An Update From Grandma Sue

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Bryce got home from the hospital last night about 8 pm.  I’m staying with Jenna and Kyle and taking the night shift so his exhausted parents can rest.  Today, Bryce had a nice hot bath, is eating well, and getting a ton of snuggling in with Mommy, Daddy, and Grandma Sue.  He also just had a visit from Grandpa Tom and Uncle Josh.  I think just being home is a good dose of medicine for our little guy as he seems much more relaxed.  He just had a nice long nap in is “prayer” blanket which was crocheted by a wonderful group of women from Cassville who meet weekly and do handiwork while they pray.  Mommy and Daddy also snuggled in a beautiful quilt that was sent to them from a very caring group of quilters from the Bloomington area.  My niece, Dr. Steffanie Nemitz, paid Bryce a home visit today, and her truly gentle and caring touch seems to leave Bryce calm and relaxed.  Her caring and support has been so wonderful over the past couple of weeks and we are forever indebted!  God Bless all our family, friends, and the caring community of people who are supporting and praying for Bryce during this ordeal.  Please continue to pray that the test results, which will be received during the next few weeks continue to be negative.

Again thank you all for the love and support!
Sue

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Still No Answers

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What a trooper Bryce is: He’s proving himself to be such a strong little guy in the face of a lot of adversity …

Kyle went with Bryce for the lumbar puncture, which went just fine. He was quite groggy afterward, but once he finally woke up, was ready for a big bottle; he hadn’t eaten since around 11 am in preparation for the procedure. He was greeted in his room by Mommy and Daddy, Grandpa Bart and Grandma Wendy, Papa Tom and Grandma Sue, and Uncles Jake and Josh.

Around 8pm, the neurologist came in with initial information from the spinal tap: They don’t believe he has an autoimmune condition, though they are doing more specific testing around this today. They are also running genetic tests, results of which won’t be available for anywhere from two weeks to a month. We’ll continue to PRAY, PRAY, PRAY that as these tests roll in, they come back negative.

So far today, Bryce has been seen by an ENT (ear, nose and throat) doctor, an occupational therapist, and a steady stream of nurses and residents. After three days in the hospital, he knows, unfortunately, that when the door opens to his room, he’s probably going to get poked and prodded in some way: His heart rate jumps significantly each time someone other than Mom or Dad approaches him. They’re comforting him by reading books — he loves his new sound book from the hospital gift shop — and just holding him as much as they can.

At this point, we’re not sure how much longer they’ll be in the hospital. It will likely depend on what they learn from some of the more immediate tests they’re running. We do know that whenever they get home, Bryce will be working regularly with a physical therapist, and probably an occupational therapist, too, to rebuild his strength.

I forgot to mention yesterday that Bryce also had an eye exam, and his vision is great. No concerns there!

More updates to come as we learn more. Thanks so much to all of you out there who are keeping Bryce, Jenna, Kyle, and family in your thoughts and prayers. They are grateful to each and every one of you.

Happening Now …

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As I write this, the doctors are prepping Bryce for the lumbar puncture so they can draw spinal fluid. The procedure will take about a half hour and Bryce will be sedated. Thankfully, the doctors have conferred about what they need to get from this draw so they only have to do it once — we really don’t want him to have to go this through multiple times. Please join me and hundreds of others in praying that these tests turn up answers.

A Mantra (Blessing, Prayer — whatever you want to call it) for Bryce:

The Light of Love Surrounds You.
The Energy of Love Enfolds You.
The Power of Love Protects You.
The Presence of Love Is Within You.

—Auntie Jamie

Tests, Tests and More Tests

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Since his admission at the Children’s Hospital yesterday, Bryce has been seen by many doctors, had multiple physical examinations, had another EEG, and been the ringer with blood draws. Poor little man is worn out. All of the blood tests that have come back so far are normal, but there are several that can take anywhere from a week to a month to get results. They should be hearing about the EEG results tonight. A few of Bryce’s doctors — including a pediatric neurologist and a geneticist — got together today to figure out a game plan. Tomorrow they’ll be doing a lumbar puncture to draw spinal fluid to see if that can tell them anything (he will be sedated for this, thank goodness). If the initial results from that don’t show anything, the sample will then be sent on for a more detailed genetic review. Many things have been tossed out there as possibilities, from epilepsy to allergies to infant botulism to spinal meningitis to metabolic disorders to autoimmune disorders. As the test results come in, the doctors should be able to begin eliminating possibilities and then be able to focus in on what’s at the root of Bryce’s health issues. I wish we knew more, but as of right now, he’s still a bit of a “mystery” as they’ve said. Please continue to keep Bryce, Jenna and Kyle in your thoughts and prayers. -Auntie Jamie