Everett's AMC Journey

Help support Everett!

I created the story *EverettsSurgery. Please consider donating to my cause. *spotfund is the easiest place to create beautiful and free online fundraisers. It takes just minutes to start raising money today.

Casts are off! And feet are looking great 😊
Everett enjoyed a foot spa this evening and we will be having an appt with Dr. Feldman tomorrow 💙

Traveling back to WPB to get casts off!

On our way back to WPB for surgery tomorrow. Everett’s right big toe has been locked in flexion since January and needs to be released (again).

Finally some nice enough weather to go for a walk with my 3 littles 💙💙💙

Everett also got to try out a power chair today and it was awesome! I was too concentrated on him to remember to take a video, but we’ll be getting to use it at home this summer when school is done.
We also finalized details on ordering Everett’s manual wheelchair 🧑‍🦽

And…cannot wait to get his new braces in a couple of weeks! Everett has been so uncomfortable in the pair he has and these new ones will be 200% better. Everett has improved with his walking but fights back crying because of how much his braces hurt 😢
More pictures to follow soon!

It’s been quite the adjustment being back home from Florida. Trying to get therapy scheduled and balancing everything else going on has been challenging. Everett continues to do well with PT but I’m still not happy with his braces (even after they were made twice in Florida). We’re going to be getting a third set made next month in NYC! After seeing another AMC kiddo get her braces made by this NYC clinic, I decided to follow-suit and get Everett in there too.
Although we haven’t been going to PT as frequently as I would like, Everett is LOVING preschool! He is very talkative and outgoing and has so much fun with the other kids! He’s in a gen ed classroom and has a 1:1 aid to help him with everything. He is also getting PT and OT services at school too 💙

We are so thankful for the amazing care Everett has received at Paley, and especially for Dr. Feldman and team.

This morning we stood with the walker and tried taking a few steps. It was so early, he wasn’t really interested in using the walker.

Tried on the harness and stood on the treadmill. Everett wasn’t ready to try stepping today, but that’s okay, at least we got him in the harness.

I could cry. That’s a face of real determination. This is Everett’s first time standing!!!! He even did it with no support 😭 cannot wait to see what else he is going to accomplish with PT these next few weeks. Tomorrow, planning to use the harness and treadmill to see if he can get some supported steps in.

The Before and After! Look how straight these feet are!

Getting casts off this morning and then braces at 11!

Mario Kart with friends!

He’s trying to smile, even with all the pain 🥺
Caudal blocks do not work for him. He’s really uncomfortable and we’re trying to get his pain under control
But he’s happy that his guys have matching Christmas colors ❤️💚

Everett is back in surgery. This morning was rough. He has a ton of anxiety, understandably. Procedures should take about an hour and a half, not too bad compared to what he’s been through with his legs. I’m relieved that this is the last surgery for a while. Three operations in less than 2 months is torture, at least that’s how it feels for me.

**Long Update**

Going back to right before Halloween, we were starting to do serial casting on his arms which was to help regain some flexion (bending) in his elbows and extension (straightening out) his wrists. Everett was supposed to do cast changes every 3-4 days but that didn’t happen. He did NOT sleep at all for 2 nights. He was more uncomfortable with these casts on than he was post-op on his legs. The casts were applied on a Wednesday and we tried to give it a couple of days to see if he’d get better but after not sleeping 2 nights in a row, we got them removed.
Everett had his second post-op appointment and the doctor expressed his concerns for how Everett was mentally handling everything. I didn’t think of it this way but these leg surgeries have been absolutely traumatizing for him. I figured since he was recovering well and had been tolerating stretches that he was doing “okay.” Putting him in the arm casts was too much and I’m thankful for a doctor that spoke up about NOT doing this serial casting right now. Our time here is so limited that we wanted to try and accomplish as much as possible with the resources. Everett has to return in 6-10 months to get the hardware out of his legs, so when we come back for that, we’ll do the arms then.

Everett’s legs: The femur bones are healed and his knees are bending well with stretches. His right leg will need some sort of procedure in the future because even with the 90-degree rotation at the hip, his leg is still rotated outward. This is because of the femur bone and more than likely, he will need an osteotomy to set the bone in a better position. Even though his legs are still slightly outwardly turned, his legs are straight! And you need straight legs to stand and walk.

Until today’s surgery, it’s been a lot of downtime and waiting. Everett’s legs are healed but he won’t be able to start standing until his feet are corrected. 3 weeks ago we started with casting on his feet, yes, more casts, but these didn’t bother him at all. One of the very best clubfoot doctors in the country recently joined The Paley Institute. We are so fortunate to have Dr. Dobbs here and to work on Everett’s feet. With just 2 cast changes, Everett’s feet were remarkably improved.

Everett has taken a break from PT because all that they can do right now are stretches, which are the exact stretches that I do with him on our own.
We are STILL waiting for insurance to authorize more PT sessions which we will need after his foot casts come off.

Originally, we planned to leave on December 18. Well, I’m not sure what I was thinking when I first set up his timeline of procedures. With this date, it doesn’t leave him enough time to work with PT because after today, he is back to no weight-bearing for 3 weeks. So, we are staying until January. John and Wyatt will need to return home right after the New Year, and I’m planning to stay down here with the rest of the gang for another 2 weeks after that. This will give Everett 5 weeks of therapy. I really want him to tolerate standing before returning home and resuming PT with his therapist in Michigan. I think this timeline is more realistic.
It just sucks being gone for so long and especially through all of the holidays. Oh well. It’s just this year.

With all of that being said, Everett is hanging in there. He’s stronger than he gives himself credit. He’ll cry sometimes when we are moving him in/out of the van and he’ll say, “I’m not being brave, I need to cry.” Oh buddy. A lot of his crying is out of fear of something hurting. He really isn’t in too much pain (I think) but he’s anxious and fearful.

Although being away from home has been rough for us all, there is an immense blessing we get to experience being here at Quantum House. The community is incredible. Every family here is going through some sort of surgery/procedure with their child and having that common-ground of understanding is so refreshing. Friends and family can empathize with us and love Everett through all of this, but unless you have a child with special needs/circumstances, there is a sense of seclusion we have. Not only are these kids surrounded by others with similarities, but they are experiencing acceptance from the siblings! No one feels “different” here. It’s such a safe place for these kids, it’s beautiful to see. I’m thankful that my boys are surrounded by special needs kiddos and especially for Wyatt to see that other families are going through this stuff too. All of our boys have new BFFs.
One of the most memorable things was just this past Sunday when a little boy, age 8, with AMC arrived with his older brother and their mom. This boy is remarkable. Not only does it give me hope for Everett’s mobility (although I’ve learned not to compare outcomes of mobility and function) this little boy seems so well-adjusted and outgoing. He is so open about what he has been through and is so loving. Yes, I want Everett to be just as mobile as this boy, but more importantly, I hope that he grows up feeling accepted, loved, and confident.

If you’ve read through all of this, thank you. We appreciate everyone that follows Everett’s journey.
💙

I’m way overdue for an update on what’s been going on with Everett. For now, prayers appreciated for tomorrow’s surgery. He is having heel-cord releases/lengthening and possibly tendon releases on his toes to help those straighten out.
I will have a more detailed update on all the latest things tomorrow while he’s in surgery 💙

Ending the week on some positive things:
1. John’s work approved him to continue to work remotely so he is able to stay with us the entire time!

2. We stopped giving Everett the Oxy med for pain and it has been so much better! The med was making him irritable and emotional and he wasn’t sleeping through the night. We’re doing just Tylenol once at night and he’s been tolerating the pain really well.

3. Finally convinced him to try sitting up! The PT told him if he can’t sit up, he can’t learn to walk and that really motivated him. We’ve been working on sitting on the edge of the bed and I’ve been forcing him to sit up in this wheelchair (the other one reclines and he just wants to recline in that)

4. Our insurance should approve unlimited therapy sessions! Just talked with BCBS and was informed that given his diagnosis, medical needs, etc., the code she gave me should cover more than the measly 30 visits we are given for the year.
This would be HUGE! because right now, Everett has only 6 out of the 30 visits left and after that, we will be charged $300 a session! That’s $1500 a week just for PT 😦
💙💙Please pray that we can get this covered by insurance!!!💙💙

Everett’s surgery is now tomorrow morning! And he’s actually excited! Every day he wakes up and says he’s so glad to have a straight leg ☺️
Prayers appreciated for tomorrow

We are 1 week post surgery and it. Has. Been. Rough. Everett has had 6 operations in the past and this has by far been the hardest, which was expected. This is a level of exhaustion I haven’t felt, even with having newborns! It’s not just the physical exhaustion of him hardly sleeping at night and screaming out in pain, but the emotional and mental strain this has been. Everett was screaming out “Stop! Stop!” In his sleep last night because he was dreaming he was being stretched.
PT said that in a week he will be tolerating it better, but by then, we will be doing surgery #2 😣
Please pray for endurance for us and that Everett can have some rest and relief.
And thank you Nicki Brackett (and Ben and Max) for this silly cat. Everett had to hold it all night long 😌

Last night was pretty rough. Everett was up every 2 hours needing to be adjusted or crying out in pain. The drain came out today and Everett’s X-ray was up on the screen 🥺 No wonder his leg hurts. The rod will stay in forever but the plates will be removed in 6-12 months.

Tomorrow is the big day!!! Surgery 1 of 2.
I’m feeling excited that we are finally here and so anxious about his recovery ❤️‍🩹
Please keep Everett in your thoughts and any prayers are much appreciated.
Everett is in the best hands possible with Dr. Feldman 💙
I’ll post updates as I get them. Surgery is at 7am, checking into the hospital at 5am. It should be about a 3-4 hour long surgery.

2 weeks from yesterday, Everett will be having his first of two leg surgeries! Can’t believe the time is almost here!
And we finally got his wheelchair today 😎
Decided not to go through the insurance because we didn’t have enough time to get a custom manual chair, so got this one instead. At least we’ll have something for Florida.

***Everett will be posting a video soon too!***

Quick facts about AMC 💙

Everett's AMC Journey updated their business hours.

Everett's AMC Journey updated their website address.

Everett finally has a page to follow him and all of his awesomeness! All of his upcoming surgeries and updates will be available here. Feel free to share his page to help spread Arthrogryposis awareness!