Tuesday, May 31, 2011


Well today was the big day for Cole. He was scheduled to have an MRI and EEG with IV Sedation.  We had to sleep deprive, stop all food at midnight and get him up before 6am if we wanted him to have a drink before going on.  As most parents know my biggest worry was would I sleep deprive him enough that the sedation would work good. Well I can answer I dd it a little too well.  I spent most of the night worried about the IV while Cole sleep so good. He got up at 5:45am and took only 2 sips of his water. I figured at least he got something.  The trip to the hospital was about 40 min and well It seemed like it was hours.  Cole tried to nap but we were able to keep him up and once we made  it to the hospital he was wide awake and ready to run around again.  Let me just say this Monmouth Pediatric Day Stay Unit was awesome. The nurses were wonderful and if Cole ever has to go for any test I would take him there over any where else. His nurse explained everything and we signed paperwork, and then his doctor came over and it was the moment I dreaded.  I was ready to  hear about the IV but he stunned me by saying that their neurologist didn't want to do an EEG with IV sedation but they would do oral sedation. I thought great no needle this day might go better then I thought but then he said he may not stay asleep long enough to do both test.  If that happened we would have to come back for the other test. My heart dropped. How could I put Cole through this again?  I accepted it and got ready for Cole to get his meds.  He hates taking anything so we had to hold him down while his nurse gave him the meds.  He tried to fight the meds making him tired but finally gave in.  His first test was the MRI and he looked so helpless.  When we got to the MRI I was allowed to stay in the room while they hooked him up but when the test started I had to leave.  The nurse reassured me that she would keep a good eye on him and he would be fine.  Thankfully they put ear plugs in and cover hi ears so that he didn't have the loud sound from the MRI.  It took about 35 mins and thankfully he came out of there still asleep.  So from there we rushed him over to EEG.  This was the test I worried about.  I knew he needed to stay asleep for about and hour and once again i was left in a waiting room.  He nurse once again reassured me that she would take good care of him.  He slept so well that towards the end of his EEG they need him to wake up and they had to use a cold towel to do that.  He came out of the room still sleeping and it took about and hour and another cold towel to wake him up.  We were told to monitor him and to watch his balance. He was a trooper through all of this and woke up a happy child still. My son truly amazes me on how happy he is. He woke up thirsty and hunger.  His nurse gave him juice which it seemed he didn't come up for air until it was done. When we left we had to hold his head since he was almost like a newborn with no head control.  Thankfully that only lasted an hour.  We took Cole to lunch and then he fell back for another 3 hours.  When he woke up from his nap he tried walking for the first time and well lets just say he looked like he was drunk. It now almost bed time again for us and he is ready for bed and is close to back to normal.  Now the waiting game begins for the test results.  I tried blogging in the hospital but it seems i messed up on the set up for mobile blogging. Well until his next appointment or achievement.........

Monday, May 30, 2011

Update 5/30/11

Well I start blogging would be so much easier and I would be able to blog everyday. As you can see I haven't blogged in a little but over the next few days I have a lot going on with Cole. Cole's progress has been slow which has lead me to not have much to blog.  He has made progress but its slow progress and well it makes it hard to write anything.
 So we recently had his blood work done and I didn't realize that the blood work takes so long.  Its been over 2 weeks and I have yet to get the results.  I am hoping to get them this week.  I am also hoping that this gives us some insight in to why Cole still has no words. 

Cole also had his 6 month evaluation with EI....Let me say it was like a party here.  We had Noreen, Melissa, his speech therapist and then his social director.  Cole made a couple moths progress in most of his categorize but he is still below his age.  So we keep his goals that we started with since he is still working on them and then we also add a little to it. So needless to say we are still at 4 times a week with EI and 2 days at the hospital with his speech therapist. 

So this Tuesday Cole will be going for his EEG and MRI with sedation.  I am extremely worried about him and sorry that he has to go through this.  The hospital told us we had to sleep deprive him, no food after midnight and that he can have some water or apple juice until 6am.  Did I mention Cole goes to bed late and get up late.  He normally sleeps until 9am and well we have to be at the hospital at 8:15.  So needless to say he is already getting up earlier then normal. I am wondering how I am going to keep him up later and get him up before 6am so he could have a drink before he goes to the hospital.

These test are suppose to rule out autism and give us insight to see what it could be.  My biggest fear of all these test are not the autism but that he could be having seizures.  I have come to grips that it could be autistic.  It took a lot to get myself to the point of accepting and not blame myself so much.  I still have those days where I wonder if it was something I did.  I will never know who made Cole be speech delayed, I just know that I am doing everything in my power to help him.

Tomorrow I will try to actually post from my phone on my blog to keep my blog going and give parents who are going through the same thing some idea of what happens.  I might even start tweeting about Cole but first lets get the blog back on track.  I truly hope I am helping some parent out there and would love to hear from everyone. I hope that everyone is having a safe holiday.