A Josiah Update - Late Sunday April 26th

Hello Everyone

We have no nurse tonight so I'm taking the opportunity to fill in a blog post. I can't believe it's been over a month - my goodness, my biggest apologies! OK, too be honest it's really hard to remember all the newsworthy bits of the last five weeks, but I'll do what I can.

Probably the easiest for me to start with most recent news. Josiah had a quick trip to Emergency this morning because he had 6-7 absentee seizures in a 3-hour period. Needless to say, we let him skip church ;) Thankfully he has no respiratory issues, just an ear infection unless the bloodwork shows something else. He was home by lunch and has had a great rest of the day.

On a seizure note, we're extremely excited to see Josiah's Dilantin medicine being successfully weaned (his Lamotrogine medicine is being increased simultaneously). In a just a few more weeks he'll be completely off Dilatin and hopefully that will ease his teething pains (Dilantin toughens the gums).

Josiah has been going for very long stints without the ventilator. There have even been a couple of days where he really only had his ventilator for naps and sleeps. Very awesome! I can't tell you how great it is to move him around 'wireless' ... not too mention it eliminates a bunch of white noise in the house!

Josiah was able to have his sight and hearing examined this past month. Josiah may need hearing aids in the future, but the good thing is that at the moment it is only fluid which is his obstructing his hearing. We also found out he is near-sighted, and will probably need glasses down the road. His eyes also have the tendancy to 'shift' and he does have one eye that can be a little lazy, but the muscles appear to be well which is a good sign.

After having Josiah's trial walker for a week, we determined that his pelvis probably isn't ready yet to support the weight of his upper body (the walker had a bicycle seat between his legs that he would rest on). So we'll be seeing if a differet kind of walker will work for him. Thankfully, his ingrown toe nails (yeah, both of his extra big toes were ingrown - the ankle brace straps that went across his toes caused the nail to dig in!) have improved so we might be able to return to using his braces.


Here are some specific things that we have been praying about:
~ That Josiah will be able to walk (crawl, roll over, etc)
~ That Josiah will be able to learn how to communicate with his mouth, hands, and eyes and that we'll be able to understand it
~ That Josiah will stop having ear infections


.... and, one little last thing - a treat for sticking around to the end of this lengthy post!

Josiah went to the zoo last Thursday and he got to meet a local sports hero who was taking a holiday with his kids. The only thing is, you have to guess who (which!) he had his picture taken with!!



OK, you have a 50-50 chance: Josiah got to be held by Daniel Sedin! It was completely coincidental that he was wearing his Canucks toque and shirt!


Thanks for all your prayers, cheers, and support.
- Andrew, Marie & Josiah