MY ROCKSTAR

My girl ROCKED today!   

We had the opportunity (we shall call it an opportunity even though I literally forced this) for Hailey to visit an all special needs school in our district.  When Hailey was little, I was determined to make sure that she was mainstreamed in a regular classroom with a full time aide...and I made that happen for her the first year.  It was apparent after Kindergarten that this plan was no longer going to work.  She was falling further and further behind and being left out by the children.  Not because those children were mean or treating her poorly but because she just couldn't keep up. For first, second, third, fourth and the beginning of fifth grade, she has been in a special education classroom on a regular education campus.  There have been tons of problems and she just hasn't really fit anywhere.  So, we were excited to have her visit this new option.

The catch is that the children there are a little bit more independent than she is and a little more advanced.  So she had a visit today where she got to "try it out".

And she did perfectly!  She sat at the desk assigned to her, followed all of the directions, did the assignments, participated in the PE (which was bowling...her favorite thing!!), stood in line, took her own jacket off!  YAY!  

I am so proud of her.  

And she got accepted into the program!  YIPEE!!  

The kicker is that they offered her start date to be January 30...which is Tracey's birthday.  I have to say that Tracey must be pulling some strings in heaven and making sure that we all are taken care of.

Lightening Speed

Hailey loves her sister so much and Aubrey loves her.  They have a bond that is undeniable and I love to watch when the connection between them shines through.

The truth is though that Aubrey is starting to pass Hailey up.  And that is sad to watch.

Hailey will be 11 in less than a week...and in less than 2 months Aubrey will be 5.

Aubrey has started to play with her barbies in a different way.  The barbies talk to each other and they are set up a certain way.  When Aubrey plays baby dolls, she dresses them up and changes their clothes and pretends with them.

Hailey is still at the point in her playing that she just repeats the same thing over and over again with the barbies.  When Hailey plays barbies, the barbies walk up and down the stairs over and over and over and over again.  She may play with them but she doesn't understand how to make them sit down correctly and she doesn't understand the games that Aubrey is playing.  Hailey has trouble dressing herself, so imagine when she wants to copy her sister but she can't figure out how to change the dolls clothes.

It is all very frustrating to them both. 

Aubrey is also starting to get frustrated with Hailey.  Hailey tends to be a bull in a china shop at times.  She bulldozes her way into Aubrey's room with no regard to the game that Aubrey just took so long to set up.  Aubrey is getting to the age where she wants her "privacy" in the bathroom.  She doesn't want her eleven year old sister following her everywhere...especially not when she has to go potty.  She doesn't want to match her clothes anymore.

I understand Aubrey's frustration.  She is going to be 5.  She is trying to figure out who she is and have some individuality.  

The more Aubrey tries to get some privacy, the more Hailey wants to be with her.  It's like when you were little and sitting in the back seat with your little brother or sister and they kept touching you...and your mom told them not to touch you...so they put their finger as close to you as they could and then said, I'm not touching you, I'm not touching you.  Yep, it's like that at our house a lot lately...Only it's the reverse.  It is the big sister driving the little sister crazy.

They are reversing roles and I don't like it...but there's not a thing that I can do about it.

I can't force Aubrey to play with her.  I don't want to put Aubrey in the position that she is playing with her because she feels sorry for her or anything.

I think that I just have to come to terms with the fact that it is time.  It is happening.  Hailey hasn't gotten past that 5 year old developmental level yet and Aubrey is passing her up at lightening speed.

These are the things that make me cry at night.

What if Hailey needed a transplant?

Yesterday I read a story on my facebook about a little girl.  A little girl, much like Hailey.  She has a disorder that causes cognitive impairment...and she will need a transplant.  Please click here and read this, like I did.  Then like I did, get outraged.  Can you imagine if Hailey was denied a transplant because someone else decided what her quality of life would be?

It's noone's fault but my own

There are days in this life where I am down and there are days where I am up.  I mostly write about the down days because to tell you the truth those are the moments that I need support.  I need to get those days out of my head so that I can move on to the next day.  Those are the days that I need to write down.  Occasionally I have a really difficult day (like yesterday) where I would rather crawl back into bed and hide underneath the covers...where drinking an entire bottle of wine alone in my room sounds divine.  

I don't do rejection.  It really sends me into a tailspin.  I am sure that a therapist would have a field day with me! I am sure that they could take apart my childhood and dissect it and tell me why I freak when I feel like someone doesn't want me.  I am sure that they could blame a hundred people in my past for the reaction that I have when I start a cycle of self loathing.

But does it really matter why I do it.  And at this age is it anyone's fault but my own.  I am quickly sneaking up on 40 years old.  That means that I have evaluated my own breakdowns more than I care to admit.  16 years ago, I let that feeling run my life.  Then again 8 years ago.  3 years ago, I was close to letting it tail spin me again but I held on.  That self evaluation over the last 15 years has enabled me to recognize when I am losing it.  It allows me to give myself those few hours (or longer if necessary) to recover.  It means that I know that I shouldn't have interaction with people if I don't have to until I can get myself under control.  It means that I need to let myself cry and feel the rejection in the moment.  If I push it off for too long...it gets the better of me.

So yesterday, I got rejected.  Today, I won't be rejected.  I'm over it.  I gave myself the chance to cry under my covers watching general hospital and feel sorry for myself for a few hours.  Then I got up and resumed my life.

I used to be someone else.  I use to find jobs easily and have a passion.  I use to do more than just this.

Don't get me wrong.  I love being a mom and I love being a wife but staying at home and being a stay at home mommy was not in the plans for me.

None of this was.

I started looking for a new job in October 2008 after the yacht chartering disaster job and couldn't find one. A combination of no longer having a current work reference and the shit tanked economy and it was a no go for me.  I interviewed...a lot.  And I failed...a lot.  I always made it to the last round of interviews.  You have no idea how many times I heard "we are going a different direction".

I came to terms with the fact that I wasn't going to find a job in the current economy so I just stopped looking.  I couldn't take the rejection anymore.  It was awful...over and over and over again.

But I decided a few months ago to try again...and I got an interview and then invited to the last round of interviews.  Of course it was between me and 2 other people.

I got the news just now.  And the woman used the same words "we are going a different direction".

I hate looking for a job.  It is devastating.  I can hear everyone's positive support words now, you'll get the next one, keep trying...etc etc etc.  But I can't.  I'm not that strong.

These are the days that I hate.  The ones where everything is plugging along just fine and then something pushes you off the ledge you were teetering on.  I need a passion.  I need something.

17 weeks

Hailey hasn't been in school since September 12th.  That horrible day when she couldn't swallow.  It has been 17 weeks today since she left school that day.

17 weeks.

And I wonder why I've been so exhausted.  

Right about that time, I got a letter that the regional centers weren't going to be letting parent vendors handle their own respite hours anymore and that any respite workers would have to go to an agency...and couldn't handle any g tube or ng tube issues.  So basically, I lost all of my respite hours at the same time that she stopped going to school.

Besides every other weekend that she goes to her dads and the week that she spent there at Christmas, she has been with me 24 hours per day.  24 hours.  It is wearing on me...on us both.

I love this girl more than my heart can bear at times.  She is so amazing and has come so far.  I quite literally can not imagine my life without my little lady.  This girl who we were told wouldn't walk, or learn...who we were told we should put into a special home...who now runs most places and who is smarter than most of the therapists who work with her and can manipulate the world in such a unique way...She makes loving her so easy.

But how many of you with ten year olds yourselves can say that you would be able to spend 24 hours with them for 17 weeks?...She needs to go back to school!!!

I've been fighting for a different placement coupled with a one to one aide with her to monitor her so that she  won't try to sneak food while no one is looking...And I do mean fighting.  Tomorrow, she gets her chance.  They are going to let her come for a trial day at a school in our town.  I think that she will really fit there.  They are thinking that because of her special supervision needs that she wouldn't be a great fit but I disagree.  They don't know her and I do.  I am really really hoping that she can do well at this school.  

So if you are reading this, please keep us in your thoughts tomorrow.  She needs friends and she needs school and she needs to learn.

Meds

Hailey has a ton of medical professionals who she sees.  I have a list on the inside of the cupboard which houses all of their names and numbers.  On that list is all of her medications and emergency information too.  This list use to be a half of a page.  Since the crazy day when she suddenly lost the ability to swallow, that page has grown to be an entire page.  There is also another page on the other side of the cupboard which has instructions for her g tube and how to operate the feeding pump...just in case of emergency.

I say this because I am really good at listening to directions.  I am obsessive about following a schedule for her feedings and medications.  I do exactly what the doctors tell me to do.  If I have a question or don't think something is correct or working for her, I will call that doctor and ask them.  I trust the doctors.  I do my research on things and check what they are saying but I need to be able to rely on them.  I've talked about how even though some doctors have made mistakes, I have to trust them...what other choice do I have?

So the list of doctors goes like this...pediatrician, orthopaedic surgeon, gynecologist, ent, audiologist, opthomologist, rehabilitation specialist, neurologist, geneticist, 2 pediatric surgeons, gastroenterologist, dental surgeon and feeding specialist.  They all have special instructions and I write them all down, double check them and then work them into our schedule.  She sees four of these doctors at least once a year, four of them twice a year, three of them are every 3 months and two every month.

One of these doctors put Hailey on reglan while we in the hospital.  We spent 9 days giving her the reglan and four times a day, the nurses gave it to her with her feeds.  They specifically told me that the prevacid was to be given one time a day 20 minutes before feeds but the reglan was with or right before the feed.  The other day, I was looking online for a new doctor for a second opinion.  This doctor seemed to not really care when I called or brought her in and kept telling him that during every feed, there were residual stomach contents in the line when we started.  He kept telling me that as long as she was making weight gain that it was fine.  But she was still vomiting...a lot.  So while I was looking for a new doctor, I also googled reglan to see if she was receiving the therapeutic dose.  Many doctors start children like Hailey on less than therapeutic doses and then gradually increase depending on how they do.  So I wanted to know if she could get a higher dose.  When reading the medication recommendations, low and behold I came across something very interesting.  The recommended use for reglan is to give it 30 minutes before a feed...not at the same time.  So I called the doctors office and left a message.  And of course he didn't call me back (and still hasn't after 6 days).  So I started giving it to her 30 minutes before on my own and MAGIC!!  She hasn't vomited again at all...In 6 days...nothing!  And she is gaining weight beautifully.  And I have been able to up her feeds a little bit.

So the point is, sometimes we can't trust all of the doctors.  Her surgeon put in a request for a second opinion from another doctor and we have an appointment in a couple of weeks.  It just irritates me that something so simple wasn't conveyed to me.

A Very Scheduled Family

Dear Preschool Teacher,

I am very sorry that I can not stay for your impromptu meeting that you decided you desperately needed all of us parents to be at.  Unfortunately, my day is like a carefully arranged puzzle.  Please do not glare at me anymore when you say we must stay and I sneak out the back door as soon as I have the four year old signed in and settled.  I realize that to you, this meeting is the most important thing that is happening today.  I also realize that I have won the worst mother in the preschool award for basically ignoring your request that we stay for a few minutes (which always turns into at least 10 minutes).

You see, I can understand why you think that you need to tell us (once again) that we should stay in a single file line and sign our children in.  I can understand that you need to tell us (once again) that we should clean out their file folders each day.  I can understand that you need to tell us about the class policies every other week.  It appears that some of the parents can't get the basics the first time.  I know that what you say is important and that many of these parents are new to the preschool world.  It is just that I really don't have time for repetition.

I woke up at 5:00 am and jumped in the shower.  At 5:30 am, I was ready to tackle the world and gave my ten year old her first round of meds through her g-tube.  At 6:00 am, I woke her up and took her potty and then hooked her up to her feeding pump. At 6:15 am, the 4 year old came down the stairs and wanted breakfast so I gave her some french toast and juice and then emptied the dishwasher.  I straightened the living room and then woke the hubby up at 6:30 am.  At 6:45 am, I unhooked the ten year old from the pump and took her to the potty (again), then woke up the teenager for school.  At 7:15, I had dressed both girls, made all of the beds, started a load of laundry, poured my third cup of coffee in my travel cup and was out the door.  I buckled the ten year old in and made sure the 4 year old was buckled in her car seat and away we went.  We made the 45 minute drive to the 8 am appointment for speech therapy, where I shamelessly read blogs and a magazine and played on facebook.  At 9 am, we were on our way back home.  9:30 was the second round of meds and 10 am the ten year old was hooked to the pump again.  The girls did artwork and  I folded and put away 2 loads of laundry.  At 11 the ten year old was detached from the pump and I took both girls potty...and away we went again.  We repeated the get in the car routine for the third time today and then we drove to physical therapy.  At 11:30, we ran the ten year old into the therapist (literally, we ran) and then the 4 year old and I ran back to the car and made the 15 minute drive to her school.  (insert the request from you to stay for the meeting).  I shamelessly ignored you and signed her in, kissed her and ran (yep ran again) back to the car to make the 15 minute drive back to the therapy location in time for the 12:15 pick up. I made it with 1 minute to spare.  My day went on in pretty much the same manner until about 7:00 that evening...where I sat on the couch to watch tv and promptly passed out.

So you see, I had exactly 1 minute to spare for your meeting.

Now that you know all of this, can you please stop glaring at me when I ignore you.  I promise it is not because I am a horrible mother or that I don't care about your rules.  It isn't that I wouldn't stay and explain if I had time.  It is just that I don't have the extra time.  Rest assured if you actually schedule the meeting, I will make arrangements to be there.

Sincerely,
The Mommy of a Very Scheduled Family