Ashley's Story

She will leave fingerprints all over your heart

5/08/2007

My Messy Mozart

What a morning! My sweet Ashely's toy of choice today(by the way we are so thankful she is interested in playing) is a little tykes piano. She has very specific rules she wants us all to follow while she proceeds to bang and play on the keys. Sitting up on her own is not one of them. She wants to be held at just the right angle in the rocking chair while she plays. Holding the piano is not her job, it is one of ours. She must be rocked as she plays, as you hold her, and as you hold onto her piano. If you are not rocking fast enough then she proceeds to bang her head into your chest and rock herself so that you know she would like you to do a little better job. All of this is quite amusing except for the fact that she is still nauseated and happens to be vomiting with all the movement. So while you juggle our Ashley, her piano, and rock, you must also be ready to dodge her offerings that seem to be coming faster than you can pick up a towel to shield yourself. I must tell you that the music she is making is beautiful as is the smile on her face that is so wide you can see that mouth full of teeth she usually tries to hide. Grandma is the one doing most of the work. She wanted to rock Ash to sleep for her morning nap, but she got a little more than she bargained for. I would be happy to take over for her except that I can tell she is enjoying the concert and her front row seat by the smile that I see on her face. So I am folding laundry and laughing from across the room.

Ash had a really good night! She went to sleep at a decent hour and slept the whole night. She didn't wake until 7:00 this morning. She is well rested and has been awake and causing trouble all morning. I have finally given up on keeping her dressed and she now sits in a diaper and t-shirt because of all of the "offerings" her tummy is making this morning. She is past the point of needing that morning nap, but gives us no indication that she plans on taking it. I can hear her fussing in the other room so I am hopeful that she will soon just give up and go to sleep. I may have to take her for a walk around the house in her stroller to wear her out.

I haven't heard any news from Omaha, so I continue to anticipate the decision of the neurology board at Children's in Dallas tomorrow. I think if I could just get someone to agree to do CT and MRI of her head then we would know if there was an indication to have another spinal tap done. Ashley's labs looked pretty good and her white count has not dropped yet. I expect it to happen in the next couple of days. As soon as I know what direction our next steps will be in I will let you all know. In the meantime I continue to pray that her cancer might be gone and not anywhere near that precious CNS. Your prayers and support are so appreciated. I hope to get a few pictures posted today or tomorrow so you all can see how much our baby gherkin has grown. Take care and enjoy your day. God Bless you. Trish

5 Comments:

At 1:47 PM , Anonymous Anonymous said...

Praying for you all! (And eagerly awaiting new photos as well :)

God bless this afternoon.

 
At 2:06 PM , Anonymous Anonymous said...

Will pray and continually check the posts to see how sweet Trish and Ashley are doing. Much hugs, prayers, and love to you. Sunshine

 
At 2:29 PM , Blogger Susan said...

Trish,

Still praying! I have been checking in but have not had much time to hang out and "chat". Glad that Ashley is her sweet and entertaining self still. I will check back soon. Love and hugs!

 
At 7:56 PM , Blogger Sarah's In the Midst of It said...

Always praying for your precious one!!

 
At 10:49 PM , Anonymous Anonymous said...

loved Daddy's girl post. Beautiful! I am thinking and praying for you during this hard time of waiting....Colleen

 

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