Weighing it at 7lbs 15 ounces and 20.25 inches tall we brought home our dark haired girl and settled into a deliriously
The tremor has vanished now, but Marie is troubled by severe reflux (or vomiting). They tell us she suffers from a "failure to thrive". Marie no-longer takes a pacifier, she struggles to suck hard enough to keep it in her mouth. Her head control is poor, and she doesn't stand often. Many nights, Marie does not sleep well, though Mommy and Daddy try to keep her comfortable
Despite all of this every day with her is a blessing, she can laugh, she can smile, she can play. On good days she can roll over. We try so hard to focus on the good, and take the best care we can of the blessing we have been given.
Update, September 2008: EEG has proven Marie DOES NOT have seizures, she has a movement disorder called Dystonia caused by the damage to her brain from Leigh's. She is now completely free from seizure medication and much more alert. She coo's, she smiles, she plays. She is such a joy! How blessed are we?!
Update April, 2009: Marie is proof that God answers prayers. She smiles, talks, plays, still eats by mouth, though she did wean herself from nursing in March. She is able to move her head side to side, and with assistance can hold very small things in her hands. She adores her big sister Josie, and has a very special relationship with her Daddy. Diazepam is controlling
Update September 17, 2009:
On August 28, 2009 God called Marie home to be with Him after the most beautiful summer together. She fell asleep the night before safe in bed beside Daddy while I was at the hospital with her new little sister who had arrived that day. Sometime in the early morning hours God called to her and she flew, waking in Jesus arms. She is healed, Praise God, and she is running, dancing, singing and laughing in the fields of Heaven. We are struggling daily to get by without our joyful girl. It is hard to be without her but we rejoice anticipating our reunion with her when our work here is done. Big sister Josie misses her sister badly, and little sister Sarah will learn about her through pictures and stories. We were blessed with the time we had, we know that no matter how long we could have had her it wouldn't have been enough. Our special angel, beautiful girl, Little Mama, perfect princess, we miss you and we love you.