Day 8 & 9.....Progress

Day 8 & 9.  Erik has taken Dylan to clinic by himself the past couple of days.  Dylan seems to do better with the treatment when little brother is not there to distract him….plus he gets all of the attention, so who would not like that?  He seems to be getting more and more used to the process every day.  Today marks two weeks since Dylan’s last seizure! PRAISE GOD!! We have not seen any type of seizure activity and we are really excited about that! Let’s hope and pray that those are something of the past.  

Yesterday, I was watching Dylan play a new block game on the iPad.  He has not played it many times and yesterday was probably his 3rd time on it.  I watched him play it the day before and he really didn’t get it.  There are shapes that go around on a conveyer belt and you are supposed to grab the shape that goes up on the stage to create an animal or object.  The game prompts you by flashing the shape with a grey duplicate of that shape.  The first time when I watched him play, he just kept picking up random blocks and trying to put them on the spaces.  Even after I showed him what to do, he kept just doing it randomly and was not really paying attention.  Then yesterday, he was sitting next to me playing it and I noticed that he “built” the animal quite quickly.  I thought it was a coincidence, so I just sat and watched him for a while.  He did it again and again and was very intent when looking for the correct shape and was able to complete the task quickly and efficiently.  Erik and I were both very surprised.  PRAISE GOD FOR PROGRESS! Something clicked in his little head.  Erik told Dr. Alex about the things we have been noticing lately and he was very pleased.  He said he was looking forward to seeing some changes in his EEG next week!! Here's a video of him playing :) 

After clinic, we packed our lunches and headed to Sea World for the day! Last week when we went, Dylan could barely hold still for 5 minutes during the show—which was completely normal for him.   Today, he sat through two 20 minute shows! He was still a little wiggly, but a lot better than even last week.  We saw two different shows that we did not see last week.  One was a pet show that was really cute! They had dogs and cats that did different tricks and ran around and the boys thought it was hilarious! From there, we headed straight to the dolphin show.  Dylan was not too thrilled with the dolphins, but Andrew loved them! Part of the show includes acrobats that jump off the high platforms into the water….Dylan LOVED this part of the show! He was laughing and clapping and screaming with delight.  Everyone around us was equally entertained by Dylan.  He has the tendency to entertain others everywhere he is! 

One of the biggest changes we have noticed with Dylan is his energy level.  Although he always has an abundance of energy, it has definitely increased.  Usually, after an active day, Dylan is ready to calm down around 3 or 4 and will even take naps around 1 if we are home.  Lately, he is the energizer bunny on red bull! Seriously.  Crazy.  He is having a hard time falling asleep right away at night too, which normally is not the case.  Thankfully, he still sleeps really well through the night and is his bright and cheery self at 6 am ready to start the day with all engines roaring! We love seeing the changes, and although they are small, they are promising!! 

I will leave you with some photos I took the other day before I shot my cousin’s graduation photos.  ENJOY!!! Thank you for all of your continued prayers!

Day 7....Chugging Along

Day 7….Today was Dylan’s 6th treatment with MRT.  We were really hoping to see changes by now, but we have not seen anything too drastic.  He seems to be using longer sentences in the past few days and using a lot of describing words.  Dylan usually speaks in 3-4 word sentences but does not use descriptive words.  On Saturday, we were on the freeway and a motorcycle went speeding by.  Dylan said, “Whoa!! That was a fast car!” Erik and I both looked at each other in awe of what he just said.  Progress?? Yes.  Progress from MRT?? Hopefully!! It is hard to gauge his activity level and if it has increased because we are in a new environment and he is ALWAYS very active.  He is the energizer bunny.  If I could bottle up just a tenth of his energy, I could sell it for millions! 

We are waiting anxiously for next week’s EEG to see what is going on in that little adorable head of his.  We will have the EEG on Monday and then meet with the doctor on Thursday to go over the results.  I think Dylan is finally getting used to the treatments and what is expected of him.  Erik still has to hold him still and close his eyes during the 6-8 seconds while the probe is one his head, but he is not fighting it as much.  Every day he reacts differently…so hopefully we are heading in the right direction!! He loves the Jackies! There is a speech therapist there named Jackie and the girl who administers the MRT is also named Jackie.  He loves the attention.  When one of the ladies is talking to Andrew, Dylan pipes up and starts being super silly to get the attention back on him.  He is such a little entertainer.  

We had a great weekend off from going to clinic.  On Friday, we got to try a new restaurant with friends who came out for a few days for vacation. The food was amazing and the company was even better! We loved seeing familiar faces and getting to enjoy a great meal with them.  It is definitely nice to be located in a vacation destination…we are enjoying all the visitors!  On Saturday, we took the boys to Sea World.  They have a promotion right now that if you buy a one day ticket, you get to go for free the rest of the year! It was a great deal and we are excited to be able to take the boys for a few hours every week.  Andrew was in awe of all of the animals and really loved the whales.  Dylan liked running everywhere and really enjoyed the few rides that they have added to the children’s area.  We hit most of the areas of the park but missed a few shows.  We can get to those next week…or the week after.  

It is nice being able to just relax and not have to squeeze everything in within a tight timeframe.  I feel that every time we come here for vacation we are rushing to get everything done.  Now we can take our time and explore and see things we would not normally have time for.  On Sunday we tried a local church and it really made us miss our church family from Surprise.  We are hoping to find a solid church to attend while we are here.  Afterwards, we were invited to a friend’s house for lunch and had a wonderful time catching up with an old friend of Erik’s.  We also got to see Erik’s cousin Kelsey and her friend who were staying with the family.  Yesterday we headed to a new beach to get some graduation photos of Erik’s cousin Kelsey.  It was fun to try a new beach and capture some photos of the boys too! I will probably post those tomorrow after I can edit a few!   

Today, we met up with my sister and her husband before they returned home from their vacation.  Uncle Joshy and Auntie Mandy are two of the kids favorite people! They were so excited to see them! After grabbing lunch, we headed to Cabrillo National Monument in Point Loma.   If you have never been there, it is a great spot! Beautiful views and they have some really great tide pools to explore.  The kids really enjoyed it too! It was fun going somewhere that we have never been.  The boys loved seeing all the crabs in the tide pools and had a great time exploring.  It was really sad to say goodbye to our family, but I have a feeling they may have to take another break and come and see us again! We are so blessed to be able to see more visitors tomorrow who are here on spring break!  

I think that is all for now.  I will leave you with some photos of today from our little outing :) ENJOY!! 

Day 5....Adjustment

Day 5.  I cannot believe we have already been here a week!! Dylan was still unhappy with us today and started getting pretty frustrated towards the end of the therapy.  He was fed up, and he was not quiet about it! But, now he has a weekend off :) 

As we were doing the treatment today, we were talking with Jackie (the girl who does the treatment on Dylan), and we were discussing about different kids that she has worked with.  She said that she did not want to scare us, but many of the kids have needed 5-6 months of treatments and in some cases, more.  We have initially prepared ourselves for 3 months knowing that it could be less or more.  I can’t lie, when she said that, my heart dropped.  Of course we will do everything we can to do what is best for Dylan, but we miss our home.  For those of you who don’t know, we rented out our house for Spring Training this year.  We moved out of our home at the beginning of February and have been living out of suitcases since.  I am not complaining, but just being honest….I miss home. I miss my bed.  I miss the normalcy of every day…and we have only been here a week.  Please pray for me specifically.  I tend to be a HUGE planner, and all of this is completely out of my control.  I know that is exactly where the Lord wants me and is teaching me and stretching me, but it is still hard.  Pray that we can get into a new routine and a new normal, for now.  The boys are so confused, and Andrew keeps asking to go home.  We are really enjoying the perks of being on the coast and plan to take full advantage of that…so it’s not all too bad :)  

Sleeping in the same room with the boys presents it’s own challenges.  Overall, they both sleep great, but Andrew has crazy dreams and talks a lot in his sleep.  Last night he woke up screaming “NO! NO! NO!” I felt so bad for him, maybe thinking he was being chased by a something or someone….but then he continued…”Don’t take my sandwich! That’s my sandwich!”  Oh Andrew….such scary dreams :) I got him settled down and assured him that nobody was taking his sandwich and returned to bed and to my snoring husband.  What is it like to be a man and NOT HEAR A THING?? EVER?!? I would not know…I hear EVERYTHING.  

Today we headed down to Horton Plaza in downtown San Diego.  I love it there. We walked around and enjoyed being outdoors and window shopping.  They are doing a lot of construction outside of the mall, so the boys enjoyed watching the big diggers gather dirt and dump it.  Andrew was enthralled.  Dylan was enthralled with something else….THE DOORS! The Gap there had automatic doors…and oh boy, Dylan was ECSTATIC! I took a little video so you can see how much he loves them! 

Thank you for checking in on us and following along on this new adventure!! 

Day 4....EEG Review

Day 4.  Today went a little smoother.  But still not the best.  Hopefully after a few more days, Dylan will stop fighting us and just give in and relax.  The therapy does not hurt him at all, he just has to hold still, something he dislikes very much! 

We met with Dr. Alex today.  He is one of 3 doctors that are in charge of the program.  He is the one who insisted that Dylan gets a spot in the study, even though the other doctor running the program has a ton of candidates.  Go Dr. Alex! We got to see Dylan’s EEG today and were able to go over it with the doc.  I will try to explain it the best way I can in normal human terms.  Basically Dylan’s cells in his brain are only firing off at a low level and not what they should be.  The average brain cell range is between 8-13 and Dylan is barely at a 6.  He said that from the EEG, they would expect to see Dylan have significant delays because his brain is just not functioning the way it was meant to.  He said that his EEG does not look like the typical case of a child with autism either.  That was interesting.  We have never had him diagnosed with anything other than a cognitive disability (mental retardation), but have wondered if he was on the autism spectrum. 

This is Dylan's first EEG...if you can read this, then you are WAY smarter than me :) I just want to have a copy on here for future reference.  But basically the blue lines need to go further in the graph....I think??? 

Something else that many of you may not know is that Dylan has been having seizures.  This is new to us.  They started at the beginning of February (and one in January) and he has had 10 that we have seen.  They last about 10 seconds and he is completely “gone” during that time.  As soon as it is over, he is back to his silly self.  The docs don’t seem too worried about it at this time and we are just watching him to see if he gets any worse.  This treatment can also help with the seizures.  With regular EEGs, we should be able to see the part of his brain that is having the seizures and target that with the therapy to help.  His last seizure was a week ago today, so that is good.  

I finally understand a little more about what the therapy does.  Basically the magnetic stimulus is working out the cells in Dylan’s brain.  They are weak and they don’t want to work hard, so the magnetic shocks are making them work harder.  This is supposed to cause the cells to work harder on their own and then fix the problems on their own in the process.  Does that make sense? The doc talked about one patient they had that had severe autism and was very low functioning.  Two years after being treated, the boy shows absolutely no signs of autism and is a perfectly healthy little boy.  The brain is a magnificent and incredible thing….and no wonder, look WHO created it! We should be able to see a change in Dylan’s cells on the next EEG.  That is what will give us a good baseline of whether or not it is working for him.  Please pray with us that his brain does well at the “Gym”….they need a good work out and they need to get on board! I cannot even begin to tell you how incredibly amazing it would be to have a conversation with my little boy.  I desire that so much.  I know that if this does not work, then that is ok too.  But I know that we serve an almighty and powerful God who can do more than we can ask or imagine.  So I am asking for a miracle.  Can you pray with me and ask for one too?!  

And here are a few photos from our beach fun today...the kids completely wore themselves out and passed out at 6! YAY!!! One of these days I will bring out my big girl camera, but for now, iphone photos will have to do :) ENJOY!! 

Day 3....Getting into a Routine

Hi everyone! Today was our third day going to the clinic.  Dylan and Andrew love running up the stairs to see who gets to open the door first.  Dylan is a big fan of doors. BIG FAN.  I don't know how else to explain it other than he is fascinated with them.  If we go to a store with automatic doors, you would think he was at Disneyland.  He will stand there and jump up and down and flap his arms with excitement to watch them open and close.  I love that he is so easily entertained! That kind of brings me to my next thought....I don't want that to change.  I am so torn about this process.  I know that if it works, it could help Dylan in so many ways, but I just don't want him to change in some ways either. He is such a goofy and quirky kid, and although those qualities drive me nuts sometimes, they are also what I love about him so much.  I know that may sound silly...but I just want Dylan to still be Dylan.
So anyways.....I don't think he will ever stop liking doors :)

Today Dylan sat on Daddy's lap so that I could help corral the other munchkin and distract Dylan. They need him to close his eyes during the short bursts (6-8 seconds) so there is less stimulation. While this may seem like an easy task....it is not for D.  When it is not his idea or something he wants to do, he fights it with all of his might.  We had to take off his shoes (aka, his weapons) and his glasses so that we could physically close his eyes for him.  He was NOT happy with us.  He started to calm down about half way through.  I think that we are learning new tricks with him every day.  Tomorrow, we will probably take off his shoes and glasses while we are in the play room waiting for his session....that way he will get used to them being off.  That is the plan for tomorrow!

We had a relaxing day after clinic and got lunch in town and spent way too much money.  It is expensive here!! After naps, we walked down to a neighborhood park about 10 minutes away.  It was GORGEOUS there! Huge trees and a large area of green grass and a small playground for the kids.  Erik brought along his favorite toy too--his frisbee! We played frisbee for almost two hours and just enjoyed being outside.  Dylan and Andrew thought it was hilarious when one of us missed the throw or tripped over ourselves trying to catch it! They both tried to play along but can't quite get how to throw it yet.  It was a beautiful evening and we really enjoyed it! We feel so completely blessed to be here right now.  We feel that this is exactly where the Lord wants us and He has BIG plans in store for our family!

Day 2.....First day of MRT

Hi guys!

Well today went MUCH better than yesterday!! The doctor was able to get the perfect amount of information from his EEG--PRAISE GOD!!! Dylan's next scheduled EEG is on the 23rd.  The docs say that we should be able to see a difference in Dylan within the first 1-2 weeks if it is working, but some people may take longer.  Sometimes they can see a difference in the behavior, and sometimes the difference shows in the EEG before it can be seen in the person's behavior.  One of the side effects is extra energy....LORD HELP ME!! I do not think it is possible for Dylan to have any more energy.  As I am writing this, I am trying to get the kids to just sit for 5 minutes and watch a show instead of tackling each other incessantly! Life with boys can be challenging sometimes :)

So today we had his first actual treatment with the MRT.  We did not know how Dylan would react to having the wand against his head.  At first, he was a little apprehensive, but we brought reinforcements this time (Ducky and M&Ms) and they helped tremedously! The session lasts approximately 30 minutes.  It consists of 30 intervals of 8 seconds with a 52 second break in between.  Ideally, it is best if Dylan sits back and closes his eyes to avoid stimulation, but at this point in the process, we will take anything.  He actually did quite well after the first couple of times.  You can see in the video that they just place the magnetic pulse machine on his frontal lobe.  They will move it to different parts of his brain as needed.  We will go to the treatment center every weekday and rest on the weekends.

 

Dylan is such a little flirt and really enjoys the attention he gets from the ladies in the office.  Today, he was smelling their hair and rubbing it all over his face.  He often does this with my hair.  He is such a goof! He already has them wrapped around his finger! One of the challenges when doing the treatment was keeping Andrew busy or away from me.  He is such a mama's boy and was freaking out that I was holding Dylan and HAD to be on my lap too.  We will have to maybe keep him with Daddy in the play room tomorrow.  That was a little hard to juggle today!

We headed to the park and beach again after therapy and had lunch.  We could really get used to this!! We were not prepared for any swimming, but the boys wanted to splash around anyway.  Enjoy the video! Andrew is a nut and Dylan enjoyed picking up the wet sand and throwing it into the water.  Tomorrow we plan on spending the whole day there and will be more prepared.  We feel so blessed to have a little vacation time while going through the therapy.

Thanks again for all of your prayers!

Day 1--MRT Treatment

Hi guys! Well, we are getting settled here in California in our new home away from home.  I guess if we have to be away, La Jolla/San Diego area is not the worst place to be!! When we originally found out that we would be coming here, we started looking for places to stay.  Everywhere we looked was around $1000 a week!!! We knew that would be next to impossible for us to afford, so we prayed for a place to stay.  We were amazingly blessed with a condo that is just 10 minutes from the treatment center and 10 minutes from the beach!! Best of all, the owners are letting us stay here for FREE.  If that is not a God thing, then I don't know what is! We are completely blown away by how He has provided for us thus far and are excited to see what He has in store!

 Today was our first day going to the treatment center.  The staff was really nice and everyone fell in love with Dylan immediately.  We met with an amazing speech therapist that is here donating her time and the boys had a fun time playing in the playroom with her.  On the first day of treatment Dylan had to get an EEG.  An EEG is a test that detects electrical activity in your brain using electrodes.  Your brain cell communicate via electrical impulses and are active all the time, even when you're asleep.  This activity shows up as wavy lines on an EEG recording (BTW, I totally stole that description off of the internet:)  In order to get the EEG, they had to place a cap on Dylan's head with two suction cup-type things on the front.  If you know Dylan, then you know that this was no small task.  After they tried to bribe and convince D to try to put the cap on with no luck, we had to force it on him.  I had him on my lap and he was fighting with all of his might.  Now, Dylan may look small, but I am pretty sure he has the strength of a teenage boy! HE IS STRONG! After about 10 minutes, they finally got the cap in place and he continued to scream and fight for another 10-15 minutes....we were all exhausted.  Once the cap was on, they had to clip little things to his ears....ya, that went over really well! Then they proceeded to put gel into all the little holes of the cap....again, more fighting and yelling from the abnormally strong little 5 year old.   He finally settled down and relaxed a bit in my arms, but I still had him held down in case he tried to pull off the cap (he tried about 10 times!).  In order to get a good reading, they need the patient still and closing their eyes for at least 20 seconds....I just laughed at them.  At least he was still for a while.  I am hoping that they were able to get some good readings from the times he was holding still.  I looked over at the screen a few times and it looked like Dylan had been coloring on it! The lines were EVERYWHERE!  Dylan was very relieved when the cap was off and all of a sudden, he was best friends with everyone again.  I am glad he forgives so quickly :) 

You can see in the photo where the suction cups were on his head.











Since it was such a traumatic morning, we decided to go to the park and the beach after naps to let the boys get some energy out and take some stress off of mommy and daddy.  There is a big park right next to the beach about 10 minutes from where we are staying.  We packed up a dinner and had a picnic with an ocean view...it was amazing! It was just what we needed! We may just have to do it tomorrow....and the next day....and the next!

Tomorrow, Dylan will start the MRT treatment as long as the doctor was able to get a good reading from the EEG.  Please pray that they did! I really do not want to go through that again...although he will be getting them often to track his progress.  Please pray that Dylan will get used to the EEGs and that he will be more cooperative.  We really want this treatment to work and think it could really help him! Thank you all for your prayers and financial support.  We appreciate all of you!! 

Exciting News!

Hi friends and family!! We have some exciting news to share with you!! About 5 months ago, Erik and I were introduced to a therapy called MRT that they are doing at the Brain Treatment Center in California.  They are having success in treating kids with autism and adults with PTSD.  We really wanted to try and get Dylan over there, but the therapy was too expensive.  Fast forward to two weeks ago and that is when we got a very unexpected call! The Brain Treatment Center wants to do a study on how the therapy works on kids with "chemo brain" from leukemia and they wanted Dylan to be a part of the study group. This was totally unexpected and could only be described as a "God thing".  We are packing up and heading to San Diego for two weeks in March while Dylan gets a trial of the therapy to see if it will work on him.   IF it works, we will be traveling back and forth or most likely living there for a couple of months.  As you know, San Diego is a very expensive place to stay.  If anyone knows of anyone who has a property where we could stay or  could rent for a good price, please let us know.

We are really praying that Dylan's brain responds! When we get there, they will do an EEG and get a mapping of his brain.  At the end of the trial, they will do another EEG and compare them to see if it is working.  We should also be able to see results in Dylan's behaviors/mannerisms within the first week.  Many parents reported huge changes within the first couple of weeks in regards to focus and attention.  So what is MRT?  I am going to paste the info right off of their website along with some links to some pretty cool testimonials.

How do you treat autism?

We treat autism with Magnetic Resonance Therapy (MRT℠ treatment), a protocol that reduces sensory overload in the brain. MRT℠ treatment is noninvasive and painless, with mild side effects, when present. These treatments are guided by EEG, a brain scan that shows how effectively the brain understands incoming sensory information. 

What are the potential effects of the treatment? What can I expect to see in myself or the family member receiving treatment?

MRT℠ treatment works to improve how the brain processes sensory information in addition to how it communicates this information. Response is variable based on the disorder being treated, as well as severity of the disorder. In autism, the goal is to allow the brain to settle in a more calm state so that it can attend to and interact with the outside world without being overloaded. Additionally, as ASD is a spectrum disorder and every brain is unique, one patient may improve in one area while another patient improves in a different area. It is also possible for a patient to not improve at all.

In severe cases, we have observed children going from 1-2 hours of sleep per night to full nights rest consistently. Eye contact improves, as does focus and attention. There have been cases where nonverbal children begin to babble and speak following only 2 sessions of MRT℠ treatment (and others after 30 sessions). Patients feel calmer and report no longer feeling overwhelmed by their senses. Bright lights no longer hurt patient's eyes: fans and loud noises are bearable and conversations can be held because other sounds are not so disturbing. Additionally, children who are picky eaters become more open and eager to try new foods, often gaining weight and growing several inches within several weeks of starting treatment.

The number of possibly improvements is innumerable, from social to cognitive. Once the brain is allowed to appropriately and effectively handle the information given to it, change can potentially be seen in all aspects of the spectrum disorder that is autism. 

Every brain is different, and this must be taken into account when treatment is given. Response is variable. 

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Starting from what age can you get treatment? My son is autistic and he's 3 years old right now. I'm wondering if he can get treatment here or not.

We start treating children as young as 2 with Magnetic Resonance Therapy. MRT℠ treatment is considered a safe procedure once children turn this age when used appropriately. The brain goes through a large amount of change at a young age, so as long as we know the age and can record a good quality EEG, we can proceed with treatment once approved by our psychiatrist.

How many sessions do you usually do? How long is each session?

Our program is divided into two phases. The first phase is designed to determine if MRT℠ treatment is effective and a possible treatment option for your child. The second phase is the bulk of the treatment. 

The first phase takes a week. We start by taking an EEG and having our psychiatrist meet with your child to determine a baseline and allow us to see what is happening in the brain. If our psychiatrist approves MRT℠ treatment treatment, we administer MRT℠ treatment for five sessions, once per day, over the period of a week. Each treatment session takes 30 minutes. At the end of this period, we take another EEG and have our psychiatrist meet with your child once more to determine if the MRT℠ treatment had produced any neurophysiological changes and also if our psychiatrist sees any change in the child. These measures combined with your opinion of your child's progress determine if we will go forward with a month of treatment.

The main course of treatment is 20 sessions of MRT℠ treatment. We administer EEGs as needed and schedule MD appointments as needed. We span these treatments over the course of two months: one MRT℠ treatment session per day, five days per week.

This all adds up to 44 sessions of MRT℠ treatment, approx. 9 weeks. 

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Is the MRT℠ treatment procedure painful? What does it feel like?

No, there is no pain involved in this procedure. For each magnetic pulse, patients feel a sensation similar to a finger tap on the scalp under the MRT℠ treatment coil. Additionally, the scalp may tingle during treatment. Although MRT℠ treatment stimulates cells in the brain, there is no sensation felt by the brain from this stimulation. In some cases, the MRT℠ treatment coil may be placed over a muscle or muscle group on the head, which may be uncomfortable for the patient, as stimulation will cause the muscle to contract – this is avoided when possible. 

How long does the treatment last?

Although there have been no durability studies on patients with autism who have received MRT℠ treatment, current research indicates that robustness of response is substantial. A six-month follow up of 99 patients with depression who benefitted from MRT℠ treatment indicated only 10% relapse rate after 6 months. 

In our experience, response durability is related directly to number of MRT℠ treatment sessions administered. If only given one week of treatment, any changes seen may disappear by 2-4 weeks' time. When given more stimulation: an additional two weeks to a month, this durability increases exponentially. Every brain is different however, and rate of response as well as power of response varies by patient. Additionally, with the addition of maintenance sessions or continued treatment, response power and durability have greater opportunity to improve. 

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What is the success rate?

We have observed response in approximately 40% of ASD patients. A "responder" is a patient who has improved by at least 30% in clinical scales in response to treatment. As autism is a spectrum disorder, there are many different aspects of the disorder, and in many cases improvement is seen, but does not pass this 30% improvement threshold to qualify a "responder," despite what clinical benefit they received.

What are the potential side effects of MRT℠ treatment? Is there any permanent risk to trying this treatment?

MRT℠ treatment has mild side effects, if any.

One possible side effect is a tension headache. This can be caused by the stimulation of muscles in the forehead or on the skull under the area of MRT℠ treatment stimulation. These muscles become sore if they are repetitively stimulated, just as your bicep would become sore if curling weights for an extended period of time. These tension headaches disappear after 2-3 days of treatment as the patient becomes more acclimated to stimulation.

A second possible side effect is an increase in energy. One of the neural pathways that MRT℠ treatment stimulates is the nigro-striatal pathway, which leads to the release of the neurotransmitter, dopamine. The increase of dopamine in the brain leads to more energy and awareness. In some cases, children may become hyper in response to this. Hyperactivity in response to this dopamine normalizes after several days of rTMS.

If used improperly and outside of accepted treatment protocol, seizure may occur. The few reported cases of seizures in individuals undergoing MRT℠ treatment were either before accepted stimulation guidelines were set, or it was determined that the seizure would have occurred if no treatment had been done. However, when used within proper guidelines, seizure risk and occurrence is negligible.

There have been no reports of permanent damage from trying MRT℠ treatment. Brain activity shifts when exposed to MRT℠ treatment, but only after many sessions of MRT℠ treatment is a more permanent shift seen. If any of these changes are negative, simply discontinuing treatment is enough to allow the brain to shift back to a pre-MRT℠ treatment state.

http://vimeo.com/66453128 

http://vimeo.com/66453214 

http://vimeo.com/61248639


We are really excited for this therapy for Dylan! We want to give him every opportunity that we can and we think this could be huge for his continued development and growth.  Please join us in praying for a place for our family to stay, for the doctors and therapists who will be working with Dylan, and for our family.  We know that all things are possible with God; He has already done a miracle and healed Dylan from leukemia. We are looking forward to what He has in store for us! Thank you all for your continued support and prayer!!

Love, Michelle

4 years ago, and it seems as though it were yesterday.....

September is Childhood Cancer Awareness month. How appropriate that our little guy celebrates yet another year of health on September 11th.
This is an excerpt from our prayfordylan.com blog on the big day. 09/11/2009
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Thank you everyone for praying today!! The whole process was very anti-climactic :) They basically brought in a syringe of cord blood (that was previously frozen) and then it was given through his broviac. The nurse pushed in 60cc's over about an hour while I held Dylan in my lap. They had him hooked up to monitors to check his vitals every 10 minutes. His blood pressure went up during the transfusion, but that was expected. There was a short time when they put him on oxygen because his stats came down a little bit, but that was due to him being frustrated and crying. There is a preservative in the blood (since it is frozen until use) and it makes the recipients breath smell like creamed-corn. So while Dylan was getting his cells, he was breathing out the creamed-corn breath!! The whole room was filled with the aroma--it was quite strange, but interesting :) So if you would like to know what his breath smelled like, then open a can of creamed-corn and take a WHIFF!! Ha!! I know that some of you are going to do it! :) He is now resting comfortably on Grandma (Erik's mom) and is trying to get some sleep. He has only eaten once today and does not seem very hungry-so his eating days may be coming to an end for a while. He will be put on TPN (total nutrition through IV) tonight, so we will not have to worry about him eating.
THE NEXT STEP:
The next step is the waiting game.......wait.....watch....and pray. The new cells will start to engraft in about 7-10 days. That is when they will be starting to reproduce and fill his marrow with new healthy cells. The final goal is to have 100%donor cells and 0% Dylan cells. This whole process will take about 3 months to be fully grafted. The side effects will be coming soon-usually within 3-5 days. His mucous membrane throughout his GI tract will be stripped, and because D does not have an immune system right now, he will not be able to replace it. That is when the sores will come. On his bottom, his throat, and his mouth--this is unavoidable after transplant--so please pray that it is minimal. IF the sores in his throat get bad, they may have to intubate him and place him on a breathing machine or ventilator. If this is necessary, he will be moved to the PICU and will be unconcious for 4-5 days. He may get a rash, fevers, and nausea. All of these things are to be expected and will all be temporary. They will usually subside within the first two weeks. During this time, Dylan will not be able to have visitors because of his non-existent immune system. This is now the time for his body to start healing itself from the inside. Please pray that the cells engraft quickly and that his body does not reject the new cells and the new cells do not reject his body. They say that children, particulary babies, are very resilient and that he should recover quickly-and that is what we are praying for!! The battle is not over yet, and in a way, we have just begun. Today is day 0-and tomorrow will be day 1 post transplant. We cannot wait to get into the higher number of days!! Thank you everyone for being diligent in praying for our precious boy!!


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Whenever I think back to all of those months in the hospital, I always get overwhelmed by God's amazing grace and mercy. He carried us through so many sleepless nights and days on end crying on our knees. We are so thankful for this amazing little life that has been entrusted to us! Thank you for all of you who have prayed for Dylan in the past and for your continued prayers. We have a long road ahead of us, and we may encounter more trials, but we will do it knowing that the Lord will carry us through no matter what the circumstance. Praise God for healing our little fighter!

A visit to the Neuro Psychologist.....

I think these pictures capture Dylan's personality in a nutshell. He is one of the happiest kids I have ever met. The simplest of things make him laugh and giggle, and that laughter is contagious. He has a almost a magical way of making people fall in love with him. Strangers in the grocery store, at the park, or wherever we go are all drawn to him. He is special. He is our miracle.....

A couple of weeks ago we went to see a Neuro Psychologist. His oncologist believes that some of Dylan's delays are not "normal" reactions to his treatments. Dr. G has dealt with many, many children going through treatments, but nobody has gone through exactly what Dylan did, and especially not at the age he did. Before doing any MRI's or other tests, we were advised to see a psychologist.

I went into the appointment with Dylan knowing what they would probably tell me, but not wanting to hear it. We know Dylan is behind....really, really behind. We can see that he is not like his peers and emulates peers over half his age, including Andrew. We have always been told by therapists that he was just delayed and that he would catch up. This has not been the case.....

The psychologist spent a couple of hours interacting with Dylan and going through a series of tests and games to gage where Dylan was developmentally. If I did not know Dylan was behind before, I definitely knew now. I watched as he showed him pictures and asked him questions and I watched Dylan like I have never watched before. I saw his little mind racing and trying to figure things out, and other times I saw the blank stare on his face as though the Doctor was speaking a foreign language.

After the doctor finished his tests, he concluded that Dylan is functioning at a 2 year old level and below in some areas. He believes that the chemo and radiation had a far greater effect on Dylan's brain than what was expected or "normal". He has officially diagnosed Dylan with a Major Neurocognitive Disorder Due to Another Medical Condition, without behavioral disturbance. The white matter in his brain has been disrupted causing primary deficits in attention, persistence, and short-term memory/memory encoding.

What does this mean to us? This means that nobody can tell us what Dylan will or will not do. Only time will tell. He is currently progressing, but at a very slow rate. But any type of progression is good. This means that Dylan may or may not catch up and be "normal", and more likely that he will always be behind developmentally, and posssibly severely delayed.

Aside from any and all diagnoses....we are thankful that Dylan is here. We have been blessed beyond measure from the joy that this child has brought us. The joy and laughter overshadow any and all of the heartache and pain that we have gone through. He is a blessing. He is perfect in God's eyes, and he is exactly how God wants him.

As parents we always want whats best for our children. We want them to grow up, learn to ride a bike, go to college, get married someday and have our grandchildren. We have to realize that these things may never happen for Dylan and that is very hard, however trivial that may seem. Please pray for us as we embark on our journey with a new perspective. We are learning new ways to parent him and to help him learn. His brain functions a little differently than most. Everything right now is a little overwhelming. We know that we cannot do this alone and that the Lord will be our strength in times of weakness. We know that the Lord has blessed us with amazing friends and family who will not leave our side and will be there to pick us up when we fall. We know that we have thousands of prayer warriors out there praying for our family and our precious Dylan. We know that God is a god of miracles and that He can completely heal Dylan. Whatever the path that God has chosen for us, we will walk boldly and give Him praise. We are thankful that God has chosen us to be Dylan's parents and that we get the privilege to raise this amazing little boy. Thank you for being part of our journey! You are loved and appreciated more than you will ever know!

One year follow up with Dr. Graham

Well it has been one year since Dylan has been in to see his oncologist, Dr. Graham. He is now on a rotation of visits of 6months to a year, depending on how he is doing. Praise God that he is overall a super healthy boy! He gets the normal kid stuff from the germy kids at school, but cancer wise, he is PERFECT!! Doctor Graham was impressed with his overall health and was very happy to see Dylan. In the cancer world, there are so many "bad" cases, so the miracle cases like Dylan seem to cheer everyone up. How can you not love his smile?! Well, that is, if he smiles during the appointment. He always hates going to the doctor. But this time he did surprisingly well while getting his vitals. I do not think there has been a time where he did not bawl the entire time they did them. This time he just observed and allowed the nurse to do her job. I was a little shocked and very proud! He is growing up!

 

Speaking of growing up, Dylan has grown 2 inches and 2.5lbs in a year. Although we are happy there is progress, he is still on the small side and not growing as fast as he should. We have gone to anendocrinologist before and all of his labs were perfect. So for now, we wait and rejoice with every little milestone and inch our little munchkin can get! We have been concerned for quite some time with Dylan's development, mainly speech. He is only using about 15-20 words on a regular basis and seems to not be able to put some sounds together. The doc is not sure why this is happening. He has treated many, many kiddos and this is not too common, at least not this delayed. He wants to do a full developmental screening along with a possible MRI to rule out any kind of brain damage from his treatments. Since we currently do not have insurance for Dylan, this may be a difficult task. It would cost thousands of dollars for both of these things. We are going to try and apply for another government program in April once Dylan turns 4. He was denied last year, but we can try again. Please pray for us to be able to find some sort of affordable program to provide for his needs. God is the ultimate healer and has healed Dylan of his cancer. We know He can also take care of the little details such as insurance too! Dylan will be seeing his eye doctor on March 4th. We are going to attempt to use the new snazzy tool to take his pressure in the office. PLEASE pray that this works!

If it does not work, then we know that God will provide the funds to do the procedure under anesthesia.

We are so very thankful for every single day with our spunky little Dylan. He is a daily reminder of God's faithfulness and grace. Thank you for being faithful friends and prayer warriors! We love you guys!!

The following picture is the last part of the visit and Dylan was DONE! He cracks me up :)

FOR MORE UPDATES, Please visit our family blog at Praskinsfamily.blogspot.com

Dylan's Cord Blood Video

https://vimeo.com/41449761

We thank the Lord every day for our little miracle!

2012 Christmas Newsletter

 

 

What`s New

2012 has been a whirlwind of fun! Our little Andrew joined our family on December 29th last year. I cannot believe he is almost 1!!! He has been such an amazing addition to our crew. Dylan loves having a little brother. And when I say little brother, I only mean by age, because he and Andrew are almost the same size! Andrew is a big bundle of love and can fit into most of Dylan`s clothes. It will not be long before Andrew outgrows Dylan. They love to wrestle, and cannot wait to give each other hugs and kisses in the morning. We had to nickname Andrew, Bubba, so that Dylan could say his name. It melts my heart when Dylan runs into Andrew`s room every morning yelling "Bubba, Bubba!" and climbs up on his crib to greet him. They can be best friends one minute, then tackling each other the next, over some silly toy...but nevertheless, they love each other!

In September of this year, we were blessed to move into a new home! It is in the same neighborhood where we have lived for 3 1/2 years. God's hand was in every single detail of the process and we are blown away by the amazing home He has given us. Our tiled hallways are filled with laughter and screaming as the boys ride their cars and chase each other all over the place. There is never a dull (or quiet) moment at the Praskins! We are looking forward to many, many years in this home and creating new memories!

Erik is still very active in Real Estate and is constantly growing in this ever changing market. Along with Real Estate, he has joined a new venture with his dad in an online business. God has been good and has blessed us with providing for our needs so that I can continue to stay home with our precious little boys. Although staying home with the boys can be challenging some days, it is the greatest job I could ever ask for! Hopefully this year, I will make some time to update our blog with pictures and a glimpse into our crazy life!

Dylan is doing AMAZING! He is healthy and has been in remission for over 3 years!! PRAISE GOD! His glaucoma is under control, although he still has to get it checked twice a year under anesthesia. Because of our insurance situation, Dylan's medical costs are around $5000 a year, out of pocket. Even though we sometimes do not know how we are going to pay for some of those medical needs, God always provides it! Dylan has been going to pre-school 4 days a week for 2 1/2 hours and he LOVES it! He runs down the halls of the school laughing and giggling. School has helped him a little with his vocabulary, but he is still severely behind in many areas. He is a work in progress...just like the rest of us. We could not imagine life without his laughter and silly personality. He is a joy to have around and is a constant reminder of God's faithfulness!