Going on Vacation!

I hope you all had a Happy 4th. Not too much has been going on lately with Harlie. The last two weeks we’ve been getting adjusted to Murphy’s summer school schedule. He only goes Mondays, Wednesdays and Fridays now, so he’s home Tuesdays and Thursdays. Brandy usually has off on Fridays, so between those two factors, I’ve been really busy. Murphy definitely had a hard time adjusting to being home and Tom NOT being home. He kept on thinking whatever day he was home was a weekend.

So, the other night we had dinner, and we started to clear the table. We’ve given Murphy the chore of clearing the table (plates, etc). Well, it didn’t take long for Harlie to watch and want to help. So she started sticking her arms out, like she was asking for us to give her a plate. Curious, we did. And she took the plate and gave it to Murphy to carry into the kitchen. It was so cute! She is always so proud of herself when she does something like that. Anyway, so that’s our new routine now. We give the plates to Harlie, who gives them to Murphy, who carries them into the kitchen. And she’s not very patient. As soon as our plates look empty, she starts holding her arms out.

Well, the other night I left the table a little early and the three of them finished “cleaning up”. The last thing on the table was Murphy’s cup of milk (Murphy and Harlie sit across from each other). When I came back through the dining room, Harlie had grabbed the tablecloth and pulled it toward her until Murphy’s cup of milk was within her grasp. Seriously, how stinking smart is that??? I got there just in time to see her pick it up and pour it “into” her mouth!!! She wants to eat and drink so bad! I am really hoping that means that teaching her will be easier, but we’ll just have to see.

I can’t wait to tell my OT, Allison, about this, though. She has warned me that transitioning her over to oral feeds (and teaching her how to swallow and handle foods in her mouth) can take a lot of time. I really am completely prepared for a long road. If she is a willing participant, I will be happy. I am totally fine with her tube feeding and I actually think it is a really great thing when it comes to giving her meds. So, it’s not like I hate it and want it gone yesterday. That’s more of a trach thing. haha

She also took a piece of popcorn and brought it to her mouth and then laughed hysterically. She thinks it is so funny to pretend to eat.

So, the weekend after we brought Harlie home from her jaw reconstruction, there was a Trach Conference in Cincinnati, Ohio. I wish the timing could have been better so that we could have gone. I would have loved to have met all my trach friends from my support group online. I really would not have survived this journey without them.

Well, one of the moms who organizes this event, put together a video. I added the link to My Favorite Sites page. So, if you have a few minutes, you should take a look (we’re in it). I find it very moving.

Well this will be my last entry for a whole week! We are going on VACATION!!! This is our first one since Harlie came along. My whole family is going and we are all staying in one big house at Lake Anna. I don’t know what we (Harlie and I) are going to do for a week with no therapies, no phone calls, no calendar, no doctor’s appointments… WOW! Hopefully I’ll have some good pictures for you when I get back.

As always, thank you for checking in and I hope you all have a great week. I’ll probably have lots of reading material for you when I get back!

Take care,
Christy

PS - I forgot to tell you that Mike and Marcy brought their baby home after just 2 weeks in the NICU (he was born 7 weeks early). He is doing great and he is very cute - and tiny!