4 month well check and a few pics

Luke had his 4 month well check up last week with Dr. J. (2 weeks late) Dr. J. was VERY impressed with how well Luke is thriving. Praise God! Here are a few stats from our appointment:

WEIGHT - 16lbs 7oz - 75%

HEAD - 90% (his head seemed to have grown a lot from his 2 month...which he was in the 75% :))

HEIGHT - 26 1/4" - 90%

My sister Anna (a pediatric nurse in Dallas) has been telling me since Luke was born that his head looks tilted a little to the left. When she was here over Thanksgiving she said he might have a mild case of Torticollis. (it is a tightness of one sternocleidomastoid muscle which can usually be treated with stretching) Then Nancy (James' mom - a pediatric PT) was here and thought he had Torticollis too. She taught me the proper exercises to do on Luke's neck to help get rid of it. Dr. J. confirmed the Torticollis while at our appointment and told me to do the stretches at every diaper change. Luke doesn't seem to mind the stretching too much as long as I am singing to him while doing it!

We have had a great few weeks. Luke is looking great these days so I am trying to savor the moments before his face gets bad again. His thighs are healing good with not too many new blisters forming. He has a few tiny ones forming on his calves and unfortunately in his bottom crack! :) I am not sure how to care for those. If I drain them I am afraid of infection. (any EB moms reading this I would appreciate some advice!) So far they haven't caused any problems and are not growing at the rate most do. His fingers, especially his thumbs are a different story. They go from bad to awful then back to bad. I'm sure it doesn't help that he might be starting to teethe because he always has his hands in his mouth! As far as his feet go...they look about the same. The sole of one foot looks terrible and I think might be a bit painful too. Luke is a VERY tough boy though. He will let out a tiny whimper here and there when we are messing with the blisters but other than that I think he is getting used to it. I'm sure God has given him one heck of a pain tolerance! Greg and I always talk and sing to him while doing our care routine. Nancy gave him some cute CD's that say his name throughout the songs. I love the Jesus music one...it is so so sweet. We play those while dressing him after his bath as well.



We tend to stay pretty busy during the day. I am really trying NOT to take advantage of having close friends near by. Lindsay and I see each other everyday and the boys are really starting to notice one another. I can't wait until Luke can sit up so they can really play together. We have enjoyed many walks together lately since the weather has been so great.

Here are a few pics. The last one is from today before we left for church. I had to show off his cute outfit his Kippy gave him. He spits up a million times a day so it is hard to put him in nice clothes most of the time!

genetics appointment, updates, and PICTURES galore!

beware of a long post!

Last Monday we had our first genetics appointment at Texas Children's. We liked our doctor (yay!) and learned a few new things. They took lots of blood from Luke to be sent off to some special lab. Apparently there is only one lab in the US that does this kind of testing so we won't know anything for 6 weeks to 3 months! annoying! Here is what we are HOPING to learn from his blood work: a)what type of EB (it's about time!) b) HOPEFULLY the subtype c)possibly gene mutations and/or was it a random mutation or could Greg and I carry the gene (in which case more testing on us will happen) These are all BIG things to know. Each different type of EB has a different prognosis some of which extremely severe. Based on looks alone, our derm. thought it is junctional but we have also heard simplex. We also learned that even if it was a random gene mutation, there is still a higher chance of us having another baby with EB. Please pray as Greg and I will have big decision to make in the future about having another baby. More on this in a few weeks!

We had a great week with Devin, Diane, and Kelsey here. Unfortunately, I didn't get any pictures because of the missing camera battery, :( Our week consisted of eating a lot, go cart racing, ice skating, and a lot of relaxing and loving on Luke! Thanks for making the trip from Virginia Diane and Devin!

Here are some pics from Christmas in Longview: (as you can see, Luke's face is looking great! It is so weird how it seems to all begin to heal at once and then lots of blistring comes back at once.)


















Anna, me, and Luke after the Christmas Eve service. He was not on his best behavior for church!


The pictures below are of the room my mom and dad re did as a nursery in their house! It even had a Fisher Price nativity set up. Also, the bathroom had decor on the walls...it is so cute!

we are here...

It has been busy around here! I left my camera battery charging in Longview at my parents house so I can't post any pictures until it gets here! Just wanted to write a mini post. We had a wonderful Christmas with my family and now we are back in Houston. Greg's sister, Diane, and his nephew, Devin, and Kelsey are here for the week. Diane and Devin flew in Sunday from Virginia. Luke is still doing great! His eating is still strong; however, the blisters are in an outbreak right now. His face was healing so well just in time for Christmas (yay!) and now they are getting a little worse. His legs are semi healing. Overall, no complaints for the little guy! He was an angel in Longview charming everyone with his contagious laugh and sweet smiles. I have to brag...I LOVE how smiley he has become! It melts my heart so much. Lindsay made a great point...he is so happy even though he has to feel some pain from time to time with sores on his little body. I pray he stays happy and tough! My mom and dad re-did a bedroom upstairs into a full nursery! (I think it is nicer than ours) I took pics of that to post too. There is not a detail missing. Luke had everything and more to make his stay at his Papaw and Kippy's comfortable. He got a fun exersaucer from Santa! It is so cute to see him play in it even though he is still a little young for it. I also have a mini video of him grabbing at a toy for the first time. This might not sound like a big deal, but we have been concerned because some EB babies don't ever use their hands properly. He is not great at it and still keeps his hands in fists but we are hopeful he will be able to function with his hands. (it is common for them to use both fists to pick up things etc.)

I have a few video's to post later too. Anna got us a Flip Camera for Christmas! (thanks Anna!!!) I am working on getting a video of him laughing. Sorry for a boring post. I will post pics and video soon!

be back soon!

prayers for the Garrett's

Please take a few minutes to pray for our besties. They will be at TCH for some treatment most likely until Monday. We love them so much and HATE seeing them go through this. Pray for peace of mind and healing for sweet James Thomas.

decisions, decisions

Quick update...we did not go through with the upperlarynoscopy that was scheduled for this past Thursday. Both Greg and I could not let it happen. Dr. J our pedi and Dr. B our derm both fully supported waiting; however, our Gastro doctor still wanted to do it. That is another story. We are probably going to switch GI doctors soon and try to hold off until Luke is six months to do the scope. We still document every feeding so by six months we will have his "roller coaster" eating documented month after month to see his progression/regression. I felt at peace about cancelling the procedure for now, but Luke has had a few fussy feedings since cancelling (go figure!) and has spit up SO much! (he spit up 7 times during our shopping trip to Target...yuck!) I am still hoping this is due strictly to his reflux and not EB. He is still doing so much better than a month ago! We will be going in for a weight check soon. Our only mini concern right now is the fact that he is eating A LOT more and not 'plumping' as much as I feel like he is should. I know....based on pics he looks mighty 'healthy' but I promise it is all mostly in his cheeks! We're not too worried about it...we know he is growing...his clothes prove that!

Please continure to pray for the healing of his blisters. He is still getting so many on his legs and fingers. His face is staring to heal! Praise God for that!

I have taken some new pics. Will post them soon! Have a good day!

poor baby.

Ok, I know my posts go back and forth with good news and sad news. I guess that is going to be the reality of having a baby with an illness. But once again...writing about it helps.

The good news today is that Luke is still eating great! I think yesterday he had a record day with 31 ounces! Dr. J said we could temporarily take him off of high calorie and see how he does. So far so good!

On to the sad news. Greg and I are sick about Luke's blisters. He is now starting to blister a lot on his legs and arms. I have mentioned before how thankful we are not having to "mummy wrap" his legs and arms. Well, we aren't quite there yet, but I am so scared that is the direction we are heading. There is a big blister near his diaper line which is at risk for infection. We have been trying to just wrap his thigh at nighttime, however, it never stays in place. I guess that is why other babies are completely wrapped. It must help the dressing stay on among other things. The other blisters on his arms and legs are still little, which is good, but I can't figure out why they all appeared withing a few days! One foot and one hand look bad and seem like they are taking forever to heal. :( I am going to call Dr. B (derm) tomorrow to see what to do. If he eventually needs to be wrapped completely on his legs then we will probably need a home health nurse to come and help. I am not so good at it even after my mini lesson at the clinic! Dr. B assures me that we will become the experts. I would have never in a million years thought I would be an "expert" on dressing wounds! We are really starting to finally realize how sensitive his skin is. I was simply cleaning his ears the other night, gently with a q-tip, and by the next night he had a little irritation on his ear! poor baby.

He is so happy though. Praise God for that! He is talking so much and smiles all of the time. He has the sweetest little hoarse voice. Sometimes I get teary just watching him smile. Sounds weird, I know. I just hope he is always happy living with this disease. I want him to feel good about himself just as all parents wish for their children. We pray daily that other kids will treat him as a "normal" child. I know I am guilty of judging others for whatever reason, but I am learning quickly NOT to. God has already taught us so much through this valley. I can honestly say some things have been put into perspective. I care less about petty things and more about others. ( I still have plenty of petty things I should learn how to let go of...I'm working on it!) I told Greg the other day that I won't ever complain about having a blemish on my face. That is life and if all I have to do is look in the mirror a see a small pimple or two, who cares. Luke will have to see his body covered in "blemishes." I also am starting to do a better job at how I spend my time. I used to be so bad at thinking I have so much to do if only I could get Luke to sleep or content for a little while. Well these past few weeks I have become more aware of how precious our time together is. I wish I could pause this age. I feel like he starting to grow up entirely to fast! I got a sweet email from Mary Alice today. She has worked with children for a long time. Here is some encouragement she wrote

"After working with children with many types of disabilities in the public schools for about 25 years, I learned several things. (1) These special children develop a resilience and strength that one does not often see in other children their age. They are also kinder to others. (2) With the help of caring parents they fit in quite well in the mainstream population. You already have him out doing things with other children so his life will be socially what it would normally be. (3) When others know their medical situation, they are quite helpful and kind. I think the comment at the gym was made off the cuff and would not have been said had the person known the medical situation."

On another note...Luke is still scheduled for his scope on Thursday. Dr. J (pedi) said he was ok with us cancelling for now since Luke is doing so good nutritionally but Dr. L (GI) still thinks we need it. SOO, we are waiting to hear Dr. B's (derm) opinion. She is the skin expert! I hate to do something that will cause him to regress. We will just continue pray pray pray and see what God thinks.

Sorry to be "Debbie Downer" today. Thanks again for the continued prayers for our little one!

He is precious in His sight...

I got a little sad this morning. I was taking Luke in the gym and the guy at the front desk says, "whoa, he must have just eaten!" Confused, I just gave a little laugh. He looked at me like he needed a response, so I asked "oh sorry what did you say?" He said, "your baby must have just had a big meal." Still confused I smiled and walked away. OHHH then it hit me, duh, he was referring to Luke's blistering that is all around his mouth! He must have thought it was sweet potatoes or something! Why would I bring him somewhere with food all over his face?! ugh. I guess it's better comments like this are made now when he is so little and has no idea. It breaks my heart to think of something being said to him that will hurt his self esteem one day.

Luke is still eating like a champ! It's almost like we can't keep him full! This is a HUGE answer to prayer. HUGE! I mentioned a long time ago that there are a few big things that can be fatal with EB...one being NUTRITION. We take things a day at a time and for this day 'nutrition' does not seem to be an issue like it has been! woohoo!! We are praying he stays on his growth curve and continues thriving like he is! Also, he is still sleeping through the night! Gosh, who knew what a good night's sleep and some good eating could do for a baby! I know God is listening and caring for Luke :)

I second what Lindsay said about being so thankful for all of the love and support. An extra big thank you to all of our DEAR friends who sent us the spa certificate! We can't wait to use it and have a relaxing day together getting pampered! That was a wonderful surprise. Greg and I are still getting sweet cards. Checking the mail has become super exciting! Thank you for taking time to pray and write words of encouragement.