Happy Birthday Penelope!
Her First Birthday was celebrated at home with family and was such a joy and blessing, but she was still recovering to a large degree and facing dramatic delays.
A year later, her delays are still considerable, but she is now taking confident steps across the room and so close to being a full-on walker, even without her orthopedic ankle supports! She’s fully weaned from her feeding tube and eating and growing like a champ. Her speech delays are challenging as well but she’s improving every day and she is a very strong communicator, even with her limited speech. She’s even started humming along while daddy sings lullabies at bedtime.
She’ll be on heart medication for life, and there are more surgeries in our future, but her outcomes are very positive given her condition. Many babies with her background need follow-up surgery within the first year, and it looks like we’ll be 2 years out, or maybe even more before needing a followup surgery. Eventually she’ll outgrow her valve replacement and need another heart valve replacement surgery, but she’ll be much older and stronger and bigger for that one. There was some brain damage and seizures as a result of some of her surgeries, but it remains to be seen if there will be any long term effects or if her neuroplasticity will work around it.
We’ll never be “done” with our medical journey. She’ll always be medically complex, on heart medication, and have future heart scans, surgeries, and even potential transplant. But in the face of that, she’s doing incredibly well, smiling and laughing and playing all day, and is quickly learning to play and share with her new baby brother and her 4 cats.
We are all so grateful to Armer for their support through our difficult medical journey, the costs were astronomical and every contribution from family and friends, along with organizations like Armer, helped us to stay focused on Penelope and worry less about the finances. We deeply appreciate all you do.