A Josiah Update - Friday Afternoon

Hi Everyone!

I have Miracle Weekend times for this Saturday (May 31st) and Sunday (June 1st).

#1 - Our interview with Elaine Yong will air Saturday evening @ 10:39 PM.

#2 - Our "thank-you blurb" will air Saturday evening @ 9:54 PM and Sunday afternoon @ 1:13 PM.

... if anyone wants to record it on our behalf that would be great (still haven't purchased 'rabbit ear's or ordered cable!)

Thanks for all your enthusiasm!
- Andrew, Marie & Josiah

Josiah Update - Pictures

Josiah's Bedroom ... the awesome Canuck colours!
(I love my wife!)

Josiah's Bed ... other side has a bookshelf along the top and drawers along the bottom

Josiah's Bed ... with the plexiglass in place all we need is an 'ice rink' bed sheet and Josiah's bed comes an arena!

May 6th ... Josiah leaves the hospital and says 'Good-bye'
to Grandma at the airport

May 7th ... Kelly, Cindy, Patty, Trina & Timmy come over ...

May 7th ... Mommy is shocked by Josiah's mohawk
(compliments of Kelly)

May 8th ... tired but jubilant!

Grace & Peace.
- Andrew, Marie & Josiah

Thursday Afternoon - A Josiah Update

... 'bout time eh?!

Finding the time to update these days is getting harder and harder! Life is just full: busy, joyful, long, exhausting, exciting ... full! We barely have enough time for sleeping and eating, let alone catching up on email or reading a book. Here's some tidbits of news and events from the past couple of weeks.

Josiah continues to do well, but is probably in the middle of a cold right now (something similar to what he had 2 weeks before he was discharged from the hospital). Noticeably he has to work harder to breathe sometimes through the day, but we got an inhaler to help him out. Thankfully - Praise God! - he hasn't needed any oxygen or increased ventilator support through this, a big big blessing and a sign that he's growing up.

Josiah has also had a few seizures now since coming home, but we're managing them just fine. The potential causes of the seizures are plenty, but it's who he is and we're slowly working towards getting the right seizure med levels in his body. You can continue to pray that he brain will develop and with the help of these meds that he'll be able to move past these seizures.

We've got nurses! YAY! We have two amazing nurses that come in each week for 3-4 shifts. That means Marie and I get two nights of sleep and some help during the day - woohoo! And it looks like we'll have a third nurse joining us mid-June so that means we should get sleep every Monday to Friday - WOW! ... and to clarify I suppose: Marie and I can sleep when we are watching/taking care of Josiah through the night. It's just on the recliner in his room and not with each other!

This past Saturday we drove out to Aquadel Golf Course (near Cultus Lake) to be pre-taped for the telethon that is going on Global this coming week. We've been told our 2-minute interview will be on Saturday (May 31), but we don't have a time yet. If I'm told the exact time before Saturday I'll post it, but otherwise you can just take your chance and try to catch us on TV. If someone wants to record it for us that would be sweet! (we don't have TV).

So far we have three incredible friendswho have completed their trache care and ventilator training through BC Children's - and more who are planning for it - so that they are now able to provide respite care for Josiah. We are so blessed! Marie and I really enjoy having them around, hanging out with them but also handing over our son for a while to catch a break!

We were completely surprised to have a brand new air conditioner donated to us this week. The new place cooks in the summer heat and we noticed the difference AC made within minutes. Also, Josiah visited someone's house for the very first time this week - my aunt and uncle's out in Mt. Lehman. Such a fun memory maker!

We're praying and hoping that we can get to know some of the people in the condo soon. Though we've had a steady stream of visitors coming in, we still miss Arnold and the whole community-feel. We've already met some nice folks and hope that we can establish some friendships along the way!

That's really all the news of the past couple of weeks. I know it feels like forever since I've logged on here to write something, but we're settling into a (CRAZEEEEE!) routine of life, taking care of Josiah, working, playing, visiting, bringing in nurses and repeat. And man, we make a lot of garbage: I never realized how Josiah's used supplies just add up!

Thanks for all your faithful prayers and thoughts.
- Andrew, Marie & Josiah

Tuesday Afternoon - A Josiah Update

Finally! Something is posted!

OK, you can all imagine how much stuff I could write here to bring you all up to speed on how we've been doing and enjoying having Josiah home with us ... 15 months in the making! I'm not sure how long this entry is going to ramble on or what shape it will take, but bear with me as I shed some light on the month so far.

May 1st - we moved into our new condo with the help of so many friends from our church and family as well. Bless you all! We had a team of ladies cleaning up our new place and assisting Marie in getting the kitchen and bedroom together. We also had a group of guys who also had all our furniture moved over and in place within a few hours. This was in addition to the people who had helped us pack in the weeks leading up to our moving day, and the people who came in to clean our former home. Fantastic! It was such a fun day, made even better by the fact Marie's mom and sister drove out to be with us for a few days.

May 2nd - Marie, her mom (Nola), and sister (Emily) start painting Josiah's room and adjacent bathroom: Canucks blue, green and white! He's got the best looking room around! The painting is all completed by Monday, and the ladies also were able to get to spend some quality time with Josiah in the hospital.

May 5th - The hospital hosted a discharge party for Josiah so all the nurses and staff who have gotten to know Josiah along the way and cared for him were able to swing by and say their good-byes. Lots of cake, pictures and cuddles for our little man (OK, he just had some icing and no cake!). We also carted the last of his stuff out of the hospital room and our van was FULL!

May 6th - Josiah came home!! The day ended up being longer than we expected just because we had so many house and hospital errands to run, but we got everything into the van and apparently we appeared to be very organized (it was the second time in a week we had moved!)

Things were tricky because Josiah has SO MUCH STUFF and needs. Some of his supplies were ordered late or overlooked and we have been scrambling a little grabbing supplies from hospital to hold us over, but everything has come together really well. I think Purolator has come by our house already 6 times.

It was pretty surreal have Josiah in the house with us that first night. At the same time, it felt so natural and it 'fit'. Things went very smooth and Josiah has been absolutely stellar through it all. He's probably handled the transition better than his parents!

We are tired, but it an exhaustion based more on lack of sleep than anxiety and stress (which we have been living through for the last year). We give each other lots of grace since we've definitely had our grumpy moments this month! It feels more like being newborn parents and we've been loving it. Josiah always needs someone with him, but because he has two alarm systems (one on his ventilator and another on his oximeter) we can doze off in his room and know that we'll wake up if there are any problems. We also have a super-handy video monitor that we can take with us if we need to step out of his room for a moment.

Josiah's room is sweet (and we'll post some pictures here soon). The bed that was custom-made for him is amazing and we got a comfy recliner to doze off in throughout the night. Marie and I usually take shifts of 10PM-3AM, 3AM-10AM which has been going pretty well for us. The first week was full because our typical downtime through the day was spend on re-arranging furniture, emptying boxes, re-organizing - the typical moving in stuff that can drag on for months. But that is settling down now and it's easier for us to grab naps throughout the day as needed.

Like I mentioned before, Josiah has been doing great. We had his first clinic (hospital follow-up) yesterday and were able to have some of our questions answered and Josiah was looked over briefly. I honestly believe that clinic is more about checking up on the parents to make sure that they are doing fine and aren't too sleep-deprived than it is about the actual patient! Josiah had his first seizure in quite a while last night, but Marie was able to handle it and he eventually came out of it and was able to get a good night's sleep. Yesterday's events really broke up his routine and he had no nap at all, and that exhaustion led to his seizure. Other than than, no problems!

We have an amazing team of people at the hospital who will be following us and checking in every couple of weeks. We also have an equally amazing team of people who are taking care of Josiah on the home end of things, helping us order supplies, organizing nursing hours, and evaluating Josiah's needs and development. Further our church and family have been bringing over meals to help us get through this transition period. We are so blessed!

It appears that next week we'll finally have a few nights with nursing support. Because Josiah is on a ventilator, the nurses have to receive special training which takes place this week. We're excited to get to know these people who will be caring for our son! At the same time, it's going to be a great big learning curve figuring out what our life and home looks like with a nurse in Josiah's room for 8 hours a day (but that's usually going to be at night).

And Josiah continues to surprise us and show us new things. He did his first 'kissy face' on Mother's Day, but unfortunately he gave it dad and not mom! He also performed his 'toy transfer', grabbing his toy with his right hand and passing it to his left - awesome! He's definitely trying to so hard to roll over, and actually has been preferring to fall asleep on his stomach (a position we still have to help him get to).

He's also been loving the fact that he has his parents with him 24/7. The first few days he woke up in the middle of the night (probably because it was new environment and quieter) and he was so happy to see a parent there in the room with him that he refused to go back to sleep! I was able to take a week of holidays to help get adjusted, and today I'm back at work.

I'm sure there can be much more to say, but that's probably enough to go on for now. Thanks for all the prayers, love, thoughts, cheers, and support you've given us through this chapter of our life. You're welcome to continue following our journey as we are finally together as a family at home and discover our new norm. May God bless you all for your kindness!

In Joy!
- Andrew, Marie & Josiah

Late Monday Night - A Josiah Update

One last note before I enter the week of internet silence (or whenever I call Shaw to connect us!) ...

So here we go! We are HOURS away from taking Josiah home and the only emotion I have is the "it's-about-time" emotion (if that makes any sense). We're ready. Tired. But ready.

Josiah's discharge party today was special. It was a nice gesture to have so many nurses and staff come by to share their wishes and to see us off. We tried to avoid tears altogether - I think Marie and I were too exhausted to be emotional and reflective - but it's hard knowing that these people we've seen almost every week are not going to be a part of our lives in the same way. We're going to miss them big time: they have played an enormous and foundational role in the last 15 months and they have changed our lives. God bless them.

For a while it seemed that Josiah was fighting a bug during the day - the common curse that falls up many longterm ICU patients as they are just about to be discharged! But his secretions cleared up throughout the day, he didn't need oxygen by the time evening came, and he definitely seemed more playful and alert after his post-party snooze. So pray that he isn't coming down with something because it would certainly make the first week home eventful in all the wrong ways!

We packed up most of his belongings from the hospital today. His bed came into today as well - WOW! We'll post pictures some time.

Thanks for all your continued prayers through this week - I know a lot of you will be praying for us some more as we transition home and re-discover again a whole new 'normal'. We found out today that we are even shorter than expected on nursing support, so we are praying that the program will be able to fast-track some LPN's so they can take the course this month and not be forced to wait until June.

And a final notes about home visits and stuff: I know many people will be interested in dropping by to see us and lend a hand as desired. We thank you in advance for your generosity! Please know that if you are thinking about dropping by you must give a call first, better even a day in advance. We have a handful of appointments over the next two weeks, but more importantly we are trying to avoid unannounced visitors in case we are out or sleeping (our sleeping schedule is going to be pretty funky over the next couple of weeks!) We're doing a big adjustment here going from public living to private, from '24/7 nursing-babysitting' to 'do-it-yourself-care' and we know that you kind folks will be thoughtful and understanding. Thanks so much!

In JOY and EXCITEMENT and CELEBRATION!
- Andrew, Marie & Josiah

Saturday Afternoon - A Josiah Update

Greetings to All

This blog is certainly due for an update, though I get the sense it will be more of an update on us that Josiah specifically.

Josiah continues to do well. After having the cold a week (2 weeks? ... my mind is fuzzy with details...) ago he had a brief bout of 'trachitis', an upper airway infection which he got over in a couple of days without antibiotics. He's been back on the bottle over the last few days and still enjoys it!

Marie's mom and sister have come out to visit and help us with the move into our condo. The move on Thursday went super-smooth due to all the support we got from family and friends within our church! Just a huge blessing to have so many people lend their time and energy to us in that way.

Marie and her family are working on painting Josiah's room today (as my aunt said earlier, pink is just not a boy's colour!) It's going to take us a while to get used to the city traffic and 'condo noise' but it's starting to feel more like home and less like a hotel (this is coming from a guy who's lived in the country all his life).

Josiah is still scheduled for discharge on Tuesday, with a going away party on Monday in the hospital. We've gone over the house assessment with our community nurse coordinator and everything is good-to-go, but Marie and I will probably be without nursing support for 2+ weeks because no one is trained yet. So pray for our safety and sanity! Thankfully, a support team is coming together really well so within a month hopefully we'll be well taken care of. A big blessing: we've been approved for 48 hours/week of Community Life/respite care funding, meaning we have money to pay qualified 'babysitters' - Woohoo!

Thanks for all the prayers and the love. I'm not entirely sure when we'll have internet hooked up in our house, so next week (since I'm off work) may be lean on blog entries - my apologies in advance!
- Andrew, Marie & Josiah