Wednesday, October 20, 2010

#4 on it's way

The chaos of life seems to just be trading one thing for another right now. Once something seems to be on the upswing we have a new thing to deal with making me have to laugh at the ridiculous amount of crazy we have going on. I might just be laughing to keep from crying, but I'm laughing none the less.
We are still working on getting Abigail to enjoy her thickened liquids. Since her water has applesauce in it we call it juice. And although she has been drinking it, she still ask for water about ten times a day. And the milk transition has been horrible. We are on a new attempt after backing up and thickening a little at a time instead of all at once. Nap time got a few swallows and no tears so we are hoping this time it will work.
Beyond that she has had two darkened areas on her leg we have been keeping an eye on. One of them recently started to feel like it had a little knot under it so I called the neurologist. They suggested I take her to our family doctor to make sure it wasn't anything else. I put it off because even if it is a tumor, there isn't a whole lot they can do, and I didn't want to do another MRI yet. So yesterday Abigail told me she had a boo boo. I asked her where and she pointed to the spot with the knot under it and said hurt. So I decided to take her to the doctor. And now we have another MRI at the end of November. *Sigh*
Other than that our world has been filled with smaller ups and downs like a broken furnace that is now fixed and a friend who has struggled with addictions, and been clean for a while, was missing for a few days, but has called and all is fine. Our lives are never boring if nothing else.
On a much happier end of things we had a routine dentist visit today. Abigail has cried through her others, but has always still let them do what they needed to (just with big sad tears running down her cheeks). Today my two year old was a rock star. She got her pouty lip out a few times, but not one tear. I would have been proud of her even if she had cried, but the dentist and hygienist were very impressed at what a big girl she was. And to tell you the truth I was too.
There are times in my life where my biggest lessons have come from the tiny one God has entrusted to me. The days I feel overwhelmed with all of the appointments, poking, prodding, and driving; I can look down and see a toddler overjoyed to be playing with different toys, seeing the nesquick bunny when we drive by the factory, or getting to watch the television on the ceiling at the dentist office. I mean if the sweet little one who is receiving all of the pokes and prods from strangers can take it I should probably act a little more like my two year old. She makes our lives of chaos seem like a walk in the park.
The pictures below are from the night Jason decided he would swaddle Abigail to be silly. We haven't done this since she was about two or three months old. Now she ask to be swaddled and rocked at least once every evening. And who am I to say no to a request that allows me to hold on to my toddler being a baby for just a little longer. :)

Living the life,


  1. I'm so glad you found my blog! If you ever have any NF questions just ask. It's nice to have someone else to talk with who knows.

  2. I LOVE reading your blog!!! It's like a little slice of normalcy for me. It's tough being special needs and I think we all need that "see, other people are there too" to feel "normal" - thank you for that!!! I think I missed something, why is Abigail on thickened? Is she aspirating? I hope not. Annie does so she is only water but we have a tube so she gets milk through that. Thickening stinks - I hope that doesn't last long for you guys!! Please keep us posted about the MRI - sweet little Abigail, always in our prayers!!! HUGS!!