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It Goes On...On...and On..

And it still sometimes seems like way too much. Today I brought Leo back in to the hospital for a consul with the neurology doc who specializes in seizures. Lets cover all the bases folks. What else can go wrong for these already severely compromised children? Most of them develop seizures they tell me. Some are severe and require medication, some are subtle and not a concern. Concerned? Who me?

Well I did call the VNA early this morning because I thought Leo's skull looked different. One of the signs of shunt failure is if all the saggy concave soft spots on his head suddenly start to fill back out. Last night when I was re-positioning his head I thought his soft spots looked fuller. Sure enough this morning the soft spot was almost level with the ridges of his plates. The visiting nurses were knocking on my door a mere forty-five minutes after I called them. Talk about a pair of totally awesome and dedicated ladies! Anyway they determined that it wasn't an immediate emergency but advised to have the neurosurgeon check it out. So back to the 'Hitch we went. The neurosurgeon decided to keep a eye on his head, but felt that probably it was just the fluid and the shunt starting to come into a working equilibrium. During the shunt surgery itself, Leo lost a lot of the fluid, so now that it has had time to build back up to a point where the shunt valve will start to drain it down into his peritoneum.
The doc mentioned having another MRI, just to see how things look inside Leo's head now, but kept stressing the fact that the chances of it proving another prognosis is very very slim. Sometimes I come out of those doctor appointments more confused and depressed then before I went in. It didn't help that the nurse checking me in didn't know diddly about Leo and said really dumb things that hurt. Like "How old is your baby? Four months old?" And then, "Wow look at his long fingers, I bet he will be a great piano player..." Come on, really? Didn't you even glance at his chart before you came out and called him in?? It's appalling how hurtful all that perfectly normal baby chit-chat is to me now. None of it applies to my son. He broke all the mundane formulas of waiting rooms and day-to-day social interactions. It's like a transparent but solid curtain separating me from all the other moms with their newborns. Instead I dread interactions with them, waiting for the inevitable explanation: No my son will never do those things. He was born without a brain...
Standing in the  crowded elevator, Leo's carseat a heavy weight on my arm, I try not to bring attention to us. Then I hear a little muffled voice beside me, "Is your sweet baby a boy or a girl?" Wincing I look around and see a painfully thin little girl, wearing a face mask, the dark circles under her eyes look almost painted on. She looks up at me, a smile visible behind the mask. Heart breaking I tell her he is my special baby boy. She is grateful and happy, rejoicing for a stranger's baby, her own illness forgotten and not important. Leo you have done it again. Every day he transforms my heart from the stone of self-pity back to living flesh that marvels at the wonder of this life. Thank you baby.

Comments

  1. Thank you too, guys! Approaching God, not the brain, but the heart has the best reasons... Love you lots!

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  2. We love you all so much Anna. I am weeping here after reading what you wrote. What miracles Leo is working for us all. God bless him and you.

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  3. Dear Anna and Justin,
    Thank you both for your recent posts. What beautiful expressions of how Leo is helping us, and especially you both, to feel the touch of God in our hearts and know what is real and meaningful in this world. Thank you so much for sharing the transforming joy of your son.

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  4. I would love to offer you any and all support I can. I am a nurse. We had a precious baby boy just like your Leo, our Tristan was born with the same condition, we took him in as a foster baby boy at 4 weeks and was told to love him for what time he had. WELLL... 9 months and 12 days we loved our "son" and he was such a gift. An amazing gift from God. We have 11 children total with #11 being our special baby. Your Leo is a blessing to MANY and you are chosen to be a very special momma and daddy to him. See my blog posts from Jan 2008 to October 2008. Feel free to e-mail me. http://wwwourchinagirl.blogspot.com

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  5. Dear Anna and Justin,
    From day one I have been following your blog.I usually read it at night so no one would see my tears.And the next day I fill in my family on all the Leo news.The children listen very attentively and then ask tons of questions.One day after praying for Leo my three year old Andrew said,"Mommy, tomorrow I will eat lots and lots of food so I could be strong and then I will share my strength with baby Leo."Dearest Leo, if only this would have been possible we would have gladly shared some of our health with you.But your path is different.By your fragile little life you simply glorify God.In your presence there is no past,no future,just the miracle of each prescious moment.
    Thank you Leo for showing us how to live.
    Thank you Anna and Justin for sharing Leo with all of us.
    May God give you courage and strenth to be the parents of such a pure angel.
    We love you and pray for you daily.

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  6. Justin and Anna,
    I have been keeping up with you from the beginning, I have kept the kids informed and we are praying for you, decisions, and attitudes. You both write so informative and eloquent, and sincere. Thank you for helping everyone else through this trial also.
    Love, Deb for the Christensens

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