Monday, November 30, 2009

Hearing Aid Appointment

Today we had an appointment with an audiologist to get Harlie her hearing aid. We picked out a pretty cool one if you ask me. It is purple (which will match her communication device, which I hope will be here by the end of January) and is transparent. I know I said it's purple, but you can still see through it. She said that the kids really like it when they can see all the stuff inside. Sounds cool to me! The part that's purple will sit behind her ear. With her hair down, you probably won't even see it. During her ABR test they took an impression of her ear (while she was still asleep) so they can make the mold of the part that goes in her ear. We got to pick out that part, too. We picked what they called "sparkles." It is clear with glitter in it. I think it will look pretty cool and hopefully she'll want to wear it.

We go to get it January 4th. And then the fun begins! The first hurdle will be to get her to wear it - and not take it off. The audiologist said that they only give it a little sound so that she gets used to wearing it - and to hearing - a little at a time. I really think that once she realizes the benefits, wearing it won't be a problem. And hopefully we can get it working right for her without too many trips to the audiologist.

I am so anxious to see how things change for her once she starts hearing more clearly.

Tomorrow we have a Child Study meeting with the county. Now that we know she's hearing impaired, we just want to make sure that we are doing everything we can to help her succeed. Her speech therapist at the elementary school put this into action and I am very appreciative. Thanks, Jennifer!

Have a good night!
~Christy

Sunday, November 29, 2009

Thanksgiving Day

I hope you all had a Happy Thanksgiving. It is so hard to believe that it is already over.

We ended up having an eventful day. Harlie had a terrible Wednesday night. Her oxygen saturation levels were so low. They are normally low anyway (around 75-85 - normal sats for a healthy person is close to 100). But I had to turn the oxygen concentrator up to 4 liters of oxygen to keep her above 70! That is a BAD sign. I had to suction her all through the night. And she was working very hard to breathe - while sleeping. I knew what all that meant.

I had to take her to the ER.

It certainly wasn't worth waiting till Friday to get her some help. And I knew that if I did that, her pediatrician would send me to the ER for x-rays anyway, so why wait? I figured the ER had to be pretty slow on Thanksgiving Day. Plus, with her jaw reconstruction looming ahead (now less than 2 weeks away!!!) the sooner she gets meds, the better. Plus, she was acting miserable. She had coughed up so much gunk during the night that it was all in her hair - and she had thrown up and that was in her hair, too (it's so great to be us) so I had to put her in the tub. She normally loves her bath. But, when I put her in, all she did was sit there and cry these big silent tears. It was so sad.

So, we went and they took x-rays and they said that she had pneumonia in her lower left lung. That's a new location for her. The past two times she's had pneumonia it was in her right lobe. Which they say could be caused by aspiration. Which terrifies me. That is a problem I REALLY don't want her to have.

Anyway, they put her on some more nebulizer meds, which she gets four times per day (she normally gets two meds twice a day), plus antibiotics and some Tamiflu, just to be on the safe side. And we were home in time for Thanksgiving dinner. My whole family came over - which totals 20 people. It was crazy. But good. I was so glad they let me take her home so we could all be together.

And she is so much better already. I was able to turn the concentrator back down to 1 liter last night and no suctioning during the night! YAY! So, hopefully she'll be fine from here on out.

Her jaw reconstruction is Wednesday, December 9th. Yikes. It is SO close now. And there is so much to do! We definitely have to take the kids to see Santa before then. There is NO way I can take her after her surgery - that would be terrible! She will look terrible for two weeks!

I know I should have focused on what I am thankful for for Thanksgiving. But, I just didn't have that kind of focus. And honestly, I am thankful EVERY SINGLE DAY for so many things. A day doesn't go by that I don't think of how blessed we are in so many ways. Of course there are days when I feel like if it weren't for bad luck, we'd have no luck at all. But in the end, I know we are lucky. Having Harlie has changed the way I think. I will never take talking, breathing or eating for granted again.

Tuesday, November 24, 2009

Signing Video

A fellow trach mom from the trach support group posted this video yesterday. I just LOVE this guy!!! I think he's hilarious. And I'm completely fascinated by his signing. HIs finger spelling makes my head spin. I really can't express to you how slow I am to finger spell. I guess a good comparison would be that it is like when Murphy tries to spell. And the only words he can spell are ball, the, am, my and like. But, I suppose it doesn't matter - she can't finger spell yet, anyway. Although she DOES know TV. haha

I showed Harlie this video today and she was glued. I hope you get a kick out of it, too.

Friday, November 20, 2009

It's Official.

Harlie has moderate hearing loss.

There. I said it.

I am definitely bummed. Disappointed. Frustrated. Ugh.

I see the good things. We know. Therefore we can address it appropriately. And it certainly explains our difficulties with her behavior. And they do make hearing aids. And it's moderate loss - not complete loss. I am thankful for all those things. Trust me.

But c'mon! When am I going to stop learning about stuff that doesn't work right? And now I have to learn a whole new body part and all the details that go into how it is supposed to work, and why it doesn't work with Harlie. And there will be more appointments, more specialists, and more equipment. Super.

Yes, I'm whining.

For some reason, I really believed that she would get the tube, and that her ABR test would say she was perfectly fine. I really did.

But I guess that was more hope than belief.

So, here were/are my questions...

How could she pass the newborn hearing test with moderate loss? The newborn screening test is supposed to catch that.

Did they do the test - or was that incorrect information? Those first weeks were very busy and very crazy. Maybe it just got lost in all the flurry of tests and surgeries?

If they did it, was it done correctly? If so, did she have good hearing then, and it progressively got worse? Why? Could it continue to get worse leading to complete hearing loss?

Is this loss conductive or sensorineural? Or a little of both?

Most of my questions will never be answered. Nothing new, really. That seems to be the case with so many things about Harlie.

The audiologist that performed the test will get me a full report soon. Then I can read more about the specifics of her hearing loss. I think she said that she showed some sensorineural loss (which is damage to the nerves and is a permanent loss). But, I can't remember exactly what she said. We covered a lot of information in a short period of time. The report will really help me process all of this.

The good thing is that she said a regular hearing aid worn on her right ear should help her a lot. We'll have to get her a BAHA on her left - and we have to wait till she gets bigger for that. They anchor it into the skull, so the skull has to be a certain thickness.

So, I read this and wow, is it easy to get depressed over this!

But I won't. I can't. I need some time to process it, of course. Learning that your child has a disability is never easy. No matter how many things I've gotten over, I don't think it gets any easier. But, she's been receiving speech therapy since she was 14 months old. And we started using sign language at 16 months old. So, it's not like we haven't been addressing her language and communication challenges.

I will say that my faith in her intelligence is restored. With all of the issues we've had with her not cooperating, following instructions, etc. I was starting to doubt her capabilities! But, the fact that she's had three wonderful speech therapists in her three years and we didn't realize that she had hearing loss, speaks for her intelligence. She's been able to figure things out using other means, keeping the fact that she couldn't hear under the radar.

I think part of my struggle with this news is that I thought all along that she had one good ear. I can't tell you how many times I have thanked God that she could hear. Even after her ABR test last summer (which also showed moderate hearing loss - but the audiologist said that if she had an ear infection, that could affect the results and she did have an infection and a granuloma had grown in her ear canal - so OF COURSE that was the reason for her poor hearing results). If I had gotten her another ABR test after her ear healed and a new tube was placed, we would have known sooner. She could have gotten a hearing aid MONTHS ago and who knows where we'd be now.

I don't know what she hears when we speak. And that bothers me. What do we sound like to her? Do we sound like the teacher in Charlie Brown? What does the world sound like? What does music sound like? Does she even hear the narrator in Curious George (her absolute favorite tv show)? So, now I don't know what she sounds like, and she probably doesn't know what I sound like. That makes me so sad!!!!

Hopefully a hearing aid will help all of this. Maybe that will make me stop being a big baby about this. I just hate that I didn't know. And when given a clue - I didn't believe it. Granted, I think I had good reason not to believe it. But, still.

Here's my post from a few weeks back when she had the regular old hearing test that showed moderate hearing loss (that I still didn't really believe) with a video to show what it might be like for her.

Oh my. I just looked up my old post from when she had the ABR done last summer. It said she had MILD hearing loss. And that was WITH a blockage in her ear canal! What does that mean???? Does that mean that her hearing loss has been progressive?

Oh no. I gotta stop thinking about this for a while.

Thursday, November 19, 2009

Another early appointment

Just a very quick one tonight since I have to get up at an un-Godly hour. We have to be in DC (at least 2 hours away) at 5:45am!!! So, we'll be loading a tired little girl up at 3:30am and hittin' the road.

Tomorrow morning is Harlie's ear tube placement and Auditory Brainstem Response Test. Hopefully this will answer her hearing capability questions - for good.

Life with Harlie has been very challenging the past few months (heh - okay, the last few years) not knowing what she can hear or not hear. Is she ignoring us? What does she understand?!?! She seems to be challenging me at every opportunity. And she is wearing me down.

All I have to say is if this tube helps her hear - and her ABR test comes back with normal hearing in her right ear - well, play time's over, Sister!

I'll let you know how it goes...

Goodnight!
~Christy

Monday, November 16, 2009

The Tooth Fairy

made her first visit at our house last night.



I think the Tooth Fairy is pretty cool. She brought Murphy a dinosaur coloring book and a light-up toothbrush. It blinks for 60 seconds so he knows how long to brush.

He's very happy.

Oh, where does the time go? He was so little not long ago.

Sunday, November 15, 2009

Half Marathon Results

I am so happy with my first half marathon! My goal was to complete it in two hours. And to be honest, I was thinking that was kind of lofty (which is why I didn't share my goal in my previous post). That's a 9:09 pace. And that's pretty fast for me (for now).

So, I wrote down some goal times (what time I needed to hit certain miles) on my arm so I could glance down and see how I was doing throughout the race. I couldn't believe it when I saw that I was right on track to hitting my goal time!

In fact, I BEAT my goal!

I finished at 1 hour, 58 minutes and 45 seconds! That's a pace of 9:03 per mile!!! I am completely thrilled!

At mile 5, we entered into Bryan Park. And as I was coming around the corner I saw Tom and Murphy - and then my wonderful friends Melissa and Matt and their two girls!! They drove up from Suffolk to surprise me and cheer me on. I was so happy to see them all! And the best part was that we ran through the park and then came back out the way we went in, so I knew the whole time I was running in the park that I was going to get to see them again. That was so uplifting! I think the park was the most difficult part of the course. It was the most hilly, I think.

This is me (blue shirt, white visor) leaving Bryan Park, waving at Tom.



Then shortly after the park, I saw my friend Bethany and her boys. What a great supporter she is! She's a runner, so she knew all the right things to say. In fact, right after we passed her someone running next to me said I had a great cheering section! It was absolutely wonderful to have so much support!

My bib had my name on it, so I would hear people shout my name and say "Go Christy"! It was great! And I wore my Steelers visor. So people would yell "Go Steelers"! It was so much fun!

And a mom from my special needs mom's group (we have dinner together once a month) was on the coaching team for the training group. She rode her bike along the course giving support to the half marathon training team members. So, I got to see her a few times and got her support then, too.

It really was fantastic to have so much support. I was so grateful for all the people who came out (on a cold and drizzly morning) to support their friends - and strangers. There was one stretch (Brook Road) where the support was very thin - and at times non-existent. What a difference it makes to have people cheering for you.

And at the finish, I saw my parents. Unfortunately, I didn't see them until after I finished. But they saw me and they said that they were screaming my name. But, by that time I think I was in such a zone. I saw the time clock on the banner and I saw that it was going to be close to beat the 2 hour gun time. The gun time is when the race officially starts. But, you wear a chip on your shoe to record your personal time, since it takes a while for you to get to and through the starting line. I knew that if the gun time was 2 hours, that I had to be under that, since it took at least a few minutes to start. I crossed the finish line at 2:00:00. It was awesome.

Here's me coming into the finish...







See my name on my bib? Very cool.





After the race we went home and dropped off the kids and the dads and Melissa and I headed back out to support our friends Heather and Neal. They ran the full marathon. We went to Brook Road, since I found that to be the area that was the least supported. And it was around mile 22/23 - so I figured they could use a boost from friends. It felt great to support them. They looked great and had great finishes (4:31 and 4:35).

Natalie, me and Kelly at our celebration dinner that night. I had a great time. I laughed till my stomach hurt. I love nights like that!



Our waitress was not the best. After she introduced herself, somehow it came out that we had run the half marathon that day. She said with much excitement "OH, you ran the marathon"?! We, of course, corrected her and said "No, the half marathon". Then, looking utterly unimpressed, she said "oh. Well, our specials are..." Nice.

So, that's it. I had a great time training and completing my first half marathon. I think I might be addicted. I will definitely run another one. And, if I can find the time, I think a full marathon could be in my future. We'll just have to see...

Thank you to all my supporters! I couldn't have done it without you!

Friday, November 13, 2009

My First Half Marathon

I hate it when I can't blog for days. It is my therapy, after all. But then so many things happen and it takes me forever to tell you about it. And I don't have time to get you all caught up tonight.

But what I do want to talk about is my first half marathon. Tomorrow. 13.1 miles.

I joined a training group and we started our training program the first week of August. All those weeks of training come down to tomorrow. That can feel like a lot of pressure. So, it's easy to get disappointed when things don't go exactly as you imagined, or planned. And our accident last weekend (on our way to our training run) brought that to light. What if that happened when we were on the way to the RACE?!?!

After the accident, Natalie and I were talking and she said that she thinks that the training was the true accomplishment, and the race is just a bonus. What a great approach!

So, it's bonus time and I'm hoping it's a GREAT one! I'll let you know tomorrow!

Thanks,
Christy

Saturday, November 7, 2009

We have another surgery date.

Late Friday afternoon, I got a call from Harlie's plastic surgeon's office. She said that Dr. Magee had a cancellation and he could do her jaw reconstruction on, gulp, DECEMBER 9th!!!! We were thinking this surgery would happen sometime around February.

It's just kinda weird to think about it being so soon. Maybe I'm in shock. I need time prepare - mentally. And right before Christmas?! We were supposed to go to Pittsburgh the week before Christmas. Now that won't happen. There's no way she'll be able to travel that soon after surgery.

But, I don't see how we can pass up the opportunity. And I guess it's a good thing that I won't be able to spend the next several months thinking about it.

Yep, that's a really good thing.

Luckily, Tom's mom can come down to help us with the boys. And it's better for Tom's work schedule to do it in December vs. February. So, hopefully that means he can stay with me the whole time she's in the hospital. If I remember correctly, she was in for just about three days last time.

Uh oh. I just realized that she needs to get that G-J Tube before she can have the jaw reconstruction. Hmmmmm. I wonder if I can pull that off. I think they do it radiology? So, maybe that will help? Ugh. That will definitely be the first call I make on Monday.

Anyway, so early this morning my friend, Natalie and I were on our way to meet our running group for our last pre-race run, when we were rear-ended at a red light. We were just sitting there chatting and BAM! There was no warning. No brakes screeching or anything. Which, honestly, I think was to our benefit. We were relaxed when we were hit, which I think is a good thing. His car was pretty crumpled and both his air bags deployed.



Natalie's car appeared to have just minor damage to the bumper. But when we drove away, there was definitely something going on underneath the car. We didn't make it to the run, which I guess wouldn't have been that smart to run right after that anyway.

We are fine, by the way. Just some lower back stiffness, which I really think will be fine in a day or so. Now we just have to hope that nothing like this happens on our way to the race! Missing the race would really be VERY disappointing after all the training we've done!

Well, that's it for now.

Take care,
Christy

Thursday, November 5, 2009

More good news...

We have a date for Harlie's ear tube placement and ABR test!

It is November 20. Which, of course, is a Friday - a day I said I wanted to avoid being in DC. Oh well. When you don't have a choice, you take what you get. I feel lucky that it's this soon. I know that her ENT worked really hard at fitting her in his schedule - and then worked really hard trying to coordinate it with the audiologist performing the ABR test.

I am very anxious to get some concrete answers as far as her hearing goes. It has been frustrating not knowing what she can or cannot understand. Not knowing what your toddler can hear/understand has made parenting her more difficult than I can put into words.

And now that this has been brought to the top of the priority list - we are going to start the process to get her a BAHA for her left side - at least. Her ENT told me that getting her that aid will really open up her world. So, that's what we're going to do.

Anyway, just wanted to write a quick one while I had a sec.

More later!
~Christy

Wednesday, November 4, 2009

Spinal Surgery Appointment

Harlie's appointment with her orthopedic surgeon went well. I was secretly hoping that she would say that Harlie's spine has not gotten worse since earlier this year, and that we could wait.

Well, what do you know I got what I wanted! WoHoo!!!

She went over the CT scans with us and showed us where the abnormalities are, and what our options are to correct them - or make them better anyway.

Luckily - none of the abnormalities are in her thoracic spine, which is fabulous. That's the part of your spine that needs to grow to be able to handle the growth of your heart and lungs.

Her abnormalities are in her cervical, lumbar and sacral areas. I'll get Tom to scan in the pictures so I can show you.

But, basically it came down to this ... the risks of doing the surgery are greater than the risks of waiting to do the surgery. So, she will see Harlie every six months to watch the progression of her kyphosis scoliosis. The goal is to buy her some time - hopefully one to two years.

She said that three years old is very young to get spinal fusion surgery. Once you fuse that part of the spine - there will be no growth in that area. So, clearly, the more time you give them to grow, the better it is for them in the long run. Plus, she will have to wear a brace or a body cast for three months - and the more wiggly the child, the harder it is for them. If we could wait a couple of years - say till she's five, then she might be better able to understand what's going on, which will help her recovery.

I'll explain more when I have the pictures to show you.

So, I'm very happy that we can put this on the back burner for now. I was really dreading this surgery. Well, I still am. But now it's far away again, so that's good.

Ahhhh, it feels good to get good news every once in a while.

Take care,
Christy

Monday, November 2, 2009

Happy Halloween!

Just a little family video for you...

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Seriously, let me just say that I am super glad that Halloween is OVER!

And it's a shame, too. As a kid, Halloween was one of my favorite holidays. Mainly, because I LOVE candy. And that's no joke. I seriously can not live without it. Period. So, Easter and Halloween rank pretty high up there for me. And as a kid, my parents made Halloween fun. We made our costumes. And they were always creative and fun.

One year I was a bag of jelly beans. Told you I love candy. I don't know whose idea it was - mom or dad? But, they took a clear trash bag and cut some leg holes so I could be in the bag. Then stuffed it full of balloons. Then they made a sign that said Brach's Jelly Beans or something. Then put a ribbon around my neck. It was pretty cool. I remember every adult going crazy over it.

The other ones I remember were a robot (complete with cardboard boxes spray painted silver and dryer vent tubing for my arms and legs), a butterfly, a mummy, and a devil.

There are some great family stories around Halloween. One I know my mom's going to kill me for telling you about is about my big brother, Bruce. He was in elementary school and he went as an indian that year. Well, my mom dressed him up for school - on the wrong day! So he was the only kid in the school in full costume. And I think it was a day too early - so the very next day everyone was going to school in costumes. It's so funny to hear Bruce tell the story. The other kids asked him, "So, what are you going to be tomorrow?" I laugh hysterically every time I think about it.

Anyway, my whole point is that it makes me sad how little time and energy I can put into being creative for my kids. Just a normal day takes everything I've got. And instead of thinking of something far enough in advance to make the costume, I had to go out a week ago to a store - to buy a ready-made costume. Boring! And not nearly as much fun. But I just can't find the energy to be creative. Or to think weeks in advance for an event. Every day is a juggling act with my schedule - how in the world can I plan WEEKS in advance???? Just thinking about it is overwhelming. And that just makes me sad.

Of course Harlie doesn't make it easy. Well, heck - she doesn't make anything easy. But, she's so freaky about materials - so she won't just wear anything. She overheats super easy. She doesn't get any part of Halloween at all. She can't walk with any endurance and she can't eat any of the candy. She's probably thinking, "what the hell is going on here?"

And it didn't help AT ALL that I had to run 12 miles that morning. TWELVE miles! My longest so far. Although, to tell you the truth - me and the girl I was running with missed a turn and ran four extra blocks. Oops. Anyway, the run was awesome. I felt great and did the 12+ miles in 1 hour and 55 minutes. I am VERY happy with that. And it gives me a little hope that I can run the 13.1 half marathon in 2 hours +/- a few minutes. However, I paid the price that night and was very tired for Halloween. And I had to walk around the neighborhood with the kids. Tom usually hangs around with our neighbors giving out candy.

I say "usually" because he had to throw a major wrench into Halloween. I was just getting the costumes ready at 5:22pm, when he cut his finger washing a very sharp knife. It definitely needed stitches. Which meant he had to leave and go to Patient First. GREAT! He ended up getting five stitches and he took this picture with his phone. He spent the whole night there and missed all the trick-or-treating.



All I have to say is poor Murphy. That kid gets the shaft sometimes. All my tiredness, all my annoyance at the situation, all my impatience at Cooper's busy body and Harlie's suctioning/vomiting interruptions really put a damper on his excitement for the evening. He's the only one that CAN cooperate. So, a lot gets asked of him at times. Ugh.

Anyway, I managed to get them dressed. Although it was a very hot, humid day, so Cooper didn't wear his costume (a dinosaur that was Murphy's years ago). Luckily, Tom's mom sent him a Halloween shirt, so that's what he wore. Getting a good picture of them before we left was impossible. And Harlie wasn't a fan of Murphy's get up. I think he scared her a bit.



Oh, Harlie was a hen. I borrowed the costume from my neighbor, Cami. She's the best neighbor in all the world... Anyway, I bought Harlie a Super Girl costume (I thought it was very fitting for her). However, she refused to wear it. And she would have roasted in it anyway considering the temperature. But still... (so, if anyone wants to buy a new, never worn Super Girl costume for pretty cheap, let me know).



This is me once we were outside and on our way. Tom called to give me a report. I couldn't talk on the phone, hold the bowl of candy, push the stroller, and watch Murphy at the same time. Can you believe that??? What a hack of a mom I am! So, I was probably pretty rude to my dear husband. Sorry Tom!



And here's me managing a smile. Everything was fine once we hit the pavement and got going. I think all the kids had a great time.



Last weekend our neighbors (Mike and Cami) had a Halloween party. Here are some photos...



My plan was for her to wear white tights under black covers over her diaper (instead of the yellow shorts) and to put yellow socks over her shoes. How cute would that have been? But, well, that just never happened. And it was hot. I don't know that she would have worn tights anyway. Oh well...



And my favorite picture...



Tomorrow we are off to DC for Harlie's appointment with her orthopedic surgeon. She will go over her CT scans and x-rays and tell us what her plan is for surgery. Hopefully we'll get an idea of when it will be. I always feel better having a date.

Oh! And we have our first parent-teacher conference with Murphy's teacher. I'm so anxious to know how he's doing in school. I haven't gotten any notes, so I'm assuming everything is fine. But I am so ready to hear some details!

I hope you all had a Happy Halloween. And I'm striving to make next year's Halloween experiences for my kids better, more fun and more memorable. I'm just going to add it to my list right here. Oh, darn. Where is that list? It's only 400 items long. I am NOT writing that list out again!

~Christy