Thanks so much for everyone's continued care and concern for Ivey and our family. As some of you may know, Ivey is now traveling to Scottish Rite and other specialty doctors. I thought I would share with you our newest discoveries and confirmations about Ivey's condition. Ivey does have Chromosome 21q-partial deletion syndrome. This syndrome is known to involve mental, motor and growth retardation. We know some concrete problems that Ivey faces; however, we will only be able to gauge her mental and motor development over time. Basically, we can identify more of her physical issues for the time being. The Craniofacial Clinic at Scottish Rite thinks we will be able to repair Ivey's lip between 3 and 5 months of age and her palate somewhere between 6 and 9 months of age. In the meantime, we are taping Ivey's cleft lip with steri strips to prepare her for surgery. She does have anophthalmia- which is the cause of her blindness. This means the tissue for her eyes did not form. She has microcephaly. Her heart condition is the same as in the beginning. It has a dysplastic aortic valve, but it is working fine. Ivey also has contractures of her joints. She has started therapy to help with this. Ivey has a significant case of reflux, to which many of you can relate. Ivey also has a difficult time feeding. Some of this problem is related to her reflux. However, she can only retain 35 ml at one feeding. (30 ml = 1 ounce) Therefore, she is small for an eight week old who was fullterm. She weighs only 7 lbs. Growing will be a problem for Ivey. This is why Matt and I constantly focus on her feedings and reflux. Ivey has many obstacles to overcome and many battles face her that are still unknown. We count our blessings to know that she is surrounded by so much love.
I know everyone is anxious to meet Ivey. I would like to introduce all of you to her (since she can't get "out" yet). She has beautiful brown hair; unfortunately for Matt, the hair that has fallen out is coming back blonde. She has a fair complexion. I think she looks more like Walker. Ivey does have the cleft lip, but she has a sweet grin. As for her eyes, she looks like she is asleep the majority of the time. There is a definite distinction between her sleep and awake time. Ivey does have a "personality", just like any other baby she coos, cries and fusses at us. Ivey loves to be touched and calms when we talk to her. I have noticed that she responds to voices that she recognizes, especially Traci's. Ivey definitely knows that Knox and Walker are special. I hope this helps you to envision Ivey in all of her wonder.
I also want you all to know how grateful we are for our family and friends. As Kerri Giles said, it will take a village---thank heavens for our village.
We love you all,
Gwen