Skip to main content
The past week was a pretty busy one. Lots to catch everyone up to speed about, but for right now, I just want sleep. So early to bed for a few nights, which means no computer time permitted. So a very short update for now. My baby sister had her first baby last week. Ivey had a little surgery on Friday. And, we had two very interesting encounters with other children while sitting waiting in a doctor's office and while waiting to go back for surgery. Both children really put a spin on our ordinary little Ivey. God works in funny ways sometimes.

Oh, and a my friend Heather had an interesting comment left for her on her daughter Zoey's blog that was a little rude. I have never really had any rude comments here, but I thought it was kind of humorous that someone wanted her to turn the music off of her blog. There is music on this blog too, but it made me wonder if any one really listens to it. All the songs here are ones that are special to me and my life with Ivey. They all have their own little meanings behind them. I hope they never bother any of you. Just know that most of these songs have been played over and over on my ipod in the hospital or in my kitchen dancing with her. We dance and sing them all. They are all Ivey's songs.

If you ever want to turn the sound off, just page down to the very bottom of this page and click the mute button on the butterfly.

Comments

Anonymous said…
It is really sad to me that someone wants the music turned off. I can only imagine how important music is to any child. It brightens their day, gives them energy and makes them smile. Just like Ivey's music on her website is a part of her life story, I'm sure Zoey's music is too. Let the rhythm of thier lives touch us all.
Heather said…
Yeah,the music comment.Strange to say the least.I wish I had a thicker skin sometimes and could let things roll off my back.No can do.As for you and yours.You and me must have the same exhaustion thing going on.I think mine has been lasting about 2 years.How about yours my friend?Can't wait to hear your updates on the goings on in your little corner.Until then,rest while you can.How restful is our rest actually?I have been asked on occasion if I sleep or if the events of Zoey's life and our life keep me up with worry or anxiety and you know I have to say God has blessed me in that department because when my head hits that pillow,I am out.Sometimes I can't even remember dreaming.Hope it is the same for you because I do not know what I would do if I suffered from insomnia as well.Nice topper that would be.Take care.Love to you all.

Popular posts from this blog

Teeth & A Port

Given that Ivey has a cleft palate that was pretty severe and extended far into her soft palate, even after repair, and years later, it has left her with some precarious cranial and teeth issues.  So here we are, back at Scottish Rite doing a little OR time to help alleviate some pain and address a few other odds and ends.  And after many years needing a port for immunoglobulin infusions, it has been officially removed.  Infusions have been replaced with Sub-Q infusions.  So away it goes.





The Animal Shelter

The final synopsis.  The dogs were loud.  She didn't even want to talk about the cats.  The snake.  That snake was her favorite.  



Does She Talk?

The thing about the term "nonverbal" - it isn't always accurate.  Technically, it's a terrible label.   I always get a little, how should I say this, perturbed when someone calls Ivey 'nonverbal'.  You see, this terminology leads others to assume Ivey can’t communicate.  Oh, she communicates.  Quite well I might add.   My question is it Ivey who is limited because she doesn't speak verbal sentences, or is it the rest of us who are limited because we only pay attention to words spoken verbally?  And, nonverbal always makes me think more along the lines of mute, but if you have hung out with Ivey for any short period of time, she is anything but mute.  Remember there was a time when I could apply the humivent on her trach as an on/off switch.  This came in handy in church.  Well, that was until she figured out how to use her finger to cover the hole... years since  decannulation it's been game on.  Literally.  

The nonverbal box tends to underestimate h…