It’s been a hectic, stressful week. My anxiety was on overload a few days ago, and I was wondering how in the world I was going to handle another minute of my life. Grayson had surgery on Tuesday, my grandfather is very sick and isn’t expected to live much longer, and Charlotte continues to be of the opinion that potty training is for the birds and she just has too many other things to do to worry about silly things like bathroom breaks.

Thankfully, with friends talking me off the ledge and lots of sunshine, I actually had a great weekend and am feeling so much better than I was on Friday. Grayson is doing remarkably well (he had the hardware removed from his hips that was put in last year during his major surgery), I am planning to go to Michigan when my grandfather dies to be with family, and I’m just taking potty training off my plate for a week or so. Whatever.

All that being said, I’m trying to focus on the positives in my life right now and the things that I am loving.

1. HAMILTON- I am obsessed. I started listening to the soundtrack a few weeks ago and I just can’t get enough. Funnily enough, separately I am not too into history, hip hop, or musicals, but this show is just absolutely brilliant. I can’t get enough, and I am now binge-listening to The Hamilcast, a podcast devoted to all things Hamilton, and reading articles and watching videos on the show. Do I have any friends into Hamilton? I need to chat with SOMEONE about this!

If you don’t know what Hamilton is, it’s a Broadway musical based on the life of Alexander Hamilton, the first treasury secretary of the United States. I know, it sounds like a snooze-fest, but the story is so compelling and the music is just amazing. Right now it’s only on Broadway in New York, but will be touring the country in the next few years. But the entire story is in the music, so you can totally experience it with the soundtrack. DO IT.

2. MOVIES- I went to the movies for the first time in almost 2 years the other day. We saw Finding Dory with Charlotte. It was her very first movie theater movie, and she loved it and did so great. I’m excited for another (indoors, air conditioned) activity we can do with her.

 

3. POOL TIME- We finally live in a neighborhood with a pool and we’ve been going almost every day for several hours. I love that it wears the kids out and we are making new friends in our neighborhood. 

4. THE RANCH- My parents house in the country has been under construction for the last 18 months, and it’s finally almost complete. We have been up there several times and it’s a great place for a getaway. They have an amazing pool, tons of space to relax and of course lots of nature. 

5. ORANGE IS THE NEW BLACK- Season 4 is here! No spoilers please- we are only on episode 5, but I am loving the new season so far.

6. MAKE-A-WISH- Grayson’s patio and awning are complete and we are loving hanging out with him outside. I want to do a separate post on this with pictures, so I won’t post any tonight, but we are so excited about this outdoor space for him and our family.

7. HAPPY HOUR LIVE- You know I love, love, love podcasts, and this Tuesday my BFF and I are going to a live show with Jamie Ivey. I’m so excited!

8. THESE PEOPLE- They drive me insane several times each day, but they have my whole heart. I love being their mommy. 

What are you loving this summer?

A few months ago, Grayson had neuropsychological testing done. We requested this testing for him since he will be starting public school in the fall and we want to make sure we give the school a complete picture of his capabilities and potential. I was especially interested in learning/confirming his cognitive ability- my biggest fear for Grayson was that his intelligence and awareness were much greater than they appear and that his mind was “trapped” in his body. His neurologist has repeatedly assured me that is not what is going on with G, but I still worried.

Tuesday, I met with the psychologist to discuss his report. There were no shocking or upsetting parts to the report; basically everything in it confirms what his doctors have said and what we observe at home.

So many of these evaluations focus only on what a child cannot do and the skills he is lacking, but I love that this test focused just as much on G’s positive qualities and how they will be an asset to his learning and success in school as well as happiness at home.

Grayson was neatly dressed and appropriately groomed. He is a very handsome child with a beautiful smile.

Grayson was responsive to attempts at social interaction and laughed in response on several occasions.

Grayson frequently missed when reaching for an object on the first attempt but would successfully grasp the object after one to two more tries. When holding an object he was observed to move it from hand to hand.

Throughout the evaluation, Grayson was very sweet and good natured.

Within the domain of adaptive functioning, he has an area of relative strength with leisure skills where he demonstrates behaviors such as listening to music for fun and relaxation and participating in a fun activity on a routine basis.

The doctor emphasized over and over how G’s social skills and lack of behavioral and emotional problems are such a huge strength. He said this will be a huge plus in a school setting, because teachers and therapists will be more likely to respond positively to him and help him really succeed because he will be able to give them social feedback (and him being so cute doesn’t hurt either).

As for his cognitive ability, the report reads:

Based on observations of his behavior and parent report of adaptive behavior, his intellectual functioning is likely to be consistent with an intellectual disability in the profound range.

Sad, yes, but also somewhat of a relief. His mind isn’t trapped in his body. And I will take Grayson’s sweet, social, happy self a million times over intelligence.

Grayson spends most of his awake time at home hanging out in his beanbag chair or wheelchair, listening to his music and just being with his family. 99% of the time, he seems happy and content to do this, and I asked the doctor if we can assume that he is in fact happy and content if that’s how it appears. Absolutely yes was his response. This was a huge relief to me and takes so much pressure off trying to come up with things to do with G throughout the day to stimulate and make him happy. Turns out, we are doing just fine.

He also made many recommendations how G should be taught, using lots of manipulatives, therapies, and consistent routines. He said progress will likely be slow and incremental, but that his education will be worth the effort.

Worth the effort. Definitely.

Nolan, at 9 months you:

• Weigh 18 pounds 3 ounces
• Wear size 6-9 month and 12 month clothes, size 3 shoes and size 3 diapers
• Had your second hair cut last week
• Drink 6 ounce bottles throughout the day and eat about 2 solid meals a day
• Love eggs, avocado, cheese, and sweet potatoes
• Look just like Charlotte did at 9 months. You guys have the same face.
• Have zero teeth
• Usually take a good morning nap, but afternoon naps are hit or miss, usually miss.
• Still wake up about twice at night- ughhh. We usually put you to bed around 5:15 because you are so tired due to your afternoon nap refusal
• Love to watch people

Nolan, you are the sweetest, most loveable little dude and I adore you more and more each day. I’m looking forward to our summer together. Happy 9 months!