Thursday, October 30, 2008

FINALLY!

I got the call yesterday - we finally have an appointment to have Trevor's evaluation for Aspergers Syndrome! Finally! I feel like I can breathe a tiny bit of relief knowing that we are finally getting just a bit closer to having some answers. The appointment is going to be Wednesday, November 19th! I hate the fact though, that we have to travel 3 hours (if weather is good) for this and have to leave Victoria for the day, but to have some answers for Trevor will be well worth it.

Today we go to see his regular pediatrician in regards to him hurting himself - make sure he's not got an infection or anything like that.

I guess I hadn't posted about the self injury - so here it is - Trevor has been hurting himself - picking his gums, ears, legs, arms, hands, nose - picking and digging till he bleeds - and then when it does scab over he picks it again to make it bleed, and this just continues over and over. It's been a mess - he's been wiping the blood on his walls, etc. He claims there are bugs biting him and that is why he picks, but we (meaning Karl and I) know there are no bugs on him.

Monday, October 27, 2008

Another long night....

Trevor was up during the night....AGAIN! This is just an ongoing thing with him, despite being on medication to help him sleep - he gets to sleep ok, but he doesn't stay asleep. In turn, what happens is, he's not well-rested, and it affects his behavior even moreso. I am about to pull my hair out!

Between Trevor being up and Victoria still getting up several times a night, I haven't had a decent nights sleep in lord knows how long! Sigh! I long for one good, peaceful 8 hours of uninterrupted sleep. I have forgotten what that is like, you know!

Saturday, October 25, 2008

Job!

How could I forget? I've got some freelance work to do....a job if you will permit me to call it!

My friend and former boss contacted me about doing some design type work for his business - including an employee handbook, and a couple different brochures!

I am so happy - it's been so long since I have done anything work-wise and I love to do this type of stuff and let's face it, some extra cash at this time of the year, isn't a bad thing!

Woohoo!

1 Month to go!!

Yesterday Victoria turned 11 months old - time sure does fly, eh?! I think back to a year ago this time and how miserable I was - between the sciatic pain, the constant heartburn and peeing, the never ending morning sickness, the lovely swelling of my feet and ankles and of course, the contractions - hard to believe what a difference a year makes!

Victoria is like no baby I've ever known - granted I only have had one other child myself, but I've been around quite a few babies, just in our family alone. I've never seen a baby who was such a spitfire. You know how they refer to the "firey Irish temper"....well let's just say she's got it. I have to laugh though, because as I said, I've never seen a baby so young who could/would get so upset and fired up. She defnitely knows what she likes and what she doesn't like ...and when you do cross her, look out, cause she'll try to bite you! LOL! She just has this larger than life personality. I try to imagine what she'll be like in a couple years or so, and it makes my head spin! LOL!!

And poor Trevor - he has no idea what he is in for once she can fully walk - look out lil buddy, cause sis is going to be all over you and your stuff like you don't know! LOL!

We are planning a small, family get together for Victoria next month - Nov 22nd to be exact. I had wanted to do it at our own house, but with dad as sick as he is, I figured it is best to just do it at moms, so that he can be there. I did so much for Trevor's first birthday, but our financial situation is so much different this time around, that it is next to impossible to do what I did then. It really saddens me too! I know she has no clue, but it still bothers me just the same. I hate that some day we'll look back at all these pictures of Trevor's first birthday and all we did, and then hers and see what we didn't do! UGH!

Last year - 10.31.07 -

Vic - yesterday - 10.24.08 -

Oh Trevor!

Lately, Victoria has taken to biting - me especially! At first it started when nursing and now she tries to bite when kissing or when she is mad! So anyways, when she bites, I tell her "no biting - mommy says no bite"....

So this morning I am washing breakfast dishes - (damn this house for not having a dishwasher) and I hear "no bite...mommy says no bite"....and I look into the living room and Trevor is pretending to nurse one of Victoria's dolls and apparently also pretending it was biting her! LOL!! I nearly wet myself laughing! He's got such an imagination!

I had to take a picture...

Monday, October 20, 2008

Fun Times

Saturday afternoon we took the kids to the elementary school playground - unfotunately it was soooo cold, we couldn't stay long because poor Tori was freezing! Trevor was having a blast though! I even held Tori and let her "slide" down the bottom of the slide - needless to say she didn't want to go back into her stroller after that! LOL!!

Some pics of the kiddie's...






And some other misc. pics...



Still waiting!

I called down to Bangor last week - to the Developmental Clinic to see when Trevor would be scheduled for his evaluation. I got a call back on Thursday that they have no idea when he'd be scheduled! The deal is, there is only one doctor apparently that can do the evaluation, and her mother is gravely ill, so she is away, and has been for 2+ weeks, and they have no idea when she will return. On top of that, they only do two evals a week, and they don't want any scheduled for December. Now don't get me wrong, I don't hold anything against anyone for taking care of an ailing parent, as I've been going through all this stuff with dad. But I really think there needs to be more than one doctor available to do this type of evaluation. We've been waiting 5 months now as it is, and in the meantime, we know nothing more than we originally did - it's not fair to us or him to not be able to get him the help he needs. I spent most of Thursday afternoon crying! I am beyond frustrated! I need help! I need support!

Thursday night Trevor had another meltdown - it included hitting me, biting me and then telling me he "hopes you die tonight"....nothing you'd want to hear from your 4.5 yr old child. It rips my heart apart to pieces!

I've called his pediatrician to see if she can refer us a different place for evaluation - at this point I am willing to go down to Portland, heck even Boston!

Wednesday afternoon he goes for allergy testing to see if there are any triggers there that aggravate his condition. He's terrified of needles, so I hope this goes ok. I am going to let him take my IPod, so he can listen to music while they do it - I hope that acts like a distraction!

Friday, October 10, 2008

The Bucket Test

Yep, the bucket test....not the bucket list!

What you ask, is the bucket test?! Well, my friends, the bucket test is this:

Sunday I scrub the kitchen floor - I leave the mop in the bucket sitting there for a bit while the floor dries ...I get busy on other things and addmittedly forget said bucket and mop. Monday comes and its a day from hell - literally - hell - and I tell Karl (the hubby) that I am on the brink of a nervous breakdown and need more help around the house and such. Bucket is still in kitchen, but I figure Karl will be kind enough and smart enough to put it away. Well, here it is Friday, and bucket of dirty water is still in the kitchen. I put the mop away but I left the bucket the whole week to see if he'd finally get the clue....apparently not! Tonight Trevor bumps into the bucket and water splashes out and Karl was standing right there...did he do anything? Nope, he looked down at the floor, seemingly a bit ticked off that his feet were now wet, but continued on doing what he was. I swear if I leave the bucket there, he'll continue to walk past it. I give up! Apparently he thinks he doesn't have to lift a finger around here! Glad I can be not only the wife, but the damn maid as well!

Friday, October 3, 2008

Update on the kids!

Victoria had a WIC appointment on Weds this week - she is now 18lbs 4oz and still 27 inches long - guess her height is at a stalemate! LOL!

Trevor had a follow up on his medication on Tuesday this week - he's doing well - we definitely see improvements - not 100% but probably about 80%. And as I've said before, the wonderful thing is, he's still himself. This medication has not taken away the very essence of Trevor at all. He's so funny - the doctor and I are talking about Aspergers and he says, "I don't like ass burgers, I like regular hamburgers!" We about died laughing! He's so funny! The doctor had me contact the school to see how he is doing and I had really hoped it was going well and that maybe we were dreaming all of this - but after talking to the teacher, we have found out he's very quiet for the most part, doesn't socialize - he plays around other children, but doesn't engage them in play or conversation, he's very detailed and very much into structure and routine. I had really hoped he'd gotten into school and would be making friends and having a blast, but that doesn't seem like it's happening. I guess it's just making this all the more real. My heart hurts for him.

I never imagined I'd be in this position - the mother of a child with special needs - I gave birth to this perfect lil guy and foolishly assumed that because he was healthy at birth, that he would always be, but life has a way of throwing a wrench at you at times, and this is definitely one of those times.

Long time no post....

I've been absent from blogging for the past two weeks - things have been crazy around here to say the least.

Rather than type is all over again - I'll repost what I have posted on the message board I visit -

Monday night (Sept 29th) around 6:30pm I got the call from mom that dad was on his way to the hospital via ambulance. Luckily they are about 2 minutes from the hospital. Anyways, dad was struggling to breathe and as he struggled more, he started panicking and thus making it harder to breathe. My heart sank when the call came - I screamed out - I was home alone with the two kids. I called Karl to come home - I wanted him to be here in case I needed to get to the hospital myself - thankfully I live about 2-3 minutes on the other side of the hospital. Anyways, I talked to my sister about 7:30pm, she said dad was fighting the help - he didn't want the bpap machine mask on - and they were talking of intubating him but he had a DNR, so everything was up in the air. At 8:15pm I got the call telling me that I had 15 minutes to get there and say my goodbyes as they were going to intubate him and they couldn't guarantee he'd ever come out of it. I grabbed my jacket and ran out the door - bawling the whole time. Got there and said goodbye, told him I loved him, bawled some more...after he had a chance to talk to all my other sisters/brother by phone or what have you, they intubated him. Then they took him for a chest xray and up to ICU. It was incredibly hard seeing him that way - he looked like he had aged 20 yrs in just a matter of hours. I left there that night not knowing if I'd ever get to speak to him again or see him alive. (that night when Trevor found out grampy was at the hospital, and I was crying, he came out of his bed, to come rub my back and tell me it would be ok. So a little while later he says to me, "mom, I hope gramppy gets better soon, so your heart isn't broken anymore - he's such an intune and sensitive kid.)

Tuesday he was doing good, so they took him off the tube and he was breathing on his own - he had color back - and looked better than he had in a while. He was joking as well as being his cranky old man self! LOL!

Wednesday morning he had a setback and they almost had to intubate him again - he is so stubborn - and he was fighting their help - so it was either let them do their job, intubate again or sign his DNR and leave him be - well he finally came around and they were able to get him calmed down and his stats where they should be again. But yesterday he looked bad again - he had lost his color - and he was just cranky - not joking or anything.

In addition to the sepsis, he also has pnuemonia and they are also starting treatment for Parkinsons.

At this point, they said it's going to be touch and go - ups/downs - till he goes. If they hadn't of intubated the other night, he wouldn't have lived through the night. He is extremely weak and its taking 2-3 of them to get him in and out of bed - he's not a big guy either.

When I visited today and asked him how he was feeling, he said not very good. They've transfered him out of ICU to a Med/Surg unit and now he's in a double room and he's none too happy about it. Dad is a typical old man - old fashioned, stubborn, private, etc.....its taking everything he's got to let others take care of him so to speak - bathing, helping him to the bathroom, etc.

We don't see how he'll ever be able to come home if he lives that long. If anything, he may go to the nursing home from the hospital. The problem is, all it will take at this point is for him to have another episdoe of where he feels he can't breathe, and that causes him to panic and so he essentially starts hyperventialating (sp?) and that is what sent him spiraling the other night and needing the tube.

He is by no means out of the woods....its killing me to see him in there - he just seems so vulenrable now - and he looks like he's aged 20 yrs now - I am exhausted - mentally/emotionally and physically - I haven't slept in I don't know how long - I am running on empty and on top of that I've been sick too....

At this point, I just don't want him to suffer - as much as I'd like to see him come home, I think that would really kill him. I just want whatever time he has left to be peaceful.

The ICU wouldn't let kids up - so Trev didn't get to see him till today. He was very quiet and didn't say much. I think he was just taking it all in!

(Oct 2, 2008)

My dad is in the nursing home now - for skilled nursing care - however, I've yet to see what is specifically being done to help him - and I don't mean that as a slight to the nurses or staff, but more as I just have yet to see/hear that he's getting any of the therapy needed to get strong, and I am not sure what the reason is. I went to see him yesterday, and he wasn't looking so good - he isn't eating - he can't even stand long enough to use the bathroom, so he sits with a urinal and a newspaper to cover his lap...when he did use the restroom there was what looked like blood on the floor, so they are trying to get him to give a sample so they can see what is going on.