SAY YES TO THE VENOGRAM

last wednesday, we got the news we didn't want. parker needs to continue with IV treatment. it's disappointing news and not what we had hoped for but we are not surprised. parker is understandably upset. he is fed up with taking pills and dealing with IVs. it's safe to say he's hit the wall. he has treatment fatigue and is battle weary. he has also spent the last 4 weeks having mentally arrived at the end of IV. he knew that it was a possibility that he could have his PICC pulled and be done with IV. he is having a very difficult time coping with the knowledge that he now must continue IV...and most likely get a PORT to boot.


since IV treatment needs to continue, we naturally assumed that we would need to rapidly move forward with getting parker's PICC replaced with a PORT.   we immediately began trouble shooting where in the USA we could have it done and then how best to make arrangements for that to happen in a timely and the most cost effective way. 


first order of business was to touch base with the surgical team that put in parker's last PICC. (the ones that discovered his collateral veins. based on his vascular issues, they did not think his PICC would be viable for more than a few months and recommended that his new PICC not be left in long term.) we wanted to know if we could have parker's PORT surgery done at their clinic or if they could recommend a surgeon that could. additionally, i was concerned that the collateral veins and subclavian occlusion could potentially complicate a PORT surgery.


i was put thru to the vascular nurse who assisted with parker's PICC surgery. she clearly remembered him...who can forget the ORDEAL that poor kid went thru. she definitely confirmed that parker's collateral/subclavian occlusion could potentially complicate a PORT surgery. for this reason, his PORT surgery should be done in a hospital setting.


in passing, i remarked at what a shame it was to have to lose this PICC - especially since, aside from the few issues we had with it in the first 6 weeks,  we'd had absolutely no problems with for the past 2 months.


"hold up," she said, "no problems?"
"nope. no more blood clots. no more lymph drainage. aspirates perfectly. runs no problemo"
she then surprised me by saying that his PICC might actually be fine to leave in ...but that we absolutely must get a venogram done. (a vein study) if a vegnogram revealed that his vascular issues were not worsening then it was actually advisable to keep the PICC in - and it could even be viable for another 4-6 months.


in fact, she went on to say that if his veins were holding steady with the existing PICC, that it could potentially be more damaging to his vascular system to pull the PICC and put in a PORT. especially, since the occluded subclavian vein means (most likely) a PORT would need to be accessed thru his jugular. 


ok. wow.
had't crossed our minds that the PICC he has could actually be safely kept in longer.


now, the challenge is to get a venogram done. again, this needs to be done in a hospital setting as parker reacts to contrast dyes. (a complication due to his mast cell disorder). obviously, it would be ideal to have that done here in canada. duh. if only it were that easy. this is a simple and common procedure. of course, all things pediatric go thru the children's hospital in our area. and well, we're all aware that help or assistance has not been forth coming from any doctors there. they have made it implicitly clear that, "as an entity they do not believe in the existence of chronic LD." - apparently stating something does not exist absolves them of any responsibility in managing or providing care either for the disease or anything treatment related. after all, how can you provide care for treatment associated with a disease that does not exist? 


however, the IV team of nurses at that hospital have been wonderfully supportive -  unfortunately, they can't provide any sort of care without a doctor's orders. regardless, i put in a call to them anyway. i updated the IV nurse on the situation. she was in complete agreement with the recommendations made by the american vascular nurse; that a venogram should be done and that keeping in the existing PICC was an option. she also stated that requesting a venogram (here in canada) was a completely reasonable request.


of course the challenge is scaling the enormous wall of denial in order to get a venogram done here. the IV nurse was hopeful she'd be able to find a doc to help. she said she'd try her hardest. 


she got a big fat NO at every turn.

we have one last option left to try and obtain the venogram here in canada. we will be pursuing this avenue this coming wednesday. if we get another big fat no then we will journey to the USA. again. 


we remain hopeful that some doc will say yes to the venogram.


whatever the outcome, we are resting in the knowledge that we can trust God to chart our path

SORE FINGERS

so, parker broke his finger on the weekend.

i tried to suppress the urge to cheer.
yippee!
nice mom i am.
i'm not happy he broke his finger
but really, a broken finger is a sign that he is able to do some normal kid stuff
and THAT we are happy about that.


there is no big dramatic back story to go with how the finger was broken
he jammed it playing basketball.
it's a big deal that he was playing, yes, but other than that, no big drama.
end of story.


HOWEVER
i am legendary for being acutely dismissive of broken bones in our house.
partly because i am reticent to go to the ER...i hate sitting in ERs. hate it. but in my defense, my kids don't react in the way someone with a broken bone should (or how i think they would or should) so how am i to know?
like the time avery broke her leg.


she was 2. we were at science world. her and parker went down that wood slide they have there (it should be burned, it is so dangerous). the short of it? she got stuck. paker did not. he was right behind her. we heard a little crack, she cried hard for 5 minutes. and then seemed fine. she wouldn't walk or put any weight on her leg but she was happy.
graham thought we should have it looked at


"she's fine. she'll be fine. she's happy, it's probably just a sprain." i confidently asserted.


and besides, "if we take her to the ER, we are gonna sit there for hours only to be told it is a sprain and to go home and ice it and give her advil." 
no thanks!


so we went out for dinner.
i know, right!
and
then when she still wasn't putting weight on it several hours later, graham convinced me we should just get it checked out.


by that time it was evening.
ahhh, what a bother.
off we went with our non-walking but very happy toddler in tow
arrived at the ER
and
waited
and
waited
and
waited.
3 hours.
naturally.
avery happily played the entire time.
surely, if her leg was broken she'd be screaming or at least crying.
harumph.
i had enough.
"we're going." i said in exasperation. "this is ridiculous. she's fine."
we got called in, just as we were preparing to leave
sigh.
i nearly said forget it but after waiting all this time figured we might as well be seen.

sure enough.
an xray revealed full tibia fracture.
oops. sorry 'bout that.



taylor, who played very competitive basketball all thru high school, 
broke nearly every finger
and
his nose
twice
and
he likes to remind me whenever possible how i ignored his broken bones
nice.
again, such a sympathetic mom.

but hey, in my defense, i didn't think one could break something but still continue to play. yet he often did.
how was i to know they were broken.
i always thought they were sprains.

and
i hate sitting in ERs.
so boring. so long. and all for what? for an xray and a doctor saying, 'it's just a sprain. ice it and take some ibuprofen.'
i could've told you that - minus the 3 hour wait
and
even if it is a break, a finger they splint and then send you home with the same advice.

so, when at the end of a basketball game, taylor would say he had a sore finger(s)
i believed him but didn't think they were broken
after all, he'd just played the entire game
"i play thru the pain" he would say
and i'd reply
"i'm so proud of you! here's some ice and an ibuprofen. i'm sure your finger will be fine."
but
the finger(s) would keep hurting.
eventually, i'd take him to the doctor
and
sure enough, 3 or 5 or 7 days after the fact, we'd learn that the sore fingers the poor kid had been walking around with were really broken.

oops. sorry 'bout that.
he's never let me live it down
nor forget.


so on friday, when parker started complaining that his finger was really sore, i only made him wait one whole day. i know, right? old habits die hard.


ha ha.


and of course, the sore fingers thing applies to me too. it's a story i don't let graham forget!


way back in 2007 i was just a few months into treatment... on mepron and zith for babs. treatment that provokes some of the most terrible, horrible herxes ever. i was sick. sick. sick. sick. i thought i was dying. i felt like i was dying. i wanted to die.

as i had started my decent into herxing hell, i had sent out a "desperation" email to a support contact i found on the canadian lyme disease foundation website. the response i got had been a saving grace as i plummeted further into the unimaginable, indescribable world of herxing - to know someone else had been thru it, to know that this insanity was "normal", to know that i was not alone, kept me surviving. it meant so much. by the time the email had come, i was so wracked with pain and dealing with psychiatric symptoms of OCD episodes, unrelenting panic attacks that would go on for 3 hours at a time and suicidal ideation. i was hallucinating and my cognitive function would deteriorate. i would lapse into episodes where i had no idea who i was or where i was, then there were the fevers, chills, sweats, the tremors, vomiting, arrythmias, and the pain. always the pain. pain that makes your teeth rattle. the kind of pain so intense, that even just a bed sheet draped  over my body, was too much weight and only intensified my pain.


there were many times over those days, where graham tried to convince me to let him take me to the ER. i would have none of it. i was surely beyond help, so i'd rather die in the comfort of my own home.


yes, i was in rather horrendous shape. 
but i wanted this person to know that their email had meant so much. in a moment of lucidity, i whispered to graham to pls email them and let them know that i had gotten even worse but thank you so much for their response.


it took a week before i was well enough to manage a few minutes at the computer.
and
then i saw it, graham's reply


"this is graham. shannon's fingers are too sore to type, but she wanted you to know how much she appreciated your email."


my inability to communicate was chalked up to sore fingers?
you have got to be kidding me? we still laugh at that.


the moral of the story?
sore fingers aren't always what they appear to be.

SHAN'S RECOVERY M.U.D.

here's the latest M.edical U.pD.ate on me and the outcome of my appointment with DR H on friday.


i am still off of all ABX. whoop! whoop! 5 months now. 


i am still on a treatment regime. i am on meds to control my mast cell issues. and for the past 2 months, the primary focus has been detoxing my body and bringing down my viral load. we've managed my viral load quite successfully with a host of natural remedies. mono-lauricidin. immunvira. oregano oil. to name a few. and eek! even colloidal silver. it took some convincing on DR H's part to get me to try that one. the whole blue man myth had me a little nervous...all i need after all i've been thru, is to come out on the other side of this looking like a smurf. 

i am doing pretty darn good - as long as i avoid all fruits and vegetables (yes, that is still a major issue), and i have to be vigilant about getting in strategically scheduled rest periods between activities. i still have days where i am flat on my back in bed...that usually being the result of me overdoing it. my bad days are no longer the horror they once were. PTL! some days it is still a struggle to accomplish a series of tasks. however, that pales in comparison to the many incredible feats that i have been able to do. 


ability is an absolute gift to experience.


 the whole learning to pace myself and taking it easy even when i feel well enough to keep going and do more is hard. i feel bad to not do if i know that i could. i feel guilty just sitting or resting and "taking it easy". it's a weird place to be in...but i'll gratefully reside in it. yes, i'm getting re-acquainted with the "old me" and i am discovering how this "new me" interacts and functions in the world. bridging the gap between the two is a challenge, yes, but i'm sure having a whole lot of fun doing it...and what a delight it is.


cherished moments. hilarious moments. tender moments. triumphant moments. difficult moments. every moment is a precious gift. yes, in a strange way, even the difficult moments are.

being free of crippling pain means dressing up and wearing heels. being able to wear my wedding rings. making my bed. making dinner. vacuuming. brushing my daughter's hair...and dyeing mine and even wearing silly hats...

went to a high tea and we all got to make our own "fascinator"

um, yeah, harrison insisted on making one too

being free of crippling pain means holding hands. giving hugs. being hugged. it means receiving great big squishy hugs and not cringing and wincing. never underestimate the power of touch... and never take it for granted.

being free of crippling pain means planning to go somewhere and actually getting there. it means saying, "yes, i can"...and then being able to follow thru. it means being fully present in the moment.


freedom is no earplugs, no paper plates, real cutlery and eating at the table together as a family.

being free of crippling pain means socializing. going to parties. going to church. being with family. being with friends. being with friends that are considered family. 
and 
it means painting!?!

not artsy fartsy painting but the "gimme a paint roller so i can give the walls a fresh coat of paint" type of painting. yes, the 5 gallon bucket of paint that's been sitting in the garage for the past 6 years has finally and triumphantly been used. i love painting. always have found it very therapeutic. prior to lyme, i was dabbling in the interior decorating industry - and did a fair share of painting other people's homes - you know, back in the good ol' days when "faux" paint finishes were all the rage. yes, that was a long time ago. anyone care for tuscan inspired walls? nope. didn't think so.


so yes, me oh my, i've done a lot over the last 2 months. at times, my exuberance and zest for life has overridden the protests of my body - which i've ignored and then learned the hard way. i can do but i mustn't push to do. if i do, i pay the price. harumph. i have to remember that my body is still in a fragile and weakened state. DR H warned me about doing too much too soon. i need to slow down and take it easy. pshhhht! yet, i know he's right. in fact, i'm currently in a bit of a pickle - which is most likely attributed to "biting off a bit more than i can chew" sort of thing.

at the beginning of january, i was given the opportunity and had the great priviledge of getting to go on a youth trip with graham, his co-workers, their families and about 22 junior high and high school students. we spent the weekend up in manning park. that's right. a weekend away with 20+ teenagers in the mountains. i'm sure a few folks feel faint just at the mere mention of that. i, on the other hand, had a ball. did i totally over do it? absolutely. was it maybe a bit too much, too soon? probably...and i'm in a bit of bind now because of it...but boy, was it wonderful to be able to do something i love and have missed so much.

pelting kids covered with shaving cream with cheezies

i used to be a youth worker volunteer. in fact, that is how graham and i met. he was looking for volunteers...and put an "ad" in the church bulletin. i responded. and the rest, as they say, is history. he was looking for volunteers and got a wife! ha ha. true story.

me dominating at playdoh pictionary...oh, yeah, i still got it

right from the start of our relationship, our dream was to have a home open to the kids that graham works with. his ministry and our hearts revolve around "at risk" youth. i went thru a lot of pain in my teen years and as a result have a heart for hurting kids. i always envisioned our life and home serving as a refuge for the youth God brings graham into contact with. yet, life has not at all gone how we had hoped and planned. our home has been a far cry from a place of refuge, rest and comfort. lyme has meant letting go of a lot of our dreams and plans. one day they will return...the old dreams and hopes and even new ones may emerge from the ashes. i finally see that as a possibility again. the trip to the mountain re-awakened that in me.

me in the kitchen helping to feed the masses and no one got food poisoning?
miracles do happen

unfortunately, it possibly may have re-awakened some lingering lyme bugs as well.  proper rest is so crucial. you'd think with all the activity and excitement, i would have had no trouble sleeping but i did. i even brought sleeping pills but they did not help. and as the weekend rolled to a close, i started to see some "red flags". the day after our return, i was flat on my back in bed. pain and fatigue my companions. yet, i wasn't completely alarmed as i totally expected it. i was certainly relieved that i was thru the worst of it within 24 hours. however, i've just not quite been able to get a leg up on my fatigue and pain since. 


there is much that it could be. yes, the fatigue could be associated with a flare of lyme. yes, the muscle fatigue and burning, searing pain could be lyme or babs or both. it could just as well be due to vitamin deficiencies. makes sense. or it could even be that all the activity has got some toxins circulating. 


it could very well be any of those things. i'm concerned. DR H is concerned. HOWEVER, i'm on the road to recovery and i'm mentally staying that course. yes, we may still need to beat back some bugs, but we've got the upper hand now. 


i am in a place of rediscovery
and 
recovery
and
i am also covered in zits.
on a daily basis, i'm either covered in hives or zits. i'm so cute. the breakouts (face and back) are indication that my body is dumping toxins. that's a good thing but we must bind them up and flush them out and not allow them to re-circulate.


DR H is starting me on an intensive toxin binder. i also have lipemia (fat in my blood) so he's starting me on a binder called cholestyramine. it's a drink that has the consistency of sand. yum.


i am to drink sand 3 times a day for the next week and then add in some herbal antimicrobials. cumanda and lyme transfer factor. these are specific for lyme. fortunately, avery is already on these so i can just tap into her supply. (the "benefits" of having a house full of lymies). i will be on high doses of these for one week. this will give us somewhat of a clearer idea of what the origin of my recent out cropping of symptoms is due to based on my body's response to these therapies. what is very clear right now, is that this is fairly critical time (for both parker and i). during my appt, DR H remarked how difficult we have been to treat and how our bodies have never reacted or responded normally.
"you guys are weird." he said. "you're weird. parker's weird. even your husband is weird." ha ha. true 'dat!


with our complexly weirdness in mind, DR H wants me (and parker) to be seen by DR D in 2 weeks. he is concerned that my symptoms may spell out the need for a short course of either oral or IV abx. he reassured me that if this is the case that it will only take a short course of 6-8 weeks to re-gain control. however, if at all possible, he's wanting to keep me off the pharmaceuticals. there are lots of potent herbs and homeopathic remedies we can utilize. i love that i have a doctor who's not just all about pharmaceuticals. obviously, some intense decisions need to be made and being seen in-office is ideal but not exactly always realistic when your doctor is a 2 hour flight away. fortunately, DR D is only a 2 hour drive away. it is wonderful that DR D and DR H work together to provide care. to fit us in on such short notice, DR D is seeing us on her day off. we're so grateful for the dedication of our docs to get us healthy. 


i dyed my hair the color of merlot this week...

ok. so it doesn't look burgundy but it really is.

i figure if you can't drink it, you might as well wear it.

the proof is in the sink...remnants of my new deep merlot  hue

 ok. i know that seemed to come out of left field. it's my attempt at a not so seamless segue about cocktails. as per DR H's orders, i'll be heading out shortly for my first cocktail...a myer's cocktail that is. not nearly as glamorous as a cosmo and about quadruple the price. if it helps with my energy levels, than DR H will move to help us set that up at home. cool. i could have my own bar before this whole journey is over. after all, i am proficient at re-constituting and mixing IV abx...after that, mixing and making my own cocktails should be a breeze. of course, it's not ideal (is anything about this journey ideal?) but it can be done far cheaper (what? something cheap on this journey?) at home than at a naturopath's office.


however, safety before money. my first cocktail will be supervised under the watchful eye of a doctor.
and lookee here, clock says it's just about cocktail hour, time for me to head out.


cheers! 

THE NEXT STEP?

yesterday marked the end of the 7 day IV provocation trial Parker was on.


from where i sit the next step in our journey appears unclear. 


during the 7 day trial, we did see a return of psychiatric episodes. they were mild but they were undoubtedly there. they came at the 72 hour mark of restarting this particular iv drug. this most likely means one thing - parker still has bugs in his brain...and IV treatment is his best shot at eradicating them. and yet, due to collateral vein complications, his PICC line must come out. we've kept it in (nearly 4 months) for as long as we can.


i just want this all to be over. i want it to end. all of it to end.


last week parker hit a wall. he cried. he rarely cries. he rarely even complains. his birthday was in december. he was too sick to have friends over for a party. again. his big plan for his special day was to go for lunch with my dad. he was really looking forward to that. yet, he was too sick and in too much pain to even do that. his birthday lunch and dinner were eaten on the couch.

it was heartbreaking for graham and i. we went to bed with heavy hearts. the next morning, i mentioned to parker how i was sorry that he'd had a bummer day. with a puzzled look, he replied, "what do you mean mom? i had a great day."

gulp. he is an "old" 12 year old. i learn a lot from him. 


yet, we all have our breaking point. and last week, he reached his. he came into my room and lay down beside me. even tho' he didn't say anything, i could sense his sadness. it was emanating from him. at first giant, silent tears slowly rolled down his flushed cheeks. yet, he still quietly lay there,  trying his darndest to remain strong and brave. "there is strength in tears." i whispered. "it's okay to be sad, buddy. don't hold it in." and then it came. he sobbed for the pain he has endured. he cried out in the pain that he is still in. he grieved for all that has been lost. he vented and gave in to the hopelessness that is only ever a heart beat away. "i'll never get better. nothing helps. nothing changes. i've been sick for over 2 years. this will never end. i never see my friends. i hate taking pills. i'm tired of IV. i hate my life."


all i could do was wrap my arms around him and acknowledge his pain and his fears. yes, it feels like it will never end. yes, it is unfair. yes, it has been too long and too much and too awful. yes, it sucks so bad that it sometimes sucks all the hope out of me too...but there is always hope.

no matter how hard it is to believe, no matter how it appears, this will end. i can't tell him when it will end. i simply don't know. that is one of the hardest parts about this journey. there is no end date to aim for and to hold on to as a beacon of light. will it be 2 more weeks, 3 months, 9 months or 18 months or longer...there is no way to know...we must just hold on even tho' the end is an undefinable, indefinite time frame...we must hold on with no end in sight and somehow hold on to the hope and keep the faith and belief that it WILL end. we have to believe that. we have to hold on to that.


and now we arrive at today. and where we must go and what we must do. and what is the next step.


and i find myself contemplating not great options.


the PICC line must go. that much we know for sure. however, since parker's response to the provocation revealed there are (most likely) still bugs in his brain, then continued IV is the best option. IV most effectively penetrates the blood/brain barrier. it is possible to achieve that with oral treatment but far more difficult. continuing IV means pursuing a PORT surgery. with no support coming from the medical system here, this means it would be done in the usa. estimated cost is between $4,000 to $7,000. the cost plus dealing with our kid being put under general anesthetic as an out of country patient is unsettling and unnerving. yet, we have absolute faith that God would make a way, if that ends up being the best option for parker.


the other option? have faith that he's had enough IV and that oral abx would continue to keep him on the road to recovery. have faith that the right combo of oral meds would be enough to penetrate the blood/brain barrier. have faith that ceasing IV wouldn't cause a backward landslide. of course, if he deteriorated on orals, we would move quickly to get a port and re-start IV treatment, however would that lapse in IV be destructive to his over all progress? what if it gave the bugs time to proliferate in his brain again? as difficult as it still is, no one wants to go back to what it has been.  


yet, a decision must be made. 


that is the weight that sat with me yesterday as i waited for DR H to call. our appointment was scheduled for 1:45pm. it is rare that he is on time - (which is a sign of a good doctor, if you ask me.) he doesn't rush his patients or their appointment. as a result, he is often running at minimum 30 minutes behind. generally by afternoon, it is more like an hour or two. at any rate, i knew yesterday would be a long day of waiting and wondering what the next step would be. and it was....DR H didn't call until 4pm and worst of all - we MISSED his call. our stupid phone malfunctioned. we spent the next hour or so trying to get through to him. finally his receptionist got thru to us and our appointment got re-scheduled to this morning.


needless to say, by that time, i had just had it. the stress of the day wore me down and i was grumpy, jumpy and over emotional. i ate my way thru a bowl of ice cream, 3 oreos, 2 pieces of rocky road fudge and half a bag of licorice. not kidding. i was comatose by 7pm. perfect. just what i was after. even still, the tension still hung thick in the air. and the kids picked up on it. parker knows what options are being weighed. he's upset. he's so done with it all. after an initial angry vent, he went into shut down mode and just got really, really, really quiet. graham was on edge and dis what he does to cope - work. he buried himself in his office until 2am. great for the work video he's making not so great for his energy levels. avery had a major 2 hour long meltdown.  clearly, it was not a stellar nite.


thankfully, the phone co-operated this morning and DR H was only 15 minutes behind schedule. my appointment was fairly straight forward. and the next step in my journey was fairly clear and a plan of action was quickly forthcoming. (will update that tomorrow)


parker, on the other hand, not so simple...and we still don't know what our next step will be. DR H really felt he needed a few more days to mull things over. we don't at all feel that he doesn't know what to do. we believe he does. he just wants to take time to weigh all the options and make the very best plan of action. stopping IV treatment is not remotely ideal right now but he is trying to figure out if there is anyway he can work around it with oral treatment. if not, then we will have to move forward with getting a PORT. the weight of this decision weighs heavy on all of us. there is a lot riding on this and a lot of pressure bearing down on DR H. even tho' it sucks to have the unknown hanging over our heads for a few more days, we are so thankful that DR H is not willing to rush to make such a critical decision.


we expect to know what the next step on this journey will be by monday evening. we'd appreciate your prayers for wisdom for DR H this weekend. seeing as i've depleted our sugar supply, i shall face this weekend with full mental and physical awareness. therefore, we'd appreciate prayers for peace to reign in our hearts and home. 


in parting, i will close off with this prayer a friend, who is in the thick of her own fight with lyme, sent me this week. it's been a source of tremendous comfort and a much needed reminder to keep trusting. 

"COME TO ME, and rest in My loving Presence. You know that this day will bring difficulties, and you are trying to think your way through those trials. 


As you anticipate what is ahead of you, you forget that I am with you--now and always. 


Rehearsing your troubles results in experiencing them many times,
whereas you are meant to go through them only when they actually occur. 


Do not multiply your suffering in this way! Instead, come to Me, and relax
in My Peace. I will strengthen you and prepare you for this day, transforming your fear into confident trust."


  

THE FIRST 7

i am back from my self-imposed vacation from email, FB (for the most part) and blogging (i hope). i guess you could say i had a holiday hiatus of sorts...just needed to truly unplug and have as few distractions as possible throughout Christmas. it was nice. it really "set apart" the time for me...and gave me time to attend to such frivolity as adorning the dog in holiday attire.

my deer harrison

it was good (albeit harrison might disagree).
but now I'm way behind on here
and 
a lot has been going on. i can't believe we're already heading into the third week of january! my word! time has ripped by with lightening speed - just the first 7 days of 2012 alone have brought with them a torrent of change. 


it's been a mishmash of everything...from "out with the old, and in with the new", from challenging to exciting, from bittersweet to celebratory, from days where the lingering feelings of the "same old, same old" still taunts us to the days where revitalized energy has led to the rediscovery of old hobbies and interests, from the struggle to do the mundane to the ability to learn a new skill. 


and yes, a lot of it that was rolled into the first 7 days of the new year!  our "out with the old, in with the new" encompassed new carpeting! our home is a rental. we've lived here 13 years. the carpet was abused by many tenants before we moved in. we did our best but it really was time for it to go!  it was 20+ years old, the new was needed! the old had once been white but was now grey (gross!), the new is (ironically) grey (ha ha!). 

out with the old...

we had asked our landlord before christmas for new carpets. despite remarking at how expensive new carpeting would be, the landlord sent out a carpet guy to do an estimate but when we had not heard back after several weeks, we figured the non-reply was indicative of a "no". we were immensely surprised and thrilled when we got a call from the carpet guy the day before new year's eve saying,
"your carpet is in, i'm coming on the 3rd to install it!"
apparently the landlord had approved the request - but hadn't thought to tell us that! 
it was a mad scramble and a ton of work to move furniture on such sort notice but it was sooooo worth it! you really don't realize how much 'stuff' you have until you have to move it. contrary to how it may appear, i'm not a hoarder!!

i am not a hoarder. i am not a hoarder. i am not a hoarder.

we feel incredibly blessed to have the new carpet. we are enjoying treading on the plush newness and i'm becoming an avid vacuumer! and so very grateful to have the energy to be able to do so!

...in with new!
note: i was already vaccuuming circles around my poor exhausted hubby 

soft, squishy, springy underlay is also wonderfully forgiving on the knees as well! that has been a welcome comfort as many of the changes we've experienced in the first 7 days of the new year have required a substantial amount of time spent on our knees in prayer. prayers of thanksgiving, praise, awe at the wonder of how God works and prayers for wisdom and strength and for surrender, deliverance and ultimately continued healing. all of it is noteworthy enough to be deserved of its own designated post...which i'll get to eventually. for now, i'll start with the most recent because it is the most pressing prayer item.

last thursday, (jan 13), parker started a high dose, one week round of an antibiotic that hits the bugs in the brain. his response to this "provocation test" will determine whether or not we need to continue IV treatment (which would mean travel to the USA for a PORT surgery). you might recall, that the original plan was to have his picc line pulled the first week of january.(click here to refresh your memory) amidst all the changes there were, the removal of his PICC line was not one of them. this has been delayed because he had an intense herx during what was supposed to be his final round of treatment (this was over christmas). this intense response caused great concern as we saw a return of some psychiatric symptoms. this is an indication that he may still have "bugs" in his brain...neuro lyme is most effectively treated with IV meds. hence, the delay in picc removal and the need for this last minute, one week provocation test. we will be speaking with DR H this thursday (jan 19) and we expect a decision about IV treatment will be made at that time.


we'd appreciate your prayers...of course, we greatly desire that no more IV treatment will be needed however, we are specifically praying for God to clearly reveal what parker's body needs. love you all. thank you for your continued support. it is of great comfort to know that this pivotal week will be blanketed with prayers.