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...