Home sweet home

It is so nice to be home. Tayton says his favorite thing about being home is movies and legos. He is eating great. His main things he wanted when he came home was a happy meal and pizza. It is so fun to see him home and for us all to be together. We are still trying to find a good schedule. I have to do therapy with him 4-5 times a day and it is really hard. It is hard to put pain on your child and to watch him cry, but at the same time you know if you don't do it, it will cause more pain and damage in the future. He knows it is good for him and he is trying his best. Yesterday we went back to the burn unit for some therapy and a check-up. We will go 2-3 times a week for now. Levi went back to work and it is hard having him gone, but I know I had to let him go back to work sometime. Tanna is having so much fun just being home and playing with all of her toys. I am trying to unpack everything and make our house feel like home. It is hard because I want it all done but at the same time I want to enjoy playing with my kids. I'm sure we will find a good balance. Thanks again for all the support. I know he wouldn't be here without all the prayers. Mike and Marilyn, thanks for all your comments. We can't wait to meet you. Sorry you had to go through this too. You are amazing people, and even though I haven't met you, you mean a great deal to me and my family. Thanks again!

Merry Christmas!

Wow, I can't believe it. After 40 days in the hospital, yes 40, we are home! That is right, we are home for Christmas. What an amazing present. We found out yesterday that we could come home, but I didn't want to say anything just in case it didn't happen. Last night me and Tanna slept at the Ronald McDonald house and we woke up and checked out. It is such an amazing place but I was happy to say our goodbyes. Then we made it up to the hospital where one little boy was so excited that santa came to the hospital. He was a little mad that he had to wait for mom and Tanna. Then we had our own little time together in his hospital room to spend Christmas morning together. So much fun!-------------------After presents, we had to do wound therapy and physical therapy. We also had to get all of his medications, then by that time we had to eat some lunch. Then we had a special surprise, they took Tayton up to the Air Med helicopter landing area. We say one helicopter land and take off then another one land. Tayton thought it was pretty neat. After that we hopped in the mini-van and drove home. Tayton couldn't wait to see his room. All he wanted to do the rest the day was play with toys. He had a blast. It was so fun to see him just be a boy again. He is getting so much better every day. I know that we still have a lot of recovery but we are all so happy to be home. Tanna is happy to sleep in her own bed. Tayton is not quite ready yet to sleep alone. Whatever he needs to feel safe right now is fine with me. I'm not even sure if I am ready to have him sleep alone. We go back for our checkup and therapy on Thursday. Then as of right now we will have therapy three times a week at the U of U. Hopefully he will continue to recover quickly. ------------ Thank you to everyone who have helped us get through this. There is no way we could have done this without all the love and support. I really believe that the Lord answered our prayers. Miracles do happen and this is the most amazing miracle in the world. My son is still here with us. Thank you again for all the prayers. Merry Christmas, this is one that will never be forgotton. We are so blessed. Welcome home Tayton, we are so proud of you. I love you most, mom!

Christmas Eve

Wow, today was so much fun. We started in physical therapy and Tayton is doing amazing. He was even able to climb a ladder a couple of steps. Then on the way back from the therapy gym he rode his tricycle, which was his new favorite thing. He continued to ride that everywhere. He got going pretty fast and you had to run to keep up with him. Also speech therapy came today and cleared him for eating!!! So that meant he got the feeding tube out. He was scared at first but he was so happy he got it out. So now we offically have no tubes, or iv's. It is so nice.

Later in the evening, my family came for a fun Christmas Eve Party. We had soup, sandwiches, and Tayton loved eating. This kid is hungry all the time now which is such an amazing sign. We had a lot of fun at our Christmas party in the burn unit waitng room. It really doesn't matter where we are, it was just so fun to be together. Tayton and Tanna got spoiled with presents and are so excited for Christmas tomorrow. Then later on in the evening we were able to take Tayton out of the hospital and we showed him the Ronald McDonald house where we have been staying. He thought it was pretty cool. We have seen so many miracles these past 5 1/2 weeks. I hope everyone has a very Merry Christmas. I know we sure will. Enjoy the time you have together. Merry Christmas!

Hard Work and a Good Reward

Tayton started the day off with dad. We got to build Legos and have lots of fun. Tayton built a helicopter with very little help. He also started physical therapy by walking all the way to the gym with a little help. It is quite the distance considering how far he has walked the past few days. While at the gym Tayton worked hard on the arm bike and got a good workout getting his hands and fingers loose. Tayton finished it off by walking all the way back to his room. After eating tons of ice cream Tayton has started getting tired of it so mom asked the doctor if Tayton could eat something else. A nice meal of smashed carrots, smashed potatoes and blended roast beef was the answer Tayton got. Tayton was in heaven, he has been wanting to eat normal food so bad. Way to go bud your making us proud.

A very special visit

Can I just start out by saying my sister is the best! She had some very special visitor come for Tayton today. He loved it so much!

First Princess Leia came into his room and talked to him. She said she had some other friends waiting for him outside. He was very excited to see them.

Here Levi is taking him to see all the special friends waiting to see him.

Family photo, minus one little four year old who was not a big fan of the Star Wars friends.

This is my favorite. Just the look in his eyes was priceless. For the first time I saw complete joy, like nothing in the world could ever be better. What an amazing moment to share with my son.

I think even the amazing staff at the burn unit even enjoyed the visit. The respiratory therapist said he had goosebumps from seeing princess Leia. ----------Thanks aunt Christa for the special visit. I don't know how in this life I can ever top this present. It was huge and brightened his day. He was so excited to show everyone how good he could walk. He took a few steps by himself. Still a bit wobbly but like Darth Vader said "The Force is strong with this one." And a very special thank you to our new friends who made this possible. I can't begin to tell you what this meant to my boy and to us. Thank you, thank you, thank you for lifting a little boys spirit. -----------Also Taytons first grade teacher came to visit. He loves her and he was a little tired when she was here, but he talked and talked about her after she left. She brought some amazing presents, and his favorite was the Christmas tree hat that sings and dances. So many fun visitors today. One special little boy!

Amazing day!

Tayton had such an amazing day. He had a visit with the speech therapist last night and they said he could start eating ice cream. He enjoyed eating it for the most part. Still pretty hard to do, but he is improving so much every day. Today he showed me how he could walk on his own. He took a few steps to me and gave me a big hug and kiss, then he turned back to sit on his bed. I must say that is the best present I could have ever asked for. It was amazing. He did so good today, and I just hope he doesn't over do it.-----------I brought Tanna down with me and it was so fun to just be together as a family. We watched movies together and Levi and Tayton put legos together. It was so fun Oh and we also switched rooms so now we have a window room. They had to move a lot of patients around but it worked out nice so now we have just a small window but just having a window makes a huge difference.---------His voice is getting better every day and he gets stronger every day. So hopefully we only have a week or two left here, but if we have to stay longer that will be fine to. I am just so happy I have my children still here. Last night was really a lot of fun for me. Even though I missed Tayton terribly, I loved watching my Tanna in her pre-school performance. She sang really good and looked so beautiful. Then after I had a nice chat with my parents about everything that happened. Then we went back to our new house and we watch Barbie, the Princess and the Popstar. We have seen that 1,000 times but last night it was special. Normally I just turn it on and go do my own thing but it was great quality time together. Tayton is pretty tired and we are ready for bed. So have a great night and enjoy the time you have with your families. Keep up the great work Tayton, we are so proud of you. We have a big surprise in store for him tomorrow. Thanks Aunt Christa!

Too busy

Sorry not much time to blog. Today I had a fun time with Tayton this morning. He went to therapy and after all the hard work got to play the wii at the end. He enjoyed it. We got back to the room and he slept. I ended up leaving to go back to Brigham City, because Tanna had a very important night. It was her preschool Christmas program. She did such a great job and she looked so beautiful. It was fun to see it. I also had a doctor apt. and my baby is so precious. I got some 3d pictures and I must say she is adorable. Tayton is doing a little better every day. Hopefully he continues that way but I need to go and get my little girl to bed. Have a great night. Love you Tayton and Tanna.

Ahhhh, back to my comfort zone

Yep thats right, we are back home in our little burn ICU. It is so nice to be back and know all my sweet nurses, doctors, therapists, and back to blue gloves and blue gowns. I don't know why I had a mental breakdown but don't worry I am feeling so much better. Everyone says Primarys is the best but not to many people get to be with this amazing staff over here. We are so lucky to have such amazing people to take good care of us. I did love some things about Primarys but overall so happy to be back.------ So Tayton was able to sleep a couple of hours last night which has been huge. He keeps having nightmares and wakes up screaming. Last night I slept in his bed with him and for the first time he didn't wake up screaming. He did really good and both of us were able to sleep a bit. Then this morning we got to play hospital bingo and Tayton won some prizes. He was pretty excited. Then we had some music therapy come in. At first he just looked dazed and not really there. By the end he was smiling and playing instruments. It was really fun for him. That is something I will miss at Primarys. Then life flight had to trasfer us back to the U of U. I think it is so funny they come, this time he got to go back in a wheelchair. Before we left though they let us sit and look out the window for about 10 minutes. Tayton really enjoyed looking out, and we loved trying to figure out what the clouds looked like. ---------Then we came back to the burn unit and I felt like I was home again. It is amazing how comfy I feel in this place. I just love all the people here. The people at primarys were amazing to, but I just haven't made that bond with them like I have here. But Tayton is doing a little better breathing. I just think we were pushing him to hard. If you think about where he has come from this has got to be so overwhelming for him. So our goal is to just slow down, take our time to heal, and just enjoy cuddling and spending time together. It's ok if we just sit and do nothing. Hopefully it might help to process all of this. So our goals for him and me are just to relax and breathe. So grateful again for all the prayers and support. Have a great night. We sure will.

Never get to comfy

Don't ever get to comfortable is what I learned. Just when I thought the worst was over. So Levi is back with me and never made it to work today, so you can guess what kind of a day it was. Yep it started off by the doctor waking me up. Tayton struggled to breathe all night long and only slept 45 minutes last night. The poor kid has only slept a total of four hours in the past 3 days. They called in the Primary Childrens ear, nose, and throat doctors. They decided to transfer him over to Primarys because his burns are mostly healed and now we need to get his breathing stable. They did a little surgery thing this evening and found some damage in his throat from the fire accident. The new doctor said his airway is only about 25%, which is why he is struggling so much. The good news is we can fix it with loads of steroids and just time to heal. I was so thankful we didn't have to put the ventilator back in. So we are going to stay here in the ICU at Primarys until the breathing gets a little better which they said should be tomorrow night.----------- I don't know why I am going so crazy over here in the ICU. I know I have completly lost it. I am way out of my comfort zone. I have no idea who any of the nurses are, I don't know where to go, there are sick little kids all around us, and the poor kid next to us makes sounds I had no idea were even possible. And the worst part of all is they have grey gloves and yellow gowns, they don't have blue. The nurses here can wear whatever color of scubs they want. It really creeps me out. It is so crazy to me. They have different rules here. The monitors are different, the tubes are different. I don't know what to do. And the sad part is, none of that stuff should even matter but why does it bother me. It bothers me because I have gone insane. I hate the fact that there are other children here. I don't want other families to go through what we are going through. And Tayton isn't even the sickest one. It breaks my heart. I hate it, for some reason and I know I am horrible but it is easier to see old guys in the hospital beds then small beautiful children. I want to leave quickly. I don't want to see other children in pain. I never thought I would say this but I can't wait to go back to my little burn ICU. Sorry for going mentally crazy today. Tayton is going to just fine, it is just going to take a little bit longer than what we were thinking. This just puts things back a little. Hopefully I will learn to appreciate all the great things about this hospital. Have a great night, I am planning on staying here all night just for my sanity. Hopefully I can sleep.

Another amazing day! Today he stood up and walked for the first time. He needed a lot of help but it was huge. All the nurses were crying and I think it was a bit overwhelming for him. Also today we got to take a wagon ride and we first started by looking out the window. I lifted him up and just held him. He put his head on my shoulder and it was just amazing to watch him look outside. It was so pretty and just one of those tender mercy moments. Then after we took the wagon to see the big Christmas tree in the lobby. Why stop there right, the nurse thought it would be good to take him outside. We walked out and the second we walked out the helicopter started up. We got to watch the helicopter take off. He was really overwhelmed and didn't say a word. We got back into the room and he slept for a couple of minutes. -------------- We have also played legos todays and did some therapy. He got to drink some gatorade and rootbeer. He loved it, he said it burned going down but he was really happy to get a drink. We tried some solid food for dinner, it didn't go so good. We will try again tomorrow. ----------Since Tayton is finally out of critical condition, Levi is going back to work. His work has been so amazing and they basically let me decide when he could go back to work. I told them once he gets off the ventilator I can send him back. Emotionally I needed him here, because I never knew when we were going to have a good day or bad day. But now that he is stable I can let Levi go back. But he has to take the computer with him so I won't be able to blog. Maybe I can get my sister to post a few things for me. But I think we will be to busy to blog anyway, to much to do with my little guy.---------Tayton also got to wear him team Tayton shirt later and he was so excited to wear it. He also wanted me to tell you all he sounds like chewbaca. He says he is just fine and it doesn't feel like he even got burned. He says it doesn't feel like he is in the hospital. He is having a really hard time sleeping and he is suffering a bit from post traumatic stress. I think we all are to some extent. He constantly is talking about the fire which is good to some extent. To him it seems like the fire was yesterday. They said it is good to talk about it and to let him know he is safe now. Our goals now are to get him eating, sleeping, walking, and using the restroom. Once we have those down we should be able to go. I don't know how long it will take but I don't really care. It is just so much fun to be with him. He gets a little frustrated because he can't do everything he used to do. I keep telling him it will come with time. I am so proud and I must say I am a bit overwhelmed. I never imagined it would be this amazing. We still have a long road ahead of us but it is so worth it. I love this little boy so much and he amazed me every day. Keep up the great work. I will blog when I get a chance. Thanks again for helping us get through this.

I am so amazed

Wow is pretty much all I can say right now. My little guy is so amazing. I stayed at the hospital last night and basically all I could do was watch his little lungs move up and down all night long. I was hoping I could just stay awake until 8:30 a.m. then he would be 24 hrs off the ventilator and then I could sleep. He had a wiggly night but his breathing got better and better every hour. Around 10:00 a.m. they took his oxygen mask off and just put in the oxygen that goes in your nose. Then he kept talking and talking and I was crying and crying. No way could I sleep after that. The first thing he said was he wanted his fingernails cut. The hospital doesn't have any for liabilty issues and I was trying to find some. He was so insistent that I cut his fingernails. I remembered I had some in my purse and he was so excited. Out of all the things I thought he was going to say, cutting his fingernails was not what I thought he would say to me. During wound care he was clapping his hands and it made noise. You would have thought that kid won a million dollars. The look on his face was priceless. He was smiling and laughing. Then of course mom was crying. He saw all the notes and cards on the wall and said I have a lot of friends. I told him he was right.----------------He is still on some sedation medication that makes you a little loopy. The wing you off of it before you get off the ventilator but since it wasn't plan they have been slowly winging him off of it. Sometimes it is really funny. He really at one point in the day thought he was the red ninja from Ninjago. Then he cried when I hit the nurse button because it was an accident. But for the most part he is himslef but animated.------------He did physical therapy today and he got to sit in a chair and play legos. They tried to stand him up but he is pretty weak still. I know it will come with time. He is getting very excited to eat and drink. He is a little nauseated so he can't have anything right away. Hopefully tomorrow we can take him on a little wheelchair ride around the burn unit. In one month he has only been to the surgery room for a couple of hours and the rest of the time he has been in this room.------------- We had such an amazing day. I can't believe he made it off the ventilator. He knew he was ready. It is such a miracle just to see him smile. Then to hear him speak is just amazing. I am so proud of the strength he has. I don't think I will physically be able to stay here again tonight. I have only had 4 hours of sleep in the past 48hrs. If I don't get some sleep I might go super super crazy. I just don't know how I am every going to leave this boy. He is such a delight and all the doctors and nurses just amazed with how much he has progressed. I don't know who isn't impressed. Most of us are all still in shock. I am so proud of you and can't wait to play tomorrow. Mom needs to get some sleep and so do you little buddy. Sleep great and have sweet dreams, you are so amazing! I love you most. Mom

Not what we expected

Happy one month anniversary to us of being in the hospital. What a fun anniversary. So the morning started out a little scary. We stayed really late last night at the hospital and then we woke up to a phone call from the doctor. You know it is never good when the doctor calls. Well Tayton had managed to cough the ventilator tube out. It scared me to death because I thought I would have redo what we did on Monday and emotionally I was not sure I could have dealt with that. But we raced to the hospital and Tayton had an oxygen mask on and was watching cartoons. He was struggling a bit to breathe but not anything like what happened on Monday. I was still really nervous but I knew I had to be strong for my little guy. It just really surprised me to because the goal for today was to lower his ventilator settings a little bit. He was still on really high ventilator settings when it came out.-----------As of now he has been off the ventilator for 12 hours. I think it is to early to get excited because he still struggles, but he did a million times better then what he did on Monday so even if the ventilator has to go back on at least we improved a ton. He aslo got his chest tube out today that drains the fluid from his lungs. He just hadn't had any fluid out the last day or two which might explain why he is doing so much better breathing. Then two days ago he got the tube from his stomach out. So good times when you can gets tubes out.----------He tries to talk but his voice is so horse and we tell him not to talk so he can focus on just breathing. We watched a little of the USU Potato Bowl today and he got a little to excited when they scored a touchdown. His little heart rate went way up. It is really hard to not overstimulate him, and when he gets to excited his breathing gets harder. So we are just trying to keep it really calm and mellow for him. He is taking a nap right now. So sorry but we are not allowing any visitors until we can get his breathing under control. But hopefully tomorrow we will still have good news. Keep giving it all you got Tayton. We are praying for you and hoping you will stay strong and just breathe. We love you so much, mom and dad

Team Tayton!

They came!!! We got our team Tayton shirts and I was so excited, I put mine on right away. Tayton liked our shirts! We had a really great day, we watched Star Wars together, we read Christmas books together, and listened to Christmas music. It was really nice. Tayton was able to communicate really well and is getting stronger each day. I asked him if he was happy and he moved his hand yes. It was so fun and I even got some good hugs in today. I talked to him about the fire and he remembers a lot. He even told me he put his face and hands in some snow. I asked him if he was mad at me for not picking him up that day from school and he said he wasn't, so that made me feel so much better because I am still mad at myself for not doing that. At least he isn't mad at me and he really is happy right now. He loves watching his Star Wars and listening to his playlist of songs. He also got some Ninjago legos and he loved just looking at the box and I am so proud of myself. I figured out who the green ninja was. I had to look it up on the internet because Tayton was trying so hard to tell me, he was happy I figured it out.----------- My friends Christa and Mardi came to visit today and it was so fun to see them. They were so sweet to me and I don't know how I will ever repay them for the wonderful things they have done for me and my family. Thank you also to all the community who have helped us out. It is crazy to me that such a crazy horrible accident has changed us so much and I hope I can pay all of this forward one day. Also this morning it was fun to see Taytons flag football coach. He stayed at the Ronald McDonald house last year and he is helping to serve now. I am hoping I can do the same at the Ronald McDonald house. It is such a great blessing to have that so close to the hospital and that we have a place to go to sleep and shower. I never realized how much they really help families.---------- Tayton was just reaching for something and I couldn't figure out what it was. Finally I realized he wanted my water mug and I told him he couldn't have any water. Poor kid, the tears just came coming because he was so thirsty. I feel so helpless sometimes. I just had to explain to him that once that tube comes out he can have lots to drink. Hopefully his lungs will get better soon and we can try again. I am mentally a little better then on Monday, so hopefully next time we take the ventilator out I will be more prepared and can handle it a little better.------- On a sad note today I turned on the news and just cried about that school shooting. I just can't imagine what the parents are going through. I know what it is like to have your entire world turned upside down, but my story will have a happy ending. My kids are still here with me and even though he is on tubes and tons of medication, I can still hug and kiss him. I feel so bad for those families. So tonight instead of praying for pee, I am going to pray for those families for comfort and peace. I know it won't come soon but I hope they feel our prayers. I know the power of prayer is so real and it can uplift you in your darkest moments. I want others to feel that same way to when they need it. So help me again to please pray for those families. ----------Tayton I am so proud of you and how far you have come. I am so proud of your amazing attitude through all of this and that even though you have go through so much you still find a way to be happy. You amaze me every day. I don't know how I got to be so lucky to be your mom. You are such a special kid and I can't imagine my life without you in it. I can't imagine a world without you in it. You light up any room you walk into. I love you so much, mom

A nice day

So I feel like I have been neglecting my little Tanna lately. I know she has been taken such good care of, but she needed some of my attention. I have been so overwhelmed with whats going on with Tayton that today I made sure just to focus on Tanna for a while. Levi went early to the hospital and me and Tanna slept in. We played toys together at the Ronald McDonald house why I did some laundry. Then we went back to our room and I gave her a bath and painted her fingernails and toenails. It was fun just to spend some good time together. ---------- Levi's aunts came to visit and took me and Tanna out for lunch. It was nice to see them. Then we went up to the hospital and Tayton was somewhat awake and Levi was reading a Star Wars book to him. Levi said his wound care went really good and his hands are getting so much better. They even measured him for his little compression gloves today. They should come in by next week sometime. He even did good during physical therapy today. They were able to get both hands into a full fist. You could tell it hurt but I am all ready using the bribing system to get him through therapy. He has physical therapy 2-3 times a day. I might be a poor woman when all this is over. I told him he get $1.00 every time he does his therapy. (Maybe he won't remember later and I can find another bribe.) Right now we are watching lego Star Wars and he gets mad if you get in his way. It's fun to see his personality is still there. I just love that boy so much and even though I have been with him the entire time, I have sure missed him. It's amazing how just showing a little bit of his personality can brighten up the day so much. --------- I am glad we had another good day. It was fun spending time together with my two beautiful children. Nothing changed on his ventilator setting today but they might try to lower it tomorrow. We will just have to see. Have a great night, love you most Tayton------- Tanna really really really loves to write on the blog so since I am having a hard time telling her no right now, here she is again.----- tanna abcdefghijklmnopqrstuvwxyz taytonn dog cat ka

Slow improvements

Today was another slow day, not to much this morning, he was pretty calm. He kept getting wiggly later in the afternoon, and he pulled his ventilator tube out just a little bit so they had to fix it. They had him pretty sedated for most of the day and his ventilator settings are still pretty high. He did open his eyes later in the evening but is still really tired. Some good news is his white blood cell count went down again. So hopefully the antibiotics are kicking in. We are still just waiting for his lungs to get stronger, but his burns are looking great.----------- Tanna came today and it is so fun to see her. She loves going to pre-school so I am glad she still goes. She wants to write on the blog so here she is again.---tanna w xcdcvd sgjkyeidsj cxdgr hxnsvbesrz cffdry gdvbdv hhfqss f taytonfghjkjgfdzv dsefv cd ------------Well we are going to enjoy some family time together, and I hope you all do the same. We love you Tayton, keep up the great work and we are so proud of you. I love you most, mom

We are a Family

Tayton had a nice, relaxing calm day. He is somewhat sedated but he comes to every now and then. He seems pretty calm but is really, really tired today. The doctor said we are just going to give him a break today because all of us need one, including him. Really nothing is going to change in the next week besides lowering his ventilator settings like before. Basically the doctor says all he needs is time to get his lungs stronger. Really nothing major today, just trying to recover. They did have to put his feeding tube back in so that was really the only precedure done today. I'm glad my boy still gets to eat. The exciting news of the day is Tayton got a surprise package in the mail here at the hospital today. It was a signed team picture of the USU Aggie Basketball team. I know Tayton will love it. (Thanks Heather!) And they have basketball games until March so we are going to take Tayton to a few. That was one thing he asked for is after the football games were over he wanted to go to a basketball games. While we were going to school there Tayton went to a bunch of games when he was about a year old and he always have loved them. I can't wait to do lots of things with him when we are out of here.

My sister found this quote for me and I loved it. "Since before any of us were born, God planned for us to share our lives together. He knew exactly how our strengths and weaknesses would balance one another, and the depth of love, understanding and commitment we would learn to feel. He knew that the richness of our seperate characters would be developed through hard times, and that mutual trust and respect would be born as a result of overcoming the trials together and cry together. He knew that we would need each other to hug...to help...to teach...to serve...and to love!"

I just wanted to say thanks to my family for all the love and support they have shown to us. I know I am not the most pleasant person to be around right now and they stick with me. Thank you to my amazing husband for letting me cry on your shoulder and just hugging me though it all. He has been so strong through all of this. I don't know how he remains so calm when I feel like my world is crashing down. I know I am not the only one going through this and that this is a huge trial for Levi too. He helps me so much and I know I just add to his stress because he has to help me get through this. Thanks for being so amazing Levi, I love. I know where Tayton gets his strength from. You are a great dad and husband. Thanks for all you do!---------- We were watching a Christmas show tonight and the song Silent Night came on. I loved the part sleep in heavenly peace. I hope that is what Tayton is doing when he is sleeping. Sleep in Heavenly peace tonight sweetheart. We all love you so much, and we will be here with whatever you need. Keep doing your best! I love you most, mom

Hi to Lo's

We went from hi of hi's today to the low of lows. I thought I would be so excited for this day to come. I thought when they took out the ventilator things would just go great and he would love having it out. I thought his breathing would just be so easy and natural. Well they took out his ventilator today around 4:00 p.m. He struggled and struggled. Every breath was a challenge for him. We had respiratory therapy come in and did some breathing treatments and he did ok for a little while after that. Then he went downhill pretty fast and after three hours of being off the ventilator, the had to put him back on. It was so hard to see my son struggle to breathe for every breath he took. His lungs just aren't strong enough to handle breathing on his own. He is doing good right now, the ventilator is helping him breath great again. Our doctor and everyone else thought he was ready, but he is still to sick. So I'm not sure where to go from here. They said it will at least be another week until anything will change. I think it will take at least a week for me to recover from the stress of taking him off the ventilator. I don't know where I am going to get the strength to keep going, but I have no other option. I have to be strong for him. I'm trying my best but this is the hardest thing in the world. I wish I could trade places with him. I have always heard that God doesn't give you more then you can handle, but I don't believe that anymore. He has given me so much more then I could handle, but I just don't have a choice but to deal with it. I love my little guy so much, and I am so lucky to be his mother. He just wasn't ready for the next step. We will just have to be patient. Thanks again for all the prayers and support. I love you Tayton, thanks for trying your best. I love you most! mom

He's amazing!

Another great day today. He had done so good. They lowered his ventilator settings again and we are getting close to getting him off the ventilator. Hopefully we won't have any setbacks. He has been pretty stable all day. He even did great during wound care. He still is fascinated looked at his arms and hands. He is still pretty tired most of the day but is so fun when he wakes up. Today my parents came and my litttle brother and his girlfriend. You could tell Tayton was excited to see them. It was fun to see them. Keep up the great work Tayton, we love you, and you are doing so great!

Woo hoo!

We had another great day today! Tayton wasn't as busy as yesterday but we still had fun today. He was watching cartoons when I got here this morning. We read a couple of stories today, and I showed him the cute movie that our ward made for him. It was so sweet and you could tell he loved it. We are trying our best not to over-stimulate him. He gets tired really easy, and little noises can make him very anxious. After he watched the movie from our ward he was so tired and he is sleeping right now. He has slept most part of the day, but when he wakes up he is happy and it is so fun to seem him get better!------------Another huge improvement of the day is we went down on his ventilator settings. He is now on what you call support. Where basically he is doing all the breathing on his own, but the ventilator is just helping him a little bit, instead of the ventilator doing all the breathing. We are getting pretty close to taking him off, maybe in the next 4-5 days. I can't wait. Then he will be able to talk and eat and you can tell he wants to do both. He tries talking sometimes because you can see his lips moving. He is pretty funny, I put a blanket on him earlier and he just kicked it off. He lets you know what he likes and doesn't like even without speaking. He did really good today during his wound care. He kept looking at his arms and you could tell he was so curious. We told him his new skin is looking good, but you can tell he didn't really think so. The doctor then told him it will get better every day and I think it calmed him down a little. ----------I am so happy we got two amazing days in a row. He is doing so much better. I didn't think this was even possible after the really hard days we had earlier, I am so amazed. Thanks for all the prayers and support. We know our little guy is so strong and I am just so grateful to be his mom. He is so special and he makes me smile. I love you so much bud, keep up the great work. I love you more, mom--------------- Someone just burned some popcorn. Who burns something in the burn ICU, honestly it might send me or someone else into some post traumatic stress. The hallways are smoking and it's kind of huring my eyes. Anyway I just thought that was a bit crazy that something was burning in the burn unit. Glad we are all ok though and it was just popcorn.

Best day ever!!!!

Today was such an amazing day, I am so happy!!!!!!!!! I got to the hospital this morning and he was opening his eyes. This time he was actually looking at me, and he knew I was there. I started talking to him like I always do, and he was responding to me. He was moving his feet, shaking his head, it was so fun to see him. I asked him if he wanted me to read him stories, so we read a couple stories. Then he wanted to watch Lego Ninjago. So I got to watch a movie with him. He couldn't sit up but he could see the t.v. It was so fun to watch that with him. I kept teasing him and asking him if the red ninja was Zayne and he just shook his head like I was crazy. He stayed alert for a couple of hours. It was so fun, then it was wound-care time.----------- Poor kid, they had to clean and change his bandages, and it was pretty painful for him you could tell, but he was so brave. He can't cry with the tube in his throat but there were definately tears and it was hard to watch. He kept moving his fingers and hands and he would hold move his hands up high so he could see what they looked like. He was fascinated with moving his arms up and down, it is kind of like a newborn when they don't have any control but they are trying. You could tell he was getting frustatred but trying so hard to concentrate. But he didn't seemed to scared when he saw his "new skin" on his hands. ----------- After wound care he was pretty exhausted so he took a nap. Then he started to have some drug withdrawls so they sedated him more and now he is sleeping. It was a pretty big day and it was fun to tell him all the exciting things that had happened. I told him he got to ride in a helicopter here, but he didn't remember. He does not like the tube in his throat but I told him he had to keep it in so he was safe and he seemed to stop fighting it. The great news is that his doctor said if he keeps improving and no more setbacks, maybe just maybe he can get off the ventilator sometime next week. I'm trying to not get too excited. They lowered his ventilator settings and he is still doing great. He is getting rid of a lot of the fluid. I am one happy mother today. Remember my fortune cookie, soon someone will make you very proud, well it came true today.------------Oh the other issue of the day is his infection in his lungs is from staff infection that is resistant to some antibiotics. So they switched his antibiotics again and this time they should work to clear up his little lungs. ----------------- It was so sweet to actually see our little boy today. His personality is still there so now he is starting to look and act like our little Tayton and that is the best Christmas present I could ask for!!!!!!!!!!!!! Keep up the great work Tayton, we are so proud of you. It was fun to play with you today and I hope we have so many more great days together. I love you most, mom

Secret Santa

It's official, we have now been here over three weeks. I look back at my earlier posts, and thought I would have been out of here by now. I'm glad at the time that I didn't know the extent of what was going to happen. We are no where near being able to go home and I'm ok with that, as long as it takes to get my boy home.-------- Today has been pretty good. No major improvements, but no major setbacks either, so that is a great day in my book. The doctor said he was holding his own today. He did get a new venitlaor thing today, not really sure what it does or how to describe it. Basically it is new to the hospital and they only had two for the entire hospital and Tayton was one of the lucky two to get the new one. It basically just gives more info on his breathing then the other one did.---------- We had a really sweet morning, my parents came and said there was a suprise outside for me. Lately I have really started hating suprises because they haven't been all that great. But this was a really sweet surprise and made my day. I walked out to the waiting room and this is what I found.

Here we are talking to the dj's on 97.1 They did a sub for santa for us.

One spoiled little girl, it was so fun to see her smile.

Here is the letter that one of the boys moms sent to the radio station: On November 15th Tayton along with 4 other boys was burned by Gasoline when walking home from school. His injuries were the most severe of any of the boys and we are hoping he can be home by Christmas. Although Dr\'s are saying not to put a time frame on his recovery. As you can imagine Taytons family has a lot on their plate. Every minute can be different in the burn unit and the pain and stress and heartbreak associated with watching your child go through this is unimaginable. Tayton's mother Kali is so strong and so positive and is an inspiration to so many. My son was also injured from this incident and while he was in the burn unit (5 days) Kali was what got me through, every time I would feel like I was breaking down and couldn't handle the task of being strong, Kali would magically appear at our room to check on me and my son and tell him how great he was doing and how strong he was, She was my angel. No parent should ever have to see their child endure the things that poor Tayton has, as well as trying to be strong and keep calm for her unborn child and young daughter, Kali and Levi are the reason their sweet little boy is so strong. He is able to fight because they are there to hold him up. I do not know the cost of Tayton's medical bills, but I do know that Kali is unable to work and she is staying at the Ronald Mcdonald house near the hospital so she can spend every minute with her little guy, that means a lot of back and forth trips for her as well as her husband and family so she can see her daughter etc. The drive from Perry to the U of U burn center is over an hour one way and gas for that daily trip is very expensive, not to mention meals and anything else that may be needed in daily life. I want to submit the Winward family because they each hold such a special place in my heart and I would like to give back some peace and reassurance like Kali did for me. I have been listening to your show for years and I know this families story will mean as much to you as it does to me and our whole community. Please let me know if there is anything else you need from me or if you can make this happen for them. Thank you so much, - Amber Jones ---------------------- This was a really sweet letter, but I think she has done more for me then I could ever do for her. Thanks so much for doing this for our little family. We are so blessed. Hopefully we can repay all of the blessings we have been given. We plan on paying this forward! Keep fighting Tayton, we are so proud of you! Love you most, mom

Very calm day

Tayton is doing better today. He was very relaxed and calm. Yesterday his heart rate got to the 180's and today it is the lowest I have seen it since we got here. Average child is 60-80 but they said burn patients are always a little higher. His has been average in the 90's which means he is very relaxed and calm. Just what mom and Tayton needed today. Basically today was just trying to recover from yesterday. They had to give him some more medications to help his body deal with some of the stress from yesterday.--------- His little lungs are still very very sick. We are going to round two with a different antibiotic. He also now has a UTI (urinary tract infection) so the new antibiotics should clear up both infections. Hopefully those will clear up and his lungs will get strong enough so he can start breathing on his own and get him off the venitlator. Then we won't have to sedate him anymore. ---------- With all these setbacks it is looking very doubtful that he will be home by Christmas. My new goal is for him to be off the ventilator and not sedated so he actually knows that it is Christmas. That would be a great Christmas to see him off the ventilator. Best present I could have. If not you might just have to drive by my house sometime in February and see Christmas lights and a Christmas tree being put up. We will still have Christmas, just not when everyone else is celebrating. This is definately going to be a December to remember I can tell you that much.--------- So my amazing sister came today for lunch and brought me panda express. I got my fortune cookie and this is what it said.

I was so happy I got that. My favorite part about that though was soon. I take that meaning a couple of weeks. Then she showed me this sweet quote by Elizabeth Smart and it really helped me today.--------- "Nobody is trial-free, but we have a choice," she said. "We can choose to allow our experiences to hold us back, and to not allow us to become great or achieve greatness in this life. Or we can allow our experiences to push us forward, to make us grateful for every day we have and to be all the more thankful for those who are around us." Thanks everyone for all you do for us. I love all the sweet comments people leave us, the sweet letters, phone calls, and other amazing things you do for us. We are so blessed, and blessed to spend another day with our son, and to have our daughters safe. We'll keep praying for you bud, we love you so much. Keep dreaming good dreams. I love you most, mom

Oh my

What a day, what a day. Where do I even begin. Basically the entire day he was just thrashed and thrashed and thrashed. He would not stop moving. I lost count after 6 sedation medications. They had him on twice the ammounts they give to adults and it didn't even phase him. The doctor sat with us for 2 1/2 hours watching him. There were two nurses with him all day and basically it took all of us to try to hold him. The big worry about him moving is pulling the breathing tube out and all the other tubes he has connected. One nurse just sat there holding the breathing tube in. It was a very long, hard, and stressful day. The doctor says he only sees someone like this about every two years. So we had to end the day with the paralyzing medicine again, and guess what, the kid still wiggles even when he is paralyzed. I can't believe how strong he is. So we are moving backwards. His heart rate is super high, and he was having a hard time breathing so we had to go backwards on his vent settings. I know we would have some hard days in here, and today was one of the hardest. I had really great nurses who were here the entire time and barely left for 12 hours. They are amazing.----------- So I know I have been telling you all to pray for pee and it has been working great, but now I think we need some prayers to help some sedation medicine actually work. He is such a stubborn kid and such a fighter. The doctor said he thinks that Tayton thinks he is actually going to get free and get that tube out of his throat. We are not going to let this stubborn kid win this fight. Even if we have to get three nurses and me pinning him down. So please help me in praying that he will settle down, and calm down so he can heal. Thank you all for you help, we love you all. ----------Tayton- I hope you can dream about legos and pirates. I promise when this is all better I will take you to Lego Land. You can wiggle and run and play as much as your little heart desires, but for right now I need you to relax, and calm down and let your body heal. You are so strong and so amazing, but please listen to your mother. I love you so much and you are coming home with me. Just relax so it can be sooner then later. I love you most! Mom

My little wiggler

From the first time I could feel my little guy kick, I knew we were in trouble. This kid has not stopped moving. Even on crazy sedation medication he is still wiggling. It was a rough morning, he would not calm down. He kept fighting and moving and his heart rate went really high again and he had issues with breathing. He had another of those fun mucus plugs, which was pretty scary. They ended up taking off his ventilator and just using a hand pump while they got rid of the plug that was blocking some of his breathing. Once they got rid of that then he settled right down and has been pretty calm the rest of the day. They did switch his sedation medication to see if that would help. We will see.-------------He has been pretty stable the rest of the day. His vitals are looking great and they went lower on his ventilator settings. He is getting another pick line today, so hopefully that goes ok. ---------- So today I went shopping on my computer and I ordered me my own Christmas present. I decided I wanted one of those cute necklaces with all your kids names on them, and with little jewels of their birthstones. I am kind of excited about it and I hope it gets here soon. --------- I have to also tell you this funny story. So a couple of days ago I was picking out a movie with Tanna at the nurses desk and a patient in one of the rooms asked if Tanna was my grand-daughter. I told her no and asked her if how she was feeling. That was the wrong question to ask her. She just started bawling and bawling. She told the nurses that she was going to take them to jail because they won't let her leave. Also another guy I could hear yelling at the nurses. There are some interesting people here in the burn unit. We have also met some really wonderful families here though. Overall I know Tayton couldn't be in any better hands. The doctors and nurses here are amazing. Well just really small improvements today but again we are at least moving up. Keep up the great work bud, we love you!

More improvement!

Today was another uphill day, we are going very slowly but I am so happy we are headed in the right direction. The major events that happened today were he went down on his ventilator setting a tiny bit. They don't want to push him to hard because we don't want to go backwards again.---- They took him off his heart medication. His heart is enlarged because of all the fluid so they put him on some medication to get his heart to squeeze better. With getting rid of some of the fluid his heart is able to pump a ton better. He seems to be just fine getting off of it, but he had his second EKG today, but we will know the results later. I always knew he had a big heart!------- The fluid coming out of the tubes from his lungs and belly is slowing down a lot and he is peeing more, which is exactly what they want to see. He still has a lot of fluid still on him, but he is making progress. They took him off all but one of his water pills, and that one they are going to take him off tomorrow and see if he can still pee on his own.------- So the only medications he is on are the antibiotics, sedation medication, pain medication, and pediasure for his feeding tube. So we are getting down on the medications, so I am excited.---------------- The concerns are still fluid, we have to get rid of that, his liver is still a lot bigger then it needs to be. But that should come down when the fluid comes down, but the doctor said it might take weeks. But it is still working. His lungs sound better to me but we still need to clear up his pneumonia. And his little metabolism is so high that he burns through the pain and sedation medication a lot faster then he should. So when it starts to wear off he gets mad, and tries to sit up. His heart rate goes up and he starts fighting with the ventilator. So I try my best to keep him calm. It is so fun to talk to him and he has been able to open his eyes for 10-15 seconds. I don't know if he realizes what is going on. It is hard to see him struggle when he comes to but at the same time I like it because he is moving and I get to see his beautiful big brown eyes. I think he just gets scared and doesn't know where he is or what is going on, so I try to comfort him but I know myself from being on a ventilator it is pretty scary. Overall things are moving forward and that is huge for us.----------- I got to be with my little Tanna since Friday night but she went back home with Grandma and Grandpa. Today we snuck over again to the toy room at Primary Childrens and played Barbies. It was so fun to get to spend time together as a family and she is doing so much better with Tayton. It is so cute to see her talk to her brother and blow him kisses. I loved loved loved being able to say family prayer together and have our entire family together. What a wonderful blessing to have my little family all together. I can't wait for when we get to all be at home together and say prayer, but right now I will take what I can get. Maybe one day I'll look back and read these posts and realize how good life is to just have your family all together and happy and not take little things like that for granted. So please learn from me and take time to realize how blessed you are and how lucky it is to have the ones you love with you. Thanks again for all the prayers and support. Keep them coming please, please pray for pee! Have a good night, Kali

Fundraiser

So my sweet sister took all these pictures for me and helped update my blog. I tried last night to put a cute Christmas background on and it ruined it, so thanks to my sister for helping me out.

So they had these shirts at the fundraiser and I love them!!!!! I can't wait until I get to wear mine to the hospital. I want to pass them around to all the doctors and nurses up here, but I don't think the hospital would like that to much. Last night there was a news anchor from channel 5 infront of the hospital doing a live report and I so badly wanted to go steal the shirt from her. Hopefully mine will get here soon.

Thanks to everyone who came. It's not about the money for us, because right now money has no meaning in my life. What matters most is that I have my little family here and people that love and care about us in our lives. And for so many people to show up and support us was amazing. It makes this huge trial in our lives a little bit easier to know that people love and support us and really want what is best for Tayton.

The two best Grandpas in the world!

The fire crew, I heard they did an amazing job teaching kids about fire safety. I plan on doing a lot of that when Tayton gets better so this doesn't have to happen to anyone ever again. As much as I love the burn unit up here, my goal is to put them out of buisness so no one will have to go through these hard trials.

Some of the other boys involved in the accident with Santa. One boy was still missing, but it makes me so happy to see them happy. I know they are struggling with all this to, and it was so great to see smiles on their faces. Besides the physical side of this there is also the emotional healing to it. For these boys to see how much that a community cares about them is huge!

My amazing boss, and friend Mardy. I can't thank you enough for all the love and support you have shown to us duing this entire time. Even after working at the Peak for over a year and my kids have had thousands of parties and classes there, they love to come and get so excited every time. They love everything about the Peak, and so do I. I know it is because of all the hard work from Mardy, we love you. And also thank you to my good friend Christa for all your help. I know you are a busy woman but we appreciate all you have done. And also thanks to all those who donated items and helped out. The love and support we feel in overwhelming.

I'm not really sure what this is all about but it looks like a fun tug of war. Maybe can someone explain this picture for me.

My heros! Firefighters, EMT's, hospital workers, air med crews, ambulance drivers, and my favorite of course Police Officers, you are all so amazing with what you do. It takes an amazing person to be able to help others in an emergency. You are saving peoples lives and you have saved my son! I don't know how to repay someone for helping save your sons life. We still have a long ways to go with our beautiful boy, but we are still progressing. He is still moving at a snails pace but like I said before, I would wait as long as I had to, to see that boys smile. He is so special and so amazing. He teaches me so much. Thanks again to everyone, we love you!

Pictures

My sister says my blog needs pictures, so I figured out how to get them from my phone to computer. One day I will be smarter then my smart phone. So I took a few pictures of my favorite things here in Taytons hospital room. In no particular order, here they are:

All the fun baloon and packages is his room. Sorry I didn't dare move all of his iv things, but look we are cutting down on the medicines.

All the amazing doctors, nurses, respiratory therapists, physical therapists, and other people I am forgetting. There are five other people in this picture that I couldn't fit in. Sometimes it gets a bit crowded in here, but I am so grateful for everyone of these people. We are making some amazing friendships with the staff here. I hope no one ever has to come here, but if you do they are amazing! They help make miracles happen.

All the cards he gets, I hang on the wall, as you can tell we are running out of room. Can't put anymore below because there is a bio-hazard garbage can that gets used once in a blue moon and I can't put anymore on top.

Overflow wall, and you can't tell in the picture but it still goes over quite a ways, but then the medical supplies start getting in the way. But I love to hang these up because I feel so much love and support from everyone. Also a few other things that I didn't take pictures of are a picture of Jesus holding a little boy, and pictures of our family, and our little boy having fun. We even have his flag football team picture. I love it! Then we also got a Utah State banner hanging up and being at the U of U we sometimes get some crap about that but I think we are turning them into Aggie fans. Tayton is a huge Aggie fan. Don't tell Paul Milsap this, but he signed a autograph for Tayton and it said keep fighting which was really sweet and I hung it up, but I think Tayton would be more excited if an Aggie player signed it. shhhhh don't tell. He will still be excited about Pauld Milsap but we really don't follow the Jazz. We are true Aggies!

This isn't really one of my favorite things, but I think they look so funny on him. They are his new boots to help support his feet. They don't have any kid sizes so we have to put him in adult sizes.---------- So today has been a pretty good day, nothing bad or crazy so that means a good day in my book. Since the procedure last night this amazing little boy of mine has lost 900ml of fluid in his lungs/chest and over 1000ml in his stomache/abdomen area. So when Tayton came in he weighed 49lbs. Yesterday he weighed around 69lbs. That is 20lbs of fluid. Could you imagine almost half your body weight with excess fluid. So getting this fluid off is huge. His breathing is so much better, and I know he feels so much better. Hopefully we can keep it up. I have been listening to his lungs everday and they sound much better today. And for the first time since we have been here, his white blood cell count went down! I am one pround mom. The doctor even did another ultra sound and found some more fluid but not enough to put another tube in his other lung or other side of his belly. So happy and glad it is doing it's job and getting rid of the fluid.-------------- Also Happy Birthday to my beautiful, amazing mother. You are the best mom and grandma a kid could ask for. We love you so much and hope you had a great day. -------- Thanks to everyone who came to the fundraiser tonight. Wish I could have been there, but I need to be here with my amazing little boy. I heard it was amazing, and so many people helped donate items and time. Thank you, thank you, thank you. I am so amazed at the generosity of others. I feel so loved and blessed to have so many wonderful people in our lives. Have a great night and I love you most Tayton!

2 weeks

So two weeks ago today was our guys accident. I thought for sure two weeks ago we would be out of the hospital and everything would be great. Not what I expected two weeks later, but I feel so great today. --- Last night was a little rough, we left the hospital and he was really peaceful. I got back to the Ronald McDonald house and I took a shower, and got ready for bed. Every night I call the hospital to see how he is doing. The nurse didn't aswer my call and I knew something just wasn't right. I finally got a charge nurse to speak to me and she said Tayton was having a really hard time breathing and the doctors and nurses were all in his room. I asked if we should come back up but they said his room was pretty full and just to hold tight and they would call me back when they had him under control. That was the longest time of my life, and I have nevere prayed so hard. Finally I couldn't take it anymore and called and the nurse was calling me at the same time. She said I could relax and that he was just fine. My heart was still racing and I couldn't sleep. Finally I was able to calm down and fell asleep around 5:30a.m. I had the sweetest dream about my little Tayton that we were at home and watching a movie and he was so happy. Then the stupid alarm woke me up at 6:30 and I didn't want to wake up, I wanted to go back to my dream. But I had my ultrasound apt at the hospital. Good news, is that my baby is doing great.--- So then we went back up to Taytons room and his vitals were really good. His fever went down and he was really calm. Still I was upset and crying and just a wreck. Later I noticed what time it was and it was the same time as the fire two weeks ago and I just cried. Then our Stake President came in with a member of the 70 from our church. (I think they timed that just perfectly.) I was so stressed and felt so anxious. I was able to get a preisthood blessing that was exactly what I needed and they told me exactly what I needed to here. I know that they are Heavenly Fathers messengers. I felt so stressed and angry before they came and I honestly did not know if my son was going to make it. I always have had hope that he would make it but never really knew for sure. After they left I can tell you without any doubt in my mind, my son is going to make it!!!!!!!!!!!!!!!!!!!!!!!!!!! I know it, I feel it, I know it is going to be hard and we will still have lots of challenges ahead of us, but I will fight through everything I am given just to see him smile again. He is so worth it. And just the joy from feeling that comfort is huge.--- Also why they were still here, the doctor came in and explained what the next step for Tayton was going to be. They were going to insert some sort of tubes by his lungs to drain the fluid out, and also by his belly. I'm not going to say I wasn't scared about the procedure but I knew everything was going to be ok. I feel like this procedure was going to be huge to relieve some of the pressure off him. They made us leave the hospital why they did the procedure and I felt fine. I knew everything was going to go great. And everything did go great and as of 8:45 alsmost 400ml of fluid has come off his lungs, and 650ml came out of his belly. His breathing was a lot better.--- Now I know this doesn't mean the rest of this process is going to be easy. I know it is going to be the hardest thing I will have to do, but like I said before, I can't give up. I won't give up. I have faith that he will get through this. He is so worth it and I can't wait until I write down that my dream is a reality. That I get to be home and watch a movie with my son. It won't be anytime soon but it will come. Miracles do come. Hope you all have a good night and thanks again for all the prayers and support. Kali

Up day

So we started out the day a little rough. I called this morning right when I woke up to see how he was doing, and they said his kidneys weren't doing so good when they upped his water pill medication. I just started to bawl and couldn't eat breakfast. I was just devastated. I just felt like I couldn't do another bad day. - - So we got to the hospital and the doctor asked why I was crying. Then I told her about the kidney thing and she said we are just going to lower back on his medication and things will be fine. Also they got his blood back from the lab and it was the best it looked in 4 days. So they past two days they have given him a paralyzing drug to let his body rest. His blood pressure was getting pretty high and same with his heart rate. But everyday they have to stop the paralyzing drug to make sure he is still ok. They said they will just take him off for a while then put him right back on. When he came out of the medicine he was still sedated but his heart rate and blood pressure went back normal. He was doing great and they didn't have to put him back on. - - - His swelling has gone down a bit and he even opened his eyes for the first time in 4 days. He moved his feet and his arms. It was so fun to see that again. I can't wait for when he gets to sit up and talk to me. The doctors said he doesn't do anything by the book but today was a very critical day and he made improvements, so that is huge! - - - I also had a doctors apt. today and my little girl is doing great. That was a big stress relief. I got to see my little Tanna today and that was so fun to get a big hug and kiss for her. Thanks to everyone for helping out with her. I got some amazing packages from friends and family. It will be nice to have projects to work on here so I don't go to crazy looking at white sterile walls all day long. - - - Thanks to everyone for all the prayers, letters, cards, packages, dinners, and everything else that you do for us. We feel so loved. I know were not out of the woods yet and we will still have our ups and downs but at least we have some up days. So grateful for my little family and I am so blessed to be Taytons mom. Love you bud, keep having good days. Keep improving, love you most! Mom

A little better day

So today was a little better. His fever went down a bit and his chest x-ray looks a l ittle better too. Still a really bad infection but at least some ounce of improvement. His white-blood cell count did go up a little higher and he also needed his 4th blood transfusion today. He is still a pretty sick little boy but he is still fighting and stayting strong.- Also some good news is we had the cardiologists from Primary Childrens come over and check out his heart. His heart is still pumping really good so I was excited to not hear bad news. Basically what they said is he needs to loose all the fluid. So they upped his "water pills" medication so hopefully we will see more pee. We still need to pray for pee. His body just doesn't want to let go of the fluids. I have been coming up with pee cheers today.- So I am very gratful we are figuring this out. He still has such a long way to go and I am so blessed to have had a better day today. Yesterday was rough, so glad today went a lot better. Now we just have to stay this way. No more complications please. I love you Tayton, I am so happy to be your mom. Just let your little body rest and recover so you can get better. I know you can do this, you are so strong and so amazing. Love you most, mom

Rough Day

Yep thats pretty much all I am going to say. It was a rough day. Lots of tears and perhaps even a mental breakdown. Don't worry I left Taytons room so he couldn't hear me. Maybe tomorrow it will be better. Good night, keep fighting Tayton, you have no other option but to keep fighting. Love you more bud, mom

Small Miracles

So last night I was alone in the room with my little boy. I was talking to Heavenly Father in my mind. I was explaining to him how hard this was and I just need a tiny miracle to keep on going. I said I know he won't be able to get off the respirator and walk tomorrow, but just please show me a tiny miracle. Then I noticed his temperature which was 38.7 degrees celcius. I said just lower it to 38.6 for me. I said I'm walking out the door to go tell the nurse something, and please just give me a little bit of hope. I walked back in the door and sure enough his temperature was 38.6. I just started to cry then I ran back out to the nurse to tell her of my little miracle. I know God loves me. - It's hard right now to see the big pictue, but maybe in a few weeks I will look back and be grateful he was sedated through all this because it is exlremely painful, and what a huge blessing it would be if he couldn't remember it. - It is still the hardest thing I have ever done to see my boy in this much pain. I am not a patient person and I want things to happen so fast. Levi saw Taytons shoe he was wearing and I can't believe he wan't burned any more then what he was. Also I spoke with some parents who spoke with the fire chief about they accident. The fire cheif said the accident should have been much worse, and they are lucky to be alive. I am just gratful my little guy is still here. I don't care how long it takes to recover, as long as he is still here. Keep fighting my tough little dude, you are amazing. I am so proud of the stregth you have. But just keep getting better. Love you most, mom

More complications

Uggg, I'm getting so tired of posting things like this but today we had more complications. He definately has an pnemonia and it is not fun. They said it happens from being on the ventilator this long. Aslo we found out some of his major organs are enlarged. Not good news. His vitals have stayed pretty good today and we got to see his skin graphs and it looks like for the most part his body is accepting them. There are still a few areas that look a little questionable but we will just have to wait and see. - He had some more troubles with breathing for a while but they seem to have it under control. Hopefully tomorrow we will have better news. In the mean time keep the prayers coming. I love you bud, keep fighting!

He's a trooper!

Isn't he the cutest boy you ever did see!

I'm pretty sure he won't mind me posting this picture of him on the Air Med. I think he will just be mad because he won't remember flying in it. I think someone from the media took this picture. My heart still drops to my stomache when I hear the helicopters fly in. I just pray for the person and their families.

Today has been a pretty good day. Not a ton of progress but his face is looking so much better. The swelling has gone down a lot in his face, and his vital signs have stayed where they need to all day. They also turned his oxygen down to 60% and he has been pretty stable with that, so overall a pretty good day. - Some other news we learned today, is they think why he has been having such a hard time breathing is because he inhaled some of the fumes, and this is a side effect from those fumes. The bad part about that is even though the swelling is going down a bit his little lungs are not ready to be taken off the ventilator. It looks like it will be another week. And now that he has been on a ventilator for 8 days he has an infection in his lungs. So he now has a fever but they will put him on some antibiotics, so hopefully that will help. He also got his second blood transfusion. Our new goal is to be out of here before Christmas. I wish I could post pictures of his room and all the cards, and packages he has been getting, but I really have no way of getting them from my camera on to the computer. We are taking pictures, but I won't put any up of Tayton until he tells me to.- Also today I snuck Tanna over to Primary Childrens to the toy room. They had volunteers there who had craft and paint kits for the kids. It was really fun for her and we had a good time. She made a star, duck, and a car for her brother. She also painted him a picture and we hung it up in his room. She loves her big brother and he loves her so much. I had a good time with Tanna and I loved being with her.- Thanks again for all the prayers, we still need them.

Happy Thanksgiving!

Today was bitter sweet. We started out the day pretty rough. Tayton was really struggling with his breathing today. He was breathing really fast and not getting enough oxygen. It was not fun. They had quite a few different respiratory therapists come and try to help but nothing was working. Finally they called a therapist from down in the NICU and he got his breathing under control. Yesterday Tayton was on 40% oxygen and today he is at 75%. Not the improvement I was wanting but he's still here.- On the positive side he really responded to the water pills today. He was peeing!!!! Never thought I would be excited for pee. It was too much though so they are halfing his medication. They said they want him to loose the fluid gradually, not all at once. So your prayers really worked, thank you. But I think it is hard breathing when you have all that fluid, so hopefully we are making progress with the fluid which will help everything else.- Also we saw his skin graphs today. I don't know what I was expecting, but it was hard to look at. The doctor said it looked just like it should so that is good news.- My parents brought our little Tanna down today for Thanksgiving. It was nice to have all my little family together and my parents did bring us a plate of Thanksgiving food, so we did get to eat some turkey.-If none of this had happened, I would most likely be out black friday shopping. Trying to get some good deals for Christmas. I must say because of this trial, it has definately put things into perspective for me. I don't care about toys, electronics, or other material items. I am so thankful for my precious little family. I am so grateful to be a mother to my wonderful children. I am so happy for the little miracles that I see with my son. I am grateful that I get to be a mom again to a baby girl in April. It's hard being pregnant right now with all the stress going on, but hopefully by April Tayton will have improved a ton, and I can handle helping Tayton with everything he needs and also take care of a 4yr old, and a newborn. I am so greatful for great doctors and nurses who take such good care of my precious, precious, son. I am greatful for my religion, I don't know how I could keep going. Just when I feel like I can't get through another minnute, I feel someone holding me. I know it's Gods helping me through this. I remember when Tayton was two, he cut himself on a can lid and had to get stitches. I had to leave the room because I was crying so hard. This has definately made me stronger. I hope no other mother has to see their son like this. Anyway, have a Happy Thanksgiving and I am again so grateful for all I have and that I had another day with my Tayton, Tanna, and Levi.- Tanna wants to write on the blog, so here she is- tannatannatanna