Taxi!

Wow, what a day!

Today was spent shuttling kids to and from various activities, at one point I had 6 kids in my house! LOL

Emily, Andy and another friend are in the school play, Alice and Wonderland! Andy is singing in the choir and Em plus friend are doing props. Today I led a large group of kids (Emily included) in painting the stage black with all of its platforms. The kids worked really well and I actually had a lot of fun! Emily volunteered me to do everything art involved with this play! LOL

Karen took Tom to get a free download for his Nintendo DS, he had lots of fun and even got to eat ChikFilA. Then he came home for a play then went back to Karen's for even more fun.

Emily came home from the play with Andy and they had a break. Sam (Andy's sister) arrived with her friend Mary to complete my 6 kids. Tom, A, Emily, Andy, Mary and Sam all played Wii before returning to Andy's house for the evening.

It turned out that I had several hours alone, very rare and totally ruined by my headache LOL

Emily came home exhausted but happy that to have a great day. Tomorrow will be very slow for her but as Judy always says, pain urned is better than just having pain for no reason.

Tomorrow Tom cooks lunch again :)

Lost treasure

I was driving home tonight when I suddenly remembered Steve had a blog. He only posted on it 4 times and he posted several messages on my old blog so tonight I found them and printed them off. I miss him. I miss him alot ...

Wednesday

I was pretty concerned about Emily after her visit to the play therapist. When we got home she looked terrible so when I put her to bed I made the decision to let her sleep in. I know from experience that if you push Emily to hard she'll flare up so sometimes I just have to be the parent and make the call to keep her home. At 1 pm she finally woke up and was pretty much out of it all day.

After a quick subway (where she spilled her whole sprite on her sub and all down herself) we met Renee for a chat.

Overall it's been a slow day for Emily which I think it good. Tomorrow after the gym I'm meeting with the vice Principal to talk about keeping Emily home every Wednesday and possibly having the home school teacher come that afternoon.

Frustration across the nation

I'm not sure what's going on but Emily is back to how she was in the beginning when the medication started. Goofy and silly. Both her therapist tonight and Kelly PT noticed how much she has regressed. Right now she's around the mental age of 9 in the evenings. I'm hoping that this is just because school is very demanding and she's exhausted. Tonight she was delirious and fell asleep in her dinner. I'm seriously thinking of home schooling tomorrow so that I can observe her. Maybe it's the antibiotics for her bladder infection? When I woke Emily today I knew something wasn't right and I was shocked that she made the whole day at school. I spoke with one of her teachers early in the morning because when Emily got home last night she had forgotten where her homework was and what she was supposed to be doing so I called to ask for class notes. The teacher wasn't overly happy to be speaking with me really and wasn't sympathetic. It's the age old problem of Emily looking somewhat "normal" and people not taking the time to look at RSD closely. They assume that I'm making a big deal about nothing. This makes Emily so mad for several reasons but it's because she works so hard to overcome her pain. They make me feel like a psycho! These days I just try to except that some people will jump to this conclusion and it's mostly because I do my job well. People only except what they can physically see and with Emily other than her brace it's all inside. Both Judy and Renee who also have RSD have told me that they felt he same way and it frustrates them. You can't change this so for now we'll just deal with it, shame on them ...

Take a look

http://www.affirmagy.com/Page.bok?template=about

I found this amazing website today, take a look and do something for Breast cancer awareness today. They have the most gorgeous blankets with affirmations on, I'm looking for one for Emily and Tom.

"RED"

I'm nervous ...

Each day while Emily's at school she'll call several times from the nurses office to say that she's cathed or that she's taken medicine. I know that sometimes she just needs to hear my voice so I try to be a little goofy when we speak so it lightens her mood. It's hard.

Today the call was different. Emily was so hard to wake today I thought she was going to be late. I washed, dressed and cathed her in her bed then finally stood her up to do her hair. She looked pale and sickly. My first call came at 10:05 am "Mom, I found it hard to cath at school, something is in my tube". A little reassurance that all is OK, I crack an inside joke then it's back to class with her.

1:00 pm and she just called. "Mom, my arms hurt". My heart jumped and I felt sick. "My arms hurt and both of my legs have been aching all day". I detect panic in her voice but spoke softly so's not to show that I feel it to. The nurse told her that she had to wait 25 minutes until her next medication is due and she didn't know what to do. The nurse is correct she does have to wait, her medication is strong and can't be taken close together but Emily is beginning to lose it. I send her to her beloved Mrs S. and hope she's in her room, I'm waiting for her to call me and say our code word, "RED". If I hear it I have to go immediately and pick her up but she wants to stay, she wants to do well at school and in just over a month she's never used it. I want to go there, I want to drop everything and drive there at top speed and rescue her from this situation but this is my torment. Setting her free to find a way to cope alone is both humbling and scary but necessary if she's going to lead a "normal" life. As Moms we rescue our children from harm, or so we should, but in this case I have to allow her to go out into the big bad world and learn to survive.

I'm going to wash my kitchen floor and keep myself busy until schools out, I'm going to try to let my anxiety wash away instead of consume me.

Home schooling

Sunday, since school started has become our school day. Both Pete and I have noticed that since this all began Emily has lost her short term memory and right now it's the worst it's been. Today she had to complete a project for American History and oh my goodness it was hard work. The project itself wasn't that much of a challenge but Emily just couldn't keep the information in her head. I find it distressing because she never used to be like this but I don't show her that I notice. Today I repeated the same information over and over and over again even thought it was written in front of her. She'd even forgotten that the information was written on the sheet in front of her and when I said "look, there it is" she'd look shocked and then happy to see it. This being said you can imagine how it feels to send her to school each day. I've been working tonight on tools to help her remember and I have a new note pad and pen waiting for her for the morning. Maybe writing notes to herself will help settle her in some way because I think some of this is just being totally overwhelmed with school. Fingers crossed. Emily's project was finished after 3 hours and it looks great. She got a great deal of satisfaction from completing her task even though it was frustrating in parts. Good job girlfriend!

Tom cooks dinner

Guitar lessons with Zach

Well it turns out she couldn't refuse it. A quick phone call and the situation was corrected. You can't get someones hopes up like that then squash them especially not to my son and especially not now. I've not seen him that excited in a long time, he really tried hard.

Congratulations little boy, you're in :)

How can you refuse this face???

Choir

Tom was picked as one of 3 top singers in his class and got to try out for choir. He was so excited!! Everything went well until he was asked to sing an absurdly high song which he was unable to do. He was then asked to exit the room. :( Poor TOM

I'm fighting the urge to drive to Tom's school and ram the baton somewhere grossly inappropriate!!

Karen's Blog

http://karenkraziness.blogspot.com/

My friend Karen started her own blog! I'm looking forward to reading it :)

Boundaries

This is such a balancing act. I've found that discipline has slipped since Emily was injured and I'm having to enforce the boundaries with both Emily and Tom. It's easy to eat badly, relax bedtime and generally let things slide if you're not very careful. Manners have always been important to me and I've promoted a healthy relationship between my children because it's important to me that they get along. Some things have begun to slip so I've worked hard this week reestablishing those boundaries and things are getting back to a different kind of normal.

This week I've been back at the gym! It's time to take care of myself for a while because I've given so much to everyone else and now I look a little unhealthy to say the least LOL I've started scrap booking to help my stress and I'm loving sorting through my photographs. 6 months ago I would sit and cry when I looked at Emily before this happened knowing that she was changed forever but now I don't look at things so negatively and embrace the new Emily. Some days she's missing. Medication takes her far away from time to time but then on other days she's back and that cheeky grin reminds me that she's still in there. I look at the photo's and smile, I to have come a long way ...

What's bread without a little cat hair?

Banjo

My day was spent trying to figure out which bills to pay to get creditors off our back. I want to pay some bills then treat Emily and Tom to an adventure to Oklahoma zoo. I also hope to take the children to Arbuckle park. When I was a little girl we lived near woburn safari park, we could drive through the park and have monkeys hop (and steal car parts) all over your car. Since we've immigrated to Texas Woburn is a little far so Arbuckle is the next best thing.

http://www.arbucklewilderness.com/about.htm

It's a good feeling to be able to write checks to these people knowing that for a while at least they'll stop calling and giving me a hard time because I can't pay them. As good as I am at ignoring them I still hate getting the calls.

My office is a mess! I have papers all over every surface. I'm trying to keep Pete's business going as well as deal with my car accident paperwork from March. Medical bills from Emily plus some from Tom's broken foot last year. School paperwork for both children and bills for the house. So much to organise!! Luckily I'm good at this!!!

Tom's struggling a little to keep up with our fast pace and I don't want him to get left behind. I spent time with him tonight making bread. Pounding the dough is a great stress reliever for us both and I love spending time with him. It's amazing what you learn when making bread with your child plus you get a great end result. Tom made a banjo LOL Not sure why, lets not over think it LOL

The aftermath LOL

Emily made it up for school the first day but on day 2 she got up and bathed then crashed. Unable to wake her I ended up undressing her and putting her back to bed.

going, going, gone ...

Emily loved this car :)

Vroooom

The burger king!

The car show DJ's

Shiny!

A little crispy LOL

My crazy dancer :)

Dog me up homies!

Judy and John :)

The car show :)

After all of Cheryl's hard work it all came together so well. Loads of amazing cars and awesome people came together to raise money to help pay for some of the many medicals bills that we have piled up here in my office. Not only did they raise almost $3,500 they put a massive smile on Emily's face!! We had so much fun LOL I served burgers and hot dogs with some really funny people and Emily's friends came out to support her. Cheryl was amazing, running around like a headless chicken but getting everyone in line. Karen and Jody walked (or danced in Jody's case) around trying to fill a pot with money. Zach, Tom, Josh, Andy, Austin, Aaron and Beth all ran around eating burgers enjoying themselves. Judy and John came to support Emily and I know helped fill the money jar! Several of Emily's teachers came (from her new school) which was really kind.

I've posted some pictures!

We can do this!

Sarah and Laura

Emily was lucky enough to get some new friends this week. Sarah and Laura were given to Emily by Wes and Maria and they're totally adorable! Both around 7 weeks old, one has white socks on her front feet and the other has socks on the back. Emily likes to put them on her head!!

She's been really sick over the last couple of weeks as you can see by her little pale face but these little guys make her smile :) Thank you Wes and Maria!!

More surgery

Emily suddenly started to bleed heavily from her belly button port late last night. I took her to see her urologist today and he confirmed my thoughts, Emily has a granuloma which will need to be surgically removed.
I was sent home with enough medical supplies to keep a hospital running! Emily is still really sick from this bladder infection so it's hoped that if I flush her bladder each night through her port she'll get better faster. Once fit enough she'll go in for surgery.

One minute at a time

Just a tough day. I keep thinking of things I want to tell Steve and I can't because he's gone. Knowing I'll never get to say goodbye is really hard, I'm not ready to lose this wonderful friend from my life.

Emily is just not doing well. The antibiotics are really hard on her body and right now her whole body hurts. I'm taking her off of these nasty drugs and taking her back to the doctors to see what else we can do. She's missed over a week of school and it's going to be hard to recover from that if she doesn't get well soon. This is high pressure. I'll continue to home school in the meantime.

Tomorrow I'm teaching the British metric system, I've got to brush up because it's been a while :) Tomorrow is 9/11 and my grief will be put to one side as I remember all those who lost their lives on that terrible day.

Steve

Today at 3:30 pm I got the call from my friend Steve's sister to say that he passed away late on Friday night. They found my name in his book and knew that I must have been important to him. He was a wonderfully kind man who loved me like a sister and I'm going to miss him so very much. This last year has been difficult beyond words and I knew that Steve was always there if I needed him even when others turned their back. The void he leaves behind in me and in everyone who knew him can never be filled, I just can't imagine my life without him. He was so proud of the things I've achieved this year he made me feel like superwoman.

Don't rest in peace Steve, run free in the wind and drink fine red wine. Dance, sing and be happy my friend and know that you've taught me well. I will NEVER forget you ...

Despair

Emily's bladder infection is severe and she's on antibiotics. Unfortunately she's had a reaction to the new medication and by Monday lunchtime she was in agony. Just when Emily was flying high in her new school and things began to look wonderful for her it hits, reflex sympathetic dystrophy. I was going to capitalize those words but deleted it because that would have suggested that this disease is somehow important, that is can claim us. This week has been one of off the scale pain for Emily, a week of bed rest and frailty that's been absent for a while.

R ... Really
S ... Stupid
D ... Disease

I have a meeting tomorrow at school to declare Emily as special needs and my son recently attended a camp for kids with siblings that are chronically ill. What on earth is going on ...

The first week of school

The first school week is over and I feel that it went well. It's a huge learning curve for all of us but it'll get better. The early mornings were tough!! All in all a fantastic first week for Emily. She tried to hard to stay in school and focus on her classes and I'm very proud. Even with blood leaking from her belly button and a raging bladder infection she made it. This week she did 4 and a half full days with her pain level somewhat under control. She would have made 5 days but she had to see her Urologist.

Tonight I have a house full of children, a celebration that we all made it through a tough week. They have pizza and movies and Sims 2, tired smiley faces, companionship and the contentment that comes only from having a three day weekend.

Me? I'm tired LOL It's been a week full of meetings and anxious pacing.