Scheduling Woes

So, two weeks ago today, I called to get Harlie's next heart catheterization scheduled in DC.

Her last heart surgery was in June 2009, and I was told that she would need another cath in about six months. Well, that put us in December, when she was getting her second bone graft jaw reconstruction. So, she didn't get the cath and I knew it was okay to put it off a few months. Well, since her bone infection happened, it had to be put off again. They said no cath until she was fully recovered from her infection.

Even though she appears to be doing just fine in the cardiac area, I would rather not put off the cath anymore. We are getting close to a whole year since her surgery and still no cath. So, I checked with her infectious disease docs in Norfolk and her cardiologist in DC and all agree that she has been on antibiotic treatment long enough to make them feel comfortable with going forward with a heart cath.

So, on a Thursday, I called the cardiac cath scheduler. Her voice mail says that "your call will be returned within the next 24 to 48 hours."

Several days went by with no return call. So, on Tuesday I called again and got someone who told me the scheduler was out of town till Thursday. That would make one week since my first call. Great.

But, just out of curiosity, if you were going to be out of the office for a few days - and NO ONE else could do your work for you (like schedule a heart cath, for example -that is really great that she has job security, though. Really, good for her!) wouldn't you take the time to change your message from "I'll call you back within 24-48 hours" to I'll be gone until whenever and will call you back within so many days after that? I'm just saying.

So, anyway, she calls me on Friday and leaves a message with a question. Not to pick on her - but her question was "do you want to schedule a heart cath or heart surgery?" Hmmmm. Let me think about this for a minute. I called the cardiac catheterization scheduler. If I wanted to schedule heart surgery, I would have probably called someone else. And does she ask every person who calls her to schedule a heart cath if they, indeed, do want a heart cath? Again, I'm just saying.

So, I call her back the same day, and leave a message with the answer.

Today is Thursday, and still no phone call. So, I called again and heard her message that says I'll get a return phone call within 24 to 48 hours.

I have to say that this is one of the most difficult appointments I've tried to make. Back in January/February, I tried to schedule it and got the same "speedy" response. We played telephone tag a couple of times, and then February happened, and I just stopped calling.

The reason why it's bugging me is that I don't want to have to do this! I don't want to go through another heart cath and then another heart surgery! The logistics of getting to/from DC, should Tom go, should he not go, will we stay overnight, who will be with the boys, when will this all take place, and HOW SCARED AM I GOING TO BE SITTING THERE IN THE WAITING ROOM AFTER WHAT HAPPENED IN FEBRUARY?!?!!

So, add to all that stress and worry, having to call, write down when I called, keep track of how long its been since I called, so that I can then call again, and I just get easily ticked. And annoyed. I don't know if this heart cath will be in two weeks or two months. Not to mention when her heart surgery will be.

And I have a life to live, people! I want to know if I can train for a marathon, a half-marathon or nothing at all. And I don't like to make plans - but this is different. I feel like my life is on hold for something like this.

So, to make scheduling the appointment difficult???? Well, that just seems cruel, don't you think? Cruel to us parents of children with more medical issues than I can list in under 500 words. I might be exaggerating, but I think you get my point. I really need to reserve my patience for feeding therapy and potty training. And Cooper. Especially Cooper. God love'm.

The message I left today was nice, even though I was kinda mad. So, hopefully I'll hear back soon. Please keep your fingers crossed for me, okay?

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

Happy Birthday Tom!

I know I don't brag enough about my husband. But I think he's wonderful. I know our life is really hard, but I think the two of us are doing a pretty good job at making it work - while maintaining an incredible happiness. And no matter how hard I worked, I could never do that without him. Here are some reasons why I should brag about him more often:

He is very funny.

He is very driven and passionate about things. (This can also be a negative as he can become obsessed with a hobby, for example, to the point of absolute craziness and insanity (my insanity, that is). But, I said I was bragging, so I won't talk about that.)

He is a very hard worker and wants to do the best job possible no matter what it is.

He designs beautiful kitchens (and other rooms, too). Unfortunately, they are not OUR kitchen, or other rooms. Maybe one day. But you should call him.

He is very outgoing and NOT shy.

He is very smart. Sometimes this is a negative, too. Like when I think I'm right, and he turns out to be right instead. That stinks. But, most of the time it is actually quite helpful. For example, because of all the snow we got this winter, he made a snow plow out of wood. So, instead of shoveling the driveway, he pushed it to the side. It was so much faster than shoveling!

He is an excellent cook. And for that, I am truly grateful. For if it were up to me to provide dinner every night we would either starve or we would be fat from eating nachos every night.

He is very physically fit. He has worked really hard to get to this point. He wakes up at 4:30am 5 days a week to go to the gym. Then he comes home, gets Murphy up, dressed and fed, and then walks him to school. And he exercises 6 days a week. Sometimes that's a negative, like when I want to run on Saturday and he wants to bike. But, again, I'm bragging here. I must stay focused!

He has a great imagination for things that Murphy likes. For example, one day he made up a scavenger hunt with clues like, "what does Mommy like to drink each morning?" And playing I Spy when Murphy is bored. And building forts. Which also turns out to be a negative in that I have to fold and put away all the blankets. Which, for some reason, seems to take a lot more effort than it should.

Well, I could go on, but I really don't like to brag.

I think he's wonderful.

Tom, you are a fabulous husband and father and I can't imagine traveling this road with anyone else but you!

Happy Birthday!

Love,
Christy

Little Feet Meet

The Special Olympics Virginia Little Feet Meet was on Friday. It was a lot of fun.

They had different events set up (baseball, soccer, track, hockey, bowling, etc.) and each child had a card with all the events listed. As they completed each event, they got a sticker. The volunteers at each station were high schoolers.

After completing several events, we looked at Harlie's card and saw that she needed to go to the baseball station. So, she walked on over and all the volunteers were sitting around the station, talking. When they saw Harlie approaching they all jumped up and one of them said, "Batter Up!" It was so cute!

After all the kids were finished, they had an "awards ceremony" and a volunteer had a microphone and announced the child's name and they went up and got a ribbon. It was really very sweet.

Harlie had a GREAT time. She had a smile on her face the entire time. And I can tell that they've been practicing these events at school for the last several weeks. I really think her balance has improved. She could really kick that soccer ball!

Tom met us there, which Harlie just loved! And Jennifer (one of Harlie's nurses) and her daughter, Kyleigh, came up to cheer her on. My Dad came up, too, but couldn't find us, which was a real bummer. My Mom couldn't come because she was watching Cooper for me. There is NO way we could have enjoyed the day with that mad-man running around. I say that in the most loving way, of course. But he's really quite energetic and curious, that one.

Well, here are the photos from the day. There were way too many for me to upload - so I made a little montage. I hope you enjoy it!

Make photo slide shows at www.OneTrueMedia.com

That was Harlie's teacher at the end. Mrs. Katie is wonderful and we feel so lucky to be in her class!

Thanks, as always, for checking in!
~Christy

Cooper

On Tuesday, Cooper had an eye appointment with an eye doctor.

A long time ago (like when Cooper was six months old) we noticed that his right eye wouldn't track the same as his left eye when he looked to his left. I talked to the pediatrician about it, and I couldn't get Cooper to do it so I could show him what I was talking about. He said to wait and give him more time and see what happens.

Well, in the past few months it has gotten more and more noticeable. So, at Cooper's 18-month check up a couple of weeks ago, I mentioned it again. He said to call Dr. Brown (Harlie's eye doctor).

They did their stuff (Cooper was very UNcooperative) and said that he has Duane's Syndrome, Type II.

I beg your pardon?

She said it is a misnomer in that a syndrome usually means there are multiple abnormalities (yeah, I'm familiar) but that Duane's Syndrome is just this one thing. Whew!

Basically, one set of his eye muscles in his right eye are weak or underdeveloped or something like that. So, when his head is facing forward, and he looks to his left (with only his eyes) his right eye does something funny - and they are not even. It's almost as if his right eye looks up instead of to the left. And it most often occurs when he is looking up AND to the left at the same time.

She said that as he grows, we will notice it less and less. He will learn to turn his head to compensate. She said that he probably sees double when that happens, so to correct that he'll just have to turn his head to see more clearly. There's no fix.

So, that's that.

I had to laugh at myself, though. On Sunday, I told my friend Heather about his upcoming appointment. On Wednesday, she called me and asked me how his appointment went. I said, "what appointment?" HA! I had already completely forgotten about it!!! Poor Cooper.

Oh, darn it. I meant to take a picture of him today. Tom gave him another buzz cut and he looks so adorable. Oh well, I'll just show you this one from a couple of weeks ago.





He can now say the following words:

Mommy
ball
all done
aw, man (he totally learned that from me)
uh-oh

And he has said please (came out "peas") once.

And despite my many efforts and much energy - the kid REFUSES to sign one stinking word. Not one! Just out of curiosity I went and looked at some of my old Babysite journal entries. By the time Harlie was 16 months old, she knew 20 words in sign!!! And Cooper, at 18 months (almost 19) knows ZERO signs and can only say a few words.

He is so stubborn. And funny. Last night, Tom went to CVS to pick up Harlie's meds and he bought Cooper a pair of knock-off Crocs. Well, Tom put them on him this morning, and he would not take them off. He even took his nap wearing them. And at one point during the day Harlie tried to take them off and he threw a fit and wouldn't let her.

OH! I almost forgot... tomorrow is the Little Feet Meet at a local high school. It is a Special Olympics Event. And since Harlie is in a special education preschool, she gets to participate. I am excited to see what she can do. I will take lots of pictures (of course) and write about it tomorrow night.

Thanks!
Christy

Don't you just hate it...

when your hair grows back after a craniotomy?



I love it that Harlie doesn't know, and doesn't care. And we get to laugh, and no one gets hurt.

Have a great night!
~Christy

Murphy's Homework

This afternoon we were working on Murphy's homework. One of his tasks was find something in your home to match each shape: circle, square, rectangle, triangle.

This is what he wrote:



I had to help him with the word bowl. At first, he had it spelled as bol. Normally, I leave it the way he writes it. But, it just seems like I should be telling him how to spell them correctly. But, with tishoo box? Well, I just couldn't bear to have him change it. I had to walk away I was laughing so hard. It's just so darn CUTE!

And wectogol translates to rectangle. But he wasn't supposed to spell the shape, he was supposed to spell the item in our home that is in a shape of a rectangle - like refrigerator, which he added at the bottom.

Kids are funny.

Murphy's Questions

Murphy and Cole were playing outside this afternoon. I was upstairs in Cooper's room, when I heard Murphy yell from downstairs...(read the following in a yelling tone).

Murphy: "Mommy, how did they put your tummy back together?"

I pause with a very puzzled look on my face.

Me: "What?"

Murphy: "How did they put your tummy back together after you had Cooper?"

Me: Silence. (I did not have a c-section.)

Murphy: "Mommy? How?"

Me: "Murphy, we'll have to talk about this later. Why are you asking?"

Murphy: "Because I don't know, and I want to know how they put your tummy back together."

Of course. He doesn't know, and he wants to know. That makes perfect sense.

Oh brother.

infectious Disease Appointment

We had another appointment with her Infectious Disease doc in Norfolk on Tuesday. I think it has been 3 weeks since our last visit. She has been on an oral version of Levaquin since then, and has been doing well. No diaper rash (thank God!) and no increased vomiting, hives, etc. So, that's wonderful. I have been very happy with how well this antibiotic is going so far.

She started receiving antibiotics on February 11th. It has now been over two months of treatment. The doc said that the normal treatment time for this kind of bone infection (because they are so much harder to fight) is between three to six months. So, we are not even halfway yet. But, as long as the Levaquin works okay, I'm happy.

Since she no longer has the PICC line, they had to draw blood. The only negative was that we had to go to the lab. It was very crowded, and not comfortable at all. There were two small rooms for drawing blood, which were in the middle of the waiting room. So, you could hear everything - including crying and screaming while they were poking kid after kid. There are definitely moments that I find it helpful that Harlie can't hear very well. But Cooper and Harlie played anyway, ignoring the screaming, and were very good.

When it was Harlie's turn, she was a champ. One stick, and just 45 seconds later, we were walking out the door. I'm so proud of my little girl sometimes I just don't know what to do.

We go back in about 5 weeks, I think.

More later!
~Christy

Feeding update

We had feeding therapy on Thursday. It went well, I think.

I can't believe how willing and accepting Harlie is to her feedings. Getting her to take a drink is rarely difficult. Our struggles are with her belly - and that it just can't handle the volume. Well, that's our guess, anyway. The GI area of the body is a complete mystery.

Yes, stuff goes in, stuff comes out and when it works that's great. But when it doesn't, well, good luck!

I still can't wrap my head around why we've always had such an issue with volume control. To watch Cooper down an eight ounce bottle in mere minutes proves my point. Harlie has NEVER been able to have an 8 ounce feeding. She's three and a half and is getting just five ounces. And still throwing up daily - after reflux meds and surgical intervention!

We've determined that she's more likely to keep more down if we give her half a feeding orally (over 30 minutes) and then finish the feeding through the tube and feeding pump over the next 30 minutes.

So, on Thursday, Allison (her therapist) fed her an ounce of pureed sweet potatoes and two ounces of Pediasure. She did beautifully. But then threw up with only 4 bites/sips left. Ugh. But at least she got to see what I was talking about. After she threw up a good amount, she went right back to feeding and finished it. With no complaint.

Seriously? Who throws up and then goes right back to eating/drinking what they just threw up with NO complaints??? She is really something.

Well, the big news is that Allison said that she is going to refer her to the inpatient feeding program.

This means that she will send Harlie's name to the team for consideration for admission to the intensive feeding program. We have our meeting with the whole team on May 11th. So, I'll learn more that day about what they think. In the meantime, I guess they will talk with Allison and review her file or something to see if they think she's ready, too.

Basically, the intensive feeding program lasts 6-8 weeks. It is an all day program (8am - 3pm) where the child stays there for all meals, Monday through Friday. Yeah, it's intense, alright!

Allison said that they will be able to try all different kinds of food/beverage combinations/frequencies to figure out what works best for her. With as willing and cooperative as she is, we just can't let this opportunity slip by.

I know there is a waiting list to get a spot. But I don't know how long it is. Allison said that summer is a busy time since parents don't want their school-aged children to miss school.

So, we'll see.

It is pretty weird to think how far we've come. Admission into this program has been like a pipe dream for us. I would have never guessed that we would be here now. I don't want to get ahead of myself. We aren't there yet. But, this is certainly the farthest we've ever come!

Even though I am not a planner - I am aching to know when things are going to happen.

I called to get her next heart catheterization scheduled. Hopefully I will hear back on Monday. Once she has her heart cath then they will tell me when her next heart surgery will be. I just hope we can pull all this off without the times conflicting. And I want to give her enough time to recover before throwing her into the next thing. Especially something as intensive as this feeding program.

I would have scheduled this heart cath a lot sooner if I could have. But, with her bone infection, we had to wait until she was at least half way through the antibiotic treatment. More on that later.

Having things this big hanging out there is very unsettling. I will feel so much better once we have them on the books so I can start to "prepare" myself. Thinking about heart surgery again - after what happened in February - makes me shudder. But, avoiding it would only make it worse.

That's it for now. Thanks for reading!
~Christy

Busch Gardens

This past week was Spring Break. Since we have no plans to take a vacation this year, I thought I would try to make this week fun for the kids.

On Monday we went to the park.
On Tuesday we went to the Virginia Living Museum in Newport News.
On Wednesday we went to the mall to let them play in the fountain.
On Thursday, Tom took the day off from work and we went to Busch Gardens.
On Friday, it was just me and the kids and we stayed inside and played all day.

I think it was a great week. Harlie only had two appointments (for her hearing aid and speech therapy) the rest were cancelled. So, it was a nice break to not have to worry about her busy schedule.

And, clearly, Busch Gardens was the highlight. It was a splurge, but so worth it. We got Fun Cards (same price as a one-day admission, but you get to use it all summer through September 6th). We figured we can get down there several times this summer if we play our cards right. We packed our lunch and some snacks, and headed down for a long, fun-filled day.

And the day went great. The weather was perfect - not too hot with a nice breeze all day. Getting back to the car for lunch was easy. Murphy was braver than expected and actually rode some big rides. No one needed back-up clothes the entire day. And Harlie didn't vomit while we were there. What more could you ask for?

Here's Murphy after his first roller coaster (in Sesame Street) experience. He liked it.



Here's Harlie and I - she was all smiles!



Murphy was so good. He rode the little rides with Harlie and Cooper with no complaints. I know that won't last forever.



It was the strangest feeling to put Harlie on a ride - and then back away. I know she was right there. And the likelihood that she would need immediate attention during the ride is slim. But it felt weird anyway. Unsettling is probably more accurate. Oh, how an artificial airway changes everything...





I can't remember the last time Harlie took a nap. Trust me, it has been a looooong time. Well, about 5pm, she turned sideways in her stroller and went to sleep. In the past, when she took a nap, she wouldn't go to sleep at night. But, I took her hearing aid out anyway, and let her get some z's. And she went to sleep just fine that night (around 8pm) and slept until 10:15 the next morning. Whew! She was tuckered out!



Cooper had a great day, too. He loved all the rides. When Tom and Murphy went to ride the log flume (I was a little worried about Murphy on that one since it had two steep hills - but he said he loved it) I sat with Harlie and Cooper in the shade. That's when she napped. And Cooper and I had some good one on one time. And he found some things.

Like his nostrils...



That kid cracks me up. He is ALL boy.

The only negative thing about the day was the Interactive Sesame Street Show. We were on our way to the car for lunch when we walked by it and a show was just starting. So, we ducked in real quick to see what it was.

As we went to sit down, I noticed that the seats were a little wet. And then I saw a sign - "water effects". Great. Well, it was just a little tiny squirt. I think the problem was that it surprised her. And she did NOT like it. At all! She had a duck fit. She sat on my lap - facing me - and every time she felt water, she went crazy. Luckily the show was not long. And then we went to eat lunch.

Once we were back in the park we went to Escape from Pompeii.

Side note: After the ride was over, Murphy said to Tom, "Daddy, there should be a sign that says No Murphy's Allowed. I am never riding that ride again"!

While Tom and Murphy went to ride it, I sat with Harlie and Cooper in the shade. Cooper was napping. Well, a few feet from where we were sitting there was a fine mist of water that sprayed every few minutes or so. It was so light that it didn't even feel like water. It just felt cool - temperature cool - not like totally awesome cool. Well, Harlie had another duck fit. She crawled in my lap and buried her head in my neck and would not stop crying. Every time that mist came on, she went crazy. And when the ride would splash at the bottom - even though we were no where near it - she would go nuts. It was terrible. After at least 15-20 minutes I realized she was not going to calm down - or get used to it. I was hoping she would realize that nothing was hurting her or going to hurt her, but no such luck. And she wouldn't even raise her head during the breaks between the sprays or splashes!

I would have moved a lot sooner, if it weren't for the fact that we brought two umbrella strollers. Darn it! But there was no question about it - we had to move. So, I put Harlie in her stroller and after a lot of time and concentration, I somehow navigated both strollers through the crowd (meaning I just kept as straight as possible and made everyone else move out of my way - steering two umbrella strollers - that are different sizes - is no small task). At one point, I know I looked completely ridiculous. Well, honestly, I probably looked ridiculous the whole time. But, at one point I would move one stroller up a few feet and then go back and get the other one, etc. We won't be taking two separate strollers again.

Anyway, she was much happier with the new location, let me tell you. But, for the rest of the day, every time we walked by any sort of water spray (like a fountain) she went crazy. It was terrible.

And evidently, so scarring was the experience, that she was showing signs of trauma on Saturday! We were all out in the front yard doing some yard work. Well, Tom and I were working, and the kids were playing. When our neighbor across the street started to hose off his driveway. Oh, geez! Harlie went nuts. She backed up to the house to get as far away as possible. I know it sounds terrible, but we couldn't help but laugh. She's just so darn funny.

The weird thing is that she loves water. She loves her baths. She loves the sink she got for Christmas. Which, speaking of the sink... I got that out and brought it in the front yard so she could play near us. It was a little dirty, so I got our hose out to spray it off and fill it with more water. She was right beside me - so excited to play. When I turned the water on, I looked around and she was gone. Gone! No where to be seen. I guess that proves it - she can move fast when she wants to! After I filled it, I went and found her in the garage. I told her the water was off and she could go play. She understood and went right to the sink to play.

I guess she's fine with water as long as it isn't spraying. She's known for a while that water isn't safe for her. I never told her. She just figured it out. And when she has a little control - like in the bath or sink - she's fine. But I guess the spray is too unpredictable for her. Or she just doesn't like the feel of it. Either way, this new phobia of hers is going to be interesting this summer.

Well, that's long enough for tonight. I have a lot of blogging to do. But tomorrow is another day...

Thanks for reading!
~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