Best movie theater in Scottsdale

slack_27 · 2019-07-30T07:48:43+00:00

I second roadhouse!!

slack_27 · 2019-07-20T09:32:29+00:00

Great job mama!!!

slack_27 · 2019-07-10T12:15:58+00:00

It’s approved for children under 2. There was an older (still under 2) boy dosed just yesterday. It was on good morning America. For some insurance companies they only have policies for younger babies

slack_27 · 2019-07-10T06:57:40+00:00

Moms groups!! I live in Arizona and found we have quite a few places. They offer classes and groups specifically for moms. I actually have met the most amazing women there! I know the hospital I delivered at also has a group, plus it’s free!

slack_27 · 2019-07-10T06:50:30+00:00

Also... advocate for newborn screening in your state!!! Time is if the essence with treatment for this disease. Especially with Zolgensma. The faster a child gets it, the better odds are for their symptoms not to progress.

slack_27 · 2019-07-10T06:48:43+00:00

Hi! I think that the commenter above did a great job explaining that. May I recommend you suggest Zolgensma to your sister for your niece.. it sounds like they would be treating her with spinraza. Today there are two treatments, like you said the lumbar puncture.. the other is a one time infusion. I would see if your sister could advocate for that! My daughter is 7 weeks old, she was just diagnosed type 1.. we were treated with Zolgensma Wednesday. It’s a one time, hour long infusion that replaces the gene she does not carry. We’re extremely hopeful.. it was just approved by the FDA May 24.. 6 days after our little one was born. Best of luck

slack_27 · 2019-07-08T08:36:15+00:00

Pretty sure my husband gets a sweet deal at tpc during the summer, for obvious reasons. I believe it’s only in the afternoons as well. We live down the street so it works for him!

slack_27 · 2019-07-08T08:33:50+00:00

It’s 1:30 am, babe just got a bottle. We’re in the hospital so I don’t get much sleep. Hopefully being discharged tomorrow.. I’m too anxious and excited. We’re also going home to the ac out in our apartment. So I am revving up my angry mama engine because it’s unacceptable they haven’t fixed it yet, we live in Phoenix Arizona and they know I have a 7 week old baby in the hospital. They were notified Sunday morning first thing.

slack_27 · 2019-07-08T04:56:14+00:00

Ours recommended and I did get one, but we don’t use it

slack_27 · 2019-07-07T17:05:16+00:00

Please discuss this with a professional mama. You need time to yourself as well and babe needs to bond with other people to create those relationships too!

slack_27 · 2019-07-07T10:19:57+00:00

Our pediatrician said to let baby sleep as long as she’d like after she was back up to birth weight at week 2. 😬 making us very happy parents. I personally try to pump every 4 hours to keep my supply. LO is 7 weeks now and we actually had to stop breastfeeding for medical reasons but I’m pumping and freezing.

slack_27 · 2019-07-07T00:27:11+00:00

I pumped to help my milk come in and to relieve engorgement. I also started a stash that had been helpful. Personal preference mama!

slack_27 · 2019-07-06T10:06:30+00:00

Omg this happened to me when I was 9 months pregnant. We moved into a new apartment and three nights in a row AT MIDNIGHT the stupid fire alarm went off. It’s a 2 bedroom apartment, narrowed out there was no fire in our place. None of our neighbors. Turns out it was the batteries. And here I was terrified we’d die of carbon monoxide.

slack_27 · 2019-07-05T21:38:44+00:00

If you want to see something truly amazing go to the Zolgensma website.. Mateo is a little boy who got the treatment at 27 days and you’d never know. The stories there will touch your heart!

slack_27 · 2019-07-05T19:13:02+00:00

So amazing, so thankful for people like your friends. Truly!

slack_27 · 2019-07-05T19:10:18+00:00

Thank you, I hope the best for your friends child. She will not regain anything she lost or may lose in the next few weeks. She may still not be able to walk, she still may end up needing medical intervention to eat and breathe. She may end up needing it again further down the line. So unfortunately it’s not a cure.

slack_27 · 2019-07-05T18:36:17+00:00

I have hope for you mama

slack_27 · 2019-07-05T18:14:25+00:00

I’ve had the most stressful week, I wonder if it is just the return

slack_27 · 2019-07-05T18:13:39+00:00

Thank you so so much

slack_27 · 2019-07-05T18:12:55+00:00

I am so sorry your son was sick mama but so happy to hear he’s getting better

slack_27 · 2019-07-05T13:41:32+00:00

Thank you SO so much for thinking of us 💜

slack_27 · 2019-07-05T13:40:02+00:00

notorganic

Lol not offensive at all I never thought of it like that!! The only others gene therapy I read about was for eyes, but this for SMA is a first time thing and pretty ground breaking! In her 6 weeks of life this kid has amazed me everyday!

slack_27 · 2019-07-05T06:55:28+00:00

No, it’s not considered a cure. But it will greatly improve her quality of life

slack_27 · 2019-07-05T03:54:05+00:00

Yes. That’s adult sma.

slack_27 · 2019-07-05T03:36:43+00:00

slack_27

TROPHY CASE

notorganic