Tuesday, August 21, 2012

AEEG, VEEG, MRI, OT fight, Birthday

Things have been busy on and off since my last blog. I seem to have taken a break from blogging and just from everything it seemed except Cole. Since my last blog Cole has graduated out of the EI program, had an AEEG, VEEG, MRI, fighting insurance to pay for OT and most important Cole's 3rd birthday. As I look at the list ir doesnt seem like that much but the last few months have been so stressful.

First I would like to say that Cole's MRI has no change once again. We will still have to moniter the cyst and white matter but because there has been no change we will only do an MRI now every year.  My hope is that this is never an issue and we can hopefully only have to do an MRI if Cole is having any effects from the white matter or cyst.

Finishing EI was very sad. It didn't hit me until after his birthday. The last week of EI we had his 3day VEEG and were in the hospital for the begining of the week. By the end of the week he had only one appointment left and unfortunatly Melissa was sick. Had i known that the week before was our last week I might have tried to add more time. I know Cole misses it a lot and his days even though I keep him busy its not the same. EI was such a big part of our life and now its like an empty spot in our life. How many other people feel this way about their EI group? We were so lucky to have such a wonderful supportive group of woman from EI. I would like to thank Lauren (case manager), Noreen (DI), Melissa (DI) and Becky (OT) for all the help and support they gave us since COle was 15months.

As for the EEGs Cole had gone through, I hope I never have to do that again. We started with an AEEG which is a 24hr ambultory EEG. His neurologist wanted to do this so that she can make sure the regression Cole has was not from a seizure. We went through a problem with the hook up since the EEG depeartment thought it would only be a 40 min. EEG. Thankfully i fought long and hard and got him to have it for 24hours. I didn't want to have to repeat the test or have him hooked up while awake. I was able to have him hooked up for this one while he was sedated from his MRI. it worked out so much better.  After getting the results which showed a small discharge we had to go for a 3 day VEEG.  His doctor wanted to find out why Cole had the discharged and make sure we were not having seizures.  It was hard enough spending time wondering if Cole had seizures but then his insurance company messed up and put it in as outpaitant. We spent 4 days fighting to get him in for monday and for the insurance to fix their mistake. It was a long and stressful week. One i can say is finally behind us. As far as the VEEG it was a long 3 days at the hospital. Cole set the alamr off 2 times but thankfully it was only from the way he was pushing on a lead on his head.  I spent the 3 days with Cole while my husband stayed home and cleaned for me. Unfortuantly only one parent is allowed to stay and the hospital is over an hour away. SO the end report was Cole is still to be watched but she believes the discharge was from him pushing on the lead. I took it as good news and we now dont have to follow up until Dec.

Lets move on to the insurance problem that is still ongoing. After Cole started OT and has been going for a couple months we get a call from Children's Specialized Hospital telling us that his insurance no longer covers OT. I was caught off gaurd and was stunned since up to this point Cole's insurance covered almost everything and only problems we had were paper errors.  After a long fight which is still going on i was able to get the Hospital Help program to pay for OT.  The insurance is saying because Cole has Autism that its a chronic condition and that his policy doesnt cover chronic conditions. I am just stunned by this and feel like they are discriminating against children with Autism. Even though Cole has his OT covered i feel its the principal of them covering it that I continue to fight. SO i will try to keep up my blog and let you know the outcome of the fight.

Last topic was the biggest one: Cole's 3rd Birthday. It was wonderful. Not as many people there as the rsvp said was coming but it was nice. We had it at a park were the kids could play and just have fun. We did coldcut platters and salads and ended with cupcakes and rice crisp treats. It was a rough start since I ran lat all day but in the end the party was good and the kids had fun. The best thing about the party was Cole actually played with other kids for a little. He did go off to so his own thing but I was happy just that he had some interaction with other kids. All in all i think his party was a sucess and hope to actually have a smaller one next year for him and at a house that we are leasing with a backyard. The only bad thing about the park was it was not fenced in so i had to elect my sister to keep an eye on Cole while i set up and did stuff like that. I still cant believe that Cole is now 3 years old. The time has pasted so fast and makes me a little said.

I believe that sums up most of what has happened since I last blogged. I know that I didnt blog about the school evaluation but i plan to do that next. We are still in the process with the whole school thing but I would love to let everyone know the process we have been through. I will also update pictures of Cole's party and his EEG.  So what is new with everyone else? Has anyone else gone through the process of any of the above mentioned?

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