As I sat down to update about the most recent in Squeaker medical I couldn't figure out how to do it. I just didn't know where to start. Although nothing really has changed... I think... it just seemed depressing to write about it. For the moment I'm just going to post about daily life. I'll save all the medical stuff for another time.
Most mornings she wakes up and she immediately wants to go "outside pool water" I could be 5:30
in the morning and that's what she asks to do. I'm not joking she's done it. About 50% ehhh maybe 40% of the time I manage to drag myself out of bed and go outside with her (It will be less an less as fall comes) I try really hard to get her to eat something or play a little before we go out. That way I have a chance to wake up and stretch. If I can do that I don't feel like death and can really enjoy being with her. The last few days me waking up and moving just hasn't happened. Which has a lot to do with Squeaker not sleeping well. I have no clue why but she has been in uber cuddle and I'm going to lay on mommy mode. Which means I end up contorted, laid on, and smacked more than usual.
Once done with breakfast or pool or whatever we are watching the puzzles come out. Well the
puzzles were probably already out but we go back to them. Squeaker loves her puzzles. She is doing 24 pcs puzzles by herself now. The ones with little pieces... it's one of the few fine motor activities Squeaker will do consistently. One of the other activities she loves is her Cheerio book. We do that a lot too, which I really like. 1) Because what I'm supposed to do is well defined. When playing puzzles or reading the rules change. With her Cheerio book it's the same. 2) It involves food. Cheerios may not be high calorie but it is calories. 3) Fine motor skill work out. Have you ever tried to pick up one Cheerio at a time? It's fine motor skills at their best. Squeaker's occupational therapist loves that we have the book. 4) It travels well. I try to keep a bag of Cheerios in the diaper bag and I just have to grab the
book and no matter where we end up I have an activity and food for Squeaker.
About 9:30 Squeaker goes in a wakes up Trey. Trey works from 3pm- 12am at a call center. Which means he doesn't get home until 12:30 and often isn't asleep until 2am. So yes I am an awesome wife and let him sleep, most days. If I am sick or Squeaker is more than I can handle I will get him up earlier to help out or even take over so I can sleep. I try not to do it a lot because I can nap later but some days it's just what has to happen.
Okay we get Trey up at 9:30. Squeaker will grab Trey's phone and climb into bed snuggle up close and play a game on the phone while he wakes up. Often I will go in too and we will snuggle as a family. Other times I'll start dishes, cleaning, laundry or just enjoy the few moments of quiet. By 10am we are now all up and moving, or in Squeaker's case jumping. I swear she never stops.
The next few hours are filled with trains, books, movies, music, tickles, puzzles, jumping, running, catching you name it we probably do it. Somewhere around lunch time we try to do family scriptures and prayer. It doesn't always work out but we do try. Then it's time for Trey to shower, shave, and dress for work. He leaves at 2:30.
Once we say "bye, byes I love you" Squeaker and I head off to the bedroom for nap. Naptime can be a great time as any mom will tell you. I especially love it because I get to sleep in the big bed. See at night Squeaker and I sleep in the TV room. Squeaker is on couch and I have twin bed pulled up right next to the couch. My bed is comfy enough and it's much better than the couch, which I slept on for 2 years. But for nap time we sleep in the master bedroom in the big bed. The bed that has the 3 inch memory foam topper on it. The bed that assures minimal sleep smacking from my toddler. I do not understand why this set up works but it does. Night time in the TV room and nap time in the master. We tried several other arrangements and they were giant flops. So for now this is the way.
After nap which can last from 1hr-3hrs. It's time for more play. It's pretty much the same as before. Even the requested to go play in the pool. Not that I can blame Squeaker we do have a pretty nice set up. We have a slide that goes into a little plastic kiddie pool. Those sit right next to a 6ft wading pool, which she loves to crawl/swim in. Honestly it's like having a mini water park. When we do get outside I will do some work in the yard or just hang out with my feet in the wading pool. After pool is the same inside games we did in the morning.
If we do have errands often we will do them in the evening. Just to break it up, and it gives me a break from entertaining a toddler. Oh and it cause lots of running on Squeaker's end so she gets good and worn out for bed.
Ahh bed time. This tends to happen around 9pm. I know that "experts" will say that is too late for healthy sleep. I'm my expert opinion they can eat their own books. I have read so many articles and things about sleep training, no cry sleep, early to bed/late to rise toddlers. I've also tried most of it, it just doesn't work for Squeaker. For a while there this kid just didn't know how to sleep at all, naps or night time. Now that we have some sense of schedule that works for our family guess what I'm keeping it. If the experts don't like that my child naps later in the afternoon and I let my child stay up until 9-10pm then they can come and wrestle her to sleep, cause more anxiety, stress, and breathing distress. I will NOT do that to my child.
Okay rant over... About 9pm I give Squeaker her "yuckies". This is her sleeping med, an antibiotic, and pain killers. Depending on the level or tiredness Squeaker maybe out in 15 minutes, like tonight, or it may take an other 1 and a half. Sometimes I will do treatment to help Squeaker fall asleep, and other times it happens after she is asleep. I kind of leave that up to Squeaker. If she wants treatment she gets it, if not I'll happily let her try to doze off on her own.
I'm sure you have noticed I have a lot of pictures of Squeaker sleeping. I bet most parents do, I'm just willing to share them more often. Getting Squeaker to sleep used to be a nightmare. And then keeping her asleep could be just as hard. I'm not talking about once and a while I'm talking nightly. I would be up at 1am holding her, rocking her, praying she would go to sleep. Other nights she would fight. I'd have to keep her in a bear hug for 10-15 minutes while she screamed, tried to kick, and I sang to her to keep Squeaker calm enough to avoid breathing distress. Those where just the things needed to get her to sleep the first time. These techniques would have to be repeated during the night. When Squeaker is sleeping in total peace I can't help but share that wonderful moment.
As of now with a sleeping medication Squeaker still wakes a couple times a night but because the stress and anxiety have been taken out of it she will fall sleep much better. Most of the time it's just a matter of grabbing a bottle and rolling over. I often don't even remember these encounters, or I can't tell them from the dreams. But it does still disrupt my sleep cycle. Of course there are still other nights where it's really rough but we've gone from nightly battles to ehh twice a month. I'll take it.
So after some sleep, you never know what your going to get. Squeaker wakes up between 6:30am-8am. The process will start all over again.
With Squeaker's crazy sleep schedule I'm awake at odd hours and for long periods of time. A lot of times I'm too spaced out to do anything. But there are nights where I'm wide awake listening to Squeaker breathing or just waiting for a freak out of some kind. During that I'm I like to be productive. I'll research different school things, or understanding a diagnosis, this is when a lot of flash cards get made :) 
