Again, a very late update! So sorry, I always think I will do better about ‘staying in touch’. I love reading other people’s blogs and always think that I should try and be one of the ones that does better about keeping everyone up to date with stuff. I think that in my case, I get overwhelmed about everything going on and have soooo much to write that I end up not writing at all!

We have continued to be so blessed. God has done amazing things in our lives, HE is so good! The boys are, well… their just incredible! They continue to grow and learn and smile, they are always, always smiling. They are hilarious! It is crazy to think that they are almost three. I thought that they weren’t really ready to be three, for one, they spent their first year of life just fighting to stay alive! It seems unrealistic to expect them to be caught up with other kids their age. They have been doing a lot of evaluations through the school system since they are aging out of the Early Intervention Program that they have been a part of since birth. It turns out that it is me that is not ready for them to be three. Yes, they are still smaller than most almost three year olds, but they are so smart!

They have been a little sick for the past three days, so last night I was holding Jesse and I started remembering how small he was, last year, the year before, the first time I held him! But their my babies? How are they getting so big?! Sometimes they will tell me that their big boys(or they’ll say their a cat, zebra, puppy, cow, you name it!) but other times they will say ‘yes, mommy I’m your baby’! Melts my heart.

This has been a very busy month for us, with all the testing for the boys. In two weeks Levi will have another procedure. A scope of his airway, lungs and esophagus. Two days after that, my babies will be turning three! Two and a half weeks after that we get to visit home, It will be Levi’s first time. Of course I am thrilled, they’re excited too! Levi keeps getting mad when we come home because he says he wanted to go to Mexico!

We have continued in our ‘healthier’ lifestyle. Levi isn’t on any medication. Unfortunately we have not been successful in getting their skin nice and healthy. Their eczema continues to be a daily battle. This makes me feel that his esophagus won’t look great when they scope him. But, he does continue to improve with his eating. It’s crazy to think that last year he would only take tiny little bites of baby food, by force and then throw up! The gagging is gone completely… God is so good… He’s always talking, he even tries to sing!

In the 9 months that we have been not following doctors orders, I have learned a lot about myself and what I truly desire. First of all I must say, doctors are great! I love many of them! But what they have to offer is what I don’t like. I want healing, and that only comes from God. Restoration… I want my Fathers hand to touch my sons airway and restore it. I don’t want a surgeon to share in God’s glory and I definitely don’t want their side effects. BUT, God is in control and HE knows the desires of my heart and He also knows what’s best for us and what will bring HIM the most glory. I will continue to ask and beg and seek His healing hand until He tells me to stop, until He closes the door. I have so much hope, even though my eyes show me not to, I have hope because I know my GOD and what He says He will do for His children. It’s going to be good, it’s going to be amazing! We don’t get His timing, but even then we know that it is perfect.

Thank you all so much for your continued prayers, for lifting up our most precious gifts to the Father, for walking this walk with us.

A very late update

I wrote this on my wedding anniversary, my computer was not working so I never posted it. But, here it is, only a couple weeks late!

5 years ago today I married the man of my dreams. It was a beautiful wedding, with 16 little bridesmaids, my two best friends and my future sister in laws. The weather was perfect, and although there was a little mess up with the sound system, it was perfect. But why oh why did my dad preach about hardship? About this invisible war that we are in? I didn’t think much about it then…

We had such a wonderful ‘dating’ time, getting to know each other was so much fun. Life was so exciting, and I couldn’t wait to start my new life as a married woman… if only I would have known! Don’t get me wrong, I LOVE my husband! I LOVE being married to him and he is the ONLY one for me. The craziness has come from our circumstances, which we have absolutely no control over. And we’re learning to deal well in the midst of those circumstances.

From day three of our marriage, the battle began and hit hard. Yes it’s slowed down this past year but now we deal with all the hurt and brokenness, and that’s no fun! I’m doing a Beth Moore Bible study and we were learning about fire and gold. When it’s first put into the fire it looks like a piece of charcoal, after all the outside stuff burns off, it looks beautiful! But if it’s left longer something else starts happening, what’s inside the gold, the impurities start coming out! I know this is what’s happened to me! And no, it’s not fun to live with me when my impurities are at the surface.

Brian has been my best friend, at times my worst enemy. I have admired him and been ashamed of him. Some days I feel like I could not love him more, and other days like I can’t love him! He has been a shoulder to lean on, and at times that’s all I get! I could go on and on with this. But you get the picture! Sometimes I wish our circumstances could have been a little more normal. I see couples that haven’t been through ANYTHING and I envy them. But at the same time, maybe we are getting over the worst to be able to enjoy what’s next more fully… Hmmm, I sure hope so!

In 5 years we survived a hurricane on our honeymoon, cared for 16 little girls with scarlet fever while my parents were away, lived 9 months in the mountains with me being on the verge of throwing up from being so car sick, started two adoptions, got our hearts broken right away with the first one. Got pregnant and very, very sick, as in couldn’t even hold water down! Traveled to a different country to give birth to my two 1 ½ pound babies. Fought against death itself for 3 months, spent the next year with no sleep, the year after that trying to figure what the heck had just happened and grieving for all that I had lost, at the same time feeling guilty for not just celebrating everything that we have. This past year has been about healing, accepting the things that cannot be changed, making new friends, learning how to fit in this culture, missing my home and everything that comes with it. Learning to be joyful always, and realizing that sometimes our hearts will always be a little broken. It’s okay to be sad, even when in the presence of the purest joy.

I see pictures of our wedding day and I am shocked at how young, joyful and beautiful we were! It’s amazing what 5 crazy years can do to you. But I pray that this is just the effect of what’s surfacing and that in the next 5 years we will gain some of that beauty from our youth, from our previous less complicated life. It’s been a hard run, but it’s been a good one. God is good, always. His purposes are eternal and he is molding us in His image, how incredibly humbling is that!

Long season

My aunt told me 'don't worry, better days are coming soon'... I hoped for those 'better days' but some days it felt like they would never get here. I have going around in circles.

When we realized that Levi would need his trache longer than we had expected and hoped for, I decided to let my hair grow. I wanted something physical to mark me, just like my son had his trache. And the day he gets it out I would cut my hair and the long and difficult season would be over. The longest I thought this process would last was 6 months. Then a year. Then two years. We have now entered into 2 and 1/2 years and the end is not really in sight. As most of you know, we didn't get the news that we were expecting from Levi's Doctors at Vanderbuilt. The change that we have seen, was not as evident as we hoped for and really, expected. So they sent me a couple of messages saying that we will return to give Levi his 10 packs of Splenda a day with the steroid. And 14 days of antibiotics just in case... I. Was. Furious.... just because they didn't see much change doesn't mean that what I have seen every day for the past two months isn't real. He is a different boy! He is eating, that is a Miracle! He is not throwing up after every meal. That is another miracle! He isn't gaging and chocking on every bite he eats, yet another miracle! But they spend 15 minutes with him in an operating room and determine that there is no improvement.

I have experienced freedom like never before. Or maybe this is what I used to feel but hadn't since the boys' birth. Yesterday I told Levi's ENT(ear nose and throat Doctor) what was on my mind and heart. It was awesome! I didn't want to be disrespectful, and I don't think I was. But I did show SOME of my frustration. The funny thing is that he told me not to wait till I was over the edge before talking to them... I told him that had happened three months ago and this was me cooled off. He then thanked me for waiting! LOL!

So, freedom... Healing... a New Season... Thank you GOD!

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