SHANNON'S SUPER M.U.D

here's my latest M.U.D. (Medical UpDate) and the scoop on the outcome of my appointment with DR H. i have super news to share! 
i have been OFF of all abx since aug 31.

yup, you read that right...i've been OFF both oral and IV abx for nearly 4 months.

i'll give it a moment to sink in... after all, it is mindbogglingly, fantastically awesome news to share.

yup. doing the happy dance.


i have been ON aggressive oral abx treatment since april 2007...and IV abx since jan 2008. so for me to be OFF of abx for the past 4 months and be doing (relatively) well indicates that my lyme and co-infections have been brought down to more manageable levels and my immune system is beginning to do what needs to be done in order to keep them that way. 


clearly, this is huge progress. 


i have NEVER been able to maintain any level of health OFF of abx in the past. often, there has been a very fast deterioration and a very rapid return of debilitating symptoms during previous trial runs of drug holidays. if co-infections are at a high load, lyme rears its ugly head very rapidly upon withdrawal of abx treatment. however, this has not been the case with me this time. we've not seen any indication of a regression. in fact, i am actually continuing to get stronger and improve. that is an awesome and remarkable gift. DR H believes that this is a good indication that we have finally beaten both my babesia and bartonella infections into submission. at my appointment, there was no talk of "remission" for either of those infections or lyme but i'll take a rendering of "submission" for the time being. that sounds like music to my ears and for now, DR H is continuing to keep me OFF of ABX! HOW AMAZING! 

PORTRAIT OF SUBMISSIVE BUGS

i am not able to go so far as to have my PICC line removed. we are not at that stage yet. DR H is concerned that my body is in a sort of 'holding pattern' right now - and that the scales could easily tip either way. partly, because we've seen improvement with me before...only to have it followed by a regression of epic proportions. even tho' i'm doing better and am getting stronger, DR H is very concerned that i am in a very fragile state...after all, my nutritional intake is so super restricted...it's pretty much a non-nutrient intake actually. this does not bode well for building my body's strength or defenses.


since september, i have been intensely reactive to and unable to eat any fruits and veggies. this is certainly no way for anyone to be at the best of times let alone when one is needing to eat in order to build up and strengthen the immune system. this is a critical and crucial time. my body needs to be fueled properly in order to keep fighting...and yet, right now, eating healthfully makes me terribly ill and toxic. i know, right? so bizarre.

basically, i can eat meat and simple carbs...simple being the operative as even complex carbs are triggering toxic side effects with me. i have to watch my fat intake because i have above normal levels of lipids (fat) in my blood. even more bizarre. i am like a skinny fat person.  the food re-activity is confusing and frustrating. i LOVE vegetables. that is what my body has always naturally gravitated to...and now, they are quite literally the death of me. so what's a girl to do? for starters, the short term plan is that i will be on on IVs to address my nutritional deficiencies and supplement several of my depleted mineral levels.

and long term? am i looking at a future devoid of fruits and veggies? i can't imagine. but no one really knows what to do with me. over the next little while, DR H is going to be networking with some colleagues to figure it out. we do know that this is most likely related to my mast cell disorder. and if i start to explain THAT, this post will morph into a lengthy and very confusing scientific journal entry...while it is complex to explain, it is all rather fascinating (to me, anyway) so i'm working on a post that'll explain it as simply as possible as soon as possible.


there is much more to talk of...in addition to dealing with my nutritional needs, over the next several weeks my treatment will be primarily focussed on bringing down my viral load (which is very high), and addressing my immune deficiencies (i have issues with both igA and igG deficiencies) and tweaking the meds that are part of the treatment protocol i am on for my MCAD/mast cell disorder.


am i done with abx treatment for good? no. DR H believes i'll still need another round of IV. not sure when and not sure for how long. am i out of the woods yet? no... but PRAISE GOD, there is LIGHT! i feel it. i know we've been at the place before where we dared to think that we could see a pinprick of light at the end of this long, dark tunnel only to fall down the rabbit hole again.

but i'm more hopeful than i've ever been before that my improvements thus far are and will be sustainable...that hope filled confidence truly came to light for me about a week ago.


i was crawling into bed one night and as i was doing so, i had a very odd thought flash thru my mind. i was thinking about how i couldn't wait for the 'morrow. it stopped me short in my tracks...


'hold on,' i thought, 'why am i feeling excited about tomorrow? i have no special plans.' 
i nearly toppled out of bed when i realized that it was because i wasn't dreading the day to come...the 'morrow no longer felt like a dreadful burden to bear. 

and then the flood gates were released and the tears poured forth... as they do again as i write this and re-live that strange, foreign, amazingly wonderful moment when i experienced the simple pleasure of just being alive. 


i haven't felt that way in 6 years.


i do believe it is the dawning of a new day. 

SPARKY'S M.U.D

here's the M.U.D (Medical UpDate) on parker:


i guess the biggest news i can lead out with is that we will be stopping parker's IV treatment sometime in the beginning of january - possibly the first week. what a way to ring in the new year! parker has had a total of 16 months of IV treatment and is looking forward to being free of a PICC and all that it entails.

"viral picc" is going bye-bye!

this is a big deal and a step forward albeit pulling the PICC line and stopping IV treatment isn't because DR H feels parker is done with IV - rather parker's  naughty PICC, (whom he named viral picc,) and the development of collateral veins is forcing the decision to end IV.

parker's collateral veins

HOWEVER, DR H is hopeful that parker's symptoms and improvement will be sustainable with oral abx. AND that is exciting! 4 months ago, when parker's original picc, whom he named raymond PICC-aso, suddenly became no longer viable, we HAD to move forward with getting it replaced...without question he needed to remain on IV treatment. so while the PICC removal is premature, it is still a big deal and a "WHOOP! WHOOP!" because we think we can make it without it! 

viral picc and his pad during a lymph leak 

we are ALL looking forward to bidding viral picc farewell. he has been a very naughty and stressful PICC to live with - he's forced us to deal with lymph leaks, blood clots and bleed outs -  additionally, keeping up with the rigors of an IV schedule (at times parker's IV treatment was every 8 hours round the clock) is incredibly exhausting. parker is most looking forward to being able to fully submerge in a tub...(a PICC can't get wet) bathing with your arm above your head is not too relaxing. 


before the PICC removal takes place, DR H wants parker on one last very intensive IV treatment regime. this will be added into his existing treatment regime over the next week. once everything is incorporated, we will blast away on the new protocol for a solid 2 weeks. DR H has already prescribed a plan for the oral treatment that will follow. we have a phone appt with DR H on jan 3 as it is expected that there will need to be some adjustments and tweaking made - some of which is dependent on his response to this last course of IV treatment. 


it is very clear that parker must still be on abx. he is greatly improved but we are not out of the woods yet. not by a long shot. if he begins to decline on the oral treatment than we will have to resume IV treatment and because a PICC line is no longer an viable option, this would mean that he would have to have an IV PORT. (this is an IV device that is surgically implanted under the skin). we are hopeful that we and he never have to face that. currently, his most vicious infection is the babesia - and there are many potent oral medication options used to treat it.


way back in october, DR H (temporarily) stopped parker's antiobiotic treatment while we got the mast cell treatment protocol underway.
the reason this was done was two-fold:


first, it was done so as not to muddy the waters, so to speak. we needed to have a clear clinical view as to whether or not the symptoms that were suspected of being mast cell related were responding to the specific treatment for it. there is much cross over b/n the symptoms of lyme and systemic mast cell disorders. we were pretty certain which symptoms were mast cell related and which were lyme/babesia related but it was important to get as clear a picture as possible. (is that clear as mud!)


secondly, it is not unusual practice for a LLMD to put a patient on an "abx holiday" or to "pulse" abx - this gives the patient's body a rest from the meds and helps the physician re-evaluate the patient's health and symptoms. the goal of treatment is to put the infection into remission and kick start and support the immune system into taking over. the response of the patient during these drug holidays helps guide the physician in deciphering what the next step in treatment is needed and how best to address the specific needs of their patient.


during the four weeks that parker was off of the abx, we saw a positive response in the symptoms that were suspected of MCAD. primarily, these are flushing, loopiness/psychiatric outbursts immediately following any considerable exertion, mystery spots, chest/heart pain and syncope-like episodes (near fainting/blackouts). there was some lessening of his joint pain as well. it was wonderful to see such a remarkable improvement in those symptoms! however, his babesia/lyme related symptoms became more pronounced and his overall health deteriorated. once he was re-started on the IV and oral abx used to specifically treat babesia, he improved...albeit had to endure some pretty rough herxing. a wonderful and unexpected bonus of the MCAD treatment, is that his herxing has been less intense and better managed.


in fact, the MCAD/masto diagnosis really is the missing link to several symptoms that have puzzled and troubled DR H and DR D for quite some time. back in spring of this year, DR H kept remarking that he felt like he was "missing something" with parker. it is good to have found the missing piece to the puzzle. we are hopeful that parker's fight against lyme and babesia will be a little more straightforward and a little less complicated now that his MCAD/masto is being treated.


there is more dirt on parker but i think if i write any more at this point, it'll be clear about as mud...

LETTING GO

if you are on FB than you have been privy to my venting and pain today and you were witness to my raw emotions...


"i am once again picking up the pieces after dealing with more medical BS - so sick and tired of a blind eye and deaf ear being turned on Parker's suffering. i feel murderous rage and inconsolable sorrow."


in short, we had an appointment at BCCH today for parker. it did not go well. this appt had been in the works for some time and DR H had spoken with this doctor. while we had no expectation that this doctor would jump on board with treating parker, we were hopeful that this appointment would lead to some care and support. that did not occur.


really, there is not much point delving any deeper than that. it is the same old same old and as such, it raised the ire, the pain, the mistrust, the disappointment, the sense of abandonment that we carry from the many similar encounters that have gone before. as natural and needed and normal as it is to walk thru the emotional fall out of it, i will not allow it to define me. define us. define this journey.

"forgiveness is about letting go of the hope

 that the past 

could have been different."

this is NOT about what doesn't happen. it is NOT about help withheld. nor the injustice of it all.


this journey is about the overwhelming power of God at work in our lives to bring us to a place of healing and redemption.



"Then we cried out for help to the Lord, the God of our ancestors. He heard us and saw our suffering, hardship, and misery. By his great power and strength he rescued us from Egypt. He worked miracles and wonders, and caused terrifying things to happen. He brought us here and gave us this rich and fertile land." deut 26:7-9


it is about His sovereignty over the injustice of it.

"You'll know then that I am God. No one who hopes in me ever regrets it... I'm the one who's on your side, defending your cause, rescuing your children...Then everyone will know that I, God, have saved you—I, the Mighty One of Jacob." isa 49:23b,25,26b


it is about His provision and His help


"I lift up my eyes to the mountains, where does my help come from? My help comes from the LORD, the Maker of heaven and earth." psalm 121:1-2


He cares. He sees. He hears. He heals. He loves us. 


"She said, 'I can't watch my son die.' As she sat, she broke into sobs.
Meanwhile, God heard the boy crying. The angel of God called from Heaven to Hagar, 'What's wrong, Hagar? Don't be afraid. God has heard the boy and knows the fix he's in. Up now; go get the boy. Hold him tight. I'm going to make of him a great nation." gen 21:16-18

OUR CHRISTMAS BABY

12 years ago today, my hair looked like this:

and
i also gave birth to our christmas baby... parker noah aka sparky

welcome to our family, sparky

parker's actual due date was christmas eve
however, given my first labor and delivery went at the lightening fast speed of 1 hour (i know. don't hate on me!) - and produced a hefty 9lb 1oz first born son, taylor, my doc felt going full term the second time around was asking for trouble...possibly a "by the side of the freeway" type of delivery


it's impossible to know exactly how any labor and delivery will go but at any rate, there was no way my doc was letting me go full term, so in early december, our doc, graham and i sat down, calendars and day timers open, to chose the day to convene upon the hospital 
given the time of year, it was a rather convenient thing to do and it definitely appealed to my organized side!


when we arrived on the 14th for the planned induction, the labour and delivery RNs were less than impressed and rather quite skeptical - stating that this was a matter of convience rather than necessity


i didn't argue
after all, every labor and delivery is different
i couldn't guarantee a speedy delivery and i wasn't about to make claims of how i wouldn't take up too much of their time....after all, you just never know...


of course, they were shocked into a stunned silence when we welcomed parker noah into the world...a mere 45 minutes later. (i know. don't hate on me!)

set for a speedy delivery

our easy going, affable, laid back, happy go lucky little christmas baby...

our little sparky

and now he is 12.

parker - summer 2011
little pool fun with his dry-pro picc line swimming cover

happy 12th birthday to my christmas baby, Parker. you amaze me and i learn from you - you are tough. you are brave. you are determined. you are witty. you are tender-hearted. you are one of the sweetest, most compassion-filled people i know.

you are the Spark-y in our lives and we love you.

HOME SUITE HOME(wood)

we're home
and
LUCKY to have made it home! we almost didn't make it thru TSA security checkpoint at oakland airport...and nearly had a heart attack as a result!


note to self: ALWAYS travel with passports

we handed over our nexus cards to the officer at the security checkpoint...just like we've done 1,000 times before.


security says, "i need to see your passports."


"UMMMMM....we don't have them."


security grimaces, shakes his head and authoritatively states, "i'm sorry i can't let you thru with just your nexus pass."


i nearly dropped dead on the spot...visions of the plight of tom hanks character in the movie Terminal streamed through my head. my stomach took a nose dive and i am pretty sure the pounding of my heart was volatile enough to cause seismic shifting in the tectonic plates beneath my feet. 


my ghostly white husband stuttered, "we don't have our passports. ummm, my wife and i have our driver's licenses...but nothing for the kids. would that suffice?"


as if echoing through some long tunnel came the same reply, "i can't let you through. i need secondary PICTURE ID for EVERYONE. nexus is not enough."


at this point, my faintness was quickly replaced with extreme irritation, forget seismic tremors, dark, thunderous clouds were booming above me now.

"SINCE WHEN?" i huffed, "this has never been an issue before and we fly out of this airport every 3 months. as a matter of fact, for the last 8 flights we've been rather abruptly told to put our passports away because they are NOT necessary because we have nexus." 


totally brazen, i know, right? but i was parlaying between panicked desperation and P-O'd incredulousness.


then i figured i better temper my irritation with an air of demurely, pleading desperation. so i turned my big, teary blue eyes on him and pathetically stared him down.


and graham quietly added, "um, we just flew in 5 days ago. nexus was acceptable then, has something changed?"


finally, he took pity on us. "ok. fine. i'll let it slide this time. obviously, there are some consistency issues with the TSA. just make sure you travel with passports from now on."


oy. 
we passed thru the rest of the security screening without incident. what a relief...after that, i was worried... 

we finally made it to our gate - only to find out our flight would be delayed an hour and we couldn't access the airport wi-fi! argh! but at least we made it home.


yes. home suite home. i meant to use "suite" not "sweet". that was an intentional misspell and not the result of my lyme brain (albeit we had one epic lyme brain fail moment on this trip)


homewood suites is the hotel we stayed in. it is our home away from home. this was a second stay in california. we accidentally stumbled upon this amazing chain of hotels this summer. we had appts scheduled in seattle with DR D...and had tagged them onto the tail end of our holiday on whidbey island. which meant that we expected we'd have the dog with us therefore we had to book a dog friendly hotel.


with some research, graham found the homewood suites. it ended up being an AWESOME discovery! 
why?
the rates were decent and included breakfast and it is a "suite" hotel. suite = more space... space for meds. space from kids :). additionally, they have a pool. they have a hot tub. they have a grilling area. they even have bball courts. they serve fresh baked cookies EVERYDAY at 3pm. the one in california is in SJ  - which is always at least 10 degrees warmer than SF. it has AMAZING staff. and it ended our somewhat fun yet somewhat stressful on line priceline bidding. 


we jumped for joy during our first seattle stay - when we discovered that the rate included breakfast AND supper. we couldn't believe it. aside from the great ammenities, it was incredibly cost effective. a bonus was that it meant graham got a break from cooking. we were hooked and we were so thrilled with our stay that we decided we'd look for one in the SF area. 


we found a homewood suites in SJ and booked a room for our august visit. we arrived and we were incredibly disappointed to be checked into a SUPER SMALL room... like "i'm breathing down your neck" teeny tiny small and NO storage - given the staggering amount of meds and supplies we travel with there was no way to "make" it work.

5 days worth of IV supplies

i went back to the front and asked the gal if there was a room that was a bit bigger. i explained the configuration of the room we had had in seattle and explained we had thought that that was what we had booked for at this hotel. she was so helpful and said, "no problem, i know exactly what you are talking about and yes we have that same kind of room here. i'll change rooms for you."


she went on to say that a room was available but it was still being cleaned, so we wouldn't be able to check in right away.


"oh, no prob." i said. 


it really wasn't. i was just so grateful and relieved they could put us in a bigger room. it was time for parker's next dose of IV...but hulloooo, i've done ivs in airports, airplanes and just about everywhere under the sun. certainly setting up shop in a hotel lobby didn't phase me in the least.

IV in the car

but i figured it could alarm the hotel staff. so i said, "hey, my son's due for his next dose of IV. i'm just gonna set up shop here but just so you know - it is all needle-less and not bloody in the least. just want you to know so as not to alarm you."


guess that alarmed her. it was really NO BIG DEAL to me. honestly. and it is so normal to us, i guess we forget how abnormal it really is!

IV at in-n-out

"OH no!" she said, "let me see if something is available now."


"really this is NO BIG DEAL" i said. "we do this all the time and in less than appealing places, i might add! your lobby is lovely. there is coffee. there are cookies. this is super."


she didn't even look up as she frantically clicked away, eyes fastened on her computer screen.


"oh, look!" she gasped in sheer relief, "there is a room available. i can upgrade you for free - it's a 2 bedroom, is that okay?"


"is that okay? are you kidding me? that's awesome!!" i could hardly believe my ears


in short order, i had a room key in hand and we were off to check out our new digs. 
i opened the door to room 304 and proceeded to skip, dance and tra-la-la-la my way thru the spacious suite. 2 bedroom, 2 full bathrooms, living room, kitchen AND 3 flat screen tvs. i thought i'd died and gone to heaven. the kids thought i was certifiable again.

we were so thrilled and so grateful that we bought the front desk girl flowers.


at dinner that night, the hotel manager, doyle, came by and introduced himself. (probably curious about who that family, with the copious amount of drug paraphernalia, was that had checked in to rm 304. ha ha.)


he introduced himself. we chatted. he asked if we were there on vacation.


um. no. medical reasons.


and thus our story was told.


"how often do you come?" he asked
every 3 months we said.


"here's my business card. you call me before your next visit. i'd like to help you out with accommodations on your next visit."


that is how we found ourselves back at our home away from home again.


a couple of weeks ago, graham gave doyle the manager a call. he let him know we would be back and booked a 1 bedroom because that is what we can afford. we had no expectations.


last monday afternoon, we arrived at homewood suites
there was doyle on the steps.
ready to greet us and check us in.


front desk clerk smiled at graham and said
"wow, you know your somebody when the manager checks you in"


despite the fact that we had booked a 1 bedroom, doyle gave us a 2 bedroom at a rate that is even less than a 1 bedroom. how astounding! we were blown away - in fact he even gave us "our room" again - #304. 

once again, i found myself skipping, dancing and tra-la-la-laing my way through our home suite home(wood)


thank you God for doyle and our home away from home.

TRIPLE "A" DAY

we are blessed with 
Astonishing support, an Amazing doctor and an Awesome God.


there is much to process after our appt's yesterday... we have confirmation of an additional disease but that is okay! God is sovereign over it all. it is a mast cell disorder. 


i will write a more in depth post next week but for now here's a very brief introduction to the world mast cell disorders. 


Mast Cell Diseases comprise disorders characterized by accumulation of genetically altered mast cells and/or abnormal release of these cells’ mediators. everybody has mast cells and they play an important role in the body however, in patients with mast cell diseases, the mast cells become hypersensitive and out of control. 


Mast cell diseases include systemic mastocytosis (SM), where the body produces too many mast cells, and mast cell activation disease (MCAD), where there is a normal number of mast cells but they are too easily activated. mast cells contain chemicals and when they are triggered they release (called degranulation) these chemicals. this toxic overload increases inflammation levels and can cause both skin rashes and major systemic alterations.


a really good tutorial on mast cell disorders can be found by clicking here on these youtube videos on mast cell activation symptomatology. this is a 3 part series put out by the mastocytosis society. 


parker and i both have a mast cell disorder. at this time, we have a diagnosis of MCAD however, our symptoms, both skin and systemic, make a diagnosis of SM a possibility. a diagnosis of SM is made thru skin and bone marrow biopsies. (eek!). it would be critical to undergo this testing, if there was a difference in the way the two disorders are treated. however, the drug treatment is the same for both. furthermore, treatment is aimed at symptom control and neither disorder is curative. in the future, it may become necessary to rule in or rule out SM, but we will cross that bridge if the need arises.


for the time being, the symptoms that were suspected of being mast cell related in both parker and i are responding positively to the treatment protocal. praise God!


one would think i would be greatly discouraged and downtrodden to be dealing with this. however, the way in which this diagnosis came about is nothing short of a miracle. this is considered a rare disorder and our diagnosis was an undeniably God engineered reveal. i truly stand amazed at the ways in which God works. it is quite the story and i hope to have it down on paper to share in the coming weeks.


on the lyme front, both parker and i have had some major breakthroughs in our battle with lyme, babesia and bartonella! Praise God! i will break down the details and next steps in our treatment in a later post. as usual, we left our appt on information overload and with a lengthy and detailed treatment regime. the likes of which will take several weeks to implement. 


thank you to each and everyone of you for your amazing show of support - i can't express what it meant to be able to share those FB "likes" and your precious emails with parker and avery. they are tangible reminders of just how many folks we have standing with us. what an incredible gift you have given our family. we are touched and humbled that you choose to walk this journey with us.

UP, UP AND AWAY

we are in SF to see DR H! SURPRISE! my intention was to blog about our upcoming trip ahead of time but that (clearly) did not happen.


we flew into Oakland yesterday (monday) morning, hit an In-N-Out Burger - thankfully, i can still eat the burgers - so long as they are devoid of anything somewhat healthy - such as the tomato, onion & lettuce - veggies are still off limits for me, and then made the short drive to our hotel in San Jose. even though our plane already landed, Parker and Avery haven't. 

avery and parker
up, up and away...

it is hard to believe it has only been 3 months since our last in office visit. in some ways, the time has gone fast, in other ways it's gone slow. so much has happened since our last in office that it's hard to wrap my mind around it. i am incredibly relieved to be here.

this afternoon, we are heading to our appointments with DR H...and i am asking for major prayer. please pray for discernment and wisdom for DR H - I believe some really critical and pivotal decisions need to be made today.




if you would be so inclined - we would LOVE for you to drop us a line - either here on the blog, on FB or at my email sngoertzen@gmail.com it would mean the world to us. 


the simplest message of "i am praying" is all that is required for us to know that you are standing with us and we are not alone. 


we love you all and are so appreciate of your love and support!

SCHOOL OF HARD KNOCKS

142.5 days
that is the number of days of school that parker missed last year. the year before that (the year he got sick) he only made it a handful of times.


clearly, that is no way to get an education.


i have taken over his education and am homeschooling him.
clearly, that is (still) no way to get an education.


i am no teacher.
i am a fish out of water.

this business of full time home schooling is new this year. the public school that he has attended since kindergarten did not have the resources available to support him in the way that he needs to be supported. 


naturally, parker's case is unique. it is not something that the school has encountered before. the hourly fluctuations of his symptoms and the never knowing how he will be makes setting up any sort of structure or schedule pretty difficult.


by last spring, we finally had a plan that seemed to be working well. he was meeting and working with a resource teacher twice a week for 45 minutes each time. his tutor lisa, who has been working with him since he got sick in grade 5, was working with him once a week and liaising with his resource teacher. this was working well and for the most part, despite his insanely fluctuating symptoms, he was able to make it to these sessions. the goal was to keep up his math skills and keep him as involved and part of the school community as possible. the latter was (is) so important to his emotional well being. 

by the end of june (last year), we felt we had hit our stride with this plan. it was working well. it was written into his IEP (individualized education plan) and we were hopeful that this plan would be able to be carried into this year, his grade 7 year, as seamlessly as possible. at the end of june a meeting was set up with the school administration to finalize this plan...or so i thought. 


unfortunately, that did not occur.


to be frank, i left that meeting (end of june) feeling as though we were being pushed out the doors of the school. 

the first 60 minutes of the 90 minute meeting were spent promoting a distant ed program...in ANOTHER school district. i was strongly encouraged to  consider and look into that for parker for this year. on one hand, it did make logical sense to weigh that as an option. a home schooling/distance ed program would provide more continuity and be able to provide some additional resources and support that the public school is just not equipped to deal with HOWEVER, in order to tap into those resources, we would have to travel to the distance ed facility...it is a 2 hour round trip commute from our home. how in the world does that make sense when he struggles to get to his public school which is literally right out our front door? additionally, if we chose to enroll him in the distance ed program he would no longer be able to participate in anything at his school. that sucked. and it seemed grossly unfair. he has already suffered so much loss...now to consider that he could lose his last bit of ties to his peer community was truly upsetting. 


the last 30 minutes of the meeting were spent on going over his IEP. i was told that the two 45 minute sessions had only been done as a special allotment for his unique situation and that it was not possible for them to continue next year. 


if no resource time was available to him, than how would he be educated given his special needs and medical condition?
no one could tell me.


the meeting kept getting steered back to the suggestion of the distance ed/home school option. i was there to problem solve and work toward a solution that would keep him IN HIS school that sits less that 200 feet from our front door. i felt like i was the only one endeavoring to do that. 


i was given no solution and the only help being offered was the vague  statement, "he will be supported by a classroom teacher. there may or may not be an EA in that classroom, EA's are not there for an individual child and there was no resource time available."


to be fair, i believe this is really an administration and district issue. parker has an IEP (individualized education plan) and is designated with a disability within the education system which means the school district is than given funding to provide support for him. however, how the district allocates those funds is at their discretion. technically, this funding should be enough to provide him with some EA support and resource time - however, the funding is given to the individual school as a lump sum. from that lump sum, the support for many students, with varying disabilities, must come from that. there is only so much to go around. i've talked with many other parents from the school who have run into this same brick wall in our school district.  


however, it is what it is. i feel more sad than mad about it and i feel bad for the teachers. their hands are tied. what i choose to focus on is the amazing support we were given over the past 2 years. parker's teacher, EA and resource teacher worked so hard to keep him involved and feeling part of the community. we are so appreciative of this. they came up with creative ways to keep him feeling as if he was still part of the school community even though he was absent most of the time. 

Parker's New Classroom

we were truly blessed by their support and ongoing efforts to keep parker connected to his classroom and classmates. that has played an integral role in keeping up his spirits over the past 2 years. it has been HUGE. the thought of him no longer having that ripped my heart out. added to that, was that this is his grade 7 year. the thought of him MISSING all that encompasses this pivotal year (grade 7 grad, camp and high school tours) not to mention the socializing and student life is hard. he's been at that school since he was in kindergarten. many of his classmates he's known since pre-school.

however, keeping him enrolled in a school that he rarely is able to attend and would have no real formal support at, didn't make a lot of sense either. emotionally, i wanted to keep him there...even the little bit he could go at least allowed him some socializing and a break from the daily regime of pills, IV and survival. yet, logically, sporadic attendance is no way to get an education. i get that. we spent the summer processing all of it and weighing the pros and cons. and of course, hoping that he would make a miraculous recovery and just be well enough to head back to school in the fall. one can hope. always. but the reality is/was that the road to recovery is a marathon not a sprint.


as we mulled it over, our greatest concern was how parker would feel about not being enrolled in his school. he was surpisingly open to the idea of homeschooling. he's a pretty remarkable kid. strong. brave. uncomplaining. resilient. and wanting to learn. and motivated to do so. and willing to let mom become his teacher.


with that, the decision was made.


i am homeschooling.
shoot me now.

parker went into it with great enthusiasm.
i, on the other hand, did not.


i had a bad attitude - my own health can make just everyday tasks challenging and we're barely treading water with the weight of parker's medical needs and now the full weight of his education has been solely placed on my shoulders. 


i felt inept - teaching is NOT my thing. so totally out of my comfort zone. i have always had a healthy respect for teachers. i think they have an incredibly tough job. i don't envy them and i don't want to be them.


i felt overwhelmed - in september, graham met with the teacher and principal from the distant ed schooling program we had signed on with. he came home with 60 pounds of books and a mountain of paperwork. i was unable to attend because i was home, bedridden with fluid on the brain. hardly the way to start my teaching career. 


i felt incapable - there is nothing like a little hydrocephalus to complicate my reticent foray into teaching but that is the way it was.


additionally, i felt stressed out. beyond help. lost. confused. dazed. panicked. helpless. crazed. terrified. woefully ill-equipped.


enter lisa.
i would have had a nervous breakdown if it wasn't for lisa
God bless lisa

lisa & parker, oct 2009

lisa has been tutoring parker for the past 2 years.
and
has been an absolute God send


we met lisa at one of the first lyme support group meetings we went to - way back in the early days, before the boys got sick, when it was just me starting treatment. those days are pretty clouded and i don't have a lot of memories of them. like i don't remember meeting lisa. (sorry, lisa, you know i love you and you are totally un-forgettable)


we had only managed to stay in sporadic contact in the years since we had first met - both of us consumed with surviving the early days years of treatment. lisa has lyme too. she is also a patient of DR H. i had no idea that lisa read my blog. 2 years ago, when parker fell ill and was no longer able to attend school i blogged about how concerned i was about his education. imagine my surprise then, when i got an email from lisa in response to that. in her email she offered to come once a week to tutor parker. (prior to falling ill with lyme herself, she worked as a full time teacher) we were blown away by her offer. here was someone, sick herself, who was willing to volunteer her time and sacrifice her limited energy to support us? it was mind blowing. but that is exactly what she did and has done for the past 2 years now. she continues to come every week - despite the fact that she lives nearly an hour away from us and is battling this disease herself. 


like i said, she is a GOD send. 

parker & lisa, nov 2011

additionally, she could not be a better fit for parker. lisa has lyme. lisa has bartonella. lisa has been to hell and back with bartonella. lisa gets the disease. lisa gets parker. 


like i said, lisa is a GOD send.


and poor lisa, probably had no idea what she was really getting herself into when she first sent that email 2 long years ago....like how tutoring would morph into the added job of consistently peeling the mother of the student off the ceiling. like how said mother would NEED almost as much MORE support than the student. 


i had NO IDEA what to do with the 60lbs of text books and work books that the distance ed program sent home to us. i had to fight the urge to burn it all. it would have made a spectacular blaze.


i had NO IDEA how to organize the curriculum.


i had NO IDEA where to start...except to dumbfoundly sit and stare at it all.


it would be safe to say, that i would probably still be sitting here blankly staring into air trying to squelch that burning desire (ha ha) if it weren't for lisa.


at the end of september, she came over and spent 4 HOURS formulating a teaching plan for me. using a whiteboard, she mapped out the curriculum into a weekly plan.


whenever i see that white board, i hear angels sing.

hallelujah, hallelujah, ha-lle-luuuuu-jahhhh!

it has saved my sanity.
and so have lisa's once a week therapy tutoring sessions.


term 1 just wrapped up.
and
shockingly, not only have we survived...but parker has thrived.

Parker's Research Project on my dad's dad

yesterday, we had a big meeting with his distance ed teacher. she was amazed at how much parker had accomplished. i concur. he decided to tackle all four of the core subjects. math. science. language arts. social studies. he successfully completed the (adapted) course work. 

he has done more work in the past 3 months than he has done in the past 2 years. yes, some of this can be attributed to the fact that he is making some progress in his health fight - primarily brain cognition - however, a lot of it has to do with his sheer determination. there have been many, many days where he has been lying on the couch in agony, on a heating pad, pumped full of morphine and STILL did his work.


he has made me look good. 
and
i've learned a lot.



life has handed us some tough blows.
lyme has taught us some tough lessons.
it's landed us squarely (and at times, flat on our backs) in the school of hard knocks

i can do this. 
we can do this.
we are doing this.


i'd even assert that we've had some fun along the way. it's good. it's been really hard but it's been really good too. i still have my "i can't do this" moments (every week) but then i see that white board, i hear angels sing, "yes, you can!"


thank you God for lisa.