Catch Up

I know I said after Christmas I was going to make this post but once again life got in the way. So in November Cole went for his 6 month MRI to look at the white matter again. My husband and I were hoping to get the news that it had improved and it was no longer a worry that Cole could have White Matter Disease. Unfortunately right before Thanksgiving we were told that there was no change in the MRI. Since we have a great neurologist she wanted us to send her the MRI to have the hospital she works at look at them again. Since there was no change I didn't rush this time to send the scans. Looking back I wish i did rush them out. We had our appointment in December to evaluate Cole's autism and I was also hoping to go over the scans and to see when his next MRI would be. Well at the appointment the doctor proceeded to tell us that she would be looking at his MRI that Friday and that she wanted to see where the cyst was. Apparently the report stated no change in MRI with cyst on brain. Cole's first MRI didn't show a cyst so this was just heart breaking to us. It meant that I had one more thing to add to my list of worries and things to watch out for. I still don't understand why the hospital Cole had the MRI at had not red flagged this so that his neurologist would look at this first. Thankfully the news came back that the cyst is not pushing on anything in his brain right now and that we would monitor it. His next MRI will be in a year but as I right now I am thinking of asking to have one done at the age of 3 for Cole which will be in 6 months. I wish I could blog and say the appointment went great and we got great news but it seems that we keep getting bad news or I should say undesirable news. The up side to the appointment is that Cole showed better eye contact and responded to his name the first time the doctor called it. I was so proud at that moment with him. We are also saying mama and dada a lot now. So that is the MRI update that i promised I would write. I remain positive that this will  all work out but I know that as a mommy I will continue to worry. Just a heads up for my readers Cole has an OT evaluation through EI on 16th of January. I am hoping to blog that day about it but if not the next day. I also plan to blog more for the new year. I connected this blog to a facebook page that I hope to add pictures of procedures and evaluations. My hope is that one day I will have helped another family that struggled to find answers. So my New Years resolution is to stay positive, blog more and try to appreciate the smaller things in life. What are your New Years resolution? Do you plan to make any this year?

After Christmas Math

Well as much as I tried to get online t post it didn't work. We spent the day redoing Cole's room to fit his new toys. Cole could care less that he had presents under the tree. I pretty much had to force him to sit with me to open gifts. We took no pictures because it took over an hour for a few gifts. My goal with the Christmas gifts was to get him things that were fun that could also help with his therapies. His gifts were puzzles, Mr Potato head accessories, bouncy ball pit, some books and play dough. So yesterday was a day of cleaning his room and going through clothes so we could fit the bouncy house. Cole also got a train set from my sister which came with the table so we had that to put together. After all day and a few stops at the store Cole has his dream room it seems. He actually napped in his room which he hasn't done in awhile and he was in and out playing all day. My hope is to actually get him to sleep in there soon. I figure one step at a time. Now if only I could get the rest of this place clean I could be happy.  Cole has a week off from EI which means that I have a week of trying to work with Cole. I can safely say I did nothing with his therapies yesterday. With all the work I do and the also working with Cole I decide its time to go back to school and possibly get certified or a degree to help other autistic children and their parents. I learned this Christmas that everything I did was more for me and not for Cole. I loved Christmas and wanted Cole to love it too but truthfully he really just wanted to follow his normal day. So I decide next year that I will not work so hard to make tradition but to just enjoy my day with him. I plan to take every holiday this way now. So how many parents tried to make Christmas more for their child(ren) and you were more excited?

Merry Christmas

Its been awhile since I have been on to blog. My new years goal is to actually blog more and to try and slow down a little. It seems that since I can control how much I work i have become a little obsessed with it and have been working a lot more hours. Which is also the reason I haven't blogged. Also a lot has happened since my last blog which is Cole had his MRI, we found a preschool he loves but isn't accepting until Sept. and the holidays are here. I promise I will blog tomorrow on all of the business we have had in our life the last couple of weeks and also how this holiday has gone.
So to anyone and all that read this blog....Merry Christmas and Happy Holidays.

Meltdowns with change

It seems lately Cole has either been testing people to see what he can get away with or we have had major meltdowns. This last week I was kicked out of the EI session because Cole was using me to not have to do his work. I was more then happy to walk away since I know that after the session they will inform me of everything they did. It was hard listening to him cry but I knew he was crying to get his way. Recently I went back to work and the started a second job which is suppose to be per diem. The per diem job has me training so I am putting in 2 or 3 days with them and then working my full time job. I don;t know if things changed to fast for Cole and he is having a hard time adjusting to it or if he is just being a 2 year old. What I do know is last night he had one of his worst  meltdowns. It happened when he woke up and it lasted about 40 mins. I tried everything from making him a milk cup, changing his diaper, giving him a snack and trying to turn on a show he likes. It felt like it was never going to end and when it did i think Cole and myself were drained. I plan to really look into different things that might help with meltdowns along with reducing my schedule at my per diem job until Cole is well adjusted. So my question to everyone is have you dealt with meltdowns? Do you have any suggestions on how to handle the meltdowns or make it pass faster?

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