Welcome to our CaringBridge site. We've created it to keep friends and family updated. We appreciate your support and words of hope and encouragement during this time when it matters most.
Josh was born on August 23, 2004 8 weeks early weighing only 2lbs 14oz. He did great in the NICU, only needed to feed and grow. At 1 month old our precious bundle of joy was able to go home with us weighing 4lbs 4oz. Although Josh was small, things continued well until his 3yr check-up where the doctor noticed that he was falling off his growth curve. Honestly, Josh hasn't grown much at all since then. We have been followed by Endocrinology since then but have not started using growth hormone yet. At Josh's 4yr check-up the doctor noticed that his white count was low. It was re-checked over a couple of weeks and continued to remain low although he showed no sign of illness. At that point we were referred to Hematology-St. Jude clinic in JC. For two years Josh's blood has been tested monthly for almost every immune disorder imaginable and has undergone 2 bone marrow biopsy's with still no definite diagnosis. All the doctors we have seen continue to say Josh is a mystery but they are all continuing to work diligently to find a reason for his weakened immune system. Despite how ugly Josh's labs have looked for 2 years and his obvious growth disorder, he has been a happy, fun loving, playful little boy who will make your sides hurt with his hysterical since of humor. In August 2010 it seemed like we went to sleep and haven't woke up from a horrible nightmare. On Aug. 13 we went to the St. Jude clinic in JC because Josh was swelling and having trouble breathing. After a urine check the doctor told me they had called a kidney specialist because Josh had a high amount of protein in his urine. I remember how scary that day was not really understanding what was happening to our little boy. This is when I met Dr. Wattad, a kidney specialist. He diagnosed Josh with Nephrotic Syndrome-a kidney disease where his kidney's are functioning normally except they are spilling all the protein into his urine. So much that he looses all the protein in his blood and that is when he begins to swell. Josh was given Albumin transfusions to replace the protein in his blood and lasiks to pee out the swelling. We went home on Sunday, Aug 15 on 7 new medications, one being Prednisone. This drug is used for 4 weeks to see if it will stop the kidney from spilling the protein. So far it has not worked. We were re-admitted to the hospital on Aug. 25 for more albumin and lasiks for swelling but this time Josh did not respond to treatment. Dr. Wattad told us that in 25 years he had never seen a patient not respond so he contacted Dr. Hunley at Vanderbilt for assistance. We were transported to Vanderbilt on September 7 and have had very aggressive treatment here. The swelling is much better here. The prednisone has caused his face to swell and his tummy is still swollen but we have improved for sure. Josh is scheduled for a kidney biopsy/bone marrow biopsy on Monday, Sept. 13 which will tell the doctors what type of Nephrotic Syndrome Josh has and what treatment he will need in the future. Please continue to pray for our sweet little boy and for wisdom for the doctors to be able to diagnose and treat this disease. We know our God is in control and we lean on Him daily and the prayers and support we receive from you. We are already thanking Him for the good results we will receive from these biopsy's and we ask that you do the same.
Update: Josh has been diagnosed with Schimke Immune-Osseous Dysplasia-an extremely rare form of dwarfism resulting in short stature, kidney failure, bone marrow failure, seizures, strokes and a shortened life expectancy. Thank you for praying for our family and for Josh.
Josh gained his angel wings on 5/9/2013, surrounded by his family at Monroe Carrell Jr Children's Hospital. Please continue to pray for our family as we continue this journey in life without our precious little man. "Stay on the Wall" Neh 4:20
Happy New Year!
Jan 1, 2014 5:10pmHappy New Year to all our friends and family and to our sweet Josh in heaven. 2013 has been a year of unbelievable heartache. This song is my heart's vision for 2014 and moving forward.
Some posts since our puppet show that I forgot to add on here!!!
Merry Christmas in heaven sweet Josh. So many emotions our hearts have felt today...beautiful memories of Christmas past and the piercing heartache of the reality that you are no longer here to celebrate with us. Visiting you in the cemetery today was one of the hardest things I have ever done. I have tried all day to find words but to only come to one conclusion...this kind of pain is indescribable. But I must share that I truly have felt God working in my heart leading up to today. A few weeks ago, I couldn't think of Christmas without feeling sick, but God has been revealing to me that the things I missed the most about today and had all my focus on, truly wasn't what today was about. Without Christmas...all Hope would be gone for our family. If our Savior had not been born this Christmas Day, then when we stood by your hospital bed and watched you take your last breath here on earth with us, that would have been it. Death would have won and we would have been separated from you forever. Just typing that brings me more pain than I can hardly bare. But because of Christmas...Jesus's birthday...we have marvelous Hope. This pain we feel is only temporary and your pain is no more. So yes, I cried tears of of missing you today, but I also celebrated and thanked God for sending Jesus, to be born of a virgin, the Messiah, Lord of Lord's and King of King's, Emmanuel. Because of Him, I can still live in peace knowing that you are alive and well with Jesus. Without that Hope, death would be unbearable. I am truly thankful for 9/7/2012, the night you prayed with Mr. Will, Daddy and Poppie and asked Jesus to be your Savior, as Daddy, Jake and myself have all done. This gives us blessed assurance that our family will be re-united again in heaven for eternity. I can't imagine living in this pain without that assurance. I must also say that God promised to be our comfort and He has. This isn't easy...He doesn't say life will be easy...but that He will be right beside us always...and He is. So as we prayed today, I prayed you were having your best Christmas ever little man and that Jesus would give you the biggest hug from us and tell you how much we still love you and how very much we miss you. We still bought everyone in the family gifts from you...even tricked Jake...like you always had fun doing. It made him smile!!! I will never forget you taking your $100 you saved up and picking out gifts from your heart for each family member. You had such a big heart and with so much love to give...just like Jesus. So as we opened gifts today, I was reminded of the best gift any of us ever received, what today is truly about, Jesus...The gift that fits every heart perfectly!!!
Christmas Donations to Hospitals
Thanks to each of you who helped in any way with our Christmas fundraiser for hospitalized children and their families. The last couple of weeks have been such a blessing for us. We began our donations with the St.Jude clinic in JC. This was our first visit back to the clinic without our sweet boy and was very emotional. They are not only our friends but our family and we have missed them so much. Hearing them share sweet memories of Josh did so much good for our hearts.
We traveled to Nashville last Friday, the 13th, we had a lot of emotions flowing for sure going back where we we spent our last moments with Josh. We arrived at lunch time to meet with some of the nurses that took care of Josh while we were there, and were tickled to see seven nurses there to eat with us. These nurses are also like family to us and we had such a great time with each of them. As we sat and talked, it became even more clear how special they are to us. We sat and talked and shared story after story.
You simply cannot know how good that was for us to share that time with you all. Words can not explain it. After eating lunch, we went to Vanderbilt and visited nurses and doctors in the PICU that were working and shared stories with them as well about our time living together with them in the hospital.
After loving on the folks in PICU we met with Josh's kidney team that took care of us for so long as well. To the entire staff there, words cannot express our love for you!
We also visited the Niswonger Children's hospital here today and met with our family of folks there too. It was so good to hug your necks and meet new staff that has joined and to learn that they knew so much about Josh from stories from those who cared for him have shared. You all are very special to us as well and we love you all so much.
That leads me to this. We enjoyed hearing these beautifil stories so much. Honestly, it was good therapy for us to know our precious little man is not forgotten. Maybe you had an interaction with Josh, or Jake, at some point or were touched by them to some extent. If that is the case, and you don't mind, please comment to this post and share that with us. We would love to hear those stories.
Terry, Tammy, and Jake
Happy Thanksgiving in heaven little man. We sure do miss you. We started a new tradition this year. We decorated a live Christmas tree in the front yard that a sweet friend planted for us in memory of you. All red of course...your favorite color! We also lit candles for you and Phil at the dinner table. Our lives are forever changed but you are always in our hearts. We love you sweet boy. I hope you enjoyed turkey with ketchup and apple sparkler with Jesus today and that your little tree makes you smile!
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