Not a moment to spare.....

Once again, my apologies for not writting sooner. There has literally not been a moment to spare to come to the media room and write. I'm sure we will get back to much more normal updates and reflections once we are back home and we have our own life and schedule back. The biggest news to report is this.......We have an actual discharge date.......Drum roll please.......Monday, June 19th we are officially heading HOME!!!!! It's hard to believe that after this long we will actually get to leave the hospital as a "whole" family in more ways than one!!! Little bug is doing so good!!! He continues to gain weight, some days less than others, but for 9 days straight it has been a upward gain with no losses!! We are so proud of him and he is working so hard to get strong. We are realizing that Connor has quite a personality now that he is feeling better. He talks to us and coo's all the time. He is very aware of his "bug" surroudings and he loves to look at everything!!! On Friday we had an assessment called "The Bailey" done on Connor and he scored quite well. For being in the hospital for 80% of his life he is only about 1 month behind cognitively and about 2 1/2 months behind with motor skills. We are so confident by the leaps and strides he makes daily that he will be up to speed in no time. We really hadn't anticipated him doing as well on this assessment as he did, shame on us for underestimating him. He has declared himself a fighter and I think we are going to start calling him "The come back kid" or should I say bug?!!

We are still dealing with some GI concerns as far as bloody stooling and the like. At the moment, the docs are fairly convinced that it is still some kind of fischer on the inside of his little bottom that keeps getting irritated from all the pooping this kid does. Maybe once we settle down on the aggressive volume and calorie increases of his feeds, he will settle out into a more normal pattern of using his bowels.

The past 4-5 days have been very busy with exit procedures and making sure that we have all our t's crossed and i's dotted. There have been lots of consultations and lots of visits to say goodbye. Today, in fact, our hospital buddy Skylar, affectionately known to us as "Big Bug" is going home at 11am. Way to go Big Bug. We can't wait to come and see you at your house and meet your dog Bailey. So many of our other pals are getting close to homecomings as well. Baby Katie is dealing with some throwing up issues, but her heart transplant is doing excellent and her family can't wait to go home. Little Brent has come back to the hospital for a two week stay as he is fighting more low counts and preparing for his last session of Chemo. We are praying constantly that God protects this little guy and that he surprises all his doctors as he progresses and heals. Some of our newer friends Allanah, Mamalah and Jackson are also closer to home. We need to keep praying for Allanah to stay off C-pap so she can be moved out of ICU and to the floor. Once she gets on the floor, home will only be a couple of days away. We're fighting for you little cutie pie!!! Oh, remember us talking about our little roommate Sarah? Well, she is growing too and doing better. They hope that she can be released from ICU soon!!! We must continue to battle for little Jonah!!! He needs our constant prayers for strength for every system in his body. The last I know, he is still on the life support systems and his parents are praying for a miracle. Dave and Stephani are great parents and they are incredibly committed to their little guy. We will not stop praying until we see the hand of God move with healing over his body!!!

Today is going to be a pack up day. We are planning to get things all boxed up and loaded up in the truck so we won't have to do it on Father's Day or on our discharge day. I must say, my mind is filled with a myriad of reflections as we actually prepare to leave. In the coming days, I'm sure that there will be many heartfelt entries on how this affecting me. Right now though, I'm all about business. Share the facts, post some pictures, love on my boys and pack up and head for home. We are forever blessed to have been sharing our whole experience with, literally, the world!! Your love, support, kindness, boldness and strength have been a rock to us. We plan onl continue posting and keeping up this blog for a long time. We feel that all of our blogging family as become a significant part of us and we want you to keep up with us on Little Bugs journey of life. We want you to watch him get fat and prepare for heart surgery. We want you to rejoice with us in his victories and pray with us in our struggles. We want you to to be the first to know of his milestones and of his eventual successful heart surgery. We want you to see him roll over, crawl, walk, talk, run and do all the wonderful things he is going to do. He is going to amaze us. You just watch, we are convinced that he is going to blow all of our minds!!!

All of that said, keep up the prayers, keep visiting and we will be faithful to continue to share Connor's testimony of life and our testimony of faith in the Lord. We are grateful to not be walking alone. With Christ at our side, He will be faithful to uphold us every little step of the way!!

Lovebug Hugs,
Lori

PS ~ If you wouldn't mind, I have a couple of things that weigh extra heavy on my mind the past few weeks that need prayer. We continue to battle for the healing of our dearest friend Pastor Doug Trentham. He needs a miracle from God in his body. Also, my Grandma is not doing well. She has failed a great deal in recent weeks and was in the hospital for a few days with a UTI and now she is so weak, she can hardly eat. When my mom goes to see her she encourages her to eat and get strong because she has yet to meet Little Bug. Connor is her 4th Great Grandchild and we really look forward to them meeting. Please pray for her strength!!
Thank you from the bottom of my heart.