Thursday, November 24, 2016

Who Me?

Sorry for the suspense, but this deserved it's own blog post.

An organization has reached out to me and asked that I go on a speaking tour in the UK of universities and speak to their Jewish groups about our familly's journey.

The conversation went something like this:

Him: So, we feel that your story is super inspiring and really illustrates faith in trying times. Would you be interested in speaking on 5 or 6 university campuses about your story?

Me: Um, what?

I gave it some thought and had to really digest the idea. It's amazing. We never set out in any way for any of this to come about. We are just a normal, average family with a pretty miraculous daughter. I never could have believed that any of this would lead here.

But the more I thought about it, the more I felt that Tehilla's success is directly connected to her name. That people would hear about a little girl with half a heart and praise G-d. And that is what this blog has become and that is why I have said yes.

As well, the opportunity to raise more awareness about congenital heart defects is too great to pass up.

So, it's official. In February, I am flying to England for a week to go on a speaking tour!

New Normals for Half a Heart

And yet, another two weeks have gone by without an update. So sorry, blog family! But at least there is a lot to tell!

First, I have been asked several time to post a video of Tehilla, so you can all get a glimpse of her personality. That is much more difficult than it sounds, as she is quite a spunky person, but refuses to allow me to record her. The other day, she insisted on bringing an umbrella to school, despite there not being any rain and burst into a funny version of "Rain Rain Go Away" that she made up on the spot. By the time that I reached for my phone and started recording, it was over and she refused to do it again.

But I searched in my phone and found a video that I took around the holidays. So, here it is (cannot be seen on a phone):



video





Tehilla had a (very belated) birthday party at school. I made her another Hello Kitty cake and she had a blast with her friends. She came home shrieking the birthday songs the rest of the afternoon, but clearly enjoyed herself. Her teacher sent me over 30 pictures, but I can't share them, because they have other children in them. Here are two, so that you can get a glimpse.





Her teacher and I have had some very nice conversations about how much Tehilla has come along and how she has had a surge of maturity, development, ability and especially, energy. They see her participating more in the activities and asserting herself better. It's an amazing thing to be having these conversations and knowing that this little heart warrior has come so far.

Here is a picture that they sent me of her completely loving when the zoo extra-activity brought chinchillas to school. They let her hold one and she was incredibly happy. (Much more than when they brought snakes or crickets in other weeks!) 


 And, here she is being the spunky, funny little toddler that she is, demanding to go to sleep with a winter hat on.

 

 
 We are all learning to adjust to our new normal. In the past, a stuffy nose would have desaturated her oxygen too much and landed her in the hospital. Now, we can just pull out the humidifier and settle in for a night at home. Tehilla had a bad cough for a few days. Her cough would turn her purple, but instantly her color would go right back. Her teacher even admitted to pulling out the pulse ox, from Tehilla's backpack, and checking her a few times. And while, her numbers would go low, the teacher would check again a few minutes later and they were right back up. (Have I mentioned enough how much I adore Tehilla's teachers?)

Some vaporub on her feet and amazingly enough- she is fine. You all might be reading this and rolling your eyes, but I'm not sure you realize what an absolute miracle this is for her. We are blessed beyond measure each and every day to have calmness and new levels of stability.

I have some other big news to share, but I will make a separate blog post a little later.


Thursday, November 10, 2016

Heaps of Energy

I cannot believe that it has been nearly two weeks since I updated our blog family. How has our little heart warrior princess been?

Well, let's see...

She has stolen my makeup and colored on my duvet. Twice. She has destroyed her almost completed newly decorated room. She colored on Mechal's book report that she had worked on all week.

Sigh. But she is healthy. She has more energy than I have ever seen her have.  She gets a little cold and it goes away on its own. She is happy and thriving and just the most perfectly normal and naughty three year old.

Toilet training has gone exceptionally well and she is very proud of herself. All in all, things could not be better.

I tried to get a picture of her but she was too busy jumping on the couch. Yes. That little cute ball of energy has half a heart. Thank G-d.