We have known for a few months now that our 8-month-old Hannah has this neurodegenerative brain disease that was likely going to take her away from us in a few years. We know what the symptoms are, we know the process it is going to take…we know all of that. We know she is…
Category Archives: Conditions and Diseases
Who do you trust to take care of your child?
This is Max at 18 months with my sister, Judy. Ever since he was born, she and my mom have been Max’s biggest fans—they think he is THE most handsome, cute little boy ever. I can’t argue with them. Whenever they come to visit, I know that Max is in the best of hands. They’ve…
Please don’t pity me because I have a kid with special needs
Saturday, my friend Sharon called. She’s an old friend from college, we talk a couple of times a year. She and her family are coming to our area Easter Sunday weekend, and she was going to stay at our house. When I spoke with her last week, she thought that maybe our family and hers…
Creating my own support system
Hannah will be 8 months old soon, and we have been dealing with her medical issues since her second day of life. She was about 2 months old once we started dealing with specialists who tested her for everything under the son. However, it wasn’t until we met with her first genetics doctor that we realized…
Eardrop Loathing.
Every few weeks it’s the same. Ivy gets an ear infection and her ears start to discharge. One of the joys of being immune deficient, I guess. Her ear goop grows all sorts of weird and wonderful things, ranging form your stock standard Staph all the way to various spores and fungii. When your body…
Can’t Beat the Leprechauns, Join Them
Since my sons were preschool-age leprechauns have made a yearly romp through our home. Every St. Patrick’s Day morning the boys awaken to overturned furniture, strewn toys, hidden mint candies, shamrock confetti tossed about and green pee in the toilets…complete with wee green footprints on the toilet seats…evidence of the leprechaun’s play time. Until last…
Coddling a child with special needs: Do we sometimes overdo it?
This weekend, my kids had their usual car fight. Again and again and again. Max wanted to sit in his little sister’s car seat (yes, it’s very cute, his is just plain blue) every time we went out. Given that he and Sabrina are about the same weight, it is not a safety issue. It…
Planning a Camping Trip With Reflux, a G-Tube and Cyclic Vomiting Syndrome…
Why, you ask? Because I woke up one morning and said to myself, “Self — Your life is disturbingly deficient in chaos at the moment… I know! Let’s plan a summer camping trip! You know — hours upon hours of gluten-free menu planning, tube-feeds without running water, barf bags, taking that ten-mile drive back into…
The Book Of Rare Diseases
Carrie will be a regular contributor here at 5MFSN. Look for her future posts on Sundays. There are hundreds of books that guide you on how to be a good parent. Each book has a different spin on our job, but the majority of them assume a certain path of development for our child. So…
Living With Cerebral Palsy Doesn’t Mean He Isn’t All Boy
It was an ordinary afternoon…sun shining, me doing laundry created by dirty boys…the boys outside playing and creating more dirty laundry…when I looked out the window onto our front lawn and saw the boys playing fetch with Ursula, our dog. Because you know, what is the point of enduring the pain and rehab of multiple…