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!

Staying Busy!

We have been staying busy around here which is a good thing these days. Luke has been a bit high maintenance lately. I'm not sure what it is...maybe his age, maybe his feet/pain, maybe teething (he is cutting 2 fang teeth), maybe frustration with his lack of mobility, or maybe he is just being his spoiled little self.

Last week we went to the zoo for the first time in a long time. Unless we go again pretty soon, it might be our last time in a long time with the heat approaching. He seemed to like looking at the animals and I was so impressed that he was not scared! He even liked being face to face (glass separation) with an ape! We had a great time with friends, rode the carousel, had a picnic lunch, and ended the day with a ride on the train. Unfortunately I forgot my camera, but Lindsay snapped a few pictures that I will post as soon as I get them!

Last night Greg and I dropped Luke off at Parents Night Out at the church where he goes to school. It is the best thing. We paid $20 for him with the hours of 4:30-8:30. What a bargain! He was with his teacher, who we LOVE, from MDO. They get to eat pizza, play outside, watch a movie, and do a craft. While Luke was being cared for, Greg and I enjoyed a nice dinner together, did a little shopping for some outdoor furniture, and ended the evening with a stop at Baskin Robbins Ice Cream Shop. It was a nice evening, just me and my hubs.

Well, it is time. Luke is going to start physical/occupational therapy in 2 weeks. We have had a rough time around here. He has not improved at all walking wise. The frustration is building in both him and me. It has been so hard for me to watch him want to do something so badly and not be able to because of pain. It is taking a toll on me emotionally and him too. I am not sure if it will help, but hopefully it won't hurt. The blisters aren't going anywhere but maybe he will learn new ways of distributing his weight to gain enough balance to go! Our first evaluation appointment is at Texas Children's on April 8. From there we will know how often he needs it etc. I REALLY hope he starts walking soon! He will be 19 months on the 6th!

Next week I am hoping to take him to the Houston Children's Museum. It is supposedly one of the best in the nation. There is a "tot-spot' that is designed just for toddlers and is supposed to be soft enough that Luke will be able to crawl around and play. Another bonus is that it is INDOORS! I have also been wanting to take him to story time at this little local book shop not far from our house. I have heard great things about it. He really really loves being read to. In fact, Luke kept asking for 'book' this morning before church. He sat contently in Greg's lap while he read book after book to him so I could get dressed. So sweet.

That's about it for now. As for an update on his foot, it just keeps starting to heal then will fill back up again. Ugh. The derm. did not have anything new to say. She did a culture on a suspicious spot on his foot but I have not heard back if there is any infection. She wrote a few prescriptions for things and loved on Luke while checking him over. Hopefully it will fully heal soon! Thanks for the kind words and prayers!

A few pictures and update

Ok, here are just a few cute pics that I snapped a few weeks ago. Luke was doing great that day walking with his push toy. He had just started getting the hang of it. I am one proud mama!






Here are his 18 month stats:
HEIGHT: 32.5" - 58% (went way down from 15 month)
WEIGHT: 25 lbs - 39%(went up just a tad)
HEAD: 19" - 64% (still a big noggin)

Overall he is in great health internally which we are so thankful for. He still tends to have a raspy voice which I am pretty confident is strictly EB related. I have been doing a lot of reading on his specific type of EB - simplex dowling meara. I guess his voice box gets irritated easily. He is still the pickiest eater in the world. Has quite the sweet tooth. I can't get him to try new things very easliy. If it is something he LOVES, he will eat just about every bite, otherwise he will eaither spit it out or won' t open his mouth at all to try. His current favorite foods are bananas and cookies. :)

His arms look beautiful. His tummy is a bit better. His legs are still pretty blistered but we could use some prayer over his little feet. He is not walking and for the last week+ he has not even pushed his push toy. He has a HORRIBLE, HUGE blister on the bottom of one of his feet. (there are 3 others on the bottom of that same foot too) It is by far the worst we have had to date. It will not heal. Greg and I have drained and drained and cut lots of dead skin off. Just when we thought it was starting to heal, he woke up one morning with it completely full again. FRUSTRATING! Then, last night after draining it, I went on to other areas of his body and within those few minutes, it had filled up big time with blood. I am talking...LOTS of blood. WHAT?! This has never happened. Pretty much, he has been bleeding from this blister for days now. We have been set to see his derm next Wednesday because she is off for Spring Break this week. I just put a call in for his pedi. to explain the issue to get his opinion. Anyway, we just want it to heal so he feels better and will go back to praticing walking again. It has starting getting to Greg and I (and mostly Luke) that he can't play like a normal 18 month old. He WANTS to so badly. He loves to slide at the park and wants to "go" (get down and 'walk') all the time. The other day, he was literally scooting on his bottom across the concrete to get to the slide. (luckily, I picked him up when I saw...so no bottom blistering :)) He still only crawls on carpet and "scoots" on any hard surface. Some people might wonder why we aren't wrapping his whole body. Well, I recently read that for his type of EB, bandaging might make it worse. This is one topic of discussion for our derm...along with many other questions. I am really really anxious about Summer approaching. If anyone wants to come hang out INDOORS, you will know where to find us when the heat comes! Thank God for our pool. I hope he loves it this Summer!

Greg and I had a wonderful time with friends on our trip to Colorado. I had so much fun skiing! Thanks for the prayers for Luke while we were gone. He did great with his Kippy and Pappy. They loved having him and he was such a good boy. It was great to have some time with my hubby and be able to relax knowing Luke was in good hands. Thank you so much mom and dad for keeping him! Also, a thank you to my sister, Anna who came to stay a few days while we were gone to help with Luke. She is the bestest nurse he has! Luke LOVES his "Diti" (Auntie).

I will post about our ski trip soon! Right now, I hear a little boy on the monitor calling for Mommy!