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!!!
Saturday, April 4, 2009
Saturday, March 21, 2009
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!!
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!!
Saturday, March 14, 2009
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.
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.
Wednesday, March 11, 2009
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....
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....
Sunday, March 8, 2009
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!
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!
Saturday, February 14, 2009
Happy Love Day!!!!
Hi everyone!We wanted to wish you all a Happy Valentine's Day!!! We're just sitting around the house enjoying each other's company today. We're thinking about making some cupcakes later since Braydon gave up chocolate for New Year's. Landon enjoyed the Valentine's that some of you sent...he spent some time studying them (open, close, open, close). :)
We were lucky enough to get some snow on friday the 13th...lucky us! I posted some pictures from us playing in the snow. We got around 6-8 inches. Landon could barely walk through it! We played in Landon's sled and he seemed to like it this time. We've tried other times, but he just wanted to get out. This time he just laid there and enjoyed the ride. :) Here are some of the pictures:
Landon asking for "more" in his sled and below is Landon and below is Landon and Braydon's footprints in the snow...
Happy Valentine's Day!! We love you all! XOXO
Wednesday, February 11, 2009
Just an update...
Hello all!
We have had a pretty uneventful February so far. I'm not sure if that is a good or a bad thing. :) I'm going to take it as a good thing.
I did get a chance to give Dr. Zapata Landon's feeding journal and I heard back from one of the dieticians at his office. They said to keep him on what he is getting now and we just need to come in for a weight check at the end of the month. They will see if he gained more weight and if he has then we will start playing with how much Pediasure we are giving him. Landon has been doing really well eating table foods with us and is drinking out of one of the cups that his OT gave us. He takes anywhere between 2-6 ounces of liquid by mouth a day. It's really good for him, but compared to an average child it's no where near where he needs to be. So hopefully playing around with some stuff with Dr. Zapata will get us closer to where we need to be.
Also, just to let everyone know I scheduled another trip to Denver in the middle of March. March 19th to be exact. He will have another treatment that day with Dr. Yakes. I'm not exactly sure where he will be focusing his attention this time. Last time he worked more on his lower jaw and cheek, and the time before that he focused on his tongue. So maybe he will go back to the tongue this time...not sure.
Other than that, Landon has been growing like a weed and doing wonderful. I've been taking him on playdates with some of the other wives on base, and he just loves hanging out with the other kids. We're planning on doing a lot of playdates this summer not only for Landon to get to hang out, but for me too! :)
* I added a couple of pictures...the top one was Landon at his friend Marcus' birthday party. He was getting in the way of taking pictures cause he wanted to play with the camera. The bottom one is of Landon "counting" his legos. (He doesn't actually count them, he just likes to do the motions.)
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