The Gardner Groove.....

Best Christmas Gift, EVER!!

2011-12-21T07:54:00.003-05:00

Moms of typical children may wait 18 months or so. Moms of children with special needs may wait a lifetime. With Nathaniel, I waited just over four years but it was so worth it! When I opened his bedroom door this morning to get him ready for school he said the one word I've longed to hear, "MOMMY!" Best Christmas present ever! And now I can't stop crying. :)

Don't get me wrong. He has said the word before, when prompted. But he has never looked at me and said my name. He has said Daddy to Brent and Ty and Em's names. But not Mommy. I was so surprised when he said it that I just stood there for a second. Sure love that little boy!!

Brent & Fundraisers

2011-09-21T09:13:00.003-05:00

Many of you follow Brent's caringbridge website and know that his health is very poor at this time. For those of you who don't know how things are going, here's the site information.

http://www.caringbridge.org/visit/brentgardner/

In an effort to help our family, several of our amazing friends have begun fundraisers on behalf of our family. Our friend Sue has put together a blog to keep everyone updated on the fundraisers.

http://help4thegardners.blogspot.com/

Bag, Anyone?

2011-09-13T21:16:00.002-05:00

Tyler is starting to realize that not everyone has a colostomy bag. Recently he lifted my shirt up and said, "momma, where's your bag?" Brent, Em and I all had to pull our shirts up and show him our bellies so he could see that we don't have bags. I think that confused him more since Nate does have a bag.

Ty is somewhat obsessed with his bag. It is a constant battle with him -- pulling the bag off, hitting the bag, lifting his shirt to get to the bag, going down his shirt to get to the bag, etc. We are constantly telling him, "Ty, don't touch your bag....don't take your bag off!"

Apparently he didn't realize that our dog, Max, doesn't have a bag. This morning things were a little bit crazy in our house. Em was sick which threw off my whole groove. I was running around trying to get everyone ready, out the door and on their buses on time. Poor Max was crying and needed to go potty. I was changing Tyler's diaper and I was ignoring Max and hoping he would be able to hold it for just a couple more minutes. He couldn't. He gave me a sheepish look and started to poop on the floor. I immediately yelled at him, "MAX, DON'T POOP!" Tyler, seeing the poop, yelled, "MAX! Don't take your bag off!"

So glad he understands the rules. Now if we could just get him to follow them.....

Metal Head

2011-09-12T20:40:00.003-05:00

Nate likes to head butt. Hard. And it hurts. I try especially hard to not be on the receiving end. We all avoid it, if possible.

Poor Em got it good the other day. I heard it hit and it hit hard. Poor little bunny. When the crying had finally ceased she said to me, "Mom, why is Nate's head made of metal?" It was all I could do to not laugh, out loud, really loudly. I failed. She was not appreciative. So I did my best to explain that his skull is made of bone, just like the rest of ours. I'm not so sure she was convinced.

Fast forward to tonight. Em had me laying on her floor and she was giving me a back massage, aka hitting me really hard karate-chop style. **Funny side note....as she was beating me up -- I mean, massaging my back -- she says, in all seriousness, "isn't this just like being at a salon?" Of course it was. Only, not really.**

So, during the midst of my "salon massage" we could hear Natey jumping on his bed, yelling and just generally being wild. And I say to Em, "where does that kid get his energy?" And she replies, "who knows. What I wonder is where he gets his metal head from." This got me giggling for sure but her next comment had me laughing so hard I couldn't talk. She says, "you know mom, maybe black people's heads are just stronger."

Oh Em, where do you come up with this stuff?

Happy Fourth Birthday, Nate!

2011-09-01T08:33:00.002-05:00

Four years ago today our sweet little Nate came into this world. He came much too soon. He was born 15 weeks early and weighed a whopping 17 ounces. His prognosis was poor. He faced an incredibly difficult uphill battle. The doctors weren't certain he would survive. All of the odds were stacked against him.

And yet, his birth mom, with the greatest love and courage, made an adoption plan for him. She knew that if he did make it through, he would need a family. She contacted Adoption STAR and put the fate of her too small baby boy in their hands. Her love and sacrifice amaze me to this day.

Four years ago Brent and I were considering adopting again. It is something we had talked about quite a bit. But, though our hearts were ready, our finances weren't. We had decided that we would wait until 2008, until the money was there, until we were a bit more ready.

Of course, as we have learned time and time and time again, these things aren't exactly up to us. When we got the call about Nathaniel, just as with Tyler and Emmalee, I knew. I knew this sweet baby boy was meant to be in our family. I wasn't sure how we would make it happen but I had faith that if this was the plan for our family, it would work out.

Brent and I worried so much about Nathaniel's prognosis. At times the doctors were hopeful and encouraging. At times they were convinced he wouldn't survive. We were unable to go and visit him because our paperwork wasn't quite done and we were waiting on things like background checks and fingerprint clearances; things that were beyond our control.

Through it all Nate fought. He beat the odds, amazed the doctors and came through. He had setbacks and created fear and then beat the odds again. No doubt about it, that little boy is a fighter!! After all, he is a Gardner!

Through it all we fought. We had yard sales and online fundraisers. We had raffles and, I'll admit, we outright asked for money. We had faith that it would work out. We KNEW this child was meant to be ours and we put our faith in Heavenly Father, knowing that He would help us get things in order.

And He did. Looking back I am still overwhelmed by the love and generosity of our family, friends and even strangers. It still brings tears to my eyes.

Many people ask why Nathaniel's middle name is Roger. He is named after a very special man who helped to make sure that Nate made it home to our family. His financial contribution, along with a matching contribution from his company, was the final $1000 we needed to get Nate home. It was literally an answer to prayers. We decided to name our baby Nathaniel Roger so that we would always be reminded of his love and generosity. It is also a reminder that prayers are heard and that things do work out the way they are meant to.

Today our too small, very ill baby boy is four years old. As I write this I am overwhelmed with emotion. The past four years have been a roller coaster ride for our family. We have faced challenges we never could have predicted. And yet, just as Nate has always done, we have fought. We are strong and determined and faithful. After all, we are Gardner's!

Nathaniel amazes me every single day. His name means "Gift from God" and he certainly is!

Happy Birthday, Natey. We love you!!!

Seven Years

2011-08-11T06:25:00.003-05:00

Seven years ago today I became a Momma. I held my sweet baby boy for the very first time and marveled that God had seen fit to allow me to parent this perfect angel.

As we were preparing to come to NY to adopt Tyler I remember practicing over and over the first words I would say to him when I held him. "Hi, I'm your Momma." And I can clearly remember holding him close and whispering those words to him. It was something that I had longed to say to my child for many, many years. It was something I wasn't sure I would ever get to say.

I'm not sure I felt like a mom right away. I think when you adopt, the feelings come in waves. For the first couple of weeks I remember feeling like at any moment someone would come and take him back and say okay, your time is up.

I clearly remember one particular day when I realized that this was my child, forever, and no one was coming to take him. I was rocking him and it was quiet in the house and I just had this overwhelming wave of emotion. I clearly heard the spirit tell me, "this is your child. This is the child that God intended for you to have." I sat and held my baby and cried for a long time that day. I cried tears of joy, tears of humility and tears that helped me let go of the emotion of waiting for that day to come.

Tyler has changed our lives in ways I could never have predicted. I am in constant awe of his strength, his spirit, his love for others. He amazes me every single day.

Many, many people are part of Tyler's story including his incredible birth family and his self-less first adoptive parents and many others. I think of them every day and say a prayer of gratitude that because of them, I am Tyler's Momma.

Tyler, we love you so very much! I am so thankful that on that beautiful day, seven years ago, I was able to whisper to you, "Hi, I'm your Momma."

It's A Hard Job!

2011-07-06T21:25:00.001-05:00

Dear Emmalee,

It is not my job to be your best friend. It is my job to be the mom. I know that doesn't always make you happy. Just remember that I do it because I love you! Hopefully one day when you are the mom, you will appreciate it.

Love,

Mom

Nathaniel

2011-06-18T11:22:00.003-05:00

Nathaniel had colostomy surgery done on Monday, June 13. Feel free to follow along with his recovery by going to his Caringbridge site,

http://www.caringbridge.org/visit/nathanielgardner

You can eat off my floor......

2011-05-15T23:55:00.006-05:00

......there are crumbs everywhere!

This is, perhaps, the perfect title for my blog. Or maybe it should be something like, "Send in the Clowns," complete with circus music playing when people log in. Most days this is how I feel.

I had to take a bloggy break. I haven't really posted lately and I really haven't kept up on reading any of my favorite blogs. It wasn't necessarily a conscious decision but I have to say, it has been a much needed break.

It's funny....the "famous" blogs that I frequent are written by amazing women whose goal and desire is to help their readers feel good about themselves. For me, however, the opposite has happened. Instead of feeling better about myself as a mom/wife/friend/person, I began looking at myself and only seeing all the things I am not doing. I began comparing myself to these incredible women and feeling completely inadequate. After all, I don't sew, craft, sing, create fantastic art work, keep my house spotless or cook gourmet meals. I am not always patient. Sometimes I yell. Sometimes I want to lock myself in the bathroom and cry. (Okay, who am I kidding? Sometimes I DO lock myself in the bathroom.) I'm not a perfect mother or wife. I have low self esteem. I don't always shower. Sometimes I don't comb my hair. I don't quilt. I won't buy my kids Play-Doh because I hate the mess it makes. I'm not particularly good at anything specific. In other words, I'm nowhere near as amazing as these other moms. They do awesome things with and for their families. They bake, they sew, they grow their own food, they leap tall buildings in a single bound. They cook full course meals. They host fantastic parties. They go on fun family outings. They take hundreds of pictures so that they don't lose any memories. They enjoy every single second of parenthood. How do I know? Because despite how incredibly busy they must be, they are kind enough to blog about all of these things.

Don't get me wrong.....I'm not criticizing these amazing women. I love them. I have spent days/weeks/months/years attempting to be more like them. Wishing my life was more like theirs. And instead of realizing how amazing my own life is in its unique way, I eventually began comparing myself to them and only seeing my shortcomings. This led to my unplanned but very much needed bloggy break.

And then it hit me. DUH! I am not these women! My family life is nothing like theirs. My children are not like their children. I am me! My world is not their world and that's okay. Not only is it okay, it is amazing! I reminded myself that this is the life we chose. We chose to parent kids with special needs. We chose to take on these extra challenges, believing we were capable of doing it. And I have to say, for the most part I feel like we do a pretty good job.

So..........

Did I bake bread today? Nope. Instead I changed a colostomy bag. I cheered because even though he is almost four years old, Nate said "momma" more clearly than he ever has. I got a bit frustrated that even though he's nearly seven, Tyler still likes to throw his food on the floor when he's finished instead of just pushing his plate aside. I laughed so hard that I cried when Tyler tried to wink at me.

Did I sew a quilt today? Nope. Instead I watched a home video of Tyler as he was going through chemo and said a silent prayer of thanks that that chapter of our lives is over. I did some research on Autism and attempted to learn how to better help Nathaniel. I listened to Emmalee read a story to her brothers and marveled at how amazing she is with them. I sat through Nate's CPSE meeting and explained why he needs to be in a full day program next year so that he gets enough therapy in his day.

Did I host a fabulous party? Nope. Instead I prayed no one came over unannounced because my house was pretty messy and I hadn't taken a shower. I did some research on colostomy surgery since Nate is scheduled for that in June. I worried about how I am going to coordinate help and childcare for when that happens and we are faced with yet another hospital stay.

Did I cook a gourmet meal? Nope. Instead Brent and I researched Behcet's disease in an attempt to understand more about his illness and it's symptoms. I emailed a new mom whose son was unexpectedly born with Down syndrome. I took great pride in my sweet little Emmalee as she set the table for our very simple dinner.

Did we have a perfect family outing? I suppose. Perfect for us, anyway. Our perfect family outings generally consist of taking a drive in the van and going through an automatic car wash. The kids love it and Tyler is always sad when it's done. We don't do restaurants because the noise and stress are too much for the boys so we got take-out instead. And then we had to cut it short because Tyler pulled his colostomy bag off and Nate had a meltdown. That's pretty much par for the course on our family outings. (I can't even imagine trying to take a major trip somewhere. Maybe someday!)

Is our life perfect? Nope. But in a way I think it is perfectly un-perfect. Our life is unique. After all, our family is unique.

Am I a perfect mom/wife/friend? Not even close. But I am me. And I am slowly but surely beginning to realize that I don't have to be anyone else. I don't have to impress anyone. All I have to do is be the best me I can be.

So this is my life. Is it glamorous? Nope. Is it sometimes crazy? Absolutely! Would I change it? Not for anything in the world!!

Emma-Isms

2011-04-24T21:01:00.002-05:00

Our sweet Emmalee turned six on April 6. I still can't believe she is six years old already. Where does the time go?

Em is very funny! She has been cracking us up lately. Here are a few of the latest.

Brent was putting her to bed a few nights ago and he told her he couldn't stand being in her room because it was so messy. She just looked at him and said, "Oh yea, well you're complicated!"

One morning she was complaining to Brent that her tooth hurt. I asked him what she said and he told me, "Em has a toothache." She said, "I don't have a toothache, my tooth just hurts!"

I told Em to get in the shower. I was in my room which is near her bathroom. She came into my room and said, "Mom, I'd be delighted if we could communicate while I'm in the shower."

We love you, sweet Emmalee!!

Pure Heaven

2011-01-05T01:39:00.001-05:00

Best part of my day? Tyler said, "I want snuggle mom, pwease!" Complete with hugging himself when he said snuggle and signing please. There is no way to resist a request like that!! He pushed me down on the couch saying, "lay down," climbed up on me and fell asleep. Pure heaven, I tell you!

Potpourri

2011-01-02T14:12:00.003-05:00

Wow, I can hardly believe that Christmas has come and gone and we are already two days into the new year. 2010 seems to have gone by really quickly. I'm glad. It wasn't the easiest year for our family. Not the most difficult either but none the less, I am glad to see it go.

We have enjoyed having the kids home for Christmas break. We are also looking forward to them heading back to school tomorrow. I think Ty is most excited. He has asked for his teacher and aide every single day since break started. He loves those ladies and everyone else in his class. What a blessing!

Emmalee has been cracking us up, as usual. Here are a few new Emma-Isms --

Em came home and told me that she told her teacher that our family speaks Spanish. I was surprised by this since we don't. At all. I told her that we don't in fact speak Spanish and she said, "of course we do. You know, uno, dos, tres....." Love it!

Em has been singing a lot lately. The funny part is that she doesn't really know the words. Some of our favorite renditions are "Fa-lees La De Dah, Fa-lees La De Dah, Fa-lees La De Dah oh blah, blah, blah." "You get your head up over...." (This is her version of the Hannah Montana theme song.) She's a hoot.

Natey is doing pretty well for the most part. I think Brent and I have resigned ourselves to the fact that he is going to have to have a colostomy. This was not an easy decision for us. But watching him struggle with the constant constipation is agonizing. We are going to make another appointment with the surgeon and see what our options are.

Brent is still struggling a great deal. He is trying a new medication given by IV infusion. We are praying it will help to relieve his symptoms. So far there has been no change but we've been told that it could take several doses.

Our Christmas was good. Very low key. It was a nice day and we sure enjoyed being together as a family.

We have a new family member. Max is a four month old yorkie poo who weighs in at a whopping five pounds. He is nothing but fluff and love. He is a super good puppy who LOVES the kids! It took us several months and lots of talking with doctors and such to find a dog that Emmalee wouldn't be allergic to. So far she has done great with Max and we are praying he will be a permanent member of our family. He is a love!!

The new year brings about thoughts of resolutions. I hate making them because I usually fail and I really don't like that. There is something I've wanted to do for a long time, though, and my brother in law Kyle and I sort of challenged each other to do it. I am keeping a photo a day blog for the year and hoping I can keep up on it. The new blog address is http://jodiedailyphoto.blogspot.com I think it will be a lot of fun!

Here's hoping the new year brings peace, joy and good health!

National Adoption Month

2010-11-30T19:17:00.003-05:00

Here we are at the 30th of November. I'm not exactly sure where this month went. It seems like it was just 31 for 21 in October and now we're at the end of November. Thanksgiving is over. Christmas is upon us. The year is nearly done.

It occurred to me that I had failed to post anything in regards to National Adoption Month. I feel like a total slacker!

November is indeed National Adoption Month. I LOVE that there is an entire month dedicated to adoption. We talk about adoption often in our home. National Adoption Month is just another way to focus on the topic.

For those of you who may not know, all three of our incredible children came to our family through the miracle of adoption. Tyler was ten weeks old when we adopted him on August 11, 2004. Emmalee came to us just eight months later when she was exactly two weeks old. Her adoption day is April 20, 2005. Nathaniel was born on September 1, 2007. He was 15 weeks early and spent almost four months in the NICU. His adoption day is December 21, 2007 and he came home from the hospital on December 29.

Each of our children's adoption stories is unique; as unique as each child. Each of them came to us when they were meant to. Each of them came to us HOW they were meant to. I have no doubt that these children were meant to be ours. And I have no doubt that adoption was always the plan for our family.

Of course, that is easy to say now that I am blessed with these little ones. I wasn't always so sure. I wasn't always so confident that adoption was our plan. There were many, many tears shed, many prayers uttered, many days of worry and fear. There were also years of doctor's visits and fertility treatments. Years of self pity and doubt.

I will tell you that once we made the adoption decision, everything fell into place. It was as if Heavenly Father breathed a sigh of relief that we had finally figured it out. Things happened quickly once our final decision was made. We completed our initial home study in April 2004 and Tyler was home in August. One year from the initial home study we brought Emmalee home. And just three and a half years after that first home study we were blessed with Nathaniel. Yes, once we accepted and understood the plan for our family, we were blessed.

There isn't a day that I don't think about and pray for each of our children's birth parents. It is because of them, their love and their sacrifices that we are a family. We will be forever in their debt.

Tyler was also blessed with "first parents." Not only does he have incredible birth parents, he has amazing first parents. We love his first parents as well.

Did I ever expect when Brent and I got married that we would build our family thorough adoption? In a word, no. It honestly never occurred to me that we wouldn't be able to have biological children. It just wasn't something I had thought of. But WOW! I simply can not imagine our lives without THESE children. I know, without a doubt, that these children were meant to be in our family. And I also know that the only way they were able to come to us is through adoption.

Our children are the greatest blessings in our lives. They have made us a family. They have brought us closer together as a couple. I thank my Father in Heaven every single day for these beautiful children!!

Eye Color and Love

2010-11-22T02:24:00.004-05:00

Dear Emmalee,

I adore you! You are one of the sweetest little people I know.

Sometimes I wonder if you will ever sleep through the night in your own bed. You are almost six, you know.

Okay, the truth is that I secretly like that you come snuggle with us. We could set a clock by you. It is almost always 1:00 a.m when you come in. Sometimes you are a bit cranky and get a little irritated if I don't move over right away. Sometimes I wake up in the morning and don't even remember you coming in. And sometimes, like two nights ago, the best thing in the whole world happens.

As usual, you came in right around 1:00. You snuggled right into me and I was still kind of awake so I said hello to you and then you and I had the best conversation. You were so smiley and had the sweetest little whispery voice. You told me how much you love me, (all the way to the moon, all the countries, all the states, all of China, all the way back to the bottom of the deep blue sea, all of New York and all around the world.) And then you asked me how much I love you. (All around the world forever, all the way through the entire universe and all the way back to the bottom of the deep blue sea.) You told me how much you love daddy and Tyler and Nate. You told me that you're glad I'm your momma. It was perfect. It made me so very happy! I told you that you and I and daddy have the same color eyes. And guess what you said? You told me "that's how we know we were meant to be together forever!" You know what, sweet girl? You're right. We were meant to be together forever. No doubt about it. You were meant to be our girl and we were meant to be your momma and daddy. What an incredible gift it is to be a forever family!

I know that someday, all too soon, I will wake up and you won't be snuggled in bed with us. I'll stay awake until 1:00 in the morning and you won't come in. You'll be too big. And when that day comes, I will be sad. I may even cry a little. But no matter what, I will always have the memory of one perfect night, snuggled tight with my baby girl, whispering about how much we love each other. Thank you for giving me that amazing gift, Emmalee. I am so blessed to be your momma!

Love,

Momma

I Am The Child

2010-11-01T21:19:00.001-05:00

I found this on another blog and cried as I read it. Grab some tissues!

I AM THE CHILD

I am the child who cannot talk. You often pity me, I see it in your eyes. You wonder how much I am aware of -- I see that as well. I am aware of much -- whether you are happy or sad or fearful, patient or impatient, full of love and desire, or if you are just doing your duty by me. I marvel at your frustration, knowing mine to be far greater, for I cannot express myself or my needs as you do.

You cannot conceive my isolation, so complete it is at times. I do not gift you with clever conversation, cute remarks to be laughed over and repeated. I do not give you answers to your everyday questions, responses over my well-being, sharing my needs, or comments about the world about me. I do not give you rewards as defined by the world's standards -- great strides in development that you can credit yourself; I do not give you understanding as you know it.

What I give you is so much more valuable -- I give you instead opportunities. Opportunities to discover the depth of your character, not mine; the depth of your love, your commitment, your patience, your abilities; the opportunity to explore your spirit more deeply than you imagined possible. I drive you further than you would ever go on your own, working harder, seeking answers to your many questions with no answers. I am the child who cannot talk.

I am the child who cannot walk. The world seems to pass me by. You see the longing in my eyes to get out of this chair, to run and play like other children. There is much you take for granted. I want the toys on the shelf, I need to go to the bathroom, oh I've dropped my fork again. I am dependant on you in these ways. My gift to you is to make you more aware of your great fortune, your healthy back and legs, your ability to do for yourself. Sometimes people appear not to notice me; I always notice them. I feel not so much envy as desire, desire to stand upright, to put one foot in front of the other, to be independent. I give you awareness. I am the child who cannot walk.

I am the child who is mentally impaired. I don't learn easily, if you judge me by the world's measuring stick, what I do know is infinite joy in simple things. I am not burdened as you are with the strifes and conflicts of a more complicated life. My gift to you is to grant you the freedom to enjoy things as a child, to teach you how much your arms around me mean, to give you love. I give you the gift of simplicity. I am the child who is mentally impaired.

I am the disabled child. I am your teacher. If you allow me, I will teach you what is really important in life. I will give you and teach you unconditional love. I gift you with my innocent trust, my dependency upon you. I teach you about how precious this life is and about not taking things for granted. I teach you about forgetting your own needs and desires and dreams. I teach you giving. Most of all I teach you hope and faith. I am the disabled child.

Author Unknown

31 for 21, Day 31!!!!

2010-10-31T20:33:00.003-05:00

Wow, I can't believe that this is the last post for 31 for 21. I certainly wasn't perfect at this and didn't post every day as I had hoped to. But I am really thankful that I participated. Mostly I am thankful for all the other blogs I have found. I have read many uplifting stories this month. I have also seen some amazingly adorable children from around the world!

My ultimate goal for participating this month was to help people realize that those with Down syndrome are more alike than different. They love, they laugh, they hurt, they cry, they learn, they teach, they have friends, they go to school, they work, they often get married. In other words, they are just like everyone else. Tyler is just like everyone else. Yes he has his struggles. But who doesn't? Everyone has special needs in one way or another. His just happen to be more noticeable.

Not a day goes by that I don't feel humbled by the fact that God chose me to be Tyler's mom. There are many times that I feel unworthy of such an incredible blessing. I am overwhelmed with love for this amazing child. Being his mom is more than I ever could have hoped for in life. He makes me want to be the best person I can be. He makes me want to work harder, to be kinder, to enjoy the little things in life. He helps me remember to smile more, to laugh more, to sing and dance more. He can make me smile in an instant, no matter how blue I may be feeling. His love and compassion for others never ceases to amaze me. His spirit shines through in all that he does. I am simply in awe of this sweet, sweet boy!

31 for 21, Day 29

2010-10-29T19:14:00.003-05:00

Emmalee and Tyler were playing today and Ty was really enjoying it. They were getting along so well. Emmalee looked and Brent and I and said, "we're best friends; I just know it." I looked at Brent and we both had tears in our eyes. I am truly thankful that our children love each other so much and that they really are best friends.

31 for 21, Day 27

2010-10-27T20:28:00.000-05:00

31 for 21, Day 26

2010-10-26T19:46:00.000-05:00

31 for 21, Day 25

2010-10-25T21:06:00.003-05:00

Tyler had surgery on his left eye today. They replaced the lens in his eye with a synthetic lens. He did great, as usual. (He had the right eye done a few weeks ago.)

Here are some fun pictures of him before surgery. Enjoy!

31 for 21, Day 24

2010-10-24T20:31:00.002-05:00

Sorry for the lack of posts the last few days. Our laptop decided to get a virus. I think, (fingers crossed) that we got it taken care of. Whew! I was able to check email and Facebook on my phone but trying to post to the blog from there was just not working for me.

31 for 21, Day 21

2010-10-21T15:40:00.001-05:00

Okay, this post is for all of you out there who have happened upon our little blog. I have seen folks from all over the world in my status feed. So, I am challenging you, dear readers, to put a quick comment and tell me where you're from, how you found the blog and anything else you might like to share. Thanks in advance!!

31 for 21, Day 20

2010-10-20T20:00:00.001-05:00

31 for 21, Day 19

2010-10-19T18:12:00.003-05:00

Every so often I'll run into pictures or videos of the kids and instantly I am transported to that moment in time. It's incredible how much our children have grown and changed. The days go by so quickly and the kids seem to be changing before my eyes.

I found this video just now and it instantly brought tears to my eyes. This was taken April 21, 2008. Tyler was just about eight weeks into his leukemia treatment. He had lost his hair and the steroids had puffed him up so much that he was almost unrecognizable. He was miserable during those weeks. There were days he wouldn't move off the bed. He wouldn't eat. It was torture to watch him and know there was nothing we could do to help him.

Tyler would barely interact with people when they would come in the room. That is, except for one person, his music therapist. As soon as she would come into the room, he would sit up and smile. He would sign "music" and wait for her to start getting out the instruments. He would interact and be happy and for the thirty minutes that she was there each day, he was himself. To us, she was a miracle worker.

I will be forever thankful to everyone who took care of Tyler during his cancer journey. We simply could not have made it through without all of them.

31 for 21, Day 18

2010-10-18T12:08:00.002-05:00

Click HERE to read one of the most incredible birth stories ever. Grab some tissues first. When you're done with the birth story, peruse Kelle's blog. She is an incredible writer, an awesome photographer and has two of the most beautiful children ever. Her youngest, Nella, happens to have designer genes.

31 for 21, Day 17

2010-10-17T20:38:00.001-05:00

31 for 21, Day 16

2010-10-16T13:37:00.002-05:00

Update on Nate's Appointment

Well, we met with the gastroenerologist and the surgical team on Wednesday. The good news is that Nate does not have Hirschsprung's disease. The bad news is that Nate does not have Hirschsprung's disease. Why is that bad news? Because it means there isn't a definitive answer as to what is going on.

Dr. Rossi from GI is at a loss. Based on all the tests we have done, there just isn't an answer from a GI standpoint. He said there is one more test we can do but we'd have to go to Boston for it and in his opinion it probably won't show us anything different.

Dr. Pegoli is the surgeon. He believes that Nate's constipation issues are neurological. He thinks that there was probably neurological damage due to Nate's extreme prematurity and intracranial hemorrhages after birth. It is obvious by Nate's extreme developmental delays that there are neurological problems. We had no idea that they could also cause issues with his colon and bowel system. It makes perfect sense but it just wasn't something we had thought about.

So what does this mean? Dr. Pegoli says we have two options at this point. The first option is to continue doing what we're doing and see if eventually Nate will be able to have a bowel movement on his own. The problem with that is not knowing if or when it will happen or how long it may take.

The second option is a colostomy. This would give Nate relief now and may allow his colon and bowel system time to recover. The colostomy would not necessarily be permanent and, as Dr. Pegoli stated, "it wouldn't burn any bridges." In other words, we could eventually reverse it and start over to see if Nate could go on his own.

At this point we are simply not sure what to do. We are going to try giving him large amounts of Miralax again to see if this will make any difference. It hasn't really helped in the past but Dr. Rossi says it is worth a try.

I was really prepared for them to tell me that Nate has Hirschsprung's. If he did, the colostomy would be absolutely necessary and not just optional. The thought of having to put him through a major surgery is daunting.

Right now we are going to pray about it and try to make the best decision for Nate. Please continue to pray for him and pray also that we will make the right choice.

31 for 21, Day 14

2010-10-14T14:54:00.003-05:00

Some of Tyler's Favorite Things

Apples
Goldfish Crackers
Eating! He will eat pretty much anything.
MUSIC!! Right now we are listening to Train and he LOVES them!
Barney
The Doodlebops. It was a sad day when Disney stopped running their show! Thank goodness for DVD's.
Riding the bus
School
Making people laugh
Playing outside
Swinging
Dancing
Singing
The Hokey Pokey
Vacuuming
Sweeping
Taking off his shoes. As soon as he gets home from school he gets his shoes taken off and always says, "Oh, that's better!"
Starburst
Throwing things down the stairs
Turning the TV up way too loud and then yelling "TOO LOUD!"
Pushing the button to open/close the garage door
Learning a new word, sentence or sign and then repeating it a million times
Blowing raspberries on someone's arm or neck
Playing 'Rock the Baby' with me. He will say that and then lay in my arms like a baby while I rock him. Then he laughs and says, "again!"
Playing with Emmalee & Nate
Dancing while daddy plays the piano
Drumming on anything and everything
Corners on fabric. He always finds the corner of blankets when he is tired. My friend Camberly made him a gorgeous quilt for his birthday with a corner border all the way around.
Firetrucks, ambulances and police cars
Saying "HI!" to everyone
Books

31 for 21, Day 13

2010-10-13T07:40:00.003-05:00

Today is a big day for Nathaniel. I know many of you have kept up with our posts regarding his possible diagnosis of Hirschsprung's disease. (You can read them here and here.)

This has been a very long, very frustrating process. In a nutshell, Nate doesn't poop. Not on his own anyway. I'll spare you the specifics but suffice it to say, it takes a great deal of help for him to be able to have a bowel movement. He has had several tests done....barium enema, rectal biopsies, rectal pressure test, etc. The gastroenterologist has been back and forth about whether or not it is Hirschsprung's disease. I think he's been hesitant to make the final diagnoses because of what that will mean for Nathaniel.

After the last test, (rectal pressure,) the doctor has decided that it is time to consult the surgery team. We are meeting with our favorite surgeon today, along with the GI team.

I am nervous but hopeful. Hopeful that we will get a diagnosis. Hopeful that we will get a plan. Hopeful that it will be something that will most benefit Nate.

Please keep us in your prayers.....I'll update later today.

31 for 21, Day 12

2010-10-12T22:07:00.001-05:00

Click here for another great story!

31 for 21, Day 11

2010-10-11T16:05:00.003-05:00

I LOVE this story!!

Player with Down syndrome Scores Touchdown

by JAKE WHITTENBERG / KING 5 News kgw.com

Posted on September 30, 2010 at 11:11 AM

SNOHOMISH, Wash. - By most accounts, Ike Ditzenberger is different.

The 17-year-old junior at Snohomish High School has Down Syndrome. He takes special classes during the day, but after school Ike is just like one of the guys.

He’s a varsity football player.

“He gives it 100 percent every time he’s out there,” says Head Coach Mark Perry. “On the sidelines, he likes to crack jokes, and sometimes he’ll eat a cookie or two.”

The players embrace Ike as one of their own. Every night at practice, the team runs a special play. They call it the ‘Ike Special’.

“Ike runs it up the middle and the guys pretend to tackle him,” says Perry. “Everyone loves it and Ike gets to play.”

On Friday night, Coach Perry pulled the ‘Ike Special’ out of the playbook. He told the opposing Lake Stevens High School Football players what was about to happen and he called number 57 out on to the field.

“I told them if he gets 10 or 20 yards, that’s great,” Perry says.

The play call was a surprise to almost everyone in the stands, including Ike’s mom.

“I heard a lot of commotion and then I saw my son Ike run out onto the field,” says Kay Ditzenberger. “My first thought was, ‘I hope he doesn’t drop it!,’” she laughs.

4th quarter. 10 seconds left. Quarterback Taran Lee hands the ball off to Ike.

“I dropped back to hand it off, and Ike ran backwards a little bit,” says Lee.

Over the next 18 seconds, Ike ran a zig-zag pattern around the field, every step still inching closer to the goal line. Then he straightened out his run. The opposing players for Lake Stevens made admirable attempts to dive for Ike, but came up short, knowing Ike was going all the way. Then magic happened.

After a 51-yard run, Ike Ditzenberger crossed the goal line for a touchdown.

“I was bawling and everyone was screaming. It was such a special gift,” says Ike’s mom.

After a short celebration with his teammates in the end zone, Ike ripped off his helmet and ran toward the sideline with a grin from ear to ear. Thanks to both teams, Ike got his moment.

“To see the players and fans react the way they did was special,” says Coach Perry. “They went nuts. I’m glad it could happen.”

Snohomish High School lost 35-6, but the score didn’t matter. Already Ike is thinking about the future.

“He wants to play for the Huskies,” says mom. “But first, he says he wants a date for homecoming.”

31 for 21, Day 10

2010-10-11T10:05:00.001-05:00

Okay, I didn't get a post done yesterday. My sweet family gave me a much needed mom-cation.

I love you, Brent, Tyler, Emmalee & Nathaniel!!

31 for 21, Day 9

2010-10-09T18:31:00.008-05:00

First Day of School -- 2010

Tyler started 1st grade. Doesn't he look thrilled?!

Tyler LOVES the bus and he was very excited to meet his new bus driver and aide.

Bye, Mom!

Emmalee started kindergarten. She really didn't want to stand still long enough to take a serious picture.

She was also very excited about riding the bus. Her bus driver is great!

Nate started his first year of pre-k. Sadly, this is the only decent picture I got that morning.

31 for 21, Day 8

2010-10-08T19:31:00.001-05:00

Down syndrome Myths and Truths

Myth: Down syndrome is a rare genetic disorder.

Truth: Down syndrome is the most commonly occurring genetic condition. One in every 733 live births is a child with Down syndrome, representing approximately 5,000 births per year in the United States alone. Today, more than 400,000 people in the United States have Down syndrome.

Myth: People with Down syndrome have a short life span.

Truth: Life expectancy for individuals with Down syndrome has increased dramatically in recent years, with the average life expectancy approaching that of peers without Down syndrome.

Myth: Most children with Down syndrome are born to older parents.

Truth: Most children with Down syndrome are born to women younger than 35 years old simply because younger women have more children. However, the incidence of births of children with Down syndrome increases with the age of the mother.

Myth: People with Down syndrome are severely “retarded.”

Truth: Most people with Down syndrome have IQs that fall in the mild to moderate range of intellectual disability (formerly known as “retardation”). Children with Down syndrome fully participate in public and private educational programs. Educators and researchers are still discovering the full educational potential of people with Down syndrome.

Myth: Most people with Down syndrome are institutionalized.

Truth: Today people with Down syndrome live at home with their families and are active participants in the educational, vocational, social, and recreational activities of the community. They are integrated into the regular education system and take part in sports, camping, music, art programs and all the other activities of their communities. People with Down syndrome are valued members of their families and their communities, contributing to society in a variety of ways.

Myth: Parents will not find community support in bringing up their child with Down syndrome.

Truth: In almost every community of the United States there are parent support groups and other community organizations directly involved in providing services to families of individuals with Down syndrome.

Myth: Children with Down syndrome must be placed in segregated special education programs.

Truth: Children with Down syndrome have been included in regular academic classrooms in schools across the country. In some instances they are integrated into specific courses, while in other situations students are fully included in the regular classroom for all subjects. The current trend in education is for full inclusion in the social and educational life of the community. Increasingly, individuals with Down syndrome graduate from high school with regular diplomas, participate in post-secondary academic and college experiences and, in some cases, receive college degrees.

Myth: Adults with Down syndrome are unemployable.

Truth: Businesses are seeking young adults with Down syndrome for a variety of positions. They are being employed in small- and medium-sized offices: by banks, corporations, nursing homes, hotels and restaurants. They work in the music and entertainment industry, in clerical positions, childcare, the sports field and in the computer industry. People with Down syndrome bring to their jobs enthusiasm, reliability and dedication.

Myth: People with Down syndrome are always happy.

Truth: People with Down syndrome have feelings just like everyone else in the population. They experience the full range of emotions. They respond to positive expressions of friendship and they are hurt and upset by inconsiderate behavior.

Myth: Adults with Down syndrome are unable to form close interpersonal relationships leading to marriage.

Truth: People with Down syndrome date, socialize, form ongoing relationships and marry.

Myth: Down syndrome can never be cured.

Truth: Research on Down syndrome is making great strides in identifying the genes on chromosome 21 that cause the characteristics of Down syndrome. Scientists now feel strongly that it will be possible to improve, correct or prevent many of the problems associated with Down syndrome in the future.

31 for 21, Day 7

2010-10-07T21:24:00.002-05:00

31 for 21, Day 6

2010-10-06T19:24:00.003-05:00

21 Things I Love About Tyler

(In no particular order.)

1. I love Tyler's facial expressions when he is trying to get a laugh out of someone. He sort of raises one eyebrow and then stares at you and waits for you to crack up. No matter how hard I try to keep a straight face, he can get me every time.

2. I love that he can walk. It took him a long time to finally get enough strength and courage to start but once he did, there was no stopping him.

3. I love how much he loves Emmalee. I really believe she is his best friend. He gets super excited when he sees her and LOVES it when she plays with him.

4. I love how much he loves Nathaniel. There was a time when he wasn't so sure about Nate. Now that they share a room they have really bonded and play so well together.

5. I love his enthusiasm when he sees someone he knows. He'll call out, "HI DADDY!" (or whomever it happens to be.) It is awesome! It makes you feel like the most special person in the whole world.

6. I love listening to him pray. I only understand a couple of the words he says but I know that Heavenly Father understands him perfectly. It touches my heart and renews my faith. It is the sweetest thing.

7. I love how much he loves music. All kinds of music. He loves to sing and I am constantly amazed at how many of the words he knows to different songs. Sometimes I will hear him singing when he doesn't realize I am listening. He really loves listening to his dad play the piano. He has always loved that. Right now his favorite song is "Hey, Soul Sister" by Train. He asks for it several times a day by saying, "Hey Hey Hey...." We listen to it quite often.

8. I love watching him dance. He dances with his whole body and really gets into it. It is so fun to watch him! Watching him break dance is the best!

9. I love how much he loves his daddy. He has been a daddy's boy from the very first day we met him. I love watching the two of them interact and seeing the bond they have. It makes my heart melt to see them together.

10. I love how much he loves me. As much as I know that he is a daddy's boy, I also know that he loves his momma.

11. I love seeing him interact with animals, especially dogs.

12. I love how strong willed Tyler is. He is determined and stubborn. I'll admit, sometimes that can be frustrating. But I know that it is because of his determination that he accomplishes things. He will be able to accomplish anything he sets his mind to. He has a can-do attitude and never says that he can't do something. If he can't do something the first time, he doesn't get mad, he just says, "oops, try again," and works harder until he accomplishes it.

13. I love how excited he gets about things that might seem mundane to anyone else. He truly embraces life and sees the joy in everything. That is one of the greatest lessons I have learned from him.

14. I love that he loves to eat and is always willing to try new foods.

15. I love his giggle.

16. I love it when he says, "again" and then grabs your arm to blow raspberries on you. That's one of his favorite things.

17. I love hearing him talk! He seems to learn a new word every single day and it is amazing! Today's new word was gross.

18. I love his empathy for others. If one of us gets upset or cries, it breaks his heart. If one of the other kid cries, he gets so upset for them and says, "you okay?" He truly hates seeing someone else who is in pain or upset.

19. I love that he accepts EVERYONE. It doesn't matter who they are. He loves everyone. He is completely unconditional.

20. I love how he yells "HI" to every single person he sees. It is fun to take him shopping or to any public place. He does tend to get irritated if people don't say hi back. :)

21. I love that he is always willing to share.

Wow....I could go on and on. I may have to do 21 more things sometime later this month. There are just so many things I love about this boy. I am truly blessed to be his momma!

31 for 21, Day 5

2010-10-05T17:41:00.002-05:00

31 for 21, Day 4

2010-10-04T12:16:00.003-05:00

I love the pictures that I posted yesterday. They are so Tyler. My friend Shelly took them and she truly captured his personality. Tyler LOVES to make people smile and laugh and he has several facial expressions that he uses to get a response. The first and second pictures are so "Classic Tyler" -- one eyebrow raised, a bit of a goofy grin. I love it!

When I made the appointment for these pictures, Brent and I really debated about whether or not we should get Ty's hair cut beforehand. His hair was pretty wild, as you can see. It was uneven and super messy. In the end, we opted not to cut it first. Why? This is the most hair Tyler had had in two years.

For those of you that don't know, Tyler was diagnosed with Acute Lymphoblastic Leukemia, or ALL, on March 2, 2008. He started losing his hair pretty quickly after treatment began. His hair began falling out in giant clumps. I finally ended up shaving his head in the hospital. It was one of the most heartbreaking things I have ever had to do. When his hair started falling out, it was the first physical sign that he had cancer. It finally started to sink in that he was sick. His hair loss was much more difficult than I imagined it would be.

Thankfully Tyler is now cancer free. He is also finished with treatment. His hair has finally started growing in properly and he has had several hair cuts since these photos were taken.

When I look at these photos I am so happy that we decided not to cut his hair first. His hair is a sign of how far he has come. These pictures will always be a reminder that Tyler triumphed over cancer.

31 for 21, Day 3

2010-10-03T11:18:00.001-05:00

31 for 21, Day 2

2010-10-02T10:54:00.002-05:00

I think one of the greatest myths regarding people with Down syndrome is that they are always happy. I can be completely honest here when I tell you that that is not true. Tyler is not always happy. He is just like any other six year old. Granted, he is happy much of the time. But he also gets frustrated, angry, sad, scared, disappointed, overwhelmed and every other emotion you can think of.

The fact is, people with Down syndrome are more like everyone else than they are different. They love, they hate, they have fears, they have joys, they laugh, they cry. More than anything, they want to be included and treated fairly. As Tyler's mom, I want that for him more than anything else.

On my sidebar I have the Down Syndrome Creed posted. I think of this often. I know that Tyler will do all the things that other kids do. I know he is capable. I know that he will succeed. I also know that he will do it at his own pace. It may take him longer and that's okay. I am excited to enjoy the journey right along with him!

Happy Down Syndrome Awareness Month! 31 For 21, Day 1

2010-10-01T20:29:00.003-05:00

Hooray! 31 for 21 is here! I am really hoping for two things by committing to blogging each day this month.

1. That I can help to make others more aware of Down syndrome in general.

2. That I don't bore everyone to death.

The rules of 31 for 21 are pretty open. You don't have to blog about Down syndrome specifically every day if you don't want to. I'm glad for that rule but I am really hoping to have something pertaining to Down syndrome every day, even if it is just a picture of Tyler.

I would love topic ideas from all of you. Is there anything about Tyler that you'd like to know? Are you curious why we chose to adopt a child with Down syndrome? Do you have questions about Down syndrome in general? Please, ask away!

I am really looking forward to this month of posts. I am also looking forward to reading the other blogs that have also committed to 31 for 21. I LOVE connecting with other families.

Wish me luck!!

31 for 21

2010-09-29T11:41:00.002-05:00

I have seen the 31 for 21 blog challenge the past couple of years and always think I will commit to doing it. And then I don't. This year I decided to step it up and make the commitment.

What is 31 for 21? Well, October is Down syndrome awareness month. Down syndrome is also known as Trisomy 21. So, 31 for 21 is 31 days in October to blog about Down syndrome. Hooray!

I am excited to share more about Down syndrome on my blog and to blog more often in general. So watch out....you all may get real sick of me by the time the month is over.

Grab This Button

Things NOT to ask adoptive parents.....

2010-09-28T20:45:00.004-05:00

I saw this post today on another blog and just had to share it. Yes, we have been asked many of these questions. Not only are thy inappropriate, they are hurtful. I know most people mean no harm but it can be very frustrating. I LOVE to talk about adoption, especially with those who are genuinely interested. However, I don't like being asked silly questions by total strangers, especially in front of my children.

As adoptive parents to children with special needs, it seems that the questions are even more inappropriate. If I don't know you personally, it isn't your business. End of discussion.

There are some things that I know for sure. I know that we are blessed with three amazing children. I know that adoption is a miracle! I know that our children were meant to be in our family. I know that all of the years struggling with infertility, all of the tears, all of the fear and worry that we would never be parents, all of the heartache and pain and agony -- it was all worth it. These children, these amazing children, are ours in every sense of the word. No, they are not flesh of my flesh or bone of my bone but they are miraculously my own. No, they didn't grow under my heart. But they grew in it. I can not imagine our lives without these incredible children. I am truly blessed to be their mother.

Conversation with Emmalee

2010-09-24T20:27:00.001-05:00

Emmalee: "Mom, what happens if you die first?" Me: "Then dad will take care of you." Em: "Oh, so what happens if dad dies first?" Me: "Then I'll take care of you." Long pause.....Em: "Huh, I sure hope you die first."

Nice to know how I rank around here! I couldn't help but laugh. She is too much!

Moving On.....

2010-07-05T03:40:00.002-05:00

No doubt about it, I really should be sleeping. It is now 4:40 in the morning and I have my alarm set for 6:30. The movers will be here at 8:30. I still have things to pack up and get the children situated for the day. And yet, I simply can't sleep.

This is the last night in this house. The last time I will sit in my too small kitchen writing a blog post. The last time I will sleep in my too small bedroom. The last time I will wish we had more space, more bathrooms, bigger bedrooms. The last time I will complain about how much I hate hardwood floors. The Gardner family is moving on.

I am really excited about the new place. It has all the things this house doesn't -- larger bedrooms, a master bathroom, the laundry room on the upper level next to the bedrooms. It has carpet, a larger dining area for our table, a much quieter neighborhood, a double garage. Really, it is everything we want.

But this house......oh this too small house. I love this house. We have so many memories here. We have been here for four years.....four years today, in fact. Tyler had just turned two when we moved here and Emmalee was fifteen months. They were babies.

We knew right away the house was too small for us. We decided it would be fine for a year and at the end of our lease we would move on. And then life happened and we simply couldn't bring ourselves to leave the comfort of our little house.

I can't even begin to remember all the amazing events that have happened in this house. Tyler learned to walk here. Emmalee grew so much that she could finally see out the living room window. We got the call about Nathaniel in this house and we brought him home to this house. This is really the only house our children have ever known.

We've celebrated four Christmases, four anniversaries and several birthdays here. We had movie nights and friends over for dinner and had so much joy here. This house has become so much more than just a house. This house is now a home. And as much as I complain, as thankful as I am for all the things the new house has, I will truly miss this little home. I pray we can be as happy in our new house as we have been here.

Tyler

2010-04-29T18:48:00.000-05:00

Tyler has his final bone marrow biopsy tomorrow morning. I can scarcely believe that we have completed two years of treatment already. In some ways it seems like only yesterday that we received the horrible news that Tyler had leukemia. In other ways it seems as though this two years has dragged on forever.

Tyler has been cancer free for quite some time. This is an incredible blessing! We are praying that his bone marrow will continue to be free of cancer and that this nightmare is truly behind us.

Please pray that Tyler will do well, that his bone marrow will be free of cancer and that Brent & I will have peace and comfort.

There will never be enough words to say thank you to each of you for your love and support over the past two years. Each one of you have been a blessing in our lives, have stood beside us and loved us. The love and support we have received have been essential in getting us through this. The prayers have been heard and felt. There is no way we could have done this without all of you!!

Please continue to pray for our little friends who are still fighting. Please pray for the families whose children have lost the battle.

We love you all!!

Happy 5th Birthday, Emmalee!

2010-04-06T21:39:00.000-05:00

Five years ago today two incredible people made the decision to place their beautiful baby girl for adoption. Not a day goes by that we don't think of them, pray for them and thank our Heavenly Father for the awesome miracle of adoption! We are truly thankful to be Emmalee's parents and we will always love you R & M.

Emma-Ism

2010-04-03T13:36:00.001-05:00

Last night Emmalee, Nathaniel and I trekked out to the urgent care so we could all be seen by the doctor. We are feeling lousy. Anyway, Nate fell asleep in my arms and Emmalee looked over at him and lovingly said, "poor Nate, his batteries ran down."

Oh Emmalee!

2010-03-31T23:05:00.003-05:00

I love the funny things that girl says. She sure makes us laugh!

Emmalee was awake in the middle of the night a few nights ago. I happened to be sleeping on the couch because I've had a horrible cold and couldn't stop coughing. She came out to the living room and snuggled up with me. She asked me to tell her a story. There's one she really likes. It is "The Itsy Bitsy Spider" as told by Iza Trapani. (Incidentally, if you've never heard of Iza Trapani, you simply must check her out.)

At any rate, I recited the story for Em. The last line talks about the spider resting in the sun. In the book, the spider is wearing sun glasses and relaxing on her web. I told Emmalee how cool it would be if spiders really wore sunglasses and relaxed like that. She got very offended and said "Mom, you know nothing about nature!"

I love you, Emmalee!

Nate The Great

2010-03-23T21:41:00.005-05:00

My friend Shelly did some cute pics of Nate. He was less enthusiastic than Emmalee but I LOVE them. The first one is my favorite. :)

Beautiful Emmalee

2010-03-23T21:07:00.008-05:00

My amazing friend Shelly took these pictures. I am in love with them. I love how she was able to capture Emmalee's personality. I love that they are fun and unique. She is going to do some of Tyler in April and I can't wait! Thanks again, Shelly!

The End Is In Sight

2010-03-14T16:44:00.005-05:00

It seems impossible but we are near the end of Tyler's treatment. Tyler started his next to last cycle on Friday. We started week 103 on Friday and we have just about six weeks to go. He has six weeks of meds left and then he will have a final bone marrow biopsy and spinal tap. He will also have a couple more surgeries, one for his Mic-E button and one for his undescended testicles. The end is truly close.

On March 2, it was two years since the official diagnoses of leukemia. I have been trying to think back to all that has happened in our little family in that two years. There have been multiple hospital stays, infections and surgeries for Tyler, multiple hospital stays for Brent, two broken ankles and three ankle surgeries for me, a hospital stay and surgery for Nathaniel, personal struggles for Emmalee, constant stress and fear and worry. And yet, through it all, we have stayed strong.

We have realized time and time and time again that it is not a coincidence that we, the five of us, are a family. Together we have been tested and yet we have persevered. Our children, despite overwhelming circumstances, have thrived.

Tyler has met so many milestones this past two years. He learned to walk, his language skills are getting better all the time, he started kindergarten and he has shown everyone around him what it means to be strong!

Emmalee has had a tough time. She has had to put her own desires aside many times in order to allow us to take care of her brothers. And yes, there are times that she gets frustrated and upset, but for the most part she is patient, kind and understanding. She has learned greater compassion. She also now knows that she wants to be a doctor when she grows up.

Nathaniel continues to amaze us every day. He has also learned to walk. He started going to school this past fall and has changed so much. He is the sweetest little boy and we are so thankful that he is part of our family!

Many people have asked us over the past two years how we do it. How we stay strong despite our crazy circumstances. And the answer is simple. We couldn't have done it without a whole lot of help. I could never name all the people who have stood beside us through these past two years. Many are people we will never know. We have always had help with childcare, meals, Christmas gifts, surprises for us and the kids, random gifts of cash and other items, gift cards, phone calls, emails, hugs and so many prayers. Our family, friends, church family, cancer support group CURE and even strangers have made it possible for us to get through this.

And how do I even begin to talk about the incredible medial care Tyler has received? His doctors, nurses, child life specialists, home care nurse, patient care techs, social workers......how do we begin to thank them for saving our child? There simply aren't words.

I think the single most important lesson I have learned over the past two years is that we can not get through life alone. Heavenly Father put us on this earth together for a reason. He has sent earthly angels to help us through our trials. What an incredible blessing!

So now as we face the end of Tyler's treatment journey, we ask that you continue to pray. Pray that this truly is the end, that the cancer does not come back and that this amazing little boy will be able to go on and live a long, happy life. Pray that Brent and I will be able to have some peace, that we will not live in constant fear and worry and that we will be able to look back on the past two years as a gift and not a burden. And pray for all the others who must still fight this monster we call cancer.

Every year more than 10,000 children are diagnosed with cancer. This means that thousands and thousands of parents, grandparents, siblings and friends are affected by this horrible disease. Cancer isn't just about the child. Every single person that child knows and loves becomes involved. Please pray for all of these children. Several of them are children we have come to know and love as they have fought right alongside Tyler. Some have lost their battle and some continue to fight. Please pray for all of them.

We love each of you so very much. Thank you will never begin to express how we feel. Together we have fought and together we have overcome.

Confession

2010-03-09T12:04:00.002-05:00

I have a confession to make. I miss Arizona. I miss family and friends and warmth and I really miss our house. I miss going outside in January without a jacket, wearing flip flops on my feet. I miss having windows open and smelling the citrus blossoms. I miss not worrying about the next big snowstorm.

I only say this now because it is the beginning of March and the winter here seems so long to me. I love the change of seasons. I love how green it is here in the spring and summer and the beautiful jewel tones of fall. I even love the snow, for awhile.

However, when it is really cold and dreary, gray and cold, I miss Arizona. I do not feel this way from May to November. I think I would be a perfect snowbird. Yet another dream for when we magically win the lotto.

Home!!!

2010-02-26T09:32:00.001-05:00

We are home! Oh, how I love that word. Emmalee put it best. "Momma, we're a whole family again." How right she is.

Ty was released yesterday afternoon. The final decision was to not put in any type of line, including a PICC. Everyone agrees that Tyler is not a great candidate for a PICC simply because he is so rough on things and would likely pull it out. I honestly can't imagine him leaving a PICC alone. So for now, he will get the remainder of his Methotrexate as a shot each week. The last two doses of Vincristine will be done in clinic, via an IV placed by the nurses. He will go into the lab each week and have a finger poke to do his bloodwork. Given how close we are to the end of treatment, this seems to be the best possible plan.

Tyler tolerated the IV Vanco well until he finally lost his IV on Wednesday. They decided not to place another one and instead switched him to high dose oral Bactrim for five more days. Provided he has an uneventful weekend, (knock on wood,) he can return to school on Monday.

All in all, things are going well. Thank you to everyone for your love, prayers and continued support!

Update from Hotel Strong

2010-02-22T10:51:00.003-05:00

Good Morning!

Ty is still at Hotel Strong. Removing the medi-port was a fairly simple procedure and he did great. He was pretty cranky afterwards but he has been fine since.

Now they're just trying to come up with a plan. They have tossed around the idea of putting in a PICC line. Honestly, Brent and I just don't see that working well for him. I really don't think he would leave it alone. They just don't know what to do at this point. The team was just here but they are going to consult with Dr. Bruckner since she is his primary oncologist. For now, we'll just have to wait and see. He only has three cycles of chemo left which is good but he also has to do some IV antibiotics.

I'll update again when I know more. Please continue to keep him in your prayers.

Please pray for Brent also. He has several new sores and he is in a great deal of pain. He is trying to work and take care of the other kids while Tyler and I are here. He could sure use the extra prayers.

To Emmalee's Future Children

2010-02-21T10:26:00.004-05:00

I just had the most hilarious conversation with Emmalee. She said that when she grows up and is the mom, she will get to decide what foods her children will eat. I asked her what she will feed them and she said slime. Why slime? Because she doesn't want them to grow big because she wants them to stay babies so that's all she ever has to take care of. What a little goose!! She asked me if I have a recipe for slime and I told her no. She was disappointed but said that's okay, she'll make her own recipe when she's the mom.

Don't worry, future grandchildren, when you come to my house, I promise not to feed you slime!

Hotel Strong

2010-02-20T08:44:00.002-05:00

Good Morning....this comes from our favorite "vacation" spot, Hotel Strong. :(

Last night when I went to de-access Tyler's medi-port, I noticed that the skin around the dressing looked red. Sometimes this happens from the tape so I didn't really think too much of it. Then I took the needle out. It instantly gushed nasty, greenish/yellow pus. Not good. I realized right away that his port was probably infected and given his MRSA history, I didn't want to take any chances. I called the hem/onc answering service and Dr. Norman called back right away. She had me bring him into the ED and from there he was admitted. They took him into surgery about an hour ago to remove the medi-port. For now they are not going to replace it. They want to make sure the infection is gone first.

No idea how long he'll have to be here. I'm guessing it may be awhile considering the fact that without the medi-port, I really can't do IV antibiotics at home. I guess we'll just wait and see.

I'm just praying we caught it early enough that it hasn't spread throughout his system. His blood counts looked pretty good, considering, and he wasn't really running a fever.

That's pretty much what I know for now. I'll update again as I know more. Thanks for the love and prayers!

Think it will work?

2010-02-18T13:38:00.004-05:00

Dear Winter-

If I use my sweetest, gentlest voice and ask you very nicely, using all the magic words, will you please, please, please go away? I don't mean to be rude. Really. And don't think that I don't love you at all. Because I do. In December. During Christmas. But now it is almost the end of February. You have had your fun. You came, you snowed, (a lot!) you froze us to death, your winds have blown, we have shoveled, scraped, slipped, spread ice melt and endured day after day of gray skies. And now we'd like to ask you, ever so kindly, to leave, flee, vamoose, cease and desist, depart, withdraw, wrap-up, exit, do not pass go, do not collect your $200. In other words, GET OUT!!!

With Kindest Regards,

~Jodie

PS - Don't worry, I'll be ready to see you again in November.

Proof

2010-02-15T00:00:00.004-05:00

Here is proof that --

A. I do exist

B. I own other clothing besides sweat pants and pajamas

C. I actually do shower and fix my hair once in awhile

Tyler's Favorite Pastime

2010-02-14T23:57:00.001-05:00

I'll bet....

2010-02-14T23:53:00.001-05:00

I'll bet your princess sleeps with a crown on her head. Not mine. Nope. Mine sleeps in a pink and white hand crotched snowman hat. Jealous?

Word of Warning

2010-02-14T23:47:00.003-05:00

If your very sweet, generally happy but currently feeling-under-the-weather five year old asks you to turn on The Doodlebops for the gazillion-th time that day and you say no, be prepared. Remotes will fly my friends, remotes will fly.

Betcha didn't know your remote had so many pieces. The second battery is still MIA.

We always say that Tyler will play baseball in the Special Olympics. This is proof. That kid sure has an arm!

Hello Lurkey-Loos!

2010-02-09T21:21:00.003-05:00

See that handy-dandy item on the left side of my blog? It tells me where all the people who read my blog come from. I see folks from all over the place. However, no one leaves comments. It makes me quite sad, I'll tell you. So, if you are a lurker or just happened here by chance, jot me a quick note. I'm curious who you are and what brought you my way. In other words, lurk no more.

A New Day

2010-02-06T00:49:00.002-05:00

I am officially tired of last week's woe-is-me post. Yes, I was feeling sorry for myself. Did it show? Sometimes pity parties are necessary. I'm trying to get over myself.

Instead, I am trying to focus on the infinite positives in my life. Living in the moment. Enjoying the here and now. One day at a time, etc. etc. (Ahem, enough cliches.)

In other words, I'm realizing that if I could indeed rewind and start again, I'd miss out on some amazing things.

Like what? you might ask....

Nate doesn't talk yet. He's working on it. He has an awesome speech therapist. But he just doesn't talk. That does not, however, prevent him from making A LOT of noise. He is a loud little person. I love it. His favorite thing is to repeat sounds...ga ga ga ga and then wait for you to say it back. And once you do, watch out! He giggles and blesses you with his award winning smile. I live for that smile!

Emmalee uses words that are bigger than she is. What's great is that she uses them correctly. For instance, she asked me the other day to "observe the man walking across the street." She is a smart cookie.

Em's current obsession in life is planning her fifth birthday party. She wants to be ready. Never mind that it is still 58 days away. She has the theme picked out....she looks online nearly every day to "shop" for birthday party supplies. Turning five is a big deal. After all, she'll be a whole hand. She wants to invite EVERYONE she knows. Not kidding. I'm thinking that it is less about how much she desires to spend the day with those she loves and more about the potential gifts she may receive. Ah, to be almost five again.

Tonight I went in to hook up Tyler's midnight dose of IV Vanomycin. He woke up a little more than he usually does so I decided to lay in bed with him for a bit until he fell back to sleep. He said "snuggle" which just melted my heart. Tyler's idea of snuggle was a bit different than mine. I wanted to hold him in my arms, kiss his head and play with his hair. He wanted to lay by me, not really touching but knowing I was there. That's okay, I'll snuggle any way he likes. Just before he went back to sleep he reached over and took my hand. In that moment I knew that although life is crazy and we have our struggles, when we hold hands and snuggle and love, the bad parts just melt away.

Stop. Rewind. Play.

2010-01-30T11:37:00.004-05:00

Have you ever wanted to hit rewind on your life? Maybe go back in time to a different day and start again? That's how I have been feeling lately.

So where would I rewind to? December 29, 2007. That's the day we brought Nate home from the hospital. It was two months exactly before Tyler's leukemia diagnosis. It was eight months before I broke both ankles and spent six months in various casts and braces. It was before Brent got sick, before certain other personal trials, before life got totally crazy.

Now I'm not naive enough to believe that we would have zero trials if we were to rewind to that day and start again. Life is about trials. We can't know the good unless we know the bad. I get that. But some days I wonder if we were to rewind if the trials would be the same. Would it all happen exactly as it did? If so, would we handle it differently?

Don't get me wrong. Not every single day has been horrible. We've known a lot of positive these past two years. Brent and I have grown closer as a couple. Tyler has taught us what it means to be strong and to fight. We've had so much help, from so many people. We've met friends that we would never otherwise know. No, it hasn't all been bad.

But some days -- days like today when Brent is sick and in bed and Tyler is fighting a fever and making me worry and Emmalee is struggling to stay in control of her emotions and my house is a disaster and the laundry is planning a hostile takeover and I have a head cold that refuses to give up and all I really want to do is take a much needed vacation -- it is these days that make me wish I could rewind.

Tomorrow will be a better day.

Anna's Wish

2010-01-07T09:15:00.004-05:00

I need to update....I have pictures, stories, etc. But this post is dedicated to Anna. Anna lost her battle with cancer on January 2. She was five years old. Anna was so courageous and fought for sixteen long months. Her parents are, of course, devastated.

Anna loved helping others and loved making people happy. She truly loved giving gifts to other people. As a way to honor her and her giving spirit, her parents have come up with a way to help other children who are also fighting cancer. They have created Anna's Wish.

Anna's Wish will collect donations throughout the year and will use 100% of those donations to purchase Christmas gifts for cancer patients and their siblings. What an awesome way to honor Anna!

Please consider donating to Anna's Wish. Please help keep Anna's memory alive.

God Bless You, McKinney Family!

Brent Update

2009-11-24T23:04:00.000-05:00

Oh my goodness, I guess it is high time I updated!

Brent had his appointment in NYC last Friday. The appointment went really well. Dr. Yazici was amazing, kind and very, very smart. He does think it is Behcet's. However, because Behcet's is a clinical diagnosis and doesn't have an actual test, he ordered a ton of blood work to rule out other things. Brent had the blood drawn at NYU Friday and they literally took about 15 different vials. As the doctor said, he does not think the blood work will show anything but he wants to make sure he rules out everything else. He said he is 98% certain Brent has Behcet's. He did start him on one medication, an anti-inflammatory, and gave him a prescription for another. However, he wants to work with Dr. Shelly, the infectious disease doctor, right away and get Brent on some sort of antibiotic. His main concern is that many of the drugs used to treat Behcet's are immuno-suppressors. One of the main ones is Methotrexate. Given the active MRSA infections, he doesn't want him to start the other meds until the infection is more under control, for obvious reasons. We explained to him that that made total sense given our experience with Tyler.

Brent will have to see some doctors here very soon. He needs to have a colonoscopy as well as see an ophthalmologist. Dr. Yazici is very concerned about some of the eye issues Brent is having and wants to have those checked out soon.

We also have to find a new PCP, soon! We do not want to work with our current doctor any longer. We explained to Dr. Yazici how he has treated Brent and he was disgusted. He is also very concerned with how much narcotic pain meds he has prescribed. He does need to have a PCP to work with so he advised us to fire our current doctor and find a new doctor as soon as we can.

There is still so much to digest. All in all, it went great and we feel like we are finally on the right track. Dr. Yazici is very hands on and very open to communication. He told us to email him directly and not to hesitate to call him if we need anything at all. He will need to see Brent every four to six months so we'll be going back again in not too long.

It is a huge blessing to feel like we are finally on the right track. Knowing that we have a specialist on our side, who is willing to help Brent get back to good health, means the world. It has been a long journey thus far and although we are far from the end, we are finally starting to see some light.

Thank you all for your continued thoughts and prayers. We are certain that it is because of the prayers and love from family and friends that we are strong enough to get through this. Happy Thanksgiving to all of you!!

Thanks, Girls!!

2009-11-02T20:32:00.003-05:00

Hey Girls, you know who you are.....we love you! Thanks for all the great care of Natey. :)

Bring it on.....

2009-11-02T18:46:00.002-05:00

So much news. First with Brent....my friend Nikki emailed me and said she thought we should look into something called Behcet's Disease. Brent and I couldn't believe the similarities. We are praying this is the answer. We found a doctor at NYU in New York City that is a top specialist in Behcet's Disease. We contacted him and his answer was quick and unexpected. He asked us to come to New York City and meet with him. We are thrilled! He cleared some time for Brent in his extremely busy schedule and we had planned to go to NY tomorrow to meet with him on Wednesday. (More about that in a minute.) We are praying that this is the answer and that Dr. Yazici will be able to help. The more we learn about Behcet's, the stronger we feel that this is the right path. We are truly thankful that Dr. Yazici is willing to see Brent on such short notice. I spoke with his patient coordinator and she said that he sees patients from all over the world. We feel so blessed that we live close enough to the city that we can travel there easily.

My mom arrived last Monday to help with the kids and stay with them while we're gone. We are so glad that she is able to be here. We have never left the kids while we've gone out of town so this is a big step for all of us. We pray that things will go well while we're gone.

As I said, we had planned to leave tomorrow. But of course, life can never be plain or dull or boring for us. Over the weekend, we had a little bit of drama.

On Thursday night I noticed that Nate had a sore on his upper left thigh. I just knew that it was a MRSA sore. Sure enough, by Friday morning, he was running a fever and the sore was huge, hard and hot to the touch. I called and made an appointment for him for that afternoon. By the time we got there, his fever was 102 and he was hurting so bad that he was shaking. The pediatrician sent us directly to the ER. They gave him some mild sedation and incised and drained the sore and sent us home with antibiotics. We were hoping that would do the trick. Sadly, it did not. By Saturday night his entire scrotum was swollen and red and full of infection. Back to the ER we went. They admitted him and on Sunday morning they took him down to surgery to incise and drain again. They wanted to do it in the OR so they could give him more sedation and make sure that they got it all.

That poor little boy! He has been in so much pain and I feel so badly for him. He spiked a fever of 104 last night and gave us all a scare. But, he has been fever free since then and they sent us home this afternoon. We are so glad!!

Needless to say, we have postponed our trip. Brent and I called this afternoon and they were able to reschedule his appointment for Friday the 13th. We are going to leave on Wednesday and spend a couple of days in NYC. Hopefully Brent will feel up to the trip.

So that's our crazy life. Not sure what I would do if things ever slow down around here. Maybe I could sleep. :)

Thanks to everyone, as always, for your love and prayers.

Nathaniel's Song

2009-10-16T21:36:00.003-05:00

You know how certain things can trigger memories? Smelling cinnamon at Christmastime reminds me of family holidays when I was growing up. Hearing wind chimes reminds me of my Grandma's house. Watching "Hope Floats" reminds me of my friend Marcella.

For me, though, music is the strongest trigger. Sometimes I will hear a song on the radio that my dad used to sing to me when I was a child. Suddenly I am five years old again, standing on my dad's feet as he danced me around the kitchen while he sang to me. If I hear a song from my high school days I'm transported back to the Career Center during Marketing class with Ms. Boyd. And there's a certain Mindy McCready song that always reminds me of a guy I once thought I was in love with.

Today I heard Nathaniel's song. I never even realized he had a song until today. I was driving and it came on the radio and I was immediately overcome with emotion and memories.

It was a beautiful Fall afternoon in September, two years ago. The phone rang and it was Adoption STAR. I remember clearly the case worker introducing herself to me, as we had never met before. She explained that there was a baby boy born a couple of weeks previous and they were searching for an adoptive family. She told me all of his information -- he was a micro-preemie, born fifteen weeks early. He was very ill and they weren't 100% certain he would survive. Nevertheless, he needed a family and they were hoping we would consider adopting him. I can remember frantically writing everything down and hoping I wouldn't forget anything so I could repeat it all to Brent. I remember being totally speechless and trying to take it all in. And in my heart, I already knew this was our child.

While I was on the phone, Emmalee was watching "Piglet's Big Movie." This song was playing as I was learning all about our soon to be son. When I heard it again today, it brought back all the emotions, all the excitement and fear, all the joy. To me, this will forever be Nathaniel's song.

Prayers for Tyler

2009-10-11T20:26:00.002-05:00

Tyler is having surgery in the morning to replace his g-tube. He's had the surgery before and the procedure itself doesn't scare me. I just hate having to put him through it at all. But, we know that the g-tube is necessary, especially for him to continue his chemo treatments. He is a brave boy and I'm sure he'll sail through with no trouble. He'll be inpatient at least one night, just to make sure there are no complications. Please say a little prayer for him.

Prayers are Answered

2009-10-08T09:00:00.002-05:00

Hurry up and wait. That's how I feel lately. We seem to take one step closer to an answer only to fall two steps back.

There is good news, though. Actually, there is great, incredible, fantastic news. There is NOT yeast in Brent's blood! It took four lab techs at two hospitals but they are sure there is no yeast. I can't even explain what a relief this is. We found out yesterday that having yeast in your blood is extremely serious. On it's own, regardless of the original cause, it carries a 30 to 40% mortality rate. I'm not sure either Brent or I grasped the seriousness of it until they told us that. So finding out that it was not there was a feeling beyond relief. Once again we realize that prayers are heard and answered.

So, once again, we wait. They decided last night that since there was no yeast in his blood, and there aren't any test results back yet, he might as well come home. We are thankful. He is miserable but it is always easier to be miserable at home than in a hospital room. Besides, I may not be a great cook but I do a bit better than the hospital cafeteria. :)

We are praying that we will find out some results today. Some of the tests can take several days to come back. Some may be back today. I've got a phone attached to me at all times.

The day dawned bright and beautiful. A bit chilly but not in a bad way. The sky is blue and the sun is shining...a perfect Autumn morning. That alone gives me renewed hope. We'll take it one beautiful day at a time.

$1 Fundraiser

2009-10-07T15:45:00.003-05:00

Well, as you can imagine, this whole thing with Brent being ill has taken a toll on our finances. He does receive disability pay but it is 60% of his regular pay. We are incredibly blessed that he has an amazing job and such awesome benefits.

My very sweet friend Kerri decided that she wanted to help. So she set me up with a Paypal donation button. If you can spare $1, that would be a huge help to our family!!

Thank you Kerri for your love and support!! We love you!

Brent Tuesday Update

2009-10-06T16:04:00.001-05:00

Alright, here's what I know today. Brent spent yesterday in the ER and came home last night. They chose not to admit him. We were both surprised and apparently rightfully so. They called this morning and had us bring him back. There were some concerns in his blood cultures. One culture showed yeast. They aren't sure why his blood has yeast in it. Again, there is some underlying cause that no one seems to have an answer to.

We are thankful for the fact that the doctor called him back in. At least we finally feel like they are taking this seriously and working to get us an answer. Hopefully we should know something soon. They are finally taking active steps to come to a diagnosis.

Right now I am attempting to not let my imagination run wild. Attempting. It is hard not to worry. I have not allowed myself to go to Google. I'm not sure I'll get any answers anyway.

I just want answers that are real. I want something concrete and some sort of plan. My friend Amy gave me the greatest analogy today. She said that this whole situation is like being a swimmer that is stuck on the starting block. They put you up there and tell you to get ready and then leave you there. Then your legs start to cramp up and your back starts to hurt and you are just praying that someone will finally give you the okay to jump in and swim. You don't even care what stroke they want you to swim, as long as you can get in the water. Right now that's how I feel. We have been on the starting block for so long. It's time to start swimming. As long as we know what we're facing and what we can do, we'll be okay.

Thank you to everyone for your love and prayers and support. I can not imagine doing this without you. We are finding so much strength through others right now and we love each of you so much!

I'll update again when I know more.

Help Make Raymond's Birthday Magical

2009-10-03T22:27:00.003-05:00

I recently read about a young man named Raymond. Raymond is nearly 19, his birthday is coming up this month. Raymond has developmental delays and therefore functions closer to the level of an eight year old. His amazing mom posted a wish on www.wishuponahero.com asking for birthday cards for Raymond's birthday. Raymond loves to get cards but they have very little family and his mom would love for him to get as many cards as possible.

Let's help make Raymond's wish come true. If you'd like to send a card, you can check out the wish HERE. Let me know and I can get you the mailing address.

Thanks!!

Brent CaringBridge

2009-10-03T09:00:00.001-05:00

I decided to go ahead and create Brent a CaringBridge page of his own. That should make it easier to follow along on this journey while we try to figure out what is making him so ill.

http://www.caringbridge.org/visit/brentgardner

Thanks Sue!

2009-10-02T20:05:00.002-05:00

While blog hopping tonight I clicked on my friend Sue's blog and found this post. I just had to share. Thank you, Sue!!!

An update, finally.....

2009-09-30T20:47:00.002-05:00

Thanks to everyone for the emails, phone calls, etc. I figured it was high time to get an update posted.

Brent was released from the hospital last Tuesday. Basically we felt like they were at a loss as to how to help him and instead of trying, they sent him home. I am frustrated in many ways by this. They told him to continue taking the Bactrim, which makes him sick and isn't really helping. I'm more and more convinced that he is allergic to it. If he didn't already have the appointment with the infectious disease specialist, we would have fought really hard for him to stay in the hospital. However, knowing that he was going to see Dr. Shelly, we decided to get him home and let him rest here.

Monday this week brought about its own challenges. Tyler's g-tube came out. We're not exactly sure when. It was in and working fine on Sunday night and I saw that it was in on Monday morning when I changed his diaper. However, Brent went to change him for nap and it was out. I tried getting it in and it wouldn't go. So off to the ER we went. They tried but had no luck. They decided to admit him and hope that they could get him scheduled for surgery yesterday. That didn't pan out. So now we are home again and hoping to get surgery scheduled next week to replace it. Having a vacation at Hotel Strong was not exactly top on our list. But it was nice to see all his girls, (the awesome nurses and techs) and also a couple of friends who are inpatient right now.

Brent had his appointment with Dr. Shelly yesterday. For the first time in a long, long time, we finally feel like we have a plan of action. Dr. Shelly spent a lot of time listening to Brent and I, attempting to understand the situation and reading through all of Brent's medical records. He spent a lot of time studying his labs and trying to understand everything. Finally he explained things to us in a way that makes some sense. He told us to ignore the MRSA for a minute. He said that he doesn't consider Brent to be a person who simply has MRSA. Instead, he considers Brent to be a person who gets these horrible, open sores that refuse to heal. The sores can, and do, appear anywhere. He has had them on his hands, legs, arms, feet, etc. He gets them, they get larger and larger and they don't heal. The question is why. What underlying issue is there that is causing him to get these? Second to the sores is the fact that our family is colonized with MRSA. Once he develops one of these sores, the MRSA takes advantage of it and makes it worse. So, the doctors and the hospital see the infection and attempt to treat it. But they aren't trying to figure out what caused the sores in the first place. That is where the mystery is.

So now what? First of all, he told him to stop taking the Bactrim. THANK GOODNESS!!!! He said that it clearly isn't helping anyway and it is causing more harm than good at this point. He said that we need to be diligent in watching for fevers and such because of the MRSA. The next thing he is doing is a whole lot of blood work. He is going to test for many things that no one has looked at yet. Everything from rheumatoid arthritis to lupus to hepatitis, and the list goes on and on. He is thinking that Brent has some sort of autoimmune disorder that is causing him to not be able to heal these sores on his own. That would also explain his other symptoms....fatigue, muscle aches, etc.

So for now, we wait again. We are praying for an answer. We feel like at this point, we can handle anything as long as we know what it is. Brent has been a trooper through all of this. I know he is miserable. I know he is in pain. But he is strong and I know we can make it through this.

Please continue to pray for our family. Your prayers are heard and they are being felt!! Thank you for all the love and support you give to us!!

Brent Monday Update

2009-09-21T10:48:00.002-05:00

Just a quick update. Brent has developed a very scary complication to things. They had to remove his IV because it got infected. They put in a new one and that was almost immediately infected as well. They won't even draw blood at this point. Every time they poke him, he gets a new infection. His arm is starting to solidify where the infections are. Because of this, they obviously will not put in a central line. If it were to get infected as well, it could be fatal.

Now they are at a loss as to what to do. They are thinking of sending him home because there really isn't any reason to keep him in the hospital. He will come home on oral antibiotics again. Right now there just isn't anything else they can do for him.

He does have an appointment to see an infectious disease specialist next week. We are praying that they will be able to give us some more help.

This whole thing is just scary to me. I am worried about him. I'm worried that the oral antibiotics won't help. I'm worried that this will just continue to happen. I just don't know what to think at this point. As much as I want him home, I also worry that we're just going to end up in the same position soon. I guess for now we'll just have to wait and see.

Brent Update

2009-09-20T17:09:00.001-05:00

Brent is in the hospital again. This is the second time in about a month. Once again, he is fighting MRSA.

The Infectious Disease docs saw him on Friday. They are all in agreement that something besides the MRSA is going on. Yes, MRSA is a nasty infection. However, most people who get it can fight it off either on their own or with oral antibiotics. For many people, it doesn't ever return. They are concerned that there is something else going on with Brent that is causing him to get this over and over and over without being able to fight it on his own. So now they are talking about doing some tests to figure out if there is something going on in his immune system. So that's kind of the next step. They are also talking about sending him home with a central line, probably a PICC line, so that he can continue IV therapy at home. This is something we have been pushing for for a long time. We are really glad that the docs are finally starting to come around to this idea. The bottom line is that oral antibiotics just aren't enough for Brent. This infection continues to return, he goes to the hospital for a few days of IV treatment, comes home on oral antibiotics and we're back in the same boat again in a few weeks. All in all, this is his fifth hospital stay for MRSA and I'm not even sure how many times he has fought the infection out of the hospital. More than anything else, we just want him to get well. Hopefully by tomorrow we should have more information.

The other concern with Brent coming home without a treatment plan is Tyler's health. Obviously Ty has also battled MRSA quite often. Tyler's immune system is compromised due to the chemo and they're concerned that Brent and Ty are just passing the infection back and forth to one another. Tyler's Oncology team is starting to advocate for Brent and Tyler as well so that we can come up with a plan for both of them. We are so thankful for all of Tyler's doctors and nurses. They truly do have his best interest at heart as well as the rest of our family. We are so blessed!

Unfortunately Tyler has the same nasty head cold that Emma and I have. He has been pretty miserable today. Thankfully Em seems to be feeling better though she still has a yucky cough. Nate has started coughing and has the runny nose. Sounds like a barrel of laughs, doesn't it? :) The kids all want to go see their Daddy but I'm afraid to take them up there. I don't want to share germs or contract any new ones.

I will update again tomorrow when I know more. Thanks for the emails and comments left here and the love and prayers. We truly appreciate it!

Kid-Isms

2009-09-16T17:58:00.003-05:00

This isn't just about Emmalee. :) But I have to share what she said first. She is so dang funny.

Emmalee was eating dinner and spilled a little. Her reaction? "Dang, and on my beautiful wedding dress and everything. I'm doomed!" I swear, she kills me sometimes!

The other comment recently came from Tyler. I just want to cry thinking about it. We were having dinner the other night and I was helping Ty eat. He looked at me and said, "I want to try." Wow! He asked, in a full sentence, for something he wanted. I am so proud of this child!

Fun Times in the Middle of the Night

2009-09-02T03:50:00.002-05:00

Yes, it's 4:45 in the morning and I am awake. Or still awake, I should say. Darned insomnia. Too bad I didn't go to bed when I had the chance. Since I was up anyway I decided to Jenny, our dog, out to run. She loves to do that at night. Well, she ended up getting sprayed by a skunk. Lovely. I didn't realize that's what had happened until I had already let her in the house. So now the house smells awful. Luckily I found a good skunk smell remover for Jenny. I had to send Brent to Tops for peroxide. Thank goodness they're open 24 hours a day. It seems to have helped some though I will probably have to do it again. Incidentally, it is 32 ounces of peroxide, a cup of baking soda and some dish washing liquid. Mix well, rub it in, scrub well for about ten minutes, rinse well and ta-da. The benefit of that is apparently fleas don't like water or peroxide or baking soda. I didn't know she had any fleas. Now I realize the flea treatment hasn't worked so I'll have to try the more expensive one. Good to know. The other plus is that I just finished scrubbing the bathroom. Didn't really want to shower in there after giving the skunk smelling dog a bath.

I'm telling you, there are good times to be had around here in the middle of the night. Too bad they don't seem to include sleep.

Any tips on getting the skunky smell out of the house??

Too Funny!

2009-08-19T17:48:00.002-05:00

Emmalee just asked me what would happen if the little mouse got out of the computer!!! I asked what she meant and she told me she thinks that the computer mouse is a real little mouse inside the computer and that he moves around inside and pushes all the buttons and stuff. She is too much!!!

Yard Sale & Update

2009-08-18T20:06:00.001-05:00

Ty is doing pretty well. He is a little bored with having to be at home and not really getting out. It may be a long two weeks. :)

Brent and I are planning to have a fundraiser yard sale on the 29th of August. Ty has some medical bills that aren't covered and we are also hoping to raise some extra funds to replenish our savings. When Ty was first diagnosed Brent took a lot of time off work. Then I broke my ankles and Brent was in and out of the hospital....needless to say our savings is wiped out. So we are having a yard sale. If you have items that you would like to donate to the sale, we would greatly appreciate it!! Just let me know and I can make arrangements to pick things up.

Thank you all for your continued love and support of our family.

Tyler Update

2009-08-15T23:09:00.003-05:00

Well, I should know better than to say that things are going well. Ty had clinic yesterday and I am sad to say that he is fighting yet another horrible MRSA infection. His stomach and chest are covered in little sores and it is very, very red and irritated. I can't imagine how it must feel.

MRSA seems to like our family. Brent has a horrible sore on his foot right now and I just got over another round. It's bad enough for us to fight it. But when Ty gets it, it makes me very nervous. Thankfully his counts are still holding steady and he hasn't been running a fever. Because of that, and the fact that we have been down this road several times before, they let us come home. Ty has to be on IV antibiotics, (Vancomycin,) every eight hours for the next two weeks. We pray that this will do the trick and we can avoid a Strong vacation.

The saddest part of this whole thing is that Tyler will have to miss his last days of pre-school. I am so disappointed. He has truly enjoyed getting back to school this summer. He is just so cute getting on the bus!

So for now Ty is on quarantine again. Please continue to keep him in your prayers.

Much love!!

Emma-Isms

2009-08-09T10:33:00.003-05:00

I haven't posted Emma-Isms in awhile. That kid cracks me up!!

We were driving the other night and Emmalee was asking about school, when it will start, where they will go, etc. I told her that she only has one more year of pre-school until she goes to kindergarten. I told her that I was kind of sad and that she and her brothers are growing like weeds. She got really offended and told me, "Momma, we are not weeds. Weeds are yucky. We are growing like trees!"

Last night Emmalee asked if we could go to Chuck E Cheese after church today. We told her no, that we stay home on Sunday. She wanted to know why so we told her that Heavenly Father has asked us to stay home, not spend money, and keep the Sabbath Day holy. She thought for a few minutes and then told us that Heavenly Father told her she could go to Chuck E Cheese on Sunday. Brent asked her when He had told her that and she said, "before I left heaven."

She's got an answer for everything!!

Our Crazy Life

2009-08-08T08:49:00.003-05:00

I have so much to catch up on blog wise that frankly, I am overwhelmed. Do I attempt to write it all out? Do I post it all in one long post or do I make them all separate? What if I don't remember everything? What to do, what to do? THE PRESSURE!!!!

Okay, it isn't that bad. Here's a quick run down of the past, oh, I don't know how long.

I still have tons of pictures to post from our trip to Nevada and Wyoming. I miss my family. So does Emmalee. She asks about them all the time, especially her cousins. She sure had fun getting to know them. We went primarily to celebrate with my oldest niece, Miranda. She graduated from high school. Personally, I still cry thinking about it. I'm not exactly sure how my sister functions. I mean, her girls are growing up. FAST. How can it be possible that Ranny is heading to her first year of college? COLLEGE! Wasn't she born about five minutes ago? She turned eighteen in July. Merissa is nearly seventeen. Marriah will be thirteen. I watched her come into the world. How can that possibly be thirteen years ago?

I can't even explain how much I love my nieces. I love them like my own children. I miss them every single day. Living so far from them is beyond difficult. When Brent and I got married and I moved away I left a piece of myself with those girls. No matter how old they get, I will always see them as they were the day I got married. I will always treasure the years I spent as their nanny. Most of all, I will always be thankful that I have the privilege of being their aunt. I love you, girls!!

Okay.....what else.....

Thankfully Brent did not end up having the Swine Flu. He did have the flu. Just not the Swine Flu. Our doctor said that the regular flu is just as nasty and I have to agree. He was pretty miserable. Thankfully the kiddos seemed to escape it.

Brent still struggles with MRSA and the horrible side effects of having that infection. As I type this, he is at the doctor because he has a new sore on his foot. I wish I could wave a magic wand and get it to heal. Tyler, Emmalee and I also struggle with MRSA but not to the same extent. Hopefully Brent will get some relief quickly.

Tyler has been doing well. He is holding steady health wise and we haven't, (knock on wood,) had a Strong Vacation in several months. That is always good news. His counts have been great and he has been pretty healthy minus some cold symptoms and the like. We just pray that it keeps going like this.

Ty LOVES school. He has enjoyed every single day. He wakes up in the morning and the first thing he says when I open his door is, "okay, shoe shoes, go, the bus!" He is having such a good time. I am so happy about that! I was worried that he would be nervous or timid. I should have known better. He jumps into the bus drivers arms. He waves goodbye. He is sad when he gets home. My favorite part of the day is when he gets home and goes on and on about his day. Of course, I can't really understand what he's telling me but I love it none the less. What an amazing kid he is!

Ty will be going to kindergarten starting in September. After much deliberation, Brent and I decided that we were going to go ahead and start him at the regular elementary school. We debated quite a bit about weather or not to keep him at Mary Cariola or to send him to a typical school. We LOVE Mary Cariola. They know him there. He loves it there. It was not an easy choice. We visited the elementary school's special education classroom, met the teacher and checked out the school. We loved it also. The teacher actually got her start at Mary Cariola and taught there for several years. The classroom is very cheerful and the special education curriculum is exactly what we had hoped it would be. Ty will receive all his therapy at school. He will be in a class with very few students and many aides. There is a strong focus on language and that makes us very happy. There will be many opportunities to spend time with his typical peers. All in all, we think it is going to be a great choice for him. We are also comforted by the fact that if it doesn't work out, we can go back to Mary Cariola. But we feel like we need to give him the chance at the regular school. We'll hope for the best and pray a lot. :)

Emmalee has been having a good summer. That's my opinion. From her perspective, it is boring. She's such a hoot. She did attend Vacation Bible School for a week and she had so much fun. She is very ready for school to start again. She is still a total crack up and still keeps me on my toes. She will go to pre-k again in the fall. She is going back to the same class she was in last year. I am so happy for her. She loves her class and her teacher. The only difference this year is that she will go three days a week instead of two. She is so excited!!

Nathaniel is doing well. He went back to the doctor and is taking some additional medicines to help with his constipation issues. He also had a gastric emptying study done. That determined that his tummy doesn't empty quickly enough after he eats. This is the reason his tummy resembles a pregnant woman. We added a new medicine for that and it seems to be helping. He is getting a little more regular. We'll just keep going and see if these steps make a difference. Lucky for us he is such a trooper. He just sort of takes it as it comes.

In other Natey news, he is WALKING!!!! I love it! I love seeing him toddle around. He is too cute. I'll have to try and post a video. He really gets a kick out of being able to get around. Sometimes he gets so excited about walking that he tries to run and then he just topples. It's pretty funny. With walking has come climbing. That's the not so cute part. LOL I don't so much mind that he can get up on stuff but he can't always figure out how to get off properly. He either falls or stands there screaming until someone comes along and gets him down. What a goose.

In further Nate news....he is going to start school in the fall. Yep, it's true. He is going to attend Mary Cariola. It seems strange to think of sending my two year old on the bus. But the fact is that when Tyler got sick, Nate's therapy sessions took a nosedive. There were many, many cancelled sessions because Tyler was neutropenic and we couldn't let anyone in the house. That put Nate behind on his therapy schedule. He is playing catch up pretty well but after careful consideration, we realize that he would benefit much more from doing a center based program. He will get OT, speech, PT, music therapy and any other therapies they think he would benefit from. Brent and I are so excited for him! We aren't sure yet if it will be a three day a week or a five day a week program. Either way, I am so thankful to know that he will finally have the opportunity to get all the therapies he needs. He is still very delayed in many areas and knowing that he will be able to get all he needs is a blessing. I know he will love going and I also know that he is going to be everyone's favorite. :)

Collin was home for a whole month!!! It was fantastic. He has grown and changed so much. I can't believe it had been two years since I saw him last. He is way taller than I am, which isn't saying much. But he is also taller than his dad. He is so much like Brent in so many ways. He is very musical and plays the piano by ear, just like Brent. He is a very good big brother and the kids loved having him home. I think they were a little overwhelming for him at times since he is used to being the only one at home at his mom's. But he handled it well. He was very patient with them....most of the time. :)

While Collin was home we had a chance to do a few fun things. We saw a couple of movies and he and I went to the Hill Cumorah Pageant. We had such a good time.

Brent & Collin were able to spend about ten hours in New York City. It was a fast, tiring trip but I think they enjoyed it. We were able to get some buddy passes from a good friend of mine who works for JetBlue. So Brent & Collin flew to NYC on Monday night & took the subway to Time's Square. Brent had enough reward points from all his work travels to get a hotel for free right in Time's Square. They did a lot of walking and picture taking, got about an hour of sleep and took the subway back to the airport for Collin's very early flight to Phoenix on Tuesday morning. Then Brent flew home. Not much of a trip but since neither of them had ever been there before, I think they had fun. Someday we'll have to take a real trip to the city.

We attempted to get some pictures of all four kids together while Collin was here. It was interesting. Imagine trying to get three small children to smile and look at the camera at the same time. We have about 200 pictures of Collin looking at the camera and smiling while the other three are in various poses, facial expressions, etc. It was a riot. I think I'll have to order a collage for Christmas cards this year. Either that or learn how to edit the pictures.

We also have a new family member. Jenny is about four months old and she is our new fur baby. She is a lab, retriever mixed with either some sort of spaniel or setter. Not sure. We don't care. She is a very sweet puppy. Although I must admit that having a puppy is about like having a new baby. Thankfully Jenny was already house broken. I will, however, be thankful when she is past the chewing, jumping phase. She is very smart and is learning quickly. She loves the kiddos and they adore her, most of the time. :) She is a great addition to our family and even Brent likes her. We are hoping to work towards training her as a therapy dog for the boys and even for Emmalee.

So I guess the only person I haven't updated about is me. I had a birthday....turned 34. Collin thought it was funny to put my candles on in the opposite order and make me 43 instead. I didn't find the humor.

I will be honest....I have been struggling lately. I have some health issues that I have ignored for a very long time. I can't ignore them any longer. I am going to the doctor on Monday and praying that we can come up with some answers. Life is never dull, for sure.

Well, if you have made it this far, I commend you! Thanks to everyone for your continued love and support of our little family. We love you all!!

Happy 10th Anniversary To Us

2009-07-23T15:12:00.002-05:00

Today is our 10th anniversary. In some ways it is hard to believe ten years have passed since we got married. And then again, so much has changed in ten years. Here are a few of the highlights --

We have lived in five different cities and three different states -- Arizona, Utah, Arizona again and New York.

We have lived in seven different houses.

We have owned five different vehicles.

We have had three dogs and four cats.

Between the two of us we have had ten major surgeries.

We have suffered through infertility and miscarriages.

We have adopted three amazing children. Each one has been a confirmation that adoption is a miracle and God sends the right children to the right family, no matter how they have to get here!

We have suffered the loss of Brent's Dad and we miss him every day.

Brent has had four different jobs.

We have watched our child suffer through leukemia and keep fighting. He is an amazing kid!

We have each had several callings in church.

We have traveled to many different places. Some of my favorites include the Oklahoma City Memorial, the Grand Canyon and Disneyland.

We have endured many trials and had many blessings. No matter what, I can't imagine doing this with anyone other than Brent. He is.....well, he's amazing. There simply aren't enough words to describe how much I love that man. He puts up with me through all my moods. That in itself is a miracle. He is kind and patient, loving and genuine. He is an awesome Dad and nothing makes me happier than watching him with our children. Is he the person I thought he was when I married him? No. He is far beyond what I could have ever hoped for. He has changed me in ways I never expected.

I love you, Brent! Thank you for making the last ten years the best of my life. I can't wait to see what's next!!

Back To School

2009-07-08T07:30:00.005-05:00

I haven't updated for awhile.....So much has been going on. Most notably, though, is that Tyler went back to school today! They go for six weeks in the summer and we were so happy to get a spot at Mary Cariola, the same school he went to BC, (before cancer.) We were also very lucky to get the same teacher he had before. She is amazing and Tyler loves her!

I am both thrilled and terrified that he is at school this morning. Thrilled for him because he has missed it so much. He has also missed out on a great deal of therapy this past year. He loves being there, and the routine of it is so good for him.

Then the germ-a-phobe in me kicks in. We have had to be so careful this past year. We have avoided church, avoided the grocery store, avoided any possibility of him being in contact with other kids and germs. We have carried Clorox Wipes and Purell and made sure that we wipe everything down before he touches it. We have kept friends and family at bay, avoided play dates, kept Emmalee home from pre-school if she shows any sign of sniffling. We have been warned and we took those warnings to heart.

And now, here he is, with full permission to go back to school. I am trying not to be overwhelmed with concern, really I am. But the fact is, I do worry. I know I can't hold him back forever. I know that the doctors and medical professionals have his best interest at heart and would never let him return to school if they didn't feel it was absolutely safe. I know. But I'm his mom and I will worry none the less.

Tyler, however, was not one bit worried! He was thrilled! He was so excited to see the bus. His enthusiasum made me feel better. Only two and a half hours until he gets home. :)

Good Morning! It's time to go back to school!!

Headed to the bus with my bus driver.

All strapped in and ready to go.

And they're off!

Swine Flu

2009-06-22T09:59:00.000-05:00

We've had a Swine Flu scare around here. We're still waiting on Brent's test results. He has been miserable with all the classic Swine Flu symptoms. I feel pretty yucky myself though it hasn't hit me as hard as him. None of that really matters....all that matters is making sure Tyler doesn't get sick. His oncologist went ahead and started him on Tamiflu as a precaution and so far he is doing fine. We just pray that we started it soon enough.

Grab Your Tissues

2009-06-20T09:06:00.003-05:00

I saw this story online this morning and just couldn't help but cry. Grab some tissues before you read it!

Update

2009-06-18T13:12:00.002-05:00

It has been quite awhile since my last update. Here goes....

First and foremost, Tyler is doing well. We still have our challenges, especially during "roid rage." But, for the most part, we are holding steady. He continues to amaze us each day with his strength and perseverance. He had clinic last week and he did great. His counts have been pretty typical, no real alarm bells. We just pray each day that this will continue and that we can get through the next ten months without any major issues.

I stay very positive for the most part. But then I will hear about another child who has relapsed and it freaks me out. I try hard not to imagine what that would mean in our own lives. But cancer is not predictable. All we can do is live day to day, be thankful for each moment we get, pray and fight!

In other news.....Nathaniel had his rectal biopsies done and, thank goodness, it does not appear that he has Hirschsprung's disease. He did show ganglion cells in his tissue samples. This is both an answer to prayers and frustrating because we are back at the beginning. Don't get me wrong; I am VERY thankful that he does not have to have surgery or a colostomy. I just wish we had some more definate answers. However, we both trust his doctor and know that he will help us get through this. For now the plan is to increase his dose of Miralax and begin adding additional medications to help ease his constipation. If this doesn't help, we will explore some other options. Dr. Rossi thinks that because he was a micro-preemie, he may just need continued time to grow and he may grow out of this phase. We certainly hope that is the case.

Emmalee, Nathaniel and I got back from our trip last Monday. Please let apologize to all of our friends and family in Utah. We literally had less than 24 hours in Salt Lake. We drove straight from the airport to Elko when we arrived, drove straight through to Wyoming the next weekend and then spent less than 12 hours in the hotel before we flew home. I am so sad that we didn't get to see all of you! I guess this means we'll just have to come out again....or you'll have to come and visit us!!

We had a great time, minus the fact that the kids were sick for a few days. They both ended up with a nasty stomach virus and then poor Emmalee got a urinary tract infection. Not fun. As Emma said, "you're not apposed to get sick on cation." So true!

The rest of our trip was a lot of fun. My oldest niece graduated from high school. I'm still not sure if I believe it or not. Where did the time go? It was a blessing to be there and spend time with my family. I can't believe how much I missed them! It is very hard to live so far away.

We spent the second week of our trip in Wyoming, spending time with my dad and my grandma. My grandma has Alzheimer's and her memory is really starting to deteriorate. I am so thankful that I had time with her! She is one of the kindest, most loving people I have ever known. It was just incredible to be home with her and have that time together.

On our way back to the airport we stopped and spent time with my aunt, uncle and cousins. That was so much fun! I just wish we had more time together.

I think Emmalee's favorite parts of our trip were spending time with her cousins and following my dad around like a puppy. She had so much fun! She tells me every day how much she misses everyone and wishes we could see them. I agree!

Tyler did alright while I was gone. Brent said he asked for me quite often. I expected him to be thrilled to see me when we got back. He wasn't, at least not at first. It took him several hours to really pay attention to me and a couple of days for him to get over being mad at me. Poor kiddo. As much as I enjoyed my trip, I don't think I will ever be able to leave him for that long again. Thankfully he had his daddy home with him during the evenings and weekends and our amazing friend Hannah with him while Brent worked.

I have a million pictures to get posted but that will have to wait for another day. :)

All in all things are going well. Thank you to everyone for your love, prayers and support. It is because of you that we make it through this fight every day. We love you all!

Thank You!

2009-06-17T21:04:00.005-05:00

Emmalee has truly enjoyed her time in Nursery School this year. Tomorrow is the last day. I'm not sure which of us is sadder to see it end. Although, her reasons are probably different than mine. *smile*

I wanted to do something special for her teacher and the assistants. I really wanted to avoid the typical teacher gifts but I am painfully non-creative. Never fear, Google to the rescue! I found this super cute idea and it was very, very easy as well as affordable. We got each of them a small plant. Then I took a picture of Emmalee and went to the store to one of those photo machines. I added text and a border to the picture. The picture says "Thank you for helping me grow," along with her name and the date. Emmalee decorated the little pots to make them extra special. They ended up being around $3 each.

Thank goodness for Google!

Music Education

2009-06-16T13:48:00.003-05:00

There are many things in this world that I simply don't understand. One that always upsets me is when I hear that schools have had to cut music education programs due to lack of funds. I truly believe that music should be as fundamental as reading, writing, math, etc.

I have seen music work wonders in my own family, especially for Tyler. Watching him engage with his Dad while Brent plays the piano is incredible. Seeing him interact with his music therapists is amazing. It has opened up his level of communication and brings him out of his shell. I simply can't imagine him not being able to experience this in school....or any of my other children, for that matter.

Here's another example of the importance of music education in schools.

Be The Match!!

2009-06-10T10:32:00.001-05:00

From now until June 22nd you can sign up to be a bone marrow donor for FREE! By joining the registry you could potentially help save the life of someone with cancer. You can sign up through the mail. It's quick, easy and painless. Please take advantage of this great opportunity to sign up for FREE today!!!!

Emma-Isms

2009-05-20T10:14:00.002-05:00

"Mom, please stop talking to me like that. I can't stand it. Don't you even know me at all?"

"Don't worry about me, Momma. Just be worried about yourself."

While emptying the dishwasher......"I can hold sharp knives Mom. I'm really very asponsable."

My all time favorite...."You're a great Mom!"

Mark & Janet

2009-05-18T09:01:00.003-05:00

This may be a long shot but I feel compelled to post this on my blog. We have some amazing friends named Mark & Janet. They have been hoping to adopt for three years. Please, if you know anyone who may be interested in placing their child for adoption, forward this video to them. I can't think of anyone else who would be more kind, loving and committed to a child.

Never A Dull Moment

2009-05-15T10:48:00.002-05:00

Sometimes I wonder if good health will ever come back to our family. I try not to complain, really I do. But sometimes I think that I'm one big complaint factory. Here's the latest.

*Disclaimer - This first part is all about poop. Read at your own risk.

Since bringing Nathaniel home, we have struggled to get him to poop regularly. He never really has. We have tried Miralax, enemas, different formulas, prune juice, etc. Nothing seems to help. He generally poops about every two weeks or so....and when he does it is awful. He screams in pain. The stool comes out hard and huge. We just want to cry for him. His stomach is very distended. He looks like a little pregnant woman. It is so sad!

I have taken Nate to the doctor and they have told me that it isn't unusual for micro-preemies to have issues with pooping. Sometimes it just takes their little bodies longer to get everything working right. They gave us new things to try. We've tried to no avail.

As you know, Tyler has Hirschsprung's disease and he has a colostomy. Hirschsprung's is a genetic disease, meaning it is something you are born with. There is a section in the colon and intestine that is misshapen. Therefore, once the poop gets to that point, it can't go on. The misshapen section is missing the necessary cells, called ganglion cells. This prevents you from being able to poop, causing constant constipation. Most children are diagnosed with Hirschsprung's shortly after birth when they fail to pass the meconium. This is how it was for Tyler. They realized right away that he was sick and he had his colostomy placed very early in his little life.

Sometimes kids aren't diagnosed until they are older. I didn't realize this until just recently and didn't really think that Nate's problems could be Hirschsprung's. However, I started reading more about it and realized that some kids are diagnosed later on. I decided it was time to call Tyler's GI doctor and get Nate in to see him.

I took him in a couple of weeks ago and the first thing the Nurse Practitioner said was that she suspected Hirschsprung's. I was really hoping she was wrong and that maybe there was some other explanation. She did switch him to a soy based nutritional drink, just in case it was a milk protien allergy. She also ordered a host of tests, including a barium enema x-ray.

Nate had the x-ray last week and it showed the classic signs of Hirschsprung's. There is a section, just near the rectum, that is misshapen. The saddest part of the x-ray was seeing just how much poop is backed up into his intestine. The radiologist pointed it out to me and I could clearly see it, all the way up. It went almost all the way to his appendix. That made me cry. No wonder my poor baby is in so much pain and agony. No wonder his tummy is so big. After seeing that, I was almost hoping it was Hirschsprung's just so we would have an answer and be able to get him some relief!

The only sure way to diagnose Hirschsprung's is to do a rectal biopsy. They take tissue samples from the sections that are misshapen and if they are missing the ganglion cells, that is the certain diagnosis. Nate goes in on Tuesday for the biopsies. Once we have the results, we will know for sure and we can make a plan. He may have to have a colostomy and he may not. It just depends. Either way, we are ready and hoping that we can just get him some relief.

Okay, that's the end of the poop story. :)

As for the rest of our health issues....my foot is infected. Not sure what that is all about. I went in to have my stitches removed on Wednesday. For a few days before that I had felt kind of yucky. Running a slight fever, chills, extra tired, etc. I thought maybe I just had a cold or something. Apparently not. The incision site is infected and there is redness all around there as well as in the ankle and foot. My foot is swollen about three times the size it should be. Needless to say, she started me on some strong antibiotics. Hopefully that will knock it out. Honestly, this darned ankle is just one frustration after another.

The kids are sick. Again. Both Emma and Nate have yucky coughs, runny noses, and complaints of ear pain. They are headed to the doctor today. Tyler has a yucky nose but none of the other symptoms, thank goodness! We are on constant fever alert for him but so far he has been doing well.

I suppose that's it for my complaints today. :) I'll update as I know more about Nate. As always, your prayers are greatly appreciated!!

The Emmalee Tree

2009-05-13T09:30:00.002-05:00

We rent our house from the greatest guy! He is truly kind and we are so thankful for him and for our nice home. Also, Emma has him wrapped around her little finger. :)

Jason was here planting some new trees the other day. He is always very good about including Emmalee as his "helper". They planted this cute little tree and he snapped a picture of her. I'm curious to see who grows faster!!

Points To Ponder

2009-05-06T10:37:00.002-05:00

For as long as I can remember, my grandma has had a plaque hanging in her hallway. It reads, "Never Judge Another Indian Until You Have Walked A Mile In His Moccasins."

As a child, I never really understood what that meant. As an adult, I am beginning to comprehend.

It is so easy to look into the lives of others and question their actions, motives, etc. It is easy to look at others and think how easy they have it and wish to switch lives with them. It is easy to look at others and judge, one way or another, good or bad.

The hard part, at times, is loving people no matter what. Loving them and accepting them and lifting them when they're down.

I'm learning. I'm learning that even if you go through the exact same experience as someone else, you will handle it differently. You will get something different out of it. You will learn different lessons. You will apply those lessons to your own life and your own circumstances. Perhaps your choices are right and perhaps they are wrong. There are many times when you will go back and reevaluate, try again, learn something new. That's all part of life.

Brent and I have been through some of the most difficult experiences of our lives in the recent past. We have struggled. We have tried hard to understand the lessons that our trials are teaching us. We have tried to apply those lessons to our lives and allow them to strengthen us. Sometimes it is easy and sometimes it isn't.

Through it all, we have been lifted and loved by others. We have been strengthened and helped. We could not make it through our trials without the love and help we have been given. We have been sent Earthly angels and because of you, we have made it. We will never have the words to thank you. You are truly loved and appreciated.