Tuesday, February 28, 2012
At 4 years old I thought we had pretty much been through it all…except those lovely teenage years, of course. Alas, I was wrong. This week we experienced yet another “first” in the life of Ella. Her first stomach flu.
I know what you’re thinking…how is it that a little girl who attends preschool is just now having her first bout of stomach flu? That’s a great question and the answer is, I have no idea. She either has an immune system of steel, or is just really good at avoiding illnesses. Either way, I am so thankful that she hasn’t had to go down that road.
All of that, however, ended this week. The stomach flu has been going around the preschool and as much as I hoped we would avoid it, I knew in my gut that it was just a matter of time. Sunday we went to church and Ella seemed a bit lethargic. After lunch we came home and she slept for almost 3 hours. I just chalked it up to lack of sleep (which happens a lot on the weekends). After her nap and a snack, she seemed back to normal.
Sunday night I heard her wake up to get a drink of water several times throughout the night, but I didn’t hear anything overly concerning. Then Monday morning she woke up almost an hour earlier than usual. When I went in to check on her and ask if she wanted her standard morning chocolate milk, she said no. So I asked if she just wanted breakfast instead, and again, she said no. That’s when it happened…my sweet girl got sick.
After things calmed down I moved her into the bathroom where I stripped her down. She looked at me with her precious face and said, “Mommy, I think you better call church school and tell them I won’t be able to come today.” Then she asked for doggie…poor, puke-covered doggie.
Ella spent the entire day laying on the couch and watching TV. She slept A LOT! I spent the day cleaning, sanitizing the house, and doing laundry (thank heavens for the “sanitize” setting on our washer). She did manage to keep down a few bites of chicken noodle soup, but that was it. The saddest part of the day was that Ella had to miss her preschool graduation pictures with her class. This upset both Ella and me.
All that said, I’m crossing my fingers that today is better. As of right now she’s still sleeping, so I’m hoping she sleeps the stomach flu away and wakes up bright eyed and bushy tailed. I’m also praying that Joe and I aren’t next on the list.
Wednesday, February 22, 2012
I love snow. Growing up in Wyoming meant we always had a lot of snow. In fact, in the morning when we left for school, we put on our hats, mittens, scarf, coat and snow pants…yep, snow pants were worn to school every day. Buying new snow pants was just part of school clothes shopping.
Curby and I were REALLY lucky because we went to Grant Elementary school…the school with the hill. At the beginning of winter my mom would buy a big roll of heavy black trash bags. We would put one in our backpack and during recess all the kids would go sledding with their trash bags. I remember feeling sorry for my friends that went to other schools that didn’t have hills. How boring their recesses must have been. I ripped many snow pants on that hill. In fact, I think there’s some story about when Curby was little and we had just moved to Casper. Mom didn’t know the snow pants protocol, and Curby wore a new pair of jeans to school. As I recall, by the end of the day his new jeans were pretty trashed.
All that said, I love snow. Snow was an integral part of my childhood. Whether sledding, snowshoeing, cross country skiing (although I only did that a couple of times because lets face it, I’m a wimp and that is HARD), building snowmen or snow angels, etc. I love winter and I love the snow!
So you can imagine how disappointing this winter in Northern Virginia has been on this Wyoming girl. There have been several times where we were supposed to get snow, and in the end we got nothing but some pretty wet rain. In fact, one day they delayed public school 2 hours because we were supposed to get several inches of snow…we got nothing. To date, the DC area has gotten a total of 2 inches of snow. 2 INCHES!!! That’s just sad.
Most people experience seasonal depression in the winter because it’s too dark and dreary outside. I have been experiencing seasonal depression because there’s no snow. So what do you do when the snow won’t come to you? You go to the snow, of course.
Our awesome friends, the Grubbs, were given a weekend at a family friends mountain house in Wintergreen, VA. They invited us to tag along and we were more than happy to oblige. On the way up the mountain I was disappointed…there was nothing. When we got to the Wintergreen resort there was still no “real” snow, only man-made snow on the slopes. While it’s not ideal, man-made snow is better than no snow at all.
Here we are sledding on some man-made snow. Ella even took it upon herself to make a few snowballs and throw them at us.
We had a ton of fun playing in the snow! After awhile we decided to head back to the house and take a nap. Shortly after we got to the house it started to snow…first there were small little flakes that didn’t look like they would do much, but soon the flakes got bigger and bigger. Next thing we knew, there was snow! And it was starting to accumulate! Happy Katie!
I was so happy I decided that I was going to make a snow angel on the deck.
We spent the rest of the night sitting in front of the fireplace, watching the snow fall. It was perfect!
Monday morning we had to come back to reality…the reality that even though there was beautiful, white, glorious snow in the mountains, here in Alexandria there was still nothing. Our neighbor said it rained Sunday but they didn’t see one flake. I’m still sad we haven’t had any snow at our house, and it doesn’t look like there’s any in the forecast, but at least I got to have one magnificent weekend with snow.
Friday, February 17, 2012
The average 4 year old asks about 400 questions a day. I think in Ella’s case it would be easy to add a zero to the end of that number. That girl asks a TON of questions! And each question she asks spurs on about 25 more questions. It's obvious that she's soaking in every ounce of information she can.
Lately the questions have taken on a new level, and most of the time I don’t know how to answer them.
I get a lot of questions about why Ella has boo boos but her friends don’t. While watching commercials she’ll ask me why the kids on TV don’t have covers like she does. My standard answer is that God gave her special skin. She then goes into a long conversation about how God chose her to do important things and how she is a gift that God gave mommy and daddy.
The other day Ella and I talked to my dad on the phone. When we hung up the phone it was obvious the little wheels in her head were turning. She looked at me and said, “Mommy…GiGi is your mommy and Paw Paw is your daddy. Grammy is daddy’s mommy, but (said with a very concerned face and voice) daddy doesn’t have a daddy.” That was NOT something I was prepared for. It was obvious that this really upset her. She loves her daddy and the thought of her daddy not having a daddy was very sad. We had a long conversation about how daddy’s daddy, Grandpa Bill, is in heaven. Of course that lead to more questions about heaven and how Jesus lives there, and where heaven is located.
A few days later we were sitting down to play the piano. Ella requested “Jesus Loves Me” then looked at me with those big blue eyes and said, “Mom, Jesus lives in heaven, right?” “Yes,” I responded. “Then how does He see us? If He’s in heaven, how does He know what we’re doing?” I answered it the best way I could and told her that even though Jesus is in heaven, he still looks down and knows what we’re doing and helps us.
Ugh. These are getting harder by the day.
Sunday morning some friends of ours got baptized at church. Ella was very curious about this whole process. Obviously she is not a fan of bath tubs, so the thought of someone going into a “big bath tub” in front of the church was very strange to her. She asked a lot of questions about why they were getting baptized and what it means. Joe and I tried to explain it to her the best we could that our friends asked Jesus into their hearts and promised to live their lives for Him. After you make that decision, it’s important to get baptized. Usually Ella colors during the sermon, but I swear this week she was listening to everything Pastor Don said about getting baptized. After church she said, “Daddy, you and mommy haven’t been baptized.” It was a great opportunity to tell her about how we each made the decision to live for Jesus and got baptized. She then looked at us and said, “But I don’t have to get baptized.” Joe and I explained to her that it was her decision when to get baptized. When she felt like it was time and God wanted her to do it, then she would get baptized too. But none of that would happen until she was ready. She liked that answer…she likes being in control.
Add on top of all those questions, the death of Melissa, and we had a whole slew of new questions. She’s very interested in why people go to heaven. At first I would tell her that Melissa, just like Grandpa Bill, was sick. Her body was very, very sick, so Jesus asked her to come live with Him in heaven. Then…Joe got sick. It was just a very minor stomach bug that only lasted a couple of days, but Ella was concerned that her daddy was going to go to heaven too. I tried to explain that Melissa and Grandpa Bill were very sick and weren’t getting better, but daddy was getting better and he would be ok. I dread the future of this discussion. The older Ella gets the more and more people she's going to know who die...some will be friends. I dread that day. How do I explain to my sweet little girl that her friend died because she had the same disease Ella is fighting?
All of this to say, it has been reaffirmed that I don’t know what in the heck I’m doing with this parenting thing. I fake it the best way I know how, but I am at a loss with most of these questions.
Friday, February 10, 2012
I’m heartbroken. My good friend and former roommate, Melissa, went home to be with Christ this morning. In October she was diagnosed with stage 4 cancer. She died today…almost exactly 5 months later.
Cancer stinks. It stinks on so many levels, but today it stinks because it took the life of my awesome friend.
I first met Melissa back in 1997 (or 1998) when I was working for World Changers. We had a project in Norfolk, VA and I met this girl who was interning at the Southern Baptist Convention office there. 2 years later Melissa worked for World Changers in the national office in Atlanta, GA. I wasn’t working for them anymore, but I did get to meet her again when I stopped by the office to say hi. Little did I know that soon we’d be roommates.
Melissa moved into the Martin Mission House a year after I did. She was coming to Boston to be the new campus minister at the University of Massachusetts in Lowell (UMass Lowell). We instantly hit it off (although if you didn’t instantly hit it off with Melissa then there was something seriously wrong with you).
This picture makes me laugh. Not so much the picture itself, but the story behind the picture. One Saturday Melissa and I decided to go for a road trip. We were going to just get in our car and see where the road took us. Since this was in the days before GPS, we got lost…really lost. I think we drove around for 4-5 hours and didn’t have a clue where we were. I honestly don’t even think we had a map in the car (because we were really smart like that). Somehow we came across this pumpkin patch. They had mountains and mountains of pumpkins that you could climb. I’m pretty sure we got our picture taken at the top of one, but I can’t find that picture. What I did find is this picture. Melissa had the greatest smile.
This picture was taken on yet another adventure drive. This time, we at least knew where we were headed. We decided to go to Salem, MA and learn all about the Salem Witch Trials. (Did I mention that we were dorks).
Finally, this picture…this is probably my favorite picture from my Boston days. We were the 3 roommates at the time and several of us from church headed to New York City for Thanksgiving. I had never been to New York before, so this Wyoming girl was very excited! We woke up early and headed downtown so we could see the parade, and stayed in the city all day. It was FREEZING! By the end of the night we were a pretty cranky group and were ready to call it a night. Suddenly this wonderful Santa entered our lives. He had one-liners that had us cracking up for weeks. Even now when I think about him I laugh. You can even tell by this picture that we had been laughing. It was a great ending to a pretty crappy day.
I have several other pictures of Melissa from our time in Boston, but these are my favorites.
My heart aches with how much I miss Melissa. I want to see her smile, just one more time. She had a smile that could light up a room. I know a lot of people say that, but with Melissa it was true. She has forever changed me.
Monday, February 6, 2012
Well, we just returned from another trip to Cincinnati. In a nutshell, Ella is doing pretty well, all things considered.
We flew in Wednesday night and headed straight to bed. Ella’s first appointment was at 8 am Thursday morning. Ella is NOT a morning person. If she could sleep until 10 every day, but stay up until midnight she’d probably do it. As much as I’d love to fault her for this, she takes after me so I have no one to blame but myself.
Her first appointment was with the dentist. She did a great job showing them her “fancy” teeth (that’s what she calls her teeth that have been capped). At this point all looks good and she doesn’t need any more dental work right now.
Next was the ophthalmologist. Nothing new to report here either. She gets new glasses (which is good considering hers are over a year old). Ella has specifically requested the lenses that change into sun glasses, just like her daddy has. I also need to start lubricating her eyes more to hopefully avoid more corneal abrasions. We already use the eye gel in the morning and at night, but now we have to do drops in the afternoon. I’m not looking forward to that. Otherwise her eyes look good. A couple of small scars from past abrasions, but nothing that really concerned the doctor.
After lunch we headed to the clinic. This is the main point of our visit. We get to talk to any other doctor you might possibly think of, and ask as many questions as we like. Nothing really new to report here either, other than we all are in agreement (Joe and I included) that the time for Ella to get a g-tube is drawing near. It’s not going to happen immediately, but it will be in the near future. As odd as it sounds, I think we’re both kind of relieved. We knew this was coming down the pike, and the past several months the stress of trying to make Ella eat more has really gotten to me. It’s not that she doesn’t eat…the child eats (boy does she eat!). It’s just that it’s impossible for her to take in enough calories to do all that her body needs to do. She can’t heal, fight infection (wound infections and regular 4 year old infections like a cold), gain weight, grow taller, and cognitively develop. She takes in as much as she can, but in order for her to get all of the calories she needs to do all of that stuff, she’d pretty much have to eat around the clock. That said, we both feel like that is the right next step to take.
It was great talking to all of the medical professionals and getting their thoughts and suggestions, especially on getting things ready for school next year. It’s so comforting to have those resources. They work with more EB kids that anyone else, so it’s great to pick their brains.
Ella had been requesting shrimp for dinner, so after the clinic we headed out to a local hibachi place. I have to be honest…the food was good, but it was no Hana Tokyo. Anyone in Alexandria knows that Hana is the best hibachi on the planet!
Friday our plan was to go to the hospital to get Ella’s blood work, then head out for a fun family day. Unfortunately those plans got ruined once we had the blood work done. Ella’s iron level was really low…really low. This is common for EB kids and it’s even common for Ella. She takes A LOT of iron every day (and eats a lot of red meat) and had an iron infusion after her surgery in August, but due to constant open wounds it’s really hard to keep her iron at a normal level. So we ended up spending the day in the hospital while Ella got another iron infusion. Ella was a trooper through it all. Hopefully this will give her more energy and help her heal faster. The bad news is that it looks like these infusions are about to become the norm…at least for a little while. It would be awesome if we could get her iron to a normal level and be able to keep it there.
The best line of the weekend was while Ella was getting her iron infusion. She had already eaten tilapia, a hardboiled egg and a big, soft pretzel. She said, “Mommy, I’m hungry.” I asked her what she wanted to eat and she looked at me completely serious and said, “A steak.” See what I mean…this child can eat!
I don’t want to sound negative, but I want to be realistic. What is becoming clear is that while Ella is doing great with her EB, there are a lot of things that are starting to catch up with her. She’s in a lot of pain all of the time. Her body is starting to have a lot of side effects of EB (the iron just being one). This horrible disease is really starting to take its toll on her little body. Please continue to pray for Ella and all the kids who fight EB. Pray for a cure.