Baldwinsville, Ny
USA

315-802-8202

THE PURPOSE OF MY BLOG IS TO FIND OTHERS OUT THERE SIMILAR TO OUR DAUGHTER'S CONDITION.  TO HAVE OUR STORY BE HEARD AND SPREAD AROUND. TO GET GUIDANCE, MEET NEW PEOPLE, A VIRTUAL COMMUNITY OF HOPE! WE'RE HOLDING ON TO THE POSSIBILITIES! LET YOUR VOICES BE HEARD. EVEN IF IT'S JUST A HELLO 

A Mother's Journey~Ezra Monet

These are the Moments that makes us proud to be called MOM

Christina Manning

Hi readers, I wanted to make this update seperate from my last one because that was super special, and it had to be by itself! This update is about the accomplishments Hannah has made, and how so very proud of her we are! She makes giant leaps forward, and then sometimes has mini steps backwards, but we take the good with the challenging and that's just how life goes! So here is some very awesome "We are So proud of You Hannah Monet Manning Moments"! I hope you enjoy

So the moments that make us proud! Hannah visited Channel 9 news, and someone very Special gave her a Nikon Camera for her Disney Trip! Hannah went to the 2015 Special Olympics and even gave it a whirl! Hannah went, and sat through an entire Chiefs baseball game and tried cotton candy! Hannah can express her favorite season, character, and she has FRIENDS! None of this was possible a year ago! Hannah has a full set of braces on her teeth, and a bite plate, and required 0 ZERO medication for the several appointments she has already been to! (mom still can't get through the dentist without premedication) LOL Hannah is accepting the fact that her life is now 100% relying on a feeding tube, and at times she gets annoyed with it, but so do we... She walks with it, with pride!

I couldn't be more proud! Does she still struggle! Absolutely! The braces HKAFO's on her legs are a PIA and very much annoyance, but it's our world now, along with the next steps were going to be facing! Hannah has an upcoming wheelchair evaluation, she will be getting her own customized we chose (non-powered) wheelchair. Hannah has not so great muscle tone in her hands, and poor dexterity especially when concentrating, so having her try and operate what I call heavy machinery isn't gonna float my boat! She has her next surgery on June 26th to switch from her G-Tube Peg tube to a GJ Tube, weather she will continue on her continuous pump feeds or switch to bolus idk!

She has a muscle biopsy soon to be scheduled, and eventually an home ambulatory EEG monitoring test to be completed. She will soon be placed back on seizure medication for her seizures.

                        It kind of feels like a medical unit in our house lol