30.12.13

DANGLE THE MED-FREE CARROT

At Lauren's last gastro appointment, the doctor dangled the idea that it was unlikely that Lauren really needed her domperidone. He stated that it only works in 10-20% of people anyway so it was unlikely that it was really helping her. She has been on it for over a year now and she takes it 3 times a day so getting her off of it would be lovely. He suggested that we wean her over a few days and then see what it was like without it. If there were any effects, they would happen quickly since it is a fast acting drug.

The other night at 1am, with Lauren still up and having tummy issues that made her feel like she needed to eat constantly to help what she was feeling, we decided that she is in fact part of that 10-20%. She was first put on the medication because she would vomit and there would be food coming up that she had eaten over 5 hours before. Her stomach and intestines just don't do a very good job of moving food along and the domperidone, as much as we would love for her to be med free, seem to help things move properly and for her to be able to regulate her feelings of fullness and discomfort. I'm sure that one day she will be able to be free from her meds, but that day certainly isn't here just yet. When I was pregnant with Lauren, I swore that I would try to do everything I could to keep her from taking any medication that she doesn't need to so sometimes it is hard to see her on so many meds, but at least we know that they are medications that she needs. And in the end, if it helps to make her life better, I will continue to fill those syringes every night for as long as she needs it. It also makes my life better because it means that we all get the sleep that we so badly need.


28.12.13

LONG OVERDUE CHRISTMAS POST

I enjoyed Christmas by putting away my computer and it was glorious. Matt has been home all week and we've been able to spend so much time with Lauren. She's been in pretty good form lately so she's been lots of fun to be around.

Christmas for us was spread over four nights as we went around visiting with different family members. Lauren loves an audience so this was like heaven for her.

So now here's a ridiculous number of Christmas photos. I'm sorry.


Lauren is one of the few kids that I know who actually loves getting clothes. She holds every new item up to her chest and walks around with a big grin. However, she also does this with facecloths and dish towels, so maybe she just likes holding material up to her chest. Of course, Elysha went and got her a new Tinkerbell tshirt which is getting layered over all of the cute things that I actually want Lauren to wear. Argh!



I had gotten Lauren to practice opening gifts before Christmas so by Christmas she was ready to go! Bags or wrapping, she knew what to do with all of it.

For Christmas morning, Lauren got to try cinnamon buns for the first time. They were a bit hit... and so was the sugar high that happened afterwards.




 Matt and I also got time to celebrate Christmas at home with Lauren. She got to open her stocking, do some pilates (as you can see in the picture below) and play with her new dinosaurs. She has spent the last few days roaring as her dinosaurs make their way through the house. That's my daughter. Her two favourite things are Tinkerbell and dinosaurs. An obvious combination.



It was such a blessing to spend Christmas with Lauren and see her as a regular kid. Next year we will get to celebrate with two regular kids. Just the thought of it makes me want to take a nap.

18.12.13

YES, MY CHILD DRESSES HERSELF


When Lauren was first born, she was so chill. The doctors described her as "content" and she really was. However, now that isn't a word that people would use to describe her. It isn't that she isn't content now - she is still happy and curious and loves all of the people who love her - but she is too full of energy to be considered content. I swear, this kid doesn't stop. When I found out I was having a girl, I pictured a mini-me.  As a kid, I was quiet, easily entertained and almost never naughty (and I'm not making this up, you can ask my mom). I was like this because I was so painfully shy that I preferred to blend into the background and watch others. Well, my daughter is one of those kids that I would have been watching. Lauren doesn't walk, she runs. She has opinions about everything, knowing exactly what she doesn't like and taking such joy in the things that she enjoys that a packed elevator of adults all end up with smiles on their faces as they watch her revel in the way the elevator moves and stops while dancing with a beaming smile. As a kid, I might have had a person comment on how well behaved I was, but my daughter breaks down people's barriers with her free, life-loving spirit. 



Sometimes I find it hard to let her be the little girl that God has created her to be. I want her to sit quietly with me while she wants to go sit with any other kids in the room and try to play with them. I try to get her to walk and hold my hand, but she is too busy running to the next person she can say hello to or to point to any and every bird that she sees and yell, "Wooooowwww!" I try to get her to wear cute little outfits that match properly and all she wants to wear are her Tinkerbell  fairy tops, any shirts with cats on them or her Toronto Maple Leafs shirts. I get told a stern, "No" in the morning whenever I try to pull out anything that does not meet her strict clothing criteria. (And, Nicole, I would like to point out that I have you to blame for 75% of her clothing choices... and Matt for the other 25%. Thank you both.)


In the end I realize that Lauren and I are very different people and we probably always will be. I have taken a different approach to parenting than I expected. I'm try not to make decisions about Lauren by my own reflexes for what I would do because I didn't manage to break out of my shyness until my mid-20s and that is not something that I want for her, but by saying no to behaviours that might get her in trouble, hurt or sick. If she wants to go around charming everyone with an elevator dance, so be it, but, no, I will not let her continue to eat the bread that fell out of her hand and onto the floor during a particularly free part of the dance. She can run through the grocery store saying hi to everyone and I will encourage her for her friendly behaviour but I will also teach her that she always needs to stay safe. And she can pick out her own clothes but sometimes I will still pin her to the ground and wrestle her into the clothes that I want her to wear... and then she can pick the shoes which lately have been either her gold sparkly shoes or rain boots. Both of which she has also worn out of the house with pjs. It will be hard to let her be her own person and to know where to draw the line but I don't want to stifle her spirit. After all, it is that spirit and strong will that helped her fight when all we had was a prayer. Now I just need to keep her corralled as I see where that spirit will take her.  


14.12.13

POOR SANTA

And here is this year's mall Santa photo. There were three little ones this year because Harrison's mom had another little baby this year. Next year, we'll have to find a way to fit four kids in there with Santa!

It was the same amazing Santa as last year... though after this one, he may decide to hang up the hat. Look at the poor man's face. There is no way that he gets enough milk and cookies to make this worth it.

And we just laughed and laughed.

I'm sorry, Lauren.

However, as soon as the photo was done, Lauren was happy as a clam.
We all went to get the free ice cream that came with the experience and, since she almost never gets ice cream, maybe she will like Santa a bit more next year. But probably not.



9.12.13

SO, THE VERDICT IS IN... SHE STILL DOESN'T LOVE SANTA

We went to the Children's Heart Network Breakfast with Santa on Saturday morning and it was a bit of a gong show for Lauren from the get go. She is starting to be more vocal about what she wants in the form of crying, becoming human spaghetti and just plain losing her mind (the terrible twos are hitting a few months early. Ugh).

For Lauren, the highlights of the day were getting to ride the escalator, wandering through the ballroom and sitting in other people's chairs and eating mini Oreos. Her lowlights were all of the typical breakfast with Santa things: the fancy dress, the breakfast... and Santa.











She only kind of liked Santa at the end when he gave her chocolate (though, come to think of it, I don't think she got any of it, did she, Matt? Hmm, I wonder where it went). It was an exhausting morning of chasing Lauren around, but overall she had fun (I think).

It was also interesting to chat with some of the other moms there. There is a sense that this breakfast with Santa is different than others because there is a common thread that links us together. While we all share the joy of our children and their present health, everyone slips so easily into talking about our children's conditions that it made me very aware of just how much that is a part of my life. We act like normal moms and dads, but we carry the weight of the fragility of our children and the knowledge of what it is like to fear for their life like a cloak.

When I talk about Lauren, I have a way of sounding positive about what a miracle it was to be at the hospital when we were, that she didn't need a transplant but could keep her own heart and about how, even though she has a pacemaker, she can run circles around "regular" kids. Yet, even when I speak like that, I am always aware that I am holding back from recognizing the weight that I am wrapped in that is stitched together from fear, loss, grief and sorrow. Besides, no one wants to hear me constantly going on about stuff like that. It was so long ago and I should be over it by now. But unfortunately, I am not.

Right now I'm struggling. There are triggers in some of the strangest places that make that invisible cloak that I wear something that can seem too heavy to bear. I feel like I always need to be strong, like sharing this makes my faith appear weak or that I'm not over something that happened a year ago. But I'm just trying to be real.

Today, I spent much of the day crying. Lauren has a bit of a cold and I wasn't feeling awesome so I decided that we would watch A Muppet Christmas Carol this morning. It was fine until Tiny Tim came along with his sick little self. Yes, he was a muppet. Yes, I know it is a movie. But I also know the feeling of almost losing a child. I know Tiny Tim doesn't die in the end, but again, I know that story all too well from my own life with Lauren. Sometimes I get lost in my tears and the crying seems to go on forever. At times like that, it can help to hold Lauren close and, while I would rather that she didn't see me cry, she sits in my lap and wipes away my tears while giggling at the water that comes from my eyes. She will gently hold the sides of my face and it helps to feel her presence in my lap. I know that she is alive and well, but that doesn't stop the feelings from becoming overwhelming.

I hope this next baby is super boring. I don't think I can take any more excitement. I think that the baby hormones are helping to trigger all of this crying, but I also want to make sure that I don't slip back into depression, which I know can happen easily in times of stress or change. So I'm going to work on consciously fighting back against these feelings. That doesn't mean that I can't cry or I have to stop experiencing feelings, but it means that I need to work hard to live in the present and not allow triggers to have that power over me. I guess that I will be watching A Muppet Christmas Carol a bunch over the next few weeks. It's a good thing that as soon as it finished, Lauren started doing the sign for "more"! Yes, Lauren, you'll get to watch it much, much more.

In just a few days, it will be exactly a year since her final surgery. While I know that the date will bring up those fears and fragility that I hate to feel, I also know that it will be an important day in our family. What an exciting day that will be! I'm sure that on that day I will shed a few tears, but I think that most of them will be tears of thankfulness. Lauren can laugh with/at me as I cry for joy.

5.12.13

MERRY AND BRIGHT

I've been playing around with making some graphics. Here is a Christmas graphic that you can download to use this Christmas season. You can download it here with crop marks for an 8x10 to frame or here for a full 8.5x11 page.

Watch for more downloads to come! I've got lots of ideas percolating.

2.12.13

LET CHRISTMAS BEGIN

Two weekends ago, Matt and I decorated the house for Christmas. Normally our tree is full of glass balls and crystal ornaments but this year, with a handsy little Lauren around, we made sure that all of the ornaments could be manhandled without worry. I must say that I sort of miss my beautiful Christmas tree, but I love that, every morning, Lauren asks for the tree to be turned on and then does a nice long, "Wooooowwwwww!" She knows how to make the ornaments make music, light up, and exactly which ones jingle.


So now we're set up for Christmas and the season is going strong. This weekend Lauren meets Santa again. That was such a huge success last year, I can't wait to see how this year goes!

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