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!

Come and visit our Family blog!

Hi everyone! Thank you so much for taking the time to follow along with our little fighters story. Since we have a new addition to our family, we have started a family blog. I will be posting updates on Dylan's progess along with random family fun also! Thank you for sharing in our journey and being a part of this crazy ride with us!
www.praskinsfamily.blogspot.com

Update

We went to the eye doctor yesterday to try and get Dylan's pressures checked in the office.  We did not succeed :( In order for the doctor to get an accurate pressure, Dylan would have to hold still for 10-20 seconds while the doc puts a pressure probe on his eye. As you can imagine, this was a long-shot to begin with.  Dylan freaked out and screamed his head off.  Even if we could hold his body still, Dylan would have to be completely relaxed and not fight it at all.  We knew this would probably be the outcome, but it was worth a try.  We now have to get the pressure checked under anesthesia as we normally do. He needs this procedure every six months to stay on top of the pressure, just in case it gets too high.  We could choose to not get his pressure checked, but then we would run the risk of it getting high and endanger his eyesight.  Since we no longer have insurance for Dylan, we will have to pay out of pocket for the procedure.  After making numerous calls yesterday, we finally have a total.  The fee from the doctor is $200, the anesthesiologist is $320, and the surgery center is $900.  That is a total of $1420 for a 5 minute procedure!!  As you can imagine, this is a frustrating situation, but it is where God has us right now.  We believe that He will provide for our needs.  We have his procedure scheduled for May 23rd. Please join us in praying that the procedure goes well, and moreover, that his pressures are normal and he will not need any further surgeries. Please pray that God provides the extra money that is needed to pay for the procedure, as well as his monthly eye drops. We feel that at this time, it is best for me to stay home with the boys. It is very important to us that I am here raising them and caring for them and our household. I enjoy being with my family more than anything, and we feel that this is where God wants me.  Raising kids is no easy task, but it is the most rewarding job in the world! Although there is no compensation and benefits, there are lots of hugs and kisses! Thank you for being a part of our journey and for praying for our family. We love you guys!

Time is flying!

Hello everyone! I cannot believe that Andrew is almost 4 months old! Where does the time go??? I am so behind on everything, including this blog. So, for now, I will just start with the newest stuff going on and update everything else later.  First off, the boys are doing wonderful! Andrew is a very healthy and chubby baby! He is so much different than Dylan in every aspect of the word. We are enjoying every moment with him.  Dylan is doing really well too. We just celebrated his 3rd birthday! Do I really have a 3 year old?! Wow, time does fly! It's crazy to think that our little adventure with Dylan started almost 3 years ago. Each year as we celebrate another year of life with Dylan, it is impossible not to think of everything that we have been through with him and how far he has come. He is a constant reminder of God's faithfulness in our lives. Medically, Dylan is doing amazing. He sees his oncologist,Dr. Graham, once every six months; although we would love to visit him more often. He is now getting his eye pressure checked every 6 months also. Other than that, he is growing and thriving, and loving being a BIG brother.  We recently applied for ALTCS through the state. It is a state medical insurance that would cover Dylan and provide for all of his medical needs. But, God had a different plan. Dylan was denied the coverage, which came as a shock to us and all of his therapists. He scored 33 points out of a needed 40 points to qualify. So for now, Dylan is not covered under any insurance. This leaves Erik and I with some decisions to make. Please pray for us as we decide what is best to do for our little family. Our main concern at this point is the eye pressure checks that Dylan needs. We have an appointment next thursday at Dylan's eye doctors office. We are going to attempt to get the pressure in his office. This seems like an impossible feat since Dylan won't even let the doc look in his eye without a fight. At this point, it's our only option that won't end up costing us an arm and a leg. PLEASE pray that we can get Dylan to relax enough to get a good pressure check. Dylan's therapies are also not covered anymore. He was getting physical therapy, speech therapy, and occupational therapy. Thankfully, we have built good relationships with the therapists and they are all being very understanding and have offered to help with advice and ideas on how I can work with him at home. In August, Dylan will be attending the Surprise developmental preschool for a couple of hours a day. As hard as it will be for me to drop off my little man at school, I know that will be the best way for him to continue to develop. When he went through the initial evalutaions, most of his results showed him in the 12-18 month age range. As of right now, his issues are developmental and not disabilities. Everyone we talk to seems to think that he will eventually catch up. He is smart little kiddo, and once he starts to talk, the rest will follow.  We are just thankful that he is here, alive, and bringing laughter and love into our lives.  We know that God has a plan in all of this, and that He will provide.  I think that is all of the "big" stuff for now. Stay tuned for some more posts and lots and lots of pictures!
Thank you for your prayers!

Baby Andrew is HERE!!

We are so excited to welcome our newest addition to the family, Andrew Graham Praskins! He was born on December 29th, weighing in at a healthy 8lbs, 10oz, and was 19 inches long. He is absolutely perfect!! His BIRTHday turned out to be quite an exciting day! I really wanted to try to have a VBAC, which is a vaginal birth after having a c-section. I knew the risks and knew I could very well end up back in surgery for a second c-section, but Erik and I decided it was worth a try! We went in at 8am to get induced due to some insurance technicalities....Oh how I love insurance!! When we got to the hospital, I was dilated at 3cm (I need to be 10 to deliver)....and by 6pm, I made it to a whopping 5cm! Needless to say, I was frustrated. Not only was my body not responding, but little Andrews heart rate kept dropping. Everyone was on edge and Dr. B was ready to do the emergency c-section if needed. He too wanted me to be able to have a VBAC, so he was patient with us and kept encouraging me that I could do it! I was so uncomfortable, tired, and just worn out. I was ready to give up, thinking my body was never going to cooperate. The nurse kept changing my position to keep Andrew's heart rate up. And that is when God said, "its time!". Within a 20 minute period, I went from 5cm-10cm, and Andrew was on his way out!! Once the nurse saw I was at a 10, she ran from the room to get the doc and thats when the fun began. Dr. B was so excited, he ran down the hall and picked up the nurse and swung her around, then ran in the room sand gave me a big hug! He is seriously the coolest doctor ever! Everything happened so quickly. So quickly in fact that nobody had time to get to the hospital! Thankfully, Erik was there, along with my mom and my little sister, Mandy. I was so thankful to have them there to experience the birth with us. After about four pushes, Dr. B told me to look down and I got to see him pull little Andrew out! I immediately started bawling uncontrollably and was overcome with immense joy. It was the most amazing experience I have ever been through! He was absolutely perfect! The rest of the evening was spent with family and friends. Dylan was also able to come and visit his new baby brother. It was really sweet to see Dylan's reaction to the baby. He kept trying to kiss him and just wanted to stare at him and figure out who this new little person was that everyone was excited about. I could not have asked for a better day! Glory to God for blessing us with beautiful and healthy baby boy. Now the REAL fun begins!!

Where does the time go?? TIME FOR AN UPDATE!

Hello!!! Has it really been 3 months since my last update?! Time is flying by!! Well, things around here are a little busy! I have been working part time at Wells Fargo since May, and between that and taking care of a toddler and growing a little baby....I am pooped! This pregnancy is definitely a little more challenging because there is not a lot of down time. Little Dylan sure keeps me on my toes! But I love it!

We just saw Dr. Graham this past week and Dylan labs were ABSOLUTELY PERFECT! Just like him!! We were really encouraged also because Dylan grew a whole inch since his last appointment in June!! This was a HUGE milestone because Dylan has been the same height for about 10 months. He is our little shrimp. We even went and saw an endocrinologist to make sure that the chemo and radiation did not mess with his growth hormones. Sure enough, all of his tests came back completely normal (which is AWESOME) and the verdict is that he is just a little guy!! He is now measuring in at a whopping 32 inches tall and 25.5 pounds. He is definitely healthy and plump, but is starting to look like a little boy and not a baby anymore. He is still not talking (which some say is a blessing in disguise). He says about 4 words....Dada, Dog, Night night, and mamma (but only when in distress!). He communicates very well with sign language and he understands everything we say to him, he just does not verbally communicate. We are going to get his hearing tested soon also to rule out any possibilities of hearing loss...but he seems to hear perfectly well.

Dylan is a ball of energy! He LOVES to run around, especially when he is outside! I am so thankful for the cooler weather because he loves to be outdoors! He even ventured in to the grass this past week during physical therapy and was running up and down the hill in the park. This is another huge milestone because normally he will not even go near the grass and cries when you make him walk on it. Hopefully this was not a fluke and he will enjoy the squishy green stuff!!

Dylan also has a new favorite game. We call it the copy game. But the only catch is that YOU have to copy HIM! He is obsessed with it and it is the cutest thing to watch him interact with others! He usually starts by rubbing his fists together and then he goes to town from there. Some of his favorite moves are crossing his arms, patting his tummy, patting his head, lifting his shirt (usually the women dont participate on that one!), and then drumming on anything and everything that is around him! He gets so much joy out of people playing his game with him and it is quite entertaining to watch!! He has so much personality and loves to show off anytime someone gives him the opportunity.

His favorite toys right now are his Doggy--which travels pretty much everywhere with us, and tupperware! I don't even know why we have a house full of toys! He gets into my tupperware cabinet a few times a day and runs around the house banging it and stacking it. Now only if I could train him to put it back in an orderly fashion...that would be perfect!!

Well, as I said before, I am 29 weeks pregnant, and for those of you who don't know already, Dylan is going to have a baby brother! Yes, another boy in the family!! We are so excited to meet little Andrew Graham! We chose to name his middle name after Dylan's beloved oncologist and we are delighted that we could honor him in that way! Plus, its a really cool name!! Erik wants to call Andrew, Drew, and I want to call him Andy....so the lil guy will have lots of names!! Dylan has no clue about what is about to happen in a couple months or who will be coming! He is going to be in for a big surprise!! I cannot wait for him to meet his little brother and hopefully he is kind and gentle to him....we will have to work on that a lot! He will probably try to smother him with hugs and kisses! At least thats what he does to other babies that he sees :) We almost have Baby Andrew's room finished and we moved Dylan to a big boy bed! He is doing amazing in it! I could not have dreamed of a smoother transition! We ended up buying a bunkbed that can also be converted to two twin beds and kept the railing on one of the beds. So Dylan's bed has a short railing almost all the way around it! Its almost like a big boy crib!! He could easily get over the rail, but he has not attempted it yet! He goes to bed like a champ and then waits for me in the morning to get him! I seriously think he is the greatest child ever! Besides, if he did decide to climb out of bed, the little munchkin could not open the door because he is too short!!

Well, that is about all of the exciting news that has been going on for the past few months! I am trying to get as many appointments out of the way before December so that I won't have to worry about them once Andrew gets here. Next up on the list are the hearing test, another eye pressure check in November and we need to set up a dentist appointment to check the growth of his teeth! So much to do and so little time!!

Thank you all for your continued prayers and support!! We love you!!