A heart full of emotions

I have been rather reserved in my social life after James went to be with the Lord nine months ago. We have been growing and finding our way in this "new" life as a family. We recently relocated. We wanted a fresh start. Not so much to run away from the past but have positive change for the future. 

From reading this blog previously, you know that James has two siblings. Tristin, 9 and Mitchell, 5. Our life was so chaotic since September 16, 2008 that we wanted a shift; a more relaxed life with time to focus on the children who were unavoidably neglected in many ways. I think we have found that. Great school, good people and less hustle and bustle (no Walmart down the street).

I am hoping, with the time I have now, to grow as a Christian woman, a mother and a wife.

There were many things that were set aside when it came to caring for James which was ALL of the time. But I tell you, the second I no longer had that blessing I felt empty.

James far exceeded the medical professionals' expectations. I always had a feeling that things would be ok but mostly doubted that feeling with, is THIS "THE TIME". Losing James was the hardest thing I have and probably will ever do. I worked so hard to keep this precious baby boy alive and didn't want to give up. God gives you the grace to let go when you humanly can't.

James' birthday is on Sunday. I haven't decided what to do yet. I want the kids to be involved in something special to thank God for the day James came into our lives. I'll be praying for the perfect thing to remember what a special blessing he was to us and everyone who knew him. I encourage anyone to write a special memory you have of James, I would love to read them.

I am eternally thankful for everyone who supported, prayed, thought, cried and laughed with us as we went through this journey. The journey isn't over. I am hopeful to help other parents going through a similar situation and to be an advocate in the name of James Wilson Taylor for children who can't speak for themselves.

Please pray for our family as we continue in finding a new groove that fits our family like James did.

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.

Hey guys! Wow, the last title on the blog continues to be true. We are going on four weeks in the hospital!! ahhh. Nothing serious though, he is just taking FOREVER to wean off the oxygen. He is doing great other wise.

On Thursday morning, JW will be going into surgery for a port-a-cath. This is a small surgery that will only last about an hour, but will be under general anesthesia and be put on a ventilator with all specialist at hand. This port will help with medical emergencies and blood draws, etc. so he will not have to be stuck a million times only to not get an IV. To check out some info click the following: http://en.wikipedia.org/wiki/Port_(medical

We are currently on 2 1/2 liters of oxygen we still need to come off of that and recover from the small surgery and we'll be able to come home! YAY! It's been so long, poor little boy. He does however, get a lot of attention from the staff in the PIMC unit. They fight over who gets to take him for the shift.

Here are a few pics.. one includes JW's nurse Chris, who is wonderful and so special to our family. She was able to go with us one visit. Not leaving out other wonderful nurse out, Crystal is also awesome and very special to our family. but she has not been able to go with us yet. It's her turn next. Enough talk, here are the photos...

The Longest Stay

Hello to all again.


Just to update, JW is still in the hospital, today marks two weeks. Over the weekend he was starting to flair with his respiratory issues. He was on 2 lpm of oxygen but they had to increase to 4 then 6 lpm. He has been on 6 for the last few days and holding steadily. The xray showed some haziness that they believe to be the bacteria coming back that was supposed to be taken care of with the antibiotic. The bacteria is called pseudomonas, you can find some info at this website that might explain a little more. http://www.healthscout.com/ency/68/471/main.html


He is doing wonderful oftherwise, laughing, smiling, just a real joy for the nurses and child life staff. Here is a photo I took of him on Tuesday...
Sorry its a little blurry, took it with my phone.

He is getting so big, thank you everyone for your prayers, thoughts and encouragement. He is such a blessing to the world, especially his family.

Allie

will update as we progress

Look at our blessing!

So here are a few recent pics. We are in the hospital again, but should be coming home soon. Just wanted to post these, update tomorrow.

EMERGENCY! Call 911.

I never in my life thought I would have to call 911 for anyone in my family much less one of my own children. But as life has it, the EMS staff definitely know who we are by name. Lately JW has been having trouble with choking on his secretions that he can't swallow when he gets really upset. We had this in Nov. Dec and now in Feb.
On wednesday, I think, ( I am not even sure what day it is today) JW had one of his episodes and starting to lose oxygen with my nurse Crystal while I was shopping for something for dinner at HEB with the older two kiddos. I was talking with her and Chriselda, my other nurse, and things were getting worse, so we had to call 911. He was doing good when they got there but we sent him on to San Antonio because we weren't sure what was going on. Apparently during the flight he stopped breathing and they had to intubate so when we arrived at the hospital he was much worse than I was thinking.
He is doing much better now they are soon looking to take him off the ventilator. Today he was awake but still kind of groggy but looking much better.
JW has been growing and doing so well at home, he is just such a joy in our lives, a joy that I, with the help of my nurses and family, work very hard to have. I just want to let my wonderful nurses/family, they are basically family now, that I appreciate everything they do to help me keep my child well. I saw a little something at the hospital gift shop today, buying something for JW for valentine's day, that said "Nurses are Angels on Earth" and that is so true.
Thank you to everyone for all of your thoughts and prayers sent our way, they are greatly appreciated. I just felt like blogging a little, I will return soon with an update on how our little guy is doing and a few more specifics of his condition. God Bless!

Memory Lapse and Good News

So, I completely blanked and forgot to update the blog this past week! I have been on the phone with a few people and have given them the good news, which is probably why updating the blog slipped my mind. Sorry about that!

The good news is that JW came home on Friday! He was down to a half liter of oxygen and was then off oxygen for a while the couple of days prior to his coming home. They kept him until Friday just to make sure everything was ok. We are all very relieved and I know Allie and Wacy are glad to have him back home and for things to be back to normal.

We know that this good news is, in part, to all of you, our devoted prayer warriors! THANK YOU! Your prayers and support throughout the past few weeks has played a huge part in our family's hope and strength and JW's recovery.

Please continue praying for JW....for his healing and development and God's plan and purpose for his life. Pray for his nurses and caretakers. Pray for JW's doctors, that they be blessed with wisdom. Pray for Allie and Wacy in the decisions they are making and will make for his care and for courage, strength, and comfort for them.

I will try to get some new pictures of the not-so-little guy to post....as of last week he weighed 17 pounds! So, check back in the next few days.

Again, thank you to everyone who is praying and for those of you (and you know who you are) who have sent words of encouragement via email/Facebook or made those phone calls to let us know you care...it means more to us than words can ever express. God bless each of you.

~Lindy

So Much to be Thankful for...

JW is still in the hospital, but improving. He did have a rough night a couple of nights ago in regards to his respiration, but he is doing better now. He is still not at an oxygen level that would allow him to come home, but we hope he will be soon. I hope to be able to report more in the next day or so.

As Thanksgiving Day has come and gone, our family has so much to be thankful for. We are thankful for each other and the strength, hope, and faith that has resonated through and to and from each of us over the past year since JW's birth. It has been trying at times and we are blessed indeed to have one another. We are thankful for JW's life and how his life has touched each of ours in ways that can never be explained. We are thankful for Allie and Wacy and how they have gone through the tough times with grace and a maturity that is beyond their youthful years AND how they have still been the best of parents to Tristin and Mitchell through it all. We are thankful for Tristin and Mitchell too...how they both light up our worlds and bring such joy to our hearts. We are thankful for the love of God that has surrounded us and held us tight when we most needed it. We are thankful for the blessings of friends and extended family who continue to be so faithful and caring in lending a hand, praying, comforting, and much more. We are thankful for peace that comes only from God, Our Father, and how He has provided it when we needed it more than anything. And we are thankful for each of you, for standing by and showing your love for us and JW...may God bless you greatly, in the ways you need His blessing most. Thank you for following JW's story and praying with us.

~Lindy

On the Mend

JW was taken off the ventilator yesterday! Praise God for that! Poor little fella was pretty hungry and sleepy after being off his milk (overnight, I think) and having an eventful day all around. They have to take him off milk prior to removing the tube and ventilator. Allie said he was so fussy and she knew he just wanted to eat and sleep...so, he is feeling more like his usual self again. JW had been on 1/4 liter (per minute) of oxygen prior to going into the hospital but he is now using 4 liters per minute. Before he can go home, he will need to get down to a more normal oxygen level. Overall, he has improved greatly in the past few days and will hopefully be home soon. Please keep checking the blog or our facebook pages for updates. Again, there are not words to thank everyone for your thoughts and prayers through this ordeal and over the past year. Please continue to keep JW, Allie, Wacy, Tristin, and Mitchell in your prayers. May God bless each of you for your faithfulness and selflessness. We have so much to be thankful for as this Thanksgiving holiday rolls around. Let us remember how blessed we are throughout this week and always!

~Lindy

Improvment All Around

As we near the Thanksgiving holiday, today we are thankful for continued good news. JW has improved more and the doctors are hoping to extubate him tomorrow (Sat.) and get him off the ventilator. He may have to have a higher level of oxygen for a while, but I'm not sure on that just yet. Also, Allie says he was more awake today and she actually got a smile out of him, which definitely means he is feeling better. I will report more later Sat. night or Sun. morning. Thank you again, for all the prayers, thoughts, and kind words you have sent JW's way. He is an amazing, resilient little guy and we are so thankful for the answered prayers of many when it come to him.

Nov. 19 update

I just talked to Allie a couple of hours ago and here's the latest...JW's overall condition has improved since yesterday. His lungs are looking better and the ventilator was lowered, meaning he is able to do more on his own. All good stuff! He is still listed as stable, but he is still in PICU. His blood pressure is back to normal and they have started him on a chest physical therapy machine or CPT which uses rhythmic vibration or percussion applied to the chest wall to loosen secretions from the respiratory tract and/or force them from smaller airways into larger ones where they can be better dealt with. Allie said this made a huge difference in JW's respiration quality. Allie and Wacy are headed back again tomorrow, so I will update once I hear from them. Thank you, thank you, thank you to everyone who is so faithfully praying for JW and our family. It is because of each of you and God's grace that JW continues to improve and recover from a grave situation AND that our family manages to hold ourselves together in love and strength. Blessings to you all.

One more thing, Allie forwarded a photo of JW taken today and after much debate, we have decided to put it on the blog...mainly so everyone can see 1) how big the little guy is now, since we haven't put up any pics in a while and 2)the reality of JW's current situation. If you are sensitive to things of a semi-graphic nature, please do not view the following photo, but I, personally, do think it is any worse than the ones shown in the earliest posts on this blog. We do realize some of you may be sensitive to such things, hence the following warning.

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WARNING: The following photo may be graphic in nature, please do not share this photo with your children or anyone who might be sensitive to its nature.
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Nov. 18

Please be praying for our little guy as he is back in the hospital as of yesterday. Early yesterday morning, Allie was alerted to JW's respiratory distress and within a short time he was air lifted to San Antonio. His left (not his right as previously reported) lung is collapsed; he is intubated and on a ventilator as his body is having difficulty supporting his respiratory needs. He was also having difficulty regulating his blood pressure, which is now being managed with the help of medication. Overall, he is stable, but still in the pediatric ICU. We believe his current condition was brought on, first, by an ear infection that caused other complications and caused him to have excess secretions that he aspirated on. Allie and Wacy are on their way back to SA today and we should have more news this afternoon or evening. Until then, please pray for JW's health, a speedy recovery, JW's doctors, and Allie and Wacy for strength. More to come as soon as I hear an update.

~Lindy

PS. An update on the last post regarding the geneticist's report. The dr. found nothing in all of the test results that would lead him to believe any of JW's health issues stem from a genetic source, but instead were likely caused by "birth injury", whether this occurred in the womb or during delivery will probably never be determined.

Thank you to all who continue to pray for JW and our family. God and your prayers are the source of our strength and hope.

Update Time

Allie is, as I type, on her way with mom and JW to the geneticist to get the full report on all the findings of the genetic testing done to see if, maybe, some of JW's issues are genetic. We are doubtful that this is the case, but please lift them up in your prayers that maybe we will have some answers and that they will be blessed with safe travel today. We will post an update with the news they receive.

Also, JW has an appointment on October 8th with the orthopedic doctor to discuss options and where JW stands with his hips and scoliosis. Hopefully, at that time, JW will also be tested to see whether or not he is a candidate for the titanium rib procedure which will help with the scoliosis. Please be praying that he is indeed a candidate for the procedure and that the doctors can finally begin working to alleviate some of his health issues. By alleviating the scoliosis, JW may be able to breathe better as the titanium rib should take pressure off his lungs by helping him to be more upright, stretching out his chest and abdomen. Each day, as JW grows, his lungs are being kept in a cramped position and are not being allowed to grow and change with the rest of his body....thus becoming deformed. This is a MAJOR issue for him, so we would greatly appreciate your prayers for JW and his doctors.

Now for his latest "first"...JW has his first tooth! One of the nurses noticed it about a week or so ago and I wish I had pictures to post, because I haven't seen it myself. I will get some from Allie to post or have her post some soon. Just another praise for our little man who is growing bigger and stronger every day.

JW's lungs are also getting stronger...he is now being taken off oxygen for most of the day and while off, his oxygen saturation rate is remaining at 100% or in the high 90's! This is very good news, considering the scoliosis keeps his lungs very cramped and doesn't allow him to expand his chest fully.

So, all in all, good news all around. JW also managed to stay healthy while Allie, Tristin, and Mitchell ALL had a nasty stomach virus. Thank you Lord! Your prayers are working! Please remember JW and his many needs, but also remember to thank God for all the good stuff!

~Lindy

Who's the Birthday Boy?!?

Yep, today is JW's FIRST birthday. I can't believe it has been one year! He has changed and grown and progressed so much since the day of his birth. Who could have imagined how this little boy could impact and change the lives of our family forever? I am so proud of JW for being such a fighter and I am so thankful to God for him, for my sister, and for her family...for their strength, courage, and faith through it all. May God continue to bless JW and may we celebrate this day with thanksgiving and love for years to come! HAPPY BIRTHDAY JW!! Birthday wishes can be posted here, on Allie's Facebook Page, or emailed to her at: allie_78@hotmail.com.

PS. I looked up JW's birthverse (www.birthverse.com) and his is Genesis 9:16..."Whenever the rainbow appears in the clouds, I will see it and remember the everlasting convenant between God and all living creatures of every kind on the earth."

I couldn't resist so, Allison's is Isaiah 9:6...For to us a child is born, to us a son is given, and the government will be on his shoulders. And he will be called Wonderful Counselor, Mighty God, Everlasting Father, Prince of Peace. I thought this was interesting...as Jesus was a "special son"...so is JW. And Allie was hand-chosen by God to be his mother, just as God chose Mary to give Jesus life. His plan is so perfect, isn't it?!?

Enjoy this day, celebrate with us and give thanks and praise to God.

~Lindy