A Day in the Life

I wake to Lexington seizing in bed beside me. I brought her to our bed sometime throughout the night last night, like I always seem to have to do. I rub her sternum to try and elicit breathing and tell her she is okay and I am right here, and when it is over and she starts to come to, she lays her head down on me and dozes back to sleep. This happens three more times before it is time to get up for the day.

Unless we have an appointment, I lay in bed with Lexington until she is ready to get up. Some days that is 7:30 am, and others it is 10:30 am. It really depends on the kind of night she’s had. Trying to get up and get moving before her is pretty futile in the early morning hours, since that is when she seems to need me most. I’ve traded that in for late night productivity once the kids are in bed, rather than trying and failing in the mornings.

When we wake up, it is time for meds and breakfast. I put her in her high chair, which is now a permanent staple of our living room, and turn on her favorite cartoons or music videos. I crush up all of her many pills and mix with water in a syringe. I cut up her fish oil capsule and squirt it into water in another syringe. I check her NG placement with yet another syringe. I push the meds and the fish oil, fill a syringe with water, and flush the tube. Okay, time for breakfast now. I choose between Lexington receiving a full formula meal via NG or attempting partial solids/partial formula, based on what kind of night she had the night before. If she was seizing all throughout the night and/or morning, she will absolutely refuse solids. I create her meal, prime her pump, and let it run. This morning I guessed solids. I gave her 10 tiny pieces of baby cheese puffs. She ate 3 and threw the rest of them on the floor. Better luck tomorrow.

Now a half hour has passed. If Cael woke up with us, he patiently waited on the couch and it’s time to get his breakfast ready now. If it is still early, I get it ready and leave it on the counter for him, and let him sleep a little longer. Get my breakfast and coffee and go sit down next to Lexington…

I call 2 refills into the pharmacy. I check the status on 2 other refills. Somehow, all of our meds refill at different times of the month, and most of them can not be dispersed early. Joy.

I call to schedule an EKG, because Lexi started a new medication and we have to make sure her heart can handle it. Surprisingly and thankfully, they have a 12:30 available Monday, right after therapy. Rare for scheduling to work out so well, but I’ll take a win where I can get one.

Lexi’s pump beeps because her feed is done. I get a syringe of water, unplug her, and flush. Put up the baby gates and set her free in the living room. By now I have a sink full of dishes from everyone’s breakfast, but I leave it be until later. In about 15 minutes she will be sleepy and need me to sit down with her, so there’s no point in diving into housework just yet. 

If we don’t have a therapy appointment or doctor appointment to get off to, we can relax now. Finally, an hour or so after we have woken up, we can sit down and enjoy a minute together. Lexi is getting sleepy, and she lays on me and naps for 30 minutes to an hour. Her sleep cycles are so disruptive and her sleep is so UNrestful, that I can’t lay her down to nap. She will wake several times and immediately dose back, but if I am not holding her, she will snap out of sleep mode. It’s not a sleep training thing. It’s a brain dysfunction thing. So I sit, and hold her. I have so much to do, but it all needs to wait. I kiss her little cheeks and play with her hair and soak her in and wonder what is going to happen come the day she is too big for my lap, if her brain still needs her mommy for sleep. I push the thought away for another time. Although I still do, I know I don’t need to worry about that today.

Now Lexi is ready to wake up, and it is almost lunch time. Depending on the kind of morning we’ve had, we might just now be getting dressed for the day. If only I could blame that on laziness instead of chaos. Oh well. Judge not.

Cael was going to spend the night with Grandma tonight, and Lexi to spend a few hours over there this evening (the first time since July that Lexi and I have been apart for more than one hour). So I pack Cael’s overnight bag with everything he needs and a stuffed animal in about 4 minutes flat. No second guessing if I forgot anything or writing notes down. 

Time to pack Lexi’s bag, just to go spend 4 hours at Grandma’s house. I need to prepare another meal. Put all of her daily meds and supplies and syringes in her medicine bag. Write out her pump instructions and her new seizure rescue instructions and her miscellaneous instructions. 30 minutes later, her bag is ready.

It’s lunch time, so I try again with a solids/formula meal. She did a little better this afternoon, but today was not a great solids day. Better luck tomorrow. I check NG placement and run the pump. She’s tired, and about 10 minutes into it, I hear the “tired cry”. I was going to eat lunch and do the dishes. Oh well. I head to the living room, grab her out of the high chair and sit on the couch. Time for her real nap now. I sit with her for 2 hours while she naps, all the way up until Grandma arrives. Another one of those things, if I want Lexington to even have a chance at getting a good nap (and I DO so she can enjoy her evening with Grandma), I need to hold her. Again, not a sleep training thing, a brain dysfunction thing. Cael sits with me, plays quietly, brings me a snack, and anything else I might need while she naps. The world doesn’t deserve this boy and all his goodness, but I’m sure glad to be the one who gets to call him mine. Good thing I got their bags ready earlier…

Grandma arrives and I’m proud of myself that now an hour and a half after her feed has stopped running, when she finally wakes up and I can move again, that I remember to flush it with water. I should’ve gotten a syringe ready and brought it to the couch with me when she cried for me, but I didn’t think to. Another one of those things I’ll have to try to do better next time.

The kids leave and I don’t know what to do with my hands! Then I look towards the kitchen and remember the dishes that piled up all day I never got to. Cool that they’re with Grandma and I can do this now instead of at midnight. That’s a win.

Lexington’s G tube surgery is coming up and she needs a few things. Mostly sleepers, that button, with feet.  She will have an actual tube in her stomach for 6 weeks before they place a button on it. For so many reasons, I don’t want her sleeping in two piece pajamas until she gets her button. I’ll elaborate on the most important reasons, for curious minds: 

  1. One of Lexington’s most common seizure types is hyperkinetic. She kicks her legs or moves her arms, or sits up, or tries to crawl, or tries to reach out for things and grab them or pull them. She is not conscious when she does this. The very last thing she needs in her life is to grab her tube and displace it or cause herself pain before I can get to her.
  2. Okay – so put a tubie belt on her. Well, I gladly will, but remember that Lexington gets very UNrestful sleep. She tosses and turns and moves all night, which can move belts and shirts and layers. She needs as much protection as she can get, and I would like multiple layers of protection.
  3. Lexington wears an owlet now, but will be getting a hospital grade pulse oximeter shortly. This will go on her toe. I need to be able to access this without taking her entire sleeper off. Buttons! 

So, I go out shopping. And I shop for 3 hours. And I look high and low for 18 month, button up, footed pajamas…and I find NONE. I try not to let it discourage me, but it is just another reminder of how so much of this world is not set up to cater to Lexington’s needs, and I have to fight harder or search harder or find new exceptions for her. And it’s a real shame. With the help of some family and friends, I find some on Amazon. Going to spend more than I wanted to, but that’s just another aspect of special needs life. Nothing comes cheap.

Time to go pick her up and bring her home, while Cael has a much deserved sleepover. She’s had a difficult few months, and isn’t ready for a sleepover yet. Plus Cael deserves his own attention for the night. I’m really glad I sat with her so she could nap today, because she has had a super fun evening with Grandma and the family. That makes me feel good.

I get home and put her to bed. I feel lucky we were able to keep the house clean this week. That means chaos was at a minimum this week, and I can relax tonight, for a few hours…maybe catch up on a show while she gets a couple good hours of sleep, before she needs me again.


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