So, at the outset, let me state that I am a Q Agnostic. I believe that there is “something” called Q but what/who Exactly it is remains a mystery. Because aspects of the “Q-drops” are admittedly “dis-information” I Personally Do Not Choose to Follow Q nor to believe the drops have the authority of the Bible! However, as best as I can piece together Q appears to be a force for good in the world.
Q is likely good because it references Biblical Truth & regularly encourages people to Pray & to Put on the Armour of God. It occasionally provides scripture references, I believe. Q also encourages people to Do Their Own Research, to become informed about topics that Q shares. While Q displays contempt or hostility (righteous anger?) toward the Deep State & Black Hat players on the national & international stage it also maintains a protective stance toward the masses of the people. Q appears to have a godly warrior vibe, like the battle hardened hero who might be rough around the edges in language & actions, deadly to the enemy, & willing to lay down his life for the vulnerable & those he’s tasked with protecting.
There are Many people around the world who are on the Q bandwagon. Many are associated with enthusiasm for US President Donald Trump & his MAGA/KMAG/KAG (Make America Great Again/Keep Making America Great/Keep America Great) philosophy. Many of these people are Christians but I don’t even know if it would be accurate to say that the majority of them are Believers. Most Q enthusiasts, as best I can tell, appear to desire Truth, Justice, & the American Way–including fairness & justice across societies & nations beyond the US. Many of these people have slowly gotten on board the Trump Train &/or the Q-niverse, often coming from a diametrically opposed perspective. Once becoming a Trumpist &/or Q-enthusiast there appears to be no turning back.
Quite a few people reference taking the “red pill”, like from the movie The Matrix, where the character Neo (played by Keanu Reeves) chooses to swallow the red pill to learn what The Matrix is since Morpheus (played by Samuel L. Jackson) says no one can be told what it is, they must see it for themselves. The alternative blue pill is also offered where Neo can go back to sleep & wake up & believe whatever he wants about his adventures. So being “red-pilled” is akin to waking up & discovering the Real World, & it is vastly different from the Dream World of the Matrix. Being Awoken means becoming aware of the War that is going on, the battle for the freedom & deliverance of mankind from the evil forces that keep most people enslaved & asleep…
Anyway, the Q-Tree, or more accurately Wolfmoon’s Q-Treehouse, which can be found here: wqth.wordpress.com is a derivative site from the Conservative Treehouse. Many people at the Q-Tree used to be part of the CTH community, often for many years. Sundance, who runs the CTH blog, began to become less & less comfortable &/or tolerant of discussions of the Q phenomenon at CTH. Eventually discussion of Q was virtually banned altogether at CTH. Wolfmoon chose to develop the Q-Tree as a place where CTH refugees, who also enjoyed following &/or discussion of Q & the issues of the day, could hang out in a CTH style atmosphere without the draconian speech restrictions.
I learned of the Q-Tree through a series of interactions related to the death & dying process of a long-time Treeper who was known as Patrick Henry Censored. PHC ended up being banned from CTH at a time when he was in the fading process from this life. He had been a mighty force among many at CTH & so he started a blog to allow his CTH (& other online) “friends” to encourage him & each other as he was nearing the end of life. One of those encouragers told me of the Q-Tree & Wolfmoon let me into the pack!
Anyway, people that hang out at the Q-Tree are a pretty amazing bunch. They come from all walks of life & from across the US, primarily, but from other nations too. There is pretty much ubiquitous patriotism, love & support of President Trump, highly insightful & logical reasoning skills, conservative values, foundations of faith, & playful & even irreverent senses of humor. I am very honored to be included in this Wolf Pack as my background & skill sets make me one of the least likely members of this collection of culture warriors…
So there is good, often great, material to be found in practically Every Post at the Q-Tree & in the vast majority of comments. There is Never Enough Time to do justice to the wealth of material presented! Lately, since Q has been in “mainstream” news more recently, there have been some overt discussions of Q at the Q-Tree. I wanted to capture some of the great material in the Q-Tree corner of the Q-niverse in case it can be of benefit to others & so that I might refer back to some of these materials for further self-education. I hope you might be blessed in some of this material too!
Today I ran across some great stuff here & watched the excellent video below:
After watching the above video at the Q-Tree I went to the YouTube site to get more info. The comments below were at YouTube & offer further helpful stuff that might assist me (& you) in our further journeys in & around the Q-niverse! Here is the YouTube link:
Was q formed before the assassination of Kennedy, do you think?! Because he knew he was going to get assassinated! When I was really small I had loads of dreams about his muder.. my mum actually took me to the doctors and thought I was mad!
You are correct.QThe Q operation was started by JFK because the deep state/CIA was actually running the country. He was assassinated for trying to expose them but the operation continued.
Trump is the second coming of JFK to finish the job and drain the swamp.
Q is a group of US military generals.
The Q operation is a whitehouse information dissemination operation to bypass the CIA controlled liberal fake news media, and red pill the masses to create a grassroots movement.
You might have heard of “Q Anon”. Trump and the US military generals run this Q Truth psyop starting in October 2017.Q drops are posts are on qmap.pub.
There are many youtuber channels that decode Q drops like X22 Report and Praying Medic.
Please watch these links for hope, positivity, and reassurance that Trump and the Patriots are in control – not just of America – but the entire world with a white hat alliance to drain the worldwide satanic cult of child traffickers, child sacrificers, and blood (Adrenochrome) drinkers.
If you complete this list of videos for homework – you will be completely red pilled. Trump 2Q2Q! WWG1WGA! Trump will finish what JFK started!And is the modern day Christ Figure (figuratively speaking) for taking all the hits for humanity (hatred, negativity, lies, slings and arrows, character assassination, real assassination attempts, Russian collusion investigation hoax, Ukraine impeachment hoax, taking all the blame for everything) to save all the children from human trafficking and rid the Earth of the parasitic illuminati satanists.
GudThoughts above was referencing a previous discussion about good sources of material about Q to share for “red pilling” purposes. I’ll see if I can find that & share it below too…
Well, finding that conversation is going to take more digging so I’ll post this stuff “as is” & come back to it & add the other stuff later…assuming I can find what I’m looking for!
I ran across, & participated in, an interesting conversation at WolfMoon’s Q TreeHouse on the Jury system in America. There is some great historical info within…so I’m sharing it here. Please take the time to read through & add your thoughts in the comments below if you’d like to expand the conversation.
Here is where you can find the beginning of this conversation:
Well thanks for stopping by. I hope this conversation kindles an interest in learning more about our nation’s founding & the profound thoughts & insights of those who bequeathed us the greatest nation on earth (warts & all). We have a Judeo-Christian moral foundation & an English Common Law legal foundation & these foundation stones are those upon which a strong nation-state can be built.
The below quote is not from a relative, that we are aware of 😉
Today is officially the Seventh Anniversary of my son Josiah’s Liver Transplant, which happened 7-30-2013. It’s been a strange couple of months leading up to this year’s anniversary so my “anniversary” post will take a different perspective than some of those prior anniversary posts have done (links to previous posts at bottom).
Where to begin…I’m going to copy/paste some stuff from other locations, mostly Caring Bridge, to give updates & a flavor of the journey. I’ll (usually) put the copy stuff in italics so please scroll by if you don’t want All those details, also I’m putting the current writing in purple to ease the reading of this post 🙂 This post’s name comes from all the scratching & itchiness Josiah experienced with the excess bilirubin in his system. That symptom finally calmed down after a couple of days in the hospital, thankfully…
We’ve had some challenges with getting Josiah’s meds. Some of the hassle goes back to an insurance change for 2019 that led ultimately to some cascading concerns that developed over time. Here’s where I spoke/wrote about it at Caring Bridge:
Journal entry by Valerie CURREN —
It’s been pretty hectic trying to get Josiah’s medication situation taken care of for the last month plus. We underwent an insurance change December 1st that has left me “scrambling” to get his meds on track. We’d been “spoiled” since his Transplant by having almost all meds shipped to us on a monthly basis from U of M’s Transplant Pharmacy, with just a monthly refill phone call needed.
The new insurance requires that we get his anti-rejection med, Prograf/tacrolimis, from a mail order pharmacy called Briova. Of all his meds Prograf is the only one they handle. Because of having to get Prograf from Briova we can no longer get the other meds from the Transplant Pharmacy. So, we have jumped through multiple hoops to get his other meds established at the local pharmacy, where we’ve gotten his behavioral meds for like a decade & a half.
Some of his meds were previously provided in 3 month supplies. The local pharmacy, at least as required by our new insurance, can only dispense these meds on a monthly basis. We just picked up the first round of meds from them for January. The ones that aren’t yet ready for refill are, at least on paper (or more accurately in the computer), theoretically set up to get filled in the corresponding months, 2 starting in February, & the final additional one in March.
We received one shipment of the Prograf last month without incident & are on track to get another shipment next week. The local pharmacy has put all the meds, except behavioral which is exempted, on an “auto-refill” parameter, which is new for us. Hopefully this will ultimately go off without a hitch. It’s been very hectic between numerous phone calls, literal hours on hold &/or in stressful conversations, & much upheaval in trying to get the various sources to get the coverage in place with the new insurance & with Medicaid.
Hopefully all this effort will ultimately pay off with a smooth process going forward…but that remains to be seen. I guess at this point we are slightly more than half-way there!
Being cut off from using the Transplant Pharmacy was certainly Much less convenient in the process of getting Josiah’s meds. It ultimately became actually more dangerous when we ran into difficulties obtaining his 1mg Prograf/Tacrolimus anti-rejection med earlier this year…
Well, working forward in time I discovered a med hiccup last year I’d completely forgotten about…yikes…
Some Prayer Needs–March 9, 2019
Journal entry by Valerie CURREN —
Please pray for my son Josiah to not have Any Liver Rejection complications. I was refilling his pillbox last night, something I do every two weeks, when I discovered that I’d given him the wrong dosage of his anti-rejection med, Prograf/Tacrolimis, during the last refill. He’s supposed to get 1.5mg in the AM & 1.0mg in the PM, but I had inadvertently given him 0.5mg in the PM for these past two weeks…He currently takes 13 pills a day–yikes!
He was supposed to get a blood draw in February, they still want these blood draws every 2 months, & I planned to do it at last month’s scheduled hospital/clinic appointment (I prefer U of M’s labs to the local ones so use them whenever feasible/coinciding with scheduled clinic visits). Well we ended up rescheduling that appointment, due to bad road conditions, to this coming Tuesday so that’s when we’ll get his blood checked.
Please pray that if there are Any rejection issues that they will be revealed in Tuesday’s blood draw. It has been 5 1/2 years since his Liver Transplant & he has thus far has Zero rejection incidents–Praise the Lord! He has been fighting a bit of a cold, something he faces seasonally, especially since the transplant, but overall his health seems “fine”/”typical” (for him!)
So in spite of my med errors referenced above it appeared from labs that things were still OK, thankfully…at least then…
March 14, 2019 Lab Report
Journal entry by Valerie CURREN —
Good News. We heard from Liver Transplant about his recent blood draw & All of Josiah’s liver numbers look great! He did have an elevated white count so they want us to see his PCP if he develops some type of illness. Ever since his transplant he’s had nearly constant sinus issues (the docs claim that’s unrelated to transplant, but only God knows). I wonder if he may have picked something up from Brandon who was pretty sick after getting his travel vaccines. I never asked B if any of the vaccines were of “live viruses” for I think we’re not supposed to expose J to them, if possible.
I’m just thankful that my med refill faux pas didn’t appear to have any lasting negative impact on Josiah. Perhaps this data could be applied in encouraging his Liver doc to consider J going on the weaning off anti-rejection drugs protocol. The Nephrologist would like to see his Prograf reduced or eliminated since it’s so hard on his kidneys. Managing J’s medical needs is quite the balancing act!
Thanks for your prayers on his behalf! You all bless us so much!!!
Appointment, med, & even Liver Transplant Clinic challenges continued…some info:
January 24, 2020 Today’s Liver Transplant Clinic…& catching up a bit
Journal entry by Valerie CURREN —
Hello dear readers & Prayer Warriors,
Josiah & I are (finally) back at the U of M Hospital to attend a long overdue Liver Transplant Clinic appointment. I overlooked an appointment last April & this was the first time we could actually get scheduled (barring a Christmas Eve one that I nixed). He’s supposed to be seen every 6 months, so that was a pretty big oops!
Thankfully, Josiah’s doing very well. The bloodwork info from today’s visit wasn’t yet available but based on previous blood draws his liver numbers look fine. His Tacro/Prograf tended to run on the low side so they are not likely to reduce his dosage at this point.
Apparently the generic forms of Prograf are becoming increasingly difficult to source as a component ingredient is in short supply in the US & it’s possible they’ll need to place Josiah on a different anti-rejection medicine in the future. The one they discussed would likely be a once a day formulation of around 1mg (he currently takes 1.5mg AM & 1mg PM) so we’ll see how that goes.
At the first of the year we had insurance changes so he is no longer getting the Prograf from the mail order pharmacy. We are to pick up the first dose of Prograf at our local pharmacy today (if all goes well). I didn’t get clear understanding if we could potentially go back to getting almost all his meds from U of M’s Transplant Pharmacy as we’d done before last year’s insurance change. If we could that would simplify the medication refill/acquisition process from my perspective. The Adult Transplant Clinic does NOT coordinate other medications like the peds department did, though didn’t inform us of this difference, so we we had some major medication upheavals this year including Josiah being without his sleep meds for a number of months & having his sleep mightily disturbed. At least he’s finally making some headway on using his CPAP to help him sleep better.
As it is we’re to come back in “6 months”, though the actual appointment is now in September. He’s also supposed to get blood work every 3-4 months. We’ll continue to try to get those blood draws at U of M whenever we are here & probably return to a lab in Dearborn when needed.
Apparently the med challenges were more pervasive than my recall says…hmmm…
May 18, 2020 Quick Tidbits
We’ve still been having challenges in getting all of Josiah’s meds sorted out. I spoke with the pharmacist in person at the drive-through & she said that this CV thing is not nearly as bad as the flu usually is. They stopped having customers sign paperwork upon med pick-up due to CV so I suppose there is the possibility of easier to cover up fraud. Thankfully the doctor’s office finally followed through on some med stuff so was able to get Most pills…
Next up…hospitalization for presumed Rejection (there are numerous details & updates at the Caring Bridge site, URL at bottom):
July 24, 2020 At the Hospital for Josiah’s Liver
Journal entry by Valerie CURREN —
Hello Caring Bridge Prayer Warriors,
Josiah & I are back at U of M on an inpatient basis because he’s having liver problems related to intermittent lack of anti-rejection meds. We were blessed to get a single room so that I can stay with him during this hospitalization. We got here last night & may need to stay for a few days. We’re not sure how things will go as it’s fairly soon in the process, but the nurse that insisted we come in per the doctor’s request, thought we might be here 3-5 days.
So, what happened is that we had some intermittent loss of all anti-rejection/immunosuppressive meds because of difficulty in getting the 1mg Prograf formulation. We were able to tide him over with excess 0.5mg Prograf for a time but eventually both ran out. He went without the meds for some time in early to mid June, had an interim of a slightly lower dose of Prograf while we awaited additional meds & then ran out completely in early/mid July.
We actually had a family hang out time at our older son’s house on Friday July 17 & Nathaniel noticed that there was an orange cast to Josiah’s eyes. Apparently Clarissa had noticed it too on Thursday but forgot to say anything. Neither Michael or I noticed it on our own. We had numerous calls to U of M hospital & the local pharmacy & obtained enough Prograf to get Josiah back on the full dose, but only for 4 days. We spoke with Liver Transplant clinic staff on Monday & Tuesday & they got the prescription for a different med but the pharmacy couldn’t Ever get it. We ended up getting back with the U of M Transplant pharmacy & they shipped more Prograf (which they were still able to get, unlike our local pharmacy) so that Josiah didn’t miss another dose. The nurse wanted new labs (finally, no one in the whole odyssey since the first lapse in meds in June had asked for labs) which we got on Wednesday. Thursday they called back & wanted him in-patient to treat with IV antibiotics & steroids…& we were off to the races…
So Josiah just came home from the hospital a few days ago, this Monday, & is on the upswing from some degree of Rejection of his liver. Apparently this was an “acute” incidence of rejection & not “chronic” so that is good. He’s taking A Lot of meds again, currently 28 pills/day, as they try to calm the liver down. We don’t know how long he’ll be on some of the meds but the steroid that is currently 6 pills/day will go down to 1 pill/day, & even later become a lower dosage pill than the current 10mg dose so in another month & a half or so he should “only” need 23 pills/day. Technically he takes 3 pills a day that are over the counter so his current Prescribed meds are 25/day & to be down to 20/day in early September.
So, this has been a strange interlude in an otherwise mostly unremarkable post-transplant course. We hope to never have another hospitalization nor to need another biopsy, like occurred last Friday, but everything still remains to be seen.
Josiah is in good spirits & our household is returning to what passes for “normal” around here. So this anniversary we really are thankful that Josiah is still with us because according to one of the attending doctors while he was inpatient “we almost lost the liver & Josiah could have died”. This is a very sobering situation to have recently faced & we’re still not completely out of the woods from it. We don’t know if there might be long term ramifications from this bout of rejection…We’d greatly appreciate prayers for Josiah’s continued healing as we continue to walk down the strange & unique path of his personal Liver Transplant Journey…
God Bless You All & thanks for stopping by!
Ever since having this Special Connections blog I’ve done a Transplant Anniversary post so if you might like to dig deeper into Josiah’s Transplant Odyssey here’s how:
~~~~~~~ If anyone’s interested in more details, after we get settled (at the hospital), I’ll be attempting to update his Caring Bridge site here:
Funny, I was planning another “anniversary” post for July 30 & didn’t anticipate to have to weave in the potential rejection issues that appear to be bubbling to the surface now…I guess you just never know what’s coming down the pike. Thankfully we have the Lord to help see us through the rough patches! Well God Bless you guys…
I copied all of the above from here the Caring Bridge Journal entry of
July 26, 2020 Sharing Q-Tree encouragements, 1st Message
but this material above was still a copy/paste from the below original location…
I’m going to copy a lot of other things from Caring Bridge that give a different flavor to the experience we’ve been going through recently, but also reflect some ongoing challenges…
Mama Bear, Bear Cave, &/or Bear Trap:
Losing the Care Pages service, that we used prior to Caring Bridge, was a significant loss of a supportive team of interested & prayerful people. We had less than 10% of the people who’d at least periodically followed Josiah’s Journey at Care Pages move to Caring Bridge. I personally have limited support mechanisms so I felt this loss acutely…
Moving on from CarePages.com
Journal entry by Valerie CURREN —
I’m so thankful to have now found another site where updates about Josiah’s situation & some of our family happenings can reside. It will, however, likely be a bit of a learning curve to make adjustments & learn the new “tricks of the trade”. Thank you for your patience & understanding.
from another Journal entry from the same day:
Since this is a new platform I’m not sure how “interactive” it will end up being for more dialog style communication. I do know that if you write to either Josiah or I at WordPress.com at any of our websites, as long as you are signed in, we’ll get notifications of your communications & can more easily reply.
Here are sites I manage at WordPress.com that will notify me if you write:
Well that’s more material than most of us might feel like tackling, but I wanted to make it easy to find out more about Josiah & our family’s experience managing his complex special needs for anyone who might wander by.
Thanks for your caring & prayerful interest in Josiah’s life. We so appreciate you supporting him & us before that Throne of Grace. Blessings! Valerie
This is truly just keeping it real & sharing part of what being a caregiver for someone with complex special needs can face. I’ll share my journal entry & the 2 comments below it & my replies but try to leave out the extraneous “likes” etc. Mask off warning:
Someone (elsewhere) asked how I’m doing, so I’m sharing my reply…Please pray for me, Thanks…
Journal entry by Valerie CURREN —
I’m sorry you are carrying such a heavy load.
I’m relatively OK. I’m seemingly “stuck” in some type of quasi-PTSD hopelessness loop over not being able to get any positive traction on my son Josiah’s Special Education case. I’m still furious about how they broke the law with impunity & how the legal protections for the vulnerable are twisted into butt-coverage for the bureaucrats…it makes one feel so helpless/hopeless. I did Major work for like a year & a half on Josiah’s Special Education case & when we finally talked with an attorney (after some funding from a family member made such a conversation possible) he basically said “there’s nothing you can do for your son…but I’d really like you to go ahead & be an advocate for other kids”.
I’m not fully ready to concede defeat but am still so burdened by the pain & frustration of it all that it is Very Hard to move forward mentally or emotionally.
My husband wants me to speak with a Counselor but I am skeptical that there is really anyone out there (besides God) who can grasp the magnitude of what we’ve faced historically with our son, it’s ramifications in our lives & for me personally, & I can’t even muster the energy to attempt to contemplate having such (allegedly) therapeutic conversations.
I’m not (obviously) actually very good at “letting things go” & really need the Serenity Prayer conceptually to help with this process. I hate to “give up” but I also hate to see the “system” escape unscathed & have Zero Accountability. It’s also still too bitter & unapproachable to try to advocate for other people’s kids (even if I could muster the energy or find the appropriate avenue to do so) when there is still so much that needs attention in my own son’s life.
These are like those “first world problems” that lefties mock people for. Not the basics of food, clothing, or shelter but more the apex of that Maslow’s Hierarchy of Needs Pyramids proverbial “Self-Actualization” BS arena, I think.
Sometimes I think I’m just too scarred from all the battles to even begin to know how to live in “regular” society. I’m in pseudo-hibernation/cocooning in hope that (eventually) winter will end (my fat stores will melt off!) & I’ll emerge a beautiful butterfly with sufficient energy to pump those superfluous abdominal fluids into those nascent but hopefully beautifully majestic wings & somehow manage to soar above before my brief sojourn planet-side is over!
OK, so it’s very late & I’m expressing my self in verbose flights of fancy…Thanks for asking how I am…I hope you don’t mind my ridiculous reply!
If I may quote you here “I am an emotional basketcase and the pain is brutal and that’s the upside of my grief right now.” I really do relate…
Here’s an abbreviated version of a journal entry including an interaction w/ another special needs parent at a Special Olympics game:
Floor Hockey, etc.
Journal entry by Valerie CURREN —
Josiah has made a decision to attend his Special Olympics Floor Hockey Tournament in Lansing this weekend! It was hard & conflicting for him to decide & he also really wanted to attend the Football Playoff Game with the Allen Park Bull Dogs. He said goodbye to the Junior High kids & doesn’t think he’ll be doing this similar coaching type of work next year because the friend who got him into it isn’t planning to coach next year. He really enjoyed it though!
Michael & I, my mom, Brandon, & B’s friend made it to J’s Floor Hockey game on Tuesday. It was fun for all of us to see him & his team play…and to meet the young lady he really enjoys talking to at Special Olympics & social events. Ironically the team’s Goalie is Blind (at least to some degree)–& the score reflected that!
I ended up sitting near another mom of a kid on the opposing team from “Jo Brighton” (a special needs school/facility that the Director of AP’s Special Ed thought J would attend after HS–long story). It turns out her son & Josiah were classmates in Pre-School & Kindergarten in Allen Park. We’d actually all attended the same ice cream social event at a park back then (not that we recalled each other). Her son & Josiah did not seem to recall each other but maybe they’ll get the chance to renew their acquaintance a bit at states. She initiated trying to find the connection because of Josiah’s name, that she remembered even after like a decade & a half…
The mom & I ended up sharing some Special Ed war stories, etc. & several of the things I shared literally had her jaw dropping. Thankfully for them their trajectory in that domain has/had been much more straightforward than was ours. Her son has Down Syndrome so his issues/needs are (perhaps) less complex than are/have been Josiah’s. I certainly appreciated the understanding & compassion this lady exhibited to me…as well as the hug…
Next week J & I will be meeting with his Case Manager/Supports Coordinator for the monthly face-to-face conversation. We also are scheduled to see his “Primary Care Physician” for what usually ends up being a very thorough & exhausting overview of his needs & systems. Eventually she will have to refer him to another care-giver as she is technically a Pediatrician. Given Michigan’s Special Ed “generosity” of (sometimes) providing services through age 26 I believe this Doctor may carry “kids” up to that time, but I’m not sure. The last time I inquired about it there were no known Doctors that have practices dedicated to the Complex Special Needs individual in adult care, so we are going to be leery when the time comes to leave her Medical Home style-care–as well as her Christian support.
We’ll also likely be getting Josiah’s liver blood tests done this week. Hopefully this time we can actually begin the weaning down process from/off the anti-rejection meds. It would be an ideal time to start this (from my perspective) for we’ll be seeing the Transplant Clinic in a couple of months & they could thoroughly assess how such weaning was impacting Josiah’s liver function & health at that time. Eventually his Transplant care will also shift from Pediatrics to Adult services. It seems that they re-assess the appropriateness of such a transfer of care every (other?) 6 month Liver Transplant Clinic visit. Because of the nature of Josiah’s Developmental Disabilities he still doesn’t function like a “regular” person his age usually does. Hopefully whenever such care transfer occurs the new Provider(s) will be up to the task of caring for his complex needs (& mother!).
Although I don’t anticipate these care changes coming yet it’s always a possibility. Please pray for God’s favor & timing of such (potential) changes & that He would direct our steps so that Josiah can continue to receive excellent care & the “totality” of his myriad needs can be addressed, at least to some degree.
Thank you, again, for your prayerful care of our family & in particular Josiah. God Bless!
Betty Hogan|Nov 11, 2017
So glad for the update as I continue to pray for each one of your family every day and your concerns and praises help me in praying. I continue to be delighted that Josiah is enjoying Special Olympics as it has meant so much to my Willie. Much Love to all from Betty.
Here’s some more info about the liver, Special Olympics, family, & challenges, abbreviated–thankfully 😉 :
Floor Hockey Tournament, etc.
Journal entry by Valerie CURREN —
Well, Josiah came home yesterday following Floor Hockey & he was Very Excited. His team, The Tsunami’s, won the Gold Medal for their 4 team division! He ended up scoring the final goal of the game, a game clinching shot to lead his team to Victory 16-14 over their opponents. He said this was his first “official” goal during an actual game (vs a scrimmage) for the entire season. He thought when the ref blew the whistle that he’d gotten a penalty instead of a goal so was thrilled when the crowd erupted in cheers at his score. He used some of the money we’d sent with him to buy a T-shirt commemorating the Tournament event & along the back of the shirt it has the names of all the participants (in very small print) for each region of Special Olympians.
He also ended up having some special times with the Lord while he was away. At one point, in thankfulness, he snuck away alone to worship & pray & was moved to tears in his brief time with the Lord (he’s so Tenderhearted in that area!). He & one of his roommates ended up watching some Sunday worship/preaching/church TV & being blessed. He also had some short conversations with a couple of teammates about the Lord, & it appears that there are several Christians amongst his colleagues! He’d forgotten to take his Bible so found the Gideon Bible in the hotel room but didn’t prefer to use it because it was a translation he wasn’t familiar with so hopefully “next time” he’ll take his Sword!
His Basketball Season with Special Olympics starts this evening with their first practice. His Respite/Community Living Supports workers will be juggling scheduling so that the guy, Hamzah, will usually be involved on the Basketball days. So far the new girl, Colleen, seems to be working out well for Josiah here too! Please continue to pray for Josiah’s Christian Witness to these workers & beyond!
We met with his Supports Coordinator/Case Manager, Brittany, this afternoon. For some reason some aspects of our historical battle with the Special Education Case came up again. This lead to a wide ranging discussion of where we’ve been, where we are, & where we Might be going. Josiah, thankfully, only got partially revved up here, but just wading through that muck at all is still draining (at least to me)…When we see Brittany next month it will be time to complete some type of Health Assessment so we set that appointment for after the Cardiology visit so that in the event his Heart Needs require further intervention we’ll be able to put that info into the mix.
Thursday should be a busy day for us with Josiah’s blood draw in the morning & that Doctor’s visit in the later afternoon. In the interim there is a “Book Club” meeting at our local library I May attend. I’ve never actually been to a Book Club event in my life & “randomly” grabbed a flyer for this one & managed to get through the book in time. Ironically, or perhaps providentially, this ended up being a Christian novel…so perhaps pray for me that I can muster the energy to attend this event & possibly “fellowship” with the other readers…we’ll see.
Late Thursday Josiah & Brandon are planning to head Up North to the Hunting Shack for Rifle Deer Hunting Season. As I wrote previously there will be A Lot of comings & goings to that region of Oscoda County in the next few weeks. Please pray for health, safety, & fellowship with family & friends, & especially with the Lord while the Hunters pit their wits, skills, endurance, & “luck” against the elusive Northern White Tail Deer. Josiah always Loves to get up to The Shack even if he is not (yet???) a hunter. Michael plans to head up Friday or Saturday as does his friend Pete & eventually 2 or 3 of his sons. My Dad & his long time hunting friend Clyde are already there & my brother Mike is heading up this weekend too…I Can’t Wait for all the Fun Tales. This chance to get back to nature & simpler times (one room, tar paper, hand pump for water, & outhouse facilities) is a vital aspect of our family’s fall into winter season every year. Each time the hunters return they’ve always left a bit of their heart Up North & need some adjustment time to re-assimilate. I’m so thankful that this Heritage of Love for Hunting has been passed down for 3/4 of a century & more! Michael has said that Hunting Season is his favorite time of year!
So thank you for sharing a bit of our journey & for your (continued) prayer covering for Josiah & our family. May the Lord continue to supply All of your needs according to His riches in Glory, in Christ Jesus!
Valerie CURREN|Nov 13, 2017
I wanted to add that listening to the Fun Hunting Tales is a tradition that takes me back to my childhood…but apparently there is No Edit Button here…so I’ll add that thought as a comment instead. Getting back to those Campfire Tales is part of the essence of masculinity in my extended family clan. Those story-telling skills seem to be getting lost in the sound-bite, text-speak version of “communication” that is becoming so pervasive in the West. I’m thankful that my husband & kids get multiple opportunities to hone those skills at both Hunting Camp & on the Home Front! Apparently “Cave Man” Culture will continue to be perpetuated, & celebrated, here!
I couldn’t figure out how to edit the post above so added the below comment & chose not to revise things (sometimes I think it’s important to leave things “as is” so we can learn from the process).
One of the things I’ve really wrestled with is how to thank the donor family for Josiah’s liver. You’d think that would be straightforward but it’s not, at least not for me…
Indirect Thankfulness, a Semi-Trial Balloon…
Journal entry by Valerie CURREN —
One of my “plans” in the coming year is to attempt a expressing thankfulness contact with Josiah’s organ donor family, in particular it is my hope to make that initial contact before the 5th anniversary of his Transplant on July 30.
To that end, from a research/gearing up perspective, I was searching amongst this CaringBridge website to see if there might be other stories that could shed light on that process for me/us. This platform doesn’t make it easy to find others going through “similar” journeys as the searches basically just lead to names or site titles, not medical conditions or other key words…
Anyway I “randomly” found a CaringBridge site created by another family who ultimately ended up donating organs & tissues from their daughter/sister after she was severely injured in a car accident. This organ donation occurred in the same year that Josiah received his Liver, in 2013, but occurred in March & the recipients were in Wisconsin & Washington, so this is definitely Not the donor of Josiah’s new liver.
Anyway, I just wrote to their site & wanted to share that (likely one-way) communication here. Please pray for me/us as we approach that artificial deadline so that we can be “ready”, godly, & appropriate whenever we do finally attempt to reach out to Josiah’s Donor Family. This potential contact is something that has historically weighed heavily on my heart, especially since I don’t want our story to cause them further pain.
Prior to Josiah receiving the Liver the Transplant team told us that in some states they wouldn’t have even listed Josiah for transplant because of his other special needs, like there is some inherent discrimination within the organ procurement/distribution system against certain special needs in some locales. This info has made me even more leery of making contact with the donor family & potentially finding them to be offended or otherwise because of Josiah’s other challenges…a complication for an already complex internal process (at least for me)…
Anyway, reading the other side of the story, from the perspective of this particular donor family & what they went through prior to organ donation, is helpful to me in gaining insight about this whole process…In case you might be interested in the other family’s experience here is their site:
I also previously wrote about that aspect of the transplant journey in response to an article on multiple recipients thanking a donor family here, since it can actually take me quite a while to prepare to do something that I anticipate to be emotionally/mentally draining:
Finally, here is a copy of what I wrote to Jessica’s family. If you might have some constructive insight about this process & how to approach Josiah’s donor family, especially based on the test contact with another family below, I would definitely appreciate your prayerful input. I chose to include some of the “God-language” below because within the CareBridge site about Jessica it appeared that her family had some degree of faith-based, seemingly Christian, heritage. Even though I/we know that the Lord is the ultimate source of all Comfort & Healing, in the process of contacting Josiah’s donor family until having insight on their faith experience I would likely “tone down” that aspect of my writing style.
It is my hope that we may get to wrestle a bit with this contact issue & complexity at Josiah’s next Liver Transplant Clinic visit in January & then again in July before the “deadline” hits. Hopefully we can interface with the Social Worker &/or Psychologist and even someone on the Spiritual Care team in the hospital to “process” some aspects of what we are facing before attempting the actual contact, God Willing…
Thanks for continuing to support our convoluted journey with prayer & encouragement. We greatly appreciate this support!
“Dear Oliver Family,
Thank you for sharing Jessica’s end-of-life & Life-Giving story here on CaringBridge. Also, I wanted to say Thank You for giving the Gift of Life to others even while your family was encountering unimaginable grief.
My son was a Liver Transplant recipient the same year that Jessica (& your family) gave that priceless gift to others. He was transplanted in July of 2013 in Michigan, & we are so grateful that another grieving family also chose to give that magnificent gift even in the midst of many sorrows.
I haven’t yet mustered the fortitude to contact “our” donor family, but wanted to extend thanks to your family for being part of that wider group of grieving families that found a way to give life even while traversing the Valley of the Shadow of Death.
May the God of All Comfort continue to minister to you & your family & may He provide solace & peace for your souls as you each continue on your own personal journeys in this life before that day when you will see Him face to face & be reunited with your beloved Jessica.
In Christ & in Gratitude for the Gift of Life… Valerie Curren
I don’t know if any of you will ever see this posting, but if you do I would value your input on communications between Transplant Donor families & Transplant Recipient families. I was surprised to read what info was shared with you from the organ procurement organization & actually wondered if you had heard from any of Jessica’s Transplant Recipients (or their families).
I’ve been concerned about the way we might approach my son’s donor family & not wanting any aspect of that contact to cause them further pain…I guess no matter which side you view Transplant from it is a complex, fragile, & painful journey. May the Lord continue to ease your loss & renew your memories of your dearly beloved Jessica!”
Betty Hogan|Nov 15, 2017
Read with interest and prayer. Love, Betty
I’m not sure how abbreviated this next one will be. I’m tending to leave in stuff that points to some of the stress factors that have impacted me, since this is under the Mama Bear heading…hmmm we’ll see, for frankly I cannot even fully read this material I’m copying/pasting without upping my stress level to some degree…
Journal entry by Valerie CURREN —
Yesterday was a very busy day. We got Josiah’s blood drawn in the morning, shared lunch out, did the Library Run (including my inaugural Book Club Meeting), had the Doctor’s Appointment, Josiah & Brandon left for Hunting Camp, & I stayed up late finishing his SSI Medical Re-determination paperwork so Michael could copy it before heading out of town, as it’s due before his return.
As far as the Liver Blood work goes, please pray that Josiah’s numbers look good & that we can finally begin the weaning down process from anti-rejection meds. At the last Transplant Clinic visit they had said we could start that process at the next blood draw time, assuming the numbers looked OK, but it didn’t happen then. We see the Transplant Team in mid-January so (in my mind) starting the weaning process “now” would be ideal, as in there is to be face-to-face contact (we’re usually in clinic now every 6 months) in the short-term so if there are Any issues with the weaning down process we could be more likely to address them in such a visit…
Josiah was frustrated & even angry/aggressive before the Library Run was over yesterday. He had ample time to make personal book & movie choices while I was in the meeting (& he Didn’t Interrupt us!). He managed to calm down pretty quickly when I spoke with him, thankfully, but it is still disappointing & frustrating that he can so easily go into his anger mode over things that seem not that big of a deal.
The Book Club appeared to be populated by Christians for the most part. Apparently the group provides feedback on books they are interested in reading & discussing but the actual choices depend on many factors at a given time that the Facilitating Librarian has to manage. It looks like they meet on a monthly basis & on Thursdays, which is my typical Library Day. It’s not clear if I’ll go back or not, partially due to transportation challenges, but I did get next month’s book so we’ll see.
We were at the Doctor’s Visit for quite a few hours & most of that time was spent with staff. This particular Doctor has a practice devoted to kids & families with Special Needs, called The Center for Exceptional Families. She indicated again that Josiah is the most medically complex child/patient she has ever had…sigh…& I agree with that perspective…
This Doctor is a strong Christian & shared some of her vision for where she hopes to see Josiah’s life going. She’d like to see him get into some type of work scenario, comparable to a first job for a high-schooler or collegiate. She recognizes that he’ll probably need a job coach or other assistance for a while. She’d love to see him be able to work in some type of Christian ministry or church capacity. Previously she’d suggested that he could benefit from taking “Bible College” courses.
She wanted to steer us away from getting too plugged-in to the “Disability Community”. In her mind getting Josiah set up in some type of program aimed at the disabled, like for job-training/prep would likely be less beneficial for Josiah. She referenced the “brokenness” of the Adult Services Industry for people with Special Needs. It appears if we are to act upon her recommendations/insights that the process moving forward is going to be more complicated & less straightforward than if we just keep jumping through hoops that the Case Manager/Supports Coordinator presents to us. Please pray for these steps, for the Lord to open doors before us, & to clearly close doors we shouldn’t go through.
In the same vein, please pray for the processing of the renewal of Josiah’s SSI paperwork. He has been on SSI (Supplemental Security Income) for nearly his entire life (there was a brief gap in his teen years). This is government Disability Income with the added safety net of Medicaid health insurance & recently Food Stamp benefits. These financial provisions have gone a long way to helping care for many of Josiah’s needs. In particular Medicaid has enabled his access to significant medical services by covering the co-pays & deductibles required by our primary care insurance. This has ensured us never making a purely financial decision about whether or not to get medical care for him (we make such “no” choices for the rest of the family with regularity, unfortunately).
Assuming Josiah continues to qualify for SSI, etc, there is a degree of “peace of mind” that goes with that “provision”. It still appears unlikely that Josiah would ever be able to fully support himself independently so having SSI & Medicaid particularly seem key to helping him not be too much of a financial burden on our family currently & going forward & ensuring his ongoing access to medical care (I always choose providers for him that take Medicaid). However, it is possible that God has other plans to provide for Josiah. So please pray for God’s Will to be done in this SSI re-determination. From my human perspective that means asking for such coverage to continue…but God may have better & bigger plans. Pray that the Lord would help us through the process & to guide & direct Josiah’s footsteps & the path our family (usually me if we’re being honest) needs to tread to help get him to the next destination along the way.
The twins got underway well past rush hour so may not have arrived at hunting camp until around Midnight (actually about 11 per a phone call from Michael just now). Brandon was excited to have to manage “The Luzerne Hilton” (a name on that building when my dad & his hunting buddy Clyde acquired it a few years ago) by himself for a day or so. Of course Dad, Clyde, my brother Mike, his son Isaiah, his potential future son-in-law Joel, & a couple of Clyde’s buddies will be just down the hill at The Shack should any needs arise.
Michael is planning to head up tomorrow early & his friend Pete & like 3 of Pete’s sons in a couple different cars on different schedules also plan to be at The Hilton this weekend & some through much of the week. Basically both hunting cabins are going to be quite full with many comings & goings.
Please pray for continued safety for all the hunters & all the traveling. Our guys usually have great encounters with the Lord up there in the North Woods, so pray for the enhancement of their walks with Christ & for their Christian Fellowship too.
Josiah has expressed interest in learning to hunt some day. He’s had some exposure to weaponry with intense supervision up there, like with some of the target shooting that can happen. Michael & I recently saw an episode of Michigan Outdoors where a disabled hunter (he’d been blinded in a hunting accident while an adolescent) was enabled to hunt through the direct assistance of family/friends. It made me ask Michael if it Might be possible for Josiah to experience some type of Supported Hunt…This would mean reviewing the DNR rules, getting Josiah through Hunter’s Safety, & getting commitments from family members willing to curtail their own hunting endeavors in order to facilitate Josiah’s hunting adventure, at least periodically. Basically even if it Might be doable it would also end up being a Huge Sacrifice on the part of Anyone who might be supporting Josiah in the hunt. Please pray for this process, research, decision-making, & God’s guidance here. It seems like a pretty big stretch to even Consider the possibility of Josiah actually hunting & not just getting to be in hunting camp and participate in the hunt vicariously.
Well, again, this ended up being longer & more detailed than I’d hoped. Thanks for continuing to lift up Josiah & our family to that Throne of Grace.
God’s Blessings on YOU, & for a Joyous Thanksgiving Celebration too!
I decided to leave the above update in its entirety since it reflects aspects of what we take into consideration in managing Josiah’s needs, even trips to the hunting shack & whether he can be prepped for supervised hunting (something that actually still has never happened)….Ironically I just noticed I had a draft “reflections on Thankfulness” post that never was completed. When I started it there were all sorts of ideas swirling in my head & so much to be thankful for, but when I finally got back to considering it all the creativity was gone so it sits there as a husk of hopefulness (more reflective of some aspects of my life than I’d care to admit)…
Even though this is a Liver Transplant anniversary post it doesn’t mean other aspects of Josiah’s needs are ignorable. Here is the main part of the cardiology visit journal entry, at least the part that’s most about Josiah:
12-12-17 Cardiology Visit
Journal entry by Valerie CURREN —
Dear Prayer Warriors,
Thank you so much for praying for Josiah’s Cardiology visit today. Things went very well! We had a late start & significant traffic problems but were still able to be seen even though we got to the hospital well after our scheduled time (as was an apparent trend today per staff). Josiah had an Echocardiogram & an EKG & then was seen by the Pediatric Cardiology Fellow & then his regular Pediatric Cardiologist.
Basically his heart is doing very well overall and the Echo is nearly unchanged from the last one 2 years ago so we don’t need another Echo for Two More Years! The Doctor wants to see him back in a year for an EKG & visit but he could have been pushed to put off the visit for 2 years too.
I told the Fellow that I wanted to discuss the implications of the Bubble Study done during the Liver Transplant hospitalization & that was something we thoroughly discussed later with the main doctor. Basically the Bubble Study was done because there were significantly different blood oxygenation numbers found from two different sites on Josiah’s body post-transplant. They injected a bubble of air & watched it pass through his heart & discovered a “Right to Left Venous Shunt”. I’d wanted to learn more about the oxygenation issues & whether the shunting should be corrected to (potentially) facilitate further improvement in Josiah’s developmental, etc, issues…Some of these thoughts grew out of commercials I’ve heard for Hyperbaric Oxygen Treatment that has been shown to contribute to significant improvement for numerous conditions, including Autism…
Anyway the Doctor thought the initial reason for that Bubble Study may have been in error because there has been no (that he knows of) evidence of inadequate oxygenation for Josiah, including readings from pulse oxymeters and bloodwork, I believe. He said that there is often blood vessel shunting in the Pulmonary blood vessel region that can be associated with Liver Disease, & they don’t know why this can occur. It is possible that now that Josiah’s Liver is functioning pretty normally that such shunting may disappear on its own. Basically there is nothing to worry about here so he’s not at all concerned.
He showed us some images, both still & video, from the Echo & explained much of what was in view. There is some Aortic Valve Insufficiency that shows up as a blue jet (like a blue flame, ironically) of some blood back-flowing from the aorta back into the Left Ventricle. There is also still the “Trabeculation”, fingers of tissue growing inwardly into the Left Ventricle. He expounded on this tissue abnormality & said that it is often seen with Congenital Heart Defects & may represent a way in which the Heart Muscle itself did not do a normal “knitting together” & smoothing out. It is likely that Josiah has always had some degree of this trabeculation, though older imaging studies may not have been as refined as currently so couldn’t have detected it. Also during his Heart Surgeries they apparently don’t normally do anything to image the internal structures of the heart while it is stopped & emptied of blood while on bypass…
The bottom line is his heart situation is basically pretty stable & doing quite well. Surgery, if & when it becomes necessary, is likely quite a few years away, still hopefully more than a decade!!!
We talked a bit about the changing nature of Medicine & his Fellow’s/Colleague’s background coming from General Medicine & Internal Medicine & now specializing in Congenital Heart. We had been told years ago that Josiah would always see a Pediatric Cardiologist as Adult Cardiologists don’t know about the Birth Defect scenarios. Apparently the Congenital Heart arena is changing in that there are now certifications for Congenital Heart for Adults–Grown-Ups with Birth-Defect Heart Issues, something that’s developed in the last two years.
This lead us to discussing the idea of Medical Home & Family Centered Care & the possibility that sometime down the road there may be certain providers that May be more equipped to care for Adults that have issues carrying over from childhood, even including Developmental Needs. This was exciting enough news for me that I told him that if he knew of committees/discussion groups that seek input from family members that I would like to be considered & he will add me to his list. Apparently these are new avenues that medicine is branching out into & I think that our wide-ranging experience with medical needs in multiple domains could benefit certain key discussions.
Josiah was not feeling well unfortunately, he has a cough & had a fever yesterday, so he was pretty low-key. He did engage the Ultrasound Technician during his Echocardiogram with some questions about what was showing on the screen & asked a couple of questions of the main doctor as well. He has no activity restrictions except he is Not supposed to Power Lift Weights. Basically this means he is not to try to randomly pick up the highest weight he can possibly handle for just one lift. Such power lifting is apparently associated with increased dilation risk to the Aortic Root so it’s a big No No for Joe. He is allowed to do regular weight-lifting, with weight that he can do 10-15 repetitions on without an issue fortunately, since Josiah does like to do this occasionally…
We really had a great visit today & the doctor was a true joy to work with–what a blessing!
In other news, Josiah is now in Special Olympics Basketball & is to play in his first Tournament for the Season this Saturday. As Michael & Clarissa plan to be Hunting Up North this weekend it might be just J & I at his games, unless Brandon &/or other family members are also available. The Football Team he helped couch ended up winning their championship (Josiah missed that final game as he was at the Special Olympics Floor Hockey Tournament in Lansing then). He went out to eat for his birthday with a couple of friends, including the guy that got him into coaching. This guy had gotten Josiah a Championship Ring for helping coach the team so Josiah has it on a necklace now! He also had a pleasant visit with a couple of old high-school friends while they were in town for Thanksgiving & was pleased to get a birthday card from one of the girls too…
This next one is about some U of M (University of Michigan Hospital Clinic) visits, not sure how much I’ll abbreviate it…
1-16-18 U of M Visits
Journal entry by Valerie CURREN —
We had a hectic but lengthy visit at U of M today & are hurrying to get out for a late lunch before Josiah’s basketball game tonight.
As a first Josiah was willing to enter the hospital solo & sign in for his blood draw while I navigated multiple parking structures to finally find a spot on the roof top. J did great & was just finishing up with his blood draw when I finally made it inside!
At the Liver Transplant Clinic we saw the Doctor first–another first, then the Psych Team, & finally the nurse. J’s Liver numbers still look great & so they are planning on reducing his Prograf dosage from 2mg to 1.5mg twice a day, starting tonight possibly! We’ll need to get his blood drawn in a month to see how he’s doing liver-wise on this newer level of anti-rejection medicine. I completely forgot to discuss contacting the donor family, so that pends for 6 more months now…(if I’d had time with either the Psych team or the Social Worker I Might have remembered, oh well)…
Josiah basically met alone with the two people from the Psychology Team, part of the process of getting him to Transition to Adult Care. I told them about his solo drop off & successful navigation of the blood draw process before leaving them to their own devices & they were quite excited on Josiah’s behalf to see him progressing more toward a degree of independence!
We actually saw the Transplant Nurse last (usually first) & she said that she didn’t think that there was a need from the liver side to have him take “prophylactic antibiotics” before procedures. I told her that he used to need them for his heart but that years back those protocols changed & he no longer needed them. However since the Transplant he’s been back on taking antibiotics before procedures (dentist, surgery, etc–anything “invasive”)…so she is going to check to confirm whether these are needed or not. I won’t have him stop taking the antibiotics prophylactically without confirmation from several different departments (since I can’t currently find my long term notebook to “verify” the original source of that info)…
We had an extended wait for seeing the Nephrology Department because his doctor had to attend a meeting before seeing us since we weren’t done with Liver before she had that event scheduled. That meant by the time all the necessary festivities were done we’d been here nearly Five Hours–Yikes! (& not unprecedented…)
Anyway here’s the main takeaways from the Nephrology Doctor. J really needs to get back into compliance with using his CPAP as this can help with his BPs & other things. Since some of his pressures were elevated over time she wants to bump up his Lisinopril dosage from 30-40mg. This change needs to precede another blood draw by a week so we plan to start this higher dose in about 3 weeks so we can coordinate with the planned liver blood draw in a month.
They also were encouraging us to consider moving Josiah’s care into the Young Adult Nephrology Clinic. This clinic works with young people, possibly up to about 30, to assist them in taking more care of their own medical needs. This is for regular people & also (seemingly) for those with additional special needs. The Kidney Doc mentioned a particular team member of the Pediatric Liver Transplant Team who also handles transition needs. I’m not sure if she was one of the two Psych people that Josiah spoke with today or not. We need to make a more concerted effort to interface with her to try to get Josiah’s more complex issues better addressed moving forward–sigh…
We’re now going to see both Pediatric Liver Transplant & Pediatric Nephrology again in six months. At that point we’ll be trying to encourage Josiah to transfer his Kidney care to the young adult side. The Nephrology doctor calculated where he currently stands in relation to his Chronic Kidney Disease & using the pediatric protocols he’s at Stage Two. Using adult protocols he’s at Stage One…hmm. Same person, different standards. As always Josiah’s care is quite complex.
I forgot, Transplant wants him to get more immunizations so we’ll need to schedule another regular doctor’s visit. They want him to get shots for Hepatitis A & DTaP (Diphtheria, Tetanus, & Pertussis?) & also suggest getting the HPV vaccine…We’ll probably only get the first two. They said that Hep A is heavily impacting Michigan right now so we need to try to protect him sooner rather than later.
Well we’ve got to run to avoid the heavy traffic & have time to eat something so he had digestion time before his game.
Thanks for all your prayers for Josiah & our family. We’ve had a lot of illness lately so have been pretty depleted. We’ve also had some transportation issues that have resulted in Brandon needing to get hold of another vehicle. Please pray for him as this process moves forward. Also, B & C have started up classes at their respective colleges so things are getting/staying busy all around.
God Bless You Richly & A Joyful New Year to You All!
As I’m moving through the more historic Caring Bridge posts it’s obvious that it’s becoming more challenging to filter out what’s impactful to me as Mama Bear. Even just reading much of this stuff in detail is hard. I really wrestle with carrying much of this “alone”, apart from God. These are things I mostly cannot talk about with other people, if there were even people who were willing to conversationally engage in these topics. The stress of this lifestyle of complex special needs management, & my own personality & historical hurts from relationships, make my life very isolated in a number of ways…
This next entry is for a 6 month post-surgical follow-up with Pediatric Urology. Josiah was born with some birth defects in his genitalia & has had several stages of repair. Now that he was an adult the decisions to proceed further were entirely his, with input from me & the Urologist, & his dad if we were home before making a decision…
Today’s Urology Visit, etc.
Journal entry by Valerie CURREN —
Josiah & I have had a busy day at U of M thus far, and we plan to be here about another two hours working on various things.
The Lord was gracious in providing parking on the level we enter the hospital to access the usual arenas (a literal answer to prayer) even though the circling awaiting cars were backed up multiple levels within the structure. This was a blessing & made our access & timing less challenging.
Josiah’s Urology Surgeon is a strong Christian & it is always a blessing to work directly with him. Things have healed up nicely since Josiah’s surgery! The surgery wasn’t a complete success so it may be “necessary” to have another surgery some time down the road. Basically it’s completely Josiah’s decision if he wants to proceed with further birth defect repair at this point. We are to return to this clinic in about 4 months to discuss the possibilities. If he chooses further surgery it would take place at least 12-14 months since his last procedure.
Please pray for Josiah as he weighs his choices & seeks wisdom & counsel from the Lord as to whether to proceed surgically again or not. It is likely that he would require another urinary catheter post-operatively and that scenario was quite challenging for us all the last time. Although he’s having some minor issues with the surgical site they don’t rise to the level that the surgeon recommends further surgical intervention at this time. I hope Josiah will have clear insight on his (lack of?) surgical path in 4 months but there really is no timeline pressure here.
We’ve been taking care of some other tasks here today too. Josiah has been using the Family Resource Center computers to add some pictures to some of his posts at both his Freak Show & his Secret Weapon blogs. He’s also enjoying wandering some of the fertile plains of the online offerings to interface with others at a Prayer Request page at a blog we both enjoy & to watch fun things like a colorized 3 Stooges sketch.
I’ve been trying to make headway on some items to address while having ease of access to a printer here. This includes ordering up Tax Forms (ugh) for us & our kids & accessing some University of Michigan Research Studies that I may get to participate in. Please pray for the Lord’s guidance in this process as some of them provide intervention with various health challenges I face & could be of benefit to me personally as well as to the researchers…
I was able to speak with someone in the Nephrology Department and this Should result in them ordering up a small supply of 10 mg Lisinopril so that we can use up Josiah’s 30 mg supply in time to make the dosage change on that med without wasting any of the lower dosage pills.
I have been battling a lingering illness that has waxed & waned over about the last month and a half. I’m back a little more under the weather in the last few days with some fever & further congestion in both head & chest. Unfortunately this means that I’m wearing a face mask at the hospital today, which is too hot & rather annoying–C’est la vie–we can’t risk spreading things to vulnerable patients, practitioners, & the public…
In the “near” future it is my plan to begin some pursuit of part time work, possibly in the arena for which I’ve trained, Christian Counseling, or in some related field. Please pray for me as this process is fairly convoluted & I’d really like to only walk through doors of the Lord’s Leading.
Also on the job front, Josiah is making baby steps toward seeking some very limited Part Time Work. A couple of weeks back Michael & I attended a movie (Blade Runner) at the nearby Dollar Theater & I picked up an application for Josiah & spoke with the Manager for a bit about him. She actually knew who he was since he had come in a couple of times with a friend who used to work there. That friend is a reference he’s added to the application that is slowly being worked on. They already employ someone who has disabilities & may not be hiring now as business is pretty slow. Please pray for the Lord’s Leading, Guidance, Favor, & Protection for Josiah as he pursues this & perhaps other leads. He really doesn’t want to go through “the system” to get work…
Speaking of “the system”, we got a letter of notice that his Art Therapy case was going to close for a number of reasons. One of them claimed that we hadn’t provided an updated IPOS (Individual Plan of Service)…When we met with his Case Manager/Supports Coordinator from the Guidance Center last week she confirmed that she had sent his most recent PCP (Person Centered Plan) to the Art Therapy place about 6 months ago…so I’m not sure if his case is still actually closing or not. I’ve made contact with the Art Therapist via phone & plan to additionally via email. We really Do Not want to pursue an Appeal of the Case Closure because of how much heartache & hell was associated with our Due Process Special Education case & wading into the bureaucratic nightmare is totally off-putting for both of us. Please pray for favor with this therapy so that his case can remain open without jumping through red tape & that we soon can finally schedule another therapy visit now that I have some relatively reliable transportation (something that’s been an issue for more than a year). This therapist has known Josiah (& our family) since elementary school & has barely seen him since his Liver Transplant. He’s gone through so many significant changes & gains that it is vital for someone with long-term knowledge of Josiah to interface with him & document where he’s at. There are also a number of ancillary therapeutic interventions, like “Micro-Enterprise” &/or Summer Theater Camp (also at the Player’s Guild of Dearborn), that we may want to pursue through them…
Josiah is in the midst of his Special Olympics Basketball season. He rallied to the first tournament event last month even though he & I were both quite ill that day. He missed another game at a special affair where they announce the players in a voice like the Pistons announcer. He was just too sick to go then & couldn’t/wouldn’t push himself. He did get to play in Dearborn a couple weeks back & Michael & I, Brandon (for a while), & my parents all attended. He did a Great Job & was likely the High Scorer on his team!
Well I’m actually loosing a bit of steam here (relieved sighs abound!) so will sign off now. Thanks for stopping by & sharing in a bit of our Journey with the Jazzman…
God’s Blessings to You, in Christ Jesus Our Lord,
Eventually there will be less frequent Caring Bridge Journal entries to choose from so this should be winding down soon-ish 😉
Here is a taste from that post, talking about Josiah’s emotional challenges:
We are a Christian family, & this son, even more than all the rest of us “normal” family members, has an extremely vibrant relationship with the Lord. When he is facing intense emotional turmoil we encourage him to spend focused time with the Lord, reading Scripture, praying, & worshiping. This he does quite frequently. I remind him that one of the Fruits of the Spirit (according to Scripture) is Self-Control. Even though he is “wired” in his natural state to have less self-control, given the nature of most of his medical conditions, the Power of God is greater than his diagnoses & the Lord can help him come to a place of managing his emotional/behavioral challenges.
He still has his struggles & sometimes still “acts out” verbally or physically, but he de-escalates quickly & is usually truly sorry & repentant pretty quickly. I’d love to see the seas calmed before the storm hits, when the clouds are dark & heavy and the swells on the increase but apparently Jesus still sleeps in the boat well of my son’s soul until the storm has hit & his overwhelmed follower rouses Him so that even “the wind & the waves obey Him”…
There were a number of journal entries that mostly focused on Josiah’s twin brother Brandon, who’d broken his collarbone & required surgery to repair it. There were a few minor things about J but nothing really out of the ordinary. I guess given this is the Mama Bear section just the fact of surgery & hospitalization of another child, though an adult child now, provides a degree of stress & upheaval. Thankfully Brandon’s course was pretty straightforward & not really complicated by other issues like Josiah’s is…This next entry is more light-hearted, thankfully, & reflective of Some of the other things we juggle as a family & in the course of caring for Josiah’s myriad needs…
Journal entry by Valerie CURREN —
Blessings to All!
Josiah is doing pretty well currently, thank you Lord! We are overdue for some blood work & plan to get this done in a couple days. His next blood draw would be at the hospital at his next (& likely last pediatric dept) Liver Transplant Clinic visit in a couple months.
A while back Josiah submitted an application for employment at a local business. The other day he took the initiative to speak with the manager as he’d never heard back about the application. Apparently the position he is applying for hasn’t been filled yet, but until business picks up they don’t plan to have another hire. Please pray for Josiah’s employment opportunities, for God’s guidance & direction, for the timing & placement, & for Josiah’s protection throughout the process.
The other day J & I attended an appointment as part of his SSI re-determination process. This is to see whether the government still considers him disabled enough to continue the SSI payments. Please pray for God’s will in this process. Currently SSI, & its attendant Medicaid benefit, have enabled us to maintain the high quality of medical care Josiah desperately needs without excessive financial burdens in the household (many of the rest of us forgo medical care due to budget constraints). The safety net of Medicaid has been one of the peace-of-mind aspects of Josiah’s life so in the event the SSI is discontinued we’re not sure where that will leave him/us in getting very costly treatments & medications…
I “forced” Josiah to go to the library with me last week, something I offer to him weekly but strongly encourage him to participate in at least monthly. He was reluctant to go but grudgingly came along. While we were there he ran into his former High School classmate, Thomas, the young man J helped in coaching the Allen Park Bulldogs Football Team, a recreation league at the junior high level. Apparently Thomas is coaching the Bulldogs again & wants J to also help (J was a “motivational” coach last year). Additionally Thomas has been hired by their high school to coach the Freshman Football Team, many of whom could be former Bulldogs players. He has asked Josiah to help assist him in coaching the Offensive Line there too. They spent perhaps a half hour going over plays, strategies, & foundational football knowledge & J actually had some homework to study up on. Later on J went to a movie with Thomas & another friend so he got a chance to demonstrate some of his developing football knowledge. So anyway it looks like Josiah will be helping to coach two football teams in the next few months & well into fall!
I have been participating in a monthly book club at our local library for about the last half year. We have another meeting this week. So far this has gone pretty well & I am able to gently bring issues of faith & morality into discussions with several other ladies. I am also still in a strange internal place & trying to regroup after a number of personal challenges. I would appreciate your prayers for complex issues/needs that I prefer to leave unspoken/unwritten.
We core Currens, not including N & T, plan to head to Gaylord the Wednesday before Memorial Day so that B & C will get a decent stay up there as they need to be back downstate to work on the actual holiday. We are hopeful that we can get the leaf removal done before my brother Mike’s gang join us. It’s possible that some people will head to the hunting shack area over the longer weekend to do some wood detail (Michael noticed that the woodpile was significantly diminished & not at all to the older guys’ specifications during the recent Shack Attack run w/J–that went very well!) during cooler weather & less bugs than over the 4th of July. If this wood detail doesn’t happen over Memorial Day then there may end up being another Up North run to try to bring in adequate firewood (a big production!) before hunting season in the fall.
Michael & I hope to get some lilac starts to transplant from a deeply purple lilac bush we discovered last year. We have transplanted several other lilac plants over the years & the most recent transplants may get to bloom this Spring. I wrote a bit about some of those endeavors at this blog post, if any of you might be interested…
Well, May the Lord continue to shine His face upon you & give you peace, joy, hope, & love in this lovely Spring season as we watch the natural world spring to life around us, reminding us of God’s greatest gift, Jesus, & the abundant, eternal Life He has gifted to All who would receive!
I think this next post includes my discussion with the Chaplain bringing up the PTSD issues she thought I might face. Josiah’s primary care doctor later confirmed that she thought both J & I suffered from some PTSD based on certain aspects of his situation, especially from the special ed battles. I left this post “as is” because it gives just a slight flavor of some of the other things happening with the rest of the family too…
7-24-18 U of M Visit
Journal entry by Valerie CURREN —
Hi all! Josiah & I have been having a long day at U of M Hospital today, seeing both Liver Transplant & Nephrology–both for the last time in the Pediatric clinic.
In LT, things look very good with Josiah’s numbers per the available blood work! Also, for the first time we will be able to go 3 months before the next blood draw! We only saw the Nurse & Doctor today, even though they told us we would also see the Social Worker & the Psychologist. As such we didn’t get to discuss the dynamics of contacting the donor family through Gift of Life as I’d hoped…so that still pends.
Apparently it might be possible for the Anti-Rejection meds to be changed &/or reduced once we get settled in over at the Adult Transplant Clinic. However before they reduce his Tacro/Prograf further it is likely that they will perform a Liver Biopsy to ensure that there is no rejection evident in the tissues (that sometimes doesn’t show up in the blood work). I stopped by the Adult Transplant Clinic in an attempt to schedule the next Transplant visit & learned that they actually perform any needed biopsies at that clinic, with the lab just a couple of doors down. Apparently most procedures &/or staff needed to manage Josiah’s liver needs going forward might all be in that one region of the Taubman Center. This may simplify a day’s given trajectory going forward.
Josiah’s visit with the Nephrology doctor also went well. She is a very pleasant person who seems to enjoy Josiah very much. He continues to have Chronic Kidney Disease, Stage 2 & this appears to be the case whether he is analyzed by either pediatric or adult protocols. This CKD is an ongoing degenerative condition that can apparently just be managed, not resolved. His current numbers put him slightly closer to Stage 3 than to Stage 1, so he needs to watch his fluid & salt intake a bit better. According to the doctor there is currently a 50/50 chance that he might need dialysis someday. The best way to avoid that disturbing future is to maintain good health overall. Apparently the Tacro/Prograf is quite hard on his kidneys so if it’s possible to change that med, or even better eliminate it, that could improve his kidney function, or at least reduce the kidney injury that is apparently ongoing…
I was able to get him scheduled in the Young Adult Nephrology Clinic, thankfully, & they want to see him in a few weeks even though he just saw Nephrology today. This clinic is multidisciplinary, so there will be the possibility of working with Social Work & Dietary there, & perhaps other disciplines too. The Transplant appointment still pends some work by the pediatric nursing staff, so we don’t know when that will be yet.
I was able to speak with a Chaplain with whom I’ve previously spoken & our conversation & prayer time was somewhat beneficial. She has worked for years with families of complex children, including kids who are dying, & also has some familiarity with autism & Transition issues. I appreciated her insights about the “norms” for families with complex kids & the issues that swirl with various systemic battles over the years. she used the (new to me) term “trauma-informed therapy” when discussing one of the ways to manage the stress & issues associated with a complex special needs family member. I really appreciated her insight that we are each dealing with Trauma, sometimes in an ongoing manner, in relation to current & historical issues. She made several suggestions that I may look into as time, energy, & the mood permit…we’ll see…
In other news, Josiah & I ended up being able to enjoy two different extended stays at my parents’ Cottage Up North surrounding Memorial Day & the 4th of July. The second holiday saw All the Currens Up North enjoying each other, Lake Michigan, & some target practice. My parents have returned North recently for further Cottage time, though the rest of us probably won’t get back there until the Labor Day time frame.
Josiah has had a couple of Coaching sessions with his friend but football season won’t be starting in earnest until next month.
Michael is gearing up to audition for another Worship band later this week. He’s decided to step back from the Lively Pelts band at this point. I’ll be missing those gigs that were planned for later this Summer & into Fall, but c’est la vie…
Brandon recently started working at Michael’s company, so they are blessed to be able to share lunch most days. He’s being taken under the wing of an extremely skilled engineer & being taught the business from the ground floor. It’s a pretty steep learning curve as he learn how to tear don, clean, repair &/or rebuild the complex industrial equipment Michael’s company repairs. He’s still working at Bob Evans on the weekends, so is quite tired whenever he’s around…He also joined an acapella group with a friend so has very limited free time.
Clarissa has recently started playing the guitar & has already composed several songs. Her intense worship experiences in the UP with Inter Varsity have really inspired her! she is also working one day a week in a dentist’s office as a dental assistant so is getting exposed to more job possibilities. She continues to sing on our church’s worship team periodidally & sometimes gets to join Michael as a worship team member.
Well, this computer is extremely glitchy (& didn’t post my first attempt, but at least saved a partial draft) so I’m going to wrap it up here & leave the post as is…
Blessings to All! Hope you are each enjoying the warmth & beauty of God’s creation this Summer.
This one partly reflects the isolation & difficulty knowing where to turn for support, including prayer support, on the complex journey of special needs parenting, I’m going to leave it “as is” because…
Re-Post from Stella’s Prayer Request Page…
Journal entry by Valerie CURREN —
Dear Friends & Fellow Sojourners,
Here is a copy of a post I recently did at another online community that has lifted our family in prayer several times. I wanted to share this info here in case any of you might join in praying for the prayer requests I shared below.
Please feel free to visit Stella’s prayer pages yourself & become a part of this vibrant community of faith here: https://stellasplace1.com/2014/07/26/prayer-requests/comment-page-1
Thank you, Stella, for creating this prayer request thread. A couple times with (relatively) recent medical challenges (& other things) the prayerful community here & at the Treehouse have been ministering to our family & I Greatly Appreciate It!
It’s been almost a year since the online service “carepages” went offline, & it’s been a significant loss for personal & prayerful support for me & my special needs son, Josiah. I jumped into one of their recommended alternatives, “caringbridge”, but the support has not been the same & many people who shared our journey to/through Liver Transplant & beyond are no longer connected to us as tangibly. I guess in some ways I am still grieving this loss (& the loss of other supports)…
A couple of days ago Josiah & I had his last visit with the pediatric departments of Liver Transplant & Nephrology (Kidney doc dealing with his High Blood Pressure & Chronic Kidney Disease) & his care in these arenas will now be managed in adult & young adult clinics, respectively. This is a challenging change as we’d been working with most of these particular providers for about a decade & had been led to believe that they would allow more leeway for these transitions due to the developmental disability aspect to some of his challenges. I had really hoped to “work through” some of the issues (for me) connected to the process of interfacing with “Gift of Life” to express our gratitude to the Donor Family for allowing their loved one’s organs to be used for transplant. I’d wanted these conversations to occur with known team members with whom we had familiarity & (some degree of) rapport.
I ended up speaking with one of the hospital chaplains about this & other matters later that same day & got some interesting insights from her perspective. She works in palliative care with pediatric families whose loved ones are in the process of dying, sometimes even over decades. As such she has interfaced with many families dealing with complex medical needs as well as some who also deal with behavioral &/or developmental issues, like we do with Autism Spectrum.
Anyway, in addition to providing spiritual/emotional/interpersonal support she also provided a form of acceptance & affirmation of where I am being (relatively) “normal” given where we’ve been & what we still face. She brought up the concept of “trauma-informed therapy” & shared that complex situations like we face(d) inflict a form of trauma on the whole family. She basically stated that it’s important to process or manage the trauma & stress in the scenario of healthily coping with one’s existence (my version here, not how she stated things) & strongly encouraged me to seek out appropriate counseling/support.
This is very difficult for me for multiple reasons (excuses). I’ve had key people in my life either lash out or turn away & abandon me/us during significant times of need/stress & I really do have some major trust issues here. Also, I generally “feel” as if few people can really “get it” in regards to the magnitude of what I/we face(d) & it’s like I’m speaking in some type of foreign language whenever I do end up sharing some of this issues with others. I’ve been walking this path in many ways quite alone (apart from the Lord & immediate family) & managing my son’s myriad needs uses up most of my pretty limited energy reserves. The last time I worked with a counselor/psychologist I would be spent for the remainder of that day, the next day, & sometimes longer regrouping from the exhaustion. I’ve spent many years (my lifetime?) stuffing down the “negative” emotions as much as possible so that I can get on with the business of living, for tapping into my own, or others’–& I live w/ a bunch of ADHD people who generally speaking have a lesser grip on their–emotions is extremely draining to me…
Anyway I guess if this is to turn into a prayer request (& I’m sorry for going on so much here) would you please pray for me & my family as we learn, again, to walk some new paths. Please pray that the Lord would guide us in His path, that He would lead us to appropriate (& financially accessible) supports &/or counseling that would be able to meet us where we are, speak or at least “get” our language, would be gentle & Christlike, & that He would heal us of the hurts that still swirl. Please also pray that the issues related to contacting Gift of Life can be sufficiently hashed out so that I can hopefully have that contact with them before the year ends–my original goal was by the 5 year anniversary of the transplant, but that’s just days away now…
If any of you might be interested in following along with Josiah’s (& our family’s to a lesser extent) journey here is where I usually post more detailed updates:
Well, thanks for providing such a place where we can share from the heart & lift each other’s needs before that Throne of Grace. May the Lord be with Each of You & may He supply All that you need abundantly & according to His Riches in Glory! God Bless You ALL–Valerie
…hopefully you’ll see a lovely picture w/ Psalm 46:1 above…
I attempted to copy/paste the referenced photo above, so hope it works…
I didn’t italicize every part of that Journal entry above to preserve the difference between the original Journal words & the copy/paste from Stella’s Place…That post above really seems (based on just the skimming reading I can handle) to Really Capture some of the Bear Cave & Bear Trap stuff I still wrestle with…sigh…just being real here…
This next post, in its entirety, reveals some liver hiccups from 2 years ago:
Mini Addendum to our Transplant Info
Journal entry by Valerie CURREN —
The Liver Transplant nurse called with results from Josiah’s blood draw & his Tacro (anti-rejection med) is slightly high. They are not going to lower his dose at this time however as this decision would be made in the adult clinic later on, if necessary. Another reason to Not lower his anti-rejection dosage is that several of the liver function gauges were not as good as is typical. Some of this variance may be due to summertime changes in behavior.
Anyway, the bottom line is that he now needs to get his blood re-checked in One Month instead of the Three Months that we’d been told in Clinic. Hopefully this next blood draw will be more along the lines of Josiah’s usual numbers so that we won’t need further blood tests until October, when he has an appointment with the Adult Liver Transplant Clinic set up.
We discussed the process of how they choose which provider to refer the former pediatric patient to. The doctor they have recommended for Josiah is the one who gets the bulk of referrals from the peds transplant clinic. Apparently his “bedside manner” is better than some other physicians on the team. He’s also a bit more familiar with the transition process for young adults.
The nurse is also going to be sending new med sheets (one for me & one for Josiah) & a wallet size reference for his current medications. All of these are to aid in getting Josiah better educated about his medical needs so that he can begin taking increasing ownership of the management of his care (as he is able)…
So soon Josiah needs to be working on some medical “homework” in addition to the Hunter’s Safety online coursework he & Michael are plugging away at, in the hope that he might complete the training needed to obtain his own hunting license & be able to participate in a highly supervised hunt this fall (instead of his usual observer-only status). Please keep Josiah in your prayers for his medical/health improvement & his studies on both fronts.
One good thing is that the less than optimal liver numbers are not, at this time, seemingly indicative of any rejection issues. If things were of more concern they wouldn’t likely be waiting a month to re-check his blood work.
Another thing we discussed was the lack of Social Worker or Psychologist visit with us during this last clinic visit. Apparently the doctor decided (without asking) that we didn’t need to speak with either of them since the only issue he thought was of concern was contacting Gift of Life. The nurse offered to put me in touch by phone with the SW if desired, but I said I’d prefer that discussion in person. There was apparently some paperwork the SW was to have sent to us on this topic, but as we never got it (that I am aware of) hopefully it will be sent again. She also reminded me that they had made a referral to the Adult Transplant Clinic Psychologist so we could just call to set up that visit. I don’t know if they would also meet with us during a transplant clinic visit or if that is separate, as it’s unclear to me, at least, to what extent the Adult Transplant Clinic is “multidisciplinary”…I guess we’re entering a bit more of a learning curve again…
I’d actually forgotten about some of this in my shoddy brain skills now. So glad that this online journal is available to assist recollection!
This next post includes the word “transition” which is actually upping my anxiety, as it is in reference to transitioning for pediatric to adult care/services. Special Ed, who has legal mandates in this arena, among many others, really abused us in this domain & though the post should largely be medical in nature the T word is causing stress!
Josiah & I are back at U of M for his first visit in the new Transition (Young Adult) Nephrology Clinic. This is a multidisciplinary clinic so we saw the Nephrologist, the Social Worker, & the Dietician.
The doctor was surprised to see us so soon after the Pediatric Nephrology visit. Apparently the previous doctor hadn’t specified that he could be seen again in 6 months so we’d been shoehorned into their soonest available appointment. Since his nephrology needs had already been addressed just a few weeks ago this was more of a “meet & greet” time with the new doctor.
We went over his meds & basically only his Anti-Rejection meds (Prograf/Tacro) are the ones that are the hardest on his kidneys. As such she is in support with the concept of lowering his Prograf dosage & heading toward weaning off that med all together, if his condition supports it & the new Liver Transplant Clinic Doc concurs.
She showed us a graph of one of the Urinalysis markers that indicates that his kidney condition is slowly worsening, though at a very slow pace. She is hopeful that a Prograf reduction (or potential anti-rejection med change, tbd at Liver Transplant) may forestall further decline. I forgot to ask her about whether any aspect of the chronic kidney disease might be reversed.
She mentioned how sometimes Josiah has had protein in his urine historically (proteinurea?) & that it normally shouldn’t be there. She used the example of a coffee filter having a tear in it which allows some of the coffee grounds to slip through…with the grounds representing protein & the filter the kidney. Josiah seemed to grasp this concept as presented.
Apparently the Transition Clinic is to assist young adults to go from pediatric care into greater independence & self-management of their medical needs. They have some degree of emphasis of medication understanding, insurance, appointments, & compliance with directives. She seemed to think that Josiah was pretty compliant overall with his care.
We discussed the age limit of her care & learned that people don’t necessarily “age out” of the transition clinic. Rather, whether their care is transferred to adult care entirely or coordinated between transition & adult depends on the needs of the patient (& presumably their developmental challenges). She also provided the helpful insight that someone’s developmental challenges can be better served by providers that have been dually trained in both pediatric & adult care. This is important info going forward & may help us get better care for Josiah as we move more fully into adult care…
Josiah became very animated during the Social Worker visit & shared several stories & seemed pretty comfortable with her. She shared a small amount of written material to encourage him to learn a bit more about his kidneys & also gave him a couple of websites to check out with video info. I had to answer a number of the questions because Josiah didn’t know the answers, so there is still a learning curve in his self-care ownership…
The nutritionist mostly focused on his dietary needs, as one would expect. He had a hard time attending to her questions & providing direct answers. He tends to get lost in the weeds of association She provided him with a handout of salt heavy foods he should avoid as much as possible & put forth the goal that he wouldn’t eat more than one such item each day. It will be a bit of a challenge to gain some degree of compliance with this goal…
He needed to leave a urine specimen & I also needed to visit the nearby lab to comply with a specimen request of the lead doctor of a research study I am likely to be able to participate in…
Josiah recently started his coaching football duties in more earnestness. There have been some very long days & a game coming up later this week. Also, even though he is just technically helping to coach the freshman team he has been involved a bit with both varsity & junior varsity. They got to eat some pizza in the HS cafeteria & he told the SW today that he actually had a tear roll down his cheek. He really misses school, his “home away from home” & his “second family”–how he described it to the SW…
In other news:
Michael is now on deck to play his bass in worship in 3 different churches!
Brandon is settling into his new job & not as stressed as the first few weeks!
Josiah still needs to focus on his Hunter’s Safety Training so he can hopefully take his field test day along with Tara before hunting season begins…
Clarissa has been on a roll playing her guitar & writing songs, mostly of a worship nature!
I have recently started more direct diabetes intervention & hope to be in the research study soon…
Well, the Family Resource Center is about to close, so I’ll close here…
God Bless You All!!!
I’m going to leave this one its entirety for it largely addresses the stresses & memories &/or lack thereof of many things we have faced. I’ll include the comments too:
Journal entry by Valerie CURREN —
We attended my niece Veronica’s wedding yesterday & I had a number of conversations with people who have prayed with/for us over the years. One woman, who is now in declining health, was a very diligent prayer warrior when I was pregnant with the twins fervently beseeching heaven for “Two Babies!” It was special to see her & thank her again for her prayerful care & support of my family over the years.
We ended up seeing an old neighbor from my childhood, who was my youngest brother’s (Veronica’s dad, Mike) age & his wife. She recalled me being a big support to her during the years of early childhood parenting. She recalled events that I have no recollection of, perhaps I’ve been a bit “memory wiped” over the years due to stress, hormones, aging, or potential health issues. I was glad that she seemed to feel I’d been a crucial assist during a time of overwhelming isolation for her.
In the course of our conversation I shared some of the details of the Brain Tumor & Liver Transplant journey…Watching some of the looks on their faces it seemed that some of the info I shared was rather overwhelming (not my intention)…I really don’t have a “normal” frame of reference as to how deep to go in sharing some of the realities of where we’ve been (or even are). We also were able to converse on some Autistic Spectrum issues we were both aware of…
I guess some of what was discussed was on my mind later that night as Clarissa & I were talking about wide-ranging things. For some reason I traversed a bit of “memory lane” in relation to Brandon’s idea of our “best Christmas ever”–the one where Josiah & I came home on Christmas Eve after having spent the night in the hospital following his Liver Biopsy & Collapsed Lung (complication of the procedure)…For some reason that segued into talking about the initial brain & liver phone calls that happened a couple days apart (but in my faulty memory “feel” like they were one call as the first one–liver–hadn’t fully been assimilated before the brain tumor call came) & how I was “messed up” that Thanksgiving & Christmas (& beyond) because of the intensity of those major medical bombs going off…
Anyway that lead to me “reminiscing” about the very fact of the existence of tumors in two separate locations of Josiah’s body neither of which revealed their presence in blood markers & both of which were “incidental” findings when other aspects of Josiah’s medical needs were under closer examination. So I also expounded on my attempt to see if we could get some type of “full body scan” to rule out any other tumors that Josiah might still have (remember that the liver “masses” were classed as “pre-cancerous” & their were even then no tumor/cancer markers in Josiah’s blood).
I harped on the topic enough about the concern of other possible tumors that the Liver Transplant team reluctantly referred us to a Pediatric Hematologist Oncologist (a blood cancer doctor) to get a work up. The result of that appointment was that the doc wanted us to return if/when ever Indicators of possible tumors became evident (like clinically or in blood work)…So since all the Dozens of Tumors in Josiah’s Liver & the one in his brain (an Adenoma, that shouldn’t have been there based on both his age & his sex) neither became evident clinically nor in blood work this “wait & see” approach was & is highly unsatisfactory to me!
Well, I wore Clarissa out just re-hashing some of those things & fired myself up a bit in the recall that the very real possibility of other tumors in Josiah’s body exists without any (seeming) meaningful way to discover them apart from incidental findings.
I guess all that is to say would you please pray that If there are other medical needs that Josiah has, including Tumors, that they would be brought to light sooner rather than later so that they can be addressed. Since we have yet to see the new Transplant Team on the adult side hopefully I’ll remember to run this by them & see if they might be willing to look into a “full body scan” or at least something a little more comprehensive…
Anyway I just wanted to get some of that down here while it was relatively fresh in my mind.
Thanks again for your prayerful support of Josiah & our family. We really appreciate being lifted to the Throne of Grace & buoyed on the prayers of the saints!
God Bless You All…
PS As I re-read this before posting it seems that I’m sharing historical aspects of various battlegrounds that still have an ongoing impact. That brought to mind a recent post I did on one of my other blogs that reflects primarily challenges faced in caring for Josiah’s needs over the years. There are many scriptures interspersed within that post & you might find them edifying here:
I’m going to abbreviate the next Journal entry…go to Caring Bridge if you want to read about our dog’s healing…
Prayer Works…Even For Dogs!
Journal entry by Valerie CURREN —
Dear Prayer Warriors!
I just want to say that prayer really works…
Because of my niece’s wedding on Saturday & Brandon’s crazy work schedule he decided that he’d take Shadow to the vet on Monday after work (if he was still alive)…At some point over the weekend my husband & Josiah prayed for the dog…(Josiah prayed for me years ago when we were hiking in Colorado & I had very labored breathing & immediately my breathing issues evaporated!).
Here are a couple of recent posts to one of my other blogs that both have a lot of scripture throughout…Blessings!
If you go to any of my or Josiah’s wordpress blogs & comment then we get notifications (which unfortunately doesn’t happen here at CaringBridge) so it’s a bit easier to communicate back & forth.
As a reminder here’s where you can find Josiah, in addition to on Facebook: JosiahsFreakShow.wordpress.com JosiahTheSecretWeapon.wordpress.com
I can be found at: SpecialConnections.wordpress.com PioneerPerspectives.wordpress.com JazzmanJournal.wordpress.com ChristLikeKara.wordpress.com
Please check us out at any of these places & let us hear back from you.
God Bless You All & Have a Joyous & Relaxing Labor Day!
Josiah’s football teams have begun their (pre?) seasons recently so he is pretty busy with practices & games. Please pray for his witness to glorify the Lord as he really got discouraged & ended up berating some of the team surrounding a bitter defeat yesterday. I’ve encouraged him to get his spiritual armor on before games (& practices) so he more readily reflects the Fruit of the Spirit!
I’ve been finding a bit of an outlet in some of the spontaneous “spiritual” writing I’ve done recently on one of my blogs. There was some feedback by a couple of people that they were very blessed by this “ministry”. Please pray along with me that the Lord would guide others to these (or other) writings so that they may be drawn closer to Him & that He would be glorified. It’s my hope, prayer, & desire that our experiences & perspective of sharing them can be a blessing to others who may also face “similar” challenging situations & I trust that the Lord will open doors for these writings of Josiah, (about) Kara (as preserved in ChristLikeKara), & myself will be used for God’s Kingdom work. Josiah is regularly enthused about how many different countries around the world have been represented in visitation to his blogs…God is being glorified in large & small ways & the Internet is allowing our voices to have a (potential) wider hearing…
Oh, finally, Josiah needs another blood draw to check his liver status as his numbers were just a tad bit off when we last saw the Transplant Team last month. We plan to get it tomorrow (if Clarissa & I don’t go Up North–our decision is still pending) or likely Tuesday if we travel. Please pray that if there is any issue that it would clearly show up & that the Lord would continue to restore Josiah’s health & keep his new liver in excellent condition.
Thanks for praying & encouraging us. God Bless YOU!
Here’s another Liver Transplant clinic visit, not sure if I’ll abbreviate it or not. My opening line is reflective of the perspective that very few people, even those who follow Caring Bridge, check in on updates for Josiah. Sometimes I feel like I am speaking/writing to the wind…There was A Lot of tough stuff in this visit so I’ll leave the post in its entirety. The paragraph beginning “They are not, unfortunately…” is pretty relevant given recent developments…at least on the medication front…
Adult Liver Transplant Clinic Visit
Journal entry by Valerie CURREN —
Hi Everyone (is Anyone out there???),
Josiah & I are back in Ann Arbor for another appointment, this time for his first visit to the Adult Liver Transplant Clinic. We had a rough start in transit due to huge traffic backups with an accident near the I-94/US 23 interchange that made us be a half hour late (we actually Might have been on time otherwise–wow). Josiah filled out a last 2 weeks review of systems form independently while I took care of the medication sheet & he didn’t fight me on doing that task.
We had an enjoyable interchange with the Medical Assistant who is studying to become an RN & has recently come to the Liver & Kidney side from Heart Transplant. She is a gifted singer/songwriter who has done some work for a short time with Mo-Town. We were able to share with her about another musical artist Michael knows, Rufus Harris, & she looked him up as we spoke & told us she was “all about networking”.
We weren’t sure what the protocols were for blood draws on the Adult side & so we’d timed Josiah’s evening med dose to coincide with our scheduled arrival time in case they wanted a blood draw. I asked the person who signed us in to check on whether they wanted his blood drawn today or not because if not I’d have him take his meds, (he tends to not feel right & get sleepy if his morning meds are much delayed). We were told that he’d get a blood draw After the appointment so he could take everything but his Prograf immediately & then the anti-rejection med after the blood draw. This meant that he didn’t seem to get too off kilter, thankfully.
We had a decent conversation with the Physician’s Assistant who apparently is also empowered to make medication decisions. She seemed to function similarly to the Residents on the Peds side, in that she came in first & discussed most things with us & then went to share with the main doctor who came in later with the nurse. The Transplant Doctor was very warm & engaging, more like a “typical” pediatric doctor in demeanor than what might have been encountered under adult care. Apparently, per the Nurse‘s later discussion, he has a very involved practice between clinic, teaching in the medical school, & work in India (he appeared to be of an Indian background). As such it is very difficult to get an appointment with him. This was born out on check out in that there was only One appointment available with him in April & the next available was in July. This means that if we ever need to reschedule it is better to attempt it sooner rather than later.
Both the Nurse & the Check-In/Check-Out person encouraged us to get on the Portal, a way to electronically interface with his records & providers at U of M. Apparently this way we can also look at lab results, instead of just get printouts, like in peds. We can also request appointment changes in the Portal & possibly get bumped into an “overbook” slot so potentially have more wiggle room appointment wise. Our April visit is currently for an 8:30am slot that will be a pretty big challenge for us to make on time, especially battling rush hour traffic…
They reviewed Josiah’s historical labs & were pleased enough with his overall lab trends to order a slight reduction in the anti-rejection meds!!! This means that as of today he is now to take 1.5mg of Prograf in the morning & 1mg in the evening dose. He’ll get blood drawn in a month to see how he’s doing. Apparently they are more concerned with where the actual lab numbers are than the “Tacro level” so if he continues to show appropriate liver functioning it is conceivable that they might lower his dosages again over time.
They are not, unfortunately, on board with the concept of completely eliminating anti-rejection meds all together. They do, however, have some patients who have chosen to discontinue all anti-rejection meds on their own & they realize that they cannot Control what patients do with the advice that is given. Apparently the research study that tracked such patients was shut down because some of them got into rejection issues that were difficult to manage & required bumping med doses up pretty high. It seems that they might practice more of a slow & steady approach to changes…
Our responsibility is to keep appointments, take meds as directed, & get labs done on the recommended schedule (which we are almost always very good about), Josiah had to sign a document to that effect. They will do much less (even no) handholding compared to pediatrics. Since we almost never needed such handholding (reminder calls for labs etc) this may not really be that big of an adjustment. They will call us if something is concerning in lab numbers & we need to get labs re-drawn more frequently than planned.
We ultimately didn’t have to get any blood draws today since they made the med change & want lab work in about a month to see how he’s doing. We’ll get that next month draw in the lab close to home (assuming we get the orders in the mail, as promised, since the printer was down) & then if numbers look good it might be lab draws every 3 months!
Return Visits: Apparently they can be comfortable with Yearly Transplant Clinic visits, rather than no less frequently than every 6 months, like in Peds. I don’t know when Josiah might be slated for annual rather than semi-annual visits but they do want to see him again in Six Months.
Although some staff we spoke to implied that this was a multidisciplinary clinic it isn’t really one in the sense that we’ve previously experienced. There is a dietician available as well as Social Work, Psychology, & even Psychiatry, but they seem to be more on an “as needed” basis & may not be able to be seen on the regular Transplant clinic day, depending on some factors. I believe we had a referral to Psychology from Peds & they said they’d look into it but that apparently didn’t happen. I think we might have to be even more proactive in managing other aspects of Josiah’s care than before. Since we needed to speak with social work &/or psychology several times on the peds side but it didn’t happen due to team meeting times it’s likely that that domain might get even less care from adults than peds–c’est la vie…
Regarding blood work it is possible & perhaps even preferable to get Josiah’s labs done about a week before any future Transplant Clinic visits. This means that all of his liver numbers should be available to review at the time of the clinic visit, so med changes or other issues can be based on actual data rather than historical trends. This means that unless he has other appointments around a week before the Transplant Clinic it is unlikely that he will get many of the routine labs done at U of M anymore. I guess if I have an appointment at Dominoes Farms (like with the Research Study I’m currently in) in the right timeframe I could bring him along to avail ourselves of that U of M lab if need be.
We had a pretty exhausting conversation about driving & math related challenges Josiah faces/faced on our way in. He got pretty upset with me & was practically at the place of blaming Michael & I for why he doesn’t drive now. He seems to think that because we didn’t get him into a Driver’s Ed Class we chose to prevent him from becoming a driver. I tried to explain to him that the nature of numerous disabilities he has means that it is Extremely Unlikely that he will ever be able to drive meaningfully (aside from in a parking lot or in the woods with a family member alongside) in an independent manner. He was pretty mad at me for spelling out many of the reasons why.
I tried to get into his headspace about how he might feel powerless in many ways in his life, like how since I was behind the driver’s wheel he really couldn’t Make me go somewhere & he was coming along for the ride. Later when he seemed to near the place of asking why did God make me this way (at least I thought he was headed there) I talked with him about the “unfairness” of how his life has turned out. On the one hand, if he compares himself to Brandon, his (possibly identical) twin he could imagine how his life Might have turned out had he never had any medical conditions or disabilities.
On the other hand, if he compared his life to how some of his early therapists had viewed him (& his potential) some thought that he would “never walk or talk, never read nor write”. I tried to get him to envision such a life where we had to help him use the bathroom &/or feed him & where he might only get around in a wheelchair. And if he watched TV or listened to music he might only partially understand what he was seeing or hearing.
I also reminded him of the last school-based PT (Physical Therapy) evaluation he’d had, before he’d had his transplant. The guy that evalled him had actually been his PT in elementary school. That PT was Raving about Josiah’s capabilities. He had never evaluated a former student/client/patient who was able to do the things that Josiah could do. Yes J was still awkward & uncoordinated & had various struggles but he could do hand-over-hand on the overhead bars & do various balancing & coordination activities that other kids just couldn’t do. He was almost crying when he gave that report & I almost was trying to convey to Josiah how far he’d come.
The “end” of that discussion was that we really shouldn’t be comparing ourselves to others & the standard we were to compare ourselves to is Christ Jesus, one we can never attain, but can always strive for…
Before we got to the family resource center where we are currently both using the computers we encountered an extremely pleasant security guard at the Mott Information Desk. We were able to encourage each other in the Lord & had a very uplifting encounter that was a seeming highlight of all our days. That guard, like Josiah, is shining the light of the Love of Jesus wherever he goes!
Well, that has all worn me out & I have a splitting headache so that’s all for now. God Bless You All!! –in Christ, Valerie
Update around 6pm–I convinced Josiah to go ahead & sign up for The Portal to access his health info & get email alerts about it–so this represents him slowly (& reluctantly) beginning to take a little more ownership of his own life!!!
Here’s a small snippet of a much larger post:
10-9-18 Other News
Journal entry by Valerie CURREN —
One of the things that is a current stressor on the Josiah front is further upheaval in the support systems arena. Last month when we had the monthly meeting with the Supports Coordinator I got into a pretty angry place & was pretty verbally aggressive in her vicinity (not At her but expressing extreme frustration To her) because she finally clarified that one of the main reasons that we haven’t been able to get the in-home therapies re-started for Josiah is that that CMH (Community Mental Health) facility no longer coordinates such care for people who have insurance other than or in addition to Medicaid (at least that’s what I understood her to mean)–it would have been helpful to have this spelled out Years Ago. So basically because we continue to keep Josiah on Michael’s Blue Cross policy, in addition to the Medicaid he’s also on, we are being Denied basic Supports Coordination/Case Management & Needed Therapies & Services.
These things used to be managed through the Guidance Center for many years, since he was in grade school, & we used to have access to either center-based therapies or in-home therapies or sometimes both. As someone on the Autism Spectrum he continues to need Occupational & Speech Therapy & possibly Physical Therapy (we’ve been trying for Years to re-access the PT Steve who was Amazing with J & came to our home to work with him) & to continue to get certain care & various kinds of skills training. A few months back this same SC had expressed shock that J had never received needed ABA Therapy (Applied Behavioral Analysis) through neither the Guidance Center nor the Public Schools, both of which apparently had an obligation to do provide it….Anyway I got pretty upset when I understood that his basic needs are being unmet because of having insurance beyond Medicaid. And given the magnitude & complexity of his health issues I’ll likely never be comfortable dropping him from “regular” insurance coverage to make access to programs easier–yikes!
Well, about a week after that anger-filled encounter we got a letter that that Supports Coordinator was changing jobs within the company so J was to get yet another new SC (sometimes they only last a month)–hopefully that more angry encounter wasn’t a factor in that change, but who knows…sometimes we are given the courtesy of such a heads up personally & sometimes someone disappears & someone else appears with no warning & this can be distressing. This upheaval can be quite frustrating & the skill level of an SC can be highly variable. At least he’s still within the purview of the same SC Supervisor (one of J’s former SC’s) so there is some continuity of care though primarily indirectly.
Well last week we got an urgent letter from the company that manages his direct care worker urging us to take specific action within two days to avoid the possibility of losing that Respite Care worker (whose been working w/ J & our family for more than 5 years) as of next week. I followed the letter’s instructions to the letter (!) & within minutes of thinking that this “crisis” had been averted received a call back from the latest government agency we needed to coordinate with to have the letter’s “solution” be explained to be impossible…A half hour of wasted time, frustration, & hopelessness (this digs back into my Special Ed Case issues obliquely)…
Josiah’s direct care staffing remains up in the air. I was planning to make a phone call today, from the hospital, to the letter’s originating agency to see if things have been resolved yet. However as I’ve been writing here J got an email from the agency contact to say that various agencies are in contract negotiations to see if issues at the company level can be resolved. Needless to say this uncertainty is stressful & represents the potential of one of the few remaining “supports” falling away, at least for a season. He already only gets less than a dozen hours a week of the nearly 40 hours he’s supposed to receive of “support”…Massive Sigh!!!
A new governmental player in the mix (not our choice but “mandated” in Wayne County?) wants me to do some online infestigation [sic–it’s too priceless to “correct”] to see if I can figure out what new “middleman” organization we might “want” to work with since the letter’s pathway is unavailable. Well between multiple phone calls, conversations, unleashed anger (something I rarely let get that loose), & the historical & seemingly pointless/fruitless battles of the past I am experiencing some significant stress & “triggers” from numerous previous traumatizations from engagements with people & systems that purport to exist to help special needs people & their families but seem to do more harm to me/Josiah than they do legally/morally mandated “good”. I’m sure there is a prayer request in there but I’ll leave it to The Spirit to guide anyone so inclined to pray for us!
It’s strange, but it seems that I’ve updated Caring Bridge more than I thought, because I rarely do posts unless we’re at the hospital using the Family Resource Center. Now it seems that the bulk of these posts are more of a memory prompt for me than a communication to interested parties, as CarePages had been. I guess we are documenting our journey with “the word of our testimony” even if most people have little if any interest in knowing what is going on. I’m thankful for Whatever Prayers or communications arise from these journal entries!
The below Cardiology Visit Journal post fills me with guilt because Josiah was supposed to be seen roughly April 2020 for his next visit, but with all the “pandemic” (you probably don’t even want to get me started on that topic!!!) stuff we haven’t scheduled it yet. It was supposed to be roughly a year and a half from that last visit…”as is” below…
12-11-18 Cardiology Visit
Journal entry by Valerie CURREN —
Hello (anyone out there???)…Josiah & I just finished his Pediatric Cardiology visit. Things surrounding his heart remain quite stable with little (if any) change from last year. At this point there are no med changes nor any anticipated surgeries or procedures. When we come back “next year” (we may aim for April to be outside of the cold season, J is fighting a cold today) he’ll get an echocardiogram in addition to the doctor’s visit.
Here are some of the key take-aways from today’s appointment:
They want to hear from us if Josiah’s excessive heart beat incidents increase in intensity & duration. Currently they are happening less than once a month & last less than a minute.
His EKG “looks exactly the same from last year”.
There is a murmur that registers 2/6 (the same as last time) that if it gets to 3/6 they will want to look further into it.
His “dilated aortic root” is based on pediatric protocols. When the size of this aortic arch is measured against adult protocols it is on the large side of “normal”. They will continue to keep a close watch on it as its increasing dilation is associated both with his bi-cuspid aortic valve & with higher blood pressure.
Maintaining a decent activity level, keeping his BP’s down, & not using tobacco are keys to Josiah’s heart health.
The aspirin regimen he’s on–one baby aspirin a day–is because of the “heavy trabeculations” (tightly interwoven muscles) in his left ventricle particularly. There are not sufficient long-term studies to know what the overall benefits or risks of this minor aspirin usage might portend. He can stop aspirin in lead ups to surgery or if its causing him bleeding problems. He can take acetaminophen (or even headache meds with aspirin) for pain. Some liver docs might recommend not exceeding 1/2 the daily maximum dosage of these over the counter meds to avoid stress on the liver. If he uses caffeine (in migraine meds or food/drink) he should be aware if it is causing him heart palpitations.
Prognosticating on his potential cardiac surgical course it could be as soon as 5-10 years from now & as long as Never. It totally depends on how his heart & valves are doing. All we can do is keep tabs on his heart & address issues as they arise.
I asked them about the possible lingering blood vessel to his heart that had been the “Portal Vein” & what its status was since his Liver Transplant. They looked up the Transplant surgical notes & discovered that the “PV” did Not dump directly into the heart (as we’d been told previously) but joined with the IVC (Inferior Vena Cava) just before it entered the heart. Somehow during the transplant surgery they were able to cut off the “PV” just below the IVC & use it for the Transplant, all while within the abdominal cavity apparently. The part of the “PV” that was left near the IVC was sutured closed & then the IVC was divided so that the nub of the “PV” was removed & the IVC opening was closed. This meant that there was no pocket/pouch of the original blood vessel left to potentially leak nor to become problematic with clots.
Any future med changes from other departments do Not have to be run by Cardiology except if there is an attempt to remove the aspirin regimen. The aspirin & BP meds are the only ones that really directly impact the heart & the BP meds can be well managed by Nephrology in conjunction with Liver Transplant as either the Liver or the Kidneys are where they would be metabolized.
Josiah had a nice chat with the doctor about his football coaching season & last season’s football game where he got to coach at “The Big House”–U of M’s storied football stadium!
Josiah’s football coaching season that recently ended was a bit unusual. He was invited by his friend, Thomas, to coach the Allen Park Bulldogs (middle school age community team) & the Freshman Allen Park High School Football Team. The Bulldogs really struggled during the season & partway through his friend got “fired” from that team. That left J in a strange limbo place because he wasn’t “fired” but didn’t feel comfortable without his friend there. Later on Thomas was “re-hired” by the Bulldogs so he & J finished out the season. After the Freshman team’s season ended J was able to continue with assisting with the APHS Varsity Football team, which went well into the post-season. He attended many games & helped out with tasks as asked/needed.
Josiah obtained some tickets to the Red Wings Hockey Game from the Social Work staff here at U of M. He invited Thomas & Dylan to join him but they didn’t find someone for the 4th ticket (J didn’t start the scheduling early enough & I didn’t probably remind him enough). They had a really fun time at that event. The Twins (J & B) were invited to another Red Wings game recently in honor of their birthday. They were joined by a number of friends & had a really good time then too. Most of that group also attended Michael’s inaugural concert, which was a big blessing to all of us…
In Special Olympics J did not show much interest in any other sports but Basketball. Fortunately the Bball season has just gotten underway & he’s excited again to be playing that team sport. This season he has returned to “The Hammerheads”, which is a higher skill level team than the one he had to play on last year, The Piranhas, (to accommodate the coaching needs of the Downriver ARC, not his personal skill set). He & his Respite Worker, Hamzah, will be going to all practices together & the rest of the family will attend as many games as possible which will go from January to March. There are several players at J’s level on this team, per H, so he won’t be the “superstar” like he was on last year’s less skilled team. This should be a challenge for him & hopefully serve to encourage him to improve his skills individually & his teamwork overall. There is a possibility that this team might make it to Lansing at the end of the season, but that remains to be seen.
J expresses Much interest in looking for a job, but he does Not want Any help from “the system”–which appears to be a lingering fallout from the brutality & heartache of our last special ed battle. He doesn’t seem to grasp that he probably will need help with every step of the job search, acquisition, & retention process. Hamzah’s hours are able to move more into daytime so it’s possible that they will together (perhaps on foot) canvas available positions within walking/biking distance of our home. H is willing to be some type of “job coach” to J in the event he does get hired…
Please pray for the Lord’s guidance, provision, favor, & will in J’s job search process.
In the employment domain we need to ensure that he won’t lose his SSI in the event he ends up being hired some where. We’re also aware that maintaining a consistent schedule & fulfilling the demands of a boss will be more challenging than J can even imagine. Hamzah has gotten J to do some minor jobs around his apartment or had him assist on his paper route job. We’re hoping that some of these skills, in addition to the household chores he undertakes at home, may help prepare him for some type of outside work.
We’ve been without a “supports coordinator” for more than a month now. Well technically a new one has been assigned but we haven’t met with her yet. It’s challenging for both J & I to try to “break in” a new case manager & the hiccuppy way these “helpers” keep changing can make accessing services pretty challenging. I hope to initiate some contact soon so that we can see where we can go in better getting J’s needs met.
We still need to get back to Art Therapy & get some input from his longtime Art Therapist. I really can’t wait to see what she might say about how J is doing! Per Hamzah, J is in that strange place of being so high functioning that sometimes people forget the level of needs he actually has & being too “low functioning”/atypical to really be considered a regular person. This may be a partial factor why we had such a difficult time accessing needed services through the school system. H, who performs ABA Therapy (Applied Behavioral Analysis–an intensive autism spectrum intervention) elsewhere says he can see how that therapy would have really benefited Josiah (it should have happened through the schools &/or Community Mental Health & was one of the many “mandated” supports he was denied by various systems)…At Art Therapy I hope to have discussions about their “Micro-Enterprise” program (if it’s still available) to see if that might be an avenue J (possibly along with H) might want to explore…
Hunting season was pretty exciting around our home. J got to head up during Bow Season & he was integral to managing our new dog up there. Nathaniel & Tara got up during rifle & so have kicked off that new aspect to Northwoods Hobnobery, having one’s wife with him during hunting camp. Tara’s first ever hunt was blessed with the inclusion of a deer in the camp, obtained & retrieved solo by my dad’s longtime hunting buddy, Clyde. Michael, Brandon, & Clarissa made several trips North for bow & rifle but other than Clyde’s kill no one else (thusfar) has brought home the bacon. Bow &/or muzzleloader continue through December but perhaps no one will get back out this season in pursuit of Michigan’s wily whitetail. There may be a trip to hunting camp to retrieve tree-stands, scout terrain, &/or bring in some more wood for the fire, but that remains to be seen. This was a relatively illness-free hunting season (for a change) but now a lot of upper respiratory illness is travelling through the family. Please pray for restored health for the whole family…
Michael‘s work has been very busy lately. It’s also been quite stressful with one of the big bosses camping out at his location & stirring the pot & stressing people out. Please pray for the Lord to be with M in protection, peace, & provision there. He’s also been very busy with music, playing worship at 3 different churches & now in a different Christian Rock Band, Interstate Revival. They already had their first concert after less than 2 months of playing together. It was fun to see M rocking again & his new Schechter Bass has just the right amount of punch to enhance this new band’s sound!
Brandon has been working very long hours at his main job. He’s planning to be done at Bob Evans just before Christmas, so he can finally have his weekends relatively free. He’s started doing Lights at his church on the campus of Wayne State University. He’s also brought a number of family & friends to this church & there has been a lot of enthusiasm about what’s happening at this mostly college-aged congregation. He often makes it to a Wednesday evening Bible study & many times brings friends along! He continues to play soccer with Nathaniel & Tara & he recently acquired a snowboard so is apparently undaunted by last winter’s broken collarbone in his pursuit of this sport.
Clarissa is having Finals this week at Henry Ford College. She’s also planning to leave Bob Evans soon, likely before the end of the year when their hours change. She’s looking for another job that can work around next semester’s school hours. She continues to be very involved in Intervarsity Christian Fellowship, primarily on her old campus of U of M Dearborn. She is planning to attend a weeklong retreat with them over the Christmas break. She still sings on the worship team at our church & participates in a young adult bible study when she can. She has been enjoying playing her guitar & writes a lot of music. When she got back from her most recent hunting trip playing music was practically the first thing she wanted to do…after a shower!
I’ve been participating in a medical research study & recently passed the halfway point. This means that I’m taking a new medicine that might have some personal infection side effects. Please pray that I don’t contract any of these possible infections. I’m bringing a small amount of money into the household though this endeavor, which is a blessing. Perhaps after the new year I’ll begin looking for some part time work. I have a number of personal challenges to overcome, avoid, or address in this scenario–God knows what’s needed here more than I can articulate. Please pray for God’s guidance for this process.
Thanksgiving was pretty strange for our family this year. Usually we’ve gathered together at my brother Mike’s house. This year, with their oldest daughter having gotten married, their family has had even more to juggle than usual. We were going to have just a small Curren Thanksgiving at our home & invite my parents & N & T. However Tara’s parents were hosting a gang & really wanted to include us. Ultimately Michael skipped Thanksgiving all together to head North to the Shack to get both cabins ready for the incoming rifle hunters. Since it was less than 20 degrees out this preparation was key to people being able to sleep relatively comfortably later that night. The roads in were so treacherous that he ended up having to get towed at one point–wow! So we didn’t see any of my family of origin kin on the actual holiday. I did, however, get to take home enough turkey carcass & leftovers to make about 2 gallons of turkey soup. Since I stored this soup in a couple of different batches we’ve been able to “enjoy” various renditions of this post-holiday staple.
Well, I’m actually running out of gas (finally) so will wrap this up…We did get Josiah’s blood drawn before his appointment this morning. Hopefully when the results are available we’ll find out that his liver is still doing fine on the lower anti-rejections meds dosage.
God Bless & Keep Each of You. May you be bathed in the Light & Life of the Christ-Child, whose incarnation & miraculous birth we celebrate again during this Season of Love.
OK this next journal entry is Medication Madness, which I believe I quote far above, so now I’ll try to limit stuff to just the Mama Bear aspect, assuming I can tease it out…
Jan 11, 2019 I wrote up about our visit with the Primary Care doctor where she indicated she would continue to carry Josiah as a patient, so imagine our stress & surprise when a video appointment during the “pandemic” resulted in her asking us to find new PP for Josiah. This was a blow akin to “now he needs to be listed for a liver transplant” after being told “he’s not a candidate for liver transplant” which I thought meant Ever not just At Least Not Yet…This is a painful & confusing loss of a support system & my note reveals that my recollection of the declaration of continued care was not me “mis-remembering”…though it could be me “mis-understanding” I suppose…
I’m not going to post those details here, they are at Caring Bridge if you’re interested. I guess that loss is still too raw & painful for me to be dispassionate about it yet!
This next post has lots of info & I don’t know how well I can pare it down because I’m still in a weird state on the primary care front (just being honest here)…
Here’s the Latest…February 25, 2019
Journal entry by Valerie CURREN —
Hi everyone. Thanks for reading & coming alongside our journey with Josiah with prayer & encouragement…
Things have been a bit hopping around here since I last wrote. Thankfully some of the prayer requests shared previously have been answered with desired outcomes. My dad has been out of the hospital for a while & the septicemia is mostly gone via prayer & antibiotics. My brother Curtis underwent surgery on a tumor in his neck & it went very well! God was very gracious in that the procedure went better than the surgeon could have anticipated. In fact, my parents are currently in Dallas visiting Curtis & his wife Dawn while C is recuperating.
Josiah had an appointment scheduled earlier this month with the Adult Nephrology Clinic but the roads were pretty treacherous that day so I was able to reschedule it to mid March. I’d been planning on getting his next needed blood draw on the same date so will now get that lab testing done at U of M before the rescheduled visit.
Josiah’s Special Olympics Basketball season is winding down with the District Games happening this coming weekend. If J’s team wins the 4 team tournament that day they will be invited to the State Games later in March. If they come away with less than the Gold then his season will be done. This team, The Hammerheads, went to States last year but J wasn’t on the team for that season. They played against the team that had beaten them at States last year & beat them fairly handily in an exciting game a few weeks ago that our whole family attended. However, when they were playing in Area Games a while back they did poorly & ended up losing both games. J really wants to experience States in Basketball so I guess that could be a prayer request, that God would make a way, in his will & timing here.
J & I met with his new Supports Coordinator a few weeks back & she shared an opportunity with us that Josiah is now considering pursuing. It would mean he would be willing to be a “Peer Advocate”, someone who receives services at The Guidance Center who would also be available to sit in on certain meetings to support another recipient going through Guardianship proceedings. He would be called in advance, sometimes even a few weeks in advance, & they would agree upon the date & time of the planned meeting. On the date of the meeting he would attend the event, sign in, & speak up for the peer (if he wants) or just be there as a support person. They would pay him $25 for each session which should take 1-1 1/2 hours & there is a possibility for having transportation provided (which would help me so I can be free for theoretical work hours, whenever I land another job). J wants to look like a professional when acting as an advocate so is already working on his suit wardrobe in anticipation of this opportunity…
In the online arena Josiah has recently signed up for Twitter & is already boldly proclaiming his faith from this platform. He is also on Facebook, Instagram (I think), & of course his blogs. He continues to worship the Lord regularly & is consistently moved to tears during various family prayer times. His heart for the Lord remains very tender. He’s attending church periodically with Brandon at the Wayne State campus church, New Life, & has attended a guys Bible Study from New Life a few times. Check out Josiah’s Twitter feed here:
I encourage him to visit the library with me periodically (I go weekly & get him there roughly monthly) so he can choose items of interest. He’s been on a kick reading about various countries, in particular countries that are represented in his blog readers. He’s also been boning up on various superheroes, like Batman, in both video & graphic novel form. It’s still a challenge to get him to read “chapter” books. He sometimes talks about writing endeavors he wants to pursue but hasn’t followed though very much.
He’s been doing light housekeeping at his Respite Care Worker’s apartment for small amounts of money. They also take back our pop can/bottle returnables for J to have some spending money. He is interested in purchasing some stuff for his room (bedroom/family room entertainment area) & is actually talking about saving up money to make a purchase–this is a real first in his life. He hosts some hangouts with friends down in his room & that is usually a good time for everyone. Most times these are friends of his siblings more than his personal friends so his social life is fairly limited.
He pretty much stopped attending the Wednesday evening special needs fellowship event at the Arkay facility on Eureka & that used to be something he really enjoyed. He attended “The Misfits”, a monthly meeting of high-functioning kids (mostly guys), in January. He’d met some of these guys & made friends with some at a Christmas party at his doctor’s office. I hope to get him back to that group but he chose not to attend in February and the March meeting overlaps the State Games weekends, so it remains to be seen. It’s very challenging to get him to try something new & get him through the upheaval of dealing with change. I hope he’ll go back to the meeting, get more contact info for at least a couple people, & eventually spear-head a bowling outing at LifeBridge Church for free bowling in the semi-near future…
In the medical & medication arena he is doing pretty well & things are stable. We’re still in the transition period for obtaining his meds so that is in process. So far it’s going relatively well. Once we’ve gotten Each of his meds under the new insurance protocols it will be hopefully a stable process going forward. It still remains to be seen, since we’ve received some literature in the mail from the insurance company that seems to contradict what we’d previously been told, sigh…
Speaking of meds, I just finished the Research Study I was participating in on a couple of Diabetes medications. This was a roughly 6 month study so I’m going back on my “typical” medication to treat this condition. I may look into another study or two to participate in, we’ll see…
I am also gearing up to do a job search (once I get our taxes done). It’s been a bit of a convoluted process moving forward that happens in fits & starts. I would appreciate prayer for this pursuit for God’s favor, timing, direction, & will to be done here. In a recent online search for Part Time jobs for which I may be qualified there were a variety of positions of interest, including: Christian Counseling; Educational Advocacy; Social Worker positions in medical, therapeutic, hospice, or grief services; Case Management; Professional Support & Development (based on the Myers-Briggs Type Indicator, something I did outside research into during my education); Residential Therapeutic Management; & even Hospital Chaplaincy. There are pros & cons to the various options between distance, pay, hours, stress, benefits, qualifications, etc. Some of these positions touch on areas where I have unresolved areas of “trauma” & I wonder if trying to work in the field might be overwhelming…Anyway I would appreciate your prayers as this process moves forward, theoretically.
There are a couple of other work related prayer requests within our household but I’ll leave those as a general prayer request for God’s guidance for each person contemplating entering that fray (again).
Micheal has been having a challenging time since his boss, Grayson, died suddenly. For a few weeks work was really intolerable for him. He has been mightily blessed in his worship endeavors at Life Bridge Church. Playing his bass there & in his relatively new band, Interstate Revival, have been a bit of a life line for him during this season of grief & transition. His band has had gigs on a roughly monthly basis & are getting some internet radio play & have a prospective manager wanting to take them on to get them more concert opportunities. Please pray for God’s will in these areas.
M & I just had a mini day-trip to hang with his hunting buddy Pete & his wife Kristen. They live near Port Huron & we got a bit of a tour of the area, lots of historical info, a nice meal near the Blue Water Bridge (with a view of the Saint Clair River), & a jaunt to the edge of Lake Huron at a beach park their family enjoys during warmer seasons. The lighthouses & ice formations were nice to look at. They even sent us home with a dozen “farm fresh eggs” from their daily retrieval, in 3 or 4 different colors! We hadn’t had a time of fellowship with friends for a long time so this was a huge treat!
Brandon has been very busy between work & outside activities. He usually gets overtime at work most days & has even had to go in on some Saturdays, with the same 6 am start time as he has M-F. He has been working on the Lighting Ministry at his church at WSU & is on track to go on a Missions Trip to Guatemala (I think) sometime next month. He’s been pretty active on a couple of indoor soccer teams & has further soccer endeavors planned when this season ends. He’s been pretty regular at a guys’ Bible Study through his church & also regularly participates in various service opportunities generated by his church in Detroit. Oh, he also shared some of his poetry at a couple of venues to good reception & reviews! He was hoping to try out for a musical comedy theatrical production but the tryouts overlap the missions trip, so unless he is given grace that hope will likely not materialize.
Clarissa is enjoying school this semester, especially Ballet, Acting, & Geology classes. She’s even thinking of looking into Geology as a career (funny since both Michael & I have strong science backgrounds in our training, education, & thought processes). She continues her Small Group Leadership with InterVarsity but this may be her last year to do so. She’s been working diligently on guitar & now ukulele (a birthday gift from Nathaniel & Tara) & writing many worship songs. She continues to sing on the Worship Team at our home church & has sought other music opportunities further afield. She sometimes attends a Bible Study through our church but has been a bit hit or miss with that. Her social contacts have been much diminished since she’s been attending Henry Ford versus U of M Dearborn. She used to regularly interface with the InterVarsity gang at UMD but now only gets to the hang out zone periodically & briefly on her class days, which are Very Full.
Nathaniel is learning to work Sound at Life Bridge, an opportunity that Michael helped to generate. He & Tara both play soccer on one of Brandon’s teams & also attend Bible Studies through T’s old church–kind of like their second family. Michael gets to speak with N practically daily in ordering parts from N’s business, some of which are actually installed by Brandon in the technician arena…small world.
Well, I’m sort of running out of gas so will wrap it up here. Thanks for joining us in the journey. God Bless YOU & supply All you need according to His Riches in Glory in Christ Jesus!!!
This is about the second most recent Nephrology Visit (not the one that occurred while Michigan was only beginning it’s decent into tyranny & madness under the jackboot of Governor Gretchen Whitmer. So this was the last time we were at U of M when it was acting somewhat like its “normal” self. All the visits surrounding the recent hospitalization were during more stringent “pandemic” measures, though thankfully lesser than they had been or I could never have even been in the room with Josiah)…I’m not italicizing the stuff below because it inhibits the way I set the info for ease of access…
March 12, 2019 Nephrology Visit
Journal entry by Valerie CURREN —
Good afternoon to all. Josiah & I are back at the University of Michigan Hospital for his appointment with the Nephrology Team. We saw the Doctor, Dietitian, & Social Worker, in that order. Before the scheduled appointment we got his liver labs drawn. There was a lab very near this particular clinic, both of which were very near where we parked so we actually made it to the appointment Early–any of you that know me personally know that is a pretty rare feat!
We don’t have the lab results yet but hopefully things will look decent overall, especially in regards to liver function, given my inadvertent lowered dosing of J’s anti rejection meds recently (I detailed this a couple of journal entries back)…
We had a nice & friendly discussion with the doctor. She spent a decent amount of time with us & there were a couple of pleasant personal details shared amongst us all, including faith. She printed off a graph showing Josiah’s Creatinine Levels from 8/09 to 12/18 (the last labs yet available to her). There was a marked spike during his transplant period in 2013. Since then this measure is slowly trending upwards, which is somewhat normal with aging, though the current “normal” range should carry J to age 40. There were a couple of readings outside the normal range, too high, but she wasn’t overly concerned since one’s hydration can really skew the results. Since late 2016 virtually all readings are above 1.0 with the optimum range being 0.7-1.3. This is something they continue to monitor & can be a good indicator of the degree of “kidney injury” one is dealing with.
With kidney transplant patients the Creatinine can immediately indicate rejection issues. There’s no such straight-forward measurement for Liver Transplant Rejection. Because of this she wants to proceed slowly with any potential changes so as to ensure no unnecessary liver problems. She’d like to see Josiah weaned further down on the Prograf, or preferably off it, for this is a med that is particularly hard on the kidneys. I told her that the adult transplant doc wasn’t yet open to the completely weaning off Prograf (she doesn’t know of One patient of his on a weaning off protocol), though he does support reducing it. I suggested that we could perhaps pursue a different anti-rejection drug but she didn’t think there were others for liver. I thought the Liver Transplant doc had indicated that other meds were possible, but my memory could be faulty here. If we talked about other anti-rejection meds w/Liver then there was probably a reason why they chose to continue on with Prograf, I just cannot currently recall…
She indicated that one of his BP meds, Clonidine, is pretty hard on the system. She’d like to get him off this med all together if his BP can be maintained stable. He currently takes 0.1 mg Clonidine in the AM & the PM. If he can have at least 3 consecutive BPs at or under 120 she is willing to either remove one pill a day or put him on a 0.1 mg Clonidine patch, apparently the med via the patch is less hard on one’s system. I have some of those patches left from before so have her OK to make the switch pending appropriate BPs. I’m not sure if the patches we have are at the 0.1 mg dosage or not though, so we’ll see. J used to wear those patches before the transplant to get a transdermal dose of that med. Back then the patch would go on for a week & we’d have to shift locations because it tended to irritate his skin. I mostly put it in various places on alternating shoulder blades where it was difficult for him to reach. We had to remember to remove them before certain procedures for the foil backing could cause a fire, like in the MRI, I believe.
Anyway this will/should force J to get back into the swing of monitoring his BPs more. He’s been Very non-compliant for months now in taking BPs so I didn’t have any data from the past 6 months to share, a first for a Nephrology visit. If he gets to wean down or off the Clonidine then getting more regular BP readings will be crucial. I’m going to ask him to bring the BP machine back to the dining room from his bedroom to assist (& even monitor) his compliance. Please pray for Josiah to be more compliant with monitoring his Blood Pressure. Please also pray that weaning him down &/or off Clonidine &/or Tacro can happen without jeopardizing his health.
The doctor continues to want Josiah to drink more water regularly & to watch his salt intake. He had an episode about last week where he drank a whole 2 liter of off-brand Mountain Dew (has lots of caffeine) over the course of one day. This ended up dehydrating him to the point of uncomfortable urination. Hopefully he learned a lesson & won’t do something like that again, but who knows…he’s made no promises (kids mimic what they see, hmm?)…
This doctor wasn’t on the list to get regular access to or perhaps direct reports on his labs when they are drawn. She was planning to work with her nurse (which we didn’t see–we virtually Always see a nurse before a doctor comes in!) to ensure that is corrected. She didn’t at this time want to add anything to the standing lab orders from Liver Transplant…
She really wants us to get hooked into the Patient Portal. Every clinic visit upon checkout they have printed off an access code to set up a patient portal account. Perhaps at Josiah’s last U of M visit I badgered him into signing up…but neither of us has looked at the Portal since that one time visit. Apparently most of her young people have their Portal accounts managed by their parent, even those that aren’t disabled, so she really encouraged me to get on as Josiah’s proxy (I think) & keep her apprised of the Clonidine & BP info, etc., as needed.
She was interested/concerned about how Josiah spends his time. We talked about sports (Special Olympics), Bible Studies with Brandon, worship & prayer (forgot to mention listening to sermons & scripture), movies & video games, activities with Hamzah his Respite/CLS worker, and chore activities around home. He still has limited social contacts which we’d all like to see improve. Apparently he & H are thinking of returning to that Wednesday evening special needs hangout. There also is another “Misfits” meeting this Friday that I hope he’ll be willing to attend.
The Dietitian spent some time with us mostly focused on Josiah’s eating & drinking habits, as one would imagine. She asked about his salt intake & we really have no idea how much he gets.
She showed J an app for his phone called NutritionX & demonstrated some of its features on her phone. J downloaded the app & we are planning to have Clarissa consider getting it too (she’s been working pretty hard lately on improving her diet & exercising–someone in the family has to get it together in that arena!) so she & J could help each other out a bit there. If Josiah ends up using this app to help keep track of his sodium intake he’ll need to get skilled at calculating the volume of what he consumes. I guess this could be another goal to add in w/Hamzah as part of his Person Centered Plan. If he gets a good habit established here this may help him manage his salt & therefore his BPs better going forward.
His goal is to be under 2,000 mg Sodium daily, but preferably under 1,500 mg. This will be a considerable challenge!
She shared that he may need to make some lifestyle changes overall & that if the family can make some too it may help him. Though we’ve had more fresh fruits & veggies in the house lately it’s not clear how much Josiah regularly consumes. She encouraged him to look for lower sodium items when making purchases (things labeled that way) & to choose fresh over packaged or processed when possible. She gave him another copy of the sheet of high sodium foods to avoid. Unfortunately many of the things he enjoys & or regularly eats appear on that list. There’s a lot of work to do here I guess…
The Social Worker visited us last. Both she & the Dietitian had paper notes from the previous visit to refer to, a pretty unusual sight in this more computer based age. She asked about his coaching & Special Olympics endeavors. She also inquired about how he keeps busy & what he is interested in.
We discussed the employment arena, or lack thereof. We told her about the Peer Advocate job through the Guidance Center that he was hoping to do but is currently on a waiting list for. We told her how he wants to present himself professionally & possibly wear a suit or a button down shirt & slacks if he ever gets to act in that Advocate capacity. We also told her about how Clarissa is planning to get a summer job close enough to home for J to walk to so she can help him get his foot in the door employment wise. Because Special Olympics is starting up Softball Season soon Josiah is a bit leery of possibly getting into an employment scenario & messing up his sports schedule.
She wanted to know about Transition issues (going from being a kid to an adult & when considering Special Ed law this formally means a systematic process to assist a young person to prepare for post high-school education, employment, & independent living). Well…that pretty much got me going on the Case (failed Special Education Due Process Hearing Request Case we had in 2015-16) again & that almost got me emotional. OK I got into the anger side a bit and almost had tears fall too…
I told her how Josiah’s main doctor has told me that if I want J to have any kind of Transition I have to make it happen myself. I went into the fruitless slog with the special ed battle(s) & how difficult it is for me to dig into those type of topics (as in educate myself on what “should” be done) because it touches pretty close to the trauma of years of betrayal & illegality by the schools & no matter how much law I could quote, or settlements could be generated (like our first case), it was likely that no matter what we did nothing would change. I don’t know that I can muster enough mental, emotional, or physical stamina to take on this battle again. I told her how I feel guilty & hopeless & angry & frustrated & was afraid that my inability/inaction was costing my son but didn’t know really how to change anything…Michael literally put away my boxes & bags of paperwork about the Case & Transition (a key part of the Case) & it’s ridiculous to retread ground I’ve already tread but I cannot even come close to trying to physically access that material let alone mentally/emotionally process it.
I guess this is part of the evidence of the “Trauma”/PTSD that remains & stymies me on a number of fronts. The SW was going to speak with some colleagues who are more familiar with Transition issues & perhaps develop some referrals to Potentially assist us. I was direct in stating that even if she finds something I don’t know if I’ll have the stamina to follow through with it (to any large degree) & I doubt Josiah would be personally motivated. When she mentioned post-high-school education for the disabled he was like “I’m Not doing High School again!!!”…so this is a bit of an uphill battle.
I went on to state that I truly believed that the State of Michigan, at a minimum, was derelict in its legally mandated duties to the special needs students. If there were the right group gathered there is likely a Class Action Lawsuit waiting to happen. I referenced J’s primary care doctor who’d stated that she believed that the high-functioning (autistic?) special needs kids were the ones who were really getting the short stick educationally. These kids can sometimes function in regular classes (with supports) but still have significant challenges. In our local school district Josiah being on the Diploma Track meant that they pretty much stopped assessing certain needs & their version of “Transition Services” really just consisted of them writing down things we were doing for Josiah, like taking him to the library, as indicative of their compliance with special ed law–bizarre. The SW seemed to internalize some of the anger I shared before she left.
I told her about my cousin in Arkansas with 2 autistic sons. The oldest son graduated from HS & his dad wanted him to go full time to college–the dad is in a bit of denial about the severity of his sons’ needs. Anyway college was too much. The mom had her HS grad son tested & discovered he was functioning basically at a 6th grade level! Since Josiah has never completed Third Grade level math it is clear that in, at least, that arena his diploma is near meaningless…sigh. Anyway these issues are surely not confined to Michigan & may be a nationwide “crisis”…Many of you have heard various versions of this lament so sorry for not moving on well (if ever–mega sigh)…
So after getting this posted I hope to get that Patient Portal stuff going on. Then there will be some searching for other U of M research studies to participate in. The Family Resource Center staff was already kind enough to print off a document I need for doing our taxes. There are a few other “business” things I hope to tackle while we’re here then we’ll head home to catch up with Michael & Clarissa & see if there is any further news from Brandon in Guatemala.
I’ve been posting some updates about Brandon, Josiah, & some other prayer requests at The Conservative Treehouse Prayer Request page. There have been a number of deep & godly conversations there too. Please stop by & even participate if you’d like. I very much appreciate any comments you share at Caring Bridge but the CTH comments are more easily interactive so it’s better for keeping a conversation going. Requests for B & J start around halfway down the page:
Thanks for reading along, for caring about us, for praying for Josiah & our family, & for your encouragement. God Bless Each of You with His Abundant Grace, Peace, & Joy!
Here is the 2020 Nephrology Visit…
March 10, 2020 Today’s Nephrology visit
Journal entry by Valerie CURREN —
Josiah & I are back in Ann Arbor at U of M for another doctor’s visit today.
Today we voted in the Michigan Primary Election before coming to the hospital & got Josiah’s blood labs drawn before the clinic visit. We actually arrived Early for the appointment with all that preliminary business! Today is a multi-disciplinary clinic visit so things will take longer & potentially be more comprehensive.
Nephrologist: Josiah’s blood pressure & prior labs look good overall. She’ll call us if anything shows up on either the pending blood work (for liver but she uses some data for kidneys) or the urine analysis. She’s not going to put him on the Clonidine Patch, like we’d previously discussed, because he finds it too annoying & somewhat skin irritating–he’ll remain on the pill though. If he gets his BP’s down lower she may take him off Clonidine altogether as he’s on the lowest dose now. She would keep him on Lisinopril regardless because it provides some kidney protection for the Prograf kidney injury potential. If he has to go off Prograf because the Transplant Dr. wants to change things she wants to be kept in the loop & will order additional labs to see how he’s handling such med changes. If he gets consistent with his CPAP usage there is the possibility of getting the BP’s down, so that is an ongoing goal. I forgot to ask about where he is on the scale of Chronic Kidney Disease–oops. Since things are currently so stable she’ll see him again in a year. We also had a nice social interlude with her discussing some issues of faith & international travel & history–she is from India & told us about the vibrant Christian community in India that was founded by (doubting) Thomas in 52AD. She said Christianity has been there continuously ever since even though Christians make up like 1% of India’s population. At one point Josiah shared about how he & Rose have worked through some challenges (tomorrow is their 5 month “anniversary”). As he described how he tries to keep the lines of communication open between them the doctor remarked on how mature his thinking was in this arena for someone who is “only 24”!
Nutritionist: She wanted the low-down on Josiah’s eating & drinking habits. Apparently he’s been drinking like 2-3 cans of pop a day lately instead of the more healthy choices of mostly water. He’s going to try to limit his pop to 1 can a day & start using some of the drink flavor packets to make his water choices more interesting & enjoyable. She gave him a “heart healthy plate” diagram to illustrate how to best balance one’s diet. He can use this visual tool to remind him of better food choices. He still needs to work on lowering his salt intake & increasing the volume of vegetables he eats. She reminded him of a phone app that he got that can allow him to keep track of his eating habits. He’s going to try to “chart” his eating with this app for roughly one week out of each month so he’ll have some data to show her next time. Since his girlfriend, Rose, already keeps track of her own eating, she may be a good source of encouragement in this endeavor. He shared a bit about his Special Olympics experiences with her as well including how he & Rose met. He also shared some thoughts about having Rose over for a visit to our house the other day.
Social Worker: She was just checking in on how he is doing overall. She also asked some questions about what the doctor had said about his health to presumably check on his comprehension. He told her about his job, his girlfriend, & his blogging briefly. I shared about how his sister is now certified to be a “CLS (Community Living Supports) worker” & planning to work 1-2 shifts a week with him on various goals & how that change may require some adjusting to. I also suggested that one thing Clarissa could work on with him is food prep (& this could go as far as planning a meal, looking through grocery store ads to choose the best price option for shopping, purchasing, & then preparing the meal). I also thought that Clarissa might be a good option for helping to supervise Josiah & Rose in the kitchen together as they work on some real-world life skills. Josiah talked about keeping up with some exercise, like getting back to the gym with Hamzah, his plans for coaching football in the Fall, & possibly not doing another Special Olympics sport until soccer starts up (I would like to see him also participate in a Spring sport). He talked about his hopes of travelling internationally & sharing the gospel with people. He also talked about increasing his work hours to 2-3 days/week, assuming this won’t mess up his SSI too much. She gave him her business card & he thought that was so he could call her in case he ever “goes crazy” & needs the mental ward–she & I both reassured him that it was so he could contact her with Any needs he might have…hmm…
We went to the Family Resource Center, where I’m currently composing this update, but Josiah decided to leave his books with me & head to another part of the hospital where he gets better cell phone reception, presumably to call Rose. I’m planning on getting a couple of business items handled here today too.
In other news…
Michael is heading out of town for a long weekend in Dallas with his friend John. He is really looking forward to the hiatus from a too long winter. He’s been keeping busy between playing bass at church (LifeBridge, now called 2 42) & with his band. The band is recording again on another CD & just completed 4 tracks last week on their more bluesy style offerings. Please pray for his travel & fellowship–thanks!
Nathaniel is continuing to learn new skills on the sound board at the LifeBridge/2 42 church. He’s becoming very good at this activity & the new 2 42 vibe there has stepped this up as they even have a paid sound engineer on board there now. He & Tara are thinking of looking for a new home, likely still in Allen Park, as they ponder heading down the parenthood rabbit hole. They hope to keep their current home as a rental…All these changes could, of course, be bathed in prayer!
Tara is looking for new work, & this is a prayer need–please pray for guidance, direction, favor, & timing for a new job, which she hopes will be closer to home & personally & professionally fulfilling. She is having to put together a resume for the first time, as she’d previously been hired out of college/internship & has never done a more formal, professional job search. She continues to work in the church nursery at LifeBridge/2 42 & seems to like the new 2 42 vibe better there now.
Brandon is currently out on the Guatemala Mission Field again with his church New Life & a handful of associates. This is a return to the mission experience he got involved with last year. He could really use your prayers for the Lord’s intervention, protection, & provision for the Team & all with whom they interface. He thinks some of their time will be spent building & some tutoring. He actually packed some hand tools in his checked bag so that he can leave them with the Guatemalan’s when he leaves. He is supposed to be coming home late this weekend. He’s doing very well at work & really has grown into the job of Hydraulic Technician for the last year+…
Clarissa just returned home today early from a trip to New York with her boyfriend. I’m looking forward to hearing about their adventures in and around Albany. She dropped some hints to Michael via text (I don’t have a cell phone so I hear things 2nd hand) that at least one outing involved a cave. She is on break from college this week, so she’ll have some time to rest & recoup from all the traveling & perhaps work on her guitar &/or ukulele music or art for a change. Perhaps she’ll also have enough mental space to start a shift as Josiah’s “worker”–we’ll see. She’s hoping/planning to transfer to Wayne State for this Fall term. Please pray for the Lord’s guidance & favor in this process & provision financially & relationally as she hopes to get involved with InterVarsity at WSU. She continues to participate in IV both at Henry Ford College, where she currently attends, & U of M Dearborn, though she’s not in leadership this year. She is co-leading a Bible study on campus with a friend, which she enjoys. She continues to serve on the Worship Team at our old church & recently had such a pouring out of the Holy Spirit in/through her while leading worship that Michael got texted from another churchgoer to say how beautiful & powerful God’s work through her is!
I’ve been on a genealogy reading kick so have 3 books to use to put various skills & tools into practice. It’s also dreaded Tax Season time & I need to get diligent about getting our taxes done. This year Brandon actually took the initiative in that domain & got his own taxes “done” on his own initiative. I’ll still need to give Clarissa a hand & help check over Brandon’s work. I’ve also been enjoying some forays online in the blogosphere in a very highly skilled & highly informed community that I feel privileged to share cyberspace with. They have opened my eyes to many arenas that I’d never given much consideration to before…which has been quite fascinating given the major twists & turns of Donald Trump’s epic presidency!
Before we know it it’s going to be time to head Up North to the Cottage for Memorial Day & the fun of Summertime can get in full swing again!!! Josiah really hopes to get Rose up to the Cottage at some point, so we may end up making a special trip up there, perhaps even just the 3 of us, at a time when the place won’t be as overcrowded with so many family members.
But before that season we’ll be celebrating Mom’s 80th Birthday in early May (we celebrated Dad’s 80th last year by doing the Mackinac Bridge Walk). We also just saw my youngest brother reach his 50th Birthday…but we haven’t managed to yet gather the clan in celebration. Too many people have either been under-the-weather or overly busy. I was an under-the-weather “victim” this past week so ended up missing Josiah’s final Special Olympics tournament this past weekend. In fact Nathaniel was the only Curren who attended because B & C were already out of town & M was recording. Thankfully both my parents were able to attend as did my baby brother Mike & one of his daughters. They all got to enjoy a fellowship meal after which was a huge blessing for Josiah, in particular.
Last month we actually got to celebrate my birthday twice. First Michael put on a righteous surf & turf feast in our home & all Currens got to participate, a very rare treat. I inflicted some historical tales on that captive audience & no one directly let me see their eyes roll up in their heads (what a gift!). Later Mom & Dad took out as many Currens as were available to a new (to us) restaurant “Ford’s Garage” where we all enjoyed some great food & fellowship. We had M & D come over to our place afterwards to watch a Netflix film I’d wanted to share with them “The Guernsey Literary & Potato Peel Pie Society”. This is such a lovely film & both my parents thoroughly enjoyed it–score! It was nice to share such a beautiful piece of motion picture art with them!
OK, I’ve gone on way longer than intended & now need to turn my attention to the business I need to address here at the FRC. Hope you are all doing well & enjoying the recent hiatus from Winter’s chill. God Bless You All, thanks for stopping by, & thanks for your prayers & encouragement.
Josiah continues to do very well & we are all Very Thankful for this ongoing Blessing from the Lord!!!
The remaining updates at Caring Bridge really involve the recent rejection hospitalization so are rather too fresh for me to cut down very well, not like I’ve abbreviated the above stuff very well yet. In fact, though this section was supposed to be more about Mama Bear it’s very hard for me to just directly share where the stress points are for me. I guess leaving much of what I’ve written about before is to Imply multiple sources of stress & upheaval within the family which are all contributing factors into the “complex PTSD” & general challenges of being a special needs mom.
OK I’m going to leave this post pretty much “as is” now because I’m almost going into “shut down” mode. This post inadvertently slipped into a more lengthy documentation of many of the challenges in caring for Josiah’s needs post Liver Transplant, since I began writing things up at Caring Bridge. It wasn’t my intention when I started this post, but here we are…so if you managed to actually get this far down the “page” Thank You for hanging in there & coming along a bit for this ride that is the wild adventure of caring for the highly complex & unique needs of my precious son, Josiah!
Thanks for stopping by. Please lift Josiah to the Lord as he continues to heal from the bout of rejection that put him in the hospital one week ago today. God Bless!