update of Luke........

Luke wearing my sunglasses. Jack and Luke at my parents house playing.

Luke saw a new gastrointestinal doctor a couple weeks ago and we LOVED him. He took time to really get to know Luke and his background and to really listen to me. Dr. F spent over an hour and half with us. He was happy with Luke's weight and wants to decrease the amount of fat in his diet! Even though Luke's weight isn't on the growth curve, his height to weight ratio is 50% on the growth curve! He said he didn't want to make Luke a short fat kid and keep adding pounds onto him just to get his weight on the curve! Dr. F was concerned about Luke's liver labs being slightly high the last 2 times they were drawn and we talked about other concerns I had. We had a whole bunch of lab done and an abdominal ultrasound done. Ultrasound was normal and most labs were normal.....except the liver labs. They were higher than the last time they were drawn and that concerns the dr. We have an appointment on Thursday with the ENT Dr to.discuss Luke's MRI and look at Luke's swallowing so while we are there we will swing over to the lab and get more lab drawn. Dr. F is doing what we have been asking every other dr to do-- checking genetics and other disorders!-- mainly the ones that affect the liver. Some of the tests will take over 3 weeks to come back but we are glad someone is finally listening to us and also realizes that something besides just not growing is going on.

Jack and Luke are doing as good as 2yr old little boys can do!! They are generally happy with a few melt downs a day--mainly related to each another and toy stealing!! They are talking up a storm and Luke loves to sing/sream now. They amaze me how much they know and how fast they can learn new animals or words or whatever it may be. Jack loves to be read to while Luke usually won't sit still past the 2nd page! But Luke will sit in a trance in front of the tv and Jack doesn't typically sit and watch. Jack runs around while he watches the tv. Luke has really become silly and tries to make you laugh during discipline. Jack is the lover and tries to give hugs and kisses when getting into trouble. It is hard to get onto a little boy who grabs the sides of your face and presses his mouth to yours for kisses when you are discipling them. We are going to have a hard time with them trying to charm their way out of trouble!

Maybe before Christmas I will get their birthday party pictures posted!!

Thanks for patiently waiting for.our postings and continuing to follow us and pray for us. As a mom and dad of two year old twin boys we need them! Also continue to pray for Luke and for answers to be found and that whatever is found be a simple fix! I know I ask a lot but God has proven faithful so we continue to keep asking!

Thanks--R

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Luke's day at the hospital

Luke spent most of the yesterday at the hospital. He was sedated and had an MRI/MRA - the MRA is a longer, detailed look at the veins and arteries. This was done to get a better look at the tight, swollen area that the ENT doctor saw when Luke was scoped. We hope to know some results this week, but may not know everything until we see the doctor on November 3rd. We hope the area is safe for him to easily go in and dialate without any problems. He was concerned during the scope that a vein or artery could be lesser against the tight area, which would require a more serious surgery to fix.

Luke woke up pretty quickly and was breathing fine on his own. Last time he was sedated it took a while for his pulse-ox level to get back to normal, so this time we brought an oxygen tank in case we needed it.

Luke also had his Medical Home Clinic appointment in the afternoon. He visits the clinic every 3 months, but they monitor his weight weekly, adjust his feeding/nutrition often, and this is the team who we call about most of Luke's issues since they see him the most and know him best.

No big changes. Now that he his feeding tube has been changed to a G/J, his throwing up is a lot better. We are leaving his calories the same, but since he has been tolerating feeds well, we will try to get more into him each day. We are also going to see a new GI doctor for a 2nd opinion. Luke still has a number of stomach issues that are not being addressed, so we will keep trying until we find someone who will listen and act on our concerns.

As Rachel promised, we will do our best to update more regularly. It has been an extremely difficult year and many things just do not get done. We will share some new pictures soon.

promise.....

I promise we have lots of blogs coming. Luke has his MRI tomorrow and then a doctors appointment after that. Pray it goes well and they find something that can be easily fixed. We will update tomorrow night about how it went. Thanks for the prayers!

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And the answer is....

We have no answer and more tests ordered! So here is how the day went.......

Luke and I (Rachel) checked in at the hospital at 6:30. Luke was fantastic and never got cranky. We rocked and watched cartoons as the many people came to assess him and ask me tons of questions. The ENT doctor came in to see how we were doing and answer any questions I had. Luke immediatley put his arms up for him to hold him and then blew him kisses. That is rare for Luke to warm up to someone so fast--especially someone he has only seen once before. The GI doctor came in and tickled Luke and had him giggling while she looked at him. All these things (and your prayers) calmed my nerves and left me peaceful about whatever they may or may not find. The nurse came to take Luke back to surgery and again Luke lifted his arms up for the nurse to pick him up. It was really cute because the nurse carried Luke back into surgery while Luke's monkey got pushed back on the stretcher!

ENT report:
1. Found a small cyst in his airway but since it wasn't causing issues and it was very small they left it alone. His lungs and airway looked fantastic.
2. They were looking for achalasia which is basically a muscle that stays too tight and won't let foods through. The ENT thought one of the muscles was a little tight but was vetoed by the GI doctor who was older and had more seniority. He didn't want to step on any toes but we might get a dilation of that muscle (by ENT) in the future if he still has issues with eating.
3. The doctor saw a pulsating area in the esophagus that is not normal. Luke is going to have to have an MRI to check his vascular system. The doctor thinks that there is a vein or artery pressing on the esophagus causing some of his issues. If they find something then it will be another surgery which can range from a simple laser-ing of that vein to a big cardiac surgery. We are waiting for the MRI to be scheduled and it will probably be a couple weeks before we can get it due to how busy Children's Hospital MRI stays.
4. Labs were sent to check for cystic fibrosis. He has had a negative sweat test before but the doctor wanted to get a second opinion from the genetics lab.


Here is the GI report:
1. He has several small areas of inflammation and a couple nodules in his stomach. It wasn't enough for the doctor to definitely say he has gastritis and start him on more meds but they were there so she did biopsies of a couple of those areas. She said that if they come back as gastritis then Luke will be started on some more meds on top of what he is already getting.
2. All of his intestines (the parts she could see) looked good and nothing looked abnormal. She also is sending out a bunch of labs looking for several things including celiac. We should know results on August 30th. She did mention allergy issues since he has several areas of eczema and we might need to do some adjusting of his formula since we already know he has a moderate allergy to milk (and he is on a milk based formula!).

Luke was his usual cranky post-anesthesia self and needed some medicine to make his stomach feel better after throwing up a couple times. He wasn't keeping his oxygen levels up on room air while he was asleep and was needing some oxygen. It wasn't very much oxygen and just while asleep. Luke has been off night oxygen for about 2 months but we still have all the equipment for sicknesses and just-in-cases. After MUCH convincing that we were more than comfortable with Luke's oxygen levels and needs, they let us take him home. We will do oxygen for a couple nights just to get him over this little hump and hopefully will be back to room air at night! After a good nap, Luke woke up very energetic and playful - even better than his normal self.

So how are Ken and I doing you ask? We are happy with today's results. There are many little things and still maybe a couple major things pending, but we feel that at least we are starting to make progress. We feel like we have broken through the wall we have been beating our heads again this past year. We don't have any definite answers yet but we should soon. I was so afraid Luke was going to go through all this and the doctors were going to come out and say "everything looked great" and we would have nothing to build on. There are other decisions to be made now regarding Luke and his tube feeds now that we have some ideas about what is going on but those are left for another night! Thank you so much for the prayers. I definitely felt them and Luke did amazing. We are very thankful to our family and friends that passed on our blog link in email and on Facebook because we appreciate every extra prayer we get! Thanks to Samantha for watching Jack and to Hannah and Jodie for being our "back up" babysitters if we needed extra help during the week! Thanks to my mom and dad for letting us come over and eat dinner with you so we didn't have to worry about that tonight. LOVE YOU!

We are off to bed soon as we didn't sleep much last night. We will try to do a fun blog next - sometime this week - with pictures from our vacation in South Carolina.

Tomorrow is the day......

We have been waiting for this to be done for a LONG time. I am all kinds of anxious and emotions. We have been pushing for this test for over a year and it is finally here. I feel like every recent decision related to Luke and future plans have been on hold until we know something from tomorrow's test. I am afraid they won't find anything and we will be back to square one. I am afraid they will find something that can't be fixed easily. I am anxious and scared and hopeful and every type of emotion out there!

Please pray for Luke and his doctors first and then you can squeeze me in. I think I am more nervous and worried about this test than I have been for any other procedure he has had. The reason being that this is a pivotal procedure in Luke's future. If they can't find anything, then nothing can be fixed, and we are looking at long term tube feeding.

If they can find something and can fix it, then we can let Luke heal and learn to start eating and drinking and working on a goal of getting his tube out! I am really okay if Luke wants to be a long term tube feeder but every mom wants the best for their child, the easiest road, and free from pain or discomfort. He is a healthy happy child either way but it hurts my heart to see him in so much pain every day. It hurts my heart for him to cry because he wants to eat and drink what we do and what his brother does and he can't have it because it makes him throw up every time. I want to take some of that pain and frustration and difference away from him! He has an amazing story and so much more life to add to it. I want this to be part of his story how God provided an answer and healing to his life!

Please keep us in mind tomorrow. We are checking in at Children's hospital at 6:30am and his procedure is to start around 8:30. We will update as soon as we know anything and have a little time to type! Keep this little face in your prayers:

Prayer Request

Hello all!
We are enjoying some time with Ken's parents right now in South Carolina.
Luke is up to 18lbs and 8oz! He is really looking good and catching up with Jack who is just over 23lbs.

Please pray for Luke on Tuesday. We saw an ENT doctor about 3 weeks ago and they did a quick look down his throat. They saw that Luke's vocal cords were very swollen, inflamed, and covered with nodules. The ENT dr said it was most likely from severe reflux and added ANOTHER medication to take at night. The ENT dr also wanted to do a better look at Luke so he is scheduled for "surgery" on Tuesday (8/16) to look at the full length of his esophagus. As bad as this may sound we are praying that they find something! The dr has an idea of what might be causing Luke's problems with swallowing and all his vomiting and we are hoping that the doctor is right. If the condition is found then it is a surgery to fix it and then Luke should be able to start eating and drinking without problems. It has been hard on me to pray for something to be wrong with your child but we want answers and we want something that can be pretty easily fixed.

The Gastrointestinal doctor is also going to look at Luke on Tuesday so he will be getting a full work over! Please pray that Luke does well with the sedation, they find the condition they are looking for, and they can do the surgery to fix it on Tuesday too. Pray that he heals fast and is able to start eating and drinking and we can get the feeding tube out ASAP!! We will update Wed or Thursday next week and give more details about the procedure, his condition, and pictures from our trip. Thank you so much for the prayers!!

New Videos Of The Boys

Only have time for a quick update, but wanted to share some videos. They are from last month, but will give a look at how much they've changed (especially for those who don't see them often). Here they are:

Jack asking for a banana



The boys playing



The boys playing on the floor



Boys pushing their toys around



Luke playing on the train



Luke playing with his backpack on