Monday, October 29, 2007

Roller Coaster Day

Well today was very much a roller coaster day. I have been doing really good about keeping my faith, but today I just lost it. I guess someone else knew what kind of day it was going to be because this verse was in my inbox this morning: "Wait patiently for the LORD. Be brave and courageous. Yes, wait patiently for the LORD." Psalm 27:14 NLT I truly believe in my heart of hearts that this is what we have to do...just wait for our prayers to be answered. Today we had our MRI result reading with the neurologist. Can I just tell you how hard it is to hear a doctor say severe brain injury, lots of damage, possible is HORRIBLE!!!!!! I think the hardest part for me is we have been led to believe by numerous doctors throughout this that most of the damage Luke had was to his brain stem area. It now appears he has various areas of damage throughout his brain. The neurologist would not give us a prognosis on what he will and will not be able to do...saying basically anything is possible. I firmly believe (after a complete melt down) that Luke will be healed! He will be able to walk and talk, catch frogs, ride his bike, everything a little boy should be able to do. The fact of the matter one knows (and I know I have said this before) but God, and he has proven just how awesome he is by the changes we have seen in Luke. One thing we do ask for prayers about is, they did find what could possibly be an aneurysm, although could also be nothing at all. They are ordering an MRA to be done. This will give them a better look at the blood vessels. Please pray it will be nothing.

We also had our follow-up with the eye doctor. He wants to give Luke another month and see the results of the MRA before deciding on the surgery. More than likely he will do a surgery to move Luke's eyes to the center, then wait 3 weeks and do the eye lid surgery. He did encourage us to keep opening and closing his eyes, he feels it is working if Luke is starting to grab for items we show him. I did feel a lot better after our visit with him, as he seemed encouraged by the improvements we are seeing with Luke. Next week we do have a follow-up with Dr. Manwaring, the neurosurgeon, and also an appointment with an orthopedic doctor to get his take on Luke's left side. So, please, please, please pray without ceasing for continued improvement for our little Lukey. I will try my hardest to be patient while God works His plan for Luke...and no matter what ALWAYS to BELIEVE...there is a light at the end of this tunnel! Happy trick or treating!

Wednesday, October 24, 2007

Another Cute Lukey Story

Well Luke made it thru the MRI fine yesterday. They did have to put him out for it, but he had no problems with that. One thing we did not know, is every time he has an MRI, someone has to be there to reprogram his shunt. We ended up being at PCH for 5 hours total getting the MRI and then waiting for someone to come and reprogram the shunt. We will meet with the neurologist on Monday to get the results.

Here is another cute Luke story. On Monday my aunt Kelli was here with Luke while I was getting a hair cut and running errands. She discovered that if we open up Luke's eyes and show him something to do such as stick out tongue he will do it! There is also a toy he has that if you pull the carrot it pulls out. We open his eyes, show him the toy (doing no talking at all) and he will pull it. Same with his gun, we open his eyes and he will grab it and pull the trigger. Anyway, Mike came home on Monday, Luke and I were outside watering flowers. Well the weather is cooling off and the critters (mice) are in the garage so Mike has been setting traps. He caught a mouse in the trap. So, he picked it up and took it to Luke and opened his eye without saying anything. Luke grabbed for the mouse. He did it so quickly I screamed in a panic because he was so close to grabbing it (those of you that know me well, know how deathly afraid of mice I am.) So this is a great discovery!!! I think it has to mean he can see pretty good!

Monday we meet with the neurologist and eye dr. Please, please pray for positive results at both visits for us! No matter what happens...we believe, look at all the strides the gladiator has made! God is so good!

Friday, October 19, 2007


Luke had a Barium Swallow Test done today. During this test, they give him different consistencies to swallow to make sure he is not aspirating it into his lungs. I was shocked (and still am!) at the results. We have been giving Luke applesauce, baby food, yogurt consistency food for months. Well the tests today showed he is not capable of these consistencies! He should only have up to a pudding thickness. Now, we had the test done at PCH, and quite frankly I just really think we have bad luck at that place. First of all, the seat they had his sitting in was very awkward. It did not fit him. I was trying to feed him, hold his head, and make sure my arm wasn't in the way for the x-ray. Plus, I could tell the way he was swallowing WAY slower than he does when he is eating at home. I could not believe it. It was almost like he was not going to perform no matter what. I even asked the lady giving the test how this could be the case when he has been eating applesauce and baby food for months; she really did not have an answer for me. I mean before when he aspirated in the hospital he got pneumonia in a matter of hours. It does not make sense to me at all! Things were going so smoothly with Luke's progress, then another bump, before we get to the light at the end of this tunnel, but I KNOW it is coming!

Anyway, Luke has an MRI on Tuesday at...PCH again. Please pray that our bad luck at that place is done, and we will have positive results from the MRI. We will meet with the neurologist and the eye dr on the 29th to go over the results. Please pray for Luke's eyes to open before then. I just feel like he is so close. We tell him to open his eyes, and we can see him trying. Thanks so much for your prayers...believe!

Tuesday, October 16, 2007

Home from Disneyland!

We made it back from Disneyland! Lynsey had a great time dancing, but boy was it packed. We usually go in Jan or Feb when there is no one there and no lines. We waited over an hour to ride the new Nemo ride! We had a great time, but were glad to come home. I added a picture on stage at Disneyland.

We received the new program for Luke, and I think it is going to be great. There is a lot of deep pressure, warm wet compressing that we will be doing on the left side. Also, a lot of activities to stimulate his eyes and vision. I have noticed a difference in his left hand since before we left. It is coming around! Praise God! Another thing I noticed he is tounge. He is bringing it all of the way out of his mouth now! Before he never would get food off of his lips when we were feeding him, but now he will. He is so cute when he does it too. We call it his lizard tongue.

Here is another cute story about Luke. I was walking with him the other day. I got a great deal on a baby jogger stroller that he can fit in off of Craigslist:) We still have not gotten his wheelchair that was ordered in April...whole other story there. Anyway, we were walking, and I had my ipod in one ear. Before Luke got hurt, one of the songs he loved was, "Honkeytonkbadonkadonk." Well that song came on, and I put the ear bud in his ears. He got a huge smile on his face, and made an almost laughing sound. It was so cute! Thanks for checking the updates and for praying without ceasing. Believe!

Tuesday, October 9, 2007

Quick Update

Just wanted to get a quick update in as Lynsey and I are leaving for Disneyland Wed-Sat. Her dance company is dancing at Disneyland and California Adventure on Friday and Saturday! She is very excited; although also very sad that Luke and Mike are not going. I promised her when Luke gets better we will take him to Disneyland with all of the bells and whistles! He continues to follow new commands. One of his newest tricks is to do what we call his finger trick, he also will squeeze and release your hand on command (pretty hard too.) This weekend I was walking with him and Lynsey was riding his bike. When you back pedal on his bike, it makes a very distinct noise, every time she did it he would cry. Finally I realized what was making him cry-he knew that sound was his bike! He is very attuned to what is going on around him. This weekend one of his friends from preschool, Cadan, came over and read him a book (pic is of them.) He definetly remembered Cadan and playing with him. When I told him he was coming over he got a big smile on his face.

We will finish our second round of oxygen therapy next week. We will most likely take a month off, then start another round. How can we stop it now with the results we are seeing? Another thing Luke is getting stronger at is standing. It used to take Mike, Lynsey, and I to get him to stand. Now it just takes one of us. He gets a big smile every time we have him do it. He also has gotten good at tricking us he is sleeping. We'll say, Luke are you tricking us again you are sleeping, he'll just get a big grin on his face. We are looking at an intense program in California. It is If anyone has any experience with this place, we would love to hear it!

Thank you all for continuing to pray without ceasing and give us hope each and every day. There are plenty of folks out there who still don't believe miracles happen. Everyone keeps telling us that everything happens for a reason. Perhaps that reason is to let this all be a reminder how everyone is only guaranteed this moment in time, our lives can truly change in an instant. Our lives today are completely different than they were seven months and 3 days ago, but we are SO blessed to be where we are today! Or perhaps that reason is to prove that God does exist, and is still very much in the miracle business, He is proving that through Luke's miracle. Please continue to pray for eyes to open and the left side to wake up. Believe!!

Now Lyns and I are off to the house of mouse; one more thing Go D-Backs!

Wednesday, October 3, 2007

Great Day!

First of all, I have to say, Luke has been responding so much these last three days! Today we had a great visit with the President of the NACD, Mr. Doman. If you remember, this is the therapy program from Utah that we have been doing with Luke. Every three months, they come into AZ to evaluate the kids that are on their program. We feel so good about the progress Luke is making after talking to him today. He has worked with over 30,000 kids with brain injuries in his time and told some great stories of remarkable recovery. The best part is he is very approachable, very humble, unlike most of the doctors we have dealt with who think they are King of the World. He said Luke is definitely headed in the right direction. He is going to make us a new program to start doing with Luke. He also advised us to wait before doing any surgeries just yet on his eyes. He has seen them open even after it has been this long. He told us just to open and close them all day until we are sick of doing it, that way we stimulate his vision. We kind of did a little experiment with his vision last week, since we really have no way of telling whether or not Luke can see. Mike had been gone for a week hunting. When he got home, he walked over to Luke, and I opened his eyes. As soon as he saw Mike, he started crying. Mike did not talk, so I believe he can see!

Other than that, we did take Luke to therapy last week, but after the conversation with Mr. Doman today we most likely will not take him back. Like he said, how much good is going to come from 1 hour of PT and OT a week. Besides we did not have the greatest experience. It just breaks my heart to have people working with Luke when their heart really is not in it. We were in each session for an hour. First of all, they just laid Luke on the dirty carpet, no mat or nothing. Then both therapists were looking at their watch every 10 minutes, just like they were waiting for the session to end. So, we are just going to concentrate full force on the Utah program because I strongly feel this (and the oxygen therapy) is the answer to all of our prayers for getting Luke back to the little boy God made him to be!

One more little story to tell. My cousin, Jeff, who is in the Air Force, just returned to the U.S. after serving our country in Afghanistan. Earlier this week, Luke received a package in the mail from him. Inside was the absolute coolest thing, it brought tears to my eyes! Jeff had requested that a flag be flown in Luke's honor while he was in Afghanistan. Luke received the flag that was flown (on July 4th no less!,) folded the special way, and framed with a certificate that says, "These Stars and Stripes were proudly flown on Independence Day, the 4th day of July, 2007, over the new Craig Joint Theater Hospital at Bagram Airfield, Afghanistan in your honor at the request of SrA Jeff Anke. Isn't that so special...thank you so much Jeff! And thanks to all of you for your continued prayers. Believe...there is a light at the end of this tunnel!