from a Bing.com image search for “U of M Hospital”
So my son, Josiah, and I returned to the University of Michigan Hospital today because I’d rescheduled his MRI of the head (aka Brain Scan) from yesterday afternoon to this morning, so he could participate in a special needs social event last night. We rarely have back to back hospital runs so this was kind of “fun”…
from a Bing.com image search for “U of M Hospital”
from a Bing.com image search for “who heals you of all your diseases scripture”
- Up late, running late, getting to the hospital “on time” cause we left a cushion!
- No traffic “cops” at the parking structure entrance like yesterday (when a screaming motorist & screaming parking lot “enforcement” personnel made me think someone just might pull a weapon–it’s Detroit area, after-all–& for once Josiah decided to Not escalate an already tense situation!)
- Doing loop-de-loops in the parking structure looking for a space…and Josiah feels some dizziness coming on (he’d already complained how he got dizzy at his recent Liver MRI & was concerned about dizziness from the procedure)
- Offering to drop J off near the entrance we might use (depending on what level I actually get to park on) & he finally takes me up on the offer–so hoping he actually follows instructions & waits in the right place–praying all the way…
- making our way through the various “buildings” (interconnected) of the hospital complex to the appropriate elevators & descending to sub-basement B-2
- walking the halls to the Adult MRI department (his Liver MRI was in the Mott Pediatric part of the hospital the other day) with Josiah getting spooked (it looks older & less kid friendly here) and saying that it looks like we’re going to the morgue (where we’ve never been but maybe he has in video games or shows?)
- filling out the “abbreviated” pre-procedure forms (3 pages)–thankfully they don’t ask about All Organ Systems, like the pre-op paperwork, for that level of recall is really exhausting
- Josiah wants to fill out his own forms (which is great)–I finish page one & give him page 2 and he gets stumped right out of the gate when descriptions of prior heart surgeries/devices are needed–sigh–I want to support his independence, but I know these things better, can write in an adult hand (his printing is large & grade-schoolish), and he’s already said he doesn’t want talking so wouldn’t appreciate the amount of verbiage needed to “coach” him here…I complete p 2 & he refuses p 3…
- no problems in changing, getting a locker (I keep the key for him), nor getting an IV–I’m not allowed back with him (he’d requested me to accompany him at the Liver MRI) and he actually goes along with the staff without issue!
- I remind the technician that he got dizzy when they moved him in and out of the other MRI machine & she says she can accommodate him there…since he didn’t complain of dizziness afterward it appeared like things went OK!
- sitting in the waiting room working on a book (I finished), a sudoku puzzle, and a word search…then perusing a number of photo based magazines where I’m bombarded with guilt-trips of the leftist agenda ad nauseum–sigh…no napping…a TV blasts out of sight while trying to sleep & I recognize Chip & Joanna Gaine’s voices from the Fixer Upper TV show…but too tired to attempt to watch this
- he’s done & we depart without issues & decide to swing by the “interfaith” chapel that’s just outside the elevator on our return trip to the 2nd floor
- We are alone in the “chapel” so we search for any signs that Christianity is even one of the faiths that might be represented in that room…there’s no cross visible, but prominent Islamic paraphernalia, slightly reserved Judaism items, and eventually a “New Testament with Psalms” Josiah unearths under one of the seats
- Josiah reads a Psalm from the lectern (we’re in full view of some security camera–yikes, does it have audio?), I sing a version of the 23rd Psalm aloud. Josiah and I both pray aloud for many things/people “in Jesus’ name”. Josiah begins singing “How Great Thou Art”–a song that always reminds me of my father & the first church of my childhood–solo (he asks me to Not join in) when a swarthy looking young man enters & sits adjacent to the Islamic prayer rug; J voluntarily stops singing & we decide to leave to give the other person privacy
- Traversing 3 different buildings to get to the Family Resource Center, where we use the computers & partake of complementary snacks/drinks
- strike up a conversation with Cameron & his mom about Cameron’s medical needs (brain tumor found 4/30, two surgeries, stroke, etc)–he’s wearing some type of helmet to cover his missing skull…I offer to post his prayer needs on my CarePages medical blog & they agree…we give pointers about living at the hospital etc.
- J & I both work on both CarePages.com and on WordPress.com blog accounts and attend to some email business at adjacent computers
- I decide to use one of the consult rooms to call my husband (I don’t have a cell phone) & they are now locked, a new development since my last usage
- get a staff person to let me in and complimenting her on her new hairstyle leads to an in-depth discussion about her recent Cancer & Heart Attack scare. We share various stories about medical issues, hospital employment (in my former life), and dealing with overwhelming emotions. We go on a bit about Transplant issues, me from the family perspective & her from working as staff in an organ procurement organization. She tells of a family that she turned down as a transplant donor because they didn’t want any of their son’s organs going to any N-words–Wow!
- we’re interrupted by a volunteer & later an MSW co-worker so we never “finish” our conversation…are those discussions ever really done?
- Quick phone call with my husband, who’s still at work
- J & I wrap up computer work & head up to the 12th floor for Skyline Cafe, the Thursday evening complementary meal & music offering sponsored by Delta Airlines & managed by Bob (musician) & Byron (social worker)
- We assist two different families with in-patient kids on IVs in the elevator
- We enjoy nearly an hour of acoustic guitar & vocal music as we eat pizza, etc
- after the event wraps up we speak with Bob & his wife Tracy about my husband’s band, The Lively Pelts, possibly participating musically sometime–I’d cleared this planned discussion with my husband previously–(Bob says Skyline happens Every Thursday of the year, except Thanksgiving)…
- discover that Tracy & I met before as she’s actually the Pastor at the church kitty-corner from our own church–wow–small world (& I’d almost applied for a recent job opening there)…
- Josiah tells some tales from transplant & beyond & several eyes tear up…
- we finally head home during a rainstorm with just enough time to spare to take care of one errand before that business’ closing time; I get soaked to the skin…
- I send Bob the promised email about the Pelts…and we await to see if God might open yet another door in our lives…
As you can see, even a “simple” day at the hospital can get pretty involved…and exhausting. Josiah & I both did decently and had an overall good time, which was capped off by the blessing of Skyline Cafe, a pretty rare treat for us nowadays…
Well thanks for stopping by and sharing a bit of our experiences. Blessings, Valerie
from a Bing.com image search for “who heals you of all your diseases scripture”
PS Please consider keeping Cameron & his family in your prayers as they travel a new special needs pathway…I’ve written more about their situation here if you’d like more details:
http://www.carepages.com/carepages/JournalingForTheJazzman/updates/3856615
from a Bing.com image search for “gently leads those with young scripture”
Great job, Josiah! I can’t wait to see what you have to say and share here. God Bless You and your endeavors on the Internet.
I Love YOU!!!
Mom/Valerie
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Reblogged this on Special Connections and commented:
My Special son, Josiah, is starting his own blog here on Word Press. Please stop by and give him your support & encouragement…Thanks, V
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I’m looking forward to hearing more of your story Josiah. My four year old grandson has recently been diagnosed as autistic. He has been in speech therapy for several years and also has occupational and physical therapy. Next year he will attend pre school at a school for special needs children.
Great job on your first post. Blogging can be a very rewarding outlet, and for some who work very hard at it, even an occupation.
I wish you great success in your endeavors.
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Hi. Thanks for reading my blog. This is Josiah. How”s your grandson Conner doing?
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The Autism diagnosis can lead to quite a wild ride. We are quite familiar with the Therapies, Speech, PT, & OT, ones he still should be receiving. Josiah used to also receive a form of OT called “Sensory Integration Therapy” that helped with many of his sensory issues.
Depending on the severity of your grandson’s needs there are quite intensive therapies (like ABA–Applied Behavioral Analysis) available that are theoretically Required to be provided by Special Education. I believe the Pre-School portion of IDEA (Individuals with Disabilities Education Act) is called “Part C”. If your family hasn’t yet geared up for special needs advocacy I would strongly encourage you to arm yourselves for “battle” here. Of course my perspective is colored by years of illegal abuses of special ed law from our local school system…
Here is a source of helpful advocacy info, a jumping off point, depending on how deep you want to engage the rabbit hole here:
http://wrightslaw.com/
http://www.wrightslaw.com/info/autism.index.htm
http://www.wrightslaw.com/info/ei.index.htm
Supports & Services vary widely by state. Where we live in Michigan there is an organization called Community Mental Health…Josiah used to receive the above therapies through them because of Developmental Disabilities (and still could if we could work out insurance issues). They also were involved in The Early On Program (then birth to age 5) and still provide Case Management services and Respite Care for our Family.
It’s really important to get good/great information about Autism (from my perspective) and EARLY INTERVENTION IS CRUCIAL. We didn’t get Josiah’s Autism diagnosis early and dealt with a school system in complete denial of his spectrum issues so we have a lot of baggage in this arena. Anyway, having Great Professionals on board is vital, like Behavioral Pediatricians.
Here’s some general overview of some necessary autism-related disciplines:
Behavioralist/Behavioral Pediatrician
Autism Waiver Program Center
Neuro-Psychologist (Neuro-Psych Testing is Crucial too–way beyond scope of school testing)
Communication Disorders Center (we never went due to funding/insurance probs)
Specialty Learning Centers (ditto above note)
Respite Care, in home & center based
Therapies (PT, OT, Speech, Sensory Integration, Music, Art, Group, etc)
Sensory Diet
Social Work
Counseling
Psychology
Medication Management
Dietary issues (we never went this route, but some people swear by it)
Tutoring
Sib-Shops (a siblings of special needs program, normalizes experiences for families)
We are blessed to have a local physician who is a strong Christian and has her entire practice dedicated to managing complex special needs children & their families. They try to provide a “Medical Home” there and are quite involved in medical, therapeutic, educational, & social interventions…perhaps there’s someone similar in your/their area?
Well there is A Lot of info out there. It’s probably best to get connected to people going through similar experiences relatively close to home (something I never did). It’s also key to get some degree of Prayer Covering depending on what battles/issues you might face.
May the Lord equip, encourage, empower, and establish you and your extended family as you enter into the fray in a completely different way. Autism is a universe unto itself, each child being incredibly unique and yet “fearfully & wonderfully made”. Enjoy the Journey…You are all Blessed Beyond Measure and now members of the exclusive & exhausting club of Families Impacted by Autism…
May the Lord give Grace, Peace, & Joy to you and yours,
Valerie
I could give you the actual names & disciplines of people involved in Josiah’s Autism care (in MIchigan and often affiliated with the University of Michigan Hospital) so that your family could get referrals from their departments to high caliber people in your area, if you’d like. Please email me directly at
ValerieCurren@sbcglobal.net
if you’d like that type of detailed info.
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Conner is fine and healthy now, and he runs us ragged trying to keep up with him. Although it was a very scary experience for our family, and it is never a minor thing to have open heart surgery, we were.very fortunate that Conner’s problem was one that was easily repaired in one surgery. He had holes in the upper and lower chambers of his heart. One would have grown closed by itself eventually, but the other was too large, and the holes from one side to the other didn’t line up, so they had to do surgery.
The doctors said Conner is now fine, and should have no further problems with his heart. He goes to see a cardiologist once a year to get checked out.
Thanks for asking about him. There is a picture of him on the post your mother shared on her blog.
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Sounds like Conner had a VSD (Ventricular Septal Defect) & an ASD (Atrial Septal Defect)…like Josiah did, among other things…right? Josiah’s first heart surgery at 2 months & 4 pounds was that VSD repair with a Gortex patch. Later when Josiah was 4 1/2 he had another open heart surgery with a “Sub-Aortic Stenosis Resection with Myomectomy”–basically they removed a hardening of the tissue and a small amount of heart muscle just below his malformed aortic valve. He has a Tri-Cuspid rather than the normal Bi-Cuspid Aortic Valve.
His Aortic Valve is still being monitored as well as the Aortic Root/Arch which is somewhat dilated so will likely involve another Open Heart Surgery…eventually.
Will Conner also have to be monitored by Pediatric Cardiology for the remainder of his life? If so, how frequent are the visits? Josiah’s never been less frequent than every 2 years…and when things were fairly dicey we were seeing Peds Cardiology every 3 months…
Thanks for reading Josiah’s blog & communicating with him! This means so much to both of us!
Blessings,
Valerie, Josiah’s mom
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Conner sees the cardiologist once a year, in Chattanooga. The Vanderbilt doctors said there was no need for him to come back there unless something very unexpected happens. If I remember correctly, they are going to see Conner yearly at least until he is school age, and they may change that then.
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Well hopefully things continue to improve in the Heart arena for your family. Since we were told Josiah would Always be followed by a Pediatric Cardiologist I guess I assumed that was a typical Heart Baby scenario. Maybe that depends on the nature of the Congenital Defects…some repairs are lifelong. Great that they can see doctors (presumably) closer to home…One of the reasons we moved to Metro Detroit from Northern Michigan was to be nearer to Josiah’s Specialty Care at U of M…
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Josiah I’m going to put a link to your post here at my SpecialConnections blog, see below for the page, so people can follow on about Conner & his family. I just wanted to let you know.
You’re doing a Great Job with your new blog!!! Keep up the good work.
I love you,
Mom/Valerie
https://specialconnections.wordpress.com/2017/06/22/sharing-from-2015-prayers-for-conner/
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Hi Josiah! I am a friend of Menagerie’s who also blogs at the Tree House. I grew up with a younger brother who was diagnosed with autism way back in 1956. Boy….things were a lot different back in those days as far as diagnosis and treatment. I am just amazed and delighted to hear about all the opportunities that are being offered today.
I look forward to reading more and learning more about you.😀 (Yeah…I’m one of those people that like to use the happy faces.)
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This is Josiah’s mom, & I actually don’t even know how to use those happy faces!
Have you written about autism in your family, for I’d love to partake of your perspective…
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Hi Valerie! The happy faces are easy-peasy.
1. Go to the Dashboard on your WordPress Administration page.
2. Scroll down to “Settings”….it’s the second option from the bottom.
3. Select “Settings”, then click on the second item, “Writing”.
5. On the top of the page you’ll see “Formatting”…..click on the first box that says, “Convert emoticons like 🙂and 😛 to graphics on display.” This will allow you and your readers to type in the semicolon, dash, and right parenthesis that makes up the basic smilie.
As for my perspectives on Autism, I don’t know how much I can contribute that would be of use. I’m thinking what I do have to say would probably be more appropriately said on your main blog. I’ll pop over in the morning.
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Thanks for all of the above!
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I never did find “formatting” under item 4/5 from your instructions…so didn’t quite get to the emoticons option. Perhaps they’re not available when one is only using the “free” wordpress service? I do appreciate the suggestions here though…
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Hi Josiah! I’m a friend of Ad rem and Menagerie. Will be interesting to follow your blog. I have two grandsons – one in high school and another in middle school in Illinois. I live in Michigan too.
My older grandson had a malformation of the skull when he was a baby, but it fortunately didn’t require any intervention other than braces on his teeth a couple of years ago. Somehow, everything worked itself out as he grew.
What is your favorite thing to do?
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Hi. This is Josiah. My favorite thing to do is to play basketball.
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Hi Stella, this is Josiah’s mom, Valerie. Josiah has a Great-Aunt, my dad’s sister, in Illinois. She lives in the Chicago area, Naperville and usually comes to Michigan to see our family at my parents’ Cottage in Gaylord. We hope to see Aunt Pat near the 4th of July…hopefully she’ll get to watch the annual fireworks over Otsego Lake with us but we’ll see since this trip she’s staying with her late husband’s family a few miles from the Cottage.
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My family lives in Oak Park, IL. My daughter and SIL both grew up in the Detroit area, and I lived in Illinois myself for about ten years (my daughter was born there).
We normally spend July 4 at St. Helen, not too far from you, at my SIL’s family’s cottage, although I won’t be there this year. My older GS’s birthday is July 3, and we always have his birthday party in St. Helen, but he is in Japan on an exchange program for six weeks.
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Blessings on you & yours as you celebrate Independence Day perhaps further afield. I was out of the county for the 4th in the late ’80s on a Missions Trip in Liberia, West Africa and it was extremely strange to not be in America with celebrating Americans for that patriotic holiday. It does make you realize how we blessed we are in this country though…
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