Hi everyone! Hope that you have had a wonderful two weeks. We have been enjoying some wonderful sunshine here the last few days that has just brightened spirits all around considering we had quite the start to our week. On Saturday, Ethan noticed a hard lump in Ollie’s cheek that was quite painful to the touch. By Monday, we noticed it had gotten larger and more painful. No redness or heat like an infection but more like a spontaneous bleed similar to what he had about 6 months ago. So we called his specialist and were able to get an appointment on Tuesday afternoon.
Now the struggle for all of Ollie’s appointments is that he doesn’t really have a specialist. His doctor that had experience in lymphatic and vascular malformations, moved over two years ago. That just means that when we go, we are talking with doctors who specialize in childhood cancers, and generally differ to our judgement. After a few minutes of being in the appointment they were able to listen to our concerns and get the ball rolling. Within a few minutes they had scheduled him an ultrasound downstairs and had called his surgeon who has done all of his sclerotherapy rounds. From what the report says, it looks like what we expected, a spontaneous bleed into one of his macrocysts. We don’t know why this happens but it is something that he will have to have taken care of in the next week or so. His doctors are concerned with the pattern of it though, happening six months apart. If it does happen again, they will try to send his case out to the Children’s Hospital of Philadelphia (CHOP). This is where his last specialist went as well as the specialist that we saw in Boston moved there as well.
As we chatted with our families about Ollie’s upcoming procedure, we were reminded that we need to keep people more updated on his condition. Many have assumed that with Ollie’s surgery in Boston that he wouldn’t need anything for a very long time and that is true to an extent. Honestly, there are so many unknowns about his condition that we don’t really know. We take it one step at a time and that really sucks. Lumps and bumps appear seemingly out of nowhere and they need to be addressed. So at least we are not dealing with an infection with antibiotics but he still is put under for these procedures. We will keep you updated on when that will be happening but at least it can be taken care of here at Helen Devos and should be an outpatient procedure.
Declan also went to the doctor this week with what we thought was a build up of wax in one of his ears. He had been complaining on and off for a few months of ear pain. After a couple of calls and many treatments of olive oil to the ears, they deemed it was not wax build up but TMJ pain. The temporomandibular joint is like a hinge that connects your jaw bone to your skull. Where is it? Right by your ears. He most likely has this pain due to grinding his teeth and clenching his jaw at night. Now hopefully it will go away on it’s own as he grows but we are going to talk to our dentist about maybe getting him a bite guard or something to wear at night. So many medical adventures this week!
Phew! Now that all of our medical updates are out there, I wanted to chat about another Michigander that is inspiring others to get outside! A few months back, I came across an Instagram account called 1000 Hours Outside. Ginny is the founder of this movement to get kids as well as adults back into nature every day. The goal is to spend 1000 hours outside in the whole year of 2021. Now this doesn’t always need to be going to parks or beaches but just having them explore in your yard or bringing certain activities that usually get done inside, out, like meals or book time. Obviously for us living in colder places during the winter time, this can be more difficult but that just means we can be a little more creative!
The boys and I have loved being more intentional about our time outside. If they are not out for at least an hour, I feel like they they destroy my house and tensions are just high. But time spent outside is like hitting the reset button on our day. There are no boundaries for loud voices or how messy we can get, it is just time to simply play and enjoy the fresh air. There are so many parks in our area with some pretty cool play structures. But sometimes throwing rocks in frozen ponds or climbing fallen trees are the best play areas!
So get outside this week, enjoy the beautiful sunshine or walk in the rain. Where ever you are, be more intentional with your time and adventures! If you are interested in keeping track of your time spent outside, Ginny has some super cool trackers on her website that make it fun! 1000hoursoutside.com
Have a wonderful two weeks! If you do venture out into nature this week, send me a picture! I would love to see what crazy shenanigans you are getting into!