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.

a lil' of this and that

We had a great Thanksgiving here in Houston. My mom, dad, Anna, and Kelsey came in town to celebrate at our house! It was a relaxing few days with the fam.

Luke has been doing great! He has 'slept' through the night for 10 nights in a row. (by slept I mean...some nights he still cries but I have not had to go in there once...he will cry himself back to sleep! yay for me being "mean" :)) His appetite has INCREASED since the night sleeping! This is great news for any baby, but especially for our special one! :) He has not cried ONCE while taking the bottle in the past 2 weeks! He is still spitting up a lot with quite a few 'total bottle throw-ups." We are hoping this is due to his reflux and not EB. His total ounces per day are where they should be. Now we are back considering putting off the scope again. It is still on the TCH schedule, but we are able to cancel up until the last minute. Like I have mentioned before, Luke WILL have to be scoped at some point due to his disease. The doctors need a starting point because most likely he will be scoped more than once in his lifetime. We just can not let ourselves say yes to something that could potentially make things worse for a 3 month old when he is thriving like he is. The scope procedure can be done pretty much anytime so we are thinking about waiting until he shows more signs of needing it now that he has been doing so well. We were told that Luke will need to prove himself...well...with the BIG hand from our BIG God and all of the people covering him in prayer, Luke is showing us all how strong his little self is and how much of a fighter he is! Greg and I are amazed at how much his eating has improved from just a few weeks ago. Thank you from the bottom of our hearts for the prayers.

As far has his blistering goes...they are still popping up rapidly. The pictures show the ones that are healing on his face. He also has 3 small ones on his legs and still has the usual ones on his fingers and toes. I am praying the ones on his legs do not get worse. I DO NOT want to have to mummy wrap him. It makes me sick to think about his EB getting that severe. Dressing his body will be VERY time consuming (the derm. told me it can take up to 2 hours if his body were to be covered with blisters!) The reason for the wrapping is to prevent infection and reduce pain. So far he is doing great. Nothing looks like it needs to be covered. We just keep the ointment on them and pray a lot! :)

I'm sure many of you know that all firsts are special with a new baby. This was an extra special Thanksgiving with Luke here to be a part of it. We have SO much to be thankful for.

Luke's stats and more!

We have had a busy week around here! We went in to see Dr. J. for our big 2 month appointment...with shots! He only gained 4 ounces this week, BUT, (drum roll please) Luke was in the 70% for weight!!!! Dr. J. had to re-check the stats to make sure he was right! We both could not believe it! It was so sweet...right after telling me the news, he says, "good work mom, dad, and God!" We love Dr. J. Obviously we all know that EB babies/children can fall down the growth curve at any point, but we are celebrating for now! Luke was in the 93% for height! He has really been looking long to us lately, so that did not surprise me!

We went to see our derm. Dr. B. on Wednesday. Lindsay and James Thomas had an appointment at Texas Children's too, so Luke and I headed up there early to have lunch and sit with our besties on the 14th floor before we made our way to the 8th for our appointment. Who would think I ever would be having to go to TCH with my baby let alone be there with my dear friend and hers...AT THE SAME TIME!? We serve a BIG BIG God who has plans far greater than I ever imagined.

Dr. B. was so happy to see us again and Luke was really happy to see her too. He smiled at her just about the entire time! Precious. I love his innocence. We learned some new wound care tactics that will help now that he is getting blisters on his face. We also learned about a few EB specialists across the nation that we will probably go visit in the future. I also learned that EB kids typically are smaller than others (weight) due to needing more calories and being weird eaters so Dr. B. was super impressed with him currently being in the 70%! Overall, it was a good visit. I feel so blessed to have wonderful doctors who seem to care so much about Luke.

Dr. J. gave us the okay to try to get Luke sleeping through the night. We tried it for the first time on Wednesday night...sort of. He woke up at midnight and Greg went ahead and fed him because we knew he had not eaten a lot during the day. He woke up again at 4 and I gave him a 25 minute crying allowance. He cried for 20 then went to sleep and didn't wake up until 6:45! 12-6:45 wasn't bad considering he had not had a great eating day prior. Last night (Thursday) we tried it again and he did GREAT! I fed him at 8:30 but he did not go to sleep until about 10. He woke up at 3:30 and I mentally gave him another 20 minute crying allowance...and he was back asleep in 15! He slept until 7:40!! 8:30-7:40 with no food! We'll see how tonight goes...

We will have to go back in for a weight check after doing the 'cry out' for a week to make sure he isn't dropping. Dr. J. also said to feed him in the middle of the night if he has a terrible day of eating.

Stayed tuned for another post (with pictures)...we have birthday parties this weekend, Auntie Anna and Uncle Marshal are coming in town, AND we decorated for Christmas!

EB

I finally did some more dreaded research on our precious baby's disease. www.debra.org

I HATE doing this...but it has now been 6.5 weeks since his final diagnosis and it's time I come out of denial. Everyday that has gone by I look for signs of healing...signs that he is getting better. He is not. The reality is that Luke was born with a lifelong disease. (we are not giving up on a healing miracle though) Everyday is different...some much better than others. He has been taking in more ounces over the past week which is great news, however, he is starting to spit up A LOT more formula AND mucous. (sorry gross) This "mucous" is not a good sign. We were warned about this. It could mean there are in fact strictures of some sort forming in his esophagus. :( I am almost 99.9% sure we will go through with the scoping. My gut tells me it needs to be done. I keep trying to push this feeling away making up plenty of excuses to not do it, but there have been too many signs telling us to go through with it. Maybe God is reminding us that this is His plan and we are to put ALL of our trust and care in Him for our Luke.

We went in for a weight check and he had gained 10 ounces in 13 days! Another praise! He is now a whopping 11 lbs. 15 oz. That sounds like a lot...here is what a mom of an EB baby wrote from her blog explaining weight/nutrition with an EB baby...


"And just to clear things up for those of you who have just begun reading or don't know much about EB - You may think I'm crazy for talking g-tube for a (previously) 17 lb 11 oz eight-month-old. And if he were a "normal" baby, we would be. But the problem is not how much he weighs. The problem is with his growth curve. Any time he starts falling off his growth curve (and a month without gaining any weight was doing that), we have issues. There's a lot to consider with EB, but nutrition is #2 (I consider #1 to be infection). Like I said in an earlier post, once EB kids get behind, it's a real struggle getting them caught up. They need MANY more calories than "healthy" kids, and their bodies require lots of EXTRA to heal the blisters they do have and to regenerate new skin. Healing takes a lot out of you."

in case you are interested...her blog is www.patriceandmattwilliams.blogspot.com

Luke still has blisters forming on his chin. There have been 3 so far...the newest one is in the corner of his mouth. It's tiny though so hopefully it won't affect his eating!

Just a little update! Like Lindsay mentioned on her blog once...blogging can definitely be therapeutic. After reading so much last night, I needed to blog! Greg and I are obviously so in love with our little boy and it literally makes our hearts ACHE so badly to know this innocent life has to deal with so much. I wish I could trade places with him...honestly I do. Thanks again for the continuous prayers, letters, encouragement, and sweet notes!

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December 10.

32 days for Luke to prove he is not ready to be scoped. We are on the OR schedule at Texas Children's for Luke to be scoped December 10 at 7:30am. If he continues to eat over 20 ounces with little fussing and little spit up for the next 32 days we can postpone the procedure. Yesterday was not a good eating day as far as the ounces and spit up goes, but hey, that is only one day. Today he is doing better so far! I am so scared for our precious babay to go through this. SCARED! We will have to stay at least one night at TCH for him to be monitored. Have I mentioned before how much I loathe hospitals...especially when it is our tiny baby needing to be there.

A little more news...he has gotten another blister on his chin. I get a sick feeling in my stomach when I see these ugly reminders of his disease on his little sweet face. I am trying to change my prospective on this. Maybe these blisters need to be a reminder of the One who delicately made Luke...that Luke IS extra delicate and EXTRA special...that he is being lifted up by so many for healing possibly bringing more people to God...and mostly a reminder to be thankful he doesn't have a worse condition. He is able to smile and communicate with us and if you are a parent, we all know what one little smile can do! :) I still haven't lost hope for no more blistering on the rest of his face and mostly for complete healing!

My sweet friend Amanda Yocum sent me a wonderful devotional book. I flipped ahead to DECEMBER 10...and oh my:

"Make Me the focal point of your security. Instead of yearning for a problem-free life, rejoice that trouble can highlight your awareness of My presence. Accept the value of problems in this life, considering them pure joy..." "When your private world feels unsteady and you grip My hand for support, you are living in a conscious dependence on Me."

let's get a second opinion, Lindsay's bday, and Halloween

The weekend started out with a visit to a new GI doctor at TCH. What an experience it was! I had to go alone this time because Greg has a job to hold up :) I knew Luke had a stinky diaper when we got there, so I thought I would change it quickly before we were called back. Right when I got everything out to do the change, his name was called. I scooped everything up in my arms, including Luke and headed toward the door when I felt some nasty warmth on my arm. Oh dear. Luke had a mega blowout...the biggest one ever. It was soaked through the entire leg and back of his outfit. (which was super cute and weather appropriate) Thank goodness the nurse was sweet and helped clean him up (an entire pack of wipes - no lie), rinsed out his clothes and put them in a plastic bag to go! I knew I had a onesie in his diaper bag, but little did I know it was entirely too small. I was super sad that our new doc. was going to have to meet Luke looking like this..seriously who would dress there baby in a cheapy short sleeved onesie (it was cold outside) that barely snaps...it pulled down so far you could almost see his full chest. Oh well...there was no other option.

Dr. L was very prompt in seeing us. We had a nice long conversation about Luke's condition. Basically he made me feel a whole lot better about doing the scope. He said that TCH is one of the only hospitals that has neonatal scopes. They are super tiny. He seemed rather confident that he could do this procedure without blistering Luke and that he would not biopsy his insides. He said that out ENT doc. still wanted to be in the OR to take a look in Luke's airways since he would already be under anestethia. I left the appointment feeling a little more at peace with the decision to go ahead and scope Luke. THAT WAS FRIDAY... I don't feel that way anymore.

On Monday, our nurse Susie was babysitting Luke. She said that there was red blood in Luke's spit up. I texted our pedi. Dr. J telling him about the blood and asked if I should be concerned. He texted back saying no and that he would call soon. While waiting on Dr. J to call, the GI doc called. I ended up telling him about the spit up. Without any questions, he immediately said the blood was probably coming from an ulcer or blister. He seemed more aggressive in wanting to book the OR. He also said that he was not convinced Luke even had reflux! WHAT!? I SAW the reflux myself on the upper GI!!! LONG STORY short, when Dr. J called be back about the blood in the spit up, his first question was, "has Luke happened to have a cold?" ME: yes
Dr. J: have you been bulb suctioning a lot
ME: yes
Dr. J: oh I bet the blood is from doing that too much. It is probably coming from above his esophagus. Bright red blood would not be coming from his stomach.
ME: THANK YOU FOR ASKING THAT!
After talking with Dr. J about the GI doc ... we decided to get a second opinion from an older, more experienced GI at TCH. Dr. J reminded me that our one goal is for Luke to eat better and continue to gain weight. He doesn't think that doing the scope tomorrow or in a few months makes a difference. We all know it will have to be done...but I just want Luke to grow a little before putting him through all of that!

Friday night, Julie and Mandi GRACIOUSLY offered to babysit Luke and James Thomas so we could celebrate Lindsay's birthday! THANK YOU THANK YOU Mandi and Julie for taking time away from your own families to watch our little boys! We had a wonderful evening eating LOTS of food at Maggiano's! Happy Birthday Lindsay...I am so THANKFUL for you!
Saturday night we went to a Halloween party at the Chambers house! It was hosted by the Chambers and the Garretts. It was so fun to see all of the kiddos dressed in their costumes. Next year will be more fun for Luke...we can trick or treat!

One more update...Luke has gotten 2 new blisters on his toes, 2 new ones are forming on his fingers, and UNFORTUNATELY, there are 2 on his precious CHIN!. I have been so hopeful for no blisters on his face. I pray no more form near it!

I am so thankful for our precious baby! I still am praying for a miracle of complete healing...thanks for praying with us!

Luke gets his first C+

We went to our pedi., Dr. J, yesterday for a weight check and discussion on Luke's eating. It seemed like we were doing so much better with his eating after we got home from the hospital. He would eat about 3-4 oz. per feeding. The last few days have gone downhill. It seems like most of his feeding he is only taking about 2-2.5 oz. and is still fighting almost every one. :( Dr. J says that Luke should still be gaining about an ounce a day. He only gained 4 ounces this week...a C+ according to the doc. We have been trying to put it off as long as possible, but it is time to see the GI doctor at Texas Children's. Luke should be going uphill, not down. Dr. J thinks GI is going to want to scope him ASAP. Who knows what they will find. Supposedly a "normal" baby with severe reflux has some eating difficulties and an irritated esophagus...give this to an EB baby...yikes! Luke's tissue internally is just as sensitive as externally, therefore, constant acid irritation can cause big problems including a potential build up of scar tissue down him thus making meal time really painful and challenging. I asked Dr. J what he thinks would happen if this is what is found. He explained that sometimes a patient might need to be on a feeding tube (GI button) for a while to give his insides to heal. Of course I want the best for Luke and for him to be pain free...but a FEEDING TUBE seems so scary. He would have to go to therapy to keep remembering how to eat! We will just cross that bridge when/if we get there. I am waiting on Dr. J to call and let me know when our appointment with GI is...I am supposed to find out today. More on that later.

We also visited the pumpkin patch yesterday with our friends. Mandi and Avery went, Julie with Jacob, Hannah, and Elizabeth, Ann with Hannah, Ellie, and Benjamin, Autumn with Oliver and Wyatt, and Lindsay with James Thomas. Afterwards, Julie had us over to her house for a yummy lunch and pumpkin painting. She is so creative! Maybe next year Luke can paint one! We are definitely making this a tradition!

he HAS to prove himself

...that is what the doctor told us on Thursday. Luke's biopsy came back from the second reading and his exact type of EB is now labeled "inconclusive." (it seems like we have been waiting on this phone call for FOREVER!) The first reading said his condition was pointing toward the Simplex type of EB, however, after a second, more detailed reading, this does not seem to be the case. The good news is that it is not necessarily pointing toward the Junctional type either. (this type is SEVERE) At first I was really disappointed to not know what to research and what to expect from his disease, but my dad said it best, "I believe us not knowing his exact type is a blessing. God IS going to heal little Luke, performing a miracle, and knowing all of the details are not necessary." I am going to live on this for a while.

I have been saying what a fighter Luke is....well, now he just has to prove himself. We are just to monitor him closely and make sure he continues to gain weight. There is no cure or 'treatment' for our baby's disease...just wound care and a close eye! Day by day this disease is NOT going to win...it can't. We are just getting to know each other :)

I talked with our pedi. on Thursday too. After realizing that he is eating MORE but not BETTER (he still cries a lot during feedings) we are to follow up with our new GI doctor (THANKS TO THE GARRETTS) in 2 weeks. Dr. J said that there could be scar tissue building up in his esophagus from his reflux. This can act as a stricture obviously effecting his breathing and eating. He thinks that the GI doc is going to want to do the scope procedure sooner than later. Please pray this is not the case. We are NOT ready for this. We hope he starts taking bottles better at most feedings. As of now, he has about 2-3 out of 8 "peaceful" feedings a day.

On another note, we are currently visiting my family in Longview/Dallas. Luke has gotten to meet so many of his family members. He has gotten some good bonding time with his auntie Anna, Kippy, and Papaw. I think I went 2 days without changing a diaper! Thanks Anna and Mom. Unfortunately, he has had the worst couple of days. I think he must be out of sorts being away. He cried nearly the entire day Saturday and a lot on Sunday too. I know the traveling will get better with age...it better! I am so thankful to have such a prayerful family. Luke is being lifted up by so many...SOO many. For those who don't know, my dad started a worldwide ministry a few years ago. www.christtotheworld.com I am pretty sure Luke and James Thomas are being prayed for all across the WORLD! Amazing. Dad said that if Luke and James Thomas are healed with a miracle, his team of writers from the ministry are all set to write these boys' story....that God can still perform miracles just like He did so long ago. What a time that will be...that people will be brought to Christ through our sweet babies.

I have not captured many pics while being here. I will take some today and post them soon! Sorry for the long "wordy" post. :)