January 31, 2014

Addison Ear Surgery Update

I know I am seriously long over due posting this update on Henry's surgery.  Thanks for all your emails and texts inquiring about him.  As I shared with our church family prayers are the thing that buoy us up as we get out of bed at 3:00 am to prepare our boy for surgery.  

Addison went through like a pro.  
 All the kids wanted to be with their brother so despite the impossibly early hour we all piled in the car at 5 am with 2 dozen donuts.
And it was nice to have everyone together to pray over our guy before we had to hand him over to strangers.


Our first prayer request was getting the tubes in.  Got answered.  Dr. S was able to drain and get tubes in both ears.  He commented that inside Addison's left ear is much smaller than his right.  He had to use a smaller stainless steel tube in the left.  We see the difference really plainly.  We need to put 5 drops in Addison's ears twice a day.  You can get all five in the right ear relatively easy.  However, getting even 1 to go in the left ear is a challenge.    

Second prayer request was that he would respond well to anesthesia.  God answered.  The anesthesiologist opted to give Addison a smaller dose to compensate for his hypotonia.  He seemed to handle the anesthesia very well.   He did not even get sick on his stomach, which is pretty common.  

Our other prayers were for the tubes to stay in place at least one year, that the surgery will not need to be repeated and that this will restore his hearing.  The verdict is still out on those.

The first day he had a good amount of drainage from both ears which made us feel good that the tubes were doing the job.  This almost completely stopped by the second day following surgery which encouraged us that he is healing well.


He does seem to have a lot of pain.  Addison has never really cried, even when he is hungry or hurt.  When he does cry it is typically like a newborn baby cry.  However, when we touch his ears or put drops in them he grabs at our hands and screams violently.  This took us by surprise because Brianna had no pain when she had this procedure done and it is not often associated with pain.  We trust that it will subside quickly and by next week he will be completely pain free.   

And for his hearing... we won't know for sure until March when he will go back to Children's for another hearing evaluation.  To be honest none of us notice any difference in his response.  However, prior to surgery we all felt he was more responsive to us than someone who couldn't hear anything.  He apparently was compensating for his hearing somehow.  So for now we will wait until March to find out where he stands.  And in the meantime, we are on to speech evaluation.  

January 27, 2014

Ready to go!

We've schedule the appointment. 

And filled in the paperwork.

He's been cleared for surgery by the pediatrician's office.
He's taken his bath.

He's snug and cozy in his new fuzzy sleeper... 

..and stripedy elf hat.
Henry is ready for surgery.

He is ready to hear again.

He is ready to make up for lost developmental time and for his speech to thrive.

Andiamo, let's go!

January 23, 2014

Unemployed


I have spent the bulk of this week preparing for Addison's surgery, which for those who are praying, will be Monday January 27th.  It has seriously taken longer to get the ducks lined up than it will for the procedure.

First it was trying to schedule.  It took an entire day and repeated phone calls for that.  The lady who handles scheduling surgery for Addison's doctor was out so that was 2 days.  She came back on Tuesday when we happened to have a snow storm.  The phone line at children's went out every time she called me.  When we finally got to where we could talk, it turns out Dr. S wanted to do it on a day when Allen was supposed to be out of town on business and I had a day booked with other appointments.  Allen cancelled his trip and I spent a few hours moving all our appointments.
Then there was the preop visit to our pediatrician to get him cleared for surgery.  They were trying to get us in on Thursday because Children's needed the authorization by Friday.  So we had to wait.  A long time.  Actually it took two hours in the doctor's office to get a little form filled out.

So three days spent for Appointments last week.  One day for scheduling and rescheduling this week.  Plus another day at the doctors.  That is 5 days out of two weeks just for medical stuff.  I know that this might sound like complaining but I am really not.  I am getting to a point here.

During one of the calls with the scheduling department the nurse was taking down all our information.  Which I don't quite get, because one of the big selling points at Children's is that all your info and all your reports are in the system so you don't have to fill out paperwork all the time.  And as many appointments as we have had there everyone should know the names of Addison's parents and probably my skirt size and the type of car Allen drives, too.

So this nurse is on the line and we go over our phone number, address, and insurance information.  She reviews all Addison's stats and Allen's.  Then she gets to me.  Name.  DOB.  Phone number.  All those are easy enough.

But it was when she got to this last one that I was momentarily left speechless.  "Are you still unemployed?"

EMPLOY', v. t. [L. plico. ]1. To occupy the time, attention and labor of; to keep busy, or at work; to use. We employ our hands in labor; we employ... Noah Webster 1828

Now, unemployed is what I think of when I see someone lounging about playing video games all day.  Unemployed makes me think of someone hanging out on street corners with signs asking for money.  Unemployed makes me think of when Allen was laid off and spent months searching for a position.  I have never been unemployed in my life.  In fact, the closest I ever came to being unemployed was when I went off to a paying job every day.

I didn't actually know what to say to the lady on the phone right off.  I feel anything but unemployed at the moment.  I just spent 5 days trying to make arrangements to take my son for a 15 minute procedure.  While homeschooling 6 kids.  And mentoring my 2 adult daughters. And planning a baby shower for 3 women.  And overseeing arrangements for a sweetheart banquet for 19 couples.  And dealing with a severe flareup of arthritis.  And tending to 6 kids music instruments and instruction.  And reaching out to several neighbors and other friends in the community.  In there I also crocheted a sweater, worked on a quilt, had a date with my hubby, attended worship, and did yoga for 6 hours.

No, I don't feel unemployed.  And, quite frankly, I resent the implication.  I may be underpaid (no offense to my good husband who provides more than adequately for all my needs and wants) but I am certainly not unemployed.

But I didn't tell her that.  Because as much as she needed to hear it, and as much as I wanted to say it, the truth is I didn't have time to try to explain it.

It just seemed easier to keep it down to a simple, "Yes."

January 22, 2014

A Day in the Life~Down Syndrome and Therapy 8 Months

Addison is currently spending about 2 hours a day on therapy.  We also do an hour of yoga in the evenings.  We are working on moving from a lying to a sitting position and from a sitting to a lying position intentionally, instead of just falling over.  We practice crawling position and also standing while holding onto the couch.

 But physical therapy is only a small part of Addison's day.  We are working on coloring this month.  Which he loves.  This may seem silly.  To be honest if I wasn't Addison's mother I would definitely say it was silly.  But coloring requires fine motor skills that can be very difficult to master.  It also teaches cause and effect as well as using the crayons to teach colors and work on Neuro Development.  We know that using his brain as much as possible will help it to grow and connect synapses which we pray will help to compensate for his learning disability.  And anyway, it's just fun.
 Blowing bubbles is another fun part of our neuro development therapy.  Addison loves to track where the bubbles go and we anticipate that he will in time work to follow the bubbles and eventually learn to blow bubbles for himself.  The practice of blowing will help strengthen mouth and facial muscles and in turn help with his language development and speech therapy.
 Everyone reads with Addison, as we always have with all our babies.  This week we began working with flashcards of colors and the alphabet.  Shortly we will be adding words, as well.  Addison LOVES doing flashcards.  Which doesn't surprise me much because he loves to look at books, too.  Again, this is just another way to keep his brain stimulated.
 Carmella loves to do flashcards with Addison.  So therapy time is a two for one kind of deal.
We could go way in depth with Addison's therapy but we want to give him time to be a baby.  We try to incorporate things that are both helpful to his development and fun for a little guy.  Addison is perfectly content to sit around observing life around him but we try to utilize most of his waking time with interaction that will keep his body working and his mind stimulated.

January 21, 2014

I Couldn't Love You More

In the night 
He is with you 
At morning light 
He is with You 
Do not fear 
For He is with you 
When I'm not here 
He is with you 

I couldn't love you more 
I couldn't love you more 
No, I couldn't love you more 
But somebody does 
Jesus 

Rest your eyes 
He is with you 
I pray you find 
He is with you 
When I let go 
He is with you 
And I can know 
That He is with you 

I couldn't love you more 
No, I couldn't love you more 
No, I couldn't love you more 
But somebody does 
Jesus 

You are mine for a moment 
But you are His Forever His 
And in this life I am holding You 
But in His arms you live 

I couldn't love you more 
No, I couldn't love you more 
No, I couldn't love you more 
Oh, but somebody does 
Jesus
~Matt Hammitt

January 17, 2014

Ophthalmology Evaluation

As I said yesterday, this was quite a week for Addison.  Traveling to and from Michigan over the weekend.  His first black tie event.  A trip to the Henry Ford.  A stop at the Flight 93 Memorial.   Physical therapy.  A day at children's for Audiology and ENT.  And today we spent the bulk of the day having his ophthalmology evaluation.

Since he was about a month old, we suspected he may be near sighted.  Because so many children with DS have some degree of eye issues, Dr. AL routinely orders an ophthalmology evaluation by one year.  She was not overly concerned about his vision at his 6 month check up and booking appointments with the pediatric ophthalmologist is an ordeal in itself.  We finally got an appointment scheduled for the middle of May.  Even though we thought something might be up, Addison tracks very well and locks onto faces and responds to books so we have just been waiting.

At his PT appointment on Wednesday his therapist said she thinks there may be something up with his vision because of the way Addison leans over toward the floor when sitting to play.  She said it is not his muscles, as his tone is really great right now and he has gained adequate strength that he sits very well on his own.

We called to see if we could move his appointment in a little.  The receptionist said there were no openings until June.  Then she came back a few minutes later and said actually there was a cancellation on Friday.  God is really good!  So away we went.

Addison was his usual agreeable self.  Even with his eyes dilated, he kept on smiling and "talking" to us.  And he was so good to keep his sunglasses on to protect his eyes from the sun while dilated. 
 Dr. JL was one more great doctor in the growing list of Addison's caregivers.  She wasn't just interested in Addison's eyes but in him as a person.  She wanted to know all about him and his team of caregivers.  We feel like God has put our boy in good hands.

The long and the short of eyes for Addison is that we were correct in suspecting he is near sighted.  He also has an astigmatism.

However, the good news it is a relatively balanced astigmatism.   Symmetry is often a problem for people with Down Syndrome. When talking eyes this can be serious in that the brain compensates by shutting down the weaker eye and allowing the stronger eye to do all the work.  Loss of vision can not be recovered if left un-diagnosed because the brain simply will not turn it back on.  We knew this from the get go and that is one reason Dr. AL routinely orders eye exams for all kids with T21.  For Addison one eye is a 2 and the other is a 3.  This can change over time but for now it is good place to be.

And the near sighted issue?  You learn something every single day!  As it turns out in Addison's case actually having the two problems is a good thing.  I am not going to even pretend to completely understand this but I did get enough of it to know it is good.

I will try to explain... There is a base number you aim for in eyes, right?  And the astigmatism gives him one number... I can't remember which was which but this is a for instance... so let's assume his astigmatism number was a 3.  And his nearsightedness number is a -3.  And let's assume the base number we are aiming for is a 0.  So if he was just nearsighted he would be far worse off.  Or if he just had an astigmatism he would be far worse off.  But because he has the two they actually work together to cancel out the affects, to some degree.  So his combined number would be around 0.

He still will see things wavy (astigmatism) and his vision will lack sharpness (nearsightedness) but to some degree these two conditions help to correct each other.  For those of you who don't have vision issues... I have a severe astigmatism and looking at the world without my special contacts is like looking at things through the bottom of a curved glass.  It makes you feel off balance.  His level of nearsighted makes things "unsharp" but not as fuzzy or blurry as it would be for those of us who wear corrective glasses.

At this point Dr. JL said she could put Addison in glasses if we wanted.  Because of the way his conditions are balanced she doesn't feel that we are at a point where his vision will interfere with his development and glasses would be cumbersome for our little guy.  We opted to forgo them at this point.  He will be reevaluated every six months to watch for decline in the quality of his vision, a growing in-balance between the two eyes or a developing in-balance between the two issues.

So in the long and short of it, Addison will need glasses, like all of us Wachters.  He will just need them sooner (between 14 and 24 months) instead of 8 to 10 years.  Just so you know, the kids think this is really cool because they feel glasses will seriously add to the Physicist demeanor.

Dr. JL summed up our meeting by saying she thinks Addison is doing phenomenal when compared to many of the children she treats with Ds.  She commented on his strong muscle tone and his efforts at communicating even though he hears little to nothing.  She also was very positive about how alert he is and the way he observes everything going on around him.
 
Our fellow is such a trooper and we are so proud of him.  We are so grateful to God for the way He continues to put his hand on Addison.  Thanks to all of you who continue to encourage us and pray for our walk.

It has been one crazy week here in Wachter world.  In addition to all of Henry's stuff... in the last 7 days we had a trip to the midwest and back, a kid fall from the attic through the kitchen ceiling, 6 kids joined the band and took up new instruments, Allen had a trip to Southern Virginia, Nathaniel and Allen had birthdays and we spent several days working on the Sweetheart Banquet for church.  None of which we could have managed without the Lord.

January 16, 2014

Addison Audiology & ENT Update

Addison has had an eventful week.  Part of me wants to say, "Poor Addison," but really I think this little fellow is so amazingly blessed!

To recap... You may remember we were having trouble getting the appointments recommended by Addison's geneticist for him to be evaluated by the audiologist and ENT at Children's hospital.  The earliest appointment we could get as of October wouldn't be until June 2014.  Henry's service coordinator at Infants and Toddlers recommended and made arrangements for him to be tested here in Frederick.  (Blessing 1) Two days before Thanksgiving we learned Addison is completely deaf in his left hear.  At that time he had full hearing in his right ear.  The opinion of the Audiologist here in Frederick and our pediatrician was to wait and see if the fluid resolved itself since there were no signs of infection at the time.  Addison has remained infection free since then. (Blessing 2)  Dr. L was not comfortable with waiting to see if the fluid cleared.  She expedited the appointment process at Children's Hospital to get us in with Dr. S, ENT and Dr. L, Audiologist.  (Blessing 3)

Since December we have seen a concerning decrease in Addison's progress on all fronts.  As you know he was ill with a stomach bug over the Christmas holiday.  It took more than 2 weeks for him to fully recover and we chalked his lack of progress up to the illness.

However, it seems there may be other issues at play.

We spent today at Children's hospital meeting with Dr. L and S.  (Blessings 4 and 5)  These two, as well as their entire staff, were phenomenal.  They apologized for the trouble getting appointments and told us how inexcusable it is.  Dr. S told us to email him directly in the future so we don't have to mess with the scheduling issues again.  Both Dr. S and Dr. L knew their stuff.  They spoke with us, and with Addison, clearly and with kindness and patience.  They answered our questions and inquired about our family.  Again, we were floored by the level of care we encounter through Children's.  This is such an answer to prayer, as we had strong reservations about going to Children's at all.  (Blessing 6)

What we learned today is at this point not only has Addison's condition not improved, but he has profound hearing loss in both ears.  To sum it up simply, he is deaf.  However, there is no permanent damage at this time.  That means, Addison CAN NOT HEAR but he has the POTENTIAL to hear.  (Blessing 7)  Unfortunately, he has lost 2 + months of critical language development.  But fortunately, we have the knowledge to help him, a plan is in place, and we are working on the process.

As we suspected he would, Dr. S recommended immediate surgery to drain the fluid in Addison's ears and insert tubes to allow the fluid to drain in the future.  Pending insurance approval (which we do not believe will be an issue) and scheduling we hope to have this done as early as next week but definitely by this time next month.
The nitty gritty... because of the construction of the ear in people with down syndrome, sometimes the procedure is impossible to do.  We feel confident in knowing that Dr. S is the best doctor in our region.   He treats many children with Down Syndrome so if anyone can do it, he is the one.  These tubes are only a temporary fix and will most likely need to be replaced 2-6 times (every 6-12 months) before Addison is over the hump.  The down side to that scarring caused by repeated incision into the ear causes scar tissue that can in itself cause permanent hearing loss.  This is compounded in people with Down Syndrome, who have a difficult time healing to begin with. (Note stomach bug took out our other kids for 1-3 days and Addison was sick for more than 14.)  Dr. S feels that Addison's case is worth the risk, at least for the first set of tubes.  We will take each set step by step and evaluate whether or not it is advisable to repeat the procedure in the future.            

How can you pray?

* For easy approval process with the insurance company.
* To get surgery scheduled next week when Allen is not due to travel.
* That Dr. S will be able to do the procedure
* That Addison will do well under anesthesia (both Brianna and I have had adverse response to anesthesia)
* That this will reverse the problem and keep the ears clear of fluid
* That his hearing will return to normal after the procedure (he will be retested at 4 weeks post op)
* That his speech will recover and catch up once he can hear
* That this will not need to be repeated in the future
Once again, we are struck by the level of care God has given to Addison.  From our insurance to his therapists to his coordinators and social workers and by the amazing doctors we have worked with.  Not all children are blessed with the level of care that has allowed Addison to do so well up to this point.  I would ask that while you think of Addison you also pray for the many children who are held back because they do not have the ability to pay or because they do not live in an area with programs as good as those we have access to.

Until next time,

Kat

January 15, 2014

Twelve

THIS BOY

IS

 TWELVE

And we celebrated

 the British way

 Who knew we had so many British things around the house?
 The girls once again outdid themselves
 by pulling a theme
 and running with it
 The flag on this cake became a bow tie for the birthday boy
 Even the streamers resembled the Union Jack
Bet you didn't know they make Union Jack Duck Tape?
Nathaniel has grown so much this last year!  
He is not just taller, but he is wiser.  He is kinder.  He is gentler.  We have seen the Lord really strengthen and grow him in twelve months.

He studies his Bible each day.  He likes to work with wood and loves Legos.  This year he is working on developing his art and he would like to take up an instrument.  Nathaniel loves to read just about anything but especially G.A. Henty and Peanuts comics. He is very interested in maps, geography and flags.  He is particularly good at cooking and helping fix things around the house.
:

"I will keep thy statutes: O forsake me not utterly. 9 Wherewithal shall a young man cleanse his way? by taking heed thereto according to thy word. 10 With my whole heart have I sought thee: O let me not wander from thy commandments."  Psalm 119:8-10

January 14, 2014

Raatikkas

The whole point of our trip to Michigan was to attend the wedding of our sweet friend, Julianne.  

Even though we have known her for much longer, it seems inadequate to say we attended Julianne's wedding.  The truth is since she and Brandon have been a couple, we have come to love him just as dearly.  And as is the case with any good couple brought together by God, it is no longer possible to see them as separate entities. 
The boys adore Brandon.  Not just because he took the time on his wedding day to bring them his favorite child hood car.  But they were really excited by that.  This guy is going to make one fabulous father.  

It was truly an honor to be a part of this momentous occasion.  Since Brandon and Julianne have been together, just about 15 months now, they have already grown into a strong team that seeks to glorify God in all that they do.  The intentional way they developed their relationship to make sure all they do is centered around God is such a blessing to this mama of many young people to soon be making their way to the marriage altar.  It can be done, even if it doesn't happen very often.

Disclaimer:  I have very few decent photos of this event.  You remember the camera that got dropped in the ocean and left in the thrift store?  Well, Allen decided it was time to retire it.  For our anniversary he gave me a beautiful new camera.  I made sure I had plenty of card space.  I packed the extra batteries.  I packed the battery charger.  And I was even learning some of the new settings.  And as we were leaving our hotel for the wedding I went to take a picture while juggling my umbrella and bag.  The camera went flying out of my hand and landed, lens side down, with a loud thug on the floor.  Now the lens won't operate.  Allen was very smart.  After the ocean thing, he took out an idiot proof warranty.  But I was still stuck without my camera for the remainder of the trip.

I did get a few photos of everyone dressed up before the old camera went kaput.
 This was Addison's first black tie event.  Kaitlin and A Stitch In Lives made sure all the fellow were outfitted properly.
A little grumping... it's impossible to find a formal dress suitable for nursing mothers.  I ended up settling on a nice blouse and this cut away style jacket, which I am in love with.  And speaking of love... I just love a man in a tuxedo.  Especially, when that man happens to be mine.

This was the most beautiful marriage ceremony we've ever attended.  It wasn't elaborate.  In fact, some may call it understated.  But the focus was so much on Christ.  It was clear to anyone in the church that day that this couple knew God brought them together and that it isn't for their own benefit.
For days Carmella kept saying she was going to see Julianne in her Princess dress.  But when Julianne called to Carmella to come to her, she took one look at Brandon and was afraid to go.  Brandon must have forgotten about the Swedish Fish trick!  But Sam was happy to step up in her place and discuss stretch Hummers with the groom.

There were lots of firsts on this trip.  Not the least being Elisabeth's and Carmella's first time staying with a babysitter who wasn't family, or like family.
When plans changed, literally at the last minute, we were so thankful for these two friends of the bride who jumped right in to stay with our little Princesses during the reception.  I was very nervous about what Carmella would do considering she is terrified of strangers.  But we've been working with her and we talked it up really big.  These veteran sitters showed up with arms full of toys and the night went off without a hitch.
Sunday morning they were excited to wake up to the favors and centerpieces Julianne sent from the reception.
 And speaking of the reception... The party was held at the Henry Ford and it was simply beautiful...
... and delicious

I was trying to get a photo of Addison and Sam and I think this face Henry made was absolutely hilarious.
 Well, that is better.  Speaking of Henry, he was the subject of many hugs, lots of talk and plenty of pinches.  At one point, the lovely bride made off with him.
 Okay, and our server.  Julianne, just so you know, the service was amazing.  Late in the evening, when I went to nurse Addison, Christina came to find me and brought me a glass of water and Emma (who was keeping me company) a piece of cake and a cup of coffee.  
 This photo has a pretty special story.  One of the first Henry Owls to be sold was for this little guys baby  shower.  His mother, Jess, was the Matron of Honor.  He made his way into the world 7 1/2 weeks ago  and his parents decided to name him Henry.  Kaitlin was excited to meet this little guy.
After two long days, by 10:00 that night
 we didn't have energy for much more than collapsing in the lobby while Allen brought the car around.
Poor Aedan looked like he was going to fall asleep before we even got to the car.  But doesn't he look handsome?

I leave you with many blessings for the newly weds.  We look forward to seeing what the future will hold for the two of you and those twelve kids!!!