Update 7/11/14

Good morning all! As I've said many times the past couple of weeks, I'm sorry for my very slow and less detailed post. Life has been beyond crazy and stressful. I'll explain more on that later in a future post.

Harlan has been doing a little better everyday for the most part aside from the daily almost constant tantrums. I'm sure I'd be having tantrums if I couldn't do things that I know I use to be able to do only a few short months ago.

Harlan has not gotten sick since Monday and is showing more and more enthusiasm in getting out of the house although he still has mild meltdowns in the car.

Since coming out of the hospital in April, Harlan has been suffering from some mild jerking in the evenings. We didn't think much of it until it started to worsen after starting physical therapy. The last 2 weeks have been the worse. So bad that it keeps him (and me) awake and unable to rest well- during nap and bedtime. After doing some research on my own and discussing my findings with Harlan's oncologist, it's been determined that Harlan is suffering from myoclonic jerks/seizures. We do not believe anti-seizure medication is necessary, but we have increased Harlan's nuerotin at bedtime. Harlan's doctor believes this is a response from Harlan's brain saying "I'm trying to heal."

2 weeks ago it was also determined that Harlan needed some leg stability help in the form of AFO's/leg braces. Earlier this week the gentleman who will make these braces paid Harlan a visit here at the house. He confirmed that yes, Harlan does in fact need braces. So, today is the day; we go at 11am to have molds made and in 2-3 weeks Harlan's braces will be available.

For the most part our lives feel like the movie Groundhog Day. Everyday it's the same thing with minimal improvement on Harlan's part. All the addition of equipment (walker, braces, special shoes) and therapy have definitely added to the overwhelming feelings we are having. Trying to stay positive and upbeat is now a job in itself.

As always thank you for your support and following Harlan. This journey is far from over and I feel like many days the ride is just beginning. - Jacki

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1 Reply

stephanie mattox
Yall are as always in our thoughts and our prayers. Please dont hesitate to call if yall need anything. I know it is a very stressful time on yall but stay positive and focused on the day when Harlan will soon be all better and yall will be running all around playing. Love yall Adam, Stephanie, & Austin