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

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 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 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.