Brayden’s 1st Annual Bowling FUNdraiser for FSMA

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What a great Event!!! We were raised over $4,500!!!! The benefit was for Families of SMA, a non-profit organization that provides family support and reasearch to find a cure for SMA!!! On March 17th, 2012, we hosted Brayden’s 1st Annual Bowling … Continue reading

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Happy 2nd Birthday Brayden!

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Brayden was born a healthy baby boy on March 12, 2010. We had no idea that he had SMA. We were so happy to have him, he was the sweetest. He loved to listen to music and cuddle! Two years … Continue reading

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Update on Brayden

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Brayden started going to school last Tue. He is in a class with 4 other 2-year-old kiddo’s with special needs.  His PT and Infant Toddler Teacher are the ones hosting the class….they are so amazing with him!!!!  On top of that his … Continue reading

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Good Eats

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For the kids Brayden & Logan Making some Healthy Choices  

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Merry Christmas!!!

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Wishing everyone a very Merry Christmas!!! We have been hit with many new obstacles this year and are tackling them one by one with the love and support from all who are around us. Brayden has such a loving spirit it rubs … Continue reading

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More Equipment Arrived!!!

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We finally got to bring home Brayden’s stroller/wheelchair. I cannot belive it took five months but yes it is finally here and we are so happy to have it. This is an EasyS stroller with all the fixings. It came with a … Continue reading

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Brayden at aqua therapy

click the link…. http://www.youtube.com/watch?v=QGOCYDMV-Zk

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Brayden has pneumonia

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This is Brayden’s first time with pneumonia. He has been on anti-biotics for five days now. He is still raspy, but feeling ok. We continue with his nebulizer treatments, CPT & cough assist. We are all praying for him to … Continue reading

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Brayden’s AFO’s

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Brayden finally got his AFO’s (Ankle Foot Orthotics). They help support his ankles while standing and positioning. He wares them about 8 hours a day and can also ware them at night.

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Brayden’s Stander

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So this is Brayden in his stander. It is recommended that he stand about 2 hours a day. Standing is very important to improve bone density, and help resist bone fractures. It does have a tray that attaches so he can play with things while … Continue reading

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Pulmonology Appointment

Friday Sep. 2 Brayden had his first appointment with Dr. Schuen. We went prepared knowing what to ask for….I didn’t think that the office would act so quickly though. That day they ordered a Sleep Study, Echo, Swallow Study, Chest … Continue reading

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“Welcome to Holland” By Emily Perl Kingsley

“I am often asked to describe the experience of raising a child with a disability—to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this: When you’re … Continue reading

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Brayden’s Story

Three months old

Brayden’s Voyage is dedicated to our son who was diagnosed with Spinal Muscular Atrophy Type II.

Brayden Michael Janetzke was born March 12, 2010. He was a whopping 8lbs. 12oz. and 21″ long! He has always had a happy spirit, ever sence he was born 🙂

Braydens first few months were great, always alert and interested in what was going on. I remember him kicking his legs in the crib to let me know when he was up. He even started rolling over at 5 months. So things were going great. His older brother Logan, who was almost 2 years old when Brayden was born, was so excited to have a little brother!!! It was very precious to see them together!

About 7 months I noticed that Brayden wasn’t rolling over anymore and thought that maybe it was just a fluke. I didn’t even realize that he had stopped kicking his feet when he woke up. I did notice that he wasn’t sitting up on his own like his brother had done at 6 months. Logan was walking and running at 11 months. Which, I know was early so I thought Brayden will learn at his own pace.

At Brayden’s 12 month check up our Primary Care Doctor noticed something wasn’t right so he refered us to a specialist. On April 7, 2010 we were told Brayden had Spinal Muscular Atrophy. We never heard of SMA and would never have thought Brayden would have a Neurological Disease. Our first thoughts were will he ever walk and how long will he live? Both were answered with words I didn’t want to here! We had a blood test to confirm which seemed like forever to get the results. In the mean time we did some research about SMA. In one of the first documents I read it stated that 50% of baby’s diagnosed will not live to see their 2nd Birthday. We went though a lot of emotions and had many more questions. We were then refered to a Neurologist, who reassured us that Brayden can live a long life and may be able to walk with equipment aids. We take our days one at a time….and thank GOD for the life we are living and know that we are Blessed to have all the support from our friends and family!!!

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