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!