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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