Summer wrap up

Ok, it's been a long break, again, from the blog. I can always count on my dear friend, Carole Lewis, for the 'push' to keep writing. I doubt many people even check our blog anymore with how inconsistent I am in updating. I will admit that even thought I am not consistent, I enjoy writing about my thoughts, feelings, and happenings...it really is therapeutic.

Back to Carole. Carole and Johnny Lewis were our wonderful neighbors when we lived at the bay. Carole is the national director for First Place 4 Health AND and best selling author. Johnny is her dear husband who is an inspiration to all. They are special people that God placed in Greg and I's path and our lives were changed for the better after knowing them. Carole has written MANY books. I have had the pleasure of reading a few of them( The Mother Daughter Legacy, Give God a Year, Change Your Life Forever, and her most recent, Better Together, a devotional). (I would add a link here, but I am not that smart, so you will have to trust me and look them up on your own! DO IT, you won't regret it.)

I feel extremely honored to have had the opportunity to be a part of her most recent book, Better Together! Yes, you read that correctly. I (with the help of my loving husband) got to share a devotional based on our story of Luke and what God has taught (is still teaching) us through our little boy. I am no sales girl, but you won't be sorry for checking out this book! Each devotional is short - a one page writing with a scripture, prayer, and action point. Thank you Carole for allowing us to be a part of your tremendous work. I feel incredibly honored.

Now on to an update on what the Jones family has been up to. We have been doing A LOT of staying indoors. August has been Luke's worst month so far. His face, legs, tummy, and under arms are looking rough and I can't even describe in words is poor little feet. No one, myself included, can't imagine how much pain they cause him...or any person living with EB for that matter. He now knows how to express when he is in pain. It helps me know; however, saddens me more. His walking is still off an on...sometimes he walks most of the day, sometimes part of the day, and sometimes none of the day. I keep wondering if he will live like this forever. I'm sure I know the answer, and it is sickening. Ok, enough of being Debbie Downer. Those are just details. All in all Luke is doing fantastic. He takes on this EB with everything he has! It's Greg and I that need some toughening up! :)

Some indoor activities we have done include many trips to play at McDonalds. The McDonalds closest to our house has a "toddler" play area that Luke loves! Now, I know this is probably not the best place to take your child; however, it is seriously the only place Luke will actually play. It warms my heart to watch him too. I usually take him home and bathe him immediately...no I am not a crazy germ nazi...but let's face it, there are A TON of places that germs can get in him and I am trying to keep our 2- infections- so -far- streak going! We have gone to the play castle a couple of time too; however, it is always so busy that Luke gets a bit overwhelmed. Once school starts up it should be better. He rode the train at the mall for the first time last week and loved it. Lindsay took some pics. I will post soon. We took him to see the circus a few weeks ago. He loved it! I hope to be able to take him next year too. He and I went to visit my parents for a few days while Greg was traveling for work. We had a great time with Kippy and Pappy. Luke loves them so much! `We also have been to 3 birthday parties that were all a blast!

James Thomas and Luke having fun at the play castle at the mall...blurry because they don't stop when together....they are in love

so thirsty from chasing JT

The older Luke gets the more I am seeing what his little personality is like. He is very sensitive. He likes routine and familiarity. He doesn't like huge crowds. He loves musical toys, books, and puzzles. He loves PBS shows. (too much, maybe) He loves to be physically loved on..kisses, hugs, tickles, snuggles. He loves to be read to, held, and ROCKED. He loves his play room upstairs. He does not love to do any kind of mobility - crawling or walking - on hard surfaces. I don't blame him here. Although sometimes I get frustrated and wish he would be a bit more adventurous or take a bump or fall a little "tougher," he is who God made him and that is wonderful.

Greg, Luke and I went and had dinner in City Centre one night. Afterwards, we all got ice cream at Red Mango and let Luke play on the green. There was actually a breeze and the fake grass was pretty cushioned. He loved it and so did Greg and I. We took lots of pics of his carefree happiness!


whining because we were leaving
This past Saturday he went to "school" for the day. It is a Parent's Day Out hosted by the church. Our favorite teacher and babysitter was in his room for the day. He got to play with friends, eat pizza, and nap all while Greg and I went to breakfast with the Garretts, saw a mid day movie, went for ice cream, and did a little shop-looking! I am so thankful for Luke's caretakers and for mommy and daddy time!

I can't believe he will be TWO on September 6. What a wonderful journey the past 2 years have been!


this was taken on the last day of Summer MDO with his teachers he had from September -July. Mrs. Mojgan, Luke, and Mrs. Jennifer - AMAZING people...so so sad to move to another room next year.


I just realized I take way too many pictures with my phone. These are from my camera...I will do better!