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!

All about Luke - with PICTURES!

Long post ahead with lots of randomness...

These are back from Easter! :)
I got the shoes on him for a cute snap of the camera!

Oh my sweet Luke. I am starting this post (I won't finish) as I sit here in the waiting room at Texas Children's PT clinic. It's pretty humbling, to say the least. I know for sure I need to be humbled from time to time. A lot, actually. Seeing some of these precious children endure what they do, is definitely humbling. I just witnessed a little girl, probably about 4 years old, attempt to peddle a tricycle with a huge distended abdomen, tubes coming from her nose and mouth taped down to her face, and abnormal limbs. She is riding along the hallways with such JOY! Laughter even. Pure innocence. Gosh, to have JOY in ALL CIRCUMSTANCES. Isn't that what we are called to do? "Be joyful always. Pray continually. For this is God's will for you in Christ Jesus." I Thess. 5: 16-18 It's a hard thing to do sometimes. Just something to think about.... :)

I have lost count at how many sessions he has been to, but he WALKED out of PT HAPPY today! This is a huge accomplishment! He has cried (the sobbing, non stop kind) the second we arrive throughout the entire hour every time he has been, so for today, we are thankful! His sweet therapist, Kristen was so proud of him. She said he cried off and on but did way better. I hope next week is good too.

We have been BUSY! Luke started the Summer session for Mother's Day Out. For the month of June is has been going 2 days a week! July he will go back to 1 day a week and then for the new school year go back to 2 days. It has been great for both of us! :) He is still with the same teachers from the school year who are wonderful. WONDERFUL! I could write an entire post just about a special teacher. ( maybe another time :))

The first week in June, we had the opportunity to go visit Greg's side of the family...his mom, Billy, Diane, Steve, Devin, and Kelsey. We flew into Virginia (where they all live) and Diane, Greg's sister, picked us up and we drove to North Carolina to the Outer Banks....Corolla Beach. We had a beautiful house on the beach where we spent 7 nights! It was so great to spend time with everyone who we don't get to see nearly enough. Luke DID AMAZING. I honestly don't think he cried one time the entire trip (except a minor fall off the couch and bumping of his head...ouch!) and hardly whined at all. He immediately took to everyone and loved spending time with his Grandma "Mi-Ma" and "Papa." I had taken Luke to his dermatologist the week before we left for a check up and to discuss the beach. She was a bit hesitant about him being in the sand...he has a lot of wounds for sand to get trapped in. Well, there was no way we could travel that far and not let him experience the beach a little...so we did, twice! (with an immediate bath afterward) He LOVED playing in the sand and loved 'looking' at the water. As he gets older, we might have to find a different kind of vacation for him to enjoy, but for his 21 month self, the beach was great!
WILD horses ON the beach! Luke was in love...











on the way from the airport to the beach! still happy!





the result of the fall off the couch





Some other random things...Luke is starting to talk a lot more which Greg and I think is the cutest. He is QUITE the snuggler/hugger/kisser. He actually embraces when he gives a hug and will hold you tightly. I don't want him to ever stop giving me those. EVER. Greg and I were just talking this morning that we are ok with him not being the expert walker (right now). He is pretty cute to watch toddle around....which is exactly what he does...toddle. As long as he doesn't sit and hold his feet in pain and seems happy doing it...it's fine for now. I am, of course, excited for him to advance and get better, but it is what it is so we will embrace who Luke is and what he can do right now in his little life! We are trying to come up with a new table idea for his blister draining/wound care routine. His changing table is not working out that great anymore. He is getting way too strong and the pad thing slides but we can't do it on the floor because I need the bright light. Hmmm....



We don't have too much more planned to the rest of the Summer. We are REALLY looking forward to the newest residents in our neighborhood. Here's a hint...one of them is 2 years old and happens to be Luke's BFF. His initials are JTG!!!!!!!! yes, God is REAL.

guess what?!?!....

at 19 and a half months, Luke is walking! We are so happy and thankful. He doesn't walk everyday (depends on the blistering on his feet), but we are grateful for the ones that he does toddle around! It is too cute. We have only been to PT 3 times and 2 of the 3 have been not so great. (meaning, we got nothing accomplished because Luke wanted to be held the entire time crying and whining) With that said, I am pretty sure the walking has come on his own time. He does and will continue to need PT for the road ahead. If he continues to cry and refuse it, it might be suggested that we try again once he is a little older. The therapist nor myself can not physically MAKE him participate. It is really frustrating. We go to Texas Children's again tomorrow, so I guess we'll see how he does and what is recommended.

We also started swimming lessons this past Monday. He did great...ON MONDAY. Today, not-so-much. Again, so frustrating. I'm not sure what it is. It was not fear. He was just whiny and didn't want to participate. I am beginning to think he gets over stimulated easily or out of his comfort zone quickly. Either way, it is frustrating. Even the teacher could tell he is not fearful of the water. Which I guess is a good thing in the long run but annoying that he doesn't find it fun that I am trying to play with him in the pool! With swimming as his only shot at a future sport, I hope he starts having fun soon! :) Maybe today was just an off day.

Greg turned the big 4-0 this month! Was that a surprise to some of you? Yes, we are almost 11 years apart. We love it that way! A few days before his actual birthday, I had a surprise evening planned for the two of us when he got home from work one evening. I hired a sitter, got dressed up, and made reservations at a yummy restaurant in a neat place not far from our house. After dinner we walked over the this cupcake place for dessert. I rarely am the one who pulls off any type of surprise so it was a fun night for both of us!

Overall, we are doing wonderful. Luke is progressing.....just slowly. It does break my heart a little to see him not play like other kids his age...mostly outside on playgrounds etc. Greg and I keep wondering when it is going to register in his little mind that he is sitting in the teachers/adults lap while everyone else is running around, sliding, swinging, and riding bikes. I keep praying that when that day comes, God will protect his heart from hurt and equip his mind with the capability to understand that God made him extra special.

physical therapy

We had our first physical therapy this morning at Texas Children's. Luke did NOT like it...not that I thought he would, but he did not cooperate AT ALL. I am so thankful that we are going to be working with a sweet therapist who was so patient with my emotional little boy. Her name is Kristin and she actually knew a bit about EB. She also knows our sweet dermatologist and knows another pretty influential dermatologist in the EB world. Oh and she knows so much about wound care! The weirdest part of all is that she was not supposed to be our therapist, but was filling in for our original one. She said she wants to take on Luke as her patient...not sure WHY after the way he acted...but grateful nonetheless. Thank you Jesus. I was praying for a sweet one!

The appointment started out pretty good. Luke crawled around and explored. He seemed pretty happy. Well, I am not sure what happened but he lost it and pretty much cried with big tears the rest of the appointment. It was hard to get him to do anything. I think part of it was me being there. I was his safety net whenever he got uncomfortable. Very frustrating. I hope I can stay outside next time!

Kristin seems to think he doesn't have much core strength and favors one leg. I knew about the leg because he usually puts all of his weight on the leg opposite of the foot that is constantly blistered so badly. Anyway, I asked her at the end of the appointment if she thought he would be walking by September, when he turns 2 and she acted like that might be pushing it but was hopeful. All we can do is make it through these sessions one at a time and hope to see improvement. I know I will learn a lot too so I can help him more at home. Greg said that he wants to go to a few appointment too. She said she wanted us to have some therapy sessions in the pool. That sounds great to me, but I really don't want anything negative to be associated with water since swimming is one sport Luke might be able to participate in. We are signed up for mommy and me swim lessons in May. We will see how those go first. :)

I brought my camera today but did not get a chance to snap any pics with the way Luke was acting. I do, however, have some new pictures on my camera and will post them next.

As far as what we have been up to...Greg found some great outdoor flooring mats that are Luke friendly. We bought him a sand and water table (no sand though) and he has loved playing in the water outside. The weather has been perfect so we are tying to enjoy it to its fullest before the heat wave! We are going to look for a little swing/slide set to go on the mats too to complete his little play area. I love watching him be able to crawl and push his push toy outside! He is so happy out there now with a softer surface to play on.

Pictures to come soon!