Update and Prayer Request

I know some of you are already aware of the situation with JW over the course of the past 2 days.  I thought I would go ahead and post so that if anyone didn't know, you could be praying.  The past week has been one of no sleep for Allie.  JW has again been having his "episodes", for lack of a better word to describe them at this point.  He also hadn't really been sleeping much at all for almost 3 days, starting on Sunday or Monday.  Monday was one of the better days but Tuesday and Wednesday about did everyone in.

First, let me update on some other things.  Mom and Allie took JW to San Antonio on Tuesday for another check up.  He received botox injections in his limbs to help relax the muscles in his arms and legs.  You could definitely tell a difference in his range of motion and just in how he was holding his arms and legs.  A change for the better I would say.  No other big news there. However, on their way home and while in line to get dinner in Uvalde, JW had another episode.  Allie calmed him down, but then as they were pulling up to the window he had another.  To give you a better picture of these episodes...it is like JW gets VERY upset about something and cannot calm down.  We don't know if he is hurting, too hot, too cold, doesn't like the light, or the dark....we just don't know what sets him off.  Regardless, it is near impossible to calm him down and then all of a sudden, out of nowhere, his heart rate plummets.  This is often accompanied by a big drop in his oxygen levels as well.  Most times he recovers from this on his own, only to do it again.  Our worry is...what if there is one time he doesn't?!?!  Also, we are concerned there is a link between his being so upset, these episodes and his not sleeping for almost 3 days.

Allie and mom took him straight to the ER in Uvalde and of course, he was fine the rest of the evening, so they took him home.  The next day (Wednesday) he had small episodes off and on.  I finally went over to offer any help I could, which isn't much since I don't know JW's routines, etc.  Mainly I was there for moral support and in hopes my sister would get some rest.  We were up ALL NIGHT.  I got there at around 9pm and between then and 4am JW only slept a total of, maybe, 30 minutes.  He also had at least 3 of these episodes.  Through the first two, which happened close together around 1am, Allie called JW's doctor.  He told her that if JW had another one, to go ahead and have the EMS take him to the hospital.  The doctor wanted JW to be transported should anything go wrong, and so he could be on monitors where they could see the episodes and what was happening with his body at the time.  Mom and Allie took him on to San Antonio the next morning after another sleepless night in the Uvalde ER.  JW was stable all night, so they decided to forego EMS transport and take him themselves.

They made it 20 minutes out of Uvalde and he had another episode.  Let me tell you that these episodes are nothing you can take lightly...they literally scare the living daylights out of you and you are there standing over JW hoping that he calms down and comes back from it.  It is purely nerve wracking!!!  They made it to the doctor's office and while in the office, JW had another episode.  Thank goodness they were there for the medical staff to see it!!  The doctor immediately had JW admitted to the hospital.  They performed an EKG and a variety of other tests, which we are awaiting results on.  Mom and Allie checked into a hotel and finally got a solid night of rest.

After staying up with Allie Wednesday night, I can tell you she has been living on pins and needles.  She truly has had no rest all week until last night.  JW requires around-the-clock care and monitoring.  We are praying that the tests they ran yesterday will provide some answers or at least, insight as to why he hasn't been sleeping and what is causing these scary episodes.

We need your prayers during this time and on into the future as JW has a very long road ahead as do all of us with him.  Please pray for his doctors, that God will give them wisdom and discernment to seek out what is wrong and provide JW with the best medical care possible.  Pray for Allie that God gives her the strength and endurance needed to run the race set before her.  Also, that she will take care of herself (stay healthy mentally and physically) so she can care for JW as I know she desires to care for him.  Pray for our family to know how the rest of us can help Allie and JW when they need us.  We all also need prayer for our emotional stability and strength as things get very tense, very quickly.  We need to stay strong and praise God in this storm!  We also need God's comfort and to feel his love surround us.  Pray that God will allow us to see, even a glimpse, of his purpose for JW and all that JW is going through.  Also, remember Wacy while he is at the Border Patrol Academy and Mitchell and Tristin who are coping with all the changes at home and trying to understand what is happening around them.  I thank all of you for your prayers, we have felt them.  Thank you for your love, support, and encouragement.  I pray that God blesses you immensely.  I will update as soon as I receive any new information.  

May the blessings of the Lord be with you today and always,

Lindy

Sleep deprived and delirious, but he is doing well, praise God!

Okay, okay, I know everyone of you must be mad at me, but, the last time I was this tired was when Leigh and I pulled an all-nighter to finish the newspaper's Hunters Guide.

Normally with new little ones, you sleep when they sleep, except when you have a 5 year old and a 1 1/2 year old running around screaming noooo at each other at the top of their lungs. Enough of the chit-chat.

Since coming home, JW has been doing, I think, better than expected but not as well as we all would like. 

He was doing really well for two weeks and then Sunday a week ago we had the scare of our lives. I am still not exactly sure what happened but we ended up having to call EMS.

I think these "episodes" are Gods way of teaching me how to care for JW. It is very scary to know that at any moment his heart rate or oxygen levels could drop or even worse. He takes a lot of care and thankfully my mom has been here to help me as well as the rest of the family for emotional support.

Anyway, Kinney County EMS were wonderful, they got to my parents house in absolutely no time at all. By the time they got there, JW was doing better but they still didn't think something was right so they took him on to the Uvalde ER. We waited... and waited for the nurses to try to get an IV on him, he was poked so many times, the poor little guy. He had stabilized but Santa Rosa was sending a Pediatric team via Air Life to transport him there to make sure he was ok. Finally about 1 am, I think, time was not important to me at that moment, the team got there, finally got an IV and loaded us up for our helicopter ride to San Antonio. 

Now, I have never ridden in any sort of aircraft, so this was definitely something new for me. One of the team members asked me if I was nervous, I told him no, that I was actually excited because I had never flown before, just not exactly excited about the circumstances under which I was going fly. 

We made it to Santa Rosa and immediately got him in a room, the nurses checked him out and hooked him up to all of those monitors again. He did wonderful all night long and I actually got to sleep. Long story short, he did fine and was released Monday afternoon. 

Since then, he has been doing really well, no episodes like before. I just pray every second of the day that he continues to move forward, continues to heal, gain strength and be able to hold his own. 

Sorry if I am rambling, there has been a lot going on for me to remember everything especially with a lack of sleep. 

Tomorrow we have a check up appointment with the pediatrician and we are supposed to meet with the pediatric neurologist, please pray for the best for this precious baby. 

Thank you for all of your prayers and for keeping up with us, even though I have been very bad over the last three weeks with blogging.

Love and faith,

Allie

P.S. I will have some new pics up in the next few days, so check back hopefully by Wednesday.

The Day we have been praying for...

The day we have long awaited for came yesterday, Monday, December 29. It has been close to four months since JW made his way into this world with such a dramatic entrance and he finally made it home (Grammy and Poppy's house temporarily). We had tried to 'room in' with him a couple of weeks ago and he told us it just wasn't time for him to come home. 

We went to stay with him on Saturday in hopes of leaving the hospital with him. Everything went smoothly, we learned about everything he would need and how to care for him. We made it through the night and then Sunday and then boom, came Monday. We were finally discharged, with my Aunt Becky, Uncle David and Cousin Kim there to see us off. It was a beautiful day, one of the best in my life. Thank you to all of you that kept our family in your thoughts and prayers. I am amazed at the progress JW had made in the last few months. Please continue to pray for us and JW as we still have a lot of work ahead of us. Thanks to God who has watched over our family and touched our lives with beautiful blessings, especially now, having JW at home. 

Lots of love and great thanks,

Allie

P.S. As excited as I was to be bringing JW home and trying to make sure I had everything... I forgot the camera! I know I should remember a camera especially having worked at the newspaper. So anyway, we had to buy a disposable camera and I have yet to be able to develop them, but.... when I do, I will definitely put the pics up on the blog.

New Pics From Aunt Lindy's Camera!

Finally, some long awaited, recent photos of our little guy.  He looks VERY different from those first-time photos!  He is growing and looking more like a little boy every day!  The next couple of weeks will be very critical for JW, Allie, and all of our family as we prepare for him to come home from the hospital and tend to all our holiday plans.  Please be praying specifically for JW's continued healing, our family's strength and perseverance, and wisdom and discernment for JW's doctors.  Your prayers have made such a huge impact thus far, but JW still has a long road ahead.  Also, be praying for Wacy as he is currently at the Border Patrol Academy.  Enjoy the pics and stay tuned for more updates!

~JW's Aunt Lindy

It's getting closer....

Our precious little boy is getting closer everyday to coming home to his family.
Today, he weighs 6lbs, 4oz. He is doing well on his new g-tube. He is also off all oxygen and air through a nasal cannula.
Also, today he was moved back into the special care nursery in preparation for myself and Grammy to stay over night with him on Sunday.
We will be taking care of him, with nurse guidance, for a full 24 hours. We have to learn how to do everything the nurses do for him. I am not sure yet exactly when he will be able to come home, but we are definately getting closer. I believe it will be sometime this week. I just don't know what day.
Thanks to everyone for your thoughts and prayers for James Wilson. We still have a long road ahead of us, but it will be better for him once he gets home.
Please continue to pray for God to heal our precious little one so he may have a full recovery.
P.S. I didn't get any pics of him when I was there last, my camera would not work. So.... new pictures soon, I promise.

What a sweet angel...

I finally got to go see the growing boy on Tuesday, after not seeing him for 2 weeks! The poor little guy must have thought he had been abandoned. I had gone one weekend to see Wacy, started working again, to which now I am not. With the news of him coming home soon I said bon voyage to the paper. I also had come down with a cold, so I didn't want to expose him until I was completely over it. 

Anyway, JW is again in a crib, yeah! He weighe

d 6 pounds, 2 ounces yesterday. He has stayed over 6 pounds but does go up and down still. 

We were introduced to a milk pumping machine that will

 feed him when he gets home. That was interesting. We have so much to learn in a few weeks. 

He is doing well otherwise. They did a test on his liver

 because he is still a little jaundice. The are going to do a few more tests to find out exactly what is going on to cause that. 

We are looking at a couple more weeks and hopefull

y everything will go well, we won't have any more set backs and he will finally get to come home. 

Thank you for the prayers, thoughts and please keep th

em coming. We are getting closer and closer everyday to him coming home to his siblings. 

Here are some pics of him taken on Tuesday, the first one was taken by one of the nurses at Santa Rosa. 

A Whopping 6lbs, 4oz.!!

JW's doctor called me yesterday with an update. This week hopefully the orthopedist will look at his hips and decide what to do, whether it be a cast, brace, etc. He is also looking at him coming home in the next couple of weeks. Everything else is pretty much the same, he still has the nasal cannula with just an airflow. He is gaining weight very well, actual weight not water weight. Yesterday he weighed as mentioned in the title, 6lbs, 4oz. More to come as he grows and God blesses him.