Thursday, July 21, 2011

End Results of EEG

So I am sorry for the people who have been reading for not updating sooner. The hospital had us on minimum cell phone and laptop usage. So as much as I wanted to post the whole time I was there I was unable to.

Day 2 of the EEG was long. Cole's first night in the hospital he only got 4 hours of sleep. It seemed like every noise made in the hospital woke Cole up. He didn't bother pulling at the cap or anything that they had on him. The doctor came in to give us and update on the reports as of 9am the Cole had no seizures. His brain activity was registering at an 8 when children his age normally register at a 6. Cole is registering at a higher age group. That was the best news I could get that day.  Since Cole had not slept well he took a 4 hour nap while my family visited.  I am so thankful for the visitors we had, it made the day pass a little faster. Cole was such a trooper through this whole process.  By night time Cole and I were both tired of being in the room. Because the were videoing the EEG Cole was stuck either in the crib or on my lap. He had to stay in the camera area. The wanted to make sure if he had a seizure that they knew what he was doing and could see if that was a trigger.

Day 2 night: Cole didn't go to sleep until 11pm. He was tired, bored and just wanted to run. I hoped and prayed that the doctor would come in early and we would be discharged by noon on our 3rd day.  Sleep went a little better but not great. He still woke up through the night but not as much. Waking up in the middle of the night was also when Cole was done having the electrodes on his head and decided to start itching and pulling at the cap.

Day 3: I worked hard trying to get Cole to sleep in. I knew he would start attacking the cap as soon as he was up. He was up at 5:30 am since our roommate was up because he needed meds. We really had a great roommate the whole time we were in the hospital. Cole was able to sleep a little more and was up again at 7 and then back at 8:30am.  By 9am in the morning I decide that Cole needed to run and actually let him out of view of the video camera. He loved that time he had. The doctor came in at 9:45 and told us that Cole was seizure free. Thank God for no seizures. She asked to follow up with Cole in a week to be able to give us all the information we would need. She said Cole has regressive autism. She explained it as the autism was the cause of his regression and losing the words he had.  I was happy to finally have a diagnoses. We do have to have one more test which is an MRI in 6months. The doctor wants to rule out white matter disease. Cole did not handle having the electrodes taken off.  He cried like someone was killing him. The process to get them off was not horrible. The first unplug the electrodes from the box. They then take off the cap and cup the gauze off that is wrapped around the child's head. Once that is done the start putting spraying water on the electrode area. They use some kind of stuff that looks like cement to hold the electrodes on. The water helps to loosen it up and then be able to take electrodes off. Once they were finally off I took Cole for a run in the hallway. After that I had to use a wash cloth to get the rest of the stuff off his head. 

I am still processing the diagnoses of Cole. I thought I had accepted autism and was researching different things you can do with a child. Unfortunately as I laid in bed last night I realized that even though this is not the worst thing that could happen why did it have to happen to Cole.  Why does Cole have to have this challenge in life? Did I do something wrong while I was pregnant? Maybe if I had breastfeed longer and not given up so easily this wouldn't be true.  I look and listen to other children making their milestones and wonder how much longer it will take Cole. This is the first time sharing these feelings I know I need to get off the pity train and move on. I know that i will be on the pity train for a while but it will be an inner self fight.  I plan to start looking into things that could help Cole more. Although I don't know know as much as I like about autism my goal in life will be to help Cole and ensure him that he is no different. Autism is a label and that is all it will ever be. It will not define my child.

Monday, July 18, 2011

End of Day one for Cole's EEG

So it wasn't until about 230 that they finally came in to hook Cole up to the EEG machine. I wanted to actually video it but was unable since I was holding Cole down.  I think I am more traumatized then Cole is for this experience. It took about 45 min for them to completely hook him up and most of the time Cole was in tears. The placed a little over 20 small electrodes to the child's head and then place 2 self adhesive electrodes to the forehead above each eye. They also attach 2 heart leads and once this is done they then wrap the head up in gauze. They then add this sock looking thing over the wires and place it on the child's head. I thought when we came that Cole would at least be allowed to walk the room but it looks like he is stuck in his crib or on mommy's lap. He can't go to far since his wires attach to the wall to compute to the nurse. As prepared as I thought i was for this trip I was clueless to what I would need. I was successful on videos to watch but we don't have enough toys to keep us busy. I was also very thankful to my sister for keeping Cole company and bringing dinner to me. Tomorrow is day 2 and the doctor should be in and I will hopefully know if we have had any seizure activity since being hooked up. I added a picture of Cole after being hooked up. Until tomorrow......

EEG the first few hours

So we were told last night that we actually had to be at the hospital an hour earlier. I am not sure why we came earlier since its 1pm and we are not hooked up to the EEG machine yet. So here is how our day went:
We checked in with admitting were my adorable son keep flashing the lady with his magnificent smile. Once she put the bracelet on his ankle Cole's feelings were hurt and he decided to show her by crying. Shortly after that and a few laps around the waiting area we were brought up to our room with another family.  Cole will spend the next 3 days with another child who is about a year younger then him.
Next the nurse started her round of questions and getting Cole's vitals. The doctor also came in to speak with us. She gave me the load down on what would be happening and ordered blood work.She said that Cole would not need an IV so they would end a phlebotomist up to take his blood.  While the doctor was in the room we were able to talk about what her diagnose of Cole is. Its official he has Autism we are just trying to see if the regression is from focal seizures. I thought I was prepared to hear those words after all the research I have done but I just want to cry. Enough about me back to who this blog is truly about Cole.  I am hoping to post a video of the EEG process but am not sure if I will be able to. So until the next portion of our day....

Saturday, July 16, 2011

June 16,2011

I am sorry for everyone who reads this that I have not blogged lately.  I have spent a lot of time finishing school, extern and taking my national test in hopes to better our family.  My hopes of blogging regularly has been just that a hope.  With that being said I am blogging today to update:

Cole is now saying E-I-E-I-O. For parents of nonspeaking children you can imagine how happy I was. I videoed him and called my grandma to let her hear. It was one of the best days in my life. 

The PECS system is coming along and Cole is now starting to pick between 2 cards. He seems to love to torture Noreen and make her sing the Itsy Bitsy Spider song even though he doesn't like the song.  He smiles every time he picks the card even though he really wants to finish the task he started.

Monday we head up to JFK hospital for Cole's 3 day EEG. My goal is to keep him happy and also try to video the process. I am hoping that we will come out of this experience with a diagnose of no seizures and a video for parents who will go through this. I have googles looking for videos of what I have to expect and have found none on a toddler. I know that they preform these on toddlers but no one has posted them.  The hospital only allows one parent to stay with their child so I will be at the hospital alone. I am hoping to have family and friends who live by the hospital actually come visit us to keep Cole company. So I will keep everyone posted on this fun adventure we have.

So until Monday remember no matter why your child is delayed they will always be perfect in their own special way.