Ella went to the doctor this morning and here is the update. She weighs 18lbs 8oz (we are convinced that the scale is wrong) and she is 29 1/2 inches long (she has grown 2 inches). The doctor is pleased with how she is doing, and so are we. Unfortunately she also got 2 shots. Poor girl.
GiGi and Paw Paw headed back to Wyoming today. Ella had so much fun climbing on them and reading books. And she is especially thankful for her new doggie. Grammy Janet went back on Sunday with Aunt Trish. Ella will miss Grammy singing the "Hi Diddle Diddle" song and the "Meezla Mizla" game. It was fun having so much family in town to celebrate with Ella. We can't wait for everyone to come back!
Our sweet baby girl was born with a rare skin disease called Epidermolysis Bullosa. On the day she was born our lives changed forever. Through her life God has shown us his power, comfort and healing hand. We are blessed to be Ella's parents and can't wait to see what God has in store for her life.
Tuesday, June 24, 2008
Saturday, June 21, 2008
Happy Birthday!!!
Wow…1 year! I can hardly believe it. To say that this year has been a roller coaster would be an understatement. Ella was born at 1:03 pm, and around 3:00pm we were informed that she had this skin disease. I think we had to have the doctor repeat the name a dozen times before we wrote it down to remember. Unfortunately we were also informed that her chance of survival was slim. Hard news to hear after you’ve just delivered your first baby. At around 4:00pm she was brought into my room in a travel incubator…this was my chance to see her for the first time. I got to look at her long enough for Joe to sign the release papers sending her to Children’s National Hospital in Washington, DC. Then she was off.
I had 3 prayers. 1) That I would get to see her (I couldn’t remember what she looked like from our one encounter because I was on drugs from my cesarean). 2) That I would get to hold her. And 3) that she wouldn’t live a life of pain. As much as I wanted her here with us, I didn’t want her to suffer, so if that meant Christ taking her home with Him then I was ok with that. Now, a year later, I see that God has answered all of those prayers. I get to look at that beautiful face every day and kiss those chunky cheeks. I get to hold and squeeze our precious baby as much as I want to. And Ella doesn’t act like she is in pain. There are times a boo boo will hurt a bit more than usual, and those pesky mouth blisters cause pain. But she doesn’t live in constant pain all the time. Or at least if she does, she doesn’t act like it (I guess we’ll never really know).
God is merciful. We have learned that! And he really doesn’t give us anything we can’t handle, even though we think we can’t handle it. Don’t get me wrong, I have had some serious conversations with God over the past year. I have been confused, sad and angry. But in the end it all comes back to one thing. It’s not my job to understand…my job is to be the best mom that I can be and to love Ella and raise her to know God’s love and how He has chosen to use her as an example of His power.
We celebrated Ella’s birthday surrounded by family and friends. At her party there were a lot of laughs, and a few tears, but mostly it was like any other 1 year birthday party. We had screaming kids, parents chasing after their kids, crying babies, parents trying to soothe their babies, and one very overwhelmed little girl. We didn’t know how Ella was going to handle her birthday. There were a lot of people and she is in the phase where she knows who she knows…and she knows who she doesn’t know. She did great! Yes she was shy, and yes she had a couple of melt-downs. But for the most part she put on a great show. She even danced when everyone sang Happy Birthday to her. It was a great time! It was a celebration of Ella’s life!
Ella’s Life Verse:
John 10:10
Jesus said, “…I have come that you may have life, and have it to the full.”
I had 3 prayers. 1) That I would get to see her (I couldn’t remember what she looked like from our one encounter because I was on drugs from my cesarean). 2) That I would get to hold her. And 3) that she wouldn’t live a life of pain. As much as I wanted her here with us, I didn’t want her to suffer, so if that meant Christ taking her home with Him then I was ok with that. Now, a year later, I see that God has answered all of those prayers. I get to look at that beautiful face every day and kiss those chunky cheeks. I get to hold and squeeze our precious baby as much as I want to. And Ella doesn’t act like she is in pain. There are times a boo boo will hurt a bit more than usual, and those pesky mouth blisters cause pain. But she doesn’t live in constant pain all the time. Or at least if she does, she doesn’t act like it (I guess we’ll never really know).
God is merciful. We have learned that! And he really doesn’t give us anything we can’t handle, even though we think we can’t handle it. Don’t get me wrong, I have had some serious conversations with God over the past year. I have been confused, sad and angry. But in the end it all comes back to one thing. It’s not my job to understand…my job is to be the best mom that I can be and to love Ella and raise her to know God’s love and how He has chosen to use her as an example of His power.
We celebrated Ella’s birthday surrounded by family and friends. At her party there were a lot of laughs, and a few tears, but mostly it was like any other 1 year birthday party. We had screaming kids, parents chasing after their kids, crying babies, parents trying to soothe their babies, and one very overwhelmed little girl. We didn’t know how Ella was going to handle her birthday. There were a lot of people and she is in the phase where she knows who she knows…and she knows who she doesn’t know. She did great! Yes she was shy, and yes she had a couple of melt-downs. But for the most part she put on a great show. She even danced when everyone sang Happy Birthday to her. It was a great time! It was a celebration of Ella’s life!
Ella’s Life Verse:
John 10:10
Jesus said, “…I have come that you may have life, and have it to the full.”
Wednesday, June 18, 2008
Lights Out!
After another storm Monday afternoon, the power went out again at home…and at my office. Of course I was on a conference call when the lights went out, so I was sitting at my desk in the dark (even the generator went out so we didn’t have emergency lighting) and I was taking notes by the light of my blackberry. Of course this meant that the hall and stairwell were pitch black and rather eerie, so 10 of us formed a line with our cell phones/blackberries and walked down the stairs together…all 5 flights. Luckily the power at our house came back on in the middle of the night, but my office remained without electricity for a total of 19 hours, resulting in a non-snow closure Tuesday. When I returned today I was very happy to see that my ice cream dibs were still in tact and edible.
The office closure meant that I was able to stay home and play with Dancerella. I also got to spend some quality time at the mall and grocery store before picking my parents up from the airport.
GiGi and Paw Paw arrived Tuesday afternoon and of course Ella was very shy in seeing them again. It has been awhile so she didn’t remember them and just buried her head into my chest for the first several minutes. Finally Paw Paw showed her a special present that perked her up and opened the door for some quality play time. All the way from Wyoming GiGi and Paw Paw brought Ella a stuffed dog. She loves her new doggie and for the rest of the night she would hug and kiss her dog and kept saying “doggie” and “woof” over and over again. Needless to say she is very into doggies. She even slept in her special pink doggie jams.
Once Ella warmed up to GiGi and Paw Paw she was fine. She would play peek-a-boo with Paw Paw and read her doggie book with GiGi. She showed them how she is the master crawler and how she can pull herself up on all the furniture. Paw Paw had a good time singing songs to Ella and playing them on her xylophone. And she even said bye-bye when they left for the night. I think all parties involved had a good time.
Tonight Grammy Janet arrives. We’ll go through the same shyness, but soon Ella will warm up and show Grammy her doggie.
The office closure meant that I was able to stay home and play with Dancerella. I also got to spend some quality time at the mall and grocery store before picking my parents up from the airport.
GiGi and Paw Paw arrived Tuesday afternoon and of course Ella was very shy in seeing them again. It has been awhile so she didn’t remember them and just buried her head into my chest for the first several minutes. Finally Paw Paw showed her a special present that perked her up and opened the door for some quality play time. All the way from Wyoming GiGi and Paw Paw brought Ella a stuffed dog. She loves her new doggie and for the rest of the night she would hug and kiss her dog and kept saying “doggie” and “woof” over and over again. Needless to say she is very into doggies. She even slept in her special pink doggie jams.
Once Ella warmed up to GiGi and Paw Paw she was fine. She would play peek-a-boo with Paw Paw and read her doggie book with GiGi. She showed them how she is the master crawler and how she can pull herself up on all the furniture. Paw Paw had a good time singing songs to Ella and playing them on her xylophone. And she even said bye-bye when they left for the night. I think all parties involved had a good time.
Tonight Grammy Janet arrives. We’ll go through the same shyness, but soon Ella will warm up and show Grammy her doggie.
Sunday, June 15, 2008
Happy Father's Day!
I hope all you dad's out there in blogland had a terrific day! For Joe's first Father's Day we went shopping yesterday afternoon and bought him some new suits for his internships this summer and next semester. I also insisted that he get new socks and a new belt. So he is looking rather dapper in his new gear. Then this morning Ella gave him some nice wooden hangers to put his new clothes on. I know, it sounds pretty cheesy. But wooden hangers are a nice thing to have. And these ones have the special pant clip thing on them so that his pants won't fall off the hanger.
Church this morning was a joint service with Alfred Street Baptist Church in Alexandria. The service was beautiful! People from every race and background all coming together. Their gospel choir joined our choir, and they even got a few of those Southern Baptist's to sway and clap! Way to go Alfred Street! At the service we attended Rev. Dr. Howard-John Wesley, the pastor at Alfred Street, preached. Joe and I love Pastor Don. He is an incredible preacher and we always get a lot out of his messages. But Rev. Wesley preached a great sermon he had people shouting "Amen" all over that room!
This afternoon Joe got a special Father's Day nap while I played with Ella downstairs. And the day was completed with a long walk around the neighborhood. Ella loves getting outside, and she is always on the lookout for doggies. Yesterday she got to play with 2 dogs and she cried when her daddy took her away. Tonight we didn't see any dogs, but she kept looking for them.
On Tuesday GiGi and Paw Paw come into town for Ella's birthday. And on Wednesday Grammy Janet returns. We are excited to have all the grandparents back in Virginia.
Church this morning was a joint service with Alfred Street Baptist Church in Alexandria. The service was beautiful! People from every race and background all coming together. Their gospel choir joined our choir, and they even got a few of those Southern Baptist's to sway and clap! Way to go Alfred Street! At the service we attended Rev. Dr. Howard-John Wesley, the pastor at Alfred Street, preached. Joe and I love Pastor Don. He is an incredible preacher and we always get a lot out of his messages. But Rev. Wesley preached a great sermon he had people shouting "Amen" all over that room!
This afternoon Joe got a special Father's Day nap while I played with Ella downstairs. And the day was completed with a long walk around the neighborhood. Ella loves getting outside, and she is always on the lookout for doggies. Yesterday she got to play with 2 dogs and she cried when her daddy took her away. Tonight we didn't see any dogs, but she kept looking for them.
On Tuesday GiGi and Paw Paw come into town for Ella's birthday. And on Wednesday Grammy Janet returns. We are excited to have all the grandparents back in Virginia.
Wednesday, June 11, 2008
Hi!
Nothing new to report. I just figured I would write a quick note to let all you in blogland know that we haven't forgotten you. After 4 days of 100+ degree heat, the weather finally broke last night and today was much cooler. The best part is that the humidity is down, so we can actually go outside and breathe normal air. It no longer feels like a blanket of air.
There are few new pictures and videos in the June 2008 folder. Take special note of the Wyoming Cowboys onesie. I may have left Wyoming several years ago, but as I tell Joe, my heart will always be in the west. I am pleased to have her wearing the brown and gold (even though I didn't go to UW).
Ella's vocabulary is growing more and more, and she never ceases to amaze us with her new tricks. She is such a joy to have in our lives.
There are few new pictures and videos in the June 2008 folder. Take special note of the Wyoming Cowboys onesie. I may have left Wyoming several years ago, but as I tell Joe, my heart will always be in the west. I am pleased to have her wearing the brown and gold (even though I didn't go to UW).
Ella's vocabulary is growing more and more, and she never ceases to amaze us with her new tricks. She is such a joy to have in our lives.
Saturday, June 7, 2008
Heat Wave
It's hot here in Alexandria. The temperature is around 87, but according to the Weather Channel it feels like 99. Add a nice bit of humidity to that and you've got some pretty cruddy weather. And of course when we woke up this morning it was hotter than tar in our townhouse, which could only mean one thing...the air conditioner had gone out. For anyone else this would be an inconvenience. For Ella this means the potential for big skin issues. So we called the main office to get our AC repaired. Luckily the girl in the office knows Joe and definitely knows Ella and her skin, so she personally called the repair guy and told him to move us up to next on their list. Thank you to Brookville Townhomes for hooking us up. Now Ella is much more comfortable. Until the AC was fixed she was a hot and cranky baby. Now she is sleeping peacefully.
This afternoon we are taking Ella swimming. Alexandria has a great indoor pool facility, so we are excited to get Ella cooled off in the water. She even has a new teal swim suit (she out grew her red cherry one unfortunately). Ella has also outgrown her baby car seat! Its time to upgrade to the new big girl one.
I couldn't let this week pass without saying a few words of rememberance for my former boss, Senator Craig Thomas. CT (as we all called him) passed away 1 year ago Wednesday. I had the pleasure of knowing and working for him for 4 1/2 years. I still miss him. He was an incredible man who was a true Wyoming cowboy and an advocate for the people of his home state. My favorite was when CT would hand me a book about 500 pages thick and ask for a 1 page memo. Of course that was always followed by a laugh. CT knew that living in DC was a novelty for all of us kids from Wyoming, so he would do all he could to give us the best experience possible. For me that included sneaking me and 2 other staffers in to a members only briefing so that we could meet U2 front man Bono (I have the picture to prove it). He also specially arranged a tour of the capitol dome for his staff. The key to this is that the only way someone can go on the dome tour is if the member goes with them, so he climbed up all 365 steps (I think that's how many there are) just so we could see the magnificent view from the top of the dome. He also personally took me and 3 other staffers to meet Lance Armstrong, and even took me and one other staffer to meet my mom's favorite, Pat Boone. And I have to mention that for the 4 1/2 years I worked for him, every single time we went anywhere together he opened my door and let me walk through first. A true Wyoming gentleman! I miss him every day!
This afternoon we are taking Ella swimming. Alexandria has a great indoor pool facility, so we are excited to get Ella cooled off in the water. She even has a new teal swim suit (she out grew her red cherry one unfortunately). Ella has also outgrown her baby car seat! Its time to upgrade to the new big girl one.
I couldn't let this week pass without saying a few words of rememberance for my former boss, Senator Craig Thomas. CT (as we all called him) passed away 1 year ago Wednesday. I had the pleasure of knowing and working for him for 4 1/2 years. I still miss him. He was an incredible man who was a true Wyoming cowboy and an advocate for the people of his home state. My favorite was when CT would hand me a book about 500 pages thick and ask for a 1 page memo. Of course that was always followed by a laugh. CT knew that living in DC was a novelty for all of us kids from Wyoming, so he would do all he could to give us the best experience possible. For me that included sneaking me and 2 other staffers in to a members only briefing so that we could meet U2 front man Bono (I have the picture to prove it). He also specially arranged a tour of the capitol dome for his staff. The key to this is that the only way someone can go on the dome tour is if the member goes with them, so he climbed up all 365 steps (I think that's how many there are) just so we could see the magnificent view from the top of the dome. He also personally took me and 3 other staffers to meet Lance Armstrong, and even took me and one other staffer to meet my mom's favorite, Pat Boone. And I have to mention that for the 4 1/2 years I worked for him, every single time we went anywhere together he opened my door and let me walk through first. A true Wyoming gentleman! I miss him every day!
Monday, June 2, 2008
Uh Oh
Yesterday afternoon Ella was doing her gorilla walk (crawling with her hands on the floor and her legs straight) and she got so excited she started to bounce up and down. All of a sudden she did a face plant into the carpet. The good news is that we have carpet, so that saved her little nose quite a bit. The bad news is that she still got a blister right on the tip of her nose. She looked like a cute little clown. Hopefully it will heal quickly.
I know that this is just preparation for what is to come. Ella has discovered that she can successfully pull herself up on the stairs, furniture, and even us. This weekend she started trying to actually climb the stairs! We know that as she starts walking she is just going to get more boo boos. All we can hope is that once she is a stable walker, that her boo boos will decrease.
Other than the Rudolph nose, Ella is doing fine. She is such a little chatterbox and has quite the attitude if she needs it. She is getting rather bored with her toys (even though I feel like she has a ton that have overtaken our house) so when she grabs a toy that she’s tired of, or if we give her something to play with she’ll take it and throw it out of the way. Usually it’s a dramatic toss right over her head.
The other night Joe and I woke up at 3:30 am to Ella talking and playing in her crib. We just laid there hoping she would go back to sleep. Of course she didn’t, so eventually I went in to try and get her back to sleep. She was definitely ready to party when she saw me. I kept the lights off and tried to maintain a sleepy environment. I gave her a bottle hoping that would soothe her down. She took it and within a few minutes she was asleep…or so I thought. I gently took the bottle out of her mouth, only to have her open her eyes and say “dug.” I held my laugh in since it was not time to get up and play, but it was so funny! Apparently she was laying there thinking about dugs.
I know that this is just preparation for what is to come. Ella has discovered that she can successfully pull herself up on the stairs, furniture, and even us. This weekend she started trying to actually climb the stairs! We know that as she starts walking she is just going to get more boo boos. All we can hope is that once she is a stable walker, that her boo boos will decrease.
Other than the Rudolph nose, Ella is doing fine. She is such a little chatterbox and has quite the attitude if she needs it. She is getting rather bored with her toys (even though I feel like she has a ton that have overtaken our house) so when she grabs a toy that she’s tired of, or if we give her something to play with she’ll take it and throw it out of the way. Usually it’s a dramatic toss right over her head.
The other night Joe and I woke up at 3:30 am to Ella talking and playing in her crib. We just laid there hoping she would go back to sleep. Of course she didn’t, so eventually I went in to try and get her back to sleep. She was definitely ready to party when she saw me. I kept the lights off and tried to maintain a sleepy environment. I gave her a bottle hoping that would soothe her down. She took it and within a few minutes she was asleep…or so I thought. I gently took the bottle out of her mouth, only to have her open her eyes and say “dug.” I held my laugh in since it was not time to get up and play, but it was so funny! Apparently she was laying there thinking about dugs.
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