Naomi's new school year started on August 14! Although she doesn't look it in the pictures below (because she is still refusing to smile for the camera) Naomi was very excited to be back at school. She has done all of her favoite things already...riding in her van, building people, playing with her friends and teachers, swinging outside, etc. She has also been doing her work, too, which in her case is physical therapy, occupational therapy, speech therapy and visual education. Now, you may recall me mentioning that Naomi has been sleeping in late in the morning and not napping most of the time, which we were very thrilled about because that kind of schedule works perfectly for school. It was also really nice for Mommy and Daddy, who were able to put her to bed at 7:30pm instead of 9pm, thereby enjoying an earlier (though still late) dinner and having some alone time together. So what do you think Naomi did on the morning of her first day of school? Sleep in until 8am like she had been? No. Naomi woke up at 5:45am and has napped 3 of the first five day of school AT SCHOOL. Sigh. She's napped all of her non school days too. And some of her naps were ridiculously early, like at 11am. Naomi hasn't napped that early since she was about 18 months old and transitioned from two naps to one. As I always say, when I zig, she zags. So we are trying to get her back on a good school sleep schedule, but Naomi's is the boss of her own sleep and it remains to be seen if she will cooperate.
All dressed and ready in her new First Day of School Dress Mommy made!
I'm not looking going to smile for the camera, or even look at it.
Getting loaded into her van!
Strapped in tight and ready to go!
Almost home after her first day.
A good first day it was, too, even if she did inappropriately nap.
Mommy and Daddy's cute girl.
No, I'm not going to smile for you after school either; I just want you to take me to Papa's house to go swimming already.
Thank you for taking an interest in Naomi. It has been a long, hilarious, horrible road the last three years. If you have enjoyed our blog (or didn't but are fabulously wealthy) we are trying to raise money for Batten's awareness and research for a cure through a 5k run on October 20th, organized by our awesome friend (and secretary of the Naomi Kathleen Caughey Foundation) Lena Fairless, and a spontaneous and generous jewelry sale for which 20% of proceeds go to the Batten's Disease Support and Research Association organized by my mother's college friend Donna Russello's daughter Diane Bresler. Please click on the links below for more information and to donate. Please consider giving to this worthy cause.
Naomi is having the best summer ever! She has been swimming nearly every day that it has not been cold or raining, and is currently on a 16 days and counting swimming streak. She loves swimming. She laughs and squeals with delight the whole time. She loves getting her hair wet. She loves floating on her back in someone's arms. She loves splashing, with her hands and especially with her feet. She loves being in her raft and is really good at making it go by kicking. She's very proud of herself for this new skill. We're thinking maybe we should put canals in our house so she can be mobile at home too. It would be easier if she'd just learn to use her walker, but she resists it greatly. If you know Naomi, you know she is extremely opinionated and stubborn and that it is VERY hard to change her mind.
Naomi completed her three week summer school session two weeks ago. Most children probably consider summer school to be a terrible injustice, but Naomi loves school and she loved going to summer school. Riding in her van, seeing her teachers and her friends. She had a great time.
Naomi also loves amusement parks. She's a real wild woman. She has been to DelGrosso's in Tipton, PA, about a 20 minute drive from where we live, three times already this summer. DelGrosso's is a great little family friendly amusement park. They also have water slides and a pool. It is small and compact, but has a good selection of rides and really good food. Young children really do well there. We want to take her back at night when all of the rides are lit up, too. Naomi loves lights, especially if they are flashing lights. She has since she was a little baby. Yesterday we took her to Idlewild in Ligonier, PA. Objectively, it has to be one the of the best amusement parks around for children. It's not too big and is nicely shaded with a lot of trees. It has rides, many of which are antique and really charming, a section called Storey Book Forrest which has little houses and figures and such that bring lots of Mother Goose rhymes to life (I loved Storey Book Forrest as a child. We only went to Idlewild once when I was a child, around age 4 or 5, but I thought about Storey Book Forrest for the rest of my childhood, and beyond, if I am honest. It was great seeing it again, especially since I was able to suspend disbelief and see it with the same eyes I had as a child.) There is also a water park section with water slides and a wave pool. Naomi had a great time at Idlewild. I talked to her about it with her cards afterwards and she said she liked it and wants to go back. She also said she likes DelGrosso's better, which was good to hear since it is so much closer.
Here's a little picture show of our day.
Naomi and Daddy are on the first ride, The Balloons. This was her favorite ride. There was extensive laughing, screaming with joy and delight and making her legs very stiff (one of Naomi's signs of happiness and excitement.) Daddy got a little dizzy on the ride, but he loves his girl so he rode it twice in a row with her since she was having such a good time on it. See below for pictures of Naomi laughing, stiffening and squealing with delight on the Balloons. She is so cute, and when she is having fun like this it just makes our hearts soar.
After the Balloons we rode the train through Mr. Rogers Neighborhood. Naomi also loved this ride. I was uncertain, because the ride stops every 30 feet or so for a conversation/message from all of the characters in Make Believe and I thought she might get upset at all the interruptions, but she loved it. Laughing and squealing again, joining in with the crowd. It was wonderful to see her interacting with her environment that way. After Mr. Rogers it was time for lunch. Naomi had her bubba and Daddy and I had park food. We were pretty quick. Naomi seemed subdued after she finished her bubba, but we figured she'd get wound up again when we put her on another ride. She'd been happy and having fun all morning. So after lunch she rode the boats. And immediately fell asleep. At 12:45. Fell asleep! On an amusement park ride! Seriously, who does that? It is even more outrageous when you consider that Naomi is trying to drop her naps and only naps about half the time now. And when she does nap, it's usually late, late, late in the afternoon. Except for yesterday, and last Saturday, when she fell asleep during her weekly Saturday morning therapeutic horseback riding session. We'll need to post soon about horseback riding, too. That's another activity that is making this the best summer ever.
Here are some pictures of Naomi SLEEPING on the boats.
After the boats, and while Naomi napped for 45 minutes, we walked through Storey Book Forrest. Naomi did not participate due to her apparent extreme fatigue, but we did get her picture in front of some of the vignettes. Note that she is catching flies, that's how deeply asleep she is. Again, outrageous.
Naomi and Daddy in front of Mother's Goose's giant storey book.
Naomi and Daddy in front of the Crooked Man's Crooked house.
Naomi and Daddy in front of the sign for the Three Bear's cottage.
After Naomi finally woke up and refreshed and rehydrated with some juice bubba, she rode the cars on the little race track...
and then the cars that go around in a circle, and then a few more othe rides. She was having so much fun. Just being delightful. Very patient waiting for rides to start, even having fun strolling in her wheelchair from one attraction to the next. She's such a good girl.
Here's a little video of Naomi being patient waiting for the ride to start. She and I have been working on her patience all summer. And she's making some real progress! This means there is a lot less screaming when things don't happen as quickly as she wants them to, which is instanteously.
After we did all of the kiddie rides Naomi could do, we decided to try some of the bigger rides. Idlewild has a lot of antique rides that could not accomodate her little brown chair she rides in, (it's called a Special Tomato chair and it is wonderful) which was too bad, but she still had a great day. I have to say, the staff at Idlewild was excellent. They were all very nice and very accomodating. They even have a special policy for disabled kids where they go to the front of the line and can ride twice in a row. This was so helpful, as it is difficult getting her and her chair on and off the rides, and she tends to have less stamina than other children, so it is nice to be able to pack in as much fun as we can in a shorter amount of time. Anyway, the first big ride we did was the egg scrambler. This ride made Daddy very sick. Naomi liked it at first until it got up to full speed and she couldn't keep her head up. So she cried during the middle part of the ride, but stopped crying and started smiling again as soon as it started to slow down. I'd try her again on it. The last ride we did was The Whip and she was all smiles for that. At this point, it was nearly 4pm, the sun was blazing and the temperature was in to the 90s and Mommy and Daddy were beat. Daddy wanted to take her to the wave pool, but I resisted because I was ready to go home. I felt guilty about this later that evening, because she probably would have really liked it, but we did stop at Grandma and Papa's on the way home and she had a good swim with lots of laughing and happiness, so all was good in Naomi's world.
Below are pictures of Naomi and Daddy on the Scrambler.
Today we took Naomi to Del Grosso's Amusement Park, a small park that has a ton of kiddie rides in Tipton, PA. We went with Auntie Laura and Grant, Auntie Sarah and Uncle Brent with Margot and Grace, and my friend Hass with his boy Max. It was hot, real hot. 95 degrees hot according to the thermometer at the park.
Naomi had never been to an amusement park, but really liked the train at Christmas (see previous posts) and so we thought the kiddie rides would be perfect. Things started off pretty good. Naomi rode some simple around and around rides and stayed balanced and was helped by her friends. It was not very crowded and I was able to put her on and get her off of each ride. On about the fourth ride, we had Naomi and Max in a little car ride that was a two seater. Although the park was nearly deserted, the teenager running the ride felt the need to wait for the ride to fill up and Max and Naomi started crying before it began. About halfway through Naomi lost her balance and was crushing Max, and both were screaming. When the ride stopped, the attendant rushed to the screaming children and pulled Max out, not realizing that Naomi was disabled and couldn't catch herself. She smashed her face on the side of the ride and chipped a tooth.
We consoled her and rode the train as a family and she fell asleep, stress sleeping. When she woke up, we tried the merry-go-round but I think the trauma and the heat did her in and we left after about three hours.
Ready to go
This might not be so bad
I am mildly interested
maybe not
It is good to have friends
I don't like the turtles
With my friend Max
Max had the right idea on this one
Things are nor going well
Naomi is trying to drive
Right before the terrible incident
Stress sleeping
I'm done
All in all, a mixed bag. We want Naomi to experience things, have fun with kids, etc. On the other hand, because she is disabled and has already been dealt a raw deal we don't feel that anything else bad should happen to her. Obviously, these two things are not compatible. Kids chip teeth, break bones, get sick doing things. We are going to get Naomi right back on her horse, literally, because tomorrow she is going theraputic horseback riding. We will put a helmet on her.
Today I had a wonderful father's day with my bear. She was up at 6:30 to wish me happy father's day and we snuggled and listened to her songs in bed for a while. At 7:30 we got Mommy up and they gave me very nice cards and two ties! Here are the pics. I told Naomi that I love being her father, and we watch extra shows together, just the two of us. We went swimming at Grandma and Papa's house and the sea lion spent 2 straight hours in the pool. It has been a great day!
First of all, Naomi's first nanny, Jenn, is back with us! We love Jenn and Naomi loves Jenn so we are really glad to have her back. She comes and spends several hours with Naomi every weekday morning. They have a lot of fun together. Jenn helps her play with toys, gives her juice bubba, reads her books, pushes her in her swing, takes her for walks in her stroller and cuddles with her. She is very kind and compassionate and we are very lucky to have her. She makes caring for Naomi so much easier for both Mommy and Daddy. We need to get a picture of them together. They are good friends.
Then, when Mommy first got back from New Hampshire, Naomi was into not sleeping very much at night, but very into taking long, luxurious naps with Mommy during the day. Mommy cannot deny that after being away from Naomi for 5 days she enjoyed these naps immensely as well.
I mean seriously, who could resist that cozy Little Bear?
Sometimes Mommy and Naomi were still napping when Daddy got home from work. Mommy was able to get awake easily, but a sleepy Bear did not want to get awake so easily. This was good for Daddy, though, because he was able to move in for a good restful snuggle with Naomi after a long day at work. So refreshing.
Of course, Naomi has still been going to school three days a week as well. She continues to LOVE riding in her van. Some days she has been a really nice girl and has done all of her work at school, other days she decides to not cooperate with doing her work and naps and cries instead. At school she has painted some pictures, which are really cute, and she made Mommy a Mother's Day card and potted an african violet for Mommy too. Of course, Naomi gets a lot of help doing these things.
Naomi also went on her first bike ride! Her cousin Grace turned 9 in the middle of the month and decided she wanted to celebrate her birthday by having a family bike ride followed by a family picnic. Neither Mommy nor Daddy are very strong riders, so ever patient Uncle Brent, who is a very good rider, towed Naomi on the back of his bike. Why is Uncle Brent being described as ever patient, you ask? Here is a picture of Naomi with Daddy before getting on the bike. She's being a perfectly nice girl.
Here is a picture of Naomi on Uncle Brent's bike. Really loud screaming and crying goes along with that charming facial expression.
So here's how the bike ride went down with Naomi. She screamed and cried, fell asleep for a while, then woke up and screamed and cried more. She didn't stop the screaming and crying until we took her helmet off. We're not sure if it was the bike seat she didn't like or if it was the helmet. Either way, Uncle Brent was a really good sport listening to that for the better part of an hour. Thanks Uncle Brent!
Naomi also at one point decided that she should spend ALL of her days watching shows. Like many children, Naomi loves shows. Like many parents, Mommy and Daddy think show time should be limited. She gets to watch shows while she eats breakfast and dinner (otherwise she won't eat) and when she is in her stander (otherwise she cries for the whole hour.) We thought this should be enough shows. We were very wrong. Naomi would just rage all morning until we gave in and put a show on. So we compromised and now she gets to watch an extra show after breakfast. Once we started letting her watch her after breakfast show, she started being a really nice girl for the rest of the morning again. Never ones to let an opportunity to snuggle with their really cute girl go to waste, Mommy and Daddy usually watch with her too, as pictured below.
Naomi also got a new swingset for outside. Uncle Joel spent two days putting it up for her. He helps us out a lot too. It has a bucket swing on it just like the one we have hanging in what is supposed to be the formal living room for her, a sliding board that Daddy has put her down a few times (she seems to like it) and a glider swing that she will be able to ride on with another child once we figure out how to securely strap her into it. (Mommy has some ideas.)
Naomi also had a grand Memorial Day weekend. It started on Thursday after school when she went for her biweekly sleep over at Grandma and Papa's house (her maternal grandparents.) Naomi LOVES her sleep overs there. She cried all day at school that day. The only times she did not cry at school was when she was having an inappropriate nap and when someone would ask her if she was sleeping over at Papa's that night. So she was rather unpleasant at school. Once we got to Papa's, however, she was just delightful. She has a couple of favorite activities there. She loves swinging on the front porch swing with Papa and she loves swimming in Papa's pool. It should really be called Grandma's pool, since it was her idea, but all of the grandchildren label everything as Papa's (Papa's house, Papa's car, etc, so we call it Papa's pool.) She and Papa swung extensively Thursday evening, and Grandma took her for a long swim Friday before her nap. She spent Saturday at their house as well, swimming with her cousins, napping, and then spending more time on the swing with Papa. She is very jealous, though, and gets very upset if any of her cousins get on the swing with her and Papa too. In Naomi's mind, he's HER Papa and no one else's. There are pictures of this, but not on our camera. It is over the top, to say the least. Sunday was the big Memorial Day picnic. More swimming, more napping, more front porch, and then Naomi got to stay up extra late and watch shows with Papa while Daddy finished playing Horse Race Canasta with Grandma, Aunt Jerry, and Uncle Brent. By Monday, Naomi was pretty tired and we had a low key day at home, followed by an attempt at swimming that she did not enjoy, and then more time with Papa on the front porch, which she enjoyed very much as usual.
In other Naomi news, she got some really cute new hair barretts from Daddy's college friends Dave and Devon and their cute little five month old girl, Avery, and, she is refusing to smile for the camera. See below for the most pleasant expressions we have been able to capture, and for the new flapper girl hairstyle Mommy does with the barretts.
