Our Rainbow

Sunday we went to the corn maze after an exciting session of family pictures! It was weird being on the other side of the camera but Jamie of JamieLynne Photography did an awesome job of entertaining us. (You should see her dance! Love you Jamie!) Biggie & Bma (Craig's parents) accompanied us to the maze.

On the way to the maze we saw an awesome rainbow and Koda said "Momma, look how beautiful God's promise to never flood the earth again is, but you know what? You can't have a rainbow without the rain!"

How true is that?

Brynne & her spaghetti

Ok, why is it that I only post every 3-6 months?  I have no idea really, but tonight at dinner was a 1st for Brynne...SPAGHETTI! Not that she really "eats" it but she trys and she really wants to do everything Koda does. So tonight she had her first experience with spaghetti.  I couldn't help but share!

California

Well, we're back! (ok, yes, we've been back over a week and I'm just now getting to this!) Before going on this trip we were unsure of what would actually happen but hoped even though we were going for Brynne's appointment we would have a little time to at least go to the beach. When the appointment was scheduled, we were told Brynne might have to spend some time in the hospital so to plan to be there several days. Well, God truly blessed us with not only a great appointment with Dr. Martin but with several days of rest and fun!      WARNING: I didn't plan this to be a long post but it turned out to be that way...feel free to skip to the end if needed!

Here's what our schedule looked like:

Wednesday: We had a great flight to LA on Southwest Airlines! We were blessed by someone we don't even know with 4 tickets to/from California. WOW! Isn't our God awesome? We anticipated having problems with taking liquid, syringes, etc on the plane but Southwest had already been notified about it and there was no problem at all. On the flight Brynne loved looking out the window and kept saying "You see that?' "You see that?" pointing at everything. Koda got his "wings" and was allowed to see the cockpit and even sit in the captain's chair. Talk about excited! After landing in LA, we got a rental car and a GPS!! and headed to the hotel in Santa Monica. Our hotel was about 5 blocks from the ocean and as soon as we dropped the bags off in the room we headed to the beach.  (If you haven't ever used priceline.com, you should! we got a great hotel for a really good price...thanks abby for the idea!) Santa Monica pier was great!  Although a little breezy, I enjoyed watching Koda & Craig enjoy the beach for the first time. Brynne wasn't too sure about the sand but she had a blast watching Koda. We enjoyed fresh seafood and walking around the pier.  Koda never quit smiling and told me "Mom, this is the best day of my ENTIRE life!" 

Thursday: Thank you Lord for the GPS! Well, sort of :) As we headed to UCLA for our 8 am appointment we couldn't quite get the thing to work but we finally did and got to the address listed in plenty of time for the appointment. Or so we thought!  After walking in a maze of hospital halls for what seemed like miles we finally figured out the GPS had taken us about 3 blocks from where we should have been.  Oh well!  After a nice walk, we ended up at the right place, right time and Dr. Martin (pronounce Marteen) was waiting on us.  No long wait, no crazy paperwork, we walked right in... and no rush to see the next patient. Dr. Martin has patients world wide and his specialty is rare pediatric diarrheal disorders so he doesn't have a ton of patients. He spent 2 1/2 hours with us before his conference call with the National Institute of Health (NIH) and then after his conference call spent another 1 1/2 with us.  During his conference call we went to have several tests done. After the appointment he even took us to see the lab where they will do all the further testing.  A treat for us & the lab technicians because they never get to see the patients they are researching and trying to find a diagnosis and possibly a cure.  He even walked us back to our car (good thing, cause we probably wouldn't have been able to find it!) I had spoken to Dr. Martin on the phone & by email several times but meeting him in person was great because he took the time to explain things in terms we could understand, answer our 1,000,001 questions, and was great with Brynne & Koda.  

After the appointment we had time to head back to the beach. I took them down the coast a few miles south to Venice beach.  So relaxing and fun! Craig was like a little kid in the waves and Koda couldn't get enough of the sand and water.  Brynne and I hung out on the towel and enjoyed the sun! For four hours we did nothing but play...it was awesome!

Friday & Saturday: We were also blessed with the opportunity to go to Disneyland & California Adventure.  What fun!!! We met Pluto, Mickey, & Sully and saw Woody and several others.  Brynne absolutely loved seeing Mickey & Minnie and pointed them out everywhere we went. The rides were great, the weather was nice, the time together was amazing...and we were worn out! Again Koda never stopped smiling and Brynne did really well the 1st day.  The 2nd day was a bit much for her but she was a trooper and we enjoyed some Mom & Brynne time while Koda & Craig finished their list of rides. The only mishap was the spilling of bubbles on my camera which caused me to temporarily stop breathing :)! (Fortunately after three days of drying out it seems to be working perfectly now!)

Sunday: We were all worn out so we slept late and rested for a while. By noon, Koda was ready to get out of the room so we headed out to the Aquarium of the Pacific in Long Beach. It was packed but still a lot of fun. We got to pet sharks, stingrays and starfish! Koda also enjoyed learning  how to be a vet. So much fun!

Monday: Koda begged to go back the beach and since our flight wasn't until late afternoon we spent all morning at the beach building a sandcastle and enjoying the fog & mist. Again, so much fun! We headed to the airport early to make sure we would have time to handle any issues with Brynne's medical equipment getting through security.  It of course took longer than the Lubbock airport but no major issues.  The flight home was uneventful and the feeling of our own bed was definitely nice!

So....what did we learn? Was it worth going all that way? Yes. Of course the unexpected vacation was absolutely amazing but most of all we got some answers. Not necessarily all the answers we were hoping for but none the less they were answers. After looking at all of her medical records over the last 18 months and then actually seeing her (& her hair!) Dr. Martin gave us a diagnosis of a genetic disorder which will have lifelong effects. Because her symptoms and characteristics don't match any known disorder she will be part of a research grant from the NIH to use a new DNA technology. He was hopeful because of her development being on track and was amazed at how she happy and cheerful she is. With some minor modifications, we'll carry on with what is working and feel blessed everyday that God has blessed us with a wonderfully happy, very special Brynne and her amazing big brother who couldn't love her more! Someday we may even have a Brynne's Syndrome in the books!

Thank you for all of your support and prayers. We know that God has an amazing purpose for all of this and we know in His time He will reveal it to us!

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