Surgery Day

Well we are all settled in and getting ready to go to sleep. It was an early morning for us and its been an even longer day. We got him back into surgery around 10:30 this morning. It was about two hours until we saw Landen again in the PACU and we waited with him until we got to our room. Surgery went very well we were happy to find out that after reviewing Landen's gait analysis we had done last week and reading their report he was thinking that we may not have to do a cast all the way up his leg. He wanted to wait until Landen was completely relaxed and out to do another evaluation and see just how tight he was when he wasn't fighting back. In the end he decided to cast his legs below the ankle (one blue and one green because Scott and I couldn't agree on colors) and then use knee immobilizers to keep his legs straight. This is a big advantage we have been given permission to let him out of the immobilizers to either sit or crawl for a short time each day which will let him get his wiggly's out. But most of the time including sleep time he will need the immobilizers. Even after we take the casts off in 4 weeks or so we will hopefully use the immobilizers during bed time and nap time. 

Landen has spent the day mostly sleeping waking every once in a while to either play and giggle a little or complain letting us know he needs more pain killers. In all  he has handled it very well needing less pain meds then we expected. We are still waiting for him to be more awake and see how he feels then. Two of my brothers visited and kept us company but now its just Scott and I. Tonight both Scott and I are hunkering down in Landen's room and getting ready to sleep. 

It was a very emotional day for me but I'm very proud of the fact I only cried a few times. Its good to see him doing so well but I sincerely wish we didn't have to do this at all. We still have several weeks to get through while he heals and recovers and then we are not sure how rehab will go. There is a chance depending on his strength of them bringing him back here to do impatient rehab after the casts come off. I'm praying that it doesn't come to that I would much rather have him home working with our PT in Logan outpatient. My sweet little boy how much I love him. Its hard to see him in pain and its hard to see him laid up like this. I just keep reminding myself that this is for the best. After we get through these few weeks and he is walking more comfortably it will be worth it. This is just hard. This disease is hard, the many ups and downs are hard, sometimes it feels like its mostly downs. Sometimes it feels like so much work and tears and frustration. But my little Landen is worth it! I love him so very much. 

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Landen is having surgery

In just a few hours I will be waking Landen up for the long awaited tendon surgery. He will be having his hamstrings and Achilles tendons thinned to allow them to stretch and his legs to straighten. I've been a bundle of nerves all week. We put it off until I was done with finals so that I would be 100% available for him. I know we are doing what is best for Landen he loves to walk and he loves to play and this will help him stay mobile for longer. We took him last week to Shriner's in Salt Lake to have a gait analysis done before surgery. (they basically took video of him walking focusing on his legs as he walked) We did this for two reasons. It helps the surgeon to make sure that he has come up with the best plan for his surgery and also so we can do it again afterwards to prove that the surgery was necessary and helped him. It was so bad they had us strip him down to his onsie so they could see his little legs and had him walk. First with no braces the poor little guy walked so high up on his tippy toes it would make a ballerina jealous and at the same time his knees were extremely bent and he was hunched over like an old man. It looked painful but he still walked up and down the room. Then they did it with his braces on and still he walked up on his tip toes hunched over. It was so hard for me to watch. Even the PT who was running the exam had a hard time it looked so uncomfortable. There is no doubt in my mind that this is what is best or at least it there wasn't when we first made the decision to do this but as the days have gone by and it gets closer and closer I'm so unsettled. Okay so I still know its the right thing but I just worry. Its painful and he will have to have casts on both legs for four to six weeks. I don't want to put my baby through this. Yet I want to see him able to get in his walker and cruse the halls again. He loves walking so much. Keeping him mobile is good for his health. This week has been so emotional up and down. I could be fine just one moment walking through the grocery store and the next crying in my car because I'm so worried about my baby boy. Its been a long week for me and the wait is almost over. I think one of the best distractions was reading through the wonderful cute cards Landen's kindergarten class sent home with him today. They are so cute and so sweet my sister and I sat down and read them to each other it was just the funniest strangely calming activity. We were  both just in stitches over how cute they were.

We check into the hospital at 8:30am surgery is 10:00am. Surgery will be at Primary Children's Medical Center in Salt Lake. I'm not exactly sure if I can sleep. We are planning on a stay over at the hospital at least overnight but who knows. I was told for the first week Landen cannot sit or move so we have set up a bed for him in our living room where we will be able to easily care for him and keep an eye on him until he is a little more independent. I have asked but have been given no idea how we are expected to keep such a energetic wiggly child still for a whole week. I feel so unprepared for this. It will be a long two months until we are able to see how this surgery benefits him. I will have plenty of time to keep everyone updated to his progress and maybe fill you all in on whats going on in our lives as I sit with Landen. 

We can use all the prayers and good thoughts we can get for tomorrow. I have not doubt its going to be a hard day and a very long morning for all of us.

Vacation

I thought since I was in the middle of going through vacation pictures it would be a good time to post. We just got back from our "summer" vacation. When we found out there was a good chance Landen would be having surgery and out for a little while we decided it was time to take a family trip now instead of later. We don't know when or if we will have a chance to do this again.

Right now Landen is healthy and happy but we don't know how long it will be this way. Brayden is at a great age for making memories. So we decided to make this a vacation to remember for all of us. We have made trips before but only for medical conferences and such so this was our first real family vacation where we had nowhere we had to be and could completely relax. We decided to go to California because it is relatively close and from there ideas started to come. We settled on Legoland in Carlsbad and found a great deal that allowed us to have fun in the park and spend time at the beach. It was the perfect time to go when all the other kids are at school and the park was nice and quite.

We had so much fun! Even Landen had fun riding the rides. It was nice since the rides are a little lower key that Landen rode almost every ride with me. He even rode Brayden's favorite dragon roller coaster and loved it. They were very helpful accommodating him on every ride which made stress free for all of us.We were able to keep him in his chair up until the moment we boarded a ride and take him right off. Brayden of course enjoyed all of it! From the moment we boarded our plane in Salt Lake all he wanted to talk about was Legoland. He LOVED the rides and the Legos and the food and the entertainment. He was such a ball of fun and excitement the whole time.

In the end I think Landen enjoyed the hot tub at the hotel and the beach the most. He liked crawling through the sand and feeling it on his fingers. He rubbed it in his face and ate it when I turned my back on him. I don't know how none of it ended up in his eyes! He liked exploring and feeling the cold wet sand and going back to the dry soft warm sand. He loved hearing the sounds of the waves and the wind. Oh the ocean breeze... if Landen could live in a wind tunnel he would be forever happy. He loves the cold wind. Sensory wise it must be amazing for him it gets him excited and he waves his hands, sticks out his tongue and laughs. Brayden loved the beach as well chasing waves and seagulls. He was a little to fearless playing in the ocean with daddy but he had so much fun. We had perfect weather and made so many memories.

After a few days in Carlsbad we went to Long Beach and meet up with Grandma and Grandpa Sinex.

Then we all boarded a ship for a four day cruse. We were able to find an amazing deal that made it possible to all go together. What a great thing for our kids to be able to spend time with their grandma and grandpa. Brayden was just buzzing with excitement. We kept it nice and relaxing. My favorite part of the cruise was snuggling with Landen while watching Brayden play in the swimming pool. Landen didn't enjoy the pools very much they were too cold for him. Even the hot tub was too cold. But he did love the LOUD music and snuggling on a deck chair. At first we tried to avoid loud music thinking with his CI he wouldn't enjoy that at all but it turns out we were wrong. He loved the loud music. He would wave his arms and laugh and bounce along. He also enjoyed crawling on the less crowded pool deck while Brayden played on the slides. He liked the breezes of course as we sailed along. It was definitely a memorable trip.

Its hard to explain what this trip meant to me. There is such a short time that we have Landen and he is healthy enough to do something like this with us and enjoy it. It really was one of the first times in a long time that I was able to put aside all the doctors, all the therapy, all the stress that comes with having a sick child and solely focus on nothing but making him happy. I didn't take a single phone call or email from his school or doctors office. What ever they needed would just have to wait until we got home. Its easy for us to not do things like this when we think of all the extra work. We have a wheel chair and walker a special car seat he needs even on the plane. It took two bags to get all of his medical supplies to California. Just think about it his formula which comes in 8oz containers four a day for 10 days plus extra in case of emergency I ended up packing 52 formulas the bag was so heavy. Its these things that make us hesitate when deciding to do things. No camping trip or getaway is ever just easy. But despite that we did it and it was worth it! It was so worth it for 10 days he was just Landen and we were just a family out to have fun.

We didn't worry about what was coming or where we needed to be. We didn't rush to appointments or worry about therapy. We just had fun! It was so easy to be in the moment and not have the nagging voices and tears I shed for my little boy. I held him in my arms and snuggled him close on that deck chair and didn't even bother to whisper my constant "please don't leave me" prayer. I loved it. I soaked it all in both Landen and Brayden. Two happy little brothers having fun together with their family. Brayden taking care of his "little Big brother" pushing his chair and making him laugh. How amazing was that? How normal was that? Even with the two bags of medical supplies ;)

We Survived the Flu!! It was a long January...

We'll we got hit really hard this  year when it came to the flu, colds and every other cold time illness. But we have finally caught a break and everyone is happy and healthy again. I'm not missing the hourly fever checks or the worry over Landen's breathing. The terrible croup and the even worse puking. I'm So glad to say its all over! (at least for now)

This mild weather makes me want to declare it spring and start in my garden but since its just February I guess I can wait longer. I'm starting to give up on ever having a winter (sad face). Our sleds and mittens went unused. The hot chocolate industry took a major hit and we hardly made any soup.  I really miss the winter weather. I love love love snow. I'm not one who tires of it after a few weeks and prays for spring. If I have no where to go I can snuggle up in my warm home with my family and enjoy the winter.

Needless to say we survived winter and we are preparing for spring. This spring is going to be a busy one for us with both good and bad so look for many updates in the near future. I will do my best to post both the good and the bad. We are just weeks away from finally getting Landen's wish granted from  Make-A-Wish, we are planning an amazing family vacation and Landen probably will be having some big surgery/procedures coming up. My last post I mentioned his knees and how bad they had become. We did the botox and didn't see as much progress as we would like so now we have to start looking at other options. We have a few options from more botox to surgery. At the same time we got the report back on some of our x-rays we had done only to find out that his hips witch were showing small problems with not being formed right in October 2013 have worsened. Landen now has significant enough hip dysplasia that we are going to get a surgeons opinion. Until that time we will not know what is going to happen. Chances are high that we will end up having surgery but if it can be avoided we will. But if one or the other surgery has to be done (hips or knees) we will probably do them both. It wont be fun at all and will be a long recovery but our goal is to keep him up and moving and using his walker while he is still healthy enough to and strong enough to do it. He loves to use his walker and to get up and walk which is also good for his heath in many ways. It strengthens his muscles and bones and we really want to keep him moving. I will do my best to keep everyone up to date on what is going on.

Thank you all for your love and support!

FLU

I know I haven't posted in a very long time but now seems like a good time since we are all stuck home with the flu. Brayden had it over Christmas, I've been sick for several days and Landen woke up yesterday really sick. It's been a long two days with Landen sick. Yesterday we took him to the ER since the clinic couldn't fit him in and his fever was getting out of control and he couldn't keep any food down. He was puking up everything we feed him including his meds. Without his steroids his body was not going to be able to fight any illness. We were there for a long time running tests and giving him fluids. Turns out its a strain of the flu that is going around. They gave him some anti nausea medicine and some medicine to help with the flu and sent us home finally. He is very sick but as long as we can keep him hydrated and give him his meds at home its a much more comfortable situation. Last night was a really long night his fever goes up and down and he is coughing up a ton of yucky mucous. Today has been kind of the same high fever, hard breathing, lots of yuckyness but manageable. We never know how Landen is going to react to an illness Brayden was over it in few days but poor Little Landen is really struggling. So not much for us to do but sit around and take care of him. He likes to be next to me so we have set up on the couch him on one end and me on the other. Poor Scott and Brayden and pretty bored with our forced confinement but we will get through it.

Other then the flu things have been very busy for us. Both our family and for Landen. I started back at School this fall (which explains the lack of any blogging, been way to busy) Scott also was going to school and started a new job. Brayden is attending head start and Landen goes to school at Garland Elementary now. Having him at the Elementary is wonderful one because its less then a mile away and I can run there at a moments notice to help with anything. And two because they have set up an amazing program for him there. The teachers have been outstanding and we have really enjoyed working them and look forward to the rest of the year. 

Landen's biggest concerns right now are with his knees it seem like out of no where is knees suddenly started tightening up. Landen does a ton of walking at school in his walker and spends time in a stander at home to help fight bone density loss. But he first started dragging his left leg because he couldn't straighten it then his right and with in just a few weeks had developed flextion contractures in his knees. We saw his rehab specialist at Primary Children's (one of my favorite doctors ever!) and he confirmed that yes he does have flextion contratures but his tendons are so tight that he can't even tell how bad the contratures are or even if they are adversely affecting him at this time. So we need to deal with the tendons first. Landen can no longer straighten his knees all the way and was loosing more range of motion keeping them constantly in a bent position. We opted to go with a botox treatment first with some additional stretching to see if we could loosen them up before we consider other options because other options jump immediately to full leg casting or surgery, probably both. It will still be a few weeks before we know if it is working. Really other then this he has been healthy all things considered. We  have been blessed with a quite couple of month medically no illness (until this flu) no surgeries, no real problems. I guess if we end up having to go through more invasive treatment for his knees this will change but for now we are happy with the calm. Just praying this flu runs its course without any major complications. I wish I could say we are out of the woods but you just never know with a complicated kid like Landen. So for now we'll just let him sleep.

Little Landen is Six!

Oh my Little Boy how much I love you! My Little Landen turned six today! Such a big moment for us today was such a good day he seemed so healthy (all things considered) What a blessing the last six years have been. Right now is the healthiest he has ever been. Every year... every day with our boy is a big deal for us. We took him out on Tuesday to celebrate with the family since Scotty had to work. We had a lot of fun going to lunch and swimming. Landen loves to swim and the sun shone just for him. I was worried we wouldn't be able to swim because of the rain and thunder all week but it cleared for him. Brayden had so much fun making Landen's cake. He picked the flavor and the color and all the candy. He stirred and frosted and decorated it just for Landen. Its so hard sometimes trying to find ways for my boys to spend time together. Brayden is 4 and full of life and energy but he just doesn't understand Landen's limitations. I know he loves his brother but they are so different and far apart in development that it makes it hard for them to interact very much but I try.

Things are going so great for my boy. His weight has leveled off at a healthy weight for height. Yes he is a skinny little guy on the low end of healthy but its been years since he was even in the healthy zone. Of course he is extremely small people are always shocked to find out that he is six but with all the lifting and carrying we do his size is a blessing too! He hasn't spent much time in the hospital since his tonsils were out. We go in every few months to get the scar tissue around his g-tube removed surgically but its been a very minor procedure for him. He is finally wearing his cochlear again. I don't know why but after the tonsillectomy he just wouldn't wear it. He screamed like he was in pain every time we put it on. It took weeks of me sitting with him several times a day and putting it on over and over again while I just talked softly till he started to wear it again. I can see him enjoying it again. Sometimes he is still a little grumpy when I put it on but as soon as I start talking softly to him he is fine.

The joy and happiness he brings is so wonderful I love how much he laughs all day (and often all night). I'm not even sure half the time why he is laughing. He smiles and squeals as he climbs on top of your head to eat your hair. He loves to lick my face and hug my head. He has more energy then he has ever had in his life. I can see him progressing everyday. Wishing he would be healthy and happy forever. I'm excited to see what the next year brings.

10 Days Post Surgery

We are officially ten days post surgery and finally seeing Landen feel better. We have even made plans for him to return to school on Monday. Its been a long week for us. Landen obviously was in a lot of pain after the tonsillectomy and we had to keep him on pain killers which made him sleepy. Monday was a traumatic day for us. Sunday night Landen was bleeding a little bit, not much just a little. I told Scott that if he was still bleeding in the morning we would call the Dr. Sometime around 4am Landen was fussing so I went to pick him up and comfort him. I was rocking him in the dark for a few minutes and when I turned on the light I noticed my shirt had several bloody spots on it. I went back to the bedroom and turned on the light and the sheets and pillows all had blood on them. I called the ER in Logan and spoke to the on call ENT and he told us to head to Logan. We go there and the bleeding had completely stopped. The ER doctor asked us to stick around for a few hours just in case because he said "I hate for you to get to Beaver Dam and he starts bleeding again." So we did two hours later still nothing. Our ENT made us an appointment to come see him in office later that afternoon and we headed home. We got exactly to Beaver Dam (halfway home) and Landen started bleeding A LOT! It was enough to tarrify me even though our ENT told me over and over a little blood goes a long way. But trust me it was enough to soak through his PJ's and run all over the car seat. It really scared me. I will admit I'm not good in stressful situations, I'm not a nurse and I could never be a doctor so I panicked! I rushed as fast as my car could go back to Logan. I was present enough to think and call the ER as I sped into town so by the time I was at the hospital they already had a place for him in the OR. The procedure went fast and he was able to find and stop the bleed. I guess sometimes they get in there and can't find it. We ended up spending the day in pediatrics for observation and going home Tuesday morning. Landen has recover quite quickly from Monday's scare and feeling good. So although its been a long few days for us we are doing much better and hope soon to be back to our normal daily life again.

Must give our thanks for all the thoughts, prayers, phone calls and support we have received over the last week. Thank you to our families for chipping in and helping out and keeping me company while I keep Landen company at the hospital. And a big thanks to the AMAZING nurses at Logan Regional Hospital. We LOVE the nurses there. I prefer to go to Logan rather then go all the way to Primary's in Salt Lake. Don't get me wrong I love Primary's they are also amazing but its so nice to go to Logan and get the same room and the same nurses who remember us from our last stay. We have had 4 hospital stays in Logan just in the last 12 months and we have gotten to know some of the nurses very well. They remember Landen and they remember his likes and dislikes and often he is the only pediatric patent they have so he gets plenty of attention.

Thank you all for your support! Crossing our fingers its a long time before we have another hospital stay and Landen continues to grow strong and stay healthy. Plus I hate sleeping on hospital furniture!

Waiting for the original surgery.

Happy Boy

This is what it takes to keep a boy happy and pain free after surgery

Resting at home :)