As many of you know I have  had to take a medical leave at work the last month for some of my own health issues right now related to a mast cell condition I have had the last four years.  It flared in a way it has not before, after a rare complication from a sinus infection leaving me with nerve pain and some other neurological issues that seem to be improving slowly!  While my condition is vastly different than June's, it is also invisible.  Many days, I wish it away, I am also trying to see the beauty or silver linings in this situation,  or gods hand at work.  We've been able to nap and restore together, I see her struggles in a whole new light.  I applaud her efforts to stay positive, to laugh and just wanting to keep things as "normal" as possible when sometimes, they just aren't.  It has been nothing short of eye opening to relate in this way to my daughter while she is on her own roller coaster.  Many days we are figuring it out together, and it has been very humbling.    After accumulating several rare diagnosis within the Kenoe clan the last 6 years,  we have all learned a lot about how amazing medicine is, but also how little is known about some of the more rare (and not so rare disorders).  I will likely never have an answer for at least half of my medical questions, but with the love of our friends, family and community that is okay I am learning.  Hugs, meals, visits and reassurance and humor can mend most things... I see it every day with June.  To those who have just stepped up and been there for a walk to make me laugh, a park play date for June, a prayer, a silly meme, they have all meant so much.  Thank you from the bottom of our hearts for this type of unconditional support, I hope to return one day soon.  

Back to June- she had a procedure last week to drain her right knee... that very stubborn right knee.  It has flared more times than I can count.  After they took of a couple ounces of bright yellow fluid (this is the color we hope for when it comes out, as it means it is NOT infected and healthy fluid), they injected the joint with Kenalog, a steroid.  June reacts very poorly to Kenalog, but luckily the majority of the side effects wear off in 4-5 days so we are seeing our girl shine again!  Steroids typically make people jittery, fast heart rate and cranky.  June is quite the opposite (shocker) and becomes very lethargic, naps often and very quiet.  The procedure did the job quickly and you would never know looking at her knee.   She is more herself today thankfully!  

They did find four other joints in the left foot that are also full of fluid near a growth plate.  They are not hurting her and they are mild, so we are monitoring for now.  If it remains there in a month, we will need to inject those under anesthesia because it's a more sensitive area.  We start a new drug called Simponi, and luckily these will be given via injections at home so we get a break from infusions for a bit.  It has just been approved by insurance and will start next week.  

June's brain condition is stable right now and will be getting an MRI at the end of summer to check on the syrinx (the fluid filled cyst in her spinal cord)- we are currently in a surveillance period.  She complains her back hurts, headaches and occasional nosebleeds, but does not keep her from doing her daily activities.  When it does, that will be the time surgery is warranted according to our neurosurgeon.  The same MRI will check on her jaw joint.  Praying these remain stable.  

Looking forward to seeing many of you at June's medical benefit May 16th- Jam for June bug... I won't get started on how amazing , uplifting and distracting (in a good way)  this experience has been.  I will save this for a different post.  Thank you to all who have participated, it has been a miracle. 

Much Love,

Katie