My Dearest Hannah, Happy Birthday to you, my beautiful and courageous girl. This time last year, you were just making your way into this world, changing my life forever, in ways that I could have never imagined. Just looking at this picture of you resting after your delivery, right after your delivery, I see […]
[Continue reading...]Four days and counting…”the video”
21 Jul by
I’ve watched this video dozens of times. I know many of you that have been joining us on this journey have seen it as well, most likely. This was taken when Hannah was 4-1/2 months old, before we even had a diagnosis. We have no idea what set her off, but she was laughing like […]
[Continue reading...]Five days and counting…
21 Jul by
I think after such a whirlwind week at the NIH, I feel like I have totally crashed since being home. Hannah has spent today completely attached to me. No, I didn’t mind. I realized as she fell asleep on me during the day that we haven’t had this type of day in a couple of […]
[Continue reading...]She made it! NOW we know…
17 Jul by
Absolutely incredible, incredible. That is how I would describe this past week. We just got back to the Children’s Inn about an hour ago, and Hannah and I both crashed asleep. It is over! They did so much during these past four days – EEG/ABR, EKG, echocardiogram, MRI of the brain and liver/spleen, CT scan […]
[Continue reading...]Day #2 completed
16 Jul by
This has been a whirlwind two days, let me tell you! There is so much to talk about, but until we get our final wrap-up meeting on Friday with Dr. Sidransky, Dr. Goker-Alpan, and their team, I’m going to just wait. We are two days into the four-day heavy-duty testing for Hannah. She has had […]
[Continue reading...]Getting ready for Day #1, NIH
14 Jul by
Our appointment with admissions at the NIH is in 90 minutes, yet we are all still lying in bed here at the Children’s Inn. Daddy and Hannah are cuddling in the bed, Hannah laughing at him tickle her with her pacifier. So cute. Yesterday’s travel here to DC was very easy, surprisingly. Hannah fell asleep […]
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