Baby Bo and ONH

I haven't done any monthly updates for Bo. That's partly because I haven't made the time and partly because I haven't really known what to say. The story goes like this....


When Bo had his 2 month appointment, I was worried about his eyes. They crossed a lot and he didn't seem  to be focusing on anything. He also wasn't smiling or making eye contact at all. The doctor told me not to worry. He said it would probably work itself out before 4 months. I was still very concerned. The doctor didn't see his eyes that day, because he was asleep the whole time. Two weeks later, Bo got pink eye (totally random for a baby!) so we headed back to the pediatrician. This time, we saw a different doctor. I told him again that I was concerned that Bo wasn't tracking and his eyes were crossing a lot. This time, the doctor looked at his eyes. He said that we needed to see an ophthalmologist. We went to the ophthalmologist on Halloween. I was one hundred percent sure that he would say Bo needed glasses and an eye patch- maybe surgery for weak eye muscles. I didn't think there was anything else that could have been wrong. As it turns out,  the doctor told us that Bo has optic nerve hypoplasia, which essentially means that his optic nerves are underdeveloped. We were told that he could eventually have normal vision or he could be blind. This is not something can be fixed with glasses, because it has to do with the brain processing images and not the actual eye. The doctor also said that we should consider an MRI, because children with ONH can also have other brain abnormalities. He refused to tell us anything more. When I asked for statistics, he said they didn't matter. I was furious and terrified, and I immediately started to look up ONH and find out more.

You can read more about ONH here if you want:
http://www.chla.org/site/c.ipINKTOAJsG/b.6051825/k.B964/Optic_Nerve_Hypoplasia_FAQs__What_is_ONH__The_Vision_Center.htm#.UullFfldWSo

Basically, kids with ONH can often have something called Septo Optic Dysplasia, which involves other brain abnormalities and endocrine problems. Everything we read led us to believe that Bo could either be completely fine or not fine at all. We really had no idea. So, we scheduled the MRI, which was a nightmare. First of all, it was scheduled on the first day I was supposed to go back to work after maternity leave. Then, the nurse was a flippant jerk. Bo had to be put to sleep and nobody could get a vein. They actually told us we could just come back and try again another day-um, no! They finally got the MRI done. Thank God, the MRI results came back normal. The only concern is a "possible slight thinning of the corpus callosum." Again, that might mean nothing or it might be a problem. We have no idea.

Right now, we are in the process of working with Babynet to get Bo started with OT, PT, and a vision therapist.  When they did an evaluation he showed developmental delays in all areas. We are trying to figure out if all of his delays are due to his visual impairment or due to other neurological problems. Things are looking a lot better in the past week or so. Bo has started to make eye contact more, he has just recently started turning his head to a voice, and is appearing to recognize and respond to us when we walk into a room. He is smiling some, but still not laughing. His gross motor skills are improving and he is starting to hold his toys and bring them to his mouth. These are all things he "should" have been doing weeks to months ago. He is making progress but is still behind.

We went back to the ophthalmologist on January 7th. He literally shined a flashlight in Bo's eyes and said "He seems more visually attentive. Come back in 3 months." That was it. He then proceeded to avoid all of our questions and concerns and tell us that we need to see a neurologist. He said that we will have no way of knowing how well Bo can see until he is able to tell us. He estimates that will be around 4 years old. Then, he wrote a letter to our pediatrician and copied us. The letter stated that he estimates Bo's current vision to be 20/200 which is legally blind. I have no idea why he wouldn't tell us that but then wrote it in a letter. Clearly, we will be finding a new ophthalmologist.

We  can tell that Bo can see some and we will be able to know more the older he gets.

We are planning to see a neuro ophthalmologist soon to try to get more answers. There doesn't seem to be a pediatric one in South Carolina, so that is a bit of a pain in the ass  an obstacle.

We finally had blood work done last week to check all of Bo's hormones, electrolytes etc. Again, it all came back normal. That and the MRI being normal are both very encouraging, but we still just don't know much.

I'll try to get back to doing regular monthly updates. In the meantime, here are his monthly pictures.

2 months. Bless his heart, I just could not get a good picture this day!

3 Months

4 Months 

5 Months 

As you can see, Bo is a growing boy. He is gaining weight and growing just like he should and he even had two teeth pop through out of nowhere last week. I'll post updates as we have them. 

Disney-Part 3

The last day at Disney, we went back to the Magic Kingdom. We got there around 7:45 in time for the opening ceremony, which was pretty much the happiest thing on earth.

Because we were so early and because it was January 2nd, which is when Disney attendance starts to really drop for the Winter, there were NO LINES that morning. By 9:00, we had ridden It's A Small World twice, and Pirates of the Caribbean, and the Winnie the Pooh Ride. And then we hit up the carousel again. 

After that, we happened to walk past Cinderella's castle just in time for a show.  I think I would like my next career to be a Disney show dancer. I think that this is a realistic option as they were not that great of dancers and some of them appeared to be pretty old. I'm looking into it. After the show, we went to meet Ariel in her "grotto." The whole grotto thing cracks me up, cause it just  makes me think of the Playboy Mansion. Sorry, that was not a Disney-like thing to say. 

After Ariel, we stumbled onto a parade. We randomly ended up with a front row seat to see every Disney character in creation. It was good stuff. 

Next, we hit up Crystal Palace for lunch. The only reservation we could get was at 2:00, so we were pretty starving and tired at that point. Can I just say that we ate like 100 character buffet meals and  they were all pretty crappy. I read all these blogs before going that said how great the buffets are....disagree. I will say that they were very accommodating to Miller's allergies and had the chefs come out and tell us what she could/could not eat at each buffet. But the food was not so great at any of them. Just FYI. At Crystal Palace, we met all of the Winnie the Pooh characters. 

We managed to muster up the energy for one more ride (Aladdin's Magic Carpet) and one more Dole Whip (and a Mickey Head Rice Krispie treat for Miller) before we headed back for the day. The next morning, we got to make one final stop before heading home. We had reservations at Chef Mickey at 7:20! That was the only time that was available because we planned this trip so last minute. It was totally worth getting up at the crack of dawn. 

As you can see, M was a little excited. When the chef came out to give is the allergy talk, he said that he could make Miller some egg-fee Mickey waffles. I was so happy that I almost cried. 

Look at all that food. She basically ate it all-not surprising. The

And there it is, folks. The picture with Mickey that we got up at 5:30 for. I hope you like it. For Miller, Mickey was not the highlight of the day. She was dying to meet Pluto. We told M that she could pick out one stuffed animal and for some bizarre reason, she chose a baby Pluto. The thought of showing her "Baby Plu Plu" to the "Real Pluto" was almost more than she could handle. Her first glimpse of Pluto...

And Baby Plu Plu meeting Real Pluto. What a great way to end our trip!

I want to go back tomorrow!

Disney-Part 2

On day two, we went to Animal Kingdom and Hollywood Studios. It was FREEZING! We did the safari, saw the Lion King Show, and met Chip and Dale. For some reason, Miller was obsessed with them even though she had never even heard of Chip and Dale before this trip. Little known fact- Chip's nose looks like a chocolate chip. That's how you can tell them apart. We learned that in the line. You're welcome.

At Hollywood Studios, we ate at Hollywood and Vine where we met a bunch of Disney Junior characters and rocked matching sweatshirts. 

After lunch, we went to the Disney Junior Live Show which was just okay. Then we stood in line for about a hundred hours to meet Buzz and Woody. We missed the Toy Story ride due to a FastPass mix-up, but I guess Miller will never know that it even existed so that's ok. We stayed at Hollywood Studios until dark so that we could see the Osbourne Family Lights, which was the coolest thing ever. It fake snowed. It was awesome. I am actually not being sarcastic, even though it probably sounds like I am. I loved it, because I am 5 years old when it comes to stuff like this. 

After the lights, we headed back to the hotel and ordered pizza. We were freezing and tired so that was the only solution. 

Disney World-Part 1

On New Year's Eve, we headed to Columbia to drop off Baby Bo with Memema. We spent the night there and headed to Disney the next morning. Miller did a great job in the car despite taking NO nap the whole time. When we arrived at our first hotel, Port Orleans Riverside, Miller was immediately given a balloon from a random kid. We knew we were off to a good start!

We checked in and headed to the Polynesian for dinner at Kona Cafe, where Miller enjoyed some Mickey Head ravioli.

Actually, she didn't  really eat it. She ate a bowl of strawberry yogurt. Oh, well. After dinner, we got our first Dole Whip (yum!) and went for a ride on the monorail. Miller LOVED it and has said that was one of her favorite parts of the trip. On the way back to the hotel, Baby Girl fell asleep in the car. This was the ONLY time she fell asleep the whole trip. No naps the entire time!

She woke up briefly to get in some princess jammies and take pictures with her Tiana bed,             complete with LED fireworks!                                                                                                                                           

The nest morning,we headed to the Magic Kingdom. Miller was so excited to see Cinderella's REAL castle. She actually got her first glimpse of it the night before out the window of the Polynesian, but I didn't know that was about to happen so I missed the photo op.                                                                                  

The first thing we did was ride the train to Fantasyland. 

This is my favorite picture of all time. See that charm on her Magic Band? Some random lady on the bus to the Magic Kingdom had three of those on hers. When she saw Miller looking at them, she insisted on giving her one. She tried to give her all three, but I talked her down. Basically, everywhere we went people just kept giving this kid stuff. It was crazy!                                                                                                     

Look at that happy girl! We got off the train and went straight to Dumbo. She loved it. Then we headed into the little circus tent, where we met Donald Duck, Minnie Mouse, and Goofy with hardly any lines. 

Then, we headed to Enchanted Tales With Bell. Fred was chosen immediately to be a night in the little play-bahahaha! He loves to get up in front of people, so it was perfect. (Sarcasm font.) Poor Miller wanted a part, but when she went up to get one, Belle just never did see her little tiny self so she just hung out with Knight Daddy instead. 

Note how Fred looks so comfortable here. Ha!  After Belle, we rode the Barnstormer. I thought Miller would be fine since it's a kid roller coaster. It scared the bejeezus out of her. Mom fail. Luckily, she recovered quickly. Next, we went to meet some princesses at Rapunzel's Fairy Tale Hall. 

Does anybody else find this particular Rapunzel a little creepy? Yikes. Next, we went to ride the carousel. 

So, check out Cinderella's castle. Is it looking a little ominous here? That's because it was about to pour down rain like crazy! It rained on and off a little and we broke out the ponchos and soldiered on.  

We rode the teacups and Fred and Miller did the Tomorrowland Speedway in the rain. 

Then, the bottom dropped out. We made a mad dash for the Little Mermaid ride and got absolutely soaked. Then, we headed back to the hotel  to get ready for our princess dinner at 1900 Park Fare at the Grand Floridian.                                                                                                             

Snow White turned out to be a sleepy hot mess at dinner, but she had a great time meeting          Cinderella, Prince Charming (she was smitten!), and the Stepmother and Stepsisters. That was all for day one. We took a very worn out girl back to our hotel for the rest of the stay, Saratoga Springs, and went to bed!                                                                                                                         

   

                                                                                

Christmas at Memama's

Yep. That pretty much sums it up.

Bo Bo's First Christmas

Well, let me start off by saying that all my dreams of matching Christmas outfits and beautiful pictures did not come true this year. While we did have a great Christmas, we were really not able to capture that on camera. Our Christmas cards ended up having separate individual pictures of each kid after MANY failed attempts and tears. I think everyone here except for Fred ending up crying during at least one of our photo sessions. Oh, well. Maybe next year. Here are some outtakes...

The Santa pictures were equally horrible. Bo was asleep in the line. I thought it would work out perfectly and we would just hand over a sweet sleeping baby. Then he woke up and just looked really confused and/or mad in all of the pictures. Womp, womp. 

Miller's class did a little Christmas program in which they screamed sang a few songs while wearing animal prints. It was super cute. 

Then, it was Christmas. 

Santa brought Disney tickets, which were hidden in Miller's stocking. Now, we had convinced her that she should ask Santa for the tickets but that he might not bring them because she might not  be old enough to go to Disney. When she thought she had seen all of her presents, she almost started crying because she thought she wasn't getting the tickets. She was trying so hard to be brave and act happy. It was really sweet. When she did finally find the tickets, she said "Oh, that's gonna be so fun!"and then just kept digging through her stocking. It wasn't the amazing moment I had anticipated, but that's usually how it goes right? We also started Elf on the Shelf this year. Miller started out terrified of it, but eventually got into it. She named her elf Elf. Anyway, Miller had a great Christmas and was really into everything. Bo just pretty much played with a gold ribbon and slept.