Special Needs Archives - Page 22 of 22

The First Seizure

May 31 2009

How sweet she looks strapped into this retro looking wheelchair. We laughed about how it looked like a prop from the horror movie, “The Changeling.” We made jokes, but what our family had just gone through was far from funny. Though our daughter has spent her fair share of time in pediatric wards over the past few years — always without complaint and never failing to win over the staff with her sunny disposition and ready smile — this week was truly frightening. Though our Avery has many challenges, we try not to focus on the “what ifs.” Research tells us that many of the significant medical issues for our daughter tend to present later in life, if at all. Since Avery’s initial diagnosis we’ve had our ups and downs. Mostly ups. Doctors told us that Avery might never walk, or talk but she has proved them wrong by doing both. Tuesday however, after celebrating the great results of her perfect hearing test, things took a nasty turn. I went to wake Avery from her afternoon nap — a nap I let go on longer than usual after a long day of appointments. When I entered her room I found her unconscious.[…]

May 05 2009

Our daughter had ear tube surgery today. Not a major procedure, but to me it may as well have been a brain transplant. Avery is 33 months old and isn’t talking. She has underlying genetic issues that are likely the cause, but we also know she has fluid in her ears. A whole lot of gunky fluid. What is “Glue Ear?” She failed hearing test after hearing test. They finally put a number on it – 40% hearing loss which is like listening while pressing both hands tightly against your ears. We decided to go ahead with the ear tube insertion. It would help Avery hear and hopefully speak clearly. We hesitated only because her genetic condition also includes cardiac issues which can make anaesthesia more risky. We arrived at the hospital at 7 am and took a seat in the surgical waiting area with the other gowned patients. Everyone wore the same expression of exhaustion, fear and nervous anxiety. I tried not to touch anything and probably used the community hand-sanitizer more often than would be considered NOT INSANE. While we went through the pre-surgery protocol, I kissed Avery’s little blond head a hundred times. We sat and watched[…]

Apr 22 2009

Hot damn it’s hard to get anything done with a toddler on the loose. A six year old at least can read or play a game or find some way to entertain himself, but a 2.5 year is a vastly different story. I edit and do the layout for a weekly on-line newsletter (which I’m supposed to be doing right now actually) and also do some freelance writing and odds and ends for a friend’s PR company. But since my friend and I started seriously working on our craft business, I’ve found the need to have a true space of my own. So we converted our guest-room into an office so that I could escape to work undisturbed. At least that was the plan, but somehow these 2 little people keep showing up at my door! Today when I was desperate to get some work done I let “The Tornado” have free reign in my office for about 5 minutes. I made sure my sharp tools were safely out of reach…I learned my lesson from the craft-knife incident last week! The 5 minutes of time gained by letting her go nuts was off set by the 10 minutes it took[…]

Apr 17 2009

If you’d told me that one day I’d leave my job to be a stay at home mom, I never would have believed it. I went to school to be a teacher dammit. I’ve always wanted to be a teacher. As if I’d give that up… Of course I love my kids and I want to be with them. But not like, all the time. I’d always planned to parent AND work—in perfect balance. Because that’s totally doable, right? I thoroughly enjoyed mat leaves with both my babies, but knowing I’d soon be back at work made it easier to enjoy every moment. The light at the end of the tunnel shone bright. Mid-way through my mat leave with my second child, daycare was set up, schedules were organized and I was ready to go back to the classroom I loved, to a job I was really good at, blissfully unaware that things were about to change. At 8 months, our daughter became very ill and was hospitalized. Avery was diagnosed with a rare (as in one-of-a-kind-where-in-the-hell-did-this-come-from-holy-shit) genetic condition. Doctors didn’t have much information so we had no idea what to expect. The geneticist painted a grim picture, tossing out gems like,[…]

Category - Special Needs

The First Seizure

Paging Dr. McDreamy—Ear Tube Surgery

Toddler Tornado

I’m Lucky To Be A Stay At Home Mom