Sunday, December 6, 2009
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.
Friday, November 27, 2009
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.
Monday, November 23, 2009
Saturday, November 21, 2009
Thursday, November 19, 2009
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.
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.
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.
Monday, September 21, 2009
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!
Wednesday, September 16, 2009
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: firstname.lastname@example.org.
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.
Monday, September 14, 2009
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 email@example.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
Monday, July 20, 2009
Tuesday, May 5, 2009
Monday, April 20, 2009
Thursday, April 2, 2009
Thursday, March 19, 2009
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!
Tuesday, March 17, 2009
Saturday, March 7, 2009
Tuesday, March 3, 2009
Saturday, February 28, 2009
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,