Saturday, September 22, 2012

Dear John Paul,

It's 5 am and we've been hanging out for about 3 hours now.  Yesterday you had a great day!  We had a picnic lunch in the back yard, music and story time with Madie and Ben, and the day ended with a long snuggle with daddy during "family movie night".

Last week we met with the doctor to discuss your MRI results. You have an increase in cerebral fluid in the ventricles of your brain. It seems that this fluid is replacing actual brain matter because you do not seem to be suffering from intercranial pressure. Those are some pretty big words for me, let alone a 9 month old baby so, another way of putting it is that, while we aren't exactly sure why, your brain images look a lot like an adult with dimensia.  Your doctor expects you to have "moderate to severe cognitive delay".  This is something that is not typically seen in kids with SMA but the truth is, kids with SMA don't typically get MRIs and you are dealing with a much more progressed type of SMA than most doctors are used to treating.

We are still working on getting consistant weekend nursing for both night and day shift so your dad and I have had a lot of quality time with you in the wee hours on Friday and Saturday nights. We are praying to get the help we need soon!  With all  of this beautiful fall weather starting---I am dying to get you out and about but it's hard to pull off when we don't get sleep.

This latest development with your brain being affected has been hard for me.  It's not that I was really hoping you were going to go to Harvard and it certainly does not change how incredibly beautiful your life is...well...not exactly.   Actually, it does change how beautiful your life is.   In my humble and unbiased opinion, you just got a little more beautiful.  You see,  God is smart:  He knows how easily pride can get in the way.  Any little thing that we might attribute to human merit, we do.  "He's so strong", "He's so smart", etc...but with you...we don't get distracted with all that.   The power and beauty of His love is even more evident.  You make it more clear that the true value of human life is not in the outer displays of human ability but rather the God-given power of the immortal soul to love and inspire love.  So no, beauty is not the issue...I guess the reason this latest bit of information is hard for me is because it puts a little more guess work into what I can give you on a day to day, minute to minute basis...

Love you always,

Sunday, September 2, 2012

Dear John Paul,

 It has been busy around here to say the least. Joe and Liam have started school and have done a great job at the transition. Madie and Ben miss them a lot though and spend most of the morning asking me when it's time to go back to the bus stop to pick them up. You spent a couple of days this past week in the PICU (Pediatric Intensive Care Unit) trying to get your vent settings right...we started the process because you were just breathing crazy fast on your old settings and when we took you to see the pulmonologist, your CO2 was way too low. I think we are finally in a good place but it took several days even after you got out of the hospital before we could find the settings that were right for you.

On Thursday you had an MRI done as a follow-up test from your visit to the neuro-opthamologist. When he examined you he had noticed that your optic nerve was smaller than what he would typically expect and the MRI was ordered to give us a more comprehensive look. He also ordered a battery of blood work to screen for possible metabolic diseases to explain what he saw. So far the blood work has all been coming back normal but the MRI of your brain did show more of the story. You had an MRI when you were 3 days old and comparing the two images showed "a decrease in brain volume that will affect your cognitive abilities". The neuro-muscular doctor called to tell me this on Friday but your dad and I need to go and meet with her in person so she can tell us in more detail what the imaging means. She told me that this is most likely due to all of the frequent desaturations in oxygen that you had in your early days, maybe even from your traumatic birth. This is not something that is a typical symptom of SMA (Spinal Muscular Atrophy) fact, typically the one thing SMA folks really cling to--is that their brains are not affected.

 I think this is God's way of telling me that I'm not detached enough. Your life, my life, every aspect of our lives is in His loving hands. I need to learn to let go. I so desperately try to be in control. It is so scary knowing that I have no control over what happens...especially in your life but really in all aspects of life. But the truth are in far better hands when it is not me but our sweet Savior who is calling the shots. Hope is not having a firm grasp on the tangible good but rather trusting that God will bring us to a greater good than we even know how to imagine. Regardless of how the details of this new development play out...the daily life won't change...the kisses, the snuggles, the stories, the music will keep playing... Thank you for being my window to the heart of Christ.

 I love you more today,