Thursday, December 19, 2013

Riley's Update

Well I have to say that this road to oral and spoken language has been a crazy road for the past 5 months. I knew going into this that it would be a lot of work, however I did not plan for all bumps in the road. Who plans for bumps in the road? Nobody. At least not this girl.

Riley has had an infection in the left CI since a week after her surgery. We have been driving down to the hospital every other week to try to get this taken care of; unfortunately the time came where we had to take it out. Taking out a cochlear implant is not a common procedure, infact if they have to take out everything, including the electrodes then there isn't hope of putting it back in.

That's where mom started to freak out! I really wanted the device to come out before the infection took over everything, including the electrodes. Fortunately he was able to take out the top part and but it off deep enough to keep the electrodes in. That is all we could hope for. 6 months down the road she will get her left CI back in.

For right now we are jumping into therapy head on. Speech therapy once a week, developmental therapy once a week, and online therapy twice a month. This little girl is taking it like a champ; she is listening better that 2 and 3 year old I know. You see, there is a difference between hearing and listening. Some parents will assume there child is listening because they can hear. Hearing and listening go one on one but are two different things. She is actually LISTENING to the sounds, voices, movements and anything else she can. She looks to ever sound. I don't have to say her name twice, or three time, or even yell....she listening. This is something we are going to keep teaching her. Everytime she listens, we point to our ear and let her know....Yay good listening.

She bangs on pots and pans and laughs, she points to her nose when I say "nose", she opens books and starts jabbering like she is reading the book because she gets read to every single night. She said "uh oh" for the first time two days ago. This girl is really taken off, and with one ear.

We had a booth test done when we were at Riley to see where she was on the "speech banana" and how many decibles she is really hearing at.

The blue line is where Riley is hearing these days. She is at 25 decibels with her tones and 10 with speech. SHE KICKED SOME MAJOR BUTT at the testing!! This is a girl that was hooked up to IV and didn't each since midnight. Everyone was in awwww over this girl and her jump from last test. Her last test she was hearing at 32 speech and 52 decibel.

Testing a toddler is hard because they are on your lap playing with toys. Now what child wants to turn their head to each "beep" or "ba ba ba" that they hear when they have a cool toy in front of them. So testing at this age is not always 100% accurate but I am definitely going with this!

This little bump in the road i think has made our family stronger and more determined to work with Riley in every aspect of her development. I am learning so much about speech, motor and even gross motor skills than I ever thought I would, and I wouldn't change it for anything.

Riley is doing awesome! Thank you for all your calls, texts and more importantly, prayers. You are all loved!

Merry Christmas!

To elf or not to elf......

That is the question! Being it's Christmas and the holidays are next week I thought this was a great way to introduce this post. However my rant goes deeper than just Elf on the Shelf.

Being a parent is hard. You have to constantly make decisions that effect your child and your family. Everything you do or say: breastfeeding or not, daycare or stay at home, cloth diapers or pampers or even which if they watch tv or not. It doesn't stop there, oh no. With all those decisions on your mind, you have to constantly worry about being judged as a parent. Are you a good parent? What are other parents doing? Parents (especially moms) should all be in this together. There should be no judgement on how I am raising my kids vs. how you are raising your kids. You just never know what the family or child may be going through. I realized this we had our last stay at Riley Hospital; Every kid in there is sick and all of us parents are doing the best we can.

Christmas is a such a magical time for me and my family and we hope to pass that on to our kids. I have been reading so many negative thoughts, comments about how other people are raising their children that it makes me really sad. Don't worry about what someone else is doing. If a parent wants to use elf on the shelf to bribe their kids to behave, or do crazy different places where their children find him, then that's okay. That's their choice. Riley isn't old enough to understand the concept but when she does we will do it all season. I don't have time to do anything crazy, like take apart my xmas tree and make it seem like the elf did it, but if it makes her smile every morning to see her "elf" in a different spot and know that he is talking to santa then that makes me happy. It makes me happy that she believes.

That's what the spirit of christmas is to me and my family....believing in something so big that it fills up your heart. I don't think it's santa's job to make sure your kids are naughty or nice but if that is something you have to do to stay sane during this season then that's okay. I don't know what your day to day life is like and you may need that to teach your children. I won't judge you if you don't judge me.

I don't think you can "ruin" you kids or make them into brats because you get them gobs of gobs of presents. That comes from someplace deeper then the holiday season. One day isn't going to make your kid into a spoiled brat. We will teach our kids that giving isn't just enough, you have to give to someone or something that can't give back to you. The magic of Christmas is not about presents but about faith, about life, about love. I want them to know about the birth of Jesus and this day is because of him. Everything is because of him. If you don't, that's okay to me- I won't judge you if you don't judge me.

If you choose to not do santa in your house, or want you kids to make believe, that's okay. I want my kids to believe way past santa claus. Know that there is more to the spirit of christmas then santa claus, but if they believe then all things are possible. It's a magical time of year. I want it all: santa, elf on the shelf, trees, decorations, carols, traditions and family. If you dont that is OKAY with me- I won't judge you if you don't judge me.

Remember...we are all doing the best we can with what we have.

Merry Christmas