Coming home

This is waaaay overdue.

 We’re in the airport in LA waiting for our flight (that is delayed) so I’ll try to do a quick catch up.

Monday was Genevieve’s last treatment. It was much like the others. The final consensus was hardware pain. I spent the afternoon and evening filling out the FAFSA form which took forever, and making arrangement to visit GCU in Phoenix in the way home.

Tuesday morning we packed up our room at the Ronald McDonald House. I have to say again how amazing it was to be able to stay there. Every night of the week volunteers came in and cooked dinners. They also had an industrial coffee machine that makes mocha chunks and macchiatos, and lots of snacks as well. The staff and volunteers were so caring and welcoming. We took a bumpy flight to Dallas, had a couple hour layover and then a really bumpy flight to Phoenix. We Uber’d to the GCU hotel and were not very impressed with the surrounding (which we expected, but still). The next morning we took the shuttle to campus for the tour. We again saw more of the surrounding area and I pretty much wrote off GCU as a possibility. Then we got on campus and everything changed. The tour was great and Genevieve fell in love with it. I’m not going to spend a lot of time with the details, but reach out if you want to know more.  It was a pleasant surprise. The tour was mostly golf cart with a little walking. We came back and rested because Genevieve was pretty sore, then went back onto campus to see it at night. We walked just a little more and then Genevieve was physically done. She was happy with seeing the school but was paying for it 😥.

Thursday morning we caught a flight to Santa Ana so we could tour Vanguard University. We went to pick up the rental car but hit a roadblock. I had my wallet stolen last summer and still had not gone in to get a replacement drivers license. Going to the DMV is easy to keep putting off. I have carried around my expired DL for all ID purposes and kind of forgot about it. Guess where an expired IF won’t work? Ugh. No rental car. So I decided to get a car using the Turo app (private car rentals that’s like an AirBnB for cars). You have to submit a photo of your drivers license which I luckily had on my phone (Avis/Enterprise/Dollar would not accept). We Uber’d to the Turo car and then drove to Vanguard. Met with an admission counselor and got the tour. Nice really small school but Genevieve I could tell that it was not a contender for Genevieve  after GCU. We left there at 4:15 and drove straight to the local DMV to get a new DL. I was in and out of there in 10 minutes. It was a DMV world record!  We went to a hotel for the night.

Friday morning we packed up and drove to pick up a rental car from Budget because I needed a one way rental that I would either leave at LAX or drive back to the Bay Area depending on whether Genevieve was going to get surgery next week. We picked up the rental, then went and dropped off the Turo, then finally got on the road for Beverly Hills (where Genevieve’s arrogant foot surgeon is located when he’s not in NY).

I’m actually not in the mood to write about the appointment. Let’s just say the first half of the appointment we were planning on surgery to remove the hardware next week, and then he did a 180 and said he would not do the surgery until she after her 18th birthday (July). There is so much to fill in but I’m too frustrated to write it out. Maybe tomorrow or this weekend. We are now at the airport waiting for our flight. I’m so ready to be home, but also sad and discouraged that we don’t have a plan in place to get Genevieve pain free in the near future.

So here we are.

Overdue update

Sorry for the lack of posts.

Thursday Genevieve had her treatment and we feel we got some clarity. The nurse Shayla spent some extra time with us talking through things. Genevieve is experiencing less pain overall. The treatments are taking away all pain except where the hardware is (and maybe a little tendinitis). Sometimes people get hardware removed but only after giving it sufficient time to settle down which could be a whole year from now. The frustrating part is that this pain could be triggering the neuropathic pain. We are going to continue the last few treatments and see if we can't get the neuropathic pain to stay away longer (we think she got about (5 hours today), and I am going to contact her foot surgeon to discuss the other pain and see if he has any solutions on how to settle it down.
I feel peace that her overall pain is at a much lower level than before she started scrambler therapy 10 days ago. The question is do we stick this out increasing at such a slow pace (8 days = 5 hours so far) even though we still need to deal with the other pain...🤷🏼‍♀️

After treatment we went to take an official tour at FGCU. What a beautiful campus (if you don’t mind sharing it with alligators. There was an 🐊 sunning itself by the welcome center when we arrived 😳.) The tour was about 2 hours long, on and off a shuttle with walking in between. Genevieve did really well but was very sore later. However, 2 weeks ago she would not have been able to do that. That was a good reminder how much progress she has made.
Unfortunately she paid for days with pain and swelling.

Friday she had her treatment and then we did a little shopping (the weather hasn’t been very warm and we are beyond bored) but unfortunately G was still in a lot of pain from all the walking she did on Thursday do we had to cut it short. I spoke to her foot surgeon (it’s nice to have his cell #) about where we were at with G’s progress and wanted to talk to him about the hardware pain. I assumed he would tell us we needed to give it another 6 months to a year to allow it to settle down, but to my surprise he said it could come out now, especially because it could be effecting her CRPS. We are going to see him next Friday so he can examine her and devise a plan.

The weekend- still pretty sore, but we went to the movies and saw Little Women. We went baby clothes shopping for some parents who are living her at the Ronald McDonald House with us. Their baby was born weighing 1.9 lbs and has been in the NICU for 2 months. He just reached 5 lbs. It has been a good opportunity for Genevieve and I to practice our Spanish. The dad speaks pretty good English but the mom doesn’t speak any.  They asked why we were there. Genevieve wasn’t there and I tried explaining her condition in Spanglish, but considering it’s hard to explain in English I’m pretty sure they had no idea what I was trying to say.

Today I spoke with Genevieve’s foot surgeon again. I wanted to get an idea of his availability since he works on the east coast part time and west coast part time. There is the possibility that Genevieve could have surgery as early as next Monday, a week from tomorrow.
As much as we want to keep moving forward, the prospect of another surgery is terrifying. It’s pretty much the worst thing for people with CRPS. We would be happy to wait and see if the hardware pain goes away on its own  if we didn’t think it was aggravating her CRPS and hindering remission.
Her surgeon is going to reach out to Genevieve’s pain specialist tomorrow about formulating a plan since special precautions need to take place with her situation. I definitely don’t want to make any rash decisions. If we are unsure about doing this surgery then we won’t do it in a week and we will take more time to consider it.

Continuing to pray for clarity and HEALING 🙏🏻

I’m ready to be home but one thing I am loving are the beautiful sunsets.

Trust

Letting go of every single dream
I lay each one down at Your feet
Every moment of my wandering
Never changes what You see
I try to win this war
I confess, my hands are weary, I need Your rest
Mighty warrior, king of the fight
No matter what I face You're by my side

When You don't move the mountains
I'm needing You to move
When You don't part the waters
I wish I could walk through
When You don't give the answers
As I cry out to You
I will trust, I will trust, I will trust in You

Truth is, You know what tomorrow brings
There's not a day ahead You have not seen
So let all things be my life and breath
I want what You want Lord and nothing less

When You don't move the mountains
I'm needing You to move
When You don't part the waters
I wish I could walk through
When You don't give the answers
As I cry out to You
I will trust, I will trust, I will trust in You
I will trust in You

You are my strength and comfort
You are my steady hand
You are my firm foudation
The rock on which I stand
Your ways are always higher
Your plans are always good
There's not a place where I'll go
You've not already stood

When You don't move the mountains
I'm needing You to move
When You don't part the waters
I wish I could walk through
When You don't give the answers
As I cry out to You
I will trust, I will trust, I will trust in You
I will trust in You
I will trust in You
I will trust in You

Day 7 of Scrambler

Another day of treatment. Genevieve wasn’t feeling the sensations from the machines as much today so they switched her from the pediatric leads to the adults leads which helped.

At the end of the treatment G said that she was probably the most pain free she has been since starting, but her ankle pain (that we assume is from hardware) comes back quickly. The effects of the treatment lasted somewhere between 3-4 hours. Genevieve is not the typical CRPS patient who goes from zero pain to pain and can pinpoint the exact time the effects of the treatment wears off. She goes from less pain to more pain, and the pains are different so it’s just not black and white. While it has been frustrating that she doesn’t seem to be gaining a lot of time with each treatment, she says that her base level pain is less than before she started the Scrambler treatments...so I need to focus on that. It’s not necessarily going how I expected and hoped it would, but we are seeing gains.

After the treatment we drove to some springs that we had heard about. The first place had just been drained so we drove to the next place right next door. It was like a throw back in time. It was this funny little “resort” of pyramid homes surrounding a natural spring lake.

I think it was private and we couldn’t find an office to ask about a day pass. We considered going in anyway but we felt the water and it wasn’t warm. Sad day. I can’t believe I can’t find a warm therapy pool here in Florida. At our pool at the gym at home the therapy pool is where the older people go. I would think it would be very popular here.

At this point I think we are going to finish out the 10 treatments then come home. The last one will be on Monday.

Day 6 of Scrambler - feeling discouraged

Today has been discouraging.
Last night when I was massaging Genevieve’s feet (with the epsom salt lotion) I could tell the inflammation was so much better. It was the first time her foot felt really normal in comparison to her other foot. It has less muscle and feels slightly smaller, but finally it was feeling normal. I’m not sure what it was like this morning before scrambler therapy, but she did wake up with slightly swollen face. That happens sometimes and we haven’t been able to figure out why.
Scrambler therapy today was fairly normal. She mentioned again that the effect wasn’t the same as Friday. She also experienced some more heel pain. The doctor thinks it could be a bit of tendinitis from not using the foot much since surgery. He wanted her to take it easy today (no PT). The problem is that tendinitis needs rest and to not push through the pain. With CRPS the foot needs use. She came back to the house and did an epsom salt soak and has been elevating it. We noticed her foot is showing inflammation again and is going up her ankle. You can actually feel a line where the inflammation starts and stops. G marked it with a sharpie so we can see if it spreads any higher. We’re confused. We don’t know what is going on with her body.

Day 5 of Scrambler- just eh

Genevieve says her pain level hasn’t fully returned to what it was before Friday but today she was moving like it has. She had Hydrotherapy at PT and it went well. When she got out she said her foot felt a little looser. We got lunch and just waited around a bit until her Calmare treatment. It went similar to all the treatments. When we left she wasn’t pain-free though. She had her standard outside ankle pain near her hardware, and she was also experiencing some heel pain ☹️. She thought maybe it was  aggravated from the exercises during PT.

We went to Bonita Springs Beach after and got some vitamin D. It was really windy and G wasn’t in the best mood so we came home. She thinks the effects of the treatment wore off some time between 2-3 hours later so it’s hard to tell if she gained any time today. If she did it wasn’t significant. She wasn’t able to walk by pushing off the ball of her foot without a lot of pain so I think she was disappointed. So today didn’t feel very successful which was a let down after Friday.

Praying for big gains tomorrow. 

*Reminder- Genevieve does not know about this blog right now. Someday she will, but for now I want to help her focus on healing and positive things.

Sunday

We went for a drive today to Fort Myers Beach. We may have ended up in Estero, not really sure. The traffic was pretty insane trying to get there and parking was a chore. Walking on the sand is hard on G’s ankle/foot so we didn’t wander, just made a bee line toward the water and claimed a spot in the sand.

It was nice but wasn’t especially warm. We got to see dolphins right in front of us which was a treat.

We stayed for a couple hours then got back on the road.

Overall it was a low pain day. She feels like her pain level has not gone all the way back down to her baseline.


*Reminder- Genevieve does not know about this blog right now. Please help me keep it that way.