tag:blogger.com,1999:blog-84267929371141223882024-03-05T05:34:43.906-07:00Pray For Dylanerikpraskinshttp://www.blogger.com/profile/13968148583565448761noreply@blogger.comBlogger226125tag:blogger.com,1999:blog-8426792937114122388.post-77713156505398200322016-07-07T22:37:00.001-07:002016-07-07T22:37:45.133-07:00New Adventures and Updates on my new blog!! Hi friends!! Thank you so much for following along on Dylan's journey. His race has just begun and we have encountered many hurdles along the way! Please join us as we run this race together on my new blog. <br />
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<a href="http://www.michellepraskins.com/blog">www.michellepraskins.com/blog</a><br />
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We cannot wait to see you there!!!<br />
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<br />Michellehttp://www.blogger.com/profile/10829093845903763541noreply@blogger.com0tag:blogger.com,1999:blog-8426792937114122388.post-53233385214515966152015-07-11T21:40:00.000-07:002015-07-11T21:40:30.017-07:00Good News & Bad News <span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 12.8000001907349px;">Good evening!! I am running on 2 hours of sleep in the last 24 hours, so I hope this all makes sense :) </span><br />
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<span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 12.8000001907349px;">Yesterday morning, Dylan woke up limping on his foot. I thought it was strange, but figured he would be ok. When he woke up from nap, he was still limping and that is when I started to pay attention a little more. I also noticed that Dylan lost his grip a few times that night on his right side. My sister Mandy discussed the symptoms with the docs in her ER and they said that we should go in. So off we went.....to my favorite place in the whole world! After getting a clear CT, the neurologist wanted to keep us overnight to get an EEG and an MRI. The EEG showed that Dylan had a lot of abnormal activity on both sides of his brain also indicating seizure activity. We knew about the seizure activity, but we did not know exactly what was causing it....until we got the MRI results. </span><br />
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<span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 12.8000001907349px;">So </span><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 12.8000001907349px;">there is good news and bad news. The good news is that there isn't any new damage to his brain. The bad news is that there is old damage in his brain caused either during birth or from treatments, most likely treatments. That scar tissue is what is causing the irregularities in his brain that are causing seizures. There is no reversing the damage that has been done. The only thing we can do is try to prevent the seizures from occurring. We started him on his med</span><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 12.8000001907349px;"> and that should hopefully keep the seizures at bay. His leg injury was also most likely an old nerve injury that was made worse by a seizure. The doc wants him to do physical therapy and maybe wear a brace to help with the problem but it will most likely never heal all the way. So all of this is not really new information, but it validates what we knew all along. Now his MRI validates it. It also takes away any hope that he will get better.... which is hard to deal with. We know that God is sovereign over every detail and He has made Dylan in His image and likeness. Dylan is exactly how He wants him to be. We are so thankful there are no tumors or life threatening issues.... Just a little bump in the process. Tomorrow we starts a new adventure with seizure medicine. The meds can have side effects such as moodiness, irritability, aggressive behavior, and sleepiness. We will go in every 2-3 months to test his blood and see if his dose needs to be changed. We are praising God for protecting Dylan from other cancers and tumors. Please pray for us as this is a lot of news to take in....to process. On one hand we are thankful and relieved, and on the other hand, we are disheartened that Dylan's brain is damaged. </span><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 12.8000001907349px;"> We are unsure of what the future holds for Dylan, but we know that the Lord has big plans for him. We are asking for His guidance on how to help Dylan be the best he can be while allowing him to be himself. He is such a huge blessing to us and we have some much to be thankful for. </span><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 12.8000001907349px;"> </span><br />
<span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 12.8000001907349px;">Thank you for continuing this journey with us!! </span><br />
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<span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 12.8000001907349px;"><br /></span>Michellehttp://www.blogger.com/profile/10829093845903763541noreply@blogger.com2tag:blogger.com,1999:blog-8426792937114122388.post-29657652507837388802015-06-24T21:18:00.000-07:002015-06-24T21:18:13.401-07:00One more week! <div class="separator" style="clear: both; text-align: center;">
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Hi guys!! This past week has flown by! We have had many visitors and have really been soaking up our last days here in paradise. We are dropping off Mema at the airport in the morning and picking up daddy! We are so thankful daddy can join us for our remaining days here. We plan on seeing the fireworks on the beach over the 4th of July weekend and then pack up and head home on the 6th. I really have mixed feelings about going home. On one hand, I am really excited to be home and get back to normal life....but life is also starting to feel normal here too. We are definitely NOT looking forward to going to 115 degree weather...it is going to be hard to get used to that after living in the gorgeous weather here. We really don't want to leave our new friends from the clinic either. They have been our constant encouragers every day and have cheered us on with Dylan's growth and change....we will surely miss them all! We are planning on coming back every 2-3 months to get a follow up EEG to check on Dylan's progress. </div>
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This week we had a little scare. More like I freaked out. When we were home a couple of weeks ago, Dylan had fallen and hit his face on a stool. Well that bruise is still not healed and actually looks almost the same as when he got it. It has not gone through the normal bruise healing stages. I had not really noticed it or paid any attention to it, but when my mom saw him, she thought it was strange. We showed a pediatrician and they said it was not normal either. NOW ENTER MOMMY FREAK OUT MODE. Sometimes being a parent is the most stressful thing ever...and being a parent of a cancer child is enough to give you a heart attack at any sight of anything abnormal. I called Dylan's oncologist and explained the situation to him. He did not seem to freak out which made me feel a little better...but the only thing that would put my mind completely at rest would be a blood test. I asked Dr. G for an order for a CBC....30 minutes later we were in the lab getting his blood drawn. We got a call this morning that his blood results came back 100% perfect! PRAISE GOD!! It's amazing how one second I can be getting frustrated with Dylan for being a nut ball and not listening and the next, I am praying with all my heart that nothing is wrong with him. I am thankful that God gave me that little reality check....it made me step back and look at life and what it would be like without Dylan. I cannot begin to describe the horrific thoughts that went through my head. I take him for granted. I take his health for granted. I take everything for granted. We are not guaranteed any amount of time here on earth, and we really need to make the most of every moment. I hugged my boys a little tighter today, I spent extra time admiring my amazing mother and the time I get to spend with her, and I thanked the Lord for all of the incredible blessings he has given me. </div>
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Well, no more mushy gushy stuff....here are some photos from our day at the beach on Saturday! ENJOY! </div>
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<br />Michellehttp://www.blogger.com/profile/10829093845903763541noreply@blogger.com1tag:blogger.com,1999:blog-8426792937114122388.post-40527846265320322262015-06-08T19:23:00.002-07:002015-06-08T19:23:59.915-07:00Busy Busy Busy Hi guys! Things have been crazy around here. We were able to make it home for few days a couple of weeks ago and now we are heading back tomorrow for a few days. Dylan has a routine eye pressure check on Wednesday morning. He still has to go under anesthesia because he will not let the doctor anywhere near his eyes with the probe. I don't blame him, it would be hard for me to do too!! While he is under, the doc will also check his eyesight to see if we have to change his prescription. He has been in the same glasses for 18 months so it is likely that he will need new ones. During the last eye pressure check, the doctor notice a cataract forming in one of his eyes. Hopefully it has not progressed. The doc said that if it continues to get worse, they would most likely need to do surgery to fix it. He said that it may work out in Dylan's favor as he gets older because he could get new lenses implanted into his eyes and eliminate the need for glasses. Hopefully all of this is far down the road!<br />
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Wednesday evening we are headed to the capital building to film a video about cord blood donation. There is a group trying to get information about cord blood on the ballot and they want to use Dylan's story to help raise awareness. We are so thankful that the Lord has been able to use Dylan to reach so many people and to help others. <br />
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We are also headed home for a special event! Dylan has been chosen as the Leukemia & Lymphoma Society's Boy of the Year to help raise funds by the participants from the Man & Woman of the Year Competition. The final event is on Friday and we are excited to celebrate with everyone! Someone donated white tuxes for the boys! I cannot wait to see how cute they look in them! They will be sporting white tuxes with orange bow ties for Leukemia....I am pretty sure they will steal the show!! I am really hoping Dylan cooperates and wears his snazzy outfit...at least for a few minutes so I can get some photos. And, they are white....not sure how long they will STAY white!!<br />
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So what's been going on here in San Diego? We MOVED! We moved on June 1st to the cutest little bungalow guest house located in La Jolla. This house is a gift from God! It is a one bedroom, one bath little house located behind the main house. We are 6 blocks from the beach and about 40 minutes from clinic. We LOVE it here. There is a back patio where the boys can ride their bikes around and play and explore, and there is a nice big living area for us to spread out that has gorgeous natural light. This place makes me happy. The boys can be loud and rambunctious and we are not bothering neighbors to either side of us and below us. WE ARE BLESSED! And on top of it all, it cost a lot less than all of the other places that we could find for June. <br />
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The Plan: Dylan is continuing to progress with his treatments. It is truly amazing to see his brain soaking up more information and to see the little changes along the way. But we need to get back home. We need some structure and we need to be together as a family again. We have made a decision to move back home the weekend of July 4th! YAY!!!! The doctors are confident that Dylan will not regress and will progress with speech therapy and school. We are so excited to see what this next year holds for Dylan's growth. We are planning on coming back every 3 months to get follow up EEGs to track Dylan's progress. The clinic has graciously extended their offer for treatment and we are welcome to come back for a "refresher" any time. We could not be any more thankful for everything they have done. They all feel like family now, and we will definitely be sad to leave them. <br />
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Dylan is talking more and more every day. He is still pretty feisty and fights me on a lot of issues, but that is to be expected with his growth and I am ok with that. His drawings are continuing to change and new ones are being drawn every day. He REALLY loves singing now. Last month, he only liked one or two songs as his favorites, but now he LOVES THEM ALL. These boys are singing everywhere we go! They especially love singing "Jesus Loves Me"...and very loudly...in public. It's funny to see people's reactions. They are little evangelists! His other new favorite is "Monkey in the Tree"...or that is what he calls it. He gets soooooo into it and laughs hysterically and loves the end when the crocodile snaps the monkey out of the tree. If you see him, ask him to sing it. He will gladly oblige. That and "The Wheels on the Bus", complete with 5 verses. I love these kiddos!! There is definitely never a dull moment with them around. <br />
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Thank you for following along and for praying for our family! We love you all!!!<br />
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A few weeks ago we drove up to Santa Monica with my friend Nicole....here are a few of our photos from that weekend!! ENJOY!<br />
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<br />erikpraskinshttp://www.blogger.com/profile/13968148583565448761noreply@blogger.com0tag:blogger.com,1999:blog-8426792937114122388.post-33830061927468356082015-04-29T21:40:00.001-07:002015-04-29T21:40:10.084-07:004th EEG Results <div class="separator" style="clear: both; text-align: center;">
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<span class="s1">Hi Guys!! Dylan had an EEG last week and it was the smoothest one yet. He was completely calm and sat still well enough for them to get some great readings. We were able to go over the EEG results yesterday. Dylan’s left lobe in his brain is still producing a lot of epileptic activity. His most recent seizure was this past Saturday. The new plan is to raise the frequency that they are “blasting” at that specific part of his brain in hopes of knocking it out. They do not feel that he needs to get on medicine just yet. The good news is that despite the seizure activity, Dylan’s brain is still responding to well to the treatment. It is slow progress, but it is progress. All we need to do now is knock out the neurons that are pulling down the others. So, what does this mean for our timeline? We still have no idea! It’s so hard to tell what Dylan’s brain is going to do, but we are guessing that we may be here into the summer. We have the condo we are staying in currently until the end of May. Then, in June, we secured an adorable little guesthouse in La Jolla….for a great price! The owners are willing to do month to month for us and it is the most affordable place we have found yet. God is good….and ALWAYS provides (even when I forget that for an hour and go through a minor freak out session…I am thankful for his GRACE!)</span></div>
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<span class="s1">So what is going on with Dylan? He is still his goofy and quirky self, but different. He is more aware of his surroundings and more involved in all the decision making. He used to be a very go with the flow kind of kiddo, mostly because his brain was in a fog and he did not realize what was going on….well, now he is awake! He has an opinion about everything. EVERYTHING! It is really quite hilarious. He has become very vocal and it makes us so happy! His vocabulary is increasing and he is trying to get his point across more and more each day. He is still having trouble pronouncing his words, but the amount of words are increasing. Insert HAPPY DANCE here!! He has come so far in the past few weeks and it is exciting to see him grow and learn. Erik’s family was here this past weekend and they noticed a huge change in him right away. Sometimes I think we get used to the changes and get discouraged that he is not progressing, but he is. And his brain is trying to catch up. It is soooooo exciting!!!</span></div>
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<span class="s1"> One of my favorite milestones he has hit is singing. He has never sung anything or even cared about music. He is now dancing AND singing along to his favorite shows. He asks to sing in the car….meaning he wants their kid CD to play. We have also been singing more every night and each of the boys really enjoy this. Dylan’s favorite song is Row, Row, Row Your Boat. This was introduced by Jackie a month ago and he really enjoys it! It is so cute to listen to him try to sing it. And there is a secret second verse that is his favorite part. Everyone needs to know this verse. Here it goes….”Row, row, row your boat, gently down the stream, If you see an alligator, make sure that you scream!” And then you say AHHHHHH!!! That is his favorite part and he cracks up every time. We probably sing this song 10 times a day and it never gets old. Andrew’s favorites include Lord’s Army, Jesus Loves Me, Deep and Wide, and You are My Sunshine. It is such an amazing sound to hear the kiddos singing….I LOVE IT!! </span></div>
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<span class="s1">We are heading home this weekend because I am shooting a wedding on Friday and we have to bring Daddy back home. We will be returning on Monday without Daddy. Please pray for our family. It is very hard on everyone to be separated, but Daddy needs to work. It will be a big load on me being here by myself with the boys, but I know that the Lord provide me with the strength to do it and will keep us safe. Thank you for the continued love and support!! I will update again when we have more information to share. Have a great night!! </span></div>
Michellehttp://www.blogger.com/profile/10829093845903763541noreply@blogger.com1tag:blogger.com,1999:blog-8426792937114122388.post-41059184651307607102015-04-20T07:40:00.000-07:002015-04-20T07:40:01.881-07:00I Choose JOY<div class="p1">
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One year ago today was the day we met our baby girl and had to say goodbye to her. It was the hardest thing I have ever had to do…</div>
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<span class="s1">She was perfect. Although was was only 17 weeks old…she was perfectly formed. I spent hours staring at her little body. She fit in the palm of my hand. So tiny. I took my time to stare and her and I was in awe of the miracle that the Lord had created inside of me. </span></div>
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<span class="s1">We do not know why the Lord chose to take Joy home, but we know that we will see her again some day. I often get asked if we are having any more children…and I really do not know the answer. At this time, we are actively trying NOT to get pregnant…but as we all know, God is in control. I don’t know if it is the right time for us or if it ever will be. I struggle with having the desire for another child….I just want her. I want Joy. But I know that cannot happen. </span></div>
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<span class="s1">It hurts. The pain is still raw. I never really understood how devastating miscarriage was, but now I do. It’s a pain that cannot be described. To know that you have a life growing inside of you and getting excited to meet that little person, and loving them from the moment you find out about them….and then they are just gone. I’ve always wanted a girl. Badly. I love my boys so much, but there’s just something about the thought of having a little girl that makes my heart ache for one. I want Joy. Every time I see a little blonde girl, I wonder what Joy would have looked like. I picture the most beautiful little baby with bright blue eyes and little blonde ringlet curls. Seeing little girls makes my heart ache for her….when will that pain go away? She would be 7 months old today….</span></div>
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<span class="s1">As I think about the days leading up to the birth, I have to be thankful to the Lord for how He worked everything out. I did not talk too much about this at the time, but I think it is important to acknowledge how the Lord provides and takes care of every detail. He took such good care of me during a horribly heartbreaking time. And honestly, I do not want to forget the details, so I want to record that day while it is still fresh in my mind.</span></div>
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<span class="s1">We were at my 17 week ultrasound. We were supposed to find out the sex of the baby. We were so excited. As the doc was doing the ultrasound, he paused and focused on her perfect little hand….her beautiful little hand….and that is when I knew. She was not moving…just showing us her perfectly formed little hand. It was unreal. I did not want it to be true and prayed incessantly that there was some mistake or that the Lord would bring her heartbeat back as we were on our way to another facility to get a more detailed ultrasound. But she was gone. </span></div>
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<span class="s1">Next came the really hard part. I had a baby inside of me that was no longer alive and she needed to be born. The doc said that he could do a DNC but I would not be able to see her and I knew what that meant….I did not want to do that to her. My other option was to give birth to her. The doc would induce me and my body would go into labor. It could take many hours….HOURS of sitting there going through the motions but not getting to take home my baby. The thought of going through that frightened me to the core. I have never felt so helpless and afraid in my life. I did not want to go through this and I had no choice. So we prayed. We prayed that my body would go into labor on it’s own and I would not be stuck in the hospital inducing labor. That is exactly what the Lord gave us. I started labor in the middle of the night on Easter last year…and we barely got to the hospital in time. There was no physical pain, and there were no complications. I remember the nurse asking me if I knew the sex of the baby….at that time we still did not know. I told her to just not tell me she was a girl….and she was….for some reason that made everything even harder. </span></div>
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<span class="s1">We got to hold our baby girl. My baby girl. The baby girl I had dreamed about. I counted her little fingers and toes. I looked at every detail that God had created….she was beautiful. Perfect. We had talked about girl names but she needed an extra special name. Joy….Rejoicing. </span></div>
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<span class="s1"> Everyone at the hospital was so wonderful to us and very kind regarding our delicate situation. I think the hardest part was leaving the hospital without our baby girl. I watched as other mommies were wheeled out with their precious little babies and we left with empty arms. I have never cried so much in my life. </span></div>
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<span class="s1">After everything….I am so very thankful that the Lord blessed us with a girl. I will never forget Joy. I am so thankful that we did not know she was a girl before we found out about her. I am the type of person that would have had her room decorated and her entire closet full of adorable girly clothes within days of finding out the sex. I cannot imagine how much harder it would have been to go home to a room full of reminders….God is good and spared me from that. He also took her home early….I am thankful for that. I am thankful that He has healed the pain. It is still there, but not the same way it was before. I have comfort knowing that I will hold her again some day. I know that she is safe in His arms. If you know someone who has gone through a miscarriage or lost a child….hug them, and hug them often. It is a pain like no other and no parent should have to experience it. I am thankful that I did not come home from the hospital to an empty home….but to hugs and kisses from my crazy little boys….little ones who had no idea what was going on. Every day is a new day and I am greeted each morning to two little faces who cannot wait to see me. I have a husband who loves me. Friends and family who are always there for me. I have so much to be thankful for…I will always give thanks, even when it hurts. I choose Joy. </span></div>
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<span class="s1">Thank you to everyone who played a crucial part in our healing time. Every card, message, hug, visit and prayer helped us through that heartbreaking time...I am so incredibly thankful for a support system pours out love and support when we need it. God is good. All the time. </span></div>
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<span class="s1">We plan on going to the beach today and letting go of pink balloons to remember her…I want the boys to remember her too and one day they will understand….</span></div>
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<span class="s1">Sweet Baby Joy….I will see you again someday soon!</span></div>
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<span class="s1"> I will get to hold you and smell your sweet scent and </span></div>
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<span class="s1">to that day! </span>We love you so much! </div>
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<span class="s1">I will leave you with the lyrics from a beautiful song from </span></div>
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<span class="s1">“Olivianna” by JJ Heller </span></div>
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<span class="s1">Hearts broke... when your heart stopped beating</span></div>
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<span class="s1">I don't... know if mine will ever stop bleeding</span></div>
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<span class="s1">Eleven minutes to breathe you in</span></div>
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<span class="s1">I felt the darkness</span></div>
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<span class="s1">When I knew I couldn't hold you again</span></div>
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<span class="s1">When I knew I couldn't hold you again</span></div>
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<span class="s1">Olivianna, you're in the arms of God</span></div>
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<span class="s1">Just a moment there is better than here</span></div>
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<span class="s1">Life is... short, but it is wide</span></div>
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<span class="s1">I know it's true</span></div>
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<span class="s1">You've touched more souls</span></div>
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<span class="s1">Than most people ever do</span></div>
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<span class="s1">Olivianna, you're in the arms of God</span></div>
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<span class="s1">Just a moment there is better than here</span></div>
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<span class="s1">You could not stay with us</span></div>
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<span class="s1">We will come to you</span></div>
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<span class="s1">You could not stay with us, ooh</span></div>
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<span class="s1">You're going home, Love, where you belong</span></div>
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<span class="s1">Oh my baby girl, I'll see you soon</span></div>
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<span class="s1">Olivianna, you're in the arms of God</span></div>
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<span class="s1">Just a moment there is better than... </span></div>
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<span class="s1">Olivianna, you're in the arms of God</span></div>
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<span class="s1">Just a moment there is better than here</span></div>
Michellehttp://www.blogger.com/profile/10829093845903763541noreply@blogger.com4tag:blogger.com,1999:blog-8426792937114122388.post-61462453346909119382015-04-16T06:21:00.000-07:002015-04-16T06:21:51.187-07:00Happy Birthday Dylan!! Can you really be 6?!! {To my sweet baby Dylan....you will always be my baby. For as long as I can remember, I have always wanted to be a mommy. I waited a long time for you. I wanted a baby as soon as daddy and I got married, but he got me Lily instead. Then four years later, you came along. I still remember the day that I found out I was pregnant with you...daddy and I were sooooooo excited. You were a dream come true for me! I know that you have been through a lot in your short little life but God has big plans for you. You are such a strong little boy. You are tough. You are sweet. You have more spunk than any other kid I have ever met. You are you....and you are perfect. I cannot imagine this life without your contagious laugh or your quirky little personality greeting me every morning. Thank you for consistently teaching us and showing us how to enjoy the simple things in life and to not take this life for granted. We love you little man! Happy 6th Birthday!! } --Love Mommy<br />
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I still cannot believe my baby is 6!! How is this even possible? When I think over the last 6 years, I am just in awe of what the Lord has done in his little life. </div>
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And He is not finished yet. </div>
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Life with Dylan is a constant adventure and we are ready for whatever God has in store for our family. Thank you for joining us on this little roller coaster we call life! Here's to another year of laughter, fun, growing, and learning! </div>
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I wanted to do something fun for Dylan's 6 year photos. I wanted to do it around something he loves. Well, he loves chips and salsa....and that is not really the prettiest thing to photograph....so we went for the next best thing, ICE CREAM!! So here is a little shoot we did at an adorable ice cream shop called Sloans. ENJOY!<br />
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This last set is one of Dylan's favorite past times....watching DOOOOORS! If I could buy him an automatic door, I would! He LOVES it!!! </div>
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Michellehttp://www.blogger.com/profile/10829093845903763541noreply@blogger.com0tag:blogger.com,1999:blog-8426792937114122388.post-8715370896253970982015-04-09T21:12:00.000-07:002015-04-09T21:12:03.384-07:00Day 23....Are we really on our 5th week??? <div class="separator" style="clear: both; text-align: center;">
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Hi guys! Happy Easter! I hope everyone had a wonderful weekend with family and friends. We were able to go home for the weekend and it was sooooooo nice to be home! I have to give the boys a lot of credit for how flexible they have been....they have surely been more flexible than I have. Whenever we get in the car to go somewhere, they always ask where we are going. Now when we say "home", Andrew asks, "Which home?" Where is home anymore?? I am beginning to wonder too!! Last week we stayed at an extended stay hotel for 6 days....that was SUPER fun. Then home for 3 nights....oh it was glorious to sleep in my own bed!! Then we drove back on Monday and stayed at a Hyatt extended stay for 3 nights. That hotel was AWESOME!! We even got a great breakfast cooked for us every morning! If it were up to me, and we had endless amounts of money, I would stay there forever! And that brings us to today. Where is home now? Well, let me back up a bit. We found out on Sunday that the condo we had previously been staying in was not going to work out anymore....so that basically brought us back to square one....and homeless! We knew God would provide, and He did just that! We received a call late Monday night from an anonymous donor wanting to help us with part of our lodging! What a huge BLESSING!! Do you know how expensive rentals are in San Diego?? PRICEY!! With the donor and donations we have received for Dylan, we will be able to pay to live here until the end of May. After that, who knows? Actually, I do know who knows....and He has it covered!! We moved into our new place today and are excited to be staying in one place for a few weeks. It's in the perfect area close to where we need to be and will work for what we need...God is good!<br />
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Now on to Dylan. He had his third EEG on Monday. He did well with it and was cooperative for the most part. We were anxiously awaiting the results and were able to talk with the doctor today. The EEG did not show a significant improvement, at least not like the 2nd from the 1st. It showed that the back of Dylan's brain is catching up and is starting to be on the same wavelength as the frontal lobe which is a good thing. His neurons are still not firing off at the rate they need to be, but this can take time. I feel like I get so impatient and I want his brain to heal overnight, but I know that is not the case. It's a long process and could potentially be a very long process. Waiting is hard. But we know that we are where we need to be. Also, there is epileptic activity in his left lobe. It was there before, but harder to detect because his EEG was so messy. The doc was hoping it would go away, but there it is....staring us in the face. He has not had any seizure activity that we have seen since before we left back in March. On Sunday he had a small occurrence that resembled more of a panic attack, but it could have been a seizure. Basically there are neurons in his left lobe that fire off fast and then slow down significantly instead of being consistent. These can trigger seizures and slow the rest of the neurons in the brain. These neurons are working against everything we are trying to do with the therapy. So what do we do? Well, we could put him on meds to help with the activity but that too would slow down the progress of the therapy. The doctor is now targeting that area specifically with the MRT along with his frontal lobe in hope that it knocks out the "bad" neurons and gets them to fall in line with the others. We started this extra step today. We will know if it works by the results of next EEG which will be on the 20th. If it does not help the epileptic activity, then we will have to probably start Dylan on meds. The meds will significantly slow down the process of the therapy so we are really praying that these neurons get their head in the game! Will you pray with us? <br />
Thank you so much for each and every one of your prayers! Thank you for everyone who reached out to friends and family to look for a place for us to stay and thank you for every comment on facebook or email or text of encouragement. You guys are all such a blessing to us and we are so very thankful for you!!<br />
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I will leave you with a few photos of my monkeys....they hate photos. They really need to get over it though :)<br />
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Michellehttp://www.blogger.com/profile/10829093845903763541noreply@blogger.com1tag:blogger.com,1999:blog-8426792937114122388.post-23410814197490846532015-03-31T16:56:00.000-07:002015-03-31T16:56:02.316-07:00Day 16....week 4 of treatments Hi guys!! I cannot believe we are going on our 4th week of treatments. I did not have the EEG photo last week when I posted results, so here it is. The first baseline EEG is the one on top and the most recent one is on the bottom.<br />
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In the first EEG, you can see that most peak activity is on the 6 bar range. In the second EEG, done two weeks later, the activity has pushed past the 6 and is peaking on the 8 bar (it's hard to see the numbers on the chart) If you look at the circle diagrams on the right, you can also see where the brain activity is shifting. When we first met with the doctor, he said he wanted to see more color in the 2nd of the 3 brain images. The first EEG shows all blue in the second circle, but when you look at the most recent EEG diagram, you can see that there is a lot more color action in the 2nd circle!! This is AWESOME!! The doctor was very pleased with the progress in just two short weeks!! </div>
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Although we are having fun over here in the amazing California weather, we are also missing our family and friends! We have decided to drive home for Easter!! We are all so excited! What better time to come home and be with family and friends?! Erik is flying back early on Wednesday to take care of some business stuff and then I will be driving home with the kids on Friday after therapy in the morning. Please, PRAY FOR ME! I have done it once before but it is definitely not on my favorites list of things to do with my munchkins! I am thankful we are able to leave early because I tend to get sleepy while driving. I will be making a lot of phone calls and cranking the music!! We have to keep the trip short and drive back on Monday morning. Dylan's follow up EEG is on Monday. We were thankful that they could schedule it late in the day and that we will not be missing any treatments. </div>
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Progress Update: We have not noticed too much over the past week. Dylan is definitely more vocal about his needs and wants and pushes the envelope on what he is and is not allowed to do. He has become a kissing monster. Not sure where this has come from, but it is a welcomed new habit! He acts as though he has adopted the european culture of kissing on the cheeks upon greeting people! That, and smelling hair! Every woman he greets, he sniffs their hair, multiple times. And then sometimes, if you're lucky (or NOT lucky) he will stick his finger in your ear. Dylan is strange. There is no denying his goofiness! But the kissing thing is hilarious and I love it! It makes me feel so special and loved when he kisses me multiple times accentuating the "Muah" kissing sound! SO CUTE!! That is, until he he starts to kiss the door and the wall and whatever else is around. I told you....he is a funny little one!! </div>
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Well, I think that is all for now! I will have more to share later! There is always something to talk about when it comes to D! Have a great day!! </div>
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<br />Michellehttp://www.blogger.com/profile/10829093845903763541noreply@blogger.com1tag:blogger.com,1999:blog-8426792937114122388.post-90106425218436212352015-03-26T21:07:00.000-07:002015-03-26T21:10:52.303-07:00DAY 13....EEG RESULTS!!! <div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgar5-Hf_EnVzgffpNL3-Lm7ejgxupnRurNwjwXrEOtDEM_CiUh_9xhZ_5CsO7LEQl6BRmvuMsVsfLKSeMyygnbcfbKzaVfZvltGg8R4ET9BgJUGtudw4zHR7GSOXHe7ql6ojxbhp-BXwg/s1600/Dylan+collage+.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgar5-Hf_EnVzgffpNL3-Lm7ejgxupnRurNwjwXrEOtDEM_CiUh_9xhZ_5CsO7LEQl6BRmvuMsVsfLKSeMyygnbcfbKzaVfZvltGg8R4ET9BgJUGtudw4zHR7GSOXHe7ql6ojxbhp-BXwg/s1600/Dylan+collage+.jpg" height="210" width="400" /></a></div>
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Well, today was the BIG day! We sat down with Dr. Alex not knowing exactly what to expect. He asked us a bunch of questions regarding Dylan's behavior and things we have been noticing. One thing that I have not written about is his drawing. He has a magnadoodle that he uses quite frequently and I have noticed that his drawings have been changing a lot! He would normally just draw uneven circles and squiggly lines. Then he started to draw more oval shapes and have lots of "legs" sticking out of them. He LOVES drawing and coloring. Then yesterday, I drew a picture of a stick person and then he traced over it. I told him to draw one next to mine. I had to prompt him as to what to draw, but he did all of the drawing himself. I tried this about a month ago and he did not understand it at all! This time, he did it! I was so excited! When I told the doc about the drawings and everything else we have seen, he sat back in his chair with a huge smile on his face. And that is when I knew....it is not random, it is not in my head....Dylan is changing!!! His brain is changing!!! The therapy is WORKING! PRAISE GOD!!!!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9xQLR8UgAZnjld2Bk_K3xGh6GcQaUcIUHGD__wIxR3dHPJsl8rmFV7geKe2Fz2cgxfNii8IrosIhRU3VzoOqjMalgZ2GoHP_sDDdvKLD8jFUTqEBA5vjf31TBiOtfYNHq4RFKdKC_XRo/s1600/IMG_0609.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9xQLR8UgAZnjld2Bk_K3xGh6GcQaUcIUHGD__wIxR3dHPJsl8rmFV7geKe2Fz2cgxfNii8IrosIhRU3VzoOqjMalgZ2GoHP_sDDdvKLD8jFUTqEBA5vjf31TBiOtfYNHq4RFKdKC_XRo/s1600/IMG_0609.JPG" height="240" width="320" /></a>March 12th</div>
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Dr. Alex went on to show us his EEG. He said he was really impressed with the results. Dylan's first EEG showed that Dylan's nuerons were firing off in the "6" range and our goal is to push those peaks to "8". According to this last EEG, many parts of Dylan's brain are now pushing the peaks into the "8" range. It was amazing to see!! Unfortunately, I did not get his EEG emailed to me today so I will post it when I get it. It was incredible to see the change! Dr. Alex was so excited and thinks that this therapy can really help Dylan. He said that he does not know the extent of what Dylan's brain will do or how much it will help, but we will continue with the therapy until he plateaus for 2 EEGs. He said that there is always a plateau, but everyone is different on how long it takes to get there. So, what does that mean for us? That means that San Diego will be our home for at least another month, but most likely longer. We are ready to do whatever we need to do to get Dylan the help he needs to better understand his world! This is so exciting!<br />
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Dr. Alex explained Dylan's state of mind to us in a unique way. He said that Dylan is in a dream like state of mind. His brain is foggy and now he is waking up. He described it as us waking up in the morning....still groggy and not fully aware of everything, but still awake. Dylan is now going to be processing everything differently, and he will be more aware of things going on around him. He said to expect Dylan to catch up with behavioral problems too. Like the terrible 2's. This is something we have been seeing a lot of for the past few days. Dylan is usually a very easy and go with the flow kid. Not now. He has an opinion about everything!! And while it is frustrating and challenging, it is INCREDIBLE to see him fight us on things. Please pray for us as we re-learn how to parent him. I feel that parenting is the hardest thing on the planet to do and we are constantly learning and changing how we do things from trial and error....and this will be no exception. <br />
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So, here we are. We are living in paradise and trying to soak it all in. The boys are enjoying the beach life as much as we are and we feel completely blessed to be on this little adventure. Although we miss our home and friends, family, and church....this has been a good growing time for us. I am the type of person that typically has everything planned out a week or two in advance and I can't plan anything at this time. I am realizing now how important it is for me to soak in life with my family and not have to have something planned every second of the day. Baby steps :) Growing hurts sometimes, but then God still blesses us in the end....how amazing is His GRACE?!<br />
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I cannot wait to see what God has in store for Dylan and our family! Thank you for joining us on our journey!!!<br />
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<br />Michellehttp://www.blogger.com/profile/10829093845903763541noreply@blogger.com2tag:blogger.com,1999:blog-8426792937114122388.post-46641177941374703652015-03-23T21:51:00.000-07:002015-03-23T21:53:07.048-07:00Day 10....EEG<div class="p1">
<span class="s1">Today was Dylan’s second time getting an EEG. We have been looking forward to this and dreading it at the same time! Dylan’s last EEG did not go over well and we were expecting a similar experience this time. What we got was a nice surprise! Dylan actually did amazingly well. Jackie (a speech therapist volunteering with the clinic whom we LOVE!) started the morning by distracting Dylan and playing with him. While she was distracting him, the other Jackie (whom we also LOVE!) was able to put the belt around his chest without him even noticing. Dylan has gotten to know these two lovely ladies over the past two weeks and is really comfortable around them. The next step was to put the cap on. I thought for sure that this was going to be when the freak out session began…but it did not. In fact, he was actually smiling while she put the cap on!!! Who is this child?! This can only be explained by all of your prayers, because this was not typical Dylan behavior. Thank you for your prayers!! Check out the video to see how calm he was when they were putting on the cap! It was so shocking to all of us!! </span></div>
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<span class="s1">Now that we had the cap on, we had to keep him still. He was not the biggest fan of daddy holding him still, but he did not fight nearly as much as last time. Erik had to hold him really still and hold his eyes closed for at least 20-30 seconds at a time. That is about the max we could get out of Dylan before he started to really squirm. Jackie thinks that she was able to get some pretty good reading to get to the doctor. We are really anxious to hear about the results of this EEG. The results should be able to tell us whether or not the therapy is working and give us an idea of what is going on is his little head. We have an appointment to go over the EEG with the doctor on Thursday. Right now, Thursday feels like weeks away! I just want to know now!! LOL! Oh the lessons that the Lord has been teaching me through this whole process…..it has been so hard at times, but good for me :) </span></div>
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<span class="s1">We did our regular MRT session after the EEG and Dylan is finally getting to the point where he does not fight it and just goes with the flow. I am glad it only took two weeks to get into the swing of things. Andrew really enjoys going and playing with Jackie while the other Jackie is working with Dylan. He loves the Jackies! We all do. We feel completely blessed to have such a great team working with Dylan. We had no idea what to expect or who we would be working with, but we have been blown away by the amazing people who work on the team. Every person in the office has treated us so kindly and all of them are in love with Dylan. We feel comfortable when walking through the doors and they welcome our crazy kids with open arms. BLESSED. There have been so many details that have come together for all of this to happen and that can only be described as “A GOD THING”…to God be the glory for everything that has happened and everything that is going to be! </span></div>
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<span class="s1">We had such a fun weekend! We met with friends on Thursday for dinner and some night time fun at the beach. Then we visited Erik’s uncle in LA on Saturday and enjoyed a nice drive up the Pacific Coast Freeway and seeing all the beaches. Then on Sunday, more friends came into town and we spent the day with them at the beach! I LOVE SPRING BREAK! Can we just make spring break last longer so more friends can come?! We headed back to Sea World today with those friends and were able to ride some of the rides because we had more adults to split up with the kids. Andrew is about an inch too short to ride all of the bigger rides and was completely bummed. Although, I am pretty sure he would have been terrified the entire time on the ride if he was able to go. So Dylan, Andrew and I stayed behind and watched everyone else get wet on the ride :) It is nice having the season passes, but I think Erik is done with Sea World. BUT IT IS FREE! We have to go a few more times! Maybe I will give him a week or two to forget about how much he loves it there!! </span></div>
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<span class="s1">Thank you for everyone following along with us and praying for our little miracle! We are excited to see what God has in store for us! </span></div>
Michellehttp://www.blogger.com/profile/10829093845903763541noreply@blogger.com0tag:blogger.com,1999:blog-8426792937114122388.post-81509443141633052702015-03-19T18:39:00.000-07:002015-03-19T18:39:20.929-07:00Day 8 & 9.....Progress <div class="p1">
<span class="s1">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. </span></div>
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<span class="s1">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 :) </span></div>
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<span class="s1">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! </span></div>
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<span class="s1">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!! </span></div>
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<span class="s1">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!</span></div>
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Michellehttp://www.blogger.com/profile/10829093845903763541noreply@blogger.com1tag:blogger.com,1999:blog-8426792937114122388.post-12202768684669279742015-03-17T21:06:00.001-07:002015-03-17T21:06:50.052-07:00Day 7....Chugging Along<div class="p1">
<span class="s1">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! </span></div>
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<span class="s1">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. </span></div>
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<span class="s1">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. </span></div>
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<span class="s1">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! </span></div>
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<span class="s1">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! </span></div>
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<span class="s1">I think that is all for now. I will leave you with some photos of today from our little outing :) ENJOY!! </span><br />
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Michellehttp://www.blogger.com/profile/10829093845903763541noreply@blogger.com0tag:blogger.com,1999:blog-8426792937114122388.post-31636087333582452212015-03-13T21:18:00.002-07:002015-03-13T21:18:27.143-07:00Day 5....Adjustment <div class="p1">
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<span class="s1">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 :) </span></div>
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<span class="s1">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 :) </span></div>
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<span class="s1">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. </span></div>
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<span class="s1">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! </span></div>
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<span class="s1">Thank you for checking in on us and following along on this new adventure!! </span></div>
Michellehttp://www.blogger.com/profile/10829093845903763541noreply@blogger.com1tag:blogger.com,1999:blog-8426792937114122388.post-8944710339280594892015-03-12T20:14:00.000-07:002015-03-12T20:14:00.772-07:00Day 4....EEG Review <div class="p1">
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<span class="s1">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! </span></div>
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<span class="s1">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. </span></div>
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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??? <span class="s1"></span></div>
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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. </div>
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<span class="s1">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?! </span></div>
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<span class="s1">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!! </span></div>
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Michellehttp://www.blogger.com/profile/10829093845903763541noreply@blogger.com0tag:blogger.com,1999:blog-8426792937114122388.post-21792720595307930662015-03-11T21:17:00.001-07:002015-03-11T21:17:26.368-07:00Day 3....Getting into a RoutineHi 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.<br />
So anyways.....I don't think he will ever stop liking doors :)<br />
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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!<br />
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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!<br />
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<br />Michellehttp://www.blogger.com/profile/10829093845903763541noreply@blogger.com0tag:blogger.com,1999:blog-8426792937114122388.post-79648245318928730652015-03-10T17:25:00.000-07:002015-03-10T17:25:19.194-07:00Day 2.....First day of MRT Hi guys!<br />
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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 :)<br />
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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. <br />
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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!<br />
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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.<br />
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Thanks again for all of your prayers!<br />
Michellehttp://www.blogger.com/profile/10829093845903763541noreply@blogger.com0tag:blogger.com,1999:blog-8426792937114122388.post-16355655201933655782015-03-09T22:29:00.000-07:002015-03-09T22:29:27.596-07:00Day 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!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgZtxEk3NpHn8IPQCcX2dB3WzIYLlN8IzPWMUbd15PY62dt1mC8NjKGR4VvMhnqfEtt-3k4G2NiV-cXl_uWHRO1HEcH-8i_fnzDGwCSkjTMkOP59gOei8JtqAtPrHl__984TMFBI5-m5GQ/s1600/DSCF0073.JPG" imageanchor="1" style="clear: left; display: inline !important; margin-bottom: 1em; margin-right: 1em; text-align: center;">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 :) </a><br />
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You can see in the photo where the suction cups were on his head.<br />
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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!<br />
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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!! </div>
Michellehttp://www.blogger.com/profile/10829093845903763541noreply@blogger.com0tag:blogger.com,1999:blog-8426792937114122388.post-5104826047897822112015-02-10T21:56:00.002-07:002015-02-11T00:39:27.727-07:00Exciting News! <div class="separator" style="clear: both; text-align: center;">
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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. <br />
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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. <br />
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<h1 style="background-color: #f6f6f6; color: #666666; font-family: Arial, Helvetica, sans-serif; font-size: 15px;">
How do you treat autism?</h1>
<span style="background-color: #f6f6f6; color: #333333; font-family: Arial, Helvetica, sans-serif; font-size: 14px;">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. </span><br />
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What are the potential effects of the treatment? What can I expect to see in myself or the family member receiving treatment?</h1>
<span style="background-color: #f6f6f6; color: #333333; font-family: Arial, Helvetica, sans-serif; font-size: 14px;">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.</span><br />
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<span style="background-color: #f6f6f6; color: #333333; font-family: Arial, Helvetica, sans-serif; font-size: 14px;">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.</span><br />
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<span style="background-color: #f6f6f6; color: #333333; font-family: Arial, Helvetica, sans-serif; font-size: 14px;">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. </span><br />
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<span style="background-color: #f6f6f6; color: #333333; font-family: Arial, Helvetica, sans-serif; font-size: 14px;">Every brain is different, and this must be taken into account when treatment is given. Response is variable. </span><br />
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<a href="http://braintreatmentcenter.asia/english/autism/FAQ.php#" style="color: #0061d0; text-decoration: none;">Back to Top <img alt="" border="0" src="http://braintreatmentcenter.asia/english/autism/arts/arrow_up.png" height="10" width="7" /></a></div>
<h1 style="background-color: #f6f6f6; color: #666666; font-family: Arial, Helvetica, sans-serif; font-size: 15px;">
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.</h1>
<span style="background-color: #f6f6f6; color: #333333; font-family: Arial, Helvetica, sans-serif; font-size: 14px;">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.</span><br />
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How many sessions do you usually do? How long is each session?</h1>
<span style="background-color: #f6f6f6; color: #333333; font-family: Arial, Helvetica, sans-serif; font-size: 14px;">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. </span><br />
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<span style="background-color: #f6f6f6; color: #333333; font-family: Arial, Helvetica, sans-serif; font-size: 14px;">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.</span><br />
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<span style="background-color: #f6f6f6; color: #333333; font-family: Arial, Helvetica, sans-serif; font-size: 14px;">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.</span><br />
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<span style="background-color: #f6f6f6; color: #333333; font-family: Arial, Helvetica, sans-serif; font-size: 14px;">This all adds up to 44 sessions of MRT℠ treatment, approx. 9 weeks. </span><br />
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<a href="http://braintreatmentcenter.asia/english/autism/FAQ.php#" style="color: #0061d0; text-decoration: none;">Back to Top <img alt="" border="0" src="http://braintreatmentcenter.asia/english/autism/arts/arrow_up.png" height="10" width="7" /></a></div>
<h1 style="background-color: #f6f6f6; color: #666666; font-family: Arial, Helvetica, sans-serif; font-size: 15px;">
Is the MRT℠ treatment procedure painful? What does it feel like?</h1>
<span style="background-color: #f6f6f6; color: #333333; font-family: Arial, Helvetica, sans-serif; font-size: 14px;">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. </span><br />
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<h1 style="background-color: #f6f6f6; color: #666666; font-family: Arial, Helvetica, sans-serif; font-size: 15px;">
How long does the treatment last?</h1>
<span style="background-color: #f6f6f6; color: #333333; font-family: Arial, Helvetica, sans-serif; font-size: 14px;">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. </span><br />
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<span style="background-color: #f6f6f6; color: #333333; font-family: Arial, Helvetica, sans-serif; font-size: 14px;">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. </span><br />
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<h1 style="background-color: #f6f6f6; color: #666666; font-family: Arial, Helvetica, sans-serif; font-size: 15px;">
What is the success rate?</h1>
<span style="background-color: #f6f6f6; color: #333333; font-family: Arial, Helvetica, sans-serif; font-size: 14px;">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.</span><br />
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<h1 style="background-color: #f6f6f6; color: #666666; font-family: Arial, Helvetica, sans-serif; font-size: 15px;">
What are the potential side effects of MRT℠ treatment? Is there any permanent risk to trying this treatment?</h1>
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MRT℠ treatment has mild side effects, if any.<br />
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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.<br />
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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.<br />
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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.<br />
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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.</div>
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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!!<br />
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Love, Michelle<br />
<br />Michellehttp://www.blogger.com/profile/10829093845903763541noreply@blogger.com1tag:blogger.com,1999:blog-8426792937114122388.post-44853584945088993502013-09-10T23:19:00.002-07:002013-09-10T23:19:49.840-07:004 years ago, and it seems as though it were yesterday.....<div class="separator" style="clear: both; text-align: center;">
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September is Childhood Cancer Awareness month. How appropriate that our little guy celebrates yet another year of health on September 11th.<br />
This is an excerpt from our prayfordylan.com blog on the big day. 09/11/2009<br />
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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. <br />
THE NEXT STEP: <br />
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!!<br />
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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! Michellehttp://www.blogger.com/profile/10829093845903763541noreply@blogger.com0tag:blogger.com,1999:blog-8426792937114122388.post-77837631748278783782013-07-16T23:05:00.000-07:002013-07-16T23:06:01.087-07:00A visit to the Neuro Psychologist.....<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjGHDdYSEuzCfAQaufS6-eoWv3xjJSHCOzoD2BzQ4vjc57FRi8REvSNtJbdtZ9DcfSs5VYLEVQJT8MYJcM00-gcBg0qJnvWUrEAAOIe2xNIwvYrpMkodsdalVr9mprbedpw_x_Tn4_M4SU/s1600/Dylan+collage+2.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="132" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjGHDdYSEuzCfAQaufS6-eoWv3xjJSHCOzoD2BzQ4vjc57FRi8REvSNtJbdtZ9DcfSs5VYLEVQJT8MYJcM00-gcBg0qJnvWUrEAAOIe2xNIwvYrpMkodsdalVr9mprbedpw_x_Tn4_M4SU/s400/Dylan+collage+2.png" width="400" /></a></div>
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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.....<br />
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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.<br />
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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.....<br />
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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. <br />
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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 <strong>Major Neurocognitive Disorder Due to Another Medical Condition, </strong>without behavioral disturbance. The white matter in his brain has been disrupted causing primary deficits in attention, persistence, and short-term memory/memory encoding. <br />
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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.<br />
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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. <br />
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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! Michellehttp://www.blogger.com/profile/10829093845903763541noreply@blogger.com0tag:blogger.com,1999:blog-8426792937114122388.post-81237358895476800242013-03-02T13:27:00.000-07:002013-03-02T13:27:27.694-07:00One year follow up with Dr. Graham<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjWSELELf016it0Hsc-hApoe70e6wlD0QUjJgRnZMZ56BBfBAXQmmCrPOPU0EO3KiqDTdWUUDbyJipxbnJnJW_mGGGvqC4lH7p9sq7lDsnSLaohlcVwNOF24hZz118c_AFq225yDciniJQ/s1600/collage+9.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="132" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjWSELELf016it0Hsc-hApoe70e6wlD0QUjJgRnZMZ56BBfBAXQmmCrPOPU0EO3KiqDTdWUUDbyJipxbnJnJW_mGGGvqC4lH7p9sq7lDsnSLaohlcVwNOF24hZz118c_AFq225yDciniJQ/s400/collage+9.png" width="400" /></a></div>
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! <br />
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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!</div>
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If it does not work, then we know that God will provide the funds to do the procedure under anesthesia. </div>
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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!! </div>
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The following picture is the last part of the visit and Dylan was DONE! He cracks me up :) </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEnyi3DMEmG34mz4f6TIBHpUb-kZM9xuzacs1rgGos_Zm8cUKasUcqTQt2nLgjP8l5WrmSLneYs9qzvOZLimj59jyQJ8AKZH52BmkhCbFI6bZkifV_DbHE2RBdJdFyhT3rHnkaF1CBUQ8/s1600/Collage+7.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="132" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEnyi3DMEmG34mz4f6TIBHpUb-kZM9xuzacs1rgGos_Zm8cUKasUcqTQt2nLgjP8l5WrmSLneYs9qzvOZLimj59jyQJ8AKZH52BmkhCbFI6bZkifV_DbHE2RBdJdFyhT3rHnkaF1CBUQ8/s400/Collage+7.png" width="400" /></a></div>
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FOR MORE UPDATES, Please visit our family blog at Praskinsfamily.blogspot.com</div>
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Michellehttp://www.blogger.com/profile/10829093845903763541noreply@blogger.com0tag:blogger.com,1999:blog-8426792937114122388.post-49765565449686748922012-12-04T22:11:00.000-07:002012-12-04T22:11:31.026-07:00Dylan's Cord Blood Video<a href="https://vimeo.com/41449761" target="_blank">https://vimeo.com/41449761</a> <br />
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We thank the Lord every day for our little miracle! Michellehttp://www.blogger.com/profile/10829093845903763541noreply@blogger.com0tag:blogger.com,1999:blog-8426792937114122388.post-15117253539424138942012-12-04T21:27:00.001-07:002012-12-04T21:27:54.201-07:002012 Christmas Newsletter <div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj29GV4m0-Cc_fP5i9Nc9LSvBV_alb7hqX4NuqaRP5a5cPvLdJO5Eg6lPMEmBvSnUvvFJsJKquCGPG9gH30G0Kfmezi9Xb36G0xBLzO3aPpoYxr3duTvEDwV6VwERv44wTQh-SdYZIV3x4/s1600/PBD_2770.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj29GV4m0-Cc_fP5i9Nc9LSvBV_alb7hqX4NuqaRP5a5cPvLdJO5Eg6lPMEmBvSnUvvFJsJKquCGPG9gH30G0Kfmezi9Xb36G0xBLzO3aPpoYxr3duTvEDwV6VwERv44wTQh-SdYZIV3x4/s320/PBD_2770.jpg" width="320" /></a></div>
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<span style="font-family: "ST Honeymoon";"><span style="font-size: large;"><span style="color: red;">What`s New<o:p></o:p></span></span></span></h1>
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<span style="font-family: Georgia, "Times New Roman", serif;">2012 has been a whirlwind of fun! Our little Andrew joined our family on December 29th last year.<span style="mso-spacerun: yes;"> </span>I cannot believe he is almost 1!!! He has been such an amazing addition to our crew.<span style="mso-spacerun: yes;"> </span>Dylan loves having a little brother. <span style="mso-spacerun: yes;"> </span>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<span style="mso-spacerun: yes;"> </span>and can fit into most of Dylan`s clothes.<span style="mso-spacerun: yes;"> </span>It will not be long before Andrew outgrows Dylan. <span style="mso-spacerun: yes;"> </span>They love to wrestle, and cannot wait to give each other hugs and kisses in the morning.<span style="mso-spacerun: yes;"> </span>We had to nickname Andrew, Bubba, so that Dylan could say his name.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>They can be best friends one minute, then tackling each other the next, over some silly toy...but nevertheless, they love each other!<span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: Georgia, "Times New Roman", serif;">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.<span style="mso-spacerun: yes;"> </span>God's hand was in every single detail of the process and we are blown away by the amazing home He has given us. <span style="mso-spacerun: yes;"> </span>Our<span style="mso-spacerun: yes;"> </span>tiled hallways are filled with laughter and screaming as the boys ride their cars and chase each other all over the place. <span style="mso-spacerun: yes;"> </span>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! </span><v:shape fillcolor="#feffcd" id="_x0000_s1027" strokecolor="#090" style="height: 50.35pt; margin-left: 62pt; margin-top: 63pt; mso-position-horizontal-relative: page; mso-position-vertical-relative: page; position: absolute; width: 486pt; z-index: 2;" type="#_x0000_t202"><span style="font-family: Georgia, "Times New Roman", serif;"><v:textbox style="mso-next-textbox: #_x0000_s1027;"><w:wrap anchorx="page" anchory="page"></w:wrap></v:textbox></span></v:shape><span style="mso-ignore: vglayout; position: absolute; z-index: 2;"><span style="font-family: Georgia, "Times New Roman", serif;"></span></span></div>
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<span style="font-family: Georgia, "Times New Roman", serif;">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.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>Although staying home with the boys can be challenging some days, it is the greatest job I could ever ask for! <span style="mso-spacerun: yes;"> </span>Hopefully this year, I will make some time to update our blog with pictures and a glimpse into our crazy life!</span><br />
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<span style="font-family: "Palatino Linotype";"><span style="font-family: Georgia, "Times New Roman", serif;">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.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>We could not imagine life without his laughter and silly personality.<span style="mso-spacerun: yes;"> </span>He is a joy to have around and is a constant reminder of God's faithfulness! </span></span></div>
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<span style="font-family: Georgia, "Times New Roman", serif;"></span><br />Michellehttp://www.blogger.com/profile/10829093845903763541noreply@blogger.com0tag:blogger.com,1999:blog-8426792937114122388.post-54610859208815917852012-06-14T21:53:00.000-07:002012-06-14T21:53:44.505-07:00Come 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! <br />
<a href="http://www.praskinsfamily.blogspot.com/">www.praskinsfamily.blogspot.com</a><br />Michellehttp://www.blogger.com/profile/10829093845903763541noreply@blogger.com0