The Global Foundation for Peroxisomal Disorders

Just wanted to add that there is a Global Foundation for Peroxisomal Disorders and they have started their website up so please take a moment to visit

http://www.thegfpd.org/

March Update

Well that's it March is just about over! We did a lot this month with Landen starting PT and OT, getting new molds, meetings with the school district, some fun crafts and just our normal stuff. But mostly this month we just hung out together at home.

Lets start at the beginning. I already posted about our trip to Flagstaff. So next was PT and OT! They are going so well! Landen had one week where he was incredibly cranky and upset and wouldn't work with the PT. Turns out he was getting new teeth which always makes him into Mr. Grumpy Face! The PT has been working on teaching Landen to use a walker we have been working with a front facing walker that he pushes but she really thinks that a rear facing one that he pulls will be better for him. So we are going to try one out and make a decision this week and then order one. The really aren't too terribly expensive so Scott and I have agreed to just pay out of pocket and get him one as soon as we can. We are also meeting with a orthotist on Monday to get an evaluation done for Landen to get some braces for his ankles. His low tone has caused his ankles to twist in slightly instead of pulling up and straight like normal (the technical term is pronation but I don't use big "technical" words if I can avoid it). The PT would like to get him into SureSteps ( http://surestep.net/ ) but really its up to the orthotist and our insurance company. OT is going wonderfully the therapist just loves Landen! She only sees him every other week but she just adores him. Unfortunately we found out that she is a traveler and is only contracted with the hospital to fill into till they find someone new, which they did. He will still be seeing this wonderful lady until the new one is trained. I have meet the new OT and she is really nice but we will miss our friend. Its an hour drive home on Fridays so Landen usually takes his naps in the car.

Landen had a transition meeting with the school district this month as well. Transition into preschool at age three. I was told several times that if I chose not to send Landen to preschool it was an end to ALL of his services and there was nothing I could do about it. We I knew I wasn't going to send Landen to preschool for several reasons... I don't think he would tolerate it, he's not developmentally ready for it, he is doing well at home, he "stresses" where there are too many people or too much noise, I don't think my three year old should be in school... Not that I think any less of mothers that do send there kids to preschool at three. But lets face it I'm a stay at home mommy who works really hard to give Landen absolutely everything he needs. I think I'm doing a good job or at least the best I can... and I think that he will do much better at home with me now then at school. I was just worried about him loosing PT/OT and therapy... I felt like they were taking my baby and giving me no choice because he needs these interventions. I was so ready to go into that meeting and fight anyone who would try and tell me he couldn't have services just cuz I stayed home with him! But before I could even start the lady from the school district suggested a home based program. After 5 minutes of watching Landen and listening to what I said about him she felt like he would do best at home! The reason no one else thought he could do home based was because unless there is a medical reason why he shouldn't be around other kids then generally they don't do it. With Landen though because of his many disabilities and delays (and the fact that I work so hard with him) they felt that it would be best if he were to stay at home. I was so pleased so the rest of the meeting was just getting and idea of what services he needs and next month I will get to meet with the schools therapist and work out a plan.


Landen's new molds finally came in the mail Monday not quite the colors I had in my head but I really like how they turned out! They are green and blue mixed together! They are much easier to see then his old ones. When they said blue sparkles I was thinking something sparkly-er and easier to see then his old ones were. I think they are dang cute on him! And I can tell a big difference he actually keeps them in for periods of time!

Hanging out at home is nice. We have been to the park once or twice but mostly its just us. Landen is doing so good. He is as happy and cute as ever! His new favorite place to be is on the table, he climbs up and plays and dances and if I let him he would fall asleep there too! Brayden is growing as well he is so fast if I look away for a minute he is gone! The other day I went into the bathroom and when I came out he was gone took me awhile to find him cuz he had locked himself in the boys closet upstairs! Poor kid was crying in the dark but then he did it again the next day! I love spending the days with my babies! They are my joy, my life, my love and my world! I'm going to start updating more regularly cuz I want to be able to share more of Landen and Brayden too... not just medically and a quick overview of our month but more of them. Trying to preserve this time in our life where we are happy, mostly healthy and together!

Silly Boys!

Landen Loves Getting Wet

Little Landen loves it when I spray him in the face. I don't know why he is just silly like that! Poor Brayden doesn't like it as much...

Landen Loves....

So today I gave the boy's their baths and dressed them for bed read them their stories and burst into tears... These are my favorite moments when I do little extra silly thing just because Landen loves them. In my mind I started listing the things that "Landen loves" things that years after Landen is gone I will always want to remember...

LANDEN LOVES
Landen loves baths
Landen loves to have his toes kissed when I put lotion on his legs
Landen loves to get dressed
Landen loves to swing
Landen loves to dance
Landen loves to sing
Landen loves to cuddle with his daddy
Landen loves play peek-a-boo
Landen loves when mommy lays next to him in bed to read stories
Landen loves when the book mark in his story book brushes on his face
Landen loves the park
Landen loves the wind in his face
Landen loves to close his eyes and run his hands across the grass
Landen loves to crawl the hallways in the church building
Landen loves to sit on his slide and in his high chair... he doesn't do anything just sits their and laughs
Landen loves to rock in the big chair
Landen loves to rub my tummy
Landen loves to close his eyes and feel textures
Landen loves to be sprayed with a spray bottle
Landen loves to have water dumped on his head in the bathtub
Landen loves to swim
Landen loves to get chased
Landen loves to get tickled
Landen loves kisses
Landen loves to laugh
Landen loves balls
Landen loves to ride in the car
Landen loves it when Mommy leaves the windows down
Landen loves it when Mommy's hair tickles him
Landen loves to sneak up behind people and play with their hair
Landen loves to try and walk between two people it make him so happy!
Landen loves to clap
Landen loves books
LANDEN LOVES DADDY AND MOMMY!!

Landen loves so many things in this life. and when he is happy you can see it in his face his whole expression lights up! Oh how I love my baby it feels so unfair to me! I love to share moment of happiness with both my babies! Brayden is getting to the stage where he has his loves too and I try hard to make sure that he gets plenty of his favorites in every day.

traveling

So its been awhile since we have really done much traveling... things have calmed down since the first weeks after our diagnosis. But we got out of the house this last week a few times! We went to Flagstaff on Wednesday Little Landen's hearing aids were starting to give lots of feedback so we are getting new molds for him. Fir those of you who don't deal with hearing aids everyday like me the molds are the part that go into the ear itself and when they get too small there is feedback from the speakers and it causes an annoying sound. Also I explain for you this is how they fit new ones... first they stick a tiny piece of foam with a string attached into his ear. Then they mix the goo stuff (that is its technical name hehe..) and the squirt it into his ear. The foam prevents it from going too deep and also assists them in taking it out when the goo hardens. I wish I had pictures to show you... In the past Landen has been wiggly and screaming through the whole experience (wouldn't you?) but this time he actually seemed to enjoy it! He laughed and flirted with the audiologist and had a wonderful time. We ordered BRIGHT colors for his new molds electric blue mixed with lime green! It will be so fun... I know that some of you wonder why I wouldn't get clear or flesh colored ones that blend in? I've even been asked that question by Landen's doctors! Even Landen's very first pair were bright blue! I accepted from the moment I first saw them on him that these hearing aids were just a part of him. I never intentionally took them out for pictures or anything like that (although there is pictures with him not wearing them cuz I can be forgetful or they were getting repaired) In fact I think they are darn cute! To the left there is the very first picture I took of him with his aids!

After our appointment we visited our friends who have a baby like Landen! We are so lucky to be able to see them when we go to Flagstaff! It was so fun to see them! Scott was upset that he couldn't make it. We talked and shared how things are going it seems that both Ezra and Landen have done quite a bit of growing in the last few months. Its so nice to be able to meet with them they understand our life better then most. We had dinner together and I ended up heading home a lot later then I originally planed.

Friday was our other trip this week Landen had his very first Physical and Occupational Therapies! We have to travel to Kingman for these every its about an hours drive for us. We will go every Friday for PT and every other Friday he will also have OT right after. Can I say again how much I love the ladies that help us! Landen had so much fun he was learning to use a walker this week we tried a front facing one next week we will try rear facing one. He practiced stepping and standing with the PT and we worked on strength, balance and textures with the OT. They are so amazing with Landen but they also know what they are doing! We are excited to continue to work with them.

Coming up this week is two more trips Tuesday he is finally having his speech evaluation so he can start therapy and Friday will be his regular PT! Just thought I'd leave you with one more cute picture of my Little Landen in his dinosaur PJ's! PS don't forget to check out our St Patrick's day card below!

Happy St. Patrick's Day!

Just Click on Picture to Make Big!

Goodbye February! Hello March!

February is over it is a short month after all! Sometimes I feel like I could use those two extra days. We we are all finally feeling better for the most part . Which is nice although I sometimes miss the quite when they boys were trying to sleep it off. My little boys are two balls of energy! Baby Brayden especially!!! That boy has the energy of 3 monkeys all packed into the cutest little package! Brayden has done some major growing this month. He now has two teeth, eats almost anything he finds (even if its not food), climbs stairs, crawls faster then Landen, climbs on things and DRIVES HIS MOMMY CRAZY!!! But he is so much fun!

Little Landen has also made some new developments as well as I said in the last update he is feeding himself very well and with more work he is starting to tolerate more textures in his food. Still not a fan of plain bread but he will eat toast and jam! He is learning too! Starting to play more games with mommy! His new favorite? When he hears Mommy ROAR he gets all excited starts to laugh and look around and when he finally locates mommy he crawls his fastest the other direction and the chase is on! I chase Landen catch him and tickle him and Brayden chases me and piles on top! The two of them can go forever Mommy on the other hand can't! Landen loves to do this he will escape and look back laugh and run away all over again! He is playing with new toys and being more expressive and vocal! Its been wonderful!

February was a fun month we had PT and OT evaluations and hope to be starting therapy soon! We are just waiting for approval our insurance will only cover so many therapy sessions a year and since between physical, occupational and speech he will be getting therapy 2-3 times a week we will run through thous really fast so the state department of developmental disabilities (DDD) will be helping us with the rest. Its been a long fight to get him into these therapies and we are so excited to finally be getting some help!

February also brought Valentines day which was fun! The boys had fun making our little valentine if you haven't seen it you should I posted it previously! Their favorite part by far was when mommy let them at the chocolate!!! Their least favorite part was when mommy decided they had enough and took it away. I made cookies for valentines day and let the boys go crazy, eat and get as stick and messy as they wanted! It was a lot of sugar but its only once a year! Plus the fun din''t end their we got to take baths afterward. Bath time is the boys favorite!

February brought us lots of different weather and we took advantage of it! We took trips to the park when it was sunny! We all love the park! There really isn't much time here when its nice enough to take the boys out to the park its too hot during the summer. We love the park I love being outside and watching the boys explore. The boys love the swings and the grass. Landen could spend all day just exploring he loves to crawl all over and Brayden follows him wherever he goes. Then there was the rain something else we don't get much of in Arizona. Landen loves the rain! I take him outside where he can enjoy letting the rain hit his little fingers. I leave the door open with the gate up and Landen and Brayden will stand at it singing, dancing and laughing! Its really fun to watch makes mommy happy! (there is a video posted below)

Scott has been busy this month with work its hard for him working graves. He doesn't get as much time with the family as he would like but he does what he needs to do.

I've had an up and down month. Its been almost 6 months since we learned about this disease and it still something I'm learning to deal with and understand. I love my boys so much and feel so helpless at times. This disease is one unlike so many others where there is no way to fight sometimes it feels like there is no hope. I have to sit back and watch it happen and know what is coming and do nothing about it. And since I cannot fight the disease I work and fight for what I can! What I can do is give Landen a happy life, give him every advantage to make the most of his abilities and love him forever. I know I'm crazy when it comes to holidays and celebrating I do everything I can to make memories that will last even after my son is gone. In a way that is where I find my hope! I have been blessed to with the creation of a Facebook group for parents who have children with PBD's it has been and invaluable tool for me to be able to talk to other moms to see pictures and get to know other children like Little Landen! I'm making friends with other mothers who are going through this too!

I know this is long but I have one other thing... I want to send my love to my older sister who's son is in the hospital... for thous of you who know my sister and her kids they found a tumor in Jacob's brain Friday night I know how hard this is for our family. He had a biopsy and a shunt placed on Sunday night and hopefully they will know soon more about what we are dealing with. Our family is a close knit group of people... I feel so helpless far away but I'm constantly thinking of you!

Landen's Rain Dance

Landen dancing and singing in the rain.
Brayden just being cute!

Landen and Brayden Feb 2010

Landen 2 1/2 years
and
Brayden 9 months
February 2010