This is a difficult post to write. Not because it contains any upsetting information, in fact it’s the opposite…it contains absolutely wonderful information! It’s difficult because no matter how long I write, or what I say, you all will never know my true feelings on how wonderful the Eagles of MD are. I have mentioned this group several times before (here, here and here), and I have mentioned how wonderful they are in each post, but no matter how many times I mention them or how much I say, I simply can’t put into words how incredible, kind, loving and giving these people are. I am not a woman of few words (I’m a woman of a lot of words…if that makes sense), but even I don’t have the words to express how much these people have touched our lives.
So this weekend marked the end of the cycle for the Eagles. That means that starting today they have new Presidents for their chapters, and new charities to raise money for. This also means that this weekend we traveled up to MD and met up with Mary, the Executive Director for Debra, for the Eagles event celebrating the end of the term and presenting all the funds they’ve raised over the past year.
We arrived a bit late (what’s new) and were escorted to the front of the room where they had reserved us some seats. There were butterflies everywhere! Butterfly cakes, butterfly napkins, butterfly decorations, butterfly EVERYTHING! I loved it! Right after we arrived they served dinner, which was phenomenal! Ella preferred to stick with the mashed potatoes and bread, although she did take a couple of bites of meat. After dinner and a beautiful sign language performance, the presentations began. I won’t go into all of the details, but I’ll just say that this group isn’t just nice…they are also a lot of fun! Joe and I love the camaraderie the group has. They love to joke around and pick on each other. We spend much of the night laughing at something someone has said or done. After dinner they had a special surprise for Ella…everyone sang Happy Birthday and they brought her a star brownie with a big 3 candle in it. She loved being sang to, and blew out her candle like a champ. Then they gave her a basket full of cards, and one table had taken up a collection and gave that to her as a birthday present. When the money was laid on the table Ella’s eyes got really big and she said, “MONEY!!!” and grabbed the top few dollars. She (like usual) licked much of the frosting off the top of the star…since I’m such a great mom I helped her eat the brownie.
I won’t go into all the details of the night, but to sum it up, the Eagles raised around $31,000 for Debra! Incredible! I can’t remember the exact amount, but that doesn’t include the $5,000 they gave earlier, the $2,500 they gave to Ella (in savings bonds) or the money they donated for the CD that Jenni made when Ella was a baby. This group has worked so hard this year to raise money for EB. Like I said, there is no way to even begin to share how much their generosity means to Joe and me. Joe and I struggled to put into words how grateful we are (yes, I cried) and Ella even spoke into the microphone and said, "Fank you very much!"
After the presentations there was a dance, which Ella was very excited for. Joe and I made the mistake of telling her earlier in the day that we were going to a dance, so all night she kept asking when the music was coming and when were we going to dance. The first song started playing and Joe and Ella were the first ones on the dance floor. She had so much fun! Unfortunately it got late for Stinkerella, so it was time to head home. There was a quilted butterfly wall hanging that has been used throughout the year to raise EB awareness, and it was auctioned off at the beginning of the night. The couple who bought it gave it to Ella as a present (see, the Eagles are such good people!) and on the way home Ella said, “I need my new butterfly blankie.” So she covered herself up with the butterfly wall hanging and slept the entire way home (in fact, the wall hanging has now become a blanket and Ella sleeps under it every night).
The most touching part was at the end of the night we had person after person coming up to us and THANKING US!? What? THEY were thanking US? Umm…seriously? WE should be thanking THEM! They are the ones who have done all of this for Ella and all kids with EB! The VERY LEAST we could do was come to their events!
This group will always be a part of our hearts. They may be finished having Debra and EB as their charity for the year, but they can’t get rid of us…sorry Eagles. We’re sticking around, and you never know when we may drop back in for a visit. We love these people too much to say goodbye!
Wednesday, June 30, 2010
Wednesday, June 23, 2010
That was a lot of doctors!
We had a great trip to Cincinnati. Joe was studying super hard for the bar, so Metti went with Ella and me. It was her first time to Cincinnati, so I hope she enjoyed it. Ella did great on the plane rides both to and from OH (technically KY, but they’re neighbors and share an airport). On the way to OH a nice man came up and gave Ella a little toy airplane and gave me a little emergency medical kit. It was so nice! The toy plane kept Ella occupied for a good 30 minutes of the flight, and when the flight is only 1 ½ hours that’s a lot! On the way back home she sang songs and read books the entire way, and once we landed, the people in front of us commented on how cute she was (as if I didn’t know) and how much they enjoyed listening to her sing and play.
During this trip we were able to kill two birds with one stone. We did have the regular clinic that we always take Ella to, but it was also the Debra Patient Care Conference, so we got to meet with other EB families and hear the latest on research and other EB issues. It was so great to reunite with EB families that we’ve met through the clinic in years past, as well as meet others who I’ve called and emailed with for the past 3 years but never had the chance to meet in person.
So first I’ll fill you in on the clinic. To say that this is a packed day would be an understatement. I have to be honest, I was so glad that Ella now has a local ophthalmologist because that meant we had one less doctor appointment and our first appointment was at 10 am instead of 8 am like it usually is. Her first appointment was the bone scan and I was scared! Ella had an x-ray one time and she flipped out completely, so I was expecting that to happen again. I was pleasantly surprised. Another EB mom with a 3 year old kept telling me not to worry and that it was a piece of cake…I was still skeptical. Well, the mom was right. We went into the room, Ella laid on a table and we kept telling her that it was a big camera that was going to take her picture. Luckily this is a children’s hospital, so there were all sorts of stickers on the underside of the camera, including several Sponge Bob stickers. Ella laid perfectly still, just like she needed to, and talked to “Funge Bob.” It took about 10 minutes from the moment we entered the room until we walked out the door and Ella was a champ the whole time. The actual picture only took about 10 seconds.
This was perfect timing because it gave us about a 45 minute break to go grab breakfast. We ran down to the cafeteria and Ella alternated between eating Coco Krispies and Froot Loops. The good news is that she ate a lot. The bad news is that her next appointment was with the dentist. This is the one appointment that actually goes BETTER when Ella cries. She didn’t really scream, she was just annoyed, so her cry was more of a whine. The dentist was able to get a good look at her teeth without causing any mouth damage in the process. The great news…NO CAVITIES!!! Woo Hoo! She does have significant oral scarring, which we already knew. This means that her mouth is smaller than the average mouth, so it’s harder for her to get all the food out when she eats, so we just have to be careful. Luckily, Ella doesn’t like having food stuck in her mouth and she usually tells us when something is stuck so that we can get it out.
Now it was time for lunch, so we ran back down to the cafeteria and shoved some food in our mouth. We were able to connect with 2 other EB families while we were down there and get some good conversation in before the clinic started. We had to be upstairs by 1:00 for the clinic. This is such a blessing and a curse. It’s great to just sit in one room and see all the doctors we need to see, but it makes for a long time (4 hours). And it happens right in the middle of nap time, which can be interesting. I won’t go into all the detail from all of the doctors, but I’ll just hit the highlights.
During this trip we were able to kill two birds with one stone. We did have the regular clinic that we always take Ella to, but it was also the Debra Patient Care Conference, so we got to meet with other EB families and hear the latest on research and other EB issues. It was so great to reunite with EB families that we’ve met through the clinic in years past, as well as meet others who I’ve called and emailed with for the past 3 years but never had the chance to meet in person.
So first I’ll fill you in on the clinic. To say that this is a packed day would be an understatement. I have to be honest, I was so glad that Ella now has a local ophthalmologist because that meant we had one less doctor appointment and our first appointment was at 10 am instead of 8 am like it usually is. Her first appointment was the bone scan and I was scared! Ella had an x-ray one time and she flipped out completely, so I was expecting that to happen again. I was pleasantly surprised. Another EB mom with a 3 year old kept telling me not to worry and that it was a piece of cake…I was still skeptical. Well, the mom was right. We went into the room, Ella laid on a table and we kept telling her that it was a big camera that was going to take her picture. Luckily this is a children’s hospital, so there were all sorts of stickers on the underside of the camera, including several Sponge Bob stickers. Ella laid perfectly still, just like she needed to, and talked to “Funge Bob.” It took about 10 minutes from the moment we entered the room until we walked out the door and Ella was a champ the whole time. The actual picture only took about 10 seconds.
This was perfect timing because it gave us about a 45 minute break to go grab breakfast. We ran down to the cafeteria and Ella alternated between eating Coco Krispies and Froot Loops. The good news is that she ate a lot. The bad news is that her next appointment was with the dentist. This is the one appointment that actually goes BETTER when Ella cries. She didn’t really scream, she was just annoyed, so her cry was more of a whine. The dentist was able to get a good look at her teeth without causing any mouth damage in the process. The great news…NO CAVITIES!!! Woo Hoo! She does have significant oral scarring, which we already knew. This means that her mouth is smaller than the average mouth, so it’s harder for her to get all the food out when she eats, so we just have to be careful. Luckily, Ella doesn’t like having food stuck in her mouth and she usually tells us when something is stuck so that we can get it out.
Now it was time for lunch, so we ran back down to the cafeteria and shoved some food in our mouth. We were able to connect with 2 other EB families while we were down there and get some good conversation in before the clinic started. We had to be upstairs by 1:00 for the clinic. This is such a blessing and a curse. It’s great to just sit in one room and see all the doctors we need to see, but it makes for a long time (4 hours). And it happens right in the middle of nap time, which can be interesting. I won’t go into all the detail from all of the doctors, but I’ll just hit the highlights.
* They are very pleased with Ella’s eating and growth curve. She weighed in at 27 pounds and is exactly 3 feet tall. This puts her in about the 20th percentile for weight and about the 30th for height. Her BMI has gone down a little bit (BMI isn’t even calculated for the average kid, but for EB kids it’s very important), but not enough to warrant significant concern. All in all they are really pleased and are so glad that she eats so much meat (what can I say, her mom and dad are both meat eaters).
* At this point Ella doesn’t show any signs of internal involvement (PTL!!!). That could change in a second, but the GI doctor doesn’t think she has any strictures in her esophagus, especially since she’s eating meat (apparently that’s a big deal) and pretty much eats anything she wants to. He doesn’t feel that we need to have any testing done at this point. While at the conference I learned some valuable statistics. 30% of RDEB kids (Ella) need a g-tube. I thought it was much higher than this. I also assumed that most got g-tubes when they were small, but I’ve learned that some kids don’t get them until they’re teenagers, or even into adulthood. I also heard from a lot of parents who emphasized that the g-tube is not a punishment and in fact, their kid was able to be more “normal” than ever before because they weren’t so concerned with eating and were finally getting the calories their body needs. I also learned that 60% of RDEB kids need a dilatation (if there is closure in the throat this is a procedure where they go in and stretch it back out). I also thought that once you get a dilatation that you have to go back every 6 months to a year to get one. Apparently that’s not the case and some people will get one then don’t need another one for several years.
* We had a lengthy conversation with the hand doctor and basically, he gave us some suggestions on things to do, but at this point he’s not too concerned. Maybe I should take a picture of Ella’s hands to show you all what we’re dealing with. Basically, on her right hand her middle finger and ring finger have connected. He said that if you have to have 2 fingers joined together, these are the best ones to have connected. Rarely do you use those two fingers apart from each other. In fact, the only time it’s needed to have them separate are to wear a ring. Apparently it’s very common for babies (non-EB babies) to be born with those to fingers connected, and many go on to lead a completely normal life without ever having their fingers separated. He said that she will likely need hand surgery in the future, but he’s not going to do surgery just for those fingers and that we should just treat them as one finger and she’ll be fine. After talking to him I felt so much better and honestly, I wondered why I was so worried in the first place. We are going to start wrapping her hands and see if we can prevent further webbing and contractures, and hopefully reverse some of the contractures that are already forming, but all in all I feel much better about the state of her hands. He also emphasized how great it is that she has complete use of her thumbs. The thumb is the most important finger and he said that a lot of EB people won’t have any surgery at all until their thumb is completely fused.
As always, the doctors were incredible! We are fortunate to have a wonderful dermatologist, pediatrician and ophthalmologist locally, but it’s so comforting to have all of these EB specialists to evaluate Ella each year. They know exactly what to look for and I don’t have to worry about Ella getting more damage to her skin while we’re there because they’re all so gentle. And I know that they see several EB kids, so they know if what she’s experiencing is normal EB stuff or if we should be concerned. It is so comforting!
Ella was a champ! She let the doctors look at her hands, listen to her heart, and look at her boo boos without a problem. She was completely exhausted, so at one point during the day she just laid down on the table and fell asleep. She slept about an hour before waking up. Unfortunately she woke up right as our room was filled with new people, so she had a minor melt-down, but nothing that she didn’t get over quickly. At the end of the day we had to go get her blood taken and as we were leaving the clinic Ella said, “That was a lot of doctors!” Yes, it was about 13 medical professionals in all (although I can’t remember exactly how many it was).
After the clinic we headed to the Newport Aquarium to meet the EB families that were attending the Patient Care Conference. It was a fun night of checking out all the fish and just hanging out. Toward the end of the aquarium Ella leaned back in her stroller and said “Mommy, I’m ready to go.” She was exhausted. I looked at Metti and asked if she was ready to go and she yawned. Yep, it was time to go to bed. Of course as soon as we got to the hotel room Ella asked for a hamburger, but it was late so I just gave her a snack and we went to bed.
Everyone is really pleased with how Ella is doing. They don’t see any issues of concern right now, so we’ll continue to take her back once a year unless something major develops. It was a good visit.
Monday, June 21, 2010
Happy Birthday Ella!
Dear Ella,
My precious girl! I am so excited to celebrate this day with you! You are my favorite little girl! I love who you are growing up to be. Today we can do things we couldn’t 3 years ago. We can play and dance and sing. We can do puzzles and play games, and even have a tea party. You have developed a sense of humor and love to joke around with me and daddy. You now have your own thoughts and opinions and have proven that you can be just as stubborn as your mom is. You want to choose your own clothes, and if you don’t feel like wearing pink flowers, you won’t. You want to walk where you want to walk and eat what you want to eat.
Right now your favorite activity is going to the library for story time. You and Boppie go each day and when I get home from work the first thing you do is tell me all about your day; what stories you read, what songs you sang, and most importantly, you show me the craft you made. Your favorite books are by Dr. Seuss. You have the entire book of “Green Eggs and Ham” memorized and will often insist that you need to eat green eggs and ham for breakfast. You love to read and will read 5-6 books at one time. In fact, you have recently decided that having mommy and daddy read to you is not enough. You want to read. So we read a page, then you repeat it as though you're reading it yourself.
You are extremely shy. This is probably the most puzzling thing for me, and, in all honesty, this has been harder for me to accept than your EB. Your dad and I have never been known for being shy, yet here we have been given a shy child. For a long time I blamed myself for not getting you out more and not taking you more places when you were a baby, but recently have I begun to accept that this is just who you are. You’re different than daddy and me, and that’s ok. And although you’re shy, you are just who God made you to be. I often think of Moses and how he told God that he wasn’t an “eloquent speaker.” Maybe he, too, was shy…yet God used him to do amazing things, just as He will use you to do amazing things.
You have been given some incredible gifts by your grandparents:
From your Paw Paw you got your love of music. Music is in your heart and you sing all the time! You correct daddy when he sings the wrong words and often will tell him that you don’t want him to sing with you…you prefer to perform solo. I am positive that there is no greater sound than hearing your precious voice bellow out song after song. Whether you’re singing a song you already know, or you’re making up the words to your own song, music is in your heart. I envision you singing in Carnegie Hall, or starring on Broadway.
From your GiGi you got your love of art and color. Our dining room has turned into your art gallery. No sooner do I clean up the paint and paint brushes, then you decide you have yet another masterpiece to create. If I had enough space I would hang your paintings all over the house. When you paint you use a lot of color and show your various techniques of circles, triangles, straight lines and squiggly lines.
From your Grammy you got your love of cooking. You are my little helper and no matter what I’m making you want to pull the chair right up to the counter to help me pour, stir or taste. Baked goods are your specialty because you, like your mommy, have a sweet tooth. I think birthdays are your favorite because you get to help make the cake as well as help eat it, although you typically just eat the frosting off the top and leave all the cake.
In September you will head to preschool. The thought of this brings me to tears. On one hand I want to keep you close. I want to spend our days together playing, just you and me. On the other hand, I know in my heart that it’s time…it’s time for you to venture out and experience new things. There is an entire world beyond our house, and it’s time for you to see it. Preschool will be so good for you.
Ella, you are my heart. Just when I think it’s impossible to love you more, I wake up the next morning and there it is, I love you even more. You make me a better person. Thank you for who you are and for all that you have taught me. I am thankful for each and every day God has given us and I look forward to all that the future holds. I love you my sweet girl.
Love,
Mommy
My precious girl! I am so excited to celebrate this day with you! You are my favorite little girl! I love who you are growing up to be. Today we can do things we couldn’t 3 years ago. We can play and dance and sing. We can do puzzles and play games, and even have a tea party. You have developed a sense of humor and love to joke around with me and daddy. You now have your own thoughts and opinions and have proven that you can be just as stubborn as your mom is. You want to choose your own clothes, and if you don’t feel like wearing pink flowers, you won’t. You want to walk where you want to walk and eat what you want to eat.
Right now your favorite activity is going to the library for story time. You and Boppie go each day and when I get home from work the first thing you do is tell me all about your day; what stories you read, what songs you sang, and most importantly, you show me the craft you made. Your favorite books are by Dr. Seuss. You have the entire book of “Green Eggs and Ham” memorized and will often insist that you need to eat green eggs and ham for breakfast. You love to read and will read 5-6 books at one time. In fact, you have recently decided that having mommy and daddy read to you is not enough. You want to read. So we read a page, then you repeat it as though you're reading it yourself.
You are extremely shy. This is probably the most puzzling thing for me, and, in all honesty, this has been harder for me to accept than your EB. Your dad and I have never been known for being shy, yet here we have been given a shy child. For a long time I blamed myself for not getting you out more and not taking you more places when you were a baby, but recently have I begun to accept that this is just who you are. You’re different than daddy and me, and that’s ok. And although you’re shy, you are just who God made you to be. I often think of Moses and how he told God that he wasn’t an “eloquent speaker.” Maybe he, too, was shy…yet God used him to do amazing things, just as He will use you to do amazing things.
You have been given some incredible gifts by your grandparents:
From your Paw Paw you got your love of music. Music is in your heart and you sing all the time! You correct daddy when he sings the wrong words and often will tell him that you don’t want him to sing with you…you prefer to perform solo. I am positive that there is no greater sound than hearing your precious voice bellow out song after song. Whether you’re singing a song you already know, or you’re making up the words to your own song, music is in your heart. I envision you singing in Carnegie Hall, or starring on Broadway.
From your GiGi you got your love of art and color. Our dining room has turned into your art gallery. No sooner do I clean up the paint and paint brushes, then you decide you have yet another masterpiece to create. If I had enough space I would hang your paintings all over the house. When you paint you use a lot of color and show your various techniques of circles, triangles, straight lines and squiggly lines.
From your Grammy you got your love of cooking. You are my little helper and no matter what I’m making you want to pull the chair right up to the counter to help me pour, stir or taste. Baked goods are your specialty because you, like your mommy, have a sweet tooth. I think birthdays are your favorite because you get to help make the cake as well as help eat it, although you typically just eat the frosting off the top and leave all the cake.
In September you will head to preschool. The thought of this brings me to tears. On one hand I want to keep you close. I want to spend our days together playing, just you and me. On the other hand, I know in my heart that it’s time…it’s time for you to venture out and experience new things. There is an entire world beyond our house, and it’s time for you to see it. Preschool will be so good for you.
Ella, you are my heart. Just when I think it’s impossible to love you more, I wake up the next morning and there it is, I love you even more. You make me a better person. Thank you for who you are and for all that you have taught me. I am thankful for each and every day God has given us and I look forward to all that the future holds. I love you my sweet girl.
Love,
Mommy
Tuesday, June 15, 2010
May Photos
Now that we're half-way through June, I decided it would be a good idea to finally add the May photos. Enjoy!
Monday, June 14, 2010
Let’s go to the movies!
Remember the movie Annie? When Daddy Warbucks takes her and Ms. Farrell to the movies…it’s Annie’s first movie and she’s in awe of all that’s around her. I wish going to the movies was as glamorous as it is in Annie. Anyway, yesterday we took Ella to her first movie in a theatre. It was hot outside and we had just had lunch at a nearby restaurant, so Joe wanted to check out the movie selection. Let me say that since Ella’s birth I’m usually the one making the suggestions to “step outside the box.” I’m the one that has to convince Joe that a swingset is a good idea, or that she’ll love riding the carousel, or that Sesame Place will be so much fun! But yesterday, Joe was the one that had to convince me. He wanted to go to a movie and he was convinced that Ella would be fine. I was convinced that we’d sit there for 30 minutes then she’d get bored and we’d have to leave.
So we went into the movie theatre just to check out what was showing. Joe wanted to see the A-Team, but I knew there was no way Ella would sit through that. Option 2, Robin Hood…again, that wasn’t going to happen. However, the second Ella heard about Marmaduke she was hooked! A movie with talking dogs…what could be any better? So we went to see Marmaduke, and I am pleased to admit that Joe was totally right! Ella sat through the entire movie, clutching onto her doggie every minute, afterall, doggie loves a good talking dog movie too. She started out on Joe’s lap, then about half way through she came to my lap, then toward the end she decided to stand up. And yes, she talked much of the way through the movie (“Look mommy! That doggie is very sad!”), but so did all the other kids in the theatre so it wasn’t a big deal. She loved every minute of it. In fact, this morning when Metti arrived the first thing Ella told her was that she went to see a doggie movie!
This opens up a world of possibilities for us! Ok, not a WORLD but definitely more than we had before. Our summer activities are limited because it’s always so stinking hot outside, which means parks are mostly out of the question. Going to the pool isn’t as easy as just going to the pool. It involves a complete bandage change, and if the pool is far from our house then we have to ride home with completely wet bandages (imagine having a sponge all over your body…that’s what the bandages are like). It’s just very complicated. You can only go to the library so many times a week. Anyway, since Ella’s movie experience I learned that the theatre has free family movies every Tuesday and Wednesday morning at 10 am. They offer a G rated movie and a PG rated movie. When I got online I discovered that their movies include The Pirates Who Don’t Do Anything (Ella’s a big Larry fan), Curious George (a show she watches every morning), and Horton Hears a Who (you know about her and Dr. Seuss). There are several other movies, but these are ones we’re sure she’d enjoy. So it looks like Ella’s summer activities have just expanded.
After the movie we headed to Toys R Us to get Ella’s birthday present. Yes, she got it a week early, but that’s because we’re leaving for Cincinnati this week and will be gone until Saturday, so I wanted to get it set up before her birthday. Ella got a play kitchen and it even makes real noise! It makes frying noise and boiling noise, and it has a phone that makes noise. She was so excited, although I think she was most excited that with the kitchen she got a little food pack with McDonald’s food. She kept asking for a yummy orange drink.
In other Murray news, Metti, Ella and I head out for Cincinnati this week. This year our clinic appointment coincides with the EB Patient Care Conference, so we’ll have the opportunity to connect with other EB families from around the country. Since Joe is studying for the bar, Metti is going with me to help with Ella. I think it will be a great opportunity for her to hear first-hand what the doctors have to say and she’ll have the chance to ask questions. She’ll also get to see other kids with EB, which will be good for her, but I’m sure will be emotional as well. We will spend Wednesday afternoon and all day Friday at the PCC, but Thursday will be spent at the EB clinic. Please keep us in your prayers as we go through the appointments. Ella has to get a bone scan this year, so that’s going to be a new adventure that I’m sure she won’t cooperate with. The good news is that now that she has an ophthalmologist here, that’s one less doctor visit we’ll have. Thursday is always a very long day, so please pray that Ella remains cooperative and content as all these strangers are looking her over. Please pray for Metti and I to have the wisdom on how to best deal with Ella in this new setting, to ask the doctors the right questions, and to retain the information we learn at both the clinic and the conference.
Thank you all for your support and prayers. We appreciate them so much!
So we went into the movie theatre just to check out what was showing. Joe wanted to see the A-Team, but I knew there was no way Ella would sit through that. Option 2, Robin Hood…again, that wasn’t going to happen. However, the second Ella heard about Marmaduke she was hooked! A movie with talking dogs…what could be any better? So we went to see Marmaduke, and I am pleased to admit that Joe was totally right! Ella sat through the entire movie, clutching onto her doggie every minute, afterall, doggie loves a good talking dog movie too. She started out on Joe’s lap, then about half way through she came to my lap, then toward the end she decided to stand up. And yes, she talked much of the way through the movie (“Look mommy! That doggie is very sad!”), but so did all the other kids in the theatre so it wasn’t a big deal. She loved every minute of it. In fact, this morning when Metti arrived the first thing Ella told her was that she went to see a doggie movie!
This opens up a world of possibilities for us! Ok, not a WORLD but definitely more than we had before. Our summer activities are limited because it’s always so stinking hot outside, which means parks are mostly out of the question. Going to the pool isn’t as easy as just going to the pool. It involves a complete bandage change, and if the pool is far from our house then we have to ride home with completely wet bandages (imagine having a sponge all over your body…that’s what the bandages are like). It’s just very complicated. You can only go to the library so many times a week. Anyway, since Ella’s movie experience I learned that the theatre has free family movies every Tuesday and Wednesday morning at 10 am. They offer a G rated movie and a PG rated movie. When I got online I discovered that their movies include The Pirates Who Don’t Do Anything (Ella’s a big Larry fan), Curious George (a show she watches every morning), and Horton Hears a Who (you know about her and Dr. Seuss). There are several other movies, but these are ones we’re sure she’d enjoy. So it looks like Ella’s summer activities have just expanded.
After the movie we headed to Toys R Us to get Ella’s birthday present. Yes, she got it a week early, but that’s because we’re leaving for Cincinnati this week and will be gone until Saturday, so I wanted to get it set up before her birthday. Ella got a play kitchen and it even makes real noise! It makes frying noise and boiling noise, and it has a phone that makes noise. She was so excited, although I think she was most excited that with the kitchen she got a little food pack with McDonald’s food. She kept asking for a yummy orange drink.
In other Murray news, Metti, Ella and I head out for Cincinnati this week. This year our clinic appointment coincides with the EB Patient Care Conference, so we’ll have the opportunity to connect with other EB families from around the country. Since Joe is studying for the bar, Metti is going with me to help with Ella. I think it will be a great opportunity for her to hear first-hand what the doctors have to say and she’ll have the chance to ask questions. She’ll also get to see other kids with EB, which will be good for her, but I’m sure will be emotional as well. We will spend Wednesday afternoon and all day Friday at the PCC, but Thursday will be spent at the EB clinic. Please keep us in your prayers as we go through the appointments. Ella has to get a bone scan this year, so that’s going to be a new adventure that I’m sure she won’t cooperate with. The good news is that now that she has an ophthalmologist here, that’s one less doctor visit we’ll have. Thursday is always a very long day, so please pray that Ella remains cooperative and content as all these strangers are looking her over. Please pray for Metti and I to have the wisdom on how to best deal with Ella in this new setting, to ask the doctors the right questions, and to retain the information we learn at both the clinic and the conference.
Thank you all for your support and prayers. We appreciate them so much!
Wednesday, June 9, 2010
The Waiting Game
I have a friend who also has a blog, and lately she’s been sharing about her struggle with infertility. Reading her blog has tugged at my heart and really gotten me thinking. As different as our situations are, we share many of the same feelings. She said that she has “defective ovaries.” I don’t have defective ovaries…I guess you could say that Joe and I have defective genes. As I’ve mentioned before, the type of EB that Ella has is a recessive gene, which means there’s a 25% chance that another child will have EB. A lot of families have taken the risk. We won’t. I know too many families that have taken the chance and have multiple kids with EB. It’s not worth it to us.
In some ways I feel like we have it easier than those who face infertility. I don’t have to wake up every morning and take my temperature. I don’t have to monitor my cycle and anxiously await each “time of the month.” I don’t have to go to the doctor month after month and have my body analyzed to determine what is wrong and what new medicines may help. I don’t have to take pills or get shots. However, since there isn’t anything “wrong” with me and my body, it’s almost like having another child is always right in front of us, yet we can’t reach it. It’s right there, tempting us, ticking our noses…but we know in our hearts that we can’t do it. If we purposefully got pregnant and brought another kid into the world that had EB, I don’t know that I could forgive myself. It’s not fair to make another child go through what Ella has to go through.
The question I get more than anything else is whether or not we’re going to have more kids. We want to. Joe and I have always wanted a big family, so we want to have more kids. I want it for us, and I want it for Ella. I see how other kids with EB really lean on their siblings for support. The siblings are their best friends because they are the only ones who really know what the EB kid goes through. And in talking to some friends of mine who are only children, they strongly encourage us to have more kids. Each of them has their own reasons behind wanting a sibling, but they all agree that it’s important. I cherish my relationship with my brother, and I know Joe would say the same thing about each of his siblings. There’s something special about having someone who grew up in your house with your parents and who knows what it’s like to be in your family. The issue we face is how. What means should we use to expand our family? This is something Joe and I have been prayerfully exploring since Ella’s birth, and at this point God hasn’t given us a clear direction to pursue.
I think for those who haven’t walked in our shoes, it’s easy to make suggestions. “Why don’t you get artificially inseminated? How about donor eggs? 25% isn’t that high…you will probably have an EB-free kid. Are you against adopting?” (I love how the adoption question automatically assumes that we have something against adopting instead of asking if we’ve explored adoption as a possibility) The reality is that it’s just not that easy…at least not for us. There are pros and cons to every avenue, and in the end, we need God to give us clear direction on which option is the best for us. Not what others would do or what has been the right decision for them, but what is the best for Joe, Katie and Ella.
A few weeks ago I went to a baby shower. There were 15 women there. 6 were pregnant and 2 had just had babies in the last couple of months. In one week I had 4 facebook friends announce that they were pregnant. Every time I go to the store (regular stores like Target and Safeway) I feel like I pass 2 dozen pregnant women. And don’t even get me started on all the pregnant women at church. For the most part I don’t have difficulty attending baby showers and I don’t get upset when people announce that they’re pregnant (for the most part I’m ok…sometimes I hear their good news and I completely lose it). I’m genuinely happy for people who are having a baby. I like holding new babies and I’m happy for people who are able to have healthy babies with no problems. That said, being in our life situation in the midst of a baby boom isn’t easy. I want to have another baby. I want Ella to be a big sister. I want to pull all of her old baby things out of the attic and put them to good use. I want to move all of the furniture out of Joe’s office (sorry Joe) and create another baby room. I am ready for that…I am ready to get started now…I am ready for another Murray to enter this world. However, right now, it seems that God isn’t ready. He has us waiting.
Sometimes, I think that God is waiting on us…He wants us to make the first move, then he’ll take it from there. In the past when we’ve played the waiting game, Joe and I have adopted the attitude that we’ll just start walking and wait for God to close the door. If it’s right, then He’ll keep the path clear. If it’s not, then he’ll steer us in another direction. Maybe that’s where we are right now…maybe God is waiting on us to make the first move. Regardless of when we are shown our next steps, or whether or not we make the decision to just start moving, I know that God will show us what is right in HIS time. For right now, we wait.
In some ways I feel like we have it easier than those who face infertility. I don’t have to wake up every morning and take my temperature. I don’t have to monitor my cycle and anxiously await each “time of the month.” I don’t have to go to the doctor month after month and have my body analyzed to determine what is wrong and what new medicines may help. I don’t have to take pills or get shots. However, since there isn’t anything “wrong” with me and my body, it’s almost like having another child is always right in front of us, yet we can’t reach it. It’s right there, tempting us, ticking our noses…but we know in our hearts that we can’t do it. If we purposefully got pregnant and brought another kid into the world that had EB, I don’t know that I could forgive myself. It’s not fair to make another child go through what Ella has to go through.
The question I get more than anything else is whether or not we’re going to have more kids. We want to. Joe and I have always wanted a big family, so we want to have more kids. I want it for us, and I want it for Ella. I see how other kids with EB really lean on their siblings for support. The siblings are their best friends because they are the only ones who really know what the EB kid goes through. And in talking to some friends of mine who are only children, they strongly encourage us to have more kids. Each of them has their own reasons behind wanting a sibling, but they all agree that it’s important. I cherish my relationship with my brother, and I know Joe would say the same thing about each of his siblings. There’s something special about having someone who grew up in your house with your parents and who knows what it’s like to be in your family. The issue we face is how. What means should we use to expand our family? This is something Joe and I have been prayerfully exploring since Ella’s birth, and at this point God hasn’t given us a clear direction to pursue.
I think for those who haven’t walked in our shoes, it’s easy to make suggestions. “Why don’t you get artificially inseminated? How about donor eggs? 25% isn’t that high…you will probably have an EB-free kid. Are you against adopting?” (I love how the adoption question automatically assumes that we have something against adopting instead of asking if we’ve explored adoption as a possibility) The reality is that it’s just not that easy…at least not for us. There are pros and cons to every avenue, and in the end, we need God to give us clear direction on which option is the best for us. Not what others would do or what has been the right decision for them, but what is the best for Joe, Katie and Ella.
A few weeks ago I went to a baby shower. There were 15 women there. 6 were pregnant and 2 had just had babies in the last couple of months. In one week I had 4 facebook friends announce that they were pregnant. Every time I go to the store (regular stores like Target and Safeway) I feel like I pass 2 dozen pregnant women. And don’t even get me started on all the pregnant women at church. For the most part I don’t have difficulty attending baby showers and I don’t get upset when people announce that they’re pregnant (for the most part I’m ok…sometimes I hear their good news and I completely lose it). I’m genuinely happy for people who are having a baby. I like holding new babies and I’m happy for people who are able to have healthy babies with no problems. That said, being in our life situation in the midst of a baby boom isn’t easy. I want to have another baby. I want Ella to be a big sister. I want to pull all of her old baby things out of the attic and put them to good use. I want to move all of the furniture out of Joe’s office (sorry Joe) and create another baby room. I am ready for that…I am ready to get started now…I am ready for another Murray to enter this world. However, right now, it seems that God isn’t ready. He has us waiting.
Sometimes, I think that God is waiting on us…He wants us to make the first move, then he’ll take it from there. In the past when we’ve played the waiting game, Joe and I have adopted the attitude that we’ll just start walking and wait for God to close the door. If it’s right, then He’ll keep the path clear. If it’s not, then he’ll steer us in another direction. Maybe that’s where we are right now…maybe God is waiting on us to make the first move. Regardless of when we are shown our next steps, or whether or not we make the decision to just start moving, I know that God will show us what is right in HIS time. For right now, we wait.
Friday, June 4, 2010
Looks like we made it!
Joe officially graduated last Friday. Yep, we made it! I can hardly believe that we’re still here and in one piece. The past 4 years have had some incredible ups and downs, and there were times that neither of us was sure we’d get through it.
Joe started law school in August 2006, one year after we got married. In October 2006 we found out that Ella was on her way. Yeah, how’s that for timing. I wouldn’t trade Ella for anything, but even now I wonder what made us (me) think it was a good idea to have a kid while Joe was in law school. The first year of law school is the most stressful, and with us expecting a baby and him working, things were definitely stressful…but we made it.
Ella was born in June 2007. God’s timing is perfect! She was born after Joe’s finals and he wasn’t taking any summer classes, so we had the entire summer to deal with having a new baby, let alone a new baby with EB. The thought of Joe dropping out of school crossed both of our minds, but we had worked too hard and in my mind, quitting wasn’t an option. I believe the conversation went something like this:
Joe: I’ve been thinking…
Me: I know what you’re going to say and it’s not going to happen.
Joe: I think I should drop out of school.
Me: No.
Joe: Just for a semester, then I can go back.
Me: No.
I don’t remember how the conversation ended, but Joe stayed in school and here we are 3 years later. Ultimately, God gave both of us the peace that it was going to work out.
In September I went back to work and Joe quit his day-job to stay home with Ella. He started working a part-time job that he could do on the weekends or during his free time (as if he had any). He stayed with Ella during the day while I worked. At 5:00 pm I would leave my office and meet Joe in a parking lot in Crystal City, half way between my office and our house. We would move Ella from his car to my car, then I would drive home and he’d go to class. I had to leave at exactly 5:00 because if I left even 10 minutes late then it meant that Joe would be late for class. Joe got home around 9:30 pm and would eat dinner, then I’d go upstairs and prepare for Ella’s bath and bandage change. At this time her bandage change was still taking us at least 2 hours, usually longer. We’d start around 10 pm and if we were lucky we were finished by midnight. After cleaning up and pumping (sorry if that’s TMI for you men) we’d go to bed. I woke up at 6 am the next morning to pump again and get ready for work. I was on the road around 7 am to sit in traffic for an hour so I could be at the office by 8, and our schedule would start all over again. Thank heavens we got Metti at the end of November, which definitely made things easier, but Joe and I were still doing the bandage changes at night. In December I was blessed with a new job that was just 1 mile from our house, so I didn’t have to make the hour commute anymore. The following semester Joe was able to work his schedule so that he only had class 2 nights a week, so we just skipped bandage changes those nights. It worked out so much easier. By the time we reached Joe’s last semester of class we had life down to a science. Metti started helping with the bandages or I would do them alone, and by the time Joe got home from class we could have a somewhat “normal” life.
At the time people kept asking us how we were balancing it all, and the only answer we could give was, “I don’t know.” If I was asked today how we made it through law school, especially Joe’s first semester back after Ella was born, I would give the same answer, I don’t know. The only explanation is that God provided us with the strength we needed. I used to lay in bed and cry from extreme exhaustion and pray that God would take my few hours of sleep and multiply them so that I could just function the next day. Joe was just as exhausted. I assumed that during the day Ella would sleep and Joe would be able to get a good 2 hours of studying in. Not so. She only slept for 30-45 minute increments and between her naps Joe was feeding her or just taking care of her. Needless to say, studying for law school in 30-45 minute segments isn’t the most productive way to study. Regardless of how it happened, here we are, 4 years later and Joe has a law degree. I couldn’t be more proud of him!
My parents came into town on Sunday May 23rd to spend the week with us and to be here on Friday for Joe’s graduation. Janet (Joe’s mom) came into town Thursday night and Joe’s brother and 2 of his sisters left their homes bright and early on Thursday morning to drive down for the graduation ceremony. It was so great to have family here to celebrate with us! Thankfully we didn’t need tickets for the graduation, so anyone who wanted to come could. That meant that those listed above, along with myself, Metti and Ella all headed to the Basilica of the National Shrine of the Immaculate Conception for the ceremony. Thank heavens Janet got there early and saved seats for all of us, because the place was completely packed!
I was fully prepared to cry through the entire ceremony, but I kept swallowing those lumps in my throat and made it through without any hysterical bawling. Of course after the ceremony when Joe came over to us and I saw him completely decked out in his cap and gown, that’s when I completely lost it! He looked so handsome and I was so proud of him. The sisters (Jenny and Trish) and I decided that when they called Joe’s name we were going to stand up and yell…and boy did we yell. Everyone knew who Joe belonged to! And every time anyone clapped for any reason, whether a speaker, another graduate, or anything else, Ella would clap her hands and say, “Yay daddy!” I must also note that on Friday morning when Ella was getting ready for the graduation, she picked out her very special glitter shoes (chosen by our loyal followers) to wear for the occasion. They are still a bit big, which is why she hasn't been wearing them around, but she knew they were just what she needed for daddy's graduation.
After the ceremony the school put on a wonderful reception. This wasn’t just cookies, cheese and punch. This was a major reception with sandwiches, a mashed potato bar (I had never heard of one but it was so good), pop corn, ice cream, cup cakes, chips, and on and on. We were able to sit together and talk about the day and all the wonderful things that surrounded it. After lunch we headed to our house to relax for the afternoon. Unfortunately we had to say goodbye to Jenny and Trish who had to rush back home, but the rest of us went to dinner to complete the day of celebration.
Saturday morning we woke up early (Joe’s brother, Billy, headed home before the rest of us woke up) and headed to breakfast while the cleaning lady came and cleaned the house for the party (oh how I love Ana!). After breakfast Janet, my mom (Gale) and I headed to the grocery store to get everything for the big celebration. My cousin drove in from Durham, NC to go to the party, and my dad’s cousin and her family all came down from MD to be there. We were really touched by how many people were willing to travel to come celebrate with Joe. The party was a hit and we are so thankful to everyone who made the time to come celebrate with us. (Side Note: It had been a long few days for Ella, so she stayed in her pajamas all day on Sat. Too bad the adorable outfit I bought for the party remained in her closet, but at least her jammies had cupcakes on them.) After the party we were exhausted, so we ordered Chinese food and stayed at home. I think we were all in bed around 9:30 pm.
Janet left Sunday morning and my parents left Monday afternoon. Our house is now quiet and Ella’s days are back to just her and Metti. It was a great weekend! Thanks to everyone for helping make it special. Joe started his bar class last week, so now he’s spending his nights back in class. The good news is that this is only 8 weeks…although all of my lawyer friends have told me that the next 8 weeks I need to be more understanding and forgiving than ever before. Apparently people get very cranky while studying for the bar.
**As I mentioned in my previous post, our internet was down for several weeks and we just got reconnected. I know we are seriously lacking in pictures, so I'll be sure to get some new ones downloaded this weekend. And yes, there are plenty of graduation pictures, although none from the party since I was too busy talking to our guests and not taking pictures.
Joe started law school in August 2006, one year after we got married. In October 2006 we found out that Ella was on her way. Yeah, how’s that for timing. I wouldn’t trade Ella for anything, but even now I wonder what made us (me) think it was a good idea to have a kid while Joe was in law school. The first year of law school is the most stressful, and with us expecting a baby and him working, things were definitely stressful…but we made it.
Ella was born in June 2007. God’s timing is perfect! She was born after Joe’s finals and he wasn’t taking any summer classes, so we had the entire summer to deal with having a new baby, let alone a new baby with EB. The thought of Joe dropping out of school crossed both of our minds, but we had worked too hard and in my mind, quitting wasn’t an option. I believe the conversation went something like this:
Joe: I’ve been thinking…
Me: I know what you’re going to say and it’s not going to happen.
Joe: I think I should drop out of school.
Me: No.
Joe: Just for a semester, then I can go back.
Me: No.
I don’t remember how the conversation ended, but Joe stayed in school and here we are 3 years later. Ultimately, God gave both of us the peace that it was going to work out.
In September I went back to work and Joe quit his day-job to stay home with Ella. He started working a part-time job that he could do on the weekends or during his free time (as if he had any). He stayed with Ella during the day while I worked. At 5:00 pm I would leave my office and meet Joe in a parking lot in Crystal City, half way between my office and our house. We would move Ella from his car to my car, then I would drive home and he’d go to class. I had to leave at exactly 5:00 because if I left even 10 minutes late then it meant that Joe would be late for class. Joe got home around 9:30 pm and would eat dinner, then I’d go upstairs and prepare for Ella’s bath and bandage change. At this time her bandage change was still taking us at least 2 hours, usually longer. We’d start around 10 pm and if we were lucky we were finished by midnight. After cleaning up and pumping (sorry if that’s TMI for you men) we’d go to bed. I woke up at 6 am the next morning to pump again and get ready for work. I was on the road around 7 am to sit in traffic for an hour so I could be at the office by 8, and our schedule would start all over again. Thank heavens we got Metti at the end of November, which definitely made things easier, but Joe and I were still doing the bandage changes at night. In December I was blessed with a new job that was just 1 mile from our house, so I didn’t have to make the hour commute anymore. The following semester Joe was able to work his schedule so that he only had class 2 nights a week, so we just skipped bandage changes those nights. It worked out so much easier. By the time we reached Joe’s last semester of class we had life down to a science. Metti started helping with the bandages or I would do them alone, and by the time Joe got home from class we could have a somewhat “normal” life.
At the time people kept asking us how we were balancing it all, and the only answer we could give was, “I don’t know.” If I was asked today how we made it through law school, especially Joe’s first semester back after Ella was born, I would give the same answer, I don’t know. The only explanation is that God provided us with the strength we needed. I used to lay in bed and cry from extreme exhaustion and pray that God would take my few hours of sleep and multiply them so that I could just function the next day. Joe was just as exhausted. I assumed that during the day Ella would sleep and Joe would be able to get a good 2 hours of studying in. Not so. She only slept for 30-45 minute increments and between her naps Joe was feeding her or just taking care of her. Needless to say, studying for law school in 30-45 minute segments isn’t the most productive way to study. Regardless of how it happened, here we are, 4 years later and Joe has a law degree. I couldn’t be more proud of him!
My parents came into town on Sunday May 23rd to spend the week with us and to be here on Friday for Joe’s graduation. Janet (Joe’s mom) came into town Thursday night and Joe’s brother and 2 of his sisters left their homes bright and early on Thursday morning to drive down for the graduation ceremony. It was so great to have family here to celebrate with us! Thankfully we didn’t need tickets for the graduation, so anyone who wanted to come could. That meant that those listed above, along with myself, Metti and Ella all headed to the Basilica of the National Shrine of the Immaculate Conception for the ceremony. Thank heavens Janet got there early and saved seats for all of us, because the place was completely packed!
I was fully prepared to cry through the entire ceremony, but I kept swallowing those lumps in my throat and made it through without any hysterical bawling. Of course after the ceremony when Joe came over to us and I saw him completely decked out in his cap and gown, that’s when I completely lost it! He looked so handsome and I was so proud of him. The sisters (Jenny and Trish) and I decided that when they called Joe’s name we were going to stand up and yell…and boy did we yell. Everyone knew who Joe belonged to! And every time anyone clapped for any reason, whether a speaker, another graduate, or anything else, Ella would clap her hands and say, “Yay daddy!” I must also note that on Friday morning when Ella was getting ready for the graduation, she picked out her very special glitter shoes (chosen by our loyal followers) to wear for the occasion. They are still a bit big, which is why she hasn't been wearing them around, but she knew they were just what she needed for daddy's graduation.
After the ceremony the school put on a wonderful reception. This wasn’t just cookies, cheese and punch. This was a major reception with sandwiches, a mashed potato bar (I had never heard of one but it was so good), pop corn, ice cream, cup cakes, chips, and on and on. We were able to sit together and talk about the day and all the wonderful things that surrounded it. After lunch we headed to our house to relax for the afternoon. Unfortunately we had to say goodbye to Jenny and Trish who had to rush back home, but the rest of us went to dinner to complete the day of celebration.
Saturday morning we woke up early (Joe’s brother, Billy, headed home before the rest of us woke up) and headed to breakfast while the cleaning lady came and cleaned the house for the party (oh how I love Ana!). After breakfast Janet, my mom (Gale) and I headed to the grocery store to get everything for the big celebration. My cousin drove in from Durham, NC to go to the party, and my dad’s cousin and her family all came down from MD to be there. We were really touched by how many people were willing to travel to come celebrate with Joe. The party was a hit and we are so thankful to everyone who made the time to come celebrate with us. (Side Note: It had been a long few days for Ella, so she stayed in her pajamas all day on Sat. Too bad the adorable outfit I bought for the party remained in her closet, but at least her jammies had cupcakes on them.) After the party we were exhausted, so we ordered Chinese food and stayed at home. I think we were all in bed around 9:30 pm.
Janet left Sunday morning and my parents left Monday afternoon. Our house is now quiet and Ella’s days are back to just her and Metti. It was a great weekend! Thanks to everyone for helping make it special. Joe started his bar class last week, so now he’s spending his nights back in class. The good news is that this is only 8 weeks…although all of my lawyer friends have told me that the next 8 weeks I need to be more understanding and forgiving than ever before. Apparently people get very cranky while studying for the bar.
**As I mentioned in my previous post, our internet was down for several weeks and we just got reconnected. I know we are seriously lacking in pictures, so I'll be sure to get some new ones downloaded this weekend. And yes, there are plenty of graduation pictures, although none from the party since I was too busy talking to our guests and not taking pictures.
Tuesday, June 1, 2010
Top 10 excuses for not blogging in 2 weeks
10) Our internet was down from May 10th - May 27th
9) I had to work last Friday night and almost all day on Saturday
8) I was busy cleaning our house and getting ready for company
7) Joe started his barbri class, which means I’ve been adjusting to life as a single parent
6) My parents were in town for a week
5) Joe’s mom, brother (Billy), and 2 of his sisters (Jenny and Trish) were in town
4) I had to prepare for Joe’s graduation party
3) JOE GRADUATED!!! (More on this later)
2) I had so much to say that I couldn’t put it all down in words
1) I need more time in the day
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