November 30, 2013

So Very Thankful

So you know Thanksgiving is my favorite holiday.  It is the only holiday lacking the nasty commercialism that surrounds our lives today.  Or at least it was until black Friday took over the day.  But don't get me started on that!  We look forward to the day with much gusto.  At the beginning of November we pull out our favorite Thanksgiving recipes and start planning our menu and guest list.  I have been using this same issue of Bon Appetit to prepare feasts for friends and family since 1994.  It is worn and taped and marked up.  There are gravy and cranberry stains.  Pulling it out is like opening the door to a dear old friend.  On the left is the November 2013 issue.  I love the tradition and I love to try new things in the kitchen so our menu is always a fushion of beloved favorites and new and daring.  This year I used the same smoked turkey but instead of fresh garden herbs we used a smoked chili rub.  

Allen had to travel most of November for various business meetings and a training conference.  The kids and I used some of the evenings he was gone to make these hand print turkey cards.  We sent some for invitations to Thanksgiving dinner and some were sent to lovds ones we are so grateful for.  There was so much glue holding all the hand prints on that the cards would not fold to go in the envelopes.  
This year we were looking forward to Thanksgiving more than ever.  First, because we have so much more to be thankful for.  Second, because of the very special guests who would be joining us.  Third, because last year the holidays just sort of drifted by in the blur that last year was.  

Winnie was in the spirit like no other could compare.  A friend brought her this shirt.  I put it in her drawer and forgot about it.  The next morning Mella was getting dress when she came running and screaming while waving it above her head and shouting, "CHICKEN SHIRT!"  She wore it every day since the last of October.  And in case you are wondering, she has paired it with every color of legging in his feathers.  This is definitely not an outfit I would have picked myself but the way she loves it made me love it.  I was sad to see her move into her Christmas sweater this morning.



She wore it every day since the last of October.  And in case you are wondering, she has paired it with every color of legging in his feathers.  This is definitely not an outfit I would have picked myself but the way she loves it made me love it.  I was sad to see her move into her Christmas sweater this morning.

November was a tough month.  Allen was away on travel in five different states and every one of the kids, with the exception of Addison, have been sick in that time.  Carmella has literally been sick for 31 days, first with Fifth's Disease and then with a seemingly endless cold.  There were lots of other things going on in there, including Sam's severe, and very unnerving, reaction to a vaccine.  We all kept up a good humor by looking forward to the long holiday weekend with family and friends.

And then came Tuesday.  My spirit was completely dashed when we learned about Addison's hearing issues and within the same hour realized that a snow storm would prevent Aunt Dawn from traveling to us on Wednesday.
But we cleaned and cooked and decorated and listed all we have to be thankful for.  Thursday morning dawned with a heart adjustment, clear skies and the Macy's parade. 
 Counting down our blessings began with the 22 loved ones gathered around our table.
 Every holiday the girls set a more beautiful table than the last.  The boys get in on the act now, too.  Nathaniel said he is going to go to Butler school.
 All good parties start with a fabulous drink and appetizers.  Brianna stirred up Cranberry Margarita's and the New England Express.
 These candied cranberries are my new passion.  My favorite way to serve them is with a nice brie.  The kids also made up a batch of my brother's famous stuffed mushrooms and Gram Millie's cheese balls.
If you have ever been a guest in my house, you know I am not above asking anyone and everyone to join in the cooking.  If you ask, I will also gladly accept your offer to bring part of the meal.  We had pie from Ohio, potatoes from Aberdeen and Pecan bars from Alexandria.  Gosia put the finishing touch on her glazed carrots as we all enjoyed appetizers.
 Even Miss Liz got in on the act.
 Allen's one official cooking duty every year is to carve the Thanksgiving turkey.
The new turkey recipe was a serious hit.  As were all the recipes contributed to the dinner.
But the greatest thing about the day were the people I love gathered together.  As we finished preparing dinner everyone gathered in the kitchen and hugged and kissed and swapped stories while we swapped recipes and tasted the good food.  Aunt Dawn arrived a few minutes before we took the turkey out of the oven and the day was complete.  

I think my heart broke about 20 times during the evening as I listened to the laughs and watched those I love mingle together in joy.  There is something incredibly fabulous about hearing a bunch of Italians talk about food while they are cooking and eating.  As Allen was carving the turkey and I was taking in the sounds and sights of all those around me I was overwhelmed by the Lord's goodness to fill our home with so much joy.  I absolutely love this photo because it captures exactly what I love best about those I love.  Cousin Joe teasing Nathaniel.  Gosia's infectious laugh.  Aunt Dawn's bear hugs.  And Steven burning his mouth on the stuffed mushrooms, even though I warned him several times that they would be hot inside.  
We had such a great mix of personalities there was no end to the stories, or the laughs.  As Dawn put it, "You know the most interesting people.... Secret Service Agents, FBI agents and Miss Liz."  Rolling on the floor laughing out loud at that comment.  We were so glad to also have cousin Christina and her friend, Jeff come up from Virginia.  Cousin Joe Jr. came from Arizona as well but somehow he managed to escape Brianna's camera.
There were also many nationalities represented.  My Cousin Rita, from Germany.



 My brother Frank and our Italian cousin Joe.
 Irena and Gosia from Poland.  This was the first time we met Gosia's mom.  Even though she doesn't speak English, she fit right in with the teasing and craziness of our Italian family. 
 Okay, so here were one of those... so thankful heart breaking moments... as I looked around the table at those gathered to celebrate God's goodness I had to choke back tears.  Ha!  and there I found a picture of Joe Jr. to my right,
After dinner we enjoyed a dessert buffet with more choices than I knew what to do with.  Nathaniel made a cherry pie and Aedan tried out a new recipe for Gingerbread Pumpkin Trifle.


 
The party went late into the evening... 

Joe Jr. and Steven gave the boys lots of pool pointers
Everyone took turns passing the baby around
The boys are really into their Bertie Wooster look right now.  I LOVED their bow ties and suspenders
Isaiah and Carmella spent hours playing with the play kitchen food
Many people took turns at the piano
So thankful to the Lord not just for his endless blessings upon my world.  So grateful for a God who will take a day set aside to offer thanks to Him and turn it into a day to bestow yet more goodness upon us.  

"That I may publish with the voice of thanksgiving, and tell of all they wondrous works."  Psalm 26:7





November 27, 2013

Audiology Evaluation

Anyone who says prayer doesn't work has no clue what they are talking about.  Since the first of November all our kids have been sick with runny nose, cough, sore throat, fever, rash... All but Addison.  Who has shown no signs of illness whatsoever.  God is good

As part of Henry's 6 month check up we had four action items.

1.  Check up with Cardiologist
2.  Followup with Geneticist
3. Audiology evaluation
4.  Check up with ophthalmologist

It seems simple enough but you couldn't guess how hard it has been to schedule these appointments!  Brianna spent 5 1/2 hours on the phone one day and only made two of the appointments.  The audiology and ophthalmology were booked up through May.  The May calendar isn't open yet.  And to make matters worse they informed us those appointments fill up so quickly that you have to call right when the calendar opens in order to schedule for the next six month period.  And they don't know when the calendar will open up.  You just have to call back every day to check.  When we asked about cancellations they said that they don't call a cancellation list.  You have to just call back every day and see if there are any openings.  How stupid is that?  

We have some concerns that Addison may be near sighted by the way he crosses his eyes when he is close to a toy or someone's face.  But we don't feel it is something we need to worry about right away.  We had no concerns about his hearing whatsoever.  We had a recommendation from a friend for an audiologist they worked with nearby.  I called to make an appointment the first week of November.  To be honest I was so completely put off by the secretary's bad attitude that I didn't feel comfortable entrusting Addison to their care, no matter how good the doctor might be.

With the difficulty making appointments we emailed his specialist and asked her if there were other Doctors outside of the Children's Hospital network she could recommend and how much should we stress getting these done on the time table she gave us.  The doctor never emailed back.  Which I thought was very odd because she usually gets back to us within minutes.  Literally, minutes.  

When Addison's physical therapist and service coordinator came for his 6 month evaluation we discussed the difficulty with getting appointments.  They suggested taking Addison to the Infants and Toddlers office for an audiology evaluation.  They usually don't do kids his age but they felt at least we could get a screening and know if there was a problem that needed more immediate attention.  His service coordinator scheduled an appointment for him.

And in the meantime, our doctor from Children's called while we were in Boston last week.  She was very upset because she had indeed emailed back right away.  The email bounced back to her and she never saw it until last Monday.  She had a recommendation for a good pediatric ophthalmologist here in our area but her message said nothing about the audiology.  Since our return from Boston was so close to his already scheduled appointment we decided to go ahead and see the audiologist at Infants and Toddlers.

And yet, in the meantime, last weekend I was playing with Addison and noticed he responded eagerly with laughs, squeals and smiles when he was looking at me, but quite by accident I noticed he made no response at all if he couldn't see me.  This was the very first time I had any questions about his hearing.  

Tuesday morning we went to Infants and Toddlers.  The audiologist is a completely lovely women.  16 years ago I sat in that same room with Brianna and also with Abby.  It was weird being back there now.  Actually, Brianna asked if she could go along for the evaluation because she has only faint memories of her time with Infants and Toddlers.  As is the case with all our services there, we spent more time filling out paper work than actually meeting or testing.
In the sound proof booth Addison responded beautifully to all sounds from the right side but gave no response on his left.  Mary Kay did two further tests.  One to check the function of the hairs in his ears and another to check the sort of "echo" response.  His right ear was perfect on both tests but his left gave no response and flat lined on both.  :(  There was no sign of obstruction like ear wax but she was hopeful that there might be fluid blocking sound.  Which could indicate temporary versus permanent deafness.  Addison laughed out loud when the right ear was tested, but cried as if in pain when the left ear was tested.  

It just so happens, we were already scheduled to go to the pediatrician for an appointment after we left the audiologist.  Mary Kay asked that we have them check for fluid in the ear.  She also recommended coming back at the end of January to retest the left ear.
At the doctor's office, Angela confirmed there is fluid in the left ear but no sign of infection.  She recommends returning in January to see if the fluid has resolved itself and concurs with Mary Kay to return to Infants and Toddlers on that same day to retest the left ear.

After we left the Doctor's office, before we even got home, Allen got a call from Children's Hospital wanting to schedule Addison's audiology evaluation in January.  It seems Addison's geneticist must have gotten in touch with them about the ridiculousness of making an appointment.  How do you like those apples?  

Addison's geneticist and I had some communication about how we should proceed with various audiology appointments now scheduled.  She recommends we bring Addison to Children's Hospital where they will do more in depth testing.  

So what does all this boil down to?  The first concern is that it is common for children with Down Syndrome to suffer hearing loss and even deafness from fluid in the ear.  The fact that he has no signs of infection is very positive.  However, there doesn't need to be infection for hearing loss when there is fluid causing an obstruction.  And at this time, when there is a huge period of language development, any disturbance in hearing can cause greater difficulty in speech development.

We saw with Brianna that her speech suffered severely because of her temporary hearing impairment, due to ongoing ear infections.  She didn't speak until she had surgery at about 18 months.  Literally, the day of her surgery, she began repeating words, and on evaluation a few months later, tested on par with her peers.

However, language and speech development are already likely to be issues for Addison.  If his speech is delayed, it is not expected that he would be able to just catch up as Brianna did.  On the bright side, since Henry does have perfect hearing in the other ear, we don't have to be overly concerned in the short term. 
So today, in the short and sweet, thank God that only one ear is affected.  Thank the Lord that we have a great therapy team who were so wise to work out another situation for testing.  Thank God for the audiologists willingness to see Addison even though he is technically out of her realm at this point.  Pray that the fluid will resolve itself between now and January.  Pray that he will not develop infection.  Pray that in January when we retest, we discover the flat line was caused by the fluid and not by permanent hearing loss in the left ear.    

November 1, 2013

The Right Words

I can not think of a time, prior to Addison's diagnosis, that I ever noticed someone in public with Down Syndrome.  Not that I was looking.  Actually, until a month before his birth, I had NEVER known anyone with Down Syndrome.  I had never given it much thought until recently, but now with my background in nursing, that seems weird to me.

Since Addison came into our lives, everywhere we go, we all notice people who have Ds.  For example, last week we took the kids to Lancaster to see the Sight and Sound production of Noah.  After the show, there was a huge crowd as people were heading one way leaving the first show and also people coming the opposite way for the second show.  We were all gathered in our group talking about what we loved and where we would eat dinner.  It was a little bit chilly and time for Addison to eat and I was all about moving quickly to Filmore, paying no mind to anyone outside of my kids.

And then I saw him.  I have no idea what drew my eyes from the side walk up to his face but I instantly recognized he has down syndrome.  Then I was struck by how tall he was.  At least, 5'10".  The average height of a man with Ds is less than 5'6".  Our entire interaction was only seconds as we passed each other going in opposite directions.  Over the rest of the evening, every single person in our group said to me, "Did you see the man with Down Syndrome?"

So it seems people with Down Syndrome are everywhere.  And I love that.  Not only is it counter-intuitive to the general belief of what people with Ds can and can not do, but it gives me hope that Addison will be out living life and having a grand old time of it.

But here's the thing that frustrates me.  When I see someone with Down Syndrome or a mother with a little one who has Ds I want to talk to them.  I want to learn about them.   I want to know what their triumphs and their struggles are.  I want to tell them how much better off the world is because their mother didn't abort them.  I want them to know I am grateful God made them.  And most of all, I want them to know all about their amazing creator and Savior.
Not long ago, I was in Walmart.  I saw a young man and his mother walking in front of me near the bread aisle.  From behind I instantly saw he had down syndrome.  I wanted so much to talk with this happy pair.  I even left Emma and my cart to follow them to the next aisle.  But as they rounded the corner, yet again, I stopped and let them go.  I as angry with myself and my light mood quickly disintegrated until I was almost in tears, right there next to the peanut butter and jelly.

And why?  It's because of this stupid thing called political correctness.  It's so hard to talk to anyone anymore because if we use the wrong word or terminology we will offend someone.  My black friends are now "African American"  people from Mexico are now "Hispanic" and I don't even know what we are supposed to call Homosexuals these days.

Lest you are mislead, it is not because of the message that I hesitate.  It is our common link.  It is because of down syndrome that I feel we have an open door and yet because of down syndrome I don't know how to speak the words in my heart.

As soon as Addison was born and I started researching Ds I quickly became aware that if you use certain words, phrases or terminology, you will offend a whole world of people.  Even if it is the proper terminology to begin with.  Despite the fact that it is a medical diagnosis, for example, don't ever refer to a child's learning disability as retarded.  And a person with down syndrome is disabled, not handicapped.  And whatever you do, don't call a baby with Ds a "Down's Baby".

And personally, I think that's stupid.  Raging a war on words as if they have some power.  It is not the words that matter but the heart and the attitude behind them.  Since Addison was born, many people we love dearly have used any and all of these terms to refer to our son.  And guess what?  I wasn't offended even in the smallest amount.  Because I know these people are speaking in love for me and for my boy.  But I am finding out I am the very rare exception.  There are entire websites devoted to what's wrong with the "R" word.  Don't believe me?  Google it.

But in the meantime, understand that in this place of special needs where we need community and a sharing of ideas more than anywhere else, we are politically correcting ourselves into a place of silence and impotence.
Why didn't I say to the mother at Target the other week that I think her toddler, with Ds, looked adorable in his little glasses? She was obviously having a hard time with 5 other children in tow and a cart full of groceries.  I am sure she could have used a bright smile and some encouragement.  I would have taken time to speak to any other mother, so why not this frazzled mama?  Because I don't know how to talk to her without risking offending her.  I have spent a lot of time thinking on the question.  Really, would I be upset if someone came up to me and said, "I see your beautiful baby has Ds.  My three year old has Ds, too."  No, I would be so grateful that someone took a minute to make a connection with me.  And down the road, when Addison is a teenager, would I be offended if a stranger came to me holding a newborn with ds and said, "I see your son has Ds."  No.  I would be glad to tell her how wonderful a journey it can be.  Yeah, I know we have a long way to go.  But, let's just imagine.
And yet, I stand silent.  Angry and kicking myself.  Staring after a young man struggling under an armload of wonder bread searching for the words to say and finding none.
Yesterday, after Addison's appointment at Children's, Allen and I stopped in the Lindt store to pick up some treats for the kids.  We filled our bag with truffles and I went to wait at the register.  There was a gentleman discussing Hazelnut truffles with the sales lady.  When he finished he turned around and took a look at the sleepy Henry who was snuggled in my arms.  "You've got a mighty fine baby there," he said.



Well, that made me smile as I looked up to meet the eyes of this kind stranger.  "Yes, I sure think so!"

And then, as if to make sure I understood, he went on to explain.  "I am a pediatrician.  And you can tell by
the bright eyes and the way he moves his hands."  I realized now that this man was much older and that he was not just referring to our amazing boy but also to down syndrome.  He elaborated just a little bit more, "He's doing well.  You don't usually see those things when they have... difficulties."

And that was it.  That's all he said.  I am not often speechless.  In fact, it is not uncommon for me to lose an hour standing in a store talking to a complete stranger.  But before I could  even say "thank you" he was gone.  And I was left to wonder if this man knew God had sent him to me.

Until Next Time,
Kat