American Nystagmus Network Conference

The weekend of July 12 Justin flew to Orlando, Florida to attend the American Nystagmus Network (ANN) Conference.  The conference is held in various locations every other year and a few months ago we decided Justin would attend solo this year on behalf of our family as I would be 8 months pregnant at the time.  Justin was only 1 of 3 attendees who attended solo and while he said there were some awkward moments, he definitely thought the conference was well worth it and came home feeling encouraged.  The conference started Friday evening with a breakout session.  Justin attended the one for parents of kids with nystagmus followed by a dinner event which was really just networking for a few hours.  Saturday morning started with Dr. Hertle as the Key Note speaker via Skype followed by three breakout sessions throughout the day and again a networking hour in the late afternoon.  The breakout sessions were all excellent topics and we wish Justin had been able to attend all of them.  However, choices had to be made so we decided it would be best for Justin to attend the Everyday Living With Nystagmus, Building Confidence in Children, and Teen Panel sessions.  Justin took good notes even though I wasn’t able to attend, I felt that our whole family did and really will benefit from Justin’s attendance at the conference.  Justin got a chance to meet others with nystagmus and parents of children with nystagmus.  He even came across two sets of twins where one twin had nystagmus and the other did not.  He got to hear first hand the personal experiences of children with nystagmus and their parents.  Justin was really encouraged to hear and see that most the children really did thrive.  Yes, nystagmus is a challenge but it is not a limitation, just a challenge and ALL kids have challenges in some shape or form.  

Some of the children had had surgeries to correct their null point and dampen their nystagmus while others had not.  Some kids and parents felt that there was some improvement but overall nothing significant.  A lot of the kids who had surgeries to correct their null points had to have multiple surgeries.  And some kids eye movement was more noticeable than others.  Justin did hear that a lot of the kids nystagmus did dampen with time regardless of having surgery or not having surgery.  He also heard that a lot of the kids who had light sensitivity said that it got better over time.  Although many of the children’s experiences are similar (especially more so in the social area), I would say that each child’s experience is different (again medically, socially, emotionally).  Medically, Justin and I think the next logical step in the process is to take Avery to see Dr. Hertle, likely sometime in late Fall/early Winter.  We’re not sure at this time if we would have him do the surgery or not; however, we do think it is important to get his viewpoint on Avery’s particular case.  With regards to the social and emotional aspect, we’ll be constantly addressing them with Avery and others throughout her life and while it won’t be easy at times, I know we can handle it and I know Avery is going to be perfectly fine. Statistic say that 1 in 3000 persons have nystagmus, which is somewhat hard to believe considering I have never met anyone else with nystagmus and I had never heard of it before, and I would say that probably is the case for most.  Anyway, I do think that our family will attend future conferences as nystagmus not only affects Avery but our whole family and we are in this together as a family.

Justin took a bunch of good notes at the conference and I was going to include some of them, but after reviewing them I decided that it was more important to note here that we should go back and read not only Justin’s notes but the few material hand outs a few times a year so that we continually make sure we are putting them to practical use.  Note to self: the notes are in Avery’s medical binder notebook. 

First Dentist Visit!

Today the girls had their first dentist appt.  Here we are on our way to the dentist!

Here we are playing in the wait area at the dentist!

Here we are in the dentist chair! 

It wasn’t so bad….I think the girls will be excited for their next appointment in 6 months!

Baltimore Vacation

Our nanny Ana was off for two weeks starting June 24.  My mom watched the girls an extra day each week and Justin and I took off three days the first week and took the girls to Baltimore for a mini vacation.  Since we were already taking off, we wanted to go somewhere but being as far along as I was in the pregnancy, we didn’t want to go too far.  My dad’s friend owns a condo in Baltimore that he generously let us stay at twice a few years ago and he generously let us stay there again for three nights this time with the girls.  Even though we weren’t going away for very long and we weren’t very far, our car was still packed!  We certainly don’t travel lightly these days.

We arrived at the condo around lunch time Wednesday.  We didn’t have a real goal for Wednesday other than settling in which included unpacking and going to the grocery store.  When we first got there we quickly realized that while the place was overall “child friendly” in that there weren’t a lot of breakable items, we couldn’t take an eye of the girls for even a second.  It was the little things….the metal coming off the kitchen chairs on wheels, the cleaning supplies in the unlocked kitchen cabinets, or the front door without a deadbolt allowing the girls to let themselves out of the apartment. We chuckled at the same time we cried internally!  The picture below is a nighttime view from the condo. 

Wednesday evening we took the girls to a Mexican restaurant in Federal Hill.  The menu looked amazing and while the food wasn’t bad, it didn’t meet my expectations.  I think I was expecting some awesome Mexican food like what I would find in NY City based on the menu.  It was reasonably priced and it wasn’t bad, just not great.  The girls had a good time.  Avery LOVED the black beans and she ate them with her hands which created a huge mess, but all we could do was laugh.  Justin took a few pictures unfortunately they didn’t really capture just how messy she was.

Emerson on the other hand LOVED the chips.  She is such a dipper too.  They had three types of salsa and she had to dip just like Mommy and Daddy.  Hey, whatever keeps them entertained at a restaurant! 

Thursday morning we headed to the aquarium.  It cost $35 per person to get in; thank goodness the girls were under 2 and got in free.  We didn’t take the stroller because they weren’t allowed.  Emerson was fairly lazy much of the time we were there and wanted Justin to hold her quite a bit (or sit on the ground).

Avery was a bit more adventurous and enjoyed climbing up to see the exhibits. 

At one point, Justin cut his finger and went to the bathroom to go clean it.  There was a little overlook of the harbor that was like a break room on each floor so me and the girls waited in there for Justin.  At one point Emerson started running away so I went to catch her and when I looked back at Avery she had gone from sitting by the window to standing up and hanging from the railing!  She is such my little daredevil…no fear whatsoever! 

During the rainforest exhibit there were some sort of cockroaches that two volunteers were holding and allowing people to touch.  Emerson wanted no part of it, but Avery went to reach for it.  I was holding Avery at the time and it scared the bejeezes out of me!  I screamed loud enough to scare her from continuing to touch it and for that I felt badly.

The girls were starting to get tired after a few hours so we stopped in the cafeteria and they sat down to have their snacks of raisons and agua.  We snapped a few pictures to capture the moment.

After snack time, we made our way to two interactive children’s exhibits and the girls had fun playing.

Next we made our way to the Dolphin show.  The show was relatively short and we arrived just before it started with the hope the girls would sit still long enough to see it.  Fortunately with the aid of pretzel sticks, the girls sat “still” enough for us to catch the show. 

When the Dolphin show was over, while we hadn’t seen every single exhibit (I think we missed the sting rays and the Australian Exhibit) we had been there 2 ½ hours and the girls couldn’t take a whole lot more.  Philips Seafood was right next door so we took the girls there for lunch.  After lunch, we walked back to the car where we headed back to the condo and put the girls down for a late afternoon nap. 

They had fallen asleep pretty immediately after getting in the car and they awoke by the time we got them up the elevator to the 23rd floor, so the afternoon nap went horribly!  Since we went out for a late lunch, we decided not to go out for dinner and eat some of the food we bought the day before at Harris Teeter for dinner. The girls had a normal dinner; Justin and mine’s dinner left much to be desired.  Since we stayed in that night we had plenty of time to give the girls a bath in the big tub.  It was so big that they really couldn’t go in it themselves, so Justin (with bathing suit onJ) went in with the girls.  I tried to capture a few pictures but my photography skills are pretty pitiful sometimes and I didn’t capture a single decent picture.

Friday morning we took the girls to The Children’s Museum.  We had originally planned on going to Annapolis for the day but we realized that the girls would have much more fun doing something that was interactive.  It was awesome.  There were several exhibits / rooms that were appropriate for their age.  We basically spent our time in three rooms.  The first was the Tot Trails Room where the girls explored mazes, funneled sand, played with lightboxes, and participated in story time “Mother Goose on The Loose”.  Emerson true to form sat on Justin’s lap most of storytime/songtime taking it all in while Avery sat on my lap for only a few minutes before getting up and exploring yet still listening to what was going on. 

After about an hour in that room, we made our way to Tiny Diner, which was this awesome little diner for kids. The girls had a great time in that room! 

Next we went to the Oasis room which was more of a “quiet” room meaning there were TONS of books, stuffed animals for lounging against, and a good amount of learning toys as well. 

The girls had fun exploring this room as well while mommy and daddy took turns testing out the comfort of the lounging stuffed animals. By the time we left this room, the girls were starting to get tired.  As much as we wanted to stay, we figured it was best to head out as the prior two days their naps went horribly wrong because they were overtired.  Our tickets were valid for the day so I had been hoping that if it worked out, we could swing bye again for the last hour before it closed before dinner time if we could find a street parking spot. Turns out the girls nap went well this day, which we were grateful for because Justin and I actually napped this day as well; however, the timing didn’t allow for us to make it back before closing time. 

This was our last night here and we decided to go to Little Italy for dinner.  We went to this place called Amici’s recommended by my dad and his friend.  My expectations weren’t that high from looking at the menu but we decided to try it anyway because there weren’t that many restaurants that appeared to be kid friendly and it was about $6 cheaper per entrée than most the other restaurants in Little Italy.  There are not many restaurants that Justin and I go to where we say we would go back, but this was one of them!  It by far exceeded expectations.  Justin and I split a house salad topped with fried calamari.  He had the chicken parm and I had the chicken parm/eggplant parm combo.  We both thought it was delicious!  For the girls, I ordered plain pasta and a side of peas as I figured they would be eating bread, their raisons and they would be trying our food as they wanted.  They devoured the pasta and peas and their raisins.  Avery even ate some bites of my chicken while Emerson had her first taste of spaghetti with sauce…she LOVED it as did her clothes!  Emerson was so stuffed that she didn’t have the energy to walk to the car afterwards and wanted Daddy to hold her.  Avery thankfully walked most the way back because Mommy didn’t have the energy to carry her the whole way.

While in the condo over the course of the three days the girls had fun playing with one another.  It is really neat to see them truly start to play (and fightL) with one another. 

We enjoyed our mini vacation but I can’t exactly say that it was relaxing.  It is only going to get crazier with three kids but I’m hoping my lack of energy is truly related to being 8 months pregnant and that the older the girls get, the easier and more relaxing vacations will be.

Pool Time!

We took the girls in the big pool for the first time a few weeks ago. They were a little hesitant at first but by the time we came out of the pool, Emerson loved it.  It took Avery about two times in the pool before she felt the same way.  I bought them little vests to wear and goggles.  They are good about wearing their vests and the vests certainly help keep them afloat; however, they still have to be held or on a float with an adult the entire time in the pool.  Avery is better about wearing her goggles than Emerson although she tends to wear the goggles more outside of the pool than inside. 

We also got them a new little pool this year.  We tried the mushroom pool that they used a whopping one time last year and once they got in it, we could see that they clearly had outgrown it.  Their new kiddie pool is bigger and doesn’t have a cover so it is less restrictive.  The girls like filling their cups with water and pouring the water on the chairs,  adults, or any other object outside the pool.