Sunday, November 20, 2011

Feb., 2011 posts

Latest on Dylan

Hi Everybody,
I just wanted to let you all know what has been going on recently with Dylan. 
On Tuesday 1/25/11 at school Dylan’s teacher sent him to the nurse, who called me because, he was very quiet in class, acted sluggish, and then she said he just fell asleep at his desk in class, by the time he got to the nurse, he was not oriented to the time or day, pupils were fine, had a fever of 99.0, so she elevated his head and let him continue to sleep until I picked him up.  When I got there, he woke up, it took him a while to realize what was going on, we went home and he was fine the rest of the day.  Then on Sunday, 1/30/11, at church he was in Sunday school, he bent down to pick something up, when he went to stand up he hit the top middle part of his head on a metal bar (apparently not very hard, I was not there to see it),  the teacher asked Dylan if he needed her to come and get me and he said no.  Then shortly after that during class, he fell asleep.  When class was over it was hard to wake him and he did not know his surroundings, he looked like his eyes were glazed over; when I called his name he would not answer, he was very sluggish and not with it at all, and he looked like he was walking in a trance almost. (this kind of scared me)  After about 10-15mins he was back to normal like nothing happened. 
Dylan is also still having the short-term memory issues and some cognitive deficits which is affecting his school work.  And he still has lymph node knots on the back of his head and neck that have not gone done since his surgery.
I emailed all this information to the doctors at Duke and this is what they told me to do:  (this was this past Monday)
He needed to be evaluated by a pediatric neurologist and have an EEG done along with CT scan if necessary. The CT scan is to help rule out any hydrocephalus (fluid in the brain), or any brain bleeds, and the EEG tests the brain waves and can check for various things, in Dylan’s case it would be possible seizure activity.  They are also looking into the data from the radiation that he had this past summer at UVA, to see if it has anything to do with his cognitive decline.
I wanted to see if we could get all of this done locally, so, I talked with Dylan’s pediatrician on Monday afternoon, filled her in on what Dylan’s doctor wanted done (sent her the emails also), trying to get everything done locally so we could just fax everything to Duke.  His pediatrician was able to get us an EEG Tuesday, but no CT scan and no appt with a Pediatric Neurologist b/c there are apparently only 2 in this area and they are booked until April! So, Dylan got the EEG done at Rnke Memorial, but it was VERY VERY PAINFUL and difficult for him, he kept crying and screaming because his head hurt so bad when the nurse pressed the little knobs to his head, I guess because it is still healing and VERY SENSITIVE!
Since there was no order put in at the hospital for the CT scan and there was a huge wait in the ER there, we left there about 345pm and went to Lewis-Gale ER.  When we got there I just told the doctor that Dylan had recent brain surgery, we needed a CT scan done to rule out hydrocephalus or bleeds, we were checked in and in a room within 5mins!  The CT was done about 15mins after being there, then we saw the doc he told us everything was normal, then he put all his written notes on paper, prepared the images onto a CD for me to mail to Dylan’s doctors at Duke and we were on our way, only there about 2 1/2hrs! (so Dylan and I spent about 9 hrs doing all this on Tuesday) Dylan was so exhausted after all this, so he stayed home and rested yesterday and went back to school today.  Presently we are waiting for the test results from the EEG.
Here are the upcoming appts. that we currently have scheduled for Dylan at Duke:
1) Tuesday 2/15 @ 1030a.m.    Pediatric Neuro-ophthalmology
     --to check the brain fluid behind his eyes & around his optic nerves--
2) Wednesday 2/23 @ 1p.m. (4hr appt)     Pediatric Neurology Study Center
     --to check his short-term memory and cognitive deficits--
Please continue to pray, when I hear about the EEG I will send new update out,  
GOD BLESS YOU ALL!
The Praters 
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EEG RESULTS


Well friends we got the results from Dylan's EEG, the reading is abnormal, however, the doctors at Duke said that the reading of the results that were done here by the local pediatric neurologist are very wishy washy and don't make sense.

So I talked with the Duke doctor's on the phone yesterday about the EEG, and they asked me if Dylan was seen by the doctor here as he requested, I explained to him that I was told the doctor here did not have ANY openings until April, Dr. G, at Duke was VERY UPSET and said "that is unacceptable!" I also told Dr. G how painful the EEG was for Dylan and that he still has the bumps on the back of his head and neck, since the surgery. He told me he wants to get with Dr. Grant, the neurosurgeon, and set up something down there with their EEG DEPT, as well as some other testing to see what is going on, AND that we will NOT be doing anything else locally, everything will have to be done at Duke. So much for trying to save time and a long drive, learned a good lesson! Anyways, we are now waiting for our appt to Duke, which will probably be this coming week. So we will be driving back and forth to Duke once a week for the next four weeks.......SUCH FUN! 


Will keep you posted, need prayers. : )
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UPDATE for EEG


Just want to let you all know, I just heard from Duke Hospital about Dylan’s appointments. He already had a pediatric neuro-ophthalmology appt. scheduled for this coming Tuesday at 10:30am, so the doctor added a second appt, the same day to see a pediatric specialty neurologist at 2:30pm. This is pertaining to the abnormal EEG from last week, as well as, the sleeping, bump to his head, the lymph nodes on his head that have still not decreased since surgery, and a few other things.  We will have a very busy and VERY LONG day on Tuesday, please keep our family in your prayers. Hopefully we will return on Tuesday night, I will keep everyone posted as I can.

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Duke appt 2-15-11

Tuesday February 15, 2011 at 10:27pm
We made it to Duke safely this morning around 9:45am, which gave us plenty of time to stretch and walk around after our 3 hour drive before his first appt at 1030. 
Dylan completed 4 to 5 different eye exams this morning, and we got GREAT NEWS.... Dylan's eyes and optic nerves are all normal, PRAISE GOD!  After those results we went and ate lunch, now we are back at the hospital waiting in the room to see the specialist.......he will probably want to order more tests....that's my guess. 
Dylan saw the Pediatric neurology specialist who did a very thorough history about Dylan and all of our concerns, then he did a great exam on Dylan. He recommended that Dylan have another EEG done (which I thought we were doing today), also a full MRI of his spine because Dylan has been complaining of tingling and pain in his lumbar region. When the doctor examined him there it also hurt to touch, this has been something that has been an issue off and on for a while. All the scheduling people were gone by the time we left, so I will be on the phone tomorrow getting these appts set up, hopefully the same days as our upcoming appts. We are home safely now, I will post more detailed info tomorrow, I am exhausted right now, going to bed.
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Duke appt cont....

Wednesday February 16, 2011 at 9:15am
TODAY..... After a good nights sleep and a great cup of coffee, this is what I have been working on for Dylan today; The specialist that Dylan saw yesterday.....Dr. Mikati, wants him to have an EEG done next week on the 23rd in the morning, because we will be there anyways for another appt at 1pm., so I have a phone call in to Dr. Mikati’s nurse about scheduling that. Once again, the reason for the EEG is because the reading that was received from the doc here at Roanoke Memorial was to wishy washy, did not make sense, and they want to rule out seizure activity.
Next, Dr. Mikati ordered a full MRI for Dylan’s spine because of the tingling and pain in his lumbar region, I am in contact with the nurse about the scheduling for that, we are trying to get that scheduled the same time as his brain MRI that was originally scheduled for 800am on 3-3-11, but we may have to go the night before on 3-2-11 at 8pm in order to get them all done at the same time.

Dylan also has his post-operative 3month follow-up appt with Dr. Grant (Neurosurgeon) on 3-3-11 at 945am and the cancer specialist Dr. G on 3-3-11 at 1245pm. This is the BIG appt that will tell us if any new growth has appeared from the tumor and also if the skull bone on Dylan’s head has healed properly. They will also go over the brain and spine MRI with us.
Now, since Dr. Mikati is involved he would like to see Dylan again on 3-2-11 late afternoon to go over the EEG results (assuming we can get an appt for him on the 23rd). He also asked us what the plan for Dylan was going to be as far as follow-ups, treatments, etc, we told him we were not sure yet that we are waiting to see the docs on 3-3-11. So he will also be seeing Dylan after that date depending on what type of plan is set up for Dylan.
So, as I learn more about exact appt times or if anything changes I will continue to update you all.
Thanks for all the support and prayers.

Sincerely,
The Prater Family

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Finalized appts


Hi Everybody,
First, I forgot to tell everybody something that happened while we were at Duke this past week..........
When we walked into the Children's Hospital there was a huge area on the main floor set up with a local radio station (101.5 Durham), doing a live Radio-Thon to raise funds for the Children's Hospital.
At first I was just curious, so I did not do anything, but as the day went on, and we kept walking past it,  I decided to go check it out.  When I did, I learned that they had people set up to listen and write down stories of individuals that had been treated at the hospital; so Dylan, being the people person that he is, happily agreed to tell his story, from the VERY BEGINNING at UVA and how we ended up at Duke.  So with my help we ended up telling Dylan's whole story, the lady doing the interview was speechless, and she kept rubbing her arms because of all the goose bumps she kept getting.  She was in aww of Dylan's story, she said she had never heard of anything like it and she wished that she could have put Dylan on the air live but all the time slots had been filled.  She did say she would read his story on the radio and we gave her our website www.fighting4dylan.com for people to visit to get the full story.  She also told us that they pick one child a year to be their story of the year for their magazine and she was definitely going to see about making Dylan that child,   
ISN'T THAT AMAZING!
Anyways, here is the latest, after spending the last two days on the phone and computer with the secretaries in various locations at Duke Children’s Hospital, we FINALLY have a new updated schedule of appointments for Dylan for the next two weeks.
FOR NEXT WEEK:
On Wednesday February 23, 2011 Dylan has:
1) Pediatric Neurology Study Center @ 1pm (4hrs)
     --to check his short-term memory and cognitive deficits--
On Thursday February 24, 2011 Dylan has:
1) EEG DIAGNOSTIC TESTING @ 1PM (this will last approx. 2hrs)
     --to check his brain waves for any possible seizure activity and/or any other  abnormalities
 FOR THE FOLLOWING WEEK:
 On Wednesday March 2, 2011 Dylan has:
1)   Follow-up appt. with Dr. Mikati for EEG results @ 315pm
2)   MRI scans of brain and spine @ 8pm (will last approx. 2-3hours)
 On Thursday March 3, 2011 Dylan has:
1)  3 month follow-up appt. with Dr. Grant Neurosurgeon @ 945am
   --to see if the skull bone in Dylan’s head has healed--
2)  3 month follow-up appt. with Dr. Gururangan @ 12pm
   --to see if any new growth has shown up from the cancer cells--
So needless to say we will be very very busy for the next two weeks with our family.
FOR INFORMATIONAL PURPOSES.......if anybody is interested in purchasing any more “fighting4dylan” bracelets to help our family with costs to and from Duke, they will be available for $5 at Hollywood Hair and Nails in Salem located on Main Street in the same Bldg as Movie Starz, on the side of the bldg towards the back. Their ph# is 540-375-3626         
DONATIONS are also accepted at this location.
If anything changes I will send out an update.....if I have time!
Thanks to everyone,
The Prater Family
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Duke update


Well Dylan went for his four hour testing today at Duke, however, he was not able to finish it because he got too tired. So tomorrow he will go back to finish his testing at 1030am, and then he has his scheduled EEG at 100pm, hopefully everything goes as planned. Good thing we planned on staying overnight here, will update more tomorrow.
Thursday, February 24, 2011 at 2:33pm
Good afternoon, Dylan went 4 his testing this morning & was able 2 finish it with a couple of breaks. We then came 2 the hospital for his EEG testing at 100pm. All the measurements & leads were put on his head, WITHOUT ANY PAIN this time, & he is doing the sleeping part of the test right now for about another 15 mins, then he will have an awake test done. Then, hopefully we will be done! 
Thursday, February 24, 2011 at 6:15pm
On our way home from Duke, Dylan's testing went well, but we won't know anything about his tests until we return next week. It seems like when we r here we constantly run, don't get much down time. It's really kind of exhausting, especially with all 3 kids, but I just keep reminding myself God is Good & he will NEVER give us more than we can handle!
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