Thursday, 5 June 2014

Grumpy Day


Oakley's had a very tired and grumpy day today, his moods seem to match the weather today. We woke up at 7am and had our daily medicines, he's definitely getting used to them now, and is basically sucking on the syringe, don't know if that's a good thing or not, but I'm just glad he's now swallowing the medicine, before he would just collect them in his mouth and hold them there, refusing to swallow, and when you pick him up all you get is a waterfall of medicine drooling down the sides of his mouth. So after our 7am wake up we played a bit on the bed, but he was still tired, so I tried seeing if he would sleep some more, and he did he slept from 9am-11am. I think the past 2 days of not getting much sleep has taken a toll on him, that and the ACTH has kicked in. Poor kid, and we go back for the last injection tomorrow. 

After his 2 hour nap this morning, he woke up a bit happier and hungry. So time for Mom to make some cereal, after which he still ate some apple puree. Very hungry boy. Tummy is full and then he was happy to play. Petal came home from school, and she immediately got a big smile from her brother, it's amazing how close they are, he's besotted with his big sister, and she's just as besotted over her little brother. Love it. Petal said to me today she is so lucky, so I said why, so she said because she has the best brother in the world. (Mommy's heart melts moment) <3 I definitely have 2 great kids. 

By 13:30pm Oakley was starting to get restless and grumpy again, so I lay him down on the bed, fed him and he drifted off to sleep for an hour. Definitely think his lack of sleep these past 2 days have just knocked him out. 

After his short nap he woke up smiling and ready for some more fun. So his very clever Mommy thought of a very clever idea. Since we don't have a playpen, and since we aren't allowed on the floor (germs and all) till his little immune system is back up again, Mommy set up a tent, hahahaha, yes I said a tent. With much effort I must say took Petal and me 15 min to just put the stick things into the holes, definitely need the Dad around for these moments, but we did it. Petal was so excited, she said she's going to get Oakley's toys for him. So I lay down to duvets for comfy-ness and pillows just in case Oakley decided to do a humpty dumpty move (which he does), and we put him inside with all the toys and his face was priceless, it was like ''are you serious'' kind of face, but after a few minutes he was happily playing with his toys, and his sister was in there with him having just as much fun. 





Although the fun didn't last long as his moodiness got the best of him. So back in Moms arms as we go, best place to be apparently. 

Come 5pm both kids in the bath, Petal helping Oakley catch all the toys that float past him, being a good big sister. Supper time by 6pm, he loves eating so much lately, mouth open wide, and the moment food goes in it's that cute little ''nom-nom'' sound...and then grabbing the spoon for more. :) 

                                                                      My Monsters <3


Medicines again at 18:40pm with the help of my little nurse Petal organizing which medicines he must have first. Then it's time for our bed time routine, a big goodnight to the big sister, and to the dad, and then we lay down and lately he'll lie next to me, drink and look for my hand to hold it and then go to sleep. It's just lately that he won't go to sleep if he's not holding my hand. His little way of saying I love you Mom. Precious boy. Fast asleep at 19:30pm, crossing fingers it lasts longer than an hour. 

Last injection tomorrow...eeeekkkk!!! I really hope and pray with all my heart that we've seen the end of IS, and no more ACTH and eventually no more medicines, and my little boy can lead a normal life, the way every little boy should. It's not normal for parents to know what ACTH is, or Epilem, or Keppra, let alone EEG's, Opthamologists and Hyppsorithmia are and all the other doctor and neurologist talk. Sigh! But then again, at least we were always one step a head of these doctors, and we understood what they were talking about, and we did blow their minds a bit with all we knew. So we were at least on the same page. Nothing wrong with that. Thanks to my very clever techno geek of a husband. <3 

So despite being tired and grumpy today, he's had a good day. Another day seizure free, which is a good thing. I do notice that when he is grumpy and quiet, Jason and myself are on the edge of our seats, as we usually would anticipate a seizure about to happen, it's just crazy to feel this way with every little thing he does, and how we just know, 2 months of it happening every day I think it just ''normal'' to us, so having no seizures is not ''normal'' to us...... but the more days with no seizures...normal will be normal again, and we need some normal in our lives. 






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