Things have been pretty chill for the past couple of weeks. Landon has been doing so great with his trach out! He enjoys listening to how loud he can get and talks non-stop. I love that he isn't restricted anymore.
We have, however, been experiencing some changes around here. Since Landon is doing so well without his trach, I've decided to not have the nurses go to school with him. Since there isn't a threat of a trach being pulled out or needing suctioning, there isn't really a point in them being there. The school nurse has other children at his school with g-buttons, so she would be able to handle if something was to happen with that. Plus, a g-button isn't really life-threatening so a school nurse is perfectly capable of handling it. :) However, the nurses not going to school has created a snowball effect of changes.
First, Landon's school time is in the middle of the day. From 11:45 to 2:45. So this creates a problem with Heidi getting a 40 hour work week since she doesn't want to have to make several trips to our house in one day. Without boring you with the details, she might not be able to stay with us anymore. :( It makes me incredibly sad and happy at the same time. Happy that Landon doesn't need nursing as much anymore, and sad because Heidi has been with us for almost 4 years! It's always sad to see someone move on that you care about. But we both look at it as a good thing. I know I'm so thankful for Landon's health and that he is doing so wonderful!
So, next week it will be official that Landon will go to school without a nurse. It's awesome and scary...like everything else has been the past couple weeks. It's a change we have to get accustomed to.
We had an opportunity to try out the new scenario today because Heidi came down with a stomach bug. Landon went to school like a big kid today without Heidi! It was weird dropping him off, but he handled it like a champ and was excited to get to play with his friend, Jonathan. That's all he talked about all the way to school. :) I left school feeling a little anxious, but ignored it because I knew I had left him in capable hands. His teacher is amazing and wasn't worried at all when I showed up without his nurse. If she was nervous about me leaving him, she didn't show it. That comforted me.
So, we aren't totally sure what's going to happen with the nurses for at home. Since Heidi may or may not be with us anymore, we would either have a new nurse or not at all. I'm pretty confident that I can handle both kids on my own, but there are some days that it would be helpful to have a second set of hands. Like on days I have to get Landon to speech therapy at 9am. It would be extra challenging since King Landon doesn't like to be rushed! ;) So, I guess we'll see what happens. Whatever ends up happening, life will go on and I will survive.
We went to see Kim last week for therapy. She was going through flash cards with Landon working on his "s" and his "t" sounds. She was even doing some "sh" and "ch" sounds. She said that he pretty much has all of those except his "ch"!! Thankfully, we just did a test on him about a month ago that told us whether or not he qualified for speech services anymore because Kim says that if he progresses the way he has in the past 6 months he may not need services by the summer! Who knew?!? I thought we would be in speech therapy until he was 10! I never saw the light at the end of that tunnel! She did, however, say that there were ways around that. If it is because of a medical condition that he is not able to say his "ch" sounds (which it is) she can state that. Or if he gets out in a open room and becomes quiet when he talks (which he does right now) she can use that as a way to keep him getting services. Otherwise, if he catches up on things, he may be released from therapy! We won't know for another 6 months when we test him again to see if he qualifies.
Talk about a snowball effect, huh? I knew that the trach was holding him back in some areas, but it's only made me aware of how much it held him back since he's gotten it out and is showing us what he can do. Who knew??
The picture below was my attempt to get the kids together for a Valentine's picture...this is the best one I got. You can only imagine what the rest looked like. :/
We visited Dr. Troia for an eye exam for the first time in a while. I think the last time we went was in July. Heidi and I were nervous and excited to see if there had been any changes in Landon's eye sight. We had been pretty diligent about putting on Landon's pirate eye patch but we have slacked off a little in the past few months. We weren't sure if what we had done would have changed anything all that much.
The last time we saw Dr. Troia, we talked to him about Landon's left eye. He has a lazy eye, so he needs the patch to strengthen it. He had told us that Landon's left eye turned in at a 12 degree angle. He said that if we didn't correct it by the time Landon was nine years old it would stay that way or we would have to do surgery on his eye to correct it. Ugh! Not another surgery! So, Heidi and I vowed to each other as we left that appointment that we would remind each other to put on the eye patch as much as we thought about it.
We did great! We put it on him and he would wear it for several hours one day and another it would only last a half hour or so. But we figured anything was better than nothing.
When we went back to have a follow up with Dr. Troia, he dialated his eyes and took a really good look. He said that his eyes looked really good!! The turning had gone from the 12 degrees to 8 degrees!! That's awesome!!! We were excited that the patching had worked! So, we're patching every day. We're going to try and put it on whenever he has to focus on something, like playing a game or writing or even watching tv. That way he's working extra hard to focus.
Wish us luck! Maybe next time we can cut 8 degrees down to 4! :)
Landon is four and a half years old. So for four and a half years Braydon and I have been doing whatever we can to make his life better and do the right thing by him. Every decision we have made is for his best interest. We've spent hours upon hours going to doctors visits and therapy appointments. All to make his life better.
Landon hasn't had it very easy in this life. He's seen more operating rooms in his short four years than many of us will see in a lifetime. He started out that way and it hasn't changed. It's become our normal. People say to me, "You talk like it's normal." Well, it is. To us. We didn't know any other way till Sydney came along.
July 5, 2007
The start of it all...
Starting out on July 5, 2007, Landon was a different child. We never saw him as different, but other people liked to remind us every time we would take him anywhere. Braydon actually had someone at a store stop and ask him a couple weeks ago if Landon was going to "make it". Braydon just laughed. Of course he's gonna make it! He's already made it! If you only knew, sir. If you only knew all the things Landon has endured. He HAS and WILL make it!
When Landon was one month old, his doctors in the NICU at Children's Hospital talked to us about putting a tracheotomy tube in Landon's airway. He had failed many attempts to take a breathing tube out of his mouth, and they wanted him to have a better quality of life. And so did we. So we agreed. We thought that this trach journey would end a few months or a year later. We had no idea. It was wishful thinking.
One month old
Not too long after he got the trach put in.
We put off family vacations because of all of the machinery Landon required to lug around. There was no way we would've enjoyed ourselves anywhere while worrying about Landon's well-being. We couldn't have the neighbor's kid come and watch our kids so that Braydon and I could have a date night. I'm sure the neighbor's kid wouldn't know what to do with a trach (or if they had ever seen one). We couldn't even have a sand box or go to the beach because, as we all know, sand gets everywhere and it's a trach patient's worst nightmare. Very dangerous if it got in the airway! Not to mention water! Bath time is the only time Landon has gotten to play in the water. And that was very restricted until he was old enough to understand the dangers. That trach limited a lot of what we could do as a family.
But don't feel sorry for us. We've grown to love Nebraska and staying here. Landon is pretty much a local celebrity. He's got friends everywhere. Many of them we don't even know. At the hospital. At school. In the neighborhood. Everyone loves him once they get past his physical differences. We've learned to find things to do that don't require sand or water. Braydon and I have worked our "date nights" into a breakfast or lunch so that the nurses could be here to watch Landon. We just kept telling ourselves that we would have the best family vacation any family could possibly have once he was safe without a trach. We've made the best out of a bad situation BUT....
Now we don't have to worry about ANY of this! LANDON IS NOW TRACH FREE!!!!!!! YIPPY!!
We've known for a while that Landon was okay with breathing on his own without his trach. We knew that from capping it off. We were pretty sure but not positive that he was okay while he was sleeping from the "results" from his sleep study. (I'm not sure if I shared that information on here, but Dr. Quinlan said what they got "looked good".) So, on Sunday night I noticed that Landon's trach was out. We had seen Sydney have a hold of it earlier in the day, but weren't sure if she had tugged on it. We didn't even think to look. He had done everything he normally does during the day...including a nap. Braydon took him into the ER and they took a look at him. He was doing so great that Dr. Quinlan and the ER doctor decided to just leave it out and monitor him overnight.
The next morning, without setting off any alarms all night and keeping the oxygen in his blood where it should be, it was safe to say he didn't need it. We still have concerns about when Landon gets sick. We do know that his tongue swells so it is something that we will have to keep a close eye on. We have a machine at home to check the oxygen in his blood to make sure it is at a safe level. Dr. Quinlan assures us that the first cold after any trach patient has been decannulated is rough because they have to learn how to manage everything going on in there. We're hoping that Landon will do great, but only time will tell.
So as of now, we have no trach! Landon has been doing so great without it and loves to show people. We told Kim today when we went in for therapy and she was so excited. We then had to sit down and rewrite pretty much every goal we had just made for him a couple weeks ago. That's okay though. I would rather have it this way.
Saying goodbye to an old friend :)
So, to the man at the store...."HE MADE IT!!!!" :) The next question is: "What beach should we go to first??" Hahahaha!!
My wonderful husband turned another year older about a week ago. After all the celebration, we all got hit by one mean cold bug! We're all just starting to get back to normal after sniffly, runny noses and coughs galore! I'm so glad to have happy kids again! It's no fun taking care of sick children. It just tears at your heart strings.
Anyways, so on Braydon's birthday we had plans to go out to dinner and have some fun, but since Landon had a fever, we decided pizza was a better idea. So a double decker pizza from good ol' Papa Murphy's came to our rescue that night. :) Followed by some birthday brownies.
Daddy taking his birthday nap. :)
We made Daddy some birthday brownies, gave him some love, sang "Happy Birthday" and blew out the candles...
Daddy with his kiddos
Landon wanted to help Daddy blow out his (9!) candles
Sydney thought it was a cruel joke to smear brownies on her face...