Wednesday, September 17, 2014
Here we are, on our 3rd week of 2nd grade!
Ella was nervous about this year because she was really afraid that her teacher would ask her to do things she doesn’t know and she was afraid that she wouldn’t be able to ask questions. Apparently at the end of last year someone said that in second grade you have to be “first time listeners.” Ella took that to mean that she could never ask a question. I tried to explain that the person meant that she just needs to pay attention. It’s ok to have a question if you don’t understand something. Ella wasn’t convinced. It didn’t help that we were in Cincinnati during the school open house, so we didn’t get to meet her teacher until the first day. I tried to reassure her by telling her that her teachers first name is Katie and I have never met a Katie I didn't like.
Joe and I broke the rules and walked her to class on the first day (parents aren’t supposed to do that) so that we could meet her teacher and see her classroom. The teacher was incredibly nice and Ella already had several friends in the class (although her best friend isn’t in her class).
At the end of the day when I picked Ella up and asked how her day was, she responded, “So great!” What a relief! Every day she has responded that it has been a good day. Some days she even says, "AWESOME!" So far her favorite activity is when they get a “Brain Break” and get to listen to music. We have heard nothing but glowing remarks about her teacher (who just got married this summer), so we are very relieved with how the school year is shaping up to be.
Last night was the school Open House, so I actually got to visit Ella’s classroom and talk with her teacher for a few minutes. She has some good ideas about things to do for Ella, which I’m excited about. My favorite was seeing Ella’s self portrait. She even included little pictures of Sabrina and AJ.
So far 2nd grade is going great! We are all excited to see what the year holds.
Wednesday, September 3, 2014
Last week we took our last trip for the summer. We headed up to Cincinnati for Ella’s yearly check up. This was a whirl wind trip with us arriving Wednesday morning and leaving Friday evening.
In a nutshell, the appointments went terrific! Everyone is really pleased with how Ella is doing right now. We only had a few concerns to discuss and both Joe and I feel confident that we can work on those and get them taken care of soon.
I didn’t really mention it here, but several months ago we switched Ella to what is called a blended diet. Basically, with her g-tube she had been eating what she wanted by mouth during the day and getting a pump feed of high calorie formula overnight. Over several months she started developing very severe stomach issues. She stopped eating by mouth altogether because she constantly complained of her stomach hurting. She would wake up almost every morning and throw up (to the point where she slept with a bucket next to her head so that she could just grab it if needed). It got so bad that her body seemed to stop digesting the formula altogether. It just kept building up in her stomach and would sit there for hours.
I’m not going to criticize high calorie formulas because they work well for a lot of people and have been life sustaining for so many kids. Unfortunately for Ella, they just weren’t working anymore. Several people had encouraged me to give the blended diet a try, but the thought was too overwhelming. I was massively pregnant with AJ and wasn’t in a mental state to add yet another “job” to my day. We switched formulas to something different, that didn’t work. We tried slowing down her pump feed, that didn’t work. All I knew was that my sweet girl felt and looked terrible.
A blended diet is exactly what it sounds like…blended food. You take whatever “real” food you want to and blend it up so that it can easily be pushed through her g-tube. Trying a blended diet was my absolute last resort. I was at my wits end and honestly didn’t know what else to do. This was the only thing I hadn’t tried yet. So I decided to give it a shot. My first step was really drastic. I cut out everything that was man made. If I couldn’t read the ingredients and understand what they were, it wasn’t going in her body. I also cut out all dairy. For several weeks all she got in her body was meat, vegetables, fruit, eggs and goat milk (yes, goat milk).
Within a week her stomach aches were gone and she stopped throwing up. Her skin was still terrible, but she acted like she felt so much better.
Within a month her skin started to heal up. Ella had a wound on her chest for over 3 years. I had tried everything I could think of to get it to heal. Prescription medicine, holistic treatment, or topical ointment…nothing worked. After a month of a blended diet, the wound went away. The area is still fragile and opens very easily, but the fact that it heals at all is amazing to me!
I really believe that the single change to a blended diet has been the greatest benefit to Ella lately. With this change, her doctor visit was smooth sailing. Yes, there are some things we need to address, but they are “easy” fixes (as if anything with EB is easy).
She has actually gained a pound (she still needs to gain more, but that’s better than a loss) and at the very least, she’s stable from last year. She doesn’t need any procedures right now, which is always a good thing. She has good hand function and her mobility is decent.
At the eye doctor Ella was the ideal patient. Even though she hates getting her eyes dilated (who doesn’t right?), she was calm and didn’t cry when they put the drops in her eyes. Her lazy eye is doing much better and they were happy that the glasses have corrected any eye crossing she used to have.
We went to a new dentist this year. Usually we go to the dentist at the hospital, but we had been recommended to see another dentist in Cincinnati who has her own office outside of the hospital and works with a lot of EB kids. It was funny because when I was signing her in the medical history sheet actually had EB listed. I have never seen that on a medical history sheet before, which tells me that she sees several EB kids. The dentist was AWESOME! I wish I could go to her! She was so gentle and calm with Ella. And Ella handled it all like a champ! Ella didn’t get one new boo boo in her mouth, which is amazing. She said Ella’s teeth are looking good and her adult teeth have plenty of room (for now). She even took a few minutes to look at AJ’s new teeth and told me how to brush them and when to work on eliminating the thumb sucking.
After all of Ella’s doctor appointments we decided to visit the Creation Museum in Kentucky. We had heard of the museum in past visits, but never had the opportunity to visit. Both Joe and I were extremely impressed! We kind of expected it to be corny, but it wasn’t. It was very well done and I highly recommend visiting if you get a chance.
We flew home late Friday night and slept in our own beds that evening. It was a quick trip, but it was good and we were really glad to go before school started.
Friday, August 22, 2014
I have decided it's time to give you an update on each of us. Nothing too fancy, just a rundown on where we are right now.
I can hardly believe that my precious girl starts 2nd grade in 2 weeks!!! I still marvel at all of the things we never thought we’d see. Phooey to all of those doctors who told us she wouldn’t live through the night…then that she wouldn’t live through the week…then that she wouldn’t live through the month…then that she wouldn’t live to see 2 years old…and so on.
If I had 1 word to sum up who Ella is right now, I’d say she’s curious. Ella asks questions all day. She asks questions about everything…what words mean, why something does what it does, why do we need to do an activity, why is AJ crying, why is Sabrina excited, why did the air conditioner click on, why did the air conditioner click off, what is that beeping, who is making that noise, who is the person on TV, what am I watching on TV, why am I watching that show, etc. Who, what, when, where, why and how ALL DAY LONG! One day I tried to count how many questions she asked, and I couldn’t keep up. I find myself torn between loving her curiosity and loving that she has such a desire to know things, and getting annoyed that I am constantly answering questions. In the morning I am at my most patient. She can ask me 100 questions a minute and I will answer them all calm and direct. By 3:00 my patience is waning. I still answer her questions, but if I’m in a private place I will sigh before giving my answer, or sometimes I will tell her that I am in the middle of something else and will answer her in a minute. By the end of the day, I’m done. Just about the time I think I can’t handle one more question, Joe walks in the door and takes over.
Every day I remind myself that someday I am going to miss this. When she’s an adult and has moved out of our house, or when she’s a teenager and still living here but has decided that it’s not cool to talk to mom and dad, I’m really going to miss this. I try to answer all of her questions, if I know the answers or can think about how to explain them (I mean really, how do you define the word “because?”), but some of her questions border on being nosey. She wants to know everything…EVERYTHING. I don’t want to discourage her curiosity, but there are some things she just doesn’t need to know.
Ella is at that fragile age where she’s not quite a little girl, but not quite a tween. She still loves princess movies (let me count the times I have watched Frozen, or listened to the CD), but she no longer dresses in her princess clothes every day, and rarely plays with her princess toys anymore. She’s still very into girl superheroes. She isn’t quite sold on American Girl…or dolls of any kind really. She loves to read, is obsessed with cooking shows and wants to be a chef when she grows up, and thinks that being a big sister is the best thing that has ever happened to her…although she has made it very clear that she does not want any more kids because, “They are too much work!”
AJ is a whopping 8 months old! He went from scooting to crawling in a matter of 2 days and has been on the go ever since. Within a day of crawling he started trying to pull himself up. We always knew that having AJ would be a completely different experience than it was with Ella, so we were sort of prepared for this. From 6 months on, Ella was the kid that if you told her not to do something, she wouldn’t do it. If you told her not to bite, she never bit again. If you told her not to touch something, she never laid another finger on it. AJ is definitely not that child. When he bites and I say not to (especially when nursing…yowza!) he will look at me and give me the biggest smile and start to giggle. If I tell him not to touch something, he looks right at me then goes right along grabbing for it. The kid is a mover and a shaker and is into anything he can get his hands on. I told Joe that we are actually going to have to buy baby gates and baby proof our house! We never had to do that with Ella.
AJ loves to eat! He easily eats 2 containers of food per meal, and is making a pretty easy transition to chewable foods. So far he loves carrots, meatballs and pancakes, but he’s not so excited about baby rice puffs. He has 2 teeth on the bottom and just last week the top middle 2 started poking through. Now the 2 sides on top are about to make their debut. No more sweet gummy smile.
All of these teeth have given AJ that awesome perpetual runny nose. No matter how many times I wipe his nose, AJ still manages to have snot all over his top lip. This ultimately leads to the dry snot look. Yes, it’s just as disgusting as you think it is.
Due to his love of food, AJ is quite the chunker. He’s filling out 12 month clothes easily, and wears some 18 month clothes. We have his 9 month check-up in a few weeks, so we’ll see how much he weighs and how tall he is.
Joe and Katie
Joe has been gone this week for work travel. There is nothing like work travel to remind you how valuable your spouse is. Joe offered to ask someone to come over and help, but I was adamant that I could handle it on my own. I have now promised that I won’t make the same mistake a second time. With 2 kids, one who is into everything, I really need a second set of hands around here. Joe got home last night around 1 am, and Sabrina and I were so happy to see him walk through the door.
I’m not sure about Ella, but I am ready for school to start back up. It has been a great summer full of wonderful activities, but it’s time to get back into a family routine. AJ needs his routine back. Mommy needs AJ to have his routine back. The poor kid has been shuffled all over creation this summer and is adjusting as well as can be expected, but it’s time to get back on schedule. His sleeping has been pretty erratic, which doesn’t bode well for mommy. I miss my sweet 4 month old that would sleep 10 hours without a hitch. Between massive growth spurts, 6 new teeth, and horrible naps due to constantly being in motion, his sleep schedule is a mess. I am confident that once we are back in a steady routine, he will be back to his awesome sleeping self.
I can't leave out the greatest dog in America! She is just as sweet as ever! Unfortunately Sabrina hurt one of her hind legs a couple of weeks ago, so Joe had to take her to the vet to get checked out. She spent a week on pain medicine and taking it easy (no dog park for our sweet dog) and she seems to be doing better. She's still a little tentative with her leg, and sometimes when she's going too fast up or down the stairs you can tell that it starts to hurt, but she's doing a lot better.
She has finally accepted AJ as one of our own and has even started trying to play with him. He will crawl toward her, and she will run away, then come back and play, then run away, he will crawl after her and the whole thing starts over. She kisses his face and loves to lick his feet and hair. No, I don't mind him getting dog slobber on him. If dog slobber hurt a kid then I would have been in trouble long ago. Besides, I read an article several months ago about how kids who grow up with dogs are healthier.
There you go. That’s the update from the Murray house. We’re all doing well and loving life.
Friday, August 15, 2014
Earlier in the month we spent 5 days and 4 nights at the incredible Gaylord Opryland Hotel in Nashville, TN with our extended EB family.
It’s hard to believe that just a few months ago Joe and I were discussing whether or not we should even attend the PCC. I went when Ella was 3, but it was a crazy visit and for various reasons we didn’t get to actually participate in much of the conference. The next PCC (Patient Care Conference) was in Orlando, FL when Ella was 5. Due to several reasons we decided not to attend that year. So given those 2 experiences, we weren’t sure how important it would be for us to attend. We ultimately decided to go because Ella started asking about other kids with EB. She wanted to know why she didn’t see any other kids that look like her. We decided that the PCC was the perfect opportunity for her to meet other kids with EB and know she’s not alone.
I will never forget the look on Ella’s face when I told her that I had signed her up for the PCC kid room. I told her that it was a special room for kids and that several of the kids in the room would have EB just like she does. She got a HUGE smile on her face and said, “You mean I won’t have to tell them to be gentle because they will already know? And they won’t stare at me because they will have EB too!”
We arrived in Nashville on Wednesday July 30 and headed straight to the hotel. I can honestly say that this is the most amazing hotel I have ever visited! We have a Gaylord in DC and it’s really nice and pretty incredible, but it’s about 1/3 the size of the Nashville Gaylord. This hotel even has a boat ride INSIDE THE HOTEL! Seriously, it was amazing.
It was wonderful seeing old friends and people who I have only met online through my EB groups. Seeing these people it’s like we have an instant bond. There’s a language that only we speak. There’s a life that only we understand.
I think the biggest transformation I saw was in Ella. Oddly enough, even though we live in one of the most populated parts of the country, there aren’t any kids near us that have EB. There is a boy in Arlington, but he has the most mild form of EB and his body doesn’t have to be wrapped at all (if you saw him you wouldn’t even know he has EB) and we’ve actually never met him. There was another baby about an hour from us, but unfortunately she lost her battle with EB. So, as far as we know, Ella is it. The closes family we know of is about 2 hours away in Maryland. We have been fortunate to get to know them and see them several times, which has been good for Ella, but she’s only a baby (not yet 1 year) and Ella really wanted to meet other kids her age. I make an effort to meet up with families when we’re traveling, but for Ella it just isn’t the same. She needed to know that there are other kids out there just like her.
On Thursday morning when I dropped Ella off at the kid room it was the first time in her life that she walked into a room, alone, without hesitation, and confident. She didn’t ask me 100 times when I would be back for her. She didn’t shed one single tear or even act like she wanted to cry. She didn’t even hesitate. I gave her a kiss on the head and told her I would be back soon. She said “ok” and walked in. After the first morning in the kid room I picked her up for lunch. We were heading to the lunch room and I asked her how she liked the kid room. Without hesitation she said, “It was awesome!”
Ella walked a little taller that week. She knew that no one was staring at her boo boos. I would offer to push her somewhere in the stroller and she would say, “No, I can walk.” She knew that it didn’t matter if she walked slow because the other kids with EB were walking slow too. There was no pressure to keep up.
Joe and I had prayed that during our time in Nashville, Ella would meet another little girl close to her age that she could befriend and stay in contact with. Unfortunately that didn’t happen. She played with other kids in the kid room, but didn’t really connect with anyone. While we were disappointed, we decided that since it was her first time it was probably good that she just got to observe and see that she’s not alone. Hopefully during the next conference (2016) she will go in and really be able to make some life-long friendships.
It was equally wonderful for Joe and I to get to hang out with other EB parents. On Wednesday and Friday nights Joe went out with several of the dads to play poker and talk until the wee hours of the morning. On Thursday and Saturday nights I went out with several of the moms and talked the night away. Joe joked that we need to buy a big plot of land and create an EB compound. That way we can all live together all the time!
All in all, it was a fabulous trip. While we didn’t get to see anything outside of the Gaylord, I know Nashville is a beautiful city and we can’t wait to go back and do some of the touristy stuff. The conference was full of great information on practical issues (blended diets, wound care, etc) and on up and coming research that is being done. We continue to pray for a cure and are confident that there will be something available in Ella’s lifetime. We love and miss all of the incredible people we met there and can’t wait to see everyone again in 2 years…hopefully sooner.