Saturday Afternoon - A Josiah Update

Hello Josiah Followers!

Almost a month without a post! New record! If you think that is bad, my other blog is in even a further state of neglect.

The summer has been busy. Not having legitimate internet access at home ('borrowing' the free airwaves from time to time!) has contributed I guess to the fewer updates, but all in all it's just our family getting into the routine of life. It's a good sign I suppose that we're not writing about Josiah as much as we used to, because it reflects the reality of being home and facing fewer crises. With a steady flow of nurses, support staff, friends, and family going through our home all summer (this week I think we hit the record with 11 people in our home at one time!), grappling with unusual sleeping patterns (and snagging naps when we have the time!), getting used to all the 'work' that surrounds the basics of Josiah's day, it's been a very full and rewarding summer.

So what can I say about my son? He's growing, over 32 inches long and almost 30 pounds. He's becoming a 'wiggle worm', finding ways to move which is making even the simple tasks more interesting now. We're scolding him more during trach ties because he refuses to stay still and he's doing his best avoid having his nose wiped. He outgrew his 'high chair' but that was adjusted this week to his size. That piece of equipment is the absolute best this for him: it allows him to interact with people in an upright position, playing with toys and even doing Wii bowling with some assistance!

An additional piece of equipment that we started using a few weeks ago is a form pillow that inflates and supports his back while he sleeps because he has developed a poor sleeping position which is straining his neck and back muscles. He's gotten used to it (it's kind of like cuddling up to a blanket-covered brick) and will sleep in it for up to 6 hours at a time.

Josiah is handling his phenobarbital (seizure med) decrease very well. In a few weeks he will be weaned off it completely! Yay! So far we haven't run into any problems with bringing lamotrigine on board (another seizure med) though we sense it's causing him to have a constant runny nose and be more prone to vomiting.

It's great watching Josiah learn, whether he is reaching for food, his Wiimote, or responding to being tickled. He's so close to rolling over, but is much better at moving from side to side. He still is dabbling with solids and is working on biting through fruits and veggies. He kicks like never before: we roll Marie's ab ball up to him when he's in his chair and he boots it around!

Health-wise, Josiah has had a few challenges over the last few weeks. He had a outter ear infection which spread to his neck, and that turned out to be MRSA. That was treated with cream and ear drops (and Marie used some diluted oil of oregano in there as well), but an inner ear infection returned about a week later and that has been causing him a lot of discomfort. We went to a wedding last Saturday and the heat caused a nasty contact/heat rash to form on his neck which got a little infected. We treated that with creams again and his neck is great again.

On top of the ear infection (which he is still taking drops for and oral medication), he's got two cysts in his mouth where some teeth are trying to come up, bulgy blue blisters that hurt and so he's on Tylenol here and there to help him cope with that pain. Marie had to walk Josiah to emergency yesterday because he would not stop crying. He actually had to be sedated for the first time since being home because he couldn't stop crying and Marie wanted to prevent him from having a dying spell. She sensed that his lunger were wetter than normal, and so she went to the hospital for a quick check up. His bloodwork showed that he is fighting something, so he's antibiotics have been extended for a few more days. Thankfully, he had a great night and a great day without any pain or fuss. What a trooper.

Next week Marie and Josiah are back at BC Children's for his regular follow-up with the Ventilator doctors and Neurology. They are also are going to stop in at the dental clinic because one of Josiah's seizure meds can cause gum inflammation and with his teeth trouble they want to make sure nothing is missed.

On the nursing side of life, July into August was hard because we had no night nurses for 2 weeks. We have 3 nurses in total, and on average for September it looks like we'll have 4 nights and 3 days covered in a week, for which we are grateful. We had a stint here in August of 8 nights straight of coverage - Marie and I almost felt normal!

Some other firsts: Josiah had his first dip in a pool a few weeks ago at my Aunt and Uncle's place (Marie is teaching some private swimming lessons there), he attended his first wedding, has gone down a slide and went on a swing at Mill Lake, and gets ridiculously excited for Wii bowling (best score for the moment is 164).

I'm sure there's little bits that I have forgotten, but that will hold you over for now! Hopefully I won't keep everyone waiting so long next time. I'll also look on our camera to see if there are any recent pictures to upload.

Til next time, thanks for the love.
In God's Grace & Peace.
-Andrew, Marie & Josiah