I like to walk at PT!

I just wanted to let everyone know that PT is going very well and things are looking up. Penny, our PT, has told us to focus on standing and cruising. Landon just loves the fact that he can walk around again. He is a total maniac outside, its a great thing to see. I hope you all enjoy the video. More to come! (Sorry for the horrible quality on the video, its from our cell phones :/ )

Going to see Penny...

Hello all!!!

Hope everyone had a great day. We've been very busy today with going to see Penny the physical therapist. Landon was feeling kind of crummy this morning, so he was really irritable going to "work out" with Penny. :) He got over his little crumminess as the day went on.

When we went to see Penny she had Landon work on kneeling at a bench to play with some toys. He preferred to play like that before his episode, and he seemed very happy being back in that position. He played for a little while until Penny started making him stand up and sit down....he didn't like that very much.

Penny had Landon standing in a little contraption that looked like a wheelchair. It was supposed to help him get the movement of walking without having to worry about holding his other extremities up. He was strapped into this chair that held his body up and let his feet dangle. He cried the whole time he was in it, but as he got moving his cry changed from hysterical crying to "i'm only crying because i want to remind myself that i was upset". We didn't torture him too long though...he got out and was quickly side-tracked to something else. Overall he did really well today and Penny said that he is still making small changes...which is good. We definately need to keep the changes coming. :)

I've included a couple of pictures from the past couple of days. The one on top is Landon playing in his highchair today with "Mack" from the movie Cars. He obviously loves it. When we asked him if he wanted to watch Cars today, Landon immediately looked up and stared at me as if to say, "heck yea"! It was super cute. The bottom one is of Landon with his Aunt Heather and cousin Logan. They have been here visiting with us this week.

We are home and lots of other updates!

In the Denver Aquarium Landon is trying to decide which ocean to destroy....I hope everyone got to spend some quality time in the Pacific!

Wow it has been a long time since we have updated Landon's blog and I'm sure everyone is dying for some updates. Dawn is taking a small break from updating the blog and I told her I would write some updates for everyone.

So for those of you who were following Dawn's last post, we found out that Landon was not suffering from any sort of drug withdrawals (unfortunately). As they started to take all the drugs off, Landon started to become more and more upset and more and more unconsoleable. He spent the first few days off drugs being exhausted but only managing to sleep for 2-3 minutes at a time. Whenever he would get angry, his entire body would become stiff and he was unable to move.

The doctors took note of the posturing and the worry from Dawn and I and they ordered an MRI for the next day. Dawn and I were so filled with anxiety when he had to go down for his MRI because they wanted to put him under again. I couldn't allow myself to sign the consent for that and would only allow them to sedate him. Dawn and I did our best not to go crazy for the next seemingly year long thirty minutes. Then we got a call from our nurses that Landon did great and he was on his way back up to the PICU...*WHEW*

We did our best to console Landon and tried a myriad of different drugs to try to get him comfortable without much luck. He was inconsolable all night. He wanted nothing more than to be held, but any time you touched him he would get upset and become super stiff making it almost impossible to even hold him. It made for some very tough nights, physically and emotionally for both Dawn and I.

The next morning, I left to go back to the hotel to shower and got a text from Dawn that I needed to get back to the hospital ASAP. Immediately my heart sank and I quickly called Dawn. Dawn's voice was definately saddened and she informed me that Landon's MRI showed that he had suffered brain damage from the arrest. I raced back to the hospital and when I got there I took all the news pretty hard. Dawn did her best to be strong and we went through a few days where we really needed each other's strength.

The neurologist came in to talk to us and let us know all the findings. They categorized Landon's brain damage as moderate to severe and let us know that it is difficult to really see how far a person can recover from a brain injury. From what we later learned, people can all have different results to the same injury to the same area of the brain. So now we have to play the waiting game and its up to Landon to fight his way back to us.

And fight he did. Landon began to slowly recover, showing a little less tightening each day but he was still super sensitive to touch, making him scream and cry. He would eventually fall asleep in your arms for hours. We expressed to our doctors in Colorado that we were ready to go home and were confident that we would be able to take care of him. All of our nurses and doctors were amazing, but we were so drained from living in a hospital that we knew it was time to go home.

On the night of June 4th, my mom came out to Colorado to help us on our long trip home. And the next afternoon we left for Nebraska. It was a very difficult trip as Landon was still very difficult to console, and it pulled at our heart strings to see him so upset when we couldn't really do anything for him. I truely owe that trip to my mother. We drove straight home, except for a few leg stretches and little boy diaper changes, from 4pm to 2am. Battling through a strong midwestern storm, but nothing was going to stop us from getting to our little house on Offutt AFB. I bet that same trip would've taken us 2 days if it was just me and Dawn. From the bottom of our hearts....THANK YOU BONNIE!!!! Thank you for helping us get our little man home safe and sound.

When we finally got home, we started to relax and called Landon's pediatrician to get all his physical therapy, occupational therapy, and any other therapies that would expedite his recovery, all lined up. Then we set him up with some movies and just let him relax. We were lucky enough to get to see our physical therapist just a few days after getting home (Thank you Carol for all the insurance magic!).

Penny (our PT) was obviously shaken up after seeing him. She had helped Landon learn to crawl and walk, so she knew how he was before all of this happened. Landon was so agitated that all she could do at that session was turn out the lights and just let him lay by himself. Finally, after an hour of crying, he calmed down enough to allow her to stretch out his muscles a little bit. She was very, very worried about him and the patterns that his limbs were moving in. Penny told us to just let him relax. Do whatever made him comfy and just let him be. She was going to contact Dr. LaCroix (Landon's pediatrician) the next day. For four days straight, thats what we did.....

And for those four days Landon began to improve and improve and improve. We all began to joke with each other when we woke up each morning saying, "What new thing is he doing today?" to which someone would reply "He's moving his arm!" or "He's rolling around!". Slowly... slowly things started to look up.

Our spirits all took a drastic turn one night when we took Landon out for a walk in his stroller. We were all expecting an uneventful walk and Dawn, my mother, and myself were all just enjoying each other's company. Then, as I was pushing the stroller, Landon made an odd sound. I quickly leaned down to check on him thinking he was upset. But I quickly noticed he was LAUGHING!! I said "he's laughing!!" and we all started crying in the middle of the street. Its amazing how healing the sound of a single laugh can be. He continued to laugh all the way through the walk and all of our spirits launched sky high.

That was his turning point...his personality started to return to us. He began to remember old games we would play, and old things we would say to him. Finally we made it in to see Landon's pediatrician. We were in her office and Landon was rolling around on the paper bed laughing and giggling. He was doing fantastic and we were all laughing with him. His doctor was beyond confused. She had be informed by our PT of how poor his condition was and couldn't believe how amazingly far he had already come! We learned later that the doctor was so worried about his performance in PT that she was contemplating readmitting him into the hospital. After seeing how far he had come, she reconsidered. Landon is truely a fighter.

Over the next week, we went to physical therapy and occupational therapy every other day. Landon continued to make amazing strides. He is no longer stiff and enjoys to be touched and played with. He is moving the left side of his body extremely well. His right side is loosening up and he is starting to use it again. Our therapists are so pleased with his recovery that they are even having trouble setting goals for him because of how much he progresses from each visit.

More time went by and he recovered more and more! We have now been going to PT and OT for about 2 weeks. We have been working on Landon's weight bearing and some other gross motor skills. Just two weeks ago he couldn't move at all, and now he can almost sit up by himself! We may have a really long road ahead of us, but we have all been inspired by Landon's spirit and I think he is the one keeping Dawn and I up now. We are amazed every day!

Thank you to everyone for all your energy and all your prayers. It has truely done magic and I know Landon will never give up. He is my hero.

One final note, we went and saw Landon's doctor again today and heard the results of the MRI after a radiologist in Omaha took a look at it....and well, they said it was normal. As in normal normal, no brain damage. We need to do another MRI to find out what the deal is, but we are apprehensive about putting Landon under sedation again, so we have decided to wait a month and see how he progresses. Landon's doctor said that Landon's loss of skills is still a normal result from an arrest. Unfortunately, no one knows anything else at this time. We will post more as soon as we know anything.

We're still in Denver....

I'm not sure how many of you know about Landon, so I decided to write on here to give everyone an update.

We made our way to Denver on Monday and stayed overnight in a small town a little more than half way to Denver, so that we could take Landon to the Denver aquarium on Tuesday. We ended up taking Landon to see the fish, but he wasn't all that interested in the fish...only the exit signs and the numbers on the tanks...I don't know...he's a funny kid.

On Wednesday we took Landon in for his procedure and waited in the waiting room like we always do, preparing ourselves for the mad Landon we always get back. As we were waiting we heard someone call over the intercom system a "code blue" for someone in radiology. Braydon and I got really scared, but reassured ourselves that he was fine. About 10 minutes later, as Braydon decided he needed to use the bathroom, a nurse came into the waiting room and called for us. I stood up and made my way over to her and she said that she needed to speak with us and immediately my heart dropped. As we were waiting for Braydon, I asked her if everything was alright, and she just kept saying that she needed to speak to both of us. When Braydon got back from the bathroom, she walked us into the hallway and told us that at the end of Landon's procedure his heartrate had dropped to lower than 60 beats per minute, and they had to start CPR on him. She took us close to where Landon's procedure room was and we waited as nurses and doctors (even the AirLife people that take people to hospitals in the helicopter) came in and out of his room. Occasionally someone would come out and tell us that he had a good heartbeat and blood pressure. What felt like 30 minutes later, the doctors came out and told us that at the end of the procedure when they were just about to move Landon onto a bed to take him to recovery, he ended up having a bronciospasm basically where the broncials close off. They think that at that time Landon had air in his lungs and went to cough and therefore punctured both of his lungs, and his lungs collapsed. That's what made his heartbeat drop and why they needed to perform CPR. It was something that happens occasionally, but they hadn't seen it to this degree.

Landon has been in the PICU since Wednesday, but is doing really well. They had to put chest tubes into his chest to get all the air out so his lungs would be alright. They just removed those yesterday, and they haven't seen any air in his chest cavity since then....which is good. :) He is off all of the medications they were giving him. He didn't get much sleep last night and we were worried cause he kept stiffening up like he was in pain. When we talked to the doctor today, she said that he might be having withdrawals from some of the medications he was on. So we're going to have a couple more days of trying to get him off the pain medications. Fun! :)

All in all, it was a tramatic experience, but it also taught me and Braydon a lot. We're going to slow down with the procedures and not come back until early fall. The anestesiologist said that it might have been caused due to the fact that he only had 6 weeks to recover and he might have needed longer than that. So we are going to take her advice, plus for the fact that we don't want to put ourselves through that again so soon. He will need these procedures, so we have to figure out a way to get them for him. The anestesiologist also said that now we will take extra procaution when we do it again.

We have also learned to not take anyone for granted. Braydon and I both thought we were going to lose Landon on Wednesday. We're glad we didn't and we won't take anyday we get with him for granted. Hopefully, this can also help others reading this to learn the same lesson. We are so happy that Landon came out of this and we will be even more excited when we get to take him home and spend more time with him.

I want to thank everyone that already knew about this for all of your concern and support through all of this. It was very reassuring to know that you all cared. Thank you so much. We love you all and I'll keep everyone updated. XOXO

We're off to Denver...again...

Hi everyone!!

Another update as to what is going on in the Walsh household. We will be leaving tomorrow to go to Denver for Landon's next procedure. His procedure is on Wednesday morning, so keep us in your thoughts that day. We're leaving early to give us more time for travel and we are also going to try and take Landon to the aquarium while we are there. That should be fun. One day we will have to go on vacation to Denver so we don't have so many negative connotations associated with it. :)

We have had many doctors appointments over the past few weeks and I apologize for not getting on here with an update. We went to go see Landon's eye doctor to see how his vision was coming along in his left eye. He said that Landon still favored his right eye, so he suggested that we start patching his right eye so the left one could work a little harder. Fun! But the place where we get Landon's glasses had these cute little covers to go over one of the lenses so we didn't have to tape a patch to his face. I got a cute one that had a picture of a pirate. :) I wasn't looking forward to putting tape on his face for the obvious reason that he would just rip it off, and that Landon's skin is already so sensitive I didn't want it to break out from the tape. We tried putting his glasses on with the cover and he doesn't like it, but we are trying to make a deal with him that he has to wear his glasses while he watchs tv...hopefully the tv will keep him occupied enough that he'll forget about his glasses. Since he only has to wear the patch 2 hours everyday, we're hoping that a movie a day will help ease him into it.

We also went to go see Landon's ENT doctor. He's the one following Landon's progress with the trach. We went to go for a follow-up from Landon's last procedure, and he told us that he was hoping to see more progression from these procedures. He wants to put Landon under after he's healed from the next procedure (maybe in July) and do another bronchoscopy to check out how Landon's airway, throat and tongue look. I'm crossing my fingers that he finds good news cause he said that if there wasn't much change then we didn't need to go to Denver anymore. Which scares me. We'll have to move on to the next and final type of treatment before the last option of cutting into his tongue. Keep your fingers crossed that all of this is helping and hasn't been a waste of time. That would be so aggrivating!!!

Anyways, on a happier note, Landon is growing like a weed and has become a bit of a Chatty Cathy. He's not saying anything in particular, just a lot of sounds, but we have been working hard to get him to say words. He's getting there. Landon's teacher brought out the lady to help us with Landon's communication. She carried a rolly backpack full of things to try with him. He wasn't quite understanding and using the picture exchange that we tried with him, but he caught on to using the pictures when they were placed on a button that said the word. He would push the button for the object he wanted and then we would give it to him. We're just going to condition him to use the buttons when he wants something. Eventually, he'll be able to make sentences with them.

Well, I'll keep everyone updated about Landon when we get back. Please keep us in your thoughts...especially Landon.

As promised, I included some pictures from Landon's first experience in the bean box. He had a lot of fun dumping the beans on himself...

More updates!

I realized that it's been a while since I have sent an update on how Landon is doing, so I decided to spend some time getting everyone caught up. :)

We've been very busy in the month of April getting Landon back up to speed from when he got his surgery. He took about a month to get back to eating normally. This procedure was pretty hard on me and Braydon. Landon was having a hard time with swallowing, so he would drool a lot and then he would get it all over him. He hated it just as much as we did. But we are so happy that he is back to his normal self.

After that my dad came to visit for my birthday and he got to see Landon for the first time since last July. So there were lots of changes that he got to experience first hand. While my dad was here, Braydon and I signed papers to move into a house!! We're super excited to have more room and a place to call our own. We are actually building a house, so we won't be moving until September/October. The neighborhood is not very far from base, so we will still be in the same area of town. I'll keep you all posted as it's being built.

The weather is finally starting to warm up and we've been spending a lot of time with the windows open or going outside. Landon loves walking around the neighborhood and swinging on the swings. We took him outside with the sidewalk chalk yesterday and he really enjoyed coloring the sidewalk (and himself) with the chalk. :) If the weather is nice tomorrow, we are going to make a "bean box" for him to play in instead of a sandbox. He can't have sand because it's very dangerous for people with trachs...it gets everywhere. He also can't breathe beans into his trach like he could with rice or something like that. I'll have to take some pictures of that because I'm sure he will enjoy himself. :)

Yesterday we had a visit with Landon's Gastroenterologist, Dr. Zapata. He is the doctor that keeps track of Landon's weight and eating habits. We talked about my concerns for Landon wanting to eat more foods orally, but thought that maybe the Pediasure was making him too full to where he didn't experience being hungry. Dr. Zapata told me that we could try moving his feedings, so we are combining Landon's last two feedings of Pediasure and having the pump run slowly over a couple of hours when he's sleeping. That way we only have two feedings a day and can possibly spread them out so that we can get Landon eating more orally. We haven't quite figured out a good schedule for that yet, but we're getting there. Dr. Zapata reassured me that he shouldn't lose any weight because he's still getting the calorie intake from the Pediasure, we are just wanting to get him more interested in the tastes of foods.

Landon's teacher, Lois, is also going to bring a woman to our house to work on Landon's communication. She says that she has worked with kids with trachs before (or kids that can't communicate that well) and need other forms of communication to express themselves. She wants to start using a picture system where Landon will have pictures of familiar objects and will bring you the picture of what he wants. We're hoping this will help with the whining too. :) She will be out here next week and hopefully she will bring some other good ideas too.

We will be going to Denver at the end of this month to do another session of injections on Landon. Hopefully Dr. Yakes will be kind to us and concentrate on another area so we won't have to deal with the drool monster again. :) Who knows?

April showers...

Well, Landon is finally getting back to normal. This has been a long healing process, but we are getting to the end of it all and Landon is thriving! He decided one day that he wanted to start eating again, and has been eating everything since!! He wants everything that we have to eat and gets really angry when you don't give it to him. :) I guess that's a good problem to have.

We have been venturing into the terrible twos already. Landon has shown us a few episodes of getting on the floor and kicking his legs and showing us how mad he can get. Honestly, it's aggrivating, but kind of entertaining at the same time. :) He gets upset over the littlest things and we have to help him calm down and relax. Oh the joys of having a toddler! :)

We hope everyone had a good Easter. The Easter bunny visited Landon and left a basket, hid eggs in the house and outside in the backyard. We helped Landon collect the eggs and put them in his basket, but he just wanted to open them to get the M&M's and pennies out of the inside. I'm sure he will understand better next year.

We also went to visit Landon's pediatrician this week. She said that Landon is doing really well. He weighs 27lbs 7oz which puts him in the 50th percentile for his weight!!! I was so happy to hear that cause we've been fighting with his weight since he was a baby. I was also concerned because he hasn't been eating anything orally for the past 3 weeks so I figured he would've lost weight, but that wasn't the case. It was a huge relief. Dr. LaCroix also said that when he gets back to eating the same amounts orally that we could go down to three feedings a day of Pediasure instead of four. She said to replace the fourth with water so we are making sure that he is still hydrated. Anything that he drinks during the day can be taken away from the water feeding though. So we are making progress......slowly but surely. Landon also grew a whole inch, which puts him in the 75th percentile for his height. I could tell he was growing cause he's able to reach things on top of the kitchen counter now. :)

We're so happy that Landon is doing so well and hopefully we can make some more progress before we have to go and start the process all over again. I'm just keeping myself focused on the end...getting that trach out!!!!!