Monday Oct 20 - A Josiah Update

No news for so long! It feels like I just wrote up an update but obviously its been weeks. A lot of has happened during that time so I'll do the best I can to be brief yet thorough!

Josiah has been completely weaned off two of his seizure medications, Tegretol and Phenobarbital - yay and praise God! Through the weaning process he certainly had his off days due to withdrawl (seizures, irritability, etc) but he's been so excellent in the last week - I don't think he's a had a seizure at all. Being off Phenobarb and Tegretol has been so great because they acted as inhibitors and now he's much more interactive and alert. He's still on three seizures meds, but we're moving towards getting rid of another one (Dilatin) which would be FANTASTIC becaue it is triggering painful cysts where his molars are trying to grow in - 2 big blisters that have lasted for months!

Josiah has also been receiving a lot more physio. We felt that once-a-month appointments were holding Josiah back so we have moved to once-a-week. He's loving it! He's learning to lean over an ab ball (with support) and he's pushing himself up and standing! We can brace him in a standing position and he's trying to walk which is so AMAZING to see. He's also bracing himself much better and is learning to use his arms/elbows to balance when in a supported sitting position. The biggest news is that he's going to be fitted for feet/leg braces early in the new year and will be given a trike walker to get him walking - Woohoo!

Last Saturday Josiah had an aspiration (a cough that failed to clear properly and so some meds/fluids ending up in his lungs). We were able to act quickly with chest physio, instills, suctions (plus a lot of his fierce crying!) to clear the goobers from his lungs. Within an hour his lungs were better, but we still went to the Abbotsford hospital (ARH) for a confirmation x-ray which showed that his lungs were great. Praise God!

Thanksgiving was great. Josiah got to see both sides of my family in the same day and he was spoiled with attention. Get this: he woke up at 5 AM that morning and went to be around 10:30 PM, sleeping a total of 40 MINUTES the entire day! Boy he was wired, he likes people too much. The highlight was having his great-grandpa Martens hold him for the first time (Marie nicely FORCED Josiah into his arms and Josiah loved it!)

This past Saturday Josiah returned to ARH and spent 30 hours there with a chest infection (pneumonia basically). Thankfully he never entered a critical stage, but it could have easily gone that way if it wasn't for quick assessment and prayer. Saturday morning Josiah's heartrate was 200+ at rest (at 70 beats higher than normal), but thankfully his sats was strong and he didn't need oxygen. We took an ambulance ride to ARH (my first!) where he ended up being admitted.

It was a HUGE BLESSING to be able to stay at ARH and not be transported to BCCH. The staff were great and very accomodating, and the ped unit was really nice. They are working at being prepared to take trached and vented children, but it's going to be a slow learning curve. Our stay was hinged on the condition that either Marie or I or one of Josiah's respite givers was at his bedside all the time, which we were very excited to do. Thankfully they were all wonderfully curious and interested in observing and learning from Josiah. A few even dropped by to watch Josiah's trache change! We're hoping that we can continue to develop a relationship with the staff there, using Josiah as a bit of a training opportunity for them and so we'll see what the future holds.

Josiah was treated with a pretty aggressive antibiotic and within hours he was already looking and feeling better. He had one dose via IV, but he lost two IV lines (pudgy hands and rolls get in the way!) so he took two doses of antibiotics via inter-muscular (two shots to the legs). Painful, but it's all done in 12 seconds. It was a blessing to be treated via IM and not IV because it allowed him to discharged a day early! He was pretty excited to leave the hospital room (hard mattress) and get back to something familiar and comfortable. He continues to clear his lungs well and he'll be on antibiotics for the rest of the week. Thanks for your prayers!

We're looking (hoping and praying) that we can wean down some of Josiah's dependancy on diuretics. 4 diuretics are a lot and it can do a lot of harm to his body long-term. Our next scheduled clinic at BCCH will cover some of that and hopefully his body will respond favourably. We'll have to wait and see.

So all things considered, Josiah is loving life. He continues to go on a lot of walks out to Mill Lake, goes on the swings and slides, enjoys meeting other kids and loves dogs. Dogs seem to really like him and they've always been really gentle around him which is so special to see. He even a little dog sit in his lap for 20 minutes last week, to the point the dog was so comfortable it was trying to fall asleep ;)

That pretty much covers what has been going on in the last few weeks. Below I've listed a few prayer requests so that you know how to pray for us in the weeks to come.

On-Going Prayer Requests
~ Basic health, especially during cold and flu season
~ That his teeth will come in without pain and that the interferance of his med would subside
~ That he will manage the proposed seizure med weaning well
~ That Josiah's diuretics can be weaned down without dire affects
~ That his muscle tone, strength, and spine will continue to improve to allow him more mobility and the ability to sit, crawl, stand, and walk!

Thanks for your faithfulness, encouragement and love!
Grace & Peace
- Andrew, Marie & Josiah