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!