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.
Friday, March 6, 2020
Sunday, March 1, 2020
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.
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.
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