Monday, December 24, 2012

Another Random Post

Since it's been so long since I posted last, this post will be very random.

Harlie will have her second stage surgery for her bone anchored hearing aid on February 12th.  It will be done at MCV in Richmond.  I really cannot wait to have this whole thing done.  When she plays at home her headband gets all askew, and then the hearing aid starts buzzing (feedback, probably because there's too much hair in the way).  It really will be so much better when it can be exactly where it's supposed to be and stay put!  I think it needs to heal for about six weeks before we can use it though, so we're looking at the beginning of April.  Whew, seems so far away still!

Harlie's School Stuff
Harlie is doing much better in school this year, than last.  They have been working on the AT family (sat, cat, mat, etc.).  That took some time, but I think she got it!  It's hard to tell because she can't say the words clearly enough that you always know what she's trying to say.  But, then they introduced the AN (man, fan, can, etc.) and AP (map, cap, lap, etc.) families.  Talk about frustrating!!!  For some reason, those are really difficult for kids with hearing issues.  And when I was working with her, she really couldn't hear the difference between man and map.

I spoke with her speech therapist about this last week.  She said that she has no frame of reference because she can't pronounce it herself.  She told me that kids who pronounce a W for an R (like Cindawella) will often write a W instead of an R because that's what they hear in their head when they say it.  Since Harlie can't say it, it's difficult for her to hear it in her head, you know?

It's quite overwhelming.  And I can't help but wonder what this means for her future schooling.  Harlie's cognitive ability is normal - but information has a difficult time getting in, and she has a difficult time getting the information out.  I owe it to her to do whatever I can to help her keep up with her peers.  But, I just don't know that I can do it all.  She would benefit from private speech therapy every day.  But, not only can we not afford that (it's about $100 per hour) I could never get that kind of time from a speech therapist (nor do we have that time in our life, either).  I would also like to get more academic practice and exposure in her day - but she's still just SIX years old and she gets TIRED after working hard for a few minutes.  I don't think I can fit more in her day.  Not to mention that Murphy has been taking up a lot of my time after school with his homework.  Third grade is the first year of real grades and he doesn't really care.  He's a bare minimum (or less even!) kind of kid when it comes to school work, like one word answers, instead of a full sentence (which always costs him points).

I know so many moms want to make me feel better about how hard it is to get a child to learn and keep up.  But, it's very DIFFERENT for Harlie.  Unless you know all I know, you just don't get it.  For example, she is six years old, and we are still having to ask her several times per incident to use three and four word sentences like "I want movie please."  In fact, I don't think we've even discussed teaching her to ask for a movie versus her saying "I want."  Until we get the I want on a consistent basis, I don't know that we can add in a "May I?" or Can I?"  Now think about what the typical six year old says and how much they talk.  Yes, Harlie is very different and it makes me very sad and scared of the years to come.  How in the hell is she going to keep up?  Well, she's not.  And that makes me sad when I know that her cognitive ability is there.

I volunteered in her class on Friday for their winter party.  I spoke with her hearing impaired teacher and we are having a meeting the week we get back to school to go over her communication modality. We've tried focusing on her verbalizations - but she just can't do it enough for anyone to understand her.  And she said as the material gets harder it's going to get very difficult for her to test and assess her when Harlie can't answer questions and tell her what she knows.  We've got to give her another way to let us know what she knows.  And I think the answer is going to be the communication device.  So, her HH teacher, her school ST, and the person who got us our communication device is going to meet to figure this out.   I think I'm going to have to learn a lot more about how to program the device and add photos, etc.  Because we are going to have to start focusing on it.  It's time consuming, but I don't think we have a choice anymore.  She clearly is capable of using it.  She will remember where a word is even when it's been weeks since she's used it.  Unfortunately, it's not going to be easy to make her to use it all the time, because not everyone knows how to or has the energy to make her.  Somehow, I have to get everyone on board (both her parents, her teachers, her nurses, etc.).

Feeding Therapy
Well, we've worked feeding therapy back in our schedule.  We see Allison every other Tuesday morning.  I hate that I have to take her out of school for it - but I believe Allison is worth it - and so is the importance of her learning to eat.  Last time we saw her she started working on getting Harlie to bite down (three times in a row) on a piece of puffed corn that was wrapped in a piece of fine mesh.  She's not ready to handle solids in her mouth yet.  It is amazing how complicated eating is when you don't get to do it as a baby.  All of her mouth muscles do not know what to do anymore since they never learned.  And now they are all weak (especially her jaw in general) from not being used the way they are supposed to.  Plus, her mouth is crazy, so that doesn't help.

I remember when Harlie was a little baby.  I used to tell myself that by the time she was ten, all of this would be behind us and it would be like it never happened.  HA!  But, I guess I had to believe that in order to get through that time.  She's six now.  And although I know a lot can happen in four years, I don't see her eating all foods as if nothing ever happened.

Eating is another thing that moms will try to make me feel better about by telling me how hard it is to get their normal kids to eat.  I have two of them myself, so I know.  And it is NOT the same.  It's not even on the same planet as getting Harlie to eat.  Her jaw currently doesn't have the strength to bite through a cheese puff.  Unfortunately, there's no feeling better about that.  It's just something we have to get through and continue to hope for progress.

To be honest, it's been really hard to blog about my life when I think about all the parents of the children of Sandy Hook Elementary School (and everyone else involved).  It's really hard to talk about what's difficult/good about my life, when I think of what those parents are going through right now.   It's so incredibly sad.

Christmas Spirit
This one is not an easy one for me to write.  But, it's the truth.  And I'm hoping after I write this, I will feel better.  The Christmas Spirit has eluded me this year.  I LOVE Christmas.  But all three of my children have really been challenging for us lately.  And, Murphy and Cooper have driven me absolutely CRAZY.  I try asking/telling them to do what they need to do nicely, then I repeat myself.  Then I repeat myself a little louder and a little louder still.  Then I have to YELL.  For every single thing they are supposed to do.  Even getting them to hang up their coats takes an unusual amount of energy.  And multiply that with EVERY THING for all three, one of whom is non-verbal (who still needs help in the potty) and I never sit down!

Add my running in (which I have made a huge effort to do more of) and I am TIRED.  It has been exhausting.  We were going to take them to go look at tacky Christmas lights, but they were being so awful that night that we had to take that away.  And the worst of it was that they didn't even seem bothered by it.  And their behavior has made me not want to take them anywhere.  Like out in public.  We haven't taken them to go see Santa (they haven't asked, and there's really been no time - and again, that's out in public).

I've tried all sorts of ways to get the boys to cooperate - just a little even!  Even our Elf on the Shelf (Elfred) has failed to get them motivated to listen.  Maybe he's too lazy.  He should have left them a note or something.  Ugh.

Anyway, their behavior has been so crummy, that I think I'm still angry at them.  How awful is that?!  I just don't think I should reward that behavior with fun stuff.  We haven't made cookies.  Partly because of their behavior and partly because I can only get the boys half-way interested.  Harlie would not be excited about making cookies since she doesn't want to eat them.  She might help decorate, but that would be it.  So, I really don't want to do that because I HATE that she can't eat a freaking cookie.  So, that's more my issue, than the kids' fault.

I got a gingerbread house a few weeks ago.  It's still sitting in it's unopened box on top of the refrigerator.  I just don't want to do anything with them when they act like that.  It takes all the fun out of everything.  And I just don't have the energy for it.

So, it's now Christmas Eve and I feel like shit about everything.  Especially since I have my three children, all seemingly "healthy" and I am sitting here whining about their crummy behavior.  Not only am I thinking about Newtown, but I'm also thinking about all the moms that I know (through my special needs on-line support) who are missing their children that have passed.  And all the moms I know who are sitting in a hospital room with their sick child.  How can I sit here and feel the way I do???  What the hell is wrong with me?  I am normally SO much better at being positive than this!  And now I'm looking back, regretting the way I've handled things.

I should have written this weeks ago.  I just needed to write it to see it.  I just have to make the choice to be more fun - and inspire my children to want to make better decisions and want to listen.  Ha ha ha!  I know, I'm laughing as I write this.  But, seriously, I do make the choice (usually) to be positive in my life in general.  I just need to do the same thing now.  And I need to give them a consequence for not listening, instead of repeating myself till I want to cry.

Today, I think I might make them walk the dog when I get mad.  That way, the dog benefits, too.  Although it's rainy and yucky today.  Maybe I'll make them walk up and down the stairs.

Tom is on his way home now.  And I'm really hoping that he can bring some excitement and joy into this house.  On Saturday he went to Pittsburgh with some friends.  They went to the Steelers vs. Bengals game yesterday.  The Steelers lost and are now done for the season.  This means that Tom will shave his beard (or maybe he has already?).  We'll see when he walks in.  I'm looking forward to seeing his face again.  And I hope he arrives well rested and ready to parent!

We have been lucky enough to be invited to some great Christmas parties.  I will have to post pictures later because my laptop (with my photos) is currently broken thanks to the children.  Tom will have to fix it.  Considering my mood lately, I am very thankful to have these friends that invited us to their parties.  They were bright spots in gloomy days.  So more on that later.

Okay, I must go and muster up some fun in this house.   I have to let go of some anger and forgive my children more quickly when they completely ignore me and don't seem to learn from their mistakes.  I can do this, right?  Oh someone please tell me I'm not crazy, haven't lost it and that I'm not alone.

As always, thank you for reading and continuing to support me and my family in so many ways.  I do always feel better after telling you all my stuff.  :-)  My next post will be better.  I promise.

Merry Christmas and much love!
Christy xoxo

Sunday, December 16, 2012

Our Trip to Pittsburgh

On Friday, November 30th, we headed to PA to see Grandma, Pap Pap, and the rest of Tom's family.  The kids spent over a week counting down the days.  We rarely get to take a trip as a family - for FUN!!!!  So, needless to say, we were all really excited!  I think it had been four years since Harlie was there.  Awful!

We managed to get out the door on schedule.  Although we did forget to pack Harlie's formula, which forced us to turnaround and go home.  We were on our last few cans and limping until our supplies came in.  They were due to be delivered that morning and I had asked them to deliver them before noon so I could have what we needed.  Of course, that didn't happen.  And there's another problem with her not being on store bought formula.  Ugh!

Anyway, the car was packed (except for Rooney).  We left him with Brandy again.  I am so glad he is a good pup for her and Brodie.  Thank you Brandy!

We got on the road and proceeded to have to listen to, "Are we there yet?" about a trillion times from Cooper.  Oh, Lord give me patience!

We also passed a spot with a memory for us.  I'm laughing just thinking about it.  It is a two-lane road with double yellow lines (Rt. 17).  Apparently, there is a "Bump" sign (which Tom pointed out for me, by the way).  Many, many years ago (way before Murphy came along) we were headed to visit his family.  I had a Ford Focus at the time.  I was driving.  I did not see the "Bump" sign and if I did I clearly ignored it.  Right after that sign there are some railroad tracks.  Whatever.

When we drove over them, we totally caught air and both of us left our seats.  I think if memory serves, Tom even bumped his head on the ceiling.  I can tell you that I remember the look on his face like it happened yesterday.  Oh, it still makes me laugh till I cry.

I wish I could have seen what we looked like flying through the air from the street.  Oh, funny stuff!  Oh, here we are!

As Tom drove past the sign, he pointed to it and said, "What did that sign say?  Oh, never mind, who cares?  We're making good time.  I'm going to speed it up a little."

LOL!  I am NEVER going to live that one down.

We had a great trip.  Although the first night we were there, Harlie went to go wash her hands and somehow lost her balance on the step stool.  She did a face plant into the vanity and knocked out a tooth.  Oh, there's something about her losing her teeth in traumatic ways that just bugs the ever loving crap outta me.  It was a baby tooth, thankfully.  But, since she's quickly running out of baby teeth, and is still just as unstable as ever, it's really only a matter of time before she knocks out a permanent one.  Her poor mouth!  Her dental future is a scary thing.

And you might remember that we were (and are still) dealing with her GI/constipation issues.  She's been wearing pull-ups for a few weeks now.  This is a time when I am thankful for her marching to her own beat - because she doesn't really care about wearing them.  Whereas most girls her age would definitely fight wearing pull-ups (after all, they're for babies!).  She seemed to be pretty good for a few days, so when we were there, I asked her if she wanted to wear underwear.  She said no and pointed to the pull-ups.  I didn't listen, of course, and put underwear on her.  That was a mistake.  She was right.  I was wrong.  I think it's time I give her a little credit and start listening to her more.

We celebrated Christmas with his family.  They are all so good to us!  Harlie loves her new scooter that Grandma and Pap Pap gave her.  Although as of now she's only ridden it in the house.  I must say that my stomach tightens when I think of her going down our street on it.  Luckily, I don't think that's really a goal of hers right now.

Tom took Harlie for a ride on the four wheeler and she loved it.

 Cooper did, too.

But Murphy did not.  Hence why there are no pictures of him on it.  Murphy did love one of her dogs, though.

Kristie (Tom's sister) and me.

Me and Tayne (Kristie's daughter).
The next day we headed down to Pittsburgh to take the kids to Lego Kids Fest.  That was great.  While waiting in line for them to open (they count down and shoot confetti into the air at opening time) there is a sign that suggests that you take a picture of your kids with your cell phone, just in case you get separated.  Pretty smart.

The kids loved it.  Here are a few pics...

Somehow, we managed to keep track of all three kids the whole time.  Although at times it was a little challenging.  Tom and the boys wore Steelers shirts.  Along with the rest of the entire crowd.  So, that didn't help much.  There was one area that was set up to build cars and they had race tracks for you to race them down.  All three kids loved that area.  Harlie could have stayed there all day!  It was a lot of fun.

After that, we had lunch with Tom's dad.  Then we went to our friend's house (we vacationed with them in Charleston, SC back in the spring) to watch the Steelers vs. Ravens game and stay the night.  We had a great time.

Then on Monday we came back home.  We heard "Are we there yet?" from Cooper a few hundred times, but considerably less than on our way there.  So, that was good.

We also decided on the way home that we really need to move forward with focusing on Harlie's communication device as her main means of communication.  While she wants to talk so desperately, and tries so, so hard... she simply cannot manipulate her mouth to be clearly understood.  I don't know when she'll be more understandable.  But, it won't be soon.  And trying to drive in the car, and figure out what Harlie is trying to say in the back seat is nearly  impossible and very UNSAFE.  She requires eye contact and time.  Two things you cannot give to a backseat passenger while driving.  It's so painful to know that she wants to say something, and you just can't figure out what.  If only she could talk - our life would be immensely better and easier.

When we got home, the kids wanted to ride their scooters.  So, Murphy looked for his helmet.  And that's when it hit Tom that Murphy rides his bike to school and we picked him up early on Friday - forgetting all about his bike in the bike rack at school!!!  OH NO!!!

So, they raced down to the school and found that the bike was gone.  :-(

While I know that we shouldn't have left it there (that was oh-so-stupid!) someone still took something that didn't belong to them.  We were just so excited to be leaving for a fun trip that we lost our heads for a minute!  Needless to say, Murphy was very upset.  And he rode his bike to/from school every day!  So, he really notices its absence.

But, one of Tom's friends and his wife, who are very kind and generous, reached out to him and said they wanted to get Murphy a new bike for Christmas.  I am constantly amazed by the goodness in people and how incredibly lucky we are to be surrounded by such good friends and support network.  And Murphy will be so freaking excited when he sees his new bike on Christmas morning!  I just can't say how thankful we are for these good people!!!

Okay, that's it for this post.  More soon!
~Christy xo

Wednesday, December 12, 2012

Another day gone crazy.

Oh, another day gone crazy.

Terri had a family issue today that she had to take care of, so she can’t work today.  Which means I had to take Harlie to school.  Of course, my day was packed already.  So whatever I had planned, can’t happen. 

Anyway, details on Rooney…

So, yesterday at 3:00, I noticed that Rooney had something in his mouth.  Upon closer inspection, I realized it was the cardboard from a package of Harlie’s hearing aid batteries.  I looked around and found the rest of the mangled packaging with one battery still attached.   There are six in a package.  I knew it was an unopened package when he got to it.  I looked around for more batteries and only found one.  So, that means that he swallowed four. 

I called the vet.  They told me to give him some hydrogen peroxide until he threw up.  So, I did.  And he threw up.  A lot.  I got the pleasure of going through it (while wearing gloves, of course) and found a few legos, the foil wrapper from a piece of candy, cardboard pieces and three already blackened batteries.  One was still missing.  I called the vet again.  They said to bring him in right then. 

I loaded the kids and the dog in the car and headed over.  When I was looking for a vet I called around to check pricing.  This vet was right in the middle – not the cheapest, but not the most expensive, either.  But, it’s biggest selling feature – it’s right across the street.  Can’t beat that!  And one of the docs owns five pugs himself.  No brainer. 

Anyway, I drop him off and go back home.  About an hour went by and they called me to ask for more information on the batteries.  What kind, does it have lithium, is there an emergency number, etc.  They said they’d be in touch.  They didn’t tell me about the x-rays.  I was afraid that he had only actually swallowed three and that meant that one was still lying around somewhere in my living room.  They are so tiny!  What if he found it later and ate it and I didn’t even know?!!?!  I searched the room over, but didn’t see it. 

Finally by 6:15 I had not heard from them.  Well, they close at 6:30!  What was going on?!  I have to say that I was really not that worried until then.  What if something bad happened?  So, I called and they said I could come get him and they would talk to me when I got there.  Whew!

When I got there the doc showed me his x-rays.  When he first got there, one was still in his stomach.  They gave him more stuff to make him throw up (and some special food).  He loved it.  And then promptly threw up another several times.  Oh, that poor pup!  But, it still did not come out!

So, they x-rayed him again, and it had traveled into his intestines.  Awesome.

Luckily, the batteries are not made with lithium.  She said if they were, they would have had to open him up right then to get it out.  Whew!  Can you imagine how much that would have cost?  Merry Christmas!  When they brought him to me, he sat down and looked up at me and the doc like, “What? What’s wrong?” Oh, too bad he’s not going to learn from this experience…

The doc said that they want to protect his esophagus, stomach and intestines from burning, so he’s on a special high-fiber food, and two different medications.  I knew it was bad when I saw that they had a little bag for me.  It’s never good to leave a vet with a bag of stuff.  

And $267 dollars later, I got to take him home.  He was on morphine (crazy!) so he was a little drugged.  We gave him a big pill that night (which he ate without problem, since he is not picky).  And he slept soundly all night. 


So, now I’m at school with Harlie.  She’s only going to get to stay for two hours, because I have an appointment I can’t miss.  Brandy is going to help me out for a few hours today.  Of course, I don’t have that shift change approved by the nursing agency yet.  I tried to call, but I had to leave a message and I haven’t heard back.  Which means I am going to have to call AGAIN when I leave here.  Yeah, it’s great to have another thing I have to worry about.  Thanks a lot nursing agency. 
All in all yesterday, not only did I spend a lot of time on the phone with different people trying to get this resolved, I also spent a good portion of the day thinking about it.  So, between the nursing crap, and the dog, how in the hell am I supposed to think about dinner? 

I really wish cooking and preparing for meals came easier to me.  But everything else in my life seems to trump that.  And I tell myself that’s okay.  But, then when Tom comes home and the house is crazy and he’s had a tiring day and he has to make dinner, I feel really bad.  And inadequate as a stay at home mom.   

Okay, must check on Harlie girl.  I will try really, really hard to have another update for you tomorrow.  I have a lot to share!


Tuesday, December 11, 2012

Nursing Woes.

I love it when I hear that some of you are worried and/or wondering what's going on when I don't post for a while. It gives me the motivation I need to make this a priority again.  And it means that I am loved and cared about. So, thank you!

It has been very difficult to find time these past few months.  Honestly, I feel like I am barely keeping my head above water.

I have so much to update you about.  But, I'll start with today.  It was kind of stressful.  I need to start with what happened a month ago.

Last month (actually about 5 weeks or so) I received a phone call from my nursing agency.  As of right now, Harlie qualifies for 10 hours of nursing per day, seven days a week.  Each nurse can only work 40 hours or less per week.  I have three nurses.  One works days for school, Monday through Friday (40 hours).  The other two work evenings and/or weekends when needed.

I also have like 360 respite hours to use however I want to throughout the year.  The only time I use it is if I go over the 10 hours in one day.  So, if on a weekday (when Terri has gone to school with Harlie) we have something to do, I get Dawn or Brandy to come over and respite hours kick in.  It doesn't happen every day, of course.

So, back to the phone call I received... I was told that due to billing issues with Medicaid, the nursing agency was no longer billing for respite hours, so I could not use them.  Now, I am still entitled to those hours - but the nursing agency won't allow my nurses to work them.

While this was VERY annoying, I had full faith that this issue would be resolved soon.  After all, a lot of families and patients rely on these hours.

Well, I've been busy, it's been crazy, and I kind of forgot about it.  But, we have a busy few weeks ahead and I need my respite hours to make everything happen (Christmas parties, shopping, scout nights, etc.).  So, yesterday I call the agency to see if the issues were resolved.

No.  Not even close.

Now I'm frustrated.  And I really don't think they understand (or care) how this affects us.  I need my hours.  Period.  She said she'd talk to the owner and get back to me.

So, I call my case worker with Medicaid.  I left a message.  In the meantime I'm trying to figure out a schedule with my nurse to work on Friday night.

I hear nothing back.  So, I call again today.  Both places.  My case worker with Medicaid is wonderful and she said, "Oh, no.  They cannot do that.  I'll call them."  Awesome.

In the meantime, my nurse said that she was told by the nursing agency that her hours have to be "approved."  WTH?  At this point, I've already figured out to move our plans from Friday night to Saturday night so I don't have to worry about the hours conflicting with Terri's.  So, I call the agency (again).  I talk to this guy who I've never spoken to before.  He said that they want their nurses to work "regular shifts" and he has to know where his nurses are and when they are working.  If I relayed the whole conversation, it would take me an hour to type it.

Here are the highlights:

If they work a shift that was not a shift he pre-approved, then they might or might not get paid.  Yes he said that.  Even if it is within my 10 hours I already am allowed to have.  WTH???  So, if our plans change at the last minute and she works 6 to 11 instead of 5 to 10, she might not get paid?  Are you kidding me???

Back to his "regular shift" comment.  Don't even!  You want your nurses to work regular shifts?  Well, guess what?  You don't always get what you want in this life, Mister!  TRUST ME!  I want a regular life, jack ass!  Cry me a freaking river.  I told him my life is not regular and it doesn't work like that.  And I said, "Isn't it about what the patient needs, not what the agency wants?"

He said that their nurses represent the company and that he needs to know where they are.  Um, they are here for 10 hours a day.  I told him I brought you my nurses!!!  They went to your company to work in my house, with my child.  For SIX years!!!  I think we have it worked out.

I told him that this policy does not protect me or help me in any way.  It is a burden.  I cannot be worrying about calling him every time my plans change.  Our life is hard enough - why are you making it harder???  And (I actually said all of this by the way, I'm quite proud of myself if you want to know the truth) you do realize that I am going to have to look into other nurses agencies, right?  Then he said, "I understand."  WTH???  For real?

The last thing I said was that I did not detect any amount of caring or concern from his end of the conversation.

My only guess is that this company is trying to phase out the Medicaid cases (probably because they don't make enough money) and is doing their best to force me to leave.

While I already started the process of finding another agency (and I know where we are switching to) it will take a couple of weeks to go through the process of hiring my nurses.  UGH!  Which leaves us SCREWED for the whole month of December.  The WORST month of the year to lose any hours!

I am beyond upset and angry.  He made me want to cuss like nobody's business.

And the worst of it????  The worst of it is that I can't do anything rash.  I have to stay calm and deal with this crap.  You know why?  BECAUSE I FREAKING HAVE TO, that's why.  I NEED them.  I need my nurses.  I need them in order to live my life.

And, you know what?  It totally sucks to be a mom and know that I need other adults to help me life my life.  Not just help every now and then.  NEED them to LIVE.


I am a strong, independent (well, I can't cook, so that's kinda bad), do-er.  To NEED this "service" is simply heartbreaking.  And it's not just about me.  It's about my sweet little girl.  My sweet little girl who didn't ask for any of this.  Ugh.

Okay, the day got better with an emergency vet appointment for Rooney.  Fabulous.  He's fine now.  Whew!  But I promise I will fill you in with all the details tomorrow.

Thanks for checking on me and thanks for reading my ranting!


Hardware Removal Day

I'll talk about pre-op day first, then I'll blog about today... Yesterday we did the whole drive through testing thing.  That wa...