Lots of Stuff

It is so hard to believe that tomorrow will be two weeks that Harlie's been in her cast!  It has been BUSY!  We've had lots of visitors, which has been wonderful.  It's really amazing how many good people are in our lives - and we are so thankful!  And well fed!

We've also been busy figuring out what works best with Harlie and that cast.  I think it's safe to say that we're doing well.  She's been using the bedpan without any issues.  And we've all had enough practice that we can do it alone now, which is great.  Her spirits are up and she appears very happy and always in a good mood.  Which totally flabbergasts me.  I jokingly told Tom that I'm a little concerned because she's SO happy that I'm afraid she might have lost her mind!  

Why is she so happy?  The only thing I can think of is that she gets to watch all the TV that she wants.  I think we might have to start making an activity schedule for this week (clearly I can't leave well enough alone!)  But I am so sick of having that TV on so much!  I think we'll need to do book time, painting time, school time, etc.  Now that I know she's not in pain (and clearly she's happy) it will be easier to start to expect her to do something other than watch TV.

She's also eating fantastically and is now averaging between 25 and 30 ounces per day orally - and 0 through the tube.  I can't believe that she has not been tube fed in over two weeks!!!  We still use the tube everyday for water and meds.  But I never expected her to be doing so great with feeding.  She even asked to eat breakfast on Saturday!  CRAZY!  

On Thursday, Jennifer borrowed a friend's wagon for Harlie to use to be able to go outside.  It was the perfect day for it, too!

Jennifer asked her if she wanted to swing, and she said yes.

Me pushing Jennifer and Harlie on the swing.

It might not look like she enjoyed it, but she did.

After that I went to Murphy's school to have lunch with him.  It was our turn to be "parent of the week" - perfect timing, right?  We had to pick a day to come in to spend 20-30 minutes in class reading to them or sharing an experience, culture, or whatever.  I stressed a little over it because I was really tired last week and I had no idea what I was going to do.  Oh, and I think a whole bunch of 6 to 7 year olds could be intimidating.

Murphy gets to pick one friend to come to the parent table and J. is who he picked...

Me, J. and Murphy.  

After lunch, it was time to head to the classroom.  I am so mad that I forgot to get the teacher to take a picture.  It was actually quite cute.  And it was VERY enlightening.  I will no longer worry about Murphy in school.  His behavior seems to be completely normal!

So, I decided to talk about/teach some sign language.  The kids seemed very interested and most just kept their hands raised the whole time so they could ask how to sign a particular word.  Most asked for normal words, like cat, dog, lion, etc.  One kid panicked when it was his turn to ask and he looked around the room and then said, "how do you sign curtain?"  Yeah, I don't know that one.  One asked how to sign armadillo.  Really?  Kids are funny.  And then it went down hill.  One kid said, "I know a bad word in sign."  Ugh.  So, I said not to sign it and pointed to another boy who had his hand raised.  Then he said, "I know what this means" and his hand was like this:

I said, "That's the letter F" and then he pointed to the three fingers (one at a time) while he said "A. S. S." and then pointed to the thumb and index finger and said "hole".  Nice.  First grade, people.

Well as you can probably guess, that ended the sign language portion.  So I grabbed Skippyjon Jones and started reading.

Overall, it was a really good time.  And very educational for me.  Now I know how to say "ahole" in sign.  That's really not how you do it, by the way.  At least, not that I saw when I looked it up when I got home.

Then, Mrs. Katie, Harlie's preschool teacher, came over for her homeschooling time.  I really think Harlie enjoys that hour.

Then on Friday morning, Tom's mom (Maryann/Grandma) left to go back to Pennsylvania.  We were so glad she stayed another week after we got home.  It was really good for Harlie to see her that much.  Usually Harlie doesn't get to see her much since she's here when Harlie's gone.  And she was such a big help during a very busy, getting back into the groove kind of week.  We are so thankful for all she does for us!

Grandma and Harlie.

Jennifer got Harlie that cloud pillow.  It is a wedge thing and
works perfect for keeping her from sliding down too far.

Then Traci (Harlie's PT) came over to bring us some equipment to use.  She brought a stander to help her put some weight on her legs.

Traci, Harlie and me.

Brandy, Harlie and Traci.

Once she got over the initial fear of what was going on, she didn't seem to mind it that much.  She stayed in it for a few minutes.  We're thinking that once she is more pain-free she will actually want to stand to take some pressure off her back.

Plus, she's gotten some really cool gifts this week from friends and family, and standing like this would make for better playing.  So, we're going to work on that this week and see what she can tolerate.  Traci also brought a larger walker for her.  I don't think we'll be doing that one on our own, but you never know.  I'm going to let Harlie lead the way on that.

Another good thing about this week was that - despite it's busy-ness - I managed to get in FOUR short runs!  I'm slow.  Really slow.  But I'm hoping that it won't take that long to get back to my old endurance and pace.  Honestly, it just feels good to be running again.  Hopefully I can keep it up!

Well, that's it for now.  More later!

Thanks,
Christy

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.

Speech Therapy

So, we had speech therapy today. She gets a one hour session, once a week. Today I decided to take Murphy with us. Teaching him to sign with her, and to "listen" to her sign, is quite challenging (like when she wants him to move or stop, for example). She is pretty easy to ignore - especially for a 5-year old boy. So, I thought a little instruction by our therapist would help.

To give a little background - these sessions are exhausting for me. I sit there and let the therapist be in charge. Sounds almost relaxing, right? WRONG! To see her try and get Harlie's attention - and then keep it, is frustrating. Harlie's just like any other kid, if she doesn't want to acknowledge what you're saying, she averts her eyes. Kind of hard to show her a new sign if she won't look at you. And then Michelle tries to get Harlie to finish her sentences by anticipating what comes next (like in sequencing an event like taking a bath - first you pour the water in, next you put the baby in, etc.). The whole time I am willing Harlie to cooperate. I sit there and think, "c'mon Harlie, you know that sign. You can do it! SAY IT FOR CRYING OUT LOUD"!

It's the willing her to do what she's supposed to do that sucks the energy right out of me. Today, Michelle tried to get Harlie to tell her who Murphy was. She asked her "Who's this"? Harlie didn't really care to introduce Michelle to her big brother. And that whole little lesson made me start the session in the hole - energy wise. Honestly, I don't know how these therapists have the energy to get through the day, seeing patient after patient.

The rest of the session was more of the same. Murphy's attention span is short, and Harlie's is even shorter. Michelle played a game of bingo with them. That was good, because they had to take turns and it's more structured. And you'd be surprised how many signs you can use playing a game.

But, I gotta tell ya - the thought of teaching all my kids and my family sign language is absolutely overwhelming. And really, I think the word overwhelming is an understatement. It's all fine and good teaching her (tiring, but good). But that's because she knows she needs to learn to tell us what she wants. Murphy? HA! He can talk. Why should he learn? And Cooper? We have to start all over with him. ugh. A simple thing such as saying goodnight. "Murphy, tell Harlie night-night". Murphy says "night-night Harlie" (without signing at the same time) and then I have to say, "Murphy, use your signs while speaking to her". To which he either does, or doesn't. And when he doesn't I have to tell him again to sign while saying night-night to her. And make them go through the whole process again. Oh my goodness. All those words and energy for two lousy stinking words - night night! WHICH WE'VE BEEN SAYING EVERY NIGHT FOR I DON'T KNOW HOW LONG! Holy cow!

Has the energy been sucked out of you yet? Because I would totally understand.

But Michelle said that Harlie is getting more aware of who understands her and who doesn't. So I'm sure she's thinking "what's the point"? So, instead of signing to Murphy to stop or move or whatever she wants to say, she grunts (very loudly I might add) and pushes to get your attention. Although I will say that Harlie will sign "share" - that's one that they certainly use with each other. Not that either of them (or any child under the age of seven) actually understand and practice it. They only know share when the other one's got what they want. But I digress...

While, for the most part, I have found signing "fun" (but really only because it allows me to communicate with my daughter), I can't help but wonder when she'll be able to talk. And I think life will be so much easier... one day.

Changing the subject, I took Cooper to an appointment today. He weighs 22 pounds (Harlie weighs 25). He measured in the 10th percentile for height (meaning that 90% are taller than him) and the 95th percentile for weight (meaning that 5% are fatter than him). So, by my measurements, he's ROUND. Nice.

Goodnight!
~Christy

Harlie talking

This is a clip of Harlie's speech therapy last week. I think she is doing great verbalizing. She certainly tries. And she's pretty loud - even without a PMV (speaking valve). Mostly we work on teaching her how to make vowel sounds. We're still a looooong way off from "talking", but she tries and that's what's important.

A lot of her progress depends on me (and Tom). But, I'll talk about that in another post. It's too late for that now.

Take care,

Christy

It's Signing Time!

So, I took Harlie to the doctor today. She has another ear infection - and this is WITH her tube! Ugh! He said he was more worried about her left lung than her ear. So, he's treating her ear infection with some antibiotics to try and stop her from getting worse - on both fronts.

She has her pre-op heart catheterization on March 10th and she must be "healthy" or they can't do it - which would push everything back. And we don't want that. So hopefully the meds will help her get better soon. When she's this junky we really can't get anywhere with her feeding or speech therapies. Her secretions are way too much for her to handle. We are going through bibs like crazy. Within minutes they are soaked. (Donna - I KNOW you know what I'm talking about!!!). Yes, it's disgusting, but we're pretty used to gross stuff around here.

After I got back from taking her to the doctor I ran to the gym, got 4.5 miles in and then came back home and rushed out for her first speech therapy appointment with our new therapist, Michelle. Harlie was definitely NOT excited about it. It is definitely very different to have to go to the clinics vs. them coming to our house. It takes a few minutes for her to get comfortable enough to get something accomplished. Whereas when they came here, they could just get down to business.

Anyway, after being there a few minutes, Harlie signed "home" and "hat" and grabbed her coat to leave. I love that she can "tell" me what she wants! While I knew we wouldn't get much therapy done with her being sick, I also knew that Michelle and I would have to do a lot of talking to bring her up to speed on Harlie and where we are and where we want to go. She asked me what Harlie knew, what our routine is like and what is on the horizon for her, medically speaking. We talked about communication and what I like/don't like about some communication methods.

Michelle was a sign language instructor, so she likes sign language and is very fluent signing while speaking. I find it amazing, really. So far, I have enjoyed signing with Harlie very much. And, while it certainly has a major negative (not everyone knows sign) it provides the "easiest" form of communication for my family (I believe) so far. So, we have decided for now that signing will be our main form of communication. And when right, we'll start to look at some communication devices (computers) for the future.

Please keep in mind that for the past 6 months, we believed that Harlie would be decanned this spring or summer and verbal communication would be right around the corner. Ha! While that was naive, and probably pretty stupid on our part, it is what we desperately wanted. So, now that we know her next jaw reconstruction will be in September, it will be spring or summer 2010 before that will be a possibility again. So, we have to look a little more long-term and right now, signing is the best means of communication for her and our family.

This means that we have to learn to sign while we are speaking all the time so she can see us using it and so she can better learn - not only signs - but language development. This is called "modeling". And this is also very important because as she gets older, her frustrations will grow if she can't communicate her needs/wants to us, causing unwanted behavior issues.

While Harlie wanted to leave to go home (which she clearly communicated) as soon as she saw Michelle signing to her, she perked up. She watches the signs and immediately tries to do them herself. She knows what signing is and what she gets out of it. It makes me VERY happy to see her communicating and it is so exciting to think of all she will be able to say!! Michelle showed me some tips on how to teach her to string the signs together (important for language development) and by the end of the appointment she signed "I want to go home" vs. "home" and "hat". Crazy, isn't it?!?! And while it might not seem important for her to sign sentences since I clearly understood her when she signed just two words, it makes a huge difference when she can verbalize. Which, we will still continue to work on. Ideally, she will learn to verbalize and sign at the same time, just like us, until signing isn't necessary anymore (down the road a bit, of course).

So, what does this mean to those that see Harlie on a regular basis? Yep, I'm going to ask you to please learn some sign so not only you can communicate with her - but so she can communicate with you. It's a toddler vocabulary, so it's really not difficult. In fact, it is quite fun - especially when you can understand her. So, to all my family and friends, let's talk about this more in person. You won't find a more appreciative person around - I promise! I'm talking about me, of course!

~Christy

We have a surgery date!

Yesterday, Murphy had his 4 year check up. He got 6 shots and peed in a cup. The doctor asked Murphy questions and Murphy answered them without any help. It was so funny to hear their conversation. He is getting so big! Of course Murphy goes to the same pediatrician as Harlie, so it is really interesting to have two totally different kids – one that is completely average and normal (50th percentile in height and weight) and one that doesn’t follow any normals at all. I know our doc appreciates the break!

While we were at the doctor’s office our speech therapist came for Harlie’s weekly session. Brandy told me it was the best session yet. Harlie totally has the Go Talk down pat. She presses the picture of the toy she wants to play with and understands the concept. Beth (her speech therapist) taught her the sign for “help”. Brandy said she caught on immediately. Then she said that she and Beth were talking and Harlie was trying to get some legos unstuck. Harlie signed “help”, but they didn’t immediately help her so Harlie then signed “help” and then signed “please”.

And the other day she came up to me and signed “mama”. Well, I didn’t stop what I was doing, so she started signing “mama” faster and with a little attitude, like she was yelling at me. It was so funny. I’ll have to write down all the signs that she knows. I will bet that it is well over 40 by now. At this point, I need to make more of an effort to learn more myself so I can teach her. She is very ready to learn more. So, I’ve just been trying to teach her to put several signs together. It looks like she’s picking that up without much problem. She says “please” without being asked, and uses it correctly. Heck, I still have to remind Murphy to say it.

Oh, and we have a surgery date for Harlie’s bone graft jaw reconstruction. It is June 3rd. It feels good to have an official date now. Now we can start to make some plans. I am assuming she’ll be there 3-4 days or so. I have no idea what the rooms are like. I did find out that parents cannot sleep in the PICU, which is where she’ll go after surgery. Luckily the Ronald McDonald House is across the street, so now I can call and see about reservations there.

Well that’s it for now. As always, thanks for checking in!

Take care,
Christy