Earthquakes and Hurricanes and Preparedness, Oh My!

Well, the Murray’s survived the earthquake. We had a few pictures fall off shelves and some things fell in the bathroom, but no permanent damage. And our house is still standing, so that’s good news.

Now we get to prepare for hurricane Irene. Let’s get one thing straight…I’m from Wyoming, a land-locked state. We don’t get hurricanes. In fact, I looked it up online and Wyoming has an annual rainfall of 13.31 inches a year. Virginia has an annual rainfall of 45.22 inches. Needless to say, I had never experienced a hurricane until I moved to DC. Hurricane Isabel came through just a couple of months after I moved here and I was completely freaked out. I stressed about it for days and went to the store and bought all the necessary supplies. I think I even bought 10 gallons of water, and I was living alone. I lived in a 3^rd floor apartment, so I knew I probably wouldn’t get flooding, but I had 2 huge picture windows and had images of the glass breaking and trashing my apartment. If I had known then that things like that only happen to people who live right on the water, then I wouldn’t have stressed out so much. Luckily my electricity only flickered off a couple of times and I was fine. Unfortunately something happened at the water facility and the most water I could get was a small trickle, but everything was back to normal within a day. And luckily, since I was so freaked out, I had filled my bathtub with water so I had plenty of water to flush the toilet.

I hope the same thing happens with Hurricane Irene. This time I have much more at stake. Now we’re homeowners with a basement and I’d really like it not to flood. We also live in a neighborhood that seems to lose electricity far too easily. Now we have Ella and the thought of doing her bath in cold water and her bandages without light really isn’t appealing (if we lost power I’d just skip the bath and only do bandages). And unfortunately our house is entirely electric, so all of the cooking will have to be done on the grill.

All that said, I think we’re prepared. We have plenty of batteries and plenty of food. Last night we collected all of our flashlights and camping lanterns. We have some water (although we could probably use more) and we cleaned out the drain near our basement door. Fortunately we live on a hill, so most of the water should head away from us and not cause too much, if any, damage.

I’ll take snow over rain any day! I know snow. I know how to drive in snow. I understand how it works and what is and isn’t possible with snow. I like that you can go out in the snow and not come in drenched. Rain is completely out of my comfort zone. Whenever I tell people about Wyoming winters they always gasp. Sure, we get several feet of snow each year, and yes, it has been known to snow in June, and yes, we get below zero temperatures on a regular basis. That said, I would take a good snowstorm over a hurricane any day!

Alas, we live in VA and we’re expecting Irene to make her entrance sometime soon. I’ll let you know how it goes.

Post Surgery Report

One 5:00 am wake-up call + 2 hours in pre-op + 4 hours in the OR waiting room + 1 hour in recovery + 22 hours in a hospital room = 1 VERY LONG SHOWER!

We headed to Cincinnati last Wednesday. We wanted to get there a day early so that we all could get rested up before the surgery. We decided to drive this time, and Joe and I are so glad we did. The drive there only took about 9 hours and that included a stop at Cracker Barrel for dinner. It was much easier than we anticipated and the scenery was beautiful! West Virginia is one of the prettiest states I’ve ever driven through.

Thursday was relaxing day. We didn’t do much of anything other than eat and go see a movie.

Friday was the big day. We had to be at the hospital by 6:30 am, so we woke up at 5 just to make sure we had everything we needed. We let Ella sleep and just took her to the hospital in her pajamas. She kept asking where we were going, so we told her that we were going to see our friends. She was definitely confused that we let her stay in her pajamas. She knows that we don’t wear our jammies outside of the house. Ella has great intuition, and she knew from the start that something was going on.

When we arrived at the hospital they immediately got us checked in and took us back to the room to prepare for surgery. Immediately Ella said, “Wait a minute! These aren’t our friends…these are DOCTORS!” We then launched into a discussion about how doctors ARE our friends and how they just want to help us.

Each doctor took as much time as needed to meet with us and talk about what was going to happen. We were able to ask any questions and felt comfortable with the whole process. It was comforting to get there and they knew exactly how to prepare everything for a kid with EB. They had a special packet of Mepilex, Mepitel and Mepitac. I realize this means nothing to most of you, but for us that was major! The fact that they even had that stuff in the hospital was huge. In fact, I had packed all of those supplies in my purse to make sure they were using the right stuff. They even have special kits for intubation that are only used on EB patients. They have figured out the best way to intubate them with the least amount of damage.

The nurses let Joe carry Ella down to the operating room, he laid her down on the operating table and we kissed her sweet face. They put the mask on and soon she was sound asleep…snoring and everything. The walk back to the waiting room was the hardest walk of my life. We both cried the whole way. Within about 35 minutes the surgeon, Dr. A, came out to tell us how his portion of the surgery went.

He gave us this great photo to help show what had been done.

The photo on the right is Ella’s throat before the dilatation. You can see that it narrows in the middle. He said it was about 50% closed, which is better than the 70% he originally thought. The photo on the left is after the dilatation. Ahhh, nice and open. Hopefully this will be one step in helping Ella eat more.

As glad as we were to have that portion of the surgery done, the dilatation was the easy part. Next came the dental work. That took the next 3 hours. The surgical staff was great and would call every hour and give us an update on how things looked and where they were in the process. When the surgery was complete the dentist came out and gave us a complete rundown on the state of her mouth. In the end she needed 2 caps and several cavities filled. When we got back to the recovery room her poor mouth was so swollen she looked like a little chipmunk. She kept trying to tell me that she had something in her cheek and would open her mouth so I could see. It was so sweet. They gave her Tylenol for the pain and as soon as that kicked in she was back asleep. She slept through being transported to her room and slept through being moved from one bed to another. She even slept through Joe and I chowing down on Chipotle (which was good since she still couldn’t eat for 6 hours after surgery).

She woke up at 4:30 and the first words out of her mouth were “I’m hungry!” We had to distract her for the next hour and 15 minutes (thank you Tangled) until her food ban was lifted. At exactly 5:45 pm Ella started eating. She polished off a scrambled egg, 2 hard boiled eggs, chocolate pudding, a Nutragrain bar, a chocolate doughnut, 4 pieces of bread with butter and 2 juice boxes. Yeah, she was pretty hungry. Once the food was in her and she started feeling more perky, she was ready to get out of that bed! Joe and I were completely exhausted, but Ella had slept all day so she was ready to get moving. She and Joe walked all around our floor looking at all the pictures on the wall and talking to the nurses.

That night all 3 of us stayed in Ella’s room. Neither Joe nor I were going to leave that hospital room. Joe laid with Ella in her bed for awhile, but she only liked that for a little bit, then said, “Daddy, you’re making me hot. Please go away.” That meant that Joe and I shared the pull out bed…yes, it was a twin size… no, I didn’t get any sleep. Ella woke up at 4 am, so I went and slept with her for a little bit, then she kicked me out too. At 5:30 Joe woke up ready to face the day, so he headed downstairs to the cafeteria to read the paper, and I got in a solid 2 hours of sleep. Ella ate another large breakfast of 2 bowls of cereal and a scrambled egg, then we were discharged. The hotel had never looked so good! I took the longest shower of my life and loved every minute of it!

Ella’s recovery has been great! Her mouth was sore for the next few days, but as long as we gave her Tylenol she was able to eat fine. Ella had very minimal damage. There was one little spot next to her right eye, and of course her lips were pretty banged up, but that’s it. While she was in the hospital she got an iron infusion (to help with her chronic anemia…common in EB) and both Joe and I think that has helped her a lot. She is quite the little trooper and has bounced back better than I expected.

The last trip of the summer

The Murray’s have done a lot of traveling this summer. Cincinnati in June, Los Angeles in July, Casper in July/August, and now we’re headed back to Cincinnati.

This week we’re heading back to Cincinnati for Ella to have surgery. She’s going to be getting 2 cavities filled (and all that goes along with a standard trip to the dentist…x-rays, teeth cleaned, etc.) as well as have her first esophageal dilatation.

Unfortunately EB affects the mouth, which means her teeth are compromised. No one likes to have cavities filled, but we know it needs to be taken care of. The truth is that while I’m scared of Ella going into the OR and being put under, there’s a part of me that’s really relieved that she’s going completely under for her dental work. I don’t even want to think about how terrible it would be to hold her down while she gets 2 cavities filled.

EB affects the throat as well, so sometimes eating can cause blisters and sores inside her esophagus. Once these heal it causes a scar, similar to those on her skin, which sort of shrink her esophagus. They call this a ‘stricture.’ So at one point in her throat she has a stricture of 70%, meaning that her throat in that one area is 70% closed. Really, this isn’t nearly as bad as it could be and she’s still able to eat with few problems, but considering that she hasn’t gained any weight, we want to get the stricture taken care of and see if we can get her back on the growth chart. The hope is that once the stricture is out of the way and she’s able to swallow without any discomfort, then she’ll start eating more and plump up. This procedure (a dilatation) is very common among kids with Ella’s type of EB, and the truth is that it’s kind of surprising that she’s made it to 4 years old and this is her first one. That said, it’s still major surgery.

We have decided to drive to Cincinnati since we don’t know how she’ll respond to the surgery and we don’t know how she’ll feel afterward, so please pray for safe travel and that Ella doesn’t get too stir crazy in the car.

Also, please pray for the doctors. We go to Cincinnati for Ella’s treatment because they have doctors who know how to handle kids with EB. The surgeon doing her dilatation has treated thousands of kids with EB and has perfected a procedure which causes the least amount of damage with the quickest recovery. We are thankful to be working with an anesthesiologist who understands EB and also knows how to handle our special kids. The dentist also knows all about EB and has worked with EB kids before, but unfortunately any dental work is going to cause damage in the mouth. Please pray that these doctors have steady, gentle hands and that Ella leaves the OR with as little damage as possible.

Please pray, of course, for sweet Ella. At this point we haven’t told her anything that’s going on. All she knows is that we’re going to Cincinnati for a trip. I guess we don’t want to get her freaked out too early in the game. She will have to stay in the hospital overnight, so please pray that she’s not too overwhelmed by the nurses coming in and out of her room. Of course Joe and I will be there with her the entire time, but sometimes that doesn’t help. And please pray for Joe and me to be comforted and make the right decisions for Ella. It doesn’t matter that thousands of other kids have had these procedures done, we’re still nervous. She’s our precious girl and we want her to be as safe and protected as possible.

All this said, we could really use your prayers this week. Thanks a million!

Fun in Wyoming!

Sorry for the long delay in posting. Ella and I just returned from an 11 day trip to wonderful Wyoming. We had a great time hanging out with GiGi and Paw Paw, Uncle Curby, Aunt Gina, Sam and Nate. The only thing missing was daddy, and Ella was not happy about it. Several times she asked if we were going to pick up daddy, or if he would be there when she woke up in the morning. And if I would say that we were going home, meaning GiGi and Paw Paw’s house, she would say, “We’re going home to see daddy?” She missed him a lot!

We left way too early on Friday June 29^th. We flew out of Baltimore, so we had to be up around 4 am and leave the house around 5 to get there in time. Ella was not happy about waking up when it was still dark. All she knows of dark is that she has to go to bed, so she didn’t want to go back to bed right after she woke up. Luckily the sun came up soon and we were on a plane headed to the Wild West.

Here, of course, is where things got sticky. Let me preface this by saying that I obviously have terrible flying luck. I could count on one hand the number of times my flight to or from Wyoming has actually left on time. And keep in mind that I grew up in Casper, so I have taken that flight A LOT! And after the several issues we dealt with on this trip, a certain airline that flies into Casper (I won’t mention any names but it starts with the same word that USA starts with) and I are not on very good terms. The last 4 times we’ve flown with them has resulted in a strongly worded letter from me. Yes, I keep getting flying discounts for our troubles, but I’d rather pay full price and have a problem free flight.

All that said, our flight from BWI arrived in Denver at 9:30 am and our flight to Casper was supposed to leave at 11:15 am. After several delays, our flight was officially canceled around 1:30. The earliest flight they could get us on was 3:40 pm the next day, and there was no chance of standby since everyone else was also going to be on standby. After talking it over with Joe and my parents, I decided just to rent a car and drive the 4 hours to Casper. I’ve driven it many times before and the weather was beautiful, so it wasn’t going to be that big of a deal.

At the time I decided to drive, this young mom traveling alone with her daughter sat next to me and burst into tears. She was also on my flight going to see her mom and had had a rough day. Come to find out this was the first time she had ever flown in her life, and she had been up since 3 am with her 15 month old daughter, and neither of them had eaten anything all day. My heart went out to her, so I did what anyone in my shoes would do and offered to drive her to Casper. She was thrilled! We rented a minivan and 2 car seats, hopped in the car and off we went (of course we stopped at Chick-fil-a on the way). Her poor daughter was overly tired and cried most of the drive (which Ella was NOT happy about…she kept her hands over her ears for most of the trip), but we finally made it…and it wasn’t even dark yet!

GiGi and Paw Paw were at their musical show (more on that later) so Ella and I had dinner with the Burb’s (my brother and his family) and waited for GiGi and Paw Paw to arrive.

Saturday morning we woke up and spent the morning relaxing, then Sat night we headed out to see first hand what the entire city of Casper was talking about in their RAVE REVIEWS of Titanic, The Musical. Ok, so maybe the entire city wasn’t talking about it, but everyone in our world was talking about it, and the Casper Journal even did an article on my parents.

Yes, GiGi and Paw Paw played Ida and Isidor Straus, a German couple who were returning to America on Titanic. They were owners of Macy’s and Isidor had even served in the US House of Representatives (yes, they were a real couple). Long story short, they had been visiting Germany and were coming back to the US on Titanic. Of course you know the story of Titanic, and if you’ve seen the movie (which I’m sure you have) then you would recognize the Straus’ as the older couple lying in their bed as their stateroom flooded. When the ship was going down Ida told Isidor that she wasn’t leaving without him and how did he think that after 41 years of marriage that she would leave him now (coincidentally, GiGi and Paw Paw have also been married 41 years). Needless to say, they went down with the ship…but not before a stunning musical number that left much of the audience, and their 2 children and daughter-in-law, in tears. Unfortunately, the time difference caught up with Ella an hour into the show, and she fell fast asleep in my arms. The truth is, this was much better than the alternatives of her crying throughout the whole thing, or her getting too antsy and us sitting in the lobby for the duration of the musical. The next day they had a matinee, so we all returned and this time we took Ella and the twins inside the theatre just to hear GiGi and Paw Paw sing. We were all so proud!

It was a wonderful trip with too many things to mention in this post, so I’ll just hit some of the highlights.

· Ella caught a fish. Paw Paw had picked out a very special Princess fishing pole and attached a “practice fish” to it so she could get an idea of what she’s supposed to do. Well, she soon decided that she wanted a fish that moved (since practice fish aren’t real after all), so Paw Paw threw in his line and caught a fish, and Ella got to reel it in. She was so proud of herself.

· We got to go see Barney Live! Yes, I realize that this sounds annoying to most of you, but I assure you it was a good time. It was about 10 seconds into Barney’s first song, then Ella hopped off her chair and started dancing. She danced through the entire show!

· Sam and Nate have now been introduced to the world of Princessess. They watched Tangled, The Princess and the Frog, Snow White and Beauty and the Beast. Ella even let them play with her little Princess dolls. In fact, by the end of the week Sam had declared that he wants to be Prince Charming for Halloween.

· We got to participate in 4 very fancy tea parties. I think these may have been the highlight of Ella’s vacation.

· We visited 2 consignment stores, one for kids and one for adults. Ella got 2 new “no-legs” dresses and a Snow White dress (because apparently she needs more princess dresses). I also got some clothes.

· We went up on the mountain and had dinner at GiGi and Paw Paw’s cabin. We cooked hot dogs and smores on an open fire. Ella wouldn’t get close enough, so her hot dogs were raw and her marshmallows were white, but she had fun anyway.

· GiGi and Paw Paw have TWO antelopes on their wall, one upstairs and one downstairs. This was big news for Ella and she couldn’t wait to tell daddy all about it.

It’s kind of late and that’s all I can remember right now, but if something else spectacular comes to mind I’ll be sure and post it. We had so much fun with the family, of course it wasn’t nearly as fun as it would have been if Joe had gone with us. I’ll also get some pictures up soon. There is too much to catch up on after being away for 11 days.

Of course our trip wouldn’t be complete if our flight home wasn’t delayed. Instead of getting home at 10, we arrived at 11:30…then had to drive from Baltimore to Alexandria (about 45 minutes). At least there wasn’t any traffic.