Tuesday Tyler Update

We are HOME!!! Oh happy day! Ty is doing well. His skin looks so much better and the infection is nearly gone. He does have to do IV antibiotics every eight hours for seven more days. The hard part will be waking up for the 2:30 a.m. dose. But, it is a small sacrifice if it means we can be home. He was so excited to get home and began tormenting Emma and Nate right away. :)
Thanks to everyone for your continued love and support!

Monday Tyler Update

We are still here. Looks like we'll be going home tomorrow. Ty has to go home with IV antibiotics and that takes awhile to get set up. At least we have a plan and we can start getting ready. Tyler is ready to GO, GO, GO! I can't blame him. I'll update tomorrow; hopefully from home!

Saturday Tyler Update

Tyler continues to do well although he is super bored. Poor kid...it's no fun being confined to the room. We found out today that the infection is in fact MRSA. Yuck! MRSA in combination with being neutropenic is not a good thing. But, at least he is there and getting the medications that he needs. Now that we know that it is MRSA, they can get the right treatment going. We're still hoping for discharge on Monday but we'll have to wait and see. This throws his chemo off for a while until we get things under control. He sure likes to keep us hopping!!

Enjoy your weekend....I'll update again soon.

Friday Tyler Update

Ty is doing well today. He is feisty and keeps yelling "COME IN" anytime someone knocks. Funny boy! We're confined to the room so he is bored and making mischeif.
Still aren't sure what the infection is. We won't be able to go home until Monday, at the earliest. So, we'll just hang out here this weekend and hope for Monday! Thanks to everyone for checking in and leaving comments. Keep the prayers coming!!

Thursday Tyler Update

Tyler is doing pretty well today. Actually, he is in really good spirits and being his wild self. :) He hasn't had a fever, thank goodness, and they are pumping him full of antibiotics. The culture results aren't back in yet as far as what type of infection he has in the skin. They are worried about MRSA since he has had that in the past. Hopefully we'll know more tomorrow. For now, we're just prayinig that we aren't there the entire weekend. Brent is staying with him tonight so I can hang out at home. I'll update again tomorrow when I know more.

And off to Strong we go......

All our attempts to stay away from Strong have failed. Tyler appears to have an infection in the skin around his G-Tube, likely some sort of staph. Still running a bit of a fever and they are worried that it could be turning into something nasty. So we'll likely be admitted. Boo! Please say a prayer that all will go well. Thanks!! I'll keep you all posted.

Emma-Isms

Here are the latest Emma-Isms.....

Emma was saying the blessing at lunch and this was her prayer..."Heavenly Father, please bless us to have a good lunch. Please help me to be a good girl so that I can get a motorcycle. And maybe Bo-Bo (Tyler) will be good and he can ride on it, but only if he is really good."

She also just asked me if I would help her sing the "Apple Pets." I couldn't figure out what she meant and she said, "you know, the ABC's." The alphabet!

The "F" Word

The "F" word in our house is fever. We are constantly on the watch for a fever with Tyler because it signals infection. If his fever hits 101, we are automatically eligible for a "vacation" at Hotel Strong, (aka Strong Memorial Hospital.)

Last night Tyler and I sat up most of the night together while I prayed his fever wouldn't hit the magic number. Thankfully he stayed around 99.8 throughout the night and he is down again this morning. Whew! All I can say is thank goodness for our forehead thermometer. That thing is a true lifesaver and well worth the money. 

Tyler is neutropenic right now, (very, very low white blood count,) so we're laying low and hanging out at home. Please say a little prayer that we can avoid a Strong "vacation." Seriously not our idea of a good time!

Happy Birthday, Sue!!

Hope your birthday was fabulous! We love you!!

Frustration

I called today to make Nate an appointment with a neurologist. The earliest appointment available is October 29!!! I almost cried. I asked her to put me on the cancellation list, and she said she will but the list is quite long. I am trying not to be too discouraged. Can you tell how well that's working??

Unexpected News

Well, I guess I should see this as good news but I am having a hard time saying that yet. Nate had his ABR test today. He is not deaf. Please don't misunderstand, I'm not sad about that, that is good news. However, he does not respond appropriately to sound which suggests something neurological is going on. That's where the bad news comes in. I'm not sure what to think at this point. He now needs to see a neurologist. The ABR showed 100% hearing in his left ear and 90 - 95% hearing in the right. In other words, the sound gets from his ears into his brain just fine. From there, who knows. Unfortunately the ABR can't tell us what happens to it after that. The doctor who performed the test did repeat some other tests as well and said that he can completely understand why we think he is deaf. He simply doesn't respond, even though he clearly hears. I am somewhat beside myself at this point. I am disappointed because we don't have a clear answer which is what I expected to get today. So, we'll move on from here and pray that the answers come quickly. Thanks to everyone for your thoughts and prayers.

Tomorrow's Nate's Big Day

Nate has his big hearing test tomorrow morning. I am nervous. I didn't expect to be, but I am. I guess it's just knowing that by this time tomorrow night, we will have confirmation that Nate is deaf. I know in my heart that he is, at least to some extent. By tomorrow night we'll know how much, if any, hearing he has. We'll have a better game plan. We'll have some ideas on what we need to do next. I think I'm nervous because even though in my heart I know that he is deaf, in my head I can still believe that we are wrong. After the test there will be no more denying it. I won't be able to pretend that I am imagining it. I know that knowledge is power and knowing what we're facing is good. But right now, there's a certain level of comfort in the not knowing.

Please say a little prayer that all will go as planned. I'll update tomorrow.

My Wickedly Awesome Husband

Anyone who knows Brent will tell you that he is one amazing guy. He is the love of my life, for sure. But more than that, he is kind and generous and even after almost nine years of marriage, he still manages to surprise me once in awhile.

Last week he called me and told me that I was forbidden from looking online at our checking account. I figured he had bought me something for my birthday or our anniversary. He just said he had a surprise for me. I love surprises. I kept wondering when I was going to get my surprise. Finally on Friday night he said that my surprise would be sometime over the weekend.

On Saturday morning he told me that I needed to be showered and ready to leave by 4:00 that afternoon. I kept asking for clues and he kept feeding me answers that I knew were total lies. It was fun to try and guess, though. He finally told me that he wasn't driving me but he was having a taxi pick me up, that I would be home after the kids went to bed and that he guaranteed I would love it. I was beside myself with anticipation. I had all sorts of scenarios running through my head.

Finally around 4:30 I noticed my friend Tasha drive up the driveway. That seemed strange since he told me a taxi was coming. I asked him why Tasha was here and he just smiled. Tasha came to the door and asked me if I was ready to go. Brent handed her a manila envelope and we were off. I had NO clue where we were headed but she got on the road and headed to Buffalo. I simply could not imagine what was planned. We had a great drive and it was fun to chat with her the whole way. She is awesome!

We got to Buffalo and started heading towards downtown. Suddenly I saw a huge billboard for Wicked. It hit me all at once that we were going to see it. Tasha hadn't seen it yet and I was dying to see it again ever since we went here. I didn't say anything to her but I was pretty certain. I did second guess myself for a minute because there is a bridge to Canada near downtown and Brent and Tasha kept teasing that I was going to need my passport so I thought perhaps we were actually going to Canada. I ended up being right, though, and we did go to see Wicked.

Tasha and I had a fun dinner and the production was just amazing. I really love this play and I am so happy I got to see it again. I think Tasha enjoyed it also and I'm glad we got a chance to spend some time together.

Thanks, honey, for always doing things to make me happy. You are truly incredible and I love you!!

Things That Will Eventually Embarrass Emmalee

Because my blog is essentially my journal, I have to record these here simply so I don't forget them.

Emmalee is a hoot. She is constantly popping off with some funny thing. Here are the most recent.

Mom: Emmalee, did you poop?

Emma: Nope

Mom: Honey, I think you pooped. You stink, I can smell you.

Emma: Nope, you can't smell me. Maybe it's your fingers!

____________________________________________________________

Dad: Oh no, I'm running late.

Emma: Let me see the watch on your wrist. Yep, you are about five minutes behind schedule.

______________________________________________________________

Emma: (Pointing to her chest) Mom, what are these?

Mom: They're your boobs.

Emma: Oh, well how long until they're big?

Mom: Not for a long time.

Emma: Hmmm, well how old do I have to be before I can buy a pink bra?

Mom: You have to be ten before you can get a bra.

Emma: OH MAN! That is A LOT of sleeps!

Tagged

4 things I was doing 10 years ago:

1. Working as a nanny for my sister's girls.

2. Getting ready to go to college for the first time. I was so excited!!

3. Trying to decide if I should serve a mission.

4. Hanging out with my friends.

4 things I was doing 5 years ago:

1. Hoping and praying every day for a baby.

2. Working as a reservation agent for JetBlue.

3. Hoping and praying every day for a baby. :)

4. Travelling quite a bit with Brent.

4 things I did yesterday:

1. Took a nap.

2. Went shopping with Emmalee and Nate. (Thanks for your help, Mike & Molly!)

3. Read more of my book, "The Forever Year."

4. Played with my sweet kids.

4 shows I stop for when flipping through channels:

1. Friends

2. Everybody Loves Raymond

3. Frasier

4. The Golden Girls, (I know, I know!)

4 Biggest Joys of My Life Right Now:

1. My incredible husband!

2. My awesome children.

3. Sleep

4. Reading

4 things that you might not know about me:

1. I love hard rock music from the 80's....Def Leppard, AC/DC, Whitesnake, etc.

2. I am allergic to eggplant, cantaloupe and watermelon.

3. I would rather scrub my toilet than dust. I think dusting is a waste of time.

4. I wanted to be an astronaut when I was little until the Space Shuttle blew up.

I guess I'm supposed to "tag" someone now. If you're reading this, consider yourself tagged.

Happy Independence Day!!

When I was growing up, this was by far my favorite holiday. I looked forward to it every year. It was the one time of year that all my cousins on my Dad's side were together. My Aunt and Uncle would come from Denver with their three kids and that was usually the only time we saw them. They would bring a HUGE tent and we would pitch it in my Grama's yard and camp out every night the whole time they were there. There are nine grandchildren on my Dad's side but usually it was just seven of us that would camp out. My sister was much older and the youngest was much younger. For the week or so that they were visiting, we were inseperable. We would play outside from the time we woke up until the sun was down. We would go on long walks and beg our parents to take us to Dairy Queen. We would usually take a day and go to the lake to go swimming. It really never mattered what we were doing, we just had a blast doing it.

On the Fourth of July we would have a huge barbeque at my Grandparent's house and all the neighbors and extended family would come. Bill & Dorothy Morey always brought a huge watermelon boat filled with fruit. My Grama would make rhubarb pie. If the weather didn't cooperate, we would clean out my Grandparent's garage and eat in there. We never let it dampen our spirits.

Because I grew up in Wyoming, we had the benefit of being able to set off our own fireworks. It was always a big game to see if we could find them and usually they would be hidden under my Grandparent's bed. We would sneak in and look at them and the anticipation would be just like Christmas. My Dad and uncles would be the ones to set them off. As soon as it was dark we'd get started. It still amazes me that there were only minor accidents each year! My favorite fireworks were rockets that shot up and then little plastic men would parachute out. The kids would race around and try and find them in the dark.

Now that I am much older and have children of my own, I can't help but reflect on how perfect that time was. My cousins are all over the country now, each with their own lives, most with their own families. I haven't even talked to most of them for the past several years. My Grampa has been gone for almost ten years and we don't really gather at my Grama's house anymore. As kids we thought those perfect days would last forever. Now I look back and realize just how quickly they went by.

One of my main goals as a Mom is to make lasting, happy memories for my kids. I want them to look back on certain traditions and hold them dear. I hope they don't grow up as quickly as we did!

Tyler's New Trick

Brent came into the living room the other night to find Tyler standing on top of the picnic table in order to get a better view of the TV. And, like any good Dad, before he gently helped him down, he grabbed the camera. Notice how Ty is up on tiptoes in the last pic? I think he may have been trying to kiss DeeDee Doodle! Such a monkey!!

Emmalee's First Hair-Do

Oh, how I have longed for this day! Those of you who know Emma know that she wasn't blessed with much hair at birth. It has always been very fine, very thin and so blonde that she looked almost bald. For three years I have longed for the day that I could put something cute in her hair. I have tried in the past but she just didn't have enough hair to keep clippies or pony tail holders in. Well, the day has finally come!!! She now has enough hair to do two little pony tails on top. And I must say, they are just too cute!! Now that we can do it, she asks me every morning to put her ponies in. She then stares at them in the mirror and proclaims just how adorable she is. I agree!!