3rd post in one month!!

We had a perfect weekend. On Friday night, I cooked dinner and we rented the movie 50/50, popped popcorn, and we were still in bed by 10. :)

We went to our friend, Grace's, third birthday party at Wonderwild early Saturday morning. I am pretty sure Luke and Greg enjoyed it equally. :)





Precious James
pretty Kenzie
Cute Henry
Jumping JT

After nap, we went to the park and soaked up the beautiful (California-like) weather. Greg and Luke also played a little golf in the front yard. Luke is REALLY into his golf clubs (folf cwubs) right now. Greg can't wait for him to really be able to go golfing together! We ended the day with a delicious meal out to eat followed by ice cream. A yummy treat!






It was PJ's and pop tarts at church on Sunday morning for the little ones. I decided to stay and help out in Luke's class and BOY WAS THAT A MISTAKE! He cried just about the entire time with me there! He sometimes cries at drop off but is fine within seconds of me leaving. He was playing on the playground happy as could be and when he saw that I was there to STAY, he lost it. WHAT?!? So weird. Anyway, Greg 'talked' to him about it on our way home. :) The littles in their jammies were too cute!
Ready for church!


Sunday evening we had the Garretts over for burgers and fries! It was a great ending to our weekend. James Thomas and Luke loved taking a bath together after dinner and James Thomas thought it was funny to wear Luke's PJ's! Silly boys.




Still trying to do better at reflecting on being thankful. I have been getting asked more and more about what the future looks like as far as expanding our family. Greg and I talk a lot about it too! Well, it's not exactly black or white for us (and so many others who desire a family), unfortunately. Yes, we would love another baby someday but it is a little complicated with all the genetic factors that now play a role after having a baby with EB. I am thankful for the way things are and feel like when, if, and how we are to add another, God will give us clear guidance with the decision. For now, however, we are soaking up the little days with Luke and enjoying life as it has been given to us.

great week

Week two of consistent blogging. Can you believe it?

I am loving the new year for a lot of reasons, one being we have had NOTHING to do on the weekends except spend great family time together! This past Friday night, Greg and I had Mojgan come and babysit so we could have an evening together. We went and enjoyed a delish sushi dinner and a relaxing, (last minute decision) couples massage. It was wonderful and such a treat. I love him so much and am grateful for the husband and daddy he is.

Saturday morning was also a fun treat. Our neighborhood has an annual "snow day" at the neighborhood club/park area. This was our first time to attend and it was so much fun. Snow is trucked in and dumped on a little hill in the park. There are lots of sleds and other toys to play with. I forgot my camera. (BUMMER) Luke was not very interested in actually playing in the snow. He wanted to spend his time swinging, sliding, playing with friends, and eating donuts! There were TONS of yummy donuts and coffee set up. I was so proud that he wanted to go down the hill on the sled with Greg! They did it, and he LOVED it. Lindsay has it on video. I will post later. Greg ended the morning with a snow ball fight with other dads! We ended the day grilling out at home and Greg and I finally watched The Help before bed. GREAT movie...exactly like the book!






Earlier in the week, I took Luke to Chuck E Cheese to play with a few friends from Sunday school. It was a great morning!






Thursday night I hosted neighborhood Bunco (which has now turned into more of a summer club because we never actually play the game...just have dinner!) It has been a great way to really get to know other mom's in the 'hood.

That is about it for our week. Not too exciting, I realize, but fun nonetheless. I am almost finished reading 'A Thankful Heart.' There is so much to be grateful for...one thing I have learned to begin practicing more is when you are in the middle of a frustrating, angry, jealous, overwhelmed, etc moment try to find a positive within the situation and thank God for whatever it may be. It can be something extremely simple or more complex, but there is ALWAYS something. This morning, in fact, I tried to explain a simple act of being thankful to Luke. It was POURING rain. ( MEGA STORM ) and we have a garage to pull into and a breezeway to the back door. We practiced telling Jesus thank you for a garage and for keeping us dry. Simple but good I think.

Please continue to pray for Tripp's mommy, Courtney, along with the other family members as they grieve the loss of their sweet baby boy.

a new year

brace yourself for a long, scattered post...

I don't typically do "resolutions." They bring too much pressure! :) I like to set a few attainable goals for the new year. One being more consistent blogging...even if they are short little 'blurbs.' I started getting sad thinking that I am not doing a good job documenting Luke's little days. I have already started taking more pictures! That is a start!

We closed out 2011 on a great note! Fall was good to us, we had a wonderful Christmas in Longview with family, and rang in the new year in New Orleans while Luke toasted his milk with his Kippy and Pappy in Longview. Greg and I are thankful that he loves his grandparents so much. He has so much fun with them. Mom said he is happy the entire time, never cries, and sleeps like a champ! All of those things make a mama feel good being away. A special THANK YOU to my sister, Anna (aka Auntie) for driving to Longview for a night to help with Luke's wound care. It's not a fun thing to do for anyone involved. Greg and I are thankful to have the time away especially knowing Luke is being cared for.....not by just an Auntie...an 'almost' nurse practitioner AND MOMMY! Yep! Luke will have a little cousin come March when baby Sutton arrives! We are all so excited to welcome a new baby boy to the family!










New Orleans







Luke is at such a fun age. He is 2 years 4 months. He talks our ears off and is learning new things every day. I am really trying hard to not take any of these days for granted with him. I have been feeling extra thankful lately. God is good to us. ( another "goal" for the year...offer up more thanks and complain less) I am currently re-reading Carole Lewis' book, 'A Thankful Heart.' A great, short read that reminds me to find contentment in EVERY situation...both the bad and good. Here are a few things we are thankful for today:

- Luke has been wearing REAL shoes!! Can you believe it?!? Greg and I were just saying yesterday, as we are watching Luke play at the park, that we weren't sure we would ever see this...playing at the park AND in tennis shoes! It sounds so simple, yet brings us joy! (it actually kind of makes me teary when I really think about what all he is doing) He doesn't give up.

- A sensitive soul. Luke has one. Greg has one. They are both very loving, very affectionate, very snuggly, and kind. Greg might be embarrassed when he reads this but it's true and I am grateful. It doesn't take much to "correct" Luke. He gets his feelings hurt VERY easily. Sometimes it's cute, other times it's not. :)

- Health. I was thinking the other day about how great it is that we have not spent much time at the doctor. I don't take this for granted. I am actually very surprised. I wonder if we can make it from his 2 year check up to his 3 year check up with no sick visits?? 8 months to go!

- Greg. He is wonderful. I love how he takes pride in our home...always wanting to have a -do it yourself- project to make something better. I love how he loves his family. I love our quality time. I just love him.

- my everyday life. our family. wonderful group of friends. Tuesday morning Bible study. my list could go on and on. It's good to focus on what we are thankful for. God likes it too!








Tiny Tots and Tunes (an 8 week music class at church) starts again next Friday! Luke is a music lover and now that he can fully participate he loves going! (and so do I) We have a lot of friends that also go so it's fun to all go have lunch afterwards! We look forward to Fridays!

Please say an extra prayer for Tripp's mommy and family. He went to be with Jesus on Saturday. He suffered from Junctional EB. You can follow his story here www.randycourtneytripproth.blogspot.com ( I don't know how to link...but their blog is also on my sidebar 'EBing a Mommy'

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!