March 30, 2015

Addison February Update

When we were eating lunch after church today it became abundantly clear we have not updated people on Addison's status in a while.  Sometimes so much happens so fast it is hard to even find the time to let people know what is going on.  Even when it seems as if things will be simple and quick they turn into something very complicated.  And then, for those who have not had the 'blow by blow" after a week or two it gets really hard to bring people outside the family up to speed. 

When I sat down here to update on the happenings this last week, I realized although we've kept our church family relatively current, those following along here are about 2 months behind.  And, oh my!  A lot has happened in the last 2 months. 

The general idea is that January was a horrific time for Addison.  Through a great and exhausting trial things finally started looking more positive towards the end of February.  And then the last of February, Addison developed croup and things were very bad.  The last few weeks have been slightly better than January but he is still not back where he was in February.

For those who want more details I am sharing parts of update emails from February.  It would just be so needlessly time consuming for me to rewrite what has already been said elsewhere.  As always we will gladly answer your questions via email, text or in the comment section of this post.

February 11, 2015

Just to follow up on calls, text and emails...  We have had three main prayers requests for Addison in recent months. 

1- That he would gain weight every day
2- that he would have an improved ability to swallow
3- For God to send someone to help us

How is God working? 

1.   Up to through last Wednesday (February 4th) we were seeing very small, but encouraging gains every day.  Addison had gained about 10 ounces and was 2 ounces shy of returning to his weight prior to the stomach virus.

Last Thursday (February 5th) Addison did not increase weight at all.  Over the course of the next few days he lost about half the weight he had gained over the previous two weeks.  And to be honest we are all discouraged.  It is hard enough to see but to be throwing everything we have at it and still be going backwards just leaves us wondering what to do now? 

We are at the point we don't know where to turn or what to do and so we have come to the conclusion we must just keep praising God.  And that about sums it up.  I do not intend to say this is easy.  Not that we have anything against God.  Just that we are tired.  Worn out physically and emotionally.   And sometimes we have to draw on all our strength to sing that hymn or read that scripture... because that is all we can do.

I am struggling greatly with the idea that Addison can come through so much, even something as catastrophic as infantile seizures, but he is wasting away because he can't manage the simple ability to swallow.  Which is something so small and so simple no one even thinks about it.  Have you ever thought about or praised God for your ability to swallow????  I know I never did before.   

2.  Last Wednesday morning we had what seemed like a huge break through on the swallowing front.  I cut a craisin into tiny bits and by placing it on his molar ridge he swallowed the equivalent of about 2 craisins.  That doesn't sound like much but for anyone who has been privy to his feeding times this is enormous.  As we approach his second birthday that is the only solid food he has ever swallowed. 

With Cindy's help we found a bottle that we had some success with.  To put this in perspective success means over the course of a days feedings, which total about 4 hours, he empties about 4 ounces of formula from a bottle.  He can not suck on a bottle like you would expect but instead does some weird biting thing to get the formula out.  With his swallowing struggle at least half of this runs back out of his mouth.  To sum up, therefore, it takes 4 hours to get about 2 ounces of formula which totals only about 40 of the 600 additional calories he needs right now.  We count this as a success because he is calm during these feedings instead of screaming bloody murder which is how it used to be. A huge improvement. 

Unfortunately, he does show signs of aspirating (which is a wet breathing caused by food and or liquid moving into his lungs during feeding.  This is a common issue for people with hypotonia) and/or also an allergy to the formula.  He has had congestion and a rash since he started consuming any measurable amount of formula.  We have tried to change to a non allergen formula but he is far less receptive to it than the milk based formula.  We are weighing the pros and cons of congestion which, with his tiny airways could land him in the hospital with more input than we would like from the doctors (read a forced feeding tube) versus getting any sort of calorie into him.  Meanwhile, on the topic of formula, we continue to try various types of bottles and different consistencies for the formula to see if it brings any difference with swallowing or his ability to suck it out of the bottle. 

From his therapeutic feeding cup we can get about 15 sips a day of lemonade in him.  Those may or may not run out of his mouth depending how sleepy he is.  The more tired Addison is, the worse his hypotonia (low muscle tone) is,  making it more difficult to move his mouth, tongue and lips therefore swallow.

The last two days we have been able to get about 1/8 of a teaspoon (daily total) of avocado in him by rubbing tiny amounts on his molar ridge.  This boils down to less than five calories but hopefully will build into some measurable amount of calorie intake over time.

We continue to work on various feeding and swallowing techniques as well as mouth therapy each day.  Of all things, one thing he took an interest in this week was those absolutely horrid marshmallow peanut things.  You know those hard, tasteless orange things?  He held one in his hand and licked it for an hour or so.  In the end he had dissolved about 1/2 of one.  I don't know how much went down versus on his face but I feel any interest in food is a big old plus.

 
3.  One of our biggest prayer requests has been for the Lord to send someone who would help us.  To keep a very long story short (or as short as possible), over the course of Addison's first 15 months we searched all over the tri state area for someone who could help with all Addison's special mouth and feeding needs.  In addition to his hypotonia (which is due to Down syndrome) Addison had a very severe posterior tongue tie.  (not related to Down syndrome... in fact I have the same congenital issue) The third part of the puzzle for Addison is the medication he took for the seizures.  The extreme levels of prednisone killed off the nerves and taste buds in his mouth so essentially Addison can neither taste nor feel food in his mouth.  Therefore not only does he not have the muscular ability to move, chew and swallow food, he doesn't even know its there and that he needs to do something with it. 

Even working with the head of ENT at Children's and George Washington hospital we could find no one who knew how to correct the structural issues or who knew of any therapy to help overcome these struggles.  We finally ended up at Yale university working with the head of ENT and a speech pathologist from Connecticut who is considered the world wide expert on feeding and speech for people with Down syndrome. The speech and language pathologist literally developed the surgical procedure to correct the type of tongue tie Addison has, hunted down the head of ENT at Yale university and convinced him to try it.  It worked and L literally wrote the book on oral placement therapy for kids with Down syndrome.  She is amazing to work with.  But she is also in Connecticut. That makes it very difficult when you are in a crisis.  Addison needs constant hands on with a therapist right now.  Local therapists are no help.  As a matter of fact, several have asked if they can come to us and be part of our therapy meetings so they can learn what we are doing with him because they simply don't know.  Quite frankly when you child is starving and you need help it is not reassuring for the people who are supposed to be helping him to say can you teach me? 
 
Anyway, L (from Connecticut) recently had a therapist in the Baltimore area contact her regarding another client with a posterior tongue tie.  Last week J and I spoke at great length about Addison's history and our current struggle.  By the end we were both about in tears.  I am not sure who was more angry as we recounted the failure on the part of Early intervention and the ENT's that have left Addison with this overwhelming struggle.  Everyone is pretty much in agreement that if Addison had been diagnosed and had surgery prior to the seizures and prednisone he would have developed the oral motor skills to swallow.  But with the added effects of the medication, and the decreased muscle tone from treatment and seizures his struggle has been increased tremendously. 

After 30 minutes of going over his history, J said she wanted me to know that she gets it... not just from a therapist standpoint but from a parents stand point.  She got involved in this type of therapy to help her own son.  She was a SLP and doing all the right things by professional standards and he was still surviving on a feeding tube.  She has just recently completed her level 3 training. 

At the beginning of our conversation J was saying it was probably too far for her to work with Addison.  She sees clients in the mornings while her son is in school and then is home with him in the afternoons.  There just is no time for her to travel the hour to our place, see Addison and be back in time to pick her son up.  She was so moved by Addison's story that by the end of our conversation she asked if she could come on Sunday mornings when her husband was home and could stay with their son. 

This seems like such an answer to prayer.  Not only someone who knows the special therapy needed, but also someone who gets the struggles we are up against, and most importantly someone who is committed to the degree that she will go to such lengths to make it work.  Our first meeting with her will be Sunday February 15th.  We pray without ceasing that she will be able to give us some strategies for success. 

On February 26th we have a meeting in DC which the kids have started calling the speech pathology summit.  L is coming from Connecticut to see Addison and work on a new plan for therapy.  J, from Baltimore, as well as two of Addison's therapists from our local early intervention program will be there as well so they can all be trained in the new program.  Because his hypotonia and physical therapy play such a big role in his swallowing ability, we are hugely grateful for Addison's PT who tries to attend his SLP sessions for opportunities to share, learn and trouble shoot.

So you see, in some ways we see God working and prayers being answered.  In other ways we wonder if Addison will be able to make the progress he needs in the time he needs in order to avoid further medical intervention.  We worry that he is essentially receiving no other therapy at this time because all our time is focused on feeding. 

And we are just plain tired.  In addition to all the efforts at feeding I continue to nurse Addison every 2 hours during the day and setting the alarm to get up and nurse him during the nights.  
 
Work and school and family life don't take a break for all this and we thank our stars for the girls who selflessly have given up pretty much any life of the own these last few weeks to help with feeding, household and helping with music lessons and school work for the other kids.   
 
Thank you for your prayers.  This seems like such a lot of information but it is seriously just the tip of the iceberg.  I sit here amazed to think of all the predictions doctors made when Addison was born.  Every negative thing you could imagine.  But who would imagine this would be his greatest challenge? 

In His Name,
The Wachter Family


February 14, 2015

We are delighted to share some good news today!  Wednesday evening we sent out Addison's update and prayer needs.  What a difference the prayers of the brethren make.  Thursday evening we had a huge breakthrough.  Addison took 3 ounces (net consumption about 1.5 ounces) of formula at his 8:00 feeding.  There have been entire days when he didn't total that much.  Since then he has been taking 2-3 ounces (net 1-1.5 ounces) at each feeding.  For a total of 8-12 ounces (net 4-6 ounces) a day.  He is currently weaning into goat's milk, with a 50/50 ratio which hopefully will alleviate the allergic symptoms.  He has tolerated this much better than the hypo allergenic formula.  We have also been able to fortify his bottles with olive oil which increases the calorie content from 20 calorie per ounce to about 70 calorie per ounce.  He is also having a little more success with the Haberman special needs feeder.  Last night he actually started opening his mouth and making a sound looking for the bottle. 
On the solid food front, he is up to a teaspoon of mashed avocado a day on his back molar ridge.  A lot of this rolls back out but often it doesn't come back out.  So we count this as a win.  We continue to offer miniscule amounts of soft foods but they typically roll back out.  He continues to work with his honey bear therapeutic feeding cup.
 
Today being Valentine's Day we had Ghirardelli chocolate squares at lunch.  Addison has always made a habit of sticking everything in his mouth.  Except food.  We can give him anything food, even a cookie or some other junk we would not give to our other babies, and he immediately tosses it aside.  But today we handed him one of those chocolate squares and with a little help he stuck it in his mouth and being chocolate started to melt onto his tongue.  Who knows how much he swallowed, wore or smeared on the chair but he was tickled with it.  Happiness is seeing our guy like anything eatable.
And probably the best news today was seeing the scale reach 15 pounds 1.3 ounces!  That number is significant because that was Addison's weight before he came down with the stomach virus that is in large part responsible for this crisis.  Getting back to this point is a big milestone for Addison.  I am again reminded how catastrophic sickness is for this precious boy... and so thankful he has remained so healthy.  I am sure he will have more losses along the way.  Our next weight goal is to have him back at his pre-prednisone weight, 18 pounds.  I would personally love for this to happen before his 2nd birthday on April 28th. 
If the weather holds we will be seeing J, the new SLP, early tomorrow morning.  We are really looking forward to this and pray she will be able to provide us with more feeding ideas. 
 
Love,
The Wachter Family


February 18, 2015

We want to thank everyone for their continued prayers for our family.  After 6 months of losing weight with no explanation, Addison has gained more than 1 1/2 pounds in the last three weeks.  It has been almost exactly 6 months since he finished medication, the time his neurology team said it would take to recover from prednisone and begin healing and growing again.  That may explain his turn around but truly only prayer can fully explain the dramatic difference we have seen in the last week.  Addison is taking 8-12 ounces from a bottle daily now, which amounts to probably about 4-6 ounces actual intake.  One week ago we were struggling to get 4 ounces a day in him.  He is also eating about 1 1/2 teaspoons of avocado each day (compared to just 1/8 teaspoon a week ago.)  Last night using the method of rubbing mashed potatoes on his molar ridge he ate 2 TABLESPOONS.  This is pathetic if you compare him to most two year olds but is simply amazing for Addison.  And it is definitely not your traditional way of feeding.  He still is unable to manage a spoon or fork since he can not move food to the back of his mouth when it is placed on his tongue.  But this is progress! 
 
Our meeting with J, the new speech and feeding therapist was cancelled due to icy conditions on Sunday morning. However, her husband stayed home with their son on Monday morning so she could come up our way.  We had an amazing meeting.  Addison jumped right into her arms and was happy to snuggle and get to know her.  She stayed for three hours as we shared what we have been doing and tossed around ideas to try and make a plan for the meeting in DC next week.  We were thoroughly pleased with her knowledge, experience and desire to see Addison succeed.  And if all that wasn't an answer to prayer, we were completely floored when she told us we didn't owe her anything for the visit.  Neither of his feeding specialists are in our insurance plan so we pay $350 an hour out of pocket for these meetings.  Getting 3 hours free of charge is an enormous gift especially considering the concessions she had to make to be here and the 2 hour round trip. 
 
In general Addison has had some incredible breakthroughs the last few days.  And to be honest it isn't anything you can really put a name on.  Except he looks great... alive and ready to fight.  He looks like the fellow we knew before Prednisone.  The last two days we have all just been walking around saying over and over... he looks so good!  He is really vocalizing a lot.  Looking at one of his picture books he said bird several times on the parakeet page.  Carmella was singing the thumbkin song to him last night and he pulled his thumb up and started mimicking her.  He has also been using what appears to be the sign for "Pa."  In his therapy sessions he is making early movements toward crawling like pulling his legs up.  He doesn't seem as exhausted as he has these last 9 months during his therapy and is able to stay awake for about 5 hours at a time, compared to about 2 hours previously.
 
For nearly 6 months Addison's physical therapist and I have been seeking answers to the outcome and treatment of the severe hypotonia caused by the prednisone treatment.  We have not been able to find any documentation or anyone who has any knowledge as to the prognosis.  This affects every part of Addison's health and development from breathing to eating and speech, to fine and gross motor development and on and on.  Two weeks ago I emailed a doctor who is the head of a research program at John's Hopkins specializing in care and treatment for people with Down Syndrome.  I shared Addison's case with him.  The next day his assistant emailed back and said Dr. C would like to take Addison's case on.  This is like a clearing house for all the latest research in Down Syndrome and special issues relating to Down Syndrome.  If anyone can help us find the answer to hypotonia he may well be the one.

In His Name,
Kathleen for the Wachter family
 
February 27, 2015
Things seem to be looking up for Addison these days.  Although we had to laugh when, in a room full of his therapists, one of them said, "if something can go wrong for this fellow he finds a way."  I say we laugh because that is the only way to acknowledge that truth without becoming frustrated.  
 
The really good news is Addison continues to gain weight.  This week he weighed in at 16 pounds 6.4 ounces which is nearly 2 1/2 pounds in four weeks.  What a difference from just a month ago!  
 
It has been almost exactly 6 months since he finished prednisone treatment.  That is the amount of time his neurology team said it would be before he started recovering from the set backs of the drugs.  And in the last week it truly seems as if a switch has flipped and he has turned back on.  In addition to his weight gain he is so active and interacting with his environment.  He is starting to use signs purposefully and use specific sounds to communicate with us.  Foot and Pa are on his list for this week.  For the first time in his life he is trying to use his body and movement to get to his toys or to play with his siblings.  
 
He continues to have tiny progress with sampling food with the biggest step being he is interested in food.  You might remember he couldn't even get 1/8th of a teaspoon a day in solid food.  Now he is up to almost a Tablespoon a day.  Much to the chagrin of his speech therapist he is taking about 20 ounces (net about 10 ounces) a day of formula.  We are very happy with this even though it is a developmental step backwards because it enables us to get bulky calories in him which will help keep him off a feeding tube.  
 
Wednesday we had a call from the Kennedy Krieger Institute at Johns Hopkins.  Addison is moving into the program to 1- gather research specifically surrounding Infantile seizures, hypotonia and dysphagia 2- draw from the pool of researchers to try to find some answers and treatment for the lingering effects of prednisone and infantile seizures as well as the swallowing issues.  This may be helpful to Addison, and we surely pray it will.  But more importantly it may be helpful to the children coming after him who are affected by these issues.  We will have a day of evaluations on March 24th.  After that we are not sure what will happen.
 
Thursday we spent the day in DC meeting with a group of Addison's therapists.  God really blessed our trip.  Included in the meeting was his head speech pathologist and feeding specialist from Connecticut, his local Oral placement therapist who was traveling in by train, and two of his therapists from Early Intervention.  Wednesday night snow was forecast.  Even though it was not a large amount all of us who live near DC know how bad traffic  is on the DC beltway during rush hour.  With even a little snow it's a nightmare.  L was booked for the entire time in DC so if this meeting didn't happen it meant another trip to Connecticut.  We decided we were going no matter what.  We left 2 1/2 hours ahead of time just in case.  As it turned out since the government was running late traffic was lighter than I've ever seen it.  We could have counted the number of cars on the GW parkway.  
 

The meeting itself went very well.  Everyone was very impressed with Addison's improvement.  L, who is the DS speech and feeding specialist, was amazed at Kaitlin's knowledge and the way she carries out mouth therapy.  All three of the Speech therapists said KK should really go into speech pathology.  We are so blessed to have her!  We all learned some new things to try in order to facilitate swallowing.  Probably the worst part was learning Addison will again need to head to Connecticut for another surgery.  He has a lot of scar tissue and part of the tongue tie has reconnected, which is a major reason why he continues to struggle to swallow. 
 
 The funniest part of the day was when I asked L to look at Nathaniel and Aedans mouths.  Ever since we learned that Addison's tongue tie was hereditary and that I had the same issue we have wondered if that could be the cause of Nathaniel and Aedans speech difficulties and why no amount of work, practice or therapy has helped.  Sure enough they both have significant ties.  L feels they should consult with Dr. K when Addison goes back to CT.  How's that for brotherly bonding?  We were teasing that Samuel might feel left out.  L is going to teach Kaitlin the therapy exercises to do on the boys.  I guess that's one way to promote family closeness.  
 
Anyway, all in all we are feeling positive.  A friend has generously offered us one of her vacation properties for a while so we packed up the van and headed south this morning.  We look forward to some rest and refreshment next week before heading back to the fray.  
Love to all, 
 
The Wachter family








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