Been Busy

The last few months we've been busy, just living and enjoying the summer!  Since Maddie got tubes, she's been progressing leaps and bounds.  She's walking like a champ, she's babbling and saying more and more words and I know she's so smart and understands us even if she can't always communicate with us.

Since around February, she has started to have terrible fits.  If she was upset or didn't want to stop something, for example to leave, she would scream, throw her head down, and if I was holding her, scratch my face, rip my glasses off, or flair and kick.  It's progressed as she's gotten older and she never really did it at school.  My MIL has been her for a few weeks working with her so she's been the primary caregiver and Maddie has started doing the same.  I think it's because she is almost 2 and also has a difficult time expressing her self.  Her PT thinks it's because in some instances she's being challenged.  I was trying to think back about her sister at this age and she definitely had her moments and she still will assult me, kicking, biting, scratching when something doesn't go her way.

Maddie has pectus and I didn't think it was too bad, but we got an evaluation from a Pectus surgeon this week who stated that it was severe and she would most likely need surgery when she's around 10.  In my mind, I thought that since she wasn't experiencing any respiratory or cardiac issues, we wouldn't do it for aesthetic purposes.  However, since doing some more research, it won't matter we will need to do this as she gets older it will become more extreme.  I also had envisioned the bar to be a small, 2-3 inch bar, but I was shocked when I saw it.  It's about 6-8 inches and will go under the entire sternum stretching across the entire ribcage!  At least we don't have to do anything immediately.

She is scheduled for a 3 day EEG at home which I'm not looking forward to.  We were unable to capture any of her 'tics' during the 6 hour one so we get to do this again.  The most difficult part is getting the nodes on and she has to be sedated.  At least we know now that she needs the full dose.

The other thing we had to do was get an ultrasound of her kidneys, bladder, spleen and that general area.  It was something I needed to check off my list, but hadn't gotten around to it.  There was no concern but one of the first things I noticed was her right ear was a little bit smaller than the left when she was an infant. Our ped said that the kidneys develop the same time as her ears so we need to get it checked out.  She never had any issues that would indicate that there was a problem, but in June her urine started to smell so I suspected a UTI and it was positive.  We figured it was a good time to do this and the results were normal - yay!

Yay for being healthy and making progress!