoother dialysis...you get less alarms. Alarms cause the machine to stop...when the machines stop, the blood isn't getting clean. Matthew's blood is the cleanest it has been for a while! The day of surgery - his creatinine was 7.8, now it is 2.7. :) This mommy is thankful AND happy! And so is Matthew. :)



I am thankful that Matthew smiles the brightest smile for me when I need it. I took the hospitalization a lot harder than he did! Everyday to be told "you'll go home tomorrow", only to be re-told "well, one more night". To be given discharge papers THREE times and only for one of those to actually hold true! VERY frustrating. But that smile...made it worth it. Bad food, no sleep, 5am labs and REALLY having to relieve your bladder right as the doctor, intern and resident ALL walk in to do each of their separate spills. I'm thankful Matthew is so happy...he makes me happy.



I am thankful William is strong and healthy. I am thankful that I don't take his health for granted anymore...I just realize how blessed I am to be a mom to a "normal" extraordinary kid. He still surprises me with his intelligence and sense of humor. His athletic abilities are gaining too. Hmmm - dare we say track star? This boy rocks my world everyday. I'm thankful to be his mother...and that he tells me he misses me when I'm gone (even if it ends up making me cry afterwards).



I am thankful for unexpected detours that lead to wonderful family memories. I am thankful I can't plan it all, but can enjoy every second. I'm thankful for my family that God game me. For a supportive husband that lets me cry on his shoulder or come home from the hospital so I can spend some time with our other son. I'm thankful for my parents that came up to the hospital EVERY evening so that I was able to get a "break" to take a shower, take a nap, take a breath. I'm thankful for my "family" friends that lifted us up in prayer and my special "big sis" Robin that even drove down to visit us. Yeah, my family is kind of...wonderful and for that...I'm thankful.

Extremes

Found a loop-hole in the Children's healthcare system and am able to do a quick post as Matthew just went down to bed...hopefully. Yes, we are still here, but more on that later (see his caringbridge site for full updates).
Being in patient, I was able to witness a beautiful moment today. The first steps into a new life. A liver patient received his life saving gift over three weeks ago. Since then his tiny 8 year old body has been wracked with pain...mind numbing, gut wrenching pain. The doctors finally listened and reopened him to find a MASSIVE infection growing right next to his new liver. If left in much longer, the liver would have not made it. He arrived up from PICU yesterday. This afternoon, he took his first steps down the hallway...steps into a longer, healthier life full of possibilities. Everyone came out of their rooms and even the nurses and techs stopped to watch and then clap. Teary eyes were abdundant! It was beautiful!
Today I found out my son was developing congestive heart failure. Something a mother doesn't want to hear about in the first place, let alone on a child that is 16 months old. When they placed his new catheter, they ordered a chest x-ray to make sure the lungs weren't nicked and they were in the right artery/vein in his heart. They found fluid in his lungs. The next day they ordered an ECHO and an ultrasound of his heart. They found more fluid and that his ventricles were enlarged and thickening. He has had dialysis every day this week so far and will continue to have it every day until he is well enough to go home. They are drawing off as much fluid as possible. He has lost 2.5 pounds of fluid in two days. Blood pressures have come down from dangerously high numbers like 180/122 to 138/74. It's working.
He's not well enough for a transplant...he's not even well enough for them to put tubes in his ears like they thought they would do while we were here. But he is happy. He is smiling. He is "talking". He is pointing out every balloon in the hallway and picture on the walls. Everyday they have given me "worse" news by lunch time, after their earlier diagnosis of "maybe you can go home today". No, as much as I don't like to admit it...Matthew is a very sick little boy right now. But he is getting help! They are doing all they can for him, ordering procedures, radiology and labs to figure out this little puzzle that is my son.
If you had talked to me this morning, after getting 2.5 hours of sleep, you would not have recognized me. I have extremes...highs and lows...always been that way. I do tend to cover things up with my dry sense of humor...but those that know me can see through that. I was hurting for my son this morning. Hurting for his future and how unclear it suddenly was becoming.
Then I saw David, the 8 year old, and he inspired me. Kids do the darndest things, but inspire is not usually a word associated with an 8 year old. Crazy, overwhelmed, frustrated...those I hear more frequently. But I see little David and how far he has come and I look at Matthew and see how far he has come. From the threat of termination to the treatment of a transplant waiting in the wings. He's a fighter. And no diagnosis is going to keep him down! He won't allow it. I won't allow it! No need to hang my head and cry (hello - we all know Atlanta is a little flood happy at the moment). So if he is refusing to throw in the towel and start all the "why me's?"...well, why should I? We are going to keep pushing through until he is well and receives his transplant. We are going to fight this new battle because I'm a mom of a soldier boy. We are going to laugh and say statistics be damned, because they have never meant anything to us before as Matthew has always been the exception. We are going to go from one extreme of poor health to another of optimal health...because that's all we can do.

Hidden

Look out the window? See Mother Nature's display. God is painting the trees again. Beautiful isn't it? Did you know it was there all along? These fiery reds, striking oranges and vivid yellows...all hidden away under a peaceful shade of green. Yes, anthocyanin and carotenoids are there the whole time, you just can't see them. They need a catalyst to show their true colors and certain situations (dry, warm summers followed by cool, wet fall nights) will make the show even more spectacular. But I'm not going to give a science lesson (darn huh) ;). Just know I did very well in my plant physiology class and have a ton of respect for all the plant processes, that when broken down seem more complex than anything I do during the day!
Hidden...we keep many things hidden in this house.
Feelings are hidden to protect others that "haven't been there before"...to make it look like all is fine and we are coping. That having a medical needs child does not put a strain on a marriage while one partner fights for a child and the other fights for the couple...never at the same time, so always at odds. That others don't have to tip toe around us for fear we will cave in to depression or anger or finally snap. Feelings that we can not show enough gratitude to all who have made us feel special yet normal. Seriously, you'll never know the depth of love for you in our hearts.
But, feelings are expected to remain hidden...they are personal. Each person copes differently with feelings. I'm fortunate enough to have an outstanding husband that doesn't let me clam up and sulk...though I want to! He makes me talk things out and feel better while crying on his shoulder and snuggling in his protective arm. It feels so good to be there...protected. *I have a secret to share with you* <(whispering) I sometimes climb into my husband's arms, he scoops me up like a child and I wrap my body around his and stay there for minutes on end> I need that when I feel my most vulnerable. I need to be enclosed fully to finally feel protected from all the crap out there that is heading straight for me.
And now, I'm going to do that to my children...and we are ALL going to hate every minute of it. :( After this weekend, we are going into hiding. We ARE in hiding already...kind of. To the point that we are not going to the kiddie places or high crowd areas. But now we truly will be hidden. I will allow one final hurrah so to say with trick or treating in my in-laws neighborhood and then my dad's birthday the next day with the cousins...but after that...no more. :( Of course we will see the grandparents, but we can't be around kids of school age - pre-school through college. It's all school and school is just another name for educated germs. Matthew will not be allowed to move ahead with transplant if he has so much as a cold. He NEEDS a transplant. Those sweet potential donors are trying their hardest to get him one. We should find out in about a week. :) If no one is a good match, Matthew will be listed.
Here's how it goes, Egleston will not list a baby (especially one that is about to reach his one year dialysis anniversary) while he still has living donors going through the process of testing. A baby that has been on hemo for that long, with a common blood type, will get a kidney within a month - tops. whew! I was one relieved momma after I heard that! Living is better - will last longer, will work quicker, but a cadaver kidney still saves a life and honors an angel.
So in order to protect my family, I have to PROTECT my family. I know this will be hard. I'm not all that happy about spending day and night at the house. I just want to cry thinking about William not seeing any friends. It makes me so sad that Matthew doesn't get to experience sights and sounds that every other one year gets too. But if I don't, he might never get to experience anything. He can't experience much from a crib in the dialysis or from the PICU hooked up to monitors and IV's due to an infection/virus. I KNOW this is going to tick off some people...especially come Thanksgiving and Christmas...but they will just have to get over themselves. They are big girls and boys that need to act like that. If the shoe was on the other foot, they would do the same thing. Family comes first, my sons come first! We will spend both holidays quietly at home. And we will miss the extended family and friends VERY much.
But in doing this THIS year...in remaining hidden...image the wonderful display NEXT year when we come out. When the catalyst (transplant) occurs and Matthew is free to show his true colors that have been hidden behind the red and blue catheter lines. When he shows us what a kidney can really do! Be on the look out - God will be "painting" the picture of pure health! :)

Last Christmas, Matthew and William in front of the tree.

Five for Friday w/ Mama M

Rules for Five Question Friday: Copy and paste the following questions to your blog, answer them, grab the MckLinky Blog Hop Code, and link up! I'd be ever so grateful if you'd link back to moi, also! If you don't have a blog, but wanna participate, I invite you to answer in my comments!

1. Whats your favorite horror movie?
I'm not really a horror movie kind of girl. I mean I've done the Poltergeist, Stephen King movies and some of the Jason's. But I can't do much more than that - I CAN NOT do demon movies. Sorry...too real for me. The only movies I really don't have a problem with vampires. Interview with a Vampire, Blade, Dracula - all good. So I'll cheat and go with a genre and say vampire movies. :) (and even though Twilight isn't really a horror - it is my favorite) TEAM EDWARD!!

2. Bath tub or Hot tub?
I'm going to say bath tub, though I love hot tubs. Public hot tubs are just the nastiest, germiest mess. I don't want to cook in someone else's body stew. Ewww.

3. Do you prefer to view a movie at the theater or at home?
Depends on the movie. I love comedy and action movies in the theater. But dramas (where I know I'm going to cry) or horror - I prefer to watch in the privacy of my own home.

4. If you could chose a maid, cook or chauffeur, which one would you choose?
I thought I would always say maid, but CHAUFFER. I HATE/LOATHE/DESPISE driving in Atlanta traffic 64 miles, one way, to and from the Children's hospital. It can take anywhere fro 1.5 hrs to 3 hrs to get there in the mornings depending on accidents and if it is raining. Yes, I would LOVE a chauffer!

5. Electric Slide, Boot Scootin' Boogie, or the Macarena?
Lord, really...I have to pick? I guess the Electric Slide, but only at weddings. I do remember doing the Macarena at all the high school games. I was on the highschool dance/flag team and nerdy, so it was allowed back then. Not now. ;)

Candles

2 Corinthians 4:6
For God, who said, "Let light shine out of darkness," made his light shine in our hearts to give us the light of the knowledge of the glory of God in the face of Christ.

Today is Pregnancy and Infant Loss Remembrance Day. Today people throughout the US and Canada will unite and light candles at 7pm to honor the tiniest and sweetest of lives. It's a day I grieve for my friends' children, the children I will wait to meet in my next home. It's a day I never knew existed until last year when a friend sent me grief support group information when we were told our son "was not compatible with life". My son is here, their child is not. It doesn't seem fair...

I'm an outsider looking in on a courageous group of women. I see the grace and strength in these women that I can not hold a candle to...but I will hold a candle for. I will light candles for their children - for what was and what will be one day. A light shines in the hearts of all of moms and dads and grandparents and siblings, a light to cover up the hole that is missing. But one day, that hole will be made whole again...just as their child was made whole and healed in heaven.

Personally, I felt like I was dealt a trick deck of cards in life. If two moms where told their child was not to make it, how come one is still here. Believe me, I'm grateful and delighted in the fact that Matthew is here, and I wouldn't change that for the world! Yes, he has had a hard life, but he has also known love, laughter and family. I feel, for lack of better word, guilty...especially to my PUV friends. Same diagnosis - different outcome. All because of a doctor? Doubt it. All because of a depth of love? HARDLY! All because of our faith in God? Maybe...

Perhaps our path to God was different...we needed to learn different things...be tested different ways. Like how someone endures a house fire and someone else is faced with life in a wheelchair. Each trial is hard, but each will teach different things. Ask a professional athlete which s/he would rather endure...then ask a millionaire. I bet answers might be different.

God's lessons are different for each of us too. And even though I've been through the grief of "loosing" my child, I've never buried a child. And even though their hearts hurt SO much for missing milestones, they rejoice their child missed the pain of living with his/her disease.

Please, at 7pm tonight, light a candle for all of the parents of angels. I will be lighting candles for Baby Nels, Baby Matthew and Baby Vayden - all PUV babies. Such beautiful boys, such beautiful mothers. Help remember them.

housekeeping on the blog

Alright I'm going to do a little "tweaking" with my blog today, tomorrow, next month - you know...however long it takes before I throw the laptop down the stairs with a satisfying smash. :)
Please bare with me as things get a little disorganized around here. Hopefully things will be good by next week sometime. Gotta do it in spurts and the darling hubby has reserve duty in Savannah this weekend, so it will take a little longer than it would have. Wish me luck! If you see things look the same this time next week, then know I cowardly gave up. :)

Wow!

What a difference a weekend makes! Matthew now has three new potential donors. EEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEE! That was my shriek of delight incase you didn't recognize it. :) Three people to selflessly volunteer an organ for my son. Who does that?? The parents of course and yes, my mother the grandma. That's my child, that's her grandson...we would do anything! Heck, take both of my kidneys and hook ME up to a machine!
Just a brief introduction of our new saving graces and kidney heros. :) The first is my wonderful SIL, Kristen.

This is a picture of Matthew and his Aunt Kristen and cousin Leah (and cousin Kelsey...though we didn't know she was a she at the time) last August when Matthew came home for the first time. He was only home for the weekend and then back at the hospital...but still...good memories of being home. :) Kristen was helpful even before Matthew was born. Watching William on several occasions while I had to get a needle in me or a standard check up. I always thought my brother "picked good", but now I see how off I was in my rating system. He picked AWESOME! It's not every day someone offers your child a kidney, especially someone who has only been married into the family for 5 years! I think we can say hands down - Kristen wins for favorite Aunt!! :) And I can say, hands down that I can't thank her enough for volunteering.
I do not have pictures of our other two volunteers...which makes them a whole slew of special. :) Marie and Steve, my Aunt Ellen's friends, have emailed me to request donor packets. I have met Marie one time, 10 years ago at my cousin's briesmaids' luncheon. ONE time. I do not remember her husband, though I'm sure he was at the wedding too. These are two people that have never laid eyes on Matthew and they are willing to give him something they have never seen before - their kidneys. Holy crap! Seriously...that's all I can think. I always said I would be willing to donate to anyone who needed something I can spare, and of course when I die everything is up for grabs (well, everything besides my defective kidneys...). I wonder if I would actually be willing when time came. I did offer to donate for my friend's daughter when she was undergoing a liver transplant. I will offer again when this one wears out. But someone I never met...never thought about it. But seriously, I got emotional when my aunt told me. I freely admit to blubbering like an idiot. :)
So here we stand, back at three potential donors and HOPING, PRAYING it doesn't end up like our original three donors. Ian is still going to do his test and keep things moving on that front, in the event no one else is a match. But if someone is a match, we will scoop them up and send Ian to fire fighter school. And get a paycheck that might get us out of the red zone! :) Gonna need it for those immuno-suppression drugs. YIKES! We have a new plan for a new kidney with new potential donors. My heart is happy and my mind is at peace. I am moved and grateful. I am humbled and hopeful. AND - I have a plan thanks to Mama M's giveaway today: http://fivecrookedhalos.blogspot.com/2009/10/amazing-giveaway.html
I have an idea of what I'm giving the potential donor when they wake up from surgery. OK, the next morning when they are less likely to cuss me out because they want their pain meds. Just have to make some decisions. It's all about the decisions. Decisions from some awesome people that I can only say WOW about.

Five for Friday - Matthew style. :)

OK, I'm normally involved in a blog carnival that Mama M hostesses on Fridays every week, but this week I'm kind of stepping out on my own. (just for one week though and to answer ONE question - COKE!! It's all about the Coke in the south (especially in Hot-lanta were the World of Coke is located!). I am just listing 5 things I am thankful for. Yesterday, I got some bad news that kind of put a damper on my spirits. And I'm really a happy, optimistic person - yeah...not so much 24 hrs ago! :( But I've accepted the hand that has been dealt and all is well on the Karen front once again. :) So, without any more of my rambling (I ALWAYS end up doing that!) here's my friday five:

1. I am thankful that in my attempt at saving Matthew's life, he just turned around and probably saved mine. I found out I have stage 2 kidney disease only because I was tested to be his donor. I don't have blood pressure problems (hello - 105/65 here!), no protein in my urine, no excess sugar, no "warning" signs of an issue. And the fact is, most warning signs are not shown until it is too late. Kidney disease is progressive...you do not get function back. But I can now keep appointments with my nephrologists, change my diet and maintain kidney function as much as possible. Thanks for looking after your momma Matthew. :)

2. I am thankful that I have such wonderful family and friends. Family that are willing to get tested, friends that share our story with others and everyone that prayers for my son. Prayers are the most important gift you can give us anytime. We don't need money, clothes, food...we like the free things - laughter, hugs and prayers. :) We greedily take those and luckily we are surrounded by people who happily indulge us. Thank you!

3. I am thankful for Matthew. He is here and he is chewing on my couch. Not necessarily thrilled with the soured spit smell that will rise from that this evening, but he's here to be able to leave a little puddle of drool. He is crawling (something they said he wouldn't do), he is laughing (something I can't get enough of), and he is tooting (something I could do without). But he is HERE, NOW, WITH ME! Some mom's don't get that chance. I am so blessed. If I get to spend one more month or 1,000 more months...I have been made a better person because of him.

4. I am thankful for William. I often feel like William gets the short end of the stick with all the goings and comings of Matthew. But then I realize that William gets compassion, patience and will learn not to judge others based on their "label" because of Matthew. WOW! That's pretty cool! He is SO funny and super snuggly. He's our handy man helper-outer. Our go-getter introducer that says hi in the grocery store or the library. He's our car fanatic that introduced us to the special people like Mater, Doc, Sally and of course Lightening McQueen. Life would just be a bit duller without him. He colors our world. :)

5. I am thankful for my husband, Ian. Without him I would have drowned in sadness when we were told on three separate occasions to terminate our child. I would never have understood and appreciated the military wives that are left behind to be mother and father, husband and wife, lasagna maker and lawn mower. I met a GREAT group of women (and men) through him and the Coast Guard. He has stepped up and over the boundary lines set forth by society and became "house wife" for nearly 7 months when we went without a paycheck to our name and me laid up on the couch with fetal surgeries and then a c-section. He is willing to give up his current dream job and search for "brotherhood" in the fire department to begin testing for our son's kidney transplant. This October is our ten year "dating" anniversary. God bless the man that could put up with me that long. ;) I love him!

Of course there are many more, but I am keeping with the Five theme. So, more to come! Have a happy weekend all! Please still check out all the other women who followed the rules from Mama M. And sorry I stepped out...just had to get these down. :)

Broken heart, broken kidneys

It seems I am not to be the donor for my son. I called over to Emory this morning in hopes of getting my 48 hr urine test on the way. No such luck, it's been put on hold. Though a nephrologists does want to see me. I have stage two kidney disease. They did a GFR (Glomerular filtration rate) to test my kidney function by collecting 24 hrs of urine and then a blood test to test serum creatinine in my blood to contrast that with the creatinine levels in my urine. They want to see how much creatinine is being excreted, but also how much creatinine is left in my body. Normal level range in 90 - 120. Mine is 82. Not bad, mild damage to say the least, not donor material.

My heart is breaking. I want my son to feel better and here we are again at square one! Another two to three month process now for my hubby...who is still in the interview process for a new job. A physically demanding job that he will not be able to do the physical requirements of if he is having his kidney taken out in December. Started with three potential donors - now down to one. Damn my pride.

I went to a VERY bad place after receiving the news this morning. I'm fortunate in that I "bounce" back fairly quickly. This obviously is how things are meant to be in the long run. I need to be with my son during and after surgery. I know him, his medications, dosages, reactions and labs. I've been there for all of his surgeries, some by myself in the waiting room. It seems I'll be doing that again for transplant. Hubby across the street, his parents with him, my parents with William. I can handle it. I've handled it all. But seriously...DARK place this morning.

I have signed my donor card, all in honor of Matthew. I was thinking in my mind how I could "cheat" the system. Re-write my will to say that Matthew is to get my organs if I pass before him and he is currently on the waiting list or under-going dialysis treatments. Then I would over-dose. I'm NOT going to do that. I just felt like I could this morning. I just want my child to stop hurting. I DO NOT CARE IF I AM ON DIALYSIS IN TEN YEARS!!! I just want to make sure my child is here in ten years. Hell, his butt could finally drive ME up there and make it full circle. ;)

I was talking to a friend this morning about how all mother's know what it is like to see their child in pain. All mom's can empathize with that. A broken arm, diaper rash, ear infections - all are BIG deals to that mom, because that is her child. She would do anything to fix them or make the pain go away. That's what I wanted to do, but in an extreme and selfish way. I'm good I tell you! I'm just sad, not suicidal.

I will do what needs to be done next. I will continue to take my child to hemodialysis twice a week. I will administer medicines at home. I will monitor his blood pressure twice a day and chart it. I will give him bolus feeds every three hours through his g-tube. I will sit and wait to hear word from my husband's surgery and my son's surgery. I will care for both of them as they are on the mend and recover. I will not give him my kidney. I guess my heart will have to be enough for now.

Five for Friday with Mama M

Rule rundown...copy and paste the following questions to your blog, answer them, grab the MckLinky Blog Hop code and link up!! And I would be Mama Grateful if you linked back to me! BTW, if you don't have a blog of your own, but wanna join in, just leave the comments below!
Alllll righty-then! Here we go (thanks to Amanda, Sandy, and Liz for questions or inspiration! Want to contribute? Join the conversation in my BlogFrog Community!)

October 2nd Questions:

1. What is your favorite ABBA song?
I also loved Mama Mia. I saw it for my birthday with my MIL and then turned around and took my mother to it too. :) Dancing Queen is probably my favorite from ABBA, but I did love the movie version Lay all your Love on Me. :)

2. The thing you love most about fall is...
Football baby! But I also love the lower humidity. I can go sans pony tail since I don't have humidity induced "poof" in the fall. :) That's always nice. I also love the show by mother nature. I lived at the beach for about 4 years and REALLY missed it. Now I live in the mountains and can't see going anywhere else!

3. What store you would love to spend to heart's desire (money is no object)?
Can I pick two? First the grocery store - I'm having a love affair with food. ;) And then Victoria's Secret...only because if I keep eating, I'm going to keep going up in size and will eventually need some secrets to hold it all in again!

4. What is your favorite snack food?
potato chips or nachos are my favorite "official" snack foods, but I snack on salads quite a bit. I have at least two a day...just a salad kind of girl. (and no it's not a healthy salad - it's slathered in cheese, bacon bits and croutons) :)

5. What was your first car?
A sturdy but crappy Chrysler LeBaron. I called it the silver bullet...before I knew about the "adult" industry and certain names of products. ;)

Their ALL family

We have a new family member. Her name is Kathy and Ian adopted her last week. I've finally gotten in contact and have been emailing her back in forth for a few days now. She's a pretty neat person to get to know and I'm glad she is part of our "family" now. Want to "meet" her? Here is a little about her from her own email: I should be pinning on my E7 in a few months - been in the Army for 17 years - 14 active and the last 3 Reserve. Last time I was here was OIF1 and I was in Tikrit - home of Saddam. The unit I was attached to - 1/22 Infantry were actually the guys that pulled Saddam from his spider hole. I was in 5 fire fights and 1 IED explosion so I was one of the first females to get a Combat Action Badge from OIF1 - the IED is why I got out of active and went into the Reserves. It is a little different but still is great to work with Soldiers and do the job we do.
Yes, we have adopted a solider in Iraq...you should too! It has been a real pleasure getting to know her! Please say a prayer for her safety and all the men and women that are still fighting for us! Even though my husband is no longer active duty, we still look on the military as our family and think of them often.
Speaking of family, another "family" member of a different kind is experiencing a life changing event today on her 8th birthday. She is getting her kidney transplant at Egleston. Talk about a happy birthday! (Of which I need to give a shout out to my super cute niece who turns 4 today!!) I am leaving the link for this little girl's mom's blog. Please take the time to read and share and pray for her family and the donor's family this week. http://theotherjuliaroberts.itx.net/ Happy kidney-versary Quinn. I hope I am able to come visit you next Monday on the 6th floor...and I hope you don't mind my kidney baby tagging along. :)
I would like to visit on Friday, but I will be spending most of Matthew's dialysis time over at Emory! Yes, I finally got things fired up and things moving along. I got my pretty jug in the mail today and am flabbergasted at how much urine they want me to put in there. I'll include a picture of the jug late, but it's a doozie! I will be doing my blood work on Friday. We are lucky to have Kim as Matthew's nurse this week. She is SO awesome with him, that I do not mind leaving. I have scheduled my appointment around his normal nap time anyway, so he won't miss me for long. Just have to be back in time to give him his mid-day dose of BP meds and a bolus feed. The nurses aren't allowed to do such things if it is not written down by the docs. Hopefully I won't be long, or that is going to be one irritable and hungry baby!
Anyway, I must run and get both boys up. Only a 20 minute nap for Matthew...this is going to be fun! Off to his 15 month check up and shots. :( Gotta get them before transplant. I'll keep you up to date!

Friday Five with Mama M

Quick run down of the rules...copy and paste the following questions to your blog, answer them, grab the MckLinky BlogHop code and link up! I'd also be very grateful, appreciative, forever indebted, honored, etc...if you'd link back to me, Mama M.! Oh, and if you don't have a blog, but want to join in, just leave me your answers in my comments!

September 25th Questions: Thanks to Keely for inspiration and Liz...I really wanted to use a question Amanda suggested...but decided it was a little too risque!

1. What celebrity have you been told you look like?
I've gotten Reese Witherspoon - I think it was because I was pretty scrawny as a teenager and in my early 20's...bony chin and all. :) One time a hair stylist told me I looked like Julia Roberts, but I think the hair products were getting to her - don't see that at all!

2. What is your all time favorite movie, any special reason why?
As Drew Barrymore in Ever After - I could no sooner pick a favorite star. It's just that there are too many to choose from and it depends on what I want out of a movie that day...a good life, a good cry, a good scare...just depends. :)

3. Since we're talkin' movies...Popcorn: overrated, underrated, or 'bout right?
overrated at the theater - bout right for the couch. :)

4. Are you a glass half empty or half full kinda person?
I consider myself an optimistic realist. Empty is empty - can't be half of nothing! So the glass is always half full for me. :)

5. What perfume/cologne do you wear?
I don't wear perfume, I mainly pic body sprays. Gardenia and vanilla are my main scents. My sense of smell is off the charts oversensitive. I usually have to hold my breath and make a mad dash through the beginning of Macy's or Belk's at the mall. TOO much. Smells like certain perfumes, cigarette smoke and it seems all bathroom cleaners seem to spur on one of my migraines. Fun huh?!? Body sprays are a little softer, less strong and don't overwhelm my poor nose. :)

Identity

I'm a wife, daughter, mother and friend. I was a teacher, student and a child before. When people on the street ask what I do, I reply I am a domestic engineer. Not only because it sounds "cooler" than I chase kids and dogs all day and consider myself ahead of the game if I manage a shower before 2pm, but I suffered through two semesters of college physics and did earn a bachelor of science degree afterall. ;)Domestic biologist just doesn't have the same ring you know? And besides the Georgia Tech fight song told me I was "a helluva engineer" - I just happen to agree.
How do I describe my boys in public? William - spirited (it's sounds nicer than unruly and wild), car fanatic, cuddle bug, and lover of nature (ok - mainly bugs, puppies and cats, but he really loves all nature including puddles). Matthew - drooler (as evident by the constant bib changes and chin wiping I do - gotta love molars right), strong, future MLB pitcher, and a snuggle worm. No mention of crappy kidneys?? Why not? It is a part of who he is!
Yes, it has shaped him into the person he is and the person he will become, but I already mentioned that when I listed strong. Matthew is not a diseased kidney, he has a diseased kidney...well two actually, but who's counting huh? Matthew is not on hemodialysis, he goes to hemodialysis...like someone else goes for a check up. His are just more frequent. My son does not have scars, he has battle wounds from a long and courageous fight - that he is WINNING! nanny-nanny-boo-boo. (never said I was a good sport!) He's my baby, and like his older brother, will remain my baby long after he brings his first baby home!
I thought I would share a few pictures that make up Matthew. Everyone who meets him knows how smiley, friendly and super easy going he is - but these will give you a look at his personality too, from my point of view.



He LOVES his brother. He will crawl to the opposite side of the house just to be near him. Climbing up in his lap and touching him, cuddling him. Luckily his big brother is easy going too and handles it with lots of smiles and a few sighs.




He's a ham, a charmer and I believe he would have Hollywood on speed dial if I didn't loathe the industry out there. He's got big blue eyes, a big goofy grin and a bigger heart than I could ever imagine on one so young. He's on the lookout for fun and funny. Mr laughs a lot is his nickname.




He's beautiful, all parts of him...natural and medical necessity. He's curious, an explorer. Matthew views obstacles as just another road to good times ahead. He's defies logic and is an outlier of statistics. He's my son and in my eyes he is perfect. Always will be - whether his kidneys work or not. :)

Five for Friday with Mama M

Okie dokie, my friends (that's a little straight up MinneSOOOOtan for ya, dontchaknow?)...here's the rules: copy the questions below, paste them to your blog, answer them, grab the MckLinky code (link back to me, if you'd be ever so kind) and then join the fun! Honestly, you don't know what your missing if you don't participate in Five Question Friday...really.

September 18th Questions: (Thanks to Keely, Meghan, and Amanda for their help!)

1. What's your favorite line from a movie?
There are SO many for different reasons and meanings, but today I'm feeling Princess Bridey. :)
[Vizzini has just cut the rope The Dread Pirate Roberts is climbing up]
Vizzini: HE DIDN'T FALL? INCONCEIVABLE.
Inigo Montoya: You keep using that word. I do not think it means what you think it means.


2. What "group" did you belong to in high school? Goths, jocks, preps, drama, nerds?
OK,I'll be honest - I was a straight up nerd. I didn't know it, or I was just in a strong sense of denial back then. I was a good student in advance placement classes, never cut class and was on the dance/colorguard team for the marching band. (yeah - how did nerd not hit me smack in the head huh?) Anyway, I didn't discriminate on my friends and was chatty with jocks, preps and even the skater kids. I also was a universal dater. If you had the never to ask me out, I said yes. No harm in trying something once. Oh and I was a BIG flirt, kind of had an abundance of boyfriends back then. sigh - I LOVED high school!

3. If you had $1000 just for yourself what would you spend it on?
groceries, that is about as selfish as I can get. When I get money for my birthday, that is usually what I spend it on, or I get something for the boys. I always have done this. Even when I was 16, I would go buy one cd and just put the rest in the bank. This turned out to be a good thing because I had a pretty well developed nest egg - that allowed my husband and me to go 8 months without a paycheck last year. It wasn't easy, but we managed. I just save for things that are needed not wanted right now. In this economy, you just never know! When we become a two income family again, I splurge on some clothes and a haircut that is not from Great Clips. :)

4. What was your favorite childhood cartoon?
I loved the Pink Panther, Tom and Jerry and old school Disney like Mouseterpiece Theater and Donald Duck presents. :) The new Disney is fine, but it's not great!

5. What kind of sleeper are you? Back? Tummy? Side? Sprawler?
I start on my tummy and usually end up on my side. Half the time I wake up and find myself contorted to some weird position with a three year old's feet in my back.

There you have it! Join in the fun!!

Oldest picture w/ Jamie

Ok, so here's the rules for this hop:
Go to the place where you upload all your photos. If you don’t upload them online, just go to wherever you store your pics on your computer. Open the oldest album, and post the first photo. Tell the story behind it. Grab the MckLinky and post it on your blog. Just for fun, tag 3 people you want to see old photos of :)



Well, I believe this is pretty self explanatory...Disney World, bad 80's clothing, brother and sister. Yes, that is my older brother David and me (when I was skinny). This was our first trip to Disney World in 1985. We had no idea that from then on...we would be hooked. We went almost every year after that with a "beach" break thrown in after three consecutive Disney trips. I'm lucky in that I married a man that also comes from a Disney family and he shares the good memories with me. We went there for our honeymoon at Christmas time and for our "he's off the cutter and on dry land" celebration in the Coast Guard. (That trip was a bit more expensive, since 9 months later William came along - just stay at the parks if it is raining people) ;)
Here's a pic from the honeymoon and another from our land station celebration just for good measure. :)
Thanks for letting me play along Jamie!




Disney World at our Christmas time honeymoon.



lunch at Primetime Cafe in MGM.

Adrenaline

First and foremost - a shout out to my awesome hubby and family for allowing me to be selfish last night...and this morning. Getting in at 1am and not going to bed until 2am, I knew it would not be the wisest decision for me to brave the morning commute for a two hour drive going 20 mph into Atlanta again (for the 4th trip in four days). Love, hugs and kisses. Thanks for allowing me a little sanity. :)

Yesterday was exciting, in good - bad - good ways. First and foremost, I am officially recognized by Emory University Hospital to be a candidate for my son's kidney donation. YAY!!!! I got the call yesterday and completed my phone interview. No, I'm not being paid or bribed by my one year old son. Yes, I am a healthy person (oh...well except for migraines, year round allergies, a severe allergic reaction to penicillin products and a history of kidney stones) hmmmm...silence on the other line. Crap! Kidney stones? Just ONE episode 9 years ago. :) OK, we'll clear you after a detailed look at your kidneys and an in-depth urinalysis. YAY again!!!

So, here is how it is going to go. Emory's financial adviser is working with my insurance and with Matthew's to clear us from financial problems that they can find. Once that is complete, I get my jug of pee. :) This is the initial jug of pee collection - just to watch for protein in the urine, BUN, creatinine...so on and so forth to show healthy kidneys. Then once the results of that come in, I'll be mailed another jug (two actually) for a more in-depth look at electrolytes - calcium, phosphorus, parathyroid levels...all the fun things that can lead up to more kidney stones. Please let me pass this!! This is what I'm worried about! Not for another stone in the future, but something that would knock me out of the running. :( Then, once those results are back (which will take a while since it is run through a company in Chicago) I go to the two day in-patient gauntlet. This will include CT scans, renal and chest ultrasounds/xrays, stress test, EKG and open discussions with surgeons, coordinators, psychologist and chaplains. Again, if all of that goes well - we set a date! If we have absolutely NO hiccups, we could be transplanted by Halloween. :) I'm expecting November, trying to keep a little more down to earth about all of this. But I'm so excited just to move forward!!! EEEEEEEEE!

I was going to make this a two parter journal about my adrenaline rush last night at the Georgia Tech/Clemson game...but it's time to go wake up my three year old. So, I'm out of time. Just know - we won! But looked REALLY bad doing it. Props to Clemson for keeping the game alive. And props for GA Tech for not loosing sight of the W! Go Jackets. The Golden tornado is going after a Hurricane next week! :)

And in closing, just want to show what Matthew's kidneys look like now and what they will look like in a few short months. :) Just incase you were wondering...his kidneys are the ones that look like chopped liver. ;)

Five for Friday W/Mama M

In memory of the September 11th attacks and in honor of those who died, I've decided to make this version of Five Question Friday patriotic. I hope you'll join along!

Rules: Copy and past the following questions to your blog, answer them, and grab the MckLinky blog hop code! Then, link up! I'd love it if you'd link back to me, but that's not required!! If you don't have a blog, but would like to participate, feel free to leave your answers in the comments!



1. Where were you when you learned of the September 11th attacks?
I was sitting in my vertebrate zoology class when the first plane struck. When class was over, I made my way across campus to work in the education building. I reached the teacher resource center and everyone was quiet, listening to the radio and grouped around the computers with news channels up. I found out what was happening and was shocked. There had to be some mistake to explain all of this. Then we heard about the plane at the Pentagon. Everyone started getting emotional. Some of my friends and I ran across to the student center where the tvs were located. We got there just in time to watch the towers crumble one by one. We also learned of the Pennsylvania crash. Classes were cancelled just prior to noon, since the higher ups there didn't know if the CDC in Atlanta would be targeted. Even though I didn't want to watch, I couldn't tear my eyes away. I kept thinking how unreal it all was.

2. What is your favorite patriotic song?
The two that generally get me on my feet belting out my out of tune voice are God Bless American (Irving Berlin) and God Bless the USA/Proud to an American (Lee Greenwood).

3. When you hear "America", what do you first think of?
My mind goes to our flag, waving in the breeze. And wondering why the car dealerships have the biggest and most eye catching flags out there?? What's up with that?

4. What are you most proud of America or American's for?
I am proud for our fighting spirit. If I agree with it or not, we fight for ourselves, fight for the underdog and fight for our friends. Our military deserves our utmost respect and appreciation at all times. Lots of love for them here. :)
Oh - and Go Coast Guard (not that I'm biased) ;)

5. When you hear "American food" what comes to mind?
hot dogs, hamburgers, potato salad and a good ice cold Coca Cola!

Five for Friday w/ Mama M

Copy and paste the questions to your blog, answer them, grab the MckLinky Blog Hop code, link up and voila (I soooo wish I could put that cute little accent above the 'o'...or would it be the 'i'?)!! You're hoppin' along with us!

A special thanks to Sandy, Megan Silva and Keely for this week's questions!!

September 4th Questions:

1. The clothing outfit you remember from childhood and why?
It definitely wasn't my favorite outfit, but it sticks out the most. My mom stayed home with us and I got most of my clothes via my older brother except for special occasions, but the one that sticks out is the green jeans. Yes, my brother and I were both 70's babies and it shows in our horrible wardrobe. My dad would top off the outfit with a Skoal chewing tobacco cap - cause nothing shows class like Skoal! ;)

2. When you were little, what did you want to be when you grew up?
I wanted to be a vet, a nurse, a teacher, a painter and a singer...nothing was holding me back...except for how much school would cost to major in all of those. :) I settled for teaching, but will be finishing up my nursing degree over the next few years to give that a go again.

3. What is your must have for Fall?
I love the first day it is cold enough to put on a sweater. I don't know, must be the 80's Cosby kid admirer in me, but I love sweaters! A real must have though is anything Georgia Tech - gotta show my support! Go Yellow Jackets!! :) Game day tomorrow - woohoo!!!

4. If money were no object, how many kiddos would you really have?
If money were no object (and birth defects weren't a reality) I would have been happy with three. I would have looked into adoption. My husband keeps mentioning that too. Gotta get Matthew squared away first though. We'll see what God throws at us. :)

5. The best part of your birthing story (other than the beautiful child at the end).
The epidural ;) (and yes Mama M Group B right with ya!)

Wordless Wednesday

I don't know who originally came up with the idea, but I am borrowing the idea from the lovely Susie from Writer's Block. http://writersblock-susie.blogspot.com/2009/08/wordless-wednesday_19.html She's pretty cool. :)

No words needed - just a smile. :)

a day in the life

It's been a long time coming, but I'm finally getting to it. A day in the life of Matthew, photo journal style. Now some changes have been made since I took these pics a month ago - like no longer on procrit/epogen, he is on Aranesp that he gets once a week at diaylsis.) These include diaylsis and the common what we do when the g-tube has been pulled out too. If you have any questions about these pictures, please do not hesitate to ask. Whether you have a kidney baby, or know a kidney adult it would be a wonderful opportunity to share tricks of the trade. I will do this for my kidney donation steps too. Beware - you will see a jug of pee in the future (just not me actually peeing into it...I do have some privacy issues!). Also, you will never see pics of any of my children in situations that I am needed to hold their hand and soothe them. So no pictures of getting the actual shot of procrit, no pictures of the g-tube being pulled out or me shoving in a new replacement, and no pictures of bandage change. Trust me, those times are deeply burned into my memory and I have NO need for Matthew to ever see them anyway. I hope you learn a little something about kidney function and what life is like without. If nothing else, I hope you see what a remarkable son I have and all the trials he faces - with such sweet smiles and giggles. :) On to the show:

Daily Medicines




The meds on the counter basically help to control electolyte imbalances that your kidneys do naturally: sodium, iron, calcium, parathryoid levels, potassium and phosphorus. He has one or two meds for each of those electrolytes. The meds in the frig are for high blood pressure, kidneys also control that function in your body too. The jug next to the meds is his formula. We make a new 32 oz batch every night at 10pm; we add kayexlate and shake. The kayexlate binds the potassium and settles to the bottom. In the morning we pour off the formula, leaving the brown sludge you see pictured. Too much potassium can cause someone to go into cardiac failure. Matthew hoards pottasium! He's not allowed any. I have noticed muscle cramps and spasms because of this - we now had baby applesauce through his g-tube four days a week, both days of the weekend since he gets dialysis on Friday and Monday and then Tuesday and Thursday too. This keep his potassium level right around 4.7 - 5.1, perfect!

Here's what his formula is comprised of (I didn't take a pic of the kayexlate, but you saw the "final" product anwyay. :)


Here are the "special meds" he doesn't get these every day. Which is good - we have enough problems with the heparin he gets...stupid bloody noses!! And like I said before, no more procrit...we have "moved up" to stronger meds - Aranesp (a protein made from human plasma).



OK, so how do we get these meds into him you ask - his g-tube of course. LOVE the g-tube. No more iron stains, no more half doses due to spit up, and no more forcing a tiny baby down and making him swallow these VILE things! So, here's the package and the tube itself. You can see the two ports; the med port with the small medicine syringe and the feed port where I do his bolus and night time feeds. Also attaching what the temporary "replacment" looks like for after he pulls out his own g-tube - not that he EVER does that right...umph!





I think I've got a lot of pics up right now, so I'm going to just move on to dialysis...but know there are a LOT more. I have tegaderms (breathable bandages), swabs and catheters for cultures of urine, the feed pump (which I belive you can see him hooked up to that on his caringbride site, the 2nd page of pics...I really need to update those...) Also his therapy, but I don't have Crystal's permission to put her pic up here, I'll ask her next week if she would mind. :)

So why don't you travel 64 miles with me from our door to Egleston's door. We are across the street from Emory University Hospital smack in between the city of Decatur and Atlanta, though it is given an Atlanta address. We head down four stories into the parking deck, parking on the very bottom level so we don't have to fight for a spot or be followed by parking vultures (which just makes me go slower people!). Up into the elevator to another elevator further in the heart of the hospital. The butterfly elevators. :) Now up 6 floors to the transplant wing and greet our family. I will not be publishing pics that I have taken with nurses/dieticians/child life workers, because again I only had their permission for his transplant journey book that I am making - not my blog. These pictures were taken on his first birthday, thus why I have my camera at dialysis in the first place. :) Oh and the one pic of his hospital crib, if you look closely you can see his little arm hanging out...he was napping. :)






Again, these nowhere near show you the amount of crap he puts up with every day. It's a small glimpse into a BIG life he is going to live. And because of all the crap he puts up with daily - he IS going to live! I'm so proud of my little fighter. Matthew is my hero. :)