This 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.
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!
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)….
Hopefully the next update will be from Mexico! Love you all and Merry Christmas!!!

Update

Hey 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…
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.
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.
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?
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!
Love you all and will let you know how Levi’s airway and esophagus look…

Please pray for Jesse

Prayers 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.
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.
Thank you all so much for praying!

happy 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).
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.
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.
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!
Again, thank you all for your prayers. We love you all and could not have made it this far without your support. Happy thanksgiving!!!

November 2 procedure

Ah, 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.
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.
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.
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!
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…

Learning to let go

Yesterday'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.
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...
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.
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.
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...
Thank you all so much for your prayers!

not what we were expecting

Well, 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!
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.
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.
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.
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.
Please do pray for healing for Levi’s airway… for God to show us his hand in all of this. Thank you

The next step

Thank 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!
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!
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.
Thank you all so much for your prayers! It’s hard to believe that we are so close to being free from the trach!!!

Tomorrow 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!
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!
Please be praying for peace over Levi, every time we even mention the hospital or doctors he gets very scared and sad.
Love you all!

Hey 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…
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!!!
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!
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…

Yesterday was plain awful

It 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.
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!

Next steps

Okay, 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!
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!

Levi 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.
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!

I 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.
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…
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!

From my moms update

"Sorrowful, yet always rejoicing" (2 Corinthians 6:10).

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.

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.

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."

"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."

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.

"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."

"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."

"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."

Hello 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.
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.
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!

Thank 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 prayers

Jesse-boo and the rest of us

So, I felt the need to try and explain to the boys as best I could (or should I say, in a way that they could understand) about the process and what is getting ready to happen. Levi is very excited about getting his trache out! Every time we talk about it, he adds ‘and I’m going to swim like Nemo!’ He is having a hard time with the Doctor part though. He’s always been so, so good with Doctors but I have been unable to convince him that Doctors are nice… he keeps saying that he doesn’t like Doctors and he wanted Miss Jennifer(his physical therapist) to do the surgery instead because, he says he does like her. Anyway, I realized that I needed to back off because in my need to prepare them, I was making them anxious.
Jesse is having a harder time with all this. He’s a lot like Brian and doesn’t do well with change. He likes his ‘whole family a lot’(is what he always says) and he doesn’t like it when I say that Levi will be at the hospital and he will be with BeBe and Mister… he keeps saying that he needs to be at the hospital too because he needs surgery and healing also. Like I said before, in preparing them he got really anxious. So now that I’ve baked of, I’m realizing that there are some things that they as well as us, will have to deal with as it comes. I know that Jesse will be okay. He will be surrounded by people that he loves and I’m confident that they will follow my instructions to not worry about discipline and go ahead and spoil him as much as they want… I NEED THAT! I have such peace in knowing that he will be happy and well taken care of. It’s hard to have two that are so, so close and literally do everything together! Jesse will not be able to visit until Levi is out of the PICU(pediatric Intensive Care Unit) and he most likely will be there for the majority of the time. Of course, I don’t really think I would want him to see him in that state.
And the rest of us? Well, we’re good! Brian has been incredibly busy at work. He really enjoys it and does such an amazing job. He gets so much time to listen to great speakers and awesome worship music (IPod) so he’s ready! He has so much Faith, and he is still praying/believing for a miracle. He will have to work some this week, but hopefully he can spend the night every other night with Levi and that way I could get some sleep (maybe!) and stay with Jesse. We are so thankful for all of you that are offering to help and lifting our arms up… your prayers and encouragement mean so much to us! It’s truly humbling to know that so many are burdened for our sons and family. I’ve been kinda all over the place! These last couple of days I have felt the need to clean… really, really clean! I know it’s probably going to be a very exhausting week and if and when I do come home, I want to be able to rest and just focus on Jess. The week before we had the privilege of seeing some of my favorite coworkers, the Stearns and be encouraged by them. Before that, when the boys were sick, I had lots of battles to fight in my mind and spirit and even from the moment that we found out that he was going to be having surgery… it’s just been crazy! But God is faithful and I believe with all my heart that He truly prepares us for battle, as much as we can take that is. I can see that like my babies, I can only handle so much at a time. We are praising HIM for what HE has already done and is about to do and for what HE will continue to do. Suffering is Gods language… I wouldn’t have chosen to learn this, but I am thankful that HIS Grace is there. I also can see how we are so, SO blessed! And compared to what other people that we know and love, this really is nothing! And we are resting in that Gods got our back. May His will be done in our lives and may we glorify HIM through it all… and to you all, you are a part of this too! Thank you for walking with us… Love

It's actually happening!!!

I can’t believe I’m actually writing this (and at the same time I can’t believe I’ve waited till now to write it!). I imagine that most of you already know this… for the few of you that don’t, I do apologize! I’ve had such a mixture of emotions that kinda come like waves… maybe that’s why I couldn’t sit down and write? Anyway, in two days Levi is having major airway reconstructive surgery… yes… two days…. For three and a half years we have waited for this, sometimes patiently and sometimes not so patiently. We have hoped for it, believed for it and now, it’s happening in two days!
About three weeks ago, Brian got back from a mission trip to the Dominican Republic and brought back lots of great stories and also a bad cold… that you gave to Jesse and yup, you guessed right, Levi got it too. I trusted that God was in control and He is good always, but I would be lying if I said I wasn’t a little nervous at times. Well, it was more like panicked! It didn’t help my battle that I didn’t sleep for an entire week, mostly because of Jesse, Levi was only bad for a couple of days and then he bounced right back.
Most likely they are going to take part of his rib and graft is airway open, place a tube inside to keep it all open and allow it to heal for about two weeks. When they take this tube out, we will know if the surgery was a success or not… if it doesn’t collapse it was a success, if it does he needs to do it all over again. If everything goes perfectly smooth, it’s a week at the hospital at least. He will keep his trache for the entire healing process that hopefully won’t be more than two months. After the surgery, he gets scoped kinda like before about every two weeks for about three months. My friend Stephanie’s son, Braden had this surgery back in October and that is where I’m basing this information from. Everything went perfect with them, and I do realize that it could be very different for us, also the surgeon has explained that he could change his mind during surgery and decide to do a different one. Like instead of opening his airway, he could cut and remove the entire section that is scared. That would be a longer stay at the hospital but overall, he would have his trache out sooner. Anyway, we are prepared for whatever road God has set before us.
We are so honored and humbled to be lifted up by so many… we truly are grateful that we don’t walk this road alone. I can’t wait to celebrate with you all! It was been a long trial. God has definitely been so good and faithful and we realize that it is only by His Grace and Mercy that Levi has done as well as he has. Imagining our lives without this artificial airway brings me to tears! And although I would love to skip this process, I realize that God has a purpose in everything that we go through. We WILL keep you all updated! Thank you so much for your support, encouragement and prayers, may the LORD be glorified!!!

Prayers please...

I’m such a bad blogger! I love following blogs but I am just not good at keeping mine updated. Sometimes I’m almost done with a project and I think “if I were a true blogger I would have taken pictures every step of the way to blog about it”! Ahhh! Oh well, I will try harder…

Levi is going for his 6^th or 7^th bronchoscope tomorrow… I can’t remember how many he’s had. This is the first one that the actual surgeon will do though. Dr Wooten. We met him two months ago and really liked him, he is very confident and that is always good when he may be doing a MAJOR airway reconstructive surgery on your baby boy. Of course, like always, we appreciate your prayers. It’s going to be a long day tomorrow since we couldn’t get an appointment for the early morning like we usually do. It’s not until 3:45! He must stot all solid foods at 5am… and all clear liquids by 11:45. Thankfully my wonderful in laws will take Jesse in the morning so that Levi doesn’t have to be around anyone eating. I’m thinking that once the clear liquids stop, I’ll take him to the library to hopefully distract him.

Yesterday I was reading about Jonathan, King Saul’s son. He knew that God could accomplish great things and have victory against all odds, victory in a war with only a few men against many. If HE chose to… I feel that way, God can… if this is the time that He has chosen.

The boys have been doing so good! They are amazing… they spent an entire week with my in-laws while I was in Mexico and Brian was working like crazy to get ready for Easter Sunday. I had a wonderful time, I got to share at the Women’s Retreat and see a lot of my loved ones. While I was gone, the boys got a jump start to potty training, or should I say a very late start! Again, wonderful in-laws!!! They are doing really well with it and I’m starting to feel like I have potty trained boys… the things they say… I wish I could share!

Jesse talks non-stop, from the moment he is awake till the moment I make him go to bed. He asks millions of questions about everything. I heard once that it is important to give answers to kids like this, it makes them smarter when they are older. I try! It’s really funny and great, exhausting at times but I wouldn’t trade it for anything! He is a sweet and loving little boy and just so funny! Levi asks questions too, only he actually wants to understand the answer. And the whole child like faith is not working with him! He wants to understand and if it doesn’t make sense to him, he gets upset! For instance, we were talking about how Jesus can now live in our hearts(because of Easter, there have been many questions about ‘baby Jesus’). Well, when I told Levi this he quickly said ‘no He can’t!’ I tried to explain and told him that He lived in my heart, he then said ‘where? Let me see him!’ I tried to explain a little better and he said, ‘my food is inside me, Jesus doesn’t fit!’

I am so blessed…

Liquid dishwasher detergent

So, pretty much all last year I was trying to figure out what was causing my boys eczema to flare up. Eczema is a crazy thing, it's an allergic reaction to something... finding that 'something' can be overwhelming and at times feel impossible. I have read HUNDREDS of different natural ways to get rid of this condition. Somewhere along the way I ran across an article about a girl who discovered that her eczema was caused by the dishwasher soap she was using for her dishes... crazy!!! So because I am willing to try stuff and this sounded very easy to do, I decided to make my own dishwasher detergent. Although it didn't really make a difference with the boys skin, I really, really like it! It's easy, inexpensive and works incredible. It's very 'green'... I really don't like how that sounds! Really, I do care about the environment but it is definitely not my first concern(anything green I do is undone because of the fact that my boys are not potty trained). If it's better for my family, that is why I do these things :)

Here's the recipe:

1 1/2 cups water 1/2 cup distilled white vinegar

1/4 cup liquid castile soap
2 tablespoons pure lemon juice (not concentrate)
2 tablespoons salt
1 tablespoon washing soda
**10-15 drops antibacterial essential oil, if using an unscented castile

extra white vinegar for the rinse cycle

In a small saucepan, combine water and vinegar over medium heat. Bring to just boiling and then reduce to low heat. Add each additional ingredient, one at a time, whisking as you go. Make sure everything is dissolved before removing from heat.

Allow to cool and then transfer to a storage container. When completely cooled the solution will separate into two layers, so shake it up real good before use.





I use 2-3 tablespoons per load. I also fill the machine’s rinse indicator with white vinegar – a very important step. Don’t skip this part! It will keep the dished ‘soap-scum-free’ and extra sparkle.

Lie to me

It's been a year since we made the very difficult decision to take Levi off of his medications. I feel bad that I haven't blogged about it every step of the way. I love reading blogs, but for some reason I feel like I can't blog because I may offend someone. I can be pretty blunt at times. BUT, I have decided, with the encouragement of some friends, that I will let you in on whats been going on here:)

What led to my almost nervous brake down was a meeting we had with Levi's ENT(ear nose and throat) Doctor describing the path to Levi's recovery from surgery. Now I know that they always feel the need to tell you the worst case scenario, I get that. But this was beyond that, it was a dark, back whole that we were going to have to walk into. I know that life experiences make you stronger, but when it came down to it, I couldn't imagine having to 'walk through the valley of shadow of death' again... and that is exactly how I felt. To top it off Levi's gastro-intestinal Doctor put him on a steroid that we were to mix with FIVE packs of splenda twice a day... Yes, that's 10 packs of splenda a day for a two year old, how long? Oh, we would have his esophagus checked again in 6 months and see if it was better, if not we could keep him on it longer... I still get a little furious when I think back on this...

The crazy thing about Levi's treatment is that on the outside he looked good. His reflux was controlled for the most part(any time it wasn't, they would just up his dose of medication or add another one when they couldn't), we had a nice steroid cream to keep both of their eczema under control, a great high calorie drink that was helping him get nice and chubby... but still, every time he would have his airway scoped it would look exactly the same as it had when he first got his trache. Red, swollen and inflamed. My baby could not eat a bite of baby food without gagging at age two.

So, what I have learned about medication and steroids this past year. If you need them, you need them and they are great to have around. BUT many times it sounds like you need them and you really don't. They lie to your body and tell you that everything is fine and on the outside everything is fine. But it's a double edged sworded that is both helping you and killing you! When the babies were in the NICU we understood this, it was what we had to do to save their lives. But why doesn't the treatment change when it isn't a life or death situation? Maybe it's because we like something fast, efficient, and something covered by insurance. We don't think about having to pay for the future consequences. And it's one thing to let yourself pay, but it's a completely different story when it's your baby that is paying the price. So, I had enough, more than enough. I realize now that it was totally God saving us from the path we were on and leading us a totally different way. The only reason we were able to make the change was because we were so fed up! And what we had coming was worse than what we had already been through!

God is so good, He brings us to such a painful place to help us change courses. And although it is so incredibly painful at times, without this we wouldn't have the courage to make any changes. This is also what I have realized, not everyone is ready for this, because you haven't been through enough to get you to the point of readiness, you may never have a need to. It may be to great of a sacrifice. For us it was more of a matter of choosing true healing, that comes from the Lord and giving up the lies that satisfy for a moment but lead to death....

I am thankful, so, so thankful and I'll tell you all about it! But hey, only if you want to listen!

Running from arrows

This morning the boys and I went to run errands. I had a ton of stops and everywhere I went I kinda had to hurry the boys along. I kept hearing Jesse tell Levi "run brother! Run from the arrows!", had no idea what he was talking about. He started asking me if we were going to have to keep running from the arrows and finally I realized, I had told them that we had to hurry because we had a lot of errands to run...

P.S. That was for you Em!