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The miracle of a medically fragile child

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Sunday, July 10, 2011

The miracle of a medically fragile child

Tomorrow we will make our way to the geneticist.  I'm preparing myself.  I know what our conversation is going to be like.  We haven't seen him in the last 6 months.  To be honest... seeing him is probably a waste of a day.  The facts are clear:  no one truly knows how the specific genetics of the 4th chromosome work.  For those who have children with smaller deletions will tell you the smaller the deletion, the less severe the syndrome.  Those parents who have children with large deletions, like ours - will tell you deletions don't matter.  The only genetic news I would love to hear is this:  Alexander can do anything.  But we are going.. and will continue to go until we feel it is really no longer useful.

First round of AM meds
Here is the low down on the last 6 months.  This spring, Alexander continued to have uncontrollable seizures.  He was transported by helicopter 4 or 5 times to Hershey.  He is now in the process of being weaned off his third medicine in an attempt to control these seizures.  At this current time, Alexander is completely doped up.  When you wean from one medicine to another, you have a week or two where the body is overloaded with both drugs:  you add the new drug before you begin to back the old drug off.  Alexander is on one his largest doses of seizure medicines ever during this week and next week.  So what will the geneticist see?

A 14 month old 10.5 lb baby that lacks head control.  (He had head control until he put on 6 oz in 2 weeks and his muscles haven't compensated for that weight gain.)  He will not roll around, tolerate tummy time, tolerate the Wingbo, tolerate sitting for long periods of time, tolerate standing in his stander for long periods of time, or tolerate extended periods of oral eating.  Because he is completely drugged up and exhausted.

What he won't see....

Alexander sitting almost unassisted.

Alexander taking assisted steps

Alexander enjoying his stander - he can be in it for hours.

Alexander enjoying eating - or eating macaroni and cheese.
Or Alexander talking

Because Alexander will probably be too tired to show off those tricks.

But what he should see is this. 

Life through the eyes of a child.... He should witness the miracle of a medically fragile child.

Let me show you some miracles.  Medically Fragile children who have had life threatening stays in the hospital, who have pushed through the sticks, needles, seizures, .... the unbelievable pain of constant tests and medicines to try to determine and control a medical problem.  I don't want to share their stories... if you are interested, you can follow some of the links and read about their own special road they travel.  I do want to praise the miracle of God as demonstrated in these children labeled as medically fragile.

Mia.  4 months ago Mia spent over a month in the hospital.  The prayers that went out for her were amazing. Because her life was indeed "fragile."  She fought.  She barely cried. She was courageous.  She showed and needed love.
HERE is a video put together by her parents....

Tanner.  5 months ago Tanner spent time in the hospital for severe dehydration - even though he was receiving his nutrition via g-tube.  His color spoke volumes to the doctor.  It happened overnight. ... because his life was indeed "fragile."  Tanner didn't cry.  He didn't fight.  He was courageous.  He showed love and needed love.  Look at that face.  I screams, "love me!"  "I can do this!"  And he can.
You can read about his journey HERE.

Kaylee. 3 months ago Kaylee spent time in the hospital while doctors raced to place an emergency g-tube in her for nutrition.  She was not receiving enough nutrition, the button wasn't placed correctly, and her "medically fragile" condition was again evident.  She didn't fight.  She was courageous.  She just needed love.  Her mom has a blog - but you need to contact her privately to read their journey.

Bria.  The beautiful baby who inspired this post.  She is Alexander's soul mate.  You would never know that she was running a fever in this photo.  Or that she has several seizures a day. Or that she is running a little "competition" with Alexander on who can have a seizure the longest.  For several months this spring, Bria was in the hospital more than she was out.  She doesn't cry.  Not even when they continue to stick to find a vein because most veins are too small or blown.  She doesn't fight. She is "medically fragile".... but she is strong. 

And Magnolia.  Alexander's Twin.  Just last month, my heart prayed for her healing.  One day, she just became ill.  One day.  She was fine and the next she wasn't.  Just like all of these "medically fragile" children.  This image haunts me....... It haunts me because it has been all of our children. Magnolia is a fighter.  She is so tough.  I'm thinking about my twisted ankle from yesterday - that I cried for over 10 minutes about.  Magnolia does not cry.  She fights.  She is a miracle from God.  Yes.... medially fragile children exist.  Yes, it is a journey of ups and downs that these children experience.  BUT they are miracles.  They are courageous.  They can tolerate pain that none of us can even begin to imagine. You can read more about her journey HERE

Finally, my baby.  Is it any wonder he is not always at his best game?  We go forward.  We go backwards.  We sit, and take a break.  We stand, and take a break.  We are constantly fiddling with his medicine - just to find the perfect cocktail.  And we will.  But Alexander doesn't cry.  He doesn't complain or whimper or .... even show real discomfort.  He takes it.  He shows me how to be courageous.  He shows me that a twisted ankle should not leave me sobbing for so long. 

How can you look at this picture and not see a miracle from God.  Just look at him. He is perfect.n  They all are.

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At July 11, 2011 at 7:38 AM , Blogger GingerGirl said...

Times like this, I am reminded how lucky Alexander is to have a mother that is so aware of things and is able to be his voice. To make sure that the doctors KNOW what they cannot SEE. Your documentation of this baby-steps are verification (as if a mother needed any) of the miracles that can slip by unnoticed. You should have the doctor look at this blog entry and SEE! Sometimes the "experts" are so blinded by what the text books tell them that they do not see the miracles before them. Will keep you all in my heart!

At July 11, 2011 at 7:16 PM , Anonymous marlene Aman said...

I am Tanner's Nona Thank You for this Special Post


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