Friday, February 27, 2009

Talking Video





video



I have not gotten the video back yet that I sent in of Luke trying to talk, so I made another that is shorter. You can see how hard he is trying though to say words. Like I said before, he just has to be in the right mood, otherwise forget it, the kid will not say a word. I did get an email from the Speech Therapist with the Nacd. Here is what she said, "I viewed the video of Luke that you sent me---wow, he's doing a lot more than last time I saw him!" So that is awesome. He is continuing to drink great. If he is really thirsty, he will drink a cupful in just a few gulps now. Thanks for continuing to check in...believe!

Friday, February 20, 2009

Drinking great!

Luke has been doing great with his drinking in the almost 2 weeks since he pulled out his G-Tube. Praise God...that was a huge blessing in disguise! This week I had to make a video for the NACD of him "talking" so they can advise me on how to proceed or any changes to make in his therapy for that. So, the video was me telling him to say words for almost seven minutes. The kid did awesome! I am telling you, when he wants to perform, he will. Lynsey and my nephew were watching the video before I sent it, and after every word, they said, "Wow! He said it." I am anxious to see what they say when they get the video. I will try to upload it when I get it back or maybe make a shorter one of him saying a few words. As we approach the 2 year anniversary, since he was hurt I am more encouraged by his progress. Keep in mind, when we left the hospital most doctors told us any recovery we were going to get would be in the first 2 years...all I can say is our God is bigger than any timelines or dates doctors may give...Luke is living, breathing, recovering proof of that! I was cleaning thru some of his old toys and things we used to do with him in the beginning. I am truly amazed at how far he has come after looking at some of the simple, simple things he couldn't do then that are second nature to him now.

This week I contacted the doctor from Duke University that is doing the cord blood trials there. I had contacted her last September when we found out we were expecting about possibly using this baby's cord blood for Luke. She told me then, it would probably be 5-10 years away before they were doing sibling to sibling trials. Well...the squeaky wheel gets the grease, so I figured I would email her every 6 months or so just to see what she says. This week she told me she is hoping in the next year to be able to do it. That is awesome news! I am cautiously optimistic, as so many things have to go right for it to happen. First, they have to do the collection correctly, the cells have to be viable and useable, and they have to be a match for Luke. Please pray all goes well and someday we may be able to try this in the States. I get so frustrated because Obama is for stem cells, but using embryonic cells, which have shown time and time again in the research I have seen to be very harmful. Why can't he support Cord Blood Stem Cell Therapy when it has proven time and time again to be the best and safest? Believe!

Wednesday, February 11, 2009

Surprise!

Monday morning I woke up to quite the surprise. I went to get Luke out of bed and get him dressed. When I pulled back the covers I noticed he had no G-Tube. After a quick moment of panic, I found the old one laying on the floor. I asked Luke if he pulled it out, and he gave me the sign for yes. So, I ran and got the new one to push it in. That was not happening. Apparently, he had pulled it out sometime in the night because by this point the hole had already closed up. I called the doctor to see what we should do. She said she was not as concerned since he is eating all of his food by mouth, the tube was just for liquids. So, she suggested we give it a month to see how he does drinking, then if we decide, we will have it put back in. We agreed, as we are certainly not ready for him to have yet another surgery and be put under more anesthesia. I asked Luke if he wanted it put back in and he quickly signed no....guess that is why he pulled it out in the first place! He has done great drinking since then, although still just taking small sips and we thicken all of his juice to nectar consistency. I guess it is one of those things, when you are forced to do something you can. So, going with that theory how can we force him to walk and talk? I just know he is capable of so much more than what he is doing, if only he would push himself a little...this just proves it. That was our excitement for the week! I think it ended up being a good thing, one less thing we have to worry about, and one gigantic step forward! Go Luke...sometimes I guess you just gotta take matters in your own hands. Believe!

Friday, February 6, 2009

Back the the Grind!

Well I am happy to report that after a week's vacation last week, Luke jumped right back into his workouts this week. He is doing great at standing in his Lite Gait machine and also at riding either the stationary bike or Hot Wheels bike...although we definitely need to get him to go for longer periods to help strengthen those muscles. This week I have been working with some Brain Quest cards with him. They are questions geared at 6-7 year olds. He has done great. Now, I give him choices since he will not say the answers, so I am giving him some help, but I am amazed at how much he knows in that little head of his. One of the questions, yesterday was how much is a nickel worth? Before I gave him a choice, he showed me the number 5 with his hand. Another one was...Paul just hit a home run. What sport is Paul playing? I gave him the choice of baseball touch your nose or football touch your ear...once again right. I was thrilled with how good he was doing!

You also may remember the Jeep from awhile ago. Well, he has not wanted to ride that in months. So, Wednesday afternoon, I decided I was just going to put him in it and see what happened. Not sure if it was the rides at Disneyland or not, but he rode it for a half an hour! Then last night, we did it again, only the smarty pants this time figured out how to shift gears and only wanted to go at super fast speed. It goes a little too fast...nothing like a pregnant lady running down the street trying to catch a kid on a Jeep. He was getting so mad at me for not letting him go that fast. Mike is going to fix that, so there is only the slow speed and reverse.

We are seriously looking at taking Luke to LA this summer for three weeks to an intense therapy program out there. He would get four hours of therapy five days a week. We took him to be evaluated there last week, and they thought he was a great candidate. The only bad thing is, it is in a pretty bad area and we would be living in a hotel for 3 weeks. I figure in the grand scheme of things...it is only 3 weeks, we will survive...and hopefully Luke will come out even stronger because of it. Believe!

Monday, February 2, 2009

Disneyland!


Well, we just returned home from Disneyland. We all had a blast, and the best part is Luke did awesome and LOVED IT!!! He was able to go on a ton of rides (and probably could have done them all except for his cautious mom!) He did get to go on the new Nemo Submarine ride, Grizzly rapids, Indian Jones and tons more! At Disneyland, they were great at accomodating him. He was usually able to go to the front of the line along with 6 people from our party, or on Pirates they let us all go. This worked great for the long lines. Although on Wed and Thurs the lines were not that bad. California Adventure was built to accomodate wheelchairs, so we didn't get to go to the front there, but we did get there early enough that Luke was able to go on his favorite ride, Soarin' Over California. Luke was also excited we ran into his friends and our old neighbors, Bryan and Maddie. So, it was a great trip! Believe!