Teaching Jeremiah, A Journey into the Mind of an Asperger's Child

Feb. 28, 2009

For the Joy Set Before Me

We were at a party (Tastefully Simple) last night at my friend Lynn's house when Jerry gave us quite a scare.  He was in watching Jonathan (his brother) and Dustin (Jo's friend) play a video game when he looked at Dusty and said, "I can't see Dusty!"  At that he started to lean over and his eyes just closed.  Dustin caught him as he was about to fall off the bed and Dustin and Jonathan tried to get Jerry's attention, but to no avail. 

Dustin opened the bedroom door and said, "Miss Tara, there's something wrong with Jerry."  John went in and got him and brought him out into the living room.  He put Jerry in my lap and we tried to get his attention, but he was unresponsive.  His mouth was shut so tight, his lips were turning blue and he was as white as a sheet.  His eyes rolled back so you could barely see any color, just the whites.  He didn't move either.  Lynn called 9-1-1 and within minutes, the ambulance and fire rescue were there.  They stuck his finger to test his blood sugar and took his blood pressure.  As Jerry came around, after five minutes or so (that felt like fifteen), he became very clammy, disoriented, and even more pale.  It was suggested that we take Jerry to the hospital and so I rode with him in the ambulance and John followed close behind.

Once we got to the emergency room, Jerry was very lethargic, still pale, and began with some dry heaves.  After triage, they started an IV and he soon fell asleep.  They did a complete blood work-up, a CAT Scan, and an EKG, all of which were normal.  His potassium was a tad low, but they said that's common after an "episode".  Because he didn't regain his color or his energy within a normal amount of time, he was admitted to the hospital.  John went home around 12:30 a.m. so that one of us would be well-rested for the other three kids the next day and I crawled onto the stretcher with Jerry for a nap.  We finally got into a room about 2:30 a.m.

It was a restless night to say the least with the blood pressure cuff activating every half hour or so, the lights and intercom out in the hallway, and the occasional nurse coming in for temperature and blood pressure.  At 8 a.m., an EEG technician came in to begin the process of getting a brain wave reading.  Here are some good before and after pics.  As you can see, he handled it well for the most part.  We joked that he looked like E.T. and that made him smile.

The torture of this procedure was that Jerry was hungry, unmedicated, and required to close his eyes and remain totally still for nearly an hour, during which time they brought his breakfast tray in for him to smell.  Needless to say, his smile was gone and he was quite agitated with the very friendly EEG technician by the end of that hour.  Scrubbing the glue and red pencil marks off his head afterwards really put him over the top!

John and the kids joined us soon therafter however and smiles were back.  John then left with Michaela because they had tickets to see Third Day at the Strawberry Festival and Aunt Wendy joined us for the remainder of the afternoon as we awaited the neurologist's reading of the EEG.

Diagnosis.....Rolandic Epilepsy.  There were spikes in the waves at the front of his brain that indicated this.  It is more common in boys than girls, comes on in early childhood, and the majority of sufferers have no further signs of it after five or six years.  Until then, no swimming, bike riding, etc... unsupervised and no tree climbing or other daredevil boy activity that could result in serious injury if he had a seizure in the midst of it.  We have a new prescription for Trileptal that he'll need to add to his medicine regime twice a day and also a prescription for suppositories should we catch him in the middle of another seizure.

So why the "For the Joy Set Before Me" title to this entry?  Our Pastor's wife (affectionately known as Momma D) called me with Hebrews 12:2 this morning.  It says, "Let us fix our eyes on Jesus, the author and perfecter of our faith, who for the joy set before him endured the cross, scorning its shame, and sat down at the right hand of the throne of God."  The application?  Here are some of my joys as a result of the last 24 hours:

  • Jerry was supposed to stay home with grandma, but Lynn's daughter Jess called and asked if he could come with.  She loves Jerry and he just adores her and he only sees her now when she's on breaks from college.  This is her spring break.  Therefore, Jerry was with us when his seizure happened. 
  • Momma D and several other powerful prayer partners were there to pray for Jerry while we waited for the ambulance.
  • The entire event and how it was handled was all a great testimony to Tastefully Simple representative, P.J.
  • Pastor Billy came to the hospital and stayed there until 11 p.m., keeping John company and encouraging us with his presence.
  • My friends Kim and Suzanne came to the hospital for a check-in.  Kim actually stayed for quite a while and even got Jerry excited about some of the upcoming procedures....She can make a colonoscopy sound fun and exciting!
  • Kim left me her fully-loaded iPod to help pass the hours until our room was ready.
  • A homeschool mom and friend, Christine, who works in the pediatric NICU and was at work last night and so came down to show her support and give much-needed hugs of encouragement.
  • The EEG was done immediately at the hospital and we didn't have to hassle with an outpatient test and finding babysitters next week.
  • Dr. Rao, Jerry's psychiatrist and medication manager, will be closing his private practice on April 1st.  Jerry's pediatrician did not feel comfortable filling this role for us.  Dr. Rodgers, the friendliest and best bedside-mannered neurologist at the hospital (who diagnosed Jerry), told us to look no further because she would be glad to have Jerry as a patient....and she's ten minutes from our house....and she has lots of toys in her office (evoked a smile from Jerry).  She is also on the conservative side when it comes to medicine.
  • My sister Wendy was there to give us a ride home after being discharged...and take us to the video store for a movie...and to pick-up Chinese take-out, Jerry's request for dinner.
  • Jerry's Medicaid will cover the ENTIRE cost of the hospital stay, tests, room, doctors, etc...  We have never taken advantage of it before as John's insurance at work covers the kids.
  • Though he doesn't remember much of it, Jerry got the ultimate first-class ride in an ambulance.
  • My phone rang off the hook with concerned family and friends offering their prayers and support.  Susan at church even kept everyone updated with Jerry's progress via e-mail.
  • Prone to motion sickness, while sitting sideways and riding backwards in the back of the ambulance, I did manage to overcome the urge to be sick once we got to the hospital!
  • All of the hospital staff were friendly, compassionate, and very accommodating.

Need I say more?!  Yes, I am tired.  Yes,  I desperately need a shower, as I have been wearing the same clothes for 36 hours now.  Yes, Jerry has yet another diagnosis to add to his ever-growing list of challenges.  Still, I have the joy of the Lord and am ever so thankful for His faithfulness in the midst of this storm.  Thanks to everyone for their prayers and encouragement.  We love you all.

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Comments

Feb. 28, 2009 - Awesome post!

Posted by mattzach4
Tara ~
What a wonderful post and amazing testimony of God's love and power.
But both Bob and I said - poor Jerry! The kid has more than enough on his plate! Of course he has an awesome Mom and Dad to help him.
:-)
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Feb. 28, 2009 - God is Awesome

Posted by Anonymous
Thank you for pointing our eyes to the Lord! He is an amazing God in all circumstances!
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Mar. 1, 2009 - Untitled Comment

Posted by Anonymous
Praising God for many reasons . . . immediate answers, warm and caring people, Jeremiah's safety, your sanity (LOL), full insurance coverage!!!!!!

Tammy
http://aut2bhomeincarolina.blogspot.com
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Mar. 1, 2009 - Untitled Comment

Posted by Anonymous
Tara,
God NEVER ceases to amaze me as I see Him work through John, you and your family. You are such an inspiration to me in my Christian walk as you live out your "joyful journey".

Much love to you all and I will continue to keep you in my prayers.

Hugs,
Miriam
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May. 23, 2009 - Untitled Comment

Posted by Anonymous
I stumbled on your blog through curriclick. I am so thankful you were with your son so you knew what was happening. And what a relief to have a quick dx
May the Lord bless and sustain you, step by step
Monique
mom to 10
a few w/ challenges
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About Me

I am a home schooling mommy of four children 12 and under and happily married to my best friend for the last sixteen years. Our youngest son Jeremiah was diagnosed with Asperger's Syndrome in 2006. This blog has been created to document the home schooling challenges and rewards of teaching Jeremiah.

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