Tomorrow is a big day, Levi will have his 5^th or 6^th? I can’t remember! He will have another bronchoscope. For the past 2 weeks I’ve been trying very hard not to lose my focus. To not let my emotions rule my life. To not let anything get in the way of my hope, my faith. Boy has it been a battle! I’ve been reminding myself to meditate on the Word of God, the only thing that cannot be changed no matter what.

GOD is in control…. GOD IS IN CONTROL!!! His ways have not made much sense to me these past two and a half years. But they are good, they are perfect. And we are trusting in HIM. No matter what they see tomorrow we are trusting in God’s goodness and His perfect plan for our lives. For our baby boy's life.

Levi and Jesse are doing so good. They are growing and changing every day, they talk and sign non-stop! They are constantly running and jumping and getting scrapped knees… they are such a joy! Levi has continued to do so, so well with the change in diet. He hasn’t required any medicine and is eating like never before. God is so good… we are so thankful for this new Doctor.

So, tomorrow we are praying that the Doctors will see what we have been seeing. We are praying for his airway to be healed. We have never gotten a good report from this procedure. They have always seen the exact same thing every time they have checked, but we are praying that tomorrow will be totally different.

We are so thankful for what God has already done and the healing that has already started. Every time Levi willingly opens his mouth to eat, we praise God… every time we hear his precious voice, we feel like we have just witnessed a miracle. Thank you all so much for your prayers…

We decided to try something different… something new for us since the boys were born, and something that we hadn’t even seen as an option.
To start, let me just say that we have felt like we’ve been going around in circles with Levi’s airway problems. EVERY single time that he has been checked, since he was three months old, they have seen NO change at all in his airway. 1-2 mm in diameter, irritated and inflamed airway. That sounds so painful! And for a two year old to live like that? Not okay!
So, a very dear friend of ours was visiting TN for a few weeks and got to spend a few days with us. It was a God sent thing! She and her family lived on the ranch with us for several years, they were in charge of the boys children’s home part of the ministry. Part of the reason that they had to leave was that their daughter had a lot of health issues. Mostly related to allergies. She WAS allergic to everything. So they tried something completely different. They were scared about this, they were uncomfortable and nervous… but they tried it because nothing had worked for her up till then. They went to a ‘natural’ healer person(I‘m not sure what her title is exactly). This lady in Missouri is actually a Christian. After seeing Chelsea, my friend, and remembering how her health used to be, and the pain she used to be in (at 12 years old sometimes she couldn‘t even get out of bed because of her pain!) I was ready to load the boys up and start driving to see this lady ,(plus I really wanted to go anyway to see my friends:)
After talking to Brian, we decided to look around a little closer than 9 hours away. I was a little upset about this because I knew that this particular lady had really helped my friends and I trusted her because of it. I couldn’t even imagine going to someone totally random and assuming they weren’t just nuts. But it did make sense to try a little closer first and I did talk on the phone with the lady that my friend saw and kinda new a little of what I needed to look for.
SO, I called another friend to ask for help and see if she knew anyone that she could recommend. She didn’t but said she would start looking. And she did… and she found someone. We met with her a week and a half ago. And let me just say, I feel enlightened. Everything she said made perfect sense. Brian and I were completely blown away by it all. I feel hopeful and like we can finally move foreword in getting Levi’s airway healthy. We are sooooo thankful. We thank God for you all and your prayers, we ask that you would continue to pray for God to give us wisdom and discernment. We have stepped outside our comfort zone (what had become our comfort zone) and feel like we are perusing something better. Nothing has worked up till now so we feel we have nothing to lose.
What the Doctor was saying is that it’s all about giving Levi the right nutrients and taking away the things that are harming him. Nothing new for me personally, since my mom loves everything that is natural and healthy. For some reason we have always felt like, when it comes to the boys, Doctors know best. Things that my family would have NEVER been okay with, they have all felt like it was the only option. And I’m not saying that the Doctors don’t know best. Without them and their knowledge, our babies would not be here today. God has used them in a mighty way and continues to do so. But for now, we feel like this is a good option, a better one...
We love you all so much, I have felt so encouraged and up lifted by your words and prayers. Thank you. Thank you all so much for walking this walk with us. We are so grateful for it.

Friday’s meeting… it was hard, most of you have realized that by now! On Saturday morning I wrote an update in Spanish and was planning on finishing that one and then writing it in English. I wasn’t counting on how hard it was going to be to re-live all that the doctors had said, so I could only do that one. I was a mess the rest of the day. Really, I allowed myself to mourn and grieve for two days. After that, Brian and I had a really good talk and Church was amazing (convicting/encouraging). So, I think I can now write this update without ‘losing’ it all over again.

Right now, the main goal is to figure out what Levi is allergic to. It is allergies, and not reflux that has caused the damage in his esophagus. We are working on getting an appointment for him. Once we figure out what it is he is alergic to and start treating him for it, he will need to be rechecked in the OR. Unfortunately. The doctor said that this may be a very difficult process because Levi’s allergies are only affecting his esophagus and nothing else. The only way to know if he’s getting better is to look inside him. He said that it’s very possible that we will need to remove the 6 most common food allergens from his diet, check him to see if he’s improved and then add one at a time, checking him again every time we add one of the foods. The reason why we would possibly need to do this is because it may not show in tests what he’s allergic to. If it weren’t for his trache, we would probably never even know he had food allergies. We will take one step at a time…

The harder news came before all this. The ENT(ear, nose and throat) described what the actual surgery was going to be like, the one to remove the damaged part of the trachea. First of all, he will not, and can not do the surgery until Levi’s allergies are 110% under control. So when he is scoped and there is no irritation whatsoever, we will wait 2 more months, and then try it. We are totally fine with this and understand it perfectly well.

Once he does do this big surgery, the chances of Levi going through it with no problems are 1 in 100. (Steph, this is only because of the particular surgery that Levi will require. Most trache kids don’t need this major one). The doctor told us to expect it to be like it was in the beginning, when the boys were first born, many ups and downs. Only it could last years. He said that it could be continuous visits to the OR, weeks of being sedated and many, many more scopes. He said it would be a very long and hard process.

When I think of this, two things come to mind. 1) The pain, sadness and sorrow I felt this last time he has checked. Him waking up from this last procedure was torturous for me. I don’t know why, but it’s getting harder and harder to see him go through this. I guess it’s because he was so alive, happy and joyful on his way to the hospital, and once we got there he was just amazing! He doesn’t understand why he wakes up feeling so miserable. This was only a small procedure to check him…

2) I re-lived the NICU days. Although there were only 113 days, it feels like I only existed for moments before those days, and since then time has gone by flying! But those days were eternal, death was at our door, waiting…

We were there, at the hospital, for less than 4 months… those months almost destroyed my life, my marriage…

Putting the two together, and then realizing that it could last years? I wept, I grieved, I re-lived the pain, the sorrow. I KNOW that I can not survive this process. I don’t want to, I don’t want to have to be strong enough. I do not want to endure. I want to give up. I don’t want to have to find strength… I want to give up… But I won’t.

Yesterday at Church, I felt like God was explaining to me that HE IS preparing us for the battle that lies ahead. And that HE WILL see us through it. I feel like we will be entering the valley of the shadow of death all over again. Only this time it will be longer, harder. But WE WILL continue walking foreward, maybe sometimes crawling. And though we fall 100 times, we will stand back up.

This last year has been a year of healing, for me personally, for our marriage…

The boys birth caught us completely of guard, and like I said before, it almost destroyed us. But this time we are being prepared, because we are going to need it in order to survive and shine all the way through it…

I thank God for all those that He has put in our lives to walk and pray us through this. We love you…

Skarlett

Jesse and Levi LOVE this girl!

Update on Levi

Okay, first of all I would like to thank you all for your faithful prayers and uplifting words of encouragement. It truly is an amazing and comforting feeling to know that so many people are with us on this… still, even after two+ years.
Levi was so amazing through this entire procedure. He was all smiles, friendly and not afraid. We feel so very proud of him! We were waiting for 3 ½ hours before they took him. He hadn’t had anything to eat or drink since the night before, people were constantly coming into the room asking questions and explaining their part in the procedure. And, oh my gosh! I think that when it was over 10 people had to come and talk to us! But like I said before, he had smiles for every single one of them! It was very sweet and just what I needed.
The official report on Levi is… that there really isn’t one just yet! The gastro-Doctor took samplings of his esophagus to test for allergies and the pulmonary-Doctor took samplings from his lungs to check for possibly dangerous bacteria.
What we found out yesterday was:
1. His lungs look good, we need to wait and see if anything grows in the culture that they are doing, but so far this is not going to be a problem and will not slow the process down for the surgery to remove the trach tube.
2. The ENT said that there is still a lot of irritation and inflammation in his airway and that the narrowing of his airway is very significant, we already knew that. It’s still only about 2 mm in diameter. We did find out that this narrowing is 1 ½ cm deep. Not too good. But, it doesn’t really change that much. It’s pretty much the same surgery that we already knew he would need.
3. His reflux is still pretty bad. There are signs of damage in his esophagus and there is still a lot of irritation from it. Not good. What’s even worse is that it may be allergies. The reason that this would be really bad is that Levi has no outward sign of food allergies. Sometimes it is impossible to find out what one is allergic to and since the only sign of it is inside him, it makes it pretty hard to see if it’s getting better. He said that sometimes they take the 6 most common food allergies and then add them back one at a time to see which one it is. BUT, again, it’s inside his esophagus that we would need to see to know is something makes it worse or better. Anyway, we will have to wait on those tests to try to figure out a plan of action.
So, the report wasn’t what we hoped for. And although I am not trying to sound pessimistic, we were not surprised. Really we will have to have to wait for the results to come back and for our appointment on the 12th of February where we will discuss the plan of action.
Nothing has really changed, God is still in control, He has a plan, a perfect one. His timing is perfect, not ours but PERFECT and we are okay with that.
So, we do ask you to continue to pray for healing and restoration… I got to admit, it’s getting harder and harder to watch Levi wake up after being put under. He is such a happy boy and so sweet, it just really kills me for him to have to go through these things. I thought it was the hardest when he was tiny, but now that he kinda knows what’s going on, but not really, it’s even harder! He doesn’t understand why we take him to a hospital when he feels great and then he wakes up hurting and confused. This time he had a pH probe put in his nose(it was a little tube that went half way into his esophagus and was connected to a small computerized machine). He had to have it in for 24 hours to measure the amount of refluxing that he’s doing. Not fun… not fun at all! He had to have a brace on each arm to prevent him from bending his elbows and pulling the tube out of his nose. Anyway, this morning we went back to Vanderbuilt to get it out. Again, he did great!
We’re so glad that this is over for now. We need to rest…
Love you all!
Brian, Rochelle, Jesse and Levi


P.S. Jesse stayed with Bee-Bee and Papa-razzi (Brenda and Leland) and had a wonderful time!

Prayer for Levi...

I feel a little bit selfish sending this update asking for prayer for Levi. With everything going on in Haiti, our problems seem so small. And we do have so much to be thankful for. We have two amazingly happy, healthy little boys.

Anyway, on Monday January 25th Levi will be having another procedure. Three different Doctors will be scoping his airway. It’s different from the ones he has had in the past. His regular ENT will be measuring the depth of the scar tissue in his airway, a Gastro-intestinal Doctor will be assessing the damage that his Reflux has caused and how bad it still is, and a Pulmonalogist will go deep into his lungs to check them(he will be ‘flushing‘ them to check and see what bacteria lives in them). Levi’s trache was described to me as a ‘highway for infection and bacteria’. We have been so blessed in that he was not had problems with this, but that doesn’t mean that bacteria doesn’t exist in his lungs. One of my main concerns is that his ENT Doctor said that he would not operate on Levi’s trachea if there is still MRSA bacteria in his lungs. This was the staph infection that they both got when they were a week old. The problem is that Levi did have this before in his lungs and still has problems every once in a while with pustules on his skin. The last one he had was really bad. The only way to get rid of this on your skin is to basically bathe in chlorine water for a week, at the same time you have to disinfect with bleach absolutely everything that you come in contact with… pretty much impossible! The other problem has been with the reflux. They can’t do any type of surgery on his airway if it will later get damaged by the acid reflux. We have thought that it’s been under control for the past year, but every time that Doctor Goudy(ENT) has looked at his airway there have been signs of irritation from it. It some times takes years to outgrow this and some people don’t.

Anyway, we are going in with no real expectations… Hoping for the best, yes… We know Who is in control and we also realize that no matter what happens on the 25th, we will be okay. I never thought I would get to this point, I feel like I’ve been fighting it for two years! But I now accept God’s will, even if it doesn’t mean that my son will be healed. God is good, He is perfect. We gave our lives to HIM, we will follow(or stay) where He wants us.

Thank you all so much for your prayers and Love,

God bless,

Brian and Rochelle

Please Pray

"In You, O LORD, I put my trust; Let me never be ashamed; deliver me in Your righteousness. Bow down Your ear to me, Deliver me speedily; be my rock of refuge, a fortress of defense to save me. For You are my rock and my fortress; therefore, for Your name's sake, lead me and guide me" (Psalm 31:1-3).

Please be in prayer for us as we await a verdict with the upcoming hearing. Pray for Lic. Chávez, our attorney, to present a good defense, please pray for favor with the judge, (this lady with a reputation of not being very kind). Pray for the MP (public minister) not to arraign, but above all, pray for God's perfect will to be accomplished!

Dan would like to request permission to speak to the judge that day (Friday, September 4th). Above all, he wants to be a witness of God's love to this lady. He is praying for God to give him the words to say to her.

Thank you so much. My family and some members of our congregation will be fasting as well as in prayer that day. You are welcome to join us, if you wish...

Love,

Ana & Roshon