Wednesday, March 31, 2010

Vicky & the EEG

Tomorrow is Victoria's EEG - her sleep deprived EEG I might say. I got the instructions last week in the mail:

Keep her up three hours past her bedtime
Get her up no later than 5am
Do not let her sleep at all before the test
No caffeine

Today the office called to remind me of the appointment and to go over the instructions. They explained that the first hour will just be setting up the test. Ouch. An hour to set up a test on a tired 2 yr old. I am already sweating just thinking about it. The second hour is the test itself - and they hope that she will sleep. I asked, do you give her something to relax her? calm her down? help her sleep? No. Oh vey! This isn't going to go well.

Take one tired toddler who has been up till 10pm, then is up at 5am, bring her into an unfamiliar office at the hospital, take an hour to hook her up to all the electrodes and then expect her to go to sleep under those conditions? I have horrible visions of how this is going to turn out tomorrow.






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Tuesday, March 30, 2010

Trevor Update

We had another team meeting today up at the hospital. The psychiatrist who was there left - she was just filling in, which is a shame, as we really loved her. So today we met her (temporary) replacement - an older man from Florida - poor man said he's freezing up here - no doubt! LOL!

He is on the same track as the previous doctor, so no real changes. He's going to be doing some labs to see if the new medication is at a therapeutic level and if not, adjust that. He's also increased his Adderall, because Trevor continues to be all over the place literally. It's hard to find something that will hold Trev's attention.

He does agree that Trevor needs a full pediatric neurology work up - they are working on getting that set up, so that once he's out of the hospital we can do that. That will entail a trip downstate and possibly an inpatient stay, as some of the tests are 24 hours long.

This doctor also mentioned how charming Trevor is and how it's like talking to a little adult. The social worker told us that Trevor has told them on numerous occasions that we are the best parents ever. It's definitely nice to hear that he feels that way.

That's really all the update there is - as it stands right now, he will not be home this week. We have another meeting set up for next Monday.

On Monday, another doctor will be coming on board - I am not sure now if this one will be the permanent doctor or just another fill in at this point.

We spent some time with Trevor after the meeting....sat with him while he ate lunch and then we played a game of Yahtzee - Karl won. For someone who hates games of that nature, he managed to win - must be nice! LOL!

He got teary when we left...but so did I. It's hard to walk away ...I just want to scoop him up and take him home.

I wish I had more to update at this point....I have to keep reminding myself we did the right thing....he's at a safe place getting the help he needs and as much as it hurts having him gone right now, the homecoming will be so worth it.

Karl and I are both disappointed that he won't be home for Easter - not that Easter is a huge holiday in terms of celebration but of course the Easter Bunny visit and all that fun stuff.

On another note, I finally got my book in the mail - the one I mentioned the other day here on the blog - written by Shonda Schilling. So much of it rings true - right down to the feelings of guilt - to the people making you feel like a bad parent. It's all so familiar. In a strange way it's comforting to know there are others who have walked in our shoes. I have read about half of it today alone and am hoping maybe to finish it up tonight.



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Monday, March 29, 2010

And here is the picture to prove it...

....oh the silliness of the Greast Easter Bunny Fiasco! LOL!!

Don't mind my face - I was in the middle of talking, wihch is why my lips are all distorted! LOL!




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Sunday, March 28, 2010

The Great Easter Bunny Experience of 2010

I've hemmed and hawed the past few days trying to decide whether or not to take Victoria to see the Easter Bunny. Part of me felt bad doing it while Trevor wasn't able to be here to go along with us. He had a good time last year having his picture taken with the Bunny....actually they both did.

So today I went to the mall in an attempt to find an Easter Dress on sale for Victoria. Sears had nothing left in her size at all...so off to Jc Penneys we went....they had many and I feel right in love with one but didn't want to spend $20 on a dress just for Easter - I know technically she'll wear it more than just Easter, but it's just the idea. So I settled on one that ended up being $10 after tax. Not as fancy as I had imagined, but it would do.

So spur of the moment, I decide to do the picture with the Easter Bunny. Vicky was beyond excited. Oh she was waving at him and bubbling over with happy! He'd wave at her and she's wave back....he'd peak around a corner at her and she'd squeal with delight that he was playing "peekaboo" with her. And finally they called her up to get her picture taken.....and as we approached the Easter Bunny, I felt some resistance on my hand....suddenly Vicky was no longer filled with excitement....that had been replaced by sheer terror! She was freaking out! Poor thing practically jumped up into my arms. She didn't want to sit on his lap - she didn't want to sit on his knee - she didn't want to sit next to him - nothing. In the end they suggested I...yes....I ...sit down next to the Easter Bunny and hold her and do a picture that way. Even that way, Vicky was still very angry and scared about the whole thing. I couldn't believe that this was the same child who just moments before was on cloud 9 because of the Easter Bunny.

So we paid $3.00 and got a rather ridiculous picture of the three of us! LOL!! Will have to upload it and post it later.

She's had no problem in the past with Easter Bunny or Santa ....funny that now she should start getting scared.


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Thursday, March 25, 2010

Can't sleep.....

I can't sleep tonight....let me correct that....I can't sleep this morning. It is after-all 12:28am.

I miss Trevor.

I miss his giggles.

I miss his voice.

I miss his hugs and kisses.

I miss the smell of his shampoo/soap after he's had a bath.

I miss his silly antics.

I miss his smiling face walking in the door after school.

I miss his "goodnights".

I miss his crawling into bed with us early in the morning to be silly.

I miss watching him play with Victoria.

I miss holding his hand when we are out together.

I miss the way he'd get upset when I'd try to use my finger and some saliva to wipe off some "smutz" as I like to call it, off his face. (Yeah, I am one of those moms! LOL!)

I miss hearing him say, "I love you".

I miss seeing his shoes all over the place, ready to be tripped over at any moment.

I miss watching him dance around the living room to Lady Gaga. (yes, I am one of those moms....again)

I miss everything about him.

Hell, I miss his laundry.

Today made two weeks since he's been in the hospital. When you combine this with the two weeks he was gone last month, that's a whole month - and we're only just about 4 months into the year. A whole month he's been away from me. Prior to last month he hadn't so much as spent a night away from home. And now here he's been sleeping somewhere else for a month.

For a month, someone else has gotten to enjoy that amazing smile....those killer blue eyes....that charming delightful little boy.

My heart is hurting so much right now....I miss him to my very core.

I called tonight to talk to him, only to find out he was in another time-out and I had to call back later. So when I called back to talk to him, he barely said two words to me. He mumbled a bit and then asked if he could get off the phone. Victoria was crying because she wanted to talk to him, but he didn't want to talk to her tonight. So I said my "I love you's" and we hung up. I was devastated. He didn't want to talk to me.

We called back about an hour and half later, and he was in a better mood. He even asked to talk to Victoria this time, but she was already in bed asleep. He told me he had 3 time-outs for the day.

This is just the hardest thing ever....I want my baby home....I miss him so damn much......



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Lupron and Micronor and bears....oh my! LOL!

After going to see the Dr. about my Endometriosis a week ago and her giving me the exact same advice that the first OB/GYN did, I have decided to go ahead and start the treatment of Lupron. This will be a once a month injection which will trick my body into thinking I am in menopause. And then to combat the side effects that come along with menopause, I am starting Micronor. I'll do this for 6 months. This is the maximum amount of time they will allow on Lupron because it affects bone density. After the course of the 6 months, the doctor is recommending I get the Mirena IUD. I am still up in the air about the IUD. But I figure I have 6 months to decide what to do about that. We are pretty sure we are done having children (sigh...that is a whole other post), so maybe by the time the 6 months is up, I will decide to get my tubes tied or have a hysterectomy...I guess only time will tell.


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Brioche

I am not sure exactly why but for some reason I got this idea in my head, that I needed to make Brioche. If you aren't familiar with what Brioche is, you can read about it here. I was all set to make it two days ago, only to realize that I didn't have the unsalted butter necessary for making it. So after a quick trip to Walmart last night, I got up this morning ready to make my Brioche. Just as I was starting, I got a phone call. 15 minutes later I was able to continue on with my bread making. I am not sure if that will have screwed things up or not, guess time will tell. I was trying to continue mixing it together while I talked. Next time I will ignore the phone! LOL!

So it's all mixed up and in the fridge, where it has to sit overnight and will wait to be baked off tomorrow. I can not wait!

I really wanted to take pictures as I was making it - I love finding recipes that have pictures of the process - helps to see what it "should" look like...but after that phone call, I totally forgot to do that. Bummer!

The recipe I used can be found here at Epicurous.com. I'll have to update tomorrow after I have baked t off and tried it! If you decide to try it, leave me a message and let me know how it turned out!


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Amazon.com: The Best Kind of Different: Our Family's Journey with Asperger's Syndrome (9780061986833): Shonda Schilling, Curt Schilling: Books

I was just able to order this new book by the wife of baseball player, Curt Schilling. Thanks to Swagbucks, I only ended up paying $7.15 for it and with our Amazon Prime membership got free two day shipping, so I'll have it on Saturday! Woot!

Amazon.com: The Best Kind of Different: Our Family's Journey with Asperger's Syndrome (9780061986833): Shonda Schilling, Curt Schilling: Books

On a side note, if you haven't signed up for Swagbucks yet, you must! It's a search engine, simliar to Google, only you earn "Swagbucks" and you can use those "Swagbucks" to buy things. Since I've joined I've had $100 worth of Amazon Gift Cards! And all for just doing my normal web searches!

Use this link for the referral when you sign up: www.swagbucks.com/refer/ErinShannon

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Wednesday, March 24, 2010

Crazy sleep and time-outs!

Yesterday morning Victoria was in bed sleeping with us - suddenly she woke me up with her screaming. At first I couldn't make out what she was saying, but then realized she was screaming, "I want my ice cream". When I sat up to look at her and try to calm her down, I saw her eyes weren't even open...when I tried to calm her down she didn't respond - if anything, she just got more irate with me. She kicked, screamed, slapped, thrashed about. After what seemed like 5 minutes, she was quiet for a moment and then suddenly her eyes were open and she was all loving and didn't mention the ice cream at all, even later in the day. I think she was having some sort of nightmare/dream/night terror. I remember when Trevor used to have night terrors all the time - those were so disturbing - I definitely don't miss that. I am trying to remember what age Trevor was when he had them and I am thinking Vicky is around the same age. Guess we'll have to wait and see if it ever happens again. Poor lil thing!

Trevor called last night around 5:30pm to talk to me. Before he came on the line, the nurse wanted me to know he had another time-out yesterday. Apparently he wasn't listening and cooperating and got himself a time-out. There was already one child in the time-out room, so they had to put him in this cocoon type of thing and secure it to his bed. It's just sad to think about  - I hate to think that my baby has to be restrained like that. But I know this is the best thing for him - he's in a safe place where they can monitor these outbursts and handle them more appropriately then I can at home unfortunately.

The psychiatrist was saying on Monday how the honeymoon period is over for Trevor - meaning that he's starting to show his true self now - the meltdowns are becoming more frequent - the newness of the situation has worn off and he's being himself. After the call yesterday, I completely agree with this. Seems like he's getting a time-out every day now where those first 5-6 days there, he was good as gold. I am hoping by them being able to see these, they can adjust his medication accordingly and give him something that will help along with new coping skills.

I did talk with him and he sounded good - he even told me he had a time-out. He wanted to know when he could come home and I could hear them tell him it would depend on his behavior. He needs to know that his behavior ultimately affects when he can come home.

We do have another team meeting scheduled for Tuesday of next week unless he comes home before then - but as it stands right now, the chance he'd be home this week is extremely slim.


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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 ....my heart would truly burst into a million little pieces without them....


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Sunday, March 21, 2010

Squeamish!

I am squeamish!

When it comes to foods, I admit, I get a bit squeamish. All it takes is one bad meal that leaves me feeling sick or running to the bathroom....one stray hair in my salad.....one unidentifiable object in my rice...and I am done for.

I've had a string of bad luck at restaurants during my adult life.

Let's see, there was the time at Pizzera Uno when I found not just one hair, but what looked like a glob of hair from a hair brush in my pizza pie. Yeah, I ordered a pizza pie, not hair pie! Yuck! We never went back there again.

Last year for my birthday it was the salad that had the dark green slimy lettuce leaves - drenched in a river of dressing. It looked like something that had been plated the day before and never used.

Of course, there have been countless times where my food has been overcooked to the point that it's turned color - nothing says "yum" quite like an overcooked black baked potato does - and I don't mean the skin was black - I mean when I cut into it, it was a lovely shade of black/grey and cold as can be. Or the times when it's undercooked and still practically mooing at my seat. All sorts of crazy things like that.

Last month or so we ordered from our favorite Chinese place and the beef teriyaki tasted off to me - the inside seemed a bit too red if you asked me and it just had this "off" taste. I ended up sick that night - not sure if I just made myself sick thinking about it or if I was legitimately sick, either way no one else was affected, just me.

We got Chinese again last night from same place ....tasted great...stayed away from the teriyaki beef this time though, just to be safe. Tonight I decided to heat up the leftover fried rice and several bites into it I come across one of those hard unidentifiable objects. Needless to say it all went in the trash. I am sitting here still squeamish - my stomach doing flips and feeling nauseous. It's ruined it for me. I can't go back there for a loooooong time.


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Thursday, March 18, 2010

Victoria update!

Victoria has been having some issues, so I took her to the doctor today. First off, Victoria's tonsils are "kissing" - we've known since the fall that they need to come out. Unfortunately, there is only one doctor in our area who will do the surgery, but he won't do it on Vic because of her size and age. He has referred us to a doctor downstate, but with all that has been going on with Trev, we just haven't had a chance to go. Of course, as time goes on, the bigger they get, and like I said, they are now "kissing:.

So last Friday she had this episode in the car where she just blanked out, for lack of a better term. She had been eating and suddenly just stopped, didn't move a muscle, her eyes didn't move, she was just starring straight ahead and wouldn't respond to me yelling her name. After about 5 minutes, she went to sleep. I was totally freaked out. It was like this hollow empty shell with nothing inside. She had another very similar episode here at home earlier this week.

In addition to that, she complains her stomach hurts every time we sit down for a meal, she hasn't been drinking as much as she normally does, and her sleep has been all messed up.

In the end I found out she's got Strep Throat, so she is on antibiotics for that. And then the doctor has put her on Prednisone to see if we can't shrink her tonsils a lil till we can get downstate to meet with the surgeon. The doctor feels that she doesn't want to eat/drink just because of her tonsils bothering her so much.

And then because of the two episodes of her not responding and "spacing out", she is sending her to have a sleep-deprived EEG on April 1st.

There is never a dull moment here to say the least!

And on another note, at 26 months old, she is 26lbs and 34.5 inches tall.




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St.Pattys Day

St.Patrick's Day was always a day full of celebration in our house. As a kid I remember my dad putting green food coloring in the toilet tank so the water would be green when  you flushed! LOL!! I remember my mom getting green bagels from this incredibly awesome bagel place on I believe it was 93rd Street and 2nd or 3rd ave in Brooklyn. I'd take them to school to share with the class. I remember mom  coloring green shamrocks with marker on my cheeks and hands to go to school. I can still hear the sounds of the Irish LP's playing - "Oh Danny Boy" is still a favorite to this day. I remember many years dad having mom hang up green Christmas lights. And there were shamrocks everywhere around the house. It was such a fun time!

While I have yet to decorate the house, the kids are still too young to really appreciate and enjoy the decorations, I do continue the tradition of making the Irish Soda Bread and the Corned Beef and Cabbage Supper. It just wouldn't be St.Patty's Day without it!



There is it in all it's delicious glory - Irish Soda Bread.

It's a must to slice off a piece as soon as it comes out of the oven and slather it with Irish butter.

Although, it's also a must that the next morning you toast it and slather it with more of said Irish butter.

There is just something about Irish Soda Bread that is comforting to me.

Now on to the Corned Beef & Cabbage.

Because corned beef tends to shrink when cooking, I always do two of them for us. Not to mention, it's nice to have some leftovers in the days after St.Patty's. I use what is called Flat Cut and Point Cut. The flat cut is usually much leaner and the point cut is a more fatty cut. The reason I do one of each is because you need some of that fat for the flavor.

This is the flat cut:


This is the point cut:



This year I used a big electric roaster to cook mine. Put the two corned beef in roaster, add water - not to totally cover it either - and then add both seasoning packets from the corned beef. I cooked it on about 325 degrees for 5 or so hours. About 30 minutes before it was done, I added in small red potatoes cut in half, baby carrots and one head of cabbage, quartered, and a small onion.

To say it was heavenly, is an understatement. It was divine. It was something that only dreams are made of! LOL!! It's a favorite meal for me.

Now I should note if you overcook the cabbage it can become bitter and almost mushy. Best to add that last thing so it will keep it's good flavor.

Can I admit I am already looking forward to next St.Patty's Day just for the food alone? LOL!!

And St.Patty's wouldn't be complete without a picture of my lil Irish Lass -


My only wish I had was that Trevor could have been home for it as well. Maybe, I'll do it again when he comes home! :-)


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My steal of a deal!

Sometimes you just never know what you are going to find! I was at the dollar store a couple weeks back - can't remember for the life of me what I had gone in for - but I came across these wall hangings that I just fell in love with. At $6.00 a piece, they were a steal! I ended up buying three to hang on the stairwell going up to the second floor. They have awesome quotes on them. I was back a week or so ago and found three more. So for $36.00 I have these 6 different hangings along the stairs.

Here are the last three I bought:





I love a good deal!


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Wednesday, March 17, 2010

Trevor update!

On Monday morning we went up to the hospital to have a meeting with the social worker, child psychiatrist and Trevor's case manager. In the end, his case manager had a family emergency, so it was just Karl and I and the two others.

We talked about what has been going on at home - Trevor's meltdowns/tantrums - his running off - his eating issues. They too assured me that it is completely normal for AS kids (and yes even "normal" kids) to save their worst behavior for at home. What I wouldn't give to be able to nail this home to some folks - they still continue to think that it's abnormal that he doesn't misbehave anywhere else. Yes, I want the behaviors to stop at home, but I am more than grateful that he doesn't do it elsewhere. He's a really good kid all in all!

So let's see ...first off...he's been officially diagnosed as obese. His weight has been increasing leaps and bounds - just in the past month he's put on a few pounds. There was one medication he was on - Abilify - that the Dr. felt wasn't helping him any, but was making his appetite insatiable. She said he is starving all the time - constantly wanting to eat. Of course, we knew this. We just didn't know which medication was the culprit. So she's taken him off the Abilify and we hope to see a decrease in his appetite. If we can get that under control, he should be able to shed some of that excess weight as busy as he is. There is also something else she brought up in terms of his weight and that is Prader-Willi Syndrome. I wasn't too familiar with it, and I mistakenly thought that because he wasn't not mentally handicapped that he couldn't have it, but after reading, I've discovered that much like Aspergers, it's a spectrum disorder, meaning that not every child will have every symptom - it will vary. So this is something she is considering at the moment. She was going to talk to Trevor's pediatrician and they might do a work up for this.

Secondly, she did put him on DDVAP for the bed-wetting. He's been on the lowest dose since the weekend, and has not had one accident thus far. He was quite happy to tell us when he saw us Monday that he was not wetting himself at night anymore. I think this is going to be such an amazing thing for him. While he won't understand, I think this is going to raise his self confidence in many ways.

Thirdly, he was being scheduled for the sleep-deprived EEG to see if there has been any seizure type activity. She was keeping him on all his other medications till he had the test, as she wanted to make him most vulnerable for this type of activity, this way we'd know. If she took him off before the test then it could skew the results. In the end, he had that test this morning. Unfortunately, it can take up to a week to get the results, so we won't know anything for a while yet.

I guess the EEG will also give her a better idea about him having Intermittent Explosive Disorder. There is also a possibility that he will have an MRI.

Lastly, once the EEG is done, the Dr. was going to put him on a mood stabilizer. I can't think of the name of the ones she mentioned - well I take that back, she mentioned Depakote, but that is known for increasing appetite and weight gain, and that is not something she wants to have happen where he's already battling a weight issue. So, she'll take him off the other medications he is on and just put him on the mood stabilizer. I think this is a step in the right direction completely.

On Monday, the speculation was that he'd be there till the end of the week or beginning of next week. But when I called today to see how the EEG went, the nurse seemed to think he will be there till sometime next week, seeing as how it can take up to a week to get results on the EEG. We have another team meeting scheduled for this coming Monday.

He had a rough day today - he was woke up at 3:30am in preparation for the EEG this morning - yeah, that whole sleep-deprived thing! So he was extremely tired and non-compliant at one point, so they said he was put in the time-out room. When I talked to him, he was so sad - crying over what had happened. Here is hoping that tomorrow is a better day for him.

Right now I just am on pins and needles till we get some results. To have all this hanging in the air is hard, but like I said, I feel like we are on the right path with this now.

It's definitely been strange not to have him home again  - tomorrow will make a week that he's been gone again. It's eerily quiet around here at times. And it's not just affecting Karl and I, but also Victoria. When I talked to Trevor today, I asked if he wanted to talk to Victoria, and he said in between tears, "no". Well, she was heartbroken and started bawling - she misses him so much. He's her buddy - her playmate. So he heard her crying and said he'd talk to her, and she was so happy to hear him. She told him in between her own sobs, that she loved him and that he is in her heart. Talk about pulling at the heart strings.

I am so blessed to be their mommy - I cherish these gifts I've been given.



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I've decided....

I've decided to reopen my blog - I've done some thinking about it the last few days. I closed it off because I was getting a lot of negativity from some "friends" and I didn't want them in my life, but then a few days ago I had this thought. If I open it back up and someone who is searching for Aspergers information, may stumble upon it and maybe, just maybe reading our story will help someone else out. Aspergers is an Autism Spectrum Disorder - it's called spectrum for a reason - not all kids will be the same - some will never experience what Trevor has and others will be far worse then even Trevor. It doesn't mean that any parent is doing a bad job. It doesn't mean just because your child hasn't experienced it, that it doesn't happen. I am just one mom out of millions, sharing our lives, sharing our story and maybe like I said, it will resonate with one person and help one person out, and if that is the case, then it will be so worthwhile.

I do want to clear the air on a few things that were said:

1. I do not love Trevor. This couldn't be farther from the truth. Anyone that truly knows me will know just how much I love Trevor. He was our long awaited gift from above. Yes, I struggle being the mom of a special needs child, but that doesn't mean I don't love him.
2. I am upset Trevor has a penis. Apparently, it was felt that I was bothered that Trevor is a boy. Again, couldn't be further from the truth. Yes, when I initially found out I was pregnant back in 2003, I had wanted a girl. I come from a big family with mostly girls and I knew girls. I was scared that I wouldn't know what to do with a boy - I mean, how would I clean his penis and all that stuff? LOL!! But by about 12 weeks, I just knew in my heart of  hearts that he was indeed a boy and I was at much peace with it. When I had my big ultrasound it was just a confirmation of what I already knew as his mama!
3. I am not a professional victim. I have not and will never be a professional victim. Just because I don't handle things the way some would like me to, doesn't make me a victim. We all handle things the way we know how.
4. I am negative all the time. I am most definitely not negative all the time. Even when I am feeling down, I still manage to put on a smile and try to appear happy if nothing else. I mistakenly thought that I could share my downs as well as the ups with my friends, but apparently the friends didn't want to hear/read my downs, only my ups. That isn't who I am. This blog and my FB are my place to vent - to get my frustrations out.
5. I didn't post pictures of Trevor. This is so grossly incorrect it's not even funny. I post just as many of Trevor as I do of Victoria. The difference between the two is that Vicky is at an age, where she lets me take more pictures of her. Trevor is at an age, where taking pictures isn't fun anymore. Some days I catch him on a good day and he'll get goofy and pose for me and let me take picture after picture. But other days, he refuses and I won't push the issue.
6. I use people. I do not use people. It's not as though I am out trying to collect money or something from people. I am befuddled how anyone could think that.

There was more but those were the ones that really stood out in my mind.

I love my kids to the moon and back. They are my whole world. I do everything in my power to provide for them, take care of them, get them (namely Trevor) the help that is needed. All anyone has to do is look at their pictures - you will see two incredibly happy, well taken care of and loved children. We may not have the best of everything, but the one thing we are not lacking is an abundance of love.



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Saturday, March 13, 2010

Feeling hopeful!!!

Today I am feeling hopeful - something I haven't been able to say with such certainty (and actually believing it) in a long time.

For those not in the know, we took Trevor to a hospital north of us to be evaluated through the ER - which in turn led him to be admitted to the Children's Psychiatric Unit. It was a heartbreaking decision yet again, but it was something we knew that had to be done. We arrived up there around noon and were taken to an exam room fairly quickly but it wasn't till 6pm that we were told they were going to admit him. It was a long, emotional day once again. And when the news came that he was being admitted, I fully broke down bawling. I want so much to help Trevor, but knowing he was being admitted was crushing just the same.

We were taken to the Children's Psych. Unit - it's a locked down unit - so you must be buzzed in and out. We were let in and the first thing they do, is run a metal detector over Trevor. Let me tell you, watching that being done to your 6 yr old is hard - you understand why it's being done - but it's so hard to see. Then they took his shoes - as the children aren't allowed shoes - less opt to try to "break free" so to speak when you don't have shoes on. Then they ordered him some supper while Karl and I went to fill out paperwork. By the time we were done with that, he was happily watching a movie with one of the counselors and another little boy who is a patient.

They showed us around the floor - they can house up to 7 patients at one time. Right now there are three of them including Trevor, so a small group, which is a plus I think. They have a classroom complete with computer, etc, They are required to do 2 hours of school work per day, so Trevor is not missing any school in that sense. Trevor's room has a bed and desk/chair and he has his own bathroom with toilet and sink. There is also a padded room for time-outs if it comes down to that. They also explained other tools they use - and when I say "tools" I don't mean like screwdrivers or anything of that nature, but more like weighted blankets, cocoon wraps, etc. So far, Trevor hasn't done anything that would require them to use any of those options.

It was hard to leave him - instead of being like 20 minutes away, this time he's 1.5 hours away. But once again, we knew we had done what was best.

Yesterday we went up to visit him and bring him some clothes and his lovies - we spent a couple hours with him - got to sit with him while he ate supper and then we played Pictionary. (I am on a mission now to find him Pictionary Junior because he loved that so much, but I think the Junior version would be better suited. I unfortunately can't find it at Walmart, go figure!) It was a great visit!

They told us that despite his issues, he's incredibly well mannered, smart and funny and that it is a reflection of our parenting. Talk about making us feel great - it's always wonderful to hear this - so often as parents of a special needs child, we question ourselves - wondering where we went wrong.

So on to the hopeful part....

Today the Psychiatrist called to touch base with us. She said she wants to steal Trevor cause he's so awesome! LOL!! I can't help but agree with her - he is pretty darn awesome!!! :-)

Anyways, for starters she wants to take him off of the Abilify - she said all it's doing is packing on the weight. He's starving all the time thanks to it. I agreed completely. She also said he's got more fat on his neck then she'd like to see, and so she wants to have his thyroid looked into just to make sure everything is OK. Good - off to a good start.

She then went on to say that she is putting him on a medication, (with our permission) to help the bed-wetting. She was surprised no one had mentioned it sooner. She said she told him and he was all happy and said, "what are we waiting for?" lol! That's my guy! LOL!!

She wants to get him off all his other meds (Adderall, Prozac, and Trazodone) - but first she wants to do a sleep deprived EEG to see about any type of seizure activity. Once that is done, she then wants him off all these meds. Her concern is that sometimes these meds he's currently on can bring on seizure type of activity - she wants to see if that is the case. But also because she feels he has Intermittent Explosive Disorder along side the Aspergers Syndrome. If he has IED, this would explain the rage/violent episodes. Once we see where he's at, they can start a new medication, where he can be safely monitored!

Finally I feel like we are getting somewhere - finally someone is listening to us and giving us hope. I have a smile on my face tonight- a genuine, honest-to-goodness smile. I am so happy right now.

Granted, this means there is a chance he could be in there a couple weeks or more while they work out the medications, but I can handle that knowing he's finally getting the help he needs. Yes, I want him home ...but more that that, I want him to feel better and if it means we have to wait a lil longer while he stays there, then I will deal and we'll get through this.

Monday morning we go up for a group meeting and will be able to further discuss everything. I am really looking forward to this now!


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Wednesday, March 10, 2010

Really hits home!

I am reading this book...ok, truth is I am reading three books right now, and all of them are about Autism/Aspergers Syndrome. But this one book in particular is just hitting home so much for me. It's called, "The Asperger Parent - How to Raise a Child with Asperger Syndrome and Maintain Your Sense of Humor" by Jeffrey Cohen.




So there I am today reading today and this totally hits me:



"You aren't a failure because you can't cope with every situation, or even because you can't cope with any situation at the end of a long day."



"It's so challenging," says Dr.Baker. "You can't fall into the trap of overgeneralizing that you're a bad parent because of one or two incidences or worse yet, that you're a bad person and an incompetent person. A lot of losing your temper comes from feeling powerless and incompetent. .....It' isn't about you being a bad parent; it is the normal course."



Oh how I needed to hear this, or in this case, read this. I've been feeling like a bad parent and incompetent for so long now, reading that this is normal is refreshing and validating! Reading that not always being able to cope with every situation or any situation is normal. Wow! This is so powerful!

Several weeks ago there was an incident where several of my "friends" were saying things about me and my parenting....I wish I could have had this then ....to show them this is normal....to show them I am not the bad parent they made me out to be. Until you've walked a mile in someone elses shoes, you can't even begin to imagine what it is like. And even if you do have a child who has the same diagnosis, there is no guarantee our children will have experienced the same things.

I would highly recommend this book to anyone who has a child with Aspergers.

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Tuesday, March 9, 2010

Ugly People

Do you notice the ugly people around you? No, I don't mean ugly in terms of physical appearance. I am speaking of people who never smile, never wave, never seem to be happy, etc. Do you notice these people? They are all around us!

I notice them a lot when shopping in Wal-Mart. I don't know if Wal-Mart just brings out the worst in people or what, but quite often I am taken back by the "ugliness" that seems to resonate from that place.

Between the customers and the employees, there are always a bunch that I see that no matter how big you smile at them, no matter how polite you are to them, they just don't seem to respond in kind.

Even in my darkest hour - my most stressed moment - I put on a smile when in public - whether it's in reaction to the little one near us who is cute as a button or the older person alone who just needs that smile to pick them up. It so warms my heart when I see someone light up with a big smile when they see the kids. Honestly, it fills me with pride that others are smiling at my children - that others find them smile-worthy.

But I do have to stop and wonder about those "Debbie Downers"....are they ever happy? do they not realize the impression they give? That smile could be the difference between a good day and a bad day for a person.

I know that I struggle with staying positive in recent months with all that is going on with Trevor and lord knows I use this blog really to get a lot of those feelings out but like I said when in public, I try to put my "best face" forward.

It's kinda sad to see so many people who are "ugly".



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Playing with the Angels

Little Layla Grace passed away early this morning - she's now playing with the angels - no longer suffering!!! My heart goes out to her family at this time - especially her sisters who are going to take this extremely hard. I have admitted that I don't understand why children have to suffer with these things but I'd like to believe that she is in a better place, healed and perfect once again. So young and yet she touched so many people - that in itself is a miracle!

Rest in peace sweet Layla Grace.


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Sunday, March 7, 2010

Glimpse into Trev's world!

I am just a blog hog tonight! LOL!!

On to something of a more serious nature, Karl was laying with Trevor last night in bed. He wanted his daddy as he went to sleep. So they were talking and Trevor said sometimes he wants to do something but his brain won't let him.

You know I often wonder what it's like to be inside his brain. And I've often said I'd give anything to be able to see how he thinks/feels for even just 5 minutes. It's not very often we get a glimpse into Trev's world. The only other he's mentioned about it, was when he said his brain confuses him.

I get so frustrated when he has these meltdowns/tantrums. And I just have to keep reminding myself that he doesn't mean the things he says...that his brain doesn't work like yours and mine. I have to wonder how would I react to the world around me if my brain worked differently. Whose to say I wouldn't have tantrums too? Heck, even now as a "normal" adult, there are times that I just want to throw a tantrum too.

Trevor really is a special kid with so much to offer the world. It hurts to no end that his brain can't function like ours does - that he has to struggle like he does.


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The toothfairy is going to go broke!

Trevor lost a tooth last Sunday. Trevor lost another tooth today.

Here is the deal though - he pulls them out himself. Yes, they are loose but honestly I haven't had a chance yet to really feel them beforehand to see if they are that ready to come out. By the amount of blood, I have to wonder if they were really all that loose when he pulls them. I am starting to question if this has something to do with the Aspergers - not the Aspergers itself necessarily but the anxiety and things of that nature that go along with it. I need to ask the doctor when I speak to her again. My big fear is that he's going to pull out an adult tooth and then be really messed up.




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Regrets?

Do you have regrets? Do you live your life with regrets?

As many of you may know depending on how long you've been reading my blog, my dad passed away last May. I am still very much struggling with that. I'd be lying to say that every day isn't a struggle when it comes to it. My dad was my hero - the sun rose and set with my dad. He was the best father a girl could ask for.

I was out today taking a ride and thinking about dad.

We knew he was sick - we knew the end was just a matter of time - and yet I thought I had time to tell him how I really felt. I thought I had time to express just how much he meant to me. I thought I had time to take pictures of him. I thought I had time, but the reality is, there is never enough time. I had 33 yrs with my dad, and it wasn't enough time. I want more pictures. I want more memories. I want more conversations. But that isn't possible.

Looking back to those last weeks of his life, we'd visit him in the nursing home and several times I brought the camera with me but didn't really take many pictures of him because I knew he didn't like have his picture taken and I didn't want to disturb him. And I assumed we'd have time to do it another day. At that time I wanted to sit down and put pen to paper and tell him how much he meant to me - how he was my hero - how I judge every man against him - and I never did it because I assumed I'd have time to do it.

Life is so precious. Life is entirely too short. Even if we live to a ripe old age, its still isn't long enough for our loved ones.

I had 33 wonderful years to have my dad. I am thankful for each and every one. But I regret not doing the things that I thought there would be time for.

I think of sweet little Layla Grace, the two year old from Texas that is dying from Neuroblastoma. Two years old - Vicky's age. As I said, life is just never long enough.

Not one of us knows what the future holds - we have no idea if when we get up tomorrow if it will be our last time - we don't know if the next time we go to the doctor, if we'll get bad news - we don't know if the next time we get in the car, it will be the last time. I urge you not to live with regrets. Life is short. Make sure to tell your loved ones that you love them - tell them what they mean to you! Don't assume that you'll have tomorrow - tomorrow may not happen. Spend time with your kids - leaves the dishes (this is my own personal vice). Talk with your spouse - that TV show can wait. Call your friends/family - make sure you tell them you love them before you hang up.  Take care of yourself. Live each day to it's fullest!!!


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I am such a loser!!

I am pissed off at myself!!! No, really I am!

You see for several years now, by the time fall rolls around, I tell myself I need to get dieting/exercising, so that the following summer I am more comfortable, etc. I tell myself I have all winter to get working. And you know what? Winter passes, and suddenly spring is on the doorstep and I am still the same lazy, fat person I was back at the beginning of the winter. Gah...I do this every.single.year! I am so mad at myself. I could have easily been down 30-40 lbs by now, but instead I am just starting, which means that I will be nowhere comfortable with myself by the time summer rolls around, so I'll spend another summer trying to hide myself in long sleeve shirts and jeans in the 80-90 degree weather sweating my ass off. How stupid is that? How dumb am I?

Before I found out I was pregnant with Trevor, I had lost 85 lbs ...of course it was by smoking and not eating and stress - not exactly the healthy way to loose weight. And while I still had some to loose even at that point, I was feeling so much better about myself - I had confidence - I didn't try to hide inside my house all the time. I gained 60lbs with Trevor....only lost maybe 15 of those pounds and then got pregnant with Victoria and gained about 30, which I pretty much lost within 4 months of her being born. Then we moved and the stress continued to pile on, and instead of staving myself this time, I ate and ate and sat around, and wallowed, and gained 35lbs. I am at the highest weight I have ever been. I struggle to find clothes that are still somewhat stylish and fit me. I am embarrassed of myself. I am embarrassed for the kids. I am mad at myself for not being a better role model for the kids. I don't want them to grow up thinking that being lazy is acceptable or healthy. I've been deluding myself into thinking it wasn't that bad because my cholesterol and blood sugar, etc, were all great. Well guess what....those numbers are changing and not for the better. No longer can I sit back and pretend that I am healthy despite being so overweight.

I let my weight hold me back from so much - I hate going out in public - I don't want to go out with friends - I don't want to go out to restaurants because I am afraid people are starring at me wondering what that really fat lady is going to eat. I am scared to go to the movies because the seats are tight. I want to be able to take the kids anywhere and run and play and not worry about who is watching me as I am huff and puff and try to catch up with them.

There is this whole other person stuck inside my body - someone who has so many aspirations - so many goals - who is outgoing - funny - caring - and she wants to come out. I need to do this - I need this for me.



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Saturday, March 6, 2010

A bit about me....

Ive been debating posting this - talking about my weight and struggles with my weight is such a hard thing for me to do. It's weird cause anyone who sees me in person, obviously knows I am overweight, so why I struggle to talk about the "elephant in the room" is really kinda confusing!

I started taking Alli last month - guess it's been about 3 weeks now - honestly I can't remember when I first started it. So far I've lost 9lbs. It's a good start I think. But I know it's just the start - I have a *lot* more to loose. Honestly it's kinda overwhelming - I think that is what tends to be my stumbling block - I see these little losses and think about how much I need to loose overall and it's just so damned depressing.

I bought myself a Pilates DVD and a Walk Away the Pounds DVD and they've sat here for two months - I haven't used either one yet. I am determined that I must change that.

I told Karl today I want to get a pair of either the Sketchers shape up sneakers or the Reebok Easy Tones - and I want a new (and much better) stroller for Victoria, so that I can take her out for walks (well Trevor too). I found an All-Terrain stroller that we are going to get maybe next month or so. We've even discussed saving up to get a treadmill since we now have a basement.

So anyways, that is where I am at....you might see me blog more about my journey on the road to weight loss as time goes on!


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Another one of those days....

Yesterday was a rough day here - seems they are becoming much more frequent. I gave Trevor permission to play outside yesterday afternoon provided he didn't leave our porch. Within about 10 minutes, he was gone. I went outside and called his name and finally he appeared up the street. I called for him to come home and he shook his head no. Meanwhile there is another mother standing outside up the street and I hear her yell to her daughters to tell me that my son has been cursing. My heart sank - normally he only does that at home when he's having a tantrum. So the little girls come over and tell me he was cursing and that he also pulled another little girls hair and hat. I was livid. I ended up having to call my 17 yr old niece to come over and give me a hand getting him inside since I couldn't leave Vicky to run after him. She managed to grab him and bring him back home. When I confronted him, he did admit to hitting the girl, but claimed it was because she was trying to hurt him. Honestly at this point I don't know how much I believe from him, but either way, the very fact that he's taking his anger outside the house troubles me. I need to contact his support workers on Monday to see what they have to say about this. As it stands right now, I've told him he can no longer go outside to play alone because he can't be trusted. I know he just wants to be one of the kids so to speak, but at 6 yrs old, I can't have him running off where I can't see where he is and what he is doing. It's just not safe in this day and age. We live in a world full of freaks and weirdos and unfortunately one of the problems is getting Trevor to understand the concept of safety.




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Wednesday, March 3, 2010

What a day!!!

I am just going to come right out and say it, today has been hellish! I can't sugar coat it. I can't find humor in it. My heart hurts for Trevor and for our whole family. This is just who I am. This is how I handle things.

Trevor got home from school today and had his meeting with his support worker. Wait, let me back track for a moment ....the last two mornings, he's gotten up with an attitude and meltdowns from the time his feet hit the floor. I am not sure why the change suddenly when he had been doing better in the mornings, but something changed, and I am not liking it. It's been a battle to get him to shower and get dressed and out the door on time.

So back to today....his support worker left and things went downhill. Trevor may have AS but he's smart, cunning, charming...you get the idea. So when his worker is here, he for the most part does what she asks and is well behaved, save for the outbursts on Friday. The minute they leave and it's like the flip of a switch and he's back in meltdown mode.

I was supposed to have another meeting today @ 1pm for him/me. He wanted to go outside to play but I told him he couldn't because we were expecting someone and he had to be here for this meeting. Well he got angry to say the least. Time went on and the woman never showed - no call or anything. Karl got home late for his lunch and Trevor wanted to leave then to play outside and we told him no, due to his behavior he had lost the privilege. He freaked out - kicking, punching, spitting, yelling, grabbed a plate right out of Karl's hands and threw it across the room and it shattered. We sent him to his room where he proceeded to smash his toy vacuum. All the while Karl is cleaning up the broken glass and I've put Vicky in her booster seat at the table so she doesn't get into the broken glass. Trevor continues to thrash and scream - refusing to listen to anything we've said.

Karl left and now Vicky is crying because of what has transpired - she's stuck watching all of this and it's affecting her too. So while trying to calm her down, he makes a break for the door and in one jump is lucky enough to knock the chain lock loose and it opens and he's gone - no jacket, no hat, no gloves. I message Karl at work to come home because I can't get him inside while Vicky is in the midst of full on crying hysterically. I thought my head was going to explode right then and there. I am sorry, I know people don't like to hear me say this, but I can't handle this behavior - yes I know, that I have been but it's not been without a lot of stress and crying on my end. Karl came home and we finally get him in, and he continues the meltdown for another good 45 minutes till he finally calmed down enough to eat supper. Of course, in that 45 minutes, he bite me, scratched me, threw a wipes travel case in my face, kicked me, punched me in the front teeth. And then basically did the same thing to Karl.

I think what is really hard is, once he's calmed down he's all back to being loving and what not and it's like I am living on this roller coaster. Again, that flip of a switch. It's so draining!

I am going to be perfectly honest - I dread summer when he's not in school for part of the day - how will I keep him occupied - how will I keep him inside - what will I do with him? We are having a meeting tomorrow with all his support services and case manager and this is one of the questions I plan on asking. I can't keep my eyes on him 24/7 - I have another child who requires my time and attention as well. Trying to split my time between the two is proving to be extremely hard.

And I am scared - scared Karl is going to loose his job with as much time as he's had to take off or come home early to deal with Trevor. What will we do then? How will we survive?

I am beyond exhausted tonight - not just physically but mentally....I think tonight will be an early night.



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Monday, March 1, 2010

You say it's your birthday....

It's my birthday too, yeah!

Happy 34th Birthday to me!!!

Despite AF being here and Trevor having a slight meltdown this morning, I am determined that today will be a great day, come hell or high water! :-) Ain't nothing gonna break my stride....nobody gonna slow me down, oh no! :-)

Yeah, I am on a lyrics kick today! LOL!!

Seriously, it's Monday, it's my birthday, it's March which means spring is right around the corner....it's gonna be a good day!!!






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