And Baby makes Three!!
Big News in the Maddy family! Our family of four is expanding; yes, we will be welcoming Baby #3 into our family in August! Crazy, I know. Especially considering if this baby is two weeks early then we will have three kids under 2! Note I did not say three kids 2 AND under but three kids UNDER 2! Needless to say the girls and our newest arrival will be two years apart.
So our little bundle of joy came somewhat as a surprise. Let’s just say Justin and I knew we wanted a bigger family but it happened a little early in the “plan”. So our plan of living at my parents for a year more realistically turned into a year and a half, but that’s okay. We definitely want a place of our own but we could use the help especially in a few months when I am bigger and lifting the girls may not be as easy. Plus the truth is we are still undecided on where we want to live so this gives us more time to make that decision.
As the girls get older and near the “terrible twos” we have on occasion got to witness the a glimpse of what a terrible two temper tantrums may look like. Emerson is not a huge fan of getting dressed or changing her diaper and she kicks her legs during the entire process. She also associates a snack with anytime she has a cup and she is prone to fisting her hands and getting very angry. Avery doesn’t have a temper nearly as often as Emerson; however, when she does boy does she get angry. And occasionally she will bite or throw her body around if she gets that angry. During these times Justin and I think what in the heck have we gotten ourselves into? But most times our girls are really well behaved girls and manage to put huge smiles on our faces. Like today Justin got a haircut (his hair was getting long and unruly) and when Justin got home Emerson kept laughing at Justin, pointing to his hair and trying to touch it. The thought of her doing that just cracks me up. And while I was at work today our nanny Ana sent me a picture of Avery playing dress up. She had a pretend frumpy green dress, a scarf tied around her head, a baby doll being carried on her back all the while she was pushing a shopping cart with another baby doll in it. She looked homeless but I couldn’t help but to laugh and smile. So while we sometimes have our holy crap moment at the thought of another kid we really are super excited and overjoyed for the newest Maddy baby.
I am 15 weeks this weekend! The first trimester was rough. Starting about 6 ½ weeks I started to feel nauseous and while I started feeling ever so slightly better probably at about 10 weeks, it really wasn’t until about 14 weeks that I started feeling “normal”. That part was hard because it has been hard taking care of the girls and truly enjoying them when I feel like complete crud myself. Especially considering my first trimester with the girls was really easy. Seriously, there were 2 weeks where I thought maybe I felt nauseous. Looking back I know for certain I was but it was ever so slight that I questioned it! While I know that I was tired during my first pregnancy trimester, I still worked out regularly at my gym; whereas, this time around I spent very little time on the treadmill during the first trimester. Being awake and caring for the girls was enough of a workout for me most days. The good news is that I am finally feeling better. In fact, this week, I have walked on the treadmill 5 times this week, done a few squats, and more importantly have actually enjoyed it! Justin had been doing more than his fair share of responsibilities while I wasn’t feeling well so I am looking forward to getting back to our normal shared routine and responsibilities. Believe me, I’m sure he does as well!
Almost 18 months already!
The girls turn 18 months on Monday! I can’t believe it. They are turning into little young ladies. The past few weeks Emerson’ vocabulary has really increased. She tries to repeat words now, doesn’t always quite get it but she is trying. Her cutest is “all done”….I have got to get a video of her saying it because it seriously is the cutest thing ever. She also has learned a lot more body parts recently including knees and shoulders. She loves the Learning Puppy and when he sings the song “Head, Shoulders, Knees, and Toes”, she imitates accordingly. Avery isn’t quite as far along as Emerson in her vocabulary. She understands so I am not that concerned about it, yet at the same time I wish she would get the show on the road a little bit. She consistently says “up” when she wants to go up but other than that she doesn’t really say a whole lot of other words with meaning.
One awesome thing to report is that this past weekend, the girls had the most independent play they have had to date. We seriously sat on the couch and watched them…I swear it must have been at least 20 minutes were they were able to entertain themselves. It’s fun to see the things they come up with. For example, they like to push their big comfy chairs to the middle of the room, turn them upside down and make a fort where they can hide out and read their books. They also like to take all the containers out of the cupboard but now they like to put a container on each chair and then fill each container with their cheerios or whatever other snack they have that afternoon.
I’m just so amazed at these little people they are becoming. I know I am biased but they really are just wonderful!!
Avery – Wills Update
We’ll I’m overdue in writing some blogs and I do have a good amount to report. First Avery had a doctor’s visit at Wills Eye Institute in Philly on January 22. Her appointment was at 11:00 so we left at 7:00 a.m., which was way better than having to leave at the 4:00 a.m. hour to make her 6:00 a.m. appointment in Baltimore a few months earlier. Anyway, Avery is just awesome. Justin took her out of her crib earlier than normal so she wasn’t quite ready to get up…which was fine actually because we wanted her to fall back asleep in the car which she did within just a few short minutes and she slept most the ride to Philly. At the doctor’s office, she found her way to the play room and made herself right at home. There were other kids in the playroom and Avery was not shy about going up to them. She really is such a free spirit! With regards to the actual examination, Avery did awesome! It makes me happy and sad at the time, although mostly happy. No kid Avery’s age should be so used to being examined by a doctor, but the truth is she is used to it and tolerates it so well.
Overall, the outcome was good. Dr. Levin confirmed that the ERG report was essentially normal and the minor abnormalities were a technical glitch of the report. So Avery has no retinal or cone rod dystrophy! Dr. Levin was very pleased with the progress that he saw from exactly one year prior. Similar to Dr. Repka, he felt that Avery’s nystagmus was a result of the cataracts and smaller eyes and optic nerves but didn’t feel it was anything further than that. He basically said unless her development falls behind schedule he doesn’t want to see us anymore!
After the appointment, we went to the same French café that we had gone a year prior. Last year when we went we felt the food wasn’t that good and it was overpriced. Yet we found ourselves back at the same place. The temperature wasn’t even out of the teens and it was windy so we didn’t want to venture very far with Avery. We decided to give it another try but decided we would order something different than last year. I am happy to report that the meal was much better than last year, although still not great and definitely still overpriced. If we do have to back to Wills again, I want to visit this place again afterwards since now it is just part of the routine.
After our tummies were full we loaded up the car and headed back home. Avery was exhausted and fell asleep for a little more than two hours. When we were about 45 minutes from home she started stirring and woke up. Justin and I were talking about how I was going to climb into the backseat to sit with her when all of a sudden we heard what sounded like Avery had choked. I said Avery “are you okay?” Not that I expected a response but I didn’t get one. As I was crawling back I could start to smell the vomit. Poor little thing had thrown up in her car seat! It smelled like sour milk…it was so gross. It didn’t even phase her. Avery’s normal meal schedule had been off that day due to travel so she had more milk than normal. On top of that I gave her yogurt for breakfast since it was easy to transport. Poor little thing had too much dairy! Justin from the front seat thought he was going to vomit from the smell. Luckily we were only about a half hour from home by this time. Once she was home she was happy to be able to run around in familiar territory and happy to see Emerson. Emerson was happy to see Avery too. Emerson definitely knows when Avery isn’t around and misses her in the way that 18 months old miss their siblings:)
Winter Colds :(
I haven’t written a blog the past few weeks because we haven’t really done much of anything. The girls came down with a cold on December 28 just two days after our play date with the Farmer extended family. We tried to get a picture of all of us at first.
We decided we might have better luck if we tried with just the kids….
As you can see they weren’t very enthused about sitting still for a picture together so we decided to get one picture of just us 4 high school friends.
Not too bad….anyway, back to the cold…I predicted it would happen even before their play date occurred. Many of my friends would tell me horrible stories about how much time they spent with their babies the first year at the doctors office…their babies would have ear infections, hand foot mouth, colds, thrush, you name it. So when the girls turned eight months old on April 4, 2012 I was pretty excited that neither of them had ever needed to go to the doctor for a sick visit. BUT then on April 8, 2012 we had our first play date with the Farmer clan. I didn’t notice any kid being sick but the girls came down with their first cold that lasted two weeks just a day or two after our play date.
I just had this feeling that they would end up sick again this time after our play date scheduled for the day after Christmas. I was certain of it when we got there and both Owen and Sophie had runny noses. Oh well, my girls need to be exposed to germs sometimes.
Avery had a little cough some days but for the most part their runny noses were the main culprits. They are pretty good sports when it comes to being sick and don’t let it get them down too much. Emerson has been a little more tired than normal sometimes and has wanted her lovee and her pacifier during the day but really am I am impressed with how well they handle having a cold. We even switched the morning bottle to a morning cup while they had their cold and the transition didn’t phase them!
Emerson and her runny nose….
Avery wasn’t feeling good enough to take her normal nap but once she got out of her crib and got to hang out in the basement with Mommy and Daddy she was all smiles.
This picture cracks me up…This is Emerson imitating how a baby cries…check out those lips!!
Christmas Eve
Going to church on Christmas Eve is a tradition of Justin’s family. Since we don’t belong to a church, we felt attending a child friendly service at Vienna Presbyterian would be our best bet. We went into it thinking that likely we wouldn’t make it through the whole service, but WE DID! Emerson was AWESOME…she sat through the entire church service. Avery on the other hand would not sit still. All she wanted to do was run around so Justin and I took turns leaving the service and letting her run around in the main area. So I ended up missing a good chunk of the service but the speakers were in the main hall so I still heard everything, which for the most part was a children’s play and songs. But we made it though the whole service…did you hear me? We made it through the whole church service with two 16 month olds…GO US!
We dressed the girls up in their dresses that my sister had given them from Zara when they were babies. The girls rarely wear dresses so it was fun to see them dressed up and of course it turned into another photo opportunity!
YEEAAAAHHHH……”Look at me…I’m a rockstar!”
Avery playing in her kitchen!
Picture time with Grandpa!
Picture time with Grandma now!!
Before we went to bed, the girls wrote letters to Santa….
and then left Santa some milk and biscotti (mommy forgot to buy cookies…hopes santa likes biscotti)…
Good night and Merry Christmas!
Christmas in Virginia Beach
This year we decided we wanted to initiate our own Christmas traditions and spend Christmas at home…although until we are living in our own house we still won’t really feel like it’s “our Christmas”; however, that will come soon enough next year. This year we went to Virginia Beach Friday evening in order to have an early Christmas celebration with Justin’s family. We spent over 6 hours in the car….a trip that normally takes 3 1/2 hours….(on the bright side it took a record time of 3 hours 10 minutes door to door on the way home Sunday).
We arrived in Virginia Beach late Friday night after the girl’s bedtime; however, we still wanted to stop by and see Justin’s parents. They were a little cranky but it was late so we didn’t stay very long….just long enough to say hello and the girls to have their night time bottles before checking into the hotel.
Saturday morning we arrived back over at Justin’s parents shortly after 10:00 am. It didn’t take long for the girls to warm up. They made themselves quite comfortable and had fun being the entertainment for the day. They definitely had the hang of opening up presents….they definitely did not at their first birthday. I think having eight nights of Hanukkah just a few weeks early helped them to understand the concept of opening gifts. We have discovered recently that Emerson might have a little OCD when it comes to cleaning and things being kept in order and her need to put every piece of wrapping paper in the trash (prior to her finishing opening the gift) confirmed that she is indeed a little extreme with her tidiness considering she is only 16 months.
The girls had a great time dancing to the Christmas musical decorative pieces and Emerson was very quick to turn the sound on as soon as it shut off. Avery was her partner in crime. She waited for Emerson to turn it on and then she would dance, dance, dance!
Justin’s parents really enjoyed visiting with the girls.
Emerson also had a good time trying to control grandma’s wheelchair!
And then it was present time!!!
The girls really had a great time on Saturday. Justin and I even ran to the store Saturday evening and left the girls with Justin’s sister Jennifer and Kaya and they were quite excited to be hanging out with Aunt Jenny and cousin Kaya! They didn’t want to leave to go back to the hotel! After a great night of sleep for all of us, we went back over to Justin’s parent’s house Sunday morning.
Hello Grandma! Good morning. Are you glad to see me Emerson again?
Hey…hey…don’t forgot about me little Avery! I’m pretty glad to see you again this morning too!
Avery was a little clingy Sunday morning and it really took her awhile to warm up….but we kept trying to get her to warm up to everyone…
Eventually the pictures just included Emerson!
While Emerson was having her picture taken with Aunt Jenni and Cousin Kaya, Avery decided to go look at the pretty Christmas Tree.
Emerson decided she wanted to be doing what Avery was doing!
A good time was had by ALL especially these two beauties!
Holiday Card
Now that we finally sent out our Holiday Card, I can post some pictures from it. We made several attempts at a holiday card photo shoot and the last time, we had enough success to do a multi picture card, which in my opinion was pretty successful. At first we tried to get a family shot of the four of us in the backyard. Those didn’t work out quite so well.
We decided we would have better luck if we only featured the girls on the holiday card. Odds of having two people look good vice four were much better. So we took the girls to Glyndon Park and had them run around in the leaves and play on the swings. The leaves were a little scary to Avery but once she was in the swings she was having a blast. Emerson had us cracking up because she was picking up logs and trying to move them.
Welcome To Holland
WELCOME TO HOLLAND
BY
EMILY PERL KINGSLEY.
c1987 by Emily Perl Kingsley. All rights reserved. Borrowed from:
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……
When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”
“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”
And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.
But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.
I found this poem probably close to a year ago on one of the social network sites on nystagmus. It was this time last year that Avery was diagnosed with nystagmus. We went up to Hopkins knowing that nystagmus was a possibility since she really hadn’t started focusing since her cataract surgery at 5 weeks and her eyes seemed to be in constant motion for the last few weeks. I remember the visit vividly. We drove home that night with so much uncertainty. We were told Avery wasn’t blind but at the time I think we felt that she wasn’t far from it. How could this be? This wasn’t what we signed up for. We signed up to have two perfectly healthy children. This wasn’t supposed to happen to me. These were just a few of the thoughts that were running rampant in my head. We went home that night to our condo where my parents were awaiting our arrival. We told them of Avery’s diagnosis and the tears began. The truth was nystagmus is not actually a diagnosis; it is a symptom, which meant we still didn’t really know her diagnosis. We were going to have to schedule a MRI and possibly see a geneticist specializing in small eyes. I ended up taking the next day off of work; I just wasn’t ready to go back especially considering it was a Friday. And that is when my research began.
The internet is equipped with so much information. You can’t believe everything you read, but if you understand that the internet can be a wonderful place for resources. RESOURCES = KNOWLEDGE = POWER. I have found that there are SO many eye disorders out there and SO many of them have so many of the same symptoms and so many of them are diagnosed by an ophthalmologist looking at the patient’s eyes (talk about scientific)!
Over the past year we have had more doctors appointment than any little baby should have EVER and we have seen many doctors and specialists, and to this day we still don’t have an official diagnosis. Avery had her first ERG done January 31, 2012 at Will’s Eye Institute in Philadelphia. She had it performed while awake and the results came back as showing mild cone abnormalities. Overall, the doctor’s felt it was inconclusive and that we should have the test repeated after Avery turned one. So on November 6, 2012 Avery had her second ERG performed at Wilmer Eye Institute at Johns Hopkins. This time she had it done under anesthesia so that her doctor at Hopkins, Dr. Repka, could perform a full eye exam at the same time. He told us the preliminary findings of the second ERG was that it was NORMAL!! It showed Avery had NO cone or rod abnormalities, so that ruled out ACHROMOTOPSIA (which I was certain she had for awhile) and all other cone/rod dystrophy’s. Since Avery is developing normal and her MRI came back as normal, Dr. Repka feels that it is limited to her vision. He basically felt that her cataracts were the cause of everything else (nystagmus, dilated eyes, small eyes, photobia, etc). This was good news….
Until we received the formal write up of the procedure from Dr. Repka While we have known since Avery was only a few months old that she had small optic nerves and her eyes are a little smaller than normal, this was the first time I had ever had a doctor use the work hypoplasia….optic nerve hypoplasia. In it’s most basic terms optic nerve hyspoplasia (ONH) means small or under developed optic nerves. However, ONH is often associated with several developmental brain abnormalities; midline brain structures including the pituitary gland. And if the pituitary gland is abnormal, growth hormone deficiency may result in delayed growth and development of a child. So obviously I wanted to know does Avery have ONH because nothing indicates that she does. A few weeks later I asked Repka and he did not want to give her that diagnosis; however, as her mom I want better answers. At the same time I asked Repka about the official ERG report. Well guess what it HAD come back with minor abnormalities in the cones of both eyes and the rods of the left eye. What in the heck does this mean? Repka wasn’t certain if there were any implications because of this or not. So once again I found myself confused and wanting more answers. Is Avery’s case really that rare? I have done TONS of research and think that the answer might be yes but I honestly don’t know. What I do know is that I think it is time to get some more expert opinions. I want to take Avery back up to see Dr. Levin in Philadelphia. I plan on contacting him via email in the next week first but I have to work on my email so that it captures his attention. And while we still don’t have an official diagnosis, and may not for awhile Avery clearly has nystagmus and in my opinion strabismus (her eyes have been misaligned over the course of the few months). Nystagmus can not be cured but there are options to improve it and strabismus can be corrected. The visual systems most critical period is between 0 – 6 months of life and then after that a child’s visual system continues to develop until about age 8. I’m on a mission to connect Avery with the right doctors…they are out there, I just need to find them. While I don’t want her life to be about doctors and finding an official diagnosis, I think it’s important we do a little more at this point in time to get some answers. I hope to have a plan of action in place in the next few weeks.
Winter Walk of Lights
This year at Meadowlark Gardens (where Justin and I were married :)) they had a Winter Walk of Lights. I drive by it on my way home from work every night and when we passed by it again this weekend, Justin and I knew we had to go. Tonight was the coldest night of the season thus far at 37 degrees. We bundled the girls up and they seemed to have a pretty good time despite their super red cheeks. I was really hoping to get a good picture of the girls for our holiday card but they just don’t like to sit still and look at the camera. Here we are enjoying the holiday music and watching the light show.
Reaching up to catch the lights!!
