To Emmalee's Future Children

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

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?

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

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

I'll bet....

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

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!

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

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.

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

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

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!!

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

Bring it on.....

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

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.