Friday, June 27, 2014

June Update

Sorry this is a little late. Ken hijacked my computer and I just now reclaimed it!

The June appointment went really well. It was really fun too because Ken and Jack came this trip. We decided to make it a little family mini-vacation. We drove to Kansas City on Saturday and had all day Sunday to do what we wanted and then drove home Monday after Luke's appointment. It was a quick trip but really nice. The weather was good and not too hot so we enjoyed some outside time.

I will skip to the appointment first so those that don't want to hear about our weekend can stop reading! Luke only lost about 10 ounces! Not even a whole pound. I was pretty proud. The doctors were happy and we were cleared to continue for another month. We are currently in the process of weaning his appetite stimulation medicine. His last day was on Tuesday and this hasn't been a great week of eating. Even his teachers, who didn't know we were stopping, commented on how he hasn't been eating very well this week. We all have had a slight cold so please pray that his decreased eating is related to his runny nose and it will pick back up again. I really hope it is just his nose and this weekend we can get to start eating a bunch again. Thanks for all the prayers and keep them coming. Luke hasn't had a tube feed since June 2nd and that is amazing in my book. is more from our weekend.

Saturday we drove to Kansas city. We got there and our room wasn't ready so we went for an early dinner. Ken chose a little restaurant that has trains that delivered the food. He thought the boys would really like it and they did. They thought it was very cool. After dinner we went to Cabela's and wandered around. It was a cool store and we got the boys life vests. After Cabela's we went back to the hotel, got our room settled, and went swimming. The boys had so much fun swimming and Jack even did some swimming by himself (with his life vest on)! Sunday we did Father's day brunch and then drove around downtown. We went to the Farmer's market and then to Union Station. It is beautiful. There is a train museum, a planetarium, shopping, and we even got to see some real trains. It was nap time, then dinnertime, and then we drove around some more. We went to a park and walked around the gardens and paths by the water. The boys loved being outside and running around. After that it was time to go back to the hotel and get ready for bed! We were worn out. The next morning we packed up, went to Luke's appointment, and then drove home. Even though it was a quick trip we jammed a lot in and had lots of fun.

boys taking a nap in the car

At the train restaurant

Ally was more interested in the french fries than the trains

Union Station


Watching the trains

At the park

The Kansas of the main reasons we were in Kansas City. They were the paper that wrote the article about the clinical trial and I saw that article on Facebook!

Monday, May 19, 2014

May Update

Well we rocketed through the testing that the doctor wanted us to do plus got to go see endocrinology. Usually it takes 3-4 months to get an initial appointment with endocrine but I asked a few favors and because I have a good relationship with Luke's medical home clinic team at Arkansas Children's Hospital, and they were able to get Luke in within a week of asking. That is a miracle in itself! The results? Well everything was NORMAL! Glad for that but again sort of wishing we could have found a reason why it takes such an enormous amount of calories to maintain Luke's weight. We have him on 1400 calories a day from his formula and are finally getting him to grow. That 1400 calories doesn't include what he eats by mouth every day too..which is almost another 200-300 calories. When he got weighed on Thursday he was just shy of 27 lbs!! He has never weighed that much!

The doctors felt good about proceeding with the clinical trial so we have started the crucial point in the trial.....I am SOOOO NERVOUS. I try not to think about the what ifs and pray about the positives and the outcome we are expecting. For Luke to start eating everything and not needing tube feeds anymore.

This is what we are doing:
Friday: We started the appetite stimulant. It is not FDA approved for children and only given to adults but they are using it in the study.
Tuesday: (5/20) We start weaning off his formula. It is only one hour a day so it won't really catch up with him for a couple days but the goal is to be completely off his tube feeds by June 4th! Scary times!!

The results they are seeing in the clinical trial kids are they just start eating.They call it "the flip". As the formula intake decreases the kids make it up by eating more. The doctor and I are both concerned about his weight since he needs an abnormally high amount of calories to keep weight on. They expect clinical trial participants to lose about 10% of body weight and then start gaining it back. If he continues to lose past 10% then he will have to be started back on formula and the clinical trial will be over. That is the part I am so scared about and praying about. I want him to triumph over his feeding issues and move past this time in his life. I would love to post in 6-9 months that we are getting rid of his feeding tube forever!

Luke has a friend named P. P was Luke's feeding tube friend. They both had feeding tubes and love to get together to play. Jack usually asks if he can get a feeding tube when all three of them are together as he feels left out! Well P got his feeding tube taken permanently out 2 weeks ago!! YEAH P! It is funny though because Luke will now say "P is not my tube buddy anymore" and he is so sad. We take that opportunity to encourage him and tell him that if he would start eating more then he could get his tube out too like P. He says OK and then runs off to play!

Another "issue" we are praying about is that we enrolled the boys in 4yr old kindergarten! The issue is that they do not provide nursing for the 4yr kindergarten since it is not a state mandated program. No nursing means no tube feeds for Luke. If he is not eating and requiring tube feeds then he can't go. We decided to step out in faith and enroll them in the class with the expectation that he is going to do amazing with the clinical trial and not need tube feeds this fall.

Now is the time we need all the extra prayers we can get! I appreciate all the encouragement and notes from people praying for him and know that we have our prayer warriors out there! Thank you from the bottom of my heart. Major changes these next couple weeks and I am holding my breath!

Wednesday, April 30, 2014

April Clinical trial visit

A little information: Luke is getting continuous feeds about 20 hours a day. I was sure that once he started getting continuous feeds that he would really start gaining weight. When he was getting the bolus feeds in his stomach he usually threw up one or two of those a day. All those wasted calories were now staying in and I figured it would allow him to grow. Well I was wrong. After several trials with different calorie concentrations we were right back where we started....40 calories per ounce and just maintaining his weight. I talked to Dr. D (Clinical trial Dr) about him not gaining weight. She talked to Dr. A (Gastrointestinal Clinical Trial Dr) and they decided we would have a special meeting when we came on Thursday.

Normal kids his age need 850 calories per day to GAIN weight. Luke is getting around 1100 every day and just maintaining his weight. Any less and he loses weight. We can't change his formula concentration anymore because he is maxed out and don't want to overload his kidneys. Plus one thing I didn't think about that Dr. D said was when we start weaning his formula and Luke has to start eating....All he is going to have time for is to eat. If he has to eat 1100 calories a day then he won't have time for anything else.

I scoured through the boxes of papers we have for Luke and tried to find any test that we have had done on Luke and took them to the clinical trial appointment. We sat down and talked about him, past symptoms and current. Dr. A was very thorough. We talked and decided to run a bunch of labs and get a belly x-ray. We will be doing growth hormone studies, pancreatic studies, blood count, electrolyte labs, kidney and liver function test, and allergy tests. Some of this stuff has already been done but it has been around 2 years so a lot can change in 2 years. He started him on a new reflux medication. There is talk of doing a "scope" on him again-which is a video camera looking at the insides of his digestive system but that is only if nothing else is found. There are some other options available but again they are future things. I will wait to discuss them until we decide to do them.

So for the time being we are "on hold" with the clinical trial. They liked to say "deviating from protocol." Again I struggle with "I hope they find something wrong vs I don't want anything to be wrong." Finding a diagnosis would give us something to treat but then that mean he has something and no mom wants their child to have a disease or syndrome or disorder.

The trip was great. Weather was good on the way up and decent on the way home. We had some rain on the way back but nothing hard and not more than 20 or 30 minutes. On the way up to Kansas City we stopped and saw my last primary from work. I loved getting to see her mom and snuggle with her. She has gotten so big and chubby (which is good for preemies)! We ate at our favorite Italian restaurant and Luke enjoyed a plate of cannoli cream. In the morning we went back to our favorite restaurant and Luke drank some coffee creamer. creamer. He wanted to try it so I let him. Calories are calories!

Will keep updated as we find out results from the study. As of right now we still have our next appointment on May 15th.

Clinical Trial Week 3

Week 3:
Very good drive up to Kansas City. We have gotten our stops pretty much figured out. Going up we stop maybe twice...bathroom break, a snack, and to feed Ally. We have found a place that sells local pecans and other goodies. Our favorite so far has been their cheddar horseradish Amish cheese. Ally is really good on the ride up and doesn't fuss much unless she is hungry.

We get into Kansas around 2 or 3 and eat a late lunch. Usually we pick something big so we can take leftovers to the hotel for dinner and of course a dessert. This week we found a GREAT place. It is a little Italian restaurant called Cupini's Italian Food. It was one that I found online while scrolling through Google Map. It is a deli style Italian restaurant and WONDERFUL.The lady working the counter was very nice and gave us the whole run down of the menu. Mom got their lasagna and I got chicken pasta with a pink sauce. Mine was okay but mom's was the winner of those two. When we go back I will get something with their marinara sauce because it was yummy. We had also gotten delicious stuffed zucchini and an order of garlic bread. They had some beautiful desserts. We got a passion fruit/raspberry cheese cake and a tiramisu to go for later. We also split a cannoli. I had Luke try a bite of the inside cream and he LOVED it. It has cinnamon in it and was delicious. He finished almost all of the inside of our cannoli and was asking for more. The wonderful lady at the counter knew we were in Kansas for a clinical trial for Luke and his feeding tube. We asked if we could have a little bit more of the inside cream for Luke and she squeezed us a good amount into a cup...and didn't even charge us! He ate some more and we took the rest with us back to the hotel, We will go back there again...maybe even in April...even if just for dessert! We went to the hotel, unpacked, and then went swimming in the hotel's indoor pool. This is Luke's favorite part!

Mom and I had talked about how we were getting tired of the hotels breakfast. There isn't much for me to eat as I can't eat eggs (Ally doesn't do well when I eat them) and their orange juice is watered down and the pancake machine was broken the week before. We went to a breakfast place and it was very good too. Luke ate a couple bites of pancake and they had some lemon curd that he inhaled.

It has become apparent that Luke gets a little anxious about his appointments as he always says "I don't think they will need to poke me today or lay me down" We are honest with him and tell him that they will need to but like always it is very fast and doesn't hurt very much and he can get a treat afterwards. One morning he was acting out and I told him that if he didn't start acting right he was going to lose privileges. He looked at me and asked "I will lose my feeding doctor privileges? I won't have to go?" I couldn't help but smile...poor (smart) guy was trying to lose privileges so he didn't have to go to the doctor.

God has been very good to us on our travel days. Twice it was forecasted to be bad weather on our return days and both times we have been fortunate enough not to run into any rain. We have encountered strong winds but no severe weather! The trip home seems to take longer and we have to stop more often for Ally...she isn't too happy the last couple hours. We have found a lunch stop that has 2 play indoor playground at a Burger King and an outdoor playground at a Sonic. Luke enjoys running around and playing while mom and I eat lunch.

The next couple weeks we aren't doing much....continuous feeds and medicine. Have to talk to Luke's nutritionist at Children's Hospital to see if we can tweak his formula recipe and try to get him to gain weight. He hasn't gained anything yet but has gotten a little taller. We need him to pack on some pounds because they are expecting him to lose 10% of his body weight when we start weaning his formula and he doesn't have much to lose right now. Please pray that we can get him to gain weight quickly! I would love for him to his 30 pounds before we start weaning formula and losing weight.

Luke snuggling with Ally before bed
Grandma Barnes gift was light up balls. This is a screenshot of the boys skype-ing before bed and showing each other with toys.

Our next travel visit is April 23.

Tuesday, April 1, 2014

Clinical Trial Week One and Two

Luke and his backpack
Week One: We started with our appointment on Monday March 10th. We left early and drove up to Kansas City on Sunday. We had a fabulous (late) lunch at the Cheesecake Factory and then hung out at the hotel as we were too tired to do anything else! Monday morning we packed up, went to his appointment, and then drove home to Arkansas. The appointment went well. They weighed him, measured his height, did another EKG, and more blood work. Those things we will have to do every visit. This visit we got "the medication" - we don't know whether it is the Amitriptyline or the placebo. The nutritionist had figured out 2 different feed options for Luke's continuous feeds. He has to get 26 ounces in a day over a minimum of 10 hours. One option was a rate of 75 mls/hour over 10 hours and the second option a rate of 65 mls/hour over 12 hours. I laughed at that because he has NEVER gone over 45 mls/hour without having stomach pain, gagging, and throwing up. Even though the formula bypasses his stomach, the formula going too fast makes him uncomfortable and end up throwing up whatever is in his stomach. There was hardly a night when we were doing continuous feeds that he didn't wake up between 12-3 screaming and crying because his belly hurt. They told us we would slow it down to whatever rate he was comfortable long as we got the 26 ounces in. The first day we tried out his feeding rate at 65 mls/hr but he didn't tolerate it. We bumped it back to 45 and he did better. After a couple days we started increasing it and he currently is running at 57 mls/hr! He is tolerating it and sleeping through the night!

Luke's favorite part of the appointment was when they gave us a lunch bag with an ice pack to keep his medicine cold. He wasn't excited about the bright cool lunch bag but the ice pack! We were leaving the appointment and walking through the lobby. Luke would stop, look at someone, hold up the lunch box, and it a loud whisper say "ice pack." He would then move on to the next person without a second glance to that person. Mom and I were cracking up at him! The older people in the lobby thought he was pretty cute too.

Ken's mom has been sending little gifts for the boys to open on travel days. Week one gift was Star Wars action figures. My mom has been getting Luke and Jack little things too. This first visit was the light up light-sabers. This visit was spider man sunglasses for her car. The boys are loving the attention.

Week 2: We are slowly ramping up his medication dose. We haven't seen much change except for tolerating the continuous feeds at 57 mls/hr and some loose stool! He is doing a little better about trying new things...but only if he initiates it. Same things at the appointment: blood work, EKG, weight, and height check. He lost a little weight but only a little bit so no big deal. The big event this trip was Luke's feeding tube came out during the night. He woke up around 3am complaining that his sheets were wet. I thought maybe his pull-up leaked but as soon as I turned the light on I saw his tube laying in the bed. I don't know how long it was out but I had a hard time getting it back in. Because I had such a hard time getting the tube back in his stomach, I was afraid to feed him until we got it evaluated. We were in Kansas City and headed home that day. We didn't make it back into Little Rock in time to get his tube replaced at Arkansas Children's Hospital. We had to wait until the next morning to get it replaced.

This week's present from Ken's mom were storm trooper pez dispensers. Luke has never had pez before and he ate a whole pack in one sitting. Mom got him new shoes and got Jack some Russell Stover candy. Anyone who knows our children know that those were the perfect gifts to meet their personalities.

Luke showing the nurses and doctors his pez dispenser after his appointment

Monday, March 31, 2014

Week Zero of Clinical Trial

Okay sorry I have been lagging....seems to be my speed these days!

Week zero there wasn't much to do. It started with our appointment on Thursday (February 20th) with the EKG and blood work. During this week we kept a 3 day food log of everything Luke ate or got via his tube. That way they can keep track of his calorie intake and have a written account of what little he ate. It also helps us compare later down the road. We had to do 3 video recordings of him at dinner time. The meals went in typical fashion where it took him over 15 minutes to take ONE bite of new food just to be able to get to his favorite foods. You would think that it is a no-brainer....take a pencil eraser size of new food (usually soft so it isn't too hard for him to chew) really fast so then you can eat your favorite foods but for him it is a struggle. You can just see the internal turmoil he deals with every time he is faced with something new to eat. The doctors took the videos so I don't have one to post but I will do my own sometime soon to show you how hard it is for him.

So not much change this week....3 videos, 3 day food journal, and waiting for lab results to come back (everything was good). Week 1 appointment was supposed to be March 3rd. We were to drive out on Sunday, have the appointment Monday morning, and then drive back Monday afternoon so I could work on Tuesday. The forecast in Kansas and in Northern Arkansas wasn't looking too good. Kansas was supposed to get 5-9 inches of ice/snow and even Little Rock was supposed to get bad weather. After emailing a couple times we decided to postpone the appointment a week so we didn't have to face the bad weather. It was a good thing we did because Kansas and most of Arkansas got LOTS of ICE! We would have been stuck in Kansas for several extra days. We had an option to go to New Orleans but we didn't realize it was Marti Gras until later in the week...good thing we decided just to push it back a week because I bet we would have had a hard time finding a place to stay.

 Thanks for being patient..R

Tuesday, February 25, 2014

Great Appointment

Thanks for all the prayers and encouragement during Luke's trip to Kansas City. Luke did so much better than we could have hoped.

We walked into the room to take his vitals and the first thing he asked was "Are you going to lay me down on the chair?" The nurse and I assured him that we wouldn't be laying him down but only wanted to talk and watch him eat. He then smiled and didn't stop talking. I haven't ever really seen him take to strangers the way he did with them. The conversation piece was his new light up light saber. It gave him security and very thankfully the Dr has boys of her own and was a Star Wars buff!! Daddy would have been so proud at how long Luke and the Dr talked about their favorite parts of the movies. We didn't feed Luke his normal morning bolus feed as we wanted him to be hungry for the appointment. While my mom and I were eating he kept asking for banana and pudding so I told him that I would take a banana to his appointment. We started the appointment with Luke playing on the floor with toys while I answered questions and about halfway through it was time for him to eat. He was ready and excited. He ate half a graham cracker, half a container of yogurt, 4 BIG bites of banana, 2 butter mints, and half a squeeze pack of apple sauce! He never eats that much in one sitting and he actually took bites off the banana. We usually have to slice them really thin before he will eat them. One bite he took was an adult size! I was so proud of him. The funniest thing was towards the end of the appointment: Luke looked at me and said "Mom, When is the feeding Dr going to come in?" I looked at him and pointed to Dr. D and said "she is right there." Dr. D looked at him and said "BAM! I was here the whole time." Luke thought it was so funny. Especially the BAM part...Mr. Willie fans understand! We passed and were accepted into the clinical trial as long as the Gastrointestinal doctor also approved Luke too but Dr. D didn't think it would be a problem. That appointment was the next morning.
Luke with his light saber

We were done for the day and did what any 2 husband-free women did while out of town...SHOPPED! We enjoyed being outside and walking around the outlet mall, had a great lunch at a Japanese restaurant, and saw some dinosaurs. There is a restaurant (T-Rex Cafe) that has robot dinosaurs and is Jurassic themed. We walked in to look around their gift shop and first thing was a T-Rex that roared and bent its head down toward us. Luke did NOT like that and wanted out as fast as he could..needless to say we didn't eat lunch there.

In one of the race cars around the outlet mall

By the time we got back to the hotel we were tired and didn't feel like getting out again. We rested and watched TV for a little bit, ordered in some pizza, and then took Ally and Luke swimming! The hotel has a very small indoor pool. It was nice..the water was a little cold but we enjoyed it.

Ally in her swimsuit.
Thursday morning we packed up and went to Luke's "week 0" clinical trial appointment. I filled out paperwork and the GI Dr approved him too!! The negative was he had to have lab drawn and EKG. He did great with both...a few tears shed...but he held still and let them do what they needed to do. I think the worst part for him with the stickers coming off from the EKG. Next time I will be bringing some adhesive remover so they can come off without hurting him. We were done and headed home. The weather home was CRAZY! It was cold dark and rainy in Kansas and it was supposed to change over to snow by noon so we wanted to get out as fast as possible. About an hour we got sunshine but bad winds. There were some reported gusts up to 60 miles per hour and we sure felt them! Arkansas was supposed to have bad storms so we were worried about running into them too. We kept seeing DARK clouds in our perimeter but only had some sprinkles for about 20 minutes. Finally the sun came out, the winds died down (a little), and the storms that were forecast disappeared. I really believe your prayers were the reason for our safe journey! Our "week 1" clinical trial appointment is March 3rd. We will get a new feeding schedule and start the medication/placebo. I am going to really try to document our progress through this trial so be prepared for lots of post!!

 Luke getting his EKG

coming up..
*Ally's post
*Clinical Trial..all about it and what I know!
*Breakdown of each week and travel
*Each week's activities starting with week 0