Fundraising for Fish
Where do we begin? The beginning I guess. Fisher was injured at birth by misuse of a vacuum and has spent his life in and out of surgeries, medical appointments, doctors offices, and therapies. Up until now we have managed it alone. He has seen more specialists, doctors, hospital, etc than I can count. We moved from Eastern Kentucky to Knoxville, TN to give him more access to doctors and therapies. Helping him thrive has been our life and where the majority of our "extra" money has gone for 10.5 years and I wouldn't change a thing.
Even with all the therapies and medical assistance he has always had problems and pain while walking. But he adapts and deals and so rarely complains. It is the world he knows and is comfortable with. In November of 2019 he got viral meningitis and spent some time at East TN Children's Hospital. He seemed to recover from that and we went on about our lives preparing for Christmas. I noticed his walking/gait was changing some and he started talking about his legs and feet feeling numb. He started having more and more pain while walking. I made an appointment with his primary care to see what we could figure out who referred us to Orthopedics in Jan. The orthopedic doctor was a real ahole and said that his xrays were fine. And that "Not every kid can be the fastest in the class" I pushed back and said I wasn't concerned about his speed but was concerned that my 10 year old can't walk more than a few feet without significant pain. (In full disclosure I just wanted to publicly complain about that ortho because it still pisses me off, thanks for humoring me). Things kept going downhill and long story short three weeks from that ortho appointment Fisher ended up inpatient at Vanderbilt Children's Hospital because he couldn't walk and by that point his pain was out of control almost nonstop.
He spent 5 days in Vanderbilt and we left with a diagnosis of Amplified Musculoskeletal Pain Syndrome (AMPS). It was likely caused by the viral meningitis sending his central nervous system into overload. Since he already had chronic pain in his feet and legs - the AMPS is most concentrated there. I'll be honest - I was slow to accept this diagnosis. I want something a pill can fix. However, the "good" news is that AMPS does have a high success rate with INTENSIVE and EXTENSIVE treatment. The bad news is 1) that treatment hurts like hell and 2)that treatment is going to be expensive. We are going to try outpatient therapy first - He is currently scheduled for physical therapy 3 times/week, aquatic therapy 1 time/week, Occupational Therapy 2 or 3 times/week, Cognitive Behavioral Therapy 1 time/week. Each week that is $240 in copays with our insurance. Additionally he will have appointments with Vanderbilt Rheumatology in Nashville and primary care visits here in Knoxville to manage the treatment plan. And if this doesn't work he will be doing intensive inpatient therapy about Cincinnati Children's hospital for 3 or 4 weeks (currently getting on the waiting list for that). We will cross that bridge when we get to it but that will involve one of us staying in Cincinnati for the duration with him. So the treatment is going to suck. It is going to be extremely painful for him as we are going to be trying to teach his body to deal with pain in a different way. But he needs it. And we will figure out a way to juggle our lives to make it work for him. To make things a little more challenging - we are still trying to recover and pay off bills from last year's unexpected medial calamity of Shawn trying to die and being off work for 3 months and then Fisher having a big nose surgery followed by the viral meningitis.
Our wonderful friends and family are asking what they can do to help. And I am the worst about accepting help. I love helping and showing up for other people but being on this side sucks FYI. But here we are.
So here go - ways to help right now -
Keep our family in your thoughts and prayers. Especially at night. Nights have been really really hard. So I will take all the love yall can send our way (light workers I’m looking at you) . It sure can't hurt.
Know that our emotions are running high right now. Laugh with us - we love to laugh. And don’t be surprised if I randomly cry. That is a new development with this for me. While Fisher has never been the most *ahem* outgoing kid in the world- when he’s in pain he either shuts down or gets super irritated. And keep giving attention loving Willow all the attention she normally demands ;) it’s been hard on her to see her brother inso much pain and her parents so worried. We want her to be able to laugh, be crazy, and wild like normal as much as possible.
Bring wine (for me, not Fisher). Ha! My friend Crystal showed up the other night with a bottle of wine and some other things for Fisher and it was soooo helpful.
Copays - every therapy visit he has is a $30 copay. Not bad when you have one. But when you have 8 therapy visits plus doctors visits every week - it adds up faster than I want to calculate. So any money donated to us will be going to the copay fund. I set the "goal" of this at the Out of Pocket max for Fisher this calendar year - $5500 (Our family OOP max is $11,000). It was very thoughtful of Fisher to start this process in the beginning of the year. Once we hit that we won't have to pay copays anymore.
Fisher does really well in water. So we are getting him to the pool as much as possible. I am considering looking into a hot tub or something like that for our house that he could use. I haven't even looked yet but if you know anything about hot tubs and/or see a used one or a good price on one let me know.
And finally in complete transparency - our family has a cruise scheduled for spring break. We saved up and paid for it before Fisher's viral meningitis as a celebration for Shawn surviving last year and Fisher getting through his big nose surgery like a champ. Right now we aren't sure we are going to be able to go. We can deal with Fisher not being able to walk much (he is getting a wheelchair for school use and for anywhere he needs to walk more than a few feet as he deals with this AMPS) - but the out of control pain has to be in control before we go. I PRAY the pain is under control by then and we can go because Fisher has been so excited about it! He really wants to go snorkeling. I just wanted to be up front so it didn't look like I was asking for money and then taking a cruise with it! The cruise was paid for long ago.
We have received support from so many people. Support shows up in countless ways and we appreciate each one. Thank you.