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