Long Overdue Updates

I haven’t posted anything in a while because honestly, there hasn’t been a lot to post that seems ‘blog-worthy’…it’s all more Facebook-worthy. But, since I know a few readers are not also Facebook friends, I thought I would post a quick update on our family.

First, Alayna did have a cardiology update August 27th. Absolutely no new news to report there. She did really well for EKG…well, as good as a 1 year old will do having stickers and wires all hooked up to her. I got a few pictures, but only a few because I needed to help hold her hands so she didn’t pull them off, and her feet so the stickers/wires didn’t fall off, and just her body in general because the girl is super wiggly.

After the test we got the all clear and they opted, again, to skip the ECHO. She will not need to be seen again for a year. Yes, you read that right, a full year. Happy days!

 photo 1 photo 2 photo 3

Late September both Jessica and Alayna both had their routine checkups with their pediatrician.

Jessica’s Stats – 3 year appt: 25 lbs (3rd percentile), 36” (25th percentile)

Alayna’s Stats – 15 month appt: 22 lbs (63rd percentile), 33” (95th percentile)

Did you catch it? Alayna is 3” shorter and 3 lbs lighter than Jessica…and just so happens to be 21 months younger.

Today I had an ultrasound for Johnathan (yes, I haven’t told you his name already, it is Johnathan David Karel…Johnathan after daddy and David after his grand-daddy…and yes, I do mean to spell it that way). Anyway, I’m 38 weeks already (wow, where does the time go?) and they were determining how big he is and when they would induce if I didn’t go into labor prior on my own. Alayna was too big and got stuck, so they don’t want that happening again. Currently he is about 7 lbs 6 oz, about the 60th percentile for my October 24th due date. Not big enough to talk inducing early, but big enough for my doc to say that they will at least induce at/around my due date if he doesn’t come on his own sooner. So, I guess we’ll just have to be patient.

What else have we been up to? Jessica started ballet/tap this year. She was essentially kicked out of her first class after being told she is very sweet, but just too young. We have since found another class at a different studio and she is doing fabulously well in it. She LOVES her tap shoes and dances around the house and constantly asks to put on her ‘dancing dress’. She is so full of energy she just makes me smile.

Jessica also started Cubbies (AWANA) this year! This is something that truly melts my heart. I have such fond memories of all my years in AWANA. I was so excited to find that she was to start this year (two years prior to Kindergarten). She is the youngest in her Cubbies class and does struggle to pay attention a bit, but she does love to learn and be with the other kids. I’m sure she’ll get better as she learns how to be in class, too, as this is really her most structured (and longest structured) thing she’s done so far.

We are in the process of switching all of our bedrooms right now. Tim just built Jessica a castle princess bed (I’ll post more on that later). Alayna will move into Jessica’s room and Johnathan will be in the nursery upstairs (where Alayna is now).

Alayna, as I mentioned earlier, is 16 months old now (almost 17!), and her personality is coming out more and more every day. She is VERY strong-willed, but has a tender heart. She is a mommy’s girl through and through and breaks down in tears when I leave her…breaks down in an absolute temper tantrum if I’m around and not giving her the attention she feels she deserves. That should be fun when Johnathan comes along (oh help us all). In spite of being a ‘second child’ she has all sorts of words that she says/uses all the time. Apparently second children develop their motor skills early and language skills late. Well, nobody told Alayna this and she’s ahead in both categories. Like her sister, she loves to be outside, especially at the beach. She also loves animals (stuffed and real) and is starting to love books. She’ll sit on my lap and listen to me read short books far longer than Jessica did at her age…and even longer than Jessica often does now. I suspect, though, that this is also due to her desire to just always be by mommy.

Alayna is also getting over a double ear infection. We are so thankful that she hasn’t had the ear problems that Jessica did, but this time when we brought her in ‘just to make sure’ she had a pretty bad infection in both ears. Poor baby. She is doing better, though. We’re thankful for modern medicine (when we can actually get her to take it) and Mickey Mouse.

Johnathan is just hanging out waiting for the time when he’ll grace us with his presence, which based on my previous notes about the ultrasound doesn’t seem to be anytime really soon, but soon enough. He doesn’t move around nearly as much as Alayna, but Alayna was pretty crazy, so she’s a tough act to follow. I’m so excited to meet him and be a mommy to a little boy, though at times it seems so surreal still that I just cannot fathom having another child…and a boy at that. I often sit back in wonder at the amazing blessings that God has heaped on us. That’s about the time those amazing blessings start screaming and fighting or climbing all over me. Never a dull moment and I wouldn’t want it any other way.

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Lantern

This week I made a pretty powerful and surprising assertion on my Facebook page. I had shared a picture about congenital heart defects that said “My child is 1 in 100…to me she’s also 1 in 1 billion. I wouldn’t trade her for anything.” Cute, right? It got me thinking seriously, though…would I trade Alayna for “anything”? Of course I wouldn’t trade HER for anything, but what if I could have her and just change her heart and give her a totally healthy (formed ‘correctly’) heart, would I? Oh, that is a much more difficult question. The parent in me immediately said “Yes, of course, I would prefer her to have a totally healthy heart.” But then I thought about it. After all my worrying about what life will look like with a child with a special heart I asked myself for the first time, what would my life look like if she didn’t have a special heart? More importantly, would I choose a different path than the one God has set us on?

I was taken back at that small voice inside of me that said “No”.

No? Are you sure? What if…

“No!”

But…

“NO!”

Yes, I had a bit of an argument with myself, but it was quickly resolved. Truly – no, I would not change anything about Alayna, special heart and all. Wow. Why? I have no idea, I’m a bit baffled myself. Lol

Ok, fine, I do have reasons.

First, let me back up. In the not-so-distant past I made a comment that I truly meant. After my miscarriages I blatantly (and unashamedly) said that I didn’t care the reason why God allowed it to happen, that no reason was ‘good enough’ to warrant God giving me a child that He had no intention of growing. I said that I pictured me sitting with God and as He laid out His brilliant plan for my life in an effort to get me to ‘understand’ how important my suffering was, all I could imagine was responding with “Yeah, but I don’t care…you don’t mess with the life of my child no matter what you’re trying to accomplish in/through me.” I meant it, too. This was a very difficult time in my life. Not only was I suffering what I felt was a horrible injustice (not being able to get pregnant), I was mourning the loss of two babies who were born in Heaven…and mourning the loss of the life that I had planned for myself.

I’ve come a long way since that time. I’ve gone through some spiritual healing and have slowly been learning what it means to trust God with our family again (or even for the first time). Alayna has now become a very visible symbol of that constant trust in God. There is so much uncertainty that surrounds her condition. We have no idea what her future holds. While this is true of any child, any family, it is so much more evident on a daily basis with ours. She is a constant reminder that God has promised a lamp unto our feet and a light unto our path. We have not been promised a lamp post (or ‘better’ yet, a sunshine) to light up the whole path, but we have been promised that God will guide each step with enough light for us to take it in confidence. We will be doing this our entire lives with each EKG, each echo, each new development in her amazing life. I so easily stray. I plan my own path and consult God very little, assuming naively that ‘He would never allow me a desire He wasn’t going to fulfill.’ I have often thought that I was ‘so close to God’ that my will was synonymous with His will, that my desires were only there because He gave them to me. I figured this must be true so long as none of those desires went AGAINST what God said was ‘good’. The Bible was the compass and as long as the Bible said it was okay and I wanted it, then it must be God’s plan. Oh how the high and mighty fall.

So, would I change anything about Alayna? Would I trade this path that God has set us on…this dark path with a very little light that only shows our next step and gives no indication of what the far future holds? I don’t know how to describe how freeing it is to realize that I would not. I am finally at a point where I can say that I do believe that His ways are better than my ways…that this path, wherever it leads, is what is best. To be abundantly clear, I am saying that I prefer God’s path over my own and I would not change anything about it. This was easy when the two paths seemed to always line up. This conclusion was much more painstakingly difficult as it has become apparent that the two paths are not parallel and that one must be abandoned altogether. This is me, officially giving up mine, opting for His…and not just out of Christian obligation, but with joy knowing that His, while more uncertain, is definitely the better path.

So, yes, all that from one little Facebook picture. Go figure. God is so weird.

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Beyond Blessed

I sat down on our couch last night and just cried.  I cried because of everything we’ve been through.  I cried because of the great news we got about Alayna (news I’m praying we continue to hear well into her old age).  I cried because I just know how badly I fell into my anger and how many blessings we’ve been showered with in spite of that rebellion.

And this probably had something to do with it, too…
Click Here and then play the video
(trust me, it’s worth the wait for it to load)

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Alayna’s 9 Month Check Up

Alayna did so good today for her 9 month check up!  We started with simple things like weight and height…and then blood pressure.  I braced myself for the crying fit that would ensue as the cuff inflated…only to find Alayna completely unphased by it.  Whew, crisis #1 averted.

Blood pressure

Next was the EKG.  So many stickers to place and so many wires to hook up.  Good thing we were down this road before at her 3 month check up.  Knowing full well the wiggle monster that would emerge, I grabbed her hands as the nurse requested and braced to hold her down…only to find that Alayna was apparently too stunned at what was going on to even try to move.  She sat perfectly still (unlike her 3 month appointment) and we got a good reading the first try (I think it took 3 or 4 tries last time).  Whew, crisis #2 averted.

EKG
Such a big brave girl! 

Oooh, are those stickers??

All done

Next we waited for crisis #3 – the echo.  The registering nurse came in to explain to us the billing details and said a tech should come in shortly to take her to her echo.  When the door opened we were surprised to see her cardiologist instead of a tech.  I guess he just wanted to go over some things with us now vs later.  No biggie.  He had Alayna’s EKG results and explained that they definitely weren’t normal for a normal heart but that they were perfectly normal for her heart.  He went over a few things like

  • Yes, she still has a murmur, but not a concerning murmur
  • She did not have a VSD and that isn’t something that would ‘develop’, so no concerns there
  • She didn’t have pulmonary stenosis before and, again, that isn’t something that would develop
  • She did/does have an ASD (hole between the top chambers of her heart), but that it was not concerning before and if it was concerning now that we’d see changes on her EKG or have concerns about her developmentally, with her breathing or eating, etc.  Since she’s doing so well there and her EKG looked good then there is no reason to be concerned about the ASD now.
  • She does not have irregular valves (many times the tricuspid valve has abnormalities with this condition) and if anything had changed with that then we’d see it on the EKG.  So, again, no concerns there.
  • Many times people develop heart block with this condition and that is something that can develop over time.  However, if that develops then we would first see it on the EKG, which as discussed, looked great.  So, last potential concern was quickly dismissed, too. 

We even talked about the double switch surgery and he assured me (again) that even though there are a few doctors out there would still do the surgery even without a single related defect or sign of heart failure, that a majority of doctors (including Dr Bove at UoM) wouldn’t even consider touching her since she is the rarest of the rare with absolutely no related defects.  He talked about how we have no way of knowing how many people have Alayna’s exact condition (L-TGA with no related defects) let alone what percentage of them who end up having problems vs never ending up having problems simple because there may be people walking around with the condition and would NEVER know about it because they never experience any problems.  So, the short of it is that if she develops problems then we’ll know well ahead of time because she’ll be monitored…but that she may very well never end up having problems.  Only God knows and we just keep praying for the latter.

Eval

After all of that we figured he’d say the echo tech would be in shortly…but surprised us by saying that there really wasn’t a need to do an echo today because anything new that would be detected on the echo would have first been indicated on the EKG.  Since her EKG was perfect (for her), no reason to do the echo.  Yay – crisis #3 averted.

All in all, a fantastic check up.  Alayna did WAY better than we thought she would (sat better for testing than she does for a diaper change) and her results were A++++.  We’re thrilled to pieces and praising God for our miracle.  He continues to bless us far beyond what we could have asked for or imagined.

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The Rest of the Story…

I had the privilege of sharing a bit of my story tonight at a ladies weekend ‘retreat’ at our church.  I was asked a few days ago if I’d be willing to share a bit about my story for a few minutes and I was thrilled since nobody really knows me and I don’t really know anyone else…and well, if you read my blog I’m probably about the most transparent person on the planet.  So, I thought and thought and thought about what I wanted to share and I came up with something that was WAAAAAY too long to share.  So, I parsed it down, cut out huge chunks and basically only shared a fraction of my story.  So, since I already invested all the time into thinking about so much for of that story, I thought I would share it here.  Lucky you!

My name is Annie Karel and I, in typical Baptist fashion, was raised in a Christian home, saved at a young age and baptized as a teenager.  Unlike some, though, I never really rebelled and honestly found the Christian life do’s and do not’s pretty easy.  I went to church, was eagerly and excitedly involved in ministry, and enjoyed how my whole life was wrapped up in said ministry.  I married my best friend at the ripe old age of 19 and we began our happily ever after.  But somewhere along the line I just simply got tired.  I was tired of re-committing to God to give Him more of my time…after all, I was very very busy going about His work.  So tired, in fact, that I simply gave up trying.  No, I didn’t rebel and stop the do’s and do not’s – like I said, that was the easy part for me.  I was really great at living FOR God, I was just really bad at living WITH God.  So, I marched on and the further I marched the further away from God I continued to feel.  I knew I had a problem, but I, for the life of me had no idea how it happened or how to fix it…I couldn’t even really put it into words.  And then I read a book called Running on Empty: Contemplative Spirituality for Overachievers by Fil Anderson.  The title itself intrigued me because I was just simply tired and seriously running on empty.  As I began reading I had to stop myself from highlighting practically every sentence that described my life so perfectly.  I learned that my problem wasn’t a new one and how it was actually quite common for those who were raised in a Christian home.  As I began to seek the wisdom of many of my spiritual mentors, a question continued to resound loudly in my head – can I disappoint God?  Of course the answer kept coming back as “of course you can disappoint God”.  After all, we’ve been taught since we were little how we manipulate God’s feelings toward us by our actions – do this right and he’s happy with you, do that wrong and he’s mad.  I knew in my head that God loved me, but I seriously doubted that He liked me very much with all the things I had done that didn’t live up to His high expectations.  I continued to ask my question to countless people, all with the same answers until one gave me a different answer.  Exactly one person looked at me like I had 3 heads and said “of course you cannot disappoint God.  Disappointment implies He expected a different outcome.”  He encouraged me to read Grace Walk by Steve McVey.  As I dug into the book and my Bible I began to see something that had been in front of me my whole life, but that I had somewhat missed.  Yes, God’s love is unchanging…but what did that REALLY mean?  What I already knew was that no amount of bad would make him love me less, but just as importantly, no amount of good could make Him love me more.  No, God’s emotions were not constantly being swayed by my good and bad actions, He was just simply crazy about me no matter what.  Why? Because I was His child.  Furthermore, God wasn’t seeing me through rose colored glasses – I found a renewed strength in the reality of my old life being dead and truly having been given a new life.  I wasn’t still this dirty sinner simply covered in grace, I was a whole new person – the old was truly dead and not just covered up.  Having been raised in the church my whole life I never imagined going through such an astounding change in my spiritual word view.

I would love to say that my life has been roses since that time, but as with every chapter in our life, these things always seem to just lead into new chapters.  After we had been married about 4 years we decided it would be ok if we finally had our ‘oops child’.  I would laugh at how I always said that we would probably never decide to have kids, but that we were both hoping for our oops.  Well, a year or so of no “oops” and we started actually trying….but to our astonishment, nothing happened.  After a year of trying we sought help.  And finally, 2 years after we started our journey with a fertility specialist we were pregnant.  We were ecstatic.  We were broke, but ecstatic.  I remember going to my mother-in-laws house shortly after we found out and telling her.  We cautioned her that we weren’t telling anyone just yet, and to keep it a secret.  She looked me in the eyes with tears in her own and said “Annie, you guys have waited and prayed for so long – God would never let anything happen to this child.”  I knew she was right.  God would never give me a child that I wanted so badly only to take him or her away.  A month later we went in for our second ultrasound.  I was 8 weeks and we were anxious to see our baby’s heartbeat.  As soon as the exam began I knew there was a problem.  The doctor turned the screen so he could see better…and he was deafeningly quite.  Our baby hadn’t made it, and it was the absolute hardest day that I have ever experienced.  It took us almost a year to get pregnant again.  I remember sitting at home the day after our first blood test and crying and begging God to protect that child.  I went in the next day for another blood test and when we got the results back we were told it didn’t look good.  I miscarried a few days later.  I was furious…and not just that I couldn’t get and hold a pregnancy – I was furious with God.  In His infinite power why would He do this to me?  He had the ability to step in on my behalf, on our baby’s behalf, and did not.  The Bible says that children are a gift, a blessing, and I couldn’t imagine why God apparently found us so unworthy of what we consider His most precious and cherished earthly gifts.  I was heartbroken, I felt betrayed, and I was downright angry as I fell into a very deep and dark valley in my life.  I knew I would come out of it, and thankfully I had already had my first spiritual awakening during my college years that assured me that no matter what, God was not going to just let me go.  I knew that one day I would be ok, but I had no interest in expediting the arrival of that ‘one day.’

One day while at our fertility specialist’s office I saw something about an infertility conference put on by Bethany Christian Services.  I mentioned it to my husband and he, surprisingly, thought it was a great idea.  At that point he really was just desperate to have his wife back.  So, we went…and lo and behold, God began to work a miracle in my life that I just didn’t see coming.  The speaker mentioned a verse that basically said that the writer was too angry to even talk with God.  Of course that struck a chord with me because at the time the only conversations I was having with God were “I’m still mad and not talking with you”.  Being convinced that she was taking something out of context, the Awana girl in me kicked in (or probably more accurately the Holy Spirit) and I wanted to look it up.  It was in Psalm 77.  As I read through the Psalm my heart began to soften as it talked about the ‘former days’ when God was so close.  In the margins I had written a note about when how God seems so far away that I must remember all the great things He has done.  In one big flood I realized how quickly I had abandoned the loving God who had truly taken care of me my entire life.  Up until this point there really hadn’t been any major heartbreaks in my life.  God had sheltered and cared for me so long, protected me from so many of life’s hurts, and yet the one time that He didn’t give me what I wanted, I basically threw a little 2 year old fit…and I knew I was wrong.  I won’t say that I was healed overnight nor that I’m even healed completely today, but my world changed that night and I let go of my anger and slowly let God back into my life. 

A few months later we found out we were pregnant again.  I was a nervous wreck for the entire pregnancy, but 9 months later I delivered our beautiful daughter Jessica.  She was perfect…and I asked my fertility specialist a week later when we could have another one.  Almost a year later we started treatments again and miraculously found ourselves pregnant after only our second cycle.  Of course, again, though – God continued to work.  At our 21 week ultrasound we were so excited to find out we were having another girl.  That excitement quickly turned to anxiety, though, as the ultrasound tech started getting less chatty and continued to tell me to roll this way, then that way, and say how she was just trying to ‘get the right angle’ of our baby’s heart.  We knew there was a problem…I’ve had one of these ultrasounds before.  The test finished and we were sent to the waiting room.  It seemed like forever before we were called back.  As the doctor walked in I knew there was a problem…a big problem.  He wasn’t making much eye contact and he talked about how this looked good and that looked good…and finally I blurted out “what is wrong with her heart”.  With a big sigh, he switched gears.  Yes, there was a problem.  He didn’t know the extent, but there was definitely a problem and we would be scheduled for a fetal echo in a few days.  I burst into tears as I recall him saying things like “doctor’s can do amazing things now days” but all I heard was that we were going to lose another baby.  As we drove home the first song I heard on the radio was the “No Matter What” song by Karri Roberts.  I will say that the upbeat nature of the song was not at all how I felt, but the words drove deep into my soul and I resolved that I would, indeed, trust and love God no matter the outcome.  Over the next weeks we received a battery of tests, changing diagnosis’, and discussed birth locations and plans.  Most of all, though, we and countless others just prayed like crazy.  In a nutshell, she has a very special heart that may not do so well at ‘some point’.  It is so rare that there really is no way of knowing when that ‘some point’ would be, but that she probably wouldn’t have any trouble when she was first born…unless of course she started going into heart failure before she was born.  So, week after week I would go in to check up on our little baby girl and week after week was told she’s still doing great.  When it came time for her to be born, I was again, a complete nervous wreck. But, her birth went basically without incident (she did get a little stuck, but that didn’t have anything to do with her heart).  We got to cuddle her for a few moments and then she was whisked away for a battery of tests.  A few hours later she returned to us and shortly after that the man who would become her cardiologist for the foreseeable future joined us to share his findings.  He talked about how impressed he was that she not only received the correct diagnosis before birth, but that her defect was caught at all.  He explained her condition, all the defects that normally accompany it (none of which she actually has) and what the plan was going forward…and all I heard was “treat her like a normal newborn.” 

This was almost 9 months ago and in addition to the changes happening in our immediate family, our church family has also changed.  While I was still pregnant, things began to quickly and ferociously unravel in the church we’ve called home for the past decade.  My husband had transitioned from youth pastor to pastor over the year prior and so many things were going well – people were getting saved and baptized and growing in God.  But, we knew a storm was coming.  I won’t go into too much detail, but decisions were made and it was time for us to step down.  We were left heartbroken and feeling abandoned by those who were our family for so many years.  At the same time, though, we were kind of excited to have the opportunity to find a church family closer to our home.  We went to just about every Baptist church around here (and there are a lot of them).  After a lot of searching and prayer, we felt God constantly leading us back here to Kent City and decided that while we weren’t sure what God had in store for us long term, that this is where we’d be landing and calling home.

In the end, I look back in awe of everything that God has brought me through and how it has prepared me for what He has in store for me next.  Each stage of my spiritual walk has had a purpose and in some way has helped me deal with what life would bring me next.  I won’t lie – it has been a really really hard past 7 years or so…but we’ve been really really blessed with two beautiful daughters and are excited to see what God has in store for us next.  Beyond all of the lessons about trusting God and His plan, being patient and giving Him control, what I am most thankful for is His unconditional love for me.  I am thankful that He didn’t give up on me and that, in spite of my unfaithfulness, granted us two beautiful little miracles.  I used to ask what I did to deserve this, thinking how I deserved so much better after all my faithful years of service.  I now ask the same question, but with the understanding of just how undeserving I am.  I did nothing to deserve His blessings, but out of His pure and unconditional love, He has blessed us far more than we could have imagined.

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Faith’s Angels Paper Hearts

Heart Cover Page_1:23:13

We are so excited to announce that we (as in our family, through our photography company) are participating in the Faith’s Angels Paper Hearts Campaign!

Faith’s Angels Inc. is a 501c3 non-profit located in west Michigan. Its mission is to raise awareness for congenital heart disease (CHD), educate people to the facts involving CHDs and raise funds for medical research to help aid in the quality of life for children born with CHDs – and their Paper Hearts Campaign does all of those things!

Since this cause is obviously very near and dear to our hearts, we wanted to participate. However, we weren’t sure how considering we don’t have a store for people to come to for purchasing hearts (unless you count our home) nor do we have a big store window to display the purchased hearts. So, I contacted the organization, worked out a few details and we are officially participating digitally by changing our cover photo on Facebook to a white backdrop and then adding digital ‘paper’ hearts to it as we get donations.

You can purchase a heart for only a $1. If you’d like to participate, I am collecting dollars via cash or PayPal through Valentine’s Day (when the Paper Heart Campaign ends). Please see the instructions below for how to send money via PayPal.

We also encourage you to check out all the info info on Faith’s Angels website and Like their Facebook page!

PayPal Instructions:

Go to http://www.paypal.com and log in

  1. Select Send Money
  2. Enter our E-mail: asog@mac.com
  3. Enter the Amount ($1/heart)
  4. On the Personal Tab select “Gift”
  5. “Continue” will bring you to your final page that has an e-mail at the bottom – Change the subject to “Paper Hearts” and be sure to put the names for each of your hearts in the e-mail.
  6. Select “Send Money”
  7. If you haven’t already, go to the Faith’s Angels website and read some facts about CHD: http://www.faithsangels.org/CHDFacts.html

Note: this was also posted on our Facebook and our ASOG Photography blog!

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Alayna at One Month

Here are some of Alayna’s 1 month pictures.

This is about the only one we got of er looking toward the camera...

This is about the only one we got of er looking toward the camera…


...because she was REALLY tired.

…because she was REALLY tired.


So, we tried some on the floor, but to no avail.  Jessica through she'd be a helper and put her Alayna's pacifier in, though...such a good big sister.

So, we tried some on the floor, but to no avail. Jessica through she’d be a helper and put her Alayna’s pacifier in, though…such a good big sister.


So, we let her go to sleep.  She slept...

So, we let her go to sleep. She slept…


...and slept...

…and slept…


...and slept.

…and slept.

Better luck next month!

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