so much to say...

It has been crazy here on Rincon Dr. I did not have a computer in the hospital, therefore, no updates on the blog!

Before I begin updating the life of the Jones family, I have to write about our very best friends. Most of you know about sweet James Thomas Garrett and all that he, Lindsay, and James are going through. Please pray for them. Lift them up in every way...especially tomorrow morning as JT will be undergoing a procedure to test his bone marrow. PRAY FRIENDS...for the doctors, for PEACE and COMFORT for Lindsay and James, for no pain for little James Thomas, for a positive and hopeful outcome, that James Thomas IS making red blood cells on his own, and that the whole experience goes smoothly. My heart physically aches for them. The days after finding about Luke's disease, I remember telling Greg that I hope no one I know has to experience these feelings. Who would have thought our best friends...who we have endured so much together already, would have to go through a similar situation. WHY WHY WHY!? Lindsay said it best..."it makes me believe in God more!" I completely agree. He is doing something...something surely to be SO BIG. Sweet James Thomas and Luke already have so much in common and they have NO idea! We love JT so much.

It has been so long since my last post...I will try to be brief in the details of the past couple of weeks...Luke was admitted to Texas Children's last Friday for 'Failure to Thrive.' He was not eating well and not gaining weight. Not gaining can be related to his EB. There can be internal blistering on his organs. They did an upper GI test and it did not show any restrictors in his esophagus (praise #1) but did show severe reflux. We have been on reflux meds but realized Luke needed a much higher does. He also saw an ear, nose, and throat doctor who stuck a camera down his throat to look at his voice box. It is pretty irritated but nothing serious was found there either. (praise #2) After much discussion, our GI and ENT doctors wanted to do a procedure under anesthesia...sticking a scope in both ends to see his airways and his organs looking for any type of restrictors and blistering. This can be a very risky procedure as he could blister all the way down from the scope. Lots of details later, our GI doc. talked with our dermatologist to confirm the risks related to his EB. Ultimately Greg and I had to make the final decision, so we decided NOT to go through with it yet. We wanted to bring him home and see if he can thrive on his own. He is currently on a higher calorie formula and a higher dose of reflux medication. We go to the pedi frequently for weight checks. As of now, Luke is gaining and eating a little bit better (praise #3). We have follow ups scheduled with our team of doctors at Texas Children's to monitor his condition. It is not uncommon for EB patients to have eating issues. Many people battling this disease will go on and off feeding tubes throughout their life. We just want to wait as long as possible before we go inside and look! He is so little!

I continue to be in awe of Greg. I can't lie...it has been stressful around here. He has done an amazing job at balancing work, me, and a sick baby. He continues to help me so much. He embraces me when I cry and is forgiving when I mess up. Thank you my love. You are more than I imagined in a husband.

I continue to feel overwhelmed with the wonderful group of friends and family we are surrounded by. I apologize to so many who I have yet to get back to. I promise I will. NOTHING has gone unnoticed. Thank you to all who have come and helped, brought dinner, brought a gift, called, texted, emailed, and facebooked! We could not get through this without you. NOT AT ALL!

Here are a few pics from our time at Texas Children's and the last week or so... A special thanks to Lindsay who is great at capturing moments. I brought my camera but I rarely use it, so I think most of the hospital pics were taken by her! UPDATE..pics won't upload...I will try again tomorrow.