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!

Dad

This has been a hard few months for me and my family. My dad was in a accident July 29th at work. I have been very busy between him and my own family. We live in my parents basement so not having PaPa around has been a big adjustment for all of us especially Brayden. He spent almost a month in the ICU at McKayDee hospital in Ogden. And is currently in Craig Hospital in Denver CO. This hospital has been amazing for my dad though we miss him. I'm adding a link to his blog that my older sister runs for information.

http://timsjourneytorecovery.blogspot.com/

We got to spend a week up with him in Denver after our GFPD conference in Nebraska.

Bring on the Sunshine- Landen's new chair

I don't know why this post ended up blank for so long but here it goes post it again.

SUMMER IS HERE!!
And just in time Landen has received his new chair. Landen no longer fits in his stroller he is just too big and his feet drag on the ground. We ordered a push chair through our insurance an it looks great. For those who don't know the difference between a push chair and a wheel chair is that Landen won't be propelling himself we will be making him "go".

The chair came just in time for us to start our summer off with a bang. We went to Yellowstone with my sisters family. On the way home we stopped in Idaho Falls for Scott's Brothers wedding.

 

Landen's new chair goes everywhere!

 

Family

 

♥ EVA ♥

♥ Daddy and Landen♥

 

 Brayden

Scott's Family

Grandma and Grandpa

Mothers Day in The Hospital

Yep that right I spent mothers day in the hospital. Most everyone knows Landen was sick and had to spend time in the hospital last weekend but in case you were wondering here is what happened. Sunday (May 5th) Landen started getting sick. Monday he was upset and had a fever... fever continued Tuesday through Thursday up and down often around 103. Took him to the doctor on Tuesday and they started antibiotics. By Thursday his fever was more up then down and he stopped eating and drinking. I was gone with Brayden and my parents in Logan and by the time I got back he was so sick. I couldn't even give him much of a cool bath because he was so week and shaky. I rushed him to the ER in Tremonton and we spent most of the night there receiving fluids for his dehydration.

Friday I took him in as soon as I could to see his Pediatrician in Logan. He made the decision to admit Landen due to his high fever and dehydration. We spent all weekend there getting IV fluids and Meds. They were able to keep his fever under control and help him with the pain he was experencing in his tummy till he was well enough to keep eat and drink again. It wasn't until Sunday morning that his fever finally broke. We spent the rest of Sunday resting and eating as much oatmeal and yogurt that I could get him to eat. Even now that he is feeling much better he only wants yogurt and oatmeal. Monday the last of the many test results came back telling us that he had adenovirus.

Monday we went home but he was already starting to feel better. By Wednesday he was almost better. Now he is feeling great but still week. I expect it will take him another two weeks or so to regain the strength he lost... and hopefully the weight he lost as well.

I can't say it was the best mothers day that I ever had in fact it sucked being in the hospital and away from Brayden. But I'm very grateful for the way it all turned out it could have been a lot worse. I have to say that the nursing staff and our doctors did a wonderful job. Landen was sure loved by everyone there. Most of them remembered him from his stay after his CI surgery. I hope we don't have to meet again but chances are we will so I'm very glad that they are there for him.

Brayden is Three!

I can't believe it my little Brayden is three! Where has the time gone? Brayden is such an amazing little guy. So much energy and fun mixed with sweetness and caring. He is doing so much now a typical three year old boy. He loves his TV shows almost as much as he loves being outside. I think his favorite activity is jumping on the trampoline. Trains, cars and dinosaurs that is what my little guy likes.

Questions questions questions.... The little boy is so full of questions. Whats that? What color? Where's Landen? I've even caught him asking and answering himself questions when no one is around. In the bath tub the other day he was saying "what color is that duck" and answering "blue" "green" "YELLOW" (he loves to say the word yellow). He is so stinking smart there is not a child safety lock or gate that he hasn't figured out yet. He loves to talk and read books. He can't even watch a show without running into the other room to tell me exactly what Curious George is doing at that moment.

He is a caring and loving brother. He is always concerned with where Landen is and what he is doing. He loves to help out with Landen bringing him food and toys and letting us know when Landen's ear (his Cochlear Implant) is not on. He also loves to take care of Mr Monkeyface sometimes he dresses him and diapers him. He is always setting him up in his high chair with some food.

Yes Brayden and Mr Monkeyface are still fast friends they can't be separated with a crowbar. He goes everywhere with Brayden. Monkeyface is getting very worn out and almost ready for another stuffing.

I love my Brayden boy so much and am so proud of him and everything he does. What and amazing child I have been blessed with! Happy Birthday Brayden!

Hearing and loving it!

Landen has been hearing for a month now and its been great! We have been enjoying every minute of it. We also hear such positive responses from Landen's school. They have really noticed a change in him. He is much more energetic and attentive to activities. The changes are not extreme mostly subtle but very amazing non the less. I notice the most amazing little things. Feeding him is no longer a struggle he is more attentive and willing to let me help him. He lights up in the bath tub. We noticed that he has a fondness for soft music and wind chimes. Best of all he loves to hear mommies voice. There are so many little things that just make him light up. He loves the sound of his own laugh. Its the funniest thing to see him when he starts to giggle witch makes him laugh, which gets so out of control he gets the hiccups. Which of course makes him start to laugh even harder.

Cochlear Implant Surgery

So its been almost a week now since the surgery and the swelling is going down and it is healing nicely. Thought I would finally post about the surgery since some of my family isn't on facebook.

We went to the hospital last Wednesday morning we were scheduled to start at 9:00am. They put us all alone in the big pediatric post op which we got all to ourselves since he was the only pediatric surgery that day. Landen was such a happy go lucky boy having so much fun even though he hadn't had anything to eat all morning. Somewhere around 9:15 they came and told us that the surgery before us was running over. The wait just kept getting longer and longer. Landen held it together pretty good until the last 15 minutes before he went back. It wasn't until 10:00 that they finally got him into the OR.

We were expecting a three hour surgery maybe three and a half that is what the surgeon scheduled out. My brother John and his wife came to sit at the hospital with us since they are visiting from Germany. It was nice not to have to sit alone and wait while we watch silly TV shows and try not to think about our baby boy.  My brother Isaac showed up not to much later with his family. Then my sister and my parents. Thank goodness they gave us the big room cuz we kept growing. Time for me just dragged and half way through they let us know that the surgery was going well but longer then expected. So it was more and more waiting.

The surgery ended up going almost five hours. I was so nervous I wanted to see him so bad. It seemed like forever before the doctor came to see us. He explained that it was the toughest cochlear implant surgery that he ever did. Landen's cochlea was turned in an usual way making it harder to get to. Plus his facial nerves were not in the usual place so he had to drill closer to them then he expected so he had to go slow so he wouldn't damage the nerve leaving his face paralyzed or partially paralyzed. But in the end it was a very successful surgery. They got it all in place and had 100% insertion into the cochlea.

We went back to our waiting for Landen and it seemed like they would never bring him back to us. The doctor came to talk to us again and said that Landen they wanted to admit Landen into the hospital possible over night just to watch him. Although most kids go home after a few hours they didn't want to risk it by treating him like any normal child they were going to keep him. They wanted him to stay till six and then make a decision on if he should stay overnight. So we didn't get to see Landen right away.

We moved up to pediatrics to wait again... eventually the rolled him in an hour and half after his surgery had ended. We found out that he had throwing up in recovery. Poor guy looked so miserable. All my family got to see him and we settled in. At six we made the choice to keep him there overnight. I stayed with him all night it was a long night and he was in a little of pain but by morning he was looking better just not eating. We waited until noon and went home.

Since then he had done great it wasn't until Friday afternoon that Landen finally got out of bed and ate some food. By that night he was up and back to his normal crawling and playing. The stitches come out on Friday and we activate his equipment on the 27th. That is when he will finally be hearing us all again!

Ready for Surgery

Here I am the morning before surgery finding it hard to sleep I decided to blog... I still have a few more hours until I have to wake Scott and the boys up but I'm getting my pre-surgery jitters out. I have been through a ton of testing and imaging with Landen all needing various sedation or anesthesia so I know he does well. But you can't help as a mother to still get a little nervous every time they take your little one back into the OR without you. I'm really excited for this I have worked endlessly for Landen to receive his cochlear implant and its finally time!

We have been so busy lately between CI stuff and getting him re-established with many of the doctors down here. Last week we meet with a new geneticist at Primary Children's who was so nice and seemed to know everyone. Including our geneticist in Arizona, Dr Zellweger whom the PBD spectrum is named after, and Dr Braverman who we see with the GFPD he knew when she was just training in genetics. We really enjoyed meeting him and he has already gone above and beyond in helping find resources answers to some of our questions.

Yesterday Landen got a new set of braces his old AFOs still fit but we were not getting the results we wanted with them. I had previously discussed with the OT in Flagstaff that there might be a need to put him in a taller brace since he was hyper extending his knees, walking on his toes and leaning back too far when he tried to walk. The OT we see now in Logan suggested the same thing. He is really good at explaining why Landen's needs things and exactly how it will help him. We agreed and fitted him for a new braces and we picked them up yesterday. The manufacture didn't quite fit them right and they are too tight and already are causing some red spots and irritation on his feet. So we are actually getting new ones made and only using these ones to get him use to the idea of the taller brace. I love how as soon as we put them on we could tell a difference. He stands straighter and the few timid steps he took were heal to toe instead of toe to hill which is what we were going for. They are also at a different angle because he spends so much time with his toes pointed he was loosing some of the range of motion in his ankles and this will force his feet into a position that will stretch the muscles and prevent the tightening we already see a little of.

Also yesterday he was fitted for his first adaptive stroller. This is a stroller we are getting through our insurance company that will be able to fit him and his needs for many years to come. We no longer need the double stroller and his poor little feet practically drag on the ground in the single stroller we have. Plus his school has requested it since they have to carry him from place to place if he refuses to use his walker. Its tiring I know cuz I do it! He is so small yet he isn't small anymore... if that makes sense.

I look at Landen two different ways sometimes I guess depending on my mood. Sometimes I look at him and see how big he is and how much he has grown. Looking back at pictures a year or more ago and compare him to himself. This is when my heart swells and I'm so proud of him! What accomplishments he has made and how wonderful it is to see him grow! Then there are the times I can't help but compare him to others. Mostly Brayden who has now slightly outgrown him and other four year olds. The he is so small... I really try to avoid this but sometimes its hard. Especially being around friends who have four year olds. People I was pregnant with and I was so excited to see our kids grow up together. I see them running and dancing and playing and going off to school. I see them interacting with their family and making friends knowing I will never have that kind of interaction with Landen. Usually it doesn't really bother me Landen is Landen and I love him. But every once and a while I can't help but feel a little jealous or heartbroken over missing out. Today is not a sad day though today is a happy day. Today is a day where I'm so proud of my little Landen! I'm proud of my family and my husband. It has been so much work getting here. I have worked through frustration and stupidity and my own tears to get to this point. My little Landen is getting his cochlear implant and in a few weeks (the 27th and 28th) they will be activated and he will be able to hear! Can you believe it! What a miracle this is for our Landen. I know it sounds dramatic but this will change everything! It gives him one more way to experience his world and he has so few ways now.  I love my Landen! I will post as soon as I can about the surgery but now I think I will try and grab one more hour of sleep or maybe a relaxing bath.

Settling In...

So yes I'm not the best blogger but in my defense moving to another state in a moments notice leaves you really busy trying to get the entire family caught up with the change. Not to mention the change in doctors and insurances and treatments ect. Finally starting to feel settled into our new life. No Scott hasn't found work yet but he is going out for interviews and working everyday to find something. We have also applied for him to go back to School next fall. But even though the work hasn't come to us yet we have found things better in every way for our Landen...

Most of you know but Landen started School January 4th. He attends the Early Learning Center in Corrine. This is a developmental pre-school where most of the children have developmental or medical needs. He attends only two days a week for now he goes Mondays and Fridays. Their days are only three hours long but they pack a lot in and it means Landen is home before nap time. We love it there Landen is getting to know and love his teachers. He recognizes them outside of the classroom and gets excited to see them. He receives all his therapies and services at the school. We get lots of positive feedback from his teachers and therapists. We have meet in a group with the teachers and therapist and developed a new IEP for him that I'm really excited about!

We have set him up with some new doctors who we really like (and when I say we I include Scott who is able to attend doctors appointments for the first time since he doesn't have to be at work) I'm loving the fact that they are so much closer!! We also have set up extra out patient therapy in Logan which we go once or twice a month. This physical therapist helps us with Landen's medical equipment. He is helping us get Landen an adaptive stroller because he is getting to heavy to carry all the time. Landen is getting new AFOs and some therapy equipment for the home. The PT also gives us instruction and ideas on how to help him in our home.

The most exciting news is that Landen is getting his CI (Cochlear Implant)! It was such an amazing thing my head is still spinning on how fast it happened. As you all know we have been trying to get him one since April of last year but ran into roadblock after roadblock in Arizona. Just when we thought we were going to get it CRS (children's rehab services) pulled the breaks and made us start over again. That news came weeks before we decided to move. So after getting Landen insured here we immediately started the process of getting him one here. We got and appointment with the Audiologist who would do a CI review. I went into see him February 5th. I got there and told him Landen's story and showed him all the testing we already had done that showed he was a good candidate for CI. He listed to everything and he looked at me and said all I left for him to do was sign the paper work. I asked him what the approval process was he said "are you ready for this.... I sign the paperwork and you call the surgeon to schedule a date" I couldn't believe it. Technically there was two options for us we could go to Primary Children's in Salt Lake and get it done but we would have to meet with the review board (which he was a part of so he knew we could get approved right away) and get the implant done there. But the review board only meets once a month to review applications and interview families who's applications were approved last month. And they already met for February. So we would get our application approved in March then we would do their required appointments and interview in April then we would schedule there but since they do more CI's they schedule out and it takes a little bit of time to get in so he said we would be looking at early June for surgery. But if we chose to have it done at Logan Regional we could do it immediately as soon as the doctor could schedule us in since they don't do as many CI implants their they are wide open. Plus if we chose Logan we could have all of our follow up appointments in Logan instead of Salt Lake. Logan Regional is twenty-five minutes away Primary Children's is an hour and a half away. So we chose to do it in Logan! The next week we met with the doctor who would do the surgery and he approved everything and ordered the implant and scheduled us for March 13th! We would do it sooner but he is going on vacation so we had to wait a few weeks. We are so excited!!

As for the rest of us... Scott is getting board of being at home all day and wishes he had work but does enjoy being free to spend time with his family. He is loving the snow and wishes for more excuses to be out in it... I'm enjoying spending more time with my family who all live around here. I love being back in the community that had such a great influence on my life growing up. Seeing people at church who helped me grow strong in my faith and supported me through the tough "growing" years. Spending time with friends I love and missed so very much... Brayden is attaching himself more and more everyday to "PaPa" (my dad) I'm sure when we finally move out PaPa will have to come with us. He is talking finally saying real words and more of them each day. He's becoming a little too attached to his TV shows. But also knows how to have fun playing with mommy and daddy. He is also growing into a moody toddler. Its the biggest struggle in our home right now but we are teaching him that no means no and we are not going to give in at bedtime!... My parents are adjusting to having us here as well. Although my mom may think I'm a little too pushy and obstinate trying to change her eating habits to better fit her diabetes and demanding that the floor be clear and mopped every day so Landen can crawl on it. But even with all this she realizes its all for love (I hope) and she puts up with me!

So truth is we are settling in and we know that we have made the best decision for our family when it came to packing us all up and moving here. The blessings of listening to the Lord's promptings are continuing for flow in for our family. Everyday we are grateful for everything that Landen has here and no matter how long we have to "budget" and "tighten out belts" while waiting for the job to come we do not doubt that we are at the best place for our family!

Happy Valentines Day