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 

Things are weighing heavy on my mind

A Mother's Journey~Ezra Monet

Things are weighing heavy on my mind

Christina Manning

Alot is weighing heavy on my brain right now..  Waiting for the date for Hannah to go back into the O. R. to undergo anesthesia again, and to be intubated yet once again, to have a full body MRI and x-rays done of all of her joints and muscles and repeat labs. Her body is slowly becoming more fatigue, and she has edema in her ankles and feet, and her legs are stiffer than they would definitely like to see for a child her age.  The Rheumatologist is suggesting Juvenile rheumatoid arthritis or lupus... Then also added on that the condition that Hannah has, the Acanthosis Nigricans, A skin condition characterized by dark, velvety patches in body folds and creases. Also called keratosis nigricans, will in fact lead Hannah to Diabetes and there's absolutely nothing we can do to stop it. I'm feeling overwhelmed, heartbroken, at loss for words. Also to top it all off Hannah's aide quite, we're waiting for a private duty nurse instead of a home health aide this time around. It's going to take quite a while they said though because pediatrics isn't easy to come by with staffing! Apparently senior citizens seems to be quite popular and extremely easy to fill, that they have even offered a $2 pay increase to the pediatric team. So pathetic. Then the next hardship, the colder weather is arriving and we're still waiting for Hannah's ramp to be built because it's becoming more difficult for her and she hasn't been able to continue using her wheelchair to school because it's literally impossible to push in our rock driveway! Like pushing it through quicksand! So yes Alot is weighing heavy.  I can keep rambling on but I'll stop there for now...