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

There Will Be a Day

As JW's 1st birthday approaches, I can't help but think back over the past year and become overwhelmed with feelings of thankfulness, amazement, love, sorrow, joy, relief, fear, wonder, and too many others to list. I am so thankful for little JW, as, I know, is the rest of my family. I am amazed at God's greatness, His love for us, and our love for each other. I am saddened that the past year's events happened to my sister's family, our family, my nephew...you never believe it will happen to anyone you know until it does. I am overjoyed that JW is doing so well, that God had a plan when He chose Allie and Wacy as JW's parents, and that I am blessed to have witnessed a miracle through JW's life. I relish the present and every step JW takes in progress. I am relieved to know God has purposed each of us into existence, JW included, and He is in control of everything! I stop myself each time I start to ask why. Why did God allow this to happen to JW, my sister, her family, our family? We may not know the answers to these questions and thousands of others until the day we meet our creator, but does it even really matter? I don't think so. We must rest in knowing that the day will come....the day when JW will be healed, completely, when we will understand it all. Whether it happens in this lifetime or the next is not up to me or anyone else on this earth. I look forward to that day. I pray that he will be healed now, tomorrow, effective immediately, ASAP...but if God chooses to wait until the next lifetime I will celebrate then too. Until then, I will keep pressing forward, praying, hoping, wishing, but looking forward, trying not to question this life, but looking to the day when there will be no more pain or suffering and for certain, JW, and the rest of us will be healed and made perfect! In other words I have hope! One of my favorite songs ("There Will Be A Day" by Jeremy Camp) addresses just this...I pray its words can help put things into perspective for you as they have for me. Please take a moment to listen to the song below.



I will celebrate the 16th of this month with my family, though not in person, I will be celebrating in heart and spirit. I will celebrate the life of our miracle, JW. I ask that each of you please celebrate with us. We give thanks for his life, for each of you, our faithful prayer warriors, family, and friends. I would also like to invite each of you to commemorate this special date by sending a little something JW's/Allie's way....a note of love or inspration, a birthday card, an email....just something to express your thoughts, prayers, hopes, wishes, etc. Email me at raynese01@hotmail.com for Allie's address or email. Allie has informed me she will be blogging soon with a real update, the official birthday blog, and some exciting news about JW. Please feel free to leave your comments and best wishes for JW on his 1st birthday. Thank you again for your kind words, thoughts, and prayers over the past year...keep 'em coming! Until next time...

JW's Aunt Lindy

Are you mad at me?? ahh.. AN UPDATE!

So sorry, it has been a long, long time since I last updated, I am a terrible blogger, Lindy is definitely better at it than I am.

JW had a hospital visit in May when he was admitted for pneumonia and was on a high flow oxygen for a week. We haven't been back since, except for follow up appointments.

JW has scoliosis, which he will most likely need surgery. We will find out about that in August, if he will be able to handle the extensive surgery and replacements every six months.

We also have two nurses now, instead of just one, to cover 7 days a week, 10 hours a day. They are wonderful and work very well with JW.

Here is a farely recent pic of him with the occupational therapist sitting him up..

He is now 10 months old and improving a little each day, he even giggles a little, it's the cutest thing.

Thank you for your thoughts and prayers, God is listening.

Allie

One more step with God's help....

If you haven't heard already, JW is officially in a regular car seat!! What a huge relief. Thanks to you who have prayed for him and especially for the car seat test.

We went to San Antonio on April 21 for the car seat study and to discuss botox injections.

JW passed the car seat test with flying colors!! He did absolutely wonderful, no problems what so ever. This was a huge feat because if he didn't pass, we would have to travel with him in an ambulance, a big inconvenience.

Here is a photo of the big boy in his car seat...

JW officially weighed 14 lbs, 1 oz. at the doctor on Monday.

Unfortunately, we had to take him in to see our family doctor in Uvalde. He had been running a fever since last Wednesday, and was on two different antibiotics that weren't helping. We were afraid he had another bad case of pneumonia or the flu and another possibilty. BUT... all good news, well mostly. He had none of those, just a virus that had to run it's course. Today he is feeling much better. YEAH!! no hospital. We were so relieved when we walked out of the doctor's office.

Today, we also had an occupational therapy consultation. The therapist will be coming twice a month along with physical therapy, so he will be getting something from the professionals once every week.

I just wanted to update on the car seat study and give you an updated photo.

Just for giggles I am adding photos of the other two kids, Tristin and Mitchell.

Tristin relaxing. Mitchell trying to sneak candy.

Appointment day tomorrow...

Tomorrow we have a big day ahead of us. We will be doing a second car seat study to try to get the growing boy into a regular car seat. He is currently in what is called a car bed, just a flat car seat that rides sideways in the vehicle. Please pray that the Lord will give JW the strength to be in the regular car seat, otherwise, it will be an ambulance ride anytime we have to go anywhere. He will have to prove to the doctors that he can handle being at the 45 degree angle for 1 1/2 hours(the time it takes to get to S.A. from Uvalde).

We also have an appointment at the feeding clinic, which will once again assess his ability to handle his extra secretions and swallow. We are praying hard for this one also!

The last two weeks, he has been doing awesome!! Not having to suction as often.

We also see the neurologist for his botox treatment tomorrow, I have very mixed feelings about this procedure. It has done wonders for his tight muscle tone, but we still aren't sure if it caused his respiratory problems shortly after the last injections. I pray God will give me the wisdom to decide what to do in the best interest of JW.

Well, as most of you know, WE HAVE MOVED! Finally, it was a chore getting JW moved. Compared to his stuff, the rest of the house was a breeze. The problem with his stuff, is that you had to know exactly where everything was, but with the help of my mom and dad and our nurse, Albert, we got it done.

We are happily settling into our beautiful home God has blessed us with.

Tristin has adjusted to changing schools near the end of the year very well. She loves it. I am so glad things went smoothly with that.

I am adjusting to being a full time mom at home! Ahhhh! Just kidding, I actually have more time to keep the house clean, wash clothes, all of that good stuff that we love doing. Not to mention more time to spend with the kids.

Occassionally, I have to call my adopted sister Leigh, or make a trip to Brackett to chat it up. I don't get very much socializing in Uvalde yet.

Anyhow, we love where we are at and love being a family again.

Thanks to my parents and my sis Lindy to all they have done to help us during the most hectic time in our lives. love you guys!

Here are some cute pics of JW, now 7 months old!! oh! I almost forgot, We have been home now for ..... I am starting to lose track it has been so long... I think 7 weeks going on 8. Hooray! Praise the Lord.

Thank you for your prayers for our little boy, they are certainly working on this little miracle. We see improvements every day as he grows stronger with love and strength God and his family gives to him.

- Allie

Say Cheese for the Camera!

We have made it 4 weeks without any emergency trips of any kind! Praise the Lord!!!

JW is weighing over 11 pounds and has been doing well on a small percentage of oxygen. We had to bump his oxygen up some for a couple of weeks to maintain his saturation level above 93 percent.

We had an appointment with the eye clinic at santa rosa... good news... JW can see better than me! That was such a blessing.

He is near sighted, just like his mommy and his sight in his left eye is minus 3 and minus 4 in the right eye. He will need to have corrective lenses in the future.

We also had our last Synagis shot which helps protect him from RSV, a virus that could be deadly should he catch it. It has such a horrible effect on baby's respiratory system and with his not having a strong system anyway, it wouldn't be good.

Thankfully we have been virus free.

On April 9th we will have our follow up appointment with the ortho doctor about his dislocated hips and have some answers to all of our questions in that subject. We will also have an audiology appointment to see how well he hears. We definitely know he hears loud noises. He wakes up from a sound sleep even when I walk into his room talking on the phone. Please say a prayer for those appointments, pray that we have all good news concerning these two issues.

Finally, I have a beautiful photo for you of this cute little boy smiling!!

Thank you for your thoughts and prayers and for your support and strength you have given our family.

I know I repeat myself on that one, but we are so appreciative of everything everyone has done that I feel I need to say it.

Please continue to pray for this precious little boy and may God continue to heal him from his rough entry into this world.

We have come a long way on God's road, it has been bumpy here and there but thankfully it is smoothing out for now.

Love and Faith,

Allie

Finally...a photo!!!

I know this is what you all have been waiting for.......

James Wilson Taylor

6 months and 2 days old.

Yesterday we had follow up appointments with the gastro interologist, the g-tube surgeon and a follow up from the last hospital visit.

All appointments went well, his biliruben level is getting better, his g-tube site looks wonderful and his lungs sound clear. All good things for this little guy!!

We are gaining weight and starting to move more...God's miracle at work!

I will try to write more later, my brain isn't awake yet, but at least you can see the growing boy!

Allie

Happy, happy 6 month birthday James!

So yesterday was little JW's 6 month birthday! Ahh (a sigh of relief), we have made it this far! Half of the first year down, the other half to go. We have been home just almost exactly two weeks from our last stint in the hospital, yeah, and doing really well. Tomorrow we have a doctor appointment and hopefully all is well with his little lungs. Last I looked, JW weighed 10lbs, 4oz. 

Thanks to all of you who have kept us in your thoughts and prayers, we appreciate everything that everyone has done for us. Keep up the prayers!! They are working!

More to come soon, I will update after our appointment.

Praise God for His miracles, including JW!

Allie

Home Again, Home Again

Good news!  JW is home from the hospital and doing well.  We are ecstatic that his trip didn't last too long!  I think it was more of a precaution than anything.  He also started to move his left arm more, including his fingers!!!!  This is huge for him.  Hopefully more improvements in his movement will begin to surface as well.  His lack of muscle tone is one of the possible reasons for his respiratory issues.  So, the more he moves and gains muscle strength the better he will continue to do.  Also, someone from ECI came yesterday and worked with him doing therapy.  The person (sorry, can't remember if Allie said it was a man or woman) even sat JW up and Allie said he loved it.  He liked being able to look around...wouldn't you after being in a bed for almost 6 months?  We are still waiting for more answers on JW's hips.  He goes to the doctor, I believe, next week for that appointment.  Please pray that the doctors will have some answers and a plan of attack as it is becoming more apparent that his hips are actually bothering him...and it makes sense why he can't move his legs with his hips dislocated, don't you think?  Hopefully we will have more insight into this issue and what the doctors are planning to do about it.  Please keep those prayers coming...they are working miracles!

Lindy

Late Night Update

JW had been running a periodic fever (very low-grade) for a couple of days, so yesterday afternoon Allie and the nurse on-duty took him over to Uvalde for some chest x-rays to see if the pneumonia was back.  The x-rays looked a little fuzzier (meaning fluid/congestion in the lungs) than usual so the decision was made to take him on to San Antonio as a precaution.  It looks as though the pneumonia was starting up again. :(

I got this news at around 8pm last night on my way home and this was the last I heard.  I should be getting an update sometime this morning and will post more news as soon as I can.

Please be praying for JW...physical strength to overcome this illness for good, wisdom for the doctors to find the root cause of his respiratory issues (he seems to be making headway in all other areas much faster than with his respiratory problems), and for Allie, Mom, the nurse, and the rest of us to do the best we can with what we are dealt and to hold fast to our hope and our sanity.  Thank you for all you do and for all the sweet comments I have gotten in person, via email, etc.  I am glad to know you are reading this and praying for JW!

Lindy

Controlled anxiety and a bath

The nursing Lindy was telling you about has been an absolute BLESSING FROM GOD! We have a nurse coming every day of the week from 8am to 6pm. 4 days of the week for one nurse and the other three for the other nurse. They take care of him with their professional medical knowledge vs. my mothering knowledge, which in JW's case just isn't enough.
Monday JW got his first REAL bath with a baby tub of water, with the help of our nurse. This is huge for him after all of those spit baths as my mother calls them. He didn't really like it but day after day, he is starting to enjoy them.
Today, he weighs 9lbs, 5oz. Hooray. He is 21 1/2 inches long, he is like a newborn.
The nurses work really well with him in doing his exercises and range of motion. There are small improvements but they are huge for him. He is getting better just very slowly. Thanks to everyone for your prayers, they are working. JW is starting to move his hands and fingers and feet more than before which was hardly at all. Even though the movements are slight, it's a huge step.
I just wanted to give a small update while I had a second and show everyone the photo of his very first bath taken by big sister, Tristin.

Once again, thank you for your support and prayers, I am forever in debt to you who have thought of JW and our family day in and day out and for your prayers for this precious baby of ours.
Love and Faith,
Allie

A Little Help Please!?!?

A nurse arrived to evaluate JW yesterday and he has been assigned 70 HOURS OF NURSING HELP A WEEK!!!!  This is terrific, better than terrific, news!  Mom and Allie will be able to get some much needed rest throughout the week and having a professional on-hand will give everyone some peace of mind.  Allie and the nurse, whom I haven't had the pleasure of meeting yet, took JW to all his long-overdue follow-up appointments in San Antonio today.  I will report back with news from these appointments as soon as I hear anything.  

Lindy

At Home

JW is home once again and doing very well.  Thank you to everyone who has been praying and is continuing to pray for our little boy.  We are hoping a nurse will be out in the next few days to evaluate him and then have someone being helping out with care for him throughout the week.  We will be updating more soon.   I will also try to get some new pics of JW to post since it has been awhile.  Thank you again to all of you for your support, love, encouragement, and prayer. 

Lindy

Concerns and Coming Home

Allie heard from one of JW's doctors today that they are preparing to send him home tomorrow.  His breathing is much better, having improved greatly over the past couple of days and he seems to be on his way to a full recovery from the pneumonia.  However, we did have a couple of concerns, which Allie expressed to the doctors recently.

Since his breathing and recovery wasn't happening as quickly as the doctors would have liked, they started looking into other possible causes for JW's condition.  One was they did another MRI of his head to ensure there were no changes in his brain that could be causing the changes in his respiration.  Good news...there were no negative changes!  So, some changes were made to his medication and those changes seem to have done some good.

However, there have been a couple of other concerns that have surfaced.  First, Allie found out that children exposed to chicken pox shortly before or after birth have a greater risk of CP (cerebral palsy).  One of our greatest worries, and that of JW's doctors, has been the possibility of him having CP.  Allie has discussed this with the doctors and again, we won't know anything further on this possibility for a while longer.  Another concern that surfaced in regard to JW's breathing issues has to do with the Botox treatment he received a while back.  Last year (Feb. 2008) the FDA issued a warning about using Botox to treat muscle spasms, etc. specifically in children with CP and/or respiratory issues.  In fact, Botox is NOT approved for use by the FDA in these situations.  Therefore, correct and safe dosages for such usage is not known or well understood and many times, patients are overdosed (many times more than an adult patient receives for the cosmetic version of this treatment).  This overdosing causes the toxin to spread to parts of the body beyond the injection site and leads to Botulism poisoning.  This, in turn, can lead to respiratory distress and in a few instance has led to worse.  Since JW's pneumonia and breathing issues began shortly after the Botox treatment on his arms and legs, we were initially concerned that it could be the cause.  However, the doctors do not believe it is related and that instead, he is just taking a little longer to recover from the pneumonia.

Since there are still so many "if's" for our little guy, we ask that you please be praying about the things mentioned in this post and his health, in general.  We trust the doctors and know that JW has been receiving excellent care, but you just never know...something could be missed or something could change or something new could come up.  Please remember him.  Pray also for safe travel for Mom and Allie as they head to SA tomorrow to, hopefully, bring JW home.  I will have the other two kiddos and Tristin is not feeling well, so you might just say a little prayer for her health and for the rest of us in preparation for JW's return home....there is always much to be done.  Our love to you all.  

Lindy

5 Months Old Today!

Today we celebrate miracles.  Over the past few months our family has been SO blessed to have experienced more than one, at least in my opinion...these are just a few that stand out in my mind.  Miracle #1: the creation of our precious James Wilson by God.  Miracle #2: JW's timely entrance, though traumatic as it was, into this world on this very day 5 months ago.  Had it been any later, his chances of survival would be have been much worse than they already were.  Miracle #3: JW is alive today having overcome many difficulties he has already been faced with as a mere infant.  Miracle #4: JW is doing exceptionally well and has progressed so much over the past 5 months!  Better than we could have hoped for in many instances.  Miracle #5: Our family's faith has held fast to the strength of our Lord and the hope we place in Him for JW's life.  Miracle #6: That all of us, especially Allie, who have been traveling so much back and forth to San Antonio have remained safe in our travels!  Hallelujah!  Today I ask that each of you, especially my family, get down on your knees and thank the Lord for our little boy and all the miracles in our lives.  Thank you, Lord, for keeping your promise to never leave us and especially for being with us and with JW over the past 5 months.  Thank you for this precious child you have blessed us with!  Help us to continue to lean on you with faith that is unwavering.  You alone are our strong tower!!  

As for JW's progress...he is still in the hospital but is continuing to show improvement.  He is mainly having trouble processing and dealing with all of the heavy congestion he is experiencing.  The doctors and nurses are trying various avenues of treatment to help him overcome this issue.  Allie went up on Saturday instead of Friday and expressed to me that she felt JW was definitely improving more now with his changes in treatment.  Still no word on him coming home.  I think they are putting off all talk of that until he is truly out of the woods with all this congestion stuff.  We ask that you continue to pray for his healing, our safety and strength, and anything else you feel led to.  Thank you for these prayers in advance and continue to know how much your support means to all of us.

Lindy

Update and Exciting News!

JW is still in the hospital fighting off the pneumonia.  When he is awake his breathing seems to be pretty labored at times, so a pulmonologist was called in to see him.  She decided to up some of his medications and make some other changes in hopes of helping him deal with the extra congestion and secretions he has been having.  Still no word on when he will be coming home.

Some exciting news....one of JW's nurses said he was sucking on his pacifier a bit!  Allie confirmed this for me as well and said that he was actually sucking on it pretty well.  This could mean that he is also swallowing better.  The nurse mentioned talking to JW's doctor about doing some tests in the near future to find out when he might be able to eat on his own (swallow milk, mainly).  I don't believe this will be happening too quickly as we have a few other obstacles to overcome first.  This is very good news and we are hopeful of a few things: that his swallowing and sucking reflexes are beginning to work correctly and that, in turn, the area of his brain that controls these reflexes, which we were worried about possibly being damaged, is not so damaged after all.  In addition, this means your prayers are working...they are being heard and answered!  Please continue lifting JW up in prayer for healing and for the family for strength to deal with all things that are coming and may come our way.  Thank you to everyone who has been praying, calling, bringing food, etc., etc., etc.  May God continue to bless you in every way.  

Allie is headed to SA again today.  I will update with any additional news I receive.

In love and thanks,

Lindy

Overdue Update

Sorry!!!  I know I said I would update the day after my last blog, but things just happened.  I had a commitment out of town and at the same time came down with ferocious cold.  I am finally feeling better today, so I thought I should take this opportunity to update everyone on JW.

He is still in the hospital, but doing better.  After the first day, he was taken off their super dose of oxygen and IV fluids.  He remains on antibiotics and more frequent breathing treatments.  Chest X-rays from a couple of days after his admittance showed slight improvement, but he was still not where they wanted him to be.  He was possibly going to be released yesterday, but Allie received a call that they were going to keep him a little while longer.  I talked with her yesterday while she was en route to the hospital, but haven't spoken to her today to get an update.  All in all, our little guy is doing well, but still fighting off this pneumonia.  

Thank you, thank you, thank you to all you who have been praying.  I will update again soon.

Lindy

Darn Pneumonia :(

After hanging on for another week with what we knew to be some kind of respiratory infection, JW is back in the hospital as of this morning.  Mom, gracious Aunt Annie, and I stayed with the little guy Sunday-Tuesday so Allie could attend Wacy's graduation.  Let me just add that we are sooooo proud of him!!!  Congrats Wacy!  Our stay with JW forced me to learn about everything that he requires as far as care goes.  And let me tell you, Allie is not in the least bit exaggerating about the amount of work it is.  It is TRULY round-the-clock.  We were up almost every hour to take his temperature (since he had been running fever off and on), meds and milk every 3 hours, suctioning as needed (maybe multiple times per hour or not), changing diapers, cleaning his g-tube, checking oxygen levels and pulse, etc., etc., etc.  It can become quite overwhelming, even after only one night without decent sleep.  Zombie is the word that comes to mind, actually.

Well, for the most part JW did pretty well over those couple of days.  He really held his own, with the exception of the intermittent fever.  However, once Allie came home, his fever continued and his breathing became more labored.  So, after speaking with the doctor, they made plans to take JW into the clinic in SA early this morning, before his other doctor appointments in SA.  Once the staff evaluated JW, they immediately recommended he be admitted to the hospital.  He was diagnosed as having pneumonia and is currently in the ICU at Santa Rosa Children's Hospital in SA.  They have started him on IV fluids and and a stronger antibiotic along with more breathing treatments.  We have no idea how long he will be there as of right now.  I will update tomorrow when I have more details.  The good news is JW does NOT have RSV!!  Praise God!!  As always, please continue praying for our little guy.  Right now he is in need of some major healing.  Allie and the rest of us are in need of strength and comfort as it seems as of late, it has just been one thing after another.  No rest for the weary, right?  We have felt your prayers from the beginning and they have certainly provided the strength, comfort, peace, and healing you intended them to...and so much more.  So, please continue to lift JW and our family up.  We pray the Lord blesses each of you and your families as you have been blessings to us.  Oh, and some BIG thank yous...to Mrs. Burks for those YUMMY enchiladas (they were like a little piece of Heaven on Earth!!!), to Mrs. Bonner for saving us from having to cook on a very crazy night, and a special thank you to Connie for helping out in the midst of all the chaos.  You ladies love us so well, we couldn't make it without the gracious help of people like yourselves!  Until tomorrow.

Lindy

Did I Speak Too Soon?

Well, I just got off the phone with mom and recognizing the sound of highway noise in the background, I asked where she was headed.  With a slight chuckle, she replied, "Well, we are in Uvalde."  She continued on telling me that last night around 9:30 JW began running a slight fever.  Allie called the dr. and he told her to give him a little Tylenol and continue monitoring his temp. every hour.  It stayed close to 100.9 throughout the night and finally around 5am they headed to the ER.  After some x-rays and bloodwork, it was decided that JW should be started on antibiotics to treat a possible mild infection.  As of 11:30am, they were on their way home.  Not too eventful, thank goodness.  Please continue lifting our little guy up in prayer.  Though it may seem momentarily as if he is out of the woods, you just never know with these little ones when something else could suddenly pop up.  Thank you for being so fervent in your prayers.  God Bless!

Lindy

All Is Well At The Moment

JW, Allie, and Mom have been home for a few days now and everyone is doing well.  JW has been sleeping A LOT, and we are hoping that means the reflux meds are doing their job and providing our little guy with some relief.  He has been sleeping so soundly that sometimes he barely wakes up even when Allie bathes him!  I would imagine he was just exhausted after those 3 days with little to no sleep.  Allie and Mom are also rested and feeling better.  A BIG THANK YOU to all our wonderful brothers and sisters at the Church of Christ for helping out with food, cleaning up around the house while Mom and Allie were gone, and for your encouragement and support...well, mainly for taking care of Dad while everyone was away!!  We love you all very much!  Also, thank you to everyone who has faithfully lifted JW, Allie, Wacy, the kids, and our family up to the Lord in prayer.  Your prayers have been heard and we have certainly felt them!  At the moment, things are calm in the Taylor/LaMascus household and we are hoping it will stay that way.  JW went to see Dr. Lutton yesterday and he weighed in at 8lbs. 13 oz.!!  He has gained almost a pound in the past week!  Dr. Lutton said everything looked good, praise God!  Allie also got a call from ECI and they will hopefully be sending a nurse over in the next couple of weeks to help with JW, possibly up to about 40 hours per week!!!  That will be such a blessing and will offer Mom and Allie a chance to get some real rest and a reprieve from JW's tedious, round-the-clock schedule.  On another note, a physical therapist should be coming over starting next week to do therapy with JW!  One more much needed thing taken care of, hopefully!  Thank you again for your prayers, they have passed much strength on to us and to JW.  Please continue to remember him and our family.

Lindy

Botox Baby!

Here is the photo I promised.  Mom took this with her phone while JW was in the hospital.  His arms are almost fully extended AND he is SLEEPING!  I will have to get Allie to tell me more about the Botox (how often he will get the injections, where exactly they do it, and what the effects are supposed to be) and then I will report back.  I talked to Allie around noon and the new monitor, which was supposed to arrive at the hospital at 9am, still wasn't there yet.  They are supposed to come home today.  Pray for them to be granted safe travel and that JW will be comfortable on the way home.  Will update again soon.

Lindy

Finally...

So we have some good news and some ok news.  We finally have some answers about what has been upsetting JW and possibly causing some of his sleepless nights.  The "ok" news is that the doctors believe JW has reflux.  Not so great, but good that we can get to work on fixing it!  He has been started on 2 medications for this and Allie says he has already been resting better in the hospital.  Yay for that!  The good news is that they have pretty much determined the cause of JW's episodes...his monitor!  Yesterday he had two episodes, one at 4pm and one sometime in the middle of the night.  Both times, he was hooked up to his home monitor AND the hospital monitor.  During the episodes the hospital monitor showed he was fine and his home monitor showed his heart rate plummet!  After the 4pm episode they put a brand new probe on his home monitor, but it still did the same old thing when JW had the mid-night episode.  This is what led them to determine the whole issue stemmed from the monitor.  So, a new one is in route and hopefully this next one will work correctly and give Allie along with the rest of us some real peace of mind.  Also, mom sent me a photo via cell phone from his second day in the hospital and JW's arms were almost straight down by his sides!!!  The botox is definitely working and helping his little muscles to relax and stretch out.  I will try to email it to myself and upload it so you can all see the BIG difference.  We are expecting JW to be released tomorrow, but that is subject to change, of course.  We still aren't sure about what is upsetting JW so much to bring on his episodes of crying...where we cannot calm him down in the slightest.  It could be the reflux, could be his hips, we just don't know at this point.  So, please keep praying that whatever is bothering him will be revealed to Allie, us, the doctors, someone...or that whatever it is will just go away.  Thank you for all your phone calls, emails, help, encouragement, support, and most of all your love.  We need each one of you more than ever and we are so glad that you have been so willing to share in all of this with us.  I know it means so much to all of us, especially Allie.  My prayer is that JW's experience thus far in this world and all the hardship our family has faced will not be in vain but that each one of us will be a testament to the faithfulness of our Lord...His power, His love for all of us, and that all we do will bring immense glory to God alone.  God's purpose and plan, particularly for JW's life, is SO much bigger than what any of us can ever possibly imagine.  I am so thankful that He is in control and has been with us EVERY step of the way, before and since JW entered this world.  God purposed JW's life even before he was created in the womb.  I know we are blessed to have been chosen to be JW's family.  Allie, God chose you!  He chose us!  He loves you and JW more than you can imagine and HE IS WITH YOU.  Remember these things: "Be strong and courageous.  Do not be afraid or terrified because of them, for the Lord your God goes with you; he will never leave you nor forsake you."  Deuteronomy 31:6;  "As I was with Moses, so I will be with you; I will never leave or forsake you."  Joshua 1:5;   "'For I know the plans I have for you', declares the Lord, 'plans to prosper you and not to harm you, plans to give you hope and a future.  Then you will call upon me and come and pray to me, and I will listen to you.  You will seek me and find me when you seek me with all your heart.'"  Jeremiah 29:11-13.  The wonderful thing is that you can rest in knowing that God is in control, His perfect plan and timing is at work in you, JW, and our family.  May you feel the peace, comfort, and love He has to offer you.  And may He help me and the rest of our family to love you, help you, comfort you, and strengthen your spirit when and how you need it.  Praise Him for the miracle of JW's life and how well he is doing!  May he continue to bless JW and heal him in every way.  I love you and JW with all my heart and I am here for you both to the end of my days!  Love, Lindy

Hoping not much news=good news

So I talked to Mom and Allie about an hour ago and they were on their way home to Brackettville.  JW is still in the hospital in SA.  The EKG showed nothing wrong, so they still aren't sure what's causing the episodes or his being so upset at times.  Some possibilities are reflux, thyroid issues, his hips, and a few others I can't seem to remember.  Allie and Mom will be heading back to SA tomorrow and we hope to know more at that time.  Thank you for your prayers and kind comments, phone calls, and emails.  All of you are providing us with such strength and encouragement throughout everything.  If you want to send Allie an encouraging word (and she could probably use one about now), you can leave a comment here or email her at allie_78@hotmail.com.  I will update again tomorrow as soon as I hear something.  

~Lindy

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.