Yes, I've been a bad blogger again. Sorry! I don't know where the time goes!
Just some quick updates since it is already so late...
Harlie is doing pretty well drinking from a sippy cup. But, if it isn't one thing, it's another. And while she is pretty cooperative and willing to drink - it seems her belly is having a hard time. Today she drank 5 ounces without a problem. Then she threw up 4 ounces. I'm sure that's hard to visualize. But, trust me when I say that 4 ounces is A LOT to throw up. I think it is the most I have ever seen from her. Ever. And that is saying a lot considering I've seen her vomit an insane amount of times. Multiple times per day for years adds up quick.
Anyway, I simply cannot describe how frustrating and disappointing it is to sit there and work so hard to get that food in, just to have it all be for nothing. And there is nothing I can do about it. If only the GI docs could figure out what's wrong...
Now, I'm no doc, but I can tell you that it is clearly a volume issue. Her belly just can't handle the volume in a short amount of time. Her feeding sessions are 30 minutes long. Plenty of time for a normal kid to eat a meal/drink a bottle. Heck, Cooper would scarf down an 8 ounce bottle in just a few minutes. I don't think Harlie has EVER had a feeding that large.
We've been working on trying to get her to tolerate a larger feeding or a quicker feeding rate for her whole life. Three and a half years and we are STILL struggling with volume issues! And now that she can drink by mouth, her belly isn't going to cooperate. Seriously?
Anyway, Harlie is in a big girl bed now! She is loving it! I think she is so much more comfortable. It has to feel better for her back than the hard crib mattress she was STILL sleeping on!!!! Ugh. Anyway, I will post pictures soon. It is still a work in progress as Tom still has to make the headboard. I think it is going to be so cute!
And Tom's little sister, Amanda, was in a car accident yesterday (Sunday). She broke her back (L1, I think) and is in the hospital in PA. We are all very thankful that she's okay. She got her brace today and will wear it (depending on how she heals) for four to six MONTHS! So far it has been a bit of a struggle finding the right pain meds for her. But hopefully this third one will do the trick so she can get some rest tonight and some relief tomorrow. Her recovery is not going to be easy. So, please send her some good, healing thoughts.
Well, I hope you all had a nice Easter. The Easter Bunny was very thoughtful (and smart) and brought Harlie her very own helmet. I guess word travels fast. I think she might have to wear it all the time, though. Today she was stepping down from a very high curb (something she normally would never do without help - I guess she was feeling brave and confident) and almost did a face plant. I stopped to watch her go down, but was not close enough to grab her. Luckily, Jennifer was there, and with her hands full, she still managed to catch the back of Harlie's shirt to stop her from hitting the pavement. It was a close one! And a very impressive save. Thanks Jennifer!
Oh, and another thing... Harlie had a hearing appointment today. She was tested again to see if she could hear any of those low frequency sounds. But, her breathing was so loud today, she said she didn't know if Harlie could hear it anyway. So, we'll just keep trying and maybe one day we'll catch her when her breathing isn't so loud and maybe then we'll get a really good idea of how low she can hear.
We did get another mold made of her ear, though. We have been having a heck of a time keeping her aid in place. It just won't stay secure in her ear canal. Her ear canal is just so darn tiny! So, hopefully they'll be able to get this next one to fit better.
Okay, NOW I'm done.
Take care!
~Christy
Showing posts with label sippy cup. Show all posts
Showing posts with label sippy cup. Show all posts
Monday, April 5, 2010
Tuesday, March 30, 2010
Weekend Update
To recap this past weekend...
Saturday was the Ukrop's 10k (6.2 miles). It was my first time to be in a seeded wave (you had to have proof - a past running time - to show that you could run that particular pace) which I thought was pretty cool. My wave was the one that would complete the race in 53-54 minutes. My personal goal was to complete it in 52-54 minutes.
Unfortunately, it turned out to be one of my worst runs - ever. Before I reached the first mile marker I knew I would not make my goal. I ended up finishing it in 56:00 minutes. I was pretty darn disappointed. Not necessarily in myself - I know I can do better than that - and have in training (like just the weekend before). And every runner has bad runs. I was just disappointed that my worst run had to be in a race. And I was feeling pretty crummy about it for a while. Until I realized that I have had much bigger disappointments - about things that are WAY more important than one lousy run. That's nothing on the scale of life. Especially my life! And on that same token (thanks Mel for helping me put it in perspective) I have had WAY bigger achievements. And just getting out there running when I can (which is not consistent unfortunately) is an achievement in itself.
Oh, and I have to thank my friend Alisha. After I finished my run, we found my brother, Bruce, and his son, Charlie, and went to cheer on my sister-in-law, Nancy and their girls, Maggie and Kelly. As we were standing behind the gates near the finish line scanning the runners for them, I saw Alisha. I yelled her name cheering for her and when she saw me she - stopped running, came over to where I was standing and jumped to lean over the gate to give me a kiss - then went back to finish her run!
Now that's the fun spirit you need when running. It's so easy to get caught up in trying to beat your best time. But sometimes it's good to remember to just have fun. She didn't care about her time. And she was laughing and having a great time. And that was exactly what I needed at that time. Funny how that happens. So, thanks Alisha!
And Tom ran the Kids Mile with Murphy. It was his first time doing it. Tom did a great job of getting him excited and making it something fun. Here they are right before the start.
And this is us after my finish.
After the race we had my parents and my brother's family over for lunch. I forgot to mention that my brother thinks he's funny. One of the first things he said to me when we saw each other at the race was something like - why don't you just tie Harlie up to the bumper next time? And back at my house, my Mom was pushing Harlie on the swing and Bruce yelled out, Hey Mom, just tie a rope to the swing and stand back here. He also told me, you shouldn't have skipped science class or something like that. Funny, huh? Yeah, I don't think I'll be living that one down for a while. Not one of my shining moments...
Feeding Update
Then for Harlie's "dinner" (still on Saturday) I thought I would try to get her to drink some. Prior to this moment, her sippy cup drinking had been spotty at best. All conditions have to be "right" in order to have a good feeding session. So, I put 4 ounces in the cup (5 ounces is a full feeding - but she's never come close to drinking all of that). Well, it was as if she knew I needed to be happy. She FINISHED all 4 ounces!!!! It was a wonderful session. She didn't complain or put up a fuss at all. It went beautifully!!! I wanted to put another ounce in there so I wouldn't have to hook up her tube feeding - but once we said "all done" there was no going back. So, I decided to wait a while and I would try again later. Well, about an hour later she drank the 5th ounce!!! So no tube feeding for that meal!!! WOOHOO!!!
On Sunday, I couldn't wait to try again. So, first thing that morning when Harlie got up and downstairs - we headed for the high chair. And holy moly - she drank the entire 5 ounces!!! Another tube feeding not necessary!!! Of course she threw up an ounce - but, hey, that's not so bad. Lunch was the same - all cooperation - no tube feeding! But dinner didn't go so great so I had to tube feed that one. Still - a great day!
And Monday and Tuesday went great with her drinking two out of three meals each day. All in all - she is doing FABULOUS with drinking from a sippy cup!
On Monday, Brandy was off, so I got to take Harlie to preschool. That was a fun experience. But I will have to save that one for tomorrow. It has gotten late!
Thanks!
~Christy
Saturday was the Ukrop's 10k (6.2 miles). It was my first time to be in a seeded wave (you had to have proof - a past running time - to show that you could run that particular pace) which I thought was pretty cool. My wave was the one that would complete the race in 53-54 minutes. My personal goal was to complete it in 52-54 minutes.
Unfortunately, it turned out to be one of my worst runs - ever. Before I reached the first mile marker I knew I would not make my goal. I ended up finishing it in 56:00 minutes. I was pretty darn disappointed. Not necessarily in myself - I know I can do better than that - and have in training (like just the weekend before). And every runner has bad runs. I was just disappointed that my worst run had to be in a race. And I was feeling pretty crummy about it for a while. Until I realized that I have had much bigger disappointments - about things that are WAY more important than one lousy run. That's nothing on the scale of life. Especially my life! And on that same token (thanks Mel for helping me put it in perspective) I have had WAY bigger achievements. And just getting out there running when I can (which is not consistent unfortunately) is an achievement in itself.
Oh, and I have to thank my friend Alisha. After I finished my run, we found my brother, Bruce, and his son, Charlie, and went to cheer on my sister-in-law, Nancy and their girls, Maggie and Kelly. As we were standing behind the gates near the finish line scanning the runners for them, I saw Alisha. I yelled her name cheering for her and when she saw me she - stopped running, came over to where I was standing and jumped to lean over the gate to give me a kiss - then went back to finish her run!
Now that's the fun spirit you need when running. It's so easy to get caught up in trying to beat your best time. But sometimes it's good to remember to just have fun. She didn't care about her time. And she was laughing and having a great time. And that was exactly what I needed at that time. Funny how that happens. So, thanks Alisha!
And Tom ran the Kids Mile with Murphy. It was his first time doing it. Tom did a great job of getting him excited and making it something fun. Here they are right before the start.
And this is us after my finish.
After the race we had my parents and my brother's family over for lunch. I forgot to mention that my brother thinks he's funny. One of the first things he said to me when we saw each other at the race was something like - why don't you just tie Harlie up to the bumper next time? And back at my house, my Mom was pushing Harlie on the swing and Bruce yelled out, Hey Mom, just tie a rope to the swing and stand back here. He also told me, you shouldn't have skipped science class or something like that. Funny, huh? Yeah, I don't think I'll be living that one down for a while. Not one of my shining moments...
Feeding Update
Then for Harlie's "dinner" (still on Saturday) I thought I would try to get her to drink some. Prior to this moment, her sippy cup drinking had been spotty at best. All conditions have to be "right" in order to have a good feeding session. So, I put 4 ounces in the cup (5 ounces is a full feeding - but she's never come close to drinking all of that). Well, it was as if she knew I needed to be happy. She FINISHED all 4 ounces!!!! It was a wonderful session. She didn't complain or put up a fuss at all. It went beautifully!!! I wanted to put another ounce in there so I wouldn't have to hook up her tube feeding - but once we said "all done" there was no going back. So, I decided to wait a while and I would try again later. Well, about an hour later she drank the 5th ounce!!! So no tube feeding for that meal!!! WOOHOO!!!
On Sunday, I couldn't wait to try again. So, first thing that morning when Harlie got up and downstairs - we headed for the high chair. And holy moly - she drank the entire 5 ounces!!! Another tube feeding not necessary!!! Of course she threw up an ounce - but, hey, that's not so bad. Lunch was the same - all cooperation - no tube feeding! But dinner didn't go so great so I had to tube feed that one. Still - a great day!
And Monday and Tuesday went great with her drinking two out of three meals each day. All in all - she is doing FABULOUS with drinking from a sippy cup!
On Monday, Brandy was off, so I got to take Harlie to preschool. That was a fun experience. But I will have to save that one for tomorrow. It has gotten late!
Thanks!
~Christy
Thursday, March 11, 2010
Sippy Cup is a hit!
Just in case you're wondering how the sippy cup thing went over at dinner...
It went GREAT!
We only put two ounces in (not sure why) and she drank it all! I showed her on the communication device how to say "drink milk" and she would make it say "drink milk" and then she would take a sip, put it down, then say "drink milk" and then take a sip, put it down, etc.
You should have seen how proud she was of herself! It was so heartwarming. I can't imagine how it must feel to be her. She clearly is starting to realize the things that others do, that she doesn't. And I think she wants to, too. Although Tom did offer her a little taste of ice cream and she said NO for sure to that. Oh well. Baby steps. Or, as my friend Janis says, Inchstones! How's that for you? A three and a half year old that drank from a sippy cup for the FIRST TIME EVER!! Talk about patience!!!! I really hope there's something big waiting for us when we die.
I see big things with this sippy cup.
Oh, I forgot to tell you that she can "read" the Brown Bear book on her communication device. She presses all these buttons... I see brown bear looking at me, and then does that for each animal. Then after she's done, she presses the all done button. I will have to video it. It is so cute!
And - a Cooper first... Cooper NEVER eats vegetables. If it is green, he will NOT put it in his mouth - period! So, I went to Whole Foods to get Harlie some probiotics and I went to the frozen vegetable section and saw soy beans. Already shelled, steam in bag. Hmmmm. Murphy likes them. Perhaps, just perhaps, Cooper will try them.
YES! Cooper ate something GREEN!!! Woohoo! And liked them! I thought I was on cloud nine last night at dinner. Seriously, it was crazy good!!! It was such a wonderful dining experience with ALL of my kids drinking by mouth for the first time EVER!!!
Then, after dinner we went outside. I am totally loving the warmer weather. I got out Harlie's tricycle. Last year we had to put straps on the pedals to help her keep her feet on them - she was still a little short for it. Well, she got on it and pedaled like she'd been doing it forever. She could even stop, and then propel herself forward again by pushing the pedals - with no help! WOW! She still lacks the strength to go up an incline - but that's probably right around the corner.
Well, another post full of brags. I could get used to this!
Thanks!
~Christy
It went GREAT!
We only put two ounces in (not sure why) and she drank it all! I showed her on the communication device how to say "drink milk" and she would make it say "drink milk" and then she would take a sip, put it down, then say "drink milk" and then take a sip, put it down, etc.
You should have seen how proud she was of herself! It was so heartwarming. I can't imagine how it must feel to be her. She clearly is starting to realize the things that others do, that she doesn't. And I think she wants to, too. Although Tom did offer her a little taste of ice cream and she said NO for sure to that. Oh well. Baby steps. Or, as my friend Janis says, Inchstones! How's that for you? A three and a half year old that drank from a sippy cup for the FIRST TIME EVER!! Talk about patience!!!! I really hope there's something big waiting for us when we die.
I see big things with this sippy cup.
Oh, I forgot to tell you that she can "read" the Brown Bear book on her communication device. She presses all these buttons... I see brown bear looking at me, and then does that for each animal. Then after she's done, she presses the all done button. I will have to video it. It is so cute!
And - a Cooper first... Cooper NEVER eats vegetables. If it is green, he will NOT put it in his mouth - period! So, I went to Whole Foods to get Harlie some probiotics and I went to the frozen vegetable section and saw soy beans. Already shelled, steam in bag. Hmmmm. Murphy likes them. Perhaps, just perhaps, Cooper will try them.
YES! Cooper ate something GREEN!!! Woohoo! And liked them! I thought I was on cloud nine last night at dinner. Seriously, it was crazy good!!! It was such a wonderful dining experience with ALL of my kids drinking by mouth for the first time EVER!!!
Then, after dinner we went outside. I am totally loving the warmer weather. I got out Harlie's tricycle. Last year we had to put straps on the pedals to help her keep her feet on them - she was still a little short for it. Well, she got on it and pedaled like she'd been doing it forever. She could even stop, and then propel herself forward again by pushing the pedals - with no help! WOW! She still lacks the strength to go up an incline - but that's probably right around the corner.
Well, another post full of brags. I could get used to this!
Thanks!
~Christy
Sippy Cup!
I am SO excited, that I cannot wait until later to blog. I just have to share this right now!
This morning in Feeding Therapy, Allison thought that Harlie looked really interested in self-feeding. So, she went and got a sippy cup.
A SIPPY CUP!
She took the valve out, so it would be free-flowing. And Harlie literally took the sippy cup out of Allison's hands and kept on drinking! Some dripped out of her mouth - but she did GREAT! Now, just to clarify, she only takes one sip at a time. But, eventually she will learn to swallow and keep drinking, taking several drinks in a row. But, for now, one drink at a time is WONDERFUL!!!
Lately, she is all about feeding Cooper and getting him his sippy cup out of the refrigerator. So, maybe she wants to do the same for herself!
When I dropped Harlie and Brandy off at school, she took the sippy cup with her so she could drink during lunch. I am so anxious to see how she does. I wonder if she'll feel more like the other kids if she drinks out of the same kind of cup!
And I can't wait until dinner! I'm going to make a big deal out of letting her get her own sippy cup out of the refrigerator with Cooper's.
I honestly had never even thought of her being able to use a sippy cup. It just wasn't even in my goals yet. I am so wonderfully surprised that we could be here already!!! My heart just swells thinking about her drinking from a sippy cup!!!
A SIPPY CUP!!!!
Here's what we've been using for her feedings. It allows us to control how much goes into her mouth.
But, if she can/has learned that - then she can do it herself! And how wonderful that must feel for her!!!
I really am thrilled. Just thrilled. And I really hope that dinner is as exciting as I'm hoping it will be. I bet Murphy will be excited, too, and I think that will make Harlie feel excited for herself! Now, hopefully I won't crash later.
A SIPPY CUP! Holy cow.
Okay, more later!
~Christy
This morning in Feeding Therapy, Allison thought that Harlie looked really interested in self-feeding. So, she went and got a sippy cup.
A SIPPY CUP!
She took the valve out, so it would be free-flowing. And Harlie literally took the sippy cup out of Allison's hands and kept on drinking! Some dripped out of her mouth - but she did GREAT! Now, just to clarify, she only takes one sip at a time. But, eventually she will learn to swallow and keep drinking, taking several drinks in a row. But, for now, one drink at a time is WONDERFUL!!!
Lately, she is all about feeding Cooper and getting him his sippy cup out of the refrigerator. So, maybe she wants to do the same for herself!
When I dropped Harlie and Brandy off at school, she took the sippy cup with her so she could drink during lunch. I am so anxious to see how she does. I wonder if she'll feel more like the other kids if she drinks out of the same kind of cup!
And I can't wait until dinner! I'm going to make a big deal out of letting her get her own sippy cup out of the refrigerator with Cooper's.
I honestly had never even thought of her being able to use a sippy cup. It just wasn't even in my goals yet. I am so wonderfully surprised that we could be here already!!! My heart just swells thinking about her drinking from a sippy cup!!!
A SIPPY CUP!!!!
Here's what we've been using for her feedings. It allows us to control how much goes into her mouth.
But, if she can/has learned that - then she can do it herself! And how wonderful that must feel for her!!!
I really am thrilled. Just thrilled. And I really hope that dinner is as exciting as I'm hoping it will be. I bet Murphy will be excited, too, and I think that will make Harlie feel excited for herself! Now, hopefully I won't crash later.
A SIPPY CUP! Holy cow.
Okay, more later!
~Christy
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