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Hello,

I feel terrible that it's taken to long to write, but I have time as Miss Natalie sleeps away. Last week Natalie was sent home on  HOLT monitor which detects heart arrhythmia's. Unfortunately she had several tachycardia's. Needless to say she needs to go back on anti-arrhythmic medication. She was admitted at our local hospital for observation. She was started on meds yesterday, but recently stopped them due to complications. She will begin a new drug tomorrow afternoon, and will be monitored for 48 hours. Hopefully this one works with little side effects. She should be discharged Monday afternoon. We're also waiting to hear back from Dr. Reddy who is her surgeon regarding her Pulmonary Stenosis. To make things even more challenging Natalie may need to go to CATH lab sooner than later to get a better look at the Pulmonary valve. Our hope is that they can repair the valve at the CATH lab, however there is a possibility she will need another open heart surgery. We're trying to be optimistic and hopeful. Natalie continues to do better than expected, and is so strong. She is not in immediate danger, so just continue to pray that the valve grows.

We're excited to get her hearing devices this week. I can't wait to see her response. She is starting to giggle...Michael and I have to work hard for the smiles and laughs, but man when she does it's priceless. 

She met with a developmental pediatrician today. He is hopeful that she will get all of her nutrition orally. She is so interested in oral stimulation that she should transition to oral feeds as long as she does not aspirate.

We're finding it very difficult to move forward with any financial aid. We've been told we don't qualify for disability, and that Oregon does not consider CHARGE syndrome to be an intellectual disability. Please pray that we can get medicaid to supplement our private insurance.

Samuel is doing wonderfully. They have a play room on the Peds floor, and is Mr. Chatty with the nurses. He's too cute..

Michael and I are staying at the hospital (taking shifts)...It's funny how doctors and nurses respond to Natalie..We're so used to her breathing and sleep apnea's. We just want to make sure the nurses to intervene unnecessarily.

Michael and I are so thankful for everyone's support and love. We're truly blessed and experience God's faithfulness each day. We ask that you pray that God continues to give us wisdom and keeps us healthy.

Blessings,

The Pierce Family