Maren had her second cardiology appointment here in Michigan on Monday. I'll give away the ending by saying right up front that I felt like a goober leaving the hospital. I couldn't stop smiling!!! The visit went great... although we had a rocky start. In the waiting room Maren was totally content playing with the toys until the nurse called her name. That's all it took to trigger a breath holding spell and down she went-- seizure and all. (Oh, Maren!) She was fine. I was surprised that the nurse didn't even freak out. She just said, "Let me know when you're ready," and walked off. Works for me-- less is definitely more with Maren.
When Maren came to, we went back for an EKG. She screamed through the entire thing, of course, but this time she made it a point to breathe, so it was all good. When they put the pulse ox on her toe she began to throw her signiture punches ("bitch slaps," really.) After a moment of mass hysteria the nurse said her sats were 86 and asked if that sounded okay. I couldn't believe she wasn't down in the 70's the way she was carrying on!
When we got to the exam room a doctor was waiting for Maren-- one of the Fellows-- for the preliminary exam. Maren pretty much hated the guy and so the breath holding recommenced. The pulse ox was still on and now she was in the 70's. The doctor kept trying to get us to adjust it, but the longer she was in the same room with him and the longer we messed with it, the more Maren got upset. Finally I told the doctor, "this is stupid," took the monitor off her toe and handed it to him. I told him she was pink at home and that was good enough for him.
The fact that Maren was still enough for her echo was nothing short of a miracle. Our biggest concern going in there was that they would send us home and schedule us to come back for a sedated echo. Ugh! She did it, though. Thanks to Echo Tech Mike, the Wonder Pets, Dora, Diego, and the theme song to Little Einsteins, they were able to get the images they needed.
After the echo, Dr. Ensign came in and Maren was all smiles. I still haven't figured out why Maren likes some and absolutely hates others. He was pleased. Her heart function is still not great, she still has the moderate tricuspid regurgitation, but her liver is back down to a decent size and she's doing FANTASTIC. We weaned her Lasix to one dose a day from two, cut the spironolactone and then kept everything else the same. Like I said, it took me forever to stop smiling!
At home Maren is doing great. There was definitely an adjustment period once we got to MI, although it's hard to know how much was post-op behavior and how much was the move. She is more fun than ever. She is the GOOFIEST little girl I have ever known. She cracks herself up and everyone around her. (Except, of course, when she's smacking you or holding her breath.) Her latest thing is knock-knock jokes. She'll knock on a wall, the floor, or anything around her and then say, "Nah," to which someone responds, "Whose there?" She'll say, "Muh," and we'll say, "Maren who?" She’ll smile and then we say, "Maren you glad ...." and finish the punch line with some random statement, but she usually can't hold the laughter in long enough to hear it in its entirety. She's a crack up!
We've been spending the last couple of weeks trying to get her acclimated to her preschool. She's in a special program to help her with her delays. (Once she turned three the program shifts from in-home care to preschool.) Obviously the big push now is her speech. Her receptive language is really good. If we can just get her past that pesky apraxia! She's getting there. Leaving her at school has been a challenge, though. Major separation anxiety + breath holding + seizures = pain in my butt, but the staff has been AMAZING. I know it will work out in a matter of time.
Okay-- blah, blah, blah.... Here's a video. One of Maren's favorite things in preschool is doing yoga. Here's a demonstration of what she's learning... (Maybe even better that the yoga poses in this video is the recording of Henry's inability to control his bodily functions. Listen for it at the beginning.)
Here are some pictures from the last month or so...
Plymouth Orchards (An eternal thank you to the Hansens for introducing us to this place!)
Yay for happy, healthy kids!
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