MRI Results

We it has taken me a few days to actually blog the results of Cole's MRI. Although it was not horrible it was still not the results I had prayed for. His MRI shows no change which means we are still at risk for the White Matter Disease. Although the results were not bad and it was better then them giving him the diagnoses of white matter disease I still broke down. I am at a point in my life where I am wondering how much more Cole has to go through.  I know that their are other children in this world that have to go through worse, but as Cole's mom I never thought this is what our life would be. I want the best for my child like most parents do and sometimes wonder why Cole. I have to say the support of friends and family was great and although I am still sad I am trying to just not think about it too much. Of course in December I will have to speak to his doctor and decide with her when we will repeat the MRI and pray until then that we can finally rule this out. I want to end this blog with the chores of Rascal Flatt song My Wish:
My wish, for you, is that this life becomes all that you want it to,
Your dreams stay big, and your worries stay small,
You never need to carry more than you can hold,
And while you're out there getting where you're getting to,
I hope you know somebody loves you, and wants the same things too,
Yeah, this, is my wish.

MRI

On Monday Cole went for his 6 month MRI to rule out White Matter Disease. White Matter Disease effects your muscles and speech and so on. When he had his MRI to rule out autism they listed it as a possibility that he could have it or it could be his age. We are hoping its his age and that this one will show that everything is fine. We are awaiting the results very patiently but I am hoping I get them today. I was hoping to write on Monday about the process and how great Monmouth Pediatric Day Stay unit in NJ was.

MRI Day: Cole was due at the hospital at 9am and had to stop eating at midnight the night before. He was allowed to have some water or apple juice before 7am but Cole is never really up that early. Cole did wake up at 7:30am and was looking for food and his milk but he was easy to distract. We got out of the house at 8 and was at the hospital by 9am. I believe we had the same nurse as the last time we were there. As soon as they had to start taking vitals and listen to his chest Cole flipped out. Ever since his EEG and being in the hospital he just doesn't like any medical people touching him. I was able to ask the nurse for the oral med that helps kids relax and they don;t remember the procedure they are having. I don;t know the name but if you have a verbal child they might start slurring their words and walk funny. I am hoping this helps with Cole getting over his fear of medical personal. Next was IV time. Since he had to get an MRI with and with contrast he needed this plus his sedation was going to be given through this. Once the IV was in the nurse let me carry him to the MRI room. The technicians were great there. The one told us his child had to go through this and told us what we could expect when the sedation was given. Cole was put on the MRI table and the sedation process started. For anyone who has not had a child IV sedated let me say you want to cry and are happy they wont remember anything all at once. I was able to hold his hand while they put him out and got him set up for the MRI. He had to be monitored by an EKG and they had to put the bars up for him to be set up in the MRI machine. Once they were set up it was time for us parents to leave the room. The one technician told us he would keep us posted on how he was doing and how much time was left. It felt like hours had gone by when really it was 45min. I was told by the doctor, nurses and technician that Cole did great. they also were able to take his IV out before he woke up so he really wouldn't remember it at all. I was so thankful for this.  Since Cole was not still coming out of sedation the nurse let me carry him back to the day stay unit. All seemed like it was going well he was slowly coming out of sedation and was really thirsty. We had 4 small containers of apple juice probably before we actually made it out of the hospital parking lot. I of course stopped to get him something else to drink and we made it home. Of course looking back I wish I would have slowed him down on his drinking because when we got home all the juice came back up. Not only did we have that but we also had a diaper explode because he had diarrhea.  Once that was through his system it seemed like he was back on track. He did crawl for most of the day because when he walked he looked like he was drunk. All in all I think the day wasn't horrible. Even though the day was not horrible I am hoping this is our last MRI until Cole can understand what an MRI is. I have to say thank you to the wonderful nurses, technicians and doctor from Monmouth hospital. They really helped us a lot with making this the best trip that it could be.

If I don;t blog on Happy Thanksgiving To Everyone.

Rough Spot

I feel like every so often I hit a rough spot and need to get renewed in the dedication I have to help Cole.  Don't get me wrong I am always doing something to help Cole but I do have days where I want to curl up in bed and cry still. It always starts with will Cole ever really talk and then I start thinking about his future and what will happen. I just want Cole to have a life he can enjoy and where he doesn't get picked for being autistic. Every day you can see this light for loving life in his eyes. I always hear what a happy child he is and I just want that to continue through his life.  I want to keep the hurt and nasty people away from him as long as I can. I know that he will have to deal with it one day in life but the longer I can protect him the better I will feel that I did a good parenting job. I want Cole's life to be as perfect as I can provide for him. I want him to experience the joy of holidays and family traditions. My wish for Cole is that I give him the best childhood he could ever ask for and that one day he will be able to tell me that. I found this autism awareness video that actually expressed how I felt and how even though I have mourned the fact that Cole has autism its an ongoing battle for me. I accepted who Cole is and that autism is just a  piece of his character but it still upsets me to think of his struggles in life. So I wanted to share this little video and ask how many other parents could relate to this?

http://www.youtube.com/watch?v=x6Nm2ECx_nw&feature=player_embedded

Eye Doctor Appointment

I was hoping to actually blog about this on Monday night or Tuesday the latest but its been a busy week.  So we arrived on time to the eye appointment and the office was just wonderful. It was filled with toys and the staff was great.  The doctor actually on did 2 test on his eyes. The first is to just look at his eye like most of our pediatricians do. The nice part to this was he had a little fan with lights on it to have Cole follow and actually be able to look at his eyes. The next step was to actually dilate his eyes. I was not looking for ward to this but the nurse was quick and he cried for a split second. Once the drops were done it was time to wait and they let him back into the waiting room to play. We were in the waiting room for about 15 minutes and then time to go back in. They actually had Cole sit on my lap so that they could use this machine to take picture of the vessels of the eyes. This was a little hard because we had to hold his head into the notched area so they could take the picture. He did rather well for this process and stunned the doctor with the pictures they got. Once again he looked at his eyes again with another instrument and then the diagnoses came. He is perfect! It was so nice to hear good news. I actually responded with "someone who actually feels the same way I do about Cole."   Cole's eyes were dilated the whole day and kind of funny. It didn't seem to bother him and I can say that this visit to the doctors was not bad. I need to thank Dr. Engel and his staff for making this such a great trip.

10/30/11

I wanted to update on how things have been with Cole since the Mommy/Cole meltdown.  It seems that we are back on track with life. He is signing for what he wants if its a sign he knows. He is still doing the open sign but not always at the right times. So we are still working on that with him. After speaking to Cole's EI ladies the frustration might have come out of the drama weekend we had. Mommy started a new job along with some family issues that finally erupted. So we think Cole's meltdown might have been the fact that he had no way of expressing how he felt during this time. So I am now working on keeping family issues away from Cole and reducing the stress. Until Cole can express himself they way he needs too with out meltdowns our house will be as stress free as I can make it. 

Tomorrow Cole goes for his eye appointment.  I just filled out the 3 pages of new patient paperwork in hopes that we wont have to be there 15 minutes earlier. I am curious to see how this appointment goes since we don;t do good sitting for long periods of time. He seems to sit well during EI but he is still fidgeting a little. I hope that this goes smoothly and it doesn't set Cole back any further with health care providers. After having his EEG done Cole prefers to not be around doctors or nurses and if they touch him he starts to cry. I am trying to help him get over this but its a slow process. I will try to post tomorrow about the process and maybe even get some pictures up too.

To everyone who lives in Toms River,NJ Have a happy and Safe Trick or treat day and for everyone else have a safe and Happy Halloween.

Mommy Meltdown

I started this post last night but due to Cole's and my meltdown I was unable to finish. I love Cole more then words could ever explain and feel like God put me on earth to be his mommy. With that being said last night was horrible. For probably the past 3 days it seems Cole has had a meltdown trying to communicate with me at night. He seems to be using the sign language open or just holding my hands to try and tell me something. I acknowledge him when he dopes this and I try to help figure it out. I don't know if this issue is from the changes we have had the last week or just another bump in the road of life.  after about a half hour of him trying to communicate he got upset which in turned made me upset. I know that this is a process in life but I don;t want to see my son upset because he can't tell me what he needs or wants.  My husband tried everything including changing him for bed in hopes that is what he wanted. Needless to say after and hour I decide we would lay down and see what happens. I spent another half hour with him crying and me too before the calm down happened. He was laying in bed next to me trying hold my hands while also trying to get comfortable. I don;t know why he needs to hold my hands while trying to go to bed lately. I think my crying had to do with not only the issue at hand but the future of Cole. It makes me said to think he could be nonverbal the rest of his life. It also makes me wonder what his future will be like and if he will do anything that my husband or I did as kids growing up.  Last night made me realize that I need to find a group gathering with other parents going through the same thing. I need hope and guidance for the future of Cole. Last night as I was laying in bed I wanted so much to call my grandma and say " Please tell me what to do to help Cole." I just wanted someone to say do this and everything would be fine. I didn't call her because I knew it would upset her too and that was the last thing we needed. I need to add the goal of finding a group meeting for autism soon. Maybe then I will have some comfort or maybe just less mommy meltdowns. Please tell me how you hand your mommy meltdowns and what triggers them?

Another proud moment/Doctors

After a long weekend, it was refreshing to see Cole has picked up a new skill.  Cole decided that he didn't want his socks off an was able to put one of his sock back on.  I knew that Cole could put on mommy and daddy's socks but struggled with his. I am hoping to try and get him to repeat this task but only time will tell if he will. Cole will pick what he wants to do.

Well I started the task of making all of Cole's appointments. So far he has a PT appointment for Nov., OT is not until March and I called to make his MRI but didn't hear back yet. I also called Cole's neurologist to get his script for his MRI changed a little.  His script is for and MRI with IV sedation and I would prefer oral sedation. Every since Cole's EEG he seems to cry every time he sees a doctor or nurse.  So I prefer to do the less invasive sedation. I hope that tomorrow the day stay unit calls me to get the appointment process started.  Well I don;t have much since I am still glowing from my proud moment....