Zoe’s Cardiologist Visit
Zoe went to see her cardiologist today – it’s been about 6 months since her last visit w/ him.
He did an echocardiogram and an EKG…
Zoe’s heart is better! 
He’s keeping Zoe on the same dose of Propranolol (heart med), and is basically just going to let her “outgrow” that medication. She still has some issues w/ her heart – but we’ll take what good news we can get. Her heart also showed improvement on her last visit, so hearing that it’s still improving is awesome! He wants to see her back in 6 months, and then – after that, most likely he’ll only need to see her once/year – that’s amazing to hear.
Thanks to everyone who’s been thinking about Zoe… we REALLY appreciate that!
ERT day
Today is an ERT day… nothing like entertaining a 14 month old (almost!) for the entire daytime, in a small hospital room! Dad’s taking her today, though – a day off for me – whoo hoo!!! I can’t wait until the next ERT (2 weeks from today), when my Mom is off work for the Summer, and can meet me at the hospital. Much better w/ company.
Zoe’s still doing good – she’s crawling all over the house, and has 5 teeth now.
Teeth!
Zoe’s discovered her 4 teeth and is now grinding them. It makes a noise like nails on a chalkboard. That will hopefully stop soon!
Crawling
So, for the past few days, Zoe’s been crawling ALL over the place. It’s so awesome. I thought this would happen so much later than it did, so it’s just amazing to me that she’s doing this. She’s so strong.
We had ERT today, and her geneticist was so impressed, also, that she was crawling – I showed him a video of her doing that on my camera. I have that clip posted in my Flickr photos if you haven’t seen it!
He’s sure she’ll walk, since she’s crawling – the same muscles are used for both. That is just AMAZING to think about – Zoe walking. When that happens, that’ll be such a milestone. Her GAA levels are around 10%, so her doctor is thinking that’s why she’s responding so well to the ERT. Today was a good day – a long day – but good.
Baby proofing the house isn’t so fun. But that’s ok.
Zoe’s doing great!
Zoe had a great time at her 1 year old birthday parties… thanks to everyone who came! We had a great time!
Zoe’s top, front 2 teeth have popped out, giving her a grand total of 4 teeth, now…
She’s on a new stomach med, to help w/ the spitting up, and that seems to be helping… still doing it, but not as often
Last night, Zoe actually crawled – all by herself! She didn’t go very far, but – she did it! We were SO excited. She has physical therapy tomorrow, so hopefully that’ll help her w/ crawling more…
We’re still hoping to be able to do her ERT infusions at home w/ a nurse, but waiting on Medicaid to approve that – hopefully that’ll go through… cross your fingers!
Upcoming 1st Birthday!
This Friday, Zoe will be one!
We had a party for her, this past Sunday, at my Mom’s house… and we’re having her other party the day after she turns one, at our house.
I’ve added pics from my Mom’s party on the “Flickr” tab – check them out! More to come after the party this Saturday!
Sleep Study
We finally got Zoe’s sleep lab test results back…
Took about 2 weeks!
Everything came back fine… no sleep apnea, she’s good to go – now, if only she would sleep at night…
Zoe’s 1st time being “sick”
Well, we went to her Pediatrician, yesterday, and Zoe has a virus.
She’s running a temperature, has really runny eyes and nose, and is acting all restless. You can tell she feels horrible. No meds, besides Tylenol, for her fever… it sucks that viruses have to just run their course…
Also, because she’s sick, we had to postpone her ERT that’s supposed to be tomorrow… now she’ll have it next Friday, instead. She can’t be sick and get ERT.
We did a sleep lab test on her around 2 weeks ago (she’s had issues w/ sleeping through the night for months now, and it didn’t use to be that way)… still waiting for the results! I’ll post that as soon as I find out.
End of Hospital Stay!
Well, Zoe’s finishing up her hospital stay… we’re doing her ERT a day early, so we don’t have to come back tomorrow.
Her mini sleep test came back great!!! She has her “real” sleep test this Saturday, at the hospital. Not really looking forward to that – I get to sleep in a slightly reclining, hard hospital chair.
Thanks for all the good thoughts/prayers everyone!
Hospital Stay
Update:
And…. we will be spending tonight, also, in the hospital w/ Zoe… another type of sleep test… Please think positive thoughts for her. They keep mentioning “trach” and I feel in my bones that’s not what’s going to happen now… but, just the same, it’s very irritating. I’m thinking apnea and bi-pap. Pulmonologist will be by this afternoon…
3/10/10
So, during the night, Zoe’s respiratory rate dropped below 10/minute a number of times… we’re waiting to talk to the doc to find out what this really means… can anyone help w/ info before then, hopefully??? Thanks! Does that sound like apnea? Oh, the blood gas turned out fine. That’s a good thing.
3/09/10
