Saturday, March 29, 2014
I went into Liv's room to relieve the nurse this morning, only to find Liv sitting on the floor quietly. That struck me as odd for a minute and I moved passed it when she reached for me to pick her up. The nurse tells me that she had no fevers, no seizures, and slept well. The three things that I love to hear. But she was still quiet. I know she doesn't talk, but she babbles and loudly, at that.
She didn't let me out of her sight and wanted to sit with me the whole time. She didn't want to watch Mickey Mouse or Sesame Street. Again, I thought something was going on. Those are the only two shows that she will watch in the morning. This time, she wanted to watch It's Always Sunny in Philadelphia. Yes I'm aware that it's not an appropriate show for a little kid, but she likes it and doesn't understand it. I'm not really sure why she likes it but it's the only adult show she lets us watch.
She started falling asleep for her nap at 8:30 am. She usually doesn't fall asleep until 9. She just laid on me and I cuddled her. About 10 minutes later she started twitching. I thought she was having a dream or a sleep seizure. I look down and notice that it's a seizure with her eyes wide open. It lasted about 1 minute and then 2 more followed. I had to give her emergency meds today and it wasn't even 9 am. I was worried what would come of the rest of the day.
The Diastat is usually potent and wipes her out for a long time, but not today. She only napped for an hour and a half and woke up ready to go. She became extremely attached to daddy and wouldn't let him out of her sight. When he left for the bathroom, she screamed bloody murder.
After my migraine dissipated, I decided to go to the grocery store as planned. I offered to take Liv with me. I don't usually do that but I knew that if she didn't get out of the house, we would be in for it later. So off we went. I was so scared that I would be alone with her and need to give her emergency meds in the store. She didn't have seizures, if fact, she had a blast. I put her in the cart that has a car in the front. She loved it. She was still quiet but she did make herself at home by taking off her right shoe and sock. She beeped the horn at least 100 times before leaving the store.
Then it was dinner, bath, and bed. What started off to be a rough day, turned out to be ok.
Tuesday, December 31, 2013
My husband and I are feeling like we have to keep a lot of our decisions and information about Olivia to ourselves. We are constantly being judged by what we do. Not from people online, but people that we know. The funny thing is that we never put our suggestions on parents because it's not appropriate for parents to tell other parents how to do things with their child. I can't believe what some people say to us when they have no idea what it is like to raise a special needs child. I really appreciate the people that look to us as if we are knowledgeable and are making the best decisions for our family. I guess I don't know when I gave everyone a signal that I want to be ridiculed about the way I run my life and family. My husband and I have harsh decisions to make weekly, life changing decisions. No one is with us when that information is gathered and presented. So how is it that people feel they have an educated decision in our lives? Yes it's easy for everyone to say to just ignore the comments, but it's much easier said than done. Remember, these comments are coming from people we know. None of them have a special needs child or have any clue what it takes to raise one. I just wish people would keep their rude thoughts to themselves. Sorry for the rant but sometimes I have to let it out or I'll explode. This was brought on by a comment made today while I was resting in between my daughter's grand mal seizures and needing emergency meds. We are also hoping that we don't have to go to the hospital today. I wish people would just take a minute and think before they talk. I really didn't need the comment on what I should do with my daughter in the midst of chaos that's happening in the home. I could see if this was a one time occurrence, but many people feel that they should have a say in our lives and they have no idea what is even happening at the time that they are saying it. I need a vacation. Sorry if the pictures on Facebook and the updates have offended anyone, I won't be posted them anymore!
Friday, December 27, 2013
These past couple of days I have spent reflecting on how much Olivia never ceases to amaze me.
To My Little Girl:
I love how you stick out your tongue and make raspberries and then have to itch your face because it tickles you.
I love how you hold onto my ear like it's a security blanket.
I love how you smile at least 100 times a day.
I love how you forgive instantaneously.
I love how you rub my arm when you are sleepy.
I love how you still would rather nap in my arms.
I love how you laugh at things out of the ordinary.
I love how you show great amounts of determination each day.
I love how you make nurses at the hospital love you because you have such a great personality.
I love how you kiss me about 10 times a day.
I love how you could just spend the whole day sitting on the couch with me, watching tv of course.
I love how you have boundaries for yourself.
I love how everything is so exciting and new and fun in your eyes.
I love how proud you get for yourself when you learn something new.
I love how you want to include everyone in the room.
I love how you think I'm the greatest thing (because I think that of you too).
I love how you want to snuggle all of the time.
I love how you show fear for only one thing (going down steps).
I love when you want every one's attention that you just start talking really loudly and flaring your arms around so we have to notice you.
I love how you show appreciation.
I love how you are so strong and brave.
I love that you know you can depend on me.
I love how you are curious.
I love your laugh.
I love that you have learned to say mama.
I love how every day is a new day with you.
I love how you don't judge.
I love how you are such a bed hog that you take up the whole thing, even though you are so tiny.
I love how you are up for anything.
I love how you lean on me so that your face is on mine to get skin to skin contact.
I love how you are particular (even though it can be challenging at times).
I will keep watching you and to remember to always look for those little things that I appreciate so much.
Sunday, December 22, 2013
A couple of weeks ago, we started Olivia on growth hormones. It was a tough decision to make because you have to think if it's really going to be worth it. One of her diagnosis causes short stature and they said she will grow to be 4'6". This means that she will really struggle getting into cabinets and other every day tasks. We know that it posses a problem with driving, but I believe that won't happen anyways due to her epilepsy and lack of intelligence. So we have to give our baby a shot every night. It was hard to think we would have to do this every night for two years. We are now a couple weeks into the process and have realized that it's not bad. We actually do it while she is sleeping. She doesn't even wake up from it. That definitely makes it easier on us. Her appetite has picked up slightly since starting it. I hope it picks up even more. She will still not reach 5' with the hormones, but at least she will grow more than without them. I'm hoping we still feel this way 6 months from now. I'm also worried that she's going to need a whole new wardrobe in 6 months even though her clothes are about 2 months old. They said that we should see progress in 4 months. I'll touch base then and let you know how it's going.
Sunday, December 8, 2013
I see all of the post about Christmas that people are doing with their kids. I must say it doesn't get easier as time passes. I'm not decorating my house this year because Olivia will destroy it or get hurt. She has no concept of Christmas or Santa or the holiday or anything. We are getting her a couple of gifts. She doesn't understand gifts. She doesn't even care to open them. It's just like any other day. I will say that I'm glad she wouldn't care about the Elf on the Shelf because that's just weird and I wouldn't do it. I took her out in the snow and she had no interest. Doesn't want to sit in it, touch it, or be outside for more than 4 minutes. So here's to the next couple of weeks being just like every other time of the year!