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You are here: Home / Archives for Down Syndrome

Down Syndrome

The Happiest Day – Infantile Spams – EEG Test

by Alan Leave a Comment

Dad-blog-baby-smilingWe were very blessed this last week to have this chunky boy start smiling again. On Thursday Nikki texted me at work and told me Wil smiled at her. I was a bit of a doubting Thomas because we have had so many questionable smiles. At the start of this week, Wil had been showing some great progress as a result of the medication.  On Tuesday he started sucking his thumb which is something he did before his spasms but stopped soon after they started.  After dinner on Thursday Nikki was kissing Wil’s cheek and he gave her a slight giggle. It was interesting to notice all of my kids immediately turn our attention to Wil as our ears were filled with a sound that had been silent for 3 months now.  I jumped in and took Wil from Nikki, anxious to see if I still could get him to laugh more. Before Wil’s spasms I could easily get him to laugh if I vibrated my lower lip on his chin and made a humming sound. Wil gave me the biggest most beautiful laugh. It was a moment I will never forget.  It was as if someone had flipped a switch and life had come back into him. That night we had the hardest time getting him to bed because we all just wanted to keep playing with him.

This Tuesday, Nikki took Wil in for another EEG test to compare his brain patterns to the previous one.  The test showed that the spasms had stopped! The doctor said that his EEG was still irregular as far as development was concerned, but she was not sure if it was from him regressing for the last 3 months or from Down Syndrome.
I can’t begin to explain how excited we are to have this little dude back to his happy little self. Out of our 5 children, he has definitely been the most content and cheerful.  He has such an unexplainable way of brightening the room.

Filed Under: Down Syndrome, Parenting

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Alan Lawrence

thatdadblog

After lots of prayers and counseling with her doct After lots of prayers and counseling with her doctor, Nikki has started talking a medication called Hyramoz which after time (hopefully in a year or two) can put the Ankylosing Spondylitis in remission. 
she’s also taking something to help ease her pain. She called me from Costco crying, she was so excited that she could lift a bag of flour into her cart without pain.
Diet is another big change that she is doing to help
Well, thank you so much for your prayers and ask you to please continue to pray for her that this will soon go into remission.
Yes, we are that family. If you’re a part of the Yes, we are that family.
If you’re a part of the T21 tribe you get it - we take care of each other and if we can meet another family in the tribe nothing gets in our way.
#downsyndromelove #downsyndrome #downsyndromeawareness
#downsyndromerocks #21 #trisomy 21 #upsyndrome #morealikethandifferent #nothingdownaboutit #theluckyfew #mystory #dadlife
I was showering and thought I heard someone come i I was showering and thought I heard someone come in the bathroom.  I finished washing my face, turned around and there was Wil 
“Hey Dad!” 
He knows how to pick our bathroom lock and said he was bored and missed me. It’s hard to get mad at that. 

He is still learning the concept of privacy but at least he rolled up his pant legs! 😂

#dadlife #downsyndrome
Throw back to when Wil was young and we were comin Throw back to when Wil was young and we were coming home from a vacation and were letting everyone exit our plane before we organized our big family to exit. While we waited, Wil made everyone’s night a little brighter. #downsyndrome #reels #dadlife #downsyndromeawareness
Sharing this with permission from Nikki to possibl Sharing this with permission from Nikki to possibly connect her with others who have been through this and also to ask for your prayers as she navigate her daily pain and for guidance on solutions.  Thank you! 
these photos are from a recent trip to a Hot Springs in Idaho, which felt so good on her joints. 
#ankylosingspondylitis #ankylosingspondylitisawareness
“My butt is ouchy” 😂 Leidy and Rocko spent “My butt is ouchy” 😂 Leidy and Rocko spent the day on the mountain with me learning to snowboard.  They both did great! Leidy was very nervous and told me she was worried that she was going to throw up but by the end she was going on the lift by herself and told me she was happy. 
Rocko was a trooper and told me I could go do some runs by myself he wanted to concentrate 😂 
These two pushed themselves and over came some fears today and I am very proud. 
#prouddad #familyiseverything #dadlife
Sweet 16!! It’s hard to believe that its been th Sweet 16!! It’s hard to believe that its been three years since I first met Leidy in her orphanage while helping to film a project that was advocating for orphans in Colombia who were close to aging out.  Now she is home celebrating her first birthday with her new family! 
This happy, and stubborn girl has a big heart and even bigger dreams.  She was full of joy on her first birthday with her new family!
Meeting a fellow Dad that shares the same Down Syn Meeting a fellow Dad that shares the same Down Syndrome connection erases all awkwardness of bear hugging in the middle of a shopping center. 
YOU ARE OFFICIALLY BROTHERS FOR LIFE!! 
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#advocatelikeadad #dadlife #extrachromosome #downsyndrome #downsyndromeawareness #downsyndromerocks #t21 #trisomy21 #upsyndrome #morealikethandifferent #nothingdownaboutit #theluckyfew #mystory #changingthefaceofbeauty
You sourdough mamas know the feeling. if you want You sourdough mamas know the feeling.  if you want to be a domestic goddess and try sourdough bread but you’re intimidated. Send me a DM - Nikki is sharing some of her starts and she also has a 15 minute instructional video on how to make sourdough bread from start to finish 👍
#sourdough #sourdoughstarter #sourdoughmama #sourdoughbaking #domesticgoddess #funnyvideos 
#homeschool #pioneerwoman
Three Running tips I learned from my new trainer:  1. Randomly laugh for minutes at time for no apparent reason. 2. Always check to see if you are being tracked my a bear or racoon. 3. Hug your running buddy while you are running to motivate each other. Looking forward to learning more from my new running coach. He is the best in the biz. 
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#runhappy #noexcuses #downsyndrome #theluckyfew #fyp #prouddad #viralreels #dadlife
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