March 31, 2015

Addison's March Update... The Not Quite Vacation, Croup, EEG, Sleep Study and the Surgery That Wasn't

Just as Addison was making some great gains on the eating and weight gaining front... just as we dared to think the crisis was over... he woke up with a fever. 

Welcome March. 

By mid afternoon there was a cough.  By evening he was gray.  By midnight he was gasping for air. 

Welcome vacation.

We ended up driving around a strange city in the middle of the night to find a hospital.  Where the physician on duty asked me what was wrong with him.  One might wonder what his purpose there was.  I told him 23 years on the parenting front, including 2 children with asthma and being asthmatic myself, I was going to take a stab at croup or an asthma attack.  But, I reasoned, it was probably croup since he had a fever first and its been my experience that if the fever comes first its viral but if the fever comes after the attack it is usually a bacterial infection secondary to asthma.  I told him we had already tried everything that typically works at home and he simply needed a breathing treatment.

He agreed.   

X-rays showed Addison's lungs were clear but his airways were consistent with croup.  The doctor prescribed breathing treatments with oral steroids and Tylenol.  Does anyone really think Tylenol actually works for their kids' fevers?  And, of course, we simply jumped up and down with joy at the thought of trying to get meds down the inflamed throat of a baby with severe dysphagia.  We asked him to give Addison steroids by injection.

He stared us down. 

To his credit he didn't say a word but simply asked if we wanted his Tylenol in suppository form then. 

Once he was out of respiratory distress we asked to be released.  The doctor says, "If you aren't worried about that blue color, sure." 

We spent the next week taking turns steaming him every couple of hours around the clock.  The girls swear they spent more time hanging out in the bathroom than on the beach. 

Which I think is not far from the truth.  But they all did it together and there was a lot of laughing and loud singing involved so I think it might be a good memory anyway.  By the way, this is not so great for curly hair. 

One afternoon he was struggling and I was really wishing for our rocking chair.  We ended up bundling him up and taking him out to a swing on the beach.  If you have to be sick on vacation, I suppose you could do worse than listening to the ocean waves.

With his little airways Addison already suffers from some, as yet undefined, degree of sleep apnea.  With his airways swollen he could not breath when lying down.  And even when he was upright and his breathing seemed calm and relaxed he would spontaneously stop breathing for a few seconds and turn blue.   For the next two weeks he did most of his sleeping on our shoulders or lying beside us so we could monitor his breathing. 
The steroid injection only lasts for three days so we had to take Addison to see another doctor who prescribed a great cocktail of drugs which we have used with Elisabeth's most severe asthma attacks.  It was very effective in  relaxing his airways.  However, after five days he began to react so negatively we weaned him off the drugs. Which brought on some degree or regression as far as his breathing.

Our original plan was to be away for a week.  However, there was no way he could be reclined in a car seat for 12 hours during the ride home.  Thankfully, God provided us with an opportunity to delay our return until he was well enough for the trip.

Of course, as soon as Addison got sick he stopped eating completely.  Because, really, what else would he do????  I can't say as I blame him.  I don't feel like eating when I am sick.  And if you throw in a swollen throat and medications... yikes!  To say the least, Addison giving up all that hard earned progress at eating and his plateau in weight gain didn't exactly make us happy.

Vacation used to be a lot different.

Exactly one month later, the ENT feels Addison still needs some more time for his throat to recover from the croup.  We are still working to get him back where he was in the eating realm.  Just today we saw the first positive move in his weight since he got sick.  We are waiting to meet with the pulmonologist to further investigate the cyanosis and many episodes when Addison was skipping breaths during this illness.     

Moving on... The third week of March was all about testing.  We spent a few days in DC for follow-up testing including an EEG and Sleep Study.

The sleep study has been on the table for nearly a year.  It took a long time to schedule.  Then it had to be rescheduled.  The test itself went horrid.  I truly don't know if they got any measurable data.  It will still be another month before we get the report back. 

But the EEG.  That was the first positive news we've had in so long... well, I just can't say how long.  There was no Hypsarrhythmia (the brain waves responsible for infantile spasms), which is what the neurologist was looking for.  Nor was there any sign of myoclonic seizures (the secondary seizures Addison had last fall).  There was no evidence that would indicate any sort of seizures or any brain waves indicative of any future seizure issues.  Of course, that can always change, but for now we are resting in the belief that seizures are a thing of the past.  It has been more than 6 months since Addison's last seizure.  Every day without a seizure increases the likelihood he will remain seizure free. 

The last full week of March we cancelled Addison's evaluations at John's Hopkins  in order to travel to Connecticut to visit with the lead Speech and Feeding Pathologist, do pre-op visits and have additional mouth surgery.  But the only thing we can always count on with Addison is things will never go as planned.

When we got to his pre-op evaluation we learned he had a mouth infection.  The ENT who oversees his mouth feels this was picked up during his time at the hospital in Georgia.  He initially said he wanted us to just wait it out a month for the infection to clear up.  After considering it, the next day he approached me and said he had decided to start an antibiotic.  Although, we try to avoid antibiotics with our kiddos, in retrospect I think this was a very good decision, particularly considering his continued refusal of food.  It is very hard to see the area where the  infection settled so it is hard to know if he is improving but what we can see and his improved disposition makes me think he is feeling better. 
.
You might remember he has very tiny ears.  He's never had an ear infection however his tiny inner ears combined with hypotonia rendered him essentially deaf.  In 2014 his ENT in DC put tubes in to open up his ears and give mobility to the drums.  He had perfect hearing following the surgery.

When we were in Georgia none of the doctors could see in his ears to know if they were clear and functioning or blocked or infected or????  This doesn't surprise me because the only person that has ever been able to see in there is the ENT who operated last year.  Sometimes, even he can't see in there.  And, to be honest, if any doctor told me they could see, I probably would not have believed them.  Since we had driven all the way to Connecticut for a surgery he couldn't have after all, we figured we might as well make the trip worth it and asked the ENT to take a look at his ears "just to make sure". 

As it turns out when he got him under the microscope both tubes were completely blocked.  When he was trying to clear them the one tube came out.  This is not too upsetting since we already knew it was sitting in the canal.  There was a lot of fluid trapped so who knows how much the poor fellow has been hearing this last month.  The other ear was not so agreeable.  Dr. K could not clear the tube and in trying to do so the ear sustained some injury.  He started Addison on some topical antibiotic and steroid drops to stop the bleeding, prevent infection, help the ear heal and hopefully open up the tube.  He had a lot of bleeding from the ear for a few days and was quite obviously in a lot of pain.  By the weekend it seemed to be feeling much better.

When we returned to Maryland we went to see his ENT in DC who was very pleased with the way Dr. K handled the situation, even though it was not a great outcome.  He agrees the infection Addison has must have been picked up when he was in the hospital being treated for croup.  He believes under the circumstances Dr. K made the best decisions for Addison in cancelling his surgery and in trying to clear his ears.  And isn't that what we all want... the best for Addison?  He will need to have new tubes put in ASAP so as to restore his hearing and prevent any further developmental road blocks. 

One bright bit of news is that the ENTS have coordinated so that both the mouth and ear surgery can be done at the same time when we return to Connecticut on May 5th and 6th.  This way he will only need to go under anesthesia one time. 

So there you have it.  As is the case with Addison, nothing about March turned out as we had planned.  But hopefully we have come through it wiser, gentler, more loving and with a greater faith than when we started.




 



    

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








March 26, 2015

Calling All Runners - Race 4 Respect 2015

Running is a family affair.  Just as we expect Addison to be a part of everything we do, we trust he will one day tie on his shoes and join the pack.  But in the meantime we work every day on teaching him to sit up on his own and building weak and damaged muscles so he can crawl.  We pray one day he will stand up.  And down the road we have a distant dream he will even walk.  It is hard work for him.  It is hard work for us.  And lately we are more discouraged than not.  We are just plain worn out at times.

Our last month looked something like this. 

We traveled to DC for a meeting with speech pathologists from three different areas to attempt to find ways to help Addison swallow in an effort to avoid a feeding tube.

While we were on "vacation" Addison came down with the flu.  Which developed into croup.  Which landed us in a hospital in Georgia.  And, when combined with his hypotonia and tiny airways, caused him to spontaneously stop breathing  many, many times over the course of two weeks. When he turned blue from lack of oxygen, we took turns standing in steam showers with him and laying awake at night monitoring his breathing.

As a result of the flu, he has lost nine months of hard work at eating and swallowing.  Oh, and during the same time I was in bed with the flu for a week, Allen hurt his back and our two youngest girls came down with fevers and vomiting so severe the doctors wanted to hospitalize Elisabeth. 

We had to stay in Georgia for a week past our return date until everyone was well enough to travel home.  After a 12 hour drive we finally returned home on a Thursday night to feed the kids, unpack and fall into bed after midnight before we were on the road to children's hospital in DC at 6:00 the next morning.  All this so Addison could spend the day hooked up to an EEG to determine whether or not he was having a relapse of Hypsarrhythmia...  which is a chaotic brain wave responsible for a devastating seizure disorder he underwent this summer. 

Three days later we returned for a night at Children's hospital in DC where he had a sleep study to confirm the diagnosis of sleep apnea and determine the degree of his issues.  Which boiled down to a night of no sleep for anyone.  And, although the tests have not been fully evaluated, I have to wonder if we got any measurable information. 

Next up was a three day trip to Connecticut so Addison could have additional mouth surgery in an effort to improve his swallowing.  Except, when we got there for his pre-op evaluation we were told several things.  1-Addison still has not fully recovered from the croup.  2- He has developed a mouth infection that both his ENT in Connecticut and in DC feel he picked up at the hospital in Georgia 3- both the tubes which make it possible for him to hear are now non functioning as a result of the flu.  In an effort to try to get the one tube clear his ear was injured, leaving it inflamed and bleeding.  So we added an oral antibiotic for the mouth and a topical antibiotic in the ear. 

Our two older boys underwent surgery as planned and we made the trip home last night.  I haven't washed my hair in five days.  But first thing this morning we were back out the door headed to children's hospital to see the ENT who cares for Addison's ears.  He quickly informed us Addison will have to undergo surgery to have tubes reinserted.  The good news in this is that he and the ENT who oversees Addison's mouth have coordinated so that both procedures can be done when we travel to Connecticut on May 5th and 6th for the rescheduled mouth surgery.   

Oh and while I was in post op with the boys I got a text informing me Brianna had taken Allen to the hospital in the middle of the night.

It's not an easy life.  Yet, we run the race.  Because we want to help Addison be everything he can be and reach the potential God has for his life.  We do it because we believe he can do it.  We believe he will do many great things in and for this world.   We believe God has a plan for this little big guy.        

But still... If Addison never accomplishes one thing more than what he has today, it is worth every effort.  His life is still valuable and amazing.  His life is worth every minute... every trial... every struggle... every dollar.... every tear.  If, for no other reason, and there are lots of other reasons, then because every tear we shed is matched by ten times the amount of joy he brings to this world.  And lest you think it is just because I am his mama, not a week passes that someone doesn't text or email to tell me they need to see Addison because life is getting them down.  He has some amazing ability to just make you feel all the goodness that is otherwise lost in this world.  It is like his super power or something.  He can't talk... he can't walk... he can't even eat... but his mere existence has a way of bringing a smile and complete peace to anyone in his presence. 

And yet... There is a whole world out there that believes his life is not worth the extra effort to help him succeed.  As a matter of fact the majority of the world believes abortion is the only option when your child has been diagnosed with down syndrome.  And, in fact, there is a huge push for "better" prenatal testing so that no one accidentally should be burdened by a child born with down syndrome.  And any parent who should bring a child with down syndrome into this world is irresponsible and worse than an infidel.

Just today I read an article by Marguerite Reardon of CBS News.  She shared how she came to terms with her daughter's diagnosis of Down Syndrome and how grateful she is she didn't choose abortion.  In response the majority of readers wrote in about how wrong she was for bringing a defective child into this world who would never do anything valuable with their life and instead would be a burden on their parents, siblings and society.  One particularly eloquent writer said:

I think it is wonderful to live in an age, in a country, that allows women (couples) to test for genetic defects and choose whether to abort a defective fetus or to choose to devote the rest of their lives to the product of that fetus.  A child that if lucky will grow up and maybe live independently for 10 or 20 years after reaching adulthood and then die prematurely.
Those who choose to abort, usually go on to have several children.  Whereas, having a child with Down Syndrome pretty much ends reproduction.  Even Sarah Palin quit having kids after Trig (DS) was born."

Last year we chose to take part in the first annual Race 4 Respect because we wanted the world to meet Addison and to know there is another side to a down syndrome diagnosis.  We want the world to see people with down syndrome and realize they are a valuable part of society who make priceless contributions to the lives they are part of.  And what better place to do that than in our nation's capital? 

In 2014 we entered into this race when Addison was healthy and developmentally on target with his peers who do not have down syndrome.  We chose to run because it represents many of the challenges Addison faces every day.  Running is physically and emotionally taxing. To gain endurance it requires discipline and time. When we run we are reminded nothing comes easy for Addison. He has fought for every milestone he has achieved and will struggle for the rest of his life. Yet he continues to endure, to move forward and to inspire all he comes in contact with.

Before Addison was born I claimed Isaiah 40:31 "But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint.

This last year has been beyond anything I could ever have imagined.  Our plate is overflowing.  My strength needs renewing. I was not certain we had the time or resources to take part in this race.  However, because there are people out there who still think Addison, his family and the world would be better off if he were dead, we will be out there standing up for our boy. 

We hope to build a team of 21 people dedicated to helping Addison overcome his challenges to reach his greatest potential and individuals committed to showing the world people with down syndrome deserve to live.  They deserve the same choices and opportunities as every other person.    They deserve respect.


The Race4Respect™, presented by KOONS of Silver Spring, is a 5K Adult and 1K Kids Dash in Washington, DC. Join us on Saturday, May 30, 2015, for the second annual Race4Respect™, one of the most coveted 5K courses in the DC metro area! Run in the shadow of the nation's capital, the Washington Monument and many other DC treasures. The Race4Respect™ is a collaborative project led by devenio, inc. and eight Down syndrome affiliate groups in the DC metro area and surrounding regions including Frederick, Baltimore, Annapolis, Southern Maryland and Richmond.

The mission of Race4Respect™ is to build community partnerships with the goal of increasing Down syndrome awareness. We believe that if given the chance to experience an event with a person with Down syndrome negative stereotypes, barriers and judgments can be overcome.

Walkers and buggies welcome as well.

Click here for more details.

To join Henry's team,

1.  Visit the Race4Respect website
2.  Click on the register button
3.  Select "Join an Existing Team"
4.  Choose Re:Henry - We are INTREPID


March 18, 2015

Realizations

A few weeks ago, Carmella and I were sick with the flu.  Most of the family had headed out to church.  I welcomed the opportunity to curl up with my girl and a box of Kleenex and pop in a video.  At one point during the movie there was a birthday party for a little one year old boy.  The scene moved from this fellow blowing out his birthday candle to him running across a field.  With great excitement Carmella shouted, "Mama, that baby can walk!"  In another heart beat she very matter of fact stated, "I bet he can eat food, too."  My heart fell.  And for a few seconds I was speechless.  That doesn't happen very often.  I snapped to it and told her Addison would walk and eat just like that baby... someday.  And then she was back to zoning out in her fever and movie haze.
But my mind was stuck replaying these two sentences over and over.  Because the truth is, I am no longer certain Addison will be able to walk and eat one day.  Oh, it is not like Addison's needs are a secret.  Yet, this was the first time it ever occurred to Carmella her precious Addison wasn't just like any other baby.  She wasn't sad or upset.  She was just realizing. 

Realizations.  We seem to have a lot of those right now.  And not just Carmella.

Last year it seems as if everyone we know of child bearing age had a baby.  Within a few weeks of each other three of my girl friends told me they were expecting.  I remember at the time thinking by Addison's second birthday all these babies would be walking and talking.  And I remember thinking how neat it was that with his delayed development he would probably be learning to walk and talk at the same time.  And how neat it was that he would be the oldest of our grouping of babies because he would have so many peers at the same developmental stage as him.  One year later all these babies are indeed walking and talking.  My big girls come home after seeing these precious ones and report on their progress.  Sunday it was, "Did you see so and so pulling up and cruising around the nursery at church?" 
Yes, I saw it.  And I also saw Addison sitting amongst the infant toys having no clue what to do with them.  And I am so overjoyed for all our young friends in all their happy, healthy, normalness.  But for my kids... well, they are sad.  And this breaks my heart.  And I want to reassure them.  I want them to know that their brother will get there.  But the truth is some days I am finding it hard to continue buoying their spirits.

Because, just shy of Addison's second birthday, our ten month old friend is doing this something we work at for hours. every. single. day.  Something we now hope Addison might be able to do by his third...  or maybe fourth birthday????  Or maybe it was never part of God's will for Addison's life at all.

Realizations.  My big girls are having them.  And my boys, too.  After visiting with friends, I hear them in the back of the van comparing notes.  And I bite my tongue.  Because sometimes, just sometimes, we have to wonder if anything we are doing is making a difference.

Yesterday, one of Addison's therapists was here.  She has been one of his greatest champions since he was just two weeks old.  As she sat across the table from me, I saw in her eyes the perplexed... the discouraged... the "I don't know what to do"...  in other words, I saw a perfect reflection of what plagues my heart these last few weeks.  I dared to voice my thoughts.  "I never realized how hard it was for people with down syndrome... until we were here.  I truly believed that we might have to work harder, but that with love and determination and dedication... he would get there... wherever there is, right?"  She very quietly replied that is true for people with down syndrome.  But Addison's case is not like other people with down syndrome.    There it was, her gentle acknowledgement that he may never get "there."

Just one more realization of how devastated his precious brain and body are by the seizures and the medication.  Even since infantile spasms and prednisone became part of the scenario we held fast to the hope that he could get beyond that, in time and with work and lots of prayer. 
Up until recently we have held on to all the people we know with Down syndrome.  Look at that little one crawl... walk... talk... She has a job.  He's graduating from high school.  They are getting married.  Surely, Addison will do these things, too... one day.

But the fact is, this isn't just about down syndrome.  This is about seizures... and medication... and brain atrophy.  This is about something that no one even pretends to understand.  For many parents down syndrome is the worst case scenario.  And right now we can't even hope for that.
As we approach March 21st and World Down Syndrome Day I want to say something positive.  But watching our son and brother struggle just plain stinks.  It breaks our hearts on a daily basis now.  Watching him gasp for air is frightening.  Seeing him lose months of progress because of a stomach bug or the flu is a disillusionment that makes you want to give up. 

But you know what?  I choose to Praise the Lord.  Praise the Lord for this boy.  Praise the Lord for His wisdom in making our little big guy exactly who he is.  Praise the Lord for his beautiful smile.  His shining eyes.  His glorious giggle.  Praise God for the amazing, wonderfulness of this incredible being who makes all the questions and the pain of realizations worth it... for the simple honor of knowing Addison.