Sorry it has been so long since I posted. I know many of you might have been worried. Thank you for your emails, cards, phone calls and most importantly prayers.
Ally is doing SUPER, SUPER well with her new trach, but I have been dealing with a lot of extra stress when working with hospital management and their orders of how much I can be involved in Ally’s care and treatments as she transitioned from her ET breathing tube, to a new trach, then the sensitivity of it for 5 days until it was changed out, and now what “official” training process I MUST follow before being allowed to 100% care for my OWN child and as quickly as possible leave this hospital. Things are getting resolved but not without lots of tears and unneeded stress.
What’s most important though, is Ally is doing AWESOME!!!!! This new phase of her and our life is a bit scary, but also exciting and I know 100% we made the right decision to trach her now. I’ll try to share more details and pics soon, but I better get some rest.
Thanks again for your prayers and support,
Tina, Ally and Family
Angel Ally Blog - SMA Type 1 
Glad to hear she is doing well. I WAS getting worried. Just sit tight…I know that is hard, but most families are there a month learning about the trach. You want to be as prepared for what to do with the trach and vent as you were with the bipap. You and Ally will do great and get home soon.
Sending cool hugs and lots of stress-free prayers!
Jennifer and Jacob
Glad to hear she’s doing so well! The rest will all fall into place! I’m sorry that they’re kind of not letting you do more right away. But just try to not stress too much. I know, easier said than done.
I hope that things move along soon, and that you’re all back home quickly!
So glad to hear she’s still doing great!! Glad you feel 100% confident about your decision because it’s never fun to second-guess. We are equally as glad we made the decision when we did. She’s doing even better than before with it!!! Hugs!!!!
Hi Tina,
I was glad to hear from you. I figured it is too hard to give updates with all the craziness there. Stay calm. Just do what they want & you will get out of there. Be patient. They would be negligent if they didn’t follow protocol for something a bit more involved. Let me know what you need. More meal? giftcards for restaurants nearby…..
Love you both!! xoxo
Way to go Ally! Glad to hear a good update. You are all in my thoughts everyday. I know how frustarting it is to be in the hospital & having the new trach is an added pressure right now. Keep reminding yourself you will be home soon! Hang in there, love you guys!
Great to hear she is doing better with trach. Keeping all of you in my prayers.