Enna' routine for sometime suctioning and she is bagged during her bath instead of dragging the tubes .

[333pinkitty]

does she have to live her whole life like this?? will she ever walk and talk?

[rachaeliification]

Your baby is so beautiful. We thought my daughter had sma - until he was diagnosed with tay-sachs.

[carpenter52006]

my daughter just turned 1 month and she is still in the NICU and on monday they are doing a tracheostomy and a g-tube and it is scary. we still dont know when she will be able to come home. my prayers and thoughts are with your family and enna.

[p3rp3trat0r]

I too have a son with a trach and ag tube.  He is 4 mos. old. We were in the NICU for 4 months and just got home a couple weeks ago. At first it was difficult to deal with his medical condition. We do trach care twice daily and change the trach weekly. It's hard at first, but we got quite good at it. I totally know how you feel. My prayers are with you and your family. Praying for Enna to get better.

[kdgcdaws]

Enna is a beautiful girl! Thank you for sharing a little of your daughter with us! My son Casey is also SMA type 1, trached, vented and 6 years old! He also is perfectly happy being suctioned! In fact, he lets you know that he wants to be suctioned!

[webkinzrock96]

how was she not scard

[medicaldud]

She has gotten use to this. She has had to do it all her life, and will always have to.

GOOD QUESTION.

[llohin]

The qeustion about SMA and what we have to do for her. She actually smiles while getting suction and such. SMA is a gene that has a carrier . 1 out of 40 people are carriers. She would not have to do this for the rest of her life if there was a cure. The cure is on a a brink. Check out Christopher Reeve and see that life can change at any moment. People who have no true understanding will never understand ones truth. Never begin to judge ones life without truth of understanding it first.

[YelimRay]

@llohin I agree and you sound like a very smart parent and i dont no you but judging by the clips you sound very loving. Your daughter is beautiful and I hope they do find a cure and soon! So many medicines etc yet there are still somethings that have no cures and that must be horrible. I don't have children yet but I couldn't imagine being in your shoes. Or your little girls for that matter. This all will make her stronger God bless you all!

[llohin]

How would you as a parent feel watching your baby turn blue and stop breathing and not be scared by that. How as a baby would you feel if you had no understanding of why you can't breath? Don't swallow your secreations for 30 minutes at all. Drink water and see what that feels like . SMA has 1 out of 40 people who are likely to be carriers. If I had one wish I would wish that there was a cure and that things were better. Never mock whats on the other side of ones fence until you have been there!

[1992peter]

Your daughter is in my pryaers.

She is VERY cute.

Check out my channel to learn about me.

God bless you sweetie.