Life with Coco and Gigi... and Jack-Jack too!

Life as a Mom, A Homesteader, A Blogger and A Wife.

CHOP Part II

After not sleeping all night I woke up this morning very confused about what to do with Abby. On one hand I don't want to be the neurotic mother who jumps the gun. On the other hand I also don't want to be the mother that regrets for the rest of her life not being aggressive enough when something might be wrong with her child. I thought a lot about it (while not sleeping) and talked to my Mom this morning (who had talked to my sis) and I decided to try to get the ball rolling with CHOP. When we saw Dr. Johnson when I was pregnant he told us that should anything go wrong with either girl to just call.

I got on the computer and filled out the online form to request an appointment at 10am. Then I called Dr. Johnsons office. At 11am the neurosurgery nurse practitioner called and shortly their after Dr. Johnsons office called. I talked to the nurse practioner for about 30 min and she told me that she would feel most comfortable if I just brought her down. She told me that I should prepare that a hospital stay might be possible based off of what I had told her. Of course that freaked me the heck out.

I called Brian and he started walking to the hospital (since it is in the city near work) and I called my parents. My Dad and Genna stayed with Grace and my Mom went with me to CHOP. By 12:45 we were meeting up with Brian and registering Abby. The neurosurg. nurse practitioner saw us around 1:30 and did a very thorough assessment. She asked a ton of questions, examined her fontanelle in great detail and did a lot of motor tests. She said that her fontanelle looked ok, it seems to be starting to close but that is okay since it is still open. She is not terribly worried about the motor delays (since they are common with a ventriculomegaly) but wants to have a CAT Scan and testing done by an ophthalmologist. She said that there is a possibility that her brain is putting pressure on her optic nerve causing the eye problems. The scan will also look for any fluid buildups. She isn't worried about an MRI since she is not too worried about a problem with growth plates.

She thought everything will be fine but we need to keep a close eye on it. So we will go back in two weeks for the scan, opthamology appointment and follow up with neurosurgery.

I knew kids would be exhausting but who knew how exhausting. :>) Thanks for all the prayers.

3 comments:

Mandy 1:38 AM  

I'm glad to see this update. I've been thinking about you all day long today. Especially after getting your message.

I'm glad that you were able to get in and be seen so quickly. Hopefully the scan in two weeks will look fine.

I'll try to call you this weekend. (((hugs)))

Ash 1:41 AM  

i got your message today!! i can't believe it!! you, brian, and the girls are in my prayers!!

kewd 12:40 AM  

Kristen:

It is Wendy from FF. I just read this and wanted you to know you and your girls are in my thoughts. *hugs*

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Over 8 years we have struggled through 3 IUI's, 6 rounds of IVF, several RE's, hundreds of appointments and the loss of three little angels. Now we find ourselves the proud parents of two perfect little girls and a wonderful little boy!!

Both of our girls struggle with some disabilities but that won't keep us down. Each day has it's own brand of insanity but we love it. Most days I am more monkey wrangler than mother but I do the best I can. Todays goal - getting to tomorrow.

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