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
Showing posts with label PMV. Show all posts
Showing posts with label PMV. Show all posts
Monday, January 2, 2012
Friday, November 11, 2011
Worries...
I don't know where to start. So many things are stressing me out lately. Maybe if I list them out, it will help me organize my thoughts and worries.
1. Harlie's IEP (individual education plan) changes (which we are currently working on).
2. Harlie's medical issues at school.
3. Cooper's preschool issues.
4. Nursing schedules.
5. Jaw surgery for Harlie - working on second opinions.
There's more, but those are the biggest right now.
I'll start with Item #2. Harlie's medical issues at school.
Did I tell you that we found a new nurse? I can't remember. Anyway, Terri's been with us for 2 weeks now (which I think is 6 days of working so far). So, yesterday (Thursday) I told Terri to take Harlie's cap to school and put it on her for an hour at a time to see how she does.
A cap is a piece of plastic that goes over the trach, and completely stops any air from being able to go in or out, forcing her to breathe through her mouth and nose. We put it on her Wednesday after school and she did great! It is much harder to inhale for her than to exhale, so that's the real test. Anyway, so following my instructions, she waited till Harlie got settled in, and went to put it on her. Harlie's interpreter saw what she was doing, and told Terri she could not put it on her because she needed to have her PMV (or speaking valve) on to talk. Terri, being new and not wanting to rock the boat, didn't want to argue with her, so she put the cap away, and put her PMV back on Harlie.
To give you a little education - the trach is located below your vocal cords. Your vocal cords work by air passing through, causing a vibration. Air passes through them when you breathe. But, since the trach is below the vocal cords, air doesn't get a chance to travel through them. So, no sound can be made.
The PMV is a one-way valve that allows air IN through the trach but not OUT. That forces the air to exit via the mouth and nose, which means air now can travel through the vocal cords, thus sound can be made. Which is also why the PMV is called a speaking valve. It is called a PMV (Passy Muir Valve) for the people who invented it.
Now, put a cap on the trach and ALL the air travels through the mouth and nose (just like a normal person), which means air travels through the vocal cords, and sound can be made.
So, as you can now see, the interpreter telling Harlie's nurse to not put the cap on was completely WRONG. She can speak with either on. But there are more important issues here...
1. There is not another person in that entire school that knows what Harlie needs medically. And I realize that there is no way that her interpreter should know all that stuff. Which means she has NO business telling Harlie's nurse anything when it comes to her medical care. Period.
2. Several staff members have already questioned her nurses on several different things. And I don't mean, "Oh, so why do you have to do that?" I mean, "What are you doing and do you have to do it now?" I can't tell you how bad it could be if Harlie's nurses had to consider the staff member's reactions every time she had to do something with Harlie. That is a very dangerous road to go down - it's something simple today, something life threatening later. And I just cannot allow it. We (her nurses and I) are very respectful when we have to enter the classroom. But that respect needs to go both ways. And let me just tell you - none of us want to be there. I wish we weren't needed.
3. If her nurses don't feel comfortable there - they will quit. And I will be pissed. We need our nurses. And I know they get paid squat. I want them to like this job. I want them to be happy. And if they feel like every time they have to do something with Harlie that they are making someone mad or uncomfortable, they won't want to do it at all. Not a good situation at all.
So, I sent an e-mail about this last night. And for some reason it didn't go through. So, I had to send it again this afternoon. Hopefully we can reach an agreement that we all just need to get along and work together as a team. After all, we all want the same thing - for Harlie to be able to learn and be safe at the same time.
On the same medical issues subject.... I received a call today from a nurse with the school system. She is a registered nurse (RN) and wanted me to know that they wanted Harlie's teacher to know how to suction Harlie, should there ever be an emergency and Harlie's nurse was unable for whatever reason (she was in the bathroom, which is down the hall, for example). BUT, she said that since her teacher is not an RN she was not allowed to suction past the opening of the trach. Which basically means she's not allowed to suction at all. So, the whole training thing is pointless.
Suctioning means you're using a catheter and inserting it in the trach tube (cannula) to suction out mucus from the cannula which is about 6mm long. So, if Harlie has a mucus plug (a sticky ball of mucus that gets stuck in the cannula) and Harlie is unable to cough it up to the opening of the trach, she is not allowed to insert the catheter deep enough to suck up the mucus plug. So, should Harlie not be able to breathe because of this plug, she won't be able to do anything to help her.
And this, my friends, is County policy.
So, I told this nurse that this policy is the same as telling a mother that if their child chokes on a hot dog at lunch, they will only be able to do the Heimlich Maneuver halfway. What about CPR? Only halfway, too?
What the hell kind of policy is that?!?!?
So, she says, "well in a real emergency, we would do whatever we had to do." Really? I told her I was hardly comforted by that, since the policy covers their ass from having to do anything. Well, okay, I didn't say "ass." But, I told her I was not comfortable with that policy. It makes NO sense!!! Who in the hell wrote that? Certainly not a physician or anyone who has ever worked with trachs before.
It's actually quite scary. But, clearly, not a concern for 99.9% of the moms of kids who go to school. Just me and a few others scattered about the entire county. Oh brother.
While I realize (and pray) that the scenario of Harlie's nurse being unable to suction, and Harlie being unable to breathe is slim to none, the fact that that policy exists is extremely bothersome to me. Clearly, I have to make some phone calls. Great. Add that to my list.
Which reminds me, Cooper and I were coming home from preschool the other day when he says, "Mommy, I want chicken nuggets and french fries." And I say, "But we don't have chicken nuggets and french fries." And he said, "Whaaaat?! Oh, great."
So, last night I was supposed to go down to the Expo, pick up my race packet and then head over to a friend's house with my running group and have dinner to carb load and have fun. But, I was so upset over what happened yesterday, and I knew I had to send out that e-mail stat, that I just couldn't change gears, and go out and have fun like I was totally fine. Because I wasn't. Too many issues to worry with that I just WISH I DIDN'T HAVE TO WORRY ABOUT!!!
And I can feel how tense I am. And it feels awful. Luckily, I got a massage gift certificate for my birthday. OH! I haven't been able to tell you about that yet! If you know that my birthday is in December, you might be confused. I'll clear that up soon. I hope.
So, the Half Marathon is tomorrow. And I just haven't had the energy or the time to be able to get excited. Which stinks. I hate to be a complainer - but the past 9 weeks have been really difficult and straining. I always feel like I'm on the verge of tears. And I really am pleased with how well Harlie's doing. But I get constant reminders of all she and we have lost and how difficult things are going to be for many more years. And I just wish I could be a regular mom sometimes. One who doesn't have to worry about suctioning or stupid policies that would endanger my daughter's life.
I was feeling particularly down this afternoon as I was racing to the Expo to get my packet. I was late (as usual, despite all my efforts) and my friend Heather called and said she already picked up my packet - and switched my bib from the full marathon to the half for me. Awesome.
I don't know what I'd do without my friends. Especially Heather. When I feel like crap, she makes me laugh. And then I feel like myself again. If only for a brief moment.
So, from this point forward, I am going to relax, and think about running with my friends - Heather, Niki and Natalie - and having fun. I will run in this beautiful fall weather and I will soak in the cheering of the crowd. And I will have fun. And I will not worry about my time, because we'll probably gab the whole race.
And then later on that night we'll go to dinner with my running group. I hope. Because I just got a call from my nurse and she cancelled on me. So, now I hope I can talk one of my other nurses into coming. UGH!!!!!
Seriously, I'm going to have a GREAT time tomorrow. I'll tell you all about it later.
Thanks for reading. And thanks for always being here for me when I need to talk.
~Christy xo
1. Harlie's IEP (individual education plan) changes (which we are currently working on).
2. Harlie's medical issues at school.
3. Cooper's preschool issues.
4. Nursing schedules.
5. Jaw surgery for Harlie - working on second opinions.
There's more, but those are the biggest right now.
I'll start with Item #2. Harlie's medical issues at school.
Did I tell you that we found a new nurse? I can't remember. Anyway, Terri's been with us for 2 weeks now (which I think is 6 days of working so far). So, yesterday (Thursday) I told Terri to take Harlie's cap to school and put it on her for an hour at a time to see how she does.
A cap is a piece of plastic that goes over the trach, and completely stops any air from being able to go in or out, forcing her to breathe through her mouth and nose. We put it on her Wednesday after school and she did great! It is much harder to inhale for her than to exhale, so that's the real test. Anyway, so following my instructions, she waited till Harlie got settled in, and went to put it on her. Harlie's interpreter saw what she was doing, and told Terri she could not put it on her because she needed to have her PMV (or speaking valve) on to talk. Terri, being new and not wanting to rock the boat, didn't want to argue with her, so she put the cap away, and put her PMV back on Harlie.
To give you a little education - the trach is located below your vocal cords. Your vocal cords work by air passing through, causing a vibration. Air passes through them when you breathe. But, since the trach is below the vocal cords, air doesn't get a chance to travel through them. So, no sound can be made.
The PMV is a one-way valve that allows air IN through the trach but not OUT. That forces the air to exit via the mouth and nose, which means air now can travel through the vocal cords, thus sound can be made. Which is also why the PMV is called a speaking valve. It is called a PMV (Passy Muir Valve) for the people who invented it.
Now, put a cap on the trach and ALL the air travels through the mouth and nose (just like a normal person), which means air travels through the vocal cords, and sound can be made.
So, as you can now see, the interpreter telling Harlie's nurse to not put the cap on was completely WRONG. She can speak with either on. But there are more important issues here...
1. There is not another person in that entire school that knows what Harlie needs medically. And I realize that there is no way that her interpreter should know all that stuff. Which means she has NO business telling Harlie's nurse anything when it comes to her medical care. Period.
2. Several staff members have already questioned her nurses on several different things. And I don't mean, "Oh, so why do you have to do that?" I mean, "What are you doing and do you have to do it now?" I can't tell you how bad it could be if Harlie's nurses had to consider the staff member's reactions every time she had to do something with Harlie. That is a very dangerous road to go down - it's something simple today, something life threatening later. And I just cannot allow it. We (her nurses and I) are very respectful when we have to enter the classroom. But that respect needs to go both ways. And let me just tell you - none of us want to be there. I wish we weren't needed.
3. If her nurses don't feel comfortable there - they will quit. And I will be pissed. We need our nurses. And I know they get paid squat. I want them to like this job. I want them to be happy. And if they feel like every time they have to do something with Harlie that they are making someone mad or uncomfortable, they won't want to do it at all. Not a good situation at all.
So, I sent an e-mail about this last night. And for some reason it didn't go through. So, I had to send it again this afternoon. Hopefully we can reach an agreement that we all just need to get along and work together as a team. After all, we all want the same thing - for Harlie to be able to learn and be safe at the same time.
On the same medical issues subject.... I received a call today from a nurse with the school system. She is a registered nurse (RN) and wanted me to know that they wanted Harlie's teacher to know how to suction Harlie, should there ever be an emergency and Harlie's nurse was unable for whatever reason (she was in the bathroom, which is down the hall, for example). BUT, she said that since her teacher is not an RN she was not allowed to suction past the opening of the trach. Which basically means she's not allowed to suction at all. So, the whole training thing is pointless.
Suctioning means you're using a catheter and inserting it in the trach tube (cannula) to suction out mucus from the cannula which is about 6mm long. So, if Harlie has a mucus plug (a sticky ball of mucus that gets stuck in the cannula) and Harlie is unable to cough it up to the opening of the trach, she is not allowed to insert the catheter deep enough to suck up the mucus plug. So, should Harlie not be able to breathe because of this plug, she won't be able to do anything to help her.
And this, my friends, is County policy.
So, I told this nurse that this policy is the same as telling a mother that if their child chokes on a hot dog at lunch, they will only be able to do the Heimlich Maneuver halfway. What about CPR? Only halfway, too?
What the hell kind of policy is that?!?!?
So, she says, "well in a real emergency, we would do whatever we had to do." Really? I told her I was hardly comforted by that, since the policy covers their ass from having to do anything. Well, okay, I didn't say "ass." But, I told her I was not comfortable with that policy. It makes NO sense!!! Who in the hell wrote that? Certainly not a physician or anyone who has ever worked with trachs before.
It's actually quite scary. But, clearly, not a concern for 99.9% of the moms of kids who go to school. Just me and a few others scattered about the entire county. Oh brother.
While I realize (and pray) that the scenario of Harlie's nurse being unable to suction, and Harlie being unable to breathe is slim to none, the fact that that policy exists is extremely bothersome to me. Clearly, I have to make some phone calls. Great. Add that to my list.
Which reminds me, Cooper and I were coming home from preschool the other day when he says, "Mommy, I want chicken nuggets and french fries." And I say, "But we don't have chicken nuggets and french fries." And he said, "Whaaaat?! Oh, great."
So, last night I was supposed to go down to the Expo, pick up my race packet and then head over to a friend's house with my running group and have dinner to carb load and have fun. But, I was so upset over what happened yesterday, and I knew I had to send out that e-mail stat, that I just couldn't change gears, and go out and have fun like I was totally fine. Because I wasn't. Too many issues to worry with that I just WISH I DIDN'T HAVE TO WORRY ABOUT!!!
And I can feel how tense I am. And it feels awful. Luckily, I got a massage gift certificate for my birthday. OH! I haven't been able to tell you about that yet! If you know that my birthday is in December, you might be confused. I'll clear that up soon. I hope.
So, the Half Marathon is tomorrow. And I just haven't had the energy or the time to be able to get excited. Which stinks. I hate to be a complainer - but the past 9 weeks have been really difficult and straining. I always feel like I'm on the verge of tears. And I really am pleased with how well Harlie's doing. But I get constant reminders of all she and we have lost and how difficult things are going to be for many more years. And I just wish I could be a regular mom sometimes. One who doesn't have to worry about suctioning or stupid policies that would endanger my daughter's life.
I was feeling particularly down this afternoon as I was racing to the Expo to get my packet. I was late (as usual, despite all my efforts) and my friend Heather called and said she already picked up my packet - and switched my bib from the full marathon to the half for me. Awesome.
I don't know what I'd do without my friends. Especially Heather. When I feel like crap, she makes me laugh. And then I feel like myself again. If only for a brief moment.
So, from this point forward, I am going to relax, and think about running with my friends - Heather, Niki and Natalie - and having fun. I will run in this beautiful fall weather and I will soak in the cheering of the crowd. And I will have fun. And I will not worry about my time, because we'll probably gab the whole race.
And then later on that night we'll go to dinner with my running group. I hope. Because I just got a call from my nurse and she cancelled on me. So, now I hope I can talk one of my other nurses into coming. UGH!!!!!
Seriously, I'm going to have a GREAT time tomorrow. I'll tell you all about it later.
Thanks for reading. And thanks for always being here for me when I need to talk.
~Christy xo
Sunday, October 30, 2011
Harlie's 5th Birthday Party
Just trying to get caught up... yes, her birthday was over a month ago.
Here are some photos from Harlie's 5th birthday party. We had it at The Little Gym because we could tailor it more to what Harlie was allowed to do physically, since her spinal fusion. We kinda didn't follow the rules, exactly, and let her hang from her arms a bit. I wanted to keep the party kinda small. And I wanted to promote some relationship building with her classmates. So, we invited all the girls from her class (most were able to come) and some friends that are about her age. Of course, the boys are Murphy and Cooper.
Can you believe how much shorter she is than everyone?
Aside from Peyton (in the yellow dress) and Cooper and Murphy, of course, all those kids are in kindergarten. And Peyton is three and she's taller than Harlie. Heck, Cooper is only two inches shorter than her. He is totally going to pass her. And that's going to be really weird. At the pool this summer I was asked if Harlie and Cooper were twins. Oh my sweet little girl.
This is the point when we just couldn't tell her no.
But look how happy she is! How could we deny her that on her own birthday?
Monkey see, monkey do...
Harlie signing "bubbles"...
Harlie's "cake."
This was the first time she's ever blown out her own candles!!! And I wasn't expecting it, so I didn't capture it on film. Darn it! She really did great! And those of us there that understood what just happened were like, "YAY HARLIE!!!" And I'm sure the kids were like, "What's the big deal? She just blew out her candles." Ahhh, it's the little things.
That PMV (the purple thing on her trach - it allows her to inhale through the trach, but then closes, which forces the air out of her mouth and nose. This allows air to go through the vocal chords, which is how you produce sound) has been AMAZING! We have been working so hard to get her to tolerate it for years and years. And it is finally paying off! She's actually quite loud now. And it allowed her to blow out her candles! And it makes her sneezes sound like the cutest thing you've ever heard! The first time I heard her sneeze while wearing it - I cried. It was the sweetest sound!
And speaking of her PMV, I heard from a representative from their company recently and she wants me to submit a little write up about Harlie and her PMV to be included under their Patient Stories section. YAY! I'm so honored! So, she sent Harlie a little package this week and this is what Harlie did for the first time (thanks to the PMV)....
Thank you so much, Julie! I am so grateful for a product like this! Yet I have a love/hate relationship with the trach. Weird.
Well, hopefully I'll have more posts soon...
Thanks!
~Christy
Here are some photos from Harlie's 5th birthday party. We had it at The Little Gym because we could tailor it more to what Harlie was allowed to do physically, since her spinal fusion. We kinda didn't follow the rules, exactly, and let her hang from her arms a bit. I wanted to keep the party kinda small. And I wanted to promote some relationship building with her classmates. So, we invited all the girls from her class (most were able to come) and some friends that are about her age. Of course, the boys are Murphy and Cooper.
Can you believe how much shorter she is than everyone?
Aside from Peyton (in the yellow dress) and Cooper and Murphy, of course, all those kids are in kindergarten. And Peyton is three and she's taller than Harlie. Heck, Cooper is only two inches shorter than her. He is totally going to pass her. And that's going to be really weird. At the pool this summer I was asked if Harlie and Cooper were twins. Oh my sweet little girl.
This is the point when we just couldn't tell her no.
But look how happy she is! How could we deny her that on her own birthday?
Monkey see, monkey do...
Harlie signing "bubbles"...
Harlie's "cake."
This was the first time she's ever blown out her own candles!!! And I wasn't expecting it, so I didn't capture it on film. Darn it! She really did great! And those of us there that understood what just happened were like, "YAY HARLIE!!!" And I'm sure the kids were like, "What's the big deal? She just blew out her candles." Ahhh, it's the little things.
That PMV (the purple thing on her trach - it allows her to inhale through the trach, but then closes, which forces the air out of her mouth and nose. This allows air to go through the vocal chords, which is how you produce sound) has been AMAZING! We have been working so hard to get her to tolerate it for years and years. And it is finally paying off! She's actually quite loud now. And it allowed her to blow out her candles! And it makes her sneezes sound like the cutest thing you've ever heard! The first time I heard her sneeze while wearing it - I cried. It was the sweetest sound!
And speaking of her PMV, I heard from a representative from their company recently and she wants me to submit a little write up about Harlie and her PMV to be included under their Patient Stories section. YAY! I'm so honored! So, she sent Harlie a little package this week and this is what Harlie did for the first time (thanks to the PMV)....
Thank you so much, Julie! I am so grateful for a product like this! Yet I have a love/hate relationship with the trach. Weird.
Well, hopefully I'll have more posts soon...
Thanks!
~Christy
Monday, September 12, 2011
Quick Update
So much to blog, so little time...
Murphy
I can't remember if I told you that we had not restarted Murphy's ADD meds. He gained four pounds over the summer (and he's still super skinny) and we were so enjoying having him hungry!!! So, we were going to see if he could be successful without the meds since his teacher/class this year is a better fit (a calmer, less stimulating environment) for him.
I e-mailed his teacher Wednesday night (day 2) and let her know of his ADD diagnosis last year and that we had not restarted his meds and we would appreciate her feedback. She e-mailed me back that he was doing "fine in some areas but having difficulty in others." She said she wanted to meet with me or talk over the phone. Darn it!!!
So, she called that afternoon and told me that he is a very sweet, respectful, social and likable kid. But, that he cannot stay focused. She said that he plays with the stuff in his desk. When she was explaining something, she looked over and saw Murphy using two glue sticks as binoculars. He clearly was not listening to a thing she was saying.
So, on Friday, we gave him his meds and sent him on his way. The good news is that afternoon his teacher e-mailed me and said that he was so much better that day and that he was calm, focused, helpful and one of the best students in class!!! At least we KNOW he needs the meds. No more second-guessing ourselves on this one!
The bad news is that all day on Friday he only ate a few carrot sticks and a half of a granola bar. All day! It sucks that we have to chose between learning and nutrition. They are both important!!!
Harlie
Kindergarten is going well for her, I think. She seems to like it. But, of course she can't tell me all about it. Although I am THRILLED to report that she has been wearing her speaking valve (PMV) and she has been making a huge effort to verbalize. The other day I asked her if she had a good day and she SAID - clear as a bell, "good day." Murphy was in the kitchen and he could hear and understand her perfectly! That was so awesome to hear!!!
There are some kinks to work out (which is totally expected). Unfortunately, her communication device isn't being used the way it should. And even more unfortunately, it's going to take some effort to get that to change. After I found out they went all week without using her device I e-mailed her teacher that we need to have an IEP meeting. The bad thing is that we had her last IEP meeting before we made the big decision to pursue using her device as a main means of communication. So, she has been assigned a sign language interpreter. But, that's not what she needs. She can hear with her hearing aide on. She just needs someone to help her use the device to speak. So, we'll see what happens...
She missed the bus this morning. Her original pick-up time was 6:48am. On Thursday we were told the new pick-up time (starting Monday) would be 6:53am (YAY!). So, this morning we went out at 6:53 and she was driving away.
The worst thing about this was that it was the one day that I had a commitment to be somewhere at 9am and it was an hour's drive to get there. So, when she missed the bus at almost 7am, I still had to get a shower and get ready AND drive them to school (in the opposite direction of where I needed to go). Oh, and my gas light was on, so I had to stop for gas. Considering I woke up at 5:30 to start working on getting her up and ready (I wake her at 6am after I give her a breathing treatment and meds) it was a busy morning and not a good one to miss the bus - it really stressed me out. I felt so horrible that we didn't try harder to be at the end of the driveway. But, we were feeding her breakfast and then on the way to the door Harlie said she had to go potty.
As it turns out, Brandy found out that after they told us our new pick-up time was 6:53, it got changed to 6:41!!! And no one told us. But the driver came at 6:48 and then waited the required TWO minutes and then left. UGH!!!
So far there are a lot of issues with riding the bus. And they are making me feel very stressed. But, I really don't want to commit to driving them everyday. So, I'm going to call Transportation tomorrow and see if they can do anything to fix the issues and make riding the bus a little more bearable. As it stands right now - she spends TWO hours a day on the bus!!! Doesn't that sound like it's too much?!?!?
I am also worried about the playground. Jennifer went to school with her on Friday and she said that she was run over by the other kids. She tried to help her play, but she's so slow compared to the other kids so they just run right over top of her. Jennifer said that she and the other little girl that's hearing impaired gave up and just went and sat on the steps. Ugh.
Tom measured the kids the other night on our measuring wall upstairs. Cooper is one inch shorter than Harlie (and he's two years younger) and Harlie is SIX inches shorter than what Murphy was when he started Kindergarten.
Oh! And Harlie lost her first tooth - naturally!!! She's lost four in the past, but they were all due to surgical issues. This is not the best picture - but it's all I got. She didn't quite understand what all the fuss was about and had no interest in showing her teeth to the camera.
The picture was taken during a feeding. Here are more photos from that awesome (note the heavy sarcasm) feeding session:
Honestly, I don't know who hates oral feedings more - me or her?
Cooper
Tomorrow is Cooper's first day at his new preschool!!!! WOOHOO!!! My house is a wreck, Harlie's food supply is low, laundry is piled high and paperwork is out of control. Oh I can't wait to get some things accomplished around here!!!! And I hope he really likes it, too.
Well, that's it for now. More later!
Thanks!
~Christy
Murphy
I can't remember if I told you that we had not restarted Murphy's ADD meds. He gained four pounds over the summer (and he's still super skinny) and we were so enjoying having him hungry!!! So, we were going to see if he could be successful without the meds since his teacher/class this year is a better fit (a calmer, less stimulating environment) for him.
I e-mailed his teacher Wednesday night (day 2) and let her know of his ADD diagnosis last year and that we had not restarted his meds and we would appreciate her feedback. She e-mailed me back that he was doing "fine in some areas but having difficulty in others." She said she wanted to meet with me or talk over the phone. Darn it!!!
So, she called that afternoon and told me that he is a very sweet, respectful, social and likable kid. But, that he cannot stay focused. She said that he plays with the stuff in his desk. When she was explaining something, she looked over and saw Murphy using two glue sticks as binoculars. He clearly was not listening to a thing she was saying.
So, on Friday, we gave him his meds and sent him on his way. The good news is that afternoon his teacher e-mailed me and said that he was so much better that day and that he was calm, focused, helpful and one of the best students in class!!! At least we KNOW he needs the meds. No more second-guessing ourselves on this one!
The bad news is that all day on Friday he only ate a few carrot sticks and a half of a granola bar. All day! It sucks that we have to chose between learning and nutrition. They are both important!!!
Harlie
Kindergarten is going well for her, I think. She seems to like it. But, of course she can't tell me all about it. Although I am THRILLED to report that she has been wearing her speaking valve (PMV) and she has been making a huge effort to verbalize. The other day I asked her if she had a good day and she SAID - clear as a bell, "good day." Murphy was in the kitchen and he could hear and understand her perfectly! That was so awesome to hear!!!
There are some kinks to work out (which is totally expected). Unfortunately, her communication device isn't being used the way it should. And even more unfortunately, it's going to take some effort to get that to change. After I found out they went all week without using her device I e-mailed her teacher that we need to have an IEP meeting. The bad thing is that we had her last IEP meeting before we made the big decision to pursue using her device as a main means of communication. So, she has been assigned a sign language interpreter. But, that's not what she needs. She can hear with her hearing aide on. She just needs someone to help her use the device to speak. So, we'll see what happens...
She missed the bus this morning. Her original pick-up time was 6:48am. On Thursday we were told the new pick-up time (starting Monday) would be 6:53am (YAY!). So, this morning we went out at 6:53 and she was driving away.
The worst thing about this was that it was the one day that I had a commitment to be somewhere at 9am and it was an hour's drive to get there. So, when she missed the bus at almost 7am, I still had to get a shower and get ready AND drive them to school (in the opposite direction of where I needed to go). Oh, and my gas light was on, so I had to stop for gas. Considering I woke up at 5:30 to start working on getting her up and ready (I wake her at 6am after I give her a breathing treatment and meds) it was a busy morning and not a good one to miss the bus - it really stressed me out. I felt so horrible that we didn't try harder to be at the end of the driveway. But, we were feeding her breakfast and then on the way to the door Harlie said she had to go potty.
As it turns out, Brandy found out that after they told us our new pick-up time was 6:53, it got changed to 6:41!!! And no one told us. But the driver came at 6:48 and then waited the required TWO minutes and then left. UGH!!!
So far there are a lot of issues with riding the bus. And they are making me feel very stressed. But, I really don't want to commit to driving them everyday. So, I'm going to call Transportation tomorrow and see if they can do anything to fix the issues and make riding the bus a little more bearable. As it stands right now - she spends TWO hours a day on the bus!!! Doesn't that sound like it's too much?!?!?
I am also worried about the playground. Jennifer went to school with her on Friday and she said that she was run over by the other kids. She tried to help her play, but she's so slow compared to the other kids so they just run right over top of her. Jennifer said that she and the other little girl that's hearing impaired gave up and just went and sat on the steps. Ugh.
Tom measured the kids the other night on our measuring wall upstairs. Cooper is one inch shorter than Harlie (and he's two years younger) and Harlie is SIX inches shorter than what Murphy was when he started Kindergarten.
Oh! And Harlie lost her first tooth - naturally!!! She's lost four in the past, but they were all due to surgical issues. This is not the best picture - but it's all I got. She didn't quite understand what all the fuss was about and had no interest in showing her teeth to the camera.
The picture was taken during a feeding. Here are more photos from that awesome (note the heavy sarcasm) feeding session:
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| Are you still here? |
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| Why do you make me eat this crap? |
Cooper
Tomorrow is Cooper's first day at his new preschool!!!! WOOHOO!!! My house is a wreck, Harlie's food supply is low, laundry is piled high and paperwork is out of control. Oh I can't wait to get some things accomplished around here!!!! And I hope he really likes it, too.
Well, that's it for now. More later!
Thanks!
~Christy
Wednesday, June 22, 2011
Bummed
Yes. I'm bummed. Today's appointment did not go the way I wanted. And we are not officially capping.
Her doc used a pressure gauge to see what her breathing looked like (how hard she had to work to inhale and exhale). It was a piece of hard, clear plastic that attached to her trach and had a tube coming off the side of the plastic, which was attached to the actual gauge. The hard, clear plastic part was a couple of inches long and one end attaches to the trach and the PMV went on the other end. As she inhaled through the PMV, the gauge measured the pressure. While wearing the PMV the pressures were GREAT! Not that I was surprised, of course, because she wears it just fine (with no distress) for most of the day.
So, after that was measured, we took the PMV off and blocked the end so that she would have to breathe both in AND out through her mouth and nose. And she didn't do so well with that one.
But, I have to wonder about the amount of dead air space in the clear plastic piece and tubing to the gauge. In order for the air to exit her body - it has to fill up all the dead ends before it finds it's way out. It's always going to follow the path of least resistance. There was a lot of dead space with all that plastic. If you just block the trach off at the entrance to the trach, there is VERY little dead space in the cannula itself (the part you can't see - that's in her trachea). So ALL of her air goes out and in the same way.
I know this might not make sense. But, just trust me that I believe I'm right.
One reason is that it just makes sense to me. I might not be doing the best job of explaining it in writing, but it does. Another reason might be that I have to hold on to a sliver of hope that we can still make progress - or that progress was made after her last jaw reconstruction. So, I'm hoping that dead space is the reason why she didn't do well and if you take the dead space away, she'll do better.
The third reason why I think it makes a difference is because I actually have a cap in my possession (shhhh - don't tell anyone) and I've already put it on her, while monitoring her oxygen saturation levels and heart rate and she did GREAT! No lie - no exaggeration.
The reason why I have a cap is because I had NO idea that getting a cap would be so hard and that we would have to go through so much. I thought it would be just like the PMV, which was ordered, and delivered with instructions to start using it for 3 seconds at a time. Yes, you read that right. We started with 3 seconds!!! And then slowly (very slowly) built up her tolerance over a lot (like years) of time. After only breathing through a trach (which is less "work" for her) it is hard and weird to learn to breathe through your mouth and nose. And it takes more work. Which is why you have to get them used to it slowly.
I will not reveal how I acquired this cap - but trust me when I say that I honestly thought her ENT would be totally fine with me having one and trying it out on her. And I had the cap in my possession before I heard from her ENT that he wanted to go through certain hoops before giving me the okay to start capping her.
I don't necessarily mean to not follow doctor's orders. I mean, that certainly wasn't my intent. However, sometimes you just have to follow your gut and take some chances. It really started out so innocently. Which is why I couldn't bear to tell her ENT that I already have one and have used it!!!
And I promise that the second I read his e-mail that it wasn't so simple (which was weeks ago) - I backed off and became a lot more cautious. I think the risk with her is that she has other issues (heart and lung, to be exact) that breathing just a tad bit harder could have a negative chain reaction internally that could have horrible consequences. And we have come WAY too far to make a mistake like that.
It's just frustrating when I have seen her breathe just fine (that I could tell - with a pulse ox, too) but she didn't do that well today. I believe a lot of that is behavioral. There were three docs in the room and there was foreign equipment involved (on her trach no less, which I'm sure she's protective about).
I'm sure I looked crazy to the docs. Ugh!!! And what a horrible spot! I couldn't plead my case with evidence - because I couldn't admit that I had the evidence!!! Crap!!!!
So, the plan is to do a sleep study this summer. If she can tolerate the cap while sleeping - then we know she can tolerate it during the day. She will be monitored and sleeping, so that will take her behavior completely out of the equation. My only problem with this plan is that what if she can tolerate it during her waking hours, but not while sleeping? Because that's what I believe will happen. I think she might have to work a little harder for her air to get past the base of her tongue, so she won't be able to continue to work like that while sleeping.
Ugh. I don't know.
The other thing I didn't get to blog about is something pretty cool that happened a while ago (this is my "fairly exciting" news that I mentioned in this post). One night after Harlie fell asleep, we blocked her trach with the obturator (it's a plastic tube that goes in the trach that acts as a guide to help you make sure that you get the trach in correctly - but as soon as the trach is in place, you pull it out so the person can breathe). The exciting thing is that she continued to breathe - without skipping a beat - with little to no difficulty. We stood there and watched her for 4 minutes and her sats and heart rate stayed the same! I was so excited!
But, I know that 4 minutes doesn't mean decannulation. But it renewed my hope that we are making progress and that her last jaw reconstruction was beneficial in some way.
So, we'll just have to see how the sleep study goes. Even if it doesn't go the way I want - it will give us some accurate data so that we know where we stand. And if nothing else, will give us baseline measurements should we have to compare things down the road.
I'm going to test her a few times with the cap while she's sleeping to see what happens. Part of me says that if she doesn't do well at home then why go to the hospital for a sleep study?
And then all of these thoughts and developments (if you can call them that) have lead us to start thinking about her next jaw surgery. I'll have to explain more in another post. But, know that we will be exploring all our options, which means looking at other surgeons (in other states), before we put her through a third jaw reconstruction.
When I think about all this I feel so incredibly overwhelmed. Even after all the countless hours and effort we have put into getting her - and keeping her - healthy and functioning as normal as possible, we still have so, so far to go. There are so many times I wonder how in the world I'm going to have the energy. And how will this affect Murphy and Cooper? Or our marriage? Or more importantly, my ongoing desire to get a Pug puppy????
Seriously, with this life, can't a woman just have a freaking puppy???? Is that so much to ask? Geez.
Okay, thanks for reading. I really do have so much more to write. It looks like I'm getting my blogging groove back a little. So, check back soon!
Thanks!
~Christy
Her doc used a pressure gauge to see what her breathing looked like (how hard she had to work to inhale and exhale). It was a piece of hard, clear plastic that attached to her trach and had a tube coming off the side of the plastic, which was attached to the actual gauge. The hard, clear plastic part was a couple of inches long and one end attaches to the trach and the PMV went on the other end. As she inhaled through the PMV, the gauge measured the pressure. While wearing the PMV the pressures were GREAT! Not that I was surprised, of course, because she wears it just fine (with no distress) for most of the day.
So, after that was measured, we took the PMV off and blocked the end so that she would have to breathe both in AND out through her mouth and nose. And she didn't do so well with that one.
But, I have to wonder about the amount of dead air space in the clear plastic piece and tubing to the gauge. In order for the air to exit her body - it has to fill up all the dead ends before it finds it's way out. It's always going to follow the path of least resistance. There was a lot of dead space with all that plastic. If you just block the trach off at the entrance to the trach, there is VERY little dead space in the cannula itself (the part you can't see - that's in her trachea). So ALL of her air goes out and in the same way.
I know this might not make sense. But, just trust me that I believe I'm right.
One reason is that it just makes sense to me. I might not be doing the best job of explaining it in writing, but it does. Another reason might be that I have to hold on to a sliver of hope that we can still make progress - or that progress was made after her last jaw reconstruction. So, I'm hoping that dead space is the reason why she didn't do well and if you take the dead space away, she'll do better.
The third reason why I think it makes a difference is because I actually have a cap in my possession (shhhh - don't tell anyone) and I've already put it on her, while monitoring her oxygen saturation levels and heart rate and she did GREAT! No lie - no exaggeration.
The reason why I have a cap is because I had NO idea that getting a cap would be so hard and that we would have to go through so much. I thought it would be just like the PMV, which was ordered, and delivered with instructions to start using it for 3 seconds at a time. Yes, you read that right. We started with 3 seconds!!! And then slowly (very slowly) built up her tolerance over a lot (like years) of time. After only breathing through a trach (which is less "work" for her) it is hard and weird to learn to breathe through your mouth and nose. And it takes more work. Which is why you have to get them used to it slowly.
I will not reveal how I acquired this cap - but trust me when I say that I honestly thought her ENT would be totally fine with me having one and trying it out on her. And I had the cap in my possession before I heard from her ENT that he wanted to go through certain hoops before giving me the okay to start capping her.
I don't necessarily mean to not follow doctor's orders. I mean, that certainly wasn't my intent. However, sometimes you just have to follow your gut and take some chances. It really started out so innocently. Which is why I couldn't bear to tell her ENT that I already have one and have used it!!!
And I promise that the second I read his e-mail that it wasn't so simple (which was weeks ago) - I backed off and became a lot more cautious. I think the risk with her is that she has other issues (heart and lung, to be exact) that breathing just a tad bit harder could have a negative chain reaction internally that could have horrible consequences. And we have come WAY too far to make a mistake like that.
It's just frustrating when I have seen her breathe just fine (that I could tell - with a pulse ox, too) but she didn't do that well today. I believe a lot of that is behavioral. There were three docs in the room and there was foreign equipment involved (on her trach no less, which I'm sure she's protective about).
I'm sure I looked crazy to the docs. Ugh!!! And what a horrible spot! I couldn't plead my case with evidence - because I couldn't admit that I had the evidence!!! Crap!!!!
So, the plan is to do a sleep study this summer. If she can tolerate the cap while sleeping - then we know she can tolerate it during the day. She will be monitored and sleeping, so that will take her behavior completely out of the equation. My only problem with this plan is that what if she can tolerate it during her waking hours, but not while sleeping? Because that's what I believe will happen. I think she might have to work a little harder for her air to get past the base of her tongue, so she won't be able to continue to work like that while sleeping.
Ugh. I don't know.
The other thing I didn't get to blog about is something pretty cool that happened a while ago (this is my "fairly exciting" news that I mentioned in this post). One night after Harlie fell asleep, we blocked her trach with the obturator (it's a plastic tube that goes in the trach that acts as a guide to help you make sure that you get the trach in correctly - but as soon as the trach is in place, you pull it out so the person can breathe). The exciting thing is that she continued to breathe - without skipping a beat - with little to no difficulty. We stood there and watched her for 4 minutes and her sats and heart rate stayed the same! I was so excited!
But, I know that 4 minutes doesn't mean decannulation. But it renewed my hope that we are making progress and that her last jaw reconstruction was beneficial in some way.
So, we'll just have to see how the sleep study goes. Even if it doesn't go the way I want - it will give us some accurate data so that we know where we stand. And if nothing else, will give us baseline measurements should we have to compare things down the road.
I'm going to test her a few times with the cap while she's sleeping to see what happens. Part of me says that if she doesn't do well at home then why go to the hospital for a sleep study?
And then all of these thoughts and developments (if you can call them that) have lead us to start thinking about her next jaw surgery. I'll have to explain more in another post. But, know that we will be exploring all our options, which means looking at other surgeons (in other states), before we put her through a third jaw reconstruction.
When I think about all this I feel so incredibly overwhelmed. Even after all the countless hours and effort we have put into getting her - and keeping her - healthy and functioning as normal as possible, we still have so, so far to go. There are so many times I wonder how in the world I'm going to have the energy. And how will this affect Murphy and Cooper? Or our marriage? Or more importantly, my ongoing desire to get a Pug puppy????
Seriously, with this life, can't a woman just have a freaking puppy???? Is that so much to ask? Geez.
Okay, thanks for reading. I really do have so much more to write. It looks like I'm getting my blogging groove back a little. So, check back soon!
Thanks!
~Christy
Friday, January 14, 2011
One thing at a time.
We have a lot of goals for Harlie. There are lots of things we are always working on.
For example - eating, speaking, wearing her speaking valve, using her signs, maintaining eye contact during "conversation", using her communication device, listening, answering questions, saying good-bye and hello appropriately, using the potty consistently (we're there with occasional accidents), walking up and down the stairs independently and improving her gross motor skills. Just to name a few.
Now that she is four years old, I think I have finally figured out that it is better to tackle one major issue at a time. I mean, we still work on a lot of those things no matter what (like eating, or saying good-bye and hello) but the major things (like potty training or wearing her speaking valve) must be done one at a time. If I try to accomplish several of the major things at once, she fights me on everything. Even the little things. And then we are all miserable. At the end of the day, I was happy because I really believed I was doing all I could. I was fighting the good fight. And I would eventually, win, right?
Well, forget that. All I ended up doing was making her not want to spend anytime with me and wearing myself out in the process.
So, in light of recent potty training "success", and our feeding issues - I have put her speaking valve goals on the back burner. She wears it at school for her teachers, but won't wear it at home. Fine. I don't care. She's wearing it when it's most important, so it's still a win as far as I'm concerned.
Except for the fact that during the entire Christmas break she didn't wear it once. I did attempt to put it on her a couple of times - but she immediately took it off. Oh well.
So, today she goes to school. She puts it on while there. And right now it is 5:20pm and SHE IS STILL WEARING IT!!! She's worn it while coughing and she wore it during a wonderful feeding at 4pm.
Of course she's had an accident each day for the past three days in a row. And she is perfectly capable of being accident-free.
She is so hard to figure out.
For example - eating, speaking, wearing her speaking valve, using her signs, maintaining eye contact during "conversation", using her communication device, listening, answering questions, saying good-bye and hello appropriately, using the potty consistently (we're there with occasional accidents), walking up and down the stairs independently and improving her gross motor skills. Just to name a few.
Now that she is four years old, I think I have finally figured out that it is better to tackle one major issue at a time. I mean, we still work on a lot of those things no matter what (like eating, or saying good-bye and hello) but the major things (like potty training or wearing her speaking valve) must be done one at a time. If I try to accomplish several of the major things at once, she fights me on everything. Even the little things. And then we are all miserable. At the end of the day, I was happy because I really believed I was doing all I could. I was fighting the good fight. And I would eventually, win, right?
Well, forget that. All I ended up doing was making her not want to spend anytime with me and wearing myself out in the process.
So, in light of recent potty training "success", and our feeding issues - I have put her speaking valve goals on the back burner. She wears it at school for her teachers, but won't wear it at home. Fine. I don't care. She's wearing it when it's most important, so it's still a win as far as I'm concerned.
Except for the fact that during the entire Christmas break she didn't wear it once. I did attempt to put it on her a couple of times - but she immediately took it off. Oh well.
So, today she goes to school. She puts it on while there. And right now it is 5:20pm and SHE IS STILL WEARING IT!!! She's worn it while coughing and she wore it during a wonderful feeding at 4pm.
Of course she's had an accident each day for the past three days in a row. And she is perfectly capable of being accident-free.
She is so hard to figure out.
Thursday, September 30, 2010
Feeding Therapy Update
Harlie is feeling better and went back to school today. Today was Therapy Thursday, but her feeding therapist had to cancel and it was rainy and yucky outside, and I was feeling really crummy and tired, so I cancelled the rest of her therapies and sent her to school. She finally has a morning bus assigned (I've been taking her to school every morning, except for Fridays, when she takes the bus). It's confusing because her schedule is different on Thursdays and Fridays. She goes to school at different times during the week. It looks like she'll be taking the bus every morning starting next week, which is great. For one, she loves it. And for another, it will save me a ton of time every day. That will be a great relief.
I have a lot to catch you up on, but I'll start with Feeding Therapy for now.
She has been on the waiting list for the intensive feeding program here in Richmond. The feeding program is considered one of the best in the country and people travel from all over to attend. Entry into this program has been a goal of ours from very early on. Well, Harlie's name came up - and as crazy as it is - it turns out Harlie doesn't need it after all.
Seriously crazy.
So crazy, in fact, that it took me a few days to really come to grips with it. It's just weird. We've been talking about getting her to the point that she was a candidate for so long - it was kinda hard to accept. And, this is a GOOD thing. In fact, it's a GREAT thing (logistically I didn't know how we were going to do it anyway)! The whole point of intensive feeding therapy is to get the child to eat a variety of foods, and to wean from the feeding tube.
And can you believe it? We have done both!!! Now wait... I should clarify. We haven't completely weaned from her tube - but most days - she reaches her calorie goal - completely by mouth!!! It's exhausting (for all parties) to feed her four times a day (and sometimes we have to tube her depending on what's going on). The setting has to be "right." We have not tried oral feedings out in public yet. We are going to do that during therapy soon - we'll go into the cafeteria there and feed her and see how that goes. I'm expecting that to be quite challenging.
So, we are hardly weaned from the tube. But, we are so much closer than I ever thought we'd be. And intensive feeding therapy just isn't necessary at this time. I'm sure there will be plenty of opportunities. She still has to learn how to handle some texture - and we can't even think about chewing. Odds are she probably can't chew food until she has another jaw reconstruction to even out her jaw. Ugh.
I think we would all agree that feeding her is a joyful experience when she's a willing participant. But sometimes, she wants no part of it.
Nice, huh?
She's been wearing her PMV a lot more lately. She definitely does better at keeping it on during school than when she's at home. I know it's because she knows she can get away with it at home. But, there are only so many battles I can fight at one time. And I'm thinking the more she wears it at school, and sees that she can make sounds and get some attention, eventually getting her to keep it on all the time won't be a battle.
Here's her saying "dinosaur":
Pretty cute, huh? You should hear her say "all done." That is very clear. Hearing her voice is totally awesome. The other day, we went outside and she sneezed. And it was the first time I had ever heard her sneeze - like a real sneeze sound! It was so darn cute I stopped in my tracks. I wanted her to do it again. Talk about enjoying the little things!!!
Okay, that's it for tonight. I will post some birthday pics soon.
Thanks!
~Christy
I have a lot to catch you up on, but I'll start with Feeding Therapy for now.
She has been on the waiting list for the intensive feeding program here in Richmond. The feeding program is considered one of the best in the country and people travel from all over to attend. Entry into this program has been a goal of ours from very early on. Well, Harlie's name came up - and as crazy as it is - it turns out Harlie doesn't need it after all.
Seriously crazy.
So crazy, in fact, that it took me a few days to really come to grips with it. It's just weird. We've been talking about getting her to the point that she was a candidate for so long - it was kinda hard to accept. And, this is a GOOD thing. In fact, it's a GREAT thing (logistically I didn't know how we were going to do it anyway)! The whole point of intensive feeding therapy is to get the child to eat a variety of foods, and to wean from the feeding tube.
And can you believe it? We have done both!!! Now wait... I should clarify. We haven't completely weaned from her tube - but most days - she reaches her calorie goal - completely by mouth!!! It's exhausting (for all parties) to feed her four times a day (and sometimes we have to tube her depending on what's going on). The setting has to be "right." We have not tried oral feedings out in public yet. We are going to do that during therapy soon - we'll go into the cafeteria there and feed her and see how that goes. I'm expecting that to be quite challenging.
So, we are hardly weaned from the tube. But, we are so much closer than I ever thought we'd be. And intensive feeding therapy just isn't necessary at this time. I'm sure there will be plenty of opportunities. She still has to learn how to handle some texture - and we can't even think about chewing. Odds are she probably can't chew food until she has another jaw reconstruction to even out her jaw. Ugh.
I think we would all agree that feeding her is a joyful experience when she's a willing participant. But sometimes, she wants no part of it.
Nice, huh?
She's been wearing her PMV a lot more lately. She definitely does better at keeping it on during school than when she's at home. I know it's because she knows she can get away with it at home. But, there are only so many battles I can fight at one time. And I'm thinking the more she wears it at school, and sees that she can make sounds and get some attention, eventually getting her to keep it on all the time won't be a battle.
Here's her saying "dinosaur":
Pretty cute, huh? You should hear her say "all done." That is very clear. Hearing her voice is totally awesome. The other day, we went outside and she sneezed. And it was the first time I had ever heard her sneeze - like a real sneeze sound! It was so darn cute I stopped in my tracks. I wanted her to do it again. Talk about enjoying the little things!!!
Okay, that's it for tonight. I will post some birthday pics soon.
Thanks!
~Christy
Wednesday, September 15, 2010
PMV and Cardiology News
I don't have a lot of time tonight, but wanted to give you a quick update on how things are going...
Harlie is doing GREAT in school! She started seeing her Hearing Impaired (HI) Teacher between 9:30 - 11am. She gets instruction with another little girl from her class. And they have older HI kids come in to sign with them, too, which is pretty cool. And since it is just Harlie and her friend, L, it is good, concentrated instruction. Both Jennifer and Brandy have said that it is awesome to see Harlie engaged, participating, learning and having fun - all at the same time! This instruction just started on Monday and already I've noticed a big difference.
One BIG, ENORMOUS, HUGE change is that she has worn her PMV for HOURS, ALMOST ALL DAY for the past TWO days in a row!!!!!! A PMV is a one way valve, that allows air in the trach when you inhale, but doesn't allow air out the trach, forcing the air to go up through the vocal cords and out your mouth and nose. Here is a quick video that explains it. And here is a video that explains the benefits of wearing one. Pretty amazing stuff.
We have been trying to get her to tolerate a PMV for years. But, with an upper airway occlusion (her jaw blocking her airway) a PMV is not an option because air can not get out through the mouth and nose. After her first jaw reconstruction in June of 2008, we did get some PMV use out of her, but she's never been able to wear it for any substantial amount of time.
Until NOW!!!
Brandy put on her PMV at the beginning of her HI class and she wore it for HOURS straight! We couldn't even get it on her prior to then!!! And in two days, she's wearing it almost ALL DAY!!!!
Don't get me wrong. I think this is a WONDERFUL, AMAZING move forward. However, I cannot think/believe that it will be smooth sailing from here on out. If only. So, when I went to pick Harlie and Brandy up to go to Harlie's cardiology appointment on Tuesday and Harlie was wearing the PMV, I couldn't believe my eyes!!! I was speechless. I thought I was going to cry tears of joy. What an accomplishment!!! If she were to wear her PMV regularly, we could hear her voice! We could hear her laugh! We could hear her cry!!! Wouldn't that be AMAZING?!?!? But these are things I don't normally let myself think about. And the emotions of feeling all that left me spent later on that night. It wiped me out. Feeling those kinds of emotions takes a lot of energy! And I KNOW it won't be that easy. It's never that easy. But it is a start. A wonderful, wonderful start!!!
OH! And she is learning to write her name! Very cool stuff!!!
As far as her cardiology appointment - it went well. They did an echo (ultrasound of her heart) and things look the same as before (which is a good thing in that things aren't getting worse). She has some leaking where she had surgery in June of 2009. That was when they created another way for blood to leave her heart to go to her body. So where they did that, some blood is leaking. So far it is a mild leak, so we will do nothing until it becomes worse.
Her oxygen saturation levels (sats) are definitely getting better - they are in the mid-80's now, which is a great improvement. We are so happy about that!
She has been dropping her heart rate at night. The pulse ox alarms when the heart rate drops to 50 bpm or less and we have had to change that to 45 to get it to not alarm each night. That is her junctional rhythm coming into play. Her doc says that she is fine when she is up and active during the day, but at night when she sleeps, junctional rhythm happens more easily. I'm not doing a great job explaining it, but it is late and I am tired.
The most important thing to know is that when she goes into junctional rhythm, her body recovers in time and her regular, irregular heart beat comes back. So, again, we will do nothing until it becomes more of a problem. She already has the pacemaker leads connected and ready to go - but being paced has it's share of issues - so it isn't something you want to do unless you have to. For right now, she is fine and good, her doc is happy so we are happy.
To update you on Cooper and gymnastics... I had them credit our account so Harlie can use it for the next session. He is not going back anytime soon. He is just not ready. He needs a big open field where he can run. Not a gymnastics room.
Okay, there's more, but I'm done for the night. I hope you have a good one!
Thanks,
Christy
Harlie is doing GREAT in school! She started seeing her Hearing Impaired (HI) Teacher between 9:30 - 11am. She gets instruction with another little girl from her class. And they have older HI kids come in to sign with them, too, which is pretty cool. And since it is just Harlie and her friend, L, it is good, concentrated instruction. Both Jennifer and Brandy have said that it is awesome to see Harlie engaged, participating, learning and having fun - all at the same time! This instruction just started on Monday and already I've noticed a big difference.
One BIG, ENORMOUS, HUGE change is that she has worn her PMV for HOURS, ALMOST ALL DAY for the past TWO days in a row!!!!!! A PMV is a one way valve, that allows air in the trach when you inhale, but doesn't allow air out the trach, forcing the air to go up through the vocal cords and out your mouth and nose. Here is a quick video that explains it. And here is a video that explains the benefits of wearing one. Pretty amazing stuff.
We have been trying to get her to tolerate a PMV for years. But, with an upper airway occlusion (her jaw blocking her airway) a PMV is not an option because air can not get out through the mouth and nose. After her first jaw reconstruction in June of 2008, we did get some PMV use out of her, but she's never been able to wear it for any substantial amount of time.
Until NOW!!!
Brandy put on her PMV at the beginning of her HI class and she wore it for HOURS straight! We couldn't even get it on her prior to then!!! And in two days, she's wearing it almost ALL DAY!!!!
Don't get me wrong. I think this is a WONDERFUL, AMAZING move forward. However, I cannot think/believe that it will be smooth sailing from here on out. If only. So, when I went to pick Harlie and Brandy up to go to Harlie's cardiology appointment on Tuesday and Harlie was wearing the PMV, I couldn't believe my eyes!!! I was speechless. I thought I was going to cry tears of joy. What an accomplishment!!! If she were to wear her PMV regularly, we could hear her voice! We could hear her laugh! We could hear her cry!!! Wouldn't that be AMAZING?!?!? But these are things I don't normally let myself think about. And the emotions of feeling all that left me spent later on that night. It wiped me out. Feeling those kinds of emotions takes a lot of energy! And I KNOW it won't be that easy. It's never that easy. But it is a start. A wonderful, wonderful start!!!
OH! And she is learning to write her name! Very cool stuff!!!
As far as her cardiology appointment - it went well. They did an echo (ultrasound of her heart) and things look the same as before (which is a good thing in that things aren't getting worse). She has some leaking where she had surgery in June of 2009. That was when they created another way for blood to leave her heart to go to her body. So where they did that, some blood is leaking. So far it is a mild leak, so we will do nothing until it becomes worse.
Her oxygen saturation levels (sats) are definitely getting better - they are in the mid-80's now, which is a great improvement. We are so happy about that!
She has been dropping her heart rate at night. The pulse ox alarms when the heart rate drops to 50 bpm or less and we have had to change that to 45 to get it to not alarm each night. That is her junctional rhythm coming into play. Her doc says that she is fine when she is up and active during the day, but at night when she sleeps, junctional rhythm happens more easily. I'm not doing a great job explaining it, but it is late and I am tired.
The most important thing to know is that when she goes into junctional rhythm, her body recovers in time and her regular, irregular heart beat comes back. So, again, we will do nothing until it becomes more of a problem. She already has the pacemaker leads connected and ready to go - but being paced has it's share of issues - so it isn't something you want to do unless you have to. For right now, she is fine and good, her doc is happy so we are happy.
To update you on Cooper and gymnastics... I had them credit our account so Harlie can use it for the next session. He is not going back anytime soon. He is just not ready. He needs a big open field where he can run. Not a gymnastics room.
Okay, there's more, but I'm done for the night. I hope you have a good one!
Thanks,
Christy
Thursday, July 9, 2009
Quick Updates
Wow! Where has the week gone?
My Dad is doing well, considering. I feel so bad for him because he has not been able to eat anything AT ALL since early in the day on Sunday! The only thing they will let him have is ice chips. Yum! Poor guy. Hopefully soon things will start to wake up and start moving for him so he can eat again. They removed about 14 inches from his colon, so I guess you can't go rushing things around.
The biopsy results came back and the tumor was malignant. But it was just entering stage two, it was in the wall of the colon just a little, and it had not invaded any lymph nodes. So all that is good. The hospital has a cancer committee composed of all the different specialties that get involved and they will review his case and present their recommendation/options. That will happen in about two weeks I think.
Murphy has been taking swimming lessons all week (and it will continue next week). I am so happy to say that he is LOVING it! When we went to the pool on July 3rd he did not want to get in the big pool. And when he did, he only hung out on the steps. But, he is a completely different child now! He even told his instructor today that he wanted to jump in the deep end of the pool! I am so proud of him! I'll have pictures from our fun day on Wednesday soon.
Harlie had speech therapy on Tuesday. She put on her PMV (speaking valve) and wore it for about 6-9 minutes or so. Her therapist ended up being the one to take it off because Harlie was breathing very hard while wearing it. The struggle to get her to tolerate the PMV is growing tiresome. Sometimes I can feel myself wearing down on some of the battles. I have to redirect our efforts and change things up a little. Right now we're focusing on potty training.
We had another follow up appointment from her heart surgery. This time it was with her local cardiologist here in Richmond. They did another Echo (ultrasound of her heart). For the most part, things looked good. The only glitch is that he saw some leakage/regurgitation that he has not seen before. Basically, as her heart pumps the blood out to her body, some of the blood comes back in. He said a little bit is okay. So, we will go back for another Echo in a month. Hopefully this will not become a problem. We didn't talk about what it means if it gets worse. He didn't seem overly worried, so I'm not - yet.
Well, that's it for tonight.
~Christy
My Dad is doing well, considering. I feel so bad for him because he has not been able to eat anything AT ALL since early in the day on Sunday! The only thing they will let him have is ice chips. Yum! Poor guy. Hopefully soon things will start to wake up and start moving for him so he can eat again. They removed about 14 inches from his colon, so I guess you can't go rushing things around.
The biopsy results came back and the tumor was malignant. But it was just entering stage two, it was in the wall of the colon just a little, and it had not invaded any lymph nodes. So all that is good. The hospital has a cancer committee composed of all the different specialties that get involved and they will review his case and present their recommendation/options. That will happen in about two weeks I think.
Murphy has been taking swimming lessons all week (and it will continue next week). I am so happy to say that he is LOVING it! When we went to the pool on July 3rd he did not want to get in the big pool. And when he did, he only hung out on the steps. But, he is a completely different child now! He even told his instructor today that he wanted to jump in the deep end of the pool! I am so proud of him! I'll have pictures from our fun day on Wednesday soon.
Harlie had speech therapy on Tuesday. She put on her PMV (speaking valve) and wore it for about 6-9 minutes or so. Her therapist ended up being the one to take it off because Harlie was breathing very hard while wearing it. The struggle to get her to tolerate the PMV is growing tiresome. Sometimes I can feel myself wearing down on some of the battles. I have to redirect our efforts and change things up a little. Right now we're focusing on potty training.
We had another follow up appointment from her heart surgery. This time it was with her local cardiologist here in Richmond. They did another Echo (ultrasound of her heart). For the most part, things looked good. The only glitch is that he saw some leakage/regurgitation that he has not seen before. Basically, as her heart pumps the blood out to her body, some of the blood comes back in. He said a little bit is okay. So, we will go back for another Echo in a month. Hopefully this will not become a problem. We didn't talk about what it means if it gets worse. He didn't seem overly worried, so I'm not - yet.
Well, that's it for tonight.
~Christy
Saturday, May 16, 2009
Speaking Valve breakthrough!
So, for another big jump forward - Harlie decided that she would cooperate a little with wearing her PMV (speaking valve). It is a little piece of plastic that goes on her trach - it allows air in but doesn't allow air out. So, she breathes in through her trach, but is forced to breathe out through her mouth and nose. The whole point is to allow her to make sound so she can learn to talk. Plus it helps to strengthen swallowing.
Anyway, since it is a totally different way of breathing, it probably feels weird to her and for the most part she doesn't like it. Of course, it could be that she just can't exhale enough - which would be hugely uncomfortable. Before, she wouldn't even let me put it on her. And sometimes the pressure of her trying to exhale would blow it off and it would go flying across the room. And she would gag and cough. None of this pleasant for anyone. Her ENT said that if she could tolerate it (meaning if her jaw was fixed and enough air could pass freely) then she wouldn't mind wearing it and decannulation would be in our near future (which isn't the case).
So, we try it, abandon it, try it again, etc. Sometimes I just don't feel like being disappointed, so I don't try it for a while.
Well, on a whim, I took it with me to speech therapy on Tuesday. Michelle put it on and Harlie didn't flinch - she just kept right on with her activities with Michelle - for at least 30 seconds (which is a loooong time)! We were so surprised and excited!
So, later on that day, I was doing our feeding session at home. I put it on her and she kept it on - without any visible discomfort for at least five whole MINUTES!!! HUH? Talk about excited! The only negative was that she wanted to "talk" the whole time (meaning she was making sound with every exhale, kind of like humming but with your mouth open). So, it was hard to get her to stop so I could put food in and have her swallow it. But, what a wonderful problem to have! I remember that our other speech therapist told me that she needs to learn to control her vocal cords so she doesn't make sound with every exhale.
So far, the longest she's worn it straight has been EIGHT minutes!!! Whoa!!! But, then she takes it off, and puts it back in its container, and won't wear it again. I guess she can't make things easy - it might throw us off.
Well, it's time to sign off. My friend, Heather, signed us up on Wednesday for the Carytown 10k, which is tomorrow! I didn't think I'd be able to run in anything since we were supposed to be in the hospital. Now we're doing the 10k tomorrow and the Run like a Girl 8k in two weeks! Eh, it'll be good for my stress.
More later!
Thursday, January 15, 2009
Disappointing
On Tuesday we went to DC to get Harlie a new ear tube. I guess since she's getting older, she's getting put later on the OR schedule, so we didn't need to be there until 8am. So we left our house at 5:30 - not too bad.
As far as her ear goes, everything is fine - no big deal. Her ENT put a tube in and she's good to go.
BUT, during the waiting for them to take her back to the OR, I got some time with her ENT and gave him a brief summary of her upcoming heart surgery and went over what I would like to happen (heart surgery in the spring, decann sometime thereafter). He asked me a bunch of questions about her PMV (speaking valve) use and I told him what our struggles are. He watched her play a bit and then left. When he came back he told me he wanted to do another bronchoscopy, just in case a granuloma or something was blocking airflow causing our struggles with the PMV and so he would have up-to-date information so he could talk to Harlie's cardiologist about the timing of everything. So I said sure, go ahead.
Without going into a ton of detail, it appears that her bone graft jaw reconstruction was unsuccessful. While she looks better, the real goal of the surgery was to "fix" her upper airway obstruction (her tongue base) so she wouldn't need the trach to breathe or a tube to eat. We were told that her jaw could recede, but our last check up with the plastic surgeon went so great. And her surgeon had a 100% success rate (well, before Harlie, I mean). So I just really believed that it would be a success. To think otherwise was too painful and unnecessary!
So, to say that we're disappointed is an understatement. When her ENT showed me the pictures from the scope - there's no denying it. I was shocked. He said that she needs either time for her jaw to grow, or more surgical intervention. Both requiring more time than I really want to think about. At the rate she grows, who knows when it would grow out. And she had that surgery in JUNE, with possible decanning a year later! So, clearly she will have the trach for much longer than anticipated. Which really isn't shocking in the world of trachs. That's why us trach moms don't daydream too much about life without the trach. And even though I said I knew it was no guarantee - being honest, I didn't really think that applied to us. I guess I won't make that mistake again, huh?
This also explains why she didn't want to wear her PMV as much as we wanted her to. The problem is that she can inhale just fine, but she can't fully exhale. So her ENT drilled a small hole in a PMV and gave it to me to try. We've been trying the new one and while she still takes it off (and hides it) she definitely tolerates it better and has already worn it for a much longer period of time.
So the next day I called her plastic surgeon's office and made an appointment for February. Now we need to figure out what can be done, if anything, and if so, when we can do it. And now my happy little dream of what this new year was going to bring us is...well, not going to come true. To think just 11 days ago I thought she would only have 1 surgery this year. Now we're looking at heart, spine and possibly craniofacial (which there's NO way she can have all of them done in one year).
While this might seem like a depressing post - I want to end on a positive note (it's what gets me through this crazy journey). While I dreamt of a naked neck and a nose breather, she can communicate. And her trach care has gotten "easier" in the sense that I feel more seasoned and comfortable with all her care. And I have great nurses that I love and that love Harlie. And hopefully, with the use of the PMV and future communication devices, she won't be held back developmentally because of the trach. So, this isn't the end of the world. Instead of dreaming of a naked neck, I'll dream of a major growth spurt that kicks her tongue base out of her airway! Which, actually, now that I think about it, is kinda the same thing. Oh well. Whatever works.
Take care,
Christy
As far as her ear goes, everything is fine - no big deal. Her ENT put a tube in and she's good to go.
BUT, during the waiting for them to take her back to the OR, I got some time with her ENT and gave him a brief summary of her upcoming heart surgery and went over what I would like to happen (heart surgery in the spring, decann sometime thereafter). He asked me a bunch of questions about her PMV (speaking valve) use and I told him what our struggles are. He watched her play a bit and then left. When he came back he told me he wanted to do another bronchoscopy, just in case a granuloma or something was blocking airflow causing our struggles with the PMV and so he would have up-to-date information so he could talk to Harlie's cardiologist about the timing of everything. So I said sure, go ahead.
Without going into a ton of detail, it appears that her bone graft jaw reconstruction was unsuccessful. While she looks better, the real goal of the surgery was to "fix" her upper airway obstruction (her tongue base) so she wouldn't need the trach to breathe or a tube to eat. We were told that her jaw could recede, but our last check up with the plastic surgeon went so great. And her surgeon had a 100% success rate (well, before Harlie, I mean). So I just really believed that it would be a success. To think otherwise was too painful and unnecessary!
So, to say that we're disappointed is an understatement. When her ENT showed me the pictures from the scope - there's no denying it. I was shocked. He said that she needs either time for her jaw to grow, or more surgical intervention. Both requiring more time than I really want to think about. At the rate she grows, who knows when it would grow out. And she had that surgery in JUNE, with possible decanning a year later! So, clearly she will have the trach for much longer than anticipated. Which really isn't shocking in the world of trachs. That's why us trach moms don't daydream too much about life without the trach. And even though I said I knew it was no guarantee - being honest, I didn't really think that applied to us. I guess I won't make that mistake again, huh?
This also explains why she didn't want to wear her PMV as much as we wanted her to. The problem is that she can inhale just fine, but she can't fully exhale. So her ENT drilled a small hole in a PMV and gave it to me to try. We've been trying the new one and while she still takes it off (and hides it) she definitely tolerates it better and has already worn it for a much longer period of time.
So the next day I called her plastic surgeon's office and made an appointment for February. Now we need to figure out what can be done, if anything, and if so, when we can do it. And now my happy little dream of what this new year was going to bring us is...well, not going to come true. To think just 11 days ago I thought she would only have 1 surgery this year. Now we're looking at heart, spine and possibly craniofacial (which there's NO way she can have all of them done in one year).
While this might seem like a depressing post - I want to end on a positive note (it's what gets me through this crazy journey). While I dreamt of a naked neck and a nose breather, she can communicate. And her trach care has gotten "easier" in the sense that I feel more seasoned and comfortable with all her care. And I have great nurses that I love and that love Harlie. And hopefully, with the use of the PMV and future communication devices, she won't be held back developmentally because of the trach. So, this isn't the end of the world. Instead of dreaming of a naked neck, I'll dream of a major growth spurt that kicks her tongue base out of her airway! Which, actually, now that I think about it, is kinda the same thing. Oh well. Whatever works.
Take care,
Christy
Monday, January 12, 2009
Harlie "said" her first word!
On Thursday Harlie's speech therapist (Beth) started working on getting her to verbalize some vowels. We are hoping that Harlie realizing she can make sounds/talk, that it will make her want to wear her PMV (speaking valve). Here are a couple of videos of Harlie "saying" her first words!!! I know we have a long way to go but it's so exciting!
I hope you enjoy them as much as I do! OH! And when Harlie said "eye" the first time, I said "I want to get this on video" so I jumped up and ran to get the camera. When I got back and sat down, Beth was already working on getting her to say "oh" for open (like in the second video). BUT, Harlie stopped and looked directly at me (without me saying a word) and said "eye" again. I swear she knew what I said and understood it! And Beth completely agreed. That girl is something!
Well we have to be on the road by 5:15am to go up to DC for her ear tube. Talk to you later!
Take care,
Christy
Saturday, January 10, 2009
Stubborn Harlie
Here is a little video of us trying to get Harlie to put her "voice" on (her PMV, which is a speaking valve - it's that little purple thing hanging from her trach). I am very happy to say that things are getting much better. AND I have an exciting video to post! So, check back soon. I have a lot to write about so I will try to post a few things this weekend.
Monday, November 24, 2008
Funny Harlie
We had a very busy day today. We had to go and get Harlie measured for her new ankle/foot braces (she's outgrown her current ones). Then we had to rush back home for her physical therapy appointment (which went great). And as soon as that one was over, we had speech therapy (which also went great). Right when speech therapy begins I have to go and pick up Murphy from preschool, and when he gets home its crazy. Especially when Beth is trying to concentrate on Harlie's therapy.
Well, back to Harlie's great speech therapy session. She kept her PMV (speaking valve, which we call her "voice") on the entire time - that's an hour, folks (a long time for her). It helps her swallowing and breathing function, which is why it is so important for her to wear it as often as possible. She tolerates it just fine - physically. She just for some reason, likes to take it off. Her hands are closer and quicker than mine, and it is impossible to keep her from removing it. But, she knows that Beth expects her to wear it for feeding, so she does. Which tells us that we need to expect her to wear it all the time and let her know that. At the end of the session, Harlie waved bye-bye to Beth and blew her a kiss. Then she took off the PMV and signed that she wanted down from her chair. So, we said she couldn't get down unless she put her voice on. She grimaced, and it took a few times going back and forth for her to realize that we were serious. So, she put her voice on, we let her down and she went on in the living room to play.
Somehow she ended up in a chair in the living room and took her voice off. Again, we wouldn't let her down unless she put her voice on - and kept it on. So, I asked her if she wanted down. She nodded yes, and then I told her to put her voice on. She would, and I let her down. As soon as her feet hit the floor, she would take it off. Then I would put her back up on the chair. She'd cry a bit and the whole scenario repeated - about 15 times! At one point I grew tired of the whole ordeal. So, when she got down off the chair and took her voice off, I just looked at her. And she turned around and climbed back up on the chair totally on her own!!! It was hilarious!
She finally gave up and left her voice on so she could play. I guess it pays to be consistent. But oh boy it takes A LOT of energy!
Well, that's all I have time for tonight. Talk to you later!
Well, back to Harlie's great speech therapy session. She kept her PMV (speaking valve, which we call her "voice") on the entire time - that's an hour, folks (a long time for her). It helps her swallowing and breathing function, which is why it is so important for her to wear it as often as possible. She tolerates it just fine - physically. She just for some reason, likes to take it off. Her hands are closer and quicker than mine, and it is impossible to keep her from removing it. But, she knows that Beth expects her to wear it for feeding, so she does. Which tells us that we need to expect her to wear it all the time and let her know that. At the end of the session, Harlie waved bye-bye to Beth and blew her a kiss. Then she took off the PMV and signed that she wanted down from her chair. So, we said she couldn't get down unless she put her voice on. She grimaced, and it took a few times going back and forth for her to realize that we were serious. So, she put her voice on, we let her down and she went on in the living room to play.
Somehow she ended up in a chair in the living room and took her voice off. Again, we wouldn't let her down unless she put her voice on - and kept it on. So, I asked her if she wanted down. She nodded yes, and then I told her to put her voice on. She would, and I let her down. As soon as her feet hit the floor, she would take it off. Then I would put her back up on the chair. She'd cry a bit and the whole scenario repeated - about 15 times! At one point I grew tired of the whole ordeal. So, when she got down off the chair and took her voice off, I just looked at her. And she turned around and climbed back up on the chair totally on her own!!! It was hilarious!
She finally gave up and left her voice on so she could play. I guess it pays to be consistent. But oh boy it takes A LOT of energy!
Well, that's all I have time for tonight. Talk to you later!
Thursday, September 18, 2008
Harlie is now a WALKER!!
Well, I can officially say that Harlie is walking. Every day she walks more and more. Another huge milestone achieved. And right before her 2nd birthday! I can't tell you how thrilled we are. And what a difference a little confidence has done for her! She is playing like a typical toddler and it is wonderful to watch! We don't even bring the walker in the house anymore. Although I still use it for distances, as she can only do short ones now. But, I know that will change quickly!
Here is a video (shocker) of her walking at the mall this past weekend. Another thing she's learned is how to give a kiss (something the jaw surgery has helped). I know it is hard to hear (the water fountain is right behind me so the camera picked up the sound), but Tom asked her to give him a kiss. She is just the sweetest thing ever!
Oh, and the other day she wanted her sunglasses, but they were just out of her reach. So, she made up her own sign! I couldn't believe it. She pointed at the sunglasses and then tapped her fingers to her temples. That's not the sign, but it is close enough and it really doesn't matter as long as I know what she's saying anyway. And I clearly understood her. She just amazes me!
Today we had feeding therapy with Beth. Harlie did great! Beth said that she swallowed a couple of times. But most important is how she's letting us do more and more and how she's biting down on her chew "toys" and moving her tongue all around. So, now I can see that what felt like not making progress, is actually, well... making progress. What a difference that makes to my spirit and my new enthusiasm for working with her feeding!
I can't believe how great everything is going. Oh! And she has been wearing her PMV (speaking valve) a lot the last few days. In fact, she wore it practically the whole time during her feeding session today (1 hour). And there is a little plastic hook that wraps around the trach so if she takes off the PMV it hangs there instead of falling on the floor. So, I put that on and for a couple of hours she kept on putting it on herself and clapping. Clearly, we're big clappers in this house - you know, all that positive reinforcement stuff. Anyway, I was trying to get her to make sounds (other than the sound you've heard before) and she actually said "mama!" Now, she wasn't looking at me, or calling me and I don't think she realized that she even said it. But, the fact that she did is all that matters. And I'm not exaggerating or making that up. My Mom and Dad were there and they heard her, too.
Beth said that she will start to learn the same way a baby learns they can make sound. So, it will be a learning process, but one that we are REALLY looking forward to. And I think I can relax a little. I think she's made it perfectly clear that she will accomplish her goals when she's good and ready and somehow it seems to all work out. And that she can do that in one instant. Meaning that one day she wouldn't walk if her life depended on it, and the next day, she took off.
I will have to get Tom to take a new photo of my belly. It is very big and I think I can officially say that I am ready to have this baby! Well, that's it for now.
Take care,
Christy
Monday, September 15, 2008
Hearing Harlie
We had physical and speech therapies today. Both went great! Traci (her PT) is working on challenging her more with her walking and she did great. And in speech therapy, Beth worked with her PMV (speaking valve). Here's a little clip of her. WAY more sound and less whining!!! You can even hear her laugh a little. Music to my ears!!! Warning: you might grow tired of the videos.
Saturday, September 13, 2008
Harlie whining
So, we've been trying the PMV (speaking valve) a lot. But, she's definitely not liking the feeling I guess. She's never breathed through her mouth and nose, so I guess the sensation is very weird and I'm sure it takes more effort on her part, so she's not a happy camper when I make her wear it. I'm hoping that once we get her over a "hump" she'll be fine with it.
My speech therapist suggested that we try it while she's watching TV so she'll be distracted. So, here's her whining:
My speech therapist suggested that we try it while she's watching TV so she'll be distracted. So, here's her whining:
That's it for now. Hopefully I'll have more, better ones, later!
Take care,
Christy
Wednesday, September 10, 2008
Bronch Results
Where to start...
First, I must say that the trip to DC overall was great. Traffic was moving both on the way there and on the way home, so that wasn't much of an issue (always a great thing).
You know, I wish I knew how many procedures Harlie's had at a hospital that have required anesthesia (in her life). I suppose I could try to go back through my calendars and see if I could find them all. Despite her knowing very well where we are and what's going to happen, she just doesn't seem bothered at all. The nurse doing all the pre-op stuff to her looked right at Harlie and said, "I can tell you have been through this too many times, you are way too good." The whole time all the other babies are crying and Harlie is just playing with us and letting the nurse do whatever she needed to do. Don't get me wrong, I suppose I am glad. If we have to spend this much time there, it is certainly easier on me that she's good and happy. Although handing her over to the team when it's OR time is NEVER easy. She does not let strangers hold her and it is agony to pry her little fingers and hands from my arms. How many times are we going to have to do this??
Oh, I have to say that there was a resident there that came in to ask me if I had any questions. HA! I should have asked him if he had any questions!! Just to give him something to think about, I asked him how long the procedure would take. He went on and on giving me some BS answer that simply made no sense at all. I should have told him that it is okay to say "I don't know." As a veteran of the OR, I saw through his BS answer, and, quite frankly, was insulted. I just smiled politely and hoped he would leave my sight as soon as possible. I looked at Brandy and she just started laughing, knowing very well what I was thinking. I really think I've hit my breaking point with residents. The next time I get someone like that, I'm going to help educate them on talking to moms like myself - politely, of course.
So, Harlie had a bronchoscopy. The goal was to see if the jaw surgery actually got her jaw out of her airway and to make sure there were no other airway issues (scar tissue, granulomas, etc.). The good news is that her airway looked great and he said that the jaw was completely clear from her airway. Definitely improved from before, of course. Keep in mind that this doc is the one that performed her emergency intubation right after her birth. He said that at that time regular intubation was impossible due to the severity of her underdeveloped jaw. And he did her bronch last year, so he knows her intimately.
The bad news is that he could not use a rigid bronchoscope, even though he was able to use one last year. This was puzzling because if anything, given the jaw surgery and her growth in one year, it should have been easier, not impossible. He said that he believes it was because of her cervical spine abnormalities. She has some vertebrae that are fused together making mobility impossible. So, basically she has a lot less range of motion (looking up especially). Great. Just when I think one of her abnormalities is "no big deal" and completely livable without being obvious or a pain in our butts, it rears it's ugly head. UGH! I guess he couldn't tilt her head back enough to get the bronch in the right angle. I don't really know what this means for her. I'm choosing to put it in the back of my mind for now.
He also looked in her good ear. I am SO happy he did that! Back when she got her wires removed, she also had an ABR test on her hearing. They said she had mild hearing loss in her good ear (which did not make me happy, of course, since she only has one). Well, he said that her ear tube had come out of her ear drum and was in the canal, and a granuloma was growing around it and it was blocking the canal! So, he removed the granuloma and the tube and cleaned it all out. YAY! That would certainly explain her loss of hearing! I noticed lately that she would play with a very loud toy right up to her ear and not even be phased by it. So, hopefully this means that her hearing is great.
So, since her airway looked good, he did downsize her trach (which allows more air to pass by the vocal cords). So, after she recovered for a few hours a speech therapist came to see her and test the PMV. The BIG moment! She brought a pressure gauge and put the PMV on and her pressures were great! And she maintained her normal sats (oxygen levels) and kept the PMV on for... get this... 10 WHOLE MINUTES!!! I was SO pleased!!! The ST said that she was good to go. Of course, during the 10 minutes, she didn't make one itty bitty little sound. We tried everything, and she just sat there with her mouth hanging open looking at us like we had lost our minds. Then she pulled it off and put it back in the container.
Of course, I've tried putting it back on countless times, and she takes it off immediately. So, I have gotten to hear some squeaks, but that's it. We see our speech therapist tomorrow, so we'll see what she thinks. Maybe she'll have some ideas as far as getting her to wear it.
Well, that's it. Thanks for reading!
Take care,
Christy
First, I must say that the trip to DC overall was great. Traffic was moving both on the way there and on the way home, so that wasn't much of an issue (always a great thing).
You know, I wish I knew how many procedures Harlie's had at a hospital that have required anesthesia (in her life). I suppose I could try to go back through my calendars and see if I could find them all. Despite her knowing very well where we are and what's going to happen, she just doesn't seem bothered at all. The nurse doing all the pre-op stuff to her looked right at Harlie and said, "I can tell you have been through this too many times, you are way too good." The whole time all the other babies are crying and Harlie is just playing with us and letting the nurse do whatever she needed to do. Don't get me wrong, I suppose I am glad. If we have to spend this much time there, it is certainly easier on me that she's good and happy. Although handing her over to the team when it's OR time is NEVER easy. She does not let strangers hold her and it is agony to pry her little fingers and hands from my arms. How many times are we going to have to do this??
Oh, I have to say that there was a resident there that came in to ask me if I had any questions. HA! I should have asked him if he had any questions!! Just to give him something to think about, I asked him how long the procedure would take. He went on and on giving me some BS answer that simply made no sense at all. I should have told him that it is okay to say "I don't know." As a veteran of the OR, I saw through his BS answer, and, quite frankly, was insulted. I just smiled politely and hoped he would leave my sight as soon as possible. I looked at Brandy and she just started laughing, knowing very well what I was thinking. I really think I've hit my breaking point with residents. The next time I get someone like that, I'm going to help educate them on talking to moms like myself - politely, of course.
So, Harlie had a bronchoscopy. The goal was to see if the jaw surgery actually got her jaw out of her airway and to make sure there were no other airway issues (scar tissue, granulomas, etc.). The good news is that her airway looked great and he said that the jaw was completely clear from her airway. Definitely improved from before, of course. Keep in mind that this doc is the one that performed her emergency intubation right after her birth. He said that at that time regular intubation was impossible due to the severity of her underdeveloped jaw. And he did her bronch last year, so he knows her intimately.
The bad news is that he could not use a rigid bronchoscope, even though he was able to use one last year. This was puzzling because if anything, given the jaw surgery and her growth in one year, it should have been easier, not impossible. He said that he believes it was because of her cervical spine abnormalities. She has some vertebrae that are fused together making mobility impossible. So, basically she has a lot less range of motion (looking up especially). Great. Just when I think one of her abnormalities is "no big deal" and completely livable without being obvious or a pain in our butts, it rears it's ugly head. UGH! I guess he couldn't tilt her head back enough to get the bronch in the right angle. I don't really know what this means for her. I'm choosing to put it in the back of my mind for now.
He also looked in her good ear. I am SO happy he did that! Back when she got her wires removed, she also had an ABR test on her hearing. They said she had mild hearing loss in her good ear (which did not make me happy, of course, since she only has one). Well, he said that her ear tube had come out of her ear drum and was in the canal, and a granuloma was growing around it and it was blocking the canal! So, he removed the granuloma and the tube and cleaned it all out. YAY! That would certainly explain her loss of hearing! I noticed lately that she would play with a very loud toy right up to her ear and not even be phased by it. So, hopefully this means that her hearing is great.
So, since her airway looked good, he did downsize her trach (which allows more air to pass by the vocal cords). So, after she recovered for a few hours a speech therapist came to see her and test the PMV. The BIG moment! She brought a pressure gauge and put the PMV on and her pressures were great! And she maintained her normal sats (oxygen levels) and kept the PMV on for... get this... 10 WHOLE MINUTES!!! I was SO pleased!!! The ST said that she was good to go. Of course, during the 10 minutes, she didn't make one itty bitty little sound. We tried everything, and she just sat there with her mouth hanging open looking at us like we had lost our minds. Then she pulled it off and put it back in the container.
Of course, I've tried putting it back on countless times, and she takes it off immediately. So, I have gotten to hear some squeaks, but that's it. We see our speech therapist tomorrow, so we'll see what she thinks. Maybe she'll have some ideas as far as getting her to wear it.
Well, that's it. Thanks for reading!
Take care,
Christy
Friday, September 5, 2008
ENT Results
Well, nothing happened today. Harlie's ENT doc didn't feel comfortable making any changes to her trach without doing a bronch first. I was afraid of that. The last bronch she had was last August when she had her lobectomies. That bronch was good in that her airway looked good with no scarring, granulomas or any evidence of aggressive suctioning. The bronch is done under anesthesia, so it requires another day trip up to DC. With my due date approaching fast (just 3 weeks away now!) he was able to get us in on Tuesday.
I definitely feel like we are flirting with disaster. The last thing I wanted to do was to be out of town (2 hours away if good traffic) for an entire day at 37 weeks pregnant. Granted, I will be right across the street from where I had Harlie, so it's not like we don't know the area. But still...
As much as I didn't want this bronch to have to happen, we simply have no choice. I am determined to get a PMV (speaking valve) on Harlie! I don't care what I have to do. It is so important to the function of her airway and swallowing, not to mention that hopefully it will get her understanding that she can make sound so we can make some progress in the speech department. Although I know that it won't be as simple as just putting the valve on and teaching her how to talk. I have a feeling we will struggle with her to keep the valve on. Since she will not wear an HME, it really wouldn't surprise me if she takes the PMV off, too. But, I am hoping that once she figures out she can hear herself, that will help motivate her to wear it. Clearly, we will have to cross that bridge later.
Unfortunately, this makes Harlie's 5th procedure under anesthesia in just 4 months!!! Add Murphy's surgery in and quite frankly, I am TIRED of hospitals!!!! Throw in all the pre-op AND follow-up appointments, not to mention the home therapies and it just gets overwhelming.
Monday should be fun. Harlie has to get a pre-op physical by her pediatrician (for the bronch on Tuesday) at 8:50am, then Murphy has a dentist appointment at 10:30, then Harlie has physical therapy at 11:30 and then speech therapy at 12:30. Ahhh, sounds relaxing, doesn't it?
Well, tomorrow the baby's furniture gets painted! Thankfully, our friends Susan and Paul are helping us out. Paul is a cabinet builder and has the necessary equipment so him and Tom are going to be working on it tomorrow. Hopefully Tom will be able to bring it all home on Sunday. I am so excited!
Well, that's it for tonight.
Take care,
Christy
I definitely feel like we are flirting with disaster. The last thing I wanted to do was to be out of town (2 hours away if good traffic) for an entire day at 37 weeks pregnant. Granted, I will be right across the street from where I had Harlie, so it's not like we don't know the area. But still...
As much as I didn't want this bronch to have to happen, we simply have no choice. I am determined to get a PMV (speaking valve) on Harlie! I don't care what I have to do. It is so important to the function of her airway and swallowing, not to mention that hopefully it will get her understanding that she can make sound so we can make some progress in the speech department. Although I know that it won't be as simple as just putting the valve on and teaching her how to talk. I have a feeling we will struggle with her to keep the valve on. Since she will not wear an HME, it really wouldn't surprise me if she takes the PMV off, too. But, I am hoping that once she figures out she can hear herself, that will help motivate her to wear it. Clearly, we will have to cross that bridge later.
Unfortunately, this makes Harlie's 5th procedure under anesthesia in just 4 months!!! Add Murphy's surgery in and quite frankly, I am TIRED of hospitals!!!! Throw in all the pre-op AND follow-up appointments, not to mention the home therapies and it just gets overwhelming.
Monday should be fun. Harlie has to get a pre-op physical by her pediatrician (for the bronch on Tuesday) at 8:50am, then Murphy has a dentist appointment at 10:30, then Harlie has physical therapy at 11:30 and then speech therapy at 12:30. Ahhh, sounds relaxing, doesn't it?
Well, tomorrow the baby's furniture gets painted! Thankfully, our friends Susan and Paul are helping us out. Paul is a cabinet builder and has the necessary equipment so him and Tom are going to be working on it tomorrow. Hopefully Tom will be able to bring it all home on Sunday. I am so excited!
Well, that's it for tonight.
Take care,
Christy
ENT Appointment
So, we're off to DC for Harlie's ENT appointment. I was kind of hoping that he would downsize her trach, which would hopefully allow more of an air leak, which would hopefully mean that she could successfully wear a PMV (speaking valve). But, I really don't know what to expect, so I'm trying to keep my hopes in check.
He might be nervous to put a smaller trach in when we aren't sure if her jaw reconstruction was successful. Over time, her jaw could continue to recede, making the smaller trach size not such a good idea. So, we'll just have to see.
I'll update on how it went later on tonight (if it's not too late). Have a good day and wish us luck!
Take care,
Christy
He might be nervous to put a smaller trach in when we aren't sure if her jaw reconstruction was successful. Over time, her jaw could continue to recede, making the smaller trach size not such a good idea. So, we'll just have to see.
I'll update on how it went later on tonight (if it's not too late). Have a good day and wish us luck!
Take care,
Christy
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