10/10 @ 10:10AM EST it's time to #SMAshTheInternet with #SMAshSMA
#armsforasher
#CureSMA
#CureSMAtoday
#CureSMAnow
Spinal Muscular Atrophy (SMA), is a genetic recessive disease and is the #1 genetic killer of children under the age of two. It destroys the nerves controlling voluntary muscle movement, which affects crawling, walking, head control, swallowing and even breathing. There is currently no treatment or cure for SMA, but through your support there is hope.
Please continue to help raise awarene
When we first nurse Scott he said, "Asher I don't know you but I've heard lots about you. There is a certain someone who claimed you as her boyfriend and told me all about you." He was referring to Asher's special friend in Plant City. Too cute.
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All smiles this morning. I had to put his hair in a ponytail. It's getting so long!
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On our way home snack in the red wagon.
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Wheeling around with nurse Scott.
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Who do you love?
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Wear jeans today to support Rare Disease Day.
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We are at Nemours Childrens Hospital for a not-so-fun procedure with Asher. Asher's new Pulmonologist wants Asher to have a swallow function evaluation ("swallow study"). A swallow study identifies if a child is aspirating liquid or food, helps determine a child's swallow baseline and deviations from his or her baseline. Because SMA is a degenerative disease the function of the body gets worse over time and this includes the ability to swallow. It is good to monitor the swallow function of a child beca
Cool lighting at Nemours.
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Big lights, little guy
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Visiting with the best neurologist, Dr Finkel.
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We are ready for our big day. Day two.
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We are at Nemours Children's Hospital in Orlando for Asher's 7th injection. It was a year ago this month when Asher received his first injection of what's called the "open label" extension. This extension has given Asher continued access to a new therapy drug to treat Spinal Muscular Atrophy (SMA).
This visit is bittersweet today. It was a year ago while we were here that I received one of the worst phone calls. Our dear friend, Asia, called to tell us her sweet boy, Brig, had lost his battle with S
We had an unexpected rough night with Asher. He woke up in the middle of the night with a wheezy cough and super congested. His heart rate was high but O2 is good. Already doing breathing treatments and heading to the doctors first thing. We'd appreciate some prayers to keep our boy strong and recover quickly.
(This picture is of our smiley boy a few days ago.)
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Tomorrow begins SMA Awareness Month. We thank everyone who has joined our journey to #beSMAaware and help us raise awareness.
We will receive the Proclamation from the City of Lakeland to recognize SMA Awareness Month in Lakeland on Monday, August 3rd at 9am. If you can join us, come on down to City Hall.
Stay tuned for informational posts in August about SMA and what you can do to help!
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SMA Awareness Month - Day 3:
The Story of SMA
Recent statistics are 1 in 50 (curesma.org), but whether it's 1 in 40 or 1 in 50 the story is still the same.
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SMA Awareness Month - Day 4:
Baby Lou Gehrig Disease
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SMA Awareness Month - Day 5:
A Day in the Life
What starts out as a cold turns into a little bit of chaos. When sick, Asher requires breathing treatments up to four times a day. This includes three pieces of medical equipment and almost 45 minutes each time. Asher, like all the kiddos with SMA, is a trooper. He fusses sometimes but overall he is great during the treatments. This is him wearing his sisters' headband, holding his nebulizer, wearing his chest strap to help keep his lungs clear, all whil
SMA Awareness Month - Day 8:
Annual SMA Candle Lighting
#cureSMA
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He is back!!!
Eating, drinking, playing and feeling better. Thanks for the thoughts, messages and prayers.
We can't tell you how much it troubles our heart to see him sick. It affects his strength so much but we are so thankful he can bounce back quickly.
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SMA Awareness Month - Day 10:
Hypotonia
This word was the precursor to Asher's diagnosis. We never had heard the word Hypotonia before our pediatrician mentioned he was a little concerned about Asher's low muscle tone. He tried to reassure us that it could be nothing and to come back in a month.
Asher was four months old. It was in that month that things started happening. At that time Asher had been waking several times throughout the night but he didn't want to nurse and I couldn't figure out wh
SMA Awareness Month - Day 11:
Are you 1 in 50?
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SMA Awareness Month - Day 12:
SMA Types
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SMA Awareness Month - Day 17:
Did you know?
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