I am not sure how I should post the next set of events.... I just know that I have a bunch of photos and videos and events that are ready to be posted. It looks like the last time I posted was right before Elizabeth decided she wanted to check out Primary Children's Hospital. That is where I will start this long post.
Hospital Admission
Elizabeth had what appeared to be a normal winter cold over a weekend in March, but it took a turn for the worse when her fever stayed high, her cough deepened, and she refused to eat or drink anything on Sunday evening. By Monday morning, I was convinced that it was pneumonia and I feared that she was becoming dehydrated, so I made a doctor's appointment first thing Monday morning. The docs sent her over for chest x-rays and did a couple of breathing treatments (nebulizer) in the office. Her oxygen saturation was low and she wanted nothing to do with fluids, so she bought herself an admission to the hospital that morning. As we were walking over to the hospital, the radiologist called and said the chest x-rays did not show signs of (bacterial) pneumonia. Good news, I guess. But bad news, because we couldn't just given her an antibiotic. It was a viral infection and we had to wait it out. Turns out that she had RSV and Coronavirus.
She perked up quite a bit once she got a bag of IV fluids in her, but her oxygen saturation dipped so low every time she laid down and started to fall asleep. That would set off an alarm and the nurse would have to come in and bump her oxygen up higher.
All in all, she was not the most patient patient! She ripped the oxygen cannula out of her nose many, many times. She even managed to get it off when we used the extra-strong stickers, leaving nasty welts across her cheeks. She was panicked by the IV, which was inserted on her right hand, the hand that she sucks for comfort. She constantly got tangled in all of her cords (IV on hand, sensor on foot, oxygen in nose). She tried to climb out of her crib. She screamed bloody murder anytime the nurses had to take her blood pressure or adjust the sensor on her toe. She insisted on wearing her shoes the entire time -- probably because it was the only thing that was familiar to her.
At about 330 am, after she had not slept more than 5 minutes since she was admitted that morning, the nurses finally agreed with me that she would sleep better if they brought in a regular hospital bed where she could sleep next to me. At about 415am, they removed the crib and brought in a regular hospital bed. Ah. She finally fell asleep, and so did I (kind of!). I hated that night.
By the next morning, she was eating and drinking on her own. Her fever was not as high. And, the nurse did not need to suction her over night. So she was discharged around lunch time the next morning. We all agreed that she would probably recover better at home since she would be more likely to actually rest. And, we are only a few minutes from the hospital if we needed to come back for suctioning. After a few nights of sleeping with her in the recliner and lots of TLC, she was back to normal. It was just a cold, but a nasty one!
Speaking of Health
Carolyn has not had another infection. She has recovered fully from surgery. Her post-surgical follow-up appointments went well. We are confident that the reflux is now gone, on both sides. Because of this, we were able to wean her off of all antibiotics.
Recent ultrasounds showed that the surgical site was healing well, but that there is some new scarring on the right kidney, which is not surprising given the difficulty we had in treating her last infection in November. Scarring is permanent damage to the kidney, but it is not horrible and should not affect her renal functioning long-term. The ultrasound also confirmed that her bladder has lots of thickening. According to the urologist, her complaints of bladder spasms and inability to keep dry pants are very real. And, as she said, her bladder is not happy. She has been taking a medicine to help soothe her tired and stressed bladder, but we are adjusting the dosing to get it just right. When the dosing is high, the bladder functioning improves, but she has side-effects such as dysregulation of body temperature and dehydration. If the dose is lowered, she has less swings in body temperature, but more bladder spasms. The medicine works best when she is fully hydrated.
However..... throughout the past year and a half, Carolyn became afraid to drink. She was convinced that drinking is what made her experience such pain and spasms and that the infections came when she drank. As a result, she drank very sparingly. I was aware of this, but as we were adjusting her medicine dosing, it was becoming so much more apparent. She was always borderline dehydrated, which made her constipated and which exacerbated the bladder spasms and other side-effects of the medicine. We tried reasoning with her, telling her how important it was to drink. She listened. She even would tell us how important water was, but still would only sip the smallest bits, very infrequently throughout the day. There was fear.
I realized that I was going to have to "bribe" her or do something creative to get her past this psychological disconnect. I didn't know how, but I was willing to do just about anything to get her to start drinking because that was the missing link in her recovery and long term health. With her help, I came up with an elaborate award system. She wears a series of rubber bands on her wrist, and moves them to the other wrist throughout the day as she does something good for her health/body. The yellow bands track how many times she pees in a day. The blue ones track how many glasses of water she drinks. And the red one tracks her hot flashes, cramps/constipation, and bladder spasms. She added one green band that is intended to make her smart; it tracks whether she has done reading/writing work that day. She insisted on that one, so the system was not just about her being sick (poor thing - she really is sick of being sick). She and I also agreed that we add one purple band that she can move at the end of the day, if she was honest that day about her goals. It is also a reminder to do our "thankfuls" each day, where she and I both have to say at least one thing that we are thankful for that day. Each day she can earn up to 4 stickers. The stickers can be cashed in at the bank, where there are various prizes that are worth different amounts of stickers.


Immediately, she responded to the system. She worked hard the first few days because she wanted to buy the tube of pringles, so she could share them with Steve. Next, she saved up for the "party in the bathtub" (a light to put in the bathtub, which is really quite cool!) that she wanted to share with her sister.

When I saw her eyeing a toy horse-trailer at a store one day, I had an idea for the next layer of the game. As I finished up what I was doing at the store, I asked her to put the toy back and she did without a fuss. As we walked out, she asked if I had seen what she was looking at. I agreed that it was pretty cool. Then, without saying anything to her, we walked back into the store. I grabbed the horse trailer and took it to the counter to pay for it (cost - $11). When we were walking out the second time, I asked her if she wanted the toy and whether she was willing to earn it. Oh yes, she said! And this is when the STAR was added to our system. She could earn one STAR per day, in addition to the 4 stickers, if she had dry daytime pants/pad. She and I both knew this one was going to be hard for her. We agreed that the horse-trailer should have a price tag of 7 stars. It only took her 10 days to earn it. Her determination was fierce.

The prizes are nothing much, but they have absolutely transformed her. She drinks water. Her bladder spasms are hardly noticeable. She is having fewer side effects of the medicine. And, in fact, she told me the other day that she feels like a "normal" kid again. At that, I hugged her so tightly, hoping that maybe I could erase some of the pain and worry that she has had to deal with this year.
This system has not only helped her adopt healthful behaviors that she can carry with her throughout life (drinking water, peeing regularly, and eating foods that are best to keep her body regular), but it is helping her work on math skills by making her budget and save for things she really wants to "buy". Who knew?
Spring Break 2014
This never happens .... My university spring break lined up with Carolyn's spring break, so she and I had a week of adventure. Everyday, she wrote about what we did in her journal.
On Monday, we went swimming and to a movie. On Tuesday, we went to get manicure and pedicure. We went to the library too. Wednesday - we went tubing. On Thursday, we went skiing. On Friday, we went ice skating. I got to talk to on the radio (Hi Mindy). We also ate pancakes with Elizabeth.
I, of course, tried to document it with some photos and videos.
A note about her radio debut. I have sirius XM in my car. We often listen to "Kids Place Live." Carolyn called in to the Absolute Mindy show for the Three Word Movie Review. She reviewed Wizard of Oz with the three words Friendship, Fantasy, Fun!
The Little Playhouse
Steve made progress on the "little house" taking it from a construction zone to a place where the girls constantly want to be. It is not done, but it has been stocked with crafts, which means that the girls can entertain themselves while we clean and finish up some of the remaining projects.
My Mom & Dad Visit
We danced. We laughed. Steve and I got away for a one-night vacation (this is the first time we have been away together since the girls have been born!). Lizzie took a liking to "Pa-Paw." Carolyn and Grandma painted a keepsake urn for Leo. My dad helped us put up the trim on the windows in the little house. I do not remember what else we did, and I have very few photos on my camera to help jog my memory!
I Love My Job
Especially on days when I am surprised by announcements like this.
Slumber Party
Carolyn has never had an official slumber party with a friend -- at least not one that is planned just for fun! She invited Annie. We did crafts. We watched a movie (Frozen). We made noodle octopus for dinner (poke dry spaghetti noodles through hot dogs; boil it all together). We had ice cream sundaes before bed and waffles in the morning. They were asleep by 10 and slept until almost 9, so I consider that a a success!
The Paint Mixer
It is rare, but I got out with my friends. We went to the "Paint Mixer," one of those places where you drink wine and paint a picture on a canvas.
Lizzie's Day Out
It always seems that Elizabeth has to tag along to whatever Carolyn is doing..... we never get to do things just for her. I am not sure where Carolyn was (perhaps skiing with Steve), but I got to spend an afternoon with her at the Children's Museum. She loved it.
Antigravity Yoga
Recently, Carolyn was invited to a birthday party to do "antigravity yoga" .... you hang and swing in hammocks while doing yoga. After 90 minutes of this, the girls were exhausted.
Easter
The day started early -- at 445 am -- when the alarm went off. Although we talked the night before about going to the sunrise service on top of the mountain, I really wanted to roll back over and forget about those plans when I heard the alarm go off. Begrudgingly, I got out of bed and walked upstairs to ask Carolyn if she still wanted to go (I was really hoping that she was a zombie and would not want to go). Much to my surprise, she shot out of bed and started getting ready. I guess we were going. Steve and Lizzie stayed home, but Carolyn and I were on top of the mountain by 6am, as the sun was starting to light up the sky. At first, Carolyn thought it was cool to be up there, especially seeing how it was still dark in the valley to the west, but wanted to take the next tram down. I convinced her not to go down so soon (the hot chocolate probably did the most convincing), and we ended up staying up there until the very last tram. She is a mountain girl, with an adventurous spirit!
When we came back down on the tram, she and I decided to go to the breakfast buffet and then went to the easter egg hunt. All of this, and we were home before 930am. Wow.
Later in the afternoon, we went to our friends' house, where there was an easter egg hunt for the kids and a beer hunt for the adults. Carolyn & Elizabeth wore new Indian dresses from RJ.
Pretty crazy that in a single day, we had two easter egg hunts -- one in the snow, and one in the green grass of a warm spring day.
Giggles
Just a day in our house. And more of my steady camera work.
Holi Festival
The Festival of Colors and Love, a Hindu tradition marking the end of winter and welcoming the "colors" of spring. Steve and RJ took the girls. I was flying back from Boston, where I was for work.