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 with...as 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

Tuesday, February 18, 2014

Prayers Please!

Hello All,

First I want to say sorry that I haven't posted about Ally yet. I promise that I will get to it before her first birthday. It does help that my wonderful husband got me a new laptop that actually works so I can update a little bit easier!!! Thank Babe!!!

On the road headed to Kansas City

Some big things are hopefully happening in the Luke eating department! Here is what is going on:

One random day back in December I was feeding my Facebook addiction and thoughtlessly scrolling through all the posts on my phone. Usually Facebook post random articles that we all ignore because they have nothing to do with our life or interest. There was an article titled "Learning to eat, at age 4". I clicked on it but didn't read it at that time probably due to one of the 3 kids needing something from me. A couple days later I opened my Internet app on my phone and started closing all the open web pages. I quickly skimmed the pages and closed them until I got to the page with the article on it. I read it and thought it was interesting. The article said that the trial was going to end in July so I didn't think much about it since I figured that it was too late to get in on that. Several days later it was still bouncing around in my head so I "googled" the trial and found it on the clinicaltrial.gov website. I read about it and became more interested about it. I saw that it was currently recruiting in Ohio, LA, and Kansas City. I talked to Ken about it and got the go ahead to email the Dr. in KC. I had lots of questions and there were some trial qualifications that Luke wouldn't meet currently. After a month or so of emailing, a phone conversation, lots of talks with Ken and my mom we decided to make the evaluation appointment! There is so much to write but I will save it for if he gets accepted..no reason to bore  you with the details until then.

Ate the icing but not the cake!
I am in Kansas City in the hotel room bed writing this blog now. His evaluation appointment is tomorrow and if he passes and gets accepted then his first clinical trial appointment will be Thursday. Please pray that Luke is cooperative and eats (BIG PRAYERS). Luke gets nervous around new doctors. He always asks "Are they going to lay me down?" To him if he gets laid down then bad things happen which was usually true when he was little!! With everything he has gone through he has every right to be nervous but I am praying he is at ease, talks, follows directions, and eats better than he normally does.

His appointment is at 9 am. I appreciate all the prayers. I will update when I can.

That is as far as that (or any) fry made it in his mouth!

Wednesday, November 13, 2013

Where do I even start? Last post was in October 2012 and so much has changed from that time. Let's start with the one with the most changes....Luke!

Luke has done amazing this year. Looking back at the last couple posts we were just trying to do belly feeds with Luke and while he was tolerating 2 oz feeds, he didn't tolerate much more than that. He was getting feeds at night through his "J" port, which is the part that bypasses his stomach and goes into his intestines, and getting his belly feeds during the day. The backpack was still a big part of our lives! Around Christmas Luke really started doing great with his feeds! He was able to do more and more belly feeds and we were able to start cutting back his night time feeds. I am not sure when but sometime around February-March Luke accidently pulled his feeding tube out. The balloon that holds it in had partially deflated and it just slipped out one night when Luke was pulling his shirt off to get ready for bed. Typically when this happens we put the tube back in, refill the balloon, and have to go to the hospital the next morning to get it replaced. The J part of the tube has to be in a specific place so it has to be put in under an x-ray machine. It only takes a couple of minutes to get a new tube, but Luke HATED it..more for having to be strapped down than anything else. He still gets anxious about laying down for any doctor. Anyways... When the tube came out, Ken and I talked about it , and decided NOT to put it back in...just put a plain G-tube in and try to do some night feeds into his stomach. Doing a plain G-tube (it only goes to the stomach) is very easy and doesn't require a hospital procedure to replace...routine changes are done at home every couple months. From that point we continued to manipulate his feeds...VERY SLOWLY!  Increase his daytime volume, decrease his nighttime volume. Around June we were able to completely stop all night time feeds and just do 5 bolus (stomach) feeds. He has loved being backpack-free and also has slept so much better since we stopped the night feeds. He currently gets 6 ounces 5 times a day!
Now to the fun stuff...eating!

Luke's favorite things: marshmallows, yogurt melts, lemon pudding, and smarties. He will also ask for and eat consistently: pop tarts, slice of cheese, banana, jello, pancakes, and bread. There are other things he will occasionally eat, but not like the foods mentioned above. We still lots of room for improvement on variety and lots of work on volume. While he will eat bread or poptart...it is only about 1/3 of one slice. It is as start and we are happy about that!

My favorite story - Luke: "I want a sandwich!"
me: "What kind of sandwich?"
Luke: "A ham sandwich.....without the ham or cheese."
me: "So a piece of bread........?"
Luke: "Exactly! Can I have the sandwich?"

Now we can talk about Jack and also include how they boys interact with each other and their differences! Jack is doing great. He is so inquisitive and asks questions all the time. I hope he always has that drive to ask questions! He loves to dance and sing. He can ask for specific songs by name by the Newsboys, Toby Mac, Capital Kings, Carrie Underwood and others! His favorite artist is Toby Mac. While Jack likes to sing and dance, Luke likes to dance and "play" his guitar. They are so much fun to watch! Jack loves to eat and can eat enough for both him and Luke! Despite eating all the time he remains tall and skinny..typical boy! He likes anything sweet, can eat anything banana all day (fruit, bread, chips), and likes pizza too. He is a rambunctious little boy that likes to run, climb, wrestle, and be outside as much as possible. There is a lot of separating the boys for being too rough and many bumps and bruises. Luke likes to do those things too, but he will also sit and play quietly with cars for hours. Jack likes to be first and is competitive. Luke likes to be first if it is against his brother but with others doesn't really care. They love playing together but frequently have to be separated and told to be nice to each other. They definitely fight like brothers do but if separated for any amount of time they will run up to each other and give each other big hugs.

I will try to explain this the best I can...Jack is the snuggler while Luke is the lover! They both are affectionate but Jack wants to snuggle. He climbs into bed with me and snuggles. Asks for me to snuggle with him on the cough in the evenings. If he doesn't feel good he wants to have some part of him touching some part of you. He asks for hugs and kisses whenever we are going to be separated and runs to give hugs when we get back together. He is our touchy feely boy. Now Luke is not touch feely. He wants his own space. Majority of the time he wants to sit in a chair by himself unless he asks you to sit with him. He frequently will tell Jack there isn't any room in a chair for both of them. But Luke LOVES people especially his baby sister. I love walking into a room and Luke looks up and almost yells "Mommy! You look so beautiful!" even when I have just rolled out of bed with messed up hair and in my pjs. Luke is more detail oriented...he notices if I paint my toenails, wear my hair down, my earrings, etc.--and he will compliment them every time. If I wear my hair down and he wants to play with it and tells me over and over how soft and pretty it is. When he gives hugs on his own will (not asked for) he squeezes you so tight and won't let go for a couple seconds--so wonderful! Jack is my snuggle-bug and Luke is my love-bug!

There is so much more but that is a long read for one post. Here are some pictures of the boys over the past year:

Fall 2012

Christmas 2012
Christmas 2012
Easter 2013

Summer 2013

Big boy bed
Big boy bed
Getting a bolus feed

August 2013

All about Ally is the next post coming!

Tuesday, October 8, 2013

Many changes...

Stay tuned for a update on our family. I am going to try to do one once a month from now on! Sorry for letting this site slide as I know many people followed to keep up with our family. Here are a couple pictures from this past month. There have been MANY MANY changes this past year!

Introducing Ally Barnes (Allison Jade Barnes)!! She was born August 12, 2013

They boys just turned 4 and are quite the characters. Luke had made amazing progress with his tube feeding and eating!  Can't wait to tell you all about it.

Until next time!!

Sunday, October 28, 2012

Loving the weather!

It is finally cooler! It really has gone from HOT to cold in just a matter of days and that makes me and the boys allergies go crazy. But we are not letting that slow us down..lots of benadryl and cough medicine to help us through. We took the boys to a pumpkin patch last weekend and they had so much fun. It was the first time we ever got to take them because it seems like the previous years we someone was sick and/or in the hospital. We did the hay ride twice, looked for pumpkins, played in the corn pit, ran the hay maze, walked through the sunflower maze, petted the animals (I loved the pigs),and climbed the mountain of hay. The boys were worn out and were asleep not even 5 minutes down the road.

Enjoying the hayride

Luke thinking about picking up the pumpkin
Corn Pit
Luke in hay maze
Which way do we go mommy?
Luke carrying his pumpkin
Jack picking his pumpkin

Helping daddy wheel them in

Climbing hay mountain

Sleeping boys

 This weekend we had a marriage class in the morning. The boys enjoyed the attention of the child care workers and got to play outside with just a couple other kids. Later that evening we took the boys to go the lake in town where the city was having "Boo-lloon Festival". There were a couple booths giving away candy, a jump house, and hot air balloons. The boys loved them and didn't want to leave even though it was freezing!

On Thursday night Ken and I got enjoy dinner at a fund raiser for the March of Dimes. The boys were in their gallery of premature kids and it was nice to dress up and not have kids hanging all over you! Thanks mom for watching them! The March of Dimes is very active at the hospital I work at and our friends were the ambassador family that night. We love them so much. Many of you know their story since we have talked about them on the the blog before and here is a video about their story that was made for the fund raiser.

 Jodie and Me
 The boys picture. We were worried the photographer didn't get a good picture of them since they were ALL over the place.
 Couple of Coworkers and Me
The family!