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Author Archives: Carrie

First attempts at socialization

Written on September 3, 2009 by Carrie

One of the things that we are starting to feel is necessary is for Hannah to start socializing with other children around her age. We don’t have any friends with young infants, so the only real experience she has had are friends of her brother and sister, who are obviously older than she is. We…

in Dealing With Public Perceptions, Rare Diseases, Therapy

- 6 Comments

Why I am dreading the tracheostomy

Written on July 9, 2009 by Carrie

3 Comments

A couple of days ago, we had our followup with our ENT. Hannah has been having some breathing issues lately, and I had brought them up to her since our pediatrician and occupational therapist felt that she had airway issues. The ENT did a laryngoscopy and found that Hannah had vocal cord paralysis. She would…

in Conditions and Diseases, Dealing With Public Perceptions, Family Life, Rare Diseases

- 3 Comments

Planting the “special needs” seeds

Written on June 25, 2009 by Carrie

0 Comments

Because Hannah’s disease progression is slower than was originally expected (thank goodness!), we have been able to slowly plant the seeds of Hannah’s illness to Ethan (8) and Abigail (5). We made a very strong point never to say she is “sick” but that she has a “disease.” We don’t want them to connect being…

in Family Life, Rare Diseases

- 0 Comments

Yes, I DO raise my kids differently

Written on May 21, 2009 by Carrie

10 Comments

Out of the hundreds of wonderful and supportive comments and emails I receive, every once in a great while I apparently piss someone off with something I share. Instead of writing back to this one person, I decided to share my response here in case anyone else felt the same way. When I mentioned a…

in Dealing With Public Perceptions, Family Life, Raising Awareness, Rare Diseases

- 10 Comments

How a little bear named Hope made history

Written on May 7, 2009 by Carrie

1 Comment

Over the years, I have met some wonderful people online who have become an some of my closest friends. Being able to meet them in person, even just once, has helped solidify friendships that have lasted almost a decade. Throughout this journey with Hannah, I have also met some wonderful people. Some who have become…

in Advocacy, Raising Awareness, Rare Diseases

- 1 Comment

Fine Line between Research and Parenting

Written on April 19, 2009 by Carrie

5 Comments

Not only does my beautiful little girl have an incredibly rare and fatal disease of which only a few hundred children have, but we recently found out that her DNA mutation combination (the combination of my bad Gaucher gene and my husband’s bad Gaucher gene) is something that has never been seen before and cannot…

in Conditions and Diseases, Medications and Treatment Options, Rare Diseases

- 5 Comments

My “reality hits” moment that I had a special needs child

Written on April 5, 2009 by Carrie

6 Comments

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…

in Day In And Day Out, Rare Diseases

- 6 Comments

Creating my own support system

Written on March 22, 2009 by Carrie

5 Comments

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…

in Conditions and Diseases, Rare Diseases

- 5 Comments