May 27, 2015

It is Good For Me That I Have Been Afflicted

Today when we were at the lab the phlebotomist asked why they were doing this one specific test on a baby when children don't develop these sort of deficiencies.  I explained it was because he has down syndrome.  She stopped marking the lab orders and stared at me.  Then she turned her eyes down and said, "I'm sorry."

I put on my smile and asked her to please not apologize.  I explained 1- It was okay 2- she didn't know 3- we aren't sorry Addison has DS 4- his diagnosis has been a blessing to many.  

This lady has drawn Addison's blood at least two times before.  In fact, she has been able to get sticks when no one else could.  I know from talking with her previously she is a Bible believing Christian.  Yet, she could not understand that Addison's affliction was not something we are sorry for.  

She responded to me with another, "I'm sorry.  I shouldn't have asked."  I knew she would not understand what I was saying so instead of trying to explain our feelings a second time I tried to put her at ease.  She glanced at the new patient who walked in the door before answering under her breath with one last aplogoy, "He doesn't look like it."  

I didn't know what to say at that point.  She's right.  Addison doesn't have what is considered the classic telltale features that makes his diagnosis obvious.  Even specialists in the care of people with down syndrome have pointed this out.  
And yet... I always wonder what such statements are supposed to mean?  Does it matter what Addison looks like?  Is his lot in life supposed to be easier if people can not see he has down syndrome?  For that matter... what are people apologizing for?  Are they sorry Addison was born?  Are they sorry he won't be just like other children?  Are they sorry he won't likely be the smartest kid around?  Are they sorry he has to get another needle stuck in his arm?   

For the record, I happen to think Addison is one of the most beautiful children in the world.  His blue eyes never cease to amaze me.  I love his hands and feet.  And his smile, which after nearly a year we are just starting to see regularly again, makes me want to weep, it is such a thing of beauty, joy and peace.  Although, I am sometimes heartbroken for the suffering he must endure, I am not sorry for Addison's diagnosis or the trials that come with it.  But none of those things matter, not the way Addison looks... not my opinions... not anyone's apologies.  And the why of it can all be explained by these verses from my Bible study today.
It is good for me that I have been afflicted;... Thy hands have made me and fashioned me:  give me undesrtanding, that I may learn thy commandments.  They that fear thee will be gald when they see me because I have hoped in thy word.  I know, O LORD, that thy judgments are right, and that thou in faithfulness hast afflicted me.  Let, I pray thee, thy merciful kindness be for my comfort, according to the word unto thy servant.  Let thy tender mercies come unto me, that I may live:... Let the proud be ashamed; for they dealt perversely with me without a cause; ... Let those that fear thee turn unto me, and those that know thy testimonies.  Let my heart be sound in thy statutes; that I be not ashamed.  Psalm 119:71-80

May 26, 2015

Colors Of The Wind

Do you have a favorite song that you crank up when you need a lift?  The runners in our family call it a power song.  The one we reach for when our legs are shot and we still have a mile to go.  "Greater" and "Praise You In the Storm" are popular ones around this neck of the woods.

Therapy and eating take up most of Addison's days.  In order to keep feeding time fun we play lots of games and do all kinds of activities.  But by far his favorite way to pass feeding time is listening to music and dancing in his high chair.  Not kidding.  All my children loved music but this kiddo responds to music in a way I have never seen another child.

He listens to classical music while he sleeps.  Teaching music while he plays and the classic Disney channel on iTunes while he eats.  Do not ask me how that last came to be.  It had something to do with his grown sisters.  But there you have it.

He is very partial to the music from Up but does not care for the soundtrack from Cars.  Which suprises me because that is exactly the sort of loud music he would typically go for.  Even more suprising is that his favorite song is "Colors of the Wind" from the movie Pocohontas.  And he is very specific in that he prefers the soundtrack version to the studio release.  Go figure.  But there you have it.  If he is dragging and he still has another half ounce to go, all we need to do is turn this song on and he sits up straighter, gets a smile on his face and starts swinging his arms around.  By the time the song ends, he's pumping through the rest of his honey bear.

When we first noticed his response to this song we were all baffled.  I mean, excpet for Kaitlin, we didn't even like the movie.  But after spending some time listening to the lyrics I got to thinking maybe our wise little man saw a little more to it at the first than we did.  This isn't so far from the way many people of the world respond to Addison and other people with lesser abilities than ourselves.  The most recent example was in an interview with an occupational therapist last month when we were told we need to "normalize" our son.

As I reflect back on many similar encounters since Addison's birth you can chalk "Colors of the Wind" up to one of those things that brings us to tears because we have walked with Addison.
You think I'm an ignorant savage 
 And you've been so many places I guess it must be so 
But still I cannot see 
If the savage one is me 
How can there be so much that you don't know? 
You don't know ... 

 You think you own whatever land you land on 
The Earth is just a dead thing you can claim 
But I know every rock and tree and creature 
Has a life, has a spirit, has a name 
 You think the only people who are people 

Are the people who look and think like you 
But if you walk the footsteps of a stranger 
You'll learn things you never knew you never knew 

 Have you ever heard the wolf cry to the blue corn moon 
Or asked the grinning bobcat why he grinned? 
Can you sing with all the voices of the mountains? 
Can you paint with all the colors of the wind? 
Can you paint with all the colors of the wind? 

 Come run the hidden pine trails of the forest 
Come taste the sunsweet berries of the Earth 
Come roll in all the riches all around you 
And for once, never wonder what they're worth 

The rainstorm and the river are my brothers 
The heron and the otter are my friends
 And we are all connected to each other 
In a circle, in a hoop that never ends 

 How high will the sycamore grow? 
If you cut it down, then you'll never know 
And you'll never hear the wolf cry to the blue corn moon 
 For whether we are white or copper skinned 
We need to sing with all the voices of the mountains 
We need to paint with all the colors of the wind

May 21, 2015

A Mystery, A Spoon and Eleven Ounces... An Addison Update

Some of this will be repeat for readers we have regular contact with.  I will recap for those loved ones in the nether regions who have not been up on the happenings of the last few weeks.  When we last left you, it was the eve of Addison's second birthday.  You may remember from that update he had reached his 18 pound goal the week before only to come down with a cold which caused him to stop eating and lose weight and drop back below the 18 pound mark.  On the morning of his birthday when he weighed in we were slightly disappointed to be so close to our goal and yet fall short.  We didn't have time to stew about it since we had to hit the road bright and early for a full day of evaluations at John's Hopkins.  We were pleasantly surprised when they announced his official weight at 18 1/2 pounds.  Woo hoo!  Happy birthday, Addison.

Otherwise, his actual birthday wasn't all that happy.  He was still suffering from a miserable cold. Some of the meetings that day were helpful and informative.  But there was also not so good news and a meeting with the occupational therapist which was possibly the most dreadful 90 minutes of my life.  We did have our adopted Auntie in to celebrate their dual birthdays over dinner and cupcakes that evening but as we predicted Addison was so exhausted he just wanted to go to bed.    

The first week of May we were again in Connecticut for the surgery Addison was supposed to have in March but which was cancelled because of the abscess in his mouth.  After watching the abscess reform for the few weeks prior no one was quite sure what was going to happen once we got to Yale.  However, regardless of whether he could operate or not, the surgeon wanted to put Addison under anesthesia in order to really get a good look at what was happening under his tongue.  When we got to his office the day before surgery and he was able to see and feel for himself he realized it was some kind of hard mass about the size of a marble.  He was unsure if it was caused by the abscess, the cause of the abscess or something else entirely.  He thought once he got into the mouth he could figure out what it was and remove it, if possible.

The second item on the table for this trip were the ears.  Addison's ENT in DC wanted to have tubes back in his ears ASAP.  Dr. S and Dr. K agreed it would be best to do both at the same time so Addison would not need to go under anesthesia twice. This plan made us very happy.  Since Dr. K is the only one who can do the mouth procedure Dr. S suggested we wait until we went to Connecticut for the ears.  Knowing the smallness of Addison's ears and knowing that Dr. S was able to get the tubes in once we were a little nervous about letting someone else do the surgery.  However, we trust Dr. S very much so we took him at his recommendation and headed north.

When we left no one would be sure if he could have the mouth surgery until he was under anesthesia at which time he would have the ear surgery.  The irony being we could get there and not have the mouth surgery but only have the ear surgery.  Which we could, and would prefer, to have done in DC.  But that's Addison for you.  And as it turns out, in pre-op Dr. K said he wasn't sure he would be able to get tubes in Addison's tiny ears.  They are just that itty bitty.  He said he would not make a decision until he was under anesthesia and could look under the microscope.  At that point it looked something like this.  We took two days off work, paid traveling and hotel expenses, left our family and were putting Addison under anesthesia for two procedures neither of which might happen only to travel back to D.C. and put him under anesthesia again to have his ear surgery.  

Thankfully, Dr. K was able to get tubes in both ears.  He said both ears were pretty bad.  The small ear that had lost the tube, was filled with fluid and the other ear with the standard tube was completely closed off by the gluey stuff that develops from fluid sitting in the canal for an extended time.  The good news is, the surgeon was able to drain and clear both ears.  You may remember Addison had to have a special small titanium tube put in his left ear in January of 2014.  We had done some talking about tiny ears the day before and Dr. K had said with his lack of growth the last year it is possible he has lost an entire year of opportunity for growth in his ears.  The bad part of this being, pretty much by age 5 the majority of the ear growing business is done and what you have hearing wise is the best you can hope for.  When he got in there the doctor was able to get standard tubes in both ears which means even though he hasn't grown in the last year his ears have grown thereby improving his hearing future.  

On the mouth front, once he was under anesthesia Dr. K realized he could not identify the mass.  He knew it was not an infection nor was it scar tissue.  He removed a large bit but could not remove all of it because of the location.  He decided to send it to pathology to learn more.  

This morning I spoke with Addison's surgeon.  He said the pathologist had called him because, and only Addison could swing this, they could not identify the tissue they removed from under his tongue.  The best they could do was rule out all types of cancer and tumors.  They had to give it some name so they decided to call it chronic inflammation.  Addison has had such incredible improvement since it was removed, and because we know it isn't anything life threatening, we are comfortable with this outcome for now.  Go figure.  Only Addison.

Two weeks post-op and it finally seems as if the news is good.  What a change, eh?  Trudy, Addison's physical therapist, said she is declaring this the summer of good news for Addison.  Since recovering from surgery his swallowing has improved considerably.  In fact, last Friday, for the first time in his two years, he successfully took puree from a spoon.  I'm not kidding you when I say this brings me to tears.  Especially, considering the attack from the OT at John's Hopkins concerning his inability to eat from a spoon.  He is now eating 10 bites at a feeding 6 times a day for a total of 60 bites or 1-2 ounces a day.  He is also drinking 6 ounces of fortified almond milk from his honey bear cup each day.  He is able to do this in about 3 hours, which is half the time it took prior to surgery.  Although, he still works pretty hard at this, he is learning the skills and building strength and is improving each day.

One of the great outcomes of his improved swallowing is he is not completely exhausted and in need of a two hour nap after each feeding.  Instead, with the decreased amount of feeding time, the increased energy as he gets more nutrition and not using all his strength to eat, he has lots of energy for playing and exploring.  We are seeing him learn so many new things and he is playing and having fun.  He had a great time at his birthday party on Sunday and was awake for 6 hours visiting with his guests and playing after they left.  This is unprecedented.  Monday and Tuesday he spent hours playing in the baby pool.  Tuesday night, while we were working in the garden, he sat on a blanket nearby and played and babbled and made airplane noises while flying his pinwheel around.  It was such a delight to see him doing the same things our other babies did.  Granted, the other kids were about one year old at the time but this is so much an improvement compared to even just a few weeks ago.  We are praising God and so thankful for His goodness toward us.

Also, in May, we had to write Addison's new IFSP for his therapy team.  I hate these meetings.  We have to decide what our boy will be doing in 6 months and a year and how we will get him there.  My frustration stems for one thing from the fact that there is no way to know what is a reasonable expectation for Addison.  He meets none of the criteria for a typical child nor a child with Down Syndrome.  The experts can't make a prediction so it seems absurd they expect us to do so.  The other side is no matter what goals we set for Addison something unexpected happens to get in the way so we never actually reach any of those goals.  For example, at 12 months old, since he was on target with his peers, it seemed perfectly reasonable to assume he could be eating solid foods by 24 months.  Seizures, prednisone, croup, 4 trips to Yale, 3 Feeding specialists, and 2 mouth surgeries later, we are measuring his eating progress by bites.   Who could have predicted any of that and what could we have done to affect the outcome? I know the paper work is all necessary to their funding.  But, ugg, I find these meetings completely defeating.  After our IFSP meeting, Allen and I decided to throw out the last year and just pick up where we were at his first birthday.

Wednesday morning Addison weighed in at 18 pounds 11.8 ounces on our home scale.  At his 2 year check up later that day his official weight was 19 pounds.  The pediatrician's scale is a little more generous than ours, but either way, he is going so far in the right direction.  He has gained 11 ounces since the decline following his surgery 2 weeks ago and nearly 5 pounds since the end of January.
The pediatrician was properly impressed by Addison's spoon eating and asked about ASD (the whole in Addison's heart), breathing disturbances, cyanosis, croup, language development, seizures, and sleep apnea.  He laughed as he commented on my lack of worry.  I laughed out loud right back at him and told Dr. K, whom I've known for nearly 30 years now, where I've come from this last year makes all these things seem like scraped knees and splinters.

This is the first time since Addison was nine months old his immune system has been strong enough to get vaccinations.  We are extremely concerned about giving him shots, particularly the MMR.  We would appreciate prayers that he does not develop lasting side effects from the vaccine.  Children with DS are at an increased risk for autism as are children who have had infantile spasms.  So he gets the double whammy.  We have prayed about it and discussed it for so long which risk was more concerning... developing one of these diseases or the risk of developing autism from the vaccine.  I can't even stand the topic anymore.  And so we arrived at the only peace we can to trust the Lord for Addison's safety.

Wednesday Addison needed a ton of blood work.  His ears may be getting bigger and stronger but not so much with his veins.  The phlebotomist who has been the one to get his veins in the past was only able to get one and it collapsed before they got even half of what was needed.  We prioritized the tests and hope to be able to get the remaining done when we are at Children's Hospital next week.  Praying for good reports and no more surprises on these labs.

As always we are so thankful for your prayers.  We beseech you to keep on praying as we continue to focus on mastering eating and regaining the skills lost to seizures and prednisone.  While he is making progress,  Addison is hardly able to coast.  He is so far behind, his skills being at about that of a nine month old.  We know he has so very far to go and it will continue to be a tiring journey with many set backs.  But today we are rejoicing in the victories we have seen this last week.
Just to summarize, specific prayer for continued improvements in eating.  We are working on speeding up feeding times and increasing quantity.  Moving on to a variety of purees with the hope of moving to regular mashed food in the next three months or so.  We are working on getting this fellow to crawl.  We hope to see additional words and signs each week.  We pray for continued weight gain with our next goal being the 50th percentile on the DS scale which is 20 pounds.  We are praying for protection from the vaccinations he had today and the last two he will have in a month.  May 29th Addison will have a day at Children's Hospital with visits to many of his specialists.  We pray for an easy day and good reports all around.  After this visit we will be taking the remainder of the summer off to focus on feeding, teaching and physical therapy.

And that is all she wrote.