I settled in for a good night of sleep on Friday night at midnight. Elise woke me up at 4:02 a.m. making some loud "grunting" sounds. This is how she wakes up every day. There is a small window of time when a decision needs to be made to just let her make noise a little while, or check up on her, get her changed and hope you can get her back to sleep before anything additional needs to be done. Not getting out of bed is really not an option as it generally leads to her having a seizure, falling and hitting her head, and running the risk of injury. I chose to get out of bed.
To my surprise, she had apparently been up a while and had put herself back to bed. (Note: she doesn't put herself back to bed when we are with her. She "plays" like she can't muster the strength to do it.) Her diaper was laying on the floor, weighing in at about 15 pounds, her sheets and pajamas were thoroughly soaked, and she was freezing cold. I made a quick make shift bed on the floor, stripped her down, cleaned her up, and put on new PJ's, stripped down and remade the bed, put her back in bed and drug myself back to bed to go back to sleep! After about 30 minutes of reading and checking Facebook I shut everything off and closed my eyes. About 30 seconds later Elise was back to grunting and awake. So, at 5:10 I crawled back out of bed and headed to Elise's room. I hopped in bed with her and tried to get her to settle back down to go to sleep. I continued this endeavor with relatively little success until about 6:00 a.m. At that point, I got out of bed to get her morning meds and water that she must have before she is able to eat breakfast. I discovered that she never got her Friday bedtime meds. This doesn't happen very often (like 3-4 times per year), but when it does we sure pay for it! As is usually the case, she fell asleep right after I gave her meds and I was finally able to go back to bed. At 6:30 I went back to sleep (this is Saturday and I can sleep in today right?) and was awoken by Abby at 7:30 a.m. She wanted to know if she could watch a movie and wanted to show me the new hair braiding technique she had just learned. Needless to say, I wasn't too interested and I sent her to wake up Kelly to help her out today. Abby was unsuccessful (and gave relatively little effort) at waking Kelly up. So, I got back out of bed, started a movie, poured Abby some cereal and milk, got Elise's food together and started her feeding pump and headed back to bed. Just as my rear hit the bed, the alarm on Elise's feeding pump went off and needed attention. I got back out of bed, restarted her pump and headed back to bed for some more sleep! Unfortunately, sleep never came back. Maybe it was the roughly 4 hours of getting in and out of bed, maybe it was Kelly asking "did you have to get up with Elise?", or maybe it was just that by body was "rested" after 4 hours of sleep. I guess I'll go with the latter. I certainly have to give a disclaimer that there have been MANY nights where Kelly has been out of bed with Elise and I slept through it all as well. It has certainly gone both ways, and actually on Sunday we did basically reverse roles. I guess that is how we make this work!
I finally gave up on trying to go back to sleep and got out of bed at 9:00 a.m. We were headed to KC for the weekend for a family birthday party and we set a goal on Friday night to get out of the house by 11:00 a.m. on Saturday morning. After getting up at 9:00 a.m. I was ready to make some breakfast and chug about a gallon of coffee! I had started the coffee maker during one of my earlier times out of bed and I went straight for the coffee maker after bed. While talking with Abby about what to make for breakfast Kelly decided we should make smoothies! Theoretically a great idea! Do you have any idea how much time it takes to cut stuff up for that if you are not prepared? I set out to cut up a pineapple, several mango's, and get together some other ingredients. Kelly gave Elise a bath and got her ready for the day. By the time the smoothies were prepared and the kitchen was cleaned back up, it was now 10:20 a.m.! I chugged my partial semi-warm smoothie, threw out my cold coffee (I never did have my coffee!), and hustled to start packing. Kelly got together the girls' clothes, I got the suitcase and all the stuff for the dog, and we packed all of our own clothes and personal items. Kelly ran to get a fast shower while I helped Abby get dressed for the day, comb hair, brush teeth, and find some toys for the car ride. I hopped in the shower for a speed wash at 10:50. So much for getting out of the house at 11:00 I guess. The rest of the preparations where uneventful and we actually got the kids, the car, the dog, and ourselves loaded and out of the house by 11:15! I sat in the car initially impressed at how quickly we had made everything happen in the end. Then I realized I had basically been going at it for 7 hours already and we STILL couldn't get out of the house on time!
Our ride to KC was one of the smoothest rides in a long time. No seizures on the car ride, which is very unusual, meant that we didn't have to stop for a puke bucket, a diaper change, or to clean up the car en route to our destination! We arrived at my in-laws house at just about 1:30 p.m. in time to drop off the dog and even have a little down time before needing to head out to Leavenworth for the birthday party. I managed to sneak in a quick 10 minute nap which was the highlight of my day! We had another uneventful car ride to Leavenworth and actually made it to the party about 10 minutes early. This is a record for us nowadays! We were glad to get there a few minutes early as that gave us all a couple of minutes to "Elise proof" the house a little more. Unless you live with Elise every day, there would be no real reason to have to do this to your house. Imagine what you have to do to "baby proof" your house to make it safe for a toddler. This is the same premise for Elise, but she is 7 years old. She is much taller than a toddler, stronger than a toddler and able to move and break more items, and she is prone to either having a seizure and falling or just stumbling and landing on items that are left out. It is standard practice for us to quickly go through several rooms trying to clear them like we are part of the SWAT team.
Elise and Abby were excited to see their cousin Keegan and went straight to his room to play. While Abby and Keegan began getting out toys and playing, Elise crawled up in his bed and laid down after being in the room about 10 seconds. So much for playing I guess! She was content to sit on the bed and mostly just watch the other kids play. We were just happy that she was able to stay safe and no unsuspecting little kids were cracked on the noggin by Elise's helmet! We all moved outside shortly after 3 p.m. for the party and it was a beautiful fall day here in Kansas.
I find that gatherings with other kids are frequently some of the most difficult things for me. It is a good time, but it is really hard to watch how active the other "neuro-typical" kids are, and see how delayed Elise is in all aspects of life. There is nothing that we can do about it, the other parents don't make me/us feel singled out, it is just difficult. There's really no other way to say it. Elise seemed to enjoy her time at the party and she even managed to stay awake the entire afternoon! The party was full of cookies, cake, balloons, water guns, capes and masks (it was a superhero themed party), and presents. A good time was had by all.
After the party we stayed behind to have dinner with Kelly's sister, the birthday boy, and Kelly's brother. While dinner was cooking Kelly asked a question about one of Elise's meds and we realized that it was the only med that we had left at home! Elise "had" to have that medicine. She only takes it at bedtime, did not get it on Friday due to our error, and needed to take it to be able to get sufficient sleep. A quick call to the pharmacy to solve that problem turned into a multi-hour endeavor that didn't solve anything. I learned from the pharmacy that Elise did not have any more refills left on that script. That meant we would have to call the doctor on call to get them to call in a refill order. I called the hospital and was connected to the "triage nurse" who takes down your information so that someone can call you back. After about 20 minutes, a nurse from the hospital calls to ask the exact same questions that I had already answered for the triage nurse. She told me that she would contact the doctor on call and have them call me. She ended the call by reminding me that if this is an emergency I should bring Elise into the ER immediately. Really???? Weren't we just talking? Does a prescription for sleep meds really sound like an emergency here? I assured her we would be fine and I would wait to hear from the doctor. Another 20 minutes later and the doctor called to ask the same questions that I had already answered for the previous 2 nurses. She determined that I was apparently not a raging lunatic and that we weren't trying to put 2 mL's of this drug out onto the street and she agreed to call it in to Walgreen's for us. One of the great things about Walgreen's is that you can generally get 24 hour access and can get the script filled anywhere. Well...........that's not always the case.
After dinner we loaded up our family and the birthday boy for an overnighter. We headed to the pharmacy, which was about 30 minutes out of our way. While driving Kelly had the great idea to see if there was a 24 hour place even closer to her parents house and there was another option that would save us about 15 minutes! We chose that option and went to get the script. Once there we learned that they were out. The tech called the other 24 hour store in the metro area to see if they could fill it for us and have it ready. After an extended wait she came back to tell us that they did not have the medicine either. All that maneuvering and in the end we still came up empty handed. We could have called the doc back and likely gotten it filled at Children's Mercy, but that would have been a couple of more hours at least and then we would have been pushing 11 p.m.! And besides that, the K-State football game was on and I was missing most of the first half! As it turned out, I should have gone to Children's anyways. The game was terrible, and a second night of sleeping without the med was not any better!
We finally got back to the in-laws house, got the kids dressed and ready for bed, and Elise's medicine given at 9:00 p.m. After a long day I fell into a chair and stared blankly at the game for the next hour and a half. I asked myself many times throughout the day, "is this day better or worse than usual?" In the end, I believe neither. It was a "normal" day for us. Somethings were a little better. Elise didn't have as many seizures, wasn't as sleepy, and the car rides were uneventful. Some things were a little worse. Elise hasn't been getting up, to stay, so early in the past several months. We have enjoyed getting to sleep more often until 5:30-6:00 each day.
So the next time we have that frazzled look when you see us at a function, party, meal, etc. just remember, I was out of bed for 7 hours and still couldn't get us out the door on time on this day. You never know how much someone has done before the sun even rises some days. I try not to think about it. That only makes me more tired.
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| Sometimes just looking at this crazy haired kid make me more tired! |
