Michigan, here we come!

28 Aug

20130828-213558.jpg
Unless you saw my Facebook status update yesterday, I should fill you in on the latest before explaining the title of this post.

Tuesday before lunch, I finally got in touch with the nurse (whom I love!) at the hematologist’s office in Savannah so I could get the results from Rosalie’s CBC done on Monday. I grabbed my pen & her lab report from her last appointment to write on, and asked for her white count.

“5.9”

Okay, that’s not bad. Her white count last time was 7, so that’s not much lower and the normal limit according to their lab is 6.0 – 17.0. So, that’s good to me!

The next important count I needed was her neutrophil percentage.

She paused & slowly said, “ooonnnneee…”

“One? As in one? One percent?” My heart just dropped. (Normal range is 25-45%)

“Yeah.”

“So what’s her ANC?”

“59.”

“Seriously??” My heart dropped again.

All I could think is my poor child has an ANC of 59 and this doctor thinks she’s A-okay!!!! He’s crazy!! (I think a normal ANC for a baby should be at least 2000.)

The nurse then goes on to tell me that the doctor has changed his mind and he does want to do a bone marrow biopsy and soon. She said she would talk to him, schedule it for a Mon or a Wed & call me back.

A couple of hours later, the doctor calls me himself. He basically tells me everything the nurse told me. He added that he had reached out to the Severe Chronic Neutropenia International Registry (SCNIR) for guidance & so that Rosalie’s tests & treatment could be tracked for research. We talked about congenital neutropenia and cyclical neutropenia and testing her for both. He said he would like to do the biopsy next week, but with the holiday it may not be until the week after, “but I really would like to do it next week.” And then when we were ending the conversation he said, “You should be hearing from us in the next few weeks.” Umm, ok.

What I did not tell him is that I have been corresponding with a hematologist who is actually one of the founders and executive officers of the SCNIR (the Registry he was talking about) and he was willing to see Rosalie.

20130828-213654.jpg
So Will & I met with Rosalie’s pediatrician today and talked about everything and we have decided to take Rosalie to see Dr. Boxer at the University of Michigan in Ann Arbor. She has an appointment set in early October and all of the arrangements are being made. Unfortunately, with her immune deficiency issues on top of neutropenia, taking Rosalie on an airplane full of strangers & their germs is not really an option.

I am confident in & SO EXCITED to see Dr. Boxer!!!! He is going to help Rosalie & she is going to get well and she will no longer be a prisoner in this house!!!!!! She can go to Bible class with her friends, go to the park, go to the grocery store, go to the swimming pool, wherever we wanna go!! That is exciting!!

20130828-213920.jpg

Advertisements

2 Responses to “Michigan, here we come!”

  1. Diane August 28, 2013 at 10:03 pm #

    That is great news! Continued prayers friend!

    • sogamom August 28, 2013 at 10:04 pm #

      Thanks so much Diane!!! :))

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: