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