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!

3 month summary

I am about to jump back on the blog band wagon. September, October, November, and now December have been some of the busiest months ever! I won't bore you with everything that has been going on but just a few things...(this is an extra long post but I promise that the ones to follow will be short and sweet!) My jump drive is not working so I can't upload pictures to the computer at the moment. The next post will be all of the missing pictures from this post. So for now is just the boring text!

We traveled to Virginia to spend Thanksgiving with Greg's side of the family. We missed going last year, but with a 2 month old that needed a lot of care, we were not able to make our annual Thanksgiving trip. This was Luke's first trip to visit the beautiful countryside in VA. He did WONDERFUL! Praise God. We had a wonderful week full of playing outside on the farm, lounging around, eating a lot of yummy food, and best of all visiting with relatives we don't get to see often enough. We miss everyone already so much. Rachel, Greg's mom, is so loving and made everything just perfect for us. It was so nice to have the extra help with Luke and the extra relaxation! Diane, his sister, took the week off of work just to spend as much time as possible with us! It was so nice to catch up!

Luke had his 15 month check up on December 6. We made it from 12 months to 15 months with not ONE visit to the pedi! woo hoo! Here were his stats:
head-67%
weight-30%
height-85%
For anyone who knows about EB, these are phenomenal stats! EB children are typically on the smaller side. I'm sure he will slow down a bit but for now, GO LUKE GO...you show them!

Dr. J was so impressed that we have made it 15 months with NOT ONE skin infection. Can you believe it?? I can't. It must be the million baths, hand washes, and big box of alcohol swabs! Now let's make it 15 more months! Also, we were worried about having to put tubes in...well not anymore! Knock on wood, we have been a while with no ear infections either! I actually get teary eyed when I think about how good Luke is doing. We owe it all to our God and ALL OF THE FAITHFUL PRAYERS FROM SO SO SO MANY! THANK YOU!

Dr. J was still not too impressed with Luke's mobility. He is still not walking, but he wants to so badly! He is crawling better and better. I had no idea that he knew how to get up a stair. I found him at the TOP of the stairs the other day. I was a bit scared but SO SO SO SO SO proud! Once I told Dr. J that story, he was not as worried. We both know that his lack of movement is strictly due to EB. Some days he hurts worse than others therefore he doesn't "practice" everyday. I, myself, am a proud mom and am happy with where he has come! He is one tough little boy.

Luke is still not wearing shoes. My mom got him some Ugg boots lined in fur for the Winter and they are perfect. I am not sure what I am going to to when the warmer weather gets here. We will probably try wrapping his feet and buying bigger shoes...we will cross that bridge when it gets here! (I fought him to put some shoes on him for our Christmas card picture and they were off immediately after!)

Lindsay and I took the boys to visit Santa at the mall. We had them matching in there new Christmas PJ's and boots. The line was way too long to make them wait, so we did our own little photo shoot behind santa! I love the ages they are and think they look so cute playing together. They really know each other now and will sit and laugh and laugh at each other. TOO CUTE!

Greg and I celebrated (well, haven't really had a chance to actually celebrate yet, but will soon) our 4 year anniversary on December 16. He got me a new lap top so now I have no excuse for not updating the blog. I must say that these past 4 years have definitely been the best years yet. Marriage is the greatest blessing and I love our life together. He is a wonderful man. I always talk about how much Luke has taught us about life, well, Greg has taught me quite a bit too. He is the most patient, loving, kind, and giving person I know. He is slow to anger and quick to make a person feel better about themselves. He never expects much in return. He has shown me how to give generously and to make things about the other person. He has shown me how to be slow to speak and quick to listen, how to use the gifts we have been given for the good of others, and most of all he loves with everything he has...and he has so much. As I type this, I am in awe of what a Godly man he is. I love you Greg and can't wait to spend the rest of our life together. Thank you for being an incredible husband and a wonderful Daddy to our sweet boy. I would not make it in this world without you. You are everything to me.

Last Thursday we spent the evening driving to Dallas to celebrate my sister, Anna, get MARRIED! We now share an anniversary weekend with Anna and Marshal. I hope we get to celebrate some of the years in the future together! It was a wonderful weekend and we couldn't be happier for them. The wedding was BEAUTIFUL and so was the bride. Everything went off without a hitch. I was honored to be by her side as her Matron of Honor. Luke was the ring bearer and did fantastic! Since he doesn't walk, I carried him down the aisle and handed him off to Greg. It was such a special day for everyone. I don't have too many pictures on my camera because I was too busy taking pictures with her camera. I will post some as soon as I can get hold of them. Congratulations again to the happy couple. May God bless you both with many many wonderful years together. You will absolutely love being married. It is a precious gift.

That about sums up some of the major events that have been going on. We will spend Christmas weekend in Longview with my family. We will also be at the Texas Bowl cheering for the Baylor Bears here in Houston next week! Sic'em!

I love this time of year so much. We have SO much to be thankful for. I love love love our life and wouldn't change a thing about it. I pray 2011 is a great year!

The BIRTHDAY Post! (better late than never)

What a year, what a year, what a year!

In some ways it was the fastest year of our lives and in other ways it was a slow one. I will never, ever forget sitting in the Dermatology clinic room at Texas Children's Hospital, holding my 3.5 week old baby, Greg sitting as close as possible on my left, facing Dr. Bree (who we have grown to LOVE and will always hold a special place in our lives) listening to her tell us what no parent would ever want to hear..."IF he can get through infancy, he will probably have a good shot at life." Those words will forever stay stamped in Greg and I's memory. It was then and there that I could not wait to celebrate my little boy's FIRST birthday! And THAT we did!

I have learned more this past year than I ever thought possible..not just more...I have learned the more IMPORTANT things in life. I have grown in my faith, learned how to have HOPE, learned how to truly cherish everyday, become a little less selfish, become a better wife, the real meaning of team work, learned how to let others help, learned not to dwell as much on petty things, learned that I really have no idea what PAIN feels like, and SO much more. I still stumble ALL OF THE TIME; however, our God has used Luke to teach Greg and I what life is all about. For that, we are thankful.

Luke, if you ever read this some day, you are our hero. Your Daddy and I are so proud of you and all you have shown us during your first year of life. You are the toughest little boy and such a fighter. We can't wait to see all you will accomplish in the years to come! We love you more than anything sweet baby. HAPPY FIRST BIRTHDAY!

We celebrated TWO times over the course of his birthday week. The first party was in Longview at my parents house. It was small but special. The extended family came over for hot dogs, hamburgers, cake, and ice cream. It was great to see the family and for them to be there for Luke's birthday. Greg and I know without a doubt that this year would not have been as good without the prayers and encouragement from friends and family. THANK YOU for celebrating with us. THANK YOU to mom for putting the party together. It was perfect!






this was on his actual birthday at my mom and dad's house...we went in singing happy birthday to him :)


The next party was here in Houston! It was 'Candyland' themed and definitely a "sweet" success. Greg's mom, Rachel, and Billy flew in from Virginia for the special occasion. My mom and sister also came for party # 2!! It was everything I envisioned and more (except for the mega HEAT-Luke did not get to play outside :( )! THANK YOU to everyone who came to help us celebrate this wonderful occasion. We are so thankful to have so many wonderful family and friends who love Luke and have been faithful in praying for his health. God is good all the time! It brings tears of joy to my eyes every time I think of how far our baby has come and how amazing he is to handle each day so gracefully.

Here are A LOT of pictures from the special day. A friend of Greg's, who happens to be a photographer, was so nice to come to the party and take pictures. Thank you Tom Folder. www.folgerstudios.com