Team Koko

We had some technical difficulties today with Dakotas continuous glucose monitor. We put a new monitor on her late last night, but when I went to check it today, I got an error. Unfortunately the error said we had to put on another new monitor. 🤦🏻‍♀️ She’s not terrible with us putting one on, but she doesn’t love it. So we’re talking about when we’ll do it (make sure she’s not upset, after bath, well before bed…) she was tired of listening to it. She went to the med cabinet and got out the finger stick glucose checker! Like if y’all are so worried, just stick me!

I’m telling you, she’s too smart. So we did. A finger prick told us her sugars are good, no need to panic, we could wait until the evening to put a new monitor on.

It’s sniffle season! And Koko has a hard time understanding when her nose is stuffed or what to do about it. She just came into the kitchen this morning grabbed about 10 paper towels off the roll to try to wipe her nose. Then she kept coming to me and trying to put my hand on her nose as if there was someway I could fix it, poor baby, so that’s when I fire up a pot of water on the stove, a few drops of peppermint oil and the house smells like Santa’s workshop and everybody’s nasal cavities are clear! Lol 

What a Wednesday so far! Koko was not feeling it this morning. She woke up and chose violence. Well, that’s a little dramatic, but she did try to claw me a couple of times. I think she was confused by her school having a Thanksgiving celebration Yesterday. Which I get because they’re having a half day today. But when I woke her up for school, and she realized she didn’t get to stay home today, your girl was pi**ed. So a little scratching, and a little yelling ensued. She also decided that the shirt and bra she was wearing had to go. So all of this while I’m still trying to get ready for the day, so I’m running up and down the stairs to grab her new clothes, or keep getting myself ready while making her breakfast and doing her meds. Things started to calm down as we were getting closer to leaving For school, so I’m thinking Awesome, just a little hiccup this morning. Then only after I have her coat and shoes on, and we are out the door, she is walking down the stairs and I get in front of her do I realize that she has leaked through her diaper and peed all down her pants, think Billy Madison at the water fountain. Dakota was definitely cool. So as we know making a quick change in plans and routine is really confusing for Dakota, but I did coax her back inside to let me change her diaper, another run up the stairs for some clean pants, and as I’m on my knees in the middle of the living room, my Apple watch buzzes. I’m thinking, my God, what alarm is going off, what have I forgotten to do. To my surprise, it was just the Fitness App telling me that I had closed my exercise ring for the day, and here we are not even at 9 AM! I guess this girl is good for my health.

Spending this lovely fall afternoon focusing on gratitude. I usually manage to do something special for the teachers, transportation, and caregivers in our lives when the holidays come around. We’ll make sure we have some sort of small gift prepared on her last day of school before winter break. But in my personal growth process this year, I’ve really leaned into immense gratitude. So this year, I’m sending out cards to any and all of the other people who have touched Kokos life, helped us along our journey, or gone over and above their job. Like the speech pathologist that through countless observations and sessions was able to get Medicaid to approve the purchase of the iPad and her communication app. Or the nurse at her doctors office who makes so many accommodations for us when we visit and makes herself available whenever we have questions or concerns. The family coordinator that spent the past 9 months getting all the specialists on board for Kokos dental appointment. These people make such a difference in the lives they touch when the simply show up in a world that doesn’t want to, and then when they chose to do more and be more?!?… I know it’s just a greeting card, but I want them to know they’re in this mama’s prayers and we will not soon forget the kindness they’ve shown us.

Who are you thankful for today?

It’s our first night with the continuous glucose monitor. It’s the freestyle Libre 2.

While it certainly wasn’t easy to put it on her, it’s done. (For two weeks anyway, when we will replace it.) She was scared, and scratched our hands just a bit trying to hold her arm in the right position. And it wouldn’t have been so bad, but I was super hesitant on making sure I got it in a good position. But our biggest concern was here having issues once it was on, however she doesn’t even seem to realize it’s there! As soon as we were done she was fine. Didn’t mess with it all night.

I’ve done 3 readings tonight, this is so awesome. I just hold my phone up to the monitor and the app generates the reading. Not having to stick her and I can check it after everything she eats and really see what does and doesn’t spike her blood sugars! I’m stoked!

Praying it continues to go smoothly for her.

Thank you everyone who has reached out with support and all your prayers. The ICU did release her in the middle of the night. While they stress to us, the need to continue to monitor her blood sugar levels and administer insulin, it didn’t take them long to realize she would not tolerate being at the hospital without being sedated. Your girl gets fightie! After pulling out multiple IVs, and fighting even the simplest things, such as her blood pressure being taken, we discussed with the hospital staff, the risk and the benefits of keeping her there, or bringing her home. So we elected to bring her home, we have a glucose monitor, (we haven’t been able to attempt at yet, as she is still in bed.) and we have Metformin to give her to try to regulate her sugars.
We understand that she has likely developed diabetes, perhaps related to her high doses of antipsychotics, her poor diet, and weight. Or a combo of it all. We will meet with endocrinology once her A1c test results are available in a few days.
Pictured is her 30 minutes ago, still in bed. I imagine her poor body is exhausted from yesterday’s events. But I’m so happy to have her home in her own environment.

Now prayers for the finger stick! I’ll let y’all know how it goes!

Update: not the best.
She finished up the dental procedure a few hours ago. They did have to pull one tooth and fill a few cavities.
But while they were doing that her labs returned to reflect her blood glucose level at 460. They began insulin immediately and have continued to monitor since. It is slowly coming down, but now they are trying to test for diabetes or determine what caused it to be elevated.
So we’re admitted to ICU for the night. (Unless the are drastic changes this evening, which we’re praying for. We like our own beds.)
But please continue to pray for ya girl

Prayers for Team Koko. We have a scheduled procedure this morning. Dakota is undergoing anesthesia at Portsmouth Naval Medical to address a few issues that can only be done under anesthesia.
She’s having her teeth taken care of, cleaning, filling any cavities, and removing any bad teeth (hopefully we won’t have any of these.) She’s also having labs drawn that are needed to be monitored due to some of the regular meds she’s on. And lastly, updating her immunizations.
It’s been over a year of coordinating all these services to be done on one day. We are grateful for the nurses and doctors who have helped us make this happen and all the staff that will assist today!
They just took my baby back to get started. I’m an ocean of emotions, but I know everything will be fine. She does not do well coming out of anesthesia, so the hardest part is the recovery. But we’re praying that she comes out calmly and we can get her home to recover in her safe place on her couch.

You know it’s “that time of the month” when Koko comes in requesting hot chocolate and potato chips!
😂😂😂😫

We drove to Williamsburg for some Wendy’s.

For those that don’t know, we live in Hampton, about 50 minutes from Dakotas doctor in Williamsburg.
Today Dakota had an appointment, however last week, I had to put my car in the shop. Thankfully, Dusty let me borrow his car to take her. So Josh and I took off work, because it’s just easier as a pair. We get to the docs office, go inside, aaaaand they have no power. Can’t see patients, understandably.

And while I understood, my heart still dropped, I could’ve cried. All the planning that goes into these visits, for nothing.

But, I believe I am truly growing. I told the nurse, who remembered Dakota 🙂 that I’m super disappointed but I know it’s no one’s fault. We’ll deal with it and reschedule. And I’m just glad that I don’t stress out as much as I used to. Prayer, meditation, and understanding that I will know how to handle whatever happens, has reduced my anxiety a lot.

So, we got some Wendy’s and came home. Only took us a few hours, lol 😂

I wish my week looked this fun!
This is Koko’s ESY (extended school year) calendar for this week. Ya girl is literally going places!

I had to add to this! Ya girl stayed in the pool for an hour! Longer than normal and actually got out into the deep end for a good amount of time and is teaching herself to float. When she finally got out around 8pm she got her night time meds (15 minutes later than normal.) I got her changed and she grabbed me and Dayla and went straight to bed to snuggle for a few minutes. She normally falls asleep around 9:30-10. Last night, 8:30! And it’s almost 9 am and she’s still asleep! She wore herself out! 💁🏻‍♀️ Win!

This makes my mama heart so happy!
For those of you that don’t know, Koko is an indoor, couch surfing, air conditioning queen. Despite my best efforts, I have yet to find an exercise or even physical activity she enjoys. And she doesn’t even like sitting outside with us. So when summer comes and she joins the fun, gets fresh air, and even a little movement in the pool, it means the world to me. I’m not joining her tonight, but I’m sitting on the diving board with my feet in just chatting with (to) her.

This makes my mama heart so happy!
For those of you that don’t know, Koko is an indoor, couch surfing, air conditioning queen. Despite my best efforts, I have yet to find an exercise or even physical activity she enjoys. And she doesn’t even like sitting outside with us. So when summer comes and she joins the fun, gets fresh air, and even a little movement in the pool, it means the world to me. I’m not joining her tonight, but I’m sitting on the diving board with my feet in just chatting with (to) her.

Gearing up for what hopefully will be a successful next two weeks of Kota out of school while I am working from home. The goal is to try to set up at least one activity before I begin work and another on my lunch break to keep her mind working and engaged. Pray for me y’all!!! 🤞🏼

As I sit here in the car line, waiting to drop Dakota at school, it dawned on me that she is wearing the same shirt today that she wore yesterday. 🤦🏻‍♀️
You see, Dakota has sometimes hourly wardrobe changes … half of the time she will purposefully drip a little bit of her drink on her shirt, and then ask to change it, the other half of the time she just wants to change it for no reason. And the same with her pants. So while she wore that same shirt to school yesterday, she’s been in five other shirts since then, lol. And lucky for both of us, I am a laundry, champion! I wash, dry, USUALLY fold, SOMETIMES put away at least one load of laundry every day. So I just grabbed this one from her pile, and didn’t realize until it was too late, but here we are. Hey, at least I know she’s fresh and clean. lol

It’s Teacher Appreciation Week and leave it to me to wait until the last day! 🤦🏻‍♀️ But all teachers, especially special needs deserve to be celebrated all day, every day. They either make your child’s, and therefor your, life better or they can make it tougher. We have been blessed these past few years to have the most amazing teachers who give over and above of themselves. I feel like they truly want what’s best for her and want to see her succeed.
We’ve got fun little buckets with salty and sweet snacks, a candle, AND a lil liquor store gift card. Never done those before, hopefully it won’t be an issue, and everyone can just keep their sense of humor (check out the cards) but I guess we’ll find out!

As Autism Awareness month comes to an end, I know I didn’t do it justice this time. I normally have videos and answer questions, and I did none of that. I’ve not felt well the past few weeks and have been too drained to put forth the effort. My only hope is we are spreading awareness year round on this page. And we will continue to do so. Only more. I really want to build this community to inform, advocate, and of course spread love and awareness.

For picture purposes, please enjoy this recent photo of Koko falling asleep at the table, 2 minutes after begging for more food to be cooked. 🤦🏻‍♀️