weight check and more

We are so thankful that our besties are home. Please please please continue to pray for them. This is a not an easy journey. They mean so much to us and it literally brings me to tears to see them go through this.

We went in for our weekly weight check and Luke has gained 8 OUNCES! He is now a whopping 10 lbs. 15 oz.! He is obviously eating MORE but still fights through a lot of feedings. I am still hopeful that this is the reflux causing the pain and that his reflux medication just isn't working that good...that the pain is not coming from any type of internal blistering or damage. As long as he is gaining, we can prolong putting off the scope procedure. We are trying so hard to take Luke's disease a day at a time. It's the only way. All of the doctors have told us that EB patients, especially babies, can seem to be doing perfect and can "turn on a dime."

We had been doing good with no new blisters and then a couple popped up yesterday( I know they are not going away, but after almost a week with nothing new, I can't help but to have hope. We are so thankful that they are still mostly on his fingers and toes and every now and then on his elbows and knee. I am praying God will continue to protect his little face and organs!

Most of you follow the Garrett's blog and have read what she wrote about the GI doctor at Texas Children's that is willing to take over Luke's case...GREAT NEWS! He knows about EB, but more importantly, he said that the head of the GI department would be the one who would be doing the actual scope procedure and he happens to know even more about EB and has done it before on EB patients! This is very comforting news for us because soooo many doctors are not familiar with this rare disease. (our pedi says this is the first and most likely the last case of EB he will ever see) I can't say it enough...GOD IS DOING SOMETHING HERE! I don't' believe this happens by coincidence. Also, our pedi. happens to know these doctors too and told me that they were great! Speaking of pediatricians, I have to say that I am very impressed with ours and the entire practice. They are all (5 in the practice) proclaimed Christians. Both Luke and James Thomas go to this practice and both of our doctors have called to check up on us and told us that they are praying for our boys! It is refreshing to be in a city of 5 million and be in the hands of caring, personable doctors. Let me tell you, Luke and now James Thomas are popular babies with Bluefish Pediatrics!

I am calling the dermatologist today to see what the hold up is on Luke's biopsy. We are supposed to be getting the final diagnosis on the type of his EB soon...more on that later. UPDATE: right after I typed this I got a text message from our pedi. Dr. J. YES, you read that right, a TEXT from his cell phone letting me know that he called Texas Children's this morning to try and get the biopsy results for us and to give Luke his love. I know God has put us in the hands of good doctors. Praise Him.

Thanks again for all of the love, support, and prayers. I always smile when I hear that someone is praying for our sweet baby! Gotta run...Luke is starving!

PS..THANKS TO AMANDA YOCUM for the sweet 'prayer buttons!'

pics...

Here are the pictures that I meant to put on the last post... (for those not familiar with blogger...scroll down and click older post to see previous posts)

so much to say...

It has been crazy here on Rincon Dr. I did not have a computer in the hospital, therefore, no updates on the blog!

Before I begin updating the life of the Jones family, I have to write about our very best friends. Most of you know about sweet James Thomas Garrett and all that he, Lindsay, and James are going through. Please pray for them. Lift them up in every way...especially tomorrow morning as JT will be undergoing a procedure to test his bone marrow. PRAY FRIENDS...for the doctors, for PEACE and COMFORT for Lindsay and James, for no pain for little James Thomas, for a positive and hopeful outcome, that James Thomas IS making red blood cells on his own, and that the whole experience goes smoothly. My heart physically aches for them. The days after finding about Luke's disease, I remember telling Greg that I hope no one I know has to experience these feelings. Who would have thought our best friends...who we have endured so much together already, would have to go through a similar situation. WHY WHY WHY!? Lindsay said it best..."it makes me believe in God more!" I completely agree. He is doing something...something surely to be SO BIG. Sweet James Thomas and Luke already have so much in common and they have NO idea! We love JT so much.

It has been so long since my last post...I will try to be brief in the details of the past couple of weeks...Luke was admitted to Texas Children's last Friday for 'Failure to Thrive.' He was not eating well and not gaining weight. Not gaining can be related to his EB. There can be internal blistering on his organs. They did an upper GI test and it did not show any restrictors in his esophagus (praise #1) but did show severe reflux. We have been on reflux meds but realized Luke needed a much higher does. He also saw an ear, nose, and throat doctor who stuck a camera down his throat to look at his voice box. It is pretty irritated but nothing serious was found there either. (praise #2) After much discussion, our GI and ENT doctors wanted to do a procedure under anesthesia...sticking a scope in both ends to see his airways and his organs looking for any type of restrictors and blistering. This can be a very risky procedure as he could blister all the way down from the scope. Lots of details later, our GI doc. talked with our dermatologist to confirm the risks related to his EB. Ultimately Greg and I had to make the final decision, so we decided NOT to go through with it yet. We wanted to bring him home and see if he can thrive on his own. He is currently on a higher calorie formula and a higher dose of reflux medication. We go to the pedi frequently for weight checks. As of now, Luke is gaining and eating a little bit better (praise #3). We have follow ups scheduled with our team of doctors at Texas Children's to monitor his condition. It is not uncommon for EB patients to have eating issues. Many people battling this disease will go on and off feeding tubes throughout their life. We just want to wait as long as possible before we go inside and look! He is so little!

I continue to be in awe of Greg. I can't lie...it has been stressful around here. He has done an amazing job at balancing work, me, and a sick baby. He continues to help me so much. He embraces me when I cry and is forgiving when I mess up. Thank you my love. You are more than I imagined in a husband.

I continue to feel overwhelmed with the wonderful group of friends and family we are surrounded by. I apologize to so many who I have yet to get back to. I promise I will. NOTHING has gone unnoticed. Thank you to all who have come and helped, brought dinner, brought a gift, called, texted, emailed, and facebooked! We could not get through this without you. NOT AT ALL!

Here are a few pics from our time at Texas Children's and the last week or so... A special thanks to Lindsay who is great at capturing moments. I brought my camera but I rarely use it, so I think most of the hospital pics were taken by her! UPDATE..pics won't upload...I will try again tomorrow.

Luke's latest - 1 month old

A quick update on our boy...

We went to the pedi. yesterday to get his stitches removed and for a weight check. I thought he had gained for sure and would be well over 10 pounds...he was exactly the same as last week! ugh. At least he did not lose. Praise for that!

Due to his eating and continued tummy issues, Dr. J. called Texas Children's ASAP to get us in to see a GI doctor. He thought with Luke not improving too much after being on 2 reflux meds and a really mild formula, that the EB might be what is affecting his eating. We HOPE not. If that is the case, Luke will have to be scoped and with him being so little, this can be a dangerous process and could also cause blistering all the way down. We are scheduled on Tuesday to do a upper GI (where he will drink barium and be x-rayed) to see how much damage there is down his esophagus. We are anticipating damage due to his hoarse cry getting worse. After that, we will meet with the GI doctor on Friday and go from there.

Dr. B. (our dermatologist) called yesterday with the biopsy results. She says that his EB is highly favoring the Simplex type. We have been doing quite a bit of research on the various types of EB. Of the 3 types, there is not one that is necessarily better than the other. Each one has subtypes...some better than others. His biopsy is being sent to another specialist to see specifically what type of the simplex and give us more info. After discussing this with Dr. B. and letting her know Luke's condition as of now, she has called an Ear/Nose/Throat specialist and we are going TOMORROW! She seemed concerned that he is now wheezing a bit and that his cry has gotten worse. Respiratory problems can be linked to EB.

So now we have a team of doctors for Luke. (Pedi/GI/ENT/DERM) I have read this is normal for EB patients. We are praying to get the GI and respiratory issues squared away. These can be potentially life threatening. Thanks again for the prayers and numerous letters, emails, and comments. I am feeling a bit more at peace...knowing that nothing is in our control...it's in His. I love this little boy more and more everyday. He is quite the fighter and is already getting used to us taking care of his little hands and feet!

a special baby

What a day. Thank you for so many sweet comments on facebook and via email. I thought this would be the best way to let everyone know what is going on with our Luke.

On about day 4 of life we discovered a blister that had popped on Luke's heal. We thought it was possibly from the heal prick they do in the hospital, and that it had just blistered. Within about 24 hours, we started noticing blisters pop up rapidly on his hands and toes. After 3 pediatrician visits and 3 dermatologist visits, Luke has been diagnosed with Epidermalysis Bullosa (EB). It is a skin disease that he will have for the remainder of his life. You can google it if you want, but in a nutshell there are 3 types of EB ranging from mild to severe and Luke's is most likely somewhere in the middle. His body was not formed with the "bonding agent" to hold the layers of skin together like most people have. How did he get it? Either Greg and I carry the recessive gene (that we don't know of) or it was by chance that a cell mutated in the womb and left that certain gene out. If this is the case...the chances were about 1 in 100,000. God has a plan...He has to.

Greg and I will be doing genetic testing to see if we carry it. If so, Luke will most likely be an only child as we would not want to put future children through this. This is a lot to digest at the moment. Luke will be a special needs baby...anything that causes friction to his skin can cause a blister. (playing sports, instruments, crawling, etc) As of now, the blisters do not cause him pain unless they pop and raw skin is exposed and rubs on something. It is hard to keep a newborn 'still' :) Greg and I are learning how to care for the blisters...keeping them wrapped up and covered. (thank goodness cool weather is coming!) He also has a few in his mouth and throat but they don't seem to bother him. (the feeding issues are coming from tummy pains)

Today the dermatologist at Texas Children's did a biopsy of a blister on his elbow to determine the exact form of EB that he has. We are hoping it is more mild than they think it is. I have to brag on the little guy...with a needle of local anesthesia, biopsy, and 2 stitches, HE DID NOT CRY. yes, our 3 week old did not cry during all that...yet cried while the doctor looked at the blisters and during a diaper change! My first thought was that God was holding him during the whole thing being the Great Physician He is numbing the pain. He is home sleeping soundly now with a little red bandage wrapped around his 2 stitched in his elbow.

As Greg and I were leaving the hospital, it only took us seeing one other child with way more severe special needs to realize we have it good. So good. No one wants to watch their baby go through this. We are sad for him...that he might not have as much opportunity as other children, but thankful it's not worse. He is a fighter already and we love him so much. This is his normal...a new normal. Who knows...maybe he will prove us all wrong and get better! There is always hope.

Overwhelmed.

Overwhelm: 1. to pour down upon and cover over or bury beneath 2. to make helpless, as with greater force or deep emotion

These past 3 weeks have been overwhelming. Yes, having a newborn can be overwhelming and certainly a sick little one is overwhelming too...but I have been mostly overwhelmed in a good way. It is amazing the amount of people that care. I can't stop thinking about the MANY people who have said they are praying for our precious Luke, Greg, and me. God promises hope, and every time I think of everyone who is lifting us up to Him, I am renewed with hope...which these days is what we are living on. Hope that Luke is going to be just fine. Hope that Greg and I are going to be just fine. Hope that these hard days are soon to be behind us. Hope that Luke will be a healthy happy little boy soon. I just keep praying that God continues to bless those who care so deeply for our family and who have spent precious time in prayer for us. Thank you. Not only are the large number of people praying overwhelming, but there have been so many people offer to help us. Whether it's friends bringing dinner, offering to babysit, going with me to the doctor, bringing a Sonic drink, or offering to grocery shop...I am thankful. A special thank you to my sister Anna, who has listened countless times to me complain, worry, and ask so many medical questions, and come a weekend to help...I love you.

not sure if he will read this but Greg has been amazing. He has been my rock. I can't even type this without crying. I love him more than I ever thought I was capable of loving. He is and always will be my first priority. Prior to having a baby, I would always say that I could handle getting up in the night and being the primary care giver for our baby while Greg is working. That's what a mother is supposed to do, right? I have failed poorly. With so much grace and no complaints...Greg has stepped up where I can't. He gets up during the night for hours upon end with Luke and still manages to work. He has taken so much time away from work to help me, go to the doctors appointments, arranged help so I can sleep, searched the city of Houston for a pharmacy that has the right meds, let me cry many, many tears in his arms, and still tells me I am a good mother. He has so much poise. Thank you my love.


This is what I am talking about... an email with so much heart from my DEAR friend Elizabeth who has not even met little Luke..yet! (hurry and get here from Ft. Worth!)

sent a few days ago: I keep asking God - WHYYYYY??? If He gives us hands and feet to serve Him - WHY are precious Luke's covered in blisters? When friends go through challenges like this - I question how they could possibly remain faithful to God - HOWEVER can you look towards Him when he has allowed something like this to happen to a precious babe? I question how I would be able to remain faithful in such a time - I don't know that I could? When I was praying for Lukey this morning - and asking God how can someone be faithful to Him when their precious is hurting - He reminded me that even when WE aren't faithful...HE is!!! That song "Great is Thy Faithfulness" came to mind. I feel like it is applicable to you and Luke...because I know if I were in your situation, the ONLY way I could handle things is to take it one day at a time - which is perfect - because as the song reminded me - His mercies are new EVERY MORNING!


I bet you know the chorus or remember it from church...as you sang hymns like we did in the Methodist church:


Great is thy faithfulness, O God, My Father
There is no shadow of turning with Thee.
Thou changest not, Thy compassions they fail not;

As thou hast been, Thou forever wilt be.
Great is Thy faithfulness!


Great is Thy faithfulness!
Morning by morning new mercies I see.
All I have needed Thy hand hath provided;
Great is Thy faithfulness, Lord, unto me!


So then of course, I am a dork - and had to look up the background of that hymn...and found that it was written from Lamentations 3.


I am praying that you and Greg FEEL God's love and compassion, and KNOW that He will never fail you. I am praying for Luke - and for the Doctor's that are taking care of him.

Lamentations Chapter 3
19 I remember my affliction and my wandering,
the bitterness and the gall.

20 I well remember them,
and my soul is downcast within me.

21 Yet this I call to mind
and therefore I have hope:

22 Because of the LORD's great love we are not consumed,
for his compassions never fail.

23 They are new every morning;
great is your faithfulness.

24 I say to myself, "The LORD is my portion;
therefore I will wait for him."

25 The LORD is good to those whose hope is in him,
to the one who seeks him;

Greg and Luke

I only have a second...but you will have to excuse the blog lately. If you haven't noticed, Greg has taken over! (without my permission :)) He is the one who changed everything on here (sorry Amanda, once I am back at it I will need a new lift!!) I am glad he likes to blog but sometimes I'm not sure he knows "blog etiquette!" A big apology for the awful, inappropriate picture that he put as our header! He is learning! :) I love him so much anyway!

Please pray for Luke. He has had a rough start to life. He is battling some severe blisters on his hands, feet, and mouth/throat (making meal time brutal for all of us!) We have to keep his feet and hands covered at all times. We have only been out of the house for doctors appointments. He is also pretty colic-y. He is slowly getting his nights and days together...sleeping between feedings at night. It takes him a long time to calm down and fall asleep after each feeding though. I know he will continue to get better...thanks for all the prayers, love and support.