Monday, March 22, 2010

Update Monday

We had a team meeting today up at the hospital in regards to Trevor. This time Trev's case manager and one of the service providers were able to attend as well.

Last Wednesday we knew Trevor had a meltdown that resulted in being put in the time out room. (This is a locked room with a gated window and padded walls and nothing else inside. There is a window on the door so they can view the child.) What we didn't know is what transpired while in the time out room....Trevor told them as he tried to hit the window that he was going to jump...that he was going to throw his baby sister out the window....that he was going to get a knife and kill his teacher and classmates because they ignore him. This is so heartbreaking to hear. While we are used to hearing things of this nature from him at home, never has he talked about hurting his classmates, nor has he ever mentioned that they ignore him. Obviously this was and is, quite concerning to the Psychiatrist and the staff. While I hate to know he has these outbursts, at the same time I am glad he did so they can see it for themselves.

Apparently, he was also put in the time out room yesterday because of having a meltdown at supper time. Although from my understanding, he calmed down much more easy this time.

The Psychiatrist said Trevor is very much Zen - there is no past or future for Trevor - he's in the here and now. He doesn't have the worries/concerns over past/future that the rest of us does.

They explained that Trevor is very influenced by others and this is something we already knew. Apparently he feeds off of the other children when they end up in a time out....even mimicking the troubling behavior the other child had that landed them in the time-out.

Trevor is also very concrete - again, something we already knew. But for example, he was put on the medication to help with the bed-wetting. Well, when the doctor asked him if he was getting up dry, she meant his diaper, not specifying...he took it to mean is the bed dry...which it was, however, his diaper wasn't. If you don't explain exactly what you mean to Trevor, you might as well forget it.

She went on to say again how much she thinks of Trevor, what a great kid he is, but he is also a very troubled lil guy.

At this point, they still have not gotten the results on the EEG, so she has been unable to take him off his other medications and start him on the mood stabilizer. She did consider that he might have a mood disorder, but as time goes on and she seems more of the behaviors, she is confident that it is not that, but that it is the IED (Intermittent Explosive Disorder). She wants him to have a full pediatric neurology work-up as well as a full genetic work-up, which will help in diagnosing whether or not he has Prader-Willi Syndrome. The downside to this is that we don't have any pediatric neurologists near us, nor a good geneticist, so we will have to travel downstate for this to be done.

She also wants another sleep study done - they said he talks constantly in his sleep and it's usually about food, which is also concerning for her.

We mentioned that we were most likely going to be going downstate for a Pediatric Neurology work-up for Victoria and so she asked if we mind telling her what was going on with Victoria. So I explained what has been happening and without obviously talking to her/examining her, she said it sounds exactly like Petit Mal (also known as Absence Seizures) Seizures. She thinks it would be good for both of them to have the neurological and genetic work up.

After our meeting, we got to visit with Trevor. He had progressed to Step 5, which allows him up to 4 hours of "away" time - meaning we could take him off the floor and do something with him. Unfortunately, our car broke down on Saturday, so we only had our pick up which is two seats, so we couldn't take him anywhere out of the building. So we went down to the cafeteria and bought him some lunch and came back up to his floor to eat. Then we played a few games. Karl and I were talking about how we should get going and he didn't want us to, but then he left the room and came back and asked us if we could leave now. Apparently he was under the impression that he was going to work with one of the therapists and so he wanted us to leave so he could do that.

Well, it wasn't his turn, and when he found that out, he started sobbing and crying hysterically.....they tried to console him but it wasn't happening. He begged us to stay now but we couldn't due to the time - visiting hours were over for us. He screamed and cried. One worker had to hold him down while we walked out the door - all while he is screaming "mommy, don't leave me".....tears pouring from our eyes as we boarded the elevator to leave. Knowing your child is screaming for you and you can't turn around and rescue them and have to walk away while someone else is containing him is gut-wrenching. I got into the truck and just hysterically sobbed - my heart was broken - it's like walking out with a piece of you left behind.

I sat in the truck wondering what have I done to these kids? With the added possibility that there is something going on with Vicky now, I just feel like such a failure. Where did I go wrong? Did I do something wrong when pregnant? Did I do something to cause my babies to have these issues? The idea we are facing the possibility of having two special needs children is overwhelming to be perfectly honest.

Karl and I left and went to grab a sandwich before we headed home. I sat there eating with tears in my eyes - this is all so surreal to me. This stuff doesn't happen to us. This is the stuff I read about in other peoples blogs. This is the stuff I watch on Lifetime Movies. This is the stuff I read about in books or magazines. This isn't us. This isn't me. I know that ultimately as it stands now, our children are healthy, in the sense that neither one is dying of some terminal illness, so I do realize that things could be much worse. I think of little Layla Grace and feel guilty for being upset, but the truth is this is my reality - this is our lives.

Right now it's looking like he won't be home till maybe next week. They don't want to rush sending him home before he is ready and we completely agree with that.

I wish an overabundance of love could heal him and make things all better....unfortunately, this is much bigger than a kiss from mama.....

I just want both my children to be happy and healthy....I know we'll get through this.....I know in the end that we'll come out stronger for it....but right now in the thick of it, it just seems so insurmountable. There are times when it's a challenge but you still are able to somehow sail through...and then there are times like tonight where you grieve once again....where that wound is opened just enough to make your heart bleed just a bit again....where you mourn the loss of what you imagined in your mind. I'd like to think this is all normal. Least, all the books I've read say it's normal.

I don't think I can really sufficiently put into words just how much I love these chidlren heart would truly burst into a million little pieces without them....


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