Rowdy’s Rare ODDDyssey

When a Stranger in a Hospital Restroom Offered to Help "I can handle quite a lot on my own, but why should I, if I don't have to?"

Rowdy Ray was life flighted from north canyon in Gooding to the eastern Idaho regional medical center in Idaho Falls yesterday after having a tonic clonic seizure that went status a few times. Rowdy’s had a cold for a week or so and his X-ray showed that his left lung is full of fluid. This boy has already improved greatly with some IV antibiotic and steroids! I’d like to thank the St. Lukes air crew for taking such great care of us 💙🚁

September is Leukodystrophy Awareness Month 🦋💙

Rowdy’s VNS surgery and recovery is going well Thank you all for the thoughts & prayers.
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would you mind sharing this and spreading the message that we're here for those who are hurting?

Missing daddy ❤️

Who wants to hangout with Jim Kelly and help families like ours? Such a wonderful event. 💙🦋

Today is international wheelchair day 🦽 🦼
Rowdy had a wheelchair appointment yesterday and we decided to order a convaid trekker! It will take a few months until we receive it but I’m excited for Rowdy to have more support 💙

We met with a neurosurgeon at OHSU & Rowdy was placed on the surgery schedule for Feb 8th for the placement of a vagus nerve stimulation device (VNS). I’m praying this device will help with Rowdy’s epilepsy & improve his overall quality of life. 💜💜

Please pray for Emmett & his family 🙏❤️

I don’t have much time for a post but wanted to let you all know how Emmett is doing. Turns out it was more than a “neurostorm” or maybe the neurostorm was a sign of something else wrong. There’s been A LOT wrong with this admission. Normally we have a great experience. This time not so much and Emmett has suffered from it.

Anyway. He’s in the PICU and the worst we’ve seen him so far. Please pray. We don’t have a lot of answers right now.

Rowdy was diagnosed with Dysautonomia last week and I’ve been having a hard time sitting with the realization that my sweet boy’s damn disease is progressing. Dysautonomia affects the functioning of the heart, bladder, intestines, sweat glands, pupils, and blood vessels. Rowdy’s pupils have been very enlarged lately and for awhile now he has been having trouble with urinating, irregular heart rate, high blood pressure, unable to regulate his body temperature, breathing struggles, etc..Rowdy’s neurologist has prescribed him clonidine to help lessen the severity of these symptoms. Rowdy has also been dealing with increased seizure activity for weeks now - having more frequent monthly tonic clonics and countless focal seizures everyday. Rowdy’s epilepsy has always been difficult to treat - he tends to be resistant to many of the seizure medication options. I’ve decided to proceed with a vagus nerve stimulation (VNS) device and I’m praying it will be useful & beneficial for Rowdy. On a positive note, We had our appointment with United Access today and looked at accessible wheelchair vans & I’m so excited to begin the search for one that will fit our needs. I’m also working with Rowdy’s therapist to get him a tilt back wheelchair with more support since Rowdy’s dealing with so many new symptoms and losing some of his strength.

With this all being said. I appreciate those that have been a support for me during this time & of course Rowdy’s amazing medical & therapy team for continuing to do what’s best for Rowdy! ❤️🙏

My apologies, I’ve been awful about posting on Rowdy’s medical page but I wanted to share this…we are so BLESSED ❤️

💥$23,500 Donated💥 You voted, and the final 2021 recipient of the HB Mission is sweet Rowdy Ray. Suffering from a rare genetic disorder leaving him wheelchair bound, this donation will aide his family in purchasing a wheelchair accessible van to ease in his transportation.
💥💥$100,950 total 2021 HB Mission donations 💥💥
$50 of every Marilyn and Lyrik sold in 2022 will again be designated to be donated to an individual, family or organization in need. You will nominate the recipients, and if you make a purchase in 2022, will have the opportunity to vote on who receives the donation.
Learn more about the HB Mission here: https://heritagebrand.com/pages/donations
Learn more about Rowdy's story here: https://www.classy.org/team/393879

Thank you Hunter's Hope Foundation! Please share ❤️

Check out Rowdy Ray's team fundraising page for Hunter's Hope Foundation Help Rowdy's Wish Come True

This is amazing! Clinical trials in the near future for H-ABC leukodystrophy 💙

Oxford Biotech firm SynaptixBio launched to develop ‘revolutionary’ treatment for one of world’s rarest diseases - NK Media A new biotech business has been launched in Oxford to tackle one of the…

Prayer warriors 🙏
Rowdy had a seizure this evening. Both the Vancouver fire department and medical emt’s arrived and did a wonderful job making sure Rowdy was okay. During some of Rowdy’s recent seizures he hasn’t been breathing very well. Some prayers for recovery would be greatly appreciated, He’s still having some on going seizure activity.

Secrets of Loving Rare: I love the innocence of a child

🖤Parent let your kids be curious.

🖤Parents let your babies love on those that aren’t the same.

🖤Parents, it’s okay if your kids ask questions loudly about the boy in a wheelchair, we love that they are interested, we love that they are intrigued by him.

🖤Parents let them ask questions let them engage with those that don’t look like them

🖤Parents let us teach your kids about inclusion and difference and how to love those that are different

🖤And parents it’s okay for you to ask us about him also.

This is love, real love, the innocence of a child is a true example of what love is. I love when a child asks about Reed and his wheelchair. I love explaining to them that he has an owie on his head that makes his legs not work which is why he needs his wheelchair. I love explaining to them that Reed’s owie might not heal but we are working so hard to find a way to heal it.

This sweet boy came up to Reed last night and loved on him, he touched his face he hugged him and he asked about him. I love that his daddy came up to monitor his action and his mama watching in the background smiling at how sweet her boy was being.

Little kids see different but they also see another kid and they are curious. I have said it before I love sharing Reed I love to share about Reed. We love telling his story no matter how complex or simple we need to tell it. So please ask please engage please love on him and us by letting us share him 🖤🖤

Rowdy’s home and doing well besides a few small issues & I’d say he’s happy to have sissy home from her visit at grandma’s 💛

Just wanted to give a little update!

Rowdy’s doing really well! The medical team at St. Lukes has been very proactive about getting to the bottom of what could potentially be causing Rowdy’s reoccurring fevers. We are still waiting on some lab results but the doctors believe these fevers could be from Rowdy aspirating on his medication, food and liquid intake due to his structural issues and dysphagia. Tomorrow morning Rowdy’s schedule for surgery to have a G-Tube (feeding tube) placed, the surgical team was also able to coordinate with ENT so Rowdy could get his new set of ear tubes placed. We might have a few more days in the hospital depending on how well Rowdy recovers from surgery. Please keep Rowdy in your thoughts & I’ll update tomorrow after surgery 💛🙏☀️

Adding a Tubie wishlist if anyone would like to help with some needs 💛

https://www.amazon.com/hz/wishlist/ls/H5GZOXHGP5B1?ref_=wl_share

Please keep Rowdy in your thoughts and prayers. We swung into Walmart to grab a few things, he stared seizing and flew backwards in the cart until I was able to get him out and on the ground in the middle of the isle to give him his diastat. A kind gentleman walked down the isle and happened to be a physician, He called the paramedics and stayed with us until the paramedics arrived. We are in the ED waiting to be admitted upstairs. Rowdy’s doing well and responding to being poked, he’s resting at the moment while we wait on some test results. Hoping to get a better game plan from neurology to see what they can do to prevent this from being a regular occurrence. 💜🙏

Rowdy tried out the KidWalk today!

Hello everyone 👋

I wanted to give a little update! Rowdy has been super busy!

We recently established therapy care at St. Lukes in Meridian. Rowdy has OT on Monday’s, PT on Tuesdays and Speech on Wednesday’s.

I might post a little more and share the goals we are working on in each therapy as a reminder of what we are working on or trying to improve - sometimes my sleep deprived mama brain doesn’t like to remember things 😆

On Monday in OT I was shown some pretty neat facial massages that help with Rowdy’s sensory input to make teeth brushing a bit easier for us! So far he enjoys it and it’s been super helpful!

Today in PT we took rowdy’s measurements to send off so we can try out a KidWalk gait trainer! I’m so excited to give that a test run during his upcoming appointments!!

For both OT & PT we are working on getting Rowdy to work on his balance and use both hands! He’s a dominant lefty but we are pushing him to use his right hand as well - he’s doing really great at using both hands to throw a ball now.

Tomorrow for speech we are still exploring device options. We’ve worked a few times with a eye gazing device and I’d be really excited to go that route for Rowdy once we get more comfortable with it! I’ve been signing “more” on a regular basis and he’s recently started clapping his hands again to sign for “more” it had been awhile since he has tried hand signs, I’m excited he’s getting the hang of it again.

I know with Rowdy we will face set backs but I’m so thankful when he learns and picks things back up again.

I’m always open to trying new things if any of you special mama’s out there have tips or tricks or advice on things we can practice at home shoot me a message 💓

We hope everyone is staying healthy & doing well.

Today is Purple Day 💜💜

We’ve faced countless struggles since Rowdy’s epilepsy diagnosis in December of 2018. From hundreds of seizures a day lasting less than a minute to tonic clonics lasting over an hour. It comes in all types & never gets any easier! 

We pray for all those who are affected by epilepsy ✝️💟

Look at this big boy!

Our goal the next few months is to work on using his walker daily.

Rowdy did so well during and after surgery! His adenoids are gone and his new set of ear tubes are in. Letting our sweet boy get some rest now ❤️

Rowdy had another round of dysport injections today & didn’t even cry! Such a strong boy 💪 💗 he also got to see one of his favorite therapist 💕

Rowdy hopes everyone had a wonderful 4th! 🇺🇸❤️ we have been busy! Rowdy has appointments back in Portland coming up which means another road trip for us! We are excited to see Rowdy’s doctors and therapist 🥰

Please keep our sweet boy in your thoughts! Rowdy’s been running a sudden fever and it caused him to have another seizure.