Saturday, April 9, 2016

House of Nerds

This week, Trotwood got his first pair of glasses! For the past few months, when we read stories together, Trotwood would hold the book just a few inches in front of his face to read. When I would ask him to hold the book in his lap, he said he couldn't see the words. Mr. Rochester and I both wear glasses so I knew it was only a matter of time before some sort of vision impairment manifested in Trotwood.

Somehow, when I switched jobs last year, I managed to overlook signing up for vision insurance. Oops. I didn't think we should wait to get Trotwood's eyes examined so I looked into going to Sam's Club optical. Eye exams and glasses were very reasonably priced there and Trotwood had a good experience overall.

Wednesday, Trotwood picked up his glasses after school and Thursday was the first day he wore them to school. He was so excited about the glasses because they have skulls on them and he thinks the skulls just make the glasses so cool. After school on Thursday, Trotwood came home and said a little girl in his class called him a "nerd" because he was wearing glasses. I told him all the great things about nerds and how being a nerd is actually a compliment. And, I also confessed to him that his dad and I are nerds and proud to be called nerds. So, the next time someone calls him a nerd, he just needs to say, "Thanks." He seemed really happy after our discussion and honestly, he wasn't too distraught to begin with.

On Thursday after school, I took Trotwood to the library for an after school workshop on science experiments and he loved it! He was especially fascinated by the Jacob's ladder electrical experiment and the electrical arc it created. Here he is doing nerdy science:

For the past few years, Trotwood has said that he's wanted to be a scientist when he grows up. I hope this dream of his continues to grow with him as he gets older and that he embraces any nerdiness that comes with it.

Tuesday, March 29, 2016

Longer days of sunshine

The weather here has been gorgeous lately so Trotwood had the brilliant idea that we go to the park tonight after dinner. I love love love when the days get longer and the weather gets warmer.

We met up with Trotwood's best school friend at the park and everyone just enjoyed being outside. Little Dorrit kept climbing up the slide at the park the wrong way so she could slide back down. It was actually pretty impressive to watch her!

Monday, March 28, 2016

Just another appointment

Little Miss had a hematology appointment today and we had a great talk with her hematologist. Little Dorrit still hasn't reached the 20 pound weight mark so she can't get a port yet. It's been over a year now since she had her surgery to place her central line and central lines aren't supposed to last forever. We are hoping that she will be able to get a port before she has to have the central line replaced, but we would love to explore the possibility of not having a port or a line. Ooh, twist!

Back in early February, something really exciting happened. A woman in Canada who has a young daughter with homozygous protein c deficiency found me on Instagram because I used #proteincdeficiency. She then commented on my blog and we started emailing each other. I can't tell you how excited I was to find someone else to talk to about this! Her daughter uses the same medication as ours but it is administered differently. And they only give her the medication every other day instead of twice a day like we do. Most interestingly, her daughter has never had a central line. Our hematologist is getting in touch with their hematologist in Canada to learn more about all of this and whether a treatment like this would be possible for us in the U.S. It was just so neat to finally connect with someone else about Little Dorrit's condition because I felt like I'd already scoured the Internet looking for this. And through the magic of social media, someone found me!

Sunday, March 27, 2016

Happy Easter

Happy Easter, everyone!



Unfortunately, I failed to capture a family photo of all of us in all our spring attire at church today so these photos will have to do. Next year, I'll have to remember to plan ahead some so we actually capture pictures before church. Foolishly, I had the idea we would take some pictures after church but that turned out to be a lofty goal indeed since I somehow forgot that our 18 month old barely makes it through the three hours of church and always falls asleep in the car on the way home every Sunday. And the first thing the six year old does each Sunday afternoon is shed his church clothes in exchange for an adult sized T-shirt which he prefers to run around the house in. I'm sure if we told him it actually looked like he was wearing a T-shirt dress, he might actually put some pants on because only girls wear dresses. But, it's the sweet little things like that and the way he mispronounces "calculator" (klak-a-lator) that remind me that he is still just a little boy.

I know it's been a few months since I've written on our blog. Ha! And I think something I wanted to do this year was to blog more. But I think I just got carried away with life. I do enjoy writing and many things have happened in these past few months. I will try to catch you all up in my next few posts. For now, I will just close by saying we are all healthy and happy. And today, I am grateful #becausehelives.

Saturday, January 16, 2016

Flowers

My sweet, thoughtful sister sent us these beautiful flowers in remembrance of our oldest daughter who would be eight years old today. We feel so loved.

We miss her and love her so much.

Saturday, January 9, 2016

Birthday

Happy birthday to our dear Betsey Trotwood. We love and miss you so much. Thanks to your younger sister, we now have medical answers to why you left us so early. We think of you often and wish you could be with us.


Friday, January 8, 2016

A very long night

Well, after a really long night but a super short stay at Arkansas Children's Hospital, Little Dorrit, Mr. Rochester and I finally made it back home this afternoon. Thursday night, I was about to give Little Dorrit her medication and I looked down and saw blood on the outside of her central line. Mr. Rochester examined it and found a small hole in the line which meant that one of us needed to take Little Dorrit to the ER at the children's hospital three hours away to get it repaired. I was going to stay home with Trotwood but after some consideration, we thought it would be better if we both made the trip to Little Rock. By the time we got to Little Rock, it would be really late and it is absolutely exhausting taking Little D. to the ER in Little Rock alone. Since we were pretty sure we would be able to come home the next day, we asked some friends if they could keep Trotwood for the night and take him to school in the morning. Of course, he was ecstatic to be able to go and sleep over at a friend's house!

Mr. Rochester literally sped to Little Rock and shortly after we got on the road, a police officer pulled us over. When he asked us what our hurry was, Mr. Rochester explained our situation. The officer clarified that it was an emergency situation and then said, "Put on your hazards and I'll tell them you're coming." Basically, he gave us permission to speed. So we did. We drove between 90-100 mph to get there and made it in record time. We arrived at the ER around 9:45 pm and waited and waited in the ER until we were admitted to the hospital around 4 am. One of the reasons it took so long to get us admitted is because they didn't know if we actually needed to be admitted or not. Usually, they can just repair central lines in the ER but since it was so late at night, the staff on call weren't exactly sure of the procedure. Then, they thought they could repair it but they couldn't find the repair kit and said she might have to have surgery and just get an entire new central line, which is definitely not the thing we wanted to have happen. 

So, since no one knew what to do, they poked her with an IV so we could give her medicine to her and then they admitted us. They were going to admit us to a pediatric ward but we mentioned that we usually go to hematology/oncology and they put us there. I'm so glad they did because the staff on that floor know Little Dorrit and they all know exactly what she needs. Also hem/once staff are just plain awesome. The minute we showed up two staff members brought in two brand new toys for Little Dorrit. Many of them even remembered her from the last time we were there. One of the nurses even brought in some pajamas and cut the arm off of the pjs so Little D. wouldn't pull on the clamp on her line and we wouldn't have to ruin any of the clothes we brought.

We were finally able to get a few hours of sleep and then around 10 am, a surgery nurse came and repaired her line. With the repair kit that no one in the ER could find. As you can see, Little Dorrit was less than thrilled about the whole thing but honestly, the worst part for her was just wearing the mask (and the IV poke). 
Shortly after the repair, we were on our way home equipped with the the surgery nurses' pager numbers and instructions on exactly what we needed to do if this happens again on an evening or weekend (which is, of course, always when it happens).

Little Dorrit did really well at the hospital although I am glad that it was a very short stay. Keeping a toddler from pulling on IV lines is quite a challenge.