Rally for Ramey
How we got here:
On Friday, January 23rd, we had planned to leave for a family trip to Tahoe to visit Casey and Katie and take Ryder skiing for his 6th birthday. On Friday Ramey woke up around 3:30 am complaining of neck pain and tingling in his arms and legs. He took some Alieve, and went back to sleep, but still had pain when he woke up. He took it easy in the morning but decided he still wanted to try to leave friday night, as planned. We drove up that afternoon, but he had a hard time sleeping friday night due to the pain in his back and legs. On Saturday morning he woke up with the same pain and decided to go to a chiropractor. He felt great for about 4 hours. He took Ryder skiing and Ry was actually skiing for the first time. Ramey was so excited to be able to teach Ry. As soon as Ramey was done, he got back to the car and looked at me and said, "You have to drive babe, I cant feel my legs." Saturday night the pain continued. He was having a hard time getting comfortable. He woke me up at 1:00am and said, "Its time to go babe, something is wrong."
We spent the night and day on Sunday at Barton Hospital in South Lake Tahoe doing tests. We did x-rays, a CT scan, a few MRI's, blood work, etc. They didnt find anything wrong. After 18 hours in the ER, they transfered us to Renown hospital in Reno. As they suspected it may be something Neurological. We spent the first 3 days under going more tests. On tuesday an S.S.E.P (nerve conduction test) and Wednesday an E.M.G, where the neurologist determinted it was a rare disease called GBS (Guillian-Barre Syndrome) (AIDP). At that time we had very mixed emotions. We were relieved, but scared.
This is an auto immune disease where his immune system has attacked his nervous syestem. The disease needs to run its course.
On Thursday night (nearly one week after this began) he was having trouble breathing. Most of the muscles in his body had stopped working and his lungs had been one of the last to go. He was moved from the Neuro department to ICU on Saturday morning. He was placed on a ventilator to breathe for him, and also got a feeding tube on Thursday.
Saturday morning (Jan 31)he was sedated to get him on the ventilator with as much comfort as possible. He woke up at 2:00 pm on Saturday afternoon. It was relieving to see his beautiful blue eyes. By Saturday afternoon, he could blink, nod his head, and squeeze your hand, and by Saturday night he could give you a good ol' Ramey thumbs up.
As the reality of the situation sets in, Ramey was our only source of income, as I have been home raising our 6 month old baby, and 6 year old boy. This is very difficult and very humbling, but realize we cant do this on our own. His recovery will take anywhere from 1-3 years. We are grateful for any donation, small or large, to help us get thru this difficult time. Thank you all so much for your love and support. It means the world.
~ Much love,
Lindsay, Ryder, Keaton
In the first words of Ramey, that he has communicated thus far, "We will get thru this together."
Something that has been difficult is the lack of independence that Ramey- and our family has had to accept. We have been focusing hard on finding a home for our family. Besides the obvious influx and ridiculously high priced rentals, we keep hitting the same walls. And then I question how anybody with only disability income, no jobs, and two kids is ever supposed to find somewhere to live. We've tried explaining our situation, not explaining our situation, and everything in between. It seems that some people won't even give us the time of day.
SO! Our family is ready to get our lives back. We are looking for at least a 2 bedroom/1 bath (2bath is better), washer/dryer, preferably gas utilities, and a garage, (or some sort of storage). We are open to Boulder Creek, Ben Lomond, Felton, Scott's Valley, Santa Cruz, and Bonny Doon.
Making rent will never be a problem, we have the means, and can prove it. My parents are also more than willing to co-sign, as the see the predicament we are in. Ramey and I anticipate jumping back into our careers this year.
We are asking all of you for help. Any lead, or opportunity would be greatly appreciated. We realize that at this time, the only way we may be able to find a home is through you, our friends and community.
For us to be able to take care of our family and have our own home would do wonders for our spirits. Launching us, and Ramey to the next level of recovery.
Thank you so much for any help!
Sometimes I find myself wondering what was harder. I know the answer is seemingly obvious, the hospital was some of the hardest days of my entire life. Laying next to my best friend with endless possibilities and uncertainty running through my mind. Just waiting for a sign of hope to when we would go home and return to our 'normal' lives. The truth is nothing could have prepared us for this part of her journey either. The daily challenges we face are different from the ones there in Reno, but they are challenging nonetheless. And the idea of returning to a normal life, was nothing more than a pipe dream.
Now don't get me wrong, we have found joy and happiness and trying to return to some of our old favorite activities. Over the summer we have gotten Ramey in the ocean a few times, going to the boardwalk, Disneyland and Medeival times. We managed a week long road trip, packing and repacking every day with the pack and play, cooler, wheelchair, suitcases etc. (if ya got kids, ya know). We spent lots of days riding the bus to Santa Cruz to go on an adventure. Lunch on the wharf, which always warms our hearts. We got to attend Ryders baseball games, something we missed out on the spring. We watched Keaton turn from a sweet little baby into beyond wild toddler. We finally got to go on the Chardonay II, the sailboat Ramey used to work on, and watch the sunset from the water.
Okay,okay, so when I miss the beautiful things we did all summer, I feel lucky. Lucky to live, lucky for the health we do have, lucky to have such wonderful, vivacious children, and Lucky to have such a strong willed, determined, loving man by our sides.
Physically things have slowed down. At one time, it seems like there were big changes weekly. This plateau was to be expected, but now we must find encouragement in the small things like opening a bottle of water or a can of soda. Or getting his left hand to his mouth with a water bottle. He's able to get around on his feet more, short distances, and he tires easily. Weve gone into a restaurant and sat at table, with no wheelchair, and nobody starring. People do look, because his walk isn't all that smooth, but it's nice to not have to rearrange the tables and chairs everywhere we go.
His left hand is doing better. We continue to use the paraffin wax to do some deep heating, then I work on his fingers like his OT used to. We work out Monday Wednesday and Friday and try to swim on Tuesdays and Thursdays assuming that nothing comes up ;-) About a month ago we started going to a water aerobics class. It was great to see him get back in the water. The first few times he swam laps, his legs just kind of dragged behind him, but recently he's been able to have them participate more. One woman in our class can't believe how beautiful his stroke is. So swimming is something that we will be doing more often!. It's not only good physically for him, but plays a role in this mental game too.
Last weekend he got on the bike, he didn't go far, but he didn't fall. So I'm excited to do some bike riding in the maybe not so distant future.
He got his first cold, which takes my breath away. Again facing fears of uncertainty, but only clinging to hope and thoughts that everything will be okay. It's the first time he's been sick, and it's been really hard on his body. Something he needs his motivation and it's difficult when you're under the weather. He's been down for over a week. But it's motivation Monday, so we fully intend on getting back on track today! (Regardless of the fact all 3 boys are home sick.)
The thing that's hard for Ramey is that his mind is healing faster than his body. He wants to do so much and push his body so hard, but sometimes it's hard for him to slow down. Resting is not one of his choice activities, so as you can imagine it is been hard on him mentally and physically. It is difficult moving into winter because winter is when nature provides its playground for us. The swell has been pretty good, and the snow this year is expected to be epic. Considered adding insult to injury.
I'm trying to convince them that we're just taking a year off. Tho standing on the sidelines is not one of his strengths, I'm by his side thru all of this. Our kids will ski, and we will sit in the lodge together, and that's OK, it's just one year. He will try to make me ski too, and enjoy my day, but the truth is, I would feel guilty. We are a team, we are in this together and I'm not going anywhere until he's 100%- sorry babe!
Through all of this we have gained so much perspective, on everything, family, love, life, struggles, problems, miscommunications, etc. And in the end, we have both learned so much from this, and we both continue to grow every day. We all have our moments, and I won't deny that is difficult. I won't deny that sometimes I sit and cry and just want to give up. You know that southwest commercial "want to get away.." Just kidding.
But really, to be honest, this has been really hard for both our lives. Sometimes it's like groundhogs day, or treading water, or swimming against a current.
But guess what? We are swimming hard and we are getting there. Slowly but surely, we will get there. I'm thankful for Ramey everyday. His spirit and positivity continue to encourage and inspire those around him daily. Our kids are so fortunate to have such a beautiful influence. Oh, and by the way, did I say, he can pick up the baby now, and hold him!
The love and support from our friends and family has been paramount. Enjoying our social life and hanging out with friends has been very therapeutic. This whole community is totally behind us while we try to get back on our feet, literally. We are thankful for everything everybody has done for us. We are looking forward to a healing winter, and lots of rain too!
We took our first trip down to the beach for our friend started birthday. We went a little early so we could go on a walk. We got him into his "beach wheelchair". It wasn't very comfortable for him, but it was priceless to be sitting at the waters edge with all of my boys. I could see the joy in Rameys face while he was watching his boys play on the same beach he grew up on.
After that, we went to meet up with our friends. Ramey had to transfer back to his regular chair, but our friends were still down closer to the water. We went into check out the crows nest beach party. I left Ramey there with a few friends so I could run and check on the boys. After about an hour and a half of running back-and-forth from Ramey to the kids my best friend said, " why don't we just move the party?" I felt really guilty about making everybody move, but she said so simply "we have a friend in wheelchair, we got to do what we got to do, you know?" I have this brief moment where everything felt so simple and though "she's right, we can do anything, just differently." We move your party to where the cement medicine. We stayed out till nine. We enjoyed our first beach sunset with our toes in the sand.
I also wanted to share what an amazing Fourth of July we had. We had one Ramey's best friends (Jen, John and fam)come camp for the weekend. On the fourth they went to visit family in Santa Cruz for the day, but we decided to stay local and enjoy our beautiful little town and enjoy the culture of our community. my parents, lame, writer, Keaton and I went down to the pancake breakfast at the firehouse. Then we enjoyed the parade. Then headed over to "Lumberjack Days" and enjoyed some logging culture. Lol. We walked down to the junction to the "Gold Rush".Ry got to play with lots of kids, pan for gold, play in the river, dance to music and enjoy the hippie side of our community.
After we got home from an action-packed morning, we got Remi into our pool. It is about 14 feet in diameter and almost 3 feet deep. We took his transfer bench, put in as high as it could go, then he was able to transfer all by himself into the water. (more like a face plant, which was fine with him holding his breath.) He swam in circles and really enjoyed the buoyancy and freedom his body felt. We are going to be practicing swimming, and have high hopes to get him onto the board in the ocean in the next month. (not like you will be doing any gnarly barrels, just tried to get him on his tummy to float and push him into some small waves.
Rame has made some amazing strides in his recovery, and by strides, I mean just that! He has been doing very intense therapy, and working very hard. He can now free stand for about 60 seconds. We have been walking with only one hand on the counter. He can also stand for longer periods of time against the wall, while he does squats! We're trying to have him use his walker instead of this wheelchair. He is using it more and more, especially around the house. He also likes to go up and down the driveway, which is huge. His physical therapy, seems to be progressing well. He is visibly stronger every day! We are starting to look at our outpatient therapy. He will be ready in the next few weeks. Which means, we are coming up to another transition. Though each transition is difficult, we are at step closer to where we want to be.
Occupational therapy is going well too. We are trying a lot of different avenues to try to get his left hand to come back. We bought a paraffin wax dip (which is great for me too ;) The Deep heat gets trapped and loosens the joints in his hand before in OT session. He is taking glucosamine chondroitin with MSM-whose goal is to lose in the joints as well. In the last two weeks we have actually seen movement for the first time!
We wanted to thank Sandbar Solar and Electric and Allterra Solar for putting on the dodgeball tournament back in June. Great music, great food, great people, good times! It was such a fun event and we wanted to thank everybody who came out to support us. Thank you to Dale Friday Reality for having a booth at the Santa Cruz street fair for our benefit. Thank you to The Boulder Creek "meet-up group" who have been working hard to put together numerous fundraisers for our families benifit. Including the past 2 flea market events. Ramey and I are so excited to be fortunate (and healthy) enough to attend the fundraisers this community has so graciously organized for us.
The Boulder Creek meet up group has most recently been working so hard on the spaghetti feed. It is going to be a great local event right here in Boulder creek. The reggae band "Blazeen" from Santa Cruz are going to be jamming. There will be lots of kids activities, and fun for the whole family. The event will be sponsored in part by Santa Cruz pasta company, Beauregard vineyards, the mountain mechan, and Chardonnay Charters.
13333 Middleton Ave
Boulder Creek, Ca
When: Saturday July 18th
Kookland Classic Foamies Only Team Surf Contest
When: Saturday, July 25th, 7-4
Where: 1st Peak Pleasure point
Put on by the Pleasure Point Night Fighters
See Facebook page for more info!
We thank you all for your continued love and support. We are on our way!
Lindsay and Ramey
I am a caregiver for IHSS..I get full benefits on part time work, I make 11.90 an hour and my husband is one of my clients, if your client has insurance at all they pay for the caregivers(he chooses who or they can give you referrals) this seems like it might be helpful for you? YOU can become his caregiver..they come, assess him and give him a number of hours. Then YOU are allowed to work them by doing what you do now. Caring for him. I have been doing this for 7 years and I can't imagine doing anything else, I love the work. Just thought I'd share with you as it might help with extra income during these trying times. prayers always!
I am so glad things are progressing. I know it must be very hard. It makes me realize to be thankful for each day.
I always want to cry when I read your posts. You both have so much courage.
Sending love & healing for you Ramey ❤️You are a strong man & your strength and spirit will prevail! I can't wait to see your smile & meet your little ones & your wife someday soon I hope! Get Well!!
Ramey I think this is my favorite photo yet! Determination is written all over your face and it's SO GREAT to see your progress. There is so much love surrounding you always =)
I'm glad to hear that you will be going home soon. I'm going to Santa Cruz the end of June. I hopefully will be able to come by and see Ramey and meet you. Your family continues to be in my prayers.
Saw a great picture of Ramey on Facebook posted by Ryan Beauregard. He looks so happy. I am wishing you all the best Easter and continued recovery!
Lindsay, I'm so glad to hear that Ramey had a good weekend. Besides myself, Ramey and your family are on the prayer chain at my church. I am happy to hear that he is taking more steps forward, instead of backwards. I'll be keeping you in my prayers.
I am so, so happy things are going better. Have a wonderful Easter.
I am so glad things are OK. I was worried!
I hope everything is OK. No posts in 3 days. I am thinking good thoughts.
Hey Lindsay, we walked the same hallways that you are, back in 2013, when our son Kyle had GBS. I read your story, and I remembered the suddenness and the ferocity when Kyle was overwhelmed by the disease. I will think of you and Ramey and Ryder and Keaton, and wish for you strength and hope. If Ramey's parents or siblings ever want to talk, if I can offer any sort of support to them, or to you, I would do it in a heartbeat. My cellphone is 805-550-8028; my email is firstname.lastname@example.org
Hi Lindsay. I also left you a private message on your fb page. My son, Kyle Van Mouwerik, is a GBS survivor and will be of great inspiration to Ramey. We went through the same hell you all are in now in the VERY SAME facilities in 2013! I'm sure some of the staff have mentioned that they had Kyle there 1 1/2 years ago. My husband and I would love to be of support to you and Ramey's parents. The journey is still very fresh for us...Kyle is still recovering but has an amazing attitude. PLEASE be in touch with me....Lisa Van Mouwerik 805-550-3370 or email me at email@example.com.
I am so happy for the improvement.
Hi Lindsay. We are good friends of Ramey's parents and have known Ramey since he was 5 years old. I can't believe what has happened to Ramey, but I know if anyone can get through this, Ramey can. Between your strength and his, I am certain of it. You're an amazing young woman and we all thank you so much for the updates. Please tell Ramey that Ken, Michelle and Rachel send our love and we are praying every day for his complete and speedy recovery. Stay strong!
So glad you are starting the Speaking Valve trials!!!!! I know they are hard but that is the road to eventually getting the trach out, so encourage him to keep it up!!
Hi Lindsay, I am Mayda, Alana Thompson's mother. I want to let you know that I think that you are a very strong young woman. Everyday I look forward to your updates. Ramey will recover, we will all be here for you, Ramey and the babes. My faith tells me that someday we will have your Ramey back. In faith, M
Lindsay, Ramey came to my daycare when he was in elementry school. My son is Stephen Reyes. He and Ramey did lots of thing together when they were young. I'm so sorry you are going through all of this. I have put Ramey and your family on our prayer list at church. You have lots of people praying for a complete and speedy recovery. Keep your positive thoughts and your positive attitude, I know that will help Ramey fight this illness. God bless you and your family and my prayers will be with you all.
Lindsay, you and your family are in our hearts and thoughts constantly. We are praying for Ramey to recover soon. As difficult as it may be, keep the faith and take comfort in the fact that so many people fully recover from this awful illness. We're envisioning a positive outcome. Best Wishes, Beth
My heart is with you in this struggle.