What he can do, doctor visit, and more!

not a great shot, but this was his Bible dedication day...I have better pics on my dads camera

5 months and looks SO GREAT! (not to brag :))

I forgot to document what Luke is doing these days on my last post. Here is his latest tricks:

- rolled from his tummy to back (I have this on video...still don't know how to get it on here though...) just today he rolled from his back to tummy!!! Lindsay was watching him while I went to the doctor and she said he was rolling everywhere!! Thanks for playing with Luke Lindsay, Nancy, and JT!
- trying/wanting to sit up. He is not near doing it, but he does that little stomach crunch thing when he is layed back
- still not great with his hands. If there is something (toy etc) in front of him he will reach for it, but if he actually grasps it he doesn't know what he is doing and lets go
- starting to be more steady in his exersaucer and notice/play with the toys on it
- babbles A LOT! I love to listen to him "talk." I think it's so sweet :)
- still no solids- not even rice cereal. Because of his skin we were told to hold off as long as possible (will start in the 6th month) He drinks about 6 bottles a day ranging from 4-6 oz

I took Luke to see Dr. J (pedi) last Tuesday (as I mentioned in my last post) just as a precaution because he had been fighting a cough/cold for almost 3 weeks. I knew I was probably going to be told it is just a virus and it would have to run its course. Well...here is how it went:

Dr. J - what's going on with Luke?
me - ohh just battling a nasty cough and runny nose
Dr. J - any wheezing?
me - NOOOO I have never heard that! I'm sure he is just congested.
Dr. J - (puts stethoscope on Luke) (gives me a big smirk immediately) oh yes, he is wheezing!
me - oops. I guess I don't know what wheezing sounds like.
Dr J - (takes one look in an ear) yep, an ear infection too
me- oh dear.
Dr. J - you are really lucky to have a baby with the disposition Luke has...tough time breathing and and ear infection and you didn't notice! :)
me - haha(thinking BAD MOMMY!!!)

sooo we went in just to check and walked out with 5 prescriptions 1. antibiotic for ear 2. ear drops 3. steroid for lungs 4. breathing treatment 5. inhaler

and if that is not enough...the antibiotic has caused a SERIOUS rash on his bum which has now BLISTERED! (the previous blisters in his crack are still there too) I had to drain about 10 small blisters on his upper thigh this morning so they would not grow anymore. I am still leaving the ones on his bum alone in fear of infection. Dr. J has called in some cream for the rash and we are going to see our derm. on Wednesday. Our derm, Dr. Bree, who we LOVE is the director/lead doctor of a summer camp for EB kids. I can't wait to get more info. on it when we go see her. She has been our favorite doc. and I can't wait for Luke to be a part of her camp!

One last thing...I did not want this to be a sad post but I just read a story that made me so sad and scared. I will copy and paste it below. Please pray that Luke just has a LONG COLD and nothing like this happens. Also, if you're praying, pray for ALL OF THE SICK BABIES and those families who have dealt with the loss of a little one! I am scared because Luke has now had this congestion stuff for almost 4 WEEKS! I am getting a new steroid today so hopefully it heals his lungs! Oh and the type of EB this baby had is what we are predicting for Luke.

"Like many babies with older siblings, he caught every cold his brothers brought home from school. And they always settled in his chest. Even with breathing treatments and steroids, it was difficult to reduce the mucus and inflammation in his lungs. He had frequently breathing difficulties that landed him in the ER. He never had any signs of upper airway issues and nothing that indicated that it was EB related. Two weeks ago tomorrow he stopped breathing for a third time. This time is heart stopped as well. It took 15 minutes to bring him back. He had been on a ventilator ever since. Yesterday he had an MRI done which shown significant brain damage from being without oxygen for so long.

It is with a broken heart and deep regret that I must inform you that little Jameson got his wings this morning"


Sorry to end on a sad note..I PROMISE the next post will only be HAPPY! Happy Valentine's!

almost 5 months!

Luke is napping right now...or at least trying to, so I thought I would give a little update.

This past weekend my mom and dad came in to visit. We had Luke's Bible presentation at church Sunday morning. Luke did great! My dad took some pictures and I will post them as soon as he emails them to me. I know events like this are probably super special to all parents, but I can't help to think how special it is for us that Luke is thriving like he is and for him to get to be a part of these special moments. We try not to take advantage of anything we do with our little one. We know there will be many times throughout Luke's life when he won't get to do "normal" things because of his terrible disease so each milestone seems extra special. (again, if I could only pause his life and keep him a baby! no crawling! no walking! no solid foods! only cuddling and bottles!:) just kidding...I want him to experience all of these things as long as he can do them without pain!)

We are off to our pedi. this afternoon. Luke has had this nasty cough for almost 3 weeks. My sister told me that sometimes a cough longer than 2 weeks or so can possibly turn into pneumonia. Sooo we are going as a precaution! It has been a little scary at night when he coughs and it turns into a choking sound.

I also want to get the sole of his foot looked at. There is a BIG blister that will not stop growing! It has been so frustrating! I poke it so many times and it keeps filling back up and getting bigger! It is really red too so I just want to make sure nothing looks infected. His bottom crack is still looking bad. He now has multiple blisters down it. They don't seem to bother him much unless I accidentally wipe instead of 'pat'. We have been keeping them COATED with Aquaphor and Desitin..hopefully they heal SOON! On another note, I have become SO much better at wrapping him! The dressing on his feet actually stay on now! :) Yay!

Luke will be 5 months on the 6th. I can't believe how fast time has gone by. There has been SO much joy brought into our lives by this little boy. He is a fighter that keeps on fighting! He has definitely helped Greg and I become stronger people, closer to one another, closer to God, and has taught us how to love like we never knew possible. Well, I actually attribute that to our Father, but He continues to use Luke as an Earthly teacher! 2009 was filled with so many emotions...here's to a wonderful 2010! (I will take his 5 month pic this week and post it.)