Merry Christmas, Love

I'm sure everyone knows by now. JW passed away on December 10th. He had gotten sick a week before and was not getting any better. He had pneumonia but was not strong enough to overcome it. I'm thankful for every day of his beautiful life. He showed me so much in 3 years, I learned to be patient, giving and much more. He not only touched my life but countless lives. I always knew he was not my child but God's. I know he is not suffering in this cruel world anymore. He's sitting in the lap of his Nana Sylvia as she rocks him and sings quietly in his ear.
I knew this day was coming but no one can be fully prepared for the reality of that day. I love you so much my Love. I'll be waiting to see you again. Merry Christmas!

Thank you everyone for your thoughts and prayers over the last few weeks and the last 3 years. We have some large adjustments to make in the future but are accepting and understanding of God's plan and know there is a purpose.
Thank you Lord for my Angel!

Update coming soon!

A lot has happened in 2011. Things are settling down so expect an update in the very near future.

Brief stay

As previously mentioned, JW had a couple of overnighters in the hospital prior to Thanksgiving and after his August birthday celebration. My sister and the nurses have gotten really good at detecting the slightest change in JW's condition. Specifically, they know the instant he may be coming down with an illness or infection. They have learned that it is best to just take him straight to the children's hospital for observation and to get him started on medication, if needed. This was precisely the case in the last two instances where he went to the hospital. Both times, he was started on medication and was released 24-48 hours later. Once, he didn't even have to have an IV! I went with my sister on one of the days he was released. It was quite the eye-opening experience. I couldn't believe how much she has to remember to check on, ask the the nurses, and remember to pack up to take him home. This kid doesn't travel lightly. She has to unplug him from all the hospital monitors and put him on his portable ones. She has to detach the hospital's oxygen supply and hook him up to the portable oxygen tank...and then the home oxygen concentrator once they get home. Then there's his feeding tube and bag of formula. She has to remember to get all of his medications and the schedule for them that he was on at the hospital...because they somehow always change it when he gets to the hospital. Then there's any new medications they put him on to clear the infection (antibiotics). She also has to get all the regular stuff too...clothes, diapers, blankets, stroller, and so on. It is really astonishing. I was present along with mom and niece, T to assist and take pictures, of course. Here are some shots from what was an adventure for me and normal life for my sister...

JW, laughing at his sister being silly

Happy boy

So precious...thank you Lord for that smile!

Loves his sister's antics

Allie packing up

Let's go home! :)

2nd Birthday!

This post is way overdue! I have been so far behind in blogging, altogether. In the last post about James, he had been in the hospital and some big decisions were made about his long-term care. Well, praise be to God...He was willing and since then, JW has been doing so well!! I know my sister and her family are especially thankful for this reprieve from the all-too-frequent trips to the children's hospital and Air Life flights. Not only did we have his early birthday celebration in August, but we celebrated his real birthday in September and now Christmas! We are certainly hoping 2011 will be better all-around and so far things are certainly looking hopeful for that to be the case. He has had two very minor trips to the hospital since August...not by ambulance though and was out within a couple of days. Once, he didn't even have to have an IV!! Since then things have been going very well. Here are some photos from his August birthday celebration. A big thank you to all who were in attendance and for all of you who keep him covered in prayer. God has heard you and has been so incredibly faithful!

~Aunt Lindy