Journal: How's Dylan Doing?

Hey There,

We made a big step forward, trying out our soon-to-be home, our RV! For those of you who don't know, we will be living out of a motor home while Dylan is receiving treatments in Arkansas this summer. It's been quite a while since our family has ventured out for any other reason than for medical requirements for Dylan. This was a very positive accomplishment! Dylan has struggled with the thought of being removed from his little world, his comfort zone, so this was a big move in the right direction. I'm happy to say that Dylan did his part very well! I'm proud of both Stacey and Dylan for making a success out of our short trip! This was a blessed weekend!

We are also blessed to have found such a great deal on an older but in fine condition motor home. We are blessed to have found such an affordable campground to plant our flag this summer in Arkansas. Our temporary home will be just a mere seven miles away from the Spero Clinic where Dylan will be receiving treatments. So our daily commute for treatments will be a piece of cake to achieve!

The goal is to get Dylan better. The details are revealed as we move along our journey towards our goal! Stay tuned to see how our journey unfolds!

We hope this update finds you well!

All the best,
Michael, Stacey, and Dylan

5/26/2024

Hello Everyone,

I am excited to announce that our book, Move That Cloud, is now available to our Spanish-speaking community, thanks to the help of a dear family friend! My goal is to share our book with as many as we can, especially within our community and nation.

I dream of seeing our book in every elementary school across America, making it accessible for all our youth to read or have read to them.

Best regards,
Michael Smith (Dylan's dad)

5/24/2024

Hello All,

Exciting news! Our family's book, Move That Cloud, has won an award with the International Firebird Book Awards in the categories Children's Health/Mental Health and Children's Inspirational/Motivational. We also won an award with the Literary Global Children's Book Awards contest under the category Children's Inspirational. It is a true honor to be recognized, and it helps to further validate the message we are trying to convey to our young audience.

Hoping this news finds you well!

All the best,
Michael & Stacey

5/24/2024

Check out our book, Move That Cloud!

Written as a form of communication with our own son about personal growth during tough times in life.

Move That Cloud was written for Dylan. However, once completed, our family felt like our story was quite good. We felt strongly about our story's relevance to all young folks and feel the story is a good tool for starting conversations about important topics such as; self-awareness and perspective with anyone under the age of 12.

Check it out for yourself on Amazon!

All proceeds from the sales of Move That Cloud go towards the care of Dylan!

4/2/2024

Listen to the audio recording of our Go Fund Me article.

Go back to Go Fund Me.

Click here to learn more about the Spero Clinic.

3/30/24

Thank you to everyone who made a contribution to the fundraiser, Dancing for Dylan! Stacey and all our family members that were able to go had a great time.

As far as Dylan, we're stilling moving forward in a positive but slow manner. Please continue to pray for Dylan and his return to normalcy.

10/16/23

Listen to the audio for the latest update on Dylan and our family.

To summarize, Dylan is doing much better now than he was at the start of this year. We have noticed slow, but continual improvements in Dylan's physical and emotional health since starting a new medication back in May.

Overall, Dylan is still suffering from body aches and headaches that leaves him in discomfort. Dylan has also been struggling with anxiety for almost a year now, which at times, takes a toll on Dylan and our quality of life as a family.

Again, we are in a much better place now then we've been in for awhile. We are encouraged with the positive results we've been seeing the last few months; however, we have a long way to go.

Please say a little prayer for our family.

9/8/23

Hey There,
Some friends of ours have put together an event to benefit our family. You'll notice the details in the flyer posted just above. Please join our family on this occasion if you can. It will be a good chance to catch up with Stacey and show your support towards her and all she has been through the past - almost two years caring for our son, Dylan.

I personally won't be able to attend because Dylan still requires full time care, which either Stacey or I tend to. Although I wish I could be there, I'm very happy to support Stacey in participating in this event because she doesn't get the opportunity to enjoy good friends and her community very often.

So please consider spending your Saturday evening, September the 16th, at the Saints Peter and Paul Catholic Church Parish Hall (at the main Church), from 6-11pm. Spend time catching up with Stacey, Stacey's mother Ms. Shirley, and my mother, Ms. Debbie. Enjoy time with other good community friends, good appetizers, good baked goods, good music, and of course, a cash bar. There will be a live and silent auction as well as a 50/50 raffle.

If you're planning on attending, please plan to have fun and please have a plan in place to get home safe!

Thanks to Saints Peter and Paul for allowing this event to take place at their Parish Hall.

Thank you to; Dobbie Hurst, Ginny Boyle, Lisa Covey, Amy Cecil and everyone else who has worked so hard to put this event together, managing its every step!

Stacey hopes to see you there!

8/27/23

Our van, The Golden Wing!

Pray for our Golden Wing; she needs front brakes and likely a new head gasket :(

8/27/23

To all of you reading this, thank you for checking in. Those of you who have been following Dylan and his story the past year know that we've had a tough go of it. It's hard to update everyone about Dylan's condition with the lack of positive news to share. Positive results are slow these days, especially the past six months. Thankfully we have seemingly hit the bottom (Dear Lord, I pray that we have seen the worst, please. Amen). We are hoping for noticeable improvement in the coming months with the rehabilitation plan we are currently on.

It's been over a year now since Dylan's symptoms of long haul Covid started to set in. If I only knew then how bad it could get, I would have stopped all the world and tried harder to find a way to halt the evolution that we've come to realize today. Hind sight will do that to you. But honestly, I wish I was more capable of helping Dylan overcome his disease before it overcame him. Dylan went from being in physical pain with headaches. To walking with a cane. Then a walker. And finally a wheelchair. From there, Dylan's symptoms have continued to morph, leaving us in a state of disbelief. In short, Dylan is suffering from physical pain and emotional anxiety. It's been difficult for our family to endure. Dylan is sick and requires so much everyday to live and rehabilitate. It's a long and tiring day for both Dylan and Stacey. As the dad, I come in and help the best I can, where I can, but I have it much easier.

Our family knows and acknowledges that we are not the only ones going through stuff...but we are going through stuff. However, in the worst of times, so many wonderful folks have been there for us. We need prayer; we receive it everyday from so many. Meals; plenty have been offered and we've been spoiled. Stacey had to take time off to care for Dylan full time; assistance has been provided. In times of gloom; many have creatively lifted our spirits. We've been treated far too kindly. There's far too many people to mention in one space but you know who you are...you're family to us and we love you back. My dreams are simple. Get Dylan's life back and reunite Stacey back to her SSPP family in the fall.

In closing, please know that not all is bad here. Although Dylan isn't well, there are many enjoyable times during each day that we try to embrace for what it is. Just know that we do have a plan to heal Dylan, a plan composed of multiple inputs from folks in the space of mental and neurological health. We will improve. We will regain the chance for Dylan to live a fulfilling life, ASAP!

Until next time; God bless you, and God, please bless Dylan too! Amen.

3/28/23

It's been awhile and not much improvement has been made. It's been a hard few months for us, especially for Stacey. We are trying everything within reason and doing everything directed from the folks who see this often and know more than Stacey and I. Please know that we are still here and hope to report some better news soon. Please take care of yourself and family. Please continue to pray for ours.

1/29/23

It's been awhile since you've been updated about Dylan. In some ways a lot has been going on and in others, not much has changed. Unfortunately, the not much has changed part of things is Dylan's condition and as you can imagine, it's been a lot on Stacey and I. To add to it, work has been chaotic for me, which hasn't helped and recently, Dylan has been suffering from FND seizures. The seizures have made Dylan subconscious about the people around him due to the fear of having a seizure in front of anyone not mom or dad. Because of the seizures, which happen multiple times a day, we've had to stop all therapeutic services outside the house. Until we can calm his seizures and the anxieties about having seizures, not much else can be of concern.

We have now chosen to take Dylan off a medication we believe is contributing to his seizures. Hopefully we will notice a difference in a couple weeks. From there we will proceed cautiously with any other medicine. We've been trying medications, responsibly, since July. It's time, now that nothing has seemed to help, to try and see how Dylan feels without any medications at all.

Please say a prayer for Dylan and Stacey!

Please say a prayer for Dylan's grandmothers who miss spending time with him!

We hope all is well for the reader, you, and your family! Happy Holidays!

12/11/22

Going into week number two of a decline. Dylan is struggling with headaches and the inability to get comfortable. Dylan is being tortured by his current condition. We have an appointment tomorrow to see a neurologist at the Kennedy Kreiger Institute for pediatric care. We hope to get some guidance out of this visit. We pray for some relief for our son. Please pray with us!

10/25/22

Tough week for Dylan. How's it go...one step forward, three steps or so back?! Dylan has being struggling with headaches, dizziness, and overall discomfort this week. It's been so bad that we had to cancel all therapy appointments. However, Dylan will get through this!

Please keep Stacey in your thoughts as well, she is there every moment, fighting to keep Dylan calm and comfortable.

10/22/22

Dylan is feeling the drain of heavy exhaustion from interacting with family yesterday. It is a normal symptom for those with FND as a result of to much stimulation. It takes time to heal and build the necessary tolerance to live a normal life with friends, family, and the outside world, in general. Dylan's condition today did not however effect his first physical therapy session as it was a introduction session. Dylan will rest up and prepare for Wednesday's session. Please continue to pray for Dylan's recovery...he has a long way to go!

10/17/22

Great family day for Dylan. Finally able to see some family he hasn't seen in many months. Dylan's speech has improved very much and it was a blessing to hear him conversing and laughing with others!

10/16/22

Dylan has had a good week. He had some therapy appointments and a doctor checkup. Moving along slowly but surely.

10/15/22

Dylan's overall awareness has improved very much since the feeding tube implant. This might mean we are on our way to an upward trend through his recovery!

10/10/22

We had a positive day with Dylan today! He's trying hard to speak and we've had a very enjoyable day catching up with Dylan in conversation! Thank you Lord!

10/09/22

Day one: Stacey and Dylan are glad to be home and I'm certainly happy they are back as well. Our pack is whole again. Unfortunately, starting off, we had trouble with Dylan's feeding machine. A rep came to the house to work out the issues and Dylan's feedings are now back on-track!

10/7/22

Well, our Golden Wing failed us. Our van broke down just outside of Baltimore city while trying to get home late last night. However, we waited it out at a nearby Wal-Mart which actually worked out well. It was our first family outing since May. We had fun and luckily the van, after cooling while we were shopping, had cooled down enough to continue our trip home. We ended up making it home safely, around mid-night.

10/7/22

Dylan's still resting and progressing well with his feeding. It's likely that Stacey and Dylan will be coming home late tomorrow evening (Thursday)! The Golden Wing (our wheelchair accessible van) sits in the driveway, awaiting the time to rescue them from the big city and return them home safely!

10/6/22

After an active day yesterday (Sunday), Dylan has been tired and hasn't since communicated through speech. It's a journey of highs and lows. Otherwise, Dylan's feeding tube and nutritional intake routine is going as well as it possible can. If things keep going well for Dylan and his feeding, it's possible he will be discharged by the middle of the week. Fingers crossed!

10/4/22

Big positive today; Dylan's energy has improved so much that he was able to speak this afternoon. His speech wasn't perfect but very understandable. It was a blessing that both Stacey and I enjoyed very much. We talked about our plans to get better. We talked about all the things and people we miss and how hard we're going to work to get it all back! We laughed and enjoyed each other! Thank you Lord, for today! Before today, it had been many, many weeks since I'd personally heard him speak.

After an active afternoon of interactions, Dylan grew tired and has been resting ever since. I'm praying that Stacey and Dylan are able to get some rest tonight. Stacey especially - she's working so hard, tending to Dylan's needs.

10/2/22

Please pray for Stacey & Dylan, their nights at the hospital are sleepless. On a positive note; everything's going very well with Dylan's feeding tube and his nutritional intake.

10/01/22

Day two at Johns Hopkins; Dylan got his feeding tube in this afternoon and is doing well! Dylan and Stacey had a very long night in the ER as they didn't have a room available for them in the hospital. Please pray for Stacey; no sleep for multiple days and sitting in a chair monitoring her young son would wear on anyone. She's tough though...real tough!

Dylan & Stacey will be at Johns Hopkins for as long as a week while they monitor Dylan's health and reaction to the new nutrition ingestion routine.

P.S. Stacey & Dylan did get placed in a room in the hospital around 7pm this evening!

9/29/22

Got a wheelchair accessible van, just in time for another round at Johns Hopkins Hospital. The trip was much more comfortable and safe for both Dylan and Stacey. We could not have gotten such a vehicle without the support of our community - you! She (the vehicle), is old enough to drink but she gets the job done!

9/28/22

We're hoping to get our outpatient therapies in order soon (awaiting scheduling and prerequisite process). Hoping to get a wheelchair accessible vehicle next week. This is a must because of Dylan's current lack of core strength and upright stability. Please continue to pray for Dylan (Stacey and I too). He is having a rough time. Atop the above mentioned; we are set to get his feeding tube procedure next week as well. At least then we can eliminate the concerns for lack of nutrition and hydration.

9/23/22

We had to try another recliner chair option. With Dylan's current condition, he easily falls out of the current chair we have for him. Dylan falls asleep easily, when resting in a chair, etc., leaving him vulnerable to fall out. At this point, Dylan requires full time supervision.

9/17/22

Dylan is really struggling to get enough fluid and nutrition by traditional means. We have an appointment with Johns Hopkins, next week, to discuss feeding tube implant.

9/17/22

With growing concerns of Dylan's safety while riding alone in the rear of a standard vehicle, Stacey and I realize that a wheelchair accessible vehicle is a must. As it is now, Dylan requires a rider in the rear with him to stabilize his head, while riding.

I Believe we've found an affordable option in Salisbury. We will update you with our findings!

9/16/22

SSPP's PreK-1 class made an extra special art piece for Dylan! Thank you. We love it!

9/10/22

Dylan & Stacey are happy to be home! Rested today. Tomorrow starts our new daily schedule, including life skills and physical rehabilitation.

9/8/22

Dylan & Stacey are happy to be home! Now starts the next chapter in Dylan's journey to recovery. It's not going to be easy, so please keep us in your thoughts and prayers!

9/7/22

Annette & Connor, purchased and delivered a recliner chair for Dylan. We will use it in the downstairs living room. This accommodates his needs better than what we already had. Thank you both!

9/6/22

Thanks to your support, we were able to purchase a used stair lift to accommodate Dylan's needs. Also, Dylan and Stacey are coming home tomorrow!

9/6/22

Thank you to the 5th grade class at SSPP! A lot of time and effort was put into this project. I delivered it to Dylan and Stacey today (Saturday), and they loved reading all the personal messages! Dylan has it up in his room where he can see it!

9/3/22

Thank you Angela! You found it. You picked it up. You delivered it. Then you installed it! One problem solved for Dylan's return home, thanks to you!

9/2/22

Still at the pediatric hospital; Dylan's swallowing has slightly improved. At this point, he doesn't require any further IV therapies! Today, Stacey and Dylan (with the aide of a therapist), practiced getting in and out of the wheelchair to a vehicle. They did really well! We are prepping for a discharge, mid-next week!

9/1/22

Stacey and Dylan are still at a pediatric hospital. Dylan is trying to regain the ability to eat and drink. Meanwhile, Dylan is still involved with daily therapies of multiple disciplines.

8/31/22