April 27, 2015

Eighteen ~ April Update

Tomorrow Addison turns two.  We usually do something special on the kids' birthdays... visit a museum, let them choose the meals and, of course, there is always cake.  But Addison can't eat any meal.  He might taste some icing.  And he will be spending the day at John's Hopkins undergoing evaluations and testing.  Not our choice, but how it worked out.  Definitely not much of a fun day for our fellow.  But on par with his last year.

In keeping with that theme this month has certainly had its own share of ups and downs.  We started the month with Addison still recovering from croup, fighting a mouth infection, not eating much to talk about and losing weight, again.  To make matters worse, I aggravated everything by going against my better judgement and attending our annual mission conference, cantata and Easter outreach services.  It was a huge encouragement for me to be part of these special services and programs and a blessing for our family to be able to attend together.

But...

This really left Addison completely shot.  He essentially ate nothing to speak of for the entire week.  Eating simply exhausts him so very much he needs every nap and every full night of sleep to get through the next meal.  It is a guarantee if he misses a nap he will not eat for the next meal or two.  He never eats on days when he must be away from home and typically he will be too tired to eat the next day as well.  And when you struggle to gain weight, as he does, missing a meal is serious business.  So we try very hard not to do it.
But...

Allen and I are always trying to find the balance between doing what is best for Addison and keeping our life as normal as possible, not just for Addison's benefit, but for the well being of our entire family.  So we pick and choose and pray a lot over what the Lord would have us to do.  And then we just know Addison will have set backs sometimes.

As I said, April started with continued set backs following the croup.  The Monday after Easter we went back into lock down mode, so to speak, where Addison's sleeping and eating schedule trumped everything else.  And that is when he finally started making measurable success at taking supplemental feedings from his honey bear therapeutic cup.  We have been working on this since September so it was a rather big deal.  Instead of measuring his daily intake by sips, we were counting ounces.  In that first week he was topping out around 15 ounces a day.  We immediately started to see progress with him gaining a half pound in the second week of April.

And then...

We tried to switch him from high calorie formula to a milk and pediasure supplement.  We had tried this back in January and he not only refused that bottle but also would not take any supplements at all for several days afterward.  Before trying this change we prayed a lot and spent much time discussing the pros and cons of trying to switch him knowing full well it could result in further set backs.  On the pro side for trying to introduce something new was he does not care for the formula.  We reasoned if we could find something he did like and would take more readily it would get him closer to a regular diet.  I was really wanting to get him off the chemical based formula and on to something akin to real food.  He had an obvious, but tolerable allergic reaction to the formula from day one, which caused him to have a rash over most of his body.  He also had wet breathing indicative of an allergy to the milk based formula or a sign of aspirating while he was eating.  We had previously tried to switch to goat's milk and a "hypo allergenic" formula but he could not digest either.  Getting him off formula would be a step in a positive direction all around. However, on the cons side, we actually had something he would take, even if it was not optimal, and introducing something else may turn him off altogether.

As it turns out, he LOVED whole milk from our local creamery.  We added pediasure and olive oil to boost the vitamin and mineral balance and bulk up the calories.  Still not my first choice since we were still giving him chemicals but closer to where we want him to be diet wise. He liked it so much he would squeal for his "honey bear" and bend over to put his mouth on the straw if we took too long to give him the next sip.  He still had the same trouble swallowing so he was probably only consuming about 7-8 ounces of the 15 he was draining from the cup but this was still a big win on the feeding front.  We were flying high for a few days.  Until day four.  We were awakened during the night to Addison gasping for air.  We got him up and when he recovered his breath he began screaming hysterically and would not stop.  Which, caused him to gasp more.  That went on most of the night and continued through the next 3 days and nights.  His color was awful, he cried in some obvious pain most of the time and every time we laid him down he began gasping.  For the first time in his life there was nothing we could do to comfort him.

On Monday we caught up with his pulmonologist who was relatively certain he was having a severe allergic reaction to the milk, which was causing reflux to irritate his airways and causing them to swell.  With his already compromised airways, when he laid down it cut off his oxygen supply.  She prescribed medication for the reflux and we stopped the milk right away.  It took about a week for the medication to settle his gastrointestinal system down and for his breathing to fully recover.

We were back to square one scratching our heads and asking "what can we feed this baby that he can actually swallow?"  I have tried various smoothie combinations before with no success.  But you just never know.  So I mixed up a smoothie using almond milk, banana, and frozen fruit.  I added olive oil to this to increase the calorie intake.  At first he was not really sold on this, which is rather typical for Addison.  It takes a while for him to get excited about anything new in his mouth.  And even longer to figure out how to swallow something different.  Each new texture, temperature or consistency has a learning curve.  After a day or two, he was drinking 3-4 ounces 2-4 times a day.  One big plus to this is we had him on all real food.  The second big plus is he seemed able to swallow much more than any other food he has ever had.  He has worked up to between 8-11 ounces a day with, I would venture a guess, about 75% net intake each day.  It still takes him about 6 hours a day to eat that much.  And it can be exhausting all around.  But when we step back and see the quantity he was consuming just three months ago and how traumatic it was, we thank God for this step in the right direction.

You might remember the goal we set for Addison was to be back at 18 pounds by his second birthday, which is coming up tomorrow.  This goal was important because 18 pounds was his weight on his first birthday, when he was diagnosed with seizures and prior to the cortisol reaction post-prednisone which caused him to lose so much weight to begin with.  Furthermore, 18 pounds puts him back on the adjusted growth chart in the 5th percentile for kids with down syndrome.  I don't normally put much stock in the growth charts because they are so skewed due to the number of overweight formula fed babies.  However, we had to have some way to measure Addison's progress and be sure he was returning to a healthy weight.  He was 50th percentile for weight and height at one year.  In January he was 5th percentile for height and not even on the chart for weight.  We felt if he returned to matching his weight to his height we would be going in a positive direction.

Eighteen pounds.

Three months ago it seemed an impossible goal.  Especially because at the time he was taking no supplements and not swallowing even 1 ML a day.  As we watched his weight spiral down hill, doctors ran tests to determine the source and each of his specialists told us they didn't know the cause.  We were pressured by the medical community to choose what we believed to be only a quick fix by surgically placing a feeding tube.  I can think of few times in my life when I have felt so confused.  We truly believed God had Addison in his hands, as he always has.  We believed Addison had it in him to fight.  But as we were watching him struggle we had to wonder if we weren't confusing God's will with our conviction.  You know, are Addison's set backs God's way of telling us we should allow medical intervention or is it God's way of asking us to trust Him,be patient and allow Him to get the glory in this situation?  And you have to ask these questions.  Because when you are so exhausted sometimes these lines get blurred until it is difficult to discern what is what any longer.

And still, as he has since Addison was born, God gave us those little milestones and victorious moments along the way to help us stay the course.  I believe with all my heart it was the steps forward, not the two steps back, God wants us to focus on.

Eighteen pounds.
Three months ago it seemed impossible but with God nothing is impossible.

And yet...

Every time it looked as if we were gaining ground something else brought a new set back.  We have watched him go down hill so fast so many times that every time he skipped a feeding we all held our breath and struggled to not despair.

In February, we finally found a bottle which helped Addison swallow measurable amounts of formula and the nipple split.  And no where could we find another.  

In March, after months of unexplained weight loss he finally started gaining weight and he came down with croup.

And then, when he started taking formula from his therapeutic cup a mouth infection sent him on a three week eating strike.

We finally successfully transitioned him to milk and pediasure, which he LOVED and drank eagerly, and he had an allergic reaction.

Each victory has been met with a new trial, but God remains the victor.  Medical personnel didn't think we could get him to eat.  Therapists were stumped as to how we could do it.  And most of the time we didn't know ourselves.  But prayer is a powerful thing and God's will always comes out on top.  

And yet, no matter how true that is, Addison will always keep us hoping and guessing and waiting and wondering.  The night he reached his eighteen pound weight goal he woke up with a cold.  Of course, in struggling to breath he has not been all that interested in eating.  Not wishing for a repeat of his breathing issues in March, we started him on his asthma cocktail right away.  It has done wonderful to keep the inflammation down and keep his airways open.  But, his system can only tolerate these meds for a few days.  After three days we reach a point where the drugs are working well but he is so agitated he won't eat at all and he is too wired to sleep.  That point came on Saturday.

Sunday we weaned him off the medication and now we walk the tightrope.  He is eating  a little better but breathing a little worse and somewhere in there is that blessed balance between how long do you let him go one way or the other?    And then there is the weight thing.  On the eve of his first birthday he has dropped back below 18 pounds.

Still, it is hard to be too discouraged.  Because even 17 pounds seemed like too much to ask in January.  And here he is.  Up by almost four pounds.  210 days without a seizure.  This last month he has made lots of progress in language acquisition.  He is saying: airplane, all done, hug, hey there and up.  He can now sign: All done, mama, pa, car and airplane.  Can you see Samuel's influence?  His physical development is coming along, as well.  We see him moving more and making more efforts toward crawling.  With the aid of a therapy block, he can move himself to a sitting position once in a while.  And he even surprised us with 3 teeth coming through, which the dentist had begun to be question if he would get any at all.

Because I know who God is and because I know the strength Addison has, I am holding out hope when he gets on the scale tomorrow he will be back above the eighteen pound mark.  Because that's how our God is.  And, I must say, Addison seems to be like his Pa in that he waits until the very last minute possible.  Maybe he likes that "Wow!" effect?  But even if he hasn't gained I will be celebrating who our guy is.  And I will be resting in the truth God has Addison and together they are bigger and stronger than all our hopes and dreams.  

April 21, 2015

Happy 12th Birthday, Aedan

April 18th our Aedan boy turned 12.  Last year things got so crazy I never posted his birthday pictures.  It has seriously bugged me for twelves months.  I even uploaded them and never got time to journal.  I might still do it one of these days because it annoys me so badly.  But for the time being I am going to get his birthday celebration up before some other catastrophe hits.  

Saturday dawned a day filled with sunshine and lots of warm weather.  And here on the Wachter home front it began, of course, with balloons.  Addison was enormously excited about the balloons and Aedan was thrilled that he could toss them back and forth with the baby.  This two have a special connection that is fun to watch.  From the moment Addison was born he has always reminded me of Aedan both in looks and personality.  "Aedan" (which he uses to refer to any of his brothers) was Addison's first (and one of his few) words.  Aedan loves this and even more so he loves to remind the other kids that Henry doesn't say their names.  The other boys retaliated once by referring to themselves as "Aedan" when speaking to Henry.  Which earned Aedan's rare, but sassy retort, "Get your own name!"  I just love this boy!
 Something Aedan really enjoys are his Koi pond and his plants, one of his favorite being bamboo.  The kids ran with this and worked all week planning and decorating an Asian centered birthday celebration.  They even studied Japanese characters to decorate his gifts.
 Every morning the first thing Aedan does is feed his Koi.  The girls decided it would be good for him to do it with style in his very own kimono.
 Decorations included miniature Zen gardens.  Nathaniel built rakes and bridges out of toothpicks and bamboo skewers.
 We had these lanterns in the attic  from Brianna's graduation.  Nathaniel spent several days folding origami birds and a pagoda.
The day began with some favorite Asian style foods.... Jasmine rice, mango, tea, and tamagoyaki.  I wish we had a photo of Carmella using chopsticks to eat mango.  That sure is slippery stuff!
 And then we took a field trip to Lily Pons so Aedan could choose a new plant for his pond.
Trying to keep Addison on a feeding schedule we very rarely get an opportunity to all go anywhere together these days.  So this was not just fun for Aedan but an encouraging hour for all of us.  The weather was 82 and sunny.  Much different from the 40's and rain the day Aedan entered this world.
 The youngers had fun watching the tadpoles, studying the Koi and checking out the snails.

Aedan and I enjoyed studying various plants.  He had room for only one or two new plants and had a very hard time trying to choose just two.  He did finally narrow it down to a Floating Heart and a Pickerelrush.

For lunch the girls served sushi, egg rolls, wonton soup, and fried wantons with all the trimmings.
 Dessert was a hazelnut cake.  This is probably our very favorite cake after Hershey's chocolate cake.  I love the kites Brianna and Emma made for the top.
 And I love this boy.  He is such a vital part of our family.  His laughter and smile just fill you with joy.  His spiritual insight and wisdom are far beyond his years.  And yet he maintains the beautiful simplicity and innocence of a child.  I think he is exactly what our Lord was trying to describe when he spoke about being like children.
In addition to his interest in gardening, botanicals and fish, Aedan loves school. It makes no difference what the subject he attacks learning with a delightful zeal.  He plays the trumpet and reads like a fiend.  This year his is reading through J Vernon McGee's Thru the Bible and the works of Charles Dickens simultaneously.  Aedan is also a good cook, artist, and likes to play the piano.  Opera is his favorite style of music and he is known to walk around the house singing in Pavarotti.  I am so grateful God chose Aedan to be part of our family.  My life is truly richer because I have known him.  I enjoy watching as the Lord grows and transforms him into the man he is to be.

We spent the afternoon and evening working to clean the winter out of the pond and installing Aedan's new plants.  One of the things I find annoying is I never have my camera with me these days.  I didn't get one picture of this dude in the pond up to his waste pulling out algae.  And it was a funny sight.  But you will have to take my word on it.

Bottom line is it was a beautiful day and a beautiful celebration for our beautiful boy.
"Thou hast put gladness in my heart, more than in the time that their corn and their wine increased."  Psalm 4:7

April 7, 2015

Resurrection Sunday 2015

This year the week leading up to Easter and the weekend was a marathon with a few sprints thrown in. But we came to the other side with smiles on our faces so it must have been a success.   Even though our difficulties didn't go away even for the afternoon, it was a blessing to have the sunshine on our backs, good food on the table and loved ones gathered around.  We had a beautiful worship service with Brother Wayne McRay as a guest speaker, heart moving special music and the orchestra sharing some of their hard work.

The Baskets
 

I will never understand the purpose or meaning behind the Easter basket but it is something my mom did for us and I love to do it for my kids.  
 
 Carmella could not get over her good fortune at having a basket full of chocolate to eat as she pleased.
 I have discovered See's Candies makes the best sour  chewy candy there could possibly be in the whole world.  I don't know how we have loved See's for so very many years without knowing this!
 
 
 The Outfits 
As much as I love winter woolens and layers, there is something amazingly refreshing about pulling out that first spring dress on Easter morning. 

We got these dresses back in January on a super deal at Zuilly.  The girls have been so looking forward to wearing them.  Friday Carmella asked if they could wear them for the Cantata Friday night.  I simply could not squelch her enthusiasm.  She laid all her things out before naptime so they would be ready when she got up.  Then she was so excited to put her dress on, she couldn't even go to sleep at naptime.  Oh, to be three again! 
Elisabeth is getting so grown up and gets more beautiful every day
And my Henry man.  Loving that his cheeks are filling out again.  Hating that he was so exhausted he could hardly sit up.  Love that he loves his hats.  Doesn't he look like a little gangster baby?
 Love these beautiful girls who make holiday planning, party throwing and cleaning up so much more fun than when I did it all myself.  Could not imagine a get together without this trio.   We have some of our happiest times washing dishes together after the guests have gone home. 

Hate that it is so hard to get a decent picture of the most handsome boys in the world.  Love whatever Aedan is doing with his tongue.  Love that they have such great taste in clothes and aren't afraid to where pink and purple.  I hate that I didn't get a picture of Samuel with his sax in this outfit because he looked like he walked right out of an episode of Jeeves and Wooster.
The Table
 
We typically have 60-80 people for Easter Sunday.  This year with the holiday being so early we were not certain about the weather or if we could be outdoors.  It was very hard to limit our guest list. 
On Saturday when the weather reported 66 and sunny skies for Sunday we shifted our plans for an indoor party and set up for an outdoor party.  Woo hoo.  Sunday after church we set the tables and were putting out the centerpieces when a wicked wind started. When dishes started blowing off the tables we moved the furniture out of the sitting room and brought the party indoors. 
As it turned out by dinner time the wind had died down enough we could have eaten outside.  But we had a wonderful time either way so there you have it. 
The upside was definitely that we figured out an way to add 12 more places when we have winter parties.  I so love the way the kids table came out. 

The Egg Hunt

We always have a lot of kids for the egg hunt.  And our friend, Miss Liz, always hits the stores the day after Easter and brings us more plastic eggs and baskets.  This year the boys filled and the dads hid 395 eggs.  I don't get the egg hunt anymore than I get Easter baskets but it is something Allen's family always did and now it is something our kids, and our friends' kids look forward to.  Easter wouldn't be the same without it.
This is such an awful photo but I love it... because it actually captures all that was happening in that moment. 

These two boys have been buddies since they were little dudes.  They are SO VERY COMPETITIVE it cracks me up.  But what I love is that they would never think twice about helping each other in a pinch or partnering up to get a good egg.
Carmella LOVED Easter this year.  I have never had a kid look forward to it as she did.  For weeks she carried a basket around the house hiding and finding eggs.  She dressed her dolls in their Easter clothes and would say, "I just can't wait for Easter!"
Ellie and Ella.  These two girls are inseparable when our families visit.  They were born two weeks apart and there is the name thing.  Their personalities suit each other so perfectly.  They truly are kindred spirits.  When they were younger it never mattered where I put Ella to bed I would always find them snuggled together sound asleep in Ellie's crib and later her toddler bed.  Even as young as toddlers, as soon as they were allowed out of their seats at church they would run to each other to talk about purses, hair, dresses, shoes or princesses. 
Most kids don't take time to look in their eggs until they are relatively certain there are no more to be found but I saw all three of these sisters stop to find out what treats were in their eggs.
I bet they pinch their Christmas gifts, too.
Hmmmm.... wondering what Beka's favorite color is...
 
Dinner
 
It was such a running from here to there sort of day before our guests arrived somehow we got not one photo of the buffet tables but you will have to trust me the menu was delicious.  We always do a Passover Menu and an Easter Menu.
 
Passover Menu
Spring Greens with Matzo
Grilled Leg of Lamb
Orzo with Feta and Parsley
Carrots Roasted with Pesto
Dinner Rolls
Chocolate Walnut Cake with Orange
 
Easter Menu
Layered Easter Salad
Citrus Glazed Ham
Sweet Potato Wedges with Chili Cream Sauce
Asparagus Tart
Biscuits
Lemon Lush
 

This picture makes me so happy.  All these little ones have grown up so much since we first started celebrating Easter together.  I love the way they love each other and look forward to their time together.  I love watching their relationships.  I love watching how they encourage and exhort each other.  That's how the Bible defines friendships to be.  I love watching each one grow in their relationship with the Lord. 
 
"Let the resurrection joy lift us from loneliness and weakness and despair to strength and beauty and happiness."  ~Floyd W. Tomkins


59 Kids!

I am always laughing at the perspective people have when they think of our "large" family.  One, particularly special little friend put it like this.

Grandma:  Did you see Addison in church today?

Hannah:  Grandma!  They have 59 kids!  They have to go to their own church.  If they came to our church there would be no chairs to sit on.  

April 5, 2015

Reflections of Redemption

Friday night our church hosted their first ever Easter Cantata.
 
 I have always wished there was more emphasis on Easter so I was very excited to see what would come of it. 
 Allen and the big girls helped out with acting roles
 And all the kids took part in the orchestra.  I love seeing all our young people working so hard to develop their talents for the Lord.  And they worked so hard!  They were simultaneously working on music for the special Easter services, Cantataa and missions conference.  Their leader and teachers have done an incredible job of taking these kids from playing not even a note to really building into something neat.  Even if they sounded awful, which they do not, their enthusiasm encourages me.
 The scripture dramatization and music were both amazing.  Everyone did a great job bringing their Bible characters to the stage and emulating their personalities.  Each actor had a lot of memorization and I was very impressed at how well each did.
 Kaitlin, of course, kept busy making costumes.  Those who worked on the set did a beautiful job and I hear all the behind the scenes workers gave it their all. 
 We had a wonderful turn out from the community.
 It was beautiful way to kick off this weekend set aside to reflect on the awesome gift of Calvary and I hope it will be annual tradition.
Praying hearts were touched, changed and blessed.  He is risen, indeed!


April 4, 2015

Easter Eggs 2015

The first spring when we had eggs from our own chickens we tried dyeing them.  But with the brown shells the commercial color didn't work.  We ended up going to Sam's Club and buying five dozen white eggs.  Which seems so wrong when we have hens wandering around the back yard and dozens of eggs in the refrigerator.
 
Years ago, when the big girls were little, we had tried dyeing eggs using McCormick's food color and egg dye.  You know the little red box that you buy for the red to make red velvet cake and then the box with the remaining colors ends up being pushed to the back of the baking cupboard where it gets knocked over and the yellow spills and no one notices until everything in the cupboard has traces of dye on them.  It didn't work very well.  
 This year we tried a new dyeing technique using McCormick's dye and our home raised brown eggs.   I don't think we will ever go back.  It was inexpensive.  It was simple.  We were able to create an array of rich and vibrant colors instead of the standard five. 
 We even colored a few dozen to match the colors on our Easter dinner table.
One hint... the kids left a batch of eggs in the dye for a few hours to try and increase the depth of the color.  It didn't seem to get any richer than after the first 10 minutes and after a few hours the vinegar started to cause bubbling on the shells. 
We loved the variety we got from eggs of different shades and sizes.  Some of our eggs are spotted and textured which also offered nice variations in the final product.

You can find instructions and the Easter Egg Dyeing Color Wheel at Martha Stewart.