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.