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