Today Lani/Sage completed day TWO of full day school and walking with no crutches. Actually, that's a total fib. Lani arrived late today due to the first OHSU tele appointment, but yesterday was a full school day with no crutches.

We talked to Dr. Marie Hogan and she has referred Lani to a group called Dots, Spots, and Clots (DSC). (okay, okay..... can you blame them? it's pediatric care meets clots meets heavy bleeding.... you've got to try to dress it up in some way.... right? maybe no, but they did and if it makes some 12 year old laugh, good on them.) 

A part of Lani's medical journey that I hadn't yet shared (but have since received many "yes mom, i don't care"s) is that what originally led us down the anemia path was weeks and weeks of heavy menstrual bleeding and clots from mid August to early October (it finally stopped while in hospital).

Anemia and clotting makes Lani's journey "exciting," "unique," "quite interesting," and other words you never want to hear when they're being used to describe your medical conditions. The DSC is a special collab (see how I dropped in some on trend lingo) between menstrual bleeding/gynecology and clotting disorders. Lani will be in good hands and Dr. Hogan has referred her to that team for ongoing care. 

Also exciting and new for Lani is the end of the mother loving subcutaneous burning shot from hell. Dr. Hogan wrote an Rx for a PILL and after only two phone calls to OHSU and Costco to try and fix things and then an hour wait at Costco when the notes for those calls weren't noticed and it wasn't ready for pick up (dude..... thankfully I always have an audiobook locked and loaded), Lani does NOT have to allow their mother to STAB A NEEDLE into their bruised and sore abdomen tonight!

We're hoping the switch to the oral blood thinner only eliminates the painful shots and doesn't lower the therapeutic blood thinner levels in their body. 

Not so good things is the menstrual bleeding has returned a bit. After stopping for a week, the clots and some light bleeding began returning to the stage. Bleeding while on blood thinners is not ideal. We're hoping Lani can get seen soon by DSC so some specialists can help guide things forward and maybe find some answers to what is happening.

Life at home is intense at times. I am terrified of repeating this journey, which shows up as constant reminders (I didn't say "nagging," YOU said "nagging") about drinking water, eating more (ANY) fruits and veggies, elevating the right leg, wearing compression stockings (for the love of cuss wear the GD stockings), etc. I don't prefer these conversations. I also don't prefer a return to the hospital or more clots. My realistic self reminds me that SO MANY people are advised and Rx'd to do or take things and they just don't. It's just a common thing and Lani is just another person that forgets or is annoyed by doing all the things all the time. My anxiety sends alarm bells off in my head (once more for the remaining brain cells in the back) "Wear the mother effing stockings!!" 

So there you have it. Walking is pretty normal, just some pain in Lani's right foot. Meds are stable and newly less painful. Life is beginning to return to pre emergency. The madre is nervous about it all.

I want to thank everyone again who has donated, messaged, hugged, cried with, fed, listened to, sent a gift, and helped us in any way these past weeks. The relief from small things like planning a meal or having to go to the store or cooking has immense impacts. The beaming that Lani has done while seeing all the messages, showing up, and doting, also has immense impacts. Today I completed my second full day back at work and I really feel like I've been able to return (and my brain as well) because so many things have been taken off of my plate so I could...... just be.

Things have been hard. Thanks for sitting with us in the dark.