Tuesday, September 30, 2008

Lots of Praises!!!

Ella had a check up this morning with her pediatrician, and we have so much to praise God for! She is doing great and the doctor is very impressed with her development. The first thing the doctor said was that Ella’s skin looked the best she has ever seen it look! Sometimes Joe and I get so focused on making sure her blisters are popped and that anything open is wrapped and infection free, that we forget how far she has come. It is always nice to hear from an outside source how good she looks. Ella was holding a pen and drawing, and the doctor said that she has great fine motor skills. Ella was also talking up a storm, and the doctor was impressed with how many words she says at such a young age (17 words). She was able to look at the picture on the wall and say “quack quack” because she knew it was a duck. I don’t know if I’ve told you or not, but Ella is a genius.

As far as her weight, Ella has gained 3 pounds since her 12 month visit! This is such great news! And she has grown 1 inch in length. Ella LOVES macaroni and cheese, Spaghetti O’s and Yo Baby yogurt, which are all high fat foods, so this has definitely helped in the weight department. At least she loves her veggies too. Last night all she wanted for dinner was corn. I figured that since she ate an entire container of Spaghetti O’s for lunch, then corn was probably a good dinner. She also had yogurt for dessert.

The best news we received was that Ella’s iron levels have gone up! She has been anemic since May and we have had her on iron supplements and increasing her iron fortified foods (I’m so glad she loves Cheerios). A lot of EB kids struggle with anemia, and long periods of anemia can lead to a host of other health problems. The average iron level for “normal” kids Ella’s age is 11. In May Ella was at 9, and in June she was 9.2. Today when they checked her levels she was at 10.8!!! WOO HOO!!! This is such a huge praise for us! We will still be giving her iron supplements, but we are so glad that her iron levels are almost average.

She did get one shot, which was a bummer. Hopefully she’ll recover well and not have any side-effects. All in all, this was the best pediatrician visit yet. We love Ella’s pediatrician! She is always very open to our ideas and fully hears our concerns. Whenever we’ve had something come up with Ella she doesn’t come across as critical, but just gives us ideas for things we can do to help. The best is that she recognizes that Ella’s EB is rare and really lets us take the lead as far as knowing what she needs. She has never come across as the “know-it-all” doctor who tries to tell us what to do, but listens to the ideas and suggestions that I get from other EB parents, since she knows that we are the ones who deal with this every day. We are really blessed to have found her.

Ella's sleeping has also been much better the past couple of days. We have started giving her baths in Epsom Salt, which I hear helps with itching. We have also been trying a new concoction on her boo boos. Last night was a great night, so hopefully it will keep up.

Friday, September 26, 2008

One of “those” weeks

Apparently the Murray family (at least the Alexandria, VA Murray’s) is having one of “those” weeks. Before I explain, let me first thank everyone for the phone calls, email and prayers this week. We appreciate all of the support! Ella’s hand is on its way to healing. She is still very gentle with it and won’t crawl with it, but it looks like its getting better and should be back to normal soon. And Ella has been sleeping better. She’s only been waking up once or twice a night, which is a big improvement to the 4, 5 or more times she was getting up. We've changed things up and are trying some new stuff on her boo boos and in her bath water, so hopefully that will help with the itching.

So now to the completion of the Murray week. Yesterday afternoon I went to a convention for work. I was only there a few hours, but I managed to find some fun freebies that I thought Ella would like, as well as some nice stress balls to add to my collection at work. Not that I’m a high stress person, but when I was on the hill we always had lobbyists bring them to us, so it just kind of escalated into this collection. After the convention I needed to run to Babies R Us to pick up a couple of things. I was inside for 15 minutes when they paged “the owner of a green Toyota Corolla.” I thought someone had probably accidentally hit my car when parking or leaving. Oh no, someone had broken into my car! My first thought was, surely it’s another car, one nicer than mine. Why would someone break into my car? Allow me to clarify…I drive a 1999 green Toyota Corolla. The front bumper is cracked, it has a huge dent in the side and the paint is scratched all over. Needless to say, mine is not a car that someone would typically look in for “loot.” Apparently, however, they looked in the floorboard of my passenger seat and saw the bags that I got at the convention that afternoon and decided that they wanted them. The bad news is that once they broke my window and grabbed the bags, they also saw my GPS which was hidden under the bags, and they took that too. So minus a bunch of free junk, they got away with a really nice GPS.

Luckily we have insurance and by 10 am this morning my car window was fixed. We should be able to get a new GPS soon, so there wasn’t any permanent damage. It was just more of an inconvenience. Joe, being the wonderful and protective husband that he is, came right to the store to make sure I was ok and that everything was taken care of. He made friends with the cops (are you surprised) and he even let me drive the minivan home and he drove home in my car in the rain (it rained all night). When we got home he stood out in the rain and covered my window with a gabage bag. What a good husband.

The trip to the store did bring about a couple of good purchases for Ella. She got a new Elmo sippy cup that she LOVES!!! When I showed it to her she took it and cuddled it, just like she does her Elmo doll. She also got a new Elmo shirt.

To add a couple of funny Ella stories to the post, the other morning Joe and I were in a nice sleep, and all of a sudden we heard a sweet little voice from down the hall yell “Daddy!” The good news is I knew that she didn’t want me, so I got to stay in bed and sleep while Joe got up to play with Dancerella. The other funny Ella story is, we have started using a new cream on Ella. It’s really thick and smooth. We used it on her hands for a while, and just recently started rubbing it on her tummy. What is hysterical is that when I rub it on her, she moans and closes her eyes, like it just feels so good she can hardly stand it! Even when I rub it under her chin she gets a dreamy eyed look and lifts up her head so I can rub more. I don’t know what it is about this new cream, but she loves the way it feels. Of course Joe and I start laughing every time she does it because it’s so funny.

Tuesday, September 23, 2008

Rough Night

Our sweet baby girl has had a rough go of it the past several hours. Last night we were playing and Ella fell and scraped all the skin on the palm of her right hand. It immediately turned into one big, gigantic blood blister. She screamed and cupped her hand in pain. It was terrible! I tried to get her calmed down, but every time I went to look at it she would start crying again. She wanted so bad to hold Doggie for comfort, so she held him with her palm up. And for the rest of the night, instead of crawling like normal, she would either scoot on her bottom or crawl with her elbow instead of her hand. Even this morning she is being very tender with her wounded hand and won't crawl. It breaks my heart when she gets new boo boos, especially big ones like this.

To add to her rough night, Ella was up at least every hour last night. We don’t know if something hurt, or if she was itchy (very common for kids with EB), or if something else was going on. All we know is that she couldn’t rest. Sleeping has always been very hard for Ella, and rest for both her and us has been a constant prayer. She needs better quality rest than what she is currently getting, and we need better quality rest.

To round things out, this morning I was in DC at a meeting and got a call from Metti asking me to come home. Ella had a huge blister on her tongue and I could hear the desperation in Metti’s voice as well as Ella screaming in the background. The older she gets and the more solid food she eats, the fewer tongue blisters she gets, which is a huge blessing. In fact, Joe and I can’t remember the last time she had one. If she does get one they are usually very small and don’t affect her much. She usually just pops them on her own. But this one was big and very painful. I told Metti to give her Tylenol and I’d be home as soon as I could. Fortunately I was able to get home fairly quickly and pop the tongue blister. Within an hour Ella was eating a bottle and now she is fast asleep.

I am telling you this simply to ask that you all continue to pray for Ella. In most respects she is just like any other 15 month old. She is typically a happy and generally healthy baby girl who laughs and plays just like any other kid. But she still faces big obstacles with her skin, and we continue to need your prayers. Please pray for quick and efficient healing on her precious hand (with minimal scarring), as well as continued healing of her mouth. And especially please pray that Ella will be able to rest at night. This is the biggest struggle we are facing right now. With both of us working (Joe with an internship, part-time job and school, and me working full-time) we need sleep. We have tried everything from warm milk and other foods that are supposed to help you sleep, to both over the counter and prescription medications to help her body stop itching. At this point nothing has helped. Her shins seem to be the part that itch the most and the more she kicks them, the more boo boos she gets. We have a lot of prayer warriors out there, and we are so grateful for your love and support. Thank you for everything.

Monday, September 22, 2008

Happy Graduation to me!

I graduated from college in 1999. For my graduation my cousin sent me a picture frame with 5 $20 bills in it. At the time, although I was making VERY little money (we’ve all been there, right?), I decided that I would keep the money in the picture frame and save it for a time when I really needed it. Since then, I moved to DC and the picture frame got put in a box. I've moved 3 more times, and the picture frame has stayed in the box. I've gotten married and had a kid, and the picture frame remained in a box. My wonderful husband and I bought our first house, and I decided to finally go through the box that had been through 4 moves and never opened. I knew that $100 would come at a time when I really needed it! So with that $100 graduation present we were able to get new bookshelves for our basement. As I was going to the store Joe told me to get something for myself too, since it was my graduation gift. I bought myself a new purse and new earrings, and I got Ella new socks (the kind with grippies on the bottom…the poor girl is slipping all over the hardwood floors which is making learning to walk harder than it already is) and of course…a pack of new bows! My disclaimer…for months I have been looking for a red bow. She really NEEDS it to go with her Washington Nationals baseball outfit, and she has several adorable red outfits that it will accent perfectly. The cream and brown bows that came with it are just bonus. Besides, she will need a brown bow for the fall, right? Now if I could just find the perfect bright blue bow (or perhaps blue and orange for the Mets) we would be all set!

I know what you're thinking, how did that $100 buy so much? Well, I have Gooch blood in me, so I know how to find a good deal. (Ok, so I got everything at Target...it's all good.)

Thursday, September 18, 2008

Busy Busy Busy

Congress was on recess for the month of August. They are back in session for the month of September, then will adjourn once again for October so that the members can go back to their respective states and campaign. What does this mean? Probably not a whole lot for those of you who live outside of the DC beltway. For me…it means I am very very busy! Which explains why I haven’t posted in a while. Bear with me. After September things should slow down a bit.

Ella is still an adorable and funny kid! She has recently learned the phrase “What’s that?” So if she sees anything that she wants to examine closer, or if she doesn’t know what it is, she’ll point and say “What’s that?” She has also mastered the skill of calling for her daddy. If she and I are in the basement playing and she knows that her dad is in the house, she’ll crawl to the bottom of the stairs and yell “Daddy” (although it sounds more like daayy). If we go outside to wait for Daddy to come home from class, she will yell while we’re waiting.

The best development we’ve had is that the hair on the top of Ella’s head is finally long enough to put in a little ponytail. It is so cute! She resembles Pebbles Flintstone. I tell Joe all the time that I was put on this earth to be the mom of a little girl. I love having a daughter! I love that I can put her in lace socks every day and cute Mary Jane shoes! I love that she has 15 bows in every color! I love that I can put her hair in a little ponytail and wrap a ribbon around it! I love that her closet is mostly full of pink and ruffles! I love having a little girl! I’d love a boy too, don’t get me wrong, but girls are so much fun to dress up! I know the day will come when Ella won’t let me dress her up in frilly things anymore, so I have to take advantage of it now. As I’ve mentioned before, I’m trying to instill independence in Ella, so I let her pick out her own clothes when I’m around, and at night she picks out her own jammies. Her favorites are, of course, the blue ones with doggies. I know they are for boys, but that’s another great thing about having a girl. Girls can wear blue and no one thinks anything of it. Boys can’t wear pink and ruffles.

As you can see, I changed things around a bit and updated the blog. I figure since Ella is growing up so much, we might as well grow with her.

Friday, September 12, 2008

The Sad, the Rad, and the Bad

The Sad

Ella lost another fingernail last night. This leaves her with one left. It’s on the ring finger of her left hand. Part of me thinks God is sparing that fingernail for when she gets married, but the realist in me knows that it will be gone in a few weeks. The first time she lost a fingernail I was completely devastated. I felt like it was the first real tangible sign of EB that wouldn’t heal. Now, I realize that it’s actually a blessing. The fewer fingernails she has, the less she’s able to scratch and get more boo boos.

The Rad

For those of you not raised in the 80’s, “Rad” is short for “radical,” meaning excellent or wonderful. So here is the RAD news. After 9 months of dealing with my new insurance, the DME (durable medical equipment) cap has finally been raised! To look at an insurance policy and see a DME cap of $10,000, it seems like a lot. However, when your DME costs average about $3,000 a month (they have been as high as $5,000), the $10,000 cap won’t go too far. We tried to work things out with the insurance company directly, but after 9 months, several doctors’ letters, pictures of her wounds and 2 appeals, we were again denied. So, we took it to a new level…to the VP of my department. He then sent a personal email to the CEO of the ADA. The next thing I know, the CEO has walked down to the HR department and told them that they need to make sure we have the insurance coverage we need. He even personally came to my desk to tell me that they were going to take care of Ella. He said, “you guys have enough to worry about without having to worry about her supplies being covered.” The next day we got an email from our medical supplier saying that they had raised Ella’s DME cap and were even considering eliminating the cap altogether. This is a huge praise! I know that I am so blessed to work for such a tremendous organization that makes sure their employee’s needs are met. They have been so accommodating with Ella and allowing me to take family sick leave to take her to Cincinnati. The fact that the CEO was willing to personally make sure that Ella gets her supplies just adds to the fact that the ADA is a wonderful organization who practices what they preach! And, have I mentioned that it’s only 1 mile from home!!!

The Bad

While I understand that “Bad” can be a slang term that actually means “Rad,” in this case I am using “bad” in its true sense, meaning…bad. Ella’s separation issues are not getting any better. Every morning when we hand her over to Metti she cries and reaches out for me or Joe. I know that this is all normal and part of being a toddler, and I know that as soon as I’m gone she’ll be fine, but it doesn’t make my heart feel any better. Every time it happens I just want to take her back into my arms and give her a big hug! Yesterday morning she cried when I first handed her to Metti, but when I went down to give her a kiss and tell her good-bye, I also handed her her Elmo doll. She was so excited to have Elmo that she didn’t even care that I was leaving for the day. No matter how much she cries for me, she still cries for Joe more. She is her daddy’s little girl!

In other Murray news, Grammy Janet was here last weekend. She made some of Joe’s venison into yummy meatballs, which he loved, and she made a nice marinade for some venison steaks. I know Ella had a lot of fun hanging out with Grammy and playing. She just can’t wait until she’s old enough to help Grammy make cookies!

On Monday some friends of mine, Dino and Janice Crognale (and Elizabeth and Isabella), from Massachusetts were coming through VA and decided to stop and stay with us for a couple of days. It had been a while since I had seen them, so it was great to catch up. They are in the process of raising financial support to become medical missionaries in Kenya. If you would like to learn more about Dino and Janice and their service, please click here.

This weekend is more of the same, trying to figure out where to put stuff and hopefully hanging some pictures so that our place actually looks like a home. The good news is that the Elvis bathroom is mostly done! My wonderful coworkers bought me special Elvis shower curtain hooks. They are in the shape of a guitar and actually say “Elvis” on them. They complete the bathroom.

Friday, September 5, 2008

La la la...Ella's World

The above title is in honor of Ella's favorite show, Elmo's world. Poor Metti has watched Elmo's Country Songs probably around 900 times (give or take). So in an effort to keep her sanity in tact, we bought 2 more Elmo videos. One is heaven on earth to Ella because it is Elmo and Pets, which includes an entire segment on you guessed it...doggies! She just kept looking at the DVD cover saying "Doggie...Mo...doggie...Mo."

Life around the Murray house has been pretty standard this week. We are still working on getting the boxes unpacked, although most of the stuff left needs to go on bookshelves, which we don’t have. Our other bookshelves have fallen apart over the last few years (that’s what I get for buying cheap ones), so we need to get some new ones before we can unpack the books. Hopefully that will happen this weekend.

Joe started his new internship this week. He is interning with the Alexandria Public Defenders office and spent his first 2 days in court. This is going to be a great learning experience for him.

Grammy Janet arrives today and will spend the weekend with us. Hurricane Hanna is also supposed to arrive this weekend, so we’ll see how our little house handles the weather (and we’ll pray that the basement doesn’t flood). At least we have an awesome new grill if the electricity goes out. Although the grill won’t do us much good if it’s raining.

I have posted a few new pictures and a video of Joe’s Man’s room and Ella’s room. I’ll get more video and pictures of the rest of the house soon.

Tuesday, September 2, 2008

Happy Belated Labor Day

It was a fun-filled weekend. Friday my office closed early, so Joe and I were able to clean up our old place and turn in the keys. It looked so much bigger without any furniture in it! It reminded me of when we first moved in and didn't have Ella. Once she arrived with all her baby gear, the walls started closing in and the house got much smaller.

Saturday our good friend Casey came over and tore off the shutters, fixed the wood around the garbage bin, and installed the screen door on the front door, all with Joe's help of course. Saturday afternoon Uncle Curby and Aunt Gina arrived with cousins Sam and Nate. It was a great few days hanging with them and playing with the boys. They may be 6 months younger than Ella, but they weigh the same and are almost as long. Needless to say, they are two big boys! And they are SO cute! Ella isn’t yet at the age where she knows how to interact with other babies, so she usually just stares at them for a while, then starts playing with her toys. We did have a new experience though when Ella decided that they boys could not play with her toys. When they grabbed doggie, we understood why she didn't like that. And when they grabbed Elmo, again, we completely understood. But when she would take away EVERY TOY we realized that we needed to work on sharing.

Joe took Curby to his first Nationals game on Sunday, so Gina and I got to hang out at the house and take the kids for a walk. We talked to our neighbors down the street that used to live in Wyoming. They actually lived in Fort Washakie (that’s wah-shuh-key…not wah-shake-ee), so it is always good to talk to them about WY. Sunday night after all the babies went to bed, the adults had a great time staying up late and telling funny stories. Sometimes I forget how hysterical my brother is. It was great having the Alexander side here.

Monday morning Joe and Curby put together Joe’s new grill. When we started this whole house-hunting process I promised Joe that he could get a new grill. We have never lived in a place that was conducive to grilling out. At our last place we tried getting this little charcoal grill, but it was too small and would take forever to cook anything and could only hold a couple of burgers at a time. So now Joe has a man’s grill, complete with a griddle and side burner. In honor of the new grill, we had some people over Monday night for a cookout…our first. We cleaned out the living room and set up our card table, and enjoyed some time with great food and wonderful friends.

We were exhausted last night from a busy weekend, but it was so much fun having all of our company. Now I really need to start working on getting our bedroom in order.