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We finally returned home after 9 days in the hospital. Lily can now get some real sleep so her body can heal. She will remain on antibiotics for the infection and we will continue to find a balance of medicine to control her worsened spasticity without keeping her “snowed” or knocking her out. Life is different without the pump. She has more voluntary and involuntary movement but she also has pain along with her constant muscle contractions. And along with these comes higher blood pressure and heart rate; two things that can cause issues for Lily if they get out of control. We will be keeping a close eye on her especially while we figure out our new regimen. If we aren’t able to effectively manage her spasticity we may consider putting in another pump in the next couple months. (Sigh.)

We will continue to take one day at a time and see where this journey takes us.

Please pray that we are able to control her spasticity discomfort and that her increased tone will only benefit her in her therapies.

God Bless,
Leslie

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asleep under the glow of Lily’s fishtank

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Comments

  1. We send you a big big kiss Lily.
    Keep strong sweet girl!

  2. Sandi Knaup says:

    Lily looks so angelic and peaceful in this picture. Sweet dreams little girl . Hoping that the right med dose is realized soon and she is back on the road to recovery. Prayers continue.

  3. Love you sweet Lil.

    Praying for your peace and recovery <3

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