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

June

I think a monthly update is how it is going to go right now! Luke is doing great. He is getting all his feeds through his feeding tube. He wears his backpack all day and it hasn't slowed him down. He is still getting feeds at night too. The last week he has been interested is a sippy cup again and 3 days took all his day feeds by mouth. We also have taken him off his night time oxygen and he has done great. This week he didn't gain as much weight as he has been so we are going to go back to all tube feeds and just let him drink a sippy as bonus formula. If his weight gain continues to slow down then we will put him back on oxygen at night. He is talking more and is walking a little bit. If he has a point to go to he will walk there but he still won't just take off and walk. Luke does things in his own times so I am sure one day soon he will take off and never slow down! Jack is picking up more and more words everyday. Just today Jack brought us a book and let us read the whole book to him--twice! My boys are getting so big and are not babies anymore. It makes me sad but I love seeing them learn new things.

Here is a picture of them last summer:



On April 29th we blogged that Luke was a steady 14lbs for the past couple months. He is now 17lbs and 3oz!! Here is a picture from our cruise in March and one I took today. He is getting chubby cheeks and thick legs!


Lily giving Luke kisses!


Sunscreen hair Jack:


Brothers kissing. I have worked hard to get them to love each other instead of fighting. Sometimes it works!

New Doctors For Luke

No new pictures, but wanted to give an update on Luke. We knew twins would be challenging, especially once the boys were born and we realized that the "normal/great" experience of a first baby would be nothing like we had hoped for. I knew that leaving my job to stay home with the boys and care for all their special medical needs would not be easy, but never imagined how demanding, stressful and exhausting this past year has been. I still love being home with them and am thankful for the opportunity. Had I known what challenges we would face this past year, I'm sure it would have scared me away from quitting my job and dedicating all of my time to Jack and Luke.

Sorry for the lack of updates. Extreme busyness is no excuse - I know that everyone is busy - but it's just a way of life here now... I hate dark and rainy days as well as the extreme heat. I let too many things get to me and constantly struggle with focusing only on what really matters and not wasting my time and frustration on things that don't. This spring Luke's specialty clinic at the hospital started a support group for families of kids with special needs and chronic medical conditions. It has been great to share frustrations and get tips from others in similar situations. As hard as we have it, most families' medical struggles are far worse than ours, and it reminds us how much we have to be thankful for. It's good to be reminded that as loving and helpful as family and friends are, no one else really "gets it" and understands our challenges unless they are living and dealing with medically needy kids every day.

Last week the group was small and most of the time was spent talking about Luke and his feeding issues. His intake is never consistent month to month or even week to week. Occasionally he will take a small amount of food with texture and have no problems, but the next day he gags and throws up as soon as anything enters his mouth...
He has had his feeding tube for over three months and is gaining the exact weight that he was before the tube was placed. Normal gain is 10 grams per day. He has always averaged and is still only doing 5 grams per day. The doctor's goal is to reach 10-20 grams per day to help catch up, but so far his body is taking everything it can without any increased weight gain.
Luke has stopped drinking bottles and will occasionally drink slowly from sippy cups, but the only time we can feed him consistently is overnight and during nap time. We hate overfilling him and making him throw up, but finding the right balance has been very difficult.

The leader of our support group referred us to a developmental clinic at the hospital that assesses medical and psychological conditions to treat extreme feeding dysfunctions. This morning we had our first appointment and LOVE the doctor. She wanted to hear the entire story of Luke's life - before and after birth. She asked lots of questions, took very detailed notes and is the first doctor that has really connected with and taken a true interest in him. For over a year, we have asked for tests and referrals, trying to do anything we can to get some answers and find out what Luke needs. We now have someone who will fight for us and not stop until we get answers and start to make some progress. She called a pediatric GI doctor while we were there, explained that Luke could not wait any longer and needed to be seen immediately, and was able to get us in this afternoon.

Luke is starting two new medicines. The first is an antihistamine that surprisingly should increase his appetite. The second is reglan, which will help his stomach to empty faster. We are aware of reglan's side effects and have tried it before - Luke did not tolerate it and we stopped after about one week. This time the dosage is about one-fourth of what he was getting before and hopefully it will be enough to help without causing the irritability and twitching.

For feeding, we were told that we MUST make sure he gets at least 20 ounces per day (our high-calorie formula/calorie-boosting powder/microlipid mixture that we are currently using). He usually gets around 16 ounces since the only guaranteed feeding time is overnight and naptime. He is just too busy during the day - never still and constantly trying to climb on things - but we have a solution. His feeding pump is very small and came with a special-sized backpack that holds the pump and IV bag. The problem is even though the backpack is small, it is still almost as tall as he is. There is a "super-mini" backpack that we have ordered and should have within the next two weeks. That will allow him to wear his pump and receive feeds while he is awake and active. Many kids with feeding tubes wear their backpacks and have continuous feeds throughout the day - it becomes a part of them and helps them gain the weight they need. We are still a month or two away from that, but at least it will make it easier for us to eventually get enough into him.

OK - way too long and the boys have already been asleep for over three hours. If I don't quit and get to sleep now, it will be a really rough day tomorrow. Thanks for all of the continued thoughts and prayers. We will do our best to keep you updated on a more regular basis.

I know, I know.......

Long time but we have been busy. Jack is running around and Luke is very close to walking too. We can't really take our eyes off of them since Luke is a monkey and climbs with lightning speed and Jack is right behind him! Here are a couple pictures from our cruise in March:



Jack started walking on this vacation. He saw his cousins running around and decided to follow them. He hasn't stopped since! Playing at the beach with the cousins:

Luke getting a breathing treatment. Both boys had a cold and needed lots of TLC!

We went on a cruise for my parents' 30th wedding anniversary. It was us, my parents, and both my brothers families. We had a great time.



So a quick update on the boys:

Luke: He is weighing in at a steady 14lbs. We are still having issues getting him to grow and changing his formulas and additives around. We are getting close to having to do daytime feeds through his feeding tube. Right now we are only doing nighttime feeds. Luke has 7 teeth--5 of them in the last month! He is starting to pick up more words and jabber more. He is getting close to walking. He will hold one finger and walk all around. He still won't eat anything that isn't baby food consistency BUT he does like to chew on pickles. He loves Sesame Street and will sit super still for long periods of time--which is a miracle with him! He likes to climb and is fast and agile like a monkey! One second he in playing on the floor and next thing we know he is in his toy bin standing on the edge of it trying to get to the TV. He still loves to cuddle, wrap his fingers in my hair, and give kisses out without having to be asked.

Jack: He is about 21lbs. He will eat everything put in front of him. He signs and talks all the time. His 2 favorite words right now are "outside" and "bath". He is walking around and likes to be chased. Jack has 8-9 teeth and one BIG molar. His second molar is working its way through. Jack likes Sesame Street too especially Elmo. Jack doesn't climb as much at Luke but gets mad when Luke goes places that Jack can't get into. Jack is starting to be more of a cuddler especially when he is tired. Jack isn't as free with his kisses and usually only gives them away if he is asked--and if he feels like it.

They are so much fun and I love seeing them grow and learn new things everyday. I pray that we are raising them in a Godly home and will raise them to be strong men of faith!

Playing in the snow

The boys have kept us very busy these last two months. This is the first week since the beginning of December that all four of us have been healthy and feeling well. Luke is doing well with his feeding tube. Less than a week after we started his night feeds, he was sick for a whole week and would not eat or keep anything down. Now we've started things back and he's adjusting to eating during the day and getting his extra two-bottles-worth of formula overnight while he sleeps.

My parents are here visiting for the week and were looking forward to sunny days and the chance to take the boys outside. Instead, they have seen the most snow that I've seen since coming to Arkansas eight years ago. We had six inches of snow in the Little Rock area yesterday, but once it stopped, we bundled up the boys and headed outside.

Rachel has to work yesterday, today and tomorrow. Instead of trying to come home and make it back each day, she stayed at a hotel a few exits down the interstate from the hospital. Today the sun is out and should start to melt what's on the roads before refreezing tonight. Here are some pictures and videos from the last few days.


The boys love standing up and looking out the back door


Jack is getting tall and reaching for anything he can


They love playing with their train


At the back door watching Lily in the snow



No sled, but a laundry basket fit them perfectly


Riding through the street


Luke on his snowy slide


Jack doesn't like being down in the snow



Video of Jack and Luke riding in the snow



Video of eating with Grandma

Luke is doing well

We brought Luke home at the end of the day Friday and he had a pretty good night. A little extra cranky and pretty sore, but Tylenol every 4-6 hours has helped a lot. He is happy to be back home and is playing and smiling just as much as he normally does. This morning the boys slept in until 9am and hopefully they will sleep good again tonight.

Successful Surgery

Today was Luke's big day. He was unable to eat anything after midnight, so I woke up and gave him one last bottle at 11:50 last night. We arrived at the hospital a little before 7am and checked in to prepare for his surgery. He was very hungry and grumpy, but did better than I expected. His surgery didn't begin until around 11am, but it went quickly and without any problems. He had a laparoscopic gastrostomy tube (feeding tube/g-tube/button) placement. I won't post a picture because right now it looks pretty bad...

Tomorrow morning Luke can start eating again (bottles by mouth), we will be trained on how to use and care for the feeding tube, and they will do some test feedings using the tube. If all goes well, we should be back home sometime tomorrow. Now we will be able to give Luke some extra formula during the night to increase his calorie intake and weight gain.

Luke before surgery - very hungry and chewing on anything he could find


Resting in his hospital room before bedtime

Schedule update

Just got an update on Luke's surgery tomorrow. They now plan to start around 10:30am instead of noon.

Surgery for Luke tomorrow

Luke is getting his feeding tube tomorrow. I just called to get the details for the surgery. They want us there at 7am, but the surgery isn't scheduled until around noon. Lots of wasted time if you ask me...

Since he is on thickened feeds and can't do any clear liquids without problems, he can't eat anything after 2am tomorrow. We will have one HUNGRY and MAD little boy in the morning. At least I'm used to all the screaming and can tune it out pretty well. For everyone else in the waiting room tomorrow morning - too bad...

Luke's surgery is scheduled

Luke will have surgery sometime Thursday at Arkansas Children's Hospital to get his feeding tube. We won't know the exact time until we call Wednesday afternoon and get all the instructions. He should have to stay one night and hopefully will be home on Friday.

Luke is feeling much better

We were discharged from the hospital late Friday afternoon and were so glad that it was not a long stay. It was nice to know exactly what he needed and that sped things up and kept him from having to stay so long like he did in October.

We will continue to do updraft breathing treatments at home and have some other stronger medicine at home now for when he gets sick next time. It's too early for the doctors to call it asthma, but his "reactive airway disease" and "chronic lung disease" mean that he has bad asthma which we can only hope he eventually outgrows.

He should be having his surgery for the feeding tube very quickly - the surgery clinic should call us tomorrow and he could have it done this week. It's fast, but at least it will be done quickly and he can start to really gain weight. We'll update when we have it scheduled.

Luke is in the hospital again

Jack just gets no love. He is doing great, growing well, eating more and more, and is learning a few new words and sounds. He will put his left hand to his mouth - sign language for "eat" - but that's all he knows right now. It helps to keep him from screaming all the time, but that's all he does all day (because it seems like he is hungry all the time).

Luke had his appointment yesterday with the Medical Home clinic at the hospital. Even though he was sick for about a week around Christmas, he did gain some weight. He is gaining about 7 grams a day, which is better than the 5-grams/day that he had been averaging. This puts him in the range of normal weight gain for babies his age. It's still not enough, though - he needs 10-12 grams/day to do any catch-up.

It's not something we want to do, but we are ready for Luke to get a feeding tube. His speech development has dropped off compared to Jack (not saying or learning as many words) and continued delays can turn into big problems if he is not saying sentences and ready to start reading by school time... We have to have a consult with the surgeon and an upper-GI exam to check his esophagus and stomach, but normally the surgery will happen in 4-6 weeks.

Luke decided he misses the hospital too much - he had a very bad night and this morning we took him to the emergency room. When he really gets sick, he goes downhill fast. Last night at dinnertime he began wheezing and coughing a lot. At bedtime he had a breathing treatment, but needed two more to get through the night. By the morning he could not eat and was really having trouble breathing - our treatments and suction machine were still not enough to help.

He was admitted this morning and Rachel just left to go home and get some sleep. Luke is doing much better after the hospital's deep suction and much stronger breathing treatments. The symptoms are the same as his last hospitalization in October, but since we caught it fast and know exactly what he needs, we hope to only be here another day or two.