Darus loves to visit the Cabrillo Marine Aquarium in San Pedro. The best part of the visit, however, is leaving! Because Darus knows that after we trudge through the indoor aquarium, we get to go down to the Ocean and visit the tide pools. We planned our visit today, just right, and arrived during low tide. Darus loved to explore and he wasn't shy. At first, he was avoiding the little pools and skipping around them. I watched as he accidentally stepped into one and then he was hooked on getting his feet wet!
Boardwalk Games
4.75 year old Darus - watching his fave episode of Team UmiZoomi!
Fecal Smearing
Yup. You read correctly. Gross. I know. I hesitated writing this post. I really did not want to write this post. But I believe that honesty is key. I want to keep it real. Furthermore, since this blog is intended to serve 3 purposes (help family/friends to understand my daily life, help me to keep track of my daily life & to help other families that are dealing with special needs), I am hopeful this will provide color to all. With that said, "shit happens".
I was excited to make dinner tonight. Darus was in a super groovy relaxed state, post OT, and was tinkering in the backyard. Ever since Jonas secured the backyard with gates on both sides, I've felt pretty comfortable knowing that Darus would be safe. As an extra added measure, I made sure that the backyard was free and clear of dog poop.
Operation - Sushi! I started the rice on the stove. I opened the gobo root packages, peeled and sliced cucumbers and avocados. I had the edamame defrosting in a bowl and the shishito peppers readied to be blistered. I was well on my way to having a real meal prepared when Darus came toddling into the kitchen through the back door sans his pants and diaper.
My nose could smell it before my eyes could process it. Shit on his feet, hands and even a little bit near his mouth. I froze. I hardly knew what to do! By the time I was able to move, he had already put his hands on the countertop near the sink. I grabbed his wrists and walked him back outside to investigate. Sure enough, by the side gate, there it was. Poop everywhere. Poop on the ground. Poop on the gate. Poop over the gate.
What's a mom to do? I got the hose. Thankfully, the weather was decent, so this was a viable option. I first hosed Darus down as best I could, as much as he'd allow. I then attempted to hose away the shit on the ground and gate - as best as I could. Then it was time for a shower for Darus. And by the time he was midway through, I realized, I needed one too. We both washed our hair & bodies. Afterward, it was pajamas and a cartoon for Darus, while I finished cleaning up outside & the kitchen.
Meanwhile, the sushi rice was way overcooked and under-vinegared.
Once I put Darus to bed, I made new rice. I was determined. The rice turned out, but the rolls did not. Upon attempting to cut the first roll, I learned that our sushi-cutting knife needs to be sharpened.
The best laid plans, often go awry. I'm okay with that.
The silver lining you might ask? My shishito peppers turned out perfectly!
Internal Compass
Darus has an internal compass and we've known about it for quite some time. From the time he was about 2.5 years old, he knew where home was, and would like to tell us, "back home". When we'd be driving in the car and close to home, if we didn't make the right turn, he'd let us know! The past few months, we've been doing a lot of neighborhood walking (him actually walking - not in the stroller). He has certain routes that he likes to take and he doesn't deviate from them! Unsurprisingly, this morning, when I took a different route to school, Darus was concerned! He was rather anxious for a majority of the ride, but sure enough, once we got back on Lincoln Blvd and closer to school, his anxiety dissipated.
"I want cartoon!"
As most children with special needs, having a schedule and/or routine is quite important. Darus is no exception to this rule and he likes to know what to expect. The evening pattern since the time change has been pretty solid. Dinner, playtime/walk, cartoon, bath/shower or Jacuzzi, then time for bed. The pattern changed tonight. The cartoon was omitted from the sequence. And even though Darus didn't lose it, he let us know that he knew! After a nice long lavender infused shower, I helped him to his room where we typically get him ready for bed. As soon as we got to his room, he started crying. Once Jonas and I calmed him down, we asked him what was wrong. He said, in a language that only Jonas and I could understand, "I want cartoon!" Jonas told him that if he was a good boy and helped his mommy get him ready for bed, he could watch a cartoon in bed with Daddy. It worked! Darus cooperated and helped with his diaper/pajamas. Once he was fully dressed he grabbed a blankie and went straight into our bedroom to watch a cartoon with Dad. It was really sweet.
Communication
He talked. We listened.
We heard his words and we honored them.
#communication #phelanmcdermidsyndrome #autism
Soccer
Darus has been in and out of soccer since September. It's been a great experience for us all! Darus has done really well and Jonas and I have met some really great friends! Thank you, VIP AYSO!
Soccer!
It Takes a Village - Disneyland
Thanks to Auntie E, our Caregiver L & the wonderfully talented staff of Darus' preschool, Darus got to go to Disneyland today!! Darus spent nearly all day at the park! He had so much fun. He went on a lot of rides and even went to see the animals at California Adventure!
Thank you to Disney for providing access to as many guests as possible via your Guests with Disabilities access pass & other services!
Space Mountain Darus
Psychiatrist
We met w/ Darus' psychiatrist this afternoon. We presented our findings from GeneSight and discussed the results with her. Latuda & Seroquel both seem to be used in the PMS community, and since they both showed up on Darus' test as greenlit, I was interested to hear her feedback. She felt as though Darus is too young for either of these drugs. We decided on Abilify and we're starting w/ a dose of .5 mg.
*Update - today is day 3 with this new medication. In addition to the .5 mg of Abilify, Darus is also currently taking 2 mgs of guanfacine (Tenex). He takes 1 mg in the morning and the other mg in the evening. Darus has been very sleepy. The Dr said this would likely happen.
Echocardiogram & EKG
We were back at 200 Medical Plaza today for some baseline testing of Darus' heart. We first had the echocardiogram, which is an ultrasound of the heart. The technician performing the test took nearly 150 pictures of Darus' heart, all from different angles and using different probes/transducers. He said that a cardiologist will review the images and report back to our pediatrician.
Next up, we went downstairs to the blood lab for the EKG. They were on number 80 and we were given 102. Eek! Jonas and I took turns walking around w/ Darus. And there was one point where Darus insisted upon laying on the ground. We received a lot of dirty looks from other people for allowing him to do this. No worries! I'm comfortable with picking my battles with him!
We finally got called into the lab and did the EKG first. It was a breeze compared to the echocardiogram! The technician hardly had him on the wires for a minute, before she was ready to take them off! Press the easy button!
Next up - blood draw. Darus does pretty good with these. The challenge is holding him still, long enough for them to get all the blood they need. An additional nurse came in to help -- and, of course, UmiZoomi on the iPad was golden!
Neuro Ophthalmologist
We were back at UCLA today to meet with a neuro-ophthalmologist. Because Darus was unable to complete a standard eye exam at his pediatrician's office during his 4 year check-up, the pediatrician recommended we go this route.
The appointment went a lot better than the endo appointment. We had barely any wait at all prior to being called into the exam room. We met w/ the resident first, and I explained my concerns to him:
1. During Darus' EEG in October 2014 - the attending neuro was concerned that his pupils weren't dilating properly
2. Sometimes Darus' eyes appear to be slightly crossed, to me
The resident took a closer look and politely dismissed my concerns. He felt as though Darus' pupils were dilating (constricting) appropriately, and he also told me that because the bridge of Darus' nose is so flat/broad -- that's why I sometimes might think his eyes are crossed. It's an optical illusion.
I shared the same concerns w/ the specialist when she came in for her exam and she had the same advice as the resident. She was also able to complete the exam and said that Darus did not need glasses. She said his ability to see objects far away was normal and that his ability to see objects up close was still developing. She said it was normal for his age. She was not concerned.
She also did a quick internet search to see if there were any specific things she should be looking for, with regards to his PMS dx.
Just when I thought the exam was done, she said, "okay, now I'll just put some drops in his eyes and you'll wait 30 minutes and then I'll be able to check his optic nerve, and then you'll be all done!" ... Ummmmmmmm, really?! Yikes! I told her that would be really difficult for us and she said, "well, his eyes are light, so they will probably dilate quicker - just let the front desk staff know once they are dilated and we'll get you back in the exam room." Fair enough. 12 minutes later and we were back in the chair! This final portion of the exam proved to be the most difficult, but we got it done! All in all, a success!
We will be back to see her next year for the same exam.