Monday, May 26, 2008

My daughter vs. Joe’s daughter

My daughter is the genius who says dog whenever she sees or hears a dog, in person or on TV. Ok so it sounds more like dug, but she gets the point across. My daughter is also the one that dances when any music is played, says uh-oh when she drops something and says yum when she eats a food she likes.

Joe’s daughter is the girl that has started picking her nose.

Saturday, May 24, 2008

Gi Gi Goes Prime Time!

Grandma Gale Alexander ("Gi Gi") was granted a television interview by her local Casper, WY television station to describe her efforts to promote EB awareness in Wyoming.

Check the segment by visiting the feature page of Katie's brother and sister in law's blog at

Tuesday, May 20, 2008

Recap of Cincinnati Trip.

Overrall, the doctor's visits went very well. In general, we did not learn much that we had not already known about little Ella's condition, but we wanted to accomplish two specific goals: establish a relationship with EB-medical experts and have blood drawn from Ella, Katie, and I to have genetic analysis determine the scope of her EB condition as well as where the gene mutation originates. We accomplished both goals.

11 doctors paid Ella a visit and each consulted with us for approx. 20minutes. We sat in a room and each of the 11 docs. came to our room and analyzed Ella's skin and questioned us as to her overrall condition. The docs. included one of the best EB pediatric dermatologists in the country,optomotrists, orthopedist, nutritionist, gastrointologist, pediatricsurgeon, physical therapist, occupational therapist, social worker, psychiatrist, and maybe a few others.
A few of the docs. saw her for just a minute or two and then explained they did not need to comment b/c of how well she is doing (gastro and pediatricsurgeon). All in all, they were pleased with her development, activity level, and overrall nutrition and mood. Many EB babies are behind developmentally, but Ella is right on schedule with her weight, length,crawling, and verbal development. We now have an established record to work with in case any medical symptons develop in the future that require attention instead of starting from a blank slate in terms of who Ella is,what her medical history originally looked like, etc. Plus, the doctors allc ommented on how beautiful of a little gal she is, so they can now not possibly forget who she is:-)

Drawing blood from her was the most difficult visit. It was the only visit where she became, naturally, upset. The lab tech had a difficult time onthe 1st attempt finding a good vein to draw from. To all children, needles are no fun, and Ella let us know it. A 2nd lab tech was called in from the bullpen to successfully find a good vein, which she did, on the top of her left hand. Ella cried the whole time, but alas, the tech drew 7ml of herblood as quick as possible. Subsequently, the tech drew blood from both Katie and I.

This is a very important test. This is the best genetic lab in the US which can procure the test we need to determine the type and subtype of Ella's EB. Though not required to treat and care for Ella, this analysis will help give Katie and I a glimpse as to the severity of her case. Also, it will tell us the likelihood of whether any future children would have EB. We have waited this long to start the process because as I stated, it is not a required test. It makes no difference what the analysis shows in terms of her day to day care. We wanted to have the folks at the EB center in Cincinnati draw her blood instead of a typical blood lab. Hence, the long wait in taking care of this. Now that we have the ball rolling, we will wait anywhere from three to six months for results.

We were glad we made the trip! VA Medicaid paid for it in its entirety including the costs of two direct flight airline tix, lodging for 4 nights, rental car, and per diem food costs. According to the Commonwealth, EB is considered a disability, and b/c of such, VA medicaid assists family's with the costs of medically necessary activities which is great. I am not a fan of big government programs, but I must admit that my beliefs about tax-payer funded medical programs has dramatically changed since Ella's birth.

In addition to the medical component of the trip, we had an absolute ball in Cincinnati and Indianapolis with my sister Maureen and her husband and daughters Alice and Edie. We were able to visit the Cincinnati Zoo, see a Reds-Indians MLB game at Great American Ball Park (thanks to Tom Zumbiel hooking us up with sweet tix), and bro-in-law Dan took me to my first Indy Car series racing event at the Indy 500 track. Of course, we ate like champs all weekend at thanks to Maureen and Dan's grill. Edie's baptism on Sunday was a beautiful event. We were so glad to be able to witness her big event. Both she and Alice are so adorable!

Tuesday, May 13, 2008

Cincinnati, Here We Come!!!

Tomorrow we head to Cincinnati to take Ella to the Children’s Hospital EB center. She will be evaluated by 11 specialists ranging from dermatology, orthopedics, PT, OT, etc. While we wish we didn’t have to make this trip, we are excited to get her seen by an expert group of doctors who have seen a lot of EB kids before. Don’t get me wrong, we are so lucky to live in VA and have access to an incredible pediatrician and outstanding dermatologist who have worked with EB kids before. Every time we go to see one of Ella’s doctors we are reminded how blessed we are. But it will be good to be in a setting especially geared toward people with EB, and have an entire team of doctors who can give us guidelines on how best to care for her.

Please pray for us while we are there. Pray for safe travel, as well as a good visit…and that Ella won’t have a melt down during the day. She tends to not eat very well when she’s in a new place and around new people, so I am afraid that she will be so distracted by all of the doctors that she won’t eat, which will surely result in a melt down. And potentially she won’t get a good nap, which will just add to the melt down. Ella is a good baby and typically does well around new people and places, but she is an 11 month old, so getting out of her comfort zone for more than a few hours can be risky.

You will all be pleased to know that Ella has made peace with her sippy cup. Being a new mom, I went out and bought 3 different kinds of sippy cups at around $5 a pop (those things are expensive). She hated 2 of them, and would reluctantly take the other one, but never really grasped what it was all about. Before Ella was born a friend of ours from church (a mom of 3) gave us some sippy cups with a note that said something like “We love these!” I, of course, put them in the closet to use at a later date. But last week, after Ella was still not really into her sippy cup, I decided to pull them out and see how they worked. After all, this is a mom of 3 so she probably knows what she’s talking about. I think it took about 3 minutes and Ella was all over her new sippy cup. She figured out how to hold it so the spout would go into her mouth, and she loved looking at the water inside. She LOVES this sippy cup. Of course they are “Take and Toss” and cost about $4 for 5 of them. Why did I spend all this money on the expensive ones when all it was going to take was this cheap cup? The best part about these is that they don’t have that stupid plastic valve thing in them to monitor the water flow. I think that was what confused Ella the most. Anyway, thanks to Barbara Elliff for the sippy cups.

Due to our trip this will probably be the last post for a few days. While we’re in Cincinnati we are going to see Joe’s sister, Mo (Maureen) and her family in Indianapolis. We will also be able to attend Joe’s niece’s baptism. We also hope that we will have time to visit the zoo and of course Joe is going to see about going to a Reds game. It will be a good trip.

Sunday, May 11, 2008

Happy Mother's Day

Well, its my first official Mother's Day and so far things are going great. On Friday Joe had a dozen roses sent to me (they won't deliver on Sunday) along with a balloon and a box of chocolates. The roses are multicolored and they are beautiful! Then last night Joe fixed us a nice dinner of steaks and spinach, two of my favorite things. Last night Ella actually slept most of the night, so that was a gift in itself. She only woke up once at midnight, and that's much better than 3 am. We decided that Ella has a cold, which is why she wasn't sleeping through the night. Friday I developed a sore throat and runny nose, and if Ella felt as yucky as I did yesterday, then no wonder she isn't sleeping. She had a slight fever and a runny/stuffy nose. She seems to be feeling much better today, and hopefully once she gets to feeling better the sleeping will continue to improve.

This morning we went to church and got to see Ginny dedicated. Ginny (Virginia Lee Grubs) and Ella are best least that's what Christy and I have decided. They always just stare each other down and eventually grab hands. It's so sweet.

The best part of Mother's Day was during church when Ella would stick out her hand and I would kiss it, then she would laugh. I didn't want to disrupt church, so I only did it twice then turned to listen to the sermon in hopes that she would be quiet. She put her little hand on my arm and said "Ma Ma" to get my attention! She knows I'm her Ma Ma! They say that until a kid is about 10 months to a year old, all the babbling is just that...babbling. It doesn't really mean much. And somewhere in there they figure out that all those letters actually mean something. Today it was like she figured out that I am Ma Ma. It was so sweet.

After church we went to Ginny's house for lunch. It was pretty funny because it was Christy's family, Casey's family, and us. I guess it's like we're family. After all, we are taking vacation together this summer. It was a delicious lunch and Ella did great at both church and lunch.

Thursday, May 8, 2008

What happened?

Ella was rockin' with the sleeping bit. She was doing so well for so long! When her teeth started coming in she would wake up maybe once but would go back to sleep in just a minute or 2. But all of a sudden this week she has decided not to sleep for more than 4 hours. The past 2 nights we were glad to get 2 hours! What went wrong? We have been trying to think if we have done anything differently, but we haven't. The weather has changed and is getting warmer, so we did leave the window open one night. We were convinced that was the problem, so we closed it last night. It didn't help. Now what do we do? Hopefully this no sleeping thing will be short-lived and she'll be back to normal tonight.

Other than that Ella is doing great. She's crawling every where and is starting to explore the possibility of pulling herself up. She will pull up on low things, and desperately wants to see what's going on on top of the couches and ottoman, but she hasn't braved those yet. I know it's just around the corner.

Grammy Janet came to visit for a couple of days, and Ella had a lot of fun with her. She would sit in Grammy's lap and just look up at her. Then Grammy would do this little rhyme thing, I don't remember the words, but Ella loved it. It was nice having her here.

Joe finishes his finals today! 2 years down...2 to go. We are officially half way there! He is doing such a great job and I am so proud of him.

Saturday, May 3, 2008


We have had so much going on the past week that there hasn't been a spare minute to update the blog. To start off, last Sunday (April 27) we participated in the Washington, DC March of Dimes March for Babies. We didn't actually DO the walk, but we supported the cause and went to the opening event. As we were walking up this mom and her little girl (probably about 8) walked past us. Like every little girl, she just had to see the baby. In all sincerity she asked "What's wrong with her skin" to which I gave the standard line, "She has sensitive skin." The little girl looked at me and said, "That's why we're here. To help babies like her." I almost lost it! We we were walking around we learned that Team Joella isn't as original as we thought. Maybe the Joella part is, but not the "Team" followed by your kids name. We saw Team Mia, Team Christoper, etc. We also got to catch up with 2 of Ella's nurses from the NICU. It was so great to see Meghan and Clarissa and hear how they are all doing. And we of course got to show off how well Ella is doing.

This week was followed by an conference for my work. The American Diabetes Association hosts Call to Congress every 2 years. During the conference I met a woman from PA that had actually known a family who had a kid with EB. This is the first person I had met outside of the EB community. Also, while I was there I had the opportunity to hear the stories of parents who have kids with Type 1 diabetes. For the first time since Ella was born I felt like I met parents who were kindred spirits. It's a different disease...but similar issues. I felt like I met others who actually understand what its like to live with something day after day, never letting your kids out of your sight, and wondering what it would be like for just 1 hour to not have to worry about every move your kid makes. It was a good conference all in all, but I think it was really good for me personally.

And finally...I'm officially in my 30's. Until yesterday I was able to say that I was just 30, but now I'm 31, which means that I'm in my 30's. So far I don't feel any different, but Joe says I sound more mature. Joe took me out to lunch at a Japanese hibachi steak house just down the street. It's one of our favorites, but we're afraid to take Ella so we haven't been since she was born. Then my co-workers and I went out for birthday drinks at a Tapas place in Crystal City. When I got home from work Joe had made me my favorite birthday cake, strawberry cake with strawberry frosting. He makes a cake for me every year and does a terrific job! Joe asked me a couple of weeks ago what I wanted to do for my birthday and I told him that I wanted to go to a movie in a theatre...again, something we haven't done since Ella was born. So last night we went and saw "Baby Mama." I thought it was hysterical! And after the movie we went to dinner at a fancy French restaurant. It was a great birthday!