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

Merry Christmas!

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!

Halloween!

Luke's favorite part, taking out the guts!

Love to see this kid smile.

Lacey off in the corner, she was aftraid of Luke's mask.

Luke the ninja, Lacey as Tinkerbell, and Lynsey with her last minute costume, football player.

More carving fun!

Thank you!

Thank you SO much for all of the letters, postcards you are sending for Luke. We greatly appreciate it!!

Here is a picture of Luke at the mailbox. I have a video of him walking, but thought I had turned off the volume and hadn't. I don't think you want to hear me talking the entire time, so I will get another one soon and post that!

Seizure Free!!

Mr. Luke had an EEG last week to follow up on the episode he had a school a few months ago. We were thinking it could have possible been a seizure, and he had not had an EEG since August of 2007, so he was due. I called today, and the results are in...Mr. Luke is seizure free!! This is amazing in itself with the injury he has!!! Praise God!

Thanks so much for the letters you are sending also, he is loving them!!

Checking the Mail!

Luke has had a great few weeks!! We have seen fewer behavior issues, praise God!!! I had his conference at school this week, and he is doing a lot better there behavior wise also. His teacher is impressed with the amount of words he can identify by pointing to the correct word when given a choice of four words. Yeah Luke!!

Yesterday he was showing off at home. He walked (with me helping from behind, but doing very little) all the way to our mailbox and back inside. I am guessing it is at least 100 yards total. I am thinking if he does this every single day, he will get stronger and stronger, and hopefully able to do it with less and less assistance. So, here is how you avid Luke followers can help us out. I would love to fill that mailbox with letters, pictures, postcards, whatever for him when he walks out to check it, to keep him motivated. If you want to help out by mailing him something, send me an email to cmcsmg@aol.com if you do not have our address, and I will get it for you. Thank you so much for helping support Luke on his journey!! We appreciate it more than you will every know.

Too Long..

So sorry for the lack of updates lately, it seems like life is just passing by in the blink of an eye. It seems like just yesterday we were laying on the beach in Coronado, now fall is upon on us, and before we know it Christmas will be here. We have been super busy!! Here are some pics of Luke at our annual blackberry picking event:



We also had to have sort of a surprise IEP meeting for Luke. He had an incident where he was grabbing another student, and has also continued to grab his teacher and aides. By the Grace of God we had met with a new neuro-psychologist just a week prior. He told me he is very well versed in dealing with school behavior issues should the need every come. He attended the IEP meeting via phone conference and had some great suggestions that everyone on Luke's team agreed to try out and implement some changes. Please pray they work and Luke will no longer have the behavior issues at school. Here is Luke's recent school picture. I think it turned out great!


Other than the behavior issues, things have been great. Thanks so much for checking in! I hope to be better about updating in the future!

Scare at School

Yesterday Luke had a bit of a scare at school. I received a call mid-morning from the school nurse telling me Luke was unresponsive. So of course I freak out. I asked her if he was breathing and had a heart beat, she said yes. She said he would just not wake up no matter what they tried. It happened at lunch. His teacher could not get him to respond at all, so she brought him to the nurses office. The nurse was concerned enough that she was going to call 911. The bad part was Tuesday I was at work in Gilbert, so it would take me awhile to get there, the good news was Mike was also there so he could drive, as I was a mess. On the way there I calmed down a bit, and called the school back. By this time the Fire Dept and Paramedics had arrived. The Fireman told me Luke was still unresponsive, and they were going to go ahead and take him to the hospital, where did I want them to transport him to? I start freaking out again, then he says, "Oh wait, we think he is coming around." Sure enough I could then hear him doing his Lukey yell in the background, huge sigh of relief. So they said they would check his vitals and decide what to do when Mike and I got there. I told Mike we were going to get there and Luke was going to be so excited to see all of the fire men there for him. Sure enough we walk into the nurses office to find Luke sitting up, hamming it up for the firemen. They had the stretcher there ready to transport him. After checking his vitals though, they found everything to be normal. All this to say, the only thing we can think it may have been is a seizure. Luke has not had seizures before that we are aware of. However, the doctors told us from the beginning seizures are very common in cases of TBI, especially as kids start to enter puberty. Luke has the same teacher he had last year, so she knows his mannerisms, knows him, and knows when something is not right. We fully trust her. I also know from experience he does not like to be woken up, and will hit and fight you. So for him to be completely unresponsive is not normal at all. After this, he slept for almost two hours straight. Please pray he is not having seizures, and that is was just an isolated event.

Back To School

Luke started back to school this week. Thankfully, he is at the same school and with the same teacher and aides he had last year. The only difference is, this year, he will be going all day every day. So far his first three days, he has had good reports from school. Pray this continues. He has also not had near the behavior problems he had been having at home. Thanks for the prayers and pray this continues. Here are some pics from the first day back (sorry they are so small, not sure why that was:)

Showing us six fingers for sixth grade

With his sisters before school

This week we will be adding Physical Therapy to Luke's schedule, one day before school, and one day after. Please pray this will not be too much for him, as he really needs the PT too, he has been making some great progress here lately.

Thanks!

Thanks for all the prayers yesterday! Luke did great! In fact, probably the best he has ever done:) The worst part of the trip was the drive there and back with a crazy driver, and of course the wait to get back into the states. Thanks again...God is Good! Now we pray for healing and restoration from these cells!!!

Prayer Request

Luke will be getting another round of stem cells this Tuesday at 12:00. Please pray for this procedure. Pray it will bring more restoration for Luke. Also pray Luke will be well-behaved on the flights and while we are gone. Thank you so much for continuing to follow us on this journey:)

Thank you!

One of Mike's mom's friends has a grandson that plays for the Ranch Cucamonga Quakes. They are part of the Los Angeles Dodgers farm system. She had asked her grandson to sign a ball for Luke for his 11th birthday. He went above and beyond and had the entire team sign the ball. Thank You Vera and Steve for this kind gesture! The ball is proudly displayed in Luke's room now. Go Quakes!!

Happy 11th!

Here are some pics of Luke's 11th birthday:






We have a couple prayer request:

**Luke has had HORRIBLE behavior lately. Look at any of our arms and you will see the scratches he has left from pinching us. That kid is STRONG!!! We can not really attribute the change in behavior to anything. Please pray we can find an answer to it SOON though before school starts again!!

**Luke will be going back for another Stem Cell treatment in Mexico on July 19th. Pray we see results from this. The same Dr in Mexico will be doing the injection of the stem cells, but a Dr in the US, who has taken us across once, and who we really liked, will be getting the stem cells from the US.

Thanks so much for checking in and have a Happy July 4th Weekend!

Vacation Time!

Warning: Long Post:)

We just returned to this wonderful AZ heat from a great vacation in San Diego. We had such a good time. We stayed in a house on Coronado, so we were able to go to the beach, and do a few other things. Check out the pics!

We toured the USS Midway Naval Ship. Here are Luke and Mike looking out from the ship.

Pap and Luke getting some ocean therapy.

Mike and Luke checking out a deer at the zoo.

Luke rockin' his aviators.

Luke with his shell collection.

Feeding the ducks that came to the house from the golf course across the street.Luke loves playing (and sometimes throwing) the sand.

Now onto some other Luke news...he has been showing off lately. Sunday night we had a Father's Day dinner at my grandparents house. Luke was showing off his standing up skills. Everyone was clapping for it so I told him to bow. He thought that was funny:)

Here is what we caught him doing the other night. This is the first time he has reached up like this. Now he thinks it is funny to go over the turn off the TV. Notice how lefty is helping out.

We are gearing up for a busy week of birthdays around here. Luke turns 11 on the 27th, and Lynsey will be a teenager on the 13th!! Where has time gone? Look for some bday pics next week. Thanks for continuing to check on Luke:) God Bless!

Summertime!!

Summertime is here! We made the decision earlier this year to let Luke have a break from the intense therapies we had been doing ever summer, and hopefully let him have more fun this break! So, we have two girls that are each helping out with Luke's therapies/lessons 6 hours per week. I am hoping he will show just as much progress. It sure beats driving an hour to and from therapies in the AZ heat, and also worrying about shuffling the girls out somewhere. He is also getting 2 hours of PT a week, and will be starting a karate class this Friday that I am excited about. So, at least we don't have to get up early and go somewhere, but the days are still pretty busy for him! Pray we see only improvement this summer and no regression:) Here are some recent pics of our hero at his end of the year school performance:



Here are some words Lynsey wrote about her little brother:

when i look at him, i see hero. i see never giving up. i see love. i see what i cant describe into words. i see strength. i see inspiration to all. i see little brother.

Here's to a great summer filled with progress and great times!! Thanks for continuing to follow our journey:)

Our Rockstar!

I had Luke's annual IEP (individualized education plan) meeting last week, and let's just say that kid is a ROCKSTAR!!!! I have been following a lot of blogs of families who dread these meetings every year because of the fight that usually results with the school district regarding the results, etc. I have said all along, we could not be more pleased with Luke's transition back into school, and I think his IEP shows the direct results of that. Luke, for the most part, met almost every single goal that was set for him this year!! To take it back a few steps, when Luke was originally evaluated to go back to school, which I believe was in 2008, some of the things they did to evaluate him were have him throw a ball, try to sit up, blow bubbles, stick is tongue out, my how far he has come since that original evaluation. Note: We did not send him back to school after that original eval, we waited two years, to concentrate on therapy. Here is a breakdown of what/how Luke is doing:

Occupational Therapy- He has been busy drawing shapes, learning how to use scissors again (with his left hand). Some of the main goals he met here were drawing various shapes, and integrating lefty into more tasks, which he continues to do great on!

Physical Therapy-He has been working on standing balance and walking with minimum assistance. I am pleased that next year, we will be working with Luke using his walker more at school during the school day to get around the classroom instead of his wheelchair.

Speech-The therapist was very pleased with how Luke is doing. She said he is ready, willing, and able to communicate his needs. Some of the future goals for Luke include, saying more than just yes/no, using a communication device which will speak in sentences for him, and sequencing more sounds. We are going to start working on really having Luke say hi/bye for the next words he will hopefully say by mouth, along with yes/no.

In Class goals-Luke is able to read some basic sight words when they are presented to him. He is also matching words with pictures, and beginning to learn to even spell some simple words using letter cards. He is doing great in math using a ten frame to count up to 12, and even scored 100% on the addition problems that were presented to him. Next year he will begin to work on word problems involving real life situations (money,) subtraction, spelling and using more words, writing his first name.

So, I am very excited with how Luke has progressed this year. A HUGE thing for next year, is he will be going all day every day, instead of this year only go for a full day on Monday and Friday. Way to go Luke! We are so proud of you and so thankful for your amazing teacher, aides, and the wonderful team that works with you everyday at QCMS!!!

"A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles." -Christopher Reeve

He is Risen!

He is Risen...He is Risen Indeed!!!! Happy Easter everyone!

This morning as Luke was going thru his Easter basket using both hands, I thought to myself there is no way he was doing that last Easter. So, I went thru the pics from last year, and look at the difference:

Last year, not using his left hand at all, in fact it is contracted up against his body.

This year, using lefty to help rip open the package. In fact, we call him shredder in our house because he loves to rip and tear up stuff.

Using both hands to open up his eggs.

Sunday is coming....

Today is probably the darkest day in the history of man kind. The day that Jesus died on the cross. It was no doubt the most darkest, most painful, most horrible, most discouraging, most awful day of His life. It was the day he died, and to many it looked like the enemy had won. We all know that was not the case, for God had other plans. They may have put him in a crave, blocked it with a stone, but as we all know, Sunday morning was the beginning of a better story!!

The Easter story teaches me that no matter how frustrated I may be when Luke seems to have reached a plateau, or is really acting out, or just frustrated by what he should be able to do and should be doing, or how long it has been since he got hurt, there is a greater plan. We will not be stuck on Good Friday forever. Someday, our Sunday is coming. We know He will have the final say in this story, and it will be good. God bless you all this Easter weekend...I am excited because Sunday is coming, and HE IS RISEN!!! Death could not hold him!!

Frustrated

We finished up this week with all of Luke's appointments for awhile, hopefully. He had an MRA for his aneursym, and it is stable. Now, he will not have another one for three years, which makes me nervous. We also tried out a few different therapy places to try and find a good one for Luke to do some intense work this summer. I found one yesterday, that I like and am cautiously-optimistic about. We also visited yesterday with the BEST neurologist ever, Dr. Cardenas, at St.Joe's. I honestly have not had a doctor take as much to talk about Luke with me in a long time, he spent almost an hour! He recommended a "mood-enhancing" drug for Luke to hopefully address some of the behavior issues we are seeing. I am very against drugging him, but after talking with Mike's cousin, Shelly, who is a dr herself about it, am willing to give it a try to see what we notice. Hopefully it will be positive:) Dr. Cardenas is also going to talk with the team at St. Joe's that is doing the deep brain stimulation there to see if they feel Luke may be a candidate for it. He tends to think not, but is willing to at least check, which I am thankful for. The bad news came at the end of the appointment when he said effective June 1st he will no longer be able to see Luke, due to a contract he signed since St Joes is merging with PCH, Luke will now have to see a neurologist at PCH. I have not found one neurologist at PCH I like or one who truly understand TBI. Dr. Cardenas did. Honestly, Luke does not have to see a neuro, but I just really liked him because he understands Traumatic Brain Injury A LOT!!! So back to square one on that front. Luke's neurosurgeon, Dr. Manwaring, whom we love also, I found out a few weeks ago is also no longer at PCH. I am guessing now, that is due to the merger too. I am trying to track him down though:) I was really stressing about it because I feel like everything is two steps forward, ten steps back. I found this in my email box last night. I have not gotten on of their emails in a really long time, but this one was right on time, funny how that works! So we are pressing toward the Promise:)

Press toward the Promise TODAY’S SCRIPTURE “...Imitate those who through faith and patience inherit what has been promised” (Hebrews 6:12, NIV) TODAY’S WORD from Joel and Victoria Are you facing a challenge today that seems overwhelming? Through faith and patience, you will see God’s promises come to pass in your life. Understand that the enemy always fights the hardest when he knows you are closest to your breakthrough. He’d leave you alone if he thought you were going to live in mediocrity. If you keep pressing on toward your promise, through faith and patience, you will get there. Don’t be like the Israelites in the Old Testament who were right next to their promised land when they talked themselves out of it! They said, “There are giants in the land. It’s too difficult.” No, today, don’t look at the obstacles in your life. Lift up your eyes because you serve a supernatural God! Follow the example of Abraham who believed God even when his circumstances looked impossible. Remember, God always rewards the people who seek after Him. Stand in faith and keep believing because God will take you places that you never dreamed. Keep pressing toward the promise so you can live in the supernatural victory He has prepared for you! A PRAYER FOR TODAY Heavenly Father, I come to You today choosing to believe Your promises. Fill me with Your faith and patience to press through to victory. I give You all the glory. In Jesus’ Name. Amen.