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Life with a boy and his Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum and two Super Sisters and one yummy baby brother.

Wednesday, April 23, 2014

Day 77

I meant to post yesterday of our count of waiting days. It would have been cool to post on days 25 and 50 and then 75. I just plain forgot. It seems to blur together. I thought having Alex listed would feel different. I don't know why I thought that. Maybe it doesn't feel different because we aren't waiting in a hospital. We are all home together. Alex still gets in trouble, he is still expected to take care of his responsibilities, he still must manage himself in a respectful way. He can still giggle and play with his sisters. He can enjoy school and friends. Alex is even involved with extra activities like baseball.  He is not letting it loom over his head and hold him back (I would like to). Maybe these feelings of mine will change. Right now staying the same is wonderful and dare I say, lucky???
Because.....
One of Alex's heart buddies was listed today. His road seems much more difficult than ours. We are hoping and praying for them. 


Yesterday morning I went to yoga. I am not very good at it. Try to imagine a rhino or a hippo trying to contort themselves into strange stretches. Add in that class starts at 5:30, my hair is just out of bed crazy. Every time I do 'down dog' I smell my own morning breath and don't remember my special breaths (that starts with a V) because I am now holding said breath, as not to die... I really should at least brush my teeth before I go. I am trying not judge myself, or compare my skills to my classmates. I giggle out loud because I try and diffuse my embarrassment. Teacher Pam knows my name. She encourages me, that is probably why I keep going back. If you need a great laugh visit yoga at 5:30 on Wednesdays.

Eden and May are such a duo. Eden asks a million questions all day long and May is busy discovering everything. May has been "unplugging" a ton lately... I might have to get sneaky on how to deal with this issue. Oxygen cords are a tricky yet, handy things. I haven't figured out the best way for her to play outside. It's hard to follow her around constantly. It's also hard to drag the long tube around. When we go outside I unplug then tuck her tube in her pants. I am starting to worry she is unplugged too long. We need figure out something. Not long ago I was reading about a robotics device that follows the O's user around with the tanks. It sounds fabulous!!! I wish we could have one. Medical ideas and advances are happening all the time. We are blessed to live in a time when we so much is happening. Maybe my children will bless the lives, or pioneer something for others. That is my hope! 

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