Surgery, take 1.

So, another long break between posts.  So sorry.  I wish I could say the long breaks mean we are way too busy having fun.  While we do try to have fun at every opportunity, it is just that life has been so busy with... stuff.  

I'll just focus today's update on Harlie, medically.  

The day after my last post (over two months ago!) Harlie developed a growth of some sort in front of her right ear.  I sent a text with a photo of it to Dr. Strauss (the plastic surgeon here locally).  He said he needed to see her.  So, we went to see him that afternoon.  He poked it and tried to get a culture.  He didn't know what it was.  This growth has a mind of it's own - it bleeds, drains some kind of fluid, swells, peels, turns red, turns black, etc. And it changes so fast. I took a picture of it at 4pm one day and by 7pm it looked completely different. Watching it has been an absolute ball. And the wound care? So fun! 

She has not been able to wear her hearing aid on her right side since her surgery in April. This has been a total drag. And I hate to complain about how my daughter's hearing loss affects me/us.  But, well, that's life, folks, so I'm doing it! 

Her in-the-ear hearing aid (versus her BAHA on the other side) connects to her tablet via blue tooth, so she can turn up the volume on her tablet to her heart's content and we don't have to suffer hear it. So, no hearing aid = no blue tooth = REALLY loud volume - for all of those around her. Oh, the sacrifice! Not to mention that we have to repeat ourselves, like a lot. I mean, that's already a given with kids, am I right? Now throw in some good hearing loss and well, that takes it to a new level of annoyance. And we try SO hard to not show her our annoyance. I mean, she can't help it, after all! I joke, but we aren't monsters! Not long ago, after I said a bunch of stuff to her, she looked at me with those cute little eyes of hers and an evil little grin and said, "I wasn't listening, can you repeat everything you just said?" 😑 That little jokester! I tell you, she is funny!

I scheduled an appointment with her audiologist to have her test her hearing and make a new mold for her hearing aid. I can't remember if I mentioned or not that the shape of her ear must have changed because of the jaw surgery. Since the temporal wall is shared by the jaw and the ear, the jaw surgery affected her ear shape.  I'm guessing here, though.  Because it is hard to tell if it was just swelling for so long - or if it changed for good.  We will know when we can finally try to put her hearing aid back in.  We haven't been able to because of that growth and because her ear canal has been full of debris.  And because that growth has made her whole ear really sensitive to touch. 

Anyway, her audiologist was unable to do any testing.  For one, she cannot wear the headphones in the booth because that growth is in the way. Also, her ear canal is full of debris.  So, her audiologist had a nurse practitioner take a look at Harlie while we were there.  The NP went and got a doctor (I think she told me he was an adult plastic surgeon) to take a look.  He also didn't know what it was. He said he needed to poke it to see what was in it. Here we go again (never got any useful information from the last time). Since Harlie was on her tablet, he said he could do it right then while she was distracted.  Haha! I love it when people don't realize how aware and smart Harlie is. 

So, he went and put gloves on and hid the needle behind her head.  Harlie turned towards him and said, "What are you doing?"  I think he was surprised. I'm guessing he knew he couldn't lie to her, so he said something like, I need to drain this growth, just look at your tablet, ok? Then she said, "Let me guess, you have a needle."  Haha!  He tried, but she wasn't having it. So, he grabbed some scissors and clipped it really fast. It only bled. In summary, he wasn't sure what it is but said it has to be removed in the OR. 

I ended up emailing her surgeon in Boston and sent him some photos and brought him up to date. At this point, three plastic surgeons had seen it. I asked her surgeon who should remove it - plastics or ENT?  Since we need to get the debris out of her ear canal, I sent photos to her ENT in DC.  He can remove the growth, clean her ear canal and do a bronchoscopy to see if anything has changed in her airway since her jaw surgeries. Sounds like the most efficient start. So, that is scheduled for Monday, August 2nd. 

After getting the date (like a month ago), her whole right ear got red and angry.  I sent new photos to her ENT and he put her on antibiotics.  While on these ABs, she developed a pocket of stuff on the left side! Now the left side keeps filling up with fluid (not blood) and draining some on it's own. More wound care, which got old like four years ago.  

Today is Saturday and her surgery is Monday.  She woke up this morning with a new pocket of fluid under her chin!!!  Are you kidding me?!?!?  This is the worst game of whack-a-mole, ever!

We have to look at her spots several times a day and we have been doing this for months now. The other night I looked at her left side and sighed.  She asked, "How does it look?" I (also not wanting to lie to her) told her it was swollen again.  Then she exclaimed, "OH, C'MON!"  She cracks me up.  She is so funny, even when things suck.  I have no idea where she got that kind of sense of humor.  ;-)

I have attempted to write this post several times since last week and I keep getting interrupted. Today is now Monday, and surgery is today. 

I have had numerous conversations with nursing staff from Children's National in the past week. Two pre-op nurses called to go over her history, etc. A nurse called me specifically to ask me when her Covid test is and that it is my responsibility to bring proof of a negative result. That conversation got old a year ago. I HATE being talked to like I am an irresponsible idiot. But, that is what everyone assumes now. We are all idiots who are a danger to society. 

Lastly, I got the nurse who called to tell me what time Harlie's surgery is (that is usually late in the day, the day before surgery).  I can't believe it, but they told me that she was scheduled for 5pm! Wow. Never has she been that late. And, honestly, I was surprised because it was her ENT that said he would never do surgery on her in the afternoon again. That was after he ended up having to do an airway reconstruction (called an LTR, which is a HUGE deal) at 3pm. 

So, I asked her if she was sure.  She said yes, Dr. P has a busy schedule that day.  I told her I was just really surprised, I didn't think he wanted her to be late in the day. She apologized, but what could I do? I was like, well, okay then. Maybe he feels confident that this won't turn into something more serious. Okay. Plus, she said Harlie is 14 now. And while I certainly know that's true, it doesn't mean that she acts like a 14 year old. And by "acts" in this sense, I'm talking about her medically. I just don't think lumping her in with every other 14 year old makes sense. But, blanket policies that disregard the particulars (and cater to the healthy and typical) are all the rage now.  

Take, for example, the NPO (nothing by mouth) instructions prior to surgery... the nurse calls and tells me she needs to be NPO after midnight - for a 5pm surgery time. That's 17 hours, people. Dumb. Totally dumb and completely unnecessary for her to go without eating for 17 freaking hours. This isn't a colonoscopy! Not to mention the complete disregard to her heart defects.  Her cardiac situation and passive blood flow requires that she stay well hydrated. Thankfully, I'm NOT an idiot and I know not to adhere to those instructions. So, I told her, sorry, I'm not doing that.  She is g-tube fed, and is tube fed liquid formula and she needs to stay hydrated. So, she tells me to stop her feedings 9 hours before surgery and I can give her clear liquids like GINGER ALE up to two hours before surgery.  I'm sorry, did I hear her right?  Did she really just tell me I could put ginger ale in her g-tube?!  Who does that?!  Why would someone do that?! I really don't think anyone would do that. Ugh, this is a major problem with over instructing people - they stop thinking for themselves.  She's on auto-pilot and isn't even listening to parents while she is doling out pre-surgical instructions!  

Anyway, earlier that day, Harlie had to have a preop check up and a covid test. I was stressing a little bit because the hospital requires a covid test to be done within 72 hours of surgery. This means that we had to do the test on Friday. But, that means that I can't have proof of results ON PAPER until Monday morning after the office opens at 8:30am. I say this because that's what the lady told me - that it was my responsibility to bring proof of results - on paper - with me to her appointment. But, without knowing what time the procedure was, how could I promise that? I mean, if her surgery is scheduled for 7:30am (which is the usual time for Harlie) then that means I have to arrive at the hospital at 6am. On a Monday. Which means I have to leave my house at 4am. So, how can I get the paper during the weekend when the office is closed? And, for some reason, this office will not email me the results.  This was a problem when I realized that I forgot to go pick up the paper for Cooper's negative results when we were driving through NEW YORK on the way to Maine for summer camp. UGH! For real.  Luckily, they said they would fax the results to the camp office. Regardless, that isn't going to work when the hospital needs the proof at 6am.  

My other option was to drive her to the hospital in DC and have her tested there.  So, I would take a day off from work, drive at least two hours to get there, get a 10-second swab, then drive at least two hours back, pay for gas, etc.  Um, no, thank you. 

So, when I was told that we didn't have to be at the hospital until 3pm, I was like, well, at least that solves the covid test problem. I can easily swing by the office before leaving my house at 1pm. Fine. 

We had a regular morning, worked out and I took my time, walked the dogs, and then got ready for the drive to DC. I packed an overnight bag (just in case) and started to load the car when I got a phone call at 12:30 from the hospital. I saw the number on my phone, and I was like, that's weird. It can't be good that they are calling me. 

Hello?
Hi, is this the parent of Harlie?
Yes, this is Christy. 
Hi, well, Dr. P wants to know if you can come next Monday instead of today. He doesn't want Harlie to be such a late case. 

Great. Took the day off from work for nothing. Awesome.  I also rescheduled her GI appointment and canceled her teacher today.  Apparently, they were supposed to tell me on Friday. 

Now I have to do all of that again - the covid test, taking a day off from work, canceling her teacher, and her speech therapy next Monday. Except now I get to worry about that freaking piece of paper with her covid-negative results because she said she will be an early case.  I'll have to call her doc tomorrow and get something figured out. I don't want to deal with that today. I'm taking the rest of the day off. 

But, you have to take the good with the bad. And I love Dr. P.  And one of the many reasons why I love him so much is that he isn't even scheduled to be in the OR next Monday. But, he is going to go in JUST FOR HER because he does not want her to go in to the OR so late in the day. So, he must remember that day three years ago as much as I do. Man, there is something so great about that. 

Oh, before I go, here are some random pics since I haven't shared any in so long...

Harlie reading to Mabel.

Harlie at the paint store.

Harlie's growth-thing at different stages...

The growth-thing on the left side.

Harlie checking out her bird book on the deck the other night. 

Harlie at speech therapy, sporting her speaking valve.

She's really been a super busybody lately. She must be feeling better and her blood levels must be getting back to normal. She definitely has more energy now. 

Okay, that's it for now. I have so much more to share, but I will have to share later. I'm going to take advantage of this impromptu "free-time" and take Harlie to visit my mom. As always, thank you so much for caring about this crazy girl of ours. We do love her so much, and we appreciate that so many of you love her, too. 

Much love,

Christy xo

A little of a lot.

Since it's been so long since I've updated you on Harlie, I'll start there.

Her heart

It has been over a year since her last heart cath (it was in December 2013).  I feel like a lot has changed since then, which is good. She had her pacemaker adjusted and she's been able to spend some good time on room air. I'm hoping that means good things for how her lungs are doing.

So, right now I'm working on getting a date for a heart cath soon. I didn't want to have to worry about it with our Disney trip in December. I thought it wasn't smart to get it done before - what if something happened during the cath that would've prevented her from going or what if we got bad news?  So, we decided to wait until after the holidays.

It's interesting to look back at my decisions sometimes. In 2013, I wanted her to have the heart cath, despite the fact that it was done on December 13th. I could have thought it was too risky to go into the hospital so soon before Christmas - what if something happened during the cath that would've prevented her from being home for Christmas or what if we got bad news? Instead, I had hope and thought, what if they can do something that could get her off the oxygen before Christmas?

I think I'll always have a glimmer of hope.  But, I also think after eight years of reality slapping me in the face, I can't deny that things don't always work out the way I want them to.  Let's just say that I've gotten a lot of practice in learning to live with disappointment.

Her back

Anyway, another area I need to work on is her back.  The last time we saw her orthopedic surgeon (a year or two ago, I can't remember) she said that when Harlie complains about back pain regularly, we need to do something. She really did not want to do another surgery.  She would rather wait until she grows more (like when she turns 12 or so). But, if Harlie is in constant pain, waiting wouldn't really be an option.  The pain is most likely due to the area in her spinal fusion that became infected. The infection forced her surgeon to remove the bone graft and didn't allow for optimal healing.  Doesn't this just look like it could be painful?

It's so gnarly because after it got infected, they had to put a wound vac in it for several days.  And she had to go into the OR several times for debridement.  It was a horrible time.

Anyway, at this point, she complains about back pain almost every single day.  Some days are really bad and she might tell me that her back hurts ten times. For a while I asked her if we needed to go to the doctor and she would say no. Until one day, she said yes. That means she's pretty serious.

Then, when we were in Disney, I noticed that she would sit in her wheelchair while leaning to her left.  And, about six months or so ago, she stopped using alternating steps while going up or down the stairs.  We worked really hard in physical therapy and at home to remind her to take alternating steps.  And for a while, she would point out to me when she was doing it without being asked (so she was proud of herself).  But then it just stopped.  And she absolutely refuses to do it.  Period.

So, something is up. Darn it.  So, I'm working on getting that appointment scheduled, too.

Sleep Study

Another thing I need to think about is getting a sleep study date.  We've been toying with doing this for years and have yet to accomplish it. I'm pretty sure that my reasons for/against a sleep study are more complicated than I would like them to be.

We've been able to cap her some lately, which is nice. And the other night she asked to sleep with her trach mask around her nose and mouth instead of it being around her neck. I took advantage, and switched the trach mask for a face mask and capped her.  That way she would get what she wanted, and oxygen, too.  She fell asleep like that just fine and maintained good sats for a while.  But, I had a hard time sleeping knowing that she was capped without proper monitoring. So, around 1am I got up and took the cap off and returned her to a trach mask. She was making some noise (almost like snoring - definitely some obstruction noise), but her sats were at 84 instead of 91. Not sure if that means anything really. I just don't know.  I suppose we should do it, just to get some sort of data, if nothing else. But, I'm just not excited about anything having to do with it.  And decannulation (getting the trach out) isn't that simple. She has so many other issues.  I'm just afraid (among other things) that it might complicate another thing or that it will be temporary.  Anyway, far too deep of a discussion for today. So, as usual, I put off the decision for another day.

Hearing Aid

We finally got in to see her audiologist a few weeks ago.  We haven't seen her in far too long. But, as it turns out, it's been FIVE years since she got her very first hearing aid.  I can't believe it.  It almost feels like it happened yesterday. Anyway, she's due for a replacement.  Apparently they don't last much longer than that.  So, she got a mold of her ear and got to pick out another aid.

She puts this foamy stuff in her ear and lets it harden.  Then pulls it out to send it to the company to have the ear piece made.

She picked out a pink hearing aid (the one she has now is purple).  It should come in soon.  Oh, the things we find exciting!

Nursing

Another new thing for us is our nurse, Terri is back.  Harlie was happy to see her.  Terri hasn't worked here in a little over a year.  We missed her. We also made another change and let the nurse that was sharing the week with Brandy, go. I can't go into details, but I just felt like I had no other choice.  We've been so incredibly lucky with our home health nurses that I've never really felt like complaining about having nurses that much.  I mean, the requirement of needing them totally sucks and I don't know a soul that would argue with me there.  But, we've had such wonderful people that I've always felt good about it. They allow me to live as normal of a life as possible and I am eternally grateful for that.

But, home health nursing is a weird arrangement. The nurse is employed by a company. But they work in a patient's home. So, as a patient's mother, I am not their boss.  But, I have a say in what they do with my daughter. It is such a gray area. And when you want to make a change in nursing staff, you tell the agency, who then tells them.  There is no notice given to the nurse.  Which stinks for them. I shouldn't have to explain that it's just not smart to give a nurse notice. It puts the patient and patient's family in a vulnerable position.  But, typically in this business, there usually is another family who needs help.  It always seems like there are more patients than there are nurses.

So, making this change back to Terri wasn't as well received by one nurse.  And she sent me a horribly ugly message a couple of weeks later.  It was upsetting to read. It's clear she didn't like me and judged me poorly in a number of ways.

Think about that for a minute.

Someone was in my HOME for over a year, and was a caregiver to my child with limited communication abilities (whom I love more than words could convey) - and didn't like me.  Judged me.  Doesn't that sound horrible?  One should never have to have someone like that in their home.  I feel so violated.  Can you imagine having someone in your home watching you parent?  And judging how you live your life?  Ugh!  It's an awful thought! As if our life isn't painful enough anyway.  I keep thinking about some of the things she said and how we never asked for any of this. I wish we never needed a nurse. I love our nurses, but I would have been perfectly happy having three healthy children and never meeting them in the first place.

So, for now, I am done with strangers.  I would rather go without than having to start over with someone new right now.

Independence

On Monday, the kids didn't have school.  And we didn't have a nurse scheduled.  So, after Harlie's teacher came in the morning, I took all three kids - all by myself - to the mall.  I've never done that before. Harlie got a Build a Bear gift card for Christmas and all three had some Christmas money to spend.  So, we went and Harlie picked out Mikey, the TMNT, of course.

And Cooper picked out Toothless from How to Train Your Dragon.

Then, we went to Toys R Us and let them spend the rest of their money.  Murphy picked out two Disney Infinity characters, Cooper picked out some Trash Pack things with what he had left over after getting Toothless, and Harlie picked out a Baby Alive baby with a toothbrush and toothpaste.  They were all very happy.  Then we went home.  Success!  It's times like these - just being a regular mom, and not a special needs mom - that I've lost.  I'm ready to do more of that, and less medical stuff.

Feeding

Oh, and I almost forgot... another milestone for Harlie! I think I can officially say, that after eight years, Harlie finally knows what hunger is.  Wow!  She will tell me that she's hungry and will let me feed her.  YAY!  It doesn't happen every feeding, of course.  But, I will take it!  I'm very happy about this development.

My nephew

I've been able to spend some good quality time with this little guy lately...

His name is Chase, and he is my younger brother and his fiancee's baby.  He's about to be six months old. He's super cute.  And I've been keeping him a couple of days a week for the last few weeks.

Harlie took this picture.
She cracks me up.

Harlie loves him and helps me throughout the day.  She gets me his clothes and diapers and wipes.  And always makes sure he has a toy within reach. Last night, I wanted to get a pic of the two of them together.

And she decided she needed her eye patch.

And he clearly thought she was crazy.

Rooney might be a little jealous.

Or he saw that my arm had no support, so he came to my rescue.  Either way, he's such a good dog and is so tolerant.  Chase likes to grab his hair, and he just takes it.  Just another reason why Pugs are so great.  Man, I love that dog!

Okay, I think that's all I can do today.  Chase will wake up from his nap anytime now.  I have another post already started.  I am trying really hard to work this blogging thing back into my life.  I missed it!

Thank you for reading!
~Christy xo

Thank you!

We made it home just fine and the trip was uneventful, thankfully.  Well, except that Maggie had me laughing the whole way home.  She's so funny!

Before we left for Boston I went by Harlie's audiologist's office to pick up a device she ordered for us. It acts as headphones, since it is difficult to wear headphones with a hearing aid.  She wears it around her neck and a cord from it gets plugged into the place where headphones would get plugged into.  Then you turn it on, and the sound goes - wirelessly - into her hearing aid.  Pretty cool, huh?  I couldn't get it to work on the way to Boston.  But I tried again at the airport leaving Boston.  I still couldn't get it to work.  Then I tried again on the plane - she wanted to watch Sponge Bob (never give up, right?).  Finally!  I got it to work and it was AWESOME!  She loved it!  This is going to be so great for school and for watching movies in the car, etc.  YAY!  I love that device!!!

Tom picked us up and we went home and had some really good sandwiches.  You know, with deli fresh meats and crisp lettuce on really good bread?  Yum.  Then I went upstairs and got into bed and took a nice long, much needed nap.  Whew!

It's taken me a few days to get back into the groove.  I have felt so super tired - like to my core.  I made myself take a class at the gym and then I went for a run on Sunday.  Today I stayed home and went through all the kids' toys.  They seemed to be everywhere and apart and it was stressing me out.  So, today me and the boys went through all the rooms and separated the toys into throw away, keep, and give away.  And now I feel much better.

So, do you remember this picture I posted last week?

Well, it is now hanging in my living room!  Can you believe some really nice, awesome, thoughtful and anonymous person sent this to me?!  Seriously!  I am SO loved - just like the sign says!  Thank you whoever you are!!!  I love it and it looks so fitting on my living room wall.  Just like it's always been there. I LOVE IT!!!  Thank you!

This one is going to be a short one.  Still trying to get caught up.  And we're watching the Olympics.  So, I gotta go.  I have more to write and will hopefully be able to soon.

Much love!
~Christy xo

Back to the Grind

I hope you all had a safe and Happy New Year. We didn't do much this year. Tom's Mom and Cal (Grandma and Pap Pap) came down to visit. Tom made a wonderful dinner with fresh and local ingredients. I will have to tell you more about it later.

Today is the first day back to school for the kids. And we don't have a nurse today, so I'm on duty. The house was a little crazy this morning but it feels good to be getting back into a routine.

Lately I have been giving Harlie a choice between wearing her PMV or cap. With her PMV she inhales through the trach, but exhales through her mouth/nose. With the cap she inhales AND exhales through her mouth/nose (EXCITING!). And she chooses the cap every time!!

She also said she wanted to wear her BAHA in class. We are really making progress in terms of devices.

Although I forgot to tell you that the FM wire system we worked for weeks/months to get was lost after the very first week. On The last day of school prior to the Christmas break, her hearing impaired teacher went to put it on her and the connection piece wasn't on her aid. I didn't realize that it could even come off! So, at some point between Thursday after school and Friday at 8am, it fell off. I can't remember if it was on there Friday morning when I put her aid on. Which kind of tells me it WAS there, otherwise I would have seen it looked different. I went back and retraced our steps, but couldn't find it. It is beige and very small. So now we have to get a new one. Ugh. Until then she goes without the system.

So, over the break Cooper really surprised us. I've been meaning to tell you that they have started to have their own conversations.

One day they wanted to play with the same toy. Harlie said "mine" and then Cooper said "mine" and they went back and forth until they both busted out laughing. I realized that it was their very first verbal conversation and I wonder if they realized it too since they laughed.

Since then they've had several similar conversations with words like my turn, and lights on/lights off.

One day Harlie signed that she wanted to watch A Bug's Life. We walked into the playroom, where Cooper was playing, and started to put the movie in the player. Cooper had his back to us and said "Mommy, I want to watch Scooby Doo" and then Harlie said, "No, uhuhuhuh." she was saying bug, but didn't have her PMV or cap on, so you couldn't tell that's what she was saying. But then Cooper said, "okay, I'll watch A Bug's Life." What?! I couldn't believe it!

Then, the kicker... Harlie was in the dining room, and Cooper was in the kitchen, two separate rooms, and Harlie was sitting in front of the computer telling me something she wanted. But I couldn't understand her. So I said (after many attempts to understand),"Harlie, I don't know what you want, you're going to have to get your talker." and then Cooper yelled from the other room, "Mommy, she wants to watch Pocoyo!" WHAT?!?! So I asked her if that's what she wanted and she said yeah.

Isn't that crazy?

I'm still floored. I mean, I know siblings help translate for siblings, but this is incredible! If you could have heard her grunts, you would NEVER have gotten Pocoyo out of it. And he was so confident. It wasn't like he was saying she might want Pocoyo. Crazy!

Okay, that's it for now. We're in her hearing impaired class now, so I want to watch. I will write more later.

Thanks!
~Christy

Week Update

I have so much to write about.  But, of course, I don't have a lot of time.  So, I'll try to be quick.

Wednesday night Cooper woke up with a raging fever.  We took his temperature and it was 103.7.  He felt hotter than that.  We gave him some Tylenol and sat up with him for a little while.  His breathing was fast and labored, his cough was barky and his voice was very hoarse.  I'm sure he has croup.  After he calmed down a bit, we put him back to bed and he slept the rest of the night.  He's had a fever off and on since then.

The next morning, even though he still had a high fever, he was bouncing all around.  Lucky me.  He has a fever, he's still all barky sounding, he's clearly sick, yet he's still just as active as usual.  Yay.

But, on the positive side - I wasn't able to go run errands or go to the gym, so I had to stay home.  Which was great because I was able to get a lot of stuff done around here that I've not been able to do.  Like dust my bedroom.

OMG.  The dust in our bedroom was horrible.  I am shocked that we did not suffocate in our sleep.  For real.

But it's all gone now.  Ahhh.  And I feel so much better.

Harlie's IEP (Individualized Educational Plan) meeting was Tuesday.  You might remember this post about her getting her hearing impaired instruction in the special education classroom.  Well, we had to make this change on her IEP and take out her sign language interpreter service.  Now that she's trying to talk, she doesn't want to sign anymore.  Which is fine by me.  I still find myself signing to her on occasion, but I don't make her sign back to me.  I'd rather her use her communication device anyway.  Which she usually does without a fuss.  Oh, and we added a communication device implementation plan to her IEP, too.  Just trying to get that more incorporated into her day.  I have to call our local representative with the communication device company to see if he will come to Harlie's school to train some of the staff on how to use it.  I think that will help everyone if they understand the device a little better.  Including me!

We've also been working on getting an FM system for Harlie's hearing aid.  On Monday I took Harlie to her audiologist and she put a receiver or something on the back of Harlie's hearing aid.  Then the school adds something else to her aid when she gets in class and the teacher wears a microphone around her neck so that when the teacher talks, her voice is predominant in Harlie's hearing aid over all the other sounds.

That started on Wednesday or Thursday and that has been going well.  And while I was at her audiologist's office I borrowed a BAHA (bone anchored hearing aid) to try out.  I guess it's not a bone anchored one yet - it's on a soft head band.  And if it works, we'll have to get it bone anchored.  Her hearing impaired teacher has been using it in her class (since it's only Harlie and one other little girl the teacher can focus more on it) and it's been going GREAT!  In fact, her teacher called me this afternoon to tell me that she asked for it first thing this morning.  And that was after only one day!  She puts that aid on her non-hearing ear and it gives her sound through bone conduction.  So, I bet she hears so much better with it on.  I love that she wants to hear and wants to talk!  Progress will come so much easier and faster when she has the desire and determination to do it.  What a difference!!!

So, now I need to work on getting her the surgery to bone anchor that hearing aid.  They won't do it before age five because their skulls have to be a certain thickness.  They install an anchor in the skull and then the hearing aid clicks onto it.

I've also been working on getting her an appointment with the craniofacial team at Boston Children's Hospital.  So, I'll post about that soon.

Oh, and a few weeks ago, I took Harlie to a speech evaluation with a different speech therapist through our outpatient Children's Hospital here in town.  This particular speech therapist is really proficient with her communication device.  I thought for sure that our insurance wouldn't approve it because we are already receiving speech therapy once a week.  Without rambling too much (is that even possible?!) I scheduled that eval a long time ago.  And at the time I was thinking about paying cash for the speech therapist we see on Thursdays, Becca.  Here's who we see now:

Monday - Amy for 50 minutes (paid for privately, not through insurance)
Thursday - Becca for 30 minutes (paid for through insurance)
Various - Sharon for 30 minutes 2x per week at school

I was thinking of adding Delisa and paying her through insurance because her appointment would be an hour.  And her office is just a few minutes away vs. Becca's office which is 30 minutes away.  I would still keep Becca because I'm at her office anyway for physical therapy.  Plus, Delisa would be the only one working on her device.

But, after gathering all my info, I determined that Becca was too expensive to privately pay (not through insurance).  And I was thinking that maybe three private speech therapists was a little much.  I mean, she's still receiving speech therapy at school, two times a week for 30 minutes each session.  So, all in all, if I added another speech therapist she would be receiving ST from four different SLPs (speech language pathologists) totaling 3.5 hours per week!

I know it's kinda confusing.  And I thought my decision would be made pretty easy because I thought for sure insurance would deny us adding Delisa since they already pay Becca for ST services.  But, I got a phone call this week that it was approved!  Who knew?  So, now I'm trying to decide if four SLPs is really too much.  I honestly don't know how we'd fit it in her schedule.

But, I'm torn because there's a part of me that thinks if we give her MORE therapy she'll talk SOONER!  And isn't that a BIG deal?  A big enough deal to do WHATEVER you have to do???  Or is it just too much?

So, this is what it would look like:

Monday - Amy for 50 minutes (paid for privately, not through insurance)
Thursday - Becca for 30 minutes (paid for through insurance)
TBD - Delisa for 50 minutes (paid for through insurance)
Various - Sharon (30 minutes 2x a week at school)

My gut tells me it's too much.  But my heart says I want her to be able to communicate easier, better, faster, etc.

I don't know.  I guess I'll continue to mull it over.

Oh, and I'm considering co-leading a Daisy Troop for Harlie.  It's part of the Girl Scouts - you're a Daisy for KG through 1st grades, then a Brownie for (?) years, and then a Girl Scout.  And starting out as a Daisy, you pretty much have to form your own troop.  A group of us moms got together, but none of us really want to take on the responsibility of the Leader.  So, we're going to try co-leading.  I have no idea how I'm going to find the time for this.  But, I was thinking that Harlie and I rarely get to do anything fun together, Mother and Daughter.  All of our time is spent going to therapy and doctor appointments, etc.  So, this might be a fun way for us to take the time out to have fun and it will give her even more exposure and practice to playing with other girls her age.

Of course, her repeating kindergarten will throw a little wrench in things - but I'll deal with that later - if she likes it.

So I told Tom all of this and he said, "Just talk to me before you volunteer for anything.  And whatever you do - don't volunteer to be Cookie Mom."  I said, "Oops. I already did.  Volunteer for Cookie Mom, I mean."  What?  That means I'm volunteering to eat them, right?

Oh no.

Seriously, I was thinking that I would rather do that than plan an event or outing or something like that.  Because I HATE planning stuff.  So maybe if I'm Cookie Mom the other moms will go easy on me when it comes to planning shit wonderful activities for our girls to do.

So, our planning meeting is tonight over drinks and dinner.  Eh, we're starting out pretty well so far!  I can be bribed with food and drinks!

Now if I could just get that puppy, that would really round things out well around here!

Okay, that's my week in a nutshell.  I hope yours was as fun-filled as mine was!  Have a great weekend!

Thanks!
~Christy

Marathon Training and Non-Hearing Terms

It's 4am and I can't sleep because I feel like crap.  I have a cold.  I like to consider myself more strong than weak, but colds kick my butt.  I'm thinking it's worse when I'm training for a marathon.  I'm tired from that already, so I don't have much left over to fight a sickness.

I felt a tinge of something Friday night.  On Saturday morning I woke up, met the group, and ran 18 miles.  Overall, I felt pretty good.  The course was hillier than I would have liked (but aren't they all?).  Then we went and got some breakfast.  Then I came home and weeded and planted the flower bed around the mailbox.  And that hurt.  My legs were screaming by then.

That night we went for a walk around the neighborhood with the kids.  I don't know why we don't do that more often.  The kids love it and it wears them out.  A win/win!  Harlie even wanted to walk more than usual.  We are trying to work on her walking endurance (we just started physical therapy again finally!).  And when we got the kids to bed and I sat down, it (the cold) hit me.

I have no energy to do anything.  And all I can think about is how much I'm not getting done or doing that I need to do.  How in the world am I going to get miles in this week?  Luckily, it's a recovery week, so we'll run only 12 miles on Saturday.  So, really, of all times to get sick, this is the best time.  This coming Saturday is 12 miles, the following is our longest before the marathon - 20 miles.  Then two weeks of tapering miles.  Then on November 12th, the marathon - all 26.2 miles of it.  Kinda hard to think about, really.

So, I think this will be my last marathon for a while.  I've already decided I'm not going to do it again next year.  This week alone is a perfect example of why running a marathon is too much for me.  For one, I'm sick.  Two, we have an appointment in Norfolk today to see Harlie's plastic surgeon.  Funny story... I told my night nurse that we were going to see Harlie's plastic surgeon tomorrow and she asked me what for, eye, ear?  Ha!  It's pretty comical that I have to be more specific when I say plastic surgeon.    And no, not eye or ear... jaw.  I hope Harlie has my sense of humor...

Anyway, so we'll be gone the whole day to go to Norfolk (and she'll miss school, of course).  And I can't do my long mid-week runs on Wednesdays because I'll be gone too long and will be too far from the gym to leave Cooper there while I run.  I think I have to run 9 this week.  Which means I'll have to do them on Thursday, rest Friday, run Saturday.  According to our training schedule, we're supposed to run four days a week.  I've already cut that back to three days.  And this week, I'll only run twice, and that includes my long run.  And that's if I can, considering this cold.

I'm over the pressure of having to get these runs in.  Five months of that is too much for me now.  And it would be different if I thought that running like this gave me more energy.  But the fact of the matter is that once you get up into this kind of mileage, the training drains my energy and I have very little left for Tom and the kids.  So, I just need to hang on for five more weeks.  And then it will be over.

Another reason I couldn't sleep is because I saw something on a signing website that's bothering me.  The website said that the term "hearing impaired" is considered offensive to the deaf and hard of hearing community.  And that they prefer those terms - deaf and/or hard of hearing - instead.

Personally, I've always used the term hearing impaired.  And it sounds like that's what our county uses because they call it the hearing impaired program and Harlie has a hearing impaired teacher.  And I feel like it accurately describes her hearing loss.  Here is the definition for impaired:

1. Diminished, damaged, or weakened: an impaired sense of smell.

2. Functioning poorly or incompetently: a driver so tired as to be impaired.

3. Having a physical or mental disability: an impaired child in need of special assistance.

n. (used with a pl. verb)

People who have a physical or mental disability considered as a group: a swimming class for the physically impaired.

So, what's the problem?  I see nothing offensive in that definition.  Maybe I'm desensitized because Harlie has so many issues with so many different body parts and functions.  I don't know.  But, I don't get it.

I was so bothered by it, that after I initially tried to go to sleep, I got back up to google why the term hearing impaired was offensive.  And here is what I found:

Hearing-impaired – This term was at one time preferred, largely because it was viewed as politically correct.  To declare oneself or another person as deaf or blind, for example, was considered somewhat bold, rude, or impolite.  At that time, it was thought better to use the word “impaired” along with “visually,” “hearing,” “mobility,” and so on.  “Hearing-impaired” was a well-meaning term that is not accepted or used by many deaf and hard of hearing people.

For many people, the words “deaf” and “hard of hearing” are not negative.  Instead, the term “hearing-impaired” is viewed as negative.  The term focuses on what people can’t do.  It establishes the standard as “hearing” and anything different as “impaired,” or substandard, hindered, or damaged.  It implies that something is not as it should be and ought to be fixed if possible.  To be fair, this is probably not what people intended to convey by the term “hearing impaired.” 

Every individual is unique, but there is one thing we all have in common:  we all want to be treated with respect.  To the best of our own unique abilities, we have families, friends, communities, and lives that are just as fulfilling as anyone else.  We may be different, but we are not less. 

I just don't get it.  This is the part that stands out most for me.

It establishes the standard as “hearing” and anything different as “impaired,” or substandard, hindered, or damaged.  It implies that something is not as it should be and ought to be fixed if possible.  

Who put the "standard" part in there?  Who says hearing is standard, and not hearing means substandard?  That's negative.  Not the use of the word impaired.  And her heart doesn't function like it should.  Should we not have fixed that?  And no, her hearing isn't as it should be because your ears are made for hearing.  And she's missing an entire ear and the other one is damaged, diminished or weakened.  There.  I said it.  And to try to fix that, we got her a hearing aid.  And we're going to get her a BAHA if that helps her hear better, too!

In another paragraph, it read that the term "hearing loss" isn't liked either because for people born deaf, they never had hearing, so they didn't lose it.

Look, let's face it.  Harlie was born with many birth defects.  I suppose the word defect is probably offensive, too.  The list of offensive terms is getting ridiculous.  Other words that offend some people are special (when referring to children and their needs), and normal (what's normal, after all?).  I'm not bothered by any of them.

Harlie is special.  Her body functions differently than the norm, differently than it is supposed to.  And she has special needs - a nurse and a tube in her throat in order to breathe.

I'm getting off subject.  Before Harlie, I had never met a person who was deaf, or hard of hearing.  Which, by the way, I don't like "hard of hearing".  To me, that sounds like a volume issue.  Anyway, since Harlie, of course, I've met some signing people (all hearing) and I had the pleasure of meeting a deaf couple this summer.  I signed a little - an interpreter was there and she introduced us.  I was so proud of the signs that I knew.  And I was so proud that out of all the people that were there, I was one who knew some signs.  Then I heard that there is a sign for "stupid hearing people".  Now that's offensive.  But, okay, fine.  I felt pretty darn stupid when I was trying to sign with that couple.  But I would have felt the same kind of stupid if I were trying to talk to someone who speaks spanish.  I don't know that language, either.  Doesn't mean I'm not capable of learning, though.  But, whatever.

I think what bothers me most is that I've been using a term for years - one that I am completely comfortable with - that's considered offensive by a whole community.  I don't want to offend anyone.  But I feel this need to help other people understand Harlie's issues.  And I feel that hearing impaired accurately describes her hearing loss.  And it is a loss.  I don't care if she was born that way or not.  And her life is more difficult because of that loss.  Trust me.  I have seen her struggle in class.  The loss of normal hearing is having a profound impact on what and how she learns and how she acts.

And what kind of mother would I be if I didn't try to do everything in my power to help her???  I keep going back to that sentence -  It implies that something is not as it should be and ought to be fixed if possible.

Her heart.
Her jaw.
Her right lung.
Her butt.
Her spine.
Her inability to eat.
And her hearing.

All things that are not as they should be and ought to be fixed if possible.

She is not substandard.  And she is not less of a person because of her losses.  I don't see how anyone could think those things - about anyone.  And I don't see how the term hearing impaired implies any of those things at all.

So, now I'm left wondering what I do from here?  Do I continue to use a term that's known as offensive to people that I don't even know?  Or do I start using Hard of Hearing (which I don't like)?  And frankly, I'm pissed that I even have to think about this.  Like I don't have enough of my mind!  Sadly, it seems that a website that is meant to offer support, only added to my stress and worries.  I'm sticking with what I'm comfortable with for now.  Harlie is hearing impaired and I think she is an extraordinary little girl.

Thanks,
Christy

Round 3 in the OR...

It is now 12:50am, officially Monday morning and Harlie's still up, with no signs of being tired.  I turned off the TV at 8pm, brushed her teeth and her hair, read her a bedtime story and took out her hearing aid.  Lights were off by 8:30pm.  

They tried to do vitals at 9pm.  She was moving too much and would not stop so they could get an accurate blood pressure reading.  I told them to skip it.  

She's told me she's itchy about 15 times.  I've changed her diaper at least five times since 7pm.  These new antibiotics she's on are taking it's toll.  I forgot to tell you that her last several IVs have blown.  On Saturday, instead of doing another one, they agreed to switch her over to an oral antibiotic.  It's worse than the IV one.

About an hour ago she asked for her game (iPod touch).  I was hoping it would calm her down and make her sleepy.  So, I gave it to her.  Then she asked for her hearing aid.  And without even thinking about it - I said no.  She asked again, but I held my ground and signed that she needed to go to sleep.  She stopped asking and started playing.  

And then I realized that I just told my daughter that - no - she isn't allowed to HEAR.  And I feel like crap.  For so many reasons.

She can't sleep because she's itchy.  So, I got up to try and scratch her - again.  And discovered that her bed was soaking wet.  They are giving her water through her g-tube until 2am so she'll be well hydrated for surgery in the morning (when you are hydrated, it is easier to get IVs in). The med port came open and they "fed the bed" instead.  Darn it!  She only has 45 minutes left to get water now.  And there's no telling how much actually stayed in her belly.  Grrr!  

So, I asked them if they can give her something to help her not itch so much and go to sleep.  

She has a dry bed now.  But because of the humidity from the trach collar, the leads that monitor her heart rate and respirations are not staying on.  So, the monitor starts beeping.  It's really obnoxious, if you ask me.  And don't even try to put the leads back on.  She fights you and says "ow" over and over.  Which is ridiculous because there is NO way that hurts.  She just doesn't want anyone touching her in any way.  And I'm starting to lose some patience.  Not all of it - just some.  She's got to learn to pick her battles, for crying out loud.  I don't know when that's going to happen, but I will be very glad when she finally gets it.  All her fighting only makes everything harder on her.  

It is now 1:28am and her iPod's been taken away, she's still tossing and turning, yelling "Mama" and signing "itchy", the monitor is still beeping and I've got the freaking hiccups.  And now I'm itchy.  

Ahhh, the meds are here.  If only there was some for me, too.

It is now 6:30am and we both finally fell asleep at some point.  Thankfully!  They will be here in 20 minutes to come get her and take her to the OR.  Hopefully everything will go as planned!

Thanks,

Christy

Hearing Aid Appointment

On Monday we went to see Harlie's audiologist. The last time we were there, 3 weeks ago, she took a mold of her ear. We have been having such a hard time getting Harlie's hearing aid to stay in. We were having to put it back in place several times an hour, which was so annoying. Her canal is still so tiny (infant sized). With the new mold, they made another piece that goes in her ear. It is glittery (I got to pick it out). And, so far, it is staying in with no problems! What a difference that makes!

She also got tested in the booth. She did a better job of hearing the high frequency sounds this time. But, she still has a hard time hearing the lower frequencies.

She is so funny in the sound booth. In the booth, there is a window so you can see Ann. That window is to our left. And since Harlie's hearing aid is on her right side, all the sound comes from the speaker on the right. So, when Harlie does hear a sound, she looks really fast to the right, and then looks really fast to Ann. Especially when Ann talks to her. It's like Harlie is fascinated that Ann can throw her voice. Then Harlie will laugh her funny little laugh.

The only problem is that the inside of the booth is SO quiet. It is a quiet that I'm betting most people don't get to hear. Add the static noises and I have to fight so hard to keep my eyes open. I would so LOVE to sleep in there!

Anyway, the bonus is that we don't have to go back for three whole months!!! Wow! It is so nice when we're able to get some distance between appointments. And that doesn't happen that often, so when it does, I am one happy camper.

That's it for this post. More later!
Thanks,
Christy

Updates

Yes, I've been a bad blogger again. Sorry! I don't know where the time goes!

Just some quick updates since it is already so late...

Harlie is doing pretty well drinking from a sippy cup. But, if it isn't one thing, it's another. And while she is pretty cooperative and willing to drink - it seems her belly is having a hard time. Today she drank 5 ounces without a problem. Then she threw up 4 ounces. I'm sure that's hard to visualize. But, trust me when I say that 4 ounces is A LOT to throw up. I think it is the most I have ever seen from her. Ever. And that is saying a lot considering I've seen her vomit an insane amount of times. Multiple times per day for years adds up quick.

Anyway, I simply cannot describe how frustrating and disappointing it is to sit there and work so hard to get that food in, just to have it all be for nothing. And there is nothing I can do about it. If only the GI docs could figure out what's wrong...

Now, I'm no doc, but I can tell you that it is clearly a volume issue. Her belly just can't handle the volume in a short amount of time. Her feeding sessions are 30 minutes long. Plenty of time for a normal kid to eat a meal/drink a bottle. Heck, Cooper would scarf down an 8 ounce bottle in just a few minutes. I don't think Harlie has EVER had a feeding that large.

We've been working on trying to get her to tolerate a larger feeding or a quicker feeding rate for her whole life. Three and a half years and we are STILL struggling with volume issues! And now that she can drink by mouth, her belly isn't going to cooperate. Seriously?

Anyway, Harlie is in a big girl bed now! She is loving it! I think she is so much more comfortable. It has to feel better for her back than the hard crib mattress she was STILL sleeping on!!!! Ugh. Anyway, I will post pictures soon. It is still a work in progress as Tom still has to make the headboard. I think it is going to be so cute!

And Tom's little sister, Amanda, was in a car accident yesterday (Sunday). She broke her back (L1, I think) and is in the hospital in PA. We are all very thankful that she's okay. She got her brace today and will wear it (depending on how she heals) for four to six MONTHS! So far it has been a bit of a struggle finding the right pain meds for her. But hopefully this third one will do the trick so she can get some rest tonight and some relief tomorrow. Her recovery is not going to be easy. So, please send her some good, healing thoughts.

Well, I hope you all had a nice Easter. The Easter Bunny was very thoughtful (and smart) and brought Harlie her very own helmet. I guess word travels fast. I think she might have to wear it all the time, though. Today she was stepping down from a very high curb (something she normally would never do without help - I guess she was feeling brave and confident) and almost did a face plant. I stopped to watch her go down, but was not close enough to grab her. Luckily, Jennifer was there, and with her hands full, she still managed to catch the back of Harlie's shirt to stop her from hitting the pavement. It was a close one! And a very impressive save. Thanks Jennifer!

Oh, and another thing... Harlie had a hearing appointment today. She was tested again to see if she could hear any of those low frequency sounds. But, her breathing was so loud today, she said she didn't know if Harlie could hear it anyway. So, we'll just keep trying and maybe one day we'll catch her when her breathing isn't so loud and maybe then we'll get a really good idea of how low she can hear.

We did get another mold made of her ear, though. We have been having a heck of a time keeping her aid in place. It just won't stay secure in her ear canal. Her ear canal is just so darn tiny! So, hopefully they'll be able to get this next one to fit better.

Okay, NOW I'm done.

Take care!
~Christy

Insurance and Hearing Test

I hardly talk about insurance, as I try not to think about it myself. Although that is difficult when I receive several Explanation of Benefits (EOBs) every single day. Literally, I receive anywhere from one to five EOBs each day. I just open them and put them in a notebook. Until that book becomes too heavy, then I archive the oldest ones, and start again. It's really quite ridiculous.

Today I received something a little a different. The letter says:

You are receiving this letter because the claim for the medical services listed above (claim number) was submitted to (Insurance Company) with a diagnosis for a type of treatment frequently found to be related to an accident or other trauma.

So, I think to myself, "What in the world are they referring to?" I look and it says "Children's Hospital".

Hmm, I'm sorry, but you're going to have to be more specific.

I can only chuckle at the fact that when I get a letter like that, that I have NO idea what they are referring to. Yes, there have been that many procedures, surgeries, and appointments. And it doesn't help that we frequent THREE different children's hospitals.

So, yes, you are going to have to be more specific.

After closer examination it says it's from Virginia Subrogation Services. I looked up "subrogation" on the internet and got this definition.

Then I said, "Huh?"

I searched again and found this explanation, which makes a lot more sense:

Suppose you’re in a car accident and it is clearly not your fault. Your car is wrecked and your neck and back have been injured. You are covered for both the damage to your car and your personal injuries, and so you call your insurance company and they pay all of your expenses relating to the accident. Later, your insurance company, realizing that the other party at fault also has insurance that will cover the damages, seeks out reimbursement from that insurance company since its insured was actually at fault for the accident. This is called subrogation.

Hmmmm.

Guess I'll be calling them soon. You know how I am about making commitments. Besides, it says I have 25 days to respond!

Ahhh, life with a medically fragile child is never dull.

On another subject, Harlie had another appointment for her hearing aid today. It was her first one since the beginning of February.

She was tested in a sound booth. She sat in my lap and played with some toys on a table in front of us. Ann would speak to Harlie and the sound came from the speaker on Harlie's right side (the side that her hearing aid is in). She would start at a low volume and would get progressively louder until Harlie looked in the speaker's direction.

Even though I perfectly know that she is hearing impaired, it STILL felt weird to hear things that she clearly, could not. Ann spoke to her, asked her questions and made funny noises all at different volumes. Then she played a static kind of sound or a shhhh kind of sound.

Ann said that she did really well. Although Harlie had enough after several minutes and signed "all done" and got down from my lap and that was that. There was no chance of getting anymore from her.

The results show that her hearing is definitely improved with her hearing aid. Which is pretty obvious in our day-to-day life (yay!). Ann also said that Harlie seemed very different than she has ever seen her (signing more and making more sounds). And we all couldn't agree more. Harlie is a completely different little girl than she has been since her jaw surgery in mid-December. Ever since mid-February when she got those wires out (and treatment for the bone infection began) she is so much happier and more cooperative. She must have been so uncomfortable for those months she was wired and infected. If only she could tell me when she's hurting!!!

We will go back in three weeks. We might have to take another mold of her ear. While she wears her aid all her waking hours now, it falls out a lot. Ann said that she has a VERY tiny ear canal. Like the size of an infant's ear canal. Still! And I've heard this from her ENT, as well. It really doesn't seem to have grown much, if at all, since her birth. And it's information like this that makes me close my eyes, shake my head and wonder when this is going to bite her in the butt. Because I know it will. It will have some adverse affect on her. Her jaw didn't grow right and is too small. She's had two jaw surgeries, and her jaw is still too small. We need her bone to grow. GROW! And the problem areas in her jaw and her ear canal are right next to each other. That area just doesn't want to grow!

Well, tomorrow we are headed back to Norfolk for her weekly appointment with Infectious Diseases. I'm anxious to see if she handles it any better this week. I'll certainly let you know!

Thanks,
Christy

Updates

Snow. Snow. And evidently, more snow. Talk about unusual weather for Richmond! And I'm over it. Schools were closed today and are closed again tomorrow. Which means no school for Harlie, as well. Bummer. And we're supposed to get even more snow at the end of the week. Ugh.

Well, I guess this just gives her more time to get used to the increased volume in her hearing aid.

Yesterday (Monday) we went to see Ann about Harlie's hearing aid. It was her first appointment since getting her aid on January 4th. I was so proud to tell her that Harlie is now wearing her hearing aid - with no struggle - all her waking hours! WooHoo! She said she was very surprised. She was hoping for an hour or so at a time. I told her that we gave her a week or so of letting her have large breaks. Then we shortened the breaks for a few days. Then we just put the aid back in every single time we saw it out. And we didn't say anything to her about it, we just put it back in. And that worked. Although she can only be but so cooperative. When the wearing of her aid increased, the wearing of her HMEs (heat and moisture exchanger) decreased.

Here's what one looks like on her... (this picture was taken right before her jaw surgery in December).



So, that's been challenging. When she goes too long without wearing an HME she gets all dry and sticky and that means plugging, which is not a good thing. But we just keep putting one back on and hopefully she'll stop fighting that fight soon.

Anyway, back to her hearing appointment, Ann turned up her hearing aid volume by two decibels. I have no idea how that translates. But I do know that I when I put it up to my ear it sounds loud to me. We go again in two weeks. And I think she will test her at that time, too. I'm anxious to get some sort of measurement for comparison. Then again, the more information I have the more I have to think about.

I haven't mentioned her hives in a while. Just a few days ago, I thought I would see what would happen if I didn't give her the allergy med. Unfortunately, by bedtime, they came back full force. She was definitely itchy and uncomfortable. So, we'll just have to stay on the allergy med for longer. I guess every couple of weeks I'll try again.

So, I'll leave you with a picture of Murphy and Cooper from this morning. I can't get over their hair. Well, I guess I should say their cowlicks. I'm looking forward to summer buzz cuts...



Goodnight!
~Christy

Preparing for the Eligibility Meeting

Well, tomorrow is the BIG day... Harlie's eligibility meeting (and hopefully IEP meeting immediately thereafter).

I spent some time today going over her test results and writing some goals for her. Here are some goals to give you an idea of what I'm talking about:

want her to be able to communicate to us that she's feeling cold, hot, hurt, sick, etc.
want her to answer simple yes/no questions
want her to look at who is talking/signing to her
want her to follow instructions and simple commands without a struggle
want her to be able to walk from car to building unassisted
want her to be able to go up and down a curb unassisted

There are more, but that gives you an idea.

As far as her developmental testing results go... She was evaluated in the following areas (her score is next to each one)

Cognitive - 60
Personal/Social - 81
Adaptive - 73
Gross Motor - 75

A score of 70 or below indicates a delay. The average range is between 85-115. So, clearly, she is delayed. But as I said before, I am okay with these results. I know that they will improve with intervention. And this test does not measure her intelligence. I think we (her parents) and all the professionals that work with her, believe that she is very smart and she is ready to learn.

I'm hoping that they will find her eligible for educational services through the county and that there is a place for her that fits her needs.

In pondering her educational needs, it is so easy to feel so overwhelmed. I feel the weight of the world on my shoulders knowing that she needs so much to achieve "success" academically and socially in school. There is a heck of a negative chain reaction that is caused by a hearing impairment at such a young age. Completely "typical" kids have plenty of issues with fitting in and learning, etc. at school. While many might think that fact will comfort a mom like me - it actually does just the opposite. It makes me afraid that Harlie doesn't stand a chance with all of her challenges!

So, I feel like my work is cut out for me. I've got to help Harlie overcome a lot. And putting her in the right educational environment now is key!!! And I'm not an educationalist. But, I believe that we have a good team and I think they recognize her potential. So, hopefully they have a plan for her and a place that works for her.

It is getting late, but before I go I thought I would give a quick update on some things...

She is doing great wearing her hearing aid! She has worn it virtually non-stop (during her waking hours) for the past three days in a row! We are thrilled! I was, of course, hoping for a MAJOR attitude adjustment overnight. No chance. But - I am completely happy with a few small victories...

Like just yesterday I was talking to Cooper and turned my body away from Harlie and said to him, "Are you ready for night-night"? And when I turned around, Harlie was signing "night-night" to him! She heard me! How fabulous is that?!

Also, so far the hives have been in check and the new medication seems to be working. One day last week I forgot to give her Zyrtec. That medication is given once a day and we give it to her in the morning. By that night a couple of spots of hives started to appear. So, I guess I will wait another week or so, hold the medication again, and see what happens. At least for now, the medication is keeping them away, so that's a good thing.

Despite her continuous feeding schedule (two hours on the feeding pump, two hours off, three times a day and then a 10-hour feeding during the night) she is now officially vomiting again. Luckily - so far - she seems to be able to get it out of her mouth okay. It was pretty scary watching her vomit the first few times. But as with anything, you get used to it. And now it's back to not being that big of a deal. Unfortunately it is happening several times per day. She is so good about it. She tries to catch it in her hand (if there's nothing within reach like a burp cloth or bowl). And if she's standing, she backs her body out of the way so it doesn't get on her clothes. And then she helps clean it up with a rag. And she doesn't cry or get upset in any way. So, it appears that she doesn't feel any discomfort vomiting with her jaw wired shut. So, that's something. And luckily, we have just two and a half weeks to go till the wires come out! Woo Hoo!

Well, that's it for now. I will let you know how the meeting goes tomorrow.

Thanks,
Christy

Just a quick one...

to let you know how things are going.

Harlie is wearing her hearing aid VERY reluctantly. If she sees me coming with it, she immediately covers her ear with her hand. And then all of a sudden she turns into an octopus and has more hands than I do and it is a major scuffle to put it in. She's worn it for two 45-minute sessions (in two days) and she did wear it for our whole speech therapy session on Wednesday (which is a little less than an hour). The rest of the times have probably been for less than 15 minutes each.

We put it in for dinner tonight so she could "join" in on things. I usually give her a toy that will keep her busy - like Mr. Potato Head or some building blocks - since she can't eat or anything. Murphy talked the ENTIRE time. I almost wished I had a hearing aid I could take out! So, I couldn't blame her one bit when she ripped it out. Seriously, I don't know how that kid gets enough oxygen when he talks like that!!! God love him!

Plus, with Cooper's screaming and carrying on - that's got to hurt! I was thinking that she would like to wear it for her favorite movies. But, even when I turn the volume down to a respectable level - she still takes it out within a few minutes.

I guess this will be a long process.

Now I feel even better about a decision I made over the weekend. Tom was out of town (more about that later) and I realized there was no way I could keep up with Harlie's potty training. She pees every 30 minutes and to get her on the potty is a struggle. I decided that there are only so many battles we can fight. She must think I am the meanest mom ever. And I hate fighting her all the time. And when it comes to the potty - she's going to win. So there. I'm done. I've thrown in the towel! When she's ready, she'll let me know.

And do you know that very day I stopped putting her on the potty she told me she wanted to go! That stinker. She's asked several times since then. So, I'm sure without the pressure from me, she'll probably be potty trained in no time. Maybe this will finally get me to learn that I cannot pressure her into anything. Somehow I need to figure out a way to make her think it's her idea!

Harlie had her private speech therapy on Wednesday. Her therapist taught me some more things about her communication device. Adding that into her day is another long process. And one that will have to start a little at a time. Tom and I uploaded some pictures of the characters of her favorite movies (Ice Age, Finding Nemo, Curious George, etc.). So, she now knows how to ask for a specific movie on the device. That took no time at all. She also knows how to ask for bubbles. We also uploaded a picture of her, so that when she wants to say "I" it is a picture of herself. Now we need to upload pictures of her favorite books and toys so she can learn to ask for those.

After speech therapy I took her to get her haircut. I was a little worried because she has gotten so incredibly protective of her body. But can you believe that she sat there like she's done it a hundred times and was good as gold?! Seriously, she could not have been any better behaved! I wish I had my camera, but I forgot it. And I still haven't taken a picture of her new haircut. I'll do that soon and post it. She just cut some length off - it was way too long. And it was constantly getting in the way of her trach, which got pretty gross after a while. It had to go!

Well, Tom was out of town for his Grandfather's funeral. He passed away on December 30th. He was 85 years old. Tom's Grandmother passed away last December and ever since he has missed her so much. He had a stroke a few months ago and he said he wanted to be with his wife. So, Tom went back to PA for a few days for his funeral.

This is when I hate that our life is NOT normal. We can't just put the kids in the car and go. So, for many reasons, we stayed here and Tom had to go without us. And I hate that I couldn't be a supportive wife. But, Tom said that his grandfather is where he wanted to be, so that helps.

Today we have speech therapy at the school. So, that's it for now. More Later!

Take care,
Christy