No we didn't drop off the face of the earth!

Sorry all I haven't blogged in a couple of weeks we've just been so busy with life. I had to go back and see what was happening last time I posted and what has happened since then.

Therapy of course lots of therapies. Landen is loving his speech therapy which is new (we've only had a few visits). The therapist is really nice and helpful she even likes it when Brayden tags along. He is usually a big distraction during therapies but we are working on Landen learning to say no to him nicely instead of pushing him away. But then again this is a struggle all siblings of this age face no matter the circumstances. Little Brother wants to be part of everything and have what his big brother has and big brother is annoyed!

We have been to several meetings with the school district even with the decision to put him in a home based program we still have to go through all of the testing and qualifying for regular special needs preschool. I think we actually had a meeting to decided if we were going to have another meeting... but I shouldn't complain because they are doing everything they can for Landen and being really helpful and doing what they can for him.

Mostly we have been busy having some fun. We spent a weekend camping. It was a lot of fun Brayden really liked it he seemed to embrace the outdoors loved getting all dirty! We took Grandma Sinex (Scott's Mom) along with us. Landen did good for the most part he loves to sit in his little camp chair and sing. The very next weekend Scott took Landen and Grandpa Sinex out to the father and sons campout with our church. They seemed to have fun although I think Landen was a lot more work then Scott thought he would be. Scott refused to take a camera with him so I have no pictures. They didn't take Brayden and I wasn't invited to the father sons so we got to stay home together we got a little swimming pool for our porch and had chicken and ice cream!

Last week we had a short visit from one of my best friends we've know each other for what seems like forever! I was so happy to have Heather here!!! Although her trip was cut short (sad but that is life) so we squeezed all of our activities into just a few days. We went to all the usual "attractions" that this area has to offer. First to Oatman to see the wild burrows or as Heather put it "demon donkeys". Then to Lake Havasu to see the London Bridge yes the actual London bridge from London is now resting in Arizona a short hour and half away from where we live. Walked along the canal that they built so the bridge had something to go over and spent some time on the beach. And then we went to the Grand Canyon we go a lot but it never gets old. Average temperature at the Grand Canyon in May? 60-70 degrees so beautiful and nice yet somehow Heather, the boys and I ended up in a blizzard. I have to admit being from Utah I've always loved the snow but hated driving in it but I find its like riding a bike or at least I didn't kill us. It was so nice having Heather here we have tons of fun together as close as sisters although I'm still a little tired from staying up all night!

Our other news! The PT from the school district who will be seeing Landen sent over a walker that belongs to thim for Landen to try out. Its a rear facing walker meaning he pulls it behind him as he walks. He loves it he tries to use it and spent half his PT time chasing Mr Tom in the walker but unfortunately its 2 sizes too big for him and hard to maneuver and makes him an easy target for Brayden who seeks up behind him and starts pushing the walker forcing Landen into almost a run... I will admit I did laugh it was funny! But now that we know that he will use it we can apply to Capstone (Landen's insurance through Long Term Care) for a walker in his size. Before we know it Little Landen will be up and mobile!!! I'm way excited for him!

Other then that Its just life for us it keeps us busy!

Lets get this straight my son is a BLESSING!!

I can't believe some people!! I came home from Walmart today in tears... There I was putting my groceries and kids in the car and my two precious little angles where waving their hands and laughing as the wind blew in their faces (both of them especially Landen love the wind). When the stranger getting into his car next to me asked if they are twins. No I said like always they are almost 2 years apart. "Really" he said (I get that a lot) I told him like I always do "my oldest is just small" his response was a first. "I hope he isn't mentally delayed" (it wasn't the words it was the discussed tone he used that surprised me) "Yes he is" I responded then he started into a big long speech about how children like "that" are nothing but a "burden" on parents and society and how children should be like fish so we could throw the bad ones back and try for something better. I was so angry I'm generally really not one to get confrontational. I can listen to someone say rude and insensitive things with a smile on my face... (till I get home and complain to my husband). But there was no way I was going to walk away from this one MY CHILD IS NO BURDEN!!! MY CHILD IS A BLESSING. I'm so grateful to have him. After telling this man this he didn't repent or apologize, instead he went on and on about how my child and me were going to hell the Bible says so. How we must be some sort of sinners who have never felt the love of Christ. I know this is a fight I could spend all day fighting with an ignorant man so I mustered up all the strength I could and got into my car without another word and drove away. But I can't tell you how bad it hurts to think that people think of my sweet boy that way. My baby is the closet thing to heaven I have. From the day he was born I look at him and feel nothing but the love of a Heavenly Father who sent him to me... He teaches me to the true meaning of Christs sacrifice, the true meaning of selfless love! I love my baby and he is no burden. I may stress and worry and work extra hard for him but I do it all willingly, I do it all because of my love for him! I just want you all to hear this and understand even though things are hard and difficult at times I would never "through him back" and hope for a better fish! I already have the perfect fish. I'm not saying there aren't days when I wish that he didn't have this disease and that everything was normal but that is only for his sake. My heart aches for all he is missing... and a little selfish I don't want to have to say goodbye to my son. But if he comes with this disease and all his disabilities I'LL TAKE THEM ALL just for the privilege of having this time with such a beautiful happy amazing son.

Its offical Brayden is short!

Brayden had his one year check up today. I was informed by the doctor that Brayden is very healthy for his age just short! 29 1/4 inches and 19lbs 4oz. So he is getting big but he is only in the 10 percentile so he is actually small... I guess when we compare him to his 22lb brother he just seems big to us. He is doing so well. He gets up in the middle of the room and stands. He can even take a few steps I'm guessing by the end of the month he will be running (I say running cuz this kid has so much energy he's going to skip walking and go straight to running). He is getting more and more determined everyday. He has his best friend a stuffed monkey that mommy doesn't let him take out of his bed usually but being the smart boy he is he tosses it out of his crib when I come get him and as soon as I put him down he climbs all the way up the stairs to go rescue his friend and bring him downstairs with him.

We also got the good news today that Landen has been accepted into Arizona Long Term Care (ALTCS)! Meaning we can get help financially through the state for Landen's medical needs. I got a personal phone call from the lady who was unfortunate enough to be the one to inform us in the past that Landen had been denied because of non diagnosis... she remembered doing his application a year ago and was so happy that they accepted him this time. Although we are insured we still have co-pays and deductibles and some things are just not covered like his hearing aids. This is getting to be a concern since in the last few months I've noticed Landen is getting less responsive to noise. He doesn't respond to his name or even clapping like he use too. I mentioned this to a friend from the School for the Deaf and Blind this week she specializes in hearing. She watched him and was concerned as I am that his hearing may be getting worse and we were afraid that we couldn't afford to get a new ABR (Auditory Brainstem Response) done which will help us determine if this is the case.

ALTCS will also allow us to keep Landen in outpatient therapy in Kingman after he turns three in August. Landen's DDD (department of developmental disabilities) worker was shocked when I told him that even when he starts receiving in home service through the school district I still want to take him to outpatient. Apparently most Bullhead moms hate going to all the way to Kingman every week and prefer to just have in home services. Not me I love taking Landen to the pediatric gym in Kingman! they can do so much more there then they can do in home. He can have OT sitting in a tire swing filled with balls!! Or climb ramps and stairs and all sorts of things that they just can't do in home. So to me the 45min drive is worth it... its only once a week. Its silly maybe its just cuz I grew up out in the middle of nowhere where we had to travel long distances just to get groceries but a 45 minute drive just doesn't seem like that much of a inconvenience to me.

Also on the good news last Friday was Landen's first speech therapy appointment! It went really well. We meet with the therapist and talked about Landen and what she plans on doing with him. Scott came with me to Kingman last week and it turns out that he and the speech therapist worked together when he was doing part time at Valley View Hospital... She use to work there but since they don't take pediatrics patients there and she has a pediatric specially she switched hospitals.

Other then that Landen has just been getting use to his new braces... well kind of... he loves the braces wears them all waking hours with no complaint its the shoes he has to wear over them that he hates. I blame myself... I never wear shoes and I never put shoes on my kids (well almost never) we live in Arizona the most they ever need is socks to keep their toes warm. Neither of them were walking so I just didn't bother with shoes... So now both my kids are anti-shoe! But I've been making him wear his shoes one hour more each day... today he wore them for 5 hours. Not too bad. So we are getting use to shoes!


But in all Landen is doing really well. He is just as snugly and happy as ever. The other day he gave me a moment I will treasure forever... I always climb into bed and lay next to him and read him stories before bed. I didn't know how much he really loved that part of the day until last week. I put him into bed and had to go look for his story book. He had a meltdown climbed off the bed tears and screams then as soon as he saw me coming back with his book he climbed back into bed and gave me the cutest little smile. I laid down next to him and he snuggled close and patted my arm while I read him his story. When we were done he went right to sleep with no complaints. I LOVE MY LITTLE LANDEN!

We are planing to take both Brayden and Landen on a camping trip tomorrow and that should be fun! I love letting the boys be boys and play and crawl in the dirt! They will get all sorts of dirty and have tons of fun and when its all done they are 100% machine washable... okay maybe not machine (I don't want them to shrink in the dryer ;) their already short enough) But they are washable and they love baths. I figure the more dirty they get the more baths they get and we are all happy!

All About Brayden

I know that this blog mostly refers to Landen or our family in general but today is Baby Brayden's birthday and he is a very important part of this family so here is my post dedicated solely to my Baby Brady Boo Bear!

I cannot believe that he is one year old today. Watching him grow over the last year has been the most amazing thing for me. I can't imagine how this family would function without him. Brayden is a very happy and energetic boy... sometimes he has more energy then I'd like! Like I said before he has the energy of three wild monkeys all wrapped up in the cutest little package. His personality just radiates from him from the day he was born we knew he was going to be a happy little handful. One of the first things I noticed was his huge dimples he gets them from my daddy just like I do! And those beautiful big brown eyes with the long long lashes he gets them from his daddy. Brayden is more then just a happy baby he is such a kind spirit. He loves to share and giggle and smile and play. I love watching him explore and learn. He has just started to realize that he can stand up and take a few steps and is such a showoff! He flirts to get what he wants a shy little smile and a cute little noise and your heart just gives in and I'm sure he knows it! He loves his mommy, adores his daddy and follows his big brother everywhere. Brayden is an explorer and a quick learner. Skills that will help him to grow and develop (but hopefully not too fast). I love watching him figure things out he always seems to impress me.

Brayden has a personality that complements our Little Landen's and I'm sure in time he will be a big help to his brother (if they can ever learn to get along) He has already helped me... He heals some of the pain that I go through worrying and fearing the future when it comes to Landen. Heavenly Father knew what he was doing urging us to have Brayden when we did. The fear of passing this disease onto any future children is very real for us (not that we've made any final decisions when it comes to family growth. When we do it will be our choice and we will do what we feel is best for us and what the Lord wants)

I can't believe its been a whole year since his birth. This year has flown by so quickly! Brayden continues to surprise me everyday. Its different to watch him grow and progress like a "normal" child. Sometimes I think I must have the smartest child in the whole wide world when someone reminds me that he is just doing what most kids his age can do. Although I'm pretty sure I have a future genius on my hands.

We made a big deal out of his birthday of course cuz I'm a celebrator!!! It was just a small party just the four of us and Grandma Sinex... I spent many hours working on his cute cake this week. I woke up this morning and made a special breakfast pancakes and strawberries both my boy's favorites. I picked up a bunch of balloons cuz I knew it would interest Brayden. He had so much fun trying to get at the balloons. He would get all tangled up in the strings so that when he crawled they would follow him and he thought that was fun. We just hung out most of the day playing and constantly singing happy birthday songs. Then we had a good dinner, opened presents and had cake! He got food from Grandma and new shoes and a front facing carseat from us. I gave him his cake just for him to tear into but he was really shy about it. first he took the characters off and ate them for a while but then I wanted to see him tear into it so I took them from him... he cried... so I picked up a big handful of cake and gave it to him! That was all he needed :) and the best part of getting messy is getting a bath afterward! It was a good day all around.

I love my Baby Boy... He is so important to me... I cannot even tell you how proud I am of him and how much his daily smiles mean to me! Brayden will always be a very important part of this family... I love him so much! HAPPY BIRTHDAY!

Brayden's First Year

Suprise AFOs Came Early!!!

So I was going to blog Sunday but never got to it I know story of my life! So before I get to today let me fill you all in on what Last week was like for us... I know its long but it was a long week for me...

Monday....

New Car Day! What a day it was for us... We found out the previous Friday that the sounds our car was making was bad (we already kinda figured it would be) But now that we had someone tell us that what was wrong with it we knew it was time to get a new one. Getting completely ripped of on our old one we were very nervous and decided that we would buy only from a reputable dealership. We were thinking on a Toyota Scotty really wanted a Prius and I wasn't sure it would be a good choice for a family our size. We went Saturday to Lake Havesu and checked it out poor Scotty finally had to agree with me so we looked at other cars at the same dealership. We didn't want to rush into things so we went home and took the weekend to do our research and talk about what we really wanted. By Monday we made a decision went back to test drive a few more cars and make a purchase. I forgot how much effort and paperwork goes into a new car! It took a lot longer then we intended mostly cuz Scott and I couldn't agree on a car he negotiated with the dealership to make his car look better and better till I finally gave in. I still don't know how Scott convinced them to buy our 2002 Nissan Altama with 107,000 miles that is burring oil, broken heater, recently in an accident, needs body work, engine damaged for $1800 but they did. We were 100% honest with them so they had to know they were going to loose money on that car. In the end we came home with a 2009 Toyota Camry we really like it! Its bigger then our Nissan we can fit a whole (not just a half) person between the carseats and my stroller has plenty of room in the trunk!

Monday was also Landen's functional vision assessment we almost didn't make it back in time for him to be tested. Our friend Emma from the Arizona Schools for the Deaf and Blind came down all the way from Flagstaff to see him. They did a functional vision a little over a year ago and he did really poorly. These assessments are kind of strange if you've never done it before. They ask a lot of questions and they test him by trying to get him to look at things, seeing what distracts his gaze, putting objects out to see how he interacts, ect... They finish it off with vision acuity cards which are gray except a part with black and white stripes. They flip the card over and see if and how long it takes the baby to focus his eyesight on the striped spot. The lines get smaller with every card. Eventually for someone with poor eyesight the lines will just blend to the gray giving them nothing to focus on. Landen did better then last time but not as good as we would hope. This isn't a very accurate test cuz many things can distract him from focusing but they guessed that things that we could see clearly at 200 feet must be 20 feet or closer for Landen.

Tuesday...

Dentist!! Landen had his very first dentist appointment. I took him to a place here in Bullhead I heard their add on the radio and called up the office manager to discus Landen before I even brought him in. I kept telling her yes he is almost three but he is at the same stage as my one year old... She reassured me that they would be able to take care of him and I agreed to take him, but I guess she didn't believe me cuz they still scheduled him to have a full exam with x-rays and everything. Well I got there and it suddenly donned on them that although he was almost three he was way to small and underdeveloped for a regular exam. So she informed the dentist that we would be just doing a lap exam and we waited. This place was defiantly built for kids only! The waiting room had a giant indoor jungle gym and video games and toys and all Landen wanted to do was sit on the table and throw magazines... It was a long wait for some reason and eventually he decided to explore and have a little fun! He would have stayed there all week if I let him but he had to be examined. They had more toys in the exam room Landen was just so happy! I explained how long its taken Landen to get his teeth... he didn't get his first one till he was 14 months old and by 18 months he only had two, then they started coming in groups... Well he looked and told me that he was right where he should be and had all but 6 teeth! They even did one xray that turned out really poorly and didn't charge me a thing.

Wednesday...

Not too much thank-goodness just a therapy appointment in the morning... took time to catch our breath and get some home time!

Thursday...

Was playgroup at the park. We had lunch and an Easter egg hunt. I put the boys in the grass next to a bunch of eggs Brayden found one and was content with it when he realized it was full of jelly beans (he still feels sticky) and Landen found two to bang together I don't think he every realized there was anything in them. I'm glad to say my kids were content with so little they are easily pleased! We had a nice lunch with friends. And really enjoyed our morning at the park.

While at the park I realized how long Landen's hair was. It was windy and I couldn't keep in under control so I came home and cut his beautiful hair. I didn't stay up all night crying like I did the first time I cut his hair it was a lot easier to let go this time. In the end I think he looks very handsome with his new cut!

Friday...

PT and OT in Kingman... Things there are going so good! Landen is getting use to the place and is having so much fun. They have a new PT student a big 6'3" tall guy and Landen LOVED him! He loves his regular OT but this guy must remind him of daddy cuz he did so good with Mr Tom. The truth is unless Landen is hurt, hungry or tired he's Daddy's best friend so it doesn't surprise me. Not to say he doesn't love me when Daddy isn't home he is my snuggle bug. Back on track... So for the next 6 weeks Landen and Mr Tom are going to be PT buddies.

Saturday...

We went to the park to take our Easter pictures for our digital card. I got up early and made the boys bunny ears and tails... They had so much fun at the park I gave them a bucket of empty Easter eggs and they went to town! They played for a long time even after I was done taking pictures. Then we went home to be lazy for the rest of the day.

Sunday....

Easter Sunday, Just a nice day to relax and think about what our Savior has done for each of us. This Easter had special meaning to us. I think we realize more then ever since Landen's diagnosis how important the atonement and resurrection of Jesus Christ is for us. We got to ponder it even more since we were asked to be the speakers in Sacrament meeting. Talking in church is hard enough on a regular Sunday but when you are asked to speak on Easter Sunday it feels like a lot of pressure. But it was good for me to have to take the time to read the Easter story and ponder on the sacrifices made. I'm eternally grateful for my eternal family made possible through the Savior.

TODAY!!!

I got a call this morning that Landen's AFO's were here!! AFO's are a brace that goes on his ankles to hold them up straight. We are hoping this will improve his balance and help him learn to walk. Landen's ankles are turned in and not upright a common thing for low toned babies. The picture doesn't show it as well as I hoped. I've been hoping for this for a long time! My Little Landen wants to walk so bad and anything that may help him we will do! He did so good it was 15 minute in while the Orthtist fitted them and out. He loves wearing them didn't complain or pull at them. In the shopping cart he was swinging his legs back and forth so that they would hit the car loudly... like he needs one more way to be loud ;) After 2 hours I had to take them off to see if they were rubbing or causing blisters and he cried until I put them back on. He even tried walking during his vision/hearing therapy today. I could tell it was harder but he was walking with his legs together instead of like he just got off a horse! And he was lifting his knees as before he was swinging his stiff leg (no bending) when he tried to walk. I think this will do the trick for him! I was upset that they came with race cars on them. Why does it upset me? Because I wasn't asked!! I know its a silly thing to be upset about but when there is so much of his life I have no control over the little that I do is important to me. This company has so few designs to choose from especially for little little kids like Landen. Its mostly superheros and NFL teams so she just ordered them with race cars without asking. The truth is that I would have preferred plane blue to race cars and now we are stuck with them. I had thought they were going to be just blue and had a plan to make them cute. For the price we paid for them I should have had a choice! I don't want to rant and rave but I'm truly upset... there is so little I get to choose for my baby I certainly didn't choose to give him this disease... I can't control his symptoms or the progression, I can't fight what is happening to my baby, I didn't choose for him to struggle and have to give up so much of the "normal" stuff!! I try to make everything about him cute and happy I dress up his hearing aids, I buy him cute clothes, I try to do things that he like just for him, its my way of taking control of what I can. I can give him a happy life and I know he doesn't care about the little things I do to make him look cute. But it makes me happy to do things for him... I love both of my boys so much. Anyway I guess I will get use to the race cars and still find a way to make them "just for him"... I've written so much already and appreciate those who made it to the end... Thank You

Happy Easter