tag:blogger.com,1999:blog-62818787677608986302024-03-12T19:58:20.587-07:00One hundred and thirteen days of PraiseIn this you greatly rejoice, though now for a little while, if need be, you have been grieved by various trials, that the genuineness of your faith, being much more precious than gold that perishes, though it is tested by fire, may be found to praise, honor, and glory at the revelation of Jesus Christ.
1Peter 1:6-7Rochelle Rayhttp://www.blogger.com/profile/14413330120049807273noreply@blogger.comBlogger50125tag:blogger.com,1999:blog-6281878767760898630.post-47059740597694274812016-05-21T18:26:00.002-07:002016-05-21T18:26:57.587-07:00<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; font-size: 11px; line-height: normal;">
<span style="font-kerning: none;">I think it’s time to make this “official”… most of you probably already know, but for those of you who don’t, God has opened the doors for us to move back to Mexico! I’ve been wanting to write about this for a while, but there have been so many emotions that have kept me from it. I’m going to do my best to give a quick explanation. Of course I can’t do that without going back to the beginning. Brian and I never thought we would ever leave Mexico, God had brought him there and we had work for a lifetime ahead of us. The way we ended up here, in Tennessee, was definitely God’s hand… definitely. After the boys were born, I remember thinking how awesome it was going to be to let all our loved ones in Mexico see them. I remember thinking of ways to keep germs away from them and having to teach everyone about pre-mature babies. After Levi had his tracheostomy, the doctor said that he would most likely have to have it for two years. He said there was a chance that at his 6 month check up we would see enough improvement to get it out then. In my heart he said hopefully he would get it out soon but worst case scenario it would be two years. When the two year mark came and things were so bad with Levi’s airway I felt hopeless. I wanted so badly for Brian to agree to move back with Levi’s trach and not wait for that big surgery. Obviously I didn’t get my way. I wrestled with Brian and God for many years. I felt like nobody around me really ‘got it’ and I felt so alone. When we had outgrown our townhouse and started trying to sell, Levi no longer had his trach, my heart went through the ringer. I grew up always hearing my grandmother tell the story of how she didn’t want to raise her children in the mountains but how grandpa always said that he would never leave. She finally gave her burden to God and shortly after grandpa was moving his entire family to the town of Alamos. So I knew, very well I needed to give my desires, my will to God, surrender completely to Him… so that I could get my way! When we were moving into our new house, God was very clear about me needing me to make this my home. In our townhouse I didn’t do anything, it was temporary… for my sanity’s sake it had to be temporary. So why invest in something that wasn’t going to last? With a broken heart I walked in obedience and painted this house, decorated, made things for it. I got close to people, where as before I only had a hand full of people that I called friends. I’ve learned that it’s not about letting go in order get your way, but about letting God take you through the process that He needs you to walk through. In order to go deeper in your Faith, in order to grow closer to Him. I’m definitely stubborn and a slow learner. </span></div>
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<span style="font-kerning: none;">While in Mexico, God started speaking to Brian. He’s always been careful of what he says to me about Mexico, understandably so, so it caught me by surprise when he started saying things that made it sound like he wanted to stay. I’ve kept my heart so guarded that it still doesn’t feel totally real, what we are about to do feels like a dream! Even though we have grown in so many areas, we totally realize how what we are wanting to do, what we feel God is leading us to do, is so much bigger, greater, and definitely not humanly possible! It’s both terrifying and thrilling. To enter into a place where you absolutely can’t do it on your own and without God’s mighty power you are going to fail miserably, it’s very exciting! </span></div>
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<span style="font-kerning: none;">If we had left years ago, I wouldn’t have cared to go back alone. But now I don’t want to. I know and understand that we need the body of Christ to back us up. We need an army of prayer warriors to love and pray for us. To keep in touch and support us. To visit and care… we need you all to go with us. </span></div>
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<span style="font-kerning: none;">For the glory of God and to make His name famous, to bring the good news to the poor and oppressed, to set the captive free and go deeper in our faith… that’s why we are going. We CAN. NOT. WAIT! to see what God is going to do in us and through us and through you all…</span></div>
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Rochelle Rayhttp://www.blogger.com/profile/14413330120049807273noreply@blogger.com0tag:blogger.com,1999:blog-6281878767760898630.post-5399830770790373882016-02-20T07:39:00.002-08:002016-02-20T07:39:59.094-08:00<div class="p1">
<span class="s1">There is way to much to write in a facebook status update, even now I don’t really know if I can paint an accurate picture of how I feel and what we’ve been up to. All is quiet right now, but my moms 4 cats are running and jumping, climbing trees and being crazy! They are so fun. Their mom cat abandoned them because although they were big, they would not stop nursing. My niece Aaliyah begged mom to keep all 4 and not get rid of any. So she has one, Obed has the other and my twins have the ‘twin cats’. One thing that always amazes me and blesses is me beyond words is getting to watch my boys enjoy the cats and dogs here(there are three dogs). Those of you who are around us enough in TN know that Jesse and Levi are allergic to furry pets. Very allergic! But for some reason, on the ranch they can hug, kiss and lay on these filthy animals and be fine. I remember years ago Jesse asking me if in Heaven, he would be able to play with dogs… SO, this is a gift for sure. We love hugging the boys in the middle of the day and realize that they smell just like the dogs. </span></div>
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<span class="s1">The first two weeks we were here, we stayed busy with my mom’s aunt,Tia Cruz. She came to live on the ranch with my grandparents when she became a widow. When my grandparents went to live in Alamos because of health reasons, she came to live with my parents. For two years she was here. Those of you that know her, know that she was always smiling and ready to give you a big hug and kiss(or as Jesse and Levi said, it’s more like a bite with no teeth!) She had a little cold and wasn’t feeling well, that made her so mad! Then she had a stroke and stayed at the hospital for over a week. Two days after she came home, she gracefully and peacefully passed away. I loved what my dad said “resting in peace? Heck no! She is rejoicing and dancing, laughing and talking!!!” Because of her hearing problems, she never was able to speak clearly. She had a terrible upbringing, grandpa doesn’t ever speak negatively about his mom who did pass away signing and praising GOD, but grandma has told us plenty of stories about this woman. She was evil, very evil. 4 of her 10 children had severe hearing problems, two of them had a little trouble. I don’t know if this was the cause of them developing a little slow, but they were slow. When one of them was a young boy he got kicked in the mouth by a mule, she took a knife and cut out part of his gums because his teeth were hanging loosely. She was also a midwife, the one they'd call when there was an unwanted pregnancy. She would kill the babies once they were born. Tia Cruz was raped by a relative. In her innocence, she was so excited about the baby, my grandmother told me how Tia Cruz would be knitting for the baby and would lovingly caress her belly. I don’t know how long or even if she got to hold her little girl. See, even though she was loved and wanted by my Tia Cruz, she was an unwanted baby in her mothers eyes. So when she passed away, I couldn’t hold back the tears of joy realizing that my great aunt was not only with her savior, but also with her baby girl! Her name means ‘Cross’… How perfect is that? So much pain and suffering that a cross represents. AND redemption, healing and fullness of life. Even on earth she received part of that fullness… part of the healing. One of my cousins lives here on the ranch and he and his wife have three little girls. My aunt LOVED them! Especially the littles one. They came over yesterday and were in Tia’s old room asking for her repeatedly and looking for her. The older two were excited and said that they wanted to go to Heaven with her. </span></div>
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<span class="s1">We completed the renovation of the kitchen in “Collie’s house”. The termites had completely destroyed it! We could lift the entire kitchen cabinets with one finger. Im so sad that I didn’t take a before shot, because it looks amazing now! Brian did an incredible job. We have loved staying in this house. For those of you who don’t know, it’s a house that a family friend built right next door to my parents house when they were first building theirs. Since then, I’ve stayed very busy cleaning and organizing the different spaces here. Because my parents have places to be and Bible studies to go to every day of the week, it doesn’t leave them much time to do these little practical things with not much eternal value… Needed but just not a priority. Their house is so big and once upon a time, every single room and closet was fully needed and used to its maximum capacity… and then some! It was built to house the girls from the children’s home, our daughters and sisters. Once we had 23 living here. 12 of them were the ones we had for years and years. I miss those days. Anyway, the big house was left in a big mess! Getting rid of what is no longer used and what has been destroyed by termites has kept me very, very busy. But I love doing what nobody else has time to do, and as my mom says, ‘nobody else is brave enough!’ My sister says ‘crazy enough’. It’s not very glamorous either. Definitely not ‘facebook status worthy’. </span></div>
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<span class="s1">We’ve also been slowly visiting people. There is so much need! I could cry just thinking about it. Every direction we go, we have people that desperately need encouragement and Spiritual help. My heart is so heavy for the many, many people who are suffering and feel so alone. My sister and I got to visit my cousins wife and children just the other day. They have 5 children and the 5 month old baby was born with hydrocephalus, blind and a cleft foot. He is so precious! But because sometimes people’s first response is ‘shock’ his mom keeps him inside the house with all windows closed to keep him safe. She loves her baby and calls him a gift from God, but others tell her he is a punishment for her sins. We had a wonderful time with her and are encouraging her to come to the women’s retreat on April 2. We hope she will.</span></div>
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<span class="s1">Last week my dad brought a lady from the mountains on his ultralight plane. She needed a ride to visit her mom who has having a surgery. She says she sees her every couple of years because getting here is so difficult! Her mom is a believer and that is the only way she has kept her sanity. Everyone in that community in the mountains are involved in the same business, drug trafficking. For this woman to casually be talking about what they go through was mind blowing. 4 of her 5 brothers have been murdered, one of them was only 19. She said it was the one that is alive who is responsible for their deaths. Every time they were trying to kill him. Several years ago, her sister in law had left one of her brothers and was working near Alamos on her own. Together with 15 people, two of them being young children, she was murdered. The bodies were found months later. Her two year old daughter miraculously escaped. No one knows how but the little girl says she followed a cow. And slept with the cow. Two or three days later, an indigenous man found her, he knew about the bodies but was afraid to let the authorities know. He didn’t want to be blamed for such a crime. They kept her safe for a month and somehow found a way to contact this lady’s brother. He only traveled by night because of fear. Can you imagine finding out that your two year old daughter survived such a tragedy!? They say the little girl saw everything, and that later when she saw her dad butcher a goat, she described that that was what she saw when her mama was killed. She's 8 now and lives with her grandmother, and her dad is one of the sons that was murdered. </span></div>
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<span class="s1">This world needs a Savior… Hope… Rest… Peace… to know God in an intimate way. It’s a privilege to be here. More than words can express! Im so thankful for our Church family and Pastors and friends who are making this possible. You share in the fruit! We love you all… my dad is getting ready to take off, flying to the mountains… prayers are always appreciated! </span></div>
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Rochelle Rayhttp://www.blogger.com/profile/14413330120049807273noreply@blogger.com0tag:blogger.com,1999:blog-6281878767760898630.post-73606444525074293362015-08-18T17:19:00.004-07:002015-08-18T17:25:38.996-07:004 year anniversary of Levi's airway reconstructive surgery <div class="p1">
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<span class="s1">Today is the 4 year anniversary of Levi having his airway reconstructive surgery. I have this app called Timehop, it sends me notifications of what I posted on social media on the same day of years past. So this month I’ve been getting little reminders of the emotions and feelings I was going through in those days. Last night I was quizzing Brian and the boys to see what they remembered about that day and season in general. Thankfully, Levi doesn’t remember anything! I remember they told me that some of the anesthesia that they used caused amnesia. So most likely he wouldn’t remember what went on. Surprisingly, Brian doesn’t remember either! Like anything… Once I started telling him, he sorta could… But most of the details he doesn’t remember at all. Jesse remembers what he ate on that day of the surgery, who he played with, prizes he got, people he was with, things he learned. I remember telling everyone that was helping us with him to not worry about correcting him, that spoiling him was just fine… Me? I remember it all. And it still makes me a little lightheaded and gives me the feeling of being out of breath. We had waited so long for this surgery, his whole life! He had prayed earnestly and fervently for healing, for God to miraculously intervene and make his airway whole, new. </span></div>
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<span class="s1">Some dear friends had gone through this surgery with their little boy and were ‘preparing’ us as much as they could and kinda let us know what to expect. Well, like most things in Levi and Jesse’s lives, nothing went as expected! </span></div>
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<span class="s1">The 5-6 hour surgery went very well, we had our people, you all praying! We felt it, we thanked God for it. I remember the people who sat with us in the waiting room, the messages we got throughout the day that encouraged us. The mini-meltdowns that I felt was entitled to… When surgery was over… well, nothing could have prepared me for the days that were ahead of us. </span></div>
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<span class="s1">I was expecting to find my baby sedated, yes with tubes and wires all over but sleeping peacefully. Instead I entered a horror scene. Too many Doctors, nurses and respiratory therapist all around him and messing with him, a bright huge light right over his bed and worst of all, my baby boy terrified, confused, in pain and unconsolable. Thank God for a dear friend that helped me through not passing out. All I wanted to do was close my eyes and be done with it all. But then there is that strength that takes over, unexplainable, supernatural power that takes over your body and autopilot kicks in. Thank God for HIs grace! This was the beginning of yet another long road ahead of us. A different one. At times I couldn’t see light at the end of the tunnel. </span></div>
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<span class="s1">Before the surgery, Levi was so exited that he was going to be able to swim like Nemo. so after surgery we would remind him that soon, very soon he was going to be able to swimming. It would brake my heart that that was no longer a comfort to him. He didn’t care about swimming! In fact, nothing in the world was worth the price that he was having to pay. In his mind that is. God so clearly spoke to me how that is His heart towards us. See, I knew what the end result was going to be, I knew that the pain and discomfort were only temporary and that his whole life was going to change for the better. Not only was he going to be able to play in water, but every second of his life was not going to depend on a little trache accidentally coming out. It was what we had to go through to enjoy what we have now. And it was worth it… of course it was! But just like Levi, at that moment couldn’t imagine how it could be worth it, thats how I so often feel when going through struggles. And I can’t help but picture my Heavenly Father reminding me of His truth and all the glory that will come… If we’d given Levi the option, he would have chosen to not feel anymore pain and keep the trache. In fact, he told us this! So thank you Lord for not asking me what I want, but giving me what you know I need… </span></div>
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Rochelle Rayhttp://www.blogger.com/profile/14413330120049807273noreply@blogger.com0tag:blogger.com,1999:blog-6281878767760898630.post-25810837575766252952013-11-04T09:41:00.001-08:002013-11-04T09:42:51.162-08:00Pictures from almost a year ago... <div class="separator" style="clear: both; text-align: center;">
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Last year, we got to spend time with both of my grandmothers, it is always such a special time, I don't take it for granted and I savor the sweetness of it for a long time...<br />
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This is the boys with my cousin's daughter Dariana. Her older brother, now in heaven was born with a heart condition. His life brought so much joy and love, can't wait to see him again!<br />
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For their 5th birthday they wanted to be superhero's!<br />
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This little boy is David. His mom, aunts and uncles lived with us in the children's home for many, many years. I hadn't seen the girls since they left about 6 years ago. The boys realized that David does not know Jesus and doesn't follow God... it was very sad for them and for us. We pray that God will remind them of His goodness and unconditional LOVE... Rochelle Rayhttp://www.blogger.com/profile/14413330120049807273noreply@blogger.com0tag:blogger.com,1999:blog-6281878767760898630.post-27246189254769069152013-11-04T09:27:00.000-08:002013-11-04T09:27:21.812-08:00Sovereign God It's amazing to me how in the Bible, God started revealing Himself to humanity little by little. He is so gracious and realizes how small we are, how small are brains are and how we just can not get it all thrown at us at once. We would probably explode if He did. <br />
So, in the beginning He reveals Himself to us as the Creator, MIGHTY, Strong GOD. In His name He adds that He is three in One. He shows Himself as EL ELYON, the Most High, Ruler, Sovereign God. El Roi, the GOD who sees (me). Adonai, Master... Lord. El Shaddai, GOD Almighty, all supplying, sustainer. Jehovah, the self existent One, the Most Holy, the Great I AM. Jehovah-Jireh, The Lord Savior, provider. Jehovah-Rapha, the Mender, the cure, the one who makes us whole, the Healer not only of sickness but of our souls.... <br />
We had the opportunity to share with the youth kids from Church two Sundays ago, that got me rethinking of a lot of stuff. Also, on Thursdays Im going to a Bible study that my mother in law is leading on the names of God, called 'Lord I want to know you'. It's the second time I have had the opportunity to study this book and it is just so amazing. When I look back at my younger years, I know that I loved God, that I knew Him well, I thought anyway. But I definitely had Faith in HIM. I could see Him as my provider, my sustainer, the One who Rules over all, my Master, my healer, etc. With the boys birth He tested it all. He had tested me before on a smaller scale, but He really tested me big time. It's crazy that almost 6 YEARS later, I am not even close to done processing it all. In a way I see this as Gods grace, not showing Himself to me in a way that I can't handle. I saw a dear sweet friend a couple of weeks ago, she was our connection to Baptist Hospital and the boys first nurse. She was telling me how some of her nurse friends get frustrated with parents, saying that they are so in denial. She tells them to leave them alone, to allow them to hold on to hope and not take that away. I can see how this happened in my life, God sheltered me from my own brain and little by little He has let me experience some of the emotions I could have had during to hardest part of the trial. Sometimes it makes me a little bitter, and I am ashamed to admit how long and slow this is all been for me to grasp, really to accept. I am a slow learner, I have so many questions and frustrations, I make myself feel overwhelmed and like I'm drowning! Thank God that He sustains me even in my hurt, anger and confusion. He slowly leads me into the deep. <br />
God never makes mistakes, my name means 'little rock'. I know that my parents did not pick out that name for me because they just loved the meaning of it! I used to say that I could never survive another NICU experience, I said that if that's what God would give me, then I never want another child. Slowly, surely I can say that no matter what GOD, sovereign Ruler of all, who is ABOVE all and has POWER over all, if He always the trails in my life, then by His Grace I will survive them. <br />
I've heard people say that because we live in a fallen world, bad things happen. That ALL evil comes from the evil one. And although this is true, it was a infuriating thing for my heart to hear. MY GOD is greater, MY GOD is bigger than the universe, NOTHING can happen without HIS permission, nothing can catch Him by surprise, we do have free will and I cant explain or understand fully how the two work together, but my heart knows they do. The conclusion that I come to is this. Everything, good or bad that God allows us to go through, weather its an attack of Satan, a 'natural' disaster or His doing, it all is filtered through His great and perfect Love for us. He is outside of time, He knows that pain will only last a moment, compared to eternity and the Glory that awaits us, it's but a blink of an eye. So yes, we live and operate in this 'fallen world' but GOD is over it all, above it all. Sovereign(possessing supreme and ultimate power, absolute, unlimited, unrestricted, boundless, total, unconditional power and authority). <br />
I praise you Father, Ruler of All and I choose to rest in your great love for me today... Rochelle Rayhttp://www.blogger.com/profile/14413330120049807273noreply@blogger.com0tag:blogger.com,1999:blog-6281878767760898630.post-21528372303852008912013-10-27T21:06:00.003-07:002013-10-27T21:06:25.911-07:00Going back in time...Since I stopped posting here so long ago, and I always want to but I feel overwhelmed about how much there is to update on, I've decided to go ahead and 'go back'. I feel like I need to anyway to maybe process some of the 'stuff' that has happened. Please always feel free to leave a comment, even if you don't think it's something I want to hear, I need truth spoken into my life! Sometimes my emotions get in the way of growth... <br />
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One of my dear cousin in law's twins is having his tonsils removed in the morning, she asked me to be there to 'keep things in perspective'. It's been such a mixture of emotions being a part of her twin experience. Her twins were born a little over a year after my boys were born. They were premature, 34 weeks I think. I've heard her tell people many times that her NICU experience felt like a breeze because she had just watched us go through ours. I always feel a little sad about the fact that she didn't really feel the right (maybe?) to let herself feel the typical things that one would feel having a preemie(or two) and leaving them in the hospital. And at the same time I get why she felt that way. But then I think if I put what i went through, what my babies went through up against other moms and babies, some of these being my friends, I can feel really bad about complaining! Our pain, whatever scale its on is still pain. We feel it, even if it's gratitude that we should be feeling... its real... it's validated. <br />
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All this got me thinking of Levi and his reconstructive airway surgery. You know? Jesse can remember tons of little details surrounding the day of Levi's surgery. It blows my mind how he will, out of the blue start talking about it and things that happened that day even though it was over two years ago! Levi was given medicine that causes amnesia after every surgery... man, I wish I could have had some of that! He doesn't really remember anything about that horrific surgery. I am definitely thankful for that... if only I could forget. <br />
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We had waited for it for so many years... we thought he would be able to have it before age two. The time had finally come and although I knew(or I thought I knew!) it would be hard, I was so excited that it was finally happening. I so wasn't prepared for the process, but then I think nothing really could have prepared me. It was something we had to go through to obtain the amazing goal of being trach free. Such a valuable prize on so many different levels! <br />
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The process... oh the process... After the 7 hour surgery, in witch they cut part of his rib out(he has a big ole 2 inch scar there), cut his throat open(one inch scar), cut away part of the scar tissue inside his airway and used part of his rib as grafting. Then they put a tube in his airway to keep it all from collapsing, the surgeon described it as feeling like a 'lipstick tube' stuck in his airway. That was a lot to handle. We were told that they would keep him sedated for at least 24 hours after the surgery, that sounded great to me! But instead, when surgery is over and they have taken him to the pediatric intensive care unit where he would spend a week at, we find him half awake, confused, angry, in pain. There are about 5 medical people messing with him, he's trying to fight them of! There is a bright spotlight right above him. He wanted me to hold him but I couldn't, the surgery was so fragile and moving him was to painful and dangerous. He had two IVs in him, a feeding tube in his nose. It was worse than when he was in NICU because when he was there, he was a little innocent baby unaware of everything. This time, he was aware and it was so painful and confusing. He would sign that he wanted water, couldn't have any, he would sign that he was hurting, that he wanted to be held, that he wanted his bottle! Oh it was torture.... Lucky for me, a friend was there with me and she helped me breathe through the initial shock and kept me from fainting. <br />
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I realize that most likely nobody will benefit from reading this, it's really just me that needs to get it out! We all want the prize, the end result, the benefits of our situations! I knew that all the pain was going to be worth it when we reached our goal. I got a glimpse of our Fathers heart towards us, his little children. Levi absolutely could not understand what was going on, why we were allowing it. I know that he felt that NOTHING could be worth that amount of pain and discomfort. And had he had the choice, he would have said that he would rather keep the trach and not go through the process! But we knew, we understood that it would all be worth it, that the pain would go away and the benefits would be so amazingly wonderful, and we were right! It was all worth it. And like I said before, he doesn't even remember any of it! <br />
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Whatever painful circumstance that you find yourself in, even if it's on a smaller scale, remember there is purpose in it. Anything that our Heavenly Father allows us to go through has a purpose, otherwise he would spare us the pain! But HE knows what we need to go through in order to grow, to be whole, to obtain the prize and reach the goal. This summer that Levi got to swim was so incredible! He loved it so much and was so proud of himself for jumping in the water a million times. We are so thankful for what He's done and the gifts that He has given us... <br />
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So, please pray for little Peyton's surgery tomorrow, that all will go well and that his family will have peace through it all...Rochelle Rayhttp://www.blogger.com/profile/14413330120049807273noreply@blogger.com0tag:blogger.com,1999:blog-6281878767760898630.post-79481993709104959752012-02-07T09:59:00.001-08:002012-02-07T09:59:25.193-08:00Last MondaySO, last Monday went really well! I’m sure many of you know all this by now, especially if you’re on facebook. We got there at 2pm and actually got to back into the O.R. a little early, that’s always a good thing! By 4:00 the doctor was done and came to talk to us (we weren’t even scheduled to start until 4:15). The first thing he said was “I like Mexico. Mexico was good for Levi.” Things looked so much better, good enough to start ‘capping’ the trache and downsizing from a size 4.0 to a 2.5! We started out with a 2.5 when he was two pounds! We ended up staying overnight to make sure that Levi could breathe with his trache capped(it’s literally a little cap that goes over the opening of the trache tube so that it’s not being used but still available in case he needs it). Unfortunately Levi took a really long time to wake up and even longer to settle down. He. Was. Furious. I think that the latter in the day the procedure is, the worse he does waking up. He’s gone all day with no food, no nap and it’s just not a pretty picture. We needed him calm before he could have the cap. They moved us upstairs to a room and by this time it was after 6. I started asking for the cap a little after that and no one knew what I was talking about :S That was frustrating! Finally they realized that that was the whole point of us staying over night, it was so that they could monitor his breathing while capped… at around 10:30 pm they realized that they could get a cap because they were locked away at the clinic. They ended up using a passy murry valve instead (it goes in the opening of the trache and lets you breathe in but closes so that you breathe out through your mouth or nose, it’s used to speak). Levi didn’t get much sleep and I didn’t get any at all, but we had to stay all day the next day to make sure that he was okay with the cap. He did great and has been using it ever since! He loves it, to say the least… he is talking non-stop and is constantly making sound effects for everything he does, it’s pretty amazing! Several people of commented on how much clearer he sounds and how easy it is to understand him. The funny thing is that I don’t notice that as much. But he definitely is louder! When we finally made it home after being at the hospital so long, Levi grabbed Jesse’s face and said “Jesse… Shut up…” We have NEVER told them to shut up before! Now, those of you who know Jesse, know just how much he talks… really it is non-stop and Levi believes it’s his turn now! They got a CD for Christmas from an aunt and uncle and he is singing the songs at the top of his lungs, it’s amazing… <br />We will be going back to Vanderbilt in three weeks. The Doctor will check his airway again, if things still look good the trache will come out… Wow… I can’t believe this is happening! Thank you Lord for bringing us this far, and thank you all for your prayers!Rochelle Rayhttp://www.blogger.com/profile/14413330120049807273noreply@blogger.com21tag:blogger.com,1999:blog-6281878767760898630.post-37708483099143963912012-01-31T13:43:00.000-08:002012-01-31T13:46:19.704-08:00We’re back! And I realize I was supposed to update while in Mexico… but who was I kidding? There’s no time to sit at the computer while in Mexico! The time there just goes by way to fast and at the same time it felt like we were there for forever… it was pretty awesome. We got to see most of our relatives and a lot of friends. I finally got to meet my best friends little girl… we celebrated my grandparents 60th wedding anniversary, that was pretty amazing. We had 15 of their great-grandchildren there, only three were missing… two on the way (like this month!) Most of my cousins were there (I think there’s like 30 of us). It was so encouraging to re-hear my grandparent’s story, how God brought them out of where they lived, the place where my grandpa’s mom had been born and buried and that was his intention too… God did some miraculous things to bring them to Alamos, my hometown. Anyway, it was really fun.<br />The boys were very busy getting very dirty, playing with their cousins Aaliyah and Obed every chance they got! We made cheese at grandma’s house; they loved spending time with their sister Josie and all the other girls there. We had fun at the communities although we didn’t go that often. There where tons of relatives staying at the ranch the first two weeks, that was fun and chaotic! Lot’s and lot’s of celebrations for sure. On our way back, we stayed at in San Carlos (beach town) for three nights. That was incredible! It was my sister’s, sister in law, brother and niece and nephew. The water was too cold to get in, so it was perfect because that way Levi didn’t feel left out. They played in the sand for hours and hours.<br />Being there was such a blessing, yet bitter sweet. Leaving was also bitter sweet… it’s hard to visit the place that I love and miss so much, there isn’t enough time to do everything and just catching up with people makes me sad… I miss being a part of their everyday lives. Also, it was more noticeable this year how American the boys really are… they missed their home a lot and there are just so many things about Mexico that they just don’t get… the language for one! <br />The minute we were back in the US I realized that I hadn’t thought about Levi’s next scope and that is something that is happening tomorrow at 4:15! I have such mixed feeling about… it could be really, really good, or really bad… I’m pretty sure that the waiting time is over. We will know if Levi is going to need another major surgery or not (makes me nauseous just thinking about it) or if we can go ahead and start working on getting his trach out (that is like a dream!)<br />The other night I was watching decannulation videos on youtube (when kids get their trach out) and it really feels like a dream that is was too good to come true… we are hoping and praying for that!<br />Thank you all for your continued prayers, we love you all!Rochelle Rayhttp://www.blogger.com/profile/14413330120049807273noreply@blogger.com0tag:blogger.com,1999:blog-6281878767760898630.post-89511452153760470762011-12-07T07:32:00.001-08:002011-12-07T07:32:41.414-08:00This is the first time in quite a while that I’m actually excited to write an update! Monday’s procedure went very well. We got there at 9am but unfortunately didn’t get started until 12! One of the Doctors has called to the ER so we waited for him. Levi, thankfully was very patient and entertained. <br />Dr. Acra, the gastro-intestinal Doctor was there with Dr. Wootten(ENT). Dr. Acra hadn’t seen Levi since April, when he said that we could go ahead and do the trache surgery. Anyway, he said that to the naked eye, Levi’s esophagus looked good. We will have the biopsy results next week to confirm. After that Dr. Wootten came out and said that things looked a little better but he wasn’t too sure yet how much better- he paused and said “why am I down playing this? It looked way better and I am very encouraged!” Of course things can change, but for now we are celebrating! Plus, he said we could take a two month brake and then check, if things still look really good then maybe we will start talking about getting the trache out… We need a two month brake! <br />So it was great! Things looked better and we get to go to Mexico for 6 weeks! Unfortunately Brian can’t be there for that long. We will leave on Monday and then he will leave a week after that and hopefully get to stay for three weeks. The boys and I will stay two extra weeks after he leaves. That’s the plan anyway! Like I said in my last update, we NEED this brake! I feel like I’ve been under water for months having to hold my breath (okay, maybe that’s a little exaggerated)…. <br />Hopefully the next update will be from Mexico! Love you all and Merry Christmas!!!Rochelle Rayhttp://www.blogger.com/profile/14413330120049807273noreply@blogger.com1tag:blogger.com,1999:blog-6281878767760898630.post-72155191006578653172011-12-04T11:52:00.000-08:002011-12-04T12:20:52.078-08:00UpdateHey everyone, thank you so much for the prayers for Jesse… he is totally fine now! We did end up staying in the hospital for 5 days. It took him a long time to get off of the extra oxygen, but the day I took Levi with me to Vandy and stayed all day, is the day that Jesse went from having to have the oxygen at all times (like it would come off for a few seconds and he would start going down!) to being totally fine without it. We came home on asthma medicine to prevent incidents like that one in the future. We really don’t like having him on it but until we can find a better alternative, we will continue to give it to him…<br />We left the hospital on Tuesday and then had to go to the pediatrician the very next day to make sure Jesse’s lungs still sounded good, thankfully they did and his ear infections were gone as well. Levi’s ear looked much better but not 100% just yet. <br />We are needing wisdom and prayer to decide if we want to stay with our pediatrician or find a new one. Do you remember when we first came home from the hospital after Levi’s big surgery in August? The Pediatrician on call was freaking out because his feeding tube had come out and I didn’t let the ER people re-admit him to try to put it back in after two failed attempts? Well, the same lady came and did rounds at Vanderbilt and after listening to him once decided that nobody there could wean him off of the oxygen or space out his breathing treatments for two days. I. Was. Furious. We couldn’t go home until he was off the oxygen and on every 4 hours of breathing treatments. We had already been there for 4 days and he was doing so great. Everyone disagreed with her(respiratory therapist, nurses, resident and fellow), but she made it clear that she had the authority to decide. After talking to our pediatrician we did get that resolved and left the next morning. This Doctor is the owner of the practice and I’m sure she is a smart women. I read her profile and it sounds like she is a great Christian as well. But we have just had the worst experiences with her! The two times that we have had to deal with her… well… they have just been horrible experiences. SO, if the boys ever get sick on a holiday or if they are at Vanderbilt on a Monday, she will be there… Anyway, please pray for God to give us wisdom on whether to stay there or find someplace else, Brian and I love the boys pediatrician but don’t know if we love her enough to risk having to deal with the other Doctor again. <br />So, tomorrow Levi his having yet another scope. Gosh, I don’t even know how many he’s had since his big surgery! Too many for sure. We are hoping and praying for a miracle, that his airway will look clear and not irritated, the swelling completely gone and that the Doctor will see a nice sturdy and strong structure so that he can take his trache out with confidence and his airway will never collapse. Not too much to ask right? <br />One week after tomorrow we leave for Mexico. To say that I am excited would be an understatement! This has all been very exhausting and I just need to breathe in air from my beautiful ranch… no doctor appointments, no phone, no crazy holiday traffic… just surrounded by my crazy amazing family. Enjoying the different community Bible studies and delicious food… right now it sounds like a dream! <br />Love you all and will let you know how Levi’s airway and esophagus look…Rochelle Rayhttp://www.blogger.com/profile/14413330120049807273noreply@blogger.com0tag:blogger.com,1999:blog-6281878767760898630.post-5716270359411704812011-11-25T21:27:00.001-08:002011-11-25T21:27:35.073-08:00Please pray for JessePrayers please! This time they are mostly needed for Jesse. We took him to the pediatrician this morning after about 5 days of having a cold/cough. He was actually doing better but thank God the pediatrician said to bring him in anyway. He has a double ear infection and his oxygen levels were so low, we almost had to go to the Children’s Hospital by ambulance! They thought it could be pneumonia and haven’t ruled that out yet, but are thinking its asthma. We were at the ER for about 6 hours and they couldn’t get him breathing well enough so tonight he is in the ICU. I’m so thankful that this is all so very new to Jesse; this is his first time back to the hospital since he left as a 3 month old -5 ½ pound baby. Although it is super hard on him and he doesn’t get why he has to have ‘strings on his wittle hand’(IV), the pulse oxymiter is driving him crazy and he insists that he feels better and wants to be all done… all I can think about is how awesome it is that he hadn’t had to go through this before, and I know that this could have been a normal thing for him but it’s not. <br />Also please keep Levi in your prayers. Yesterday he started acting a little sick, he too has an ear infection and a cold. If what Jesse has is viral, it’s very contagious and Levi has been around him all along. He is coughing pretty badly tonight.<br />Thank you all so much for praying!Rochelle Rayhttp://www.blogger.com/profile/14413330120049807273noreply@blogger.com1tag:blogger.com,1999:blog-6281878767760898630.post-38769484170828082492011-11-23T20:49:00.000-08:002011-11-23T20:51:02.531-08:00happy thanksgiving!!!Four years ago tonight, I had traveled for two days; 2000 miles while in labor. When looking back, I remember not being scared. I’m not an anxious person, not usually anyway. I was calm, from looking at me you would have never guessed that anything was wrong. I didn’t want to lie at the airport, I didn’t even have to I was so calm! Crazy… actually it was more like I was naïve. And also, God only lets you see what you need to see at times, to be able to get through the storm. Today? I couldn’t do it, no way. My dad had taught me the night before how to give myself a shot… lol… for those of you who know me, like from before, you know that I don’t do well with any of that! But hey, they were to slow down my labor… of course I was going to do it, no problem! When we landed in Nashville, all I wanted to do was sleep. I was a little disappointed when everyone insisted I go to the hospital to get checked out. About 6 hours later I was in the operating room having an emergency C-section. It’s kinda strange looking back, because I felt relieved. I had been in so much pain and my contractions were just getting worse, I couldn’t imagine having to stay that way for weeks. Now, looking back I realize that that pain was NOTHING compared to what was coming. They told me to not expect any baby cries, that they were too little for that. But we did hear them, it sounded like a soft kitten cry. The Doctor that helped deliver them was very impressed with how strong they were, he’s from Mexico City so of course he said that they had good strong Mexican genes to thank for that. After that I just remember being very light headed all the time, close to fainting constantly. When my baby cousin was born, 4 years before that, my aunt sent me with him and a nurse that was going to poke his heal and have drops of blood for the newborn tests that they do and I barely made it without passing out… like BARELY. SO, seeing my very tiny babies with IV’s, tubes and wires everywhere was difficult to say the least. And for 113 days they literally had to fight for every breath they took, and so did we. I named my blog ‘113 days of praise’ hoping that one day I can look back on those days as something to greatly rejoice about, a trial that tested us and found us praising, honoring and glorifying God ( IN THIS YOU GREATLY REJOICE, THOUGH NOW FOR A LITTLE WHILE, IF NEED BE, YOU HAVE BEEN GRIEVED BY VARIOUS TRIALS, THAT THE GENUINENESS OF YOUR FAITH, BEING MUCH MORE PRECIOUS THAN GOLD THAT PERISHES, THOUGH IT IS TESTED BY FIRE, MAY BE FOUND TO PRAISE, HONOR, AND GLORY AT THE REVELATION OF JESUS CHRIST. 1PETER 1:6-7). <br />Those 113 days we did praise, we cried and begged like never before. Everyday brought new challenges, every brain scan that didn’t show damage was a victory. I feel like we did enjoy the victories but at the same time, things could and would change from one moment to another. It’s like we couldn’t take deep breaths. Looking back, mostly I feel pain, resentment. My sons birth day was the worst day of my life… I know it sounds terrible and I didn’t start feeling that way until close to their 1st birthday, when I started re-living those terrible days. I so long to see them as days of praise! But it was the day that my twins started suffering so very much… the day they were born 15 weeks early. Please, don’t get me wrong, it’s also the day that God showed his grace and protected us from death. I am thankful that I have two very happy, amazing, joyful, precious boys… if only they could have stayed in me longer.<br />It doesn’t help that things aren’t going well with Levi and the trach removal process. I just thought that by now, by their fourth birthday we would be so much further along. Expectations kill joy… for sure. In the last procedure, the one that Levi had on the 17th, the Doctor saw no improvement whatsoever. The section of the trachea is just not healing. He didn’t understand how after steroids and anti-inflammatory antibiotics, things could look so the same. He said it looked like he had just had surgery. He will be checked again the first week of December, after that, if things don’t look any different we aren’t sure what plan B will be. <br />For those of you who have faithfully prayed for the boys, I ask that you will continue to pray, please! For complete healing for Levi’s airway. That God will restore him. For wisdom for the Doctors and us, we don’t know what to do! We are so thankful for the hope that we have and that HE is in control. Levi has done so well going back to the hospital time after time, we are so thankful for that! Beyond thankful… we couldn’t have continued with this process if it wasn’t so. We hide surprises for him to find every time we take him back. He goes into the OR with a smile and excited to see what he will find. I need to learn from him! <br />Again, thank you all for your prayers. We love you all and could not have made it this far without your support. Happy thanksgiving!!!Rochelle Rayhttp://www.blogger.com/profile/14413330120049807273noreply@blogger.com1tag:blogger.com,1999:blog-6281878767760898630.post-92136788604346965152011-11-13T12:34:00.001-08:002011-11-13T12:34:34.840-08:00November 2 procedureAh, a long and overdo update… so sorry! I know a lot of you are on facebook and so you know how things are going. But for those of you who are not, I apologize. Levi had his surgical procedure on November 2, they went in and removed the stent that had been there for 6 weeks. It was completely covered in scar tissue, to the point where the doctor couldn’t even see it. Removing it did a lot of damage to his airway, it was very painful for him. I’m afraid that Doctors and nurses are now back to being evil people who just want to hurt him (in Levi’s eyes anyway). We were at Costco yesterday and a lady came up to us and Levi had a big smile on his face until she said she was a nurse… I couldn’t even get him to look up after that! Anyway, his airway was very irritated, very inflamed and just really torn up after the procedure. He did a round of steroids and two antibiotics hoping to help things calm down. <br />We have our next two scopes already scheduled. The first one is this Wednesday and then on the 30th. He wants to do another one two weeks after that and then take a long brake. After that he will check his airway again and maybe talk about removing the trach. The reason why we are going to have to wait so much longer is because of how bad his airway looked.<br />I’ve been meaning to write this update since our last appointment but it’s just been really hard to process all this information. This is just all very discouraging for me and I just feel like this is never going to end… the words that I’ve been hearing for almost 4 years now are really dragging me down. <br />On the other hand, Levi and Jesse are doing great! They are happy and active, smart and joyful. They are both super excited about turning 4, they talk about it all the time! <br />Please keep the prayers coming, we need healing… it makes me sick having to watch him go through all this and being put under so often… I wish there was a way around it…Rochelle Rayhttp://www.blogger.com/profile/14413330120049807273noreply@blogger.com0tag:blogger.com,1999:blog-6281878767760898630.post-88492527227508348552011-10-06T09:29:00.000-07:002011-10-06T09:55:39.509-07:00Learning to let goYesterday's procedure went very well, thank you all for your prayers! Levi could not have done better! He was actually waving at medical people as he was being carried away to the OR. When we first got there he was saying that Doctors and nurses were bad people and they would hurt him, but as we were leaving he said that he met the good nurses and Doctors today... this was all thanks to prayer and a really good idea that I think was heaven sent. Every time that I would start to detect fear in Levi's eyes, he would find a small prize! And we would remind him that special things happen at the hospital, and even though a really, really bad thing happened to him(in his mind surgery was a terrible thing!) we now look for special things and surprises. SO, in the OR there was a superman waiting for him. By the way, he is really hard to find! My poor mother in law went to 8 different stores looking for him, I had already gone to a couple and finally it was Mister who found him. Unfortunately it had to be him since Levi had been talking about wanting one 'weelly bad'... I think we would all agree that it was worth it! The anesthesiologist told me that he fell asleep happy watching spiderman on youtube. <br />So, the Doctor saw healing around the graft. He isn't sure if the graft itself is healing but if everything around it heals, it could hold it up and be an okay airway. We go back in 4 weeks to remove the stent, a few weeks after that will be the real test to see if everything stays in place...<br />His airway in general was very swollen, so I am putting him back on all his supplements and going back on a very strict anti-inflammatory diet. Hopefully it will help. <br />This is all taking so much longer than we thought, we were wanting to take him to the ocean to celebrate this month. Also, there are two spots for them at mustard seed preschool. They can not wait to start! We are now considering not waiting till Levi gets his trach out for them to start.<br />I know that I just need to let go and be okay with Gods path and timing, fighting it all along the way does me NO good whatsoever. But my goodness it's been hard! It goes against my personality big time. Our lives are up in the way with all these unknowns... <br />Thank you all so much for your prayers!Rochelle Rayhttp://www.blogger.com/profile/14413330120049807273noreply@blogger.com1tag:blogger.com,1999:blog-6281878767760898630.post-82138528964385564882011-09-22T05:16:00.000-07:002011-09-22T05:18:39.238-07:00not what we were expectingWell, this time it is just taking me longer to process the information that we got at the last procedure. I decided to go ahead and let you all know since I still haven’t been able to accept it completely!<br />First of all, thank you all for your prayers! Levi did incredible… I got this idea to hide dinosaurs for him to find and I would tell him that the hospital could be a special place. He had so much fear and terror last time and when I would even mention the word hospital or doctor, he would almost start to cry! So, the dinosaurs were perfect. The anesthesiologist that carried him to the OR could not have done a better job, it was liked we had practiced it all! It was a night and day difference from last time. BUT, the other thing that was night and day difference was what the Doctor saw.<br /> The part that had already started to heal at the last procedure looked good. But the other part of the graft had collapsed. This means his airway is half the size that it should be. If all this is is a major setback, then we are very disappointed. The Doctor was so shocked! He said that he was already getting excited about getting to tell us that the next procedure would be the beginning of the end and that we could start capping the trach(plugging it so he could use his mouth and nose to breathe… the last step). But instead he had to put back another stent in to try and save the graft, so that it can heal in the shape of an airway. When he first came back to tell us this, I wanted to just have a meltdown. The thought about having a stent in for 4-6 weeks was terrible. Remember, with this he could barely swallow his own saliva! But thankfully the Doctor thought of a different type of stent, it’s a hallow tube instead of a plug so it hasn’t bothered Levi. It was a big relief when we came home that night and Levi was able to eat.<br />So, we wait two more weeks and have to go back again to see if things are healing properly. The stent is somewhat see through. Unfortunately this is going to be a lot longer than we expected and hoped for. And of course, there is a possibility that he will need a second major surgery. Honestly I can’t even imagine having to go through with it.<br />It’s so hard to not be able to see light at the end of the tunnel, but for me it’s even harder to see light and have it taken away. I know that God wants me to rely on Him and to trust that He is in control. Of course I had all kinds of plans in my mind and I needed the timing to be perfect with no setbacks. Levi and Jesse have been talking about going to the ocean when Levi could swim like a fish, like nemo. We were hoping that we would all get to go before it got to cold. Mexico is ALWAYS on my heart. I try not to talk about it too much, and I never want to sound ungrateful for TN and what God has done here. We really want to go again for Christmas and ‘the plan’ had been to stay a little longer this time. Again, God is continuously teaching me not to make my own plans… a hard lesson. <br />Please do pray for healing for Levi’s airway… for God to show us his hand in all of this. Thank youRochelle Rayhttp://www.blogger.com/profile/14413330120049807273noreply@blogger.com1tag:blogger.com,1999:blog-6281878767760898630.post-24415742882547819442011-09-11T06:09:00.000-07:002011-09-11T06:10:12.898-07:00The next stepThank you all so much for your prayers for Levi and our family! Those of you that are on facebook know that Wednesday’s procedure went well. We got there and Levi started getting a little nervous and was just uneasy. He was doing pretty good really until the moment I started taking his shoes off…. My poor baby was terrified! I have never seen him so hysterical, but really, if I thought that I was getting ready to go through the same thing again, I would have been doing the same thing! There is this miracle drug that they always have offered but that we had never needed. We had to wait to give it to him about 15 minutes before they took him back. Thankfully, everyone was not only on time but actually ahead of time! There was no calming him down but once he got that medicine… well… he was pretty happy! He did get a little nervous when he looked up and there were 10 medical people surrounding him. He was scheduled to go back at 3:15 but by 3:00 we were done! It was amazing. The doctor said everything looked great and even better than he expected. He wanted to see the rib graft still be white, because the stent was there there was really no room for it to heal. A yellow color would have been really bad, it would have meant that the graft was ‘dead’. But instead, he saw a little bit of red going through the back, and that meant that blood was starting to flow through it! The other one was nice and white. It felt so good to see the Doctor walking in the waiting room with a big smile! He did really well waking up and by 4:20 we were on our way home! <br />Immediately after surgery we noticed an enormous difference with his swallowing. He has been doing incredible! He was only a couple ounces lighter when they weighed him at the hospital(that was an answer to prayer and the only way I was going to keep the nutritionist off my back!), but these last couple of days he was been eating better than he ever has before! He also has started talking again, although he will only whisper. I don’t know if he doesn’t realize that he can talk louder, or if the fact that he’d been unable to make any sounds for three weeks made him forget how to speak in more than just a whisper. Anyway, it’s good that he’s talking and maybe once we start speech therapy he will start speaking up!<br />We already have our next two procedures scheduled, this Thursday at 4 pm and then the 28th at the same time. The Doctor wants to see continued healing and make sure that everything is moving in the right direction. And they will be removing the new scar tissue that shows up. They use a laser to remove it and it’s not very invasive.<br />Thank you all so much for your prayers! It’s hard to believe that we are so close to being free from the trach!!!Rochelle Rayhttp://www.blogger.com/profile/14413330120049807273noreply@blogger.com0tag:blogger.com,1999:blog-6281878767760898630.post-30134649862324682712011-09-06T16:41:00.000-07:002011-09-06T16:50:55.715-07:00Tomorrow is a big, we have to be at Vanderbilt children's at 1:15. Its the next step to getting the trach out. They will be removing the stent that is in his upper airway. This is when we find out if the surgery was a success. Hopefully after that, he will be able to eat a lot better and we will start hearing his voice again. I have missed it so, so much! They will also be able to check and see how everything is healing. It most likely will still be a while before the actual trach comes out, but after this waiting wont be as bad! <br />Thank you all so much for your prayers and encouragement, we have also been so blessed by the meals that we've been getting! These last two weeks have been tiring, it's so great to have so many amazing people lifting us up! <br />Please be praying for peace over Levi, every time we even mention the hospital or doctors he gets very scared and sad. <br />Love you all!Rochelle Rayhttp://www.blogger.com/profile/14413330120049807273noreply@blogger.com0tag:blogger.com,1999:blog-6281878767760898630.post-33419327433348436972011-09-01T15:23:00.000-07:002011-09-01T15:25:51.820-07:00Hey Everyone, I know I left you all hanging after the last update, sorry! We went to the pediatrician on Monday morning and it could not have gone better! Thank you all so much for your prayers and for your encouraging comments. Monday morning I had such a peace, I was prepared with a really good case but I didn’t even really need it! I had felt so attacked the days before and was really exhausted. We were there for less than an hour and the Pediatrician pretty much just said that she knew that I would take care of Levi and that I would do what was best for him. She said that she totally trusted my judgment and she had told that to the Doctor on call that was so rude. So, she agreed that there was no point in putting Levi through any more than is necessary. He was eating a little bit then and drinking very well. Every day he improves a little, he’s not eating much, but enough to keep him very active. He also has a little cold so that doesn’t help. This all reminds me of the days when we first left the hospital. Not much sleep do to needing to suction very often, difficulty getting enough food in the boys… although one major difference and what makes all this really hard is the fact that it now involves are whole family. The boys felt a lot of pain the first months of their lives. It was an incredible battle. But they didn't understand what was going on. They could be comforted with a good swaddling blanket and their pacifiers. They didn't know any different. We are so blessed that the boys are not used to pain and fear and that they have been so healthy and happy and active. So having to go through this now has been really hard on both of them. We know it’s only for a season and once this season is over, our lives are going to be so incredibly blessed, even more so than it already has been!!! I cannot wait…
<br />Next week, on the 7th at 3:15 pm Levi will be getting the stent out. After this, things should improve a ton! Right now this is blocking his airway and touching his vocal cords, which is why he can’t speak or even make any noise, it’s also why he is having so much difficulty eating. Every time he swallows he can feel the stent stuck in his throat. Also, when the stent is removed we will know whether the surgery was a success or not. After that I’m not really sure what’s next. It seems like with my friends son who had this same surgery, it was a couple of procedures later that he actually got the trach out completely. With a couple of weeks in between each procedure. I haven’t really asked the Doctor because I know that every case is different. I’m going to be so excited when he says it’s time to pull it out!!!
<br />Today I was listening to the boys play… well, it was more like Jesse talking nonstop asking and answering his own questions. But he would say something and then interpret what Levi was signing… for himself! it was really cute! I miss hearing Levi’s voice so, so much. We have been so blessed and have never taken it for granted. The fact that he has been communicating so well for so long is such a miracle!
<br />The cut in his chest and above his trach are healing very well. He doesn’t complain about pain anymore ether, it’s made life a lot easier on both the boys since they are able to play a little rougher. The risk of aspirating food and liquids into Levi’s lungs will increase every day. Because the swelling is going down and the way the stent is in the way of the vocal cords. But we are trusting that everything will be fine and we are counting down the days for this next big step. Thank you all so much for being a part of this journey. We are blessed…
<br />Rochelle Rayhttp://www.blogger.com/profile/14413330120049807273noreply@blogger.com1tag:blogger.com,1999:blog-6281878767760898630.post-74270316514988993892011-08-28T19:41:00.000-07:002011-08-28T19:42:35.175-07:00Yesterday was plain awfulIt has been a crazy 48 hr. I can’t even write about it too much because I am to tired and I get to angry by reliving it all… let me start with: We came home on Friday, Levi went from barely being able to sit up in a hospital bed to 5 minutes after being home, he was running and playing. I had to clean around his trach and at the hospital it was a three person job because he would get so angry and upset. It took me two seconds and he was fine. He has done SOOOO much better since coming home. The drama began yesterday morning when we found that his feeding tube was out. We aren’t really sure exactly at what time he pulled it but after trying to get him to drink some milk, we decided to go to the emergency room to have them put it back in. Well, that is when the nightmare began. After 7 hours and two failed attempts to get the tube in the right spot, they realized that they were shoving all the tubing in and it was all coiled right were his stent is… where he JUST had surgery. Their solution was to send him to the adult ER to have radiology try to put it in. When I said I wasn’t going to wait another 7 hours for that they wanted to re-admit him into the hospital to get an IV… I explained that he was able to drink plenty of water and I could give him pedia-light . I had promised Levi after the second time that they did the nose tube and we were getting an x-ray, that we were done. Several nurses have told me how incredibly painful it is to have one, and for him with a freshly cut airway and a stent stuck in his throat and a week like he had had… well, it was awful. I seriously cannot remember the last time I was quite as furious as I was yesterday. I was being treated like an irresponsible idiot. I knew that it was not necessary to stay at the hospital, I’m so glad that I didn’t allow it because once he got home, he was able to eat a little bit and he continued drinking plenty of liquids. The Doctor on call spoke with Brian and shared her concerns, and tonight another Doctor called to check on him. While we were in the ER, Brian spoke with the ENT that did the surgery and he was pretty upset about the fact that they had put the tube in the wrong way twice. He pretty much said to just make sure that he wasn’t dehydrated.
<br />I am so tired and overwhelmed, thankful that Levi is doing so well and he is so happy. But putting him through what we did yesterday just really pushed me over the edge. He is healing, playing, being silly, active and energetic. He can’t talk and he does have a hard time swallowing. But every day he gets better at it. I’m giving him protein powder, mineral supplements, multi-vitamin, vitamin C, herbal vitamin, very fattening coconut milk… I hate that I feel like I have to defend what I’m doing for my son and I really hate it when people act like they know what’s best and I’m just a crazy mom… really rubs me the wrong way! So, now I need to take deep breaths and rest… I will try not to lose it tomorrow at the pediatricians office, I don’t think I will, I really like her… I know that after reading this you all will be praying for us, thank you!
<br />Rochelle Rayhttp://www.blogger.com/profile/14413330120049807273noreply@blogger.com6tag:blogger.com,1999:blog-6281878767760898630.post-6468295693983188782011-08-24T21:33:00.000-07:002011-08-24T21:50:07.765-07:00Next stepsOkay, today Levi passed his swallow test, thank you Lord!!! He still isn't really drinking. It's a combination of fear, pain and just weirdness that keeps him from wanting to. But he can and we are thankful. The doctor came by and was explaining how because there is a stent in his swollen airway, there are still several things that can go wrong. As the swelling goes down, it is not uncommon for kids to start aspirating (food going into lungs when swallowing). The stent will stay for two weeks, it's in his new airway, so he still can not breathe without his trach. Even after they pull that out, there still may have to be several other little surgerys to remove scaring from the surgery. It probably will be months before he is trach free. But, when the stent comes out, things should be much better. It's a slow process, hopefully the hardest part is behind us... We're pretty tired, all of us!
<br />Jesse has a infection in his ear and is still couphing some. He wants us all home but is doing so good with all the craziness! Levi needs to start eating for us to go home without a tube in his nose. He also needs to sit up, he's moving in his bed better, but he will not sit up. He won't speak a single word eather. I miss my healthy, energetic, smart Alec boy so much! Brian and I are good, tired of constantly rotating between hospital and home, jesse and Levi... But God is good!Rochelle Rayhttp://www.blogger.com/profile/14413330120049807273noreply@blogger.com0tag:blogger.com,1999:blog-6281878767760898630.post-24461907252218819082011-08-22T06:44:00.001-07:002011-08-22T06:44:57.678-07:00Levi had a good day yesterday; he was even a little bit silly when I first got there! They were unable to take the drain tube out from his neck though; they may try again this morning. At around noon, we got him out of bed and cleaned him up a bit. He was so, so scared to move and cried when we did this. But after a while he settled and took a long nap on me. It’s been hard to move him, even the slightest change pushes him over the edge. The main problem he’s having is that he is very jumpy in his sleep. He will be sound asleep and all of a sudden have that falling feeling and get so scared! Sometimes he is able to just go back to sleep if we apply pressure to him, but we have to be right there. He did this all day but Brian said that he did a little bit better during the night. They had given him more pain medicine to try and help with this but it didn’t, instead it made him super itchy all over At like 9 last night they tried some anxiety medicine.
<br />Well, even though I got to come home last night I didn’t get to sleep. Jesse-boo coughed nonstop all night long. Somebody at some point today will be taking him to the pediatrician this morning. Brenda and Leland are at the hospital to relieve Brian and to hold my stop so that I didn’t have to rush Jesse. Thank you for your continued prayers… please keep them coming!
<br />Rochelle Rayhttp://www.blogger.com/profile/14413330120049807273noreply@blogger.com0tag:blogger.com,1999:blog-6281878767760898630.post-6212109595245337482011-08-21T05:49:00.000-07:002011-08-21T05:50:00.746-07:00I got to come home as sleep last again. I just talked to Brian and he said that Levi was a little more like himself staring at like at 3 am. Yesterday he was so, so sad. I only saw three little smiles all day. He gets so sad anytime anyone touches him, other than family. It kills me to see fear in his eyes. Yesterday morning they pulled out his chest tube and this morning they will pull the one on his neck (drain tube). I hope I’m not there for that! Tuesday will be a very big day, they will take him down to the OR and scope him to see how things are healing. Then they will take him to radiology to have a suck-swallow test to see if he can start eating. In the OR they will do a trache change and they said that it’s a big deal… I’m not really sure why. One of the Doctors said that he may have temporarily lost his ability to swallow because of the tube that is inside his airway, it is partly on his vocal cords, so they can not close up when he swallows. So he would aspirate into his lungs. I PRAY and ask that you all will as well that it is not the case with Levi. He is so, so sad and I feel like if he can have water when he asks it would make him happier. Otherwise I’m not sure what will happen, they did mention us having to go home with the feeding tube that is in his nose. I can’t imagine having to keep all food and liquids away from Levi, I mean, Brian and I can drink and eat when he can’t see us, but Jesse? Anyway, we will cross that bridge when we get to it.
<br />Brian took Jesse to see Levi last night. I was worried about Jesse and thought that it would make Levi happy to see brother. Well, Jesse did really well. He had millions of questions about everything and wanted to bring Levi home and didn’t understand why Levi wasn’t talking and playing. As we were leaving he informed me that when he was a tiny little baby he had to sleep in a hospital bed and it made him a little nervous. He said that he thought we should just bring Levi with us…
<br />I’m going to keep this short since I haven’t written an update in Spanish, thank you all for your prayers. We love you all!
<br />Rochelle Rayhttp://www.blogger.com/profile/14413330120049807273noreply@blogger.com0tag:blogger.com,1999:blog-6281878767760898630.post-69274975069406949602011-08-20T20:09:00.000-07:002011-08-20T20:10:21.743-07:00From my moms update"Sorrowful, yet always rejoicing" (2 Corinthians 6:10).
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<br />Sorrow was beautiful, but his beauty was the beauty of the moonlight shining through the leafy branches of the trees in the woods. His gentle light made little pools of silver here and there on the soft green moss of the forest floor. And when he sang, his song was like the low, sweet calls of the nightingale, and in his eyes was the un-expectant gaze of someone who has ceased to look for coming gladness. He could weep in tender sympathy with those who weep, but to rejoice with those who rejoice was unknown to him.
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<br />Joy was beautiful, too, but hers was the radiant beauty of a summer morning. Her eyes still held the happy laughter of childhood, and her hair glistened with the sunshine's kiss. When she sang, her voice soared upward like a skylark's, and her steps were the march of a conqueror who has never known defeat. She could rejoice with anyone who rejoices, but to weep with those who weep was unknown to her.
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<br />Sorrow longingly said, "We can never be united as one. " "No, never," responded Joy, with eyes misting as she spoke, "for my path lies through the sunlit meadows, the sweetest roses bloom when I arrive, and songbirds await my coming to sing their most joyous melodies."
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<br />"Yes, my path, said Sorrow, turning slowly away, "leads through the dark forest, and moon-flowers, which open only at night, will fill my hands. Yet the sweetest of all earthly songs--the love song of the night--will be mine. So farewell, dear Joy, farewell."
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<br />Yet even as Sorrow spoke, he and Joy became aware of someone standing beside them. In spite of the dim light, they sensed a kingly Presence, and suddenly a great and holy awe overwhelmed them. They then sank to their knees before Him.
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<br />"I see Him as the King of Joy," whispered Sorrow, "for on His head are many crowns, and the nail-prints in His hands and feet are the scars of a great victory. And before Him all my sorrow is melting away into deathless love and gladness. I now give myself to Him forever."
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<br />"No, Sorrow," said Joy softly, "for I see Him as the King of Sorrow, and the crown on His head is a crown of thorns, and the nail-prints in His hands and feet are the scars of terrible agony. I also give myself to Him forever, for sorrow with Him must be sweeter than any joy I have ever known."
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<br />"Then we are one in Him," they cried in gladness, "for no one but He could unite Joy and Sorrow." Therefore they walked hand in hand into the world, to follow Him through storms and sunshine, through winter's severe cold and the warmth of summer's gladness, and to be "sorrowful, yet always rejoicing."
<br /> Rochelle Rayhttp://www.blogger.com/profile/14413330120049807273noreply@blogger.com1tag:blogger.com,1999:blog-6281878767760898630.post-23561113937775722842011-08-20T05:01:00.001-07:002011-08-20T05:01:36.306-07:00Hello everyone, yesterday afternoon Brian came to the hospital to replace me. I went to pick up Jesse who by the way, is doing great! He has been having a wonderful time thanks to BeBe, Mister, his aunts and some of our friends. It is such a burden lifted off of us to know that he is very well taken care of. We went to eat, came home, took a shower and went straight to bed. I called Brian right before and he said that it had gotten kinda rough right after I left. Dr. Wootten, the surgeon stopped by to check on Levi’s draining tubes. He wasn’t able to check the chest tube because the neck one sent him way over the edge. But after that he finally fell asleep and the nurse said that she was going to let him rest for the night. Such a good thing because every time they mess with him, he gets so upset and it’s hard to calm him down.
<br />Thursday was a very long day, we got there at 10:30 and they took us back pretty soon after. Everything seemed to be moving a long perfectly, we spoke to the Doctor and signed tons of paper work and then we waited, and waited and waited. It was scheduled to start at 12:30 but the OR room was occupied until 2:30! That part was hard because you prepare yourself for so much time and we were so tired. I, by the grace of God, held it together long enough for Levi to be out of sight. Once the surgery started, the time went by fast. They were great about updating us every hour, really all they said was “he’s doing great! Call you in a hour”. Great words to hear when your baby is in surgery. It was done before 8 and before 9 pm, we were with him in the PICU… very, very unprepared from that point on. We thought he was going to be completely sedated that night but instead we got there and he was kicking and crying. Kinda how he is after his scopes. Only this time, he had a very, very swore throat, two drain tubes, two iv’s, leads all over, I was not able to pick him up and rock him, he was thirsty but can drink nothing… it was awful to say the least. I can’t even write about it without getting light headed. That night he was very upset, every time he wanted something and I had to say no, he would cover his face with his blankie and cry. He was a little more resolved all day yesterday.
<br />Well, I have to go, Jesse is on my lap and its very hard to type! Thank you all so very much for the encouraging words and prayers. We love you!
<br />Rochelle Rayhttp://www.blogger.com/profile/14413330120049807273noreply@blogger.com0tag:blogger.com,1999:blog-6281878767760898630.post-90375536473467827592011-08-18T20:19:00.000-07:002011-08-18T20:30:35.158-07:00Thank you all so much for your prayers and words of encouragement. The Surgery was a little over 4 hr, when the Doctor came out he had a big smile. He said everything went perfect. He used part of his rib to graft his airway open. We thought that he was going to be completely cedaded tonight, so we were not prepared to find him how we did. For about an hour he was very miserable. And it's so hard because he keeps signing what he wants and everytime I tell him no, he covers his face with his blanky and cries. He's calmer now but still frustrated and in pain. Thank you so much for your prayersRochelle Rayhttp://www.blogger.com/profile/14413330120049807273noreply@blogger.com0