It has been exactly a month since my last entry so a lot has happened but I am going to try to keep this somewhat brief. First off, I am now 6 months post op from my spinal fusion surgery which is the halfway point to getting the metal taken out! I (Alex and I both) are definitely eager for surgery day to get here. We have so much going on in our family right now I don’t even know where to begin with these updates. I want to think that all of this is for some bigger purpose - maybe we will know one day and maybe not. But we just can not seem to catch a break and we definitely appreciate the prayers and encouragement we have been receiving along the way.
So I guess I’ll start with an update on me. Just recently I have started to notice an improvement in the my Lupus flares since starting an additional medication for it in January - it always takes these meds a few months to see if they will help or not. I still feel pretty awful most of the time compared to my “normal” but it is manageable so I will take it! The quantity of sleep I have been getting each night has also improved overall now that we have my pain under control. The past three nights have not been very good because of a current flare but I am hoping that it’ll improve soon on its own (without a run of steroids). Lack of sleep has been a major trigger for my seizures so it has been a top priority to sleep when I can.
Speaking of seizure activity, I had an appointment with my Neurologist a few weeks ago. I was hoping to get the all clear to start driving some since all of my recent seizures have happened while I was asleep in the middle of the night but I left that appointment very heartbroken. It’s my fault for getting my hopes up and I’m ok now, just needed time to process it. As of right now I do not have driving privileges until September 7th. If I have another seizure the 6 month “clock” will restart. My first one happened on September 3, 2023 so that’ll make it at least a full year. It is definitely inconvenient but has been very helpful to have a driving teenager. I also found out that day that not only do I have deficits in my left leg reflexes but also in all of the reflexes of my left arm so I was a bit surprised when I found that out. I really haven’t noticed anything being off with my arm though so I’m not going to stress over it.
I also gave in and went to the Orthotic Clinic to be fitted for an AFO that was ordered for me back in December. I was stubborn and kept telling myself that my foot drop would go away but it has not. I finally got tired of tripping. Let me just admit that I wish I had not been so stubborn! It is a bit clunky and definitely not cute but I can walk much more safely now and for much longer distances. Game changer! Will I learn my lesson about being stubborn? I’d like to say yes but even I know that wouldn’t be the full truth. But I am trying!
Next we have Aidan. Not much to update there though. Right now he’s my “boring” child which is a good thing lol. He’s doing great in school and at work and has been a huge help with taking us to appointments when needed and picking up groceries. I’m so thankful for him!
Colin. Oh boy, where to start. He has had migraines since he was a toddler but they were manageable and typically only once a month on average. Same routine every time - starts up with the migraine and dizziness, he throws up at least once and then sleeps it off with an ice pack in a dark room after we treat him. Not this past month though. His recent migraines are taking days to resolve and cause him to throw up multiple times in a row. He missed at least half of the school days in April because of this. We have tried many natural methods as well as prescriptions. Next week he has a brain MRI to make sure there are no physical causes and we have Neurology appointment set for him in July.
Next we have Skye. She had a minor surgical procedure last week that thankfully ruled out Sjogrens Disease for now but we are still awaiting some other tests to check for Crohn’s and IBD. She still could develop Sjogrens or other autoimmune diseases over time so she will be closely followed by several different specialists but hopefully will not. JIA and Ehlers Danlos are plenty in my opinion!
She has officially been diagnosed with Juvenile Idiopathic Arthritis (Enthesitis-Related Arthritis is her specific subtype). She has some significant damage in her left ankle but thankfully we caught it before it made its way to her bones so the damage seen on her MRI should be reversible with treatment. Yesterday we had an appointment with her Rheumatologist to discuss treatment options and we will pick those meds up and start them today. Please pray that her side effects are not too bad and that she will start to experience some relief! She will be on a steroid taper for a while to help with her inflammation/pain and she is also starting Methotrexate which is a Chemotherapy drug (low doses are typically a first line of defense for JIA and many other autoimmune conditions. I am on this for my Lupus as well). We will not know for about 4 months if the Methotrexate is working or not.
While this is a lot to take in and process, it is also not a big surprise as this is what her symptoms have been pointing to for a while. It just takes time to develop enough in kids to be seen on imaging. Referring back to my earlier statement, maybe being diagnosed with Lupus and being placed on these same medications myself is all part of a bigger purpose for such a time as this. It would be much more scary to find out my baby is being placed on these medications if I did not have the knowledge and experience with them that I do. It is still scary of course and the side effects can be rough but we at least feel as prepared as we can be moving on to these next steps with her.
Only one left is Alex! Not much to say except that, as always, he is our rock. Somehow he is able to not only keep up with the craziness of our life, his full time job, the house, and helping others when asked but he does it with more patience than I have ever seen in a human being. And he also manages to keep us laughing through it all.
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