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.  

4 comments :

  1. Happy Birthday to Addison!! We love you and pray for you daily!

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  2. Happy Birthday to Addison! Prayers, and hugs, friend!

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  3. What amazing progress in such a short time. Your faith is inspirational and I am praying for you all as you continue walking forward

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