August 30, 2014

Quilting in Paisley

There is a very special little girl far, far away.  She has a some very special people waiting for her to come and be part of their family.  They are preparing to make the long journey to give her the one thing every child needs.  While their suitcases will be overflowing with clothes, supplies and gifts, the greatest thing they will take with them is love.  This precious girl is very sick and before she ever sees her new home she will go to CNMC where she will spend a long time receiving medical care unavailable to her now.  Medical care which will give her a chance at life she would not have otherwise. 
I wanted to give her something special to help her be comforted during all these transitions and trials.  My kids love the quilts I made them.  When Addison was born everything was so unsure and so confusing.  Allen had gone home to check on the other children at one point.  I felt so alone and confused and unsure.  As I was trying to think of what to make for this precious baby I remembered the wonderful comfort when I cuddled with Addison under his quilt.  During the very long night we were in the hospital last month the only thing I wanted was Addison's quilt.  It was so cold and it was scary and as he laid on the bed I just wanted to tuck that warmth and comfort around him. 
It seemed like the perfect gift.  But really I didn't see anyway I could do it before they travel in September.  I do almost all my quilting by hand.  And it normally takes me about 9 months to finish a quilt.  But still I mentioned it to the girls.  And they said you have to do it.  You could do it. I pointed out I don't have time to shower many days right now.  And it would be really stressful trying to get it done in time.   We tossed around the idea if we did the stitching and quilting by machine maybe I could finish it in time.  But not really.
But God really wanted this to happen. 
Just to prove we couldn't do it, I sketched out a design.  Everyone loved it.  It could seriously take me months to find the fabrics I get in my mind.  And I couldn't be hanging out in fabric stores and risk picking up something that could make Addison sick.  Just out of curiosity, I did a search.  And within 10 minutes I had found exactly what I was looking for online.  Time was important so I knew shipping wasn't going to be a possibility.  When we called Joann's to see if they had what I was looking at online they said no.  Which seals the deal right?  Except, Allen was traveling that day.  And it just so happens he was passing by a store that had exactly what we needed.  We explained our situation.  They gathered up the materials we needed and cut the fabrics so Allen just needed to stop and pick it up.  Within hours of concept we were cutting out the applique. 
Even Carmella and Elisabeth helped by pulling stitches through
Enter the troops.  I typically do all my quilting by myself.  For one thing, my girls have never been into it.  For another this is my outlet.  My artwork. And I am not usually in a hurry. It's just something that occupies my hands and keeps my joints limber during the winter months.  I told the girls we would all have to work on this if it was to be finished on time.  
And just in case, God sent reinforcements. 
Way back at the start of summer our friend Julianne had booked a trip to spend a few days visiting with us.  We debated cancelling but in the end we knew it would be worth the risk for moral.  We were really looking forward to seeing our friend but kind of bummed we weren't going to be able to do any of the things we had been looking forward to all summer.  It was pouring down rain which is not even good for hanging out by the pool. 
But it is perfect for a quilting bee. 
Taking turns quilting and cooking dinner.
Even though we said we would attach the binding on the machine we decided to do it by hand.  We ended up spending the better part of several days gathered around the quilt.  Even in the van on the way to and from the airport. 
It was simply divine.  All we really wanted to do was talk anyway.  As always God knew just what we needed.  We set out to do something for someone else but it we were the ones who received the blessing.  It was awesome to feel like we were doing something useful.  It was awesome to think outside of our own trials.  It was awesome to work on something creative.  And all the chit chat was very therapeutic.  I seriously couldn't think of when we've had such a great weekend. 
I couldn't do it.  But God made it happen.  I had planned on delivering the quilt when we went to CNMC on September 4th for Addison's MRI.  We lost a week when his test was moved up to August 28th.  And still it was finished.
Ta Da!
We chose this fabric to reflect her name, Paisley.   
And added heart appliques because it is her very special, very sick heart which brought her to a forever family.
And then we added embroidery and applique to show the journey she will take from the Hunan province of China to her family here in Maryland.
 We ended with a satin binding because Carmella loves the satin on her lovey. 

Oh, and in the end, we couldn't resist.  We had to hand quilt the paisleys.  Unless you are a quilter you probably wouldn't notice the quilting.  But this is my very favorite part.  As I started each new one I prayed for a specific need for Paisley and her family.  I like to think there are prayers quilted in each stitch.

You can meet this special girl and learn more about her journey at The Crafty Nester.  Please pray for Paisley. For the family waiting for her. For the family who had to part with her. For those who have cared for her in China. And for those who will be tending to all her medical needs here.   I am so grateful to Josh and Joanna and the example they set by following God's will with total faith to carry out his command to love the orphans, care for the sick and give shelter to the homeless.

How has God called you to step out of your comfort zone to carry out His will, to show His love to the world or share the scriptures with the lost?

August 28, 2014

Therapy, MRI and Surgery

On Sunday or Monday as I was reviewing the upcoming week I boldly made the statement it would be a quiet week and our first week in a very long time when we didn't need to visit Children's Hospital.  You might think by now I would have actually learned my lesson to not say anything out loud.  But, not really. 

Tuesday Addison actually had a comparatively good visit with Miss Trudy.  I say comparatively because it was the first time since July when he actually did anything which resembled therapy.  He has been increasingly weaker every week since he began prednisone and in the last few weeks has been pretty much a rag doll unable to support his own weight even to sit most of the time.  We discussed whether it would be helpful to try his spio, which is kind of like a girdle to help him with muscle support.  We have not been using the spio since he went to the hospital because it seemed like too much for him.  Trudy taped his spine with Kenisio tape to give him some support and awareness. The difference in his posture and strength was very impressive.  He was rather alert and responsive for the better part of an hour while she was here and if my memory serves me correctly, he didn't even cry.

Since July 14th Addison's neurologists have been ordering an MRI to rule out any issues within the brain which could be causing seizures.  They are looking specifically for signs of brain injury, stroke, lesions, or tumors.  Three times they sent the order to the scheduling department and three times it got lost in the shuffle.  If you have had any experience with CNMC this just does not happen.  The place truly runs like the most efficient well oiled machine I have ever encountered.  Which makes it curious why the Lord kept holding it off. 

On August 18th when we saw the neurologist he had his nurse look into it.  She was sure it must be our insurance company holding it up. But when she spoke to our insurance company they confirmed they had already approved the procedure and the sedation.  Hmmm.

The next day the procedure was scheduled for September 4th at the outpatient clinic closer to our home.

Tuesday afternoon I got a call from the hospital.  There was some flooding at the facility and they had to move us to the main hospital in DC.  We figured since they were combining two facilities it would be weeks or even another month before we could get the MRI but in fact we were told to bring him on Thursday. 

This actually upset the girls a lot.  Emma, in particular, felt that if we couldn't get on the schedule for so long and now we got on in two days it must be bad news.  And to be honest it took me a few minutes to argue that logic.  But the fact is, God works in many ways and the verdict is still out as to whether this is a step forward or a set back. 

So we changed gears.  Allen rearranged his travel schedule and we prepared to go to DC.  And then things got really chaotic.   

Because Addison had to be sedated for the procedure, his MRI was treated as a surgical procedure.  When we were doing his pre-op work it came out that the tube they implanted in his left ear is metal.  You might remember his left ear is so tiny the surgeon had to use a special tube instead of the standard plastic model.  The problem is the magnetic field used in an MRI can rip metal from the body. 

Wednesday was a day full of phone calls, emails and texts as everyone tried to determine if he could even have the procedure done.  This seriously brought about a lot of uncertainties about whether or not this was God's way of saying we shouldn't have the test.  A call to the ENT determined what tube was used.  That tube was not on the MRI approved implants.  So then it was a call to the manufacturer to find out what was in the implant.  Once we knew it was all stainless steel and the MRI team knew it was safe for the procedure they had to go through the process of having it added to the approved implant list.  Finally, at close of business last night we had clearance. 

So traffic was horrible today.  We left our house at 8:00 and ended up being a few minutes late for our 10:00 appointment.  Fortunately, they had built an extra hour in the schedule to allow for pre-op paper work and IV's and all that jazz.

One big blessing was Addison's IV.  He has such painfully weak veins.  I have seen techs and nurses work on him for up to 90 minutes to get a line in or draw blood.  On his last visit to have labs drawn they said they could not do it.  I was concerned about whether or not this would be an issue.  When the pre-op nurse asked about his veins she said be prepared he will have multiple sticks.  I asked God to help them get the line in quickly.  One of the first things she told us when we went back to him was that the anesthesiologist decided to do the IV himself and he got it in on the first try!  Huge answer to prayer.  I only wish I had his lab slip with me so they could have drawn his tests at the same time. 

As far as the procedure itself, Addison did great.  He was under just about 90 minutes.  He needed a little bit of oxygen but not a big deal.  Unfortunately, our head neurologist was not in today so we could not get the reading.  We were trying to coordinate with another neurologist we work closely with but she didn't get out of ICU until late tonight.  It would be nice to get results tomorrow.  With the holiday weekend I am guessing it will most likely be at least Tuesday.

And then there is surgery.

While I was contacting the ENT in DC to find out about the tube, I got a call from Addison's surgeon in Connecticut. 

Since Addison was born, we have been struggling to find the source of his swallowing issues.  And I know I keep promising a post with real information.  And I will... someday.  Because it is important.  And I believe it could be helpful to others out there.  But it is too involved a topic for this post.  The bottom line is that in June we finally got a diagnosis of a severe posterior tongue tie and a moderate lip tie. 

Unfortunately, we had to go all the way to Connecticut to find this answer.  This is a very simple office procedure on a new born but requires full sedation in an OR for someone Addison's age.  And there are very few doctors who can perform the exact procedure Addison needs.  The nearest one is in Connecticut.  Fortunately, God led us to him and he is considered to be exceptional.  He arranged to meet us in between surgeries so we did not have to make another trip to Connecticut for a consult.  He immediately scheduled Addison for his first available opening which was exactly one month from our consultation in June.  Unfortunately, that surgery was scheduled for exactly 3 days after Addison was hospitalized and his neurologists felt it would be unsafe to undergo surgery.  We had to cancel the procedure. 

When Addison initially began weaning from the meds in July his neurologist said he would clear Addison for surgery as soon as he was off the medications and he would defer to the surgeon and anesthesiologist as to when it would be safe to have the procedure after that.  In the meantime, this issue has made it extremely difficult for Addison to get his necessary medications.  Furthermore, it also adds complications to things like being sedated because his tongue is tied in such a way it causes blockage in his throat.  Fortunately, he came through sedation like a pro.  When the neurologist gave us clearance we conferred with the surgical team who said they would clear him for September and put him on the schedule for the 4th. 

Yeah!  Or so we thought.  The next day the neurologist called to say Addison had to start a new trial of prednisone at double the dose.  We called to cancel the surgery.  Or so we thought, again.

Which brings us back to Wednesday.  The pre-op nurse in Connecticut called to get things set up for Addison's surgery next week.  I explained we had called to cancel and went through the whole bit.  She said she was going to check with the surgeon and get back to us.

I had a few hours to toss things around.  Did the MRI being moved from the 4th and the surgery not being removed from the schedule mean we were supposed to go for surgery or was there something else happening that we should be considering.  I finally settled in my mind that it was a mute point because surely they were going to cancel the surgery, again.  But when the surgeon called later in the day he said because Addison would be down to just one dose a day and only 2 days away from his final dose he felt it would be safe to operate.  However, he wanted to talk with his team and get clearance from the anesthesiologist.

Today while Addison was having his MRI the surgeon called from Connecticut to tell us Addison was fully cleared on their end pending receipt of a letter from the neurologist giving approval.  We have contacted his neurologists and are awaiting their answer on this front.  Because of the increased risk of infection and slowed healing process we have questions as to whether or not the timing is good for surgery.  However, we would be so relieved to at last have this issue fixed so our fellow can commence with eating and speech therapy.  We are specifically praying if it is God's will the neurologists give clearance and if it is not God's will then they will not approve the surgery.   

In other news, today Addison moved down to just two doses of meds a day.  Yeah!!!  Just 10 days to go.  So happy.

And that is the long and the short of it.  I wish I could say something inspirational or witty or even intelligible right now.  But I am just tired.  I don't mean sleepy.  I just mean tired.

Thank you again for your words of encouragement and most of all your prayers.  Kaitlin created a chain in our dining room with all the families and churches who have told us they are praying for Addison.  The kids said there are more than a hundred links.  Gratitude is too small a word for what we feel.
Love to each,
Kat for the Wachter family 

August 21, 2014

In Every Life a Little Rain Must Fall

Joy.  Count it all joy.  It is redundant to say life feels as if it is full of trials right now. 

Infantile seizures.  Lyme's Disease.  Broken appliances (dishwasher, water softener and washing machine).  A bum tractor.  A new transmission.  Missing vacation.

Keeping a positive attitude and a spirit of joy requires a lot of effort sometimes.  But we are always rewarded.  Because who feels good when they are worried... pouting... whining... 

Being surrounded by an amazing group of people is definitely a help and a blessing in times of trial.  When one of us is feeling low the rest of the gang lift us up.  And then the next day we swap.  When Addison had to double his meds and it seemed as if we were taking a big step backwards, we spent some time listing some of the blessings we have seen in the last month. Here is our rainy day list.  Please feel free to add to it.

1.  Seeing God work and hearing Him speak. 

2.  Answered prayers.  No Hypsarrhythmia.  Good doctors.

3.  Being quarantined.  Not easy to do.  And we sure miss our loved ones, worshiping with our church family and attending all the fun summer parties.  But... Life has been super crazy since Addison was born.  And we have all missed the calmer pace of life and regular family time.  Being forced to stay at home has allowed us lots of time together.

4.  We thought we appreciated Henry's accomplishments before!  We had no clue.  If he lifts his head or focuses on someone we all come running to clap and cheer and praise the Lord.

5.  Snuggles.  Addison has always loved to snuggle and yet there never seemed to be enough of him to go around.  For more than a month we have cuddled and snuggled almost 24/7. 

6.  A quick diagnosis.  Many babies have seizures for MONTHS before they get a diagnosis.  A quick diagnosis and treatment are essential to having any chance of a good outcome. 

7.  Access to excellent medical care.  One mom had to travel 6 hours one way to get treatment for their baby with Infantile Seizures.

8.  Good health insurance to defer the crazy expense.  Just one night in the hospital costs $15,000.  And that is just the beginning.  I am grateful for good health insurance.  Which makes me grateful for Allen's employer. 

9.  Miss Trudy.  Addison's physical therapist and someone we count as a friend.  She not only helped us to identify the seizures but she is 110% dedicated to helping us help our boy.  And along the way she encourages us. 

10.  Seeing how this has reached Allen's parents... We have prayed for and reached out to Allen's parents in countless ways over the years.  But we have never been able to really connect with them or reach them with the Gospel.  In fact, they have been kind but never really been attached to any of our kids, even though our kids have always reached out to them.  Shortly after this began Allen's mom called to say she prays for Addison every single night.  She calls us up now just to see how he is doing.  They have dropped by numerous times in the last few weeks.  That's more than an hour round trip.  That is HUGE!

11.  Having Addison with us instead of in the hospital

12.  A greater appreciation for our own potential and the potential of others

13.  Hearing reports of how Addison's story is reaching the world

14.  No sickness 

15.  In many ways knowing Addison has Infantile Seizures is a huge relief.  In the last few months before he started having seizures I was getting more and more concerned that his development seemed stalled.  I didn't want to be discouraging to the rest of the family so I tried to keep it to myself.  On the few occasions when I did mention it, everyone told me he was doing great.  But the fact is, he wasn't doing great.  The Sunday before he went to the hospital I brought it up again with Allen.  And he finally conceded I was right.  Addison was not progressing.  In fact, he seemed to be doing a lot less of the things he had mastered.  In church that morning we had a visiting family with a nine month old girl.  She was adorable and babbling and looking all around.  I fought off tears the whole service.  And I began to wonder if Addison would ever progress.  Maybe all those people were right when he was born and we were ridiculous to think he was going to do great things.  But knowing there is a cause for his delay...  Well, that changes everything.  Infantile seizures sure makes things a lot harder.  But it is an explanation.  And when you know the demon you are fighting, somehow the battle seems a lot more winnable.

16.  Seeing God's people reach out.  The love and prayers and gestures of the brethren have literally brought us to tears more times than I can count this last month.  Many times in trials (and in celebrations) I get so sad missing my family.  Especially in this situation.  Neurology is my dad's area of expertise.  He could help us understand so much.  If only.  But every time I feel so lonely and sad, someone calls, or writes, or drops by or sends a text.  And I am reminded that God has given us a very special family even greater and farther reaching than my birth family. 
17.  Church by the pool.  We miss our church family.  So. Very. Much.  Up until last week someone (who made sure they weren't carrying sickness) would drop by almost every day.  But last week was VBS.  And VBS means some bug will pass through.  Which means we can't have any visitors from church until we know no one picked anything up.  However, we are so grateful for the gift of live streaming.  We are able to sign on every Sunday morning and be part of the worship service.  It's not quite the same but it keeps us connected.  We have taken to having doughnuts for breakfast while we watch the service on the patio by the pool.  I'm not sure how it worked out that way but everyone thinks it is pretty neat.  And actually in some ways it works out better for me.  Usually, I have to step out to feed Addison so I miss the end of the sermon.  And we almost never stay for the second service because it's too exhausting for Addison,  But now I get the extra bonus of hearing the whole first service all the way through and we all get to watch the second service. 

18.  Little baby legwarmers in August.  One of the side effects of the medication is Addison sweats a lot.  His bed is always soaked through.  But his limbs are always freezing.  Emma knit some adorable rainbow legwarmers to keep our guy snug.  So adorable.

19.  Knitting.  I am restless.  I need to be on the go pretty much 24/7.  My mind is always spinning.  The girls have tried to teach me to knit a number of times but I have never been able to get it.  But last week I finally mastered it and knitting has been an awesome way to calm my restless hands. 

20.  Square dancing. In an effort to distract everyone we looked up square dancing on you tube and learned a few steps.  This is not only a fun way to get out of a funk it is excellent exercise.  And not nearly as hard as it looks.

So you get the idea.  Even in our greatest trials we can find blessings.  That doesn't mean you can't feel all the emotions that go along with difficult times.  Believe me we run the full spectrum at least once a day.  But in order to be blessed through our trials we must choose to see how God is working and work to keep a positive environment. 

August 20, 2014

Oh, the Places You'll Go!

Today is your day.
You're off to Great Places!
You're off and away!
You have brains in your head.
You have feet in your shoes
You can steer yourself
any direction you choose.
You're on your own. And you know what you know.
And YOU are the guy who'll decide where to go.
Out there things can happen
and frequently do
to people as brainy
and footsy as you.

And when things start to happen,
don't worry. Don't stew.
Just go right along.
You'll start happening too.

You'll be on your way up!
You'll be seeing great sights!
You'll join the high fliers
who soar to high heights.

You won't lag behind, because you'll have the speed.
You'll pass the whole gang and you'll soon take the lead.
Wherever you fly, you'll be the best of the best.
Wherever you go, you will top all the rest.
Except when you don't
Because, sometimes, you won't.
I'm sorry to say so
but, sadly, it's true
and Hang-ups
can happen to you.

You can get all hung up
in a prickle-ly perch.
And your gang will fly on.
You'll be left in a Lurch.
You'll come down from the Lurch
with an unpleasant bump.
And the chances are, then,
that you'll be in a Slump.

And when you're in a Slump,
you're not in for much fun.
Un-slumping yourself
is not easily done.
You will come to a place where the streets are not marked.
Some windows are lighted. But mostly they're darked.
A place you could sprain both you elbow and chin!
Do you dare to stay out? Do you dare to go in?
How much can you lose? How much can you win?

You can get so confused
that you'll start in to race
down long wiggled roads at a break-necking pace
and grind on for miles across weirdish wild space,
headed, I fear, toward a most useless place.
The Waiting Place...
...for people just waiting.
Waiting for a train to go
or a bus to come, or a plane to go
or the mail to come, or the rain to go
or the phone to ring, or the snow to snow
or waiting around for a Yes or a No
or waiting for their hair to grow.
Everyone is just waiting.

Waiting for the fish to bite
or waiting for wind to fly a kite
or waiting around for Friday night
or waiting, perhaps, for their Uncle Jake
or a pot to boil, or a Better Break
or a sting of pearls, or a pair of pants
or a wig with curls, or Another Chance.
Everyone is just waiting.
That's not for you!

Somehow you'll escape
all that waiting and staying.
You'll find the bright places
where Boom Bands are playing.
With banner flip-flapping,
once more you'll ride high!
Ready for anything under the sky.
Ready because you're that kind of a guy!

Oh, the places you'll go! There is fun to be done!
There are points to be scored. there are games to be won.
And the magical things you can do with that ball
will make you the winning-est winner of all.
Fame! You'll be famous as famous can be,
with the whole wide world watching you win on TV.
Except when they don't.
Because, sometimes, they won't.
And when you're alone, there's a very good chance
you'll meet things that scare you right out of your pants.
There are some, down the road between hither and yon,
that can scare you so much you won't want to go on.

But on you will go
though the weather be foul
On you will go
though your enemies prowl
On you will go
though the Hakken-Kraks howl
Onward up many
a frightening creek,
though your arms may get sore
and your sneakers may leak.
On and on you will hike
and I know you'll hike far
and face up to your problems
whatever they are.
And will you succeed?
Yes! You will, indeed!
(98 and 3 / 4 percent guaranteed.)


be your name Buxbaum or Bixby or Bray
or Mordecai Ali Van Allen O'Shea,
you're off to Great Places!
Today is your day!
Your mountain is waiting.
So...get on your way!

~Dr. Seuss

August 19, 2014

Answered Prayers and Not Quite a Celebration

We saw Addison's neurologist Monday morning to review his latest EEG and make the next steps in the plan.  We saw a big answer to prayer as the EEG from Friday showed NO Hypsarrythmia and no activity associated with hypsarrythmia.  That is the great news.  We began weaning him off the prednisone on Monday and will finish the three week process with his last day of steroids being September 7th.  He will have a standard (1 hour versus the 4 hour) EEG on the 10th to see how he is responding as he comes off the medication.  We will meet with his neurologist again on September 16th.

The EEG also showed the right side of his brain has higher peaks in electrical activity.  This means the right side of his brain is more prone to seizures.  And unfortunately we don't know what that means.

It could be something that will improve as he finishes out the course of meds. 

It could stay as is. 

It could mean he is at a greater risk for developing another seizure disorder as he grows.

It could mean there is something wrong on the right side of his brain which is the cause for the seizures.  Which could mean a plethora of things.  Tumor... stroke... lesions... brain injury. 

 It could be nothing. 

An MRI can help determine if there is something going on in that precious little brain of his.  For whatever reason the neurologists have ordered this test repeatedly and for whatever reason the hospital can not seem to get it scheduled.  I can't help but think the Lord has some reason for delaying it.   Dr. R. sent another order yesterday and his assistant was supposed to contact that department and find out what is up over there.  Regardless, Addison will need to go under sedation so perhaps it is better he hasn't had it done yet. 

The bottom line is we can not know much for certain.

Actually, we always head to see Dr. R thinking we are going to get some answers and put things to rest and we always come away with more questions than answers.  As we were asking questions Dr R again pointed out... "We just don't know.  We are on the cutting edge of Infantile Spasms.  And there have been no studies in kids with Trisomy 21." 

That gave me a sick feeling in the pit of my stomach.  And it took me a full 24 hours to figure out why it was nagging at me so badly.  I think it is this.  Yes, Infantile Seizures is very rare in the general population.  But 10% of children with DS are diagnosed with IS.  That's a lot if you consider 6000 children were born in the US last year with DS.  There have been a number of studies in the last few years.  Lord knows I think I have read all the medical journals in the last month pertaining to Infantile Seizures.  In fact, Addison is part of a study group at Children's right now.  So my question is if those with DS are the majority of the population with IS why have the studies not involved children with Down syndrome up until now?  I couldn't help but wonder if it isn't because, as a general rule, people still don't view kids with DS as worth the time or effort.  From our local school system I was told kids with DS will only read at a 4th grade level when they graduate high school.  (Which by the way I think can be much better).  And so perhaps there is also a message that if they are going to have learning disabilities and low IQ's anyway why worry about taking care of their brains. 

Don't get me wrong.  I in no way mean to imply this is the belief of any of the people who are caring for Addison.  They are all very personally invested in helping him come out of this victorious.  But I do have to wonder why studies aren't including the Down Syndrome population.   Maybe I'm being too sensitive.  But I think it is still a reasonable question.      

Anyway, the bottom line for our visit was we come away with a good report.  And I think Dr R is the only person in the world who can give you good news and leave you feeling worse than when you went into his office.  We feel he is an excellent doctor and certainly tops in this area but somehow it is hard to rejoice when we have more questions than we started with.

Dr R did reiterate we should expect it to be many months before Addison's brain is healed enough to be making connections that will allow him to begin the learning process again.  He will be starting at about ground zero.  Most days we are okay with that.  We know God is in control.  But there are times when it seems so daunting.  Sometimes we have to work to stay positive when he see him continue to go down hill.  In the last week he has even, for all intents and purposes, lost his ability to sit up.

A friend of ours stopped by with her adorable (and oh so chubby) 5  month old on Saturday.  We enjoyed loving up on him so much.  But seeing him made Addison's regression even more pronounced.  For starters our little friend weighs a pound more than Addison now, who is three times his age.  As I held his fingers he supported his own weight.  N is almost sitting up already.  He is learning to eat purees and can feed himself a bottle.  Our darling 15 month can not do any of those things today. 

But we are getting ready.  We are lining up our ducks for the day.  We are working with his therapy team to start putting together a new and revised plan so we are ready when he is ready.  We are also exchanging emails with a neuro development specialist to gain information which will hopefully help Addison regain some of that brain power a little quicker. 

Monday morning I was studying in 2 kings about when Naaman called to Elisha for healing and Elisha told him to go for a dip.  Naaman wasn't happy with that response because it wasn't what he expected. God has many ways of carrying out his will and sometimes it doesn't look like we think it should. But we still love him and we still thank him for the ways we see him working.

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

August 5, 2014

Good News, No News, Bad News

We were really looking forward to our meeting with the neurologist Monday afternoon.  Sometimes, you live so long in the middle of not knowing that even the prospect of bad news is better than continuing in this sort of Never Land.  So long as you know for sure where you are and where you are going.  And besides, we were sure it would be good news.

We came away with a little good news but mostly no news.  And then tonight we got the bad news.

First, the good news.  Dr. R was frustrated because the person in charge of reading the EEG had not gotten him the report by the time we were scheduled to meet.  However, the neurologist in charge of reading the report said they saw no Hypsarrythmia on the EEG.  Sounds like good news.  And to a degree it is. 

You have to know a few things to understand what I am getting ready to say.  The worst case scenario with Infantile Spasms and Hypsarrythmia would be where Addison was three weeks ago.  Chaotic brain waves and seizure activity 24/7.  So the decreased seizure activity and not seeing Hypsarrythmia on the EEG means he is improving.  BUT in a lesser degree of infantile seizures the brain activity is normal at waking but hypsarrythmia appears during sleep.  Because of the way the brain connects and processes this is still a pretty dire diagnosis in terms of development.  So when doing an EEG to look for Hypsarrythmia the best case scenario is to have some sleep and some wake time. 

Only Addison doesn't sleep.  The meds keep in awake pretty much 24/7.  At best he doses off for a minute or two (and I mean literally a minute or two) at a time.  When we saw Dr. R on Monday he was trying to get confirmation from the neurologist reading the study as to whether or not there was enough sleep on the EEG to conclusively say Addison is not reverting to Hypsarrythmia when he sleeps.

And then there is the complication that the EEG was not done on the day when weaning begun.  Which means if there is hypsarrythmia present we don't know if it is because the medication did not work or because he reverting when coming off the medication.  Allen and I were particularly frustrated with this bit of news because if it is that important to have the EEG on a specific day why do they not make provisions for that? 

On top of that Dr. R. some concerns about Addison's sodium and potassium on the steroids.  And unfortunately, he has incredibly weak veins.  This is in part hereditary and in part because of his hypotonia.  The bottom line on that is despite needles and bruises and a lot of crying they were not able to draw blood.  Eventually, two phlebotomists gave up. I have never known that to happen.  I've seen them work on him for 90 minutes before but never known them to give up.  So we don't have any way of knowing how his electrolytes are responding to the steroids.

Among other things we don't know... if he will need to do ACTH... how long before he begins recovering from the steroids... how to get nourishment into him... how to deal with his constipation... how long before we might see some hint of our son... how long before his immune system will be strong enough to withstand normal day to day contact... what to do about the rash...

Dr. R did say we should expect it to be many months (maybe 6 or more) post steroids before Addison's brain is able to start learning again.  That's not getting to where he should be or even getting back to where he was, that is just his brain making connections again in a way that is organized enough that he will begin the learning process again. 

Yeah, my heart broke.  Allen is either very optimistic or in denial.  He said there is no way it will be that long.  Only time will tell.

Dr. R did tell us he would connect us with a hospital and a neurology team down south so we could schedule our vacation for September. 

And in regards to Addison's surgery Dr. R told us once Addison has weaned from the medication he would defer to the surgeon and anesthesiologist as to when Addison could safely undergo his mouth surgery. 

Dr. R gave us the new weaning schedule which would have Addison going down to 2 doses from August 5-10, 1 dose August 11-15 and then off steroids all together. 

We are scheduled for a repeat EEG on the last day of medication and we pray Addison will sleep at that time so we can get a pretty conclusive EEG. 

Except, even a good EEG isn't necessarily good news.  Because only time will tell if he reverts back to Hypsarrythmia once he is off meds.  We will meet with the neurologist again on the 18th to revise the plan as needed. 

So in the long and short of it, we came away hesitantly celebrating, possibly, maybe, having a good EEG.  But we didn't want to get too excited... because who knows if it was really good. 

This morning we started counting down doses.  Just 15 to go.  We consulted with his surgeon and anesthesiologist and scheduled his surgery in Connecticut for September 5th.  We met with our beloved physical therapist and agreed to suspend therapy until...? 

Addison had a great feeding when he woke up and we were excited about that.  But by mid afternoon something odd was happening.  Not only are his cheeks swelling but now the inside of his mouth.  Making it even harder for him to swallow.  He ate just about nothing at his second and third feedings today.  We watched him closely and prayed that he can make it just ten more days.  He took miserable to heights unknown this afternoon. 

And then something happened this evening.  He stopped moaning.  He sat up.  He looked around.  He made some happy sounds.  He watched the big kids splash in the pool.  He even held a seashell in his hand for quite some time. 

We smiled.  We saw hope.  We knew things were looking up.

And then Allen saw a message on his cell phone.  The doctor called.  And that's the bad news.

After getting the final read on his EEG there is some disturbing activity in patterns close to hypsarrythmia.   And they will actually stop the wean and instead increase the steroids.  We won't know all the ramifications of this until tomorrow morning.  But tonight one thing is clear... it stinks!

August 3, 2014

Another Day

Friday morning Addison was scheduled to be at Children's National Medical Center in D.C.  Traveling to D.C. in the throngs of rush hour traffic is not a task to be considered lightly.  We live only about 60 miles away but even in the middle of day when traffic is at its lightest this trip takes us 1 1/2 to 2 hours.  We had planned to leave our house around 6 am to allow for the crazy rush hour traffic, have time to park, check in at security and get Addison registered.

We could tell there were many people praying for our journey!  We made it to the hospital in what is typically the worst traffic of the day in just 1 hour exactly.  There was never even one of the typical stand stills or slow downs.  Really, I can not stress how amazing this is.  If you have not driven in D.C. traffic you will never fully comprehend it. 

Anyway, instead of the usual stress of dealing with traffic and running from the parking deck to not be late we had an hour to sit and pray and drink a cup of coffee before we had to get Addison connected to the EEG.  This is the first time in weeks we've had to just sit for a minute.  It truly was a good start to such an anxiety producing ordeal.

The test itself went as well as such a thing can go.  The hardest part is getting the leads connected.  This takes about 30 minutes and Addison does not like being held down for such a long stretch of time.  I think he may be developing some stranger anxiety, too, which does not make matters any better.
One of the side effects of the prednisolone is that Addison doesn't sleep.  Once in a rare while he will go sound asleep for a short time.  He's really completely exhausted.  It doesn't help that it seems when he does finally go to sleep, he only gets a short nap before we have to wake him up for his meds.  That is just so wrong it isn't even funny.  Anyway, this did help him during the test.  He had to be connected for 4 hours so I was kind of wondering how to keep him calm and tethered to the machine for four hours.  When he was connected to the EEG in the hospital three weeks ago he screamed for hours.  Anyone who knows our Addison knows this is very unusual.  On Friday, he spent the first two hours just lying on my chest snuggling and dozing for 1-2 minutes and then he'd lift his head up and look around and doze for another minute or two.  The last two hours we passed with books, flashcards and singing.

We were not scheduled to see the neurologists on Friday but Addison's lead neurologist stopped in after the EEG was running to check up on him and connect with us.  She asked us a lot of questions.  We asked her a lot of questions.  She reassured us.  We tried to express our gratitude toward her.  Of course, because the EEG had only begun she could not tell us anything at that time.  She did say she was going to try to connect with the head of the neurology team on Saturday and see if they could get us some information so we didn't have to wait until Monday. 

I know I go on and on about this but I have to say again that this level of caring is unmatched any other place in the medical community.  I am completely floored with every encounter I have at CNMC.  There is a team of neurologists who are tending to Addison's case.  The lead neurologist, Dr. FM emails me almost daily.  She has personally worked out scheduling details, spoken to the pharmacy on many occasions (to fix their repeated errors) , answered our questions as if they are the most important thing in her world, and without a doubt we know she truly cares about Addison coming through this victorious.

Last week there was some confusion within the scheduling department about where Addison's appointment was to be held tomorrow.  I was told the head of neurology himself took care of getting it straightened out.  I just can't say enough times how blessed we feel to have access to this quality of care.     

But back to the EEG.  We really don't have any conclusive information to share.  We know from looking at the EEG ourselves that his brain waves are not as chaotic as they were two weeks ago.  We also know that no one was running around freaking out so that makes us think it must have been better than when we were in the hospital.  But we don't know if that is good.  Meaning we don't know if the hypssarythmia has reversed.  Dr. F was going to meet with the head neurologist, Dr. R on Saturday and they were hoping to take a sneak peek at the EEG.  She emailed me early Sunday morning to say they went to look at it but whoever was in charge of downloading it hadn't done it yet.  They thought they would go to the EEG lab later in the day to do it themselves but they were both on call and too busy to get back to it.  It is disappointing to have to wait a little longer for answers but it is such a blessing to know that there are two doctors out there who didn't know Addison before July 15th who care that much for him. 
Tomorrow we will meet with Dr. R and we will, God willing, have a thorough status report at that time.  We will also be making the plan for the next two weeks.  That will include the schedule for advancing the wean from the prednisolone and scheduling another EEG. 

Tuesday we began the multi-week weaning schedule from Prednisolone.  So far he has been seizure free since Wednesday.  So far as we know, anyway.  I say that because we have observed seizures while he was in bed so we don't know if he is having seizures when we don't see him. However, the fact that we haven't seen any while he is awake for several days means there has been a significant reduction in seizures.  While that seems like a good thing, unfortunately, it does not mean that his brain activity has returned to normal.  You can have hypsarrythmia without seizures.  

As for overall health, Addison continues to hold his own.  It is obvious he is suffering in many ways.  His stomach is always bothered from the prednisolone.  He is also extremely constipated from the meds.  He cries out with the pain of the cramps often.  Unfortunately, all the things we can do to help him with it requires trying to get him to swallow something else so we are always trying to balance easing his discomfort with his struggle to swallow. 

His blood pressure was initially high and hovered there for the first two weeks of meds.  This week it is coming down.  While it is not normal yet it is below the high ceiling and has a trend of going down.

His blood sugar goes back and forth.  Today it is higher.  So we pray for it to go down.

He does not sleep really at all.  He is very jittery and has a hard time settling down.  He kind of lays in bed trying to go to sleep and moans in a very sad and pathetic way.  Actually, more often than not someone is holding him.  It is the only bit of relief and comfort we can give him.

While it is a very small thing, his face is swollen from the steroids.  His cheeks look so puffy.  It reminds me of Kaitlin's cheeks when she had her wisdom teeth pulled a few years ago.  This is called Cushing's Syndrome. 

He has also started to develop a rash on his face and bottom. 

He is barely nursing which is disturbing since that is the only way he can take nourishment.  I know I have not made the time to talk about it here yet but structural issues in his mouth make it impossible for him to swallow.  He was supposed to have corrective surgery the week he was hospitalized for the seizures.  So Addison can swallow only a drop at a time which means he is still exclusively nursing.  Therefore every feeding is so very important.  He has no appetite at all so I struggle to get him to eat.  I worry that he is not getting enough and that my milk supply will suffer causing greater problems for him when he recovers his appetite. 
However, he has lost about a pound (down from 18 pounds) and when we weighed him at the hospital on Friday he was at 17 pounds 7 ounces so he is in an upward trend despite all.  The last few weeks I have prayed specifically that even if he couldn't gain during this time that he would not lose any weight.  Those 7 ounces are  a definite answer to prayer for me.

Probably the hardest thing for all of us right now is that Addison acts nothing like the boy we all know and love.  I can count on 1 hand the smiles we've seen in that past 21 days.  He doesn't focus on anything.  He doesn't move or crawl.  He doesn't play.  It's like he is just gone.  We spend lots of time cuddling and loving up on him.  That part is easy.  And, just as always, he is with us through everything... meal time, swinging, pool,  tending the chickens, devotions... whatever we are doing.  But we miss seeing his joy for life.  I have read two stories about little boys who recovered from Infantile Seizures and they are both doing well today.  I am trying to remember they were both where Addison is and they came through it.  But in the meantime, we still miss our boy. 

Tonight I am holding on to God's promise from Luke 6:17
"And he came down with them, and stood in the plain, and the company of his disciples, and a great multitude of people out of all Judaea and Jerusalem, and from the sea coast of Tyre and Sidon, which came to hear him, and to be healed of their diseases;" 

When Addison was born, indeed before Addison was born, we gave his life to the Lord.  We trusted God to heal his heart, and He did.  We trusted the Lord to restore his hearing, and He did.  God can heal his brain just as easily.  Until He says otherwise, I choose to believe He will.  We ask you to join us in holding fast to that belief. 

Friday night we celebrated what God has done and what we believe He will do with pizza and banana splits.

Thank you for your emails, texts, calls, letters, meals and help with errands.  It truly means so much to us.  It may seem like a small thing, but to us the support of loved ones in our hometown and around the world helps to keep us going. 

Friday night we were really worn out.  And I had a migraine.  A little bit of advice.  If you happen to get migraines from bright lights, like say driving without your sunglasses on a bright day or the eye doctor shining those little lights in your eyes... and your baby happens to need an EEG...  When they get to the part of the test where they try to trigger seizures with lots of bright flashing lights, bury your head under a blanket.  Because your baby may think it is cool, but you will instantly get a blinding pain in your head. And that is so not cool. 

While we were gone the kids cleaned the house.  Which was amazing.  My house has literally not been cleaned since before company arrived on July 1st.  It was a blessing to come home and not see a layer of dust on the piano.

But I think I got a little distracted there.  Traffic was horrific coming home.  It took us about 2 hours in the Friday evening rush hour.  And we really were just worn out.  And I had a blinding headache.  So I just wanted to crawl into bed when we got home around dinner time.  But we decided to have some celebrating.  Sometimes you have to do that.  Celebrate.  No matter what.  That's called JOY.  We picked up some pizzas.  But we totally forgot about dessert. 

In steps God.  A friend had agreed to take the boys to their appointment while we were in the hospital.  It may seem like nothing to take the boys to get their hair cut but truly to have one less place to run and one less thing I had to do was such a big relief.  But that wasn't all. 

After dinner the girls brought out a huge tub of ice cream that Miss Peggy had insisted on stopping for.  Then they went to the pantry and brought out all the fixings for Sundaes another family had given us way back at Christmas time.  Banana splits were the perfect addition to our impromptu party.  Isn't it amazing how God started giving us a celebration way back at Christmas long before any of this ever started? 

His continued blessings keep our spirits going and the love of those friends around us continue to encourage us every day. 

Love to each of you,
The Wachter family