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!

emotion.

*** I wrote the post below a few weeks ago. As an update since this post, I am feeling better. Sometimes, I get a little emotional when I am CONSTANTLY reminded of stupid EB. His stomach is looking so much better now that I switched diapers. It seems to be healing without new blisters popping up at such a rapid pace. YAY! It is really amazing the pace that his little skin regenerates and heals. Seriously. Sorry if this is TMI, but I can put a clean sheet on his bed and when he wakes up in the morning, it be filled with lots of scabs. (along with finding them everywhere...our bed, washing machine, lent filter....everywhere!) Gross, I know, but a wonderful reminder that God does HEAL. Maybe not always perform miracles to CURE, but He does HEAL. Our bodies are amazing.

Other news: Luke came down with an awful stomach virus a couple of weeks ago. NOT FUN. Then I got it, also NOT fun. Greg managed to stay away from it. Whew, so glad it has passed. I guess the month of February hasn't been the best health wise. Luke has had 2 ear infections and a stomach virus. yuck! Hoping March is a better one!

Some really exciting news...Luke can now walk with a walker (push toy)!!! It is so cute to watch. Hopefully he will be an expert solo walker in no time. He feet are taking a small beating, but he is so tough and wants to be on the go SO badly! My sweet mom had some shoes made for him to try. They are adorable and seem to be doing ok. She also purchased the pattern to make them herself.

Also, since this last post, Anna and Marshal (AKA Auntie and Uncle Marsh) came to visit. Unfortunately, I don't think we got any pics, but it was a great weekend. Even thought the house had literally been sterilized prior to their visit, that darn virus got Anna and she was home with the bug by Monday night. SO SORRY!

I will post his 15 month stats soon... or I might just post them with his 18 month stats since we go for that appointment on March 7. If you think about it, please say a prayer for my parents and Luke next week (Sun-Thurs). Greg and I are taking our first real trip sans Luke! We are going skiing with some dear couple friends from church. I am excited for some much needed time and relaxation away with Greg but am REALLY anxious about leaving him. He is a sweet little boy but happens to require extra care than most. I know mom and dad will be great, I just hope Luke is great in return!




POST FROM A FEW WEEKS AGO:

For some reason, I am feeling a lot of different ones. It's a good thing, I think. I have been a little more sensitive about Luke lately. Deep down, I know I shouldn't be. We have entirely too much to be grateful for. He is SO happy and healthy, internally (which is the most important thing). But, lately I can't seem to even change his diaper without tearing up. He little body looks pretty rough. I was hopeful going into Winter that he would have a few months of less blistering. Well, Greg and I are not impressed with the cooler weather. His face did have a longer spurt of being clear, but oh my not his legs, feet, hands, and STOMACH! The only thing I can think is causing the mass blistering around his tummy is his diaper but it seems so weird that he has always worn the same diapers and now all of a sudden it is a blister frenzy! Our precious, sweet cleaning lady/friend (I used to teach her little boy) who we love dearly and she loves Luke so much was here the other day while I was doing some blister routine. She heard Luke crying and crying, and like she always does, ran upstairs to check on him. When she saw what he has to go through, she starting crying so hard, which then made me cry too. It's not fair. I HATE IT and would do ANYTHING to take it away from Luke.

I feel a bit guilty complaining and being negative. I try not to complain too much and for the most part have adapted to EB. But every now and then, I get frustrated and sad about it. I honestly mean it when all in all I am so incredibly thankful. There are some REALLY TERRIBLE illnesses out there and WAY MORE SEVERE EB, to be specific.

On another happier note, Luke is loving his one day a week MDO. He is learning so much and it is so fun to watch. We have FINALLY gotten into a good routine. He takes one GREAT nap a day right after lunch. We have sort of turned the game room into a play room and moved most of his toys. It is carpeted therefore he is able to really crawl around and play without stopping and whining because it hurts on the tile/wood downstairs. We have a couch and TV in it, so it is nice for me too and Luke is so content just playing.

Last weekend, all of our girlfriends had a BIG 30th birthday celebration/girls weekend. Lindsay did a fabulous job planning the festivities. There were 12 of us and we all met at the Elder lake house on Lake Limestone. It was a wonderful weekend of games, eating, Miss America, eating some more, catching up, and some more eating. Greg had a wonderful time with Luke too. He really said he had a great time. They went to the grocery store together (where Luke got a new balloon and Lightening McQueen car) , played at home, went on a walk around the neighborhood in his blue car, and Greg even blow dried Luke's hair. SO CUTE. I am so thankful for Greg. He loves so deeply.

Promise to do a pictures only post next...I do not know how to get pictures on here from our new laptop. I told you I am not good with computers. :)

Welcome 2011!

Another 'words only' post. Greg bought a new memory stick for the camera so I was able to take new pictures; however, the USB that he got to upload them on the computer was the wrong one. SO...there will be a post of pictures only coming very soon!

We had a great Christmas in Longview with my side of the family. I have some pictures of some special gifts we received that will be uploaded soon, hopefully! Luke did wonderful. He had absolutely no idea it was a special day but loved his new toys nonetheless. Kippy, Pappy, Auntie Anna, Uncle Marshal, and other family members spoiled him again with so many fun things. I know next year will be even more fun when he actually realizes what is going on. I can't wait to start a few traditions with him. One tradition that I am looking forward to is having a birthday party for Jesus. We will bake a cake, light some candles, have some gifts, read the Christmas story, and have a little celebration of our Jesus Christ!

We rang in the new year with some of our dearest friends by having a yummy dinner and watching the fireworks at City Centre. I have to admit, it was a bit hard to stay up past midnight and we were home and fast asleep by 12:45. it was a great evening and I feel incredibly blessed to have the friendships I have and look forward to a new year together!

Greg and I don't really make 'resolutions.' I admire the people who do and actually keep them! Instead, we just talk about some things that we need to improve upon long term and in our daily lives. One thing that I want to do more of is attend more Sunday school AND church back to back. We usually go to one or the other, but the 3 hour stretch for Luke in the nursery is a long one. Now that he isn't really taking a morning nap it should be easier. We started the year off right by doing it! Luke did great and was fast asleep the second he was in the car.

Overall, 2010 was a great year for us. We feel blessed in so many ways. I am especially thankful to have the patient and loving husband I have and an incredible little boy who continues to teach me and humble me every single day. I'm not sure life can get much better.

Here is a quote from another blog I came across and it is just about exactly how I feel yet I would have never been able to write it like this. Sometimes it does take some strong emotions to make one see HIM. Only He knows what is in store for the Jones family for 2011...I am eager to find out!

"I find beauty in not only the beautiful things in life, but the bittersweet and sad as well. To me, there is something poignantly lovely about the human experience from its splendor to its grief. God created all our emotions, not just the happy ones, and for His good purposes. That's why a good cry can feel so good. And hitting our limits forces us to look outside ourselves for a Savior. It is in the plea, when we're at our end, that we can find that which is truly life-giving. Personally, my moments of deepest grief, deepest pain, have resulted in the most beautiful seasons in my heart. I've met God more intimately in those moments than in all the other pleasant ones combined. What isn't completely lovely about that?" topofthepagewithleslie.blogspot.com


Happy New Year!