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

Disaster Averted!

The story of our life!!! HOSPITALS. I think after everything settles down, I will hate hospitals. I don't like them already, at least, I don't like being in them. I appreciate them and the wonderful, yet sometimes not so wonderful, doctors because they have saved my son's life over and over and over..... again.

We left the hospital again on Wednesday night, because they can't ever seem to have the paper work done by the time I arrive. I even take my time because I know they will take their sweet time and I don't really have any reason to be there early. So anyway, we got JW home on Wednesday night. He did great Thursday and Friday and then on Saturday he started having one of his choking spells, where he cannot exchange any air in or out of his lungs. He basically chokes on his secretions. So, Saturday we ended up racking up some more miles on the AirLife helicopter. This time was different.

So we have been faced with these 'difficult' decisions about which I promised I would elaborate on at a further date in time. Well, I guess, now is the time.

In talking with the doctors after JW had been in the hospital every single month since November 2009, we came to the conclusion, we had to do something different, something else other than what we were doing because it obviously was not working.

We had a couple of options: #1 put a trach (tracheotomy) in to help him have a clear-er airway to breath and possibly prevent some of the hospitalizations. #2 Do not put a trach in and walk in a slightly different way than we have been. So, we looked at all of the options, we talked with doctors, A LOT of doctors, and came to a conclusion. JW has severe scoliosis, not only is his spine curved in more than one direction, his rib cage has shifted, or rotated so pressure is being put on his left lung causing it to barely be able to function, if at all. Because of the severity of this, there is no way, surgically or otherwise to fix it. It will only get worse. He basically works hard for every breath he takes. Breathing takes a lot of calories and energy for him to do, so there is not a lot of extra energy to help him grow. We have seen a slow or almost halt in his growth due to that reason. Also with all of the horrific events we have encountered over the last 9 months, he has had more injury to his brain. With each illness that may cause lack of oxygen, his brain gets injured also. There is definitely more to the story, but that basically sums it up. We don't see a long term benefit to the trach besides being on a ventilator that breathes for him, but that is not what I feel led to do for my son. We have elected to not intubate in the event of an emergency so his life will most likely be shortened by avoiding the traumatic events that his poor weak body would otherwise incur. I have prayed and prayed over this decision and I feel this is the direction in which God is leading me. I am at peace within myself with this decision and believe it to be the right one for JW and our family. I also feel that whatever happens is God's will and is His hands. Now having discussed the hard decisions we have made, on to this emergency on Saturday. I praise the Lord and thank him so much and everyone who has been praying for JW. I sent JW on the helicopter with a paper that says "do not resuscitate" along with some other fine print. I did not know what was going to happen but the Lord was with me and him as I sent him with the EMS team. We got a phone call that he made it to the hospital and was doing ok. I was not allowed to fly with him this time. We arrived and to my surprise, he was doing great! The little guy made it through, I was amazed and thankful because normally he would have been put on a ventilator almost immediately. Now we are a few days in to this hospital stay and he is doing wonderfully, weaning down off of the oxygen to his normal regimen. Hopefully, he will be coming home soon! AMEN!! My grandmother never liked the name James, I don't think I have ever blogged on his name, but after he was born and taken to Santa Rosa's NICU in San Antonio, we were filling out his paper work for birth certificate and such and Wacy was coming up with names that I DID NOT want for sure. He finally came up with something that I was agreeable to and at that point I was in so much pain and just wanted to sleep, I didn't really care what we named him, but I am glad we named him what we did. So back to my grandmother, my Nana, she has I said before, doesn't really like his name but not much she could do about it but call him whatever she wanted. She says that we ought to call him Will, because he has such a strong will. I agree with her on the strong will part but I am kinda partial to JW now.

Last but not least: Because of the recent changes to his plan of care, I am planning a birthday celebration on August 21st. We are celebrating the wonderful gift God has given to me and our family, since we don't know what He has in store for our future, we are hosting this party a little bit earlier than his birthday which is on Sept. 16., one day after the best girlfriend in the world's birthday. We won't discuss that one, it's a BIG one.

I would love for anyone to come and celebrate with us on

August 21, 2010 at 3pm at our house in Uvalde.

I ask that you PLEASE do not come if you or your children are sick. Sorry but we are extremely germaphobic, considering. Email me for further details at allie_78@hotmail.com.

Lord willing, we will be having a celebration for this beautiful baby:

As I Type...

Right this moment, Allie and nurse Chris are waiting at the hospital to bring JW home!! Thank you to everyone who continues to be so faithful in lifting up our little man to the Lord for healing. Allie and Wacy still may be facing some big decisions regarding his care in the coming weeks, so please, please, please be praying for them. They need discernment, guidance, and absolute clarity from the Lord. They also need peace to rest assured the decision(s) they make are in line with God's will. Also, a big thank you to everyone who sent emails, posted FB messages, and left comments on the blog. Your kind and encouraging words mean so much! We are so thankful to have each of you in our lives and even more thankful that you are praying for JW and the family. We love you all and are so grateful for the love you return to us! And now for the bonus...I snapped a few cute smiley photos of JW from my early summer trip to TX and thought it was about time for me to share them!

-JW's Aunt Lindy

He loves his toy!



Watching Chris blow a bubble

Wow, March, April, May, June and July, plenty of hospital time for this cute little boy. Thank you to everyone who has kept him in their thought and prayers, we all needed a little lifting up to the Lord.



So, JW, aka, the cutest little boy ever, is currently in the hospital again!!, as many of you may know. He has had trouble with his respiratory system since November, whether it be a mucus plug or just a small cold, he has been through the ringer, poked and proded over and over again. But he still remains his happy little self, just smiling and giggling at all who love him and are around him. I think he has been the only one since September 16, 2008 that has kept on smiling and kept everyone else smiling. I am posting a picture of him taken Wednesday and I just ask for your continued thoughts and prayers as we are having to make some very difficult decisions over the next week concerning his care and managing his health in the way God has guided us to. We are at a fork in the road, where we will have to choose a little different plan of care for him because of his continued illnesses and extended stays in the ICU. Once we know more, I will post more detailed information on these issues, until then, I am just requesting some special prayers for guidance for my family and healing for JW.

This was taken on Aug. 1st, he was laughing at Tristin, alot! She was dancing and singing to him and even read him a book. We wore him out by the time we left.