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.
Monday, March 30, 2009
A new favorite
Last night I was exhausted and was laying on the couch while Joe and Ella watched “Weerry.” Ella kept coming over to me and giving me kisses. It was so sweet! She would come really close then bend over (sticking out her little bottom) and kiss me right on the lips. Then she would go back to watching Larry. This happened about 5 or 6 times and I loved it every time!
The Murray’s had a very busy weekend. Friday night we had our neighbors, Joe and BJ, over for Friday night pizza. They are original owners of their townhouse so they know all the gossip on the block. We didn’t ask them over to find out the gossip though, we just wanted to hang out.
Saturday night we had a Meet and Greet for 3 candidates for the City of Alexandria City Council. It was a good event and we had a good turnout. The best part was that I didn’t have to clean the house to get ready for it! A few months ago Joe got me a present…he hired a maid! I love her! With me working full time, Joe working and being in school, and having Ella we just didn’t have time to keep the house as clean as we like it. So, Ana came into our lives! The best part of Saturday was that our entire house got cleaned (floors swept and mopped, bathrooms scrubbed, kitchen cleaned, baseboards wiped down, clean sheets on all the beds, they even dust the corners of the ceiling) and I just had to stay in the basement and play with Ella and Joe. We got family bonding while someone else cleaned. I know it costs money, but for us it is worth every cent!
Sunday morning we went to church and while Ella was still shy, she wasn’t as shy as she usually is. This gave us hope that maybe she is starting to break out of this shyness phase. Since we had beautiful weather on Sunday we took Ella for a nice long walk all through the neighborhood (I got around 5,000 steps…have I mentioned that I’m obsessed with my pedometer). And Sunday night we had our good friends, the Grubbs, over for dinner. We had to start planning the 2009 MurrGrubbs vacation (oh yes, there will be t-shirts) and Christy and I had to start planning our mom’s night out.
It was a nice and busy weekend, but now we’re back to the old grind.
Monday, March 23, 2009
Panic!!!
Panic #2 occurred on Saturday when Ella skipped her nap. This has been happening a lot lately and it really makes me afraid that the joyous times of nap and silence will soon be over. I am not looking forward to the days of no nap. I think I need that 3 hour break more than she does! I thought kids were 3 or 4 before they stopped taking naps! What’s up with my kid stopping them at almost 2?
Finally, my third time of panic happened Sunday afternoon while Ella and I were on our way to Target. We were stopped at a stop light and I looked in the mirror to make sure everything was in place…you know you do it too. And there is was…I found my first gray hair! Complete and utter panic! I’m only 31 (almost 32) and way too young to have gray hair! Since I was a kid I’ve been crossing my fingers for the Alexander hair genes. No, not the ones that made my dad and brother go bald at very young age. The hair genes that have given my grandmother her beautiful salt-and-pepper look…even at 80! It took all of my strength not to visit the Miss Clairol aisle at Target. I plucked the hair and closely examined it to see if it was in fact gray, or just a blond hair that was just a bit lighter than all of my other hairs. I haven’t revisited the gray hair area to see if there are any more. I’m trying to convince myself that it was just blond. In this case, denial is the best medicine.
Thursday, March 19, 2009
You know you’re a parent when…
You wake up in the morning singing Elmo, Barney, Blue Clues, or another one of your child’s favorite songs.
You have a secret crush on Joe from Blues Clues (Shhh…don’t tell my husband)
You can sit around with your other parent friends and discuss your child’s bodily functions without ever batting an eye.
It doesn’t bother you to bare-hand a booger.
You try to find new and exciting ways to get your child to do something they hate. “Ooooh, we haven’t changed your diaper in mom and dad’s room! Won’t that be fun?”
You develop the incredible skill of being able to tune out whining, crying and screaming and just ignore it and go about your business.
You find yourself doing and saying things your parents did and said even though you vowed you wouldn’t.
It is way more important for your kid to have cute clothes and look good, than it is for you to wear the latest fashions.
You have a snack in your purse at all times. (This was proven when I was at a work event and a girl with diabetes started to have a low-blood sugar. I was able to offer her honey-nut cheerios, a granola bar, Smarties and a lollie pop).
All thoughts of being “cool” are thrown out the window and thoughts of practicality replace them. (Why else would so many parents drive a minivan?)
Friday, March 13, 2009
Tired Girl
Wednesday, March 11, 2009
On April 11 Leslie Rader will be hosting a Fashion Show to raise money for her New Family Advocate program. As a side note, Leslie came to visit us shortly after Ella was born. She brought us several EB friendly items and gave us pointers on changing Ella’s bandages, diaper and other struggles we were having at the time. She spent an entire day with us answering our questions, talking about the future may hold and showing us the best way to care for Ella.
The next event will take place on April 23, 2009 at Park Tavern in Midtown in Atlanta, GA. The money raised at this event will benefit the Dystrophic Epidermolysis Bullosa Research Association of America (DebRA). You can visit the link below for more information.
http://www.butterflywishesforellie.com/
A side note on this event, Ellie’s dad was the first person we met in the EB community. He happens to come to DC a lot for work and had been talking to a mutual friend about his daughter and her skin disease. So when Ella was born our mutual friend called to let us know about Andrew and his daughter. Much to our appreciation, Andrew happened to be coming into town that week for work. He met us at the hospital and came in to meet Ella. He gave us some great pointers on what they used on Ellie that seemed to help. He then came over for dinner and served as an incredible comfort in a very confusing time. He also helped point us to the wonderful EB support network that I have found to be invaluable! Andrew, his wife Shawn, and Ellie have become wonderful friends and have been so helpful with advice on everything from preschool to future children.
As you can see, both of these events are close to our hearts. If you live in the Louisville, KY area or the Atlanta, GA area please earnestly consider supporting these events.
Monday, March 9, 2009
Weekend Recap
Saturday morning I was really hoping that Ella would sleep in and give me some much needed rest, but no, that wasn’t going to happen. Joe got up to go hunting around 6 am and of course Ella got up with him. I was able to keep her in her crib until 7 (thanks to our portable DVD player and her Blues Clues video), and all along I was praying that she’d drift back to sleep. But at 7 the battery on the DVD player had run out and she was ready to get up and party! With Joe gone for the morning that meant that I was up too. When we finally got dressed I just grabbed an outfit from her closet and put it on her without going outside. The outfit was long-sleeved and shortly after getting her dressed I went outside and realized that the poor girl was going to burn up in long-sleeves, so I changed her clothes. The weather all weekend was beautiful!
Saturday afternoon Aunt Katie, Uncle Jarrod and Cousin Andrew all came for a visit. Ella was her typical shy self. I know that as they grow up she and Andrew will have so much fun playing together! It was funny because when we left the house for dinner, as soon as we got in the car Ella started asking for Andrew. Then we got to the restaurant she was shy again, and once more when we got back in the car to go home she was asking for Andrew. Sunday morning we went to church and were able to introduce all of our friends to the ORIGINAL Katie Murray…I’m the new version (although not necessarily improved…I think we’re equally awesome).
As a little side note (which I may or may not have told on this blog before…if so just bear with me), my mom’s name is Gale and her brother, my uncle, married a Gail. My whole life I thought it was so weird that my uncle would marry a woman with the same name as his sister and that his sister was Gale Gooch, but now his wife is Gail Gooch. Of course just because God has a really good sense of humor he would have me marry a man with a sister named Katie so now I’m the other Katie Murray.
After a quick lunch, Katie, Jarrod and Andrew had to head back home. It was great spending time with them and we already have a trip planned in June to take the kids to Sesame Place (and we’re hoping more Murray’s can join us). Now that will be fun!!!
Sunday afternoon the weather was just too nice to ignore, so we came home and changed clothes to head to Fort Ward Park. We met up with our friend from church, Darla, and she and Joe threw the softball around while Ella and I went for a nice walk. After our walk we sat in the grass and watched Joe and Darla throw the ball, and Ella even got to throw the ball into Daddy’s glove…which she loved doing! It was a great day to be outside!
Of course in the midst of it all, Joe and I both caught colds…and given that Ella didn’t sleep much last night we are thinking she caught one too. Hopefully we will all recover quickly.
Friday, March 6, 2009
Ella's Random Things
1) Ella snores…loud. Sometimes it’s so loud that we can hear it all the way in our room.
2) Ella gets really bad bed-head. Her hair is completely nuts, especially in the morning. I try to control it with clips and bows, but sometimes there just isn’t much that can be done, especially in the back where it all just frizzes out.
3) Ella likes her saline nasal spray. She calls it “boogies” and she asks me to take the cap off so she can hold it up to her nose and inhale.
4) Ella can’t say the letter “L.” She is great on all the other letters, but when she says her name it sounds like “Ehna.”
5) Ella loves to sing and loves music. She especially loves Twinkle Twinkle Little Star and The Itsy Bitsy Spider. I try to sing her at least one hymn a night so that she can start to learn those at a young age.
6) Ella will eat anything that has tomato sauce or ketchup. Last night I wanted her to eat her cheese ravioli (that didn’t have pasta sauce because she only gets pasta sauce on bath nights), so I gave her some ketchup to dip it in. She ate almost the whole bowl.
7) Ella is extremely shy. Honestly, it worries me a bit, especially since Joe and I are the least shy people I know. I just keep telling myself that someday she’ll come out of her shell.
8) Although she is really shy, Ella loves going out to eat and to the store and other public places. She’s even fine at church until someone comes up and acknowledges her. I think it’s because no one is talking directly to her at these venues.
9) Ella actively participates in her shows. When Dora or Diego ask her a question, she gives them an answer…and she’s usually right! Or, she’ll go to the TV and point to what they are talking about. And in Blues Clues she loves yelling out “A Clue, A Clue!!!”
10) Ella won’t sit still so her mom can take pictures of her. It gets really frustrating to have all of the pictures of her either walking to me or running away.
Tuesday, March 3, 2009
Snow Day!!!
GiGi came back this weekend to hang out. We took her to Valentino’s for Friday night pizza, and Saturday she went with Ella and me to Target to pick up a few things, mainly we got the Elmo Potty Time video. Sunday we went to church and then to Fuddruckers for lunch. Ella loved playing with GiGi! They played cards with my Elvis cards, and Ella would put all the 2’s in one pile and the 4’s in a separate pile, and so on. They also loved blowing kisses to each other and passing kisses through doggie. GiGi left on Sunday afternoon and luckily her plane left just in time to miss the snow. It was so much fun having her visit and we can’t wait until both GiGi and Paw Paw come back in a few months!
As far as potty training goes, I realize that it is way too soon to start potty training, but I at least want to start getting the thought in Ella’s head. This weekend she learned what a potty is and when you ask her where the potty is she’ll point to it. The Elmo video is hysterical! They have this whole section where they talk about the different names for going potty and every time I watch it I totally crack up! Who says wee wee and woo woo? That’s just crazy.
I hate to end on a sad note, but last July I asked you all to pray for a new EB baby in Florida. Unfortunately this little guy had quite the battle and he put up a good fight. This morning he went home to be with his heavenly father where his skin is perfect and flawless. Please keep Jameson’s family in your prayers as they deal with this loss.