some people...

A few weeks ago when we were at Luke's doctor's office a lady probably in her late 50's sat down beside us. Immediately when she looked over at Luke, she looked at me and said, "thank GOODNESS today is not picture day," with a smile. I just ignored it politely. She continues to stare at Luke and he was of course hamming it up for her...smile after smile. The lady finally asked how he scraped himself up. I told her he had a skin disease that will not ever go away. She said, "oh, my son had Eczema on his stomach when he was little." In my head all I could think was I WISH ALL HE HAD WAS ECZEMA ON HIS STOMACH! some people...

We were back at the doctor today. A lady on one of those electric ride on things was waiting on the elevator beside us. Here is the conversation:

lady - "what in the world does SHE have going on?"
me - just a little smile
Luke - smile smile smile at lady
lady - "SHE? HE? has something going on, my goodness"
me - "it's a HE" (in my head, duh lady he has on navy and white stripe romper with the name LUKE monogrammed on it!!!!!!!!!)

(we both get on elevator)

lady - "so how long has he had that?"
me - "he was born with it"
lady - REALLY?? hmm, my son was born with dry skin."
me - (hold it in, Melissa) exit elevator. some people...

I know people wonder. I would too. I really do understand that people are curious and that yes, Luke does look "skinned up" to say the least. It just amazes me that some people express their curiosity the way they do...especially adults. I am thankful that at least for now Luke has no idea what people ask or say about him. I am just so worried about his feelings once he is old enough. Greg and I already feel like Luke has a sensitive personality and that he wants to make people feel good. He is a "charmer!" :) It makes my heart ache to think of others hurting his feelings and/or stomping on his self esteem. I guess I need to start praying about how I am going to help him through those tough times.

as for an update... Luke has been sick, sick, sick. He had a few big throw ups on Friday, Saturday, and Sunday. Sunday night he spiked a 103.8 fever and woke up today (Monday) with 105.8! This was a little scary. I know fevers can get high, I was just a tad worried that it meant an internal infection. We went to see Dr. J again (we were just there Thursday for extreme fussiness..thought it was his ears) and he now has ear infection #4 in about 2.5 months! He also has some nasty virus. So far Motrin is keeping his fever down but once it wears off the fever gets high again. It was back up in the 105's this afternoon. If this keeps up, we are back to the doctor for some tests on Wednesday. He has either been smiling, crying, or wanting to cuddle all day. I have actually enjoyed just rocking him while we stare at each other. Before I know it, he won't want to be rocked at all. Greg has been snuggling with him this evening while I cooked dinner. I love to watch them too.

Saturday we went to the Garrett family lake house for the night. It was great to get away and spend time with the Garretts, Shelfers, and Chambers. (we miss the Cole's but they were walking for Karsyn and Kaden!) The house was amazing and was the absolute perfect house for company and kids! We cooked some yummy meals and had snacks galore! We also celebrated Greg's birthday complete with a cake and candles! I had big plans for Luke to swim in the baby pool with James Thomas and Avery. Let's just say it was a little cold for the boys but Avery sure did love it! Luke was getting sicker by the minute. He threw up all over the house (so so so sorry), would not sleep, and only wanted to be held. Poor baby. It was still great to be there with friends but next time I hope Luke has fun!

Here are a few pics...

besties
Avery and her daddy
Luke and daddy
breakfast...Greg is getting thrown up on outside:)
Lindsay, James Thomas, Autumn
the cake
Josh and James paddle boating
Greg sporting the Bjorn...the only way Luke was content
this pic was from our weekend in Longview
Luke and his Kippy
Luke and his Auntie Anna

update

I took Luke to see our favorite of our doctors this morning, Dr. Bree his dermatologist. Luke's little body is looking extra rough these days. I counted over 10 new blisters on just one of his arms. I can't figure out why these popped up all of a sudden. He isn't even crawling yet! One foot is still looking awful. It will not heal and it seems to hurt him when I drain and dress it. Sometimes I just stare at his little innocent body and say over and over..."it's not fair little buddy, NOT FAIR!" Why why why in the world is this precious little baby covered in these ugly wounds???? sorry, had to get that out! Most of the time Luke is content during the 'after bath routine' (diaper cream, diaper, body scan for blisters needing to be drained, draining, antibacterial ointment on suspicious wounds, aquaphor on everything else, wrapping his feet, lotion, then finally PJ's on!) but when he does cry, Greg and I just stand there wanting to cry right along with him. He still amazes us with how tough and PATIENT he is! I pray he stays this way as he gets older and squirmier. I have recently heard of two other EB babies who are given prescription pain meds during dressing change and bath. I am thankful we are not there. THANK YOU JESUS!!

Anyway, Dr. B took a good look at Luke today and of course Luke hammed it up for her. He smiled and laughed nearly the whole time! She thought his arm might be bad because he got bit by a mosquito or something. She said that anytime Luke gets a bug bite he will most likely blister. We have been outside a lot lately. He might have a a little staph on his foot sore. Overall it was a good appointment and nothing looked too scary. Dr. B was impressed with Luke's growth. He is definitely beating the EB odds for size! I think it's because he got a head start at birth weighing in at 9 pounds 4 ounces! She reminded me to keep him extra hydrated as the weather is getting warmer. She said swimming will be great for his blisters this Summer! You will know where to find us! I'm sure I have mentioned this before, but Dr. Bree runs a camp in Texas specifically for EB kids! Kids can start going when they turn 8 but sweet Dr. Bree told Luke he can come when he is 7! It is a normal Summer camp for kids except there is an entire nursing staff trained in EB care to do all of the dressing changes etc for the kiddos! It warms my heart to think about all of these kids getting to do "normal" fun activities and still get the care they need. I can't wait for Luke to be a part of it.

Friday is Greg's 39th birthday! I love him so much and can't imagine life without him. Our journey is special. God hand picked him for me and to be Luke's daddy. He brings me so much joy. Happy birthday my love!

Saturday we are going to the Garrett's family lake house for the night. We are looking forward to a layed back getaway! There will be 4 couples and 5 little ones. I will be sure to post lots of pics next week!

stay tuned...:)

Easter weekend

Easter weekend was good but not as good as I had hoped for. Luke had been fussy for a couple of days last week so I decided to take him to Dr. J to get his ears checked on Friday. Sure enough he has another ear infection. This is number 3 in less than 2 months! When they weighed him he had not gained AN OUNCE since his 6 month check up. I guess they aren't too worried.?. I have started to notice that anytime Luke is getting sick (even a minor cold) he refuses to eat solids and doesn't drink much formula. I have also noticed that when he is sick he tends to blister more. I am guessing this is because his little body is under stress and ANY type of stress (physical, emotional...) can cause him to blister. Not drinking much and blistering are NOT a good combo...dehydration can happen quickly. Thank goodness for Pedialyte! He loves that stuff!

Luke is doing better now. I think the antibiotic is helping the ear and he is slowly gaining back his appetite. It is tiring trying to force feed him. Trying is the key word...he will not open his mouth for anything!!!!!

Saturday we went to Wyatt's second birthday party at the park. It was fun to see everyone and have donuts to celebrate one of our great friends turning TWO! You can see in the pictures how tired and yucky Luke felt!

Easter Sunday we had great plans to have a yummy brunch with the Garretts, go to church, then take pretty pictures in the flowers. Well...we did go to brunch with the Garretts and it was yummy; however, Luke was fussy so we decided to take him home instead of attempt church. I told Greg on the way home that I would help him get Luke down for a nap then I might go on to church. HA HA that did not happen. Luke had a mega blowout in his clothes then as I was changing him he peed all over his own face and me, then when I picked him up he threw up all down my dress! So, no church, no pretty pictures, and no fun memories of Luke getting his first Easter basket! Oh well, there will be many more Easter's and most importantly we are able to LIVE because He died!

That's about all that has been going on around here. We are headed to Longview tomorrow to see the family. Either this Wednesday or next I will be taking Luke to see his derm. His feet and hands look terrible and will not heal no matter what I do. His feet especially are so frustrating. Every time I drain them they are puffed back up again the next day. He has also been getting more blood blisters lately. I can tell they are hurting him some and that concerns us. So off to Dr. B to help us out!