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!
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