Thursday, November 25, 2010

Happy Thanksgiving!

Waking up very early this morning I stared out the window watching how beautiful the sun slowly brought light on to the Colorado mountains. The glimpse of beautiful snow top mountains and pillow soft clouds gave me a feeling of peace and happiness. Just then I remembered seeing the sign "God's Country" which really put everything  into perspective. Though every year we have celebrated the Holidays with Family and Friends this year is starting off very different. Different in that as parents we truly understand  and appreciate the meaning of being Thankful.
As I walked around the house waiting anxiously and knowing everyone was still sound asleep, I came to see that I could not take my eyes of my kids cuddled up next to their mommy. DJ had his Super DJ Blanket and his sisters Tiana & Kiara on each side of him. At that moment I was thankful knowing that our children were always going to be there for each other. I started to remember when I was younger and my 5 brothers would stay up all night watching movies and wake up to the smell of Turkey, Ham and Fresh Pumpkin Pie as  our mom cooked a Feast for all of us! Those were some of the Greatest memories I want my children to have someday when they look back on there childhood. I then looked over to Kristen and found myself thanking God for bringing her into my life. This beautiful woman, wife, mother and best friend has helped me be a better man and I hope she knows how much I truly love her.
DJ is doing better everyday. At his last therapy his therapist said this was the best session he has had yet. His right side is really coming along. We have been working with him on stairs and he is walking up without assistance now. His speech is improving and is starting to put words together. How hard it must be for him knowing what he wants to say, but can't quite put all the words together yet. We keep hugging him and let him know that he is getting stronger and stronger every day. We have a lot of videos that are to help him regain his speech and practice with him every day. It's wonderful to hear him getting his words back. The other day the girls and him were coming down the stairs and he clearly said "Wait for me". We know it's going to take time and with a lot of love and support he will get every thing back. He has come along way in 11 weeks and the Doctors at his last visit were very excited and hopeful about his progress.
Kristen has recently been in contact with the parents of Jessie Hall who is a beautiful little girl that had a hemispherectomy and touched the heart of many as she continues on her journey. Her parents Cris and Kristi started The Hemispherectomy Foundation to help other kids and family's all around the world. Jessie's Grandparents who live in Wyoming, only a few hours from us, have dedicated acres of their land with Christmas trees that they are lighting for all the children that have had hemispherectomy's. Jessie and her parent's will be visiting during holidays and we are hoping to drive to Wyoming to meet this wonderful family that has done so much for so many.
Our family has a lot to be thankful for this year and are blessed to have all the Love & Support from Great Family & Friends. We will never be able to express just how much you helped us through our tough times and are Grateful for everything. You will always be in our prayers.
  We have many chapters of life that we go through, some good, some bad. Some families stay very close and some seem to slowly drift apart. It doesn't mean we stopped loving each other, it just means we are all growing and adapting to our lives that may take us down different roads. In the end the most important thing to remember is that we are all still family and that is something very special. HAPPY THANKSGIVING EVERYONE!! Have a safe and wonderful day with your families.
-From the Rivera Family.

"Once you choose hope any thing is possible" -Christoper Reeve

Sunday, November 7, 2010

Family & Friends are always the best medicine

   It has been close to 4 weeks that we all have been home now and it is very nice to have a sense of normality back in our lives. DJ has come a long way since his surgery 8 1/2 weeks ago and we know still has a long journey ahead of him. We really have to thank God for all the continued support from family & friends we have been receiving. These prayers & love have really been the strength which has motivated DJ and kept him smiling as he reaches new milestones in his recovery.
   This past weekend was Halloween and DJ along with family and neighborhood friends had a wonderful time. DJ wore his Superman outfit, Kiara went as Supergirl, and Tiana went as a Pirate. It was very nice to see DJ  back with all his wonderful neighborhood friends. House by house DJ seemed to be getting more and more excited as he visited some of the neighbors who had not seen him since he has been home. All the interaction with everyone was such a great medicine for DJ. He stopped and took pictures with his best pals and gave hugs to show them how much he was glad to see them. Our friends Tara and Theo (who live right next door) had a Halloween party with games and prizes for the kids.We all really had a great time enjoying each others company.
   DJ also made a visit to school to attend his class Halloween party. All the kids were dressed up and even his teacher had dressed up as Where's Waldo. We are very thankful that DJ is part of such a great school as Turnberry Elementary. The students and staff have been absolutely wonderful. Dino and I took all the kids to family night where the kids played games, trick or treated, and had lots of fun! DJ's energy is definitely  coming back because even though we were ready to go he still wanted to stay and play.
   One of DJ's highlights was receiving a special gift from our cousin Ramiro in AZ. Ramiro made him a Superman pajama outfit with a cape and all! He was very excited to see it and even though it was 2 o'clock in the afternoon wanted to put it on for the remaining of the day & night. Thank you very much cousin for the outfit and the beautiful heart felt words you sent in your letter.
DJ is walking without assistants but is working hard on his strength & balance. We are taking him to outpatient therapy during the week. He has started walking up the stairs all by himself! His therapist have really seen a difference from session to session. Though sometimes getting him to therapy has its challenges. I think he would prefer watching the Disney channel and lounging on the couch. Wait...I guess I see his point. He is now able to slowly raise his right arm and just a few days ago started to squeeze with his right hand. Dino and I are working everyday with him doing different activities to help wake up his muscles and help his brain to start making more connections with the right side of his body. Sometimes it's very hard as a parent seeing your child struggle with things that use to be so easy for him, but that feeling quickly vanishes when we see his beautiful eyes light up from accomplishing another goal. Letting us know to stay strong because he has not and never will give up on his journey.  He has made our family bond closer and continues to every day. We seem to appreciate each other much more and he helps to remind us that love can move mountains.  

"Once you choose hope, anything is possible" -Christopher Reeve

Thursday, October 21, 2010

Home is where the heart is.

    DJ is very happy to be home with his family and friends. All his neighborhood pals have been coming to visit and spend time with him. It's amazing how children build these beautiful bonds. Being around his friends has definitely been a major motivating factor for him to continue with his progress. He has been taking walks with his dad enjoying the beautiful Colorado weather which will be turning in the next couple of weeks. DJ is very determined and continues to show daily improvement as he faces these challenges. The strength in the right side of his body is starting to improve more so in his right leg as the doctors predicted. His right arm has started to get what they call tone. Which is the beginning of movement and is a very good sign.
     There has been a lot going on since we have been home. On Saturday Oct.16th our friends from the neighborhood planned a Spaghetti Dinner Benefit at the Fire Station for DJ here in Colorado. Everyone had a great time as some of his friends were seeing him for the first time since his surgery! The kids had so much fun doing the cake walk, getting their face painted, dancing, and of course getting to check out the fire engine. The kids had a great time sitting in the truck and imagining that they were brave junior firefighters. Mullberries Cake Shop made an awesome cake with the Super DJ logo on it. He had the honor of cutting the cake and having the first slice! He was absolutely thrilled! Mullberries also provided cupcakes with DJ's initials on them that were very tasty! He was so excited that he walked and played with his friends during most of the event! By the end of the fun filled night he was ready to go home and relax! To all of our wonderful family and friends that helped with not only this event but have given us all the love and support through out, thank you from the bottom of our hearts! We are so blessed to have you in our lives! THANK YOU SO MUCH!!!
      DJ has started his outpatient therapy. It's good for us too because they work with Dino and I on what we can do to help him at home. The physical therapist thinks DJ is doing a great job and probably can go down to one physical therapy sessions a week after about a month or so. We are so proud that he is fighting to get his strength & mobility back. Our little man seems to amaze us each day!
    We appreciate every one sending us love and prayers and will try to update the blog. at least every couple of weeks so that family & friends can follow along with Dj's Journey.Thank you and God Bless.

"Once you choose hope, anything's possible" -Christopher Reeve

Saturday, October 9, 2010

Love and prayers will find the way.

    We are so proud of the progress DJ has been making and the strength he is showing to regain what he had lost. Every day he seems to be doing something he hasn't been able to do since his operation. This past week after DJ's afternoon therapy Kara (his therapist) had him walk back to his room instead of putting him in his wheelchair. When I opened the door for him I realized Kara wasn't helping support him as much as usual. I sat down so he could walk (with Kara only holding the waist of his shorts) all the way across his room to me! What a special moment for me as a mother!  His balance and strength is improving more and more each day. Just a few days later he gave us a wonderful gift by walking 65 steps unassisted down the hospital hallway, what a beautiful site. Now when the therapist come to get DJ he doesn't have to use his wheel chair anymore, yay!!! He is working so hard! Dino let DJ know that it was Grandma's Birthday on the 5th so they called her to say Happy Birthday.  He then amazed us by singing the entire Happy Birthday song to her. Our little man brought so many happy tears to all of us! God is wonderful!!!
    It has been a month since DJ's operation and the doctors are looking at Oct. 14th being the date we get to go home....I guess you don't really know how much that word truly means to you til you spend a long period of time away. As I walk through the hallway my heart goes out to all the parents and children that have been here for such a long time. Some of them have traveled from different states to give their children the best care here at the Children's Hospital. We are so proud of Tiana because every time she visits she wants to go down to the Chapel to pray for DJ and all the other children here at the hospital. As Tiana prays I find myself thanking God for giving DJ three wonderful sisters who I know will be close to him and watch out for him for the rest of their lives.
    DJ had another special day on Thursday when the Aurora Fire and Police Departments set up a pumpkin patch in the front of the hospital for the children and spent time with the kids. Since the event was outside we had to take DJ down in his wheelchair. That didn't last very long as he tugged at Daddy to let him know he wanted to walk through the pumpkin patch to pick that special pumpkin. After observing many different shapes and sizes he picked the cutest little one that everyone else seem to be passing up! DJ was also made a Junior Police Officer & Fireman with badges to top it off. These men and woman are wonderful for doing that for the children who otherwise might not be able to pick out a pumpkin!!
    On Oct. 1st our family and friends in Arizona came together for a Benefit Dinner/Dance for DJ that was absolutely wonderful. Dino and I wished that we could have been there and are so thankful for having such great family and friends. Toby & Julian (our cousins) thank you from the bottom of our hearts for putting so much effort in doing all this for our family. We can not put into words how much this means to us. We love you guys! Please let every one who took part in it know just how grateful we are!
We have come to realize when times are hard and we don't know how to make it through we just look to God to guide us. God has been looking out for our family along the way and showed us by giving us such wonderful family and friends to be there with us through it all. God is Great!


"Once you choose hope, anything's possible" -Christopher Reeve




    
   


Wednesday, September 29, 2010

One day at a Time

   Today was a wonderful day! Last week DJ was fitted for a brace on his right leg to help him strengthen it. Today they brought it in to try it on and noticed that the doctors put pictures of superman all over his brace which really had DJ in a good mood. When DJ returned from therapy we usually see him being brought back in his wheel chair, this time he was walking through the door with Char (his therapist) giving him assistance. Our little man is working hard every day to get back to where he was in life before this sickness so unexpectedly disrupted it. After meeting with the nutritionist yesterday she informed us that we no longer had to keep a daily recording of all the calories he was eating due to the fact he was doing great and no longer needed to be monitored. Yay!!! Speech therapy is also going very well DJ is starting to put words together and music has been a key element that has helped tremendously.
    It is really wonderful to see our little man show his playful personality more and more each day. Visits from family and friends, along with cards that have been coming in, have been such a great motivator for DJ as we read to him and show him that he has so many wonderful people supporting him. This past Saturday our amazing family and friends came together to do a benefit car-wash\bake sale. Through Facebook we were able to show DJ pictures of all his hero's wearing Super DJ T-shirts and working hard but having fun washing cars and selling baked goods. Aimee and Tina thank you so much for putting this together we love you! Please thank everyone that was a part of this from all of us, we truly appreciate this so much. Toby and Julian are also having a Dinner/Dance Benefit for DJ that will be this Fri. Oct. 1st. at Custom Farm Services in Stanfield off Highway 84. Food, Dancing & Fun starts at 6pm. Thank you guys so much for putting this all together we are very fortunate to have you all in our lives.  
God thank you for hearing our prayers and giving us hope and strength to go forward in getting our family back home together again soon as we take it one day at a time. God thank you for blessing us with such amazing family and friends that have sent their love, prayers, and support. 

"Once you choose hope anything is possible" -Christopher Reeve

Thursday, September 23, 2010

DJ making Great progress in Rehabilitation

    Yesterday the physical therapists brought DJ back to his room and knocked on the door letting Dino know they had a surprise for him. When Dino walked out into the hallway there was DJ smiling up at him sitting on a tricycle they use during sessions. This was the first time DJ had been introduced to this. This last week had been more of assisted walking and other strengthening techniques. DJ with help from Char & Amanda (his awesome therapists) was riding up and down the halls smiling at every doctor, nurse, and patient that he passed along the way! Tears of happiness started to flow from Dino's eyes as our little boy was brightening up the spirits of everyone in his path. Even though our little man is 5 and we had been through this experience before ,when he was 2, we were filled with emotions of happiness, excitement, and a sense of parent pride all over again. It's an amazing feeling that you want to hold onto forever and never let go.

    DJ had a little surprise himself as a special little visitor came to see him. Payton is a friend from his kindergarten class at Turnberry Elementary. His mother Aimee had contacted us here at the Children's Hospital letting us know that Payton had been talking about DJ and wanted to visit him. It's wonderful how this little boy at 5yrs displayed compassion for another child that he had only known for a few days. His mother was very nice and when we started to talk seem like a old friend right from the beginning. Payton even surprised DJ with some Gifts that put a sparkle in his eyes. We can attest to knowing their are a lot of good people in this world and we have met a lot of the special ones!

    We are happy to report that DJ is no longer on his feeding tube and is eating solid foods. YAY! So Grandma Ann has been bringing in some fresh home made food. Delicious! (Thank you Mom and the wonderful staff at Turnberry Elementary...we love you). DJ is also starting to realize that no matter how much he fights he still has to see his therapist twice a day and there is no getting out of it lol. He is starting to warm up to all of them and comes back smiling after his sessions. That makes us so happy that they are starting to see the sweet little boy that we have loved since he was born.

We wanted to thank everyone who has been sending us love and support throughout and to new friends we are making along the way. God bless you and we love you guys.

"Once you choose hope, anything's possible." -Christopher Reeve

Sunday, September 19, 2010

September 19, 2010

DJ has been making great progress these last few days. He goes to speech, occupational, and physical therapy two times each day.  In PT he was able to stand and take a few steps (both with assistance). In speech therapy his is also starting to say a little more....especially "No" when he doesn't want to do what they ask him. He has been doing great with swallowing and begun eating soft foods but still has his feeding tube until he is able to eat enough calories each day. Friday the doctors removed the tube that has been in DJ's head since surgery which helped with the pressure. He no longer needs it and is another wonderful step to his speedy recovery. We are so happy that DJ is working hard and not giving up. The fight in him is stronger than ever.

DJ received some more cards and a stuffed  DINO-saur and a BATMAN build-a-bear from his friends at Daddy's Lowes. Yesterday our little man had a special visitor come back from Arizona to spend some time quality time with him. Grandma!!! His eyes lit up when he saw her and heard her voice. With Aunt Kim going back to Arizona this is perfect timing for a Grandma visit.

Today we took DJ out of his room for a short ride in his wheelchair for the first time. Now that he isn't hooked up to all the different tubes and iv's he is able to leave his room now. I think we will venture outside soon for a stroll. He needs a break from the Disney channel(even though Dino and I are watching it after he falls asleep.lol)

Thank you all for the continued love and prayers for our little man. We appreciate you taking the time to listen and follow along DJ's Journey.


"Once you choose hope, anything's possible." -Christopher Reeve

Monday, September 13, 2010

September 13, 2010

DJ had a great night last night compared to some previous ones. He was able to sleep all night long...except for a few times when the nurses had to reposition him but he went right back to sleep. He was sleeping when his Tata Art and sister Cianna left for the airport early this morning so they gave him a kiss while he was sleeping. You could tell by the smiles on his face he enjoyed having them both here with him this past week. Fortunately DJ's Aunt Kim flew in from Arizona this morning and when he saw her gave a great big smile and hug. To see him light up everyday when he has visitors is a blessing. Today he got an extra special surprise when he got handmade get well cards made by all the kids in his kindergarten class at Turnberry Elementary. 

Today DJ started physical therapy two times a day and will begin speech therapy soon. All DJ's therapist are wonderful and very caring...even though he is showing frustration with them here in the beginning. It is nice to see the fight in DJ as he shows the therapist his strong will. The therapist say he is definitely showing day to day improvement. Since DJ loves music so much we also want to look into music therapy for him which we have heard works wonders for children. 
DJ is now playing the XBOX with daddy...I guess even brain surgery couldn't stop him from playing that! Since DJ can't move his right arm or hand daddy does the the buttons on the right side of the controller and DJ controls the left side of it. Daddy is definitely getting better with DJ's help.

We have got get well cards and prayer grams in the mail and want to thank everyone for their continued love and support. We can not thank everyone enough for all the prayers!

"Once you choose hope, anything is possible" -Christopher Reeves

Saturday, September 11, 2010

Septmeber 11, 2010

It has been three days since surgery and DJ is doing well. The first couple days he did a lot of sleeping while in the Pediatric ICU. Today he was transferred to his recovery room and was awake and smiling quite a bit. The doctors say he is doing great. He has had physical therapy the last two days and today got a bit irritated with his therapist...it was a little funny considering DJ is usually the sweetest little guy. He isn't able to speak to us but seems to be understanding us and will squeeze our finger if the answer is yes. He has also moved is right leg and that is wonderful since it has only been a few days since surgery. He is still my loving little man...he gives me hugs all the time. He has picked up rolling his eyes when he isn't pleased with something though. Our little man has even tried to talk...he still has a ways to go with that though. We know everything will take time but we know he is going to do great! We will try to update more often. Thank you all for your prayers!

Wednesday, September 8, 2010

Surgery Day

Today is the day the day we leave our little man in the hands of God...and of course the doctors too. Since DJ is only 5 years old everything is superheros and villains and good guys and bad guys to him...so that's what we stick with trying to explain things to him. DJ is ready for all the "bad guys" (as he calls what is going on inside of him) to be gone. Once he is able to be seizure free he'll know the good guys have won. He is still in good spirits and is ready for today.


Thank you all for the continued thoughts and prayers for our amazing little man.

Saturday, September 4, 2010

Surgery scheduled

DJ was admitted for a two day stay at the Children's Hospital from September 1st -3rd for an extended EEG. While we were there we met with the epileptologist that DJ's neurologist turned his care over to. We also met with the neurosurgeon that will be preforming DJ's hemispherectomy along with the speech, physical, and occupational therapists that he will be working with after surgery.

We have set the date for surgery for September 8th at 8:45am. Tuesday the 7th DJ has three different appointments to prepare for Wednesdays surgery. Due to the rapid progression of DJ's condition it is in his best interest to have the hemispherectomy sooner than later.

As early as 48 hours after surgery DJ will start therapy to help regain his speech, movement in the right side of his body, and all other basic skills he could possibly lose from surgery. 

We'll post updates as soon as possible. Thank you all for the love, support, kind words, and especially prayers for our little man.



Tuesday, August 31, 2010

This is DJ...Dino Christopher Rivera Jr.

     On July 4th, 2010 he was your typical little 4 year old boy, just shy of his 5th birthday.  A few days later life changed for DJ as well as for everyone that knows and loves him.  
      After a night of enjoying the holiday with friends it was time to head home.  DJ was told to get his shoes on but complained he couldn’t put on his right shoe.  Like any other tired 4 year old being difficult is pretty much the norm.  The next day he mentioned his leg was bothering him.  At his age growing pains are normal so there was not great concern of something being wrong.  
       July 6th things proved not normal…..  DJ was rushed to the emergency room at 2 a.m.   His right leg had started jerking uncontrollably.  The hospital couldn’t determine a cause.  The following day DJ saw his pediatrician and with no symptoms showing up during the visit the doctor could not find a reason for what had happened either.       
      About a week passed and even though the jerking in his leg seemed to go away you could still see twitching and fluttering in his foot and toes.   On July 20th, the night after DJ’s 5th birthday, as he was falling asleep the whole right side of his body began jerking uncontrollably.  It was like an epileptic seizure but he was totally conscience, aware, and frightened.   He was once again taken to ER but this time they did a CT head scan and it was recommended he have an outpatient EEG followed up with a neurologist.
       It was July 28th when DJ had his first EEG at the Children’s Hospital along with blood work.  All showed nothing abnormal.   On July 31st, with the continued jerking and unable to sleep, DJ started complaining of the pain he was experiencing.  Another trip to ER and this time he was given steroids, an antibiotic, and Valium for the pain and to help him sleep.   Doctors were suspecting something called Chorea.   It is brought on by an untreated Strep infection or possibly Rheumatic Fever, but all DJ’s blood work showed no signs of infections.  DJ was referred to his pediatrician for an EKG and ECHO referral as Chorea could damage the valves of his heart.  August 3rd the cardiology report came back good, everything was normal with his heart.
          On August 4th DJ was admitted for three days to the Children’s Hospital in Aurora to undergo a total work-up which included massive blood tests, urinalysis, a second EEG, an MRI, and a Spinal Tap.  All medications previously prescribed, with the exception of Valium, were discontinued and he was started on anti-seizure medications.
         DJ wasn’t your typical little 5 year old boy anymore.  He couldn’t run and play with his friends, roller skate, or ride his bike.  He was due to start Kindergarten on August 19th but since his release from the hospital the frequency as well as intensity of his muscle seizures increased.  Doctor’s were working hard for a diagnosis.  Results were indicating EPC (Epilepsia Partialis Continua).
         When the first day of Kindergarten started, DJ was there.  He only made it about 30 minutes with Mommy at his side.  During the short period of time he experienced four episodes.  He wanted to go the second day but the muscle seizures sent him home within an hour and a half.   By Monday, August 23, with seizures more intense, his mobility had decreased greatly.  It was that day the call came from the doctor…..  as far as a diagnosis they were leaning toward Rasmussen Syndrome.
   Rasmussen syndrome: A brain disorder caused by inflammation of brain cells in one hemisphere. Its cause is unknown. Rasmussen syndrome causes seizures often difficult or impossible to control with medication, and eventually results in brain shrinkage (atrophy). Treatment is with surgery, if possible. The inflammation seems to stop of its own accord eventually, but the damage done is irreversible.
It is also called Rasmussen encephalitis. There are frequent and severe seizures (convulsions), progressive loss of motor skills and speech, hemiparesis (paralysis on one side of the body), encephalitis (inflammation of the brain), dementia, and mental deterioration. The disorder affects a single brain hemisphere (one side or the other of the brain but not both sides) and generally occurs in children under the age of 15.
The standard treatment for Rasmussen's encephalitis is surgery to remove or disconnect the affected part of the brain (hemispherectomy). Anti-epileptic drugs are usually not effective in the long run in controlling the seizures. Alternative treatments may include plasmapheresis (the removal and reinfusion of blood plasma), ketogenic diet (high fat, low carbohydrate), and steroids (cortisone-like drugs).
The prognosis varies. Untreated, the disorder may lead to severe neurological deficits including mental retardation and paralysis. In some patients the surgery decreases the seizures. However, most patients are left with some paralysis and speech deficits.
Rasmussen's encephalitis is believed due to a number of causes. In some cases there is an abnormal immune attack against what is called the glutamate receptor GluR3. Antibodies directed against GluR3 have been identified in patients. (Reference: Rogers et al.: Autoantibodies to glutamate receptor GluR3 in Rasmussen's encephalitis. Science 265: 648-651, 1994.) Plasmapheresis (skimming off the blood plasma) has been tried (to remove the GluR3) but the improvement was short-lived.
      A PET scan and Testicular Ultrasound were scheduled for August 25th.   Now, with the possibility of Rasmussen Syndrome, the doctor also scheduled DJ to undergo IVIG (Immune Globulin – Intravenous) for 8 hours August 26th and again on August 27th.  He was able to do this on an outpatient basis in the Infusion Center at the Children’s Hospital in Aurora. The treatments, at this time, seem to have done some good.  DJ’s right arm has not seized since the first treatment and as of this writing, after the second treatment, his leg seizures have also slowed some, both in frequency and intensity.  
      IVIG however wasn’t a total solution or cure.  Results of the PET scan came in, and even with the positive outlook from the treatment there were concerns about what was next.  With the PET scan showing abnormalities the original MRI was re-read.  DJ was scheduled for his second MRI and a fourth EEG.  The MRI was done on Monday, August 30 and his overnight stay at the hospital for the EEG, September 1st.   His MRI results showed more shrinkage on the left side of his brain which confirms the Rasmussen Syndrome diagnosis.  DJ will soon be scheduled for a hemispherectomy.
       The hemispherectomy will remove the part of DJ’s brain affected with Rasmussen.  It is unknown, until a detailed evaluation by the neurosurgeons is complete, if a portion or the entire left side of DJ’s brain will need to be removed.  Surgery is the only way to totally arrest Rasmussen Syndrome.  The thought of such an invasive surgery is scary but case studies show the younger the patient the more plasticity in the brain for the remaining side to take over and start gaining back the skills lost from the portion removed.   Time is of the essence.  His motor function on the right side, at this point, has been the only thing affected by the seizures.   
        After the surgery DJ is looking at an extended stay in the Children’s Hospital for his recovery.  He will undergo extensive physical, speech, and occupational therapy.  With hope and faith he will soon be back to the energetic, happy, social little guy he was before Rasmussen’s interrupted his life.