August 11, 2014

It's Part of the Plan

August 6th Addison's neurologist called.  In my life I have learned it is never good news when a doctor calls you.  And that day two neurologists called. 

As I have mentioned before, Addison has great difficulty sleeping since he began the steroids.  During the EEG he only dozed in and out for a minute or two at a time.  The lack of deep REM sleep means an inconclusive EEG.  We had been told the happy news Addison is not in Hypsarrythmia all the time as he was on July 15th.  However we could not confirm he was not reverting to Hyps when he is asleep. 

When our neurologist got the final reading he saw what was missing from Monday's preliminary report.  During the brief periods of sleep Addison shows a pattern which would develop into Hypsarrythmia if he went into full sleep.   Dr.  R said, "So we see improvement, but not an acceptable improvement."  

And unfortunately, because of issues with scheduling the EEG this information came too late.   Because of the problems with long term use of high doses of steroids, Addison had already begun weaning off the meds.  And that is sad news.  It means we do not know if the original meds and doses didn't work or if he is reverting because he has begun weaning.  And it means only 10 days from the end of this medication trial, we have to go back to the beginning.  And not just back to the beginning but to double the dose. 

That means our little 17 pound fellow is taking the maximum adult dose.  And that means greater side effects.  Greater concern for renal issues.  And double the trouble of how to help him swallow double the volume as before. 

On the topic of swallowing... in addition to his structural issues, and his hypotonia, the meds numb his mouth and have been known to make swallowing difficult for people without down syndrome or dysphagia.  Last Tuesday the inside of his mouth began to swell considerably.  It looks like he has the mumps, if you've ever seen the mumps.  Anyway, for a brief time it seemed as if he was having less trouble swallowing medicine.  But Saturday reached an all time low.  It took a solid hour to get 6.5 ML down him.  10 ML is 2 teaspoons.   
We asked the neurologist for an alternative that could be given as an injection.  This particular medication is not available in an injectable form.  And all the other meds vary slightly.  And the problem is no one would choose a shot over an oral med for their baby.  So no one has done any studies on how IS respond to those other meds.  And we know he has responded to this one.  So the neurologist strongly recommended we continue as is.

But I am still left with the dilemma...

I don't know how to help him if we can't even get the medicine in him.  I have spoken to every sort of doctor and therapist.  I have searched the internet for hours on end.  There doesn't seem to be anyone with any experience in this area.  Even the ENT just says, "I don't know how to help you." 

For the first time since July 15th I cried.  That's it.  I cried.  And cried some more.    

And in the meantime...

His rash is spreading and spots are opening.  In his weakened condition there is a possibility of developing a skin infection.  He is still eating only sporadically and is very constipated.  He has brief moments where he seems engaged and will take a little interest in a toy.  Last night he was locking on to my face and reaching up to touch my cheek.  However, most of the time he remains unresponsive. 

And quite frankly...

We still don't know if this will even work.  Or if it works if he will develop Lennox-Gastuat Syndrome.  Or Autism.  Or both.

We count our blessings from moment to moment. 

The biggest blessing right now is that from time to time he has had some periods of sleep.  I don't know what to attribute this to but I am grateful for it.  He has slept for several 2-3 hour periods over the last 3 days.  This alone is a huge answer to prayer. 

We follow the plan.

The plan for the next week.  We will continue at this double dose of prednisone until August 18th in an effort to fully eradicate Hypsarrythmia.  On August 18th we will begin weaning again.  The wean will be finished on September 7th.  August 15th we will go back to Children's Hospital in DC for another 4 hour EEG to see how the current meds are working.  On August 18th we will meet with the neurologist to make the next part of the plan.    

And most importantly we constantly remind ourselves and each other that God has a plan.  We don't know what the big picture is.  But we do see God working.  Before Addison was born we asked God to use his life to reach the world. Since he was admitted to the hospital friends have added Addison to their church's prayer list.  And the members of those churches have asked people in other churches to pray for a little guy in Maryland.  I truly have no idea how many people are praying for Addison today.  I have no way of knowing how many lives are being touched because of his circumstances.  I do know that I have received messages from people we know and love, acquaintances, people we barely know and people we have never met locally, across the United States and as far away as Canada and Europe.  I don't know how God will use that and it isn't quite the world.  But when I realized how many people are out there interceding for our guy it knocked me off my feet. 

All we can say is thank you. 

Since we first heard the words Infantile Seizures we clung to one specific promise.  God can heal Addison.  This is a certainty.  We can only make a plan for an hour, day or week at a time.  But God doesn't work that way.  Before He made Addison He had a plan.  Not for today or for tomorrow but for always and forever.  And this is part of it.

And he is ours.  And we couldn't love him more.  But God does. 

And if complete healing is not part of the plan on earth then I know one day we will all walk together with the Lord and at that time Addison will be completely healed.

For I reckon that the sufferings of this present time are not worthy to be compared with the glory which shall be revealed in us.  Romans 8:18

5 comments :

  1. I can't even imagine what you are going through... and little Addison too. Sam has had to take Prednisone for asthma and it's a strong drug! Still praying... thanks for the update.

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  2. Kat,
    Just wanted to let you know that prayers are being lifted from FL for your family!!
    Blessings and love!!

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  3. Still praying and asking friends to pray too.

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  4. You don't appreciate something so seemingly simple as swallowing until you see what it's like to not be able to swallow. But our guy can do this thing. It's awesome to see how God gave us just the right techniques at just the right time. Although, gotta say, I'm so ready to never see prednisone again.

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  5. In all you're going through, your last paragraph reveals what matters most; your faith in eternal healing. Our family is going through a difficult trial as well, but our belief in Romans 8:18 brings forth comfort and true JOY through the process. Praying for you all.

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