The Devil fights the
hardest when you are close to a blessing or a breakthrough in your life!
Don’t Let him win! Keep Going!! Don’t Give up!
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.
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.
This story proves anything is possible: http://usatoday30.usatoday.com/news/health/2006-07-03-brain-rewired_x.htm
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:)
Wednesday, October 10, 2012
Successful day!
Quick update to let everyone know today went perfect. They did the bone marrow stem cell harvest from both of Luke's tibias, took the cells to the lab for processing, then did the lumbar puncture with Mannitol to inject the stem cells back into Luke. Everyone was pleased with how many cells they got, and how well Luke did. He is a trooper and has been amazing us this trip! More to come on that when I am not typing letter by letter on an iPad.
One of my biggest concerns was where they would be doing the procedure. I have to say, it was cleaner than most hospitals/clinics we have been to back home. All of the doctors/nurses have been amazing and actually acknowledge Luke, which we again, hardly ever see at home. More details to come when we get back home. Thanks so much for your continued prayers. I have to say, one of the staff told me today he read the medical records from Luke's drs back home. He said from reading the reports he did not expect Luke to be able to do some of the things he does. We all have high hopes for him now. God is good!!
One of my biggest concerns was where they would be doing the procedure. I have to say, it was cleaner than most hospitals/clinics we have been to back home. All of the doctors/nurses have been amazing and actually acknowledge Luke, which we again, hardly ever see at home. More details to come when we get back home. Thanks so much for your continued prayers. I have to say, one of the staff told me today he read the medical records from Luke's drs back home. He said from reading the reports he did not expect Luke to be able to do some of the things he does. We all have high hopes for him now. God is good!!
Thursday, October 4, 2012
In just three days we will be boarding a plane to go to Mexico for Luke's big stem cell treatment. We are asking for prayers for so many things from this trip. First and foremost that all goes well and we make it home safely. Secondly, that we see improvements from the procedure. Luke is going into this as the first pediatric TBI patient they have treated. This can make a mother very anxious...setting off into these uncharted waters. I have to say, the staff has been VERY accommodating and helpful with my question overload. I am sure they all can not wait to meet the mom with a million questions. They will pick us up at the airport and take us to our hotel. Then, they pick us up everyday fora visit with the staff. On Monday they will most likely do the stem cell aspiration where they take the cells from Luke. Then on Wednesday is when they will most likely re inject them. So those are the big prayer days. I will try to update on this blog, but for sure will be updating on my Facebook page, so send me a request if you want to see the updates there. I am just not sure what the wifi will be like to allow me update here.
Here is another email I received from another mom whose child with autism has the procedure done at the clinic we are going to:
We have been in for two stem cell treatments, one when our son, Sam, was 8 and one last Christmas when he was 10.
Both
times we saw positive changes immediately, within the first few days.
That may not be usual but both times was the same for us. Our son's
autism presents sort of all over the map. In some ways he is right on
target and in others he is extremely far behind developmentally. He also
presents with difficult behaviors. Sam's
behaviors did improve. He has much more awareness of his surroundings.
Also his coordination has improved as well.
There
seems to also be an overall maturity about him as well. He's done some
novel things like get himself in and out of the shower and get dressed
for bed. If he's hungry now he just finds himself something to eat
until someone makes him something. So I would say his independence has
improved as well. These are hard measurable markers and only people
really close to him can tell that he has changed in those ways.
He
is also making sense of more Who What Where questions - answers he
could not give us before.
Thanks so much for following us on this journey! We are certainly expecting a miracle and thank you all for your prayers to get us there. I was working out today and one of my favorite songs came on, a reminder to me for sure to have no fear and follow where you are led.
Be strong in the Lord and,
Never give up hope,
(He's) going to do great things,
I already know,
God's got His hand on (this) so,
Don't live life in fear. -from "The Words I Would Say" by Sidewalk Prophet
Tuesday, September 4, 2012
Luke's Next Adventure
We are getting ready to embark on our next adventure with Mr. Luke. My
aunt and I are taking Luke to Cancun on October 7th for another round
of Stem Cell therapy. My
aunt is going with me, because she has a place about an hour from
Cancun, and Luke likes her. She flies into the airport many times a year and has for many
years.
This round of stem cells will be different. They will
be extracting stem cells from Luke's bone marrow (in his hip,) and
re-injecting it into his spine to bypass the blood/brain barrier. I
have prayed about this for months and probably changed my mind about
going about a million times. I find myself looking for reasons not to
go. If I am true with myself, though the one thing this journey has
taught me more than anything else, is to listen to that voice in your
head, because it is almost always right. Cancun has been floating in
the background for possible treatment for many years now. I have
researched the facility and feel confident on where we were going. However, a few weeks ago, I found they are offering the same treatment
in Tijuana. It is much closer, a little cheaper, no threat of a
hurricane while we were there. I was finding many reasons why it would
be better, less time away, etc, etc. However, my head was screaming,
CANCUN! As if that wasn't enough, after emailing a few parents who had
taken their own children to Cancun for treatment earlier this year, I woke
up to this email:
It was a great experience for my son. It was far less invasive & scary than I had feared (him being masked with anesthesia was the most stressful part) and we have seen very promising results. It has lessened the inflammation substantially & in turn lessened the symptoms/behavior affiliated with it. Though my son is chronologically 8 yrs old - we basically arrived in cancun with behaviorally speaking a 3 yr old - with a 2 yr old's verbal skills. Four months later my son is behaviorally around six and his expressive language is near that of a 3 yr old - he still has difficulty with apraxia but it has lessened significantly. Stem cell therapy has changed our family's life - Andrew is no longer an observer in his world - he is using some Spanish words (we moved to south America immediately after the procedure) he can enjoy new experiences without anxiety, he follows instructions, can answer questions and make decisions on his own - is meeting many milestones he simply never met at the appropriate age - using utensils to eat, dressing himself without difficulty or stress, blowing raspberries, saying stinky & laughing at his own jokes, playing wii, cutting his own hair (not my favorite but a right of passage nonetheless ) he even started typing this week when he realized he could look up his favorite animals online. We have not utilized any other "medical interventions" since doing stem cell therapy in order to determine its efficacy. While I can only comment on our experience - I can say without hesitation that it was of incredible benefit to my son and in turn to our entire family.
It was a great experience for my son. It was far less invasive & scary than I had feared (him being masked with anesthesia was the most stressful part) and we have seen very promising results. It has lessened the inflammation substantially & in turn lessened the symptoms/behavior affiliated with it. Though my son is chronologically 8 yrs old - we basically arrived in cancun with behaviorally speaking a 3 yr old - with a 2 yr old's verbal skills. Four months later my son is behaviorally around six and his expressive language is near that of a 3 yr old - he still has difficulty with apraxia but it has lessened significantly. Stem cell therapy has changed our family's life - Andrew is no longer an observer in his world - he is using some Spanish words (we moved to south America immediately after the procedure) he can enjoy new experiences without anxiety, he follows instructions, can answer questions and make decisions on his own - is meeting many milestones he simply never met at the appropriate age - using utensils to eat, dressing himself without difficulty or stress, blowing raspberries, saying stinky & laughing at his own jokes, playing wii, cutting his own hair (not my favorite but a right of passage nonetheless ) he even started typing this week when he realized he could look up his favorite animals online. We have not utilized any other "medical interventions" since doing stem cell therapy in order to determine its efficacy. While I can only comment on our experience - I can say without hesitation that it was of incredible benefit to my son and in turn to our entire family.
So, we are going to Cancun. Yes, I am going to let them use a huge needle on my son to extract his precious stem cells, and yes, they will be using another needle to re-inject them into his body, all with the hope of getting more healing. Why would any mother in her right mind submit her child to this? Because I know Luke was meant to live for so much more. I know that despite the doctors telling us there is a two year window for healing post brain injury, our God is bigger than any number! After all, we have seen the most healing in the 2-5 years after Luke was hurt. I have always felt like the only path to more healing and restoration in Luke is going to be stem cells. I mean it only makes sense! I just feel like maybe the whole reason we have the stem cells is when we were made we were equipped to heal ourselves. Some forms of cancer are healed with a bone marrow transplant. Here is a study of bone marrow cells being used to treat TBI:
Stem Cells May Provide Treatment For Brain Injuries
11 Mar 2011Stem cells derived from a patient's own bone marrow were safely used in pediatric patients with traumatic brain injury (TBI), according to results of a Phase I clinical trial at The University of Texas Health Science Center at Houston (UTHealth). The results were published in this month's issue of Neurosurgery, the journal of the Congress of Neurological Surgeons.
"Our data demonstrate that the acute harvest of bone marrow and infusion of bone marrow mononuclear cells to acutely treat severe TBI in children is safe," said Charles S. Cox, Jr., M.D., the study's lead author and professor of pediatric neurosurgery at the UTHealth Medical School. The clinical trial, which included 10 children aged 5 to 14 with severe TBI, was done in partnership with Children's Memorial Hermann Hospital, where Cox is director of the pediatric trauma program.
All the children were treated within 48 hours of their injury with their own stem cells, which were collected from their bone marrow, processed and returned to them intravenously. UTHealth's Department of Neurology is also currently testing the same bone marrow stem cell procedure in adults with acute stroke. In a separate trial, Cox is testing the safety of using a patient's own cord blood stem cells for traumatic brain injury in children.
As a Phase I trial designed to look at feasibility and safety, the study did not assess efficacy. However, after six months of follow-up, all of the children had significant improvement and seven of the 10 children had a "good outcome," meaning no or only mild disability.
Children who survive severe TBI are often left with serious complications and disability. Currently, there are no effective treatments to protect or promote repair of the brain in these brain-injured children.
Side note: I have contacted, more like stalked this doctor until he would respond to my email. He said they are looking at doing this on kids like Luke who are post injury, however most likely they would start with us to five years post injury. He also said it is going to take years for them to get FDA approval for the trial.
Thursday, July 26, 2012
We had a super busy summer that seem to fly by and school started again yesterday! The reports say his first day went great, hoping that continues for the rest of the year!
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| Here are some pictures from our summer vacation. We spent a week at Hurricane Lake near Pinetop/Greer. |
Luke checking out a bear my dad killed right near our camp.
This kid has no fear! Luke letting a snake crawl all over him.
One of my favorite pictures, Luke very excited he is catching a fish.
The cousins that were there.
Luke did a three week camp at a therapy place near us twice a week for the last part of summer break. He really enjoyed it, and I wished I had found out about it sooner, then perhaps he could have done it all summer. Maybe next year! Anyway, I got this yesterday from one of his teachers at that camp. It made my day:) I love it when people see the potential that he has.
Dear Luke, I only new you for a few weeks over the summer at l.i.f.e but
you stole my heart. I work with wonderful kiddo's like you all day and
have done for 10 years, you are so special and I keep thinking about
you! I saw that you have so much you want to get out and express I also
saw a kid with a larger than life personality who Is strong and
courageous, also with a sense of humor when you laughed as you tricked
me playing cards. It was a
pleasure to have you at life. Love you Luke your truly amazing.
Thursday, June 28, 2012
Wednesday, June 27, 2012
Happy 12th Birthday Luke!!
Twelve years ago we were blessed with a baby boy!! Little did I know then that this kid would teach me so much more than I could ever teach him. Happy Birthday to the strongest, bravest, and dare I say, most stubborn boy I know. We love you buddy!!
Monday, April 9, 2012
Miracles Can Happen
Coloring eggs with his cousins
Finding eggs Easter morning
Scooting to get his basket
Our family Easter morning
Luke and Dad
Luke and my grandpa
We had a very Happy Easter and hope you all did too! We had our own Easter Miracle when Luke spoke his longest sentence in five years!!! He has really been saying a lot more words the last month or so, and more importantly making his wants/needs known. Last week, I brought him out some shoes to wear, and he said, "I pick." Then after he picked his Heely's, he said, "I can Heely." So last night, I asked Lacey if she was ready to go to bed. She said yes, and as I was leaving the room with her, Luke said, "Dad, can I go to bed?" Now, granted when he speaks, it is sound by sound, so it is very hard to understand, and sometimes it takes us awhile for us to understand, but we will take it. It is progress, when we were pretty much told if he isn't talking by now, it isn't gonna happen! Other things he has said lately are "push me," "I can go," "I eat," "I want juice," among other things. God is good, and we are so happy for this season of hope, great things are ahead!!!
Sunday, March 4, 2012
Five Years...
Five Years. That is One Thousand Eight Hundred and Twenty Six days since we received the phone call that brought us to our knees. Five Years since Luke was given a 3% chance of even making it through the night. Five years that he has spent fighting every single day to regain what he had. Five years that we have walked this journey called Traumatic Brain Injury. I can remember thinking once Luke was "out of the woods," and we knew he was going to survive, well give him a few weeks and he will be back in school. Instead, he spent 8 weeks in the hospital, 4 months in a coma, and every day since March 6, 2007 showing us what a fighter he really is. While I wish more than anything, he had recovered and was living life as a "normal child", it wasn't up to me. The fact is nothing on this Earth is up to me and my plans. God has a greater plan for all of us than we could imagine, and everything that happens is because of Him. We have spent the last five years pursuing anything that shows promise for Luke to get him walking and talking again. Some have worked for him, and some not so much. More than anything though, I have realized no matter how much we put our hopes in the latest promising treatment or cure, there is only one place we can put our hope and know that in the end all things will work together for His good.

Five years later, and we are at peace. This is our new normal. This is a cross we have been given to carry on this Earth. We are no different from anyone else. Everyone in their lives faces trials at some point, and it is through these trials that we grow. We learn what we are really capable of doing. I will never ever give up praying and believing that Luke will walk and talk one day. More than anything else though, I just pray he is happy with the life he has been given to live. I pray he feels loved and knows that everything we do for him is giving him a chance at just a little more independence. I pray that through their brother, his sisters will have more tolerance for those with special needs. I pray that we have the patience to get Luke through the hard days. I pray that those that meet him, will be able to get past what their eyes see to the boy Luke really is. I pray he will continue to have the perseverance, stamina, and drive to go places no one ever imagined he would. More than anything, I pray that he has peace to know that, even if it never happens here on Earth, someday he will be healed and walking and talking again.

Luke still continues to amaze us with the progress he makes. Just last week, in the middle of the night, I heard him calling out, "Ma, ma." This is something he has never done before, he usually will just yell if he needs us. I walked into his room and asked if he needed something. His reply, "Ya." When asked what he needed he said, "W-a-t-e-r." Now it was sound by sound to say the word, but we will take it, progress is good:) Thank you all so much for following us on this journey for the past 5 years. Without the amazing support we have from our family and friends, there is no way we could do it all. We are very blessed!

Five years later, and we are at peace. This is our new normal. This is a cross we have been given to carry on this Earth. We are no different from anyone else. Everyone in their lives faces trials at some point, and it is through these trials that we grow. We learn what we are really capable of doing. I will never ever give up praying and believing that Luke will walk and talk one day. More than anything else though, I just pray he is happy with the life he has been given to live. I pray he feels loved and knows that everything we do for him is giving him a chance at just a little more independence. I pray that through their brother, his sisters will have more tolerance for those with special needs. I pray that we have the patience to get Luke through the hard days. I pray that those that meet him, will be able to get past what their eyes see to the boy Luke really is. I pray he will continue to have the perseverance, stamina, and drive to go places no one ever imagined he would. More than anything, I pray that he has peace to know that, even if it never happens here on Earth, someday he will be healed and walking and talking again.

Luke still continues to amaze us with the progress he makes. Just last week, in the middle of the night, I heard him calling out, "Ma, ma." This is something he has never done before, he usually will just yell if he needs us. I walked into his room and asked if he needed something. His reply, "Ya." When asked what he needed he said, "W-a-t-e-r." Now it was sound by sound to say the word, but we will take it, progress is good:) Thank you all so much for following us on this journey for the past 5 years. Without the amazing support we have from our family and friends, there is no way we could do it all. We are very blessed!
Tuesday, December 27, 2011
Luke's New Ride
Here are some pics from our Christmas! We had a great time celebrating with family and friends! Luke got a new Dune Rider and LOVES it! He is really good at driving it too, and very determined about where he wants to go:)


Proof that Santa came!

Scooting over to check out his new ride!
Sis helping him opening up a gift
Trying to stand up
Out for a ride

Friday, December 23, 2011
Thursday, December 15, 2011
Neuro Feedback
So sorry for the lack of updates once again! Some exciting things to report though...
We started Luke getting neuro feedback a few weeks ago. I actually started the process for it many months ago. We originally met with this doctor back in July, but Luke needed to have a EEG that was seizure-free before he would start the neuro feedback.
A short explanation of what neuro feedback is: Neurofeedback is a type of biofeedback that uses electroencephalography to provide a signal that can be used by a person to receive feedback about brain activity. Basically, it is using the signals, to hopefully retrain the brain. So Luke has had three sessions so far, and we have already noticed some improvements. His behavior has been so much better!! Huge praise God for that!! Honestly, if we see nothing else, if his behavior could just change it would be worth it:) However, we have also noticed he has been attempting to say words once again a lot more. His teacher has also noticed this at school. In fact, yesterday she reported he said hot hog clear as day! He just overall seems to be more focused and more aware. I am excited to see what the remaining appointments will bring. He will do a set of 10 sessions, then be re-evaluated. Typically though, with TBI we are looking at 20-40 sessions. Please pray we continue to see improvements with this!
If you are interested in learning more about Neurofeedback, here are some great sites:
More in-depth explanation of neurofeedback: http://www.behavioralmedicinebc.com/neuro.html
This is the closest I could find to someone like Luke. This person was also very aggressive, Luke is not this bad yet, but I fear as he gets bigger. I pray we have the results they have seen. Luke's injury is also very similar to this person's.
http://www.joanfabian.net/roshijournal.asp
Luke is seeing Dr. Alberto Texidor in Mesa. Ironically, when I first started looking, he would not have been my first choice, he was on vacation for like 3 weeks, plus he doesn't have a web site, which turned me off. However, all roads kept leading back to him, and I am so thankful. He is amazing and Luke really gets along well with him!
Here is a pic Luke's teacher sent me of him using his new scooter at school:

Here is a pic of Luke recently. You can see how big he is getting. I love this picture of him standing by himself. His new record is now 30 seconds.

Thanks for continuing to follow along on Luke's journey. As we approach the five year mark from when he got hurt, I pray there are great things on the horizon!
We started Luke getting neuro feedback a few weeks ago. I actually started the process for it many months ago. We originally met with this doctor back in July, but Luke needed to have a EEG that was seizure-free before he would start the neuro feedback.
A short explanation of what neuro feedback is: Neurofeedback is a type of biofeedback that uses electroencephalography to provide a signal that can be used by a person to receive feedback about brain activity. Basically, it is using the signals, to hopefully retrain the brain. So Luke has had three sessions so far, and we have already noticed some improvements. His behavior has been so much better!! Huge praise God for that!! Honestly, if we see nothing else, if his behavior could just change it would be worth it:) However, we have also noticed he has been attempting to say words once again a lot more. His teacher has also noticed this at school. In fact, yesterday she reported he said hot hog clear as day! He just overall seems to be more focused and more aware. I am excited to see what the remaining appointments will bring. He will do a set of 10 sessions, then be re-evaluated. Typically though, with TBI we are looking at 20-40 sessions. Please pray we continue to see improvements with this!
If you are interested in learning more about Neurofeedback, here are some great sites:
More in-depth explanation of neurofeedback: http://www.behavioralmedicinebc.com/neuro.html
This is the closest I could find to someone like Luke. This person was also very aggressive, Luke is not this bad yet, but I fear as he gets bigger. I pray we have the results they have seen. Luke's injury is also very similar to this person's.
http://www.joanfabian.net/roshijournal.asp
Luke is seeing Dr. Alberto Texidor in Mesa. Ironically, when I first started looking, he would not have been my first choice, he was on vacation for like 3 weeks, plus he doesn't have a web site, which turned me off. However, all roads kept leading back to him, and I am so thankful. He is amazing and Luke really gets along well with him!
Here is a pic Luke's teacher sent me of him using his new scooter at school:

Here is a pic of Luke recently. You can see how big he is getting. I love this picture of him standing by himself. His new record is now 30 seconds.

Thanks for continuing to follow along on Luke's journey. As we approach the five year mark from when he got hurt, I pray there are great things on the horizon!
Thursday, November 3, 2011
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