June 27, 2015

Ratatouille

Farmer's Market season is upon us.  I love to wander through the stalls and gather up the scrumptious in season goods.  But the best part is coming home and figuring out where the ingredients will lead us.  The last two years we've not had many trips to the Farmer's Market.  Time and germ restrictions and exhaustion really took the toll on the simple pleasures of life.  But... all that is about to change, again.    Last week a new Farmer's Market opened in our little town.  Both the location and time are so convenient I imagine it will become a regular weekly trip once again.  Elisabeth and Carmella joined Allen and I for a little date Friday evening while the other kids made our weekly home made pizza for dinner.  In addition to some gourmet pastas we came home with zucchini, spring onions, cabbage, peas and potatoes.  A quick stop at our local butcher for some fresh made Italian sausage and I knew something good was in the making.

Now I don't know about you but my cooking is definitely driven by the weather.  Last night when it was in the 80's and sunny I was thinking this meal would find its way to the grill Saturday afternoon.  Perhaps with some hard rolls thrown in for good measure.  However, this morning it was cool and pouring down rain.  So when lunch time rolled around I was looking more at an Italian Vegetable soup.  But after watching Ratatouille with the kids last night we finally settled on a dish of French Provencal Comfort Food. 


In addition to the vegetables from the Farmer's Market I grabbed some garlic, tomatoes and green peppers we had on hand.  Alas, we had no egg plant because we ate it for dinner the other evening.  The vegetables were cut in half and drizzled with good olive oil and sprinkled with a generous helping of course sea salt and fresh ground black pepper.    

Now this would have been even more flavorful on the grill but who wants to stand in a down pour to grill veggies?  So they went under the broiler until they were caramelized on the outside.  We turned them over and let the other side caramelize.  Please don't rush this.  That's where all your flavor comes from.  But do keep a close eye on things.  Burned is not the same thing as deeply browned.  The tomatoes were tossed with fresh basil from my herb garden, olive oil and salt and pepper.  These are cooked apart from the other veggies so as not to drown the other vegetables in their liquid.  One of the amazing things about a well made Ratatouille is the way all the vegetables simultaneously meld their flavors together while still maintaining all their own characteristics.  When the tomatoes were finished I moved them to a large bowl with a slotted spoon.  When the remaining vegetables were finished they were placed on a cooling rack so as not to steam on the pans.  You don't want your veggies mushy... just tender.  Then the potatoes were diced and tossed with more olive oil, salt and pepper.  These went under the broiler until they were tender and crisp.  Turn frequently.  Meanwhile, the vegetables were chopped and added to a large bowl.  When the potatoes were finished they went into the same bowl.  Lastly, the sausage (this is not really a traditional part of ratatouille but it makes my family very happy) was sliced and cooked under the broiler.  Once it was browned and cooked through it was also added to the bowl, still warm, to gently reheat the vegetables.  
A dressing was made with 6 Tablespoons vinegar (balsamic, white or red wine vinegar is best), 6 Tablespoons olive oil, garlic, and fresh marjoram, thyme and basil from the garden.  I gently tossed the dressing with the vegetables and sausage.  This recipe must be served with a good crusty bread to soak up all the amazing liquids.    It was a wonderful day to sit and linger at the table for an hour while we watched the rain pour down and enjoyed a plate, or two, of this wonderful goodness.  I hope you did the same.  Bon Appetit!

June 26, 2015

My Favorite Running Gear

With running season in full swing I was thinking it would be fun to share my favorite gear.
1. ASICS 2000 Series
For a girl who lives in bare feet the right shoe is very important.  In my opinion these shoes can't be beat for comfort or performance.  Arthritis has left some of my toes deformed and running can take a rather hard toll.  My orthopedic specialist recommends Brooks and I have tried other brands as well but I always come back to ASICS.  They have various lines but in my opinion none offer the support and endurance for road miles as does the GT 2000.  I personally prefer the previous model to this year's newer version but whichever you choose I don't think you can go wrong in an ASICS shoe.  An added bonus:  This spring at the beach I ended up in some quick sand during my morning run.  My shoes were a mess!  I wasn't sure what to do to get them ready for the next morning.  In the end I figured I had nothing to lose and tossed them in the washer.  They came out looking brand new.  I set them on the porch to get some sun to dry them out but that night they were still wet inside.  I wanted to make sure they were ready for my run the next morning so I tossed them in the dryer.  This was a ridiculously loud endeavor but those shoes came out dry and still looked as if they had just come out of the box.  I am thinking I LOVE a shoe that can go in the washer and dryer.

I have lots of different running pants and they are all about the same difference, except for these Asics Capris.  They offer compression support that seems to make my legs less tired.  Make sure you give these a good trial run before you decide to return them.  When you first put them on they will seem too tight but they are intended to be for the extra support.  A definite added bonus is the pocket.  Men's running pants always have a pocket and I have not found many women's pants which do.  These give me a place for my key or inhaler.

Light and cool and it feels dry, even when its not.  I like the curvy cut and gathering at the shoulders which gives this hard working shirt a more lady like appearance.

So 20 years ago I was in the running store buying a new pair of shoes.  They had a good deal on a package with 3 pair of Nike socks.  I picked them up and my athletic sock life was transformed.  I never knew a sock could make that much of a difference in the way your feet and shoes felt.  They were comfortable.  They didn't slip or slide.  They didn't rub.  They were seamless.  At the end of a workout my feet still felt fresh and dry.  I wore these socks at least 3 times a week for 17 years.  As time wore on one got lost here and another there.  But I seriously hung on to that last pair until 2013 when the last one got a hole and I had to concede it was time to move on.  I ended up with the Champion Duo Dry Socks (which are very inexpensive at Target).  These are every bit the performance equal of my of Nike socks except they are as durable.  After my run this morning I noticed a hole in one of the toes.  For the price I still think it has been a good run for these socks.

I seriously would HATE running without my phone.  For one thing we run in a secluded area.  I like knowing my phone is with me should I have an emergency.  For another I could not stand running without some great music.  There have been days when I ran just so I could listen to music.

Because what good is a great playlist if you can't hear it?  This is not something I would have invested in for myself.  Allen gave me a pair for Mother's Day last year and I have to say I love them.  At first I really wasn't crazy for the way they sat over my ear as it seemed they were always falling out.  After months of messing with them I mentioned it to Allen one day and he said, "Did you try changing the tips?"  Duh?  Yeah, I had never considered that.  It made all the difference.  They never come out now and they are comfortable for my longest runs unlike the apple ear buds which hurt my ears after a few miles.  I don't know that I am particularly partial to the Denon brand because I've never tried another wireless earbud, however, I love the blue tooth feature and can't imagine going back to the old fashion kind for running.  These ones do a great job of cancelling noise which is not the best idea for the areas where I run.  This would be a great feature if I ever actually used these around the house, though.  Actually, a few weeks ago I was helping Allen and the sharp sound of the tools was really hurting my ears.  I popped in my ear buds with some music and they served the purpose beautifully.  Although, I was reminded why I don't listen to stuff around the house.  Every two minutes I had to stop and pop the earbuds out for someone to talk to me.  For the record, I keep my sound at the lower end when running so I can hear the traffic around me.
    
This is a great little tool.  In run I can watch my miles and speed and the app syncs with my music to start and pause with my run.  You get voice over feedback at mile markers (or various other settings of your choosing) to let you know where you are in your workout.  Post run it tracks my running history, cumulative miles, average speeds and distances.  It even logs the maps, weather, location, calorie burn, and shoes for each run.  You can choose to use the running coach to help you increase your strength as a runner or invite others to a custom challenge.  As a running family this is a super fun tool and encourager as we all use it to keep track of each others runs.  Some of us aren't particularly competitive but others will run faster and further to keep up with or pass other family members distance for the week or month.  Oh, and by the way, this is completely free.

What about you?  What is your favorite exercise gear?  What item is on your running must have list?

June 25, 2015

Peanut Butter, Measles and the Pink Baby Pool

It's that time again.  The time when I have an influx of emails and texts asking about Addison and I realize I have been negligent in keeping our prayer family updated.
The last few weeks have been a little up, a little down and some plateaus.

Addison's last blood work revealed some questions concerning his liver.  We have no idea what the scope of it is yet but we do ask your prayers.  His doctor wants to run further tests and also do hepatitis screening.  You may remember his thyroid functions were off on the previous round of labs, as well and we have been unable to do the repeat testing.  It is so hard to do labs on him because of his weak veins.  They have only ever been able to get a draw from one location and that one rarely lasts until they get enough blood for all the tests various doctors have ordered.  So we do a lot of prioritizing and waiting for veins to recover in between draws.  Hopefully, we can get this done in July and get a few answers.

One of the things we've been working on the last two weeks is adjusting Addison's feeding.  Before he came down with the croup in March Addison was making significant progress with tiny bits of soft foods placed on his molar ridge.  Unfortunately, he stopped eating all together when he got sick.  We've been able to make progress in other areas but he has never done well with any solid foods since that time.  Last Sunday his SLP came in from Baltimore and spent 4 hours with us.  We mixed up peanut butter and honey with almond flour and rolled them into itty bitty balls, about 1 gram each.  When we place these on his back molar ridge they stick which is ever so helpful for our fellow because he does not need to work on moving it or keeping it where it needs to be.  This allows him to fully focus on "bite, bite, bite."  It is so cute when he says that while moving his jaw up and down.  He was doing excellent with this and progressing each day.  One gram is equal to 4 calories and 32 grams are equal to one ounce of his fortified milk.  He was up to about 20 grams a day by the end of a week.  However, the work really took him a long time so it was like having 3 extra feedings a day.  So we opted to reduce his milk time, taking from 8 ounces a day to 6 ounces.  He began losing weight again.  We debated the benefit of gaining real food action with the weight loss and decided to consult with his feeding team.  After 2 days deliberation we all agreed it was better to back off on food to make sure he was getting enough milk so that he continues gaining weight.  It is everyone's opinion that weight gain should be the top goal.    Four days later he is still see-sawing up and down within 5 ounces.
On the food front... If we think about chewing/straw drinking the easiest way for someone to get food to the swallowing stage is to have it placed on the back molar ridge.  This requires the least amount of coordination and effort to chew and swallow.  The second stage would be the cheek pocket (take your tongue and push out your cheek and you will  know what I mean).  Third is to place a straw or food over the teeth at the corners of the mouth.  The hardest is at midline on the center of the lips and tongue (the way most of us sip from a straw).   Addison still works to eat at the molar ridge but has made excellent progress and gained strength.  His specialists suggested we try moving on to stage 2, the cheek pocket area.  We have been working on this the last week and a half and he is doing very well with his straw.  (No, he does not suck it up.  That is a lot of coordination and hard muscular work he has not developed yet).  Because it is so hard to get purees on a spoon to this area she suggested trying purees in a syringe so he can practice moving food where it needs to be and build musculature in the cheeks.  He is doing very well with this.  We opted for yogurt in place of vegetable puree to give a little more calorie boost.  He is up to 5 ML total today.

As is so Addison, his greatest trouble still resides in his mouth.  In May, following the removal of the tumor under his tongue, he was making excellent progress on feeding.  He actually completed some feedings in just 30 minutes (versus 90 minutes)!  Fourteen days post-op his mouth looked amazing.  Two days later during his morning mouth therapy we noticed the growth was back just as it had been prior to surgery and there was a second growth on the lower gum ridge in front of one of his incisors.  It was with amazing frustration I called his surgeon.  He went back to the drawing board and decided to try a round of steroids and see if they had any impact on reducing the growths.  After ten days there was no change.  We are going back to brainstorming on this.  Addison had stopped sucking on his tongue following his surgery.  Since the new growths have appeared he has returned to this detrimental behavior.  He has become more sluggish in feeding ans has become resistant to food and therapy at  time.  Addison's lead SLP feels certain this will have a negative impact on his Oral Placement Therapy and Development and will slow or stop his feeding progress.  She feels there must surely be a way to identify and permanently get rid of the tumors.   I am wondering what could be left if we've tried surgery, antibiotics and steroids with no or very short lived results.  Blast.  We are waiting from word from his surgeon as to how we will proceed.

In the meantime, Addison has had many teeth coming in since his surgery.  He went from 1 or 2 to 10 in this short time.  Which is wonderful because there was question as to whether or not he would get any teeth when they had not erupted by his second birthday.  It takes forever for his teeth to actually come through.  And he has multiple molars coming through at once.  (His teeth placement is completely random, which is not uncommon for children with DS).  He has been working on a back lower right molar since February and it is still not through all the way.  Often his mouth is bleeding from the effort.  And the point of this is to say, the poor fellow is in pain.  So I am hesitant to say his issues with eating, resistance to therapy and tongue sucking are related to the growths.  There is simply too much going on in his little mouth at once to zero in on just one thing.  And while I am certainly very concerned at the return of these masses, and I surely want to do what is needful for Addison to eat and speak, I don't necessarily want to rush back into surgery if it isn't necessary... especially, because 2 weeks is not a very long outcome.
And then Sunday morning Addison woke up covered in a red sand paper rash.  After three weeks with a peculiar rash of my own, which was not responding to treatment, I ran it by my doctor during an appointment on Friday.  As it turns out I had shingles.  Laughingly, my doctor informed me it is most commonly triggered by physical and emotional stress.  She informed me I have enough of both in my life to cause a good old case of shingles and she suspects this will not be the last of it.  Shingles is only contagious to those who have not had chicken pox or the chicken pox vaccine.   Addison's pediatrician (who shares our very laid back view of such things) has always cautioned us to exposing Addison to the varicella virus.  Because of his weakened immunity and pulmonary weakness he feels it could be devastating to Addison.  Even though he has always advised against vaccinating our children for the chicken pox, in light of Addison's diagnosis he recommended we have the entire family vaccinated to provide him with a safer environment.  The irony being, because this is a live vaccine and because of his compromised immune system during seizure treatment he has not been able to receive the vaccine himself.  Which means he is the only person in our family not immune to the chicken pox.  Furthermore, a person can not catch shingles and the only way to get chicken pox from someone who has shingles is by direct contact with the rash.  That's relatively easy to avoid then.  Unless, you are a nursing mother and the rash happens to be on your chest.  And your child can't get nourishment from any other source.  Blast, again.  And how much more annoying to find out he's been exposed for nearly three weeks and I didn't even know it?  But then I reasoned he has been exposed for three weeks and didn't break out with the chicken pox so it must be okay.   Until two days later when he woke up with a rash.

But that's not the end of the story.  A few weeks ago Addison had his MMR vaccine.  Allen and I were very concerned about giving him the MMR.  He is at a high risk for side effects and also at an increased risk for a diagnosis of autism, which may or may not be linked to this vaccine.  Seriously, we laid awake talking and praying about this for some time before finally deciding to have the shot.  We were thrilled when he didn't run the crazy high fever our other kids got with this vaccine and actually had almost forgotten about the whole thing.   Leave it to Addison to keep us guessing.  As it turns out, some people can develop a small case of the measles with the vaccine.  According to the CDC this is not of any concern because the virus can not multiply so it's spread is limited and it will pass its course without any issues.  Nine kiddos and Addison has to be the one to cause trouble.  Dear Lord, I love that boy.  But could he not go ten minutes without causing every member of this family to worry?

I received Addison's updated evaluations and IFSP this week.  For almost every area of development he is still placed around an 8 or 9 month old.  Some days this is very discouraging.  Tuesday was a rather low day for me.  However, overall, we continue to be amazed at Addison's progress in the last 6 weeks or so.  His receptive language skills seem to be growing exponentially and we often think we are hearing more expressive language as well.  He is using his signs more purposefully than ever before.   He is also beginning to take an interest in toys other than swinging them around and chewing on them.   He absolutely LOVES our cats and when we are outside he will go crazy if they come into sight.  He will work so hard to try to get them and if they come close enough he delights in petting them as long as they will tolerate it.

Addison's gross motor skills have increased considerably.  The baby pool has really been a catalyst for him to rotate and move into quadruped.  Unlike other children who seem to hesitate as they get used to the buoyancy, Addison gained confidence with the water very quickly and has developed skills in the water which he struggled with on the floor.  He has transferred these skills to his floor time.  In the deep water, he uses his flotation device to propel himself around kicking his legs.  This is excellent for strengthening his lower body which is otherwise very difficult for him.  An added bonus to the pool is he has always been very affected by hot weather.  When he seems to be wilted and not very responsive all we need to do is put him in the pool and he perks up, eating better, giving us smiles and playing cheerfully.  Some days he will even skip his typical morning nap if he is playing in the pool.  There have been times when he wouldn't eat we sat him in the baby pool and he happily drank his milk.  He still leaks a lot of milk when drinking from his straw so this ends up being a milk bath.  But I have found with Addison you do what you have to do.

And on that note...

June 18, 2015

Preparation and Some Lessons Along the Way

I constantly stand in awe of the ways God works to bring seemingly unrelated events of our past, present and future together for His purpose and great good.  This undeniable truth of how everything is woven together ought to alone be enough to dispel the myth of evolution and prove the existence of an all knowing, all powerful creator.  But let us not digress.  This is truly another topic for another day.  As important as such an argument is what I really want to zero in on is how God prepares us, uses us and ministers to and through us.  Recently we have been seeing this happen in a very mighty way.  In actuality this has been happening over the last two years and we have just recently come to see how events since Addison's birth were carefully planned and allowed in order to give understanding to others, gain understanding ourselves and to prepare us to minister.

Since Addison's birth he has suffered from severe dysphagia.  What's dysphagia????  I know.  I know.  I have lost many of you already.
dys·pha·gia
ˌdisˈfāj(ē)ə/
noun
MEDICINE
  1. difficulty or discomfort in swallowing, as a symptom of disease.
    "progressive dysphagia"
Dysphagia can range from mild, perhaps requiring an individual to take a drink while eating, to severe, in which an individual can not consume food at all and must be fed through a tube surgically inserted in the abdomen.  At 2+ years Addison still struggles with swallowing even small amounts of liquid and purees.  His only true source of nourishment remains breastfeeding.  His food intake today, for instance totals 4.7 ounces of milk, 4 ML of pureed sweet potato and 1/4 teaspoon of peanut butter.  He can not eat even these small amounts in a traditional manner but rather receives his puree through a syringe, has his solids placed on his back molar ridge and drinks his liquids through a therapeutic cup that allows us to squeeze his milk through a straw.  He spent about 5 hours working to eat these tiny amounts of food.  He works at eating the way I work at a 7 mile run uphill on a 90 degree day.  There are days when the effort of eating is so exhausting he naps for several hours after his meal.  There have been times when he literally has fallen asleep while we were feeding him.  Our work to sustain his health and weight without a feeding tube is a full time job for four people.  Our entire family life is centered around this feeding and napping schedule.  Every ML, ounce and calorie is counted and charted.  And we consider every bite a victory.
This trial began for us in the delivery room when I noticed Addison was not nursing the same as our other babies.  As a newborn he struggled to gain weight even though he spent 4-8 hours a day nursing.  When he developed seizures it took 4 hours a day to get his vital medication into him drop by drop.  As we tried to introduce foods to his diet what had previously appeared to be a difficult trial now appeared to be an impossible and insurmountable obstacle. Our journey to help him overcome the seemingly endless list of complications which cause his dysphagia has taken us to Children's National Medical Center in Washington, DC, Yale University in Connecticut and John's Hopkins Hospital in Baltimore, MD.  He has undergone two surgeries and has therapy 3 times a day every day to strengthen his mouth muscles and teach him to chew and swallow.  We work with two of the top ENT's in the country, the world wide guru in feeding disorders for children with Down Syndrome, a top-notch speech and language pathologist and a doctor of neuro sciences who specializes in treatment and research of people with down syndrome.  Addison has a team of Speech and Language Pathologists who are always working to find solutions and strategies to help him eat.  And yet his problems are so complex, so unique and so multi faceted, we are all regularly standing around scratching our heads unsure what to do next.

In addition to an extreme posterior tongue tie (a hereditary issue), Addison was born with hypotonia (low muscle tone), part of his down syndrome, which makes it difficult for his mouth muscles to move food to where it needs to be for chewing.  It also makes it challenging for the muscles in his throat to move things to the stomach and slows down his entire digestive processes.  With only one of these problems a child would have great difficulty eating.  Additionally, the high dose of steroids used to treat Addison's seizure disorder made his hypotonia even more severe and killed off his taste buds.  That means when Addison has food in his mouth he doesn't feel or taste it is there and even if he did he doesn't know what to do with it.  The lack of taste buds also means Addison never receives the pleasure part (yummy goodness) of the hard work he does in eating.  Therefore he has no appetite or desire to eat.  There are times when our attempts to feed him make him scream.  And I totally get it.  Imagine planning your menu, going to the grocery store, unpacking and storing all the groceries, spending 5 hours fixing a meal, doing the dishes and never being able to enjoy the food.  Not much encouragement to do it again, eh?  And if that wasn't enough, Addison developed a mass under his tongue which interferes with his ability to eat.  He did well for a short time after the surgeon removed it in May but 16 days post-op it had returned and another tumor has grown at a new location in his mouth.  To round it all out, after having only one tooth in his 2 years, the last 2 or 3 months have seen 9 of his teeth pushing through causing the normal pain and discomfort of teething and making anything in his mouth that much more unpleasant.

Our journey to feed Addison has been the greatest trial of my life.  It has often left us frustrated, angry, sad, frightened, screaming and crying.  On at least two occasions I have found myself face down on the floor wailing and asking God to please help our son.  We regularly feel isolated and alone.  It is rare to find someone who can even begin to comprehend the struggle, as even experts in the field don't even pretend to understand how so many things can go wrong in one little mouth.  Loving people who really don't understand offer incredibly frustrating suggestions about what and how to feed him.  I have spent more hours on my knees asking God for guidance and help on this one issue than any other issue pertaining to our children.  EVER.  That's 23 years of parenting talking.  And a whole lot of tears.

And, because it is my nature, I am always asking God WHY?  What is the purpose?  How can anyone benefit from this?  How can He be glorified?  As I look back over the events of the last few years, I see many ways God was working, using our circumstances and being glorified in this situation even before we got to what is, in my opinion, a main point to this journey, even though, it is not likely the only point.
Trust
We have had to make decisions all along the way.  Often we must make quick decisions with little knowledge and frequently in direct opposition to the commonly accepted ideas of therapists and institutions.  Choosing our doctors, hospitals, therapists, and surgeons when they are frequently in polar opposite corners can be very difficult.  How do you decide who is right when we are not the experts?  There are so many types of therapies and everyone believes theirs is the best to help Addison.  We don't have time to waste trying out something which will not help him to gain ground.  There is always the question of do we let God work in the path we have chosen or should we be opting for medical intervention?   In getting Addison treatment we have had to balk the system and stand up for our choices in the face of institutions which the government has given the power to take children from their families.  That is a terrifying place to be.  Every step has been a prayerfully decided one and a leap of trust and faith that the Lord is both guiding us and protecting Addison.

Perspective
We have a precious friend who struggled with an eating disorder when she was younger.  She happened to be staying with us for a few days during the absolute hardest part of this walk.  After coming off steroids Addison lost considerable weight and could not gain no matter what.  Doctors had brought up the suggestion of a feeding tube.  As he continued to lose weight ever day and was no closer to eating food and unable to drink from a supplemental bottle we were in a time of great crisis.  We felt very strongly it was not the Lord's will for Addison to have a feeding tube but we were at a loss to help him gain ground on eating.  As he continued to lose ounces every day we struggled to find ways to get nourishment into him.  One morning I was in my room studying and praying and asking the Lord for wisdom.  Our friend came to my heart and I started thinking of her mother.  Having known several women who struggled with anorexia, I have often thought about our friend and what her eating disorder must be like from her perspective.  However, this was the first time I looked at it from a mother's point of view.

Insight
Interestingly enough, this same young lady shared with me how watching our family through this trial gave her insight to what her illness must have been like for her own mom.  I have never followed up to find out if she shared her new perspective with her mom.  But, knowing this lady as I do I can hear what the conversation would sound like.  I can hear healing.  I can hear tears.  I can see smiles and more strings being tied to two already tightly bonded hearts.  This amazing woman is married now and I can even imagine it has helped her to understand her husband and his protectiveness.

Empathy
In recent months we have encountered two other moms whose children struggle with complex medical issues.  Both are fighting every single day to find ways to nourish their children so they can survive.  Do you understand this is not about children who are picky eaters?  This is about children who would literally starve to death if not for the dedication of their mothers?  This is not something I would have ever understood before Addison.  Oh, sure, because I love them, I would have prayed and sought to comprehend what they were going through.  But I would not have truly "gotten" it.  And to be honest, in this place, the gift of someone truly knowing where we are is something wonderful.  It is such a blessing for me to be able to reciprocate and truly reach out to these women and say, "I get it."  In these discussions there is always a sigh of relief.  And I can get that, too.  Because when I finally encountered Addison's SLP who truly "Got It" she and I were weeping at the idea that at last we aren't alone.  The gift of empathy, while it is not what I would call practical, should never be overlooked.  For in times of great trial I find it the most valuable of all offerings.

Preparation
And here it is.  The big one.  To date I think the greatest reason God has allowed this trial for Addison and our family is to prepare us to minister.  We have spent years now learning and studying about dysphagia and treatments and ways to nourish people who have severe dysphagia.  Things we knew nothing about until Addison came along.

In April our dear friend and neighbor, who has often been like a grandfather to my boys, was diagnosed with stage 4 inoperable esophageal cancer, which has spread to his stomach and liver.  It is only by the grace of God he is still with us today.  Larry comes from a very large, very close family.  All, but his own two children, live nearby.  And yet Larry chose us to walk this path with him.  I don't know why.  And I am sorry he must suffer.  But I am grateful that we can minister to him and serve him in his last days on this earth.  I am grateful my children have sat by his side when he was too weak and too sick from chemo treatments to make his typical, almost daily, trek to our living room.  I am grateful we can offer understanding, empathy, and insight.

Because we have spent two years on the journey of dysphagia we understand when Larry says he can not swallow food.  We understand that he has no appetite because the chemo has killed his taste buds.  We understand how desperately he needs to gain weight.  We are able to minister to him in a way not many people can.  When he couldn't keep anything else down for more than a week after his first chemo treatment I was able to whip up soups and smoothies that kept him nourished.  Our kids have been able to make the fresh pressed juices he desires and keep him supplied in eggs.  Some mornings when he was too weak to fix his own breakfast a team of kids were on call to scramble him a pan of eggs.  One night he told me he had a craving for egg nog.  I took out my favorite recipe, put together a gallon and he drank it up within days.  It is kind of weird making egg nog when it is 90 degrees out.  But it worked.  We keep a running supply of the high calorie goodness in Larry's fridge now and at last count he has gained back 14 pounds.  He told me, "You need to feed this stuff to Addison."  So in Larry's suffering we have gained another person who now "Gets it."  Someone who understands the urgency and impossibility of nourishing a person with dysphagia.  In return for our ministering we have been blessed with empathy.  I didn't have the heart to tell Larry Addison had a very severe life threatening reaction to dairy products so egg nog is not an option for our boy.  But I am ever so thankful we were able to provide it to Larry.

Will egg nog cure his cancer?  No.  But gaining his strength back has helped him tolerate the chemo treatments far better.  And the chemo treatments have shrunk the tumor enough that he is now off all pain medications.  And thus his remaining time has a far greater quality of life than it otherwise would have.  And shockingly while it initially looked as if Larry would not be with us come summer, he is in fact off and going and moving and living life every day.  He couldn't hardly stand up in April and now he drove himself to his chemo treatment last week.  In these additional days he has had time to spend with his daughters and friends and extended family.  He has had time to talk with His creator.  We pray in that time he has settled his questions of salvation and secured his eternity in Heaven.
Addison's story is still being written.  And I have no idea how it will unfold.  Everyday, I question our decisions and choices.  I ask the Lord daily to confirm if we are on the right path and living out his will for Addison and this thing we call dysphagia.  I don't know where it will end.  I don't know if our son will ever be able to eat the way you and I do.  We all literally have dreams in which Addison is sitting at the table eating an Italian feast with us.  I hope for it.  I pray for it.  I work for it.  But in the end what we do is lean on the promise God has it in his hand.  And in the meantime, no matter what happens there are lessons we can learn and ways God can be glorified until the final chapter is revealed.