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 :)

Landen is going for surgery tomorrow

So it really has been a long time since our last update. Landen is doing well he has gained over 7lbs now and getting bigger and stronger all the time. We have been feeling the spring and are spending some time outside getting the yard and garden ready. Spring is around the corner and we LOVE IT! Both the boys love to be outside. Dad is came home the day before Thanksgiving and is doing great! He is back to work full time and made such an amazing
recovery. Other then that our only news is Landen will be going into surgery tomorrow to have granulation tissue removed for his g-tube, a tube taken out of his right ear and his tonsils out. The granulation tissue is extra scar tissue that has formed around his G-tube. Its irritating to Landen and it tends to bleed a lot. we had this removed back in October and had it all under control but when he pulled his tube out in January and we had to have the hole stretched and a new tube placed (something you who just follow the blog may have missed because I've not been keeping up) it irritated the tissue and the granulation tissue started to grow again.

We were already scheduled to have the granulation tissue removed from his G-tube and since I hate to have Landen sedated for just one thing I contacted his ENT. His ENT has wanted to do and exam and remove a tube under sedation for awhile now but I asked him to wait until we were going in for something else. We went to our pre-op with the ENT when he told us that he is really concerned that its time we finally take his tonsils out. We would have done it a year ago but we were concerned with how we would keep him hydrated and fed for the week recovery. We didn't want to spend a week in the hospital if he decided it was too painful to eat or drink. Before with Landen even if it was a minor illness the first thing he would do is stop eating. Since he has the G-tube now the ENT really thinks they should come out his tonsils are almost touching they are so big. We have everything ready to go and we expect to be in the hospital for at least 24 hours probably more. Sometimes Landen does quick recovery sometimes he just needs more time. We will be at Logan Regional for surgery. I've opted not to go to Primary Children's because I love our ENT and this will be Landen's third surgey there and 3rd hospital stay we know they do a good job. We have a wonderful ENT who always tells us he looks at Landen as a unique case and follows his lead rather then expecting him to act and recover like any of his other patients. Prayers and thoughts are appreciated a little worried about controlling Landen's pain levels I have been told this could be a painful recovery even though its a minor surgery. I don't know I never had mine removed.

Seven weeks...

It will be seven weeks tomorrow since Landen's g-tube surgery and what a long and stressful seven weeks it has been. There was the initial mix up with formula that caused Landen to get backed up extremely bad. Then there was the "getting use to it" phase. Which was hard for both mommy and Landen. Landen wasn't use to getting so much in his tummy at once so we had to spread his feedings out and the slowly make them larger till we got to our goal of 4 8oz feedings a day. Then there was the terrible infection that sent us to the ER at Bear River Hospital and the ER at Primary Children's Hospital in one night. That was a terrible night full of tests and pain and no sleep for mommy or daddy. And last of all we have had trouble with granulation tissue (abnormal scar tissue that bleeds a lot and on Landen was very sensitive) in one side of the tube. So we were taking him in every three days to have silver nitrate treatments that were supposed to burn the tissue off but it just got worse and worse. After 5 treatments the surgeon we have been seeing in Logan decided it was time to surgically remove it. So today we were once again in surgery. It went really well they not only cut the scar tissue off from the side of the tube but inside the hole that his tube goes in. Then the cauterized it the surgeon believes this will most likely stop it from growing back. It was a quick procedure they did in the OR under anesthesia. But despite all the problems and stress I would do it again in a heartbeat! Why? This is why...

Look how much healthier this boy looks! Looking back at pictures over the last seven weeks and you can just watch his body heal and grow. More then 3.5lbs in seven weeks. And it isn't just looks... Landen is more playful, has more energy, eats better, sleeps better, more attentive in school and just plane happier (if you can believe it he was pretty happy to begin with). Part of this also has to do with the steroid treatment we started him on at the same time. The combination has done wonders. Landen is stronger, he is walking more, sitting straighter, not shaking as much and participating more in therapy. He is a new child! I just want to cry every time I see him get up off the couch and go play it makes me happy. Its hard always knowing that eventually this disease is going to take the life out of my child as he digresses and eventually it will take his life. But I feel like I got hope back. Honestly he was on a downward slope before this even if I refused to admit it at the time. But in the last seven weeks he has rocketed upward and it gets better everyday. The last seven weeks have been hard stressful and so very tiring on me but yet I have hope. I see my little Landen moving forward... and as long as he is going froward... as long as I see improvement it I feel hope. Landen has a good life, he is happy and loving in ways only you who have met him can understand. Today in recovery he woke from the anesthesia and started attacking me with hugs and licks all over my face (yes kind of like an over excited puppy). He charmed the nurses and tried his best to escape the bed they had him on. He wanted to crawl and explore the room he was in. I can honestly say it was one of the most joyful experience to watch him so happy and energetic. Full of giggles and love. I love my little Landen and am so proud to be his mommy!

G-tube

Its been a week and a half since Landen's G-tube surgery and things are going really well. It's taken us a bit to get use to it though. We ran into some problems right off the bat because the pharmacy sent us the wrong formula (it was without fiber) and it caused Landen to get really backed up. We tried all the usual tricks most of which are very unpleasant for Landen. His tummy finally got so big and tight that we ended up taking him to the doctor who recommended a mineral oil enema (I had already given him a regular one). It took forever to find one and when I didn't even that didn't work. The following morning we woke up to POO! YEA!! since things finally "got moving" again we have not too many problems. We got the right formula and are pretty regular. We did break his feedings into smaller and more frequent because the poor baby just wasn't use to having a full tummy and when he started to eat orally again he was so stuffed an would puke a little bit. But I think we are to the point where his stomach stretching and soon enough he will be able to tolerate full feedings and I can go back to four times a day.

I will say although doing this has relieved the stress I constantly had about Landen not eating enough, it hasn't gotten easier. It still takes time. We are bolus feeding (or gravity feed) that means that I have to put everything aside to feed him. He seems to be getting a scheduled. His "breakfast" feeding and his "night time" feedings or the first and last of the day he usually refuses to eat any formula (he does eat a little real food) so I do a full feeding. During the day especially if Scotty is home the "in between" feedings he will drink. So most part he does well drinking the formula and if he doesn't drink it all he only leaves me 2 or less oz left to feed.

Landen is getting a g-tube

Last Wednesday we had several appointments at Primary Children's and we had to make some tough decisions for Landen. Landen has been struggling lately with several things and backsliding. He was no longer using  his walker and eating less and less. He spent most of his day laying on the couch or sitting in a chair he just was lethargic and weak. He struggled through therapy and wasn't able to participate much. Our PT had to do more passive therapies with him (therapies that he would benefit from even if he wasn't actively participating) and we were not even making it through a whole session. Its easy for a mom like me to make excuses, Landen is sick, Landen is stressed, Landen is not eating well, Landen is having a bad day... But it took talking to people at the GFPD conference to actually admit to myself how bad it had gotten that Landen had a bad day everyday. I couldn't think of once in the last six months where I took him to therapy without an excuse as to why it didn't go well today. I was constantly calling or sending notes to school to let them know Landen was having a bad dad and wasn't feeling well. I see him everyday his backward slide was gradual for me. But for our friends who only see him once a year it was actually very noticeable. I think the biggest shock for me was when at our consult with the physicians they read off their notes they had written about Landen the previous year, what he was doing physically and how he acted, all the little things they noticed.... it didn't even sound like the same child. Landen was weak and shaky and his eating habits sporadic. He had lost weight which was the one thing I did notice you could see it when you look at him all skin and bones to the point where he is always bruised along his spine and hips because there is not fat between him and the bones. He just couldn't gain anything back after loosing it. And I know there are some of you out their who think I just don't try hard enough to get him to eat I've sat by his high chair for hours doing everything I could to force a few bites. I have tried to syringe liquids only to have to take him to the hospital for dehydration. Even if I could get him to eat and drink this way its too much! I have so much on my plate I have Landen and all that comes with being his mommy. I have a energetic three year old who deserves his mommies attention just as much. I have a house and a husband who need my time. My father is in the hospital and my mother needs support. I'm tired! I'm so tired all the time!

When I took Landen to his five year well check with a list of recommendations written by the specialist at our medical conference he agreed we couldn't wait to address these issues. He called in as many favors as he could and got us appointments the next day at Primary Children's. It was literally a full and tiring day of nothing but appointments and tests. But we were able to address Landen's issues.

First his shaking and lack of energy... his physical step backwards. I have had Landen's adrenals tested every six moths for the past three years and we have seen some weird things. Its hard for doctors to treat our kids because they are so different and in most cases Landen is the only PBD patient they have ever seen or will ever see. The doctors at the GFPD conference were able to take these test result in combination with his physical and medical decline and confidently say he was suffering from adrenal insufficiency and needed to start a daily steroid that would help his body compensate. They were certain we would see a major difference in Landen in just a few days. We saw a doctor at Primary's who calculated dosage and wrote the prescription and started it. It has made a difference. I noticed less then 48 hours after starting the drug his intention tremors stopped. After two days his appetite picked up. He is getting off the couch and playing again. He is not content to just sit all the time. The best was therapy yesterday... Landen's PT was just amazed at him. He said he had NEVER seen Landen do so well. We not only made it through therapy with Landen begging for more without resorting to passive activities but we were able to do somethings the PT didn't even think Landen would every be able to do with his weakness and low energy. We usually end therapy with a very tired boy who cannot hardly hold his head let alone stop his shaking. But yesterday we started strong and ended strong. Landen worked harder then he had ever done before.

The second thing we were able to deal with was Landen's loss of weight and eating issues. This G-tube thing may seem like it has been a sudden thing but I have been thinking about it for a long time. Landen has struggled to eat from the day he was born. From me spending the first weeks of his life syringing milk into his mouth because he struggled to learn to eat and every "feeding step" along the way has been just hard. The thing most people don't realize is that he is not only fighting his low appetite and his body when it comes to eating but its also a sensory issue. Landen is deaf blind which most people don't realize the complications it brings with sensory issues. Landen wont touch sticky things or get his hands dirty in most cases. I had someone explain it to me once that his hands are his "seeing and hearing" and getting them dirty is overload just like someone shining too much light in your eyes. Its uncomfortable and makes it had to see anything. As he has gotten older he has wanted to be more independent and sometimes will refuse anything I will feed him and since he will only touch and feed himself a very few things it leaves him eating only goldfish for dinner some nights. Landen doesn't just struggle with touching different textures but eating them as well. There are some textures that he just doesn't like in his mouth. Again because he doesn't see or hear well his mouth is a major way for him to explore his world. He won't eat anything that he can't put the whole thing in his mouth. There are times when he wont eat anything that isn't crunchy or pureed. He is lazy when it comes to chewing. He can chew and swallow but he doesn't like to. He has many tastes he doesn't like. Most everything these days has to be hidden under ketchup or spaghetti sauce. And there are times when he is stressed or sick he just won't eat. After returning from Denver Landen didn't eat or drink for 6 DAYS! It was so stressful for us we were only able to get him to drink enough to keep him out of the hospital but he was still getting dehydrated and getting almost no nutrition. This is getting more and more common. So we have decided to go forward with the G-tube. this doesn't mean Landen will stop eating. In fact we will still encourage him to eat as much as possible. We will just be supplementing with the G-tube and on days he doesn't eat we can give him more. It will help him to finally put on some weight. Landen is about 6-8 lbs off of what would be considered a healthy weight for his height and the poor kid doesn't even gain a whole pound a year. In fact this year he lost 1.5 lbs and gained two inches. I mentioned before that his appetite has picked up since starting the new med. That is true and I have stressed and cried over this for the last few days wondering if I made the right decision. But I know Landen and am not sure how long this eating will last. Not only that but he still doesn't hit a high enough calorie count without supplement which has been pediasure for the last 9 months. And even then he has managed to loose weight. Also because of his eating habits and aversions he doesn't get a well balanced diet. We miss out on a lot of good nutrition because he is so picky.

So that is it I feel like we are on the right road for Landen to get him back on track. Landen is going into surgery tomorrow Thursday the 22nd. Yes its that soon. He will have the surgery in the morning and be in the hospital for 2 days for recovery. Pray for my little Landen that things will go well and that he will recover quickly.

Landen resting with daddy at the hospital

Landen exhausted after a whole day
at the hospital 

Happy Birthday My Sweet Little Landen

Landen is FIVE! What a miracle he is five years old. We are so happy to have him day by day. This we feel like is a big milestone for our little guy. We wanted to host a big celebration with all our family and friends but my dads accident has kind of put everything on hold. But we will be celebrating soon. As soon as we feel Landen and Mommy are up to it we will be putting something together. It will probably be something low key just a bar-b-que and cake. But we can't let this occasion go by without celebrating this amazing boy. Every Birthday... Every Day we have with him is a gift for us. We live on borrowed time and Landen is doing so well. We hope to see him up and moving even more in the next few weeks. We want our family and friends to know how precious this boy is to us.

Little Landen hasn't grown much over the last year but so much has changed. He still loves to smile and snuggle. He is the sweetest little snuggle bug ever. His personality is so laid back and relaxed it puts me at ease. He is happy happy happy! Constant smiles, laughs and what we call "Landen hands" or "Muppet hands". This is when he throws his head back and waves his hands in the are in the most excited motion you can imagine. I love love love love love my little boy. Life with him is a treat. Our little guy goes through so much and his body is always fighting him but he fights back. Even when his body gives him low energy and he can't do much he will lay on the couch and giggle and smile.

He is daddy's little boy. He loves his daddy so much. Daddy is his favorite person. He loves mommy too but mostly when daddy isn't there.

I love you so much Landen I'm so proud of every accomplishment you make.

Happy Birthday My Sweet Little Landen

2013 GFPD Conference

We look forward to the GFPD conference all year long. This year was a little difficult with my dad in the hospital and our family needing us but we also know what going to this conference means for Landen. It worked out that we went right as dad was getting transferred to Denver. My mom was going to come with us so we had already paid for her registration but for obvious reasons she couldn't go.. So we brought along my niece Tori. What a blessing she was she was able to help with the kids both on the two day car ride up and at the conference. As always we learned a lot from the medical/scientific speakers, and even more from the other families. We also received help and support from the medical staff who took the time to sit down with me and Landen.

The best part of these conferences are the family connections we make. Getting to know parents who are in all stages of this disease. We have parents whos children have just been diagnosed, parents like me with young children still trying to find a balance, parents who are experienced in the dad to day medical and emotional ins and outs of this disease and parents of angels. Everyone of them brings so much to our table. I love every part of it.

We had lots of fun time too. We spent an afternoon at the zoo, lots of swimming, we had a parents night out, we had dinner and swimming at the Lincoln Country Club, had dinner and fun at the Lincoln Children's Museum (braydens favorite). But I have to say my favorite was just spending time with the other moms. The support and advice and fun we have their are a unique thing. 

The 2013 GFPD Video 

Many of our wonderful families and our sweet children.

Pictures

GFPD family tree

Tori and Brayden climbing trees at the rest stop

♥ My boys ♥

Landen rode a horse at the zoo

Tori showing Brayden all about the bugs

 Landen ♥ Daddy

 As always amazing volunteers in the children s room

 I can't tell you how special these children are!

♥ Tracy getting her Landen time ♥

 Landen

 Balloon release

 Everyone loves a ball pit

 Always miss our Ezra friend...

Her family is the first we ever met with this disease

they live in Arizona miss them so much!

The Children's Museum was so much fun!