Saturday, October 31, 2009


I am the mom of a 2 year old...2 year olds are impossible to keep still for pictures, they just don't get the concept. That's why every picture in the new October 2009 folder is of Ella walking toward me or walking away from me. The girl is on the move and she isn't stopping for anyone...not even for a picture for her mom.

Wednesday, October 28, 2009


You may know that Debra has a New Family Advocate program to help families that have new EB babies. This program was such a help to us and I know it has been beneficial to other EB families.

Well, on Thursday I got a call from Leslie with the New Family Advocate program and she said that there was a new EB baby born in Sterling, VA, just about 30 miles from us. I called the family and was able to go out and meet with them on Sunday afternoon.

For a little bit of background, this is the third child for the couple…it is also their third child with EB. The couple is from Pakistan and unfortunately the hospital in Pakistan didn’t have the means to properly care for a child with EB, and the first two passed away at 8 weeks and 2 weeks respectively. With the third child they are very thankful to be here in the US where they have better medical care and doctors that understand the disease. They have been seeing the same dermatologist that Ella sees.

I went to meet the family at their home on Sunday afternoon. Their sweet little girl is so tiny! I took a box full of supplies that we use on Ella. They had been using what the hospital gave them, and while it’s fine for what hospitals usually use it for, it isn’t good for EB kids. I was able to talk with the family and tell them all about Ella. I took tons and tons of pictures with me so that they could see Ella when she was born and then see her now as a big 2 year old. I bragged a lot (I’m a mom…it’s my job to brag) and told them all about Ella and how smart she is and how active she is.

The whole family came over to meet me. The baby’s grandmother, and 6 cousins were all there with the baby and her parents. They fixed a wonderful lunch! They said “I hope you like spicy food!” Then laughed…that should have clued me in. Luckily I do like spicy food so I enjoyed the meal. They even gave me left-overs to bring home to Joe and he loved them too! Maybe I need to learn to make Pakistani food.

After our meal all the women went upstairs so I could show them how to protect the baby’s wounds. The mom of the baby, her mother-in-law and her 2 cousins have been doing every thing they can to take care of the baby, and they all wanted to see the wound care so that they could help. They said it was really helpful and kept calling me a professional. I told them that I’m just a mom who has lived with the disease for 2 years. Soon, they’ll be professionals too. They were the most excited about the new wound products I took them. I remember when we got a box of wound care supplies from Debra shortly after Ella was born. The new stuff seemed so revolutionary to me! Compared to the stuff we had been using from the hospital, the new things were incredible! This family felt the same way. I had forgotten how difficult it is to change bandages on a newborn baby. Ella definitely fights us, but she will at least straighten her legs. Little 2 week old babies just want to stay curled up in a ball.

After the bandages were done we headed downstairs for dessert and tea…yummy Baklava and this other dessert that they described as “sugar that has been fried.” I’m sure it was VERY healthy. Of course I spilled the tea all down the front of my shirt. Oh well.

I am so glad that I was able to go and meet with this family. I remember vividly how scary the first few months with Ella were, and I hope that by meeting with the family I was able to give them some hope.

Please keep this family in your prayers as they start a new journey. Specifically, pray for the baby’s bottom. It is her most severe part and diapers are very hard for her to wear. They had a biopsy done on Monday and are awaiting the results.

Monday, October 26, 2009

Fun weekend, and yes…more trains

Saturday morning we woke up bright and early to head to Fairfax County for a special “Ghost Train!” Oooh, very scary! Unfortunately, when we got there the rain and wind had closed the ride. We met up with the Grubbs and ended up going to Landmark Mall to walk around. The primary reason we even chose Landmark Mall is because it usually has a little choo choo train that rides around. However, the last 2 times we’ve been the train hasn’t been running. So Ella and Ginny had to settle for some quarters and a mechanical car, motorcycle, rocket ship and some weird blue thing.

I have to add a little side note…Shortly before Joe and I got married my cousin Lindy gave me some old silverware that they had in their guest house in California (they now live in NC). It’s not too fancy, but nice (Oneida) and definitely worked. So when Joe and I got married we got new fancy silverware, but we also decided to buy more sets of the stuff I currently had to use for every day. This is going somewhere, I promise. When we bought the additional sets I searched all over for ice tea spoons…you know, the ones with really long handles so that when you stir the sugar in your ice tea you don’t get your fingers all in the drink. I had no luck finding the spoons, so we just continued to use regular spoons or knives (since they have a long handle). Well, Saturday Christy and I were strolling through the dollar store and what did I find…yes, a box of 4 ice tea spoons that perfectly match the silverware we have! So I did what anyone would do and bought 2 boxes…for $1 each box! I was so excited!

Now, back to our story. So we walked the mall and went to the dollar store and as we were leaving our smart daughter realized that she never got to ride the choo choo like she had been promised. This is where being a parent is hard. We had told her that we were going to ride a choo choo, and through no fault of our own we were unable to follow through on that promise. I don’t want to lie to Ella and it made me sad that she didn’t get to do what we had promised her, mainly because she doesn’t understand that the weather didn’t allow it or the train wasn’t running at the mall. All she knew was that mommy and daddy had told her we were going to ride a train and we didn’t. So sad! So we dropped Joe off at the house to start studying (have I mentioned that he only has about 5 weeks left of class) and Ella and I went to the metro. We rode from King street out to Huntington, then all the way back to Reagan Airport, then back to King street. She was happy and I felt like a good mom.

Saturday night our electricity went out. It was fine until the sun went down, then Ella decided she didn’t like the dark and anytime Joe or I left the room she would whine (notice that I said whine and not cry…she’s becoming a very good whiner). It was out for about 3 hours (maybe longer…I lost track of time) so we ordered some yummy pizza! Valentino’s makes everything better. Half way through our dinner the lights came back on. I'm so glad the electricity wasn't out for longer. I had terrible images of all the stuff in our freezer going bad.

This is getting really long and I have a lot to say about Sunday, so I’ll save that for another post. Have a good Monday!

Wednesday, October 21, 2009

I am SO lucky!!!

I married in to an incredible family! When Joe and I were dating and I learned more and more about his family, I knew that they were incredible for so many reasons. And as time has progressed I’ve learned that they are even more incredible than I originally thought. But this weekend, they proved that they are even MORE incredible than that!!! Now that’s incredible!!!

On Sunday morning at 7 am, in the pouring rain and freezing wind, 4 of Joe’s sisters and 1 cousin stood outside waiting to run the Amica Half Marathon as “Team Joella.” Several months ago the sisters got together and decided that they wanted to raise awareness for EB and raise money for Debra. So they started training. They already pull off the amazing feat of balancing family and work, but in the mix they somehow found time to train to run 13.1 miles.

From the beginning Joe and I were touched and amazed at their devotion. They had weekly conference calls to touch base on training. They created and printed little cards with a picture of a butterfly on the front and on the back there was a picture of Ella and information about EB. A card was put into every bag that was given to the runners. They had shirts made that said Team Joella in black and purple. They flew to Providence, RI from all over the country at their own expense. They used vacation days and cashed in big favors from all the husbands (who stayed home and took care of the kids). They endured stress fractures, tendonitis, and blood, sweat and tears for this race.

To say the weather was terrible would be an understatement. In fact, on the race website they had this statement, “In some of the worst imaginable running conditions, over 2,500 runners finished this year’s Amica Marathon, UnitedHealthcare Half Marathon, and Team Relay. The perseverance of all runners, volunteers and fans was truly admirable.” It was miserable weather. It was windy with pouring rain all day. The cheerleaders (myself included) were soaked and freezing, so I know the runners were too. Yet even in the rain, they proudly displayed their black Team Joella shirts and completed the half marathon.

The cheerleaders (Jenny, Sandra, Katie, Aunt Sue, Meghan (Jenny's daughter and our niece) and I) connected with the runners (Ellen, Sue, Trish, Mo and Kristin) at mile 7. We waited in the rain for about 30 minutes cheering on all the other runners. While some were completely focused and couldn’t care two licks about us being there, others waved back and seemed glad to have people cheering them on. We were standing there cheering and suddenly we saw Kristin, Joe’s cousin. We cheered her on and tried to snap a few photos, but that girl isn’t new to running marathons, so she was too fast for us. Soon the 4 sisters came around the corner. We saw the black shirts with the purple writing and knew it was Team Joella. Of course we all screamed and cheered. They ran over to us and stopped long enough for a group picture. I, of course, cried. I’m a crier…I can’t help it….it’s my spiritual gift.

After we connected with the team, we piled our soaking selves back into the car and headed to the end of the race. Katie (Joe’s sister…not to be confused with ME) and I made our way to the end of the race where we waited for the 4 sisters to arrive. This is where we connected with Janet who had left NJ at 4 am to meet us at the race. Every so often I’d see someone cross the finish line and they had that look of accomplishment on their face, then I’d think about my sisters-in-law (sister-in-laws?) and cousin and how awesome they all are…and I’d cry. Then I’d pull myself together, and someone else would cross the finish line and it started all over again. The sisters crossed the finish line standing in a line and holding hands. It was awesome! I burst into tears…what can I say.

The weekend was so much fun! With such a big family, it’s rare that we all can get together, so the Murray girls weekends are the best! I think we need to make it an annual event…although we don’t always have to include a half marathon in the mix.

Here are all my Thank Yous (in birth order):

Jenny: Thanks for driving all the way from NJ and for driving the rest of us all over a strange town.

Sandra: Thanks for coming with Jenny and leaving your kids to endure a night of poker and for sharing a bed with me…I hope I didn’t snore.

Ellen: Thanks for arranging everything and for coming all the way from CA to join us and for picking me up at the airport.

Mo: Thanks for pushing through your tendonitis (I think that’s what you have) and for sharing a bed with me…I hope I didn’t kick you.

Sue: Thanks for treking all the way from CO and coming back after a brief hiatus to finish strong.

Katie: Thanks for laughing hysterically with me the night before the race and for ringing the cow bell even though your arms got tired.

Trish: Thanks for being a great hostess and for making us dinner and breakfast and for listening to me cry. (I have to put in a very special thanks to Phil, Trish’s boyfriend, for putting up with all of us all weekend and driving us all over creation. Not a lot of guys could have done what he did.)

Meghan: Thanks for showing us all your fun dances and for making great posters to cheer the sisters on…P.S. Stop growing up so fast.

Kristen: Thanks for stepping in at the eleventh hour to run and for keeping me company at the airport.

Aunt Sue: Thanks for being a great cheerleading partner and for giving me a glimpse at Grandma Rose.

Janet: Thanks for raising the most amazing 8 kids that I have ever met! Then again, I shouldn’t be surprised…they have an amazing example to follow.

I also have to give a special thanks to all the husbands who spent the past 3 months putting up with their wives training, buying new shoes and running clothes, and for taking care of the house/kids/dogs/etc while we were away having a ton of fun.

And of course I have to thank my wonderful husband for taking care of Stinkerella while I was out having fun with his family.

And I can't forget to thank Ella for being an amazing little girl.

See…I told you they were incredible.

Monday, October 5, 2009

Another weekend with the trains

We had a great weekend together. Friday night Aunt Beck came over and the 4 of us headed to King Street to take the trolley (choo choo train) into Old Town. This is becoming a weekend tradition. While there we were able to walk around a bit and grab some yummy dinner. I LOVE fish and chips…I may have mentioned it before. And if we ever go to a sea food restaurant, that’s usually what I get. Maybe the occasional crab cake, but mostly I stick with the fish and chips. It was delicious! Joe got lobster…what was he thinking?

Saturday was Ella and Mommy day. We had a lazy morning then went to the park with Francesca. Ella had a lot of fun running around on the stage, playing ball and going down the slide. That night Joe headed out with some friends, so Ella and I headed to the greatest place on earth…Target. My main motivation for going was to get Ella out of the house and to pick up some little fruit strips that Ella likes to eat. When we checked out the woman didn’t make me sign the receipt, so I asked her, “I don’t have to sign anything?” “No,” she said, “only if you spend over $50.” Well…I guess we all know how often I go to Target and spend under $50.

I did boo boos by myself on Saturday night. I have done boo boos alone numerous times. It’s not my preference, but it’s doable and Ella usually cooperates. Unfortunately, Saturday night was not one of those times. They were a complete disaster. The bigger she gets, the faster, stronger and quicker she gets. One second she’s holding onto her bottle and the next second she’s pulled off her leg covering and is scratching her shin. I only have 2 hands and do not have the coordination needed to hold down 2 arms and one leg while I wrap the other leg. There were several times I was almost in tears because she just doesn’t understand that she has to stop scratching. It breaks my heart! Needless to say, I’m not going to attempt that again. It’s just not worth the damage she does to herself.

Sunday morning Ella woke up very happy to see her Daddy again. She begged him to take her back to see the choo choos, so in the car they went. Ella was quite a sight to behold…she was still in her pink flower jammies and had her jacket on and her socks with rubber bottoms and her hair was a complete disaster. Luckily she was also wearing her Mets hat, so her hair was covered up. She didn’t care what she looked like...oh to have that confidence. After an hour or so, Joe called to tell me that they were riding the choo choo (trolley) and Ella was having a wonderful time. He also said they’d be home in about an hour. This was some great down time for me. I got a full shower…not one of those speed showers that all moms do. And I got to clean up the house a bit and pack up some of Ella’s old baby toys that she doesn’t play with anymore. After about 2 hours there still wasn’t any sign of Joe and Ella. I knew they were having a great time, but I also knew that Ella was going to be hungry, which results in a very cranky girl. Around 2:00 the van pulled up and Ella and Joe were both happy as could be. They had a wonderful daddy and daughter day of taking the trolley down to Old Town then stopping off for some pizza, carrots and iced tea (nice combination). Joe said that they found a pizza buffet and Ella ate 1 ½ slices of pizza by herself and a whole bowl of carrot gratings from the salad bar. Honestly, I think Joe had as much fun as Ella did.

Sunday night Grammy Janet came to visit. She brought some wonderful stuff that I’ll post about later. It’s always fun to have Grammy Janet.