We came home last night for the first time since Christmas Eve which is really nice. The kids are loving having their toys to play with! This morning I had an early physical for myself because I had put that off for far too long as I was about to be totally out of refills for my own meds which can't happen without some big consequences. I stink at making appointments for myself!
At the end of my appointment I needed a lab work done. Lydia kept asking me if they were going to hurt me and insisted on sitting on my lap so she could hold my hand. Jilli sang me a hospital song during it. It was so sweet having them comfort me during a poke like I comfort them.
We ran to Target after because we have not been home for 3 weeks so pretty much anything in the fridge needs to be thrown out.
While we were at Target I got a call from the GI procedure scheduler that they have a testing day for us... over the same time as NIH last year. At minimum they will be doing an EGD, placing a throat motility probe, doing a swallow study and throat motility testing.
To say I am scared is putting it lightly. I feel like I am signing off giving them permission to put liquids in my kid's lungs. I feel like they are not sure what to do so we just keep doing the same things over and over. I feel like I don't have a lot of choices.
I have been thinking for a while about what we were going to do this year over the time we were at NIH last year. I am proud of how far we have come this year, it has been a lot of work for all of us. At the same time NIH is still a wound, one that got picked back open last week in our appointments, one that we are working towards healing for but we also need to admit that its going to take time. I also just wanted something to mark this year as different...
This is not what I was looking for! Until today we had no appointments in February and now we just booked a hospital stay.
I am trying to hold space that even though this is not what I wanted or imagined for the one year anniversary of NIH, that maybe there will be healing in me in this.
So can you join us for prayer in some things around this:
-We would like ear tube surgery to happen at the same time as the other testing along with an airway scope to check out a spot that has been of interest in the past. We need ENT to agree to this AND for it to work out.
-Pray that this shows something. We know from day to day living with Jillian that there are symptoms going on... we need to prove that (again) with this testing so we can best help Jillian.
-For our team to not just get frustrated. They can't explain a ton of things and I completely understand what that feels like but sometimes it starts to feel like when they can't explain something they just start questioning everything or they just get frustrated. I have had to learn over the last 7 years that its ok to not know everything... that doesn't mean that it isn't frustrating or that we just give up, but I need practical, just because we can't explain some things doesn't mean they don't happen and it doesn't help my kids when we get stuck in that mindset.
-Pray that this testing helps us heal from the testing at NIH.
-Pray that we are listened to and respected as part of the team.
-Pray that everyone works well together
-Pray for logistics because viral restrictions will likely still be in place at the hospital during this time. That will mean we will need arrangements for Lydia during all of this.
-Pray that Jillian doesn't pick up any illnesses while in the hospital
-For Jillian as she often with testing these days is just over it. Most parts of our lives just are what they are... testing is hard because it is often asking a lot from her both physically and mentally.
-For Brent and I. Honestly today I just want to cry. Today this all feels like a lot.
In other news, I was able to get urology scheduled for next week and palliative is trying to get us in too so we can get a bunch knocked out next week. Today we are going to take a kind rest of the day. The kids are going to play with their toys and Jilli needs to do school. I bought a freezer pizza for dinner so I don't have to worry about that and I will try to work on unpacking from the last 3 weeks so I can pack for next week... but we are going to try to take it slow and kind.
This testing that we are talking about in this post is the scheduled testing... this is only round one for now... round two will happen during Jillian's next big crash so we are not able to schedule that, it will all just have to happen when we end up in the emergency room next. Also they told us yesterday that the neuro stim is booking into March so that will be a little while yet.
 |
| Lydia playing Spot It |
 |
| Doing Yoga |
 |
| This is what Jillian's legs looked like the morning of infusion. No one knows why this happens. These spots are like an external sign of how the inside is doing. The come rather suddenly and go with Jillian's crash events and are weird! |
 |
| Infusion party! |
 |
| Why sit on the chair when you could sit on oxygen *eye roll* |
 |
| Lydia hugging her couch. She kept saying while we were gone that she missed her couch |
No comments:
Post a Comment