August 1, 2009

  • Funny Crap~~~I promise.

    We are finally feeling human around here again.

    Now for the funny crap...

    My mother called me today and gave me a number to call. It only takes a second. Hilarious. I was in a crappy mood until I heard this recording. So all I am asking is for you to call and listen then tell me what you thought. Only cost is the cost of the phone call unless you have a cell.

    so here it is NO live person will answer so call anytime you need a good laugh!!!

    413-497-0025

     

    sorry i put the wrong number up THIS is the right one...im a dumbass!

     

     

    35 days until hubby & I have been smoke free for an ENTIRE YEAR!!!!!!

July 29, 2009

  • 106 and climbing

    That would be the temperature outside at the moment.

    Nina had a blast at the birthday party. The next afternoon we got a call saying that someone had brought a sick kid to the party and that all the kids in their family had already started pooing and spewing. Nina was fine until the next day. The all SHIT broke loose. As if that weren't bad enough the temp hit 105 that day. Then it was time for the barf-o-rama. Poor kid is hardly holding anything down at all. She is staying hydrated. We are doing pedialyte at night. Very slowly...  She is keepin that down. I think it is just to hot to use her formula/pediasure. We are trying some today but slowly and no where near the amount she should be getting.

    Today she is doing better. The heat is not helping and we have no airconditioning. She was still barfing last night.

    Did I mention I am now feeling like crap. I am keeping the fluids in but I have yet to eat. Kind of scared to. I am not wanting to puke. I have been having the poo prob to but for me that is nothing new.. Hubby seems to be unaffected but then he is to damn mean. LOL

    Well I think I am gonna go. Hopefully this crud will pass.

July 25, 2009

  • Home Sweet Home

    Well all news was not as good as originally thought. Looking at the CT scan the doctor thinks her jaw is trying to fuse back up (meaning no movement in her jaw) again. He is hoping that with more then quadrupiling the exercises (from 10 a day to 50) it will hold it at bay. Give him time to come up with a new plan. He is already talkin about the Halo again.. Third time is a charm. She has seemed to be in a better mood. Her attitude is not as frequently annoying. She is gettin a well needed break from us today. Her BFF is having her 10th bday party today so her dad will pick Nina up in about an hour and a half and she won't be home until probably 8pm. This will be the first time hubby and I have had a break in literally over a year from her. I feel bad for feeling happy about the break from her but I know she is glad to get away. Here she is still constantly reminded that she has medical needs that have to be done. There she gets to take a break from all feedings and exercises and be a normal kid having fun! We got up extra early today to get a head start on exercises so she could have most of them done before she leaves.

    I am still averaging about 4 hours of sleep a night. I got to bed at 2am but could fall asleep until this morning at 530 am. I was up before 9am.  To say hubby doesn't do mornings isn't an understatement but its not entirely his fault. He has no meds for his seizures or other medical conditions so he does the best he can but doesn't give me any more rest...but he tries when he is up memory problems and such.

    Well I need to go time for more exercises and a feeding before her shower for the party. Talk to you soon!

July 23, 2009

  • Surgical Update via DSi

    Well we made it safely to Seattle obviously. It wouldn't be much of a surgical update if not now would it.
    Anyway we got to Seattle yesterday for a gtube [feeding tube surgically placed in tummy] check. The appointment went well and we had a doctor that actually listened this time and we got the meds we needed!! In one night the gtube site is looking MUCH better. After the appointment we went to the hotel for what we thought was the night.
    Well you would think I would know better after all this time but I can be a bit dense lol.
    Anywho arrived at Seattle Children's [because yep they changed its name AGAIN] at about 9AM. They took her to the OR by 11AM. By noon my little angel had be demoted back to my lil hellian lol. AKA She is HALO free.
    Dr. E decided she is doing much better and moving better without the HALO so decided not to admit. Which is great but i hauled that heavy ass suitcase all over that damn hospital because she was gonna be admitted. We are back at the hotel because Dr. E wants to see her in clinic tomorrow afternoon. Hopefully we will get out of there in time to get the last train home. I am not holding out much hope for that since we are being fit in and i can't get there until 1PM. So then i have to call transportation and have them process our train tickets home which can delay us longer. Worse case senerio we will be home friday afternoon. But did i mention I am broke as a overused pope walks into a bar joke? Not that that is anything new but if the state screws up i will have to buy my tickets home.

    but anyway important thing is
    1. HALO is off
    2. She is doing much better then anticipated.
    3. She seems to be trying [not just my patence either] to be nicer.
    4. She has been out since 8PM giving me some actual time semi-alone.

    Well that's about it! Will hopefully be home by tomorrow night I am missing home cooked food. Nina and already put in our request for tuna casserole lol. Thanks 2 Holly & fam 4 all the help recently love ya!

July 19, 2009

July 18, 2009

  • I had this really cool post about there only being 6 days left until Nina gets her halo off and Xanga ate it so you are stuck with this one. Sorry bout your luck lol...  But before I do the pics I MUST say:

    6 DAYS till NO HALO!!!!!

    Dr ESTess and Nina

    _Media Card_BlackBerry_pictures_IMG00152-20090718-0024

    HNI_0087

    HNI_0057

    HNI_0056

    HNI_0001 (2)

    The last one she took when she was sad about Buddy. She asked me to post it too.

    IMG00061-20090514-1145

    Hard to believe this was literally LAST year isn't it? 6/2008

    She has changed so much so quickly. I just have to remember that when my patence is at its lowest.

July 13, 2009

  • In 10 days Nina will be halo free. I am hoping like hell the nurses hurry up. Exercises will double if not triple by then and I am already living on less then 5 hrs of sleep a night, which is a lot on account that I have apnea and get up to pee at least twice in that 5 hours. I'm a whiner but I am allowed!

    Nina is currently grounded. Her behaviors are way outta control.

    We had a long talk tonight. Family meeting style.

    She just keeps making choices that she knows not to do.

    We have the week off from the doctor but unfortunately

    Nina bopped her head because she was crawlin under an end table

    while she was pretending she was a puppy. I just told her yesterday to crawling

    under tables and crap or she would get hurt.

    She just doesn't listen. What kid does?

    If things around the halo look any diff tomorrow I may have to call.

    Waiting incase I am just seeing things. She isn't complaining of pain per say so she should be fine tonight.

    Has so far anyway.

    Well 9am comes quick.

    Good Night.

July 10, 2009

July 8, 2009

  • So much to do so little time

    It always feels like that anyway. I have your normal BORING mundane house chores to do. I have to enlist brat child in to do her chores so mine can be completed in a timely manner. I am letting her sleep. I got up at 8:30 this morning. I am up dressed and ready to get on with it. I have vegged a bit online here and there and now back here again. So I am cleaning house today. I have yet to decide whether I will play music or watch episodes of my Scrubs Season 5 i got from netflix between loads etc. May do both. Listen to music while cleaning and then watch my episodes while machines are doing the work part of my work.

    Our fourth sucked. On lots of levels. We totally were given the wrong time. When we called to confirm we either didn't get an answer or got brushed off. We assumed that it would start at normal time at 6pm which is the time it usually starts. We had been asked to bring a few things which we happily did. Only to discover once we got there that the BBQ had taken place at 2pm. No one realized we didn't know. Ok whatever. Still had the 3rd wheel feeling but to be honest I assumed it was me. Hubby and I are fairly shy around larger crowds. We had made Nina wait for dinner at the BBQ. I was annoyed to have funded basically over $60 worth food for someone else to enjoy but lesson learned. Anyway we started to relax and enjoy ourselves and a group of guys who happened to be black came out of no where yelling at some of our party guests about whites on their turf. Well that didn't go over well and since our friends have lived there 10 yrs it obviously wasn't anyones turf. I suspected they were on something. They were looking for a fight. Well 4 on 1 is never a fair fight. They were attacking anyone in their way any age. Immdiately we got Nina out of there. They ended up sending several of our people to the hospital. The cops never bothered even looking for them so no arrests were even made. I personally think it was a planned event. There were more then 20 in their group. They were yanking scooters from little kids to use as weapons. Our hosts were just begging them to move on we just wanted to have a good time. Well they didn't listen. All hell broke loose. It was a racail thing for them. Which makes it very hard mentally for us to not feel like it was a racail thing. Especailly since every violent crime against us has been random (as in we had never met any of them before) and the culprits happened to be black. How do you teach your kid to not be afraid of them when not once but twice they have threatened to take her daddy away from her because he was a white boy. I would apologize for being white if i had any control over that.  Calling 911 in this town is a joke. It literally just rang. It amazed me at how many ppl did not bother calling until someone they knew got hurt. That ended our festivities. And I had to come home and cook.

    We made the best of it came home and I made hotdogs which we then had an outdoor picnic and watched everyone's fireworks go off. Our friends that got hurt will all be fine eventually. The guy that got hurt worse was trying to keep the peace. He didn't even come out fighting he came out saying let's calm down and just enjoy the fourth.

    We decided that we won't be joining anyone else on fourth. We decided we will just do our own thing. No more trying to get out to have a good time. If Nina had gotten hurt I would have had only myself to blame. I also decided I could of wasted the money right here at home and gotten more out of it. I hate to feel that way but I do. I hate that my little girl is now afraid to walk down the street because a black family lives there. I told her that the color of their skin had nothing to do with thier behaviors but she heard as well as we all did. We were attacked becuz we were white. I don't and didn't understand the anger behind their attack. Maybe there was something behind the scenes. I told her that I still have friends of every color that I hold very near and dear. That they are still my friends despite what those idiots did. I tried to tell her that idiots come in every color. I hope she will not be afraid of people because of thier skin color. It is hard when it is such senseless violence like this. It is harder when ppl make comments like this was a good town until they moved in...referring to the black people. I admit this used to be prodominantly a white neighborhood. But over the last 10 years our small community turned into a small town. People tend to want a quieter life which is what our little town has to offer. It doesn't matter the color of our skin we all deserve a peaceful life. But enough about that.

    Nina has yet (wait for it) another (wait for it) trip to ... SEATHELL tomorrow. Yay us! Its only a one day trip where I thought I would be a 3 day trip but was able to get somethings moved around a bit. She gets the lovely halo off  in 15 days!!!! I tease her daily that in 15 days I get to beat her.. I am not sure she is so sure I am teasing though lol. I plan to let her have a sleep over friday night. I know what am I thinking?? Might even let it go all weekend. It's just her and her bff.

    Nina made it to 5th grade! She is in the best teacher's class. He asked for her. Said he was tired of feeling like she being lost in the cracks. Hopefully this will be good for her. May help with behaviors too. Guy teachers always scared me to much to be bad in class lol. We are doing some summer homeschool this summer. Our goal is to work 2-3 hours a day, which includes homework. Thanks to my uhmazing (as my neice would say) sisters!

    Well I guess I should get to work the house won't clean itself. I know I have waited and it just gets worse hehehehe.

    On a sidenote I hope I didn't offend anyone out there. However this is my blog and I have to put some things down that I don't always like. I truly don't believe that our skin color or theirs had anything to do with anything. They were probably just drugged out kids looking for trouble, its not their fault or ours that we all had diff. skin color. At least thats what I told Nina.

July 4, 2009

  • It's a crazy house here!!!!

    3523485936

    Not really but I have felt very busy all of a sudden... Seattle weekly still. Some trips are better then others. Been going by train lately just easier then nina being mean/rude to my friend. My friendship with her is important and she should not have to deal with it. Not when she was driving us out of the kindness of her heart.

    So the appointments have been going well. We only see the doctor for about 20 minutes and spend the other 13 hours of our day traveling but only about 6 hrs actually going to or from our destinations. I joke often about writing a book regarding the waiting process but one day I might get closer and write a poem lol..

    So Nina gets the halo off in 18 days!!!! July 22nd to be exact. I have mixed feelings regarding this. Dr E is saying he thinks she is ready but hubby and i are not so sure she is doing the work well enough to be able to still do it when the device is off. She quite frankly is lazy. I worry constantly that they will remove it and she just won't do it and I won't have a way to do it for her. The device now is on insuch a way that if she refuses to do her jaw exercises then dad or I can do them anyway. When she wants to do them she is all smiles and says it doesn't hurt anymore. She just won't do them because she is lazy and its one of the few things she can rebel against. It is the same thing with doing her feedings AND having her water flushes after them. I feel like a broken record lately from telling her OVER and OVER that she controls the choices she makes and she KNOWS that she must have her full feedings and especially the water more so then normal since its been so hot. I am lucky to get more then 2 cups of water in her a day and its not like she has to taste it she can put it in the g-tube. So every time she refuses to do it we ground her from something. Her feedings are usually the biggest reason she gets grounded lately. Her feedings are not an option. They MUST be done. She usually gets up much earlier then we do then goes back to bed. She has learned over the years that I'm as good as deaf when I am asleep unless she is crying/hurt/sick. So she will sneak up eat everything she isn't supposed to in the fridge/cupboard and then go back to bed. Then when she does get up at 10am or so she will refuse to do her feeding which truly involves popping open two ensure type drinks (only kids version) pouring them into the feeding bag then hanging it on the pole or hooks we have around the house. it then takes about 45 seconds to prime the tubing and plug it in before she can basically do the exact same thing she was. It doesn't tie her down as that was the first excuse she gave. She kept saying she didn't always wanna sit in her room which we understood, so we have a hook next to the dinning table, it can hook under one of our standing lamps next to the sofa, the IV pole is in her room and on wheels so she can move around inside. We even have a little backpack thats set up so she can play outside while eating and no one would even know!!! She just refuses to do them! No clue why. She gets lots of oral snacks and some meals too but we had to stipulate that it MUST be after a feeding. No oatmeal by mouth until after her breakfast feeding. She just can't maintain her weight without the gtube feedings. She has skipped a feeding 2 days this week. It is usually the last one. One was thursday and I was exhausted and forgot to remind her.  The other was the day before because she forgot even though I told her 3 times and she said she will. I was packing for the trip to seattle rerunning my checklists etc. If she doesn't flat out lie. I do fine when I can stay up all night through to the next day she does what she is supposed to and don't get up early in the mornings. In fact sleeps until at leat 10am. I have tried being up extra early and short of bein up at 5am everyday I just can't seem to catch her. So needless to say this mommy is but one person and there are 24 LONG hours in every day.

    WE NEED HELP.. Help is on its way I am assured but by the time they get all set up I may not need the help as much or will have become so overly tired it won't matter anymore. I have decided though to continue with the process. I have a lot on my plate right now and the extra help no matter how significant it may be.

    Hubby has lost medical. We make even on our fixed income to much money by an incredibly stupid $25-$50 for him to qualify. Despite his sezuires and other disorders is not catagorically needy enough to qualify under any other programs. His sezuire med alone is more then $400 a bottle and his stomach med is another $300. His other meds are not so bad but all Rx's have expired now and the doc won't rewrite without an appointment. We won't even touch that one. I have no time to get things seriously looked into which involves fixing my car so i can get to diff appointments. He was recently denied for SSI so I think we are going to have to go the lawyer route if he doesn't just say Eff it and try to find something. I am not sure what we should do and honestly it consumes much of my thinking time which is usually late at night when trying to fall asleep. We need the money that he might be able to bring in from working but finding something he can do safely that he knows how to do that he can get to with no running car at the moment will be the challenge. He used to be a caregiver and the money is good to be honest if he does private home care it can pay more then $10 an hour which isn't bad in our area. But findin a employer to hire him.

    It will all work out. It has to. This is what I keep telling myself anyway.

    I feel like my life is like a bad roller coaster. Very little thrills and not exactly worth the money I spent lol. This is probably why I haven't blogged much. I feel so negative.  I hate being or feeling negative. I think with a little help around maybe I will get to work on the things that make me feel or be negative.

    I think I am ready to get a new furbaby. I really miss buddy. I long for him. I didn't realize that getting him would change our lives so much. Now our lives are back to the glum and always stressed mojo. I want to go about it the right way. We were offered to get buddy's brother and even though every fiber in my being wanted to say yes I decided that it would not be wise after talking with my vet. They said that given the history of buddy it wouldn't be wise. Buddy was an amazingly little guy. I think this time we are going to get a rescue baby. The humaine society will be the closest and best place I think to start. We like fluffy babies and if it is fixed it can be a boy or girl. Usually they already have their shots from there so I am told. We were offered a lopso pup for free but I am scared to get another one privately. More on this as it develops.

    Hubby and I are going to a party tomorrow for the 4th. BBQs and drinks. Lots of music and Noisey fireworks. Lots of other kids so nina should have a blast. Nina and I even decided to be festive and wear summer dresses. Yes you read that correctly. I am wearing a dress with little shoes and everything lol. I may take a pic MAY even post it... then again may not. Would love to have someone take one of all 3 of us. We will see who knows. I am looking forward to having FUN that is all there is to it. We all 3 deserve it. It is in the evening of course so as long as Nina gets her feedings all in then she can "be like everyone else" and eat/drink like everyone else.

    Well I guess I have rambled on enough. Would like to tell my new freind Casie that I will be in seattle Tuesday evening until Thursdays appointment. She has an appointment wednesday for her gtube so they will just keep us in town. If you guys also have an appointment lemme know I will come in early on shuttle if I can. My friend Casie is an amazing mom who shares many common parenting adventures as I do. She is a wonderfull source of information for me and support. Since I have met her I have felt less insane hehehehe. Perhaps she is just as loony as me and we balance each other out but she is awesome. Her lil man and Nina have lots in common too. Check her out at (i have asked her for permission) the link below. You may want to let her know that I sent ya so she doesn't think you are some deranged cyber stalker unless of course you are and in that case go away lol.

    TO CASIE'S SITE CLICK BELOW:

    http://www.thecaughlincrew.blogspot.com/

     

    Ok that being said...

     

    readyweekend

     

    dancingbaby                                                 2088011381

    Be safe my friends and talk soon!