Fun in the south

Sunday we headed to church. Ella loves going to church, and that didn’t change just because we were someplace new. She doesn’t go to the nursery but instead stays with us in “big church.” She gets so excited every Sunday to go to church. I think it’s mainly for the singing (she gets to sing with a full orchestra and big choir…who wouldn’t love that?) but whenever church is over Ella is not a happy camper. She doesn’t cry or anything, she just says that she doesn’t want to leave…then she asks to go out to eat at a restaurant. Well, the Sunday we were in Shreveport Ella pulled a stunt that only Ella could pull.

We attended the service and it was great, but at the end they were having communion (for those who aren’t Baptist, we don’t do communion every Sunday. It usually happens once a quarter or something along those lines). Since I had taken communion at my church the week before, and Ella was starting to get a bit restless and was consistently telling me how thirsty she was, I decided to sneak out and get Ella some water and fresh air. Well, that was a mistake. When we came back in she was NOT happy to see that the service was over. A complete tantrum ensued. I think she felt like since she missed the last song, she couldn’t go home. We tried everything to calm her down, including riding the “church train” (a golf cart type thing that takes people to their cars) and mommy and Ella singing alone. None of it works, so Ella cried the entire way home. When we got back to the house I changed her clothes, put on her Veggie Tales DVD and stuck her in the room alone until she calmed down. Eventually she pulled herself together and came out to join the rest of the family for lunch. That child definitely has a mind of her own.

We had a great time with the family (including my brother and his family who came for the weekend) and planned our Christmas trip for December 2011. Ella is especially excited because we’re going to Cinderella’s house…yep, Disney World here we come! We have a few months to wait, so we can’t get too excited.

We headed back to Texas Tuesday morning. I was sad to say goodbye to Maw Maw and Paw Paw, but I am so thankful that Ella and I were able to spend time with them. We left Tuesday with enough time to stop by and see my maternal grandfather, Big Daddy. He is such a sweet man and I loved spending time with him.

The afternoon was spent talking with a potential EB family (more on that later) and having an awesome pizza dinner with all of my extended family. All of my cousins and their spouses and kids came, as well as my uncles and aunts. I love getting together with everyone and it makes me sad that we live so far away. Ella was great with everyone and performed yet another concert for the family.

We had so much fun and were sad to leave the south (and the 70 degree weather), but we were also happy to get back home to daddy. He missed us.

Louisiana!

Ella and I just got back from a great week in the south…specifically Louisiana and Texas. I didn’t take as many pictures as I wish I had, so I don’t have too many to share.

My paternal grandmother lives in Shreveport, LA, and Ella and I have been trying to get down for a visit. Luckily my parents have been spending the winter down there (who wouldn’t trade below zero temps with snow for sunny 70+ degree weather?), so we were able to spend some time with the whole family.

Yes, Joe was up here in VA being a bachelor, but don’t worry, he didn’t starve. He did lock himself out of the house, but that’s another story for another time. Needless to say, the screen door that is supposed to be on the front of the house is now resting peacefully in our living room.

We left Thursday night and arrived very late. Ella slept on the plane and was less than social when we arrived. She did, however, perk up when we arrived at my brothers house. His twin sons were already in bed, but with a house full of toys Ella suddenly got her second wind. I will say that walking into a house with twin boys is VERY different than our house with one very girly girl. Most of Ella’s toys are pink and have to do with cooking, princesses, etc. Sam and Nate have a house full of race tracks, cars galore, ships, etc. There were 2 dolls which they call “baby sister” (is that a hint to mom and dad?) but other than that it was all boy toys. Ella didn’t care and played with the toys anyway.

Friday morning we headed to Shreveport to spend the weekend with my grandmother. It has been way too long since we’ve been able to spend time there, so Ella and I were both excited to hang out in my dad’s hometown. Of course when we arrived GiGi and Paw Paw had a very special present all the way from Florida. Ella got an authentic Cinderella dress direct from Disney World. It is complete with a puffy skirt, glitter, puffy sleeves and even a huge bow in the back. It was so puffy that Ella claimed she couldn’t sit down. It was even so puffy that it wouldn’t fit in out suitcase on the way home, so GiGi and Paw Paw had to mail it to us. Ella is anxiously awaiting its arrival.

We had so much fun spending the weekend with Maw Maw, GiGi and Paw Paw. Uncle Curby, Aunt Gina and the boys, Sam and Nate, even came over to spend time with the family. It’s always so much fun having everyone together.

Saturday Maw Maw had a little party and invited several of her friends to come by and meet Ella. They have all heard a lot about Ella, and several of them have even sent her special presents. One woman attends a church that prepared prayer blankets for people who are struggling, and they made 2 for Ella. The blankets are so precious and Ella loves to snuggle in them. It was wonderful to meet all of these women! One of my good friends, Jenny, even stopped by. Jenny and I served as missionaries together in Boston and have remained friends. A few years ago she and her husband moved to Shreveport, so whenever we get there for a visit we try to connect.

What shocked me the most was how social Ella was during the party. She decided that it would be best for her to wear her Cinderella dress…it was a party after all. She greeted each person that came into the house and talked to them without a problem. She even gave several of the women hugs, which is HUGE considering she hadn’t met any of them before. And in true Ella fashion she put on not one, but 2 concerts. Ella is so funny. She’s the shyest kid in the world until she’s asked to sing, then suddenly she’s ready to stand in the middle of a bunch of strangers and belt out whatever song comes to mind. Saturday she performed at the beginning of the party (I think she sang You’re a grand old flag, Twinkle Twinkle, and Jesus Loves Me), then toward the end she performed again. She would have continued singing after 3 songs, but her mean mom decided that 3 was enough (if I didn’t limit her she would sing forever). Ella had a great time meeting everyone, but by the time the party was over she was definitely ready for some down time with her Veggie Tales DVD.

More on the rest of our trip tomorrow. I try not to get too long for my loyal readers.

Homework

So sorry about the delay in posting. We’ve been busy bees here at the Murray house.

2 weekends ago Ella got her first homework assignment. Her teacher asked all the kids to color and cut out 4 hearts and with those they would make a graph. Through this project I learned something very important…Ella is MUCH more studious than her mom.

She was so excited to work on her “special homework” and wouldn’t let me touch a thing. She chose the colors for each heart and colored them herself. And yes, my child…the kid with contracted fingers and 2 fingers on her right hand that are completely webbed together…Ella cut out all 4 hearts completely by herself. When I would try to help she would tell me that this was her special homework. I was hardly allowed to even touch the hearts. I was so proud of her, and she was so proud of herself. I was even more proud when we got to school Monday morning and most of the hearts had been cut out by the parents. They had to cut out the hearts for their “normal” kids but my “special needs” child cut them out all by herself! GO ELLA!

Here are some pictures of her working on her homework. And I think it was hysterical that she kept calling it her “special homework.” Someday she won’t think it’s so special.

Since she cut with her left hand and we don't have left handed scissors around, she kind of twisted her wrist and cut over the top instead of the normal way. Who cares...it worked.

The finished product. Not too shabby, if I do say so myself! She got better as she went along.

What a week

In case you didn’t know, Ella lives on carbs. Everything she eats is packed full of flour. Chicken nuggets, fish sticks, Cheerios, mac and cheese, spaghetti, sandwiches, etc. The girl loves her some carbs. So Saturday night Ella had a bowl of cheerios and 3 chocolate chip cookies (they were small…don’t judge). After she finished eating, Joe and I noticed that her stomach was sticking out. It looked swollen, almost like she was a malnourished kid. We’ve noticed it before but always wrote it off as nothing, but for some reason on Saturday it really started concerning me. I guess there’s a chance she could be malnourished, but I would be shocked. She eats a lot and takes vitamins every day.

I decided that the best thing to do was google it…after all, doesn’t google always have all the right answers? So I did a search and immediately there was a theme in all the information that popped up…Celiac. For those of you who don’t know, celiac is when a person isn’t able to tolerate gluten. Joe’s mom and 2 of his sisters have celiac, and it’s a genetic disease. Obviously, given those factors I took a closer look at the symptoms of celiac. Several pieces of the puzzle started coming together. Whenever Ella eats she has a hard time standing up afterward. I always just assumed that her legs were stiff, but what if it was actually her stomach hurting? And one of the biggest symptoms in kids is that they can’t gain weight. Ella has always been small, but she’s lost 1 pound since starting school, and I was completely shocked because she eats all the time…but if she’s eating things that her body can’t process then she wouldn’t be gaining weight. Anemia is also a big symptom because the body can’t absorb iron, but anemia is also really common in EB kids, so I wasn’t too concerned about that (Ella has been on iron supplements since she was a baby).

Given the above information, I decided that until we could take her to the doctor I was going to cut gluten out of her diet. It wouldn’t hurt her to reduce her gluten intake, so it wasn’t a big deal. Sunday was her first gluten-free day and both Joe and I noticed a huge difference. She no longer complained about things hurting when she stood up after dinner, she didn’t walk hunched over anymore, and it almost seemed that her appetite increased. We ordered pizza for lunch and got her a special gluten-free pizza. The girl ate 3 slices!

Then at school on Tuesday Ella’s teacher noticed that she was having a hard time standing up and at one point almost fell. Both Metti and I noticed that Ella just wasn’t acting like herself, so add that to her stomach issues and I put a call into the doctor. Fortunately she was able to see us that night.

Far and away we have the best pediatrician on the planet! I won’t say her name here, but if anyone in Northern VA is having a baby, you need to go to our clinic for all your pediatric needs. All of the doctors there are amazing…but ours is the best (of course). She listened to all I had to say about Ella and all of her symptoms, etc. But what really struck me was that she took one look at Ella and said, “She’s anemic. We need to test her hemoglobin (basically the same thing as testing her iron).” So the nurse came in and tested Ella’s hemoglobin (in Ella’s words, “She gave me a chuge boo boo!”) and Ella was at a 7.5…at 3 years old she should be at an 11. Ok, so this explains a lot of her symptoms and further reaffirms my celiac suspicions, especially since she was taking double the average dose of her iron supplement and is still only at a 7.5.

We have now doubled her dosage of iron (yeah, that’s a lot of iron) and are keeping her on a gluten free diet until I can get her in to see a GI. Already she is looking better and has more color in her face. It’s going to be awhile before we see the long term effects of either of these changes, but I feel confident that she’s already feeling better and that we’ll see some significant improvement before long.

Wednesday Ella had to go back to the eye doctor. This is the most dreaded doctors appointment. The doctor is great, but how the appointment goes is fully contingent on how cooperative Ella chooses to be. If she won’t cooperate, then things go very badly. If she does cooperate then we all leave with smiles and make a stop at McDonalds on the way home. Ella’s mood often depends on how long we have to wait before actually getting to see the doctor. The last time we went we arrived at 9 and got home around 1…that makes for a VERY long day. This time things went much smoother. We were in the exam room within 30 minutes of our arrival, and saw the doctor shortly after that. Ella was mostly cooperative. She didn’t shut her eyes (which is always fun when you’re trying to do an EYE exam), and she told them what pictures were on the screen. Unfortunately we have to be more aggressive in patching her left eye. Her right eye still isn’t up to par and the minimal patching we’ve been doing hasn’t worked enough, so now our poor girl has to wear a patch a minimum of 6 hours a day…ugh.

I guess the good news is that we’ve had our fill of doctor visits for awhile. It’s never fun to have 2 in one week, and especially 2 in 2 days. Ella was a champ, though, and she told me all about how brave she was and how proud I must be. And I know you’re probably feeling really bad for Ella with all this stuff. Don’t worry, she’s doing fine. The truth is that she hasn’t even really noticed that she’s on a gluten-free diet and thank heavens she hasn’t asked for any of the foods she’s not allowed to eat. She does hate the eye patch and complains whenever I put it on, but she deals with it. I am always so amazed at how strong she is, even after all the junk she has to go through. She is an amazing little girl.