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!!!!!

We're feeling a little better...

Hi everyone!

It's been a while since I left an update, so I thought I would let everyone know how things are going.

Landon is still healing from his procedure although he gets better everyday. He's still not eating anything by mouth, but I try everyday to give him sips of juice or some applesauce. He's having a hard time swallowing since his tongue is still kind of stiff and big. Dr. Yakes ended up doing all of the injections in his tongue this time, so we are having extra healing time. I am, however, excited to see the changes that this procedure brings. We've had so much success in the past with this and he changes (for the good) so much afterward, that you can't help but get excited for him. We've stepped a couple of steps backward, but we always go three or four steps forward.

I hope everyone is doing well. I'll keep everyone updated to Landon's changes. Love you all!!!

We're back from Denver!!

Hi everybody!

We made it back safe and sound from our trip to Denver. Landon is doing well although his tongue and chin are pretty swollen. He's being a trooper though. :)

Dr. Yakes and his nurses were pretty impressed with how much Landon has grown since the last time they saw him. He was the entertainment at the hospital while we waited to go in for the procedure. He paced the hallway pointing at the exit signs. He gets infatuated with the silliest things. :) One of the nurses got a wagon for Landon to ride in, but he wasn't sure about how much he liked that. As I walked him around, he tried to make up his mind about if he wanted to whine or look around. :)

After the procedure Braydon and I were not looking forward to having to see Landon in pain, but thank goodness we had a good nurse that didn't hesitate about giving Landon pain medication. He woke up pretty nicely and just wanted to hang out and sit with Dad. We were so thankful for that nurse. Last time we went, Landon woke up without enough pain medication and he thrashed around and was upset for a couple of hours until the nurse finally gave him enough pain medicine to calm him down. It was very aggrivating, but this time it was a lot easier.

Dr. Yakes ended up doing injections in his tongue and underneath his chin. So now Landon can't eat anything cause his poor tongue is so swollen. On the way home yesterday, he wanted some goldfish crackers and didn't understand why he couldn't have them. Poor little guy.

All in all, I can't wait to see the results from this procedure and how much more he is going to be able to do!!! Keep us in your thoughts and wish Landon a speedy recovery...I know we are! :) Love you all!!

Our day with the speech therapist...

Hello all!

We had our appointment with the speech therapist on Thursday. I'm sorry it's taken me a few days to post this...we've had a crazy couple of days. Anyways, Landon's teacher, Lois, had recommended that we go see a speech therapist that she had worked with before named Paul Lakko (I'm not sure if I'm spelling his name right). He works at the Munroe-Meyer clinic at the University of Nebraska Medical Center here in town. He has worked with other kids with speech delays that have pasy muirs before, so Lois thought that he would be a good fit for us.


Landon did very well in showing Paul how he knew most of his animal sounds. He knows the sounds for (but doesn't completely know how to say) cat, lion, monkey, dog, bird, and he's starting to get bear and dinosaur (dinosaur is pretty much the same as lion cause they both roar). :) He doesn't get the sounds out exactly the way they are supposed to be said, but Paul said to just work with what he is giving us. He told me to keep trying to get him to use the front of his tongue by telling him to imitate a cat (Landon just rolls his tongue around in the front of his mouth when he does a cat noise). He also wants us to start getting him to hold the sounds for longer periods of time and to make sure that he is doing most of the noises from his mouth and not his nose. Landon tends to be a little more nasally sounding when he talks, and Paul informed me that that is hard to change later, so to try and get him to correct that now. So we're going with that for right now. He's going to get back with me in a couple of weeks to see how we are doing and if and when we can set up another appointment.

I've included a couple of pictures from this month so far. There's a couple of cute ones of Landon and his dad and also some from going to the park. Landon was really undecisive about the slide and preferred to just walk around the jungle gym instead of playing on it. I think my kid is going to be the kid at the playground that collects rocks or something instead of playing. :) Who knows?

Other than that we are just getting ready to take our journey to Denver this coming week. Hopefully all will go well. I'll be keeping everyone up to date as things unfold. Keep us in your thoughts.

We got the go ahead...

Today we went to see Dr. Quinlan (ENT) to get the go ahead for Landon's surgery. When our name was called and I walked Landon into the exam room, he immediately started crying and pulling me to leave. He knew... I felt so bad.

Dr. Quinlan did his assessment and asked us some questions. He told us that Landon was looking great. He showed us some pictures that he had taken of Landon while he was sedated last summer. Looking at the pictures I noticed a big difference in the size of his tongue. It made me feel good that there really have been a lot of changes. I don't always get to notice them that much, so it was nice to get to see the progression. He also reminded me about Landon's tonsils. He said that they were rather big and could eventually get in the way of his breathing when we get to the point that we are going to take out his trach. So we will probably have to get those removed. He said that that will be an easy procedure and not to worry to much about that. I've never had my tonsils removed, so I don't really know if it would hurt a whole lot, but I'm sure with all the lasers and stuff they have now a days it will be a piece of cake.

We will get to go back to see Dr. Quinlan in a month after Landon's surgery. He wants to possibly put Landon under sedation this summer to take a really good look at the progression, but I think he might just be playing that by ear. That's all I got for today, but tomorrow is a trip to the speech therapist....

Hi everyone!

I know I haven't wrote anything in a few weeks, so I decided to get on here and let you all know that we are still alive and kickin'! :)

We haven't had much going on besides keeping our fingers crossed that the cold weather is starting to move out and the warm weather will hang out with us. We've had a pretty crazy winter (as a lot of us have) where we've had some warm days that get into the 60s or 70s and then a day later be back to 20s or 30s with snow. Perfect breeding grounds for colds and flus. Luckily Landon has gotten the less severe of the two. He's had the sniffles and coughs for a few days now, but he seems to be doing a lot better. Just a cough here and there.

We've got a lot coming up in the next week or two. As I've mentioned before, we will be making a trip to Denver starting on the 18th and Landon will have his procedure on the 19th. Keep your fingers crossed and prayers coming that everything goes well and it will be an easy recovery for him.

This week we will be going to see Landon's ENT doctor (Dr. Quinlan) to get the go-ahead for the surgery and to just do a routine checkup. He'll probably want to see what is going on in his throat and if it has changed over the past 5 months. This is when we get to see if what Dr. Yakes is doing in Denver is working or not. The last time Dr. Quinlan took a look he said it was an improvement but we still have a ways to go. So keep your fingers crossed for that. :)

We'll also be going to see a speech therapist on Thursday. This office was recommended to us by Landon's teacher that comes to see him once a week. She said good things about him and his team. They have worked with kids that have trachs and pasy muirs before, so I'm hoping that they can give me a lot of tips on how to work with Landon. We're going on Thursday for an evaluation, so lets hope that they will be able to help. :)

That's all for right now. I will be keeping everyone updated about everything going on, so keep checking back!! Love you all!