wife to Jake, mommy to my 3 crazy munchkins, Lily (7), Jonah (5.5) and Kate (4). Taking this crazy blessed life one day at a time.

12.26.2012

I spoke too soon.



Well, after a phone call from Kate's genetic counselor, it looks like we do not yet have a diagnosis for Kate. 

Yes, this is disappointing news. We are trying to stay patient. 

Kate needs to go back and have the labs done again. She is really going to love that. NOT.

One of the things her team is looking at closely did come back elevated for a second time. So, they want to check it for a third time and if it comes back elevated again, then she will need to go back for further testing. 

The further testing would be looking into a possible mitochondrial disease. 

Keep those prayers coming. 

Thankfully, they are giving Kate a little break and she will not be getting the labs done until March, when she goes in for her appointment with her neurologist. 

They did say that they are not worried about it so we shouldn't be either. 

It's just discouraging that this journey is continuing still and we are still searching for an answer. 

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12.23.2012

Advent.


We have had a GREAT advent season this year. 

This is the second year that we have done activities each day and we all have LOVED it every day. 

Here are the different activities we did every day this past month:

    -Go on a Christmas hayride

      -make a gingerbread house



      -Do something nice for someone

      -sing carols

      -go out and look at Christmas lights

      -open one gift (Christmas eve)

      -Go out for a special breakfast


      -Paint a Christmas picture



    -color a Christmas picture

    -build a snowman (we couldn't do this because we had no snow, so we had a movie night instead- Veggietales, The Little Drummer Boy)

    -bake a birthday cake for baby Jesus

    -make a Christmas decoration

    -do a Christmas craft


    -make/buy special ornaments


    -Go sledding (we couldn't do this one either, but we did a different activity instead).

    -make paper snowflakes



    -have hot chocolate and candy canes

    -go pick out gifts for siblings

    -go to the library and get Christmas books

    -bake Christmas cookies

    -Charlie Brown movie night with "Christmas" ice cream


    -make cards for our mailman, Warren

    -bake cookies and bring them to a neighbor

    -make Christmas cards for friends



     I am already feeling a little sad that Advent is just about over because I have been loving doing these little activities with the kids every day! 

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12.19.2012

Gifts.



When it comes to giving the kids Christmas gifts, this year we are trying something new. 

- Need it.
-Wear it.
-Read it
-Want it.

Plus their stockings.

That's it. 

I am so excited about this.

In previous years, we used to just buy stuff for them if we saw something they would like. On Christmas Eve when we would go to wrap their gifts, each kid would have a bunch of random things, nothing that had a lot of thought put into it. 

This year, we are being much more intentional about what we are getting for them, since it's just 4 things. It is so exciting to know that they are going to LOVE everything we got them because we put in a lot of time thinking about what they would receive. 

I also love this because it limits how much they will be getting from us, and we can more easily focus on the meaning of Christmas and what it is really about. 

Like I said last year, we do not do Santa with the kids. 

Last year we had no problems with this at all. 

This year however, Lily is protesting this a bit. Even though she knows there is no real Santa, she likes to say that she believes in santa and that he is going to bring her presents. I think she just wants to believe in him because most of her friends do. 

We are having a wonderful Advent season so far. I will be posting about it soon- I have lots of pictures to share about all of the awesome activities we have been doing! 

************

In other news, Lily had her Kindergarten holiday concert at school yesterday. 

We had such a nice time and Lily and the other kindergartners did a great job. 

It was very bittersweet though because I couldn't stop thinking about how much Lily's class looks like those poor children in Newtown. And I couldn't help but notice the number of kids in Lily's class yesterday (3 kids were sick).

19.

That would have been every single one of those kids. 

It's too much.

But this post is not about that. It's about the joy that we felt watching our kids perform cute holiday songs for us. It is by far, one of the highlights of Christmas 2012. 

Lily is in the back row, right in the middle. 

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12.18.2012

Talking.

After Friday's horrific events, I wrestled with whether or not I should talk to my oldest daughter about what happened. 

She is 6. 

My baby is 6. The same age as most of those sweet little ones in Newtown. 

At first, I didn't want to say anything. I wanted to protect her and her sweet innocent heart. No child should have to fear such things. Not just yet. I know that each day, as she grows older, she will become aware of the evil that exists in our world. I wish I could hide that from her forever. 

Sadly, I can not do that. Even though she is just 6, she is very much influenced by the outside world now that she is in full time public school. As I thought about whether or not I should say anything to her, friends reminded me that even if I don't tell her, there is a good chance that she would find out from someone at school. 

After talking it over with Jake, we decided that I would talk to her. 

Honestly, I was nervous going into my bedroom, interrupting her quiet time, to talk. 

I started out a little shaky. Almost mumbling, saying that something very sad had happened the previous day. She asked me what happened. I told her that a lot of kids and some grown ups died. 

She asked me how. 

I said that someone that had a lot of evil inside of them hurt them. 

I was slowly becoming more confident. 

She asked, " how did he kill them?" 

She crawled into my lap.

I said,"with a gun." 

She asked me where. 

I said that it happened at a school. 

I reassured her that her school is safe. I asked her if she had any questions. She had just a few. I told her that if she had any other questions, she can come to me or her dad. 

I told her that I wanted to tell her about it so that she would hear about it from me and not from someone at school. But I told her the main reason why I wanted to tell her was so that she could pray. Pray for all of the families that are hurting so much right now. 

Later, she came to me and asked,"mommy, were they scared?" I told her that I thought they probably were.

She hasn't asked any questions since then. She did choose to wear green and white to school on Monday.

Our talk was very simple and I stuck to only the very basics. I kept it open so she could talk freely and ask questions. When our little talk was over, she wasn't scared, but more thoughtful.

I don't think our conversation could have gone any better. She knows only that some kids and teachers died because someone shot them in a school. That's it. No other details. I felt that was just enough. She has seen nothing on the news or radio. I feel like that would be too much for her young heart to handle and too much for her young eyes to see.

We chose not to say anything to Jonah and Kate, however. I feel that they are too young.


My heart is broken for those families in Newtown. I am trying not to let the fear take over. It is so easy to picture that happening at Lily's school. Or Jonah's school. It's hard not to be afraid.

What is this world coming to?

Come, Lord Jesus, Come. 

new Lauren



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12.13.2012

A Diagnosis?


This afternoon was good.

Kate's appointment went really well. 

We first met with Laurel, a genetic counselor, for about an hour. She was wonderful. She really took the time to look into the details of Kate's episodes and really everything about Kate, including my pregnancy with her. She really listened to us and took the time to be very thorough. She loved the journal that I keep where I write down every.single.one of Kate's episodes and the details of each episode. She loved it so much she took it and copied it for their records. 

Next, we had a wait for a little while. 

Kate and Daddy reading Curious George while we wait.

Then we were brought into a slightly bigger room where our team was waiting for us. Yes. We met with a TEAM of doctors just to talk about Kate. It was great. The team was made up of doctors that are some of the best metabolic and genetic specialists in the WORLD. We are so so blessed. 

It was slightly overwhelming since there were 7 of us in a small room that was about 95 degrees. 

But, it was good. They were all asking questions about Kate and going over the info they already had on her. They observed her and played with her and she won them over instantly. 

Kate impressed all of them with her wonderfully cheerful and lively personality and they were all asking her for big hugs before we left. 

They looked over all of Kate's history and we talked about medications, her episodes and her lab work. 

They all agree that she has a migraine gene and that she is suffering from a migraine variant, cyclic vomiting syndrome. 

They did, however, order another set of labs for Kate, which we had done right after we met with our team. They saw the results from her labs from when she was in an episode, now they wanted to see what the results would be when she is not in the middle of an episode. They are being extra thorough, which is great. Kate is in the best hands possible.

Sooooo, I guess we do not have a 100% diagnosis, but they seem very confident that Kate does in fact have Cyclic Vomiting Syndrome. 

Overall, the appointment was great. It wasn't that great that it took twice as long as we were told and I didn't know that Kate was going to need more blood work done. She was NOT happy about that at all, but she was happy with the princess stickers she was given afterwards. 

We finally left just after 4pm (our appointment began at 1pm) only to get to the parking garage to find that someone had backed into our van and put a BIG dent and a smaller one in the front bumper! They didn't even leave a note. So, that was a giant bummer, but thankfully the damage is just cosmetic and no one was hurt. 

YIKES!

Thank you to all that kept us in prayer today, and over the past year as we have been trying to figure out what's been going on with our sweet little girl. We love you all. 
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12.12.2012

Big Day.


Tomorrow is a big day for our littlest munchkin.

Tomorrow we head into Boston for her appointment at the neuro-metabolic clinic at children's hospital.

Tomorrow we are expecting to get Kate's official CyclicVomiting diagnosis. 

I am actually really looking forward  to this appointment and can't wait to sort through her lab work and figure out what it means. 

I can't wait to be done with these big appointments and to have an answer for our girl. 

Keep us in prayer tomorrow afternoon, 1pm to be exact. All along I have been praying for an answer to Kate's vomiting issues and I am really praying that tomorrow is the day that we finally get that answer. 

As usual, Kate is awesome and has been looking forward to her appointment all week. 

I will do my best to post tomorrow night and let you all know how our appointment went! 


new Lauren





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12.11.2012

"O Holy Night"



Do you ever hear a song for years and years, sing along even, without really listening to the words?

A song came on the radio this morning. One that I have heard thousands of times. One that I love and love to sing. 

But this morning it hit me in a new way. 

I turned it up, louder than I normally would, and listened. I heard each word and let it sit with me and sink in. I began to sing along, beginning to feel a bit choked up by the hugeness of the lyrics and their meaning. 

So often, we sing along to songs because they are familiar or have a good beat. I do it all the time. I sing along, without actually realizing what I am singing or what the words actually mean. 

I will be playing this song over and over today, letting the words soak in, trying to get my head to fully understand. It is after all, the true meaning of Christmas. 

Read through the words. I mean, really read them. It gives the song new meaning. 

O Holy Night
O Holy Night! The stars are brightly shining,
It is the night of our dear Saviour's birth.
Long lay the world in sin and error pining.
Till He appeared and the Soul felt its worth.
A thrill of hope - the weary world rejoices,
For yonder breaks a new and glorious morn.
Fall on your knees! Oh, hear the angel voices!
O night divine, o night when Christ was born;
O night, O Holy Night, O night divine!
Led by the light of faith serenely beaming,
With glowing hearts by His cradle we stand.
O'er the world a star is sweetly gleaming,
Now come the wisemen from out of the Orient land.
The King of kings lay thus in lowly manger;
In all our trials born to be our friend.
He knows our need, to our weakness is no stranger,
Behold your King! Before him lowly bend!
Behold your King! Before him lowly bend!
Truly He taught us love for one another,
His law is love and His gospel is peace.
Chains he shall break, for the slave is our brother.
And in his name all oppression shall cease.
Sweet hymns of joy in grateful chorus raise we,
With all our hearts we praise His holy name.
Christ is the Lord! Then ever, ever praise we,
His power and glory ever more proclaim!
His power and glory ever more proclaim!





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