Baugherr
1.6K posts

Baugherr
@Baugherr_
My biggest flex is Josh Cribbs has liked 4 of my tweets
เข้าร่วม Ağustos 2020
409 กำลังติดตาม73 ผู้ติดตาม

Our sweet boy is back in the room with us and starting to wake up. This is a longer post but we want to keep everyone updated.
Today’s big tests were his MRI and ABR and we just got his results:
His brain MRI. This is the test we were most anxious for as brain volume loss is expected in sanfilippo as heparan sulfate damages brain cells and causes cell death.
Results: Stable and unchanged. No volume loss.
The ABR test is a hearing test that can be given while he is sedated. This is important because Clark is unable to partake in a traditional hearing test where he would be expected to respond to sounds through headphones.
At Clark’s baseline test one year ago, he was diagnosed with hearing loss. The audiologist took molds of his ears and told us he would need hearing aids.
At Clark’s 6th month tests, the ABR results showed that his hearing had improved. He was still unable to hear certain pitches, but his audiologist said hearing aids were no longer necessary.
His audiologist just came in and gave us today’s results: NORMAL. No detectable hearing loss. His brain responded to all sounds and pitches at all volumes.
To say this made us emotional is an understatement. Even the audiologist felt it. She said this is the first time she has seen someone with the level of hearing loss that Clark had completely heal.
We don’t take this opportunity for granted. Getting results like this gives us so much more hope and motivation to keep fighting to get these treatments available to all of our kids.
These treatments work. It’s frankly not remotely debatable at this point. Children are being allowed to decline and suffer because of outdated policies and regulatory red today.
Today we rejoice. Tomorrow we keep fighting. Thank you all for your support and walking with us on this journey 💜
“Rejoice in the Lord always. I will say it again: Rejoice!” - Philippians 4:4


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@ahmad_dahman Imagine watching the Browns when they went 0-16 and instead of the #1 pick they get rewarded with the 7th 😭 😭
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It genuinely has potential to ruin the league. The NFL is king because the Browns were in absolute hell and fans have roster hope again after 2 drafts. NBA is gonna create 5-8 Sacramento kings. Doesn’t matter how good your front office is
Matt@sixringsofsteeI
Omfg You can have the worst record and fall to pick 12 or the 4th worst record and fall to 16 What is the NBA doing man this is a disaster
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@DavidHanna1988 @RealDCunningham Nothing like every team having to wait to the final minute to make their selection turning 1 round into a 3 hour event 😅
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@Baugherr_ @RealDCunningham Browns will be making the 6th pick at the end of 1st quarter
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@TheSG_Podcast Well he will go down as one of the Buckeyes of all time
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@shuddupmeg Hedgy makes a few adjustments and suddenly he’s Aaron Judge
This leads me to believe he was going easy on the league for years
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@IsaacOkoroFan Don’t think it’s a question imo. You got Harden and Mitchell starting you need someone that can bring defense on the POA and Dean does it the best. Again with Harden and Don on the court you shouldn’t need much offensive production from the SF
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@JacobsFieldRBW Could of added De Vries or De Paula to an already stacked hitting core of prospects but noooo
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Is Emmanuel Clase now the most hated Cleveland player ever? Make sure to let me know with a middle finger in the comments of the quoted tweet below.
And if you’ve always wanted to levy a middle finger at me, use this as an opportunity because I won’t be able to distinguish.
Always the Jake@JacobsFieldRBW
WOW: Guardians reliever Emmanuel Clase is now up to his neck in federal charges and faces up to 20 years in prison if convicted. Coulda been on the AL version of this list but nooooooooooo
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