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.