Tuesday, October 27, 2009

Tears at the petting zoo....

Hi everyone! I hope your weekend was a good one. Braydon and I celebrated our 4 year anniversary last Friday. I can't believe it's only been 4 years! Some days it feels like more. ;)

On Saturday we planned on taking Landon to a local petting zoo that was having a Halloween celebration for the kids. It was only $5 to get in, so we thought...why not? Although it was during Landon's naptime we decided to see how he would do and took him anyways. As soon as we got there we realized why we don't do anything during his naptime. If we didn't do exactly what he wanted to do he got upset...hysterical crying...no fun. So that meant that we spent about an hour trying to keep him entertained without getting upset. Even if it meant that we walked up and down a hallway for 10 minutes....whatever will make him happy right? Ugh! We finally made an executive decision to leave. Before we did we found a little area where they had some ducks. Landon loves ducks and can actually say "duck" and "quack". I figured he would like them and we went over and said hello. He was confused at first because he had never seen a duck in real life. After they quacked at him and a little coaxing from me and Braydon, he finally got it and had fun watching them in their little ponds of water. As soon as we made it back to the car, it started raining and Landon fell asleep before we left the parking lot. I've never seen him so tired. :) Here are some pictures we took...Landon got to wear the top of his Halloween costume (he's a dragon).

Other than that, our weekend was uneventful. Monday was a slow day. Chelli had to cancel therapy with us cause her kids were sick. We just stayed home and enjoyed the day off. Today we went to see Ashley. She worked on more button pushing with Landon. He's really catching on to what he's supposed to do. He's choosing from about 10 different objects that don't even relate to each other, which is awesome for his age. Eventually we will have one for him to use at home with us to help with his communication.

Tomorrow is more Speech therapy combined with Occupational therapy. I've been keeping a food diary for Landon over the past week and a half to see how well he's eating. We noticed him eating more so I started measuring and writing it down. We can give this information to Dr. Zapata's office and the dietician can tell us whether or not we can back off on giving Landon so much Pediasure. He may not need the extra calories he gets from it since he's eating so well. We'll have to see... I'll turn that in to Chelli tomorrow so she can pass it on to Dr. Zapata. It will be good to see what they say. I'll keep you posted!

Monday, October 19, 2009

Something new!

So, I've noticed while I'm writing these blogs that I've been spending a lot of time talking about the people that Landon sees for doctors appointments and therapies and reminding you of who does what. So I decided to add a list of the doctors on the right side of the blog. That way when I'm talking about someone and you aren't sure who they are, the name is there with what they do. Hopefully, this will save me some time from repeating myself and from you having to read it over and over. :)

Mondays are awful...this one got better...

So....today was actually not as bad as I thought it was going to be. I was super nervous going to sleep last night, but the lack of sleep from worrying helped me to get to sleep. Otherwise, I was going to be awake all night making myself a nervous wreck.

When we got to the hospital this morning, the nurses were so nice and comforting to us and didn't mind giving us an update on Landon every 30 minutes. I spent some time with one of the nurses going over some tricks of the trade when dealing with Landon. I told her how he loves to find exit signs, his Mickey Mouse (which we didn't leave home without), and the movie "Cars". She took the info I gave her and ran with it. She then informed the other people taking care of Landon about what I had told her. One of the ladies that was going to be in the recovery room with him (since they monitor him for 30 minutes before we even get to see him), came in to introduce herself and told me that they were going to have "Cars" ready so when he woke up he could watch it in the recovery room. Children's doesn't allow you to go into the operating room with them when they are being put to sleep. Not sure why, maybe it's a liability?? Anyways, so when the lady came to take him she didn't even give us time to make a big fuss. She came in and told Landon that they were going to look for the exit signs in the hallway. After giving Landon hugs and kisses, I plopped him on the bed and told him he was going for a ride on the bed and to show Mickey all the exit signs. He nodded yes and off they went. When Braydon and I peeked down the hall, the lady was trying to make the exit signs sound as exciting as she possibly could and all you could see was the back of Landon's head just looking around for the exit signs. He was so cute! I'm glad he didn't have time to cry and make a big fuss. It definately made it easier on me and Braydon and DEFINATELY on Landon! Thank goodness for wonderful nurses! They are soooooo underappreciated!!

So the plan for Landon today was to have Dr. Quinlan do his broncoscopy first, the hearing test second, and the MRI third. The whole thing was supposed to last about three to four hours. After the first hour or so, Dr. Quinlan came in to talk to us about what he had seen. He brought in pictures that I didn't completely understand even with him pointing things out on them. He showed us a picture he had taken of Landon's tonsils and told us that they were very large and would need to be taken out at some point. He also talked to us about the little blood filled polyps on the front side and top of Landon's tongue. He said that the best option for those (since they bleed a lot) were to just try to remove them. He said it wouldn't take them away completely since he wasn't sure about what was going on on the inside of his tongue, but could possibly help. Other than that, he said that everything in his airway looked very nice and that after the tonsilectomy, we could talk about when we can get the trach taken out!!!!!! I think Braydon and I had to chew on that one for a little while because we had to reiterate to each other what we thought he said after Dr. Quinlan left the room. It was so nice to hear. We had made a plan to try for the tonsilectomy for the spring.

The hearing test went well. The audiologist (the lady that tested Landon's hearing) said that he had small ear canals which we already knew. Even with the small ear canals she said that she felt his hearing was fine. She tested him with high pitches and low pitches which were both normal. When she tested the mid-ranged pitches she said there was a very mild hearing loss, but didn't feel that it would interfere with learning how to talk or his progress from here on out. She actually shared with us that she has the same problem in her ears and she seemed pretty normal to me. :) She also informed us that the responce from the sounds made in his ear when traveling up his brain stem were slowed. This is a side effect from what happened in Denver. Overall, the hearing test told us what we already knew. She said we didn't need to get it repeated, but would love to stick him in the sound booth when he gets a little older just to keep tabs on him.

The MRI we don't have any information on. They normally take a day or so to read anyways, so we weren't expecting to get results today. We aren't even sure when we will get results or who will call us about them...but hopefully no news is good news. :) We have to go see Dr. LaCroix in a couple of weeks anyways for a follow-up so maybe she will know something by the time we see her again.

Today was definately stressful, but in the end went really well. I'm getting to move past my phobia of putting Landon under anesthesia again, and we won't have to worry about doing anything else until the spring! Landon woke up a little aggitated with a little pain. After we got him a dose of Tylenol, he was content just sitting watching "Cars". When we got to take off the blood pressure cuff, the oxygen monitor, and get the IV out, he was so happy walking the halls with us. He was the same kid we came in with. :) We'll have to start calling him the "Comeback Kid" cause he bounces back from all of these procedures so easily (with the exception of May...that one took a little longer). :)

Braydon and I are so thankful that today went so smoothly. Thank you to all of you that sent me text messages to let me know you were thinking of us. I'm so glad that I have such awesome family and friends that support us with so much love. Thank you, thank you, THANK YOU!!!!

We love you all and hope you have an awesome week!!!!! I'll put up more pictures soon! XOXO

Saturday, October 17, 2009

The doctor said....

We took Landon in to see Dr. LaCroix on Friday. She was excited to see all the progress that Landon has made since the last time she saw him. We talked about the procedure on Monday, and she reiterated to me how important it is to get this done. She is very eager to get the results from the MRI to make sure there isn't anything serious going on. She didn't think there was, but she wants hard proof (as do I). She comforted me in telling me that Landon is perfectly healthy. I guess we've been doing well keeping him away from the nasty swine flu bugs. :)

We aren't doing much this weekend...just hanging out as a family and spending time together. Hope everyone has a nice weekend. I'll let everyone know how Monday goes and what the doctors say.

Thursday, October 15, 2009

I know...I know...it's been too long!

So, I know it's been a while since I've written anything on here. I'm sorry for that. I've been a bad blogger. :) We had so much going on in the month of September that it was hard to keep track of everything! As some of you know, we moved into our new house at the end of September, so most of the month I was spending my extra time packing. I hate packing and I hope we don't have to do it again for a very long time. And if we do, hopefully the air force will be packing it for us! :)

We are all loving the new found room we have in the new place and have enjoyed painting walls for the first time since I was in high school. I guess that's part of renting... Anyways, Braydon was a super unpacker and got most of our stuff out of boxes before the first week was over. I was very impressed because I pride myself on doing well unpacking, but Braydon was so much better than me!! :) I've included a picture of the front of the house before we moved in and before they put our sod down. I'll post another one after I take a picture...hopefully tomorrow. :)

Ok...going back a little bit, the end of August my mom came to visit Landon for the first time since "the May incident". She was very surprised to see how well Landon was doing walking around with little assistance. We had fun hanging out together and I'm excited for her and Paul to come out to visit again next month. Here are some pictures we took while she was here:

Landon has been doing really well recently. He's been walking around only falling every once in a while. He's been starting to catch himself when he falls which he wasn't doing before. He normally just falls over cause his muscles lock up. He has been getting a lot more control of his muscles in his legs as well as in his arms and fingers. His left hand is back to normal, doing the majority of the work. We're trying to remind him that he has a right hand and to use "righty" just as much as "lefty". He has started to use "righty" spontaneously in play and his occupational therapist has been impressed with the progress he has made with using it. We are trying to work on the use of his fingers on his right hand with pointing exercises and reaching. He's made progress, but still has some way to go. Right now, Chelli has been trying to get him to play with shaving cream and pudding to get over any sensory issues he may have. When we first brought the shaving cream out, he wasn't sure what it was, but has slowly warmed up to it with a little encouragement.

Physical therapy has been going remarkably well. We've slowed PT down to once a week to make room for Ashley (the speech therapist) to fill in that spot. Penny didn't feel like she needed to see him twice a week and felt that he needed more help in other areas. So we've been doing that for the past couple of weeks now. When we see Penny, the sessions have become more of a play time of going down slides and crawling through tunnels. I can tell that Landon enjoys that time a little more than he used to because he doesn't realize he's "working". He just looks at it as play time.

I had mentioned in previous posts that our insurance covered Landon to get one of the "Kid Walk" walkers to help him learn to walk again. We got it mid-September, but found ourselves not really using it because Landon didn't seem to need it. We told Penny how little we were using it, and told her that if there was another family that needed it to let us know and we would be happy to let them use it. Low and behold, the next week she said she had found someone!! She works with another little boy who has downs syndrome and is also trached like Landon with a G-button. She said that he is about the same age as Landon and is just getting the hang of walking. Penny had put him in the Kid Walk that Children's has in the therapy room, and he loved it. I brought in ours for him to use that following week. I figured that if we can't use it anymore I would much rather someone else, that doesn't have the amazing insurance we have, to use it. There's no sense in it just sitting around our house collecting dust! Penny told me today that the family was so appreciative and that the little boy is loving playing in the Kid Walk. I was so happy to hear that. :)

Anyways, Landon's been working with Ashley for speech over the last few months, but since we have switched to twice a week, we wanted to start working on some ways to give Landon some communication skills besides the sign language. Ashley and Landon's teachers have all expressed to me that since he isn't picking up as many words as an average 2-year-old, that we need to find a way for him to communicate so when he goes into preschool a teacher will be able to understand him without having to know sign language. Their idea was to start with showing him pictures of things he is used to and giving him choices to pick from. We put these pictures on buttons that say the word when he presses them. He's picked up on it really well, and Ashley has moved him up to 6 different choices. Eventually, Ashley would like to get him to make sentences with these buttons, if need be. Landon's teacher also suggested that we keep broadening his sign language vocabulary because it gives him another way to communicate. I guess some things we may have better luck with than others, so why not try them all?!

Last month, we went to see Landon's eye doctor to get his eyes checked. I was anxious to see what he said since Landon was doing so well with keeping his glasses on. When he looked at Landon's eyes he told me that Landon developed Accommodative Esotropia. It's a fancy word for when his eye focuses, it turns inward. So he gave us a stronger prescription in his left eye and told us to come back in a couple months. It should resolve itself with the stronger prescription. Keep your fingers crossed for that.

We are going to see Landon's pediatrician tomorrow for a pre-op appointment. We've been putting it off, but the time has come to have Landon's MRI done to check the progress of his brain. Dr. LaCroix wanted to do one as soon as we got back from Denver, but we told her we weren't ready so she was fine with waiting. So now the day is growing nearer. Monday we will be putting Landon under anesthesia for the first time since May. I'm speaking for myself when I say that I'm very nervous about it!! Dr. LaCroix tried to assure us that it wasn't the anesthesia that caused all those problems in Denver, it was the treatment, but it still doesn't make it any easier!!!! Especially since he's doing so well. So please keep us in your thoughts and prayers on Monday. His procedure is at 11 and shouldn't take more than a couple of hours. I'll keep everyone posted. Dr. Quinlan (the ENT doctor) will also be taking another look into Landon's airway, and we will also be conducting a hearing test while Landon's under, to omit any problems with his ears. Just as a precaution. Trying to get it all done at the same time so we don't have to put him under too much.

On a more fun note, we took Landon to the Omaha Children's Museum on Monday. They have something called "Carefree Kids" that they conduct 3-4 times a year. It's for kids that have compromised immune systems (like Landon and children that are in similar situations). They throughly clean the place from top to bottom so that these children can come in without the threat of getting sick. So we had a lot of fun exploring the museum. He had a lot of fun in the fire truck with dad and in the sticker car with me. He was doing a nice job of turning the steering wheel with both hands (I know...the little things). He found the farm very funny. They have statues of different animals and have buttons that say the sound of the animal. Landon found the cow and sheep one to be hilarious and stood there pushing it for a good five minutes over and over again. Hopefully the workers can tune it out. :) They also have a play house that is just Landon's size to play in. We explored that and found the refrigerator which was another repetitive open and close, open and close. We got him away from that long enough to take a picture on the little sofa in the play house...

Landon playing in the "bedroom" of the play house.

The infamous refrigerator...

Those cow and sheep sounds are just so funny...

Landon trying to spray the house but ending up playing with the water instead. :)

Well, we love you all and I'll keep everyone updated about Monday! Have an awesome weekend!! :)