The good news is that I have a lot of pictures to upload.
The bad news is that the internet at our house isn’t working, so I can’t upload them.
More good news is that we are working hard to resolve the situation and we hope to be back online soon.
In the meantime, Ella continues to amaze us. Her sentences have started really blossoming. She says 5-6 word sentences with ease, and now she is really starting to express some of her own opinion into what she says. It used to be that if we said, “I love you sweet girl.” Ella would repeat back and say, “Love you sweet girl.” Now when we say the same thing she says, “Love you mommy.” And last night after her boo boos she was laying on the table and I was singing to her and playing (like we do every night). So she says to me, “Mommy kiss Ella’s butt?” I don’t know where she got this, but luckily she had a brand new diaper on so I started pretending like I was kissing her butt. She was laughing hysterically and all of a sudden said, “Mommy funny!”
Unfortunately the temper tantrums have also turned into something new and colorful…to say the least. She has decided that if she doesn’t get her way she’s going to cry. It starts off fake, but she just keeps working at it until there are real tears. And the first thing she does when she doesn’t get her way is lay on the floor and roll around…while doing her best to cry. It’s quite the show.
Ella has learned some fun new games that she loves to play. First, we turn on the radio in her room and everyone gets a ribbon. Then we dance around her room while shaking the ribbon. Suddenly Ella will say, “Take it down low!” So we shake our ribbons to the ground. Then she’ll say, “Up high!” So we shake our ribbons over our heads. Joe and I often laugh about what that whole event must look like. I sure hope there isn’t a hidden video camera in Ella’s room. She has also learned how to play hide and seek, which is the most fun! Joe and Ella will be off somewhere in another room and decide to sneak up on me. Soon I hear “Shhh, we’re going to get mommy.” So I do what any mom would do…I hide. They come into the room looking for me and I jump out and say “BOO!” Ella bursts into laughter and says, “Mommy got you!” Then daddy goes and hides and Ella and I count to 5. Then we go find daddy. This goes back and forth until Joe and I decide that we’re tired and can’t take it anymore. Ella could play hide and seek forever!
Ella has also really started playing pretend. For her birthday Grammy Janet gave her a doll house and 3 dolls (the mommy, daddy and Ella) then later brought her the doggie to go with the family. Yesterday Ella was in the basement and I was upstairs. I heard her talking and she seemed to be having a conversation, so I went down to check on her. She was standing at her doll house and was playing with the daddy. She would say things like “Daddy, sit down in seat,” and “Hi daddy. Hi mommy.” And she had them walking around the house and sitting on the furniture, etc. She even had them playing games that Ella and daddy play. It was so cute! I love seeing her imagination grow.
Joe started back to school last week. Only 13 weeks left then he’s out for good! I can hardly believe it. I know I say it a lot, but I am so proud of him and all of his hard work. Next comes the really hard work…looking for a job. We both know that God has the perfect job out there and we’re eager to see what He has in store for us next!
Monday, August 31, 2009
Wednesday, August 26, 2009
Morning Ella
I’ve never been much of a morning person. When I was a kid my mom used to get as creative as she could just to get me out of bed so I could get ready for school. At one point I remember that every morning she would come into my room and bring me breakfast in bed (a bagel with cream cheese) just so that I would wake up. I’m still not much of a morning person. I would much rather stay up until midnight or later just watching TV and then sleep in late in the morning.
Ella is the same way. Even at 2 she does all she can to postpone going to bed. After boo boos and brushing her teeth she knows what comes next. So she starts with, “Call Gi Gi? Call Paw Paw? Paw Paw banjo? Gi Gi on the computer?” So we usually call Gi Gi and Paw Paw and chat for a few minutes. Next comes watching Larry, Mickey, Elmo or whoever else is the character of the moment. She begs to watch them on the computer, so we go to You Tube and watch a couple of different blurbs. Now it’s time to venture into Ella’s room where she starts in on her books. “Can we read bible?” So we read her little bible. Then comes whatever book she wants to read next…8 Little Monkeys, The Acorn and the Oak Tree, Mickey Mouse, etc. I have started limiting her to 2 books (3 if they’re short) because otherwise we’d read everything on her bookshelf….twice. After the books she knows it time…we pray as a family and she and I get to rock a little bit. Then, it’s off to bed. (I’m a bit nervous for how this will go down once she is in a regular bed and is able to climb out easily.)
But even though neither Ella nor I are morning people, my favorite time of the day is in the morning…right when Ella is just waking up. Her skin is cool and soft and her hair is all over the place. This is when she’s at her most cuddly time. I love picking her up and just holding her cheek to cheek. Sometimes she’ll rest her head on my shoulder and we’ll just stand in the middle of her room swaying. I take everything in...her smell, her feel, the little sound of her breathing...I memorize all of it. Then suddenly, her head will perk up and she’ll say something that is obviously very important to a 2 year old, and the moment has passed. She's off and running to see daddy or grab her Mr. Potato Head (Mato head).
But that moment…that short time spent together…that is what gets me through my day. I love that kid!
Ella is the same way. Even at 2 she does all she can to postpone going to bed. After boo boos and brushing her teeth she knows what comes next. So she starts with, “Call Gi Gi? Call Paw Paw? Paw Paw banjo? Gi Gi on the computer?” So we usually call Gi Gi and Paw Paw and chat for a few minutes. Next comes watching Larry, Mickey, Elmo or whoever else is the character of the moment. She begs to watch them on the computer, so we go to You Tube and watch a couple of different blurbs. Now it’s time to venture into Ella’s room where she starts in on her books. “Can we read bible?” So we read her little bible. Then comes whatever book she wants to read next…8 Little Monkeys, The Acorn and the Oak Tree, Mickey Mouse, etc. I have started limiting her to 2 books (3 if they’re short) because otherwise we’d read everything on her bookshelf….twice. After the books she knows it time…we pray as a family and she and I get to rock a little bit. Then, it’s off to bed. (I’m a bit nervous for how this will go down once she is in a regular bed and is able to climb out easily.)
But even though neither Ella nor I are morning people, my favorite time of the day is in the morning…right when Ella is just waking up. Her skin is cool and soft and her hair is all over the place. This is when she’s at her most cuddly time. I love picking her up and just holding her cheek to cheek. Sometimes she’ll rest her head on my shoulder and we’ll just stand in the middle of her room swaying. I take everything in...her smell, her feel, the little sound of her breathing...I memorize all of it. Then suddenly, her head will perk up and she’ll say something that is obviously very important to a 2 year old, and the moment has passed. She's off and running to see daddy or grab her Mr. Potato Head (Mato head).
But that moment…that short time spent together…that is what gets me through my day. I love that kid!
Monday, August 24, 2009
Deep in the Heart of Texas
I know…I know. It has been over a week since my last post. Please don’t shun Team Joella and never visit us again. We’ve been busy! Actually, we’ve been on vacation, which is way more important than just being busy.
Last Monday we flew to Dallas, TX to visit my extended family (grandparents, aunts, uncles and cousins). Ella did pretty good on the plane, but was not keen about riding in a little car. Since she’s used to the minivan, whenever we have to go somewhere in a little 4 door car she doesn’t like it. Once we put her video up for her to watch she did ok, thank goodness. We stayed with Aunt Gail and Uncle Clay in Garland. Ella was her typical shy self. She did warm up eventually, but she never fully let down her guard. We spent Monday afternoon at the house just letting Ella get acclimated to all the new stuff around her. We also went for a dip in Clay and Gail’s pool. Ella has never been a fan of swimming pools. We think it’s mainly because there are a lot of kids around splashing and going crazy, and the water is usually too cold for her. Not so in the Texas heat. The pool was like bathwater! It was so nice and warm and since there were just 4 of us around, she didn’t have to worry about other kids. She was still nervous, but she warmed up to the idea and soon she was floating by herself in the little floaties and even asking daddy to jump off the diving board. That night we went to cousin Thomas and Jessica’s house for dinner. They made a wonderful steak with all the sides. Ella loved it and just kept shoving steak in her mouth.
A little side note: Aunt Gail bought a little seat for Ella to eat in and the back was a lion. Ella is in a new lion phase so she instantly fell in love with this seat. She would ask to sit in her lion seat and as soon as I put her in it she would turn around and say "Hi Lion!" then blow the lion kisses.
Tuesday morning we relaxed around the house then headed to a Mexican food restaurant for dinner. It was SO good! I love Mexican food and my only problem with the east is that I have yet to find a great Mexican food restaurant. We’ve found some that will suffice, but nothing amazing. Ella was exhausted and slept all the way through lunch. After lunch we headed out to the farm to see Big Mama and Big Daddy. Ella warmed up very quickly once she saw the piano. She was very excited that her mommy could peck out ABC’s, Twinkle Twinkle (which is the same tune, in case you didn’t know), the Itsy Bitsy Spider and of course, Uncle John Had a Farm. We had a yummy dinner and as we were leaving she even let Big Mama give her a kiss. She must have felt the Ella bond (Big Mama is the original Ella and little Ella is named after her).
Wednesday we headed back out to the farm for lunch. We grabbed Subway sandwiches on the way. As a side note, this particular Subway needed some serious operational intervention. There is a Subway located right across the street from my office and I eat there almost every day. At lunch that place is packed, but the workers have their system down to a science. Each person is in charge of just a couple of things and they have their job down perfectly. They don’t break from their section because that’s what it takes for the system to work. In Texas, however, I’m not sure if this was a new Subway, or if they just weren’t used to the crowd they had for lunch that day, or if all the employees were just new. Anyway, it seemed like there was only one person working who actually knew what was going on so it took forever for us to get our sandwiches. Of course it was nap time, so poor Joe was doing his best to keep Ella from having a complete meltdown right there in the middle of the restaurant. We were both glad to get back in the car and head to Merit…by the way, Ella was asleep within a few minutes. Ella slept all through lunch, which gave Joe and I some good time to catch up with Big Mama and Big Daddy. After Ella woke up, Uncle John came by for a few minutes. We tried to sing "Uncle John Had a Farm" but Ella was being her typical shy self and didn't want to entertain a stranger. After lunch we headed to Uncle John's barn to check out his miniature horses (don't worry Beck, I don't have any pictures). They are so cute and one of them kept trying to lick Ella's foot. She wanted to get down and play with them so badly, but unfortunately she didn't have her shoes on so walking in the pasture was completely out of the question.
Thursday night the whole family came to Clay and Gail’s for a wonderful dinner! It was so much fun seeing everyone. We had a lot of fun catching up and just hanging out as a family. And Ella had a lot of fun playing with her cousin (actually I think it's her second cousin) Callie.
I can’t let this post end without giving a very special shout-out to Sadie, the dog. Sadie was the perfect dog for Ella this week. They had a love-love relationship. Ella loved that Sadie was so gentle and didn’t jump up on her or go crazy, and Sadie loved that Ella kept giving her food. It was a match made in heaven.
We had a ton of fun in Texas and I always love seeing my extended family. I wish we lived closer so that we could all hang out more.
Last Monday we flew to Dallas, TX to visit my extended family (grandparents, aunts, uncles and cousins). Ella did pretty good on the plane, but was not keen about riding in a little car. Since she’s used to the minivan, whenever we have to go somewhere in a little 4 door car she doesn’t like it. Once we put her video up for her to watch she did ok, thank goodness. We stayed with Aunt Gail and Uncle Clay in Garland. Ella was her typical shy self. She did warm up eventually, but she never fully let down her guard. We spent Monday afternoon at the house just letting Ella get acclimated to all the new stuff around her. We also went for a dip in Clay and Gail’s pool. Ella has never been a fan of swimming pools. We think it’s mainly because there are a lot of kids around splashing and going crazy, and the water is usually too cold for her. Not so in the Texas heat. The pool was like bathwater! It was so nice and warm and since there were just 4 of us around, she didn’t have to worry about other kids. She was still nervous, but she warmed up to the idea and soon she was floating by herself in the little floaties and even asking daddy to jump off the diving board. That night we went to cousin Thomas and Jessica’s house for dinner. They made a wonderful steak with all the sides. Ella loved it and just kept shoving steak in her mouth.
A little side note: Aunt Gail bought a little seat for Ella to eat in and the back was a lion. Ella is in a new lion phase so she instantly fell in love with this seat. She would ask to sit in her lion seat and as soon as I put her in it she would turn around and say "Hi Lion!" then blow the lion kisses.
Tuesday morning we relaxed around the house then headed to a Mexican food restaurant for dinner. It was SO good! I love Mexican food and my only problem with the east is that I have yet to find a great Mexican food restaurant. We’ve found some that will suffice, but nothing amazing. Ella was exhausted and slept all the way through lunch. After lunch we headed out to the farm to see Big Mama and Big Daddy. Ella warmed up very quickly once she saw the piano. She was very excited that her mommy could peck out ABC’s, Twinkle Twinkle (which is the same tune, in case you didn’t know), the Itsy Bitsy Spider and of course, Uncle John Had a Farm. We had a yummy dinner and as we were leaving she even let Big Mama give her a kiss. She must have felt the Ella bond (Big Mama is the original Ella and little Ella is named after her).
Wednesday we headed back out to the farm for lunch. We grabbed Subway sandwiches on the way. As a side note, this particular Subway needed some serious operational intervention. There is a Subway located right across the street from my office and I eat there almost every day. At lunch that place is packed, but the workers have their system down to a science. Each person is in charge of just a couple of things and they have their job down perfectly. They don’t break from their section because that’s what it takes for the system to work. In Texas, however, I’m not sure if this was a new Subway, or if they just weren’t used to the crowd they had for lunch that day, or if all the employees were just new. Anyway, it seemed like there was only one person working who actually knew what was going on so it took forever for us to get our sandwiches. Of course it was nap time, so poor Joe was doing his best to keep Ella from having a complete meltdown right there in the middle of the restaurant. We were both glad to get back in the car and head to Merit…by the way, Ella was asleep within a few minutes. Ella slept all through lunch, which gave Joe and I some good time to catch up with Big Mama and Big Daddy. After Ella woke up, Uncle John came by for a few minutes. We tried to sing "Uncle John Had a Farm" but Ella was being her typical shy self and didn't want to entertain a stranger. After lunch we headed to Uncle John's barn to check out his miniature horses (don't worry Beck, I don't have any pictures). They are so cute and one of them kept trying to lick Ella's foot. She wanted to get down and play with them so badly, but unfortunately she didn't have her shoes on so walking in the pasture was completely out of the question.
Thursday night the whole family came to Clay and Gail’s for a wonderful dinner! It was so much fun seeing everyone. We had a lot of fun catching up and just hanging out as a family. And Ella had a lot of fun playing with her cousin (actually I think it's her second cousin) Callie.
I can’t let this post end without giving a very special shout-out to Sadie, the dog. Sadie was the perfect dog for Ella this week. They had a love-love relationship. Ella loved that Sadie was so gentle and didn’t jump up on her or go crazy, and Sadie loved that Ella kept giving her food. It was a match made in heaven.
We had a ton of fun in Texas and I always love seeing my extended family. I wish we lived closer so that we could all hang out more.
Thursday, August 13, 2009
Busted!
Unfortunately our home computer is busted! Well, not completely busted, but for some reason it won’t connect to the internet. So I haven’t been able to upload any of the fabulous new videos of Stinkerella. I’ll get them up as soon as we can figure out what to do. (Here is my shameless plug for someone to help us fix our computer…for some reason it won’t connect to our network…are there any computer geniuses out there who are willing to help us out?)
In the meantime I’ll fill you in on some of Ella’s newest tricks. First…books. I started reading to Ella when she was about a week old. I would take books to the hospital and hold her and read. I think a few of the nurses thought I was nuts, but I was (and still am) adamant that reading to children at an early age helps their language development. Now, Ella loves books. She reads the same ones over and over throughout the day. And just to prove how much she reads these books, she can completely quote some of them. Last night I was reading “8 silly monkeys” to her and started reading it to me. Of course she can’t actually read (she’s a genius but she’s not that advanced…yet), but she knows exactly what to say and when to turn the page. She read the whole thing. Granted, it says the same thing on every page, “8 silly monkeys jumping on the bed. One fell off and bumped his head. Mama called the doctor and the doctor said, “No more monkeys jumping on the bed!” But the fact that she could remember it all was so fun to watch. And it's so funny how she puts in the exact same inflection that Joe and I do when we read. She is also very into reading her bible. She asks Joe to read it to her every night during her bandage change. It’s a children’s bible that our church gave us when Ella was born and on each page is a little 1-2 line prayer. With every page turn she says, “Dear God” then Joe finishes reading the prayer and Ella finishes with “Amen!” Then they talk about what is on the page. Her favorites include Noah, John, Shadrach, Meshach and Abednego, baby Jesus and of course, Jesus’ Mommy.
Ella has several new songs that we’ve been working on for our trip down south (we’re going to Texas to visit my extended family). Among her favorites are “Uncle John Had a Farm” (he has some very interesting things on his farm including a choo choo and a lion. I hope we don’t run into that lion when we’re visiting), and of course the Gooch family song, “The more we get together.” She has also recently taken an interest in “5 little ducks.”
Last night I decided to change things up a bit for Ella’s dinner, so I gave her a peanut butter and jelly sandwich (not real peanut butter but actually soynut butter…it tastes the same). She was really excited about it at first. I ran upstairs for a minute and when I came back down she had pulled the sandwich apart and had a piece of bread in each hand. She was looking at it with a very concerned face and saying “Oh No!” I went over to her and she looked at me like there was a problem and said, “Oh no, mommy!” It was obvious that she was very concerned that she had taken her sandwich apart. Unfortunately she didn’t really grasp the concept of the sandwich, so when I offered her leftover pizza she happily accepted.
Ella continues to be such a joy to us! She is so much fun and laughs and plays all the time. We are thankful every day for God blessing us with her.
In the meantime I’ll fill you in on some of Ella’s newest tricks. First…books. I started reading to Ella when she was about a week old. I would take books to the hospital and hold her and read. I think a few of the nurses thought I was nuts, but I was (and still am) adamant that reading to children at an early age helps their language development. Now, Ella loves books. She reads the same ones over and over throughout the day. And just to prove how much she reads these books, she can completely quote some of them. Last night I was reading “8 silly monkeys” to her and started reading it to me. Of course she can’t actually read (she’s a genius but she’s not that advanced…yet), but she knows exactly what to say and when to turn the page. She read the whole thing. Granted, it says the same thing on every page, “8 silly monkeys jumping on the bed. One fell off and bumped his head. Mama called the doctor and the doctor said, “No more monkeys jumping on the bed!” But the fact that she could remember it all was so fun to watch. And it's so funny how she puts in the exact same inflection that Joe and I do when we read. She is also very into reading her bible. She asks Joe to read it to her every night during her bandage change. It’s a children’s bible that our church gave us when Ella was born and on each page is a little 1-2 line prayer. With every page turn she says, “Dear God” then Joe finishes reading the prayer and Ella finishes with “Amen!” Then they talk about what is on the page. Her favorites include Noah, John, Shadrach, Meshach and Abednego, baby Jesus and of course, Jesus’ Mommy.
Ella has several new songs that we’ve been working on for our trip down south (we’re going to Texas to visit my extended family). Among her favorites are “Uncle John Had a Farm” (he has some very interesting things on his farm including a choo choo and a lion. I hope we don’t run into that lion when we’re visiting), and of course the Gooch family song, “The more we get together.” She has also recently taken an interest in “5 little ducks.”
Last night I decided to change things up a bit for Ella’s dinner, so I gave her a peanut butter and jelly sandwich (not real peanut butter but actually soynut butter…it tastes the same). She was really excited about it at first. I ran upstairs for a minute and when I came back down she had pulled the sandwich apart and had a piece of bread in each hand. She was looking at it with a very concerned face and saying “Oh No!” I went over to her and she looked at me like there was a problem and said, “Oh no, mommy!” It was obvious that she was very concerned that she had taken her sandwich apart. Unfortunately she didn’t really grasp the concept of the sandwich, so when I offered her leftover pizza she happily accepted.
Ella continues to be such a joy to us! She is so much fun and laughs and plays all the time. We are thankful every day for God blessing us with her.
Tuesday, August 11, 2009
I'm Nervous
UPDATE:
We met with Tessie last night and she was very nice. She’s originally from the Philippines and has been in American for about 5 years. I think she’s used to being in a situation where she comes in and has to tell the family what to do, so in that regard, we were different than what she had previously dealt with. She kept trying to tell us things about EB because she had seen 1 person several years ago. We tried to make it very clear that we don’t want someone to come in and take over with a whole new regime. We want someone to assist me for the time being, then gradually phase into doing Ella’s bandages alone. She did comment that Ella’s bandages were done really well, which made me feel good, however, she really understood the situation when I took her upstairs to show her our bandage changing area and specifically our supply closet. I opened the door and she gasped then said, “Oh my! It’s like a pharmacy!” I went through each product we use and explained to her what it is, how it’s used and why we use it. I even took out the roll gauze and explained to her that we only use one specific brand of gauze because it’s much softer than any other brand. She wanted to feel everything and I gave her samples to take home. We didn’t do a bandage change last night. Instead we went over everything and filled out all of her paperwork. She is coming over on Thursday to help with the bandage change from beginning to end.
While she was very nice, I’m cautiously optimistic. She was good with Ella and approached her with caution. We’ll see how things go the first couple of bandage changes and then reevaluate.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Today we have a nurse coming. The goal is to train her to do Ella’s bandages so that a couple of days a week I can have a break and so that if Joe and I ever want to go out of town together for longer than 1 night then there will be someone else who can clean Ella up. We also think it’s good practice to have someone else who knows how to wrap her in case something were to happen to Joe and me.
Since Ella came home from the hospital I have been her primary caretaker. Joe has done the bandages a few times, and several people have helped me do them, but for the most part I take care of Ella’s boo boos. I’m not a nurse and I don’t have any medical training other than what I’ve learned “on the job” as Ella’s mom…but I know one thing that no nurse will ever know…I know Ella and I know her little body. I know every boo boo, every tender spot, every space of extra fragile skin, every scar. I know exactly how to hold her hands to get the best wrap around her arm. I know exactly how to prop her foot on my tummy so that I get the best wrap around her leg. I know where to add extra gauze and where to lighten up. I even know exactly which direction to roll the gauze to get the smoothest and most even wrap without wrinkles and bunching. I just know Ella and I know how to deal with her when she’s completely naked and at her most vulnerable point. (If you talk to any EB parent, most of them will be able to say the exact same thing.)
When Ella first came home from the hospital I would lay in bed at night going over her body in my mind. I would think about each boo boo and ponder how we could better address that area. Sometimes I would think about it for hours and even draw diagrams displaying how to cut the stuff to perfectly cover the wound. Now I feel like we pretty much have things down to a rhythm, but sometimes I still spend hours thinking about how best to address a problem area. Just last night I came home with a diagram on how to cut things for an area we’re trying to address. My goal in wrapping her body is to address problem areas while reducing the occurrence of more boo boos.
On one hand I like being the primary care taker. I know that Ella’s bandages will get done the way that works best for her. On the other hand, sometimes I need a break. Sometimes, after a long day at work, or when I am sick (like right now…I have a terrible cold) I just don’t want to do the bandages. And Joe usually doesn’t get home from school until 9:30 or later and by then we’re all tired and doing the bandages is not a pleasant experience.
We decided several weeks ago that we were going to bring someone else in to train to do Ella’s bandages. This person will only come in 2 days a week, but will be able to either do them completely on their own, or help me do them right when I get home from work so that we don’t have to wait until 10pm. Joe did all the leg work and found a company that our insurance will accept, and even called the company to schedule the nurse. So tonight at 7 pm the nurse is coming in.
We’ve had dozens of conversations on what type of nurse to get. Sometimes we think it would be better to have an older, more experienced nurse who has been in the field for awhile. Other times we think it would be better to have a young new nurse who doesn’t come in with the attitude that she knows all the answers to Ella’s wound care needs. The nursing company has a nurse who has worked in wound care for years and she is going to come help tonight. Honestly, I wish I was more excited. We talked to her on the phone last night and the positive side is that she has heard of EB and has even worked with EB patients before. The negative side is that within minutes she was telling us over the phone what kind of things we should be using on Ella. I don’t want a nurse to change things…I want a nurse to come in and do things the way we’re doing them. If she has suggestions that’s great and I’ll listen to them, but I don’t have time to deal with someone who thinks they can do things better than we’ve been doing them for 2 years.
We’ll see how it goes tonight and if it doesn’t go well we’ll move on to the next nurse. Please keep us in your prayers tonight at 7:00 pm. I’m nervous. Nervous to train someone else. Nervous to potentially leave Ella’s care in someone else’s hands. Nervous that Ella will get more boo boos than is necessary. Nervous that this nurse isn’t going to listen and I’m going to have to show her who the mom is. I’m just nervous about it all.
We met with Tessie last night and she was very nice. She’s originally from the Philippines and has been in American for about 5 years. I think she’s used to being in a situation where she comes in and has to tell the family what to do, so in that regard, we were different than what she had previously dealt with. She kept trying to tell us things about EB because she had seen 1 person several years ago. We tried to make it very clear that we don’t want someone to come in and take over with a whole new regime. We want someone to assist me for the time being, then gradually phase into doing Ella’s bandages alone. She did comment that Ella’s bandages were done really well, which made me feel good, however, she really understood the situation when I took her upstairs to show her our bandage changing area and specifically our supply closet. I opened the door and she gasped then said, “Oh my! It’s like a pharmacy!” I went through each product we use and explained to her what it is, how it’s used and why we use it. I even took out the roll gauze and explained to her that we only use one specific brand of gauze because it’s much softer than any other brand. She wanted to feel everything and I gave her samples to take home. We didn’t do a bandage change last night. Instead we went over everything and filled out all of her paperwork. She is coming over on Thursday to help with the bandage change from beginning to end.
While she was very nice, I’m cautiously optimistic. She was good with Ella and approached her with caution. We’ll see how things go the first couple of bandage changes and then reevaluate.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Today we have a nurse coming. The goal is to train her to do Ella’s bandages so that a couple of days a week I can have a break and so that if Joe and I ever want to go out of town together for longer than 1 night then there will be someone else who can clean Ella up. We also think it’s good practice to have someone else who knows how to wrap her in case something were to happen to Joe and me.
Since Ella came home from the hospital I have been her primary caretaker. Joe has done the bandages a few times, and several people have helped me do them, but for the most part I take care of Ella’s boo boos. I’m not a nurse and I don’t have any medical training other than what I’ve learned “on the job” as Ella’s mom…but I know one thing that no nurse will ever know…I know Ella and I know her little body. I know every boo boo, every tender spot, every space of extra fragile skin, every scar. I know exactly how to hold her hands to get the best wrap around her arm. I know exactly how to prop her foot on my tummy so that I get the best wrap around her leg. I know where to add extra gauze and where to lighten up. I even know exactly which direction to roll the gauze to get the smoothest and most even wrap without wrinkles and bunching. I just know Ella and I know how to deal with her when she’s completely naked and at her most vulnerable point. (If you talk to any EB parent, most of them will be able to say the exact same thing.)
When Ella first came home from the hospital I would lay in bed at night going over her body in my mind. I would think about each boo boo and ponder how we could better address that area. Sometimes I would think about it for hours and even draw diagrams displaying how to cut the stuff to perfectly cover the wound. Now I feel like we pretty much have things down to a rhythm, but sometimes I still spend hours thinking about how best to address a problem area. Just last night I came home with a diagram on how to cut things for an area we’re trying to address. My goal in wrapping her body is to address problem areas while reducing the occurrence of more boo boos.
On one hand I like being the primary care taker. I know that Ella’s bandages will get done the way that works best for her. On the other hand, sometimes I need a break. Sometimes, after a long day at work, or when I am sick (like right now…I have a terrible cold) I just don’t want to do the bandages. And Joe usually doesn’t get home from school until 9:30 or later and by then we’re all tired and doing the bandages is not a pleasant experience.
We decided several weeks ago that we were going to bring someone else in to train to do Ella’s bandages. This person will only come in 2 days a week, but will be able to either do them completely on their own, or help me do them right when I get home from work so that we don’t have to wait until 10pm. Joe did all the leg work and found a company that our insurance will accept, and even called the company to schedule the nurse. So tonight at 7 pm the nurse is coming in.
We’ve had dozens of conversations on what type of nurse to get. Sometimes we think it would be better to have an older, more experienced nurse who has been in the field for awhile. Other times we think it would be better to have a young new nurse who doesn’t come in with the attitude that she knows all the answers to Ella’s wound care needs. The nursing company has a nurse who has worked in wound care for years and she is going to come help tonight. Honestly, I wish I was more excited. We talked to her on the phone last night and the positive side is that she has heard of EB and has even worked with EB patients before. The negative side is that within minutes she was telling us over the phone what kind of things we should be using on Ella. I don’t want a nurse to change things…I want a nurse to come in and do things the way we’re doing them. If she has suggestions that’s great and I’ll listen to them, but I don’t have time to deal with someone who thinks they can do things better than we’ve been doing them for 2 years.
We’ll see how it goes tonight and if it doesn’t go well we’ll move on to the next nurse. Please keep us in your prayers tonight at 7:00 pm. I’m nervous. Nervous to train someone else. Nervous to potentially leave Ella’s care in someone else’s hands. Nervous that Ella will get more boo boos than is necessary. Nervous that this nurse isn’t going to listen and I’m going to have to show her who the mom is. I’m just nervous about it all.
Sunday, August 9, 2009
Happy Anniversary
Our anniversary started off like any other day. We woke up, said the typical, “Happy Anniversary” and went about getting ready for our day. I had a meeting in downtown DC at 10:30, so I started heading that way. Thankfully I stopped at Starbuck’s on my way and got a nice big cup of tea (sorry, I don’t drink coffee…I hear it makes you grow hair on your chest and I DEFINITELY don’t want that!) I headed into DC and right as I crossed over the 14th street bridge it felt like I was driving over a bunch of potholes. Right after I heard a thud…thud…thud from my tire. I just knew I had a flat, so I pulled over onto a side street and checked out the situation. No, no flat, so I got back in my car and headed to my meeting.
The thud, thud, thud got louder and of course now I was in the middle of downtown DC where there was no where to pull over and check things out...and let me add that it was also raining. Anyone from around here knows that in downtown DC at 10 am there is no where to park…even most of the parking garages are full, and there is definitely no where to pull over and check out your tire. God was watching over me and I looked up and saw the perfect meter parking space. I didn’t even have to parallel park, I could just pull right in (please allow me to note that I CAN parallel park and I am pretty good at it, if I do say so myself, but I was not excited to attempt parallel parking with a flat tire.) Of course my tire was as flat as a pancake, so I did the first thing I thought of, I called Joe. Luckily our insurance has roadside assistance, so I was able to get things squared away for a tow truck to come and get my car. Joe, being the wonderful husband that he is, came to where I was and traded cars with me. So I went to work (I had already missed my meeting) and Joe camped out at Starbuck’s until the tow truck came. As soon as Joe arrived I looked at him and said, “Happy Anniversary Honey!” Then we both started laughing.
So, for our anniversary Joe bought me 4 brand spankin' new tires…one for each wonderful year we’ve been married. The other tires had been on my car for about 5 years, and we don’t just drive my car…we DRIVE my car (this is where I put a plug in for Toyota…I love my car…his name is Duane). I guess it was about time for new tires.
After work I came home and decided to make Chicken Madeira. A friend had given us some Madeira wine and suggested this dish, so I thought I’d give it a shot. Thanks to everyone for the food suggestions. (I have to give a little shout-out to Leslie, who suggested beef stroganoff. I LOVE beef stroganoff…in fact, I made it for dinner on Tuesday, otherwise that would have been a great dish to make. I’ll definitely give your recipe a try.) The dinner was good and that was pretty much it for our day. Not too exciting.
Friday night, however, was when we really celebrated our anniversary. For the first time in her 2 years of life, both Joe and I left Ella overnight with Metti. There have been times that I’ve been gone and Joe’s stayed home with her, and there have been times that Joe’s been gone and I’ve stayed home with her, but never have both of us been gone at the same time! Joe rented us a hotel room at the Aloft hotel at the National Harbor. It was close enough that we could come home quickly if something happened, but far enough away that we could have a night to ourselves. We went to dinner at Rosa Mexicano then walked around by the water and checked out the Gaylord Hotel (loved the water fountain show), then finished off with a visit to Cake Love. After we got our cupcakes we went back to the hotel and watched a movie…a current movie (at least current for us)…a movie that didn’t have Elmo, Blues Clues, Dora or any other animated character. In fact, we watched 2 movies, “I Love You, Man” and “Slumdog Millionaire.” Both were great!
Saturday morning we woke up, grabbed a quick breakfast and headed home. It was really nice being away for a night. We missed Ella and I was really sad not to kss those cheeks before bed, but it was nice to get away. Metti said that Ella was great and didn’t even ask for us (I kind of wish she had lied about that). When we walked in Ella was so cute and excited to see us.
It was a great anniversary. I still can’t believe that God chose to give me Joe. He’s a wonderful husband who works so hard and takes great care of his girls. We love him so much and thank God every day for him.
The thud, thud, thud got louder and of course now I was in the middle of downtown DC where there was no where to pull over and check things out...and let me add that it was also raining. Anyone from around here knows that in downtown DC at 10 am there is no where to park…even most of the parking garages are full, and there is definitely no where to pull over and check out your tire. God was watching over me and I looked up and saw the perfect meter parking space. I didn’t even have to parallel park, I could just pull right in (please allow me to note that I CAN parallel park and I am pretty good at it, if I do say so myself, but I was not excited to attempt parallel parking with a flat tire.) Of course my tire was as flat as a pancake, so I did the first thing I thought of, I called Joe. Luckily our insurance has roadside assistance, so I was able to get things squared away for a tow truck to come and get my car. Joe, being the wonderful husband that he is, came to where I was and traded cars with me. So I went to work (I had already missed my meeting) and Joe camped out at Starbuck’s until the tow truck came. As soon as Joe arrived I looked at him and said, “Happy Anniversary Honey!” Then we both started laughing.
So, for our anniversary Joe bought me 4 brand spankin' new tires…one for each wonderful year we’ve been married. The other tires had been on my car for about 5 years, and we don’t just drive my car…we DRIVE my car (this is where I put a plug in for Toyota…I love my car…his name is Duane). I guess it was about time for new tires.
After work I came home and decided to make Chicken Madeira. A friend had given us some Madeira wine and suggested this dish, so I thought I’d give it a shot. Thanks to everyone for the food suggestions. (I have to give a little shout-out to Leslie, who suggested beef stroganoff. I LOVE beef stroganoff…in fact, I made it for dinner on Tuesday, otherwise that would have been a great dish to make. I’ll definitely give your recipe a try.) The dinner was good and that was pretty much it for our day. Not too exciting.
Friday night, however, was when we really celebrated our anniversary. For the first time in her 2 years of life, both Joe and I left Ella overnight with Metti. There have been times that I’ve been gone and Joe’s stayed home with her, and there have been times that Joe’s been gone and I’ve stayed home with her, but never have both of us been gone at the same time! Joe rented us a hotel room at the Aloft hotel at the National Harbor. It was close enough that we could come home quickly if something happened, but far enough away that we could have a night to ourselves. We went to dinner at Rosa Mexicano then walked around by the water and checked out the Gaylord Hotel (loved the water fountain show), then finished off with a visit to Cake Love. After we got our cupcakes we went back to the hotel and watched a movie…a current movie (at least current for us)…a movie that didn’t have Elmo, Blues Clues, Dora or any other animated character. In fact, we watched 2 movies, “I Love You, Man” and “Slumdog Millionaire.” Both were great!
Saturday morning we woke up, grabbed a quick breakfast and headed home. It was really nice being away for a night. We missed Ella and I was really sad not to kss those cheeks before bed, but it was nice to get away. Metti said that Ella was great and didn’t even ask for us (I kind of wish she had lied about that). When we walked in Ella was so cute and excited to see us.
It was a great anniversary. I still can’t believe that God chose to give me Joe. He’s a wonderful husband who works so hard and takes great care of his girls. We love him so much and thank God every day for him.
Wednesday, August 5, 2009
Chef Katie?
Ok, so here’s my true confession…which will totally not be a shock to those of you who have known me for a while. Before I met Joe I couldn’t cook. I could make Mac and Cheese, and bake a chicken breast for myself, and I could serve up a mean spaghetti (with jarred spaghetti sauce…of course), but other than that my cooking skills were lacking.
Not only did I marry a man who likes to eat, but he also came from a family who had a mom who loves to cook and makes wonderfully elaborate meals. I was a bit intimidated. So I decided that I was going to learn to cook. So in my lack of cooking experience, when we got married I just kind of added cooking equipment to the registry. Mostly it was things that I’d heard other people used or things I had seen in other peoples kitchens. Among those things was this little beauty.
More true confessions…the only reason I registered for it was because it matched the red KitchenAid mixer and red KitchenAid blender that I had also registered for.
Not only did I marry a man who likes to eat, but he also came from a family who had a mom who loves to cook and makes wonderfully elaborate meals. I was a bit intimidated. So I decided that I was going to learn to cook. So in my lack of cooking experience, when we got married I just kind of added cooking equipment to the registry. Mostly it was things that I’d heard other people used or things I had seen in other peoples kitchens. Among those things was this little beauty.
More true confessions…the only reason I registered for it was because it matched the red KitchenAid mixer and red KitchenAid blender that I had also registered for.
Isn’t it cute! Anyway, now that I’m 4 years into the cooking thing, I think I do pretty good job at holding my own. I can’t make up recipes, and I don’t look at what’s in my pantry and think “Wow, I bet that would taste great together!” And I definitely can’t do that type of cooking where you add some of this and a pinch of that. But, I can follow a recipe. If things are laid out in front of me and I am told how much to add, how long to cook, when to stir and when not to stir, then I’m good to go.
And in my vast cooking experience, I have grown to love this little mini prep more than any other item in my kitchen. I don’t like chopping, especially when things need to be chopped into teeny tiny little pieces…it makes my hands gross and takes up too much time. Especially onions…gross! So with this little beauty all I have to do is throw in some chunks of whatever I need chopped and press the button.
Within seconds I have gone from this:
To this:
Voila!
Voila!So now is the time where I ask for audience participation. I REALLY need your help! Tomorrow Joe and I celebrate our 4 year anniversary. Sure, it’s not as exciting as 5 years, but it’s definitely more exciting than 3! So for dinner tomorrow night I want to make something special and I need your help! What can I make that easy but will come across like I slaved all day? We are celebrating this weekend, but I want to make something special for our real anniversary. Please keep in mind that I work a full time job and that when I come home I have to juggle cooking with taking care of a 2 year old. Any and all suggestions will be greatly appreciated. Thank you!
Monday, August 3, 2009
A Trip to the Garden State
We just got back from NJ where we were able to visit most of Joe’s family. This was Ella’s first visit to Grammy’s house. Janet started renting her house out right when Ella was born, so we never got to stay there when we went for a visit. She is now in the process of trying to sell her house, but we all got to pile in and hang out for a few days.
As I’ve mentioned before, Joe is one of 8 kids, so when everyone gets together there are nearly 30 people. Not everyone was there this weekend, but we did get to see much of the family. On Friday night it was just us and Grammy. Ella pulled out all the stops and showed Grammy that she really is a genius. Her favorite game was sitting on the pool table and Grammy had all the pool balls at the other end. Ella would tell Grammy what color she wanted, then Grammy held up the ball so that Ella could see the number. Ella would then say, “What number is that? 7. Good girl. SMART!” Yes, she would ask herself the question, tell herself the answer, then compliment herself on doing a good job. She played this game the entire weekend and was more than willing to show off to her cousins and aunts and uncles. I think she liked the laughter and cheers she received.
Saturday we ran errands. The first, and most important, was to visit Grammy’s friend who is currently training a puppy to be an assistance dog for people who are blind. This puppy is just a few weeks old and is so sweet! We then went to lunch at a Jersey shore favorite, Harrigan’s. I was really craving some fish and chips, but unfortunately it’s only on their dinner menu. Our waitress cashed in a favor with the chef and he made me a special lunch batch of fish and chips! After lunch Ella was pretty tuckered out, so she fell asleep in the car while we ran to the grocery store.
That afternoon Joe’s only brother, Billy, and his family came, as well as Joe’s sister, Katie (awesome name) and her husband. It took Ella some time to adjust, but eventually she was fine and did her pool table game for everyone. The adults all went out for the evening, so Ella and I stayed with Grammy and Billy’s kids, Julia and Nick. Ella absolutely loved watching Julia and Nick play and dance. I have so many pictures that I will post soon, but just know that she was having a great time. Julia and Nick had a competition for who could stand on one foot the longest. Julia won and every time Nick would fall Ella would say, “Oh No Nick!” Later they put on a show for us and sang a Black Eyed Peas song while Ella danced in the middle of the living room. Julia and Nick even went and got their doggies (yes, they each have doggies that they sleep with…Julia’s is named Molly and Nick’s is named Doggie, just like Ella’s. Only Nick’s is the boy doggie and Ella’s is the girl doggie…please DO NOT get them confused) and they had a lot of fun throwing them up so that they hit the ceiling. Ella would even grab doggie and hold her over her head then bring her down and grab her just like they did. Julia read books to Ella and they all played with this ball toy and this other car toy. We even sang some of Ella's favorite songs. Julia even taught me to Pictochat on my DS and apparently if we have the same game them we can play against each other. The best part of the night came when Ella was playing in the side bedroom and Nick went over to her, leaned down and gently kissed her cheek. It was so sweet!
The rest of the Murray clan arrived on Sunday to celebrate Jenny’s birthday. I love the Murray’s and I love being a part of their family, but one thing about the Murray’s that everyone should know…they can be rather loud. And the more people that arrive, the louder things get. Unfortunately I couldn’t fully explain this to Ella, so she was very overwhelmed with the whole thing. Every time someone new would walk in the door she would burst into tears. The only time she didn’t was when Jenny and Danny came and brought Zoe, their dog. This was enough distraction to keep Ella from crying. Ella got to see 8 aunts and uncles and 7 cousins. Once she got over the initial shock of all the people, she was fine and read books, played with Zoe and watched all the uncles and boy cousins play whiffleball outside.
We headed home Sunday afternoon. I am still completely stuffed from the weekend. I feel like the moment we arrive until the second we leave we are constantly putting food in our mouths and it takes days to recover. Ella did great on the drive both up and back. She slept most of the time both ways, and then watched her videos. We had a great trip and it was so much fun seeing the family.
As I’ve mentioned before, Joe is one of 8 kids, so when everyone gets together there are nearly 30 people. Not everyone was there this weekend, but we did get to see much of the family. On Friday night it was just us and Grammy. Ella pulled out all the stops and showed Grammy that she really is a genius. Her favorite game was sitting on the pool table and Grammy had all the pool balls at the other end. Ella would tell Grammy what color she wanted, then Grammy held up the ball so that Ella could see the number. Ella would then say, “What number is that? 7. Good girl. SMART!” Yes, she would ask herself the question, tell herself the answer, then compliment herself on doing a good job. She played this game the entire weekend and was more than willing to show off to her cousins and aunts and uncles. I think she liked the laughter and cheers she received.
Saturday we ran errands. The first, and most important, was to visit Grammy’s friend who is currently training a puppy to be an assistance dog for people who are blind. This puppy is just a few weeks old and is so sweet! We then went to lunch at a Jersey shore favorite, Harrigan’s. I was really craving some fish and chips, but unfortunately it’s only on their dinner menu. Our waitress cashed in a favor with the chef and he made me a special lunch batch of fish and chips! After lunch Ella was pretty tuckered out, so she fell asleep in the car while we ran to the grocery store.
That afternoon Joe’s only brother, Billy, and his family came, as well as Joe’s sister, Katie (awesome name) and her husband. It took Ella some time to adjust, but eventually she was fine and did her pool table game for everyone. The adults all went out for the evening, so Ella and I stayed with Grammy and Billy’s kids, Julia and Nick. Ella absolutely loved watching Julia and Nick play and dance. I have so many pictures that I will post soon, but just know that she was having a great time. Julia and Nick had a competition for who could stand on one foot the longest. Julia won and every time Nick would fall Ella would say, “Oh No Nick!” Later they put on a show for us and sang a Black Eyed Peas song while Ella danced in the middle of the living room. Julia and Nick even went and got their doggies (yes, they each have doggies that they sleep with…Julia’s is named Molly and Nick’s is named Doggie, just like Ella’s. Only Nick’s is the boy doggie and Ella’s is the girl doggie…please DO NOT get them confused) and they had a lot of fun throwing them up so that they hit the ceiling. Ella would even grab doggie and hold her over her head then bring her down and grab her just like they did. Julia read books to Ella and they all played with this ball toy and this other car toy. We even sang some of Ella's favorite songs. Julia even taught me to Pictochat on my DS and apparently if we have the same game them we can play against each other. The best part of the night came when Ella was playing in the side bedroom and Nick went over to her, leaned down and gently kissed her cheek. It was so sweet!
The rest of the Murray clan arrived on Sunday to celebrate Jenny’s birthday. I love the Murray’s and I love being a part of their family, but one thing about the Murray’s that everyone should know…they can be rather loud. And the more people that arrive, the louder things get. Unfortunately I couldn’t fully explain this to Ella, so she was very overwhelmed with the whole thing. Every time someone new would walk in the door she would burst into tears. The only time she didn’t was when Jenny and Danny came and brought Zoe, their dog. This was enough distraction to keep Ella from crying. Ella got to see 8 aunts and uncles and 7 cousins. Once she got over the initial shock of all the people, she was fine and read books, played with Zoe and watched all the uncles and boy cousins play whiffleball outside.
We headed home Sunday afternoon. I am still completely stuffed from the weekend. I feel like the moment we arrive until the second we leave we are constantly putting food in our mouths and it takes days to recover. Ella did great on the drive both up and back. She slept most of the time both ways, and then watched her videos. We had a great trip and it was so much fun seeing the family.
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