EEG and MRI

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.........

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.

Early Intervention

I was not familiar with Early Intervention until it was time to call them for Cole.  I knew his speech was delay but never realized what other areas he was delayed in.  I worried that Cole wouldn't get help with speech because he didn't qualify.  According to EI you need to be delayed 33% in one area or 25% in 2 areas.  I thought Cole was only delayed in speech.  I found out he was delayed in 3 areas at least 25%. I was so upset and felt that this was all my fault.  I still feel that guilt but tend to push it to side because focusing on helping him is more important.  After reading a couple books on speech delay and also autism I realized had I picked up a book I would have learned about EI sooner.  I am glad my pediatric doctor  recommended EI to us.Not only has Noreen and Melissa from EI helped Cole they have been a great support group for me.  They prepare me for all Cole's appointments and just help me realize that no matter what I am doing the best for Cole.  They have become a part of our family.  On the down side of EI they only work with your children until 3 and then they transition them into the school system.  I still have time for that but still worry about it for Cole when his time comes. My advice is that if you have a child who is delayed and you are worried EI is a great help.

Return to Speech

So many people know I gave Cole a spring break from Speech at the hospital and from EI.  Until Cole has been diagnosed I figure he deserves a break.  He enjoyed going to BounceU, shopping, having lunch with mommy and daddy and playing with friends.  I worried that today he would not adapt well to returning to speech but he had no problem.  He actually got upset that the learning toys had to go away because our session was over.  He is not babbling as much as I would like to the speech therapist.  He seems to do more at home then out at speech.  My goal is going to work on that with him and hopefully get back into the swing of our sessions.
I am also waiting to hear from CHOP.  I am really hoping to hear from them before Tuesday but am starting to think I will have to call them.  My hope is to make sure Cole is receiving the proper therapy before I actually graduate from school.  I want to know that when I start work that Cole is getting the help that is needed to get him to speak,respond to his name and interact with other children.
I don't know who reads this blog but i know that it at least gives me an outlet to express what Cole is doing and how I feel.  I hope that one day this blog helps someone else to.

4/26/11

Cole has had a week and half off from all sessions.  He seems to be trying to say ma but not there yet.  We went through a time where Cole would not take his Omega-3.  I noticed that the babbling had slowed down and we are hoping to be able to start this back up this week and see progress.  I am also waiting on a call From CHOP who will hopefully give us a second opinion.  I also have started doing research on autism.  I am no longer upset about this being a possibility but still wish that I have been over reacting.  I notice myself feeling bad when Cole is around other children who can talk and he can't. I also worry about teaching him sign language when the children he is around don't know sign language.  He tried signing to another child and they had no clue what he was doing.  So I still feel upset and wish that there was something more I could do or wonder why Cole is having this problem.  I wonder what I could have done different and how it might have helped him now.  Thankfully my husband keeps reminding me that things will get better and that we will get Cole to where he needs to be.  So I will continue to pray, research and work on his therapy even if I don't have EI or speech at the hospital.
So if I have anything to offer another mother dealing with a speech delay child it would be to keep your head up.  Things will get better and as frustrated as you are so is your child.  I would also hope that parents will find someone to talk to even if you need to email me. So my hope is to start blogging everyday again and to make sure I write about the progress, test and doctors we visit. Tomorrow starts the beginning of speech again.....

Update

So its been a long time since I actually blogged....I got off track with everything going on.  We had the evaluation at the neurologist and well the news was not what I was hoping for.  It seemed like my word came to a stop and I just couldn't deal with the news.  I walked out of the office and tried not to cry.  My grandma had said that the doctors at the hospital were the best and now they were telling me it could be 3 things.  We are now looking at Autism (which I wasn't upset about just the fact she scared me with the seizures he could have), learning disorder that is showing now but we would affect him more when in school, or a problem with his brain.   The doctor gave me scripts for all these different test and told me she would see me in 3 months. All I could think of was I didn't know what was worse the test to see what the problem was or the actually diagnoses I would have to deal with.  So after taking the day of processing it I decide it was best to actually have a second opinion done.  So I am now waiting on CHOP to call me to make this appointment.  This seems to be the hardest thing n the word waiting and seeing what may happen.  I also gave Cole the week off to relax from Speech therapy at the hospital and EI this week.  I figured he works hard and needs a break from all this and I need time to process what we were going to have to deal with next.  I look at Cole and then look at kids around Cole's age and wonder what he would be saying if he was talking.  I guess that's why its best to take one day at a time.  I am so blessed to have a wonderful child and so proud of how strong he is to be able to handle everything he does..

Tomorrow is hopefully the last evaluation

I sat in class today wonder what tomorrows appointment will bring us.  On one side I would love to know if Cole has a speech disorder but on the other I just hope that I am overreacting to this speech delay.  I am preparing for the doctor to say he needs to see Cole again before he will diagnose him. This would leave me with no answers and hoping that what Cole is doing now is enough.  I have so many feelings going through me and I can only imagine how Cole feels.  He has seen and Audiologist, ENT, his pediatric doctor, Speech therapist and evaluated by EI. Now he will see a neurologist and maybe a ped neurodevelopmental doctor if the neurologist feels he needs to.  I pray that tomorrow comes answers and a new goal plan for Cole.  I am not a big fan of the speech therapist we have outside of EI and I am hoping to hopefully get our speech therapist through EI in here at least one extra day a month.  So until tomorrows post and hopefully some answers........