For the past couple of days, I noticed that Hannah’s abdomen was getting bigger. Then last night after her bath, Daddy made the comment to me that he thought her stomach looked bigger. Having him make that comment without telling him what I was thinking proved to me that I wasn’t just be paranoid and […]
[Continue reading...]Planting the “special needs” seeds
9 Jun by
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 […]
[Continue reading...]To trach or not to trach…Do I have to answer that question?
8 Jun by
There is a discussion on our GD23 family list regarding the personal choices made by different families on whether or not to trach their GD23 babies. The families were so passionate about their decisions, and I was able to see both sides of that decision very clearly. So many heartful and painful decisions such as […]
[Continue reading...]Alec Baldwin – Lyso what?
6 Jun by
Occupational and Developmental Therapy Day
5 Jun by
Hannah enjoying her developmental therapy (not staring at the ring LOL!) Today was a good day. Thanks to the decongestant, she had a much better night sleeping (and so did I!). Between that and starting her antibiotics for her ear infection, she seemed like she was almost back to her happy self. I decided to […]
[Continue reading...]National Institute of Health visit set!
4 Jun by
Whoo hoo! Our plane tickets have been purchased (well, the NIH ordered them)… We will be leaving for Bethesda, Maryland, on July 13th (arriving in the evening) and leaving Saturday, July 18th, around noon. We will be staying at the Children’s Inn adjacent to the hospital, but they want Hannah listed as an “inpatient” and have […]
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