It's been a little while since I updated, not much has been going on. We got our results back from our chromosome tests and there is nothing wrong with those. That's great to hear but at the same time reminds us how completely random this was. It's definitely great to know that we don't need to worry about Nolan having any mix up in his chromosomes. 

We met with Dr. Lynda Pollack on Thursday (9/2). She's the genetic pediatrician and wonderful. She is an older doctor so she has been in the medical field for I'd say around 40 years. However, she was very honest in telling us that even with all of her experience she has never treated a child with this chromosome disorder. That is definitely scary to hear but listening to her explain her role in helping Kaleb made us feel better. She is basically a "consultant" to the NICU and other's treating Kaleb once he is born. She researches the disorder and then helps Kaleb's other doctors treat him to the best of their ability so everyone can work together to know what they are even treating. She has already been researching the disorder to prepare for his birth. Dr. Pollack told us she is a very optimistic doctor (most have not been very optimistic with us) however was quick to point out that Kaleb has several very serious things wrong with him and that she didn't want to get our hopes up but she will do everything she can for us. 

One of our genetic counselors, Candace, was there for the meeting as well and had printed some more information on Kaleb's disorder for us. It's reassuring to see so many doctors and professionals getting together and communicating about our son's condition, even before he is born. 

It's difficult for us to meet all of these specialists and hear them say that they have never treated a child with this disorder, especially when we are working with specialists at one of the top children's hospitals in the nation with the 4th largest NICU.

I can't describe how we have felt lately. I guess a bit numb. We try to go on with our daily routines and are thankful everyday for Nolan because he keeps us insanely busy. 

Oh and on a side note...my regular OB is an amazing man! The wonderful Dr. Peppy! He called me last Sunday when we were visiting my mother. He called me on his day off to let me know he had gotten the results from my amnio and wanted to let me know he was thinking about us and praying for us. 

We have appointments with my regular OB and the perinatologist on Wednesday of this week so I will update the journal with the outcome of those visits. We will be visiting the perinatologist every 3-4 weeks for growth scans and just to look at Kaleb and see how he is developing. I'm so excited to see the little man in a couple of days!! I need to start a photo album of all of the sonograms we are getting of him. 

1 thoughts:

michelle k

Hey! How did the sono go? I love the little profile pics of their sweet faces :) Post the link to your journal somewhere or send it to me on FB. I forgot and didn't bookmark it last time I commented on there..

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