not sure what to title this one...

So it's been a while...7 months actually. Though there have been short updates and progress reports on facebook, I haven't written on this blog since Brynne's 1st birthday.  I didn't really realize why I didn't write until June 10, when she turned 18 months.  It's because I couldn't.  It's not that my fingers couldn't type but that my brain and my heart couldn't get on the same page.

So why am I writing now? Because today is the start of what I pray is a new beginning. We are heading to California today to see Dr. Martin (pronounced Marteen) at Mattel Children's Hospital at UCLA.  Our appointment is at 8:00 tomorrow morning. My expectations of this trip are mixed and I'm truly not expecting a miracle cure but a new direction to research or perhaps a diagnosis would be nice.

We have come to realize whatever this is will be with Brynne for a while. We are ok with that.  We praise God everyday that she is a happy, smiling, wonderfully spirited sweetie and that she doesn't know anything is even wrong.  As she grows, we know that she will come to understand more but we also know God's plan will be revealed.

We have also been greatly blessed by the generosity of our community from "old" to young.  I'm not calling the Post Lion's Club old :) but they are older compared to the Cardinal's Little League team that held a car wash and raised money for Brynne. We also received passes from Southwest Airlines to make the trip to LA. I am truly overwhelmed with the outpouring of love and support from our community, surrounding areas, and of course our friends and family. Some day we will be able to pass on the blessings to others.

We are also so excited to be able to take Koda on this trip with us.  He has been a trooper for sure and is so excited to take this trip.  The other day he asked me to help him make a list.  "A list?" I asked. "Yes, of all the places I want to go." he said.  So we made the list...it has five items.
1. Sea World
2. Zoo
3. Beach
4. Barn (a real one, you know that's red and has animals in it, not a gray one with tractors in it :) )
5. On an airplane

And the list is hanging on our bulletin board.  Two weeks ago we went to Abilene for Megan & Travis' wedding and marked one thing off the list...the Zoo.  We had a blast! This week we will mark two more things off the list...the beach and the airplane.  Surely there's a red barn around here somewhere! and well maybe Sea World someday!!  It blessed my heart that he already has goals and such an imagination.

Well, its time to pack the car and get on the road. I ask that you pray with us for God's plan to be revealed and our attitudes to be loving, giving and at all times to exude the awesomeness of our Heavenly Father.

I end with our family moto:
Let all that I am praise the Lord; may I never forget the good things he does for me. He forgives all my sins and heals all my diseases. Psalm 103:2-3

Happy Birthday Brynne!

I meant to do this yesterday on her actual birthday, but it got to be a crazy day!

Wow! 1 whole year! Sometimes I think she should be way older than 1 and other times I can't believe it's already been a year. It's definitely been an interesting year, but we made it!

We still don't have an answer of what is causing whatever it is that is going on but we feel we have the right team of doctors that are not giving up! We've even added a new one this week and sent him a hair sample to see if something can be figured out through that avenue.

Brynne weighed 19 -9.5 on Monday! She's crawling everywhere and has been pulling up on furniture for a while now but in the last few days she has really been acting like she will walk soon. Her favorite person in the world is Koda and I am just thrilled that they love each other so much. Maybe it will continue throughout the teen years??!!

Brynne's birthday party is tomorrow and I know it sounds stupid but I'm really struggling with the fact that she can't eat cake. Seriously Maggie, how DUM is that? But she's here and she's still smiling so I'm going to focus on that. I've been looking for a sugar free cake to at least let her blow the candle out and if she happens to try to dig in it hopefully won't make her sick. I haven't quite convinced myself of that so we'll see what happens!

Craig, Brynne & I went shopping for her birthday yesterday and I came to a not so surprising conclusion...she has her daddy wrapped around her little finger! I'm going to have to watch those two in the future because if she just looked at something he tried to put it in the basket! Good thing I was there to control the spending! Not that she's not already spoiled by her daddy...

Well, Happy Birthday Brynne Brynne! We love you!

Look at the difference...

I didn't realize how thin Brynne used to be. I mean I was frustrated with her not being able to gain weight and wearing size 0-3 month clothes until she was over 8 months old but I really never realized how thin she looked until I took the picture below and compared it with the picture on our blog header....WOW! How awesome is that? She weighed 18-12 yesterday!!! Thank you Lord!

I stand in awe...

Saturday was the benefit for Brynne and I cannot tell you how blessed we are to have such wonderful friends, family and communities in our support system. Over 300 people were there, some of whom we didn't even know. They just heard or read about Brynne and they showed up. What a testament to God's unending faithfulness. I had a conversation with Luanne Terry about how shocked we were about the turn out and she said something I will never forget. She said, "Sometimes I wonder if God gets irritated with us when we are shocked at what He does. I mean, we ask Him for something, He does it, and then we're shocked? Doesn't He tell us that He's going to do it and yet we're still shocked?" There was definitely some silence after that one...what a humbling experience.

I was humbled in many more ways on Saturday...from people traveling from other cities and even other states to be there, to complete strangers taking the time to bless us, to a group of wonderful ladies taking their entire day to make sure every last baked good was sold! That's all in addition to the many people that cooked, cleaned, served and most importantly have prayed for Brynne (& the rest of us!)

This morning on the way to work I was listening to the radio and the hymn "I Stand Amazed" came on. I think it expresses exactly what has been on my heart for the last two days.

I stand amazed in the presence
of Jesus the Nazarene,
and wonder how he could love me,
a sinner, condemned, unclean.

How marvelous! How wonderful!
And my song shall ever be:
How marvelous! How wonderful
is my Savior's love for me!

Words cannot express our gratitude to all of you that have been such a blessing to us. We pray that God will continually bless you for being such a wonderful living example of His love and mercy.

Holy Cow...It's been three months!

I was just reading a few other blogs when I looked over and saw that my last update was 3 months ago. Wow! I mean what else have I been doing that I have avoided my blogging responsibilities :) Anyway, lots of things have been going on and it's on my weekend plan to get a full report done and posted by Monday. It's a plan...not a promise!

Brynne - 7 months

I finally had a few seconds to snap some shots yesterday...here are Brynne's 7 month pics...

From Brynne 7 months

From Brynne 7 months

From Brynne 7 months

She's way too smart!

Abby just sent me this picture on my phone...I would've never thought to hold a bottle with my feet!


And Daddy was pretty proud of these pics...

And here's my new favorite pic...