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

Landen's AFOs

So the othotist decided that Landen needed something more supportive then the SureSteps we were hoping to get him he is getting Cascad which of course are custom made and will cost us much more. Even worse is that our insurance will not cover most of them. We have to first meet our deductible for the year and the cost of the AFO (ankle-foot orthoses) is more then our yearly deductible so we have to pay the entire deductible plus our portion of what is left over. With what we pay for health insurance to have such a high deductible and still have large co-pays is STUPID!!! But the good news is from here on out no matter what we get done our insurance will pick up a good chunk of the bill. The better news is that since Landen's application for long term care was submitted weeks ago before he even saw the othotist if he is accepted we can apply and hope for reimbursement and if not then I guess will live. I don't wish to sound like I'm just complaining I'm grateful that we can actually afford to pay the out of pocket expense to have these made. We are trying to give Landen every opportunity to get strong and develop now before the disease takes his motor functions away from him. Its not just a race against some set clock cuz with this disease there is no way to predict how and when things will get worse. We have nothing to go on. We can't compare him to others with this disease every child is different. That is one of the most difficult things for us. They can't look at us and say he has blank amount of years not even a rough estimate. All they can tell me is that this disease will take my baby and there is nothing I can do about it. But for now we are handling it one day at a time and doing everything we can for him. Its worth shelling out one complete paycheck for AFOs and a little over a hundred dollars on top of that for his walker... why... its not because we as his parents want to see him succeed and walk before he looses the chance (although that is very very true)... its because for those of you who spend time with Landen know he wants to walk. He spends so much time practicing the two or three steps that he can make between two people. He loves it! The look on his face the enormous smile he gives when you hold his hands and help him to walk. So today I went down to the othotist office and put a huge payment on my sons happiness and on the 28th I will take him down to get his new AFOs.

What a week!!!

Last week was an incredibly long week for us. Monday was Landen's AFO (Ankle-Foot Orthosis) evaluation. It went well the orthotist wasn't sure what kind she was going to recommend until she had a chance to sit down with Landen's PT but she decided to cast him for them anyway. They wrapped up his legs in a quick drying cast and held the feet in place till it dried... surprisingly Landen LOVED IT! Even more surprising when she fired up the saw and started cutting them off he loved that even more! He laughed and giggled at the vibrations on his feet thinking it was so fun... I'm guessing considering how much he liked the whole experience that teaching him to wear them all the time will not be too hard.

Wednesday was an incredibly long day for us. We knew we would be out of town for most of the week so we crammed everything into one day! Not the wisest choice I have ever made. I stayed up all night cleaning and packing for our trip to Vegas and managed to get almost everything done except on little thing... SLEEP... Landen's had OT scheduled at 9:30 in the morning in Kingman so it was an early wake up call for us. The new OT worked with Landen under the supervision of the old one... I'm not sure how this is going to work out. She is very inexperienced and has a lot of training to do before she takes over. But its not just that Landen is generally a very happy and loving baby but there is some people that he just connects with right away that he doesn't need several visits to warm up too. They work well with him and are able to keep him very focused. Ms Stacy (the old OT) is one of them... this new lady is not... Landen doesn't like her much and would prefer to play somewhere else then with her and that makes it very hard. She spent most of the appointment trying to draw him into play. She is very unsure of what she is doing in the first place and add that to the fact Landen just didn't warm up to her and we didn't accomplish much. The last few minutes when Ms Stacy took over were the most productive of the whole session!

That same day immediately after we finally had Landen's speech evaluation. Unfortunately I misplaced Landen's hearing aids on Monday after his appointment with the orthotist... I searched everywhere for them!!! The evaluation was just a bunch of questions like every other evaluation is they are hard for me. The constant can he do this and can he do that most of which is no is just one more reminder of this awful disease and how much it is taking from my little baby.

Then it was home to yet another evaluation. This one for the state "Long term care" program. Landen is now covered through my husbands insurance but there are things that wont be covered and we still need help with them. We had applied once before and though Landen has many disabilities no single disability was enough to get him on and they refused to look at his condition as a whole because we didn't have a diagnosis to link it all together. Silly I know when you are looking at a child with significant hearing/vision loss, physical and mental retardation, low tone issues, not walking, not talking... a child you can look at and see that there is something wrong... and yet they can say sorry your child doesn't fit our definition as long term disabled simply because he is "undiagnosed". But now he is diagnosed as helpful as it is its not a win for us. These questions hit me even harder. They just redid the evaluation forms for children applying for long term care they are now more "age appropriate" questions suited more to a 2 1/2 year old rather then a baby. There were very few "yes" responses to the "can he...?" questions. It really breaks my heart. Sometimes its easy for me to... how do I put this... not forget... but push it out of my mind how delayed he really is. When he is around children his own age its all I can do to not break down right there because the difference is so plainly obvious. But when its just Landen in a room playing and laughing he is normal to me. I see where he has come from and how much he has grown and am proud of him. Because of his small size others don't always recognize right off that he is severely delayed they also think hes 18 months younger then he is. Its not until they compare him with their 3 year old or their 2 year old granddaughter that people realize that something is wrong. I get questions all the time "whats wrong with him" or sometimes something a little more tactful but you can be surprised at what complete strangers will say. Most days I just say he has a rare genetic disease. Which most people will let go others start to pry... these people I'm not sure how to deal with... most days I calmly answer their questions trying to not get to involved in the details. (like they really want to know anyway) There are a few that have caught me on a bad day and got a tear filled reply that hopefully will make them think twice about being so intrusive! Sorry I didn't mean to go off on such a tangent... sometimes it surprises me what comes out when I'm typing.

After all this was done on Wednesday I packed up the car gave one last effort into finding Landen's hearing aids and headed toward Las Vegas to meet my family there! We were all coming down for my oldest brother Mike's wedding. Even though he is also living in Utah like the rest of my family he decided to have a Vegas wedding for my convenience (I'm sure that was the reason even if he didn't say that) Although we left our houses at the same time I arrived at the condo HOURS before my parents. It may have something to do with the fact I only live 90 miles away and they live 400 but I prefer to say its my amazing driving skills. It was a cold and windy weekend (Landen's favorite weather) so we didn't do much swimming. I had a fun night out with my siblings that are older. And Landen and Brayden enjoyed all the attention that they got from everyone. It was a nice wedding and we are happy to include Kristy and her daughter Samiya in our family! It was so nice to be with my family and almost all of us were able to come. We got to swim a little and Scott and my Dad jumped off a building together. They are crazy if you ask me! But in all it was a very nice trip..... oh I finally did find Landen's hearing aids, we were at breakfast getting ready to say our goodbyes and go home when I was clearing out my camera bag making sure I didn't miss anything and pulled out two little blue hearing aids! Apparently I had them with me the whole time!!!! I have no idea how they got there either!