Wednesday, September 28, 2011

Ronald McDonald House Fundraiser

I have to give you just a little background info before I can tell you about last night's event.



First - A few years ago, Tom's company moved locations.  During the process they had some leftover computers.  Tom remembered that the Ronald McDonald House (RMH) in DC was in need of some computers.  Since he couldn't get to DC, he called our local house and asked if they wanted them.  They did, so he took them there.  While there, the manager gave him a tour and mentioned that they were going to remodel the kitchen.  Tom said he would be interested in helping them in any way possible.

A year and a half later, he got a call asking if he was still interested in the kitchen renovation.  Of course he said yes.  Tom was invited to bid on the project.  But, it wasn't as simple as a bid sounds.  It was a long process of interviews and meetings.  There was a committee assigned to select a company for the job and that meant a lot of work, and time.  After several months they narrowed it down to three companies.  Then two, then one.  And they selected Tom!  I meant to blog about it weeks ago - but as you know - my blogging time has been scarce lately.

Since then, Tom's been at the RMH several times meeting his subs and going over measurements and plans, etc.  So, last week, Tom came home and told me that the RMH was having a fundraiser the next week and would I like to go.  I said sure.  Then a few days later (Thursday) he calls me and tells me that we have been invited as guests - and they want me to SPEAK about what the RMH means to me.  

Oh, and by the way, it's Monday night and they are expecting about 350 people.   Gulp.

So, I went home and started working on what I would say.  Amazingly, the words just flowed and it practically wrote itself.  

I felt MUCH better once I knew what I was going to say.  

So, on Sunday we had my family over to celebrate Harlie and Cooper's birthdays.  While they were all here, I asked them if I could read my speech to them to practice.  

I read the second sentence (keep in mind the first one was "Hi. My name is Christy".) and started crying.  Oh, no.  That's NOT a good sign!!!!

Everyone laughed (more in support, but also because it was pretty funny and pathetic) including me.  That just made me even MORE nervous.  

It's one thing to live your life - it's another to hear your life in spoken words.  I remember the first time I said that Harlie had Goldenhar Syndrome out loud.  It was hard.  

Anyway, I practiced and tweaked it some.  The impending doom of having to speak in front of so many people pretty much consumed me.  

Finally Monday night arrived and by then, I just wanted to get it over with.  Tom said that they told him that I would be speaking early in the evening, so at least I could get it done and then enjoy the night.  

The event was at a local hotel.  Once we got there (around 6:30) and found his contact, she told us that I would be speaking sometime between 8:46 and 9:00!!!!  Ugh!  The agony!!!  So, we walked around and ate some food (they had a lot of chefs from local restaurants there so you could try their food).  Luckily, it was open bar.  So I had to have a drink.  Or two.

Ronald McDonald "himself" was there, available for photographs.  So, Tom and I went and had our picture taken with him.  It was funny.  I hope they actually send us the picture.  And speaking of pictures, I am so mad I forgot my camera!  Ugh.

Finally, it was time for the speakers.

It says "Tom and Christy" but it was really just me.
My heart was pounding I was SO nervous!!!

I had to go up on stage (with lights!), stand behind a podium and hold a microphone.  Geez.  It was scary!  But, once I started speaking, I was fine.  I really was!  I made sure I didn't speak too fast.  I didn't mispronounce anything.  And I looked up and around the room as I spoke.  I was really proud of myself!!!  

Here's what I said:

Hi. My name is Christy.  

I knew that the Ronald McDonald House helped families.  I just didn’t know it would help mine. 

To give you a little background, we live here in Richmond.  I’m from here, and my husband is from Pittsburgh.  Our experience with the Ronald McDonald House is in Washington, DC.  Our daughter was born there, because we knew she needed specialized care that was not available here in Richmond. 

Harlie turned five years old, yesterday.  A huge milestone, considering during my pregnancy we were told that we had only a 5% chance of ever bringing her home. 

She has a craniofacial syndrome called Goldenhar.  Her abnormalities prevent her from being able to breathe through her mouth and nose, so she is trached.  She’s hearing impaired, she signs and is now learning to talk.  She is a happy, normal little girl with a lot of medical challenges. 

In addition to her craniofacial abnormalities, she also has a series of complicated heart, lung and spinal defects.  She’s had 20 surgeries so far (four of them open heart), and she’s had another 15 procedures under anesthesia.  We don’t know how many more are in her future.  But we do know that she will need a heart transplant at some point - to quote her surgeon - when her heart runs out of gas. 

All in all, she has spent well over a year of her life in the hospital. 

So, we’ve spent a lot of time in a Ronald McDonald House.  It has certainly helped our family financially.  Hotel rooms in Washington, DC aren’t cheap or conveniently located. 

And food is a big issue.  The only option for food at the children’s hospital in DC is their cafeteria.  It’s expensive.  And it gets pretty old after a while.

Because of the Ronald McDonald House we were able to have a healthy breakfast at the house, pack our lunches and snacks and take them to the hospital.  And after a long, tiresome day, we could come home and have a home cooked meal for dinner.  And most nights, cookies or brownies - my favorite.

But aside from all that goodness, the Ronald McDonald House did a lot more for me…

Harlie’s birth was not a joyous occasion, like it should have been.  While we knew about her heart and lung defects, we had no idea she had Goldenhar Syndrome.  When I was discharged from the hospital, I didn’t have to pack up any congratulatory flowers, or balloons.  No one knew what to say, no one knew what to do. 

Our social worker at the children’s hospital told us about the Ronald McDonald House and got us set up there.  We left the hospital and went to Target.  Normally, one of my favorite places in the world, just not that day.  I remember thinking I should be at home in my pajamas holding my little baby.  But, instead I was two hours away, standing in a Target. 

And I had never felt so alone.  And so scared. 

We bought some necessities and headed to our home away from home, the Ronald McDonald House.  I had never been there before.  The manager showed us around, and explained how things worked.  I saw other families there.  I saw thank notes from happy families who had gone home.  And I saw other new moms, who were just like me – confused, scared and in shock.

And then I realized I wasn’t alone.  I wasn’t the only scared mom who had to go through something I didn’t want to go through. 

And that brought an unbelievable amount of comfort to me.  And hope.  And at the time we needed both desperately. 

The next morning I walked into that hospital a new woman.  I had hope.  I loved my daughter and was willing to do whatever I had to do to get her home – where she belonged. 

Now, when we go to the Ronald McDonald House, we take our daughter with us.  The first night we stay together, the three of us.  She plays and explores and has fun.  And then we get up early the next morning to head to the hospital for surgery.  The Ronald McDonald House provides a routine.  It provides comfort – but now not just for me and my husband, but for Harlie, too. 

And for that, we are so, so grateful.  Thank you.

They clapped and I left the stage and went and stood next to Tom.  Immediately people started coming up to us, saying nice things.  They said thank you for sharing your story.  They asked how she was doing now.  And they said that I didn't seem nervous at all up there.  Crazy!  Oh, and two people told me that I just made a lot more money for the RMH.  haha!  

I met two women who lost their sons to complications from congenital heart defects.  One was 10 years old and the other was older than 6.  He died while he was waiting for a new heart.  It was a reminder that even though Harlie is doing great - there are never any guarantees.  Since Harlie's birth, I've met/known so many moms who have lost their children because of heart defects.  It is so sad.  And scary.  As one of the moms said, "they can't save them all."  Truly heartbreaking.  

Another person who came up to us was Ronald McDonald.  And a restaurant owner came up to me and told me that he's had two children born prematurely and he thought he had been through it - until he heard our story.  Then he gave me a hug.  It was really great to receive such warmth and kindness from complete strangers.

I am so glad I had the opportunity to speak.  I think it was a great experience.  And it wasn't nearly as bad as I thought it would be.  

Okay, that's it for now.
Thanks!
~Christy

Monday, September 26, 2011

Happy Birthday Cooper!

This little guy...


is three!


He is the funniest little kid.  We are so blessed to have him in our family.  Happy Birthday Cooper!

We love you!

I would say more, but we are off to a Ronald McDonald House fundraiser, where I am SPEAKING!  Gulp.  I am a nervous wreck.  So, I can't write more. I'll let you know how it goes... Please wish me luck!

Thanks!
~Christy

Sunday, September 25, 2011

Happy Birthday Harlie!

It is so hard to believe that this little girl...


turned into this little girl...


Five years old!?!?!  I can't tell you how grateful I am to be able to write this post.  How grateful I am for every close call that went our way.  How grateful I am for every wonderful moment, filled with smiles, laughter and love.  So worth all the struggles.  So worth all the heartache.  So worth all the pain.

I think she would agree.

Happy Birthday to my happy little girl!

Thanks!
~Christy

Friday, September 23, 2011

Nursing

I finally had my first interview with a potential new nurse today.  For a couple of months, I've been asking our nursing agency to keep a look out for a replacement for Brandy's maternity leave.  So far, nothing.  Typically, I'm not a worrier - but I am starting to stress about the situation.  The bottom line is that in order for Harlie to go to school, she has to have a nurse.  Or me.

I do have a back-up plan.  One I hope to not have to use.  If Brandy has to stop working before we find her replacement, a friend of mine is going to watch Cooper, so I can take Harlie to school.  Clearly, this is not a good long term solution.  And I pray that Brandy will still want to return to work after she has her baby.  So, I'm hoping I don't really need a long term solution anyway.

Since I had not heard from our agency, and I was stressing, I called another agency.  She said the only difficult thing about filling the spot is that most of their nurses live downtown or on the southside, which is not close, and the distance would make a 6:30am start time pretty unrealistic.

But she called this morning and said she found a nurse that doesn't live far and sent her on out.

I just want to state how incredibly difficult it is to invite a complete stranger into your home and your life.    We have been SO spoiled!!!!  I don't know how I'm going to do this!  The thought of some stranger suctioning Harlie, or helping her go potty, just makes me ill!!!  Yet, I have no choice!!  And you know what's sad?  Murphy didn't even ask who she was or why she was here.  Just a normal day... with various medical personnel coming and going.  La de da.

I'll be honest.  The nurse was a little odd.  But that doesn't mean she's not a good nurse.  Right?

I guess I'll think about it over the weekend.

I have a lot more to tell you, but I am falling asleep and I have to get up early and run 16 stupid miles.  In the rain.

Thanks!
Christy

Tuesday, September 20, 2011

YAY!

Tom found the photos!!!  Whew!  He's the greatest!  So, all is well again!


So great, that at a recent party (more on that later) Murphy got face painted to look like Tom (it's football season, hence the beard).  Pssst.... it was Tom's idea and Tom bribed him.  

I feel so much better now!  Now I can go and continue working on Harlie's birthday poster.  And maybe a little video... we'll just have to see how time goes.

Thanks!
~Christy

Monday, September 19, 2011

Who's got purple shoes?

Got Harlie some awesome new shoes this weekend...


I know, completely impractical.  But, she can wear them with or without her braces.  And they are FUN!  Tom's mom and stepdad (Grandma and Pap Pap) came to visit this past weekend to celebrate Harlie and Cooper's birthdays since they can't come next weekend.  They love all their gifts!  Aunt Mimi got Harlie this awesome spinning disco ball.  She LOVES it!  


And Grandma gave her this Tangled card that plays music when you open it.  She LOVES it as you can tell...




Cooper got this nerf hammer and Harlie promptly took it away from him.


Cooper finally has his OWN legos!  He loves them!


Cooper also got the Lego movie, Clutch Powers, and he and Murphy watched it today.  I did not hear a peep from them the entire time.

They also scored big with some Mercer Mayer books and lots of Charlie Brown DVDs!  Harlie can actually verbalize "Charlie Brown."  Thanks so much Mimi and Grandma and Pap Pap!!!

So, I'm in another panic.  Remember when I told you that we lost our pictures and sent the hard drive away to be restored, and after forever they said they recovered everything?  Well, I have to make a birthday poster board for Harlie for school.  So, I went to find some old pictures and we are missing most of 2009, all of 2010 and the first half of 2011.  That sick feeling in my stomach is back.  Hopefully Tom can find them...

More later!  Thanks!
~Christy

Sunday, September 18, 2011

Harlie's Homework, Classwork and Artwork

This was Harlie's homework the other night...


And this was a class project...


And for this week's shocker... she actually licked or at least put each cracker in her mouth!  And while that might seem completely natural, it totally isn't.  That is CRAZY!!!  And after "trying" all crackers, she went back to the graham cracker and took the smallest of nibbles.  Seriously, words do not describe how incredible that is.

And since I am finally getting around to posting some photos of her work, this next picture is from her Kindercamp experience.  They had to draw themselves with a friend.  And when they asked her who the "friend" was in her picture, she signed "Mommy."  Awwwww!  She really DOES love me!!!


Even though I'm just a floating head with no body.  I don't even care.  I take the love when it is given!!!

Oh!  And back to shockers... Tom and I went out last night to a party.  And Harlie's nurse gave her a juice box.   With a skinny straw (which is harder for Harlie to get lip closure around).  And she DRANK THE WHOLE DARN THING!!!  Unbelievable.  So, tonight when we went to the grocery store, I bought this...


And I'm hopeful that since it's similar to a juice box, she'll actually drink it on her own.  That would be awesome if she did!  That would be great for her snack time.

I also bought these...


Just thought I'd see if these cups were more fun for her.  I'll try anything if it makes her want to eat or drink.

Stay tuned this week.  I have a ton of posts coming up.  Next weekend is a BIG weekend... Harlie will turn FIVE years old on Sunday, the 25th.  And then the next day, the 26th, Cooper will turn THREE.  Oh, her birthday is so full of emotions.  My thoughts and heart have been consumed with what was going on five years ago right now.  I was on bed rest in McLean, VA, staying with my brother's wife's sister and her family so I could get to the hospital should anything happen (thank you Kerry and Thomas!).  How scared I was.   How I had no idea of what was to come.  How I had no idea how strong I could be.  Or how strong Tom and I could be.  Did you know that the divorce rate for couples with special needs children is between 80% and 90%?

So, more to come...

Thanks!
~Christy

Thursday, September 15, 2011

More Misc. Updates

If you've spoken to me this week, you know I've been stressed.  Kindergarten is hard.  Being Harlie's advocate for her education is hard.  But, I know it will get better.  Everything is just so... new.  The hearing impaired program went through a lot of changes this summer.  The program is new to this school.  The principal is new.  And everyone working with Harlie is new to us.  Our routine is new.  And the longer days and harder work is new.

We are going to have a meeting next week to discuss Harlie's communication issues.  I think I will feel much better after that.  It's just that I know we need to make some changes to her IEP (Individualized Educational Plan).  But, until then, they have to follow the one that's in place.

Also, the bus situation is really stressing me out.

Here's the skinny:  Harlie goes to a school out of our zone that's about a 10-12 minute drive away.  She is the farthest one from the school, so she is the first one to be picked up and the last one to be dropped off.  Our pick up time was 6:48am to be at school at 7:33am so she's in her seat by 7:50am.  Last week it changed to 6:53am.  And then, without telling me, they changed it to 6:41am - so she missed the bus that morning.  Even though it comes to our driveway, she missed the bus.  Then it went back to 6:48am.  It changes because kids are being added or removed from the route.

The drop off time was 2:50pm.

She is spending a lot of time on the bus in a day.  And it is negatively impacting her nutrition.  Today I spoke with Transportation.  Our new pick up time (as of the beginning of the conversation) was 6:40am!!!!  And drop off is 3:00pm!!!  That equals TWO HOURS on the bus each day!  I already wake her up at 6am.  And we struggle getting in an oral feeding for breakfast.  So, we have to tube her a lot in the mornings.

She eats lunch at 10:40am.  She self feeds a few ounces of fruit (at the most) and the rest is formula via her g-tube.  And then she doesn't eat again until she gets home after 3pm!  By the time she gets in, and we get her snack ready, she's eating at 3:30pm.

So, when we sit down for dinner, around 6pm, she isn't ready to eat again.

And she gets a fraction of real food than she's used to getting.  And this has it's own chain reaction of issues.  Real food plus formula works better for her body than just formula.

I explained this to Transportation and she was sympathetic.  But, the fact is that there are only two special needs buses that serve this school (take the kids that aren't zoned to go there, but go there for special programs).  One bus goes to a totally different area of town.  And one comes to our area.  I asked her when they add an additional bus to create another route and she said when the pick up time is 6:30am.

She went on ahead and pushed back the arrival time at school from 7:33am to 7:40am.  So, she changed our pick up time from 6:40am to 6:47am.  She also said she would look at the route to see if they can do anything to help.  But, I don't have high hopes.

So, we might have to drive her there in the mornings.  But, I'm stuck in the afternoons.  Cooper naps and there is no way I'm waking him every day and letting him get shorter naps five days a week.  Plus, picking her up means I'm not picking up Murphy.

And then I think about how different (easy) it is to get Murphy up, dressed, fed and to school.  Ugh.

That reminds me, Cooper is liking his new preschool.  Today was his second day.  And when I picked him up his teacher told me that he needs to work on his "listening skills."  Really?!?  I had no idea.  Is there anyone that doesn't need to work on their listening skills?  Especially a two (almost three) year old?    Funny stuff.

Back to Harlie again, she counted from 1 to 11 (the number of days till her birthday) on Wednesday - using her voice, in front of the whole class!  And her teacher told me that she asked for the "blue lizard" using her voice and she totally understood her!  She is trying to verbalize so much more now!!!

Her teacher also asked me if I wanted to provide a goody bag to keep in Harlie's class.  So, when parents bring in treats (cupcakes, cookies, etc.) for the whole class, she can pick something out of her goody bag so she isn't left out of the celebration.  Awesome!!!

I've started working on Harlie's private therapy schedule.  My plan (as of now) is for her to see her physical therapist and a prior speech therapist (to work on the device) on Thursday afternoons.  I think I might hire an additional speech therapist for another day to work on her verbalizations.  I've got messages out to two STs, so we'll see what we can work out.

I called our local rep for the company that makes Harlie's communication device.  I am going to schedule some time with him so he can train me on some things on the device.  He will also train school personnel, so hopefully we can work something out soon.

I made an appointment to see Harlie's plastic surgeon in October.  She's going to have to miss a whole day of school for that one.  That stings.  But, there is nothing I can do.  He only has clinic one day a month.  He said after the last surgery that he would want to wait years before doing another one.  And by the time summer gets here it will be almost THREE years since her last one.  That is so hard to believe.

We are also going to see her local ENT next week.  Ever since that episode when her ear bled, she keeps pointing to her ear and signing "broken" to tell me that her hearing aid isn't working - even though it IS.  So they worked us in for next week to have her look in her ear and then be tested by her audiologist.  I am hoping it's nothing serious or permanent.  And I'm trying not to worry about it.  But, of course I am!

I forgot that I haven't shown you Harlie's book!  I will take some pictures of it and post about that soon.  They are passing it around to all the kindergarten classes.  Today another class read it and a lot of the kids came up to Harlie on the playground to say hi.  For the most part they all seem to want to play with her.  But one girl wanted a closer look at everything and would not get out of Harlie's personal space.  Brandy tried to answer her questions (why this, why that) but she wasn't satisfied.  The worst part is that while she was turning her head and studying Harlie, she had a scrunched up look on her face.  When she wouldn't stop, Brandy had to send her away.  Brandy said that Harlie didn't seem to notice the girl's expression, she just wanted her to get out of her face.

As smart as Harlie is, I can't help but wonder if she's more aware than she's letting us know.

Well, it's late.  So, that's it for now.

Thanks!
~Christy

Monday, September 12, 2011

Quick Update

So much to blog, so little time...

Murphy

I can't remember if I told you that we had not restarted Murphy's ADD meds.  He gained four pounds over the summer (and he's still super skinny) and we were so enjoying having him hungry!!!  So, we were going to see if he could be successful without the meds since his teacher/class this year is a better fit (a calmer, less stimulating environment) for him.

I e-mailed his teacher Wednesday night (day 2) and let her know of his ADD diagnosis last year and that we had not restarted his meds and we would appreciate her feedback.  She e-mailed me back that he was doing "fine in some areas but having difficulty in others."  She said she wanted to meet with me or talk over the phone.  Darn it!!!

So, she called that afternoon and told me that he is a very sweet, respectful, social and likable kid.  But, that he cannot stay focused.  She said that he plays with the stuff in his desk.  When she was explaining something, she looked over and saw Murphy using two glue sticks as binoculars.  He clearly was not listening to a thing she was saying.

So, on Friday, we gave him his meds and sent him on his way.  The good news is that afternoon his teacher e-mailed me and said that he was so much better that day and that he was calm, focused, helpful and one of the best students in class!!!  At least we KNOW he needs the meds.  No more second-guessing ourselves on this one!

The bad news is that all day on Friday he only ate a few carrot sticks and a half of a granola bar.  All day!  It sucks that we have to chose between learning and nutrition.  They are both important!!!

Harlie

Kindergarten is going well for her, I think.  She seems to like it.  But, of course she can't tell me all about it.  Although I am THRILLED to report that she has been wearing her speaking valve (PMV) and she has been making a huge effort to verbalize.  The other day I asked her if she had a good day and she SAID - clear as a bell, "good day."  Murphy was in the kitchen and he could hear and understand her perfectly!  That was so awesome to hear!!!

There are some kinks to work out (which is totally expected).  Unfortunately, her communication device isn't being used the way it should.  And even more unfortunately, it's going to take some effort to get that to change.  After I found out they went all week without using her device I e-mailed her teacher that we need to have an IEP meeting.  The bad thing is that we had her last IEP meeting before we made the big decision to pursue using her device as a main means of communication.  So, she has been assigned a sign language interpreter.  But, that's not what she needs.  She can hear with her hearing aide on.  She just needs someone to help her use the device to speak.  So, we'll see what happens...

She missed the bus this morning.  Her original pick-up time was 6:48am.  On Thursday we were told the new pick-up time (starting Monday) would be 6:53am (YAY!).  So, this morning we went out at 6:53 and she was driving away.

The worst thing about this was that it was the one day that I had a commitment to be somewhere at 9am and it was an hour's drive to get there.  So, when she missed the bus at almost 7am, I still had to get a shower and get ready AND drive them to school (in the opposite direction of where I needed to go).  Oh, and my gas light was on, so I had to stop for gas.  Considering I woke up at 5:30 to start working on  getting her up and ready (I wake her at 6am after I give her a breathing treatment and meds) it was a busy morning and not a good one to miss the bus - it really stressed me out.  I felt so horrible that we didn't try harder to be at the end of the driveway.  But, we were feeding her breakfast and then on the way to the door Harlie said she had to go potty.

As it turns out, Brandy found out that after they told us our new pick-up time was 6:53, it got changed to 6:41!!!  And no one told us.  But the driver came at 6:48 and then waited the required TWO minutes and then left.  UGH!!!

So far there are a lot of issues with riding the bus.  And they are making me feel very stressed.  But, I really don't want to commit to driving them everyday.  So, I'm going to call Transportation tomorrow and see if they can do anything to fix the issues and make riding the bus a little more bearable.  As it stands right now - she spends TWO hours a day on the bus!!!  Doesn't that sound like it's too much?!?!?

I am also worried about the playground.  Jennifer went to school with her on Friday and she said that she was run over by the other kids.  She tried to help her play, but she's so slow compared to the other kids so they just run right over top of her.  Jennifer said that she and the other little girl that's hearing impaired gave up and just went and sat on the steps.  Ugh.

Tom measured the kids the other night on our measuring wall upstairs.  Cooper is one inch shorter than Harlie (and he's two years younger) and Harlie is SIX inches shorter than what Murphy was when he started Kindergarten.

Oh!  And Harlie lost her first tooth - naturally!!!  She's lost four in the past, but they were all due to surgical issues.  This is not the best picture - but it's all I got.  She didn't quite understand what all the fuss was about and had no interest in showing her teeth to the camera.


The picture was taken during a feeding.  Here are more photos from that awesome (note the heavy sarcasm) feeding session:





Are you still here?

Why do you make me eat this crap?
Honestly, I don't know who hates oral feedings more - me or her?

Cooper

Tomorrow is Cooper's first day at his new preschool!!!!  WOOHOO!!!  My house is a wreck, Harlie's food supply is low, laundry is piled high and paperwork is out of control.  Oh I can't wait to get some things accomplished around here!!!!  And I hope he really likes it, too.

Well, that's it for now.  More later!

Thanks!
~Christy

Tuesday, September 6, 2011

The First Day of School!

Whew!  What a day!  I must say that it went very well and we are so happy about that!  

There are some things we're going to change up for tomorrow.  I fully expected this week to be full of changes, trying to figure out what works best.  Normally, I go into Harlie's room and start her breathing treatments (2 meds, which takes about 15-20 minutes).  I put it on her while she's sleeping and don't wake her until it's finished.  While that's running, I draw up her Prevacid and baby aspirin (they are pills and need about 15 minutes to dissolve in water in a syringe).  I have to give that to her on an empty stomach, and 30 minutes before she gets any food.  

This morning, to save some time, I only gave her the Prevacid - it only takes a few seconds to dissolve.  And I'm going to give her the baby aspirin at night from now on.  

As for her breathing treatments, she gets two, one is given once a day, the other is given twice a day.  So, I'm going to reverse it and give her both tonight and then in the morning, I'll only have to give her one.  So, between those two changes, I'll save almost 30 minutes.

At any rate, she fought waking up, as usual.  I had to physically pick her up and put her feet on the floor.  She was a little upset.  She walked to her window, pulled the shade back and looked out (it was still DARK) and then turned around and looked at me, as if to say, "what the hell?"  

Once she was up and I got her teeth and hair brushed, she was already in a better mood.  Then I let her choose what she wanted to wear (between two outfits I laid out for her, of course).  And she hurried downstairs.


As soon as we got downstairs, it was almost time to go.  Brandy got here and put her shoes on, tubed her a can of breakfast and the bus pulled up at 6:48am sharp.




I didn't even think about the weather and let her walk out the door in a tank top and shorts and it was chilly and rainy!  I had to run back in the house to get her a raincoat.  But, Harlie is VERY hot-natured so she was probably just fine.  We forgot to put on her harness before she got on the bus.  And then when I put it on, it was too big, so I had to run back in the house to get a smaller extension for it, so it would fit.  So, the bus was at our house for a little longer than it should have been.  Tomorrow will be better for sure.

Harlie had no problem getting on the bus.  And even though she's gotten on the bus before - it felt SO very different for me.  I definitely had to fight back the tears.  Okay, fine.  Yes, I cried a little.  Tears of both fear and joy.

Once she was off, it was time to focus on Murphy.  I took a wipe board and wrote his "to do" list and he went through everything on the list without one word from us.  I can't tell you how much better this made our morning.  Seriously - the best idea I've had so far.  He was ready to go and wearing his backpack - 40 minutes before we had to leave the house.  When Tom told him to take it off because we weren't leaving for a while, he said that it was "comfortable."

Finally, 7:30 rolled around and it was time to leave.  And boy was it yucky out!  It rained last year on the first day of school, too.



I cannot tell you how different his class is this year from last year.  All the kids were in their seats, quiet and calm and ready for class.  Last year it was pure chaos with kids moving in all directions working on their check-in procedure.  I am really excited to see how he does in this calmer environment.


For various reasons (mainly due to the holiday weekend) we did not have Murphy's meds ready to give to him today.  But, after seeing the class environment, I think we might see how he does without the meds.  So, we're going to hold off on them for a few days.

When I picked him up from school today I asked him how the first day was and he said, "It was awesome!!!"  How great is that?  He said he really likes his teacher.  And they went to the library and he checked out a chapter book - and no Halloween books!!!  Wow!!

About an hour or so into the day, I sent Brandy a text to see how Harlie was doing.  She said that she was doing well, dancing in circle time and that she heard Harlie answer a color question with her device.  I asked her how the other kids were and Brandy said they were fine.  They just had some questions about why she doesn't talk.  The teacher answered them and then moved on with class.

After lunch Brandy sent me a text to let me know that Harlie fed herself half her peaches and drank an ounce of formula, with NO problem!!!  Then Brandy fed her the rest, discreetly, with no resistance from her at all!!!  That girl kills me.

She also said that she asked Harlie if she was having fun and Harlie said "yes."  Then she asked her if she liked kindergarten and she said "yes."  Yay!

Overall, I think she had a great day.  Later on, her teacher called and said that she did very well.  She followed instructions just fine.  She didn't want to participate in some activities, but after some prodding, she finally gave in and did what she was told (like coloring or something).  And then she said that they have PE tomorrow, so she wanted to know what she could/couldn't do.

After they were both home from school, I was immediately exhausted!!!  Come bedtime - they all went to bed with no problems and were sounds asleep in just a few minutes.  Ahhh....

Speaking of sleep....time for me, too!  Thank you!!
~Christy

Monday, September 5, 2011

The Night Before Kindergarten

Another week has passed since my last post...  I hate when that happens.  I've definitely gotten to the point where I need to blog.  Even if I had no readers, I would still blog, and then feel better.  It just helps me to think things over, find the positive, and then hold on to it, until I move on to the next thing.

I have a lot to tell you, but will have to get you caught up later on this week.  For now, I want to talk about how tomorrow is Harlie's first day of Kindergarten!

What I'm excited about:

1)  The fact that she's here, alive and doing so great that she's able to start Kindergarten at all.  This is a day I never dared to dream about.  Since before she was even born, the focus has been on getting through THIS day and worrying about tomorrow, tomorrow.

2)  The hope that being in a general education class will have a profound, positive affect on her in all areas and that she will begin to socialize with her peers in a more age appropriate manner.

3)  The possibility of what she can/will learn this year with more hours in a classroom and the support of a brand new team.

What I'm proud of:

The fact that she's spent more than ONE YEAR of her life confined to a hospital bed, recovering from 20 surgeries and many other procedures yet she's still academically ready to start Kindergarten.  Isn't that AMAZING?!?!?  This is something I must remind myself of if/when I doubt her abilities OR, more importantly, OTHERS doubt her abilities.

What I'm afraid of:

1)  Her not cooperating or adjusting to the new demands of school.

2)  Other kids.  More specifically, kids not accepting of her.

3)  Her noticing the reactions of others (and hearing the comments/questions) and then it affecting the way she views herself.  I think this is probably not an "if" it happens, but a "when" it happens.  And I SO don't want it to happen.

4)  Educators not connecting with her or thinking she doesn't know or can't learn.

5)  That she'll get hurt - physically, I mean.  That she'll get knocked down in the hallway or on the playground and that she will seriously hurt herself.  Her spine is still healing and her jaw is full of screws.  What if she gets hit by a ball in the chest?  I've heard stories of that killing kids with heart defects!  Okay, deep breaths.  I know that's not likely to happen, but it's still something of which, I'm afraid.

6)  Our new morning schedule and her bus arrival time - 6:48am!!!  Students have to be in class by 7:50.  We must be the furthest away, so we are the first pick-up.  Since she's special needs attending a different school than where she's zoned to go - they send a bus to our house to pick her up.  Harlie is NOT a morning person.  I can count on one hand how many times she's woken up on her own without one of us having to go and wake her up.  And most of time you have to physically "help" her get out of bed.

What I'm sad about:

That my daughter does not attend the same school as her brother(s).  I cannot tell you how incredibly sad this makes me.  But I'll try.  When we bought this house - we didn't buy it for the house, but more for it's location - we could walk our kids to school!  When we had Cooper, we were thrilled that she would be flanked by two brothers who could take up for her and look out for her.  We had no idea that they would be no where near her (like miles and miles away) when she went to school.

I am terribly sad that she will be all alone, in a completely different school district.  Murphy is sad, too.  At first he was so excited that she would be going to Kindergarten and he said, "With me at my school?"  And we had to say no.  And then he hung his head.   And I'm sad for Cooper, too.  Because he'll end up being alone, too.  It's just not how it should be when you have three kids so close in age.

I think of how different this experience would be for all of us if tomorrow morning, we could all leave the house at 7:30 and walk down the street together.  But those are the images I have to shut out from my mind.  Just like her not having a trach or her being able to speak or eat regular food.  It is just not to be for now.  So no use torturing myself.

I probably should have ended with the "What I'm excited about" items.  I would prefer to end my posts on something positive.  And I am happy that she's starting kindergarten.  I really am!  But it also kinda feels like I'm throwing her to the wolves.  And for the moment, I am glad for the trach so that Brandy will be with her.  Ahhh, our nurses.  I am so, so thankful for our nurses.

Well, that's it for tonight.  Please send positive thoughts for her (but mostly for me) that all will go beautifully and that kindergarten will be a wonderful experience for her (and for me).

Thank you!
~Christy