Thursday, October 28, 2010

Aubrey is a Miracle

A Message from Aubrey's Dad

Aubrey at the beginning
"Yes, and I will continue to rejoice, for I know that through your prayers and the help of the Spirit of Jesus Christ this will turn out for my deliverance, as it is my eager expectation and hope that I will not be at all ashamed, but that with full courage now, as always, Christ will be honored in my body, whether by life or by death." Phillipians 1:18-20

I know it has been a while since the last update, and I know that all of you have continued to keep Aubrey and our family in your thoughts and prayers.  We are sincerely grateful that you have continued to stand with us.

At this point, I feel confident in saying that Aubrey's recovery has been a miracle. She spent 11 days in the ICU and another nine days on the pediatrics ward.  There were times we thought she might die.  We had no idea what the future would hold for her if she survived.  The nights were long, lonely, and stressful.

But she woke up, had no further seizures, and improved so rapidly that within a period of two to three days, we went from considering surgical placement of a feeding tube and a month long stay in a rehab hospital to realizing that we could probably take her straight home.  She has been home now for almost three weeks, and the progress has continued to be remarkable.
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Miracles by leaps and bounds

Aubrey only required the NG feeding tube for five days before we were able to remove it.  At her first follow-up with pediatrics, she had already gained one pound of the four pounds she lost in the hospital.  Her eating and drinking continued to improve on a daily basis, and I am happy to report that she has now completely regained the weight she lost in the hospital. 

Quick improvements
She has had one visit with physical therapy, occupational therapy, and speech therapy and they were anticipating that she might need outpatient therapy once every two to three weeks until the end of November.  She goes back to the therapists tomorrow, and I fully anticipate that she will not need anymore outpatient therapy at all.

[UPDATE (the following day): Aubrey just returned from three hours of therapy.  She has gained six months of gross motor skills in the last ten days.  Her fine motor skills are testing at the three-year-old level.  There is no need for further therapy as she is functioning at or above her age level.] 

Her motor skills have continued to improve to the point that she is climbing up playground equipment and chasing her sister down the sidewalk.  Her speech and vocabulary are no different than before.  I think she still has some subtle deficits in her fine motor skills but anticipate that these will continue to improve.  Her swallowing has completely normalized and we were able to stop thickening her liquids.

She had a follow-up with neurology a week ago, and they were quite pleased with her progress.  Her doctor said that the major question marks had been crossed off the list.  When I asked him to clarify, he said that when she was in the midst of this, there was question of how neurologically compromised she would eventually be.  She could have struggled like a child with severe cerebral palsy.  She could have continued to have seizures as they weaned the medications.  But instead, she only continued improving.  Aubrey is a miracle.
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The Doctors are Amazed

More improvement
Several statements from her physicians have been notable to me.  Her ICU physician told the pediatrics residents that because of all the horrible, devastating things they see happen to children in their careers, Aubrey is someone to remember, because cases like hers are what keeps you going as a pediatrician.

One of the infectious disease physicians said that she has made "a miraculous recovery."  Her attending physician on the pediatrics ward told me that he had a feeling that she would get better, but that he had no idea it would happen this quickly. 
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Believing for Continued Healing

There are three issues we continue to deal with.  First, there is still a question of some minor neuro-developmental delays, but it will take some time for us to determine if that is the case.  I anticipate that there will be little to no neuro-developmental delays based on her progress so far.  They said she has between a 5-10% lifetime risk of developing a seizure disorder because of the severity of her infection and seizures.  She will need to remain on the anti-seizure medication for at least six months to a year.  We hope that eventually she will be able to discontinue the medication and that she will remain seizure-free.

Aubrey's goes home
Second, Aubrey is extremely emotional, and we are dealing with a number of behavioral issues.  It has become quite clear that the emotions and behavior are not different from what we dealt with before.  They are simply far more intense.  Aubrey is a very good girl, but she was by far our most difficult child, and her behavior is truly testing our patience.  We are unsure how to handle it, because it could be caused by several factors: behavioral/emotional problems are common in children after encephalitis, they can also be caused by the anti-seizure medication, she is recovering from a long, traumatic hospitalization, and she is still two-years-old.

Last, we are somewhat concerned about her vision.  At times she looks a little cross-eyed and we have noticed some things that may indicate her vision has been affected.  The infection was located in an area of the brain that controls vision.  She has an appointment with an eye doctor at the end of November to help sort this out.  Even if her vision has been affected, it is very minor as she is functioning almost normally.
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A Word of Thanks

Aubrey today - a miracle
My job has been incredibly supportive in allowing me the time I needed to be with my family, and I will be going back to work soon.  My fellow residents have offered numerous times to bring meals, help with childcare, or to do anything we need.  Our church and family have been an enormous support.  When this started, I truly felt that the doors of our church had been kicked open, and people were running to our rescue.  We are so grateful.  And the enormous prayer support we have received from all over the world will never be forgotten.  Thank you for praying and for sending your comments and emails.

This may be the last update for quite a while.  We are so thankful that we have our Aubrey back.  In fact, I am thrilled to even write that sentence.  Everything about her is back: her personality, her loving attitude toward her younger brother, her playfulness, her relationship with her older sister, being a "daddy's girl," her disarming sweetness, and her intensity and passion.

We do not know how long the behavior and emotions will remain an issue but trust that God will guide us in how to handle it.  After all, he rescued our daughter from the jaws of death.  We continue to trust Him and thank you for standing with us through this time.

10 comments:

  1. Praise the Lord. If she is on Keppra, this can definitely trigger behavioral issues. B6 is great to add to the mix to help with these. If you are unable to reach me through this post, Becca Good could connect us...we are praising the Lord!!!!

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  2. So thankful for such wonderful news! Thank you for sharing so candidly and being an honest example of faith in action. Your family is precious.

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  3. I love it! God is just so great! Always greater than we could ask, think or expect! I am in awe! Totally in awe! Such joy this brings....true JOY. And may God be magnified in this miracle.
    Barbara Smith

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  4. Your faith and this story have been amazing to witness. I am glad to be part of a body of believers praying for your little one. Thank you for the updates. We are comtinuing to pray for her and your family.

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  5. I'm just in awe of what has transpired here. If there were any doubts about believing, "believing for Aubrey" knocked them out of the park.

    When I found out this happened, I knew you were going to be fortunate in this crisis, Andy, because I've always thought you to be a really great person and human being, and I'm sure your beautiful wife and all three children are a reflection of your goodness as well.

    I hope my thoughts and prayers have helped along with everyone else's and will continue to keep Aubrey in those thoughts and prayers.

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  6. We were so happy to read this update Andy, and thankful that Aubrey is doing so much better!! We will continue to keep her and your entire family in our thoughts and prayers.
    <3
    Rena and George

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  7. Praise God, this has been an amazing journey to follow and we are so happy for your family and that everything has worked out so wonderfully. All the best in the months to come in the areas your still working with. God bless you all. From Shana, Melbourne, Australia

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  8. Praise God, for he is good and his mercies endure forever.

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