Bad News

Last week we had our MRI, which was not a pleasant process.  Thankfully, they let me hold Madi until she fell asleep.  However, as soon as they laid her on the MRI table, she woke up and they had to give her a long lasting sedative that she didn’t tolerate very well.  She won’t be using the same medicine if she has to be sedated again.

Now, the difficult part.  The RESULTS.  Well, they aren’t good; in fact, I don’t think that I could have imagined anything worse.  The doctor called us today and informed us that the news was “bad”.  Hmm, I don’t think anyone wants to hear that after their baby has an MRI done of their brain!  He then informs us that her cerebellum and her brainstem are small and/or underdeveloped.   I didn’t process very well after “the news is bad”.  He throws around some medical jargon, which at this point I couldn’t even follow!  He says he is out of his depth and we need to see a neurologist.  He believes she has pontocerebellar hypoplasia.

Pontocerebellar hypoplasia, well we definitely should have followed his advice when he said NOT to google it, and wait until we saw the neurologist!  Nothing you read about this genetic disorder is good.  I can’t even type it.  I am just freezing up.

We won’t know anything for sure until we have seen the neurologist, and I assume have some genetic testing done.

We are trying to stay positive. 

Honestly, I am a freaking mess, but I am also the mother of five.  I don’t have time to freak out, I don’t want the girls to suspect how bad it is or could be.  So, I am holding it together for now, we can’t get in to see the neurologist until the 21^st of this month.  I am going to do my best to trust God.  As a good friend reminded me, He is in control.   

Thank you everyone for your thoughts and prayers.  So many of you have sent very kind and sweet messages, and while I haven’t responded to all of them, I truly appreciate them.

Madi, bright eyed and estatic that she and Mommy are up at 4:30 a.m. getting ready for her MRI.  And mommy, well, yep folks, mommy looks like she just crawled out of bed.

After two sticks we finally have our IV in, just snuggling with mom and waiting for the meds to put her to sleep.