Quick One

I hope you all had a Happy Thanksgiving.  We did.  We had most of my family over to our house.  Tom made a wonderful dinner.

Here is a picture of the vegetables he roasted (before he roasted them)...

Aren't they beautiful?  And they were yummy!

Tom and I did something different this Thanksgiving.  We started the day off with some exercise.  I ran the 5-mile Deep Run Turkey Trot.  And then I went back home and picked up Tom and we both did Adrenaline.  It is an hour long outdoor fitness class.  It was great.  There was a huge turnout.  And we had a lot of fun.

It was a very busy holiday.  And I was left with no time to blog.  I wanted to write something about how we're so thankful.  But, I think you already know that.  So, I'll spare you.

I'll jump to today instead.

The weather has been great so the kids have been playing outside a lot.  Yesterday, a group of kids in the neighborhood set up a lemonade stand.  So, today Murphy came in and asked me if he could sell some toys they don't play with anymore.  Of course, I said no.  A while later I went out to get the mail.  And I found Murphy and his friend selling leaves, and those flower-grass things you see sticking up from the upside down recycle bin.

They were also drawing pictures on a pad of paper - and selling their drawings.  Here's the sign...

All you really need to know is the beginning - Drawings are $1.  PS - if you don't have a dollar, you can pay .25 or draw your own.  Ahhh, they are funny kids.  I asked them if they were distracting drivers as they drove down our street and they said they were, "entertaining" them.  Nice.  Of course I had to tell them that no one could read their sign while driving.  And I had to tell them that no one would buy their leaves considering they were dead leaves and they were everywhere!  After looking around, Murphy nodded in agreement.

I then told him that if he wanted to sell his artwork - he needed to take more time with his drawings.  So, he went inside and got some supplies.

When I spent some time looking at this "display", which I think was very clever of them, he said, "Mommy, they are not everywhere."  Which is true.  This plant (whatever the heck it is called) is not in every yard.

I have to give them credit for their display.

Soon the whole family ended up at the end of our driveway.

I can't believe it, but they actually "made" $15.00!  One mom drove by and purchased several drawings for $10.  And then a neighbor purchased a few for $5.  Honestly, I feel terrible!  So, Murphy is going to take them some cookies tomorrow.  Tom and I made pumpkin whoopie pies last night.  And I have to say that they are pretty darn good.  While I can appreciate their desire to make some money - I really don't want them out there asking for money, you know?  So, I will feel better if I think that they got something for their money.  And I think that's an important lesson for Murphy to learn, too.

And the evening ended on a positive note - Brandy had her baby girl tonight - a week after her due date!  Brodie Myra was born at 6:56pm and weighed 8 pounds, 6 ounces.  I told Harlie that Brandy had her baby and she smiled.  Harlie's been swaddling her baby lately.  I think she's practicing!  I can't wait to take Harlie to meet Brodie.  That's going to be fun!

That's it for now.  More later!
Thanks!
~Christy

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

Transitions and Kindergarten Screening

It is now Monday night.  I wrote this post on Sunday night.  I was a little upset and I thought about deleting it - but these feelings were real at the time and it just illustrates some of the challenges with having a special needs child.  So, I'm posting it - with today's update at the end.

*****

With just two weeks to go until school starts - there's a lot going on.  I'm pretty upset right now, so I'll try to be as understandable as possible.

Change in School Location
Last year (and the year before that) Harlie went to a different school than where she will go to kindergarten.  That school used to hold the Hearing Impaired (HI) program.  But, the county is trying to establish "feeder patterns" in the special education areas so that kids in the same program stay together as they age.  And this is the first year, so you know how that could go.

Sounds like a good concept.  But, I have to admit that I was sad.  I liked where she was, and she seemed comfortable there.  People knew her.  And who actually likes change anyway?  Especially when it comes to your special needs kid?  But, everyone really talked up the principal at the new school and said she had a special education background, so it was a good fit.

We met the principal and toured the school along with a group of HI kids who would be transitioning to this new location as well.  There's only a handful.  And only a total of four starting kindergarten (two who speak, so they don't need interpreters/instructional aides) and the other two is Harlie and a classmate of hers from the previous school (who do not speak and require an interpreter/instructional aide).  All these kids also see a HI teacher (in addition to their regular teacher) during the day as well.

Well, just a few weeks ago I heard that the principal has left the school.  And she was only there for two years.  And the one before her was there for a short time as well.  So, now I know that the school has been through a lot of change in the past few years.  And they have not hired her replacement.  So, the school has NO principal.  And school starts in two weeks.

At the ice cream social on Friday, the resource teacher spoke in place of the principal.  It appears that there is no assistant principal, so she will be filling in as the principal until one is hired.  So, you know that she will be stretched pretty thin.

Staff Changes
Harlie did not need an interpreter/instructional aide last year since she was in preschool (she will require one now, though).  But she did get HI instruction from an HI teacher.  And she is awesome and is so good with Harlie.  She challenges Harlie in a way I cannot.  I'm her mother, after all.  So, I have been very thankful for this HI teacher.  She is also the one that wrote this book that I haven't been able to show you yet (as soon as I get the books, I will show you).

During our last IEP meeting at the end of the school year, the county's audiologist was in attendance.  I asked her if Harlie would keep the same HI teacher at the new school.  She wouldn't tell me then because she didn't have all the assignments done.

During the summer, I found out that we would have the same HI teacher!  YAY!  I was so relieved because I really feel that so much of Harlie's success/failure is dependent on the person in this position.  I also found out the county's audiologist has since retired.  And they are looking to fill her position.

I also learned that they have not filled the interpreter/instructional aide position.  At least, the last I heard they had not.  And I really want to meet this person and talk to them before school starts.  Now that we are going headstrong with the communication device, this person needs to be aware and on board - and educated on the device so she can help Harlie use it during the day.  This person will be beside Harlie most of the day and her success with the device is dependent on this person helping her with it at school.

But that person doesn't exist yet.  And there's two weeks before school starts.  What if they can't find someone qualified?  Do they hire anyone just to get a body in there?

Can you tell I'm slightly stressed about it?

And then tonight, I get an e-mail from her HI teacher telling me that she doesn't think she's going to be at Harlie's school after all.  And she doesn't know who will be assigned to Harlie yet.  What?!?!  I can't tell you how much I HATE to lose her support.  She has been awesome with Harlie and I really like her.  It truly saddens me to lose her!!!

I can't help but feel that everywhere people are going is more important than the places they're leaving.  And I hate to sound negative, but I don't really see any evidence of an existing HI program anymore.  And if there's no HI staff there - and there's no HI staff at Harlie's home school just a few houses down my street - then why don't I just send her to our home school with her brother?

I'm really trying hard not to freak out right now.

But, I'm already doubting "our" decision to send her to kindergarten.  There just seems to be too much transition and instability right now.  Are they scrambling to fill these positions and will the quality of the person be sacrificed for a warm body?  Ultimately Harlie will suffer if the county doesn't figure things out.

And who the heck do I talk to about all this?  Who's my point of contact?  And if I don't send her to kindergarten where would I send her?

The only person left for me to talk to about this would be Harlie's kindergarten teacher.  And I'm seeing her tomorrow - but only for a pre-screening with Harlie (something she does for all the students) and I think it's only a 15 minute slot.  Certainly no time for discussing all this stuff.

You know, I'm just sad and scared.  Everyone I was trusting to help Harlie be all she could be is gone.  And can I just say how FREAKING hard and scary it is to have to COUNT on other people to help my child succeed?  I am counting on the county to provide HI support so Harlie can learn in a way that works with her hearing impairment.  The gap between kids who are hearing and those who are impaired only widens with each passing year - unless you intensify the support as soon as possible.

At this current time I do not feel that the support is intensified.

Nursing Changes
And as if that isn't enough change and instability, Brandy (Harlie's nurse who will be going to school with Harlie most) is pregnant.  YAY for her!  She is due on Thanksgiving and she's having a girl.  At the beginning of her pregnancy, I joked that I thought Harlie needed a little brother or sister (you know, since Brandy is family now).  Anyway, while this is wonderful news for her and her husband, it does impact us a bit.  Right now the plan is that she will return after a maternity leave.  And then I will keep her baby during the day, so she can go with Harlie to school.

But in her absence, we need a nurse to go with Harlie to school.  And this scares the crap out of me.  I haven't had to find a nurse in over four years!!!  I admit - we are spoiled in this area.  We have been truly blessed and lucky.   But now I have to find someone.  That is not an easy task.  And it's complicated by the fact that I really don't know when we'll need that person to start (since we don't know when Brandy will have the baby).  And if I interview someone now - they could be assigned to another patient and then not want to leave that assignment to work with Harlie, especially since it wouldn't be a permanent position (at least that's the plan).  So, I'm going to have to wait until much closer to November till I can really start looking seriously.

And I also know that things don't always go according to plan.  And Brandy could have this little girl and decide that maybe she doesn't want to come back to work.  And while I sincerely hope that doesn't happen - I would totally understand and respect her decision.

So, needless to say, I'm stressed.  More so than I've felt in a really, really long time.  BUT - I am trying to keep things in check - because I am really hoping that things will work out.  Trying to have faith in the county since they have done well by us so far.  Keeping my fingers crossed that these changes will be good when I look back on them later.

Monday Night Update

We had the screening with Harlie's kindergarten teacher today.  So, a lot has "changed" since my post from last night.

First - her HI teacher was there and Harlie's main teacher must have realized it would take longer, so we had a longer time slot.  And we were able to talk about a lot of this stuff.

Harlie now has an interpreter/instructional aide - and she is someone who has worked with Harlie in the past at her last school.  So, she's not a new hire.  I guess they had to do a lot of shifting around since the head of the department retired.

And she has an HI teacher, and she said that she is wonderful and will be great with Harlie.

So, it appears that maybe I let my fears get the best of me last night and I don't need to do anything drastic.  And there is an HI program, they were just figuring out all the changes.  I am normally so much calmer than I was last night.  But, I have to say that my emotions are all over the place right now.  At this point I just need school to start already so I can get over this "hump."

The screening itself didn't go so well.  She wouldn't write her name, or answer questions about what shape was what and barely did the abc's in sign.  I should have realized it was doomed from the start...

Both Harlie and Cooper have been fighting some sickness for a couple of weeks.  Harlie actually started to get sick right before Tom's reunion and our trip out of town (which I still haven't written about or posted pictures - soon).  Harlie went on antibiotics and got better.  A few days after the last dose, she started to get sick again.  And Cooper's been coughing something terrible for the whole time, too.

They were both at their worst on Sunday (Sunday night was AWFUL and I only got 3 hours of sleep), so first thing Monday morning, I called the pediatrician.  They were booked, but squeezed us in at 9:40.  We had an appointment with the supply company (who sends a respiratory therapist to our house once a month to see Harlie and check her equipment) at 9:30.  And we had to be at Harlie's school at 11am.

So, I called the supply company and told the person who answered that I needed to reschedule our morning appointment for the day.  She transferred me to someone's voicemail.  I left a detailed message to NOT send the RT at 9:30.

As we were getting in the car to go to the doctor's appointment, my doorbell rings and it is the RT and a trainee from the supply company.  Of course, they didn't get my message.  When I told the RT, she said that the person I left the message with is on vacation this week.  Seriously?  That moron sent me to a person's voicemail who is on vacation to deal with rescheduling an appointment for an hour away?  Geez.  And it didn't help that his voicemail message did NOT say he was out for the week.  Grrrr!!!!

I told her we were leaving, she could check Harlie really quick while I got Cooper in the car and then she would have to check the equipment after we left.

Oh, and I forgot to mention that Murphy had a friend sleep over Sunday night and they were running around.  And my niece (thank God for Maggie!) came to stay with the boys while Brandy and I took Harlie and Cooper to the doc.

Oh, and I couldn't find one of my flip flops.  And that really ticked me off because I am CONSTANTLY picking up everyone else's freaking shoes and putting them away (including my own, of course) and now it's MY damn shoe that's gone missing.  Where's the justice I ask???

So, I run and put Cooper in the car and of course they parked in the driveway.  Behind me.  So I have to go tell the RT to move it.  Seriously - the house was CRAZY and this poor new trainee was just looking around.  The RT said that she warned the new girl that it was organized chaos.  I wish I could agree with that.

Luckily this RT has known us for a long time and is really nice (she's been coming since Harlie was a wee babe) and she was fine with staying after we left to do the equipment check.  And while I was running around wrestling Cooper to put his shoes on and continuing to look for mine - I told her to please check Harlie's pulse ox cord which is fraying and probably needs to be replaced.

We finally get in the car at 9:38 - and there is NO way we are going to be at the doc's office in two minutes.  So, we're late.  Luckily this doc's office is awesome and goes out of their way for us so they were very understanding.

By the time we get back into a room it is 10am and it doesn't look like we're going to be on time for the screening at 11am.  So, I ask our nurse if there is any way possible to get us out in time.  Which I feel awful asking for since I was LATE.

So, doc looks in Harlie's ear - no big deal.  But as soon as she sits up blood is pouring from her ear.  This is the second time that's happened after just looking in her ear.  I mean, I get that she bleeds easily (since she's on aspirin daily, which is a blood thinner) but what is causing the bleeding?  He said he didn't see anything in there and he didn't feel like he scraped her or anything.

So, we wipe her off and with four prescriptions in hand, go running out the door.

We rush home, drop Cooper off with Maggie and the boys and rush to the screening.  We were about 10 minutes late for that.  I take a deep breath and wait for her teacher.  I turn around and look at Harlie and her whole right side of her face is covered in blood.  Nice.  She continued to bleed for an hour and a half!  Which means that her canal was full of blood - and she appeared to not be able to hear a damn thing.

Perfect!  UGH!!!!

Which is why the screening didn't go so well.  Oh, and she's sick.  And her tummy was upset and she had to go potty several times.  Those things didn't help.

And she was acting super shy with her teacher.  Which I totally understand.  There was a sheet and it had a Name: __________ slot and then some shapes and then the alphabet.  She saw the alphabet and when we asked her to write her name on the line, she started to write the alphabet on the line.

Then when she was asked "which one is the square" she pointed to the circle.  Now - I know how parents can be - but I PROMISE you - she knows her shapes!!!

Her teacher had her move next to her thinking that might help.  And when she pointed to a shape and said "what is this" Harlie signed square - but did it under the table.  Luckily this teacher is sharp and saw it and told us that she thought she signed it (she doesn't know sign - but has ordered a bunch of signing materials for the class and seems really excited about learning it).

Then, when Harlie signed the alphabet (the letters were not in order) she kept her hand on the table and barely moved her fingers.  It was as if she were whispering!!!  But in sign!!!  It was so interesting to watch!  And incredibly frustrating!!!

Luckily her HI teacher was there and she told the teacher that she knew that Harlie knows this stuff.  The teacher said that this behavior is completely normal - and I shouldn't worry.

Okay.  So, that was that.  It was noon and Brandy and I were pooped!  It was a crazy morning.  Then I took Murphy's friend home, fed Harlie, Brandy and I had lunch, and then I made some phone calls.  I tried to get an appointment with a local ENT to check out this bleeding ear situation.  But her next available appointment isn't until November 9th.  Grrrr.  So, I e-mailed her ENT in DC to ask him what he thinks about it.  I am just trying to avoid going there (DC) because Harlie would have to miss a whole day of school.  So, we'll see what he says and I'll go from there.

Tomorrow we are going to Northern Virginia for Harlie's appointment with her surgeon to see if she can stop wearing that back brace and resume normal activity.  My fingers are crossed!!!

Whew!  This has been a very long post!!!  If you're still reading this - you are a good person.

Thank you!
~Christy

Interesting day.

Today was a great day for Harlie at camp.  This camp was two weeks long, and the last day is tomorrow (Friday).  The kids and staff have been GREAT with her and I really feel that it has been a wonderful experience for her.  Yesterday (Wednesday) she was all hot to trot to get out of the house.  And it wasn't even 9am yet.  We had to keep on telling her we had to wait.

When I picked Brandy and Harlie up today, Brandy said she had a great day.  They had a "field trip" to the library, which is right next door.  Brandy got some video (which I still need to upload) of Harlie dancing the hula with some friends.  It was so cute to see her having fun with girls!!!  Yay!  She's socializing and having fun with her peers!  Hallelujah!

And another thing that I thought was funny - Harlie picked out her own outfit today (a dress).  And the two girls that she was dancing with have the same dress and have worn it to camp.  And they've commented that they have the same one.  I wonder if Harlie realizes it too, and wanted to wear it because of that.  Let's just go with that.  Because it would be pretty cool if she was influenced a little by her peers.  Maybe, just maybe that will happen with eating.

So, there is this one boy who apparently loves Harlie.  He sounds like he's a pretty funny kid.  One of the first days at camp, he went and sat next to Brandy and said, "So, what's new with you?"  So, today when the staff told him to do something (like, "E, eat your snack.") he said, "Wait! I just want to talk to Harlie's mom!"  He clearly thinks Brandy is her mom.

And then he said to Harlie, "I love you, Harlie.  Even though you held us up."  He was referring to how she was pretty slow walking to the library, even though she didn't technically hold them up.  Apparently he was waiting for her.

And then later he said, "I still love you and I'll always love you."  Oh, this kid is cracking me up!

Brandy said that there is another little boy that really likes Harlie, too.  Today one of them (E) was the line leader and the other boy was the caboose.  They both called Harlie to stand next to them in line.

I can tell you two things:

1.  I would never have guessed in a million years that she would have a boy telling her he loves her at this age.

2.  My heart swells at the thought that these kids have grown to love her over the period of two weeks.  I know how awesome she is - but I wasn't expecting for kids her age to realize it.  Tears of joy, my friends.  Tears of joy.

Tomorrow they are having an ice cream party during the last hour of camp and families are invited.  I can't wait to talk to these kids moms to tell them how great their kids are!

Then, in the afternoon, Harlie's new elementary school had an ice cream social for rising kindergartners. It was held in the gym so it was super loud.  Which meant that you couldn't hear Harlie's communication device.  And she wasn't feeling social, at all.  So, that was awkward.

And even though I got to hear how loved Harlie is earlier today - it was STILL so incredibly hard to see how other kids look at Harlie for the first time.  It's not that I blame them.  They've never seen a trach before - they have no idea what it is.  Her eye is probably something they notice pretty quickly.  They just need a moment to take her in - and I get that.  But it is STILL so hard to watch.  And I don't think she notices that yet.  How is she going to feel when she sees that reaction, too?   I am so afraid of what that will do to her.

Anyway, some moms organized a group of older elementary-aged kids to go around and introduce themselves (how cute is that?!) and it was really hard (emotionally for me, I mean) to have to tell them what she was "saying" since they couldn't hear the device.  I had to say, "She just said her name is Harlie."  And something about that just made me want to cry.

And then I met Harlie's teacher.  And tears started to well up - and I had to choke them down.  It was all just so real.  So scary.  And it breaks my heart that I don't know if she's excited about kindergarten or if she even knows what it is or that she's going there this year.  And I thought to myself - how many conversations am I going to have with this teacher (who is apparently super awesome - seriously, I've heard nothing but great things about how great of a teacher she is) and what are those conversations going to be like?  Good?  Bad?  Ugh.

I just can't believe that she's going to go to kindergarten and I can't believe that she's almost FIVE years old.  I have been thinking so much about the past five years and all that's happened.  All we've been through.  And all the people that we're going to meet that have no idea.  There's such a comfort with being around people who know - people who get her - and me - without me having to do anything.  And I just feel like we are so vulnerable now.  It's weird.  And scary.  And I guess I'm thankful that Harlie doesn't feel any of that yet.

I introduced Brandy to her teacher and we talked briefly about where to sit Harlie.  Her teacher told Brandy that they have a spot all ready for her (Brandy, I mean).  I can't remember if I told you or not - but this school has "pods" meaning that you walk through one door, into a big room - and off that room are the doors to the kindergarten classes.  So, if Harlie is sitting close to the front of the room, Brandy can be in the outer room - still able to hear and see her - but not be right on top of her.  And she said that she saw the book about Harlie (another post, sorry!) and it all just made me think about how much work and effort so many people have to put in for Harlie and for us.  I'm so thankful for all of you that go out of your way for us - but I can't help but wish that no one had to.

And then, a mom came up to me to introduce herself.  She said her son had introduced himself to Harlie earlier and that he went to her and told her there was a girl with a hearing aid, like his sister.  So, we started talking about her daughter's hearing issues - when the mom said that her daughter has Goldenhar Syndrome.  Whoa!  Say what????

Her daughter goes to the same school, but she's going into third grade.  Her daughter has the same ear as Harlie's left one and she wears a BAHA (bone anchored hearing aid).  But she's not trached and never was.  And she eats and talks.  I hope they get to meet!

Anyway, after less than an hour, Harlie was ready to go.  I think it might have been a little loud for her comfort.  And probably a little too socially overwhelming.

Well, that's it for now.  More later!
Thanks!
~Christy

Brandy's Anniversary

As of February 14th, Brandy has been with us for FOUR years!  I can't believe how lucky we are to have such great nurses.  Home health is NOT known for caring, reliable nurses.  In fact, I hear horror stories all the time about abuse, neglect and criminal activity by the very people that are supposed to be taking care of special needs children.  That is why when the doctors told me I'd have to have home health nurses I said, "Um.  No thank you."

Harlie came home on November 2, 2006.  By December, I realized I needed help.  Not wanted help.  Needed help.  I called every agency on the list provided by my Medicaid case worker.  Out of all the phone calls, I spoke to only one helpful, courteous and nice person.  I chose his agency.  He sent a nurse out and she started working some days, and some nights.  She was okay.  But it was SO scary to put my precious, medically fragile child in her care and then leave the house.  With no surveillance!!!

She didn't stay long.  I went Christmas shopping one day and when I came home she had not fed her at all since I had gone.  She was in desperate need for every calorie (at that time she was 11 weeks old and still only weighed 7 pounds!!!).

I called and told them not to send her back.  I interviewed several after that, but none of them were right. Or even close.

Then, a friend of ours spoke to his friend - a nurse - about us.  She called, we spoke, I liked her over the phone and she came over.  We clicked!  She was hired and started on February 14th, 2007.  Ahhh.... and now she's a part of our family.  Lucky us!

And she's willing to do the hard stuff, too...

She loves Harlie and Harlie loves her.  Our lives would not be the same without her.

So, thank you, Brandy!  Happy Anniversary (over two months late)!
~Christy