Sunday, June 9, 2013

Well we have had a change of plans on the Texas trip.  Luke had his worst ever day behavior-wise last Monday.  Among other things it was very difficult to get him loaded into the Suburban.  He has learned to straighten his arms and legs and push against us if we are loading him and he does not want to go.  Well after I did finally get him loaded, he decided that he was going to get unbuckled.  He lunged at me and grabbed onto my arm with all of his strength.  We were driving in the middle lane of three lanes of traffic, so it is pretty much a miracle we did not get in a wreck.  I also had Lacey and my two nephews in the car with me.  My older nephew I could tell was a bit panicked, and even asked if I wanted him to call someone to come and help us.  It was one of those moments where you see your life flash before your eyes, and in that moment I knew, no matter how much I might think I am able to handle him when he is like that, it is not worth risking my safety or his.  The other thing is, when he is in that mode, it is impossible to get thru to him.  He is basically in fight or flight mode, where he is determined to win no matter what.  Most of the time there is no real trigger for the behavior. 

Before we can do anything we have got to get these behaviors under control.  The thing that is so hard, is he is not always like this, some days he can be perfect, but if he is off, he is really off.  I have talked to neurologists, neuropsychologists, behavior treatment centers this week, and there are a few options.  For now, we are using the medicine the neurologist prescribed.  It does help the behavior, but basically knocks him out where he just wants to sleep all day, so that is not the answer either.  If anyone has any experience with Risperdal, I would love any comments good or bad that you may have on it.  It just amazes me that one little pill can have such an effect on his behavior to the point it knocks him out.  The only medicine we use is Advil, Aspirin, Cold/Flu, or allergy medicine, so this is new to us.  While I am extremely disappointed that we are not going to Texas, I am hopeful that when one door closes maybe another will open and we can get a happier Luke out of it.  I always tell the doctors if we could just channel the energy he has when he is mad or angry into something positive, he would amaze us all!  Thanks for your continued prayers!

"I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world!"  John 16:33

"And we know that in all things God works for the good of those who love him, who have been called according to his purpose."  Romans 8:28

Here is a recent pic, you can see just how big he has gotten...

So thankful for this girl, she has been a big help this week as we have dealt with him, seems she can always bring him back to reality...

Friday, May 31, 2013

Summer Adventure

We are getting ready to embark on our next big adventure with Luke.  Next week Luke and I will leave to spend the rest of June and first week of July in Texas.  A bit of background on how this all came about...

In November, three days before Thanksgiving, my beloved Papaw passed away.  While we knew it was coming, losing someone you love and who is such an important part of your family is never easy. He was such an amazing man who taught me lessons he never knew he was teaching, just by living the life he led.   Then as fate would have it, my beloved Mamaw was in a passenger in a car that was T-boned by another car three days before Christmas.  She passed away due to injuries suffered in the accident on the day after Christmas.  While we knew they were happily reunited in the heavens above, we were so sad to lose them both in less than a month.  They were truly two of the most humble, giving, loving, honest, amazing people you could ever hope to meet.

Three of my dad's cousins came out to the funeral.  Of these cousins, one is Associate Chair and one is a Professor in the Speech Therapy department at a prominent University in Texas.  Each summer they run a camp for children that focuses on Speech Therapy and reading.  These children receive almost three hours of speech therapy four days per week.  Basically, you get the equivalent of 2 years of therapy in four weeks.  We had been trying to get Luke evaluated for the camp, but it never worked out.  While it is very bittersweet for the reasons they were here, they were able to evaluate Luke and thought he would be the perfect candidate for the camp.

I can find myself getting overwhelmed when I think about being away from Mike and the girls for so long.  Luke also has started being more aggressive due to the combination of puberty and brain injury. So, we could really use your prayers that these next four weeks starting June 9th when we leave for Texas are very productive weeks in Luke's recovery.  There is a saying that goes something like, "You were given this life because you were strong enough to live it."  Along that same line I believe we were given this opportunity because we are strong enough to do it.  This may very well be one of those times I look back and realize there is only one set of footprints.  I will cling tight to my life verse the entire time I am there because I know, "I can do all things thru Him who gives me strength."  Phil 4:13.   When my Papaw passed away and my dad was doing the eulogy at his funeral, Mamaw went thru their life story with him. The thing I learned from not only my grandparents, but my own parents as well is, "Nothing worth having in life ever comes easy."  I know Luke's got two angels up there cheering him on, and I am counting on him to make them proud.


Wednesday, March 6, 2013

Six years...six years that have flown by in the blink of an eye.    Six years and Luke continues to surpass all expectations the doctors set for him six years ago.  I think this kid was born to defy the odds.  They said once he reached two years post injury, there would be no more recovery.  The biggest lesson I have learned in these six years, is "they" know nothing of the powers He has.  Thank you Lord for the healing you continue to bless us with today, even six years after that fateful day when our lives were changed in an instant.

I was not even going to do a six year post.  I feel like there needs to come a time where this is just another day, and attention doesn't need to be brought to it.  We will just celebrate in our own way the mercy and grace the Lord had on us March 6, 2007.  However, it seems like so many people lately have been asking about Luke.

The hardest thing about the six year anniversary is this year we will reach the point where we will have the "new Luke" longer than we had the "old Luke." We have already reached the point where he has been not walking and talking longer than he was walking and talking before he was hurt.  In my heart of hearts, I still believe that someday Luke will walk and talk again.  "You don't have enough faith," Jesus told them. "I tell you the truth, if you had faith even as small as a mustard seed, you could say to this mountain, 'Move from here to there,' and it would move. Nothing would be impossible." Matthew 17:20. The biggest obstacle in Luke's way now is puberty and the angst/hormonal changes that come with that combined with the frontal lobe damage from the head injury. This makes for a very angry/aggressive Luke at times. I just know if he could somehow channel this aggression into his recovery, he would amaze us all.

I am excited about some things on the horizon, and will share some of those details in another post.  In the meantime, thank you so much to those of you that have walked this journey with us the last six years.  You have no idea how much it means to us, from our families that sacrifice so much to help us out with the kiddos for just a night out, or a weekend away, to friends who simply just continue to ask how Luke is doing, we appreciate it all. 

Now I finally get to show something, I prayed six years ago I would be able to do for everyone that has walked this journey with us (turn volume up.)  From Mr. Luke himself, he says:

That was thank you if you had a hard time understanding him.  Luke will now use his words fairly frequently.  Somedays he will be telling us things in full sentences and some days it may be just a yes or no.  For the most part, we can understand him.  If we can't he is very persistent in repeating the same thing over and over again.  In his brain it all makes sense, why can't we get it.
In other happenings, Mike's mom has been taking Luke to archery and shot put lessons every Saturday morning for the last month or so.  He really seems to enjoy it.  Here are some pics of him in action:
 Luke drawing back his bow.
Luke doing the shot put with some help from cousin Dylon.

Thanks again for following along with our gladiator.  Many blessings to you! 

Friday, October 19, 2012

Stem Cell Recap

We have returned from our trip to Cancun for the Stem Cells.  I have to say, this trip far exceeded all the expectations I had.  The staff at World Stem Cells were all great!!!  Here is a breakdown of our trip by day for those of you that have asked.

We arrived in Cancun the Sunday before, as we were scheduled to be picked up at 9am Monday to visit the doctors.

Day One:  Dr. Kadish (the American doctor on staff) gave Luke a thorough check up during which he noticed Luke has a zinc deficiency.  Apparently bad acne, white marks on finger nails, and bad dandruff are all signs.  I have say, since we have put Luke on Zinc, I have noticed a HUGE improvement in his acne.  They also took a blood sample to test it, and gave Luke a shot of Filgastrim to stimulate his cells.  I was very impressed by how clean and nice the clinic was.  It was cleaner than some offices we have visited here.  The clinic is a brand new state of the art building as well.
You can tell Luke does not mind the attention at all.  I was super impressed by how everyone acknowledged Luke and spoke to him about what they were doing.  Besides Luke's PT, and pediatrician, it is rare than any doctors acknowledge him.  The other photos are of the building where the clinic is and one of the clean room where the stem cells are tested and processed. 
Day Two: Went over blood test and gave a second cell boosting injection.  I have to say we noticed so many things with Luke after they gave him the second injection of the Filgastrim.  He was super hyper!  In fact, we had a huge battle at the beach because he decided he was going in the ocean deeper than where I was taking him.  Thank you Rafael at Azul Beach for helping two crazy ladies battling a 12 year old out:)  My aunt took him in the swimming pool.  At the end he said, "I can stand," and "I will go by myself."  Keep in mind, he rarely will say more than "yes" or "no."  His words were also coming together closer than ever before and faster response time than before.  You can see in the pic below how he wanted to climb over the pool gate to swim by himself.  At dinner, my aunt and I ordered, and I ordered for Luke which I always do.  At the end he told the waiter, "my turn," and said he wanted, "edamame."  He must have heard me ask my aunt if she thought they had it there.
Day 3: Today was the big stem cell harvest and re injection.  They arrived to pick us up at 8:30.  They harvested the stem cells from his tibia bone, just below the knee, which meant shaving his legs just a bit.  He thought that was funny, and also discovered the up/down buttons on his bed while we were waiting.  They performed the procedure in the same clinic, using a surgery room in a recently opened IVF clinic.  Again, everyone was so nice.  The nurses there loved Luke.  During the procedure they called me numerous times and came in to let me know what they were doing and how it was all going.  The way it works, is first they take the cells, then they take them to the lab to process them, and lastly they re inject using a lumbar puncture.  All went very well!  The hardest thing was keeping Luke on his back for the rest of the day.  He did pretty good though.
Day Four: We first stopped by the clinic for them to check Luke's sites, and all looked well.  We then went to visit with Mrs. Aurora the Physical Therapist.  She was wonderful and gave me lots of ideas of simple things to do with Luke at home to stimulate the cells. 
Day Five:  Our last visit to the clinic where they gave Luke another injection of the stem cells via IV.  As soon as we got back to the hotel, he developed a fever.  I have say the staff was super attentive.  They sent a doctor our to our hotel to check him out and give him a precautionary shot of antibiotics. When we arrived they gave us a cell phone with all numbers for the doctors pre-programmed to use if we needed it.  After a few hours he was fine.  All afternoon he was super tired, and would alternate between irate and just plain sad.  I think his brain was in overload.  He did tell my aunt a story about hunting that I am still kicking myself for not recording it! 
I honestly can not say enough good things about the clinic.  They are truly a top notch operation and have thought of everything!  They genuinely care about the  patients they are seeing, it is not at all about the money.   They have made a difference in a lot of people's lives with everything from neuro ailments, orthopedic aliments, and a lot of kids with autism.  I asked them how often patients come back, and they said most don't have to because of the results they see, obviously most have not been as severe as Luke.  Plus, with views like this you can't go wrong:)

Now for the million dollar question, have we seen results??  Well it has  onlybeen a week, and they say usually wait about 3 months to start seeing things.  Luke saw his PT yesterday.  He said Luke is definitely showing better control and coordination while he was walking him up the stairs.  He also seems to be aware of more.  He was telling the PT that his heart was beating fast when they were walking up the stairs.  He also told him he wanted to go by "myself."  I have noticed that he does seem to be responding/processing things faster.  He is also noticing things around the house he hasn't really paid attention to before.  God is good!  I am so thankful I decided to go that voice inside my head instead of going to Tijuana like I was considering.  This cost the exact same amount (excluding travel,) but we got so much more out of it.  Thanks to my aunt for helping me out with Luke this trip.  She got to see him many emotions/outbursts and helped so much!  Thanks SO MUCH to Dr. Kadish, Rudy, Dr. Jose, Dr. Sylvia, the wonderful anesthesiologist(sorry forgot your name,)  EVERYONE for loving my son and wanting to see this work for him as much as us. You have blessed us so much!  Luke even gives it a double thumbs up:)