Well were halfway through what can easily be described as the busyiest week of the year for our family. I dont know why Novembers are like this for us but they are nuts.

This week alone was full of appointments, bloodwork, meetings, parent teacher interviews, birthday parties, dinner parties, etc... all in 7 days.

Were over a bulk of it - 1 dinner part, 1 lab visit, 1 doctors visit, 4 hours devoted to tracking down aforementioned lab results, one meeting, and 2 hours at the pharmacy down, one dinner party, one hospital appointment, one birthday party, and one parent teacher interview to go.

Tylers latest kick this week is the "Safety Violation"... he has yet to tire of informing us (and really anyone that will listen) that he is indeed a safety violation. we dont think he knows what that is but hey... its pretty accurate in our opinion.

Brandon is doing very well (knock on wood!!!), busy with school and fully enjoying a few days off this week.

Both boys are counting down the days to disney... Tyler realised today that he is going to get to see Lightning McQueen at Disney and the entire thing reached a whole new level of 'awesomeness' in his words...

I have been battling the blood pressure beast the past several weeks. Everythign has sort of culminated this week and i am now dealing with crushingly low blood pressures (75/50 sitting down and what can only be written as '0' when i stand up as neither machine or doctor was able to get any kind of reading when i was upright (and rapidly blacking out - im ok upright as long as im moving constantly but as soon as I stand still for any stretch things go south fast). The meds I am on for said blood pressure have been increased which are actually helping (yesterday I was 85/50 sitting down!! still '0' standing but the 85 was an improvement at least), but unfortunately they have a tendancy to drop ones potassium levels which is pretty dangerous, and as of this week Im already 'moderately low'... too much lower and I'll be in 'critical' territory which they dont like to see.
Its a horridly fine balancing act, and we are all tired of it.

I see cardiology on Friday to discuss the next steps - they will be starting me on a new medication that has been shown to help, as well as preparing to trial IVIG as they (and several other doctors) feel strongly that I have an autoimmune neuropathy at the root of all this. Were all hopeful this might be our answer as the IVIG has the potential to 'fix' me... but were trying not to get too excited at the prospect.

Onward and Upwards.

At this moment, today, we're all doing alright, and we'll take it.


  1. Keely, love all the pictures! Halloween looked liked fun for all your boys. Although Im not sure Tyler looked thrilled wearing the Eeyore costume! BUT Brandon always looks happy in his fireman hat!

    Sorry to hear about your low blood pressures, sounds awful. We deal with this for our daughter but for a completely different reason, still scary when she blacks-out. I really hope the new medication and possibly the IVIG therapy helps. Sounds like youve been very busy, it will be nice to have a few days off too.

    Im excited for the boys and their Disney World trip, I bet they just cant wait! I still havent done anything about Jacks MAW trip, its a hard one for me to think about I guess but know I probably shouldnt put it off forever.

    I hope you all have a wonderful Holiday, hugs and prayers- Heidi and Jack.


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