Surprise!

James is done with exams.  It is a glorious thing.  On Thursday, he took his last one and then I came down to campus with the kids to celebrate with a little cook-out.  On Friday early in the morning, we went down to a Catholic Montessori school in Virginia to visit and observe.  It was a beautiful place and we all had a great time.  On our way back home, we picked up our friend Carly from the metro to have a baking day.  But, before we went home Carly needed to pick up some things from Trader Joe's.  We finally got home and were walking down our stairs when we heard people singing Christmas carols.  I thought to myself "Oh, that's sweet, Ryan and Jen (our neighbors upstairs) are having a caroling party).  Then I walked in our front door and saw a group of our good friends from school singing, our table covered with food, and our whole living space decorated with Christmas lights, paper snowflakes, pine cones, etc.  We were a bit overwhelmed with the sweetness of it all.  They said that since we will be spending Christmas away from our families they just wanted to bring some Christmas cheer to our home.

So, instead of a baking day, we had a party, complete with lots of food that I can eat (without eggs or dairy) including SOY NOG!  We had a good laugh over Carly's attempts to deceive us without lying, especially when I called and told her I was coming to pick her up about 40 minutes earlier than I had said before.  So, that's what the trip to Trader Joe's was about-- stalling.  Also, I realized that in rushing out the door for the Montessori school visit, we had left the place kind of messy-- a sink full of dishes, Lucy and Charlie clothes strewn about the floor... and so they just cleaned it all for us.  

I like our friends for many many reasons, but one of my favorite things about them is watching them play with our kids.  Honestly, I always wonder who is having a better time-- the kids or them?  This video says it all (I hope it plays).  Edit: blogger does not like to upload my videos so here is a link that will play a video of the kids playing: For some reason, blogger does not like to upload my videos, so you can click on this link: http://www.youtube.com/watch?v=6v-V9_j2hzY&list=HL1324558660&feature=mh_lolz 

This is our friend George.  He would play-bite Charlie's hand, and every time he would stop, Charlie would pause for a moment and then extend his hand to him again.   

Apparently, they had all been waiting for us to leave the party the night before to get started on the paper snow flakes and such. 

I'm really happy about the poinsettias.   

Our Advent wreath looks extra festive with the branches and pinecones.

Now the rest of these pictures are just a couple of cuties being cute.

I'll warn you: these next ones getting a little maniacal.  She was a little pumped up by all of the day's excitement.

St. Lucy's Day

December 13th is the feast of St. Lucy.  We were very excited to celebrate it this year, now that Lucy is getting older.  We had a lot of fun tailoring some of the old Swedish traditions of this day into our own life (which was busy busy busy at the time.  This little celebration took place in the half hour we had between James coming home from an exam and bedtime).  Lucy (the eldest daughter) carried a tray of saffron buns that we baked to the table.  Then we ate the saffron buns by candlelight while listening to "Santa Lucia" on youtube.  Lucy's godmother even sent us a special candle for St. Lucy's day, which is now Lucy's pride and joy.  Any time she greets James or I, or we finish our meal prayer, she proclaims "Happy Saint Day!"  All of her pajamas are "St. Lucy's Day pajamas."  And sometimes she points to things and says "that's special for St. Lucy's Day."  I think she had a good time.  

"Lussekatter" which means "Lucy's cats"  I'm not sure why...  They are saffron buns with raisins, but Lucy picks off the raisins, even though she usually likes raisins.

Here are a few pictures of a sleepy Charlie and me from the other day.  I have a new strategy in the quest for sleep with Charlie.  He wakes up between 4:30 and 5:30am.  BUT, sometimes if I let him play on the floor for 30 minutes, he is then ready to snuggle under a blanket with me and go back to sleep for an hour or so.  I will take it.  At the point these pictures were taken, Charlie is ready to get up again and is getting cranky that I am not complying.

I wanted to say thank you for all of your kind words and prayer for Charlie as well.  In this past month, we have been overwhelmed by all of the love and support we've felt from everyone we know.  There will be more blog posts about this (ahem... all you Secret Santas), but I wanted to say it now too.  

Charlie's diagnosis

 After much testing and waiting, we've finally received a diagnosis for our little guy.  It's not what we had expected, but we are grateful to have arrived at it nonetheless.  As it turns out, Charlie has a missing piece of genetic material from his 17th chromosome, which means he has Smith-Magenis Syndrome.  Some common features of Smith-Magenis Syndrome include: mild to moderate intellectual disability (comparable to someone with Down Syndrome), developmental delays (walking, talking, etc), sleep disturbances, behavioral problems, and possible other medical problems (the most common are ears and eyes).  If you'd like to read more about Smith-Magenis Syndrome, here is a great website (click on "What is SMS?): PRISMS  After we heard the news, it made sense with what we know about Charlie.  The reason he squeaks while he breathes is due to floppy vocal cords, which is a symptom of SMS (he'll outgrow it).  Another symptom of SMS is skeletal abnormalities-- Charlie has a 13th rib.  Though the sleep disturbances will likely get worse, Charlie already wakes up every morning between 4:30 and 5:30am and is up for the morning.  (Lucy, on the other hand, awakes at 9am).  In terms of developmental delays, Charlie is already a bit behind of where a 6 month old (almost 7mo)-- he's not yet sitting up, or passing things from hand to hand.

Of course, this was hard news for us to hear.  But, really, we recognize it as a gift from God.  Which means it's going to be difficult, but that it will also bring even more love into our lives.  I wish you all could meet Charlie, because I know that many people who read this blog have not had that pleasure yet.  He has the most beautiful smile, and laughs so freely-- when you tickle under his arms, when you bring your forehead to meet his, even when you just shake your head back and forth.  Though I know things will likely get much more difficult as he gets older, I know that he will still be our Charlie, that he will still be a source of great joy for us and for many other people.  

In the midst of the difficult things about his diagnosis, there are a few pieces of good news: 1. There seems to be a decent amount of help and support available, even though this is a fairly rare syndrome (1 in 25,000).  Apparently we live in one of the best counties in the area in terms of funded (i.e. free) therapy programs for developmentally disabled children.  2. We have a great doctor, who has been very thorough and helpful.  3. Children with this syndrome are often not diagnosed until they are older.  Because Charlie is being diagnosed so young, he'll be able to get more help and intervention sooner, with both developmental delays and possible medical problems.  Also, we have a chance to prepare.  4. Infants with SMS often have a difficult time eating.  His doctor took one look at him and said, "But, I can see he is having NO trouble eating."

So, we are grateful for the gifts God has given us, both the ones that are obvious and the ones that may not appear like gifts in the moment.  Thank you for all of your prayers so far, and please keep praying for us.

Ok, Mom, that's enough.

In the meantime...

It's been a long week.  Charlie had his two big medical tests this week, and oh my, are we exhausted.  The first test ended up being quite early on Tuesday.  7:30am to be exact, which means we had to arrive at the hospital at 5:30am, which means I had to stop feeding Charlie at 3:30am so he could be ready for the anesthesia.  At 4am, Charlie decided that if he wasn't going to be fed, then he wasn't going to sleep.  Luckily he was very sweet and coo-ey instead of mad, but whew baby, it was early.  He did get very angry about a half hour before the test when I wouldn't feed him.  Anyway, he did great with the anesthesia.  The test was a "direct larynscopy bronchoscopy," which I will translate for you as "camera down your throat."  The doctor said he has some floppy vocal cords, which might account for Charlie's frequent squeaking noises, and is usually something they outgrow.  The hardest part of that day was spending four hours in the recovery area listening to all  of the other kids wake up from anesthesia.  Apparently most kids do not wake up well from anesthesia (big surprise when you think about it), and it really broke my heart to hear so many kids cry that desperately.  I was very very thankful when Charlie kicked his leg a couple times, opened his eyes and smiled.   

His next test was on Thursday-- a CT angiogram.  I am stilled a little amazed when I think of this day.  The nurses decided to give it a go without anesthesia.  Apparently they can swaddle them really well, and if the baby is not crying too hard or struggling or something, they can get the imaging they need.    The only problem was that Charlie is so very very chunky that the nurses could not get an IV in him.  They tried three times and were about to just put him under anesthesia when someone had the great idea to call up a doctor they know who is apparently the queen of finding a vein.  And she proved the title.  Still, I was apprehensive that Charlie would calm down enough after having been poked four times, and not being fed for the last four hours.  I think a ridiculous amount of people must have been praying for us because sure enough, he just sat in that little papoose and sucked furiously on his pacifier.  The got the imaging and off we went with no anesthesia.  YAY.  We are still waiting on hearing the results of this one. The offices are closed for Veteran's Day, so hopefully early next week we will know.  Thank you thank you for all of your prayers for us.  I am relieved to have these out of the way.  Unfortunately, Charlie now thinks it's okay to wake up at 4am every day and not go back to sleep so I still feel like I'm recovering from the craziness of it all.

Yet, in the midst of all of this stress, we've had some very happy times recently.  Last weekend our friends Mike and Carly came to spend some time with us (well, mostly Charlie, who is their godson, but they let us tag along).  It was quite the day.  We went to mass.  We ate waffles.  We went to the nearby nature park.

There are a lot of really interesting trees here.  

Lucy has a love for leaves and cannot bring herself to pass them by without making a bouquet of as many as her little hand can hold.  Carly and Mike were very indulgent.

When we got home, we started on a 3-hour homemade pasta making adventure.  Carly brought over her pasta maker and we all pitched in and made some very delicious pasta.  Perhaps this picture is too small, but in the pan sitting on James' lap you can see all of the pasta that we had already rolled out.  His job was to catch it out of the pasta maker.  

 After dinner, we read autumn themed poetry together, and then sang songs together, accompanied by James or Carly on piano and Mike on guitar.  We sang everything from Beatles to Sufjan Stevens to bluegrass.  Oh, and Lucy put in a request for "Hot Cross Buns."  It was quite a fun day.

This is Charlie the night before his first test.  He just looked so sweet all wrapped up in this towel after a bath.

Today I tried to make a special effort to play with Lucy a lot.  She's been here and there this week while Charlie and I have been at the hospital.  She had a great time with everyone she spent time with, but it seemed like she was a little peeved at me for leaving her and for not playing with her more in the evening when I was so tired.  We were playing kitchen and she decided this would be fun.  What would you do if THAT popped out of your sink?  It was fit for a scene from Ghostbusters.

 Then she wanted to hang out in there for a while and eat some grapes. 

 Then we made a refrigerator tree.  The tree itself is taped on the fridge, and all of the leaves are magnets that I cut out with magnetic strip and cardstock.

Then she wanted to take a picture of mommy, Lucy and Charlie.