Tuesday, October 28, 2014

Let's talk kidneys

About twice a year, Anna's bladder and kidneys are analyzed via ultrasound to ensure that they are growing properly and look okay.  After her last ultrasound this past summer, Anna's urologist suggested that she undergo some further testing in the form of a VCUG and a urodynamic study.  We are not strangers to either test.  Anna (and most others with spina bifida) has what is called a neurogenic bladder, which means her bladder function is different than yours or mine because of nerve damage.

We try to schedule her appointments and medical tests so that she doesn't have to miss school. Missed school time or days are excusable with a doctor's note and in Anna's case, we would be able to obtain a note and have that time excused.  However, the girls don't like missing school and I don't want Anna to be bummed out that she missed something at school because she has spina bifida, which is how she would think of it.

First up was the VCUG.  Lucky for us, there were some openings at the end of August in Waltham, so not only did we not have to drive into Boston but Anna didn't have to miss any school.  I brought Anna to that appointment and she was such a rock star.  While the procedure itself is fairly painless, it can be extremely uncomfortable.  Her bladder was filled, via a catheter, with a dye/contrast solution and x-rays were taken.  At one point, she was looking at me with such discomfort in her eyes.  I felt terrible.  And to add insult to injury, when they were done and told her she could empty her bladder, she couldn't.  She had to wait for me to cath her.

octt28a

We called that her special princess gown.  

When Anna was a baby, she was diagnosed with reflux (grade 2) in her right kidney, which means that urine could back up into her kidney from her bladder.  She had a VCUG in 2008 and another in 2011.  Both showed no signs of reflux.  I thought, maybe stupidly, that reflux would not be an issue in the future.  Unfortunately, this VCUG showed signs of reflux in Anna's right kidney.  After we had just fought to have her dosage of antibiotics reduced to every other day, it was changed back to daily.  Her intake of ditropan, which improves bladder function, was increased from twice a day to three times a day.

Because the VCUG showed signs of reflux, the urologist told us that he would like Anna to undergo a new procedure (for her) to check for scarring in her kidneys.  I have to say that this threw me off guard.  I knew that this could happen but I wasn't expecting to hear that it was a possibility with Anna.  

We were able to schedule this scan for Columbus Day.  The procedure starts with an injection of some type of radioactive (yeah, awesome, I know) dye into her bloodstream and then a three hour wait before a scan of her kidneys can take place.  Anna didn't cry when they pushed the needle into her vein.  She gave me that look again though.  Poor baby.  The nurses said she did better than a 15 year old boy.          

octt28d

octt28c

The scan part is painless but for the fact that her body was wrapped tight in a sheet so that this machine

octt28b

could rotate around her.  She had to be very still for 16 minutes.  Well, I can't remember exactly how long it was.  I think it was 16 minutes. Could have been 18.  She did a fantastic job and the scan was readable. We had been told that in some cases, they have to re-do it if there's too much movement.

We've been trying to schedule a follow-up appointment with her urologist. He has the equipment in his office to perform the urodynamic study so we obviously want to schedule one appointment in order to limit missed school time. He only does that type of testing on certain days of the week so we are in a bit of a holding pattern right now. But Rich was told over the phone that the preliminary write-up from the scan stated that there were no signs of scarring in Anna's kidneys. Yippeee!!  I'm keeping my fingers crossed for more good news.  Or no news because sometimes no news is good news.


If you haven't read this, here's a related post from a few years ago - Everything you need to know about cathing

Sunday, October 26, 2014

There's no shame in having spina bifida

The girls hosted their second annual Halloween party today.  Interestingly, they didn't ask to go out and purchase costumes this year.  Allie wore her Elsa dress from Disney but plans to be a gymnast for trick or treating on Halloween.  Emily was a '50s girl complete with a high ponytail and a poodle skirt Grammy made for her older cousin a few years ago.  Anna recycled a costume from a few years ago and was Dorothy.

So all the guests arrived and Anna in typical Anna fashion was just wearing the Dorothy dress.  After the craft portion of the party, the girls somehow decided to have a talent show while we waited for Rich to return with the pizza.  Almost all of the girls take gymnastics and that was a common theme of the talent show.  Anna opted to show off her bridge and as she was doing so, someone called out, "Hey, she's wearing a diaper!"

Here's the thing with a group of 7 year old girls - they're silly.  They want to be funny.  They giggle and try to make everyone laugh.

I was standing right there and as Anna collapsed on the floor from her bridge, I said, "No, that's just part of the costume."  I was super proud of Allie because she quickly added, "Yeah, that's just the bottom part of the dress," and started dancing around, drawing attention away from the situation.  Meanwhile, Anna ran to me crying.  I pulled her into the kitchen to calm her down away from everyone.  I didn't want it to a be a big deal and brought her upstairs, suggesting she find a pair of shorts to wear under the dress.

I've told Anna that it's okay if others know that she has spina bifida.  She doesn't see it that way.  She doesn't say why but I suspect she wants to be seen as "normal" or she fears being made fun of.

October is spina bifida awareness month.  The other night, I attempted to write a post but was having difficulty in doing so because those of you who read here regularly know that Anna has spina bifida and what I was writing, you already know.  Anna is a typical second grader who takes gymnastics and ballet.  She enjoys playing school with her sisters and their stuffed animals and dolls.  She's quiet but easily makes friends.  She's a sweetie.  She has spina bifida.  And that's okay.

octt26aa

This is Anna.  What we all see is a funny, smart, adorable, little girl.

Friday, October 24, 2014

{Disney} Animal Kingdom I

Because we had enjoyed our breakfast at Tusker House, located in Animal Kingdom, during our December 2012 trip, I naturally wanted to secure an ADR for this trip. I was booking our dining reservations late so it took a few weeks of sporadic checking and eventually an opening at 9:40 popped up for this particular day. The late time was to our advantage as it allowed us (most especially the girls) to sleep in. Our park arrival timing was perfect, somewhat due to us having our own transportation, and we checked in right on time. During our last visit, photos were taken outside the restaurant, before being seated inside, with Safari Donald. There was a PhotoPass photographer but a cast member offered to take some using my camera. (As you know, I refuse to buy PhotoPass photos.) This time, a cast member attempted to shepherd us into a photo line but when we saw that there was no character, we said no thanks. This change left a sour taste in my mouth, as did the hostess who I kind of felt was treating us like cattle.

dis31a

Ah, but the theming is so good.

After we returned from this trip, I discovered that Disney had Tusker House in some sort of trial mode while we were there which resulted in the cutback of characters at this meal.  I'm going to be honest here and say that it was a disappointment. Instead of the usual four characters (Donald, Daisy, Mickey and Goofy), there were three. Goofy was MIA. What was also disappointing was how rushed the character meetings were, which was due mainly to the handlers. We know that we need to have the autograph books open to the correct page and ready to go. The girls always have their books ready to go. One handler/cast member/vacation rusher suggested that I place the books in a pile on the edge of our crowded table, which was covered with condensation from our glasses. She was super pushy, grabbing at the books. I eventually took them and told her that I would hold them and give them to the characters the second they reached the table. She wasn't going to be the one dealing with the aftermath of a kid finding water smudged autographs later on.

dis31b

I'm thinking I should have switched to my wide angle lens.

dis31c

dis31d

dis31e

dis31f

The food (the most important part, right?) tasted okay. I admit that I was a bit frustrated with how long it took us to actually get our food from the buffet, which may have affected my taste buds. Tusker House has what they refer to as an "open buffet" which means that you don't have to wait in line, but instead can just walk right up and get what you want. Well, that's all fine and dandy unless there are people waiting in a line and someone cuts you. And that someone is a cape-wearing three year old with no parental supervision. I know we all parent differently but I was annoyed. My kids are seven and they tell me what they want and I put it on their plates.  They also know how to wait in line.  I've never met a teenager who says she doesn't know how to do buffets because her parents didn't let her when she was little.  I also witnessed a girl about the same age as mine, man-handle a plate and then return it to the clean plate pile with her parents standing right there watching.  They said nothing.

After our meal, Rich said that he would be fine if we never ate there again and Rich is a pretty laid back person. Much more laid back than I am.

dis31g

Rich had awesomely booked FP+ for the safari to coincide with our breakfast ending. We were a few minutes early so we checked out a gift shop.

dis31h

dis31i

The safari was enjoyable, bouncy and full of animal sightings. The girls always seem to like it. Next was a bathroom break and then we joined the line for the Festival of the Lion King.

dis31j

My poor attempt at an outfit shot.  Should have used the wide angle.

Festival of the Lion King was in the new theater and had changed a bit from the show we had seen in earlier years but it was as entertaining as before. When we left the theater, we discovered that it had poured while we were inside. Everything was wet, but quickly drying. We made our way over to It's Tough to be a Bug, which is a show we hadn't seen in the past because I didn't know if the girls would be afraid. They weren't. Anna was sitting next to me and I laughed for most of it because of how she kept jumping. Because of my awesome eyesight and lack of depth perception, the 3D thing didn't really work for me but I did think it was highly entertaining.

When we left Bug, it was moderately raining and the sky was completely cloudy. After the rain we had experienced the day before, this was not a welcome sight at all. We headed over to Flame Tree Barbecue hoping that the rain would pass. Our usual plan of attack at quick service restaurants is to decide what we all want and then leave Rich to order the food while Grammy and I find seating with the girls. I then return to help Rich carry the food back to the table. Allie had to go to the bathroom so Rich was left to juggle the food by himself. Thankfully, there is covered seating here because it freaking poured rain.

dis31k

I order the same thing - the chicken - and it never fails to satisfy.

Coming up - Animal Kingdom II. Will the rain ever end? Sob

Wednesday, October 22, 2014

This never-ending search for balance

Last Monday, Columbus Day, Anna was scheduled for medical testing at Children's Hospital Boston. This was a holiday for Rich. It was a regular workday for me. Regardless, I went with them because I wanted to be there for her and I knew that she would want me there. In addition, she needed to be there for 3+ hours and at some point, Rich was going to have to use the bathroom. So, yeah, it was just easier if both of us were there. Thankfully, we have the luxury of a Grammy who can watch Little Cats A and C so childcare was not a factor in our decision.

After the appointment, Rich and Anna dropped me off at the office. It was lunchtime and I pulled together some snacks to eat instead of spending time leaving the office for food. October 15th is a big filing deadline for me and I had a 5 hour meeting scheduled for the following day, so wrapping up open items was my priority that afternoon.

As with typical fall weather here in New England, it was chilly that day. Allie and Emily had visited a playground with Grammy while we were at the hospital and, I swear this happens every year when the weather turns, Allie began coughing the next day.  It's her asthma cough. She didn't seem to have a cold. Although later in the week, she sounded more congested but not with a full blown cold. We had to give her puffs from her inhaler for a few days. As Allie started to feel better over the weekend, Emily and Anna appeared to have developed minor colds.

Sunday morning, Emily puked. And then she puked again, and again and again. And then it stopped. I held my breath. Two hours later, she announced that she was hungry and ate half an English muffin. Almost an hour later, I gave her the other half. Thinking it was just a fluke, I carried on until she puked again. And then again and again and again. Now she couldn't keep anything down and she had a fever. It lasted all afternoon into the night. As Emily was vomiting, Anna decided that she had a cough and proceeded to spend the remainder of the day coughing. Do I think some of it was exaggerated? Yes. (Sorry, buddy.) I checked several times and she did not have a fever. So now I've got one kid puking and on the verge of dehydration and another who may or may not have a cough and I'm supposed to be at work the next morning.

Very early Monday morning, I decided that I could not, with a good conscience, leave Grammy alone with the girls, especially if Emily was still throwing up, and go to work that day. Thankfully, this is probably the only time of the year where I am not OMG busy at work so it wasn't that big of a deal but I had already taken a half a day a week earlier for Anna's appointment. Monday morning, I deemed Anna healthy enough to go to school, despite her protests. She wanted to stay home because I was home. Emily still couldn't keep anything down so off to the peditrician we went. There was talk of an ER visit for an IV but thankfully, Zofran worked and she began her recovery. She's a skinny mini (and a light eater) to begin with and I was saddened to see she had lost weight. She was down to 36 pounds. I see lots of ice cream in her future.

At 10:12, while comforting Emily as we waited to see the doctor, I checked my Blackberry for work email. I had been invited (last minute) to a meeting that was scheduled for 11:00. I didn't have time to respond until after we left the doctor's office and I couldn't just say, "Sure, I'll call in," because we didn't arrive home until after the meeting began and I kind of felt that getting a sick kid settled and taking care of pukey clothes that Grammy accidentally threw out was more important.

In the end, I didn't feel comfortable with the situation.

I hate having to choose between my kids or work because that's what it feels like to me. A choice. And I fear being judged for my choices. For some reason, I've been incredibly stressed out over this lately. It's hard for me to see it as balance when others may not.  It all seems so draining lately and it's at the point where I feel like I need a bit of a break from the daily grind and chaos.  Maybe feeling burnt out is making me extra sensitive.

I do have some vacation days to use by the end of the year but I'll most likely take them as random days for school events or Anna's appointments, instead of taking blocks of time off.  Which is all good.

Tuesday, October 21, 2014

{Disney} - Day 2 - Magic Kingdom, it's electric

After breakfast at 'Ohana, we returned to our rooms for outfit changes, bathroom breaks, etc. This was the only day where the girls had an outfit change.  For reasons no one can remember, we decided to take the monorail, instead of the boat, over to Magic Kingdom.  As we were heading out of the lobby to the monorail platform, another guest walking in the opposite direction told us that the monorail was down.  What?  WHAT?  Just then her husband came running up behind her.  "They just announced that it's back up and running." We took our chances and fortunately, did not have to wait very long.

We did have some FastPasses booked for the day but unfortunately, none were for Anna & Elsa. We tried but that one was never available and at some point, you realize you are wasting far too much time checking to see if any have become available and you give up and accept the fact that you will be waiting in the stand-by line. (Or convince your husband that you will be waiting in the stand-by line because 7 year old girls cannot go to Disney and not meet Anna and Elsa.)  We had two main goals for our first full day in Florida:  meet Anna & Elsa and to watch the Main Street Electrical Parade.

dis22a

We arrived at Magic Kingdom not too long after it opened and headed back behind the castle to check out the Anna & Elsa line. But then we spotted the Fairy Godmother and we had to stop because she's only out in the morning and it's not something you can just come back too. Plus the line was fairly short. While we waited in that line, I checked out the nearby Anna & Elsa line, which was marked at 60 minutes but the line was pretty long and snaked through temporary roping set up out front. Hmmmm.

dis22b

dis22c

My first thought after meeting the Fairy Godmother was to just get into the A&E line but it was already long and the girls wanted to do some rides. I have a line app on my phone and I had been checking it here and there in the weeks prior to our vacation. I noted that the wait time for the stand-by A&E line seemed to shrink slightly after all the rope droppers made their way through. We rode It's a Small World and Peter Pan, took a bathroom break and then stepped into the Anna & Elsa stand-by line, which was now shorter but still had a long wait time. 70 minutes. The girls never once complained.

dis22d

dis22e

The one thing that I have to commend Disney on is the attention to detail with respect to theming.

dis22f

dis22g

Total wait time was (oh, you better believe I timed it) 95 minutes. What I found interesting was that there were two Anna & Elsa meet and greets going on at the same time. I know this because after waiting in line for 95 minutes, you become friendly (hopefully) with the guests waiting in front of and behind you and when we were finally ushered into the room with Anna and Elsa, those guests were no longer in line with us.

dis22h

dis22i

dis22j

dis22k

Next up was Splash Mountain. I'm not a huge fan of this ride but I didn't complain too much as it was hot outside. We don't subject Grammy to torturous rides and lucky for us, this is one that I can ride with two kids. The girls really, REALLY wanted to go swimming so we decided to eat lunch and then head back to the resort for a few hours of downtime before returning for more fun and the Electrical Parade. 

We were walking past Pecos Bill and Rich suggested that we check it out. One of my planning downfalls was winging our quick service meals. I think that there were better options that we didn't explore. At this point, it had started to lightly rain and it was well past our normal lunchtime. We quickly (regrettably) made our food choices and left Rich in line while we attempted to find a table. Emily did not like the seating area. It's dark and CROWDED. Thankfully, a table opened up on the end, which gave us a little bit more space. The tables are TINY as well. Grammy and I ordered a taco salad to share, not realizing that they were going to give us a taco shell with a layer of meat and we would be expected to fill in the remainder of the salad at the fillings bar. Not exactly the taco salad of my dreams.

After lunch, we took the boat back to our resort

dis22l

dis22n

dis22m

dis22o

dis22p

dis22q

and then made our way over to the "quiet" pool after stopping by the rooms to change clothes. The main pool at the Polynesian was under construction and I had been fearful that the quiet pool, being the only pool available, would be packed. This turned out to not be the case. The resort was offering complimentary tickets to Blizzard Beach, one of their water parks, so I'm not sure if that helped keep the quiet pool so quiet.

dis22s

We were at the pool for all of five minutes when it began to pour. Thankfully, the pool area has some table areas that are completely covered so I was able to stay dry with all of our stuff. We could hear thunder in the distance and after 15 minutes of swimming, I pulled the girls out. They were bummed. As we were leaving the pool area, the lifeguards closed the pool due to nearby storms.

dis22r

Rich and I left Grammy and the girls in the rooms and returned to the main building to purchase rain ponchos. We also stopped by the front desk to ask how we would know if the Electrical Parade was canceled. The response to our question was, "They want to have the parade as much as you want to see it. Sometimes they won't make a decision until five minutes before." This was not the news we wanted to hear. We returned to the rooms with the rain ponchos and eventually headed over to Captain Cook's for dinner. It was freaking POURING rain. I didn't bring my camera because of all the rain but I can tell you that I shared a flatbread pizza with Emily for dinner. It was pretty good. My only complaint is that the bottom was a bit soggy in the middle.

dis22t

So now came the great debate. Do we return to Magic Kingdom in the rain not knowing if the parade will be canceled or do we just say forget it, we'll see it Wednesday night? I had scheduled Monday and Wednesday as Magic Kingdom days because the Electrical Parade was slated for both nights. (We don't do Park Hoppers.) I figured that if the kids were too tired Monday night, we could just catch it Wednesday night. I never thought about it being canceled due to the weather. We eventually decided to head back over to the park and keep our fingers crossed that the rain would stop.

We arrived around 7:00 and found a spot on the sidewalk in front of the candy shop. If you're not familiar with the park, this is fairly close to the entrance/exit. We were able to hang out under a covering so at least the kids weren't sitting out in the rain. A few other hopeful guests had secured spots around us. At 7:30, it was announced that the parade was canceled and a mass exodus began. As we were leaving, I thought to ask a cast member if the fireworks at 9:00 were also canceled. She said no. We returned to the resort and got the girls ready for bed. At 9:00, we heard the first boom marking the beginning of the fireworks. There was a beach area untouched by the construction next to our building and we were able to watch the fireworks and light show around the lagoon from there. Thankfully, the rain had finally taken a break and we were able to enjoy the show without getting soaked.

Up next - Animal Kingdom