Tag Archive | Prayers for Conner

Sharing from 2015, Prayers For Conner

Source: Prayers For Conner

This is an older post but tells of some of the details of a young family experiencing their baby’s heart surgery.  The minutia are different from our experience, yet in many ways the story is the same.  I’m so thankful that other writers share from their hearts their experiences and their perspective.  This “Prayers” posting was written by Conner’s grandmother–and what a loving, godly heart she exhibits…

ConnerJune20174

 

“Added note. To all who were here with us when my grandson Conner had his heart surgery almost two years ago now, who have asked so frequently how he’s doing, I added his picture. Yep, he’s one of the next generation of fearless daredevil boys in the family. His favorite thing is climbing and jumping, which he’s in the process of doing here. Thank you all for remembering him.” 

This update on Connor, and his picture, is from his Grandma’s recent posting (that is also well worth the read) here:

Thank You God, For Men. Real Men.

Image result for heal your heart scripture

Image is from a Bing.com image search for “heal your heart scripture”

It is a blessing to me, and hopefully to you as well, to be reminded of the Lord’s faithfulness in delivering other people out of their challenging circumstances.  I know nothing of this family beyond the two posts referenced here…but I know the Joy of seeing a heart surgery child running, climbing, and in general just being a boy!!!

Blessings,

Valerie

 

Image result for heal your heart scripture

Image is from a Bing.com image search for “heal your heart scripture”

Update June 23, 2017

Please check this post at my son’s new blog for further info about Conner & his family in the Comments Section.  Thanks!

https://josiahsfreakshow.wordpress.com/2017/06/21/josiahs-first-post/

Here are those comments from Josiah’s site, as of 11-1-18…

20 thoughts on “Josiah’s First Post”

  1. Menagerie

    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.

    Liked by you and 2 other people

    1. 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.

      Liked by you and 1 other person

  2. Menagerie

    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.

    Liked by you and 2 other people

    1. 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

      Liked by you and 3 other people

      1. Menagerie

        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.

        Liked by you and 2 other people

        1. 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…

          Liked by 2 people

  3. Pingback: Sharing from 2015, Prayers For Conner | Special Connections
  4. 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.)

    Liked by you and 1 other person

      1. 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.

        Liked by you and 1 other person

        1. 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…

          Liked by 1 person

  5. 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?

    Liked by you and 1 other person

    1. 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.

      Liked by 2 people

      1. 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.

        Liked by you and 1 other person

        1. 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…

          Liked by 2 people