Calm Amongst the Chaos

Lily is finally on the road to good health. She was refusing to eat all weekend and was just weak and tired. But today she woke up happy, ate her breakfast and was excited to get on the bus.
Sunday I finally made arrangements for her to attend Sunday School at our new church in her age group. We started a new church last November since ours closed down, but we had Lily sit with us the entire service. I am always nervous about sending Lily into a new place with new strangers. I’m not big on strangers. I am also not big on Lily in hands that I do not know. It is funny we just send Andi in on her way and trust things are safe, but with Lily it isn’t so easy.
There are so many fears involved. Of course the major medical ones like a seizure. Or someone feeding her and she chokes. But it is the smaller things that I fear more. Will she just sit there all by herself? Will the kids whisper and giggle about her? Will her teacher be afraid of not knowing what to do with her and in return do nothing with her? Every parent wants their child to be accepted. To be happy. To feel safe. When you have a special child, those wants and fears are escalated.
I spoke with a woman on the phone prior to coming to church and she went above and beyond. She got Lily a helper who will be with Lily every week, who will make sure Lily is not in the corner. Will kids still stare, in the beginning I am sure they will, but with time Lily will be a member of their class and she will be what they know. She will bless them as much as they bless her.
Let me say when I picked her up from the class she was in a happy mood. She stayed in that mood the entire day! The teacher said she was happy the whole time. She was alert and enjoyed the class. I asked the teacher if she thinks it will work out weekly and she said, of course!
I feel relieved. As I am sure the rest of the congregation who has been listening to the high pitched singing of Lily in the middle of prayer! 🙂

Yesterday was therapy day and she is so funny. We start at hippo therapy at 7am. And that girl complains the entire time of grooming the horse, Ruby. She cries and cries and we always think, oh it will be one of those days, but no, then she just gets on Ruby and rides like a champ. All smiles. She looks so regal with her helmet and her proper posture. It is really pretty funny because Lily is so typical sometimes. She is just like all the other kids who don’t want to work before play. She is just used to getting out of things when she cries so she may whine a little more, but she doesn’t get out of it. And she won’t. Our little drama Queen. Always has been always will be.

3 week count down for the study to end! Yeah!

Lily hasn’t vomited since 9pm last night. I think we are over the worst of it. She still has a low fever so I kept her home from school, but I am pretty sure she will be able to make it to school tomorrow for their field trip to the zoo.
Lily is though, a turkey! I got some breakfast in her. Just a little, I didn’t want to overwhelm her, but I got some malt o meal in her and a yogurt smoothie. I knew she would have to pee and I still needed a urine sample from Tuesday’s study appointment. Today was the last day to get it in, so I sat with her on the potty for 30 minutes, nothing. Then I thought if she were comfortable laying down maybe she would go. So I sat for 2 hours with her on the floor naked. I had a pad under her and wouldn’t you know the minute she rolls onto her tummy she starts to pee. I flip her over fast, but it was too late. She peed on the absorbent mat. Now there was a dropper full size of pee on the plastic part of the mat and we poured it into the cup. I know it was hardly anything, but anything is better than nothing. But this is where I say she really is a turkey. After all that. I was pretty bummed considering I sat there for hours this morning and missed her pee, but then I put a diaper on her and she practically fills it within minutes of putting it on. See she is a turkey.
I sent Andrew on the 45 minutes drive to drop off the tiny bit of pee and to pick up her klonopin. I would be too embarrassed to show up with that little bit of pee.
Anyway, we got it in on time. Lily is on the mend and Mommy will get to go to Bunco tonight. Cheers!

So Lily about freaked the crap out of me this morning. I went into her room and saw stuff of her face. I first thought it was a hair, walk closer, “wait is that blood”, get up to her and see that she had vomit on her face, soaked in her hair, her pillow, all the while she is lying on her back. She is laying there with her eyes open, yet just staring. I talk to her and she moves a little bit. I wait for my heart to start beating correctly and then go run the bath. She takes a bath and it is obvious she is not feeling well. Her temps kept rising and she is very whiny. So not like Lily. Her temp usually runs at 97 degrees so for her to have a 100.3 temp, I know she is sick. I call the bus, I call the school. I call my mom and I call Lily’s nurse. Of course it has to be Wednesday, I absolutely have to work, I run payroll on Wednesdays. My mom says she can come til 1pm and the nurse said she can’t make it til 12:30pm. Thank God! That worked out.
I just called to check and my mom said, she is sick. Lily is NEVER sick. I hate this.
I might take her tomorrow to the Dr. if she still is sick. I will update.

We Love You!!!

So this morning has already started and started hard. I am drinking some coffee and blogging at 6:34am! I know I know. I needed a break from the day already. Wonder what else could possibly be in store for this not yet even started day.
I’m used to waking up at 5:45am every morning. It is one of those perks to living in one of the only states refusing to spring ahead. By 5:30am the sun is so bright, unless I develop an addiction to crack and have to foil my windows, I will continue to be awake at 5:45am every morning, which honestly, I don’t mind. What I do mind is the kids joining me.
I use this early morning time to drink coffee, watch the news, curl up under a blanket and have some me time before the day begins, but today was not one of those days.
Lily has woken up screaming the past two mornings in the early 5 o clock hour. It isn’t something new, she goes through periods of this daily and then goes months sleeping peacefully. Yesterday though I was able to change her positioning, she gets herself uncomfortable and is unable to correct it, then I put her blanket back over her and she went back to sleep until 6:30am. Not this morning though. She was just screaming and screaming. I changed her position, I covered her, she was quiet. I sneak out, she cries again. I leave her be for a few seconds, realize this won’t stop and bring her to the living room where she proceeds to cry and cry and cry. I give her a drink she drinks it, then cries and cries and cries. So then 10 before 6am in comes Andi crying her head off. She woke up way to early and in trying to comfort her Lily is just screaming. I put Andi on the couch with a blanket and milk and put on her show. Well apparently her show isn’t her show today and the child flips! She flips out! She wants to watch things that aren’t on. I tell her she can watch this or this and she wants something entirely different, not even on yet. She is screaming, I start screaming and Lily is crying. It was awful and I wish I would have handled it differently, but man, I was tired and so frustrated!
Anyway, Andi apologized. Lily just stopped crying, for no reason, just as her crying was for no reason, and I made my coffee and retreated to the computer for a little solitude. A little writing time.
Lily is off school today, but because I still have to work she will spend the day with her nurse. I’m sure they will have a nice day. Her nurse is so good to take her on daily walks and gets her outside, although it is already getting too hot.
Andi is going to school and I am going to work. We have a very busy weekend and I am tired thinking about it all.
Hope you all have a great weekend!