Thursday Evening - A Josiah Update

Hello Everyone!

Thanks for understanding how it's just easier for me to post updates here and there as I can. It's funny, from day to day there doesn't seem to be much to pass along, but as soon as I start jotting down ideas I realize I'm committed to another lengthy update.

So where to begin? Josiah continues to excel at home. It's difficult trying to provide him structure and schedule because from day to day some many different things may change. We aim to give him routine, but with all his meds, the cycle of friends and nurses, and the fluctuation of temperature, it's pretty difficult to provide him a normal despite our best efforts. We're hoping that as soon as his meds are balanced out (weeks?) things may improve.

That said, Josiah only took one nap yesterday (30 minutes at that!) and did great - a big first! Speaking of big, Josiah has climbed up to 27 pounds, putting on 2.5 pounds since coming from the hospital. His head circumference has maintained as well - Praise God! - and we're so excited that his 'body is catching up to his head'! :D

We're still working on getting his seizure meds to the right level and getting rid of one completely. We're hoping that we'll be able to start weaning off his unneeded seizure med by next week. As far as seizures go, Josiah has certainly had less (2 in 2+ weeks?) and they - in our words - are the best seizures he's had since coming home (small, spaced apart, and don't leave him in a clammy sweat afterwards).

We continue to meet with our support team at BC Children's every two weeks (mostly in part to follow up with his seizures, respiratory, and water-management issues). It's reassuring (it a way I suppose) that the doctors and nurses are just as baffled about what to do about Josiah's water retention as we are, so we do the best to manage with strict fluid intact and basic intervention if we feel he's dehydrated.

It appears that Josiah may have seasonal allergies. For the last few weeks his cough has been more of a wheeze (making it difficult to fully clear his airway) and sometimes he breathes a little harder. We have a 'puffer' on hand that helps out a lot on those days. It could also be a dust issue (hospitals tend to be less dusty!) and we're looking at buying a fancy-shmancy vacuum cleaner to make our dust-free (or as close as can be, right Ryan?!)

It could also be that Josiah's trachea is getting wider, a strong possibility since he's getting more and more 'words' out every week (more like strong whispers of air or the odd "AH!" when he has hiccups!!) If his trachea is wider, than more air is likely to pass the trach and out the mouth giving a 'wheeze sound' during a cough. One of the things Josiah has really enjoyed of late is 'singing' when someone is playing the piano (he'll straighten right up, eyes wide, and start making noises - so cute!). I also had him try playing my djembe yesterday and he was very interested.

Further, in the development area of Josiah's life, Josiah is enjoying sucking on solids (pickles, peppers, celery, and carrots) and had a little bit of pablum yesterday. We're proceeding slowly and with caution to see if we can add solids to his diet on a regular basis - how exciting! A few weeks back he also had some orange and lemon sherbert and he makes THE BEST faces as he's trying out these new foods! He's also tried a few new drinks recently: orange juice, apple juice, but his most favourite - and I'm not even kidding you - is coffee. Atta boy!!

Lastly, we are orientating our third and fourth home-care nurses. Woohoo! We feel pretty privilged that these individuals are making time to take care of Josiah. Further, three of the nurses are Christians and so we feel double-blessed to have them in our homes with our family.

In a few weeks Josiah's story will be added to the Miracle Kids section of the BC Children's website. I'll let you know when that goes up. And Josiah's story will also be hitting mailboxes again in the fall going out to people throughout BC who have donated to BC Children's Hospital. If we get a copy maybe I can scan it and post it here.

Thanks for your faithfulness to us in your prayers, thoughts, and warm hospitality. It's good to have you behind us.
- Andrew, Marie & Josiah