80%
And then....here is what my blog is "rated"... SO FUNNY!!
This rating was determined based on the presence of the following words:
- dead (2x)
- poop (1x)
TOO FUNNY!!!
Monday, July 30, 2007
Saturday, July 28, 2007
Fun with ABC
So yesterday, I got tired of moping, and we went to the pool, and got a little sun burn. Well, I did. It's so funny how a little sun does the soul good!!
Then last night we went to a special thing ABC was putting on in a park. It was a screening for a couple of Fall shows. Pushing Daisies, and Samantha, Who? It was really fun. They are both very cute shows. But the best part, was I won a gift bag!! Due to my knowledge of Dancing with the Stars. It has 7 DVD's in it. Seasons 1 and 2 of Lost, Desperate Housewives, and... my fav... Grey's Anatomy. And then a "How To" dancing video with one of the judges on DWTS!! Also, a bunch of T shirts, one of which says, "Seriously. Seriously! Oh how I wish it fit. But I also hate calling attention to my chest. Like it needs it! Also, an Umbrella that screams, "I'm a geek who loves Grey's Anatomy!!" Which of course I am. *grin*
They had free popcorn, cotton candy, and soda, which of course the kids took FULL advantage of! It was so nice to be out! The kids had a blast, and I hoping to sell the DVD's on Ebay or something, and bring in some cash!
YAY for me, for crawling out of my hole!!! My laptop is still broken, but at least the desktop is up and running. It's getting a time slot that's the problem! Thanks to all those who expressed their love and concern! You guys are GREAT!!!
Then last night we went to a special thing ABC was putting on in a park. It was a screening for a couple of Fall shows. Pushing Daisies, and Samantha, Who? It was really fun. They are both very cute shows. But the best part, was I won a gift bag!! Due to my knowledge of Dancing with the Stars. It has 7 DVD's in it. Seasons 1 and 2 of Lost, Desperate Housewives, and... my fav... Grey's Anatomy. And then a "How To" dancing video with one of the judges on DWTS!! Also, a bunch of T shirts, one of which says, "Seriously. Seriously! Oh how I wish it fit. But I also hate calling attention to my chest. Like it needs it! Also, an Umbrella that screams, "I'm a geek who loves Grey's Anatomy!!" Which of course I am. *grin*
They had free popcorn, cotton candy, and soda, which of course the kids took FULL advantage of! It was so nice to be out! The kids had a blast, and I hoping to sell the DVD's on Ebay or something, and bring in some cash!
YAY for me, for crawling out of my hole!!! My laptop is still broken, but at least the desktop is up and running. It's getting a time slot that's the problem! Thanks to all those who expressed their love and concern! You guys are GREAT!!!
Ok...enough sulking...CONFERENCE REPORT!!!
Ya know how sometimes, it's so bad, and has been so bad for so long, you just don't have the strength to get out. Well, sorry you had to witness it, but I'm crawling my way out.
And I think I'm ready to tell you about the conference! This may be long...
First off...It was everything I wanted it to be for the boys. Nick and Parker. They got SO MUCH out of it! They got to go to some great classes. How to handle a bully, signing classes, how to make the most out of school. Nick went to a Transition one, about getting ready for Jr High. They each got to do an art project about, "What makes you unique!" They had a blast! Made lots of new friends, and Nick even found puppy love! SO CUTE!
Steve and I, collectively, went to all the classes. Emma, was being hard the first day, and Jack needed a nap. So we switched off. The second day, I spent more time networking, and connecting with new and old friends, and talking to vendors, then in classes. But Steve went, and these were mostly info classes anyway.
The vender's were great! These guys, are changing the world of closing clefts. If I was in charge, they would be cheaper, but hey, I can't be in charge of everything... I even said to the vendor, this makes me want to have another baby with a cleft! Just for the fact that it makes taping so much easier. He told me later he told his boss I said that. Maybe they'll use it on new fliers! Ya right. Now they just need to figure out what to do about nasal stints!! I told them, and they are getting to work on it! *grin* They also have a GREAT product for closing wounds! Check out all their stuff!
This product I was MOST excited about! I wish I had a better grip on how to get it at PCMC. I told the guy demoing it, I would be willing to come to his presentation to our Docs, as a parent. So we'll see! One of our plastic surgeons on the craniofacial team is looking into it. I'm hoping it will go in at the hospital. It has SO many great applications. I talked to him quite a bit. I'll let you know how that goes! Check it out if you haven't. I think it would have saved Jack at least one or more procedures!
Just an overview/Jenny version... They take a 3D picture, and get a mathematical version with precise measurements of the distance between two points. For example, the eyes, or the length of the nose. When measuring the nose, it will give you two measurements. From the first point, right between the eyes, to the second point just around to the tip, straight. The other measures all the bumps and ridges! SO COOL. We did Nick, and Jack. It was amazing, well not really, but the difference between their straight and bumps numbers were so different. Jack's numbers were almost the same. Nick's were quite different. They can also measure mass. Whether it be the cheek, or a breast needing reconstruction.
They also take the CT scan, and meld it with their picture. Then they can move things, and it will tell them all the soft and hard tissue that will be affected if they were to move it that far. For instance, a Jaw extraction. They can map out ahead of time, how far to move it, and know how far is too far. Again, I could see this would have maybe helped Jack. We didn't know until he was IN surgery, that he couldn't have the full lip repair. With this system, maybe they would have know ahead of time. Of course it's all hindsight, and we'll never know, but they can also measure for appliances. They use it for helmets all the time. Jack had to have two molds done. This would eliminate having to take a mold!
ANYWAY...sorry to go off about the 3D MD. It was just so cool! I hope I can be instrumental in getting one in Utah!
Ronald Strauss was one of the presenters, and I believe, we were meant to meet. He and I are going to change the world. Ok, I'm dreaming big, but...HE WANTS TO HEAR MY STORY!!! Our prenatal story. He headed up a discussion, entitled, "Early Starts: Implications of Prenatal Diagnosis for the Care of Craniofacial Conditions." Um, do you think I had anything to say!? maybe a little. We talked after, and he asked me if I was a writer. I told him a little about this here blog, and we exchanged contact info! I'm so excited to have found the person who will help me. I feel like I have won Miss America, and I can talk about my platform!
DON'T TERMINATE BASED ON PRENATAL FINDINGS!!!
I look at Jack now, and can't believe I even considered listening to them. I was just trying to find in the old blog, where I talked about it, and got sucked in. Wow. It's kind of hard to read it, and kind of therapeutic! Weird...
Let's see...what else...OH...
"Hey, Where did our life go? Nurturing a Family Life and A Couple's Connection: A Field Guide to Life After Crisis." Anyone think this one applies to me and Steve?? Ya know, I have to say, the biggest thing we got out of this class, was that we are NORMAL!! Everybody feels this way.
They was a workshop on Dental care with a cleft, and a Parents Guide to bullying. You know, how to make a kid feel REALLY bad! NO... it was GREAT and the teacher was great too!!
There were 2 key note speakers. The first day was Dr Strauss talking about social stigmas, with facial anomalies, and how to help kids with them. Then he showed us a little bit of a study they are doing with teens, and how they handle comments, and stares. They had the same situation, and then changed how the kids handled them. THAT was awesome. It's all in how you react. You can get mad, and offended, or make it an opportunity to educate!
The second day was Cindi Broaddus. Here is an interview with Larry King. She was so neat. Sorry to use that word, but she just was. She has such a great attitude, and outlook on life. Enjoy reading about her!
Tuesday, I had been planning on going home after lunch. We had to drive straight home, and it is 7 hours with no stopping. I told the head of the conference we were leaving, said good bye to a few other people, and the kids BEGGED to stay! *sigh* The last 2 classes were about fighting insurance companies, and then a medical panel answered a lot of questions! Both were great! The kids had fun playing with the Child life specialists, and learning about hospital stuff. They got SO MUCH FUN STUFF! Stuffed animals, hospital stuff, all kinds of things.
Then they had an ice cream social. YUM! The Disney Store had donated a Plush toy for every child at the conference. And we got a gift bag for the family! WOW! This was full to the brim! It had craft stuff, and toys, and dental floss, and toothpaste, and toothbrushes! We joked we'd need a u haul to get all of it home! I'm so glad we stayed. We got to say proper good byes. We headed out of Vegas at 6:00 pm. UGH! We only stopped once! Believe it or not! We had dinner in St. George, and drove straight home from there! The kids slept most of the way, and we got home around 2:30 am. YUCK! Jack unfortunately, was wide awake. But finally went back to sleep around 3 ish.
I'm still sick to my stomach about my pictures. Maybe they will be saved, but I don't have high hopes. I know lots of other people took many, and I've put out a plea for them to share with me!
As I told you before, we didn't get to do anything touristy. We were not only low on funds, but time. The conference kept us busy, and then we were pooped out at night. I did take the boys down the strip Sunday night. And Parker fell asleep! *rolling eyes* It was just as well, all the naked butts on the cabs, are hard to avoid driving down the strip! UGH... there are half naked women EVERYWHERE!!!
So sorry about my mood last time I posted. But I hope you enjoyed my recap of the conference!
And I think I'm ready to tell you about the conference! This may be long...
First off...It was everything I wanted it to be for the boys. Nick and Parker. They got SO MUCH out of it! They got to go to some great classes. How to handle a bully, signing classes, how to make the most out of school. Nick went to a Transition one, about getting ready for Jr High. They each got to do an art project about, "What makes you unique!" They had a blast! Made lots of new friends, and Nick even found puppy love! SO CUTE!
Steve and I, collectively, went to all the classes. Emma, was being hard the first day, and Jack needed a nap. So we switched off. The second day, I spent more time networking, and connecting with new and old friends, and talking to vendors, then in classes. But Steve went, and these were mostly info classes anyway.
The vender's were great! These guys, are changing the world of closing clefts. If I was in charge, they would be cheaper, but hey, I can't be in charge of everything... I even said to the vendor, this makes me want to have another baby with a cleft! Just for the fact that it makes taping so much easier. He told me later he told his boss I said that. Maybe they'll use it on new fliers! Ya right. Now they just need to figure out what to do about nasal stints!! I told them, and they are getting to work on it! *grin* They also have a GREAT product for closing wounds! Check out all their stuff!
This product I was MOST excited about! I wish I had a better grip on how to get it at PCMC. I told the guy demoing it, I would be willing to come to his presentation to our Docs, as a parent. So we'll see! One of our plastic surgeons on the craniofacial team is looking into it. I'm hoping it will go in at the hospital. It has SO many great applications. I talked to him quite a bit. I'll let you know how that goes! Check it out if you haven't. I think it would have saved Jack at least one or more procedures!
Just an overview/Jenny version... They take a 3D picture, and get a mathematical version with precise measurements of the distance between two points. For example, the eyes, or the length of the nose. When measuring the nose, it will give you two measurements. From the first point, right between the eyes, to the second point just around to the tip, straight. The other measures all the bumps and ridges! SO COOL. We did Nick, and Jack. It was amazing, well not really, but the difference between their straight and bumps numbers were so different. Jack's numbers were almost the same. Nick's were quite different. They can also measure mass. Whether it be the cheek, or a breast needing reconstruction.
They also take the CT scan, and meld it with their picture. Then they can move things, and it will tell them all the soft and hard tissue that will be affected if they were to move it that far. For instance, a Jaw extraction. They can map out ahead of time, how far to move it, and know how far is too far. Again, I could see this would have maybe helped Jack. We didn't know until he was IN surgery, that he couldn't have the full lip repair. With this system, maybe they would have know ahead of time. Of course it's all hindsight, and we'll never know, but they can also measure for appliances. They use it for helmets all the time. Jack had to have two molds done. This would eliminate having to take a mold!
ANYWAY...sorry to go off about the 3D MD. It was just so cool! I hope I can be instrumental in getting one in Utah!
Ronald Strauss was one of the presenters, and I believe, we were meant to meet. He and I are going to change the world. Ok, I'm dreaming big, but...HE WANTS TO HEAR MY STORY!!! Our prenatal story. He headed up a discussion, entitled, "Early Starts: Implications of Prenatal Diagnosis for the Care of Craniofacial Conditions." Um, do you think I had anything to say!? maybe a little. We talked after, and he asked me if I was a writer. I told him a little about this here blog, and we exchanged contact info! I'm so excited to have found the person who will help me. I feel like I have won Miss America, and I can talk about my platform!
DON'T TERMINATE BASED ON PRENATAL FINDINGS!!!
I look at Jack now, and can't believe I even considered listening to them. I was just trying to find in the old blog, where I talked about it, and got sucked in. Wow. It's kind of hard to read it, and kind of therapeutic! Weird...
Let's see...what else...OH...
"Hey, Where did our life go? Nurturing a Family Life and A Couple's Connection: A Field Guide to Life After Crisis." Anyone think this one applies to me and Steve?? Ya know, I have to say, the biggest thing we got out of this class, was that we are NORMAL!! Everybody feels this way.
They was a workshop on Dental care with a cleft, and a Parents Guide to bullying. You know, how to make a kid feel REALLY bad! NO... it was GREAT and the teacher was great too!!
There were 2 key note speakers. The first day was Dr Strauss talking about social stigmas, with facial anomalies, and how to help kids with them. Then he showed us a little bit of a study they are doing with teens, and how they handle comments, and stares. They had the same situation, and then changed how the kids handled them. THAT was awesome. It's all in how you react. You can get mad, and offended, or make it an opportunity to educate!
The second day was Cindi Broaddus. Here is an interview with Larry King. She was so neat. Sorry to use that word, but she just was. She has such a great attitude, and outlook on life. Enjoy reading about her!
Tuesday, I had been planning on going home after lunch. We had to drive straight home, and it is 7 hours with no stopping. I told the head of the conference we were leaving, said good bye to a few other people, and the kids BEGGED to stay! *sigh* The last 2 classes were about fighting insurance companies, and then a medical panel answered a lot of questions! Both were great! The kids had fun playing with the Child life specialists, and learning about hospital stuff. They got SO MUCH FUN STUFF! Stuffed animals, hospital stuff, all kinds of things.
Then they had an ice cream social. YUM! The Disney Store had donated a Plush toy for every child at the conference. And we got a gift bag for the family! WOW! This was full to the brim! It had craft stuff, and toys, and dental floss, and toothpaste, and toothbrushes! We joked we'd need a u haul to get all of it home! I'm so glad we stayed. We got to say proper good byes. We headed out of Vegas at 6:00 pm. UGH! We only stopped once! Believe it or not! We had dinner in St. George, and drove straight home from there! The kids slept most of the way, and we got home around 2:30 am. YUCK! Jack unfortunately, was wide awake. But finally went back to sleep around 3 ish.
I'm still sick to my stomach about my pictures. Maybe they will be saved, but I don't have high hopes. I know lots of other people took many, and I've put out a plea for them to share with me!
As I told you before, we didn't get to do anything touristy. We were not only low on funds, but time. The conference kept us busy, and then we were pooped out at night. I did take the boys down the strip Sunday night. And Parker fell asleep! *rolling eyes* It was just as well, all the naked butts on the cabs, are hard to avoid driving down the strip! UGH... there are half naked women EVERYWHERE!!!
So sorry about my mood last time I posted. But I hope you enjoyed my recap of the conference!
Thursday, July 26, 2007
Wish I wasn't home
Coming home to a dirty house...bad idea. Then add all the unpacking...bad idea. Sorry I haven't been on. As I alluded to before my laptop-where I do ALL my stuff- was on the fritz. Well, it is now officially dead, waiting to be revived. Till someone can fit it into his schedule to take it to a professional. When it died, it took all my pictures from Vegas with it. It makes me so sick to my stomach, I can't even tell you. I've been crying about it all day. Every time I think about it, I get a panic attack. It's been a bad day to be cut off from the world. Oh, and the main computer died too. I'm starting to think it's a conspiracy! ...honestly.
So things suck at my house. It's NOT good to be home. There's no food, and we spent all our money in Vegas. I would LOVE to tell you all the wonderfully things that happened in Vegas, but honestly, it's too painful, having just lost all the pictures, and video. Just now it was nice, and now it sucks.
Right now, I'm a freakin loser at the library. So if you comment, I won't know till I can get back here.
*sigh*
My weekend plans, go between, mental hospital, and church campout. Which will win ... I'm not sure at this point.
Sorry to be a bummer, I just don't have it in my to be fake happy, for the 30 minutes I have to tell you I'm not dead, but feel like it.
Hugs, and I hope to feel better soon.
So things suck at my house. It's NOT good to be home. There's no food, and we spent all our money in Vegas. I would LOVE to tell you all the wonderfully things that happened in Vegas, but honestly, it's too painful, having just lost all the pictures, and video. Just now it was nice, and now it sucks.
Right now, I'm a freakin loser at the library. So if you comment, I won't know till I can get back here.
*sigh*
My weekend plans, go between, mental hospital, and church campout. Which will win ... I'm not sure at this point.
Sorry to be a bummer, I just don't have it in my to be fake happy, for the 30 minutes I have to tell you I'm not dead, but feel like it.
Hugs, and I hope to feel better soon.
Tuesday, July 24, 2007
sayin hi real quick!
So...
I thought I show you a couple pictures, We're getting ready to head home, but Here's a couple pictures to tide ya over till I can tell you ALL of our adventures! Ok, not ALL but the good ones anyway.
Call me a loon, I don't care. It's emotional for me! And I've been twice now. Once was for fun, then we needed milk!! HA! It is across the street from our hotel! How cool is that!
The classes were great yesterday, for all of us!! Last night was a dinner and dance. That was WAY fun! The kids, had a blast!! They even put on a little performance. Emma hadn't gone to the class where they learned it, but she didn't care! She was SO cute!!!
So, I'll tell you ALL about it when I get home. We didn't get to do HALF the things I wanted to. BUT the conference we wonderful, and we made some great connections, with friends, and professionals!
The view from out our hotel room! Left to right, Mandalay Bay, the beam of light is the Luxor, and the green building, is the MGM Grand!
I thought I show you a couple pictures, We're getting ready to head home, but Here's a couple pictures to tide ya over till I can tell you ALL of our adventures! Ok, not ALL but the good ones anyway.
Call me a loon, I don't care. It's emotional for me! And I've been twice now. Once was for fun, then we needed milk!! HA! It is across the street from our hotel! How cool is that!
The classes were great yesterday, for all of us!! Last night was a dinner and dance. That was WAY fun! The kids, had a blast!! They even put on a little performance. Emma hadn't gone to the class where they learned it, but she didn't care! She was SO cute!!!
So, I'll tell you ALL about it when I get home. We didn't get to do HALF the things I wanted to. BUT the conference we wonderful, and we made some great connections, with friends, and professionals!
The view from out our hotel room! Left to right, Mandalay Bay, the beam of light is the Luxor, and the green building, is the MGM Grand!
Sunday, July 22, 2007
And we're off....AGAIN!
We are in St George. We left around 11:30, and only had to stop once!! Holy hannah!!! We rolled into town around 4:00. Cool huh!?! The kids immediately went swimming, and Jack and Daddy stayed behind to figure out the internet. Luckily, it's free at this hotel!
Our hotel is so nice! The beds are more comfy then our beds at home! Emma thinks it is the greatest. There is a fridge and microwave. She is amazed by it! So funny!
The ride down we great. Jack only fussed a little, and once I figured out the cold air was blasting on his leg. He was fine! Emma whined a little, but only a little. It really...overall, went well!!
We drove thru the Cove Fort area.
Oh my goodness. It is like a graveyard of trees. It made me teary, in one particular area. Just imagining the fear of EVERYONE involved, as this fire blazed thru 500 square miles. It was humbling to see it in person. I REALLY wanted to ride over to Cove Fort, but we didn't. Everyone was happy. Couldn't risk it ya know? Maybe on the way back! This picture, was the best one I could get, with out stopping. But it really doesn't even begin to tell the story.
So, it's 6:00 AM!! Jack is wide awake, therefore...everyone is! We are heading out, as soon as we can. But like I said, internet isn't free in Vegas....Although I'm sure someone...won't be able to resist. So I may be back on, I may not.
I do wanna take a minute to apologize, to friends I was hoping to hook up with here in St. George. We were feeling very anti social. And before we left, something bad happened to my computer(Steve), and I can't access my email, with the phone number I was supposed to call! Hopefully, one of my other friends got my text I was trying to sneak in, while we were at dinner.
*sigh*
It's just life with 4 kids, and tired parents. Things NEVER go the way you wish, and plan for. Rollin with the punches...that's our motto for this trip!!
Our hotel is so nice! The beds are more comfy then our beds at home! Emma thinks it is the greatest. There is a fridge and microwave. She is amazed by it! So funny!
The ride down we great. Jack only fussed a little, and once I figured out the cold air was blasting on his leg. He was fine! Emma whined a little, but only a little. It really...overall, went well!!
We drove thru the Cove Fort area.
Oh my goodness. It is like a graveyard of trees. It made me teary, in one particular area. Just imagining the fear of EVERYONE involved, as this fire blazed thru 500 square miles. It was humbling to see it in person. I REALLY wanted to ride over to Cove Fort, but we didn't. Everyone was happy. Couldn't risk it ya know? Maybe on the way back! This picture, was the best one I could get, with out stopping. But it really doesn't even begin to tell the story.So, it's 6:00 AM!! Jack is wide awake, therefore...everyone is! We are heading out, as soon as we can. But like I said, internet isn't free in Vegas....Although I'm sure someone...won't be able to resist. So I may be back on, I may not.
I do wanna take a minute to apologize, to friends I was hoping to hook up with here in St. George. We were feeling very anti social. And before we left, something bad happened to my computer(Steve), and I can't access my email, with the phone number I was supposed to call! Hopefully, one of my other friends got my text I was trying to sneak in, while we were at dinner.
*sigh*
It's just life with 4 kids, and tired parents. Things NEVER go the way you wish, and plan for. Rollin with the punches...that's our motto for this trip!!
Saturday, July 21, 2007
And we're off...
The car is clean, momentarily. The bags are packed, well the kids. Got the food, just need to put it in the cooler. The hamsters are visiting a neighbor, and keys have been distributed, in case of emergency. And now Emma is covered in stamping ink.
ARGH!! Guess I need to get busy!
So internet at the resort we are staying at, is $5 (wired) from noon to noon. Check in being at 3:00! So stupid. You can pay $15 and have it for 24 hours.
*rolling eyes* ...Vegas...
So...I'll try to get on and share a couple of pictures, of course. Like I can NOT share anything for 4 whole days!!!
If you REALLY need to tell me something, like you'll just explode, if you can't tell me, email me here:
jenny.simmons@gmail.com
I don't think I'll be able to get my simmonsfamily email.
Till then...
ARGH!! Guess I need to get busy!
So internet at the resort we are staying at, is $5 (wired) from noon to noon. Check in being at 3:00! So stupid. You can pay $15 and have it for 24 hours.
*rolling eyes* ...Vegas...
So...I'll try to get on and share a couple of pictures, of course. Like I can NOT share anything for 4 whole days!!!
If you REALLY need to tell me something, like you'll just explode, if you can't tell me, email me here:
jenny.simmons@gmail.com
I don't think I'll be able to get my simmonsfamily email.
Till then...
Thursday, July 19, 2007
Cookies
Well, got the kids packed. And it was NO small feat. Emma keeps getting clothes to wear out of her suitcase.
*sigh*
Anyway ... Parker wanted to make cookies tonight.
This is what he made....
Before
After
Do YOU think he's excited!?!
*sigh*
Anyway ... Parker wanted to make cookies tonight.
This is what he made....
Before
After
Do YOU think he's excited!?!
Vacation?
This weekend is the first family vacation we have had since we got pregnant with Jack. If truth be told, ON our last vacation, was when we got pregnant. I know, TMI. ANYWAY....
We are heading to Vegas! But this isn't your normal family vacation. We are going to a Family Conference, but we will be split up. Steve and I have classes to go to. Nick has his age group, Parker has his, and Jack and Emma will go to kids camp! You can see our whole schedule at print program. I am excited for the boys, Nick and Parker, to get to do things, and learn, and meet new friends. But I'm nervous about them not having a real vacation. We don't have much time. Steve has taken so much time off work. Last week alone! So...
We are heading out of here on Sat. We are staying in St. George, before heading to Vegas. It's about a 7 hours drive to Vegas, 5 to St. George, WITH NO KIDS!! People have questioned, why stop in St. George. Well, my original answer was to break up the drive. As I have thought about it, Saturday will be our family day. In a perfect world. We'll get up bright and early, and head out before 8:00 am. Maybe even Friday night, if funds pan out... I'd LOVE to drive over to the Grand Canyon, but I'm sure that won't happen.
We'll be so busy in Vegas, I'm really looking forward to Sat. being just us. If we went straight to Vegas, we'd be with all the conference goers already. This way, it's a vacation before the vacation! I REALLY hope it will bring us back together. I'm tempted to leave my laptop home. I'm sure that won't happen though...*smirk* I just want to hang out with my family, ya know? At home, everyone is doing their own thing. Going their own separate ways, sitting in front of a box.
Emma is getting better everyday. But evenings are still hard. I just found out today, that the kids camp/child care, will be "manned" by moms, and respite workers! I feel SO MUCH better knowing that. I knew, they would have people in there who can handle kids with special needs. But it was confirmed this morning. And ya know, the whole conference takes place in a small area of the hotel, so it's not like we'll be in another building or something.
Wish me luck on packing for 5 people. Steve told me last night all he needed was a shirt and a pair of shorts, and he was set! *rolling eyes* My stomach flips, thinking about packing. Emma started yesterday. *rolling eyes again* I'm making my lists, and checking them twice, and then again! I'm sure I'll forget something. Let's just hope it's not anything too expensive. Last time, when we went to Logan, I forgot Jack's bottles... *sigh* Had to turn around.
Things I want to do in Vegas:
~ CVS I really want to go, but I won't die if I can't. It's an emotional thing. There is no CVS in Utah, I know, I'm a dork.
~ In and Out Burger! Oh my they are yummy! I think the boys will love them!
~ Shark Reef. We went when Emma was about 2. It is SO fun. My favorite part is the jelly fish!
I know, short list, but I told you, we are JAM PACKED!!
Wish me luck on bringing my tech dependent family back together... it's gonna be an adventure!
We are heading to Vegas! But this isn't your normal family vacation. We are going to a Family Conference, but we will be split up. Steve and I have classes to go to. Nick has his age group, Parker has his, and Jack and Emma will go to kids camp! You can see our whole schedule at print program. I am excited for the boys, Nick and Parker, to get to do things, and learn, and meet new friends. But I'm nervous about them not having a real vacation. We don't have much time. Steve has taken so much time off work. Last week alone! So...
We are heading out of here on Sat. We are staying in St. George, before heading to Vegas. It's about a 7 hours drive to Vegas, 5 to St. George, WITH NO KIDS!! People have questioned, why stop in St. George. Well, my original answer was to break up the drive. As I have thought about it, Saturday will be our family day. In a perfect world. We'll get up bright and early, and head out before 8:00 am. Maybe even Friday night, if funds pan out... I'd LOVE to drive over to the Grand Canyon, but I'm sure that won't happen.
We'll be so busy in Vegas, I'm really looking forward to Sat. being just us. If we went straight to Vegas, we'd be with all the conference goers already. This way, it's a vacation before the vacation! I REALLY hope it will bring us back together. I'm tempted to leave my laptop home. I'm sure that won't happen though...*smirk* I just want to hang out with my family, ya know? At home, everyone is doing their own thing. Going their own separate ways, sitting in front of a box.
Emma is getting better everyday. But evenings are still hard. I just found out today, that the kids camp/child care, will be "manned" by moms, and respite workers! I feel SO MUCH better knowing that. I knew, they would have people in there who can handle kids with special needs. But it was confirmed this morning. And ya know, the whole conference takes place in a small area of the hotel, so it's not like we'll be in another building or something.
Wish me luck on packing for 5 people. Steve told me last night all he needed was a shirt and a pair of shorts, and he was set! *rolling eyes* My stomach flips, thinking about packing. Emma started yesterday. *rolling eyes again* I'm making my lists, and checking them twice, and then again! I'm sure I'll forget something. Let's just hope it's not anything too expensive. Last time, when we went to Logan, I forgot Jack's bottles... *sigh* Had to turn around.
Things I want to do in Vegas:
~ CVS I really want to go, but I won't die if I can't. It's an emotional thing. There is no CVS in Utah, I know, I'm a dork.
~ In and Out Burger! Oh my they are yummy! I think the boys will love them!
~ Shark Reef. We went when Emma was about 2. It is SO fun. My favorite part is the jelly fish!
I know, short list, but I told you, we are JAM PACKED!!
Wish me luck on bringing my tech dependent family back together... it's gonna be an adventure!
Tuesday, July 17, 2007
Summer rain!!
I LOVE SUMMER RAIN!!!! I always loved running around in it when I was a kid. Enjoy a bit of sunshine at our house, as it rained!!!
Oh the cleverness of me...
Today is SO MUCH BETTER!!! Her urine came back normal. But the nurse suggested giving her a shallow bath. Of course she refused. So I put Jack in, and she soon followed!
I also put the ditropan, and miralax in her choc milk, and she drank it ALL!! She SO MUCH BETTER!! Funny story about the miralax. I did it last night too, she drank a little and walked away. Well I walked past her drink later and it was gone. I knew Emma didn't drink it. I called out to the house, "Who drank the rest of Emma's milk?" Nothing. I started laughing. "I hope you know there was medicine in it!" Later in the evening, Steve says, "Um, what was in Emma's milk." I said, "Well, you bowel movements will be much softer!" Oh my...too funny...
So it's looking up for Emma.
Jack on the other hand...his rash is just getting worse. Now it's bleeding, and oozing. I've started giving him motrin, cuz he is in so much pain. It is just so sad. I've tried everything. Airing out, got pooped on; cotton balls with baby oil, just got worse; acidopholus in his bottles twice a day, nystatin on his bum, no wipes, triple paste AND vasoline. The only thing I haven't tired is cloth diapers, cuz I don't have any anymore. *sigh* I'm taking him to the peds tonight at 6:00, hopefully he has a grand idea. But really is there a prescription paste better than a $27 jar of triple paste!? At least he's happy when there is no poop on him. That's something! And he had a good nap this am.
Pray for his bum to get better...thanks!
I also put the ditropan, and miralax in her choc milk, and she drank it ALL!! She SO MUCH BETTER!! Funny story about the miralax. I did it last night too, she drank a little and walked away. Well I walked past her drink later and it was gone. I knew Emma didn't drink it. I called out to the house, "Who drank the rest of Emma's milk?" Nothing. I started laughing. "I hope you know there was medicine in it!" Later in the evening, Steve says, "Um, what was in Emma's milk." I said, "Well, you bowel movements will be much softer!" Oh my...too funny...
So it's looking up for Emma.
Jack on the other hand...his rash is just getting worse. Now it's bleeding, and oozing. I've started giving him motrin, cuz he is in so much pain. It is just so sad. I've tried everything. Airing out, got pooped on; cotton balls with baby oil, just got worse; acidopholus in his bottles twice a day, nystatin on his bum, no wipes, triple paste AND vasoline. The only thing I haven't tired is cloth diapers, cuz I don't have any anymore. *sigh* I'm taking him to the peds tonight at 6:00, hopefully he has a grand idea. But really is there a prescription paste better than a $27 jar of triple paste!? At least he's happy when there is no poop on him. That's something! And he had a good nap this am.
Pray for his bum to get better...thanks!
Monday, July 16, 2007
monday
Sorry, it's been a hard day. She was up all night. Peed all over the bed, and I had to change it. Jack woke up, and she was screaming. All at about 2:30 am! I called the urolgoist office this morning, and they think she might have an infection. So she wanted to have her urine checked at PCMC. Jack had an appointment, to recheck his hearing, so I dropped her off at my mom's.
When I called to have them bring her up, they weren't ready. *sigh* So Jack and I went to get something to eat. He was so cute! He sat in a highchair across the table from me. It was funny to realize he is getting to be a real person! He was playing peek a boo, and OH MY HECK I forgot to tell you all!!! HE IS SIGNING "MORE"!!!! YIPPEEE!!!!!! He is just getting to personable. And his hearing test was fine, fluid in them, but fine. He wants to recheck in 6 weeks. Then see if we need to put tubes in.
Back to Emma. I did finally get her last night to take ALL her meds! SUCH a relief! It was still hard, but she finally did it! Today, when I met her at the car to go to the lab, she was FREAKING OUT!! She had to pee really bad, and was HYSTERICAL. So I ran her into the lab and grabbed what I needed from them, and ran her to the potty. She was crying and whimpering the WHOLE time. And I had to carry her. ugh We get in there and her pull up was soaked, and of course I didn't have a new one. I had to leave her in the PUBLIC bathroom whimpering horribly, and go get her another one from my mom across the hall. It was SO bad. I got the pee, and gave it to the man behind the glass, and he says, "Did you register?" OH MY HELL!!! So I have to leave her, whimpering, with my mom AGAIN!!! We sat in the waiting room of the lab TRYING to get he to take some motrin, to ease her pain, to no avail. They both fell asleep on the 20 min ride home, but of course woke up, as soon as I laid them down.
We did catch a nap later, she and I, and Nick watched Jack. YAY for Nick!
Tonight... she's been GREAT! Happy, ate dinner, was running around, playing with Nick, and I even took her for a walk in the stroller!
Of course I missed to call from the Dr's office about her urine. I'm hoping, since she didn't call back, it came back negative. Actually, I hope it is positive, so we can FIX IT!!!!!!!!!!!!!!!!!!
I'll let you know tomorrow! Here's to hoping we get some sleep tonight!
When I called to have them bring her up, they weren't ready. *sigh* So Jack and I went to get something to eat. He was so cute! He sat in a highchair across the table from me. It was funny to realize he is getting to be a real person! He was playing peek a boo, and OH MY HECK I forgot to tell you all!!! HE IS SIGNING "MORE"!!!! YIPPEEE!!!!!! He is just getting to personable. And his hearing test was fine, fluid in them, but fine. He wants to recheck in 6 weeks. Then see if we need to put tubes in.
Back to Emma. I did finally get her last night to take ALL her meds! SUCH a relief! It was still hard, but she finally did it! Today, when I met her at the car to go to the lab, she was FREAKING OUT!! She had to pee really bad, and was HYSTERICAL. So I ran her into the lab and grabbed what I needed from them, and ran her to the potty. She was crying and whimpering the WHOLE time. And I had to carry her. ugh We get in there and her pull up was soaked, and of course I didn't have a new one. I had to leave her in the PUBLIC bathroom whimpering horribly, and go get her another one from my mom across the hall. It was SO bad. I got the pee, and gave it to the man behind the glass, and he says, "Did you register?" OH MY HELL!!! So I have to leave her, whimpering, with my mom AGAIN!!! We sat in the waiting room of the lab TRYING to get he to take some motrin, to ease her pain, to no avail. They both fell asleep on the 20 min ride home, but of course woke up, as soon as I laid them down.
We did catch a nap later, she and I, and Nick watched Jack. YAY for Nick!
Tonight... she's been GREAT! Happy, ate dinner, was running around, playing with Nick, and I even took her for a walk in the stroller!
Of course I missed to call from the Dr's office about her urine. I'm hoping, since she didn't call back, it came back negative. Actually, I hope it is positive, so we can FIX IT!!!!!!!!!!!!!!!!!!
I'll let you know tomorrow! Here's to hoping we get some sleep tonight!
Sunday, July 15, 2007
She's walking update...
As of 3:00, she is great! Waiting for her to start whimpering again....but for now...
And...she combed her own hair...pretty huh...
She's Walking!!
THANK GOODNESS!
She is up and walking around. Only for little bits at a time, but still doing it. She even went potty by herself this morning! And slept in a bit.
She is still in a lots of pain. I just didn't expect this much. She can't even wear pants, because it causes too much pressure on her incision. And she's wearing pull ups, still. You know that commercial, "gotta go, gotta go, gotta go right know". That's her to the extreme. The tiniest amount of pee, sends her into a FRENZY. The bladder spasms, and the anticipation of the stinging on the way out, sends her over the edge. And this happens OFTEN. I haven't really kept score, but we had some friends over yesterday, for 2 and a half hours. She peed 6 times.
At least she's is making it most of the time, so we can just put it back on a few times. I asked the nurse to score me a package in the hospital. Good thing too. I went to get more, and they are $15.99!!!! What is that!?!?!? And I HAVE to get Huggies, because they have velcro sides. I can't "pull" something over her incision. Hopefully she'll be done before I need to by more. That is just ridiculous! UGH!! Pull ups are stupid...
Our other BIG challenge is she REFUSES to take her medicine. I know, I know, she's 4, make her. Um NO!! I was forced to take medicine when I was little, I'm still scarred from it. Besides the fact that I don't want to do anything that will put strain on her incision. She shakes, and hold her hands over her mouth. It is just horrid. We did figure out in the hospital, to have her drinking something yummy through a straw, and squirt the medicine in the other side of her mouth. It works better, but...it takes an hour to get her that far. She just cries, I can't!! I can't!! Or...My tummy doesn't want it!!! I really don't know what to do!
I hate when I can't help her. But I hate it worse, when she won't let me. Wow, I just had an epiphany. This must be how it feels for my mom, and others...trying to fix me!! Sorry bout that...
So she is mostly in good spirits, but I feel like she should be MUCH better by now. She usually bounces back from illness and such. Granted she's never had surgery on her bladder. And for the record, the hospital was a LOVELY vacation, and exactly what I was hoping for.
Oh, and since writing this...it's taken me all day...she took motrin. She needs the ditropan, but hey, it's pain relief right?!?!
To make matters worse, she won't let anyone else take care of her. And physically I'm the only one. When she can't walk, she has to be carried with my holding her under her neck and knees, while she has her arms around MY neck. Both Steve and my mom have bad backs, and this carry would break them both! Carrying her upright puts too much stretch on her incision. Even just picking up up to put her on the couch, or bed, or potty, by her armpits, hurts. And she won't let Steve change her pull up. *sigh*
Tomorrow, Jack has his follow up hearing and ENT appointment. I'm SO worried about leaving her with my mom. Hopefully she'll be walking better by then. *sigh* again.
Speaking of Jack, he has a HORRIBLE diaper rash, AND diarrhea. He needs to be change seems like every hour. And HE is screaming in pain. *sigh* It's really fun, when I'm changing Jack, and he is screaming hysterically and shaking from the sting, and Emma starts whimpering in the other room.
But last night, between diaper screams, he found the dust in a sunbeam. Check out the video, in cute videos, on the right. SO CUTE!!! He is so funny, and seems to know it. When he's not playing in the toilet, he is such a joy! And he's walking SO MUCH!! And LOVES to eat. It's hard to keep up sometimes!!
So say a little prayer for ME!! I'm totally rung out. Hoping to turn another corner soon!
She is up and walking around. Only for little bits at a time, but still doing it. She even went potty by herself this morning! And slept in a bit.
She is still in a lots of pain. I just didn't expect this much. She can't even wear pants, because it causes too much pressure on her incision. And she's wearing pull ups, still. You know that commercial, "gotta go, gotta go, gotta go right know". That's her to the extreme. The tiniest amount of pee, sends her into a FRENZY. The bladder spasms, and the anticipation of the stinging on the way out, sends her over the edge. And this happens OFTEN. I haven't really kept score, but we had some friends over yesterday, for 2 and a half hours. She peed 6 times.
At least she's is making it most of the time, so we can just put it back on a few times. I asked the nurse to score me a package in the hospital. Good thing too. I went to get more, and they are $15.99!!!! What is that!?!?!? And I HAVE to get Huggies, because they have velcro sides. I can't "pull" something over her incision. Hopefully she'll be done before I need to by more. That is just ridiculous! UGH!! Pull ups are stupid...
Our other BIG challenge is she REFUSES to take her medicine. I know, I know, she's 4, make her. Um NO!! I was forced to take medicine when I was little, I'm still scarred from it. Besides the fact that I don't want to do anything that will put strain on her incision. She shakes, and hold her hands over her mouth. It is just horrid. We did figure out in the hospital, to have her drinking something yummy through a straw, and squirt the medicine in the other side of her mouth. It works better, but...it takes an hour to get her that far. She just cries, I can't!! I can't!! Or...My tummy doesn't want it!!! I really don't know what to do!
I hate when I can't help her. But I hate it worse, when she won't let me. Wow, I just had an epiphany. This must be how it feels for my mom, and others...trying to fix me!! Sorry bout that...
So she is mostly in good spirits, but I feel like she should be MUCH better by now. She usually bounces back from illness and such. Granted she's never had surgery on her bladder. And for the record, the hospital was a LOVELY vacation, and exactly what I was hoping for.
Oh, and since writing this...it's taken me all day...she took motrin. She needs the ditropan, but hey, it's pain relief right?!?!
To make matters worse, she won't let anyone else take care of her. And physically I'm the only one. When she can't walk, she has to be carried with my holding her under her neck and knees, while she has her arms around MY neck. Both Steve and my mom have bad backs, and this carry would break them both! Carrying her upright puts too much stretch on her incision. Even just picking up up to put her on the couch, or bed, or potty, by her armpits, hurts. And she won't let Steve change her pull up. *sigh*
Tomorrow, Jack has his follow up hearing and ENT appointment. I'm SO worried about leaving her with my mom. Hopefully she'll be walking better by then. *sigh* again.
Speaking of Jack, he has a HORRIBLE diaper rash, AND diarrhea. He needs to be change seems like every hour. And HE is screaming in pain. *sigh* It's really fun, when I'm changing Jack, and he is screaming hysterically and shaking from the sting, and Emma starts whimpering in the other room.
But last night, between diaper screams, he found the dust in a sunbeam. Check out the video, in cute videos, on the right. SO CUTE!!! He is so funny, and seems to know it. When he's not playing in the toilet, he is such a joy! And he's walking SO MUCH!! And LOVES to eat. It's hard to keep up sometimes!!So say a little prayer for ME!! I'm totally rung out. Hoping to turn another corner soon!
Saturday, July 14, 2007
Saturday update!
Check it out!! She is almost sitting!! Look...her feet are OFF the couch!! YAY!So since we last spoke, she took 2 steps, sat on the potty a few times, sat up BY HERSELF, on the edge of the bed, FINALLY took her meds, and ate something!
Last night was HORRIBLE! She would just whimper, and then cry, but wouldn't take her meds! SO WAS MAKING ME CRAZY!!!!!!!! I hate when she won't let me help her! And she just kept chanting..."I can't do it, I can't do it!" UGH UGH UGH
She had a hard time this morning too, but I think she has turned a corner. I hope she'll get walking soon. Last night she was asking if she could get one of those things with stripes. She said, "You know...how some people have wheel chairs? I need something to help me walk!" So if anyone out there has a little kid walker we could borrow for the next couple of days let me know. I think she meant crutches, but that would make it worse! The steps she took last night, were so funny. I was sitting on the sire of the tub, and told her to walk to me. it was like 2 maybe 3 steps. She backed up like 3 mini steps, and then walked to me! It was too funny!!!
Hopefully, today will only get better!
Friday, July 13, 2007
WE ARE HOME!!!
Just wanted to pop on and say we are home! She's ... OK. Not great, not horrid. Still having pain, still won't stand, and cries when she sits.I'm so tired...that baby next to us cried most of the night. She woke up at like 2:00 am SCREAMING in pain. It was AWFUL!! I just wanted to go hold her! I even asked, if she could room with us. I did see what looked like her parents there around 10:00, and then when we went out around 1:00 they were gone. UGH UGH UGH
I had a child life specialist stop by, to help with the emotional aspects of
standing, and general getting out of bed. She brought some fun toys, and it got Emma happier, but she very quickly, she figured out what we were up too. She's too smart for her own good.Then we went out to the hallway, were there is a walkway, and you can look down to the 3rd floor. So the boys got there just in time to play too. They had a great time!
So we are home now, and she had a hard ride home. Whimpered most of the way. It's just yucky. And she won't eat. Keeps saying she's not
hungry. *sigh*She is moving around a bit better, in general. Like moving her legs, and laying on her side. I think it is gravity, at this point that is scaring her. I remember my first days. Gravity is NOT a girl's best friend, after surgery down there!
She is in good spirits. I'll keep you posted on the standing!!
Thursday, July 12, 2007
11:30 PM Some yippees!!!
She's been drinking great, and eating. So...drum roll please...
SHE GOT HER IV OUT!!! YAY!!!
She still is afraid to walk, that her tummy will hurt. Understandable! She is even afraid to stand up. Guess we'll be working on that tomorrow.
We tried to get her to walk, but she just cried and cried. So we gave up. I know a little bit how she feels, having had 2 c sections. Although I will say, she is doing MUCH better than I did. Of course she had her bladder cut into and I had layer, after layer, after layer, cut into... *rolling eyes*
Anyhoo...once she calmed down, and got her bed made up new, we played a little bit, and she was giggling! Oh how I've missed that giggle! We called home and talked to Daddy and the boys. Don't tell her I told you this, but she cried when she first heard each of them. And laughed when we tried to talk to Jack and he just kept pushing the buttons!! Silly boy!!
Then for some reason, we started painting...HER FACE!!! It was fun and she was so happy, and... Emma!!! Notice we have matching flowers on our hands!She also has started talking to the people wearing scrubs! Up until now, she just ignores them. Her nurse tonight said, "Oh Emma, I've never heard your voice! It's so cute!!"
I'm worried about tonight, there is newborn next door who just had heart surgery. UGH!! And NO MOMMY!!!! I really don't get it. So she cries ALOT! Hope I can sleep through it!!
7:00 pm Still here...
Well, she is better, but still here. Right now, she is off all IV meds and fluids. And taking everything orally. But still won't walk.
We're just trying to get food in her. For dinner she ordered, pizza, mac and cheese, butterfinger milkshake, jello, sprite, veggies with dip(ok those are for me) doritos (for later munchies) and a rainbow cupcake!!! She had about 5 spoonfuls of mac and cheese, 1/8 of her 7 inch pizza, and the cupcake!
She has been on 2 walks in the wagon. And spent about 5 minutes blowing bubbles. I got her being cute and happy on video too. YAY!
So it looks like tomorrow. Another night here... let's hope it goes as well as last night!
11:00 AM Good and bad
Well...we went to bed around midnight. I was SO worried about getting any sleep. I woke up to the nurse talking to Emma, but could NOT open my eyes. Once she left, I looked at the clock, and it was ...ready.... 6:30!!! SO NICE!! Don't get me wrong, I still need a nap, like 5 or 6 hours worth.
I sat up and Emma looked over at me, and said... "Hi MOM!!!" Oh my, I almost cried! Her eyes are looking so much better. Peeing all the IV fluids out every hour will do that! She did so great this morning, but now is back to feeling yucky. She's in a lot of pain still, and FREAKS out when she has to pee. It is so exhausting, the whole process. Crying, trying to help her calm down to let it out, trying to convince her to change, changing her. UGH! And this really is a couple times an hour.
When she woke up this morning, she was laying in lots of yucky pee, so we gave her a little sponge bath, and washed her hair. I think it made the bed head worse, but hey...she's clean.
So the plan now is:
~get her to eat
~get her to take her pain meds orally
~stop her IV fluids
~we are switching her to Nubain, which will still be a constant drip, but not has sedating as the Morphine.
~they are also giving her a steroid to help with her upset tummy.
~we really want to get her out of her room. We're going to try a trip to the play room, see if that helps her feel better.
~they also have her on a schedule for blowing bubbles! So cute. It's a way to make sure she's taking deep breaths. And her lungs are not getting filled with fluid from being a blob.
~WALKING. She is not going to walk though till her IV is out. It's just a vicious cycle.
So we MAY go home today, may not. We'll see...
I sat up and Emma looked over at me, and said... "Hi MOM!!!" Oh my, I almost cried! Her eyes are looking so much better. Peeing all the IV fluids out every hour will do that! She did so great this morning, but now is back to feeling yucky. She's in a lot of pain still, and FREAKS out when she has to pee. It is so exhausting, the whole process. Crying, trying to help her calm down to let it out, trying to convince her to change, changing her. UGH! And this really is a couple times an hour.
When she woke up this morning, she was laying in lots of yucky pee, so we gave her a little sponge bath, and washed her hair. I think it made the bed head worse, but hey...she's clean.
So the plan now is:
~get her to eat
~get her to take her pain meds orally
~stop her IV fluids
~we are switching her to Nubain, which will still be a constant drip, but not has sedating as the Morphine.
~they are also giving her a steroid to help with her upset tummy.
~we really want to get her out of her room. We're going to try a trip to the play room, see if that helps her feel better.
~they also have her on a schedule for blowing bubbles! So cute. It's a way to make sure she's taking deep breaths. And her lungs are not getting filled with fluid from being a blob.
~WALKING. She is not going to walk though till her IV is out. It's just a vicious cycle.
So we MAY go home today, may not. We'll see...
Wednesday, July 11, 2007
Remember Jack?!?
I didn't realize how much I missed him till he came up tonight! I guess I've been too busy with Emma. When he first saw me, and looked at me funny for a minute, and then lit up! Oh man he is sweet! This picture is just him being cute with Nick. I can hardly stand it!I got some more video of him walking. He is doing SO great, walking and walking, and walking.
I think it's ironic, to have video of him walking so well, in the hospital!! :)
11:00 pm SO MUCH BETTER!!!
She really is doing much better. She has eaten a little, a cupcake, and ice cream. *rolling eyes*
She really perked up when Steve and the boys came. it was the best I've seen her since we got here. She faded fast, but it was nice to see her talking and interacting with people.
She does keep teetering back and forth with a low grade fever. Don't know what is up with that.
She has gotten WAY more vocal, which is good and bad. It is nice to see her asking for things and expressing her opinion, but...she is demanding, I always do it wrong, and she cries more now about it hurting. But ya know what, I would MUCH rather have that, than the blob!!
We've had the greatest nurses, and staff. We even have the same ones tonight as last night, so that is nice!
We'll see how overnight goes...ugh...dreading it...but I'm more encouraged about going home tomorrow.
Thanks for all the well wishes, and checking in to reading my ramblings...
It's so nice to know people are out there, rooting for us!!
She really perked up when Steve and the boys came. it was the best I've seen her since we got here. She faded fast, but it was nice to see her talking and interacting with people.
She does keep teetering back and forth with a low grade fever. Don't know what is up with that.
She has gotten WAY more vocal, which is good and bad. It is nice to see her asking for things and expressing her opinion, but...she is demanding, I always do it wrong, and she cries more now about it hurting. But ya know what, I would MUCH rather have that, than the blob!!
We've had the greatest nurses, and staff. We even have the same ones tonight as last night, so that is nice!
We'll see how overnight goes...ugh...dreading it...but I'm more encouraged about going home tomorrow.
Thanks for all the well wishes, and checking in to reading my ramblings...
It's so nice to know people are out there, rooting for us!!
6:00 pm update
Well, she has peed so much I have actually lost count. We DID figure out, if we let her pee in a pull up, laying in bed, she does MUCH better! It still hurts like crazy, but at least in the pull up, she can "hold it" while she pees, and not get pee all over her hand. Wouldn't that make you feel better?
She is still on morphine, Toradol (IV ibuprofen), Tylenol, and IV fluids. They want to start her on Lortab, but she can't take that on an empty stomach. Which brings me to our current struggle.
She has had nothing to eat, since Monday night at about 10:30 pm. And even then it was a can of pediasure. It is so sad. She wants to eat. But her tummy doesn't. She'll hold food in her hand, for like 5 minutes just looking at it.
They've said some kids do fine, others like this. At this point I don't even know if she will go home tomorrow. She hasn't even walked yet. She's just a blob in the bed, giving everyone dirty looks. A very stubborn one, but still a blob.
And when she falls asleep, she desats, as in her o2 level goes down. The morphine is famous for suppressing your breathing, but I still hate it!
She also has the WORST startle reflex when she is asleep! I HATE IT. I can't imagine it feels good on her incision,to jerk like that. She'll be totally still and then jerk really bad. It freaks me out every time. But they say it's normal, when weaning off the morphine!
We did go for a walk in a wagon. she "walked" about 5 steps to get to the wagon, hanging on my neck. I was sure I wouldn't be able to stand up, but it was ok! She liked getting out. But they REALLY want her to walk. THe problem is, her IV is in her foot, at the bend in her ankle. So she thinks it hurts. I would think applying pressure to it WOULD hurt! I know when I have an IV in my hand, I don't like to lean on it!
More good news...
Her fever seems to be gone, and she's talking a bit more. She was awake today for a long time, maybe 2 hours or so. The fact that she has an opinion is good. And...
...OH MY HECK!!!
SHE JUST GIGGLED!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
What do ya know...
Maybe it won't be long after all!
She is still on morphine, Toradol (IV ibuprofen), Tylenol, and IV fluids. They want to start her on Lortab, but she can't take that on an empty stomach. Which brings me to our current struggle.
She has had nothing to eat, since Monday night at about 10:30 pm. And even then it was a can of pediasure. It is so sad. She wants to eat. But her tummy doesn't. She'll hold food in her hand, for like 5 minutes just looking at it.
They've said some kids do fine, others like this. At this point I don't even know if she will go home tomorrow. She hasn't even walked yet. She's just a blob in the bed, giving everyone dirty looks. A very stubborn one, but still a blob.And when she falls asleep, she desats, as in her o2 level goes down. The morphine is famous for suppressing your breathing, but I still hate it!
She also has the WORST startle reflex when she is asleep! I HATE IT. I can't imagine it feels good on her incision,to jerk like that. She'll be totally still and then jerk really bad. It freaks me out every time. But they say it's normal, when weaning off the morphine!
We did go for a walk in a wagon. she "walked" about 5 steps to get to the wagon, hanging on my neck. I was sure I wouldn't be able to stand up, but it was ok! She liked getting out. But they REALLY want her to walk. THe problem is, her IV is in her foot, at the bend in her ankle. So she thinks it hurts. I would think applying pressure to it WOULD hurt! I know when I have an IV in my hand, I don't like to lean on it!
More good news...
Her fever seems to be gone, and she's talking a bit more. She was awake today for a long time, maybe 2 hours or so. The fact that she has an opinion is good. And...
...OH MY HECK!!!
SHE JUST GIGGLED!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
What do ya know...
Maybe it won't be long after all!
11:30 am update... PEE HAPPENED!!!
Things are looking up. She finally peed!!!
YAY!!
She also sat up for a minute and painted! It didn't last very long, but hey, she wanted too!! And she wasn't wearing a shirt, so I drew one in. heehee Don't make fun of me...this is a public blog, and there are sickos out there!
Anyway...Now she's asleep. Just waiting for that smile!!!
So it's looking up, a little...
9:30 am Emma update
Still no pee. She still says it hurts, and now it stings to pee. It's bad. They brought in a portable ultrasound, and she has about 160 cc's of pee in her bladder. So everything is working, but her brain is telling her not to, cuz it will hurt! Stupid brain!So the task at hand is getting her to pee. She's not gonna feel any better til she does. She the other task, is convincing her that this is the way to feel better. She is so full of fluid, in this picture she is awake, watching tv.
Also, now she has thrown up the only thing left in her tummy. And she won't put anything in her mouth.
*ugh*
I, am so tired I can barely see straight. And I'm anxiously awaiting the courtesy cart!! :) I REALLY need to catch some more shut eye, but they keep coming in and making her do stuff.
I'll let you know when she pees!!!
3:00 am update
Oh my...
I know none of YOU are awake. I just thought I'd let you know that I am.
*sigh*
We've tried going potty three times now, to no avail. And the last time, about 20 min ago, there was blood in the "hat"(pee collector). Now, the Doctor told me there would be some blood in her urine, but this looked more like just blood. Can I tell you how unsettling it is to see blood in the toilet, coming out of your 4 yr old.
Not good for the mommy, at 2:30 in the morning.
She just sits on the potty, and shakes. Saying, "It hurts, it hurts!" So we gave her some ditropan, and now she is back sound asleep.
The doctor has been called, and is willing to wait it out, and see if she'll go on her own. I'm not sure how I feel about this. They are also weaning her off the morphine, with hopes of taking her completely off by 6 am. They'll give her lortab about a half hour before, but still. She is clearly still in pain. I voiced my concerns, and she said they won't turn it off until she is ready. So that's good!
So...they are coming in at 4:00 to do vitals. And then 6:00 to try to get her to take some crackers, before her first oral pain meds. THAT should be fun!
So...I'm still enjoying time away with my princess, I just wish she could enjoy it a little more!!
See you in a few... :/
I know none of YOU are awake. I just thought I'd let you know that I am.
*sigh*
We've tried going potty three times now, to no avail. And the last time, about 20 min ago, there was blood in the "hat"(pee collector). Now, the Doctor told me there would be some blood in her urine, but this looked more like just blood. Can I tell you how unsettling it is to see blood in the toilet, coming out of your 4 yr old.
Not good for the mommy, at 2:30 in the morning.
She just sits on the potty, and shakes. Saying, "It hurts, it hurts!" So we gave her some ditropan, and now she is back sound asleep.
The doctor has been called, and is willing to wait it out, and see if she'll go on her own. I'm not sure how I feel about this. They are also weaning her off the morphine, with hopes of taking her completely off by 6 am. They'll give her lortab about a half hour before, but still. She is clearly still in pain. I voiced my concerns, and she said they won't turn it off until she is ready. So that's good!
So...they are coming in at 4:00 to do vitals. And then 6:00 to try to get her to take some crackers, before her first oral pain meds. THAT should be fun!
So...I'm still enjoying time away with my princess, I just wish she could enjoy it a little more!!
See you in a few... :/
Tuesday, July 10, 2007
11:00 pm update
Well, she's not so hot. She's on a constant morphine drip, IV fluids, anti nausea meds, and IV ibuprofen. Her pupils are really small, but a little reactive to light. But only a little.
When she does wake up, she says it hurts. Her tummy. Her incision is below the bikini line, and has a dressing on it, and a little catheter hanging out to give her numbing type medicine on her incisions on her bladder.
She has sat up, and went to the potty, but didn't pee. She has another 2 hours to pee, till they do something about it, like a catheter.
*sigh*
She is mostly sleeping, and when she's awake, she is responding, and being stubborn, so that's good. But she is in pain, and I hate that. I hate that she's in pain, with all that medicine.
Hopefully, I'll get SOME sleep tonight, but it's not looking good. Look how comfy my bed looks.
But I'm scared to get in. The pink is my body pillow. 4 pregnancies did bad things to my hips!
They wanna try to get her up at midnight, to try and pee. And it's no easy feat, believe me!
So...if you read this tonight, keep us in your prayers!
Until morning...
When she does wake up, she says it hurts. Her tummy. Her incision is below the bikini line, and has a dressing on it, and a little catheter hanging out to give her numbing type medicine on her incisions on her bladder.
She has sat up, and went to the potty, but didn't pee. She has another 2 hours to pee, till they do something about it, like a catheter.
*sigh*
She is mostly sleeping, and when she's awake, she is responding, and being stubborn, so that's good. But she is in pain, and I hate that. I hate that she's in pain, with all that medicine.
Hopefully, I'll get SOME sleep tonight, but it's not looking good. Look how comfy my bed looks.
But I'm scared to get in. The pink is my body pillow. 4 pregnancies did bad things to my hips!They wanna try to get her up at midnight, to try and pee. And it's no easy feat, believe me!
So...if you read this tonight, keep us in your prayers!
Until morning...
7:00 update/Sleeping Beauty
We're in her room!!
She is so sleepy still, but is mega drugged, so I'm glad she's sleeping!
She's in one of the new ones, and it is SO NICE!!! Oh my, it's like a 4 star hotel with no carpet. :) There is a sofa the folds out into a bed. It looks comfy! I'll let you know. And check out the chair! SO SO SO comfy!!! I hear it reclines! Haven't tried it yet, maybe when I'm done updating...I may never go home!! Well, I do need the sun.
Here's a couple of pictures of the bathroom, I know, I'm obsessed!! But it's so pretty!!
So now I sit... in silence! *sigh* How I love silence!
Gramma and Auntie Ruth took the boys to lunch and a movie, and Dad has gone home to take over.
Hopefully, Emma's best friend will be coming up for a visit tomorrow, and the boys of course. But other than that, we are laying low...
She can come home when she's eating and peeing good! And he said she can eat whatever she wants!! She'll be excited to hear that when she wakes up!
I'll update again in the morning, unless I feel the need to tell you something before then!!
3:30 update
She's done, and we are waiting to go see her in recovery. She did GREAT! Better than expected. And the doctor is gonna let her pee on her own, so NO CATHETER, or TUBES!!!
YAY!!!
Now, every time the phone rings here in the waiting room, we jump, and hope they hang up and say, "a parent for Emma Simmons?" I HATE this wait. It's the wait for her to wake up and be extubated. I REALLY REALLY hate this wait.
Anyways....
I let you know when we are in a room!!!
YAY!!!
Now, every time the phone rings here in the waiting room, we jump, and hope they hang up and say, "a parent for Emma Simmons?" I HATE this wait. It's the wait for her to wake up and be extubated. I REALLY REALLY hate this wait.
Anyways....
I let you know when we are in a room!!!
Emma's 2:30 update
She's been in for about an hour and a half. She was so great this a morning. Only complained once, about being thirsty. NEVER about hunger! YAY! She was calm, and excited to get on with it! As it got closer, she started to get a little worried, so we gave her some versed, which helped a lot. But while we were waiting for it to take effect, she had fun pretending to draw this sandcastle on the wall. So sweet!!We had to be here at 11:15, which was good, so she didn't get too hungry, but we missed the courtesy cart. If you are blessed enough to not know about the courtesy cart, it is a cart the runs around the hospital in the morning, to the different areas, with juice, and coffee, danish type things, and fruit. Bummer...
Well, they just called and they think she'll be done pretty soon. I love that they do hourly phone calls, to update on how they are doing!
I did run into a couple of friends, so that is always nice. One is here too much, the other works here! And since being here, I have heard this is a painful surgery....nice...
So, I'll get back on once she is in her room!!
This picture was taken just before they took her to the OR. She really did great!
Thanks for all the well wishes, spoken, and unspoken!
Monday, July 9, 2007
Girl's Vacation
So tomorrow is the start of Emma and my mini vacation. She is having surgery, and I am enjoying the clean bathroom. :)
Here is what she is having done.
I'm not as nervous as I thought I would be. I don't know why. Maybe it's the 6th time in a year. Maybe I'm in denial. Maybe she isn't worried at all, so I'm not. She even asked me a bit ago, if we could go right now, to the hospital!
We did the pre-surgery class last Thursday. She LOVED it! Her favorite part was learning she will get the IV when she is asleep!
I'm really most excited to spend some one on one time with her. WITHOUT the boys. Jack has taken up SO MUCH of my time, more then a regular baby. I have such mommy guilt over the time spent with Jack, and being too tired from that time spent, to spend any quality time with her.
I know she is having surgery, and it's not a little one. BUT, I will have no one else to take care of but her. I am excited to dote on her. I know she is excited to get away from the boys. But she is excited for them to come visit too!
And can I tell you how different it is to pack for a child, not a baby, to go to the hospital? Even for myself. Jack is pretty high maintenance, when he is in the hospital. But I think she will sleep alot! So I'm bringing a couple of books, and my best friend the laptop here.
So, she'll probably be getting out of surgery around 4:oo pm ish. I'll update as soon as she is out!
Until, then...
Here is what she is having done.
I'm not as nervous as I thought I would be. I don't know why. Maybe it's the 6th time in a year. Maybe I'm in denial. Maybe she isn't worried at all, so I'm not. She even asked me a bit ago, if we could go right now, to the hospital!
We did the pre-surgery class last Thursday. She LOVED it! Her favorite part was learning she will get the IV when she is asleep!
I'm really most excited to spend some one on one time with her. WITHOUT the boys. Jack has taken up SO MUCH of my time, more then a regular baby. I have such mommy guilt over the time spent with Jack, and being too tired from that time spent, to spend any quality time with her.
I know she is having surgery, and it's not a little one. BUT, I will have no one else to take care of but her. I am excited to dote on her. I know she is excited to get away from the boys. But she is excited for them to come visit too!
And can I tell you how different it is to pack for a child, not a baby, to go to the hospital? Even for myself. Jack is pretty high maintenance, when he is in the hospital. But I think she will sleep alot! So I'm bringing a couple of books, and my best friend the laptop here.
So, she'll probably be getting out of surgery around 4:oo pm ish. I'll update as soon as she is out!
Until, then...
Cove Fort Miracle
It's fire season here in Utah. This season is particularly bad. It is SO dry, we haven't had any rain, in like a month. And the heat is in the triple digits. It's so scary.But a couple of stories have caught my attention, and I wanted to share them with you..
There is a fire around The Cove Fort. Here is info about it from their website.
The fort was built to offer protection and refreshment to the traveler. Beginning in 1847, pioneers began settling the high mountain valleys stretching from Idaho to California. They came here to worship in peace and to build homes and communities. The fort is made of lava rock, which workers hauled from west of the property. The fort is 100 square feet, 18.5 feet tall, 4 feet thick at the footings and 2.5 feet thick at the top.
Historic Cove Fort UtahIn 1867, the prophet Brigham Young called Ira Hinckley and his family to come and direct the building and operations of the fort.
Cove Fort has been restored to bring the past a little bit more to life. This is the only fort built by the Latter-day Saints in the 1800's that still stands.
The fire here is the biggest fire Utah has ever seen.
The Cove fort is run by senior couple missionaries. Here is a story on our local news, about the miracle at Cove Fort.
It got me teary. I hope you will find the miracle here, and find the miracles in your life, big and small.
Sunday, July 8, 2007
This is a little late, but I was trying to make another video, and came across this template. It was too cute to not put Emma's make over birthday pictures in it!
Sorry, I wanted to put in right one here, but it is NOT working.
So you're gonna have to GO HERE, to see it!
Enjoy!!
Sorry, I wanted to put in right one here, but it is NOT working.
So you're gonna have to GO HERE, to see it!
Enjoy!!
oh my heavens...
We have been laughing to tears over this one. He had pancakes for breakfast, and had syurp all over his face, making his eyelid stick together!
I grabbed the camera in HOPES of catching it stuck...
Here it is...
Oh and you can see his prosthesis, AND that his soft palate is together!!! COOL!!!
We have been laughing to tears over this one. He had pancakes for breakfast, and had syurp all over his face, making his eyelid stick together!
I grabbed the camera in HOPES of catching it stuck...
Here it is...
Oh and you can see his prosthesis, AND that his soft palate is together!!! COOL!!!
Thursday, July 5, 2007
The whole picture!
At the risk of exposing my "back fat", and fat bum-bum to the world...
Here is the whole picture!!
Amy and Pam win!!!
Heehee, maybe we'll do a harder one next week!!
Thanks for playing!!
Here is the whole picture!!
Amy and Pam win!!!
Heehee, maybe we'll do a harder one next week!!
Thanks for playing!!
Wednesday, July 4, 2007
guessing game
Guess what Jack is laying on?
I'll post the whole picture tomorrow night!
Let the guessing begin!!!
Oh, and Lisa can't guess cause she saw it...and no cheating...
Sunday, July 1, 2007
What a Weekend!!
This weekend, had every emotion possible. Laughter, pain, sadness, empathy, annoyance, sweetness, kindness, exhaustion, shyness, self loathing, spouse loathing, scared, puppy love, coveting, aspiration, true joy, and most of all gratitude!
We-well most of us, most of the time-went to the 17th Annual Cher's Family Retreat for the Children's Craniofacial Association. I hope I can tell you all that happened. I'm gonna go through the above emotion list, and tell you why we felt all of them.
LAUGHTER. So much laughing. Emma had such a good time at Lagoon. She got to go an ALL the kiddie rides, and LOVED all of them. There was a dance Saturday night. She was out on the dance floor, cutting up a rug! At one point, she sat down, and was spinning on her butt! Like breakdancing! Too funny!
Jack was so cute and silly. He just wandered everywhere, like he was at home! They had a stage, to make announcements from, for the entertainment, ect. Jack made his way over to the stage, and climbed right up! He was so cute, I couldn't get him off! Then at the pool, he discovered that when he sat st the edge of the pool, it was slippery enough, that he could spin around on his bum. Around and around, doing it with just his feet! He was so proud of himself!!
PAIN. Well, we went to lagoon. And WALKED everywhere! Need I say more? Also, Steve hurt his back. It was bad enough he only went to dinner, on Friday, and Saturday. He missed, the Ice Cream Social, Lagoon, and the Pool Party.
SADNESS. As mentioned above, Steve couldn't do most of the weekend. We were sad to not have Daddy with us. Also, Nick was at scout camp. So we missed him too!
But mainly, there were so many kids there, whose "appearance" makes me sad. Sad, because I KNOW how the world treats them. Sad, that because of their appearance, so many people will not see the wonderful people that they are. They are kids, and PEOPLE, just like the rest of us. Sad, because some of them look like they are in physical pain. Sad, watching their parents take care of them, and knowing it is a lifelong process.
EMPATHY. I got to meet and chat with some moms. Even though our diagnosis' may be different, we have in common, that our kids "need procedures", that they spend WAY too much time in the hospital, that they receive therapy. The biggest thing we have in common, is the doctors gave us ALL no hope. That my friend is empathy.
Annoyance. Let's see. I was annoyed to have to go to Lagoon...BY MYSELF! Annoyed that Parker, at first, only wanted to do what HE wanted to do! Annoyed to we couldn't stay in the hotel, and the kids asked EVERY night, if we could stay. Annoyed that it was SO hot at Lagoon. That Lagoon a beach was so crappy. That I didn't have enough money to get the kids stuff. But mostly, things were GOOD enough, that these annoyances were over shadowed by the fun times!
SWEETNESS. Watching all the kids interact with each other, and be completely accepted.was amazing. Watching MY children, not notice anything is wrong with them, totally sweet!
KINDNESS. People were so kind to us. They would stop and talk to Jack, and the rest of the kids. You know, when you are in a room full of people, you have never met, but you have a very special thing in common. There is a kindness, you don't find in the outside world. At Lagoon, I knew, if Parker got lost, (which he did, see the scared paragraph) that he could approach someone wearing a CCA shirt, and he would be fine. We were treated like family. With kindness, and love. And in return, it was easy to reciprocate! It doesn't get better than that!
EXHAUSTION. Do I really need to expand on this? Did I mention Nick wasn't with us either? I was pretty much on my own, the whole weekend. At least when Nick is around, I can leave Jack with him, and he'll watch Jack, and play with Emma. He can get Jack in and out of his car seat. He is a HUGE helper. And he wasn't there. And... it was over 100 degrees all weekend.
Plus all the emotional energy that goes into walking into a room full of strangers, yet family. Ya know what I mean? And...worrying about Steve, and Nick the whole time didn't help.
SHYNESS. I know, I know... Jenny shy? Well, I do better with...a wingman. I was all alone, well with the kids. It is hard to meet people, when I have to keep my eye on everyone, especially the ever wandering baby. I also, don't look the way I want. I'm much bigger than usual, and it's hard for me...RIGHT NOW...to walk into a group of people, and be the center of attention. I'm better one on one. I tired really hard to break out, and did much better, but too late in the weekend. Which brings me to my next emotion.
SELF LOATHING, and SPOUSE LOATHING. I am SO mad at my self, for letting my insecurities get to me. And I am SO mad at Steve for hurting his back. Both of which are self destructive, but I'm working on it! Steve didn't do it on purpose! Sitting there, by myself, was maddening. But I couldn't do it got off my butt and meet people! I finally had to tell myself to do it or I'd regret it. I did it, but too late. So I'm still mad at myself, but not as much as I would have been. I'm also mad that I forgot my camera Sat. We got some cute ones at Lagoon, but it was just us. I didn't get any pictures of our new friends. Someone is going to post everyone's pictures to snap fish or something. As soon as I get some, I'll post them.
SCARED. We lost Parker at Lagoon, for about 45 minutes. At first I was mad. Then as time wore on, I got scared. We took a bus from the hotel. The bus was leaving Lagoon promptly at 4:00. He went missing around 2:00. I started to think how scared Parker must have been, knowing all of those facts too. We finally ran into him, and he was...scared, and relieved to have found us.
I also went on the Tidal Wave with Emma. Oh my...I was afraid for me, and had a death grip on Emma. SHE loved it! *rolling eyes* Also, at one point, Emma and I were in line for a ride, and Parker had Jack. He took him to fill up the water bottle, and they went out of my sight range. It was only about 3 minutes, but I had just found Parker, and all those emotions came back, and now Jack was missing too. K, they weren't actually missing, but I was scared they would be.
PUPPY LOVE. Parker "hooked up". He is such a Casanova! He had won some glass marbles,
and glass flowers in a Chinese auction. He wanted to call Nick, and have him bring one of the flowers "in case" he met someone, so he could give it to her! I told him um...no. Anyway, during the dance, I looked over, and Parker is dancing with a cute little girl. He came over to introduce her to us. They were so cute, and hung out all night. Steve took this picture with his phone, but it is better than nothing!
I asked Parker last night if she had a sibling who was there, he said, "Nope, they were there for her!" He didn't even know what was "wrong" with her, nor did he care. I'm so proud of him. They gave everyone a directory, with contact info, diagnosis, and Dr. I looked her up when we got home. She has craniosynostosis. They exchanged cell phone numbers, and emails. She lives in Florida. Kind of near Steve's mom. He was so cute. Although... I am dreading what the future will be like with this kid!
COVETING. As dumb as it sounds. I was actually jealous of all the kids with a syndrome. Here is a list of syndromes that CCA considers craniofacial disorders. Sure Jack has a cleft lip and palate. But he also has hydrocephalus, and a brain malformation, and Poland syndrome. He doesn't have anything that encompasses them all. And I get tired of having to list everything. When you have Apert syndrome, you can find doctors who specialize in it. When you go to the ER, you just tell them he has Pfeiffer syndrome. I know...the grass is always greener.
Also, we were VERY covetous of the people who got to stay in the hotel!!
We-well most of us, most of the time-went to the 17th Annual Cher's Family Retreat for the Children's Craniofacial Association. I hope I can tell you all that happened. I'm gonna go through the above emotion list, and tell you why we felt all of them.
LAUGHTER. So much laughing. Emma had such a good time at Lagoon. She got to go an ALL the kiddie rides, and LOVED all of them. There was a dance Saturday night. She was out on the dance floor, cutting up a rug! At one point, she sat down, and was spinning on her butt! Like breakdancing! Too funny!
Jack was so cute and silly. He just wandered everywhere, like he was at home! They had a stage, to make announcements from, for the entertainment, ect. Jack made his way over to the stage, and climbed right up! He was so cute, I couldn't get him off! Then at the pool, he discovered that when he sat st the edge of the pool, it was slippery enough, that he could spin around on his bum. Around and around, doing it with just his feet! He was so proud of himself!!
PAIN. Well, we went to lagoon. And WALKED everywhere! Need I say more? Also, Steve hurt his back. It was bad enough he only went to dinner, on Friday, and Saturday. He missed, the Ice Cream Social, Lagoon, and the Pool Party.
SADNESS. As mentioned above, Steve couldn't do most of the weekend. We were sad to not have Daddy with us. Also, Nick was at scout camp. So we missed him too!
But mainly, there were so many kids there, whose "appearance" makes me sad. Sad, because I KNOW how the world treats them. Sad, that because of their appearance, so many people will not see the wonderful people that they are. They are kids, and PEOPLE, just like the rest of us. Sad, because some of them look like they are in physical pain. Sad, watching their parents take care of them, and knowing it is a lifelong process.
EMPATHY. I got to meet and chat with some moms. Even though our diagnosis' may be different, we have in common, that our kids "need procedures", that they spend WAY too much time in the hospital, that they receive therapy. The biggest thing we have in common, is the doctors gave us ALL no hope. That my friend is empathy.
Annoyance. Let's see. I was annoyed to have to go to Lagoon...BY MYSELF! Annoyed that Parker, at first, only wanted to do what HE wanted to do! Annoyed to we couldn't stay in the hotel, and the kids asked EVERY night, if we could stay. Annoyed that it was SO hot at Lagoon. That Lagoon a beach was so crappy. That I didn't have enough money to get the kids stuff. But mostly, things were GOOD enough, that these annoyances were over shadowed by the fun times!
SWEETNESS. Watching all the kids interact with each other, and be completely accepted.was amazing. Watching MY children, not notice anything is wrong with them, totally sweet!
KINDNESS. People were so kind to us. They would stop and talk to Jack, and the rest of the kids. You know, when you are in a room full of people, you have never met, but you have a very special thing in common. There is a kindness, you don't find in the outside world. At Lagoon, I knew, if Parker got lost, (which he did, see the scared paragraph) that he could approach someone wearing a CCA shirt, and he would be fine. We were treated like family. With kindness, and love. And in return, it was easy to reciprocate! It doesn't get better than that!
EXHAUSTION. Do I really need to expand on this? Did I mention Nick wasn't with us either? I was pretty much on my own, the whole weekend. At least when Nick is around, I can leave Jack with him, and he'll watch Jack, and play with Emma. He can get Jack in and out of his car seat. He is a HUGE helper. And he wasn't there. And... it was over 100 degrees all weekend.
Plus all the emotional energy that goes into walking into a room full of strangers, yet family. Ya know what I mean? And...worrying about Steve, and Nick the whole time didn't help.
SHYNESS. I know, I know... Jenny shy? Well, I do better with...a wingman. I was all alone, well with the kids. It is hard to meet people, when I have to keep my eye on everyone, especially the ever wandering baby. I also, don't look the way I want. I'm much bigger than usual, and it's hard for me...RIGHT NOW...to walk into a group of people, and be the center of attention. I'm better one on one. I tired really hard to break out, and did much better, but too late in the weekend. Which brings me to my next emotion.
SELF LOATHING, and SPOUSE LOATHING. I am SO mad at my self, for letting my insecurities get to me. And I am SO mad at Steve for hurting his back. Both of which are self destructive, but I'm working on it! Steve didn't do it on purpose! Sitting there, by myself, was maddening. But I couldn't do it got off my butt and meet people! I finally had to tell myself to do it or I'd regret it. I did it, but too late. So I'm still mad at myself, but not as much as I would have been. I'm also mad that I forgot my camera Sat. We got some cute ones at Lagoon, but it was just us. I didn't get any pictures of our new friends. Someone is going to post everyone's pictures to snap fish or something. As soon as I get some, I'll post them.
SCARED. We lost Parker at Lagoon, for about 45 minutes. At first I was mad. Then as time wore on, I got scared. We took a bus from the hotel. The bus was leaving Lagoon promptly at 4:00. He went missing around 2:00. I started to think how scared Parker must have been, knowing all of those facts too. We finally ran into him, and he was...scared, and relieved to have found us.
I also went on the Tidal Wave with Emma. Oh my...I was afraid for me, and had a death grip on Emma. SHE loved it! *rolling eyes* Also, at one point, Emma and I were in line for a ride, and Parker had Jack. He took him to fill up the water bottle, and they went out of my sight range. It was only about 3 minutes, but I had just found Parker, and all those emotions came back, and now Jack was missing too. K, they weren't actually missing, but I was scared they would be.
PUPPY LOVE. Parker "hooked up". He is such a Casanova! He had won some glass marbles,
and glass flowers in a Chinese auction. He wanted to call Nick, and have him bring one of the flowers "in case" he met someone, so he could give it to her! I told him um...no. Anyway, during the dance, I looked over, and Parker is dancing with a cute little girl. He came over to introduce her to us. They were so cute, and hung out all night. Steve took this picture with his phone, but it is better than nothing!I asked Parker last night if she had a sibling who was there, he said, "Nope, they were there for her!" He didn't even know what was "wrong" with her, nor did he care. I'm so proud of him. They gave everyone a directory, with contact info, diagnosis, and Dr. I looked her up when we got home. She has craniosynostosis. They exchanged cell phone numbers, and emails. She lives in Florida. Kind of near Steve's mom. He was so cute. Although... I am dreading what the future will be like with this kid!
COVETING. As dumb as it sounds. I was actually jealous of all the kids with a syndrome. Here is a list of syndromes that CCA considers craniofacial disorders. Sure Jack has a cleft lip and palate. But he also has hydrocephalus, and a brain malformation, and Poland syndrome. He doesn't have anything that encompasses them all. And I get tired of having to list everything. When you have Apert syndrome, you can find doctors who specialize in it. When you go to the ER, you just tell them he has Pfeiffer syndrome. I know...the grass is always greener.
Also, we were VERY covetous of the people who got to stay in the hotel!!
ASPIRATION. There were so many people I want to grow up to be like. So many families, handling things so much better than me. At least on the surface. I want to be able to pull off an event like that. I want to be a volunteer for an event like that. I want to hold fund raisers, like the other families do. Someday....I hope!
TRUE JOY. I wish I had video of the entire event. I wish I could show you the true joy on the faces of all the kids, as they saw others like them. As they saw friends from last year. As they realized it was ALL YOU CAN EAT ice cream the first night. My kids alone...had at least 4 trips to the ice cream buffet.
Then it happened. They had a Chinese auction, where people donated gift baskets, for those who wanted them, to bid on. Well, each one has a state theme. Since Steve or Nick couldn't come to some of the events, my mom took their place. Well, someone brought a Boston basket.
OH MY...
She wanted that basket so bad, I thought she might die if she didn't get it. The raffle tickets were like 20 for $5. My mom got $20 worth. We spent most of the first night, filling them out. She was absolutely desperate to win that basket. She came back on Friday for dinner, since Nick was at scout camp, and bought even more.
Well...she WON!!! The look on her face, was true joy! Parker also won the Marbles he was dying to have, so true joy rang out at our table!
I had so much fun, watching MY kids have fun. It was the look on their face when I said, SURE!, to, "Can I have more ice cream?" Or the look Parker has running off a cool ride at Lagoon. Or the look on Jack's face, when he finds a friend. Or even hearing all about scout camp from Nick. Or watching Emma on the dance floor. It's been such a hard year and a half. It's about time we had some true joy!
GRATITUDE. On the way to the hotel, Parker said, "I'm so glad Jack was born! We'd never get to do cool stuff like this if it wasn't for him!" As exhausting as Jack has been, well not him per se, but the things he comes with, he has opened so many doors for us. He has opened our hearts to kids like, or worse then him.
I'm grateful for Cher, and all the people who worked so hard to put together such a fun event. Everybody got a cool welcome basket. It had a cute black CCA t shirts for everyone in the family, white EVENT shirts(Parker is wearing it in the picture) ,a cute stuffed cat, that I still don't know the significance of. But the big surprise...Cher gave ALL the families a $50 Gift Certificate to use in the Hotel. We got to have dinner in the coffee shop. It was a very fancy resteraunt, and the kids were hilarious! Emma had ordered a grilled cheese. The waitress brought out a roll for everyone, with a pat of butter, and jelly. They were SO excited! Emma dug right in, and after a minute looked at me and said, "Is the my grilled cheese?" They don't get out much!! ;) But I digress...
I am grateful, the Jack only has a cleft lip and palate, hydrocephalus, a brain malformation, and Poland syndrome. Being around all the different syndromes, I am humbled by what Jack has.
I am grateful that the Lord sent him to us, and that he found other families to send special kids to, and that these families accepted the challenge. We are ALL better people because of Him.
I am grateful to have had divine intervention. I could have NEVER made it through the weekend, without a LOT of help from the man upstairs.
Lastly, I'm grateful that YOU read my whole story!! :)
Check back, because I'll have pictures soon. The gallery is giving me problems, and again, I didn't have my camera, so I'm counting on others!!!
TRUE JOY. I wish I had video of the entire event. I wish I could show you the true joy on the faces of all the kids, as they saw others like them. As they saw friends from last year. As they realized it was ALL YOU CAN EAT ice cream the first night. My kids alone...had at least 4 trips to the ice cream buffet.
Then it happened. They had a Chinese auction, where people donated gift baskets, for those who wanted them, to bid on. Well, each one has a state theme. Since Steve or Nick couldn't come to some of the events, my mom took their place. Well, someone brought a Boston basket.
OH MY...
She wanted that basket so bad, I thought she might die if she didn't get it. The raffle tickets were like 20 for $5. My mom got $20 worth. We spent most of the first night, filling them out. She was absolutely desperate to win that basket. She came back on Friday for dinner, since Nick was at scout camp, and bought even more.
Well...she WON!!! The look on her face, was true joy! Parker also won the Marbles he was dying to have, so true joy rang out at our table!
I had so much fun, watching MY kids have fun. It was the look on their face when I said, SURE!, to, "Can I have more ice cream?" Or the look Parker has running off a cool ride at Lagoon. Or the look on Jack's face, when he finds a friend. Or even hearing all about scout camp from Nick. Or watching Emma on the dance floor. It's been such a hard year and a half. It's about time we had some true joy!
GRATITUDE. On the way to the hotel, Parker said, "I'm so glad Jack was born! We'd never get to do cool stuff like this if it wasn't for him!" As exhausting as Jack has been, well not him per se, but the things he comes with, he has opened so many doors for us. He has opened our hearts to kids like, or worse then him.
I'm grateful for Cher, and all the people who worked so hard to put together such a fun event. Everybody got a cool welcome basket. It had a cute black CCA t shirts for everyone in the family, white EVENT shirts(Parker is wearing it in the picture) ,a cute stuffed cat, that I still don't know the significance of. But the big surprise...Cher gave ALL the families a $50 Gift Certificate to use in the Hotel. We got to have dinner in the coffee shop. It was a very fancy resteraunt, and the kids were hilarious! Emma had ordered a grilled cheese. The waitress brought out a roll for everyone, with a pat of butter, and jelly. They were SO excited! Emma dug right in, and after a minute looked at me and said, "Is the my grilled cheese?" They don't get out much!! ;) But I digress...
I am grateful, the Jack only has a cleft lip and palate, hydrocephalus, a brain malformation, and Poland syndrome. Being around all the different syndromes, I am humbled by what Jack has.
I am grateful that the Lord sent him to us, and that he found other families to send special kids to, and that these families accepted the challenge. We are ALL better people because of Him.
I am grateful to have had divine intervention. I could have NEVER made it through the weekend, without a LOT of help from the man upstairs.
Lastly, I'm grateful that YOU read my whole story!! :)
Check back, because I'll have pictures soon. The gallery is giving me problems, and again, I didn't have my camera, so I'm counting on others!!!
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