I don't know how you do it. A Response.

"I don't know how you do it."

We cannot tell you how many times we have heard those words in the last 3 1/2 years, especially the last 2 days. And over the last 3 1/2 years we have tried repeatedly to come up with a response that truly encompasses the real answer of "how we do it." Craig and I have discussed it several times and nothing really sounds right.

As we sit here, almost 24 hours after one of the scariest moments in our lives, I am again trying to figure out how to respond.

And it is simply...WE don't do it. HE does.

Who is HE? He is the Great Physician. He is the Wonderful Counselor. He is the Prince of Peace. He is the Almighty God, Creator of Heaven and Earth.

How does HE? If you really open your eyes, not just your physical eyes but the eyes of your heart, you can see how He does so many things. In our case, HE does this through massive things like facebook campaigns for prayer and small things like a hug from a friend. HE does this through family-like relationships with amazing doctors and nurses to a text from some unknown number on my phone. HE does this through the "right" devotional on the "right" day to an encouraging email from a far away friend I've never even met. HE does this by placing the loving, devoted, Christian doctors and nurses on our care team who not only say they are praying for us but we know actually do pray to an amazing hometown community who goes out of there way to support all of their citizens. HE does this through the prayers of sweet children to the sighting of a t-shirt with your name on it on someone you don't even know & floods of people you do know. HE does this by miraculously pulling the infection from a person's body to keeping a tiny germ away that we don't even know about. HE does this by instantly answering a prayer for peace and understanding to sometimes even physical, "I can see this with my own eyes" signs of a miracle. HE does this, WE do not.

So how do WE keep SMILES on our faces? If the last paragraph isn't enough, there's one more reason and its very simple...we choose too. Yes, it is a choice. A daily choice. Are there days when we don't want to get out of bed because it all seems too much? YES. Do we sometimes ask why? Most definitely. Are hospital couches our favorite places to sleep? Uh, that'd be a big negatory. Is it easy to repeat the answers to the 900 questions of the admit form in every single doctor's office and everytime a new doctor, nurse, nutritionist, lab tech, etc. comes on duty? No. Do we like to see the tears in our other child's face and know that he will be in, while very capable, someone else's care for an undetermined amount of time? Of course, not. But in all of that we, as a family, know that we only have one life on this earth and our purpose is not to feel sorry for ourselves and make all those around us miserable but to share love and happiness with everyone we come in contact with on a daily basis. But most of all, our purpose is to glorify God in EVERYTHING we do.

Are we perfect? Not even close. There are many things that we struggle with and I personally want to offer a public apology to those I have hurt when I forgot to make the choice to SMILE on a day where things were overwhelming. I know I have spoken unkind words, honestly, without meaning to most of the time. And in those times I did mean to, I hope I have come and personally and quietly apologized. If not, I will and please confront me if I haven't.

Have we always felt this way? Um, well I'll spare you the details but the short answer is no. While personally I have had a relationship with Jesus Christ since I was 8 years old, there have been times I knew He was there, I just tried to do things on my own and only went to Him when I "needed" something. He doesn't always have to use a dramatic, drastic situation to remind us Who is in control but to some of us that are slightly more stubborn than the rest, He can choose to.

(Stop: Do I think that He CAUSED Brynne to have a rare genetic disorder that almost no medical professional has ever heard of  just to bring us closer to Him? No, BUT I do know that He promises ALL things work together for good for those who love Him and are called according to His purpose. And boy, do we know He has an amazing plan in all of this.)

All of this is to really to say again, if you ever wonder "how we do it?" The true answer is...

We don't, HE does.

Yes, it may sound like an overused quote you might find on pinterest or something you might hear from a pulpit. But we pray that through all of this YOU see HIM not us. For we are nothing without HIM. And I pray that some where, some how He has used us to make a difference in the life of just one person.

So...make the choice...everyday...to open your eyes and see how & what HE does for you. HE has His hand in every single moment and situation of every single day.

Make the choice...everyday...to see the good He has done before you look for the bad that all us silly humans have caused.

Make the choice...everyday...to look for ways you can give to others instead of how you can help yourself.

Make the choice...everyday...to let HIM do it and give Him the glory for it.

Make the choice...everyday...to SMILE.

because you never know who's life He'll use you to impact.

1 Peter 4:10

You've got questions? We've got...well, a few answers.

Note: Go grab a cup of coffee or something...this is a long one :)

"Mommy, I awate!" This morning I cherised those words more than ever. March 1, 2012. It's not her birthday, it's not my birthday or anyone else's that I can think of right now. It's not a national holiday. It's the day, that 3 years ago we took our sweet, barely 6 lbs, 10 week old daughter to the hospital for the first time because she chouldn't keep anything down or in. The same day we began a journey that has taken us down many roads we still look back and think "WOW! Thank you Lord for getting us to the next turn. and the next, and the next."

I'll never forget calling my parents in the middle of the night to come get Koda. I'll never forget Craig telling me earlier in the night that he thought we should go to the ER and me hoping and praying that we didn't really need to but a little while later it was all too clear. I will also never forget when we got to the hospital, the looks on the faces of the nurses when they saw my Brynne. One of those nurses, I have known since childhood. I've told her a million times how thankful I am that she was there. God is amazing in placing the right people in the right place at the right time. Noone told us then, but a few months later one of our doctors told us how close we were to losing her that day. In our hearts, we knew.

Many of you already know of the 40 something times we've visited our vacation home (aka Covenant Children's Hospital) and the multiple surgeries, procedures, blood transfusions, etc. that have happened through the last 3 years and we are so very grateful for everyone of you that has traveled with us on this journey, especially those in prayer.

Since March 1, 2009, there have been multitudes of questions and as the title of this post suggests...we have a few answers. In the world of rare diseases and syndromes, Brynne is one of the "lucky" ones. She has a diagnosis. My heart aches everytime I read a facebook or blog post or hear of another child/family that is trying to find a diagnosis. Craig and I can attest to the feelings of inadequacy, guilt, and utter hopelessness as you grasp at every word a doctor says it MIGHT be this or it MIGHT be that or we'll run this test or that test and they keep coming back with "Well, it's not what we thought it was, but we'll keep trying." I can't tell you the peace we have just knowing what we are dealing with. Thank you Lord for giving us the name.

Yesterday was Rare Disease Day and we asked our friends and family to wear jeans (for genes) and zebra print (for rare & different) in support of Brynne and all those living with a rare or undiagnosed diseases. It is an understatement to say that we are overwhelmed at the response. We are so grateful for those who support us everyday. This little town of Post (& West Texas) has the biggest heart...not just for us but for anyone who calls this place HOME. Not everyone took pictures but we know of people of all ages and walks of life that wore their genes and zebra print (or Brynne's Smiles shirts) yesterday from Post Elementary to Snyder 4th Grade (& Borden County, Lubbock, Amarillo, etc), from game wardens to therapists, from family & friends to people that have never met Brynne.

"Thank you" doesn't seem like enough to say. Someone needs to come up with words that encompass the thankfulness we have in our hearts.

Yesterday also brought up something else...a lot of questions. So I thought I would answer the questions we get most often. We're always happy to answer any questions you have...that is, if we actually have the answer. Earlier this month, was Feeding Tube Awareness Week. Brynne and I went to Koda's Kindergarten class and did a presentation. They had some great questions and we loved answering them!

Ok...here are the questions and the answers we have.

1. What's the diagnosis? Trichohepatoenteric Syndrome or THES
2. What does that mean? Basically, her body doesn't know what to do with food. It also involves her liver, heart, and immune system.
3. Can she eat? Yes, she can eat whatever (well, except pineapple which we recently discovered she is allergic to) and however much she wants to, we just don't always know how many diapers we'll have after she eats :) Her favorites are "lello" chips (tortilla chips) and guacamole, ranch dip, strawberries, red bell peppers, and cheese. She's not really in to sweets but she's getting better.
4. How'd she get THES? She was born with it. It is literally in her genes. Gene TTC37 to be exact. Craig and I both have a mutation in this gene. Our mutations are different (which proves we aren't related) but we both gave the mutated copy to Brynne. I actually gave the mutated copy to Koda too but Craig's good gene overrrides it.
5. Were there any indications/complications during pregnancy? Nope, not a single one. But it wouldn't have mattered if we had known anyway...ALL children are a blessing from God.
6. Will she grow out of it? No.
7. How many other people have THES? According to a paper written in 2010, THES is estimated to affect 1 in every 500,000 live births. The study had only 12 participants. As far as we know, there aren't many more than those 12 and we're pretty sure Brynne is currently the only one in the US.
8. What is the prognosis? We believe it is just like anyone else with or without a disease, it is however long God decides.
9. Will her hair grow? Well, we sure hope so. The "crazy hair", as we call it, is consistent with THES and has become one of her trademarks!
10. Is she limited to where she can go/what she can do? We'd like to say no, but honestly because of her immune deficiency she does not go to daycare. We try to keep her away from those that have anything contagious. Also, because of her "tubes" & "buttons", she is limited sometimes on her ability to do things like get wet or run and play whenever she wants. We've arranged her feeding schedules to be at night while she is sleeping so the limits are as little as possible.
11. What are those tubes? Well, she has a port and a g-button. Both are used for feeding and medicine. The port is like a permanent IV and she gets TPN (her food) everyday for 14 hours but we can "unhook" the part that you can see so she can take a bath, etc. The g-button allows us to put things directly in her stomach like formula and especially those things that are hard for her to swallow like medicine.
12. Has she experienced any developmental delays? The only delay she has experienced is in her ability to swallow food which she is in therapy for and has made great progress over the last four months. She did walk, talk, etc a little later than when Koda did but all children are different.
13. What made you think something was wrong? When Brynne was four days old, she started vomiting. At first, we thought nothing of it but as it continued and the number of diapers we had to change increased, as well as the fact that she wouldn't gain weight were all indications that something was up.
14. What is her biggest struggle? To gain weight. (don't we wish we all had the problem :) ) With her body not wanting to absorb the nutrients like the rest of us do, she is dependent on TPN that goes directly in to her blood stream and provides nearly all of her nutritional needs.

Ok, if you've made it this far you deserve some sort of award! I hope this sheds a little light on our sweet Brynne Brynne and what she deals with everyday (and she does it with a SMILE on her face). If you have any other questions, please feel free to ask.

Again, I cannot express the deep gratitude we have for each one of you that has supported us along this journey. Our God has truly blessed us in so many ways and we praise Him daily for allowing us this amazing opportunity to share His faithfulness.

Honestly

I don't know what makes me want to blog or not blog. I think sometimes there's so much going on that I forget to, sometimes I don't know how to put it into written words and other times I struggle with how much is too much. Am I the only one that struggles with this? Honestly?

While the menu on the right shows only 4 posts for 2011, you know there's been alot more than 4 things going on in our life. I love reading other blogs but I often wonder "Who in the world would want to read about us?" Honestly?

My desire is for this blog to be uplifting and encouraging.  But more importantly, when I share I want it to glorify God in every word. There are sometimes when I want to blog but don't feel it can be all of those things...uplifting, encouraging and glorifying to God and HONEST at the same time. I'm not saying that I lie about anything, but sometimes I might omit a feeling or statement that could be construed as a negative. Call it Pollyanna syndrome or whatever but I was always taught to find the good in every situation before looking for the bad and I honestly TRY to do that everyday.

I read a blog this morning from a mother who has a child with similar issues to Brynne. She was so open and honest about how she felt and what was going on with him. It wasn't a negative post...just honest. It was so encouraging to me to read from her heart. How she actually put it into words I'll never know, but I felt a kinship and connection with her. I felt able to relate. I appreciate her...honestly.

So what does all of this mean?

Big changes? No. Will I post more often? Can't promise anything :) Will I share every detail? No. (& I can guarantee that)

BUT, after reading that mother's post today I felt God telling me I needed to be more honest because maybe, just maybe, what is posted might be encouraging and uplifting to someone else and in that I will be glorifying Him.

So there it is...honestly.

The big 6!

Oh Kodabug! Happy 6th Birthday sweet boy!

I thought I would be able to type pages and pages about this day but I find myself speechless...in awe, of the amazing young man you have already become. You are the comedian, the "ham", the encourager, the friend, the great reader, the shoe tier (a BIG deal!), the athlete, the hugger, the constant helper, and the most amazing big brother. Oh how I love you!

and I thank God for you everyday!

Catch up...

Here's an update in pictures...

Taking after her momma!

with Aunt Cawey at Casey's graduation...

 so proud of their Uncle Casey...



 Supposed to be a picture of the Bigham men...Brynne didn't want to leave her Biggie!



Quick snapshot on the sidewalk after Casey's graduation...

Koda had a hard time "versusing" his friend Hayden during his first T-ball game

Koda's 1st at bat = Koda's 1st home run!

Datch & his biggest fan!

Craig was really excited about pictures as we had a blast at Aunt Christy & Uncle Zach's for Easter...

Here we go....

Payce, look...there's some over there...

Even Knox got in on the action with a little help from his daddy...

Cutest little bunny!

CHHHHEEEEEEEEEEESSSSSSSSSEEEEEEEEEE!

1st T-ball practice

Game faces on!

Trooper McDonald Golf Tournament tee off!

Sports, phonics & gammaglobulin...

Ok, so are you wondering how those are related? Well, those are the new things in our life. It's Koda's first year for "organized" sports. We started with in-door soccer in Lubbock and even though I know it is organized...watching a bunch of 5-6 year olds running around chasing one soccer ball looks anything BUT organized. But Kodaloves it and I definitely see a lot more of his daddy showing up...the desire to win, the frustration of not and the definite love of anything called a "sport"! Next, is t-ball... Craig is not only coaching Koda's team this year but he is also in charge of the t-ball program.  He loves it (& is awesome at it)! and I am so excited he is finding his place here in Post. I've had fun helping him organize, proofread, schedule and even name the teams...our team is the "Lugnuts"!

So where does phonics fit in? Koda is READING and doing so well. It is one of my favorite times of the day when we get to sit down and listen to him read and with such EXPRESSION! and to hear him practice the same phonics rules as I learned...and Brynne is picking up on some of it. Koda even reads her favorite book "Pete the Cat" (which, if you haven't read it...you need to). I've videoed it a couple of times but every time we've had some sort of interruption. I'll get it done and be sure to share it. I figured I better get their love for each other on video as proof to show them when they're teenagers!

The gammaglobulin?.I'm sure I've misspelled it but today we got a slight glimmer of hope in the mystery that is our Brynne Brynne. We have been doing some immunology testing and today we got a phone call that one of the tests actually came back not "normal". My hear jumped! Ok, I know you are thinking....WHAT? You were happy about this? YES! With pretty much every test over the last two years not really showing ANYthing close to an answer...we might actually have something to focus on. PRAISE GOD! We still don't have an actual name but we do know that at least part of what Brynne has been dealing with is an IDD (Immune Deficiency Disorder). She will start undergoing a monthly treatment to, in non-medical words that I can't pronounce, basically give her immune system a huge boost. We are so excited to have a glimmer of hope of a name of something. We have been repeatedly reminded that the doctor's believe this is only part of what's going on in her body...but we'll take it! Thank you Lord for your continued faithfulness!

In other news, we are completely and totally excited about what God is going to do through Brynne's Smiles. You can read more about it at http://www.brynnessmiles.org/.

Thank you for keeping up with us...we love having you as part of our lives!

Trooper McDonald Memorial Race

Today was an awesome event...the Trooper McDonald Memorial Race! We got the amazing opportunity to celebrate the life of our good friend Jonathan McDonald and show Laura and Kacyn how much we love them. We are humbled by the fact that Laura chose to donate the proceeds of the race to Brynne.

If you don't know Laura or didn't have the chance to know Jon, you are missing out on some amazing people. Alison & Stuart Blalock are two other people we are blessed to know and are looking forward to getting to know better.  Jon was Stuart's best friend and he and Alison organized the race.  It was AMAZING! There are over 275 people there to run a 5k or walk 1 mile. Brynne & I walked the mile and Craig and KODA ran the 5k. I'm so proud of my boys!

We are so blessed by the outpouring of love and support and some day we WILL pay it forward.

                                              

Jon, we miss you! And I know you are proud of Laura and the amazing woman, mother and friend that she is.

I didn't have the chance to take as many pictures as I would've liked but there were cameras everywhere so I'm sure we'll get some awesome shots to remember this amazing day.

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

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