Several sweet souls have checked in recently as we have been so silent the past few weeks.

There has simply been no bandwidth to think beyond nurturing our little family bubble, but we so appreciate your connection. 

On top of the mold sickness, I (Elle) had a stress induced nervous system collaps, got a good hit of iron deficiency, have been fighting a reoccurring eye infection (thanks CRPS) and ended up with a nasty kidney infection. Lots of throwing up, severe exhaustion, intense leg cramping and insomnia. The kidney infection went unnoticed for almost a month due to my "normal" pain levels masking what most would notice right away.

Did you know that Complex Regional Pain Syndrome is rated (by medical professionals) to be the most painful disease known? This is done using the McGill Scale and CRPS (which I have in my head/eyes) is rated 42/50. More than amputation or childbirth. 

This is why it is so difficult for me to know when something is wrong like a kidney infection. The pain doesn't line up or even register. An eye infection we can see and know to treat (but it has returned every time I've stopped antibiotics and steroids) but internal issues are kind of up to chance discovery. 

My muscles and body have become so cramped and weak from the iron deficiency that I am struggling to feel safe taking
Braven outside, so we have been staying indoors or very close to home/using a leash to keep us connected. I know that in an emergency, like him running away from me around cars (which happens regularly) my body would be too slow to respond and keep him safe. I need help caring for him.  

Braven has been doing really well with the new medication, which has reduced his Hemiplegic Migraine Attacks to about one a week! The trade off though, as meantioned in our last update, is the medication slows his heart and makes him tire very easily. So he is out of breath and asking to be carried within blocks on a walk. That has been hard to support, as he's a big kid and I have very little physical strength right now, and he hates the stroller. 

We have also been turned down by the second (and only other accessible) school option. While we were prepared to pay for private school ($38 for a 4hr day) if that was the most supportive fit, we don't have the money to hire a home caregiver ($20/$25 per hour). But also, as my body has so clearly expressed this month, we need to hire a nanny or someone for quality home care who can provide respite for my body and expert care for Braven, and help us access early education opportunities I cannot drive to.

David is. VERY. TIRED.  2 weeks ago, we had to move suddenly due to mold in the house and he's been carrying a heavy work and mental load 24/7 between Braven's health, my health, our housing, his work, not to mention recovering from his own respiratory illness due to the moldy house, etc. His days off are scheduled around getting us to drs and therapies, picking up meds and getting groceries/finishing errands I cannot drive us to, and that is exhausting. 

We have however had some amazing summer days in the midst of all of this. We have moved into an incredible neighborhood and the community is blowing our minds. The neighbors have been creating shady spots for Braven to play, we got to experience our first 4th of July living downtown and we had SO much help when we moved two weeks ago. 

We are dragging ourselves out of the house as much as we can for a bit of sun, a lot of appointments(5 drs appointments/lab visits in the past week....not counting remote connections with Seattle Children's Hospital) and trying to keep the dogs and toddler energy from going insane when all David and I want to do is curl up on the couch and sleep (thank you iron deficiency/mold recovery/kidney/eye infections). 

We have come to a clearer picture of what we need for support right now/through the end of the year barring surprises. 

Financially:

Adding this up to a goal need of $12,500 to support through the end of the year unless we can find a creative care option for myself and Braven we have not thought of.

♡ Meals, playtime/visits, dog walks and help tidying/cleaning the house are all still incredibly helpful in allowing us any little extra space to rest/recover/unpack/move out of survival mode. ♡ 

We would appreciate all the encouragement, shares and love you can send our way. Even when we are quiet or you see us out some times, things are still really really hard and we are finding ourselves masking a lot.