SUMMER is here and that means it is HOT!

Well the heat has officially arrived here in hot, humid, Houston! I have been a little anxious to see if the heat would effect Luke. I read something about EB patients should try to avoid hot, humid weather and that a dryer, cooler environment is better for their skin. Gosh, do we live in just about the WORST place in the US or what?! But this is home for us now and we love it here; however, Luke's precious skin DOES NOT! He is getting LOTS of new blisters everyday and they are bad ones...not that any blister is a 'good' one, but these are different. It seems like every time we pick him up there is blood on him and us. I have changed more sheets lately because there is always blood in his bed. I have also gone through more Shout to get blood stains out of everything! On a number of occasions, I have actually "popped" blisters with my hand on accident just by getting him out of the car etc. (sorry if this grosses you out...I don't' exactly love it either but this is the reality of this awful disease.) I have spent the last 8 months trying to avoid having to wrap his whole body. We feel SO blessed and are very thankful for making it this far without having to do a daily more extensive dressing change. My heart has ached for so many EB families that HAVE to do this everyday. I knew that when Luke crawls, we would need to keep his legs dressed for protection, but he is still so far from being on the go. Well, now that I see what 90+ degree weather is doing to his body, Greg and I both think our time has come...to at least try it and see if it makes things better. We have already tried to do an entire arm and leg and it was not beneficial. It actually made him blister more. I know it's because we do not know how to properly do it...SO FRUSTRATING! BUT SWEET Patrice Williams (I do not know how to insert links, but check out The Williams Family blog on the right) sent me the most DETAILED, email I have ever received to help us out!! She gave me the EXACT play by play on how to do a complete dressing change along with tips and tricks to keep Luke occupied! Thank you so much! I am waiting on a shipment of one of the supplies and then I think I am going to practice on Greg's arm before trying Luke. Both Patrice and Katie have advised us to stay inside as much as possible and keep the AC on cool! I do not know what in the world I would do without the help/advice from moms who know this all to well. I still feel so ignorant in how to care for Luke. I am still hopeful that Luke will get to swim though...at least he won't sweat in water and our dermatologist told us to go for it!

We go in next week for Luke's NINE month check up. The time is going by entirely too fast! He is cutting his 2 top teeth. He seems to know how to wave at people...at least that is what I think he is doing, and is already getting frustrated not being able to move anywhere! My mom got him a Jeep walker last week. It is so cute to see him in it; however, he only knows how to go backwards. I'm sure he will be 'following' me around in no time!

BACKTRACK: I had started this post earlier today and I am now finishing it. We went to see the pedi today because Luke has been crying and pulling at his ear every time I lay him flat on his back. He has a bad double ear infection...again! Ugh. The dr. said this is not a good sign that he has gotten so many ear infections over these past few months considering it is not even cold season yet. We will probably meet with out ENT after the Summer for a tube consult. yuck!

Here are a few recent pics...some are from a fun Memorial Day celebration at our friends, The Grimmer's house!

Enjoy!