Hannah is finally napping right now. She is so terribly congested that consistent sleep has been elusive these past few nights. After her first rough night, we have had two more of them. So we have an appointment to see our pediatrician this afternoon. I am so fearful that this is the beginning of something […]
[Continue reading...]Rough night
12 Sep by
I’m so hoping that last night was just a fluke and not an indication of things to come. Hannah has been just a bit congested since yesterday morning. Nothing dramatic, just a slightly runny nose here and there. During her morning nap yesterday, she would only sleep about 20 minutes in her PackNPlay before waking […]
[Continue reading...]Little Ethan McKown, you will never be forgotten
10 Sep by
I haven’t been able to get Little Ethan out of my mind since he passed away last week from Gaucher’s Disease type 2. When his dad caught me the morning after he passed and told me what happened, it has felt like a knife in my heart. I know my husband is feeling the same […]
[Continue reading...]Finally, something not to worry about!
10 Sep by
It has been so incredibly busy for the past two days, and the next two days are just as busy! Taking care of Hannah and her appointments/therapies really has become a full-time job lately. Leaving the house in the morning and getting home MINUTES before Ethan and Abigail’s bus gets here from school. Anyway, we […]
[Continue reading...]How this Cerezyme shortage could really hurt Hannah
7 Sep by
As many of you know, Genzyme (the company that makes Hannah’s biweekly infusion of Cerezyme) had to shut down production of Cerezyme back in mid-June. At the time, it was determined that the children with neuronopathic Gaucher’s disease and other type 1 children under 18 years old (as well as those with type 1 in […]
[Continue reading...]Rough day today, another child lost their fight
4 Sep by
Since Hannah was diagnosed, there have been six children who have lost their fight against neuronopathic Gaucher disease. On facebook this morning, I got a message from a dad that we have come to know really well, and he told me that their toddler child passed away just a few hours earlier. This is a […]
[Continue reading...]
Latest Comments