Wednesday, January 30, 2013

Late update..

I just realized that I never posted an update after my last appointment, but sadly there wasn't too much to say.  The doctors didn't seem too surprised that I was feeling the way I was, but I think they were definitely disappointed. This surgery is unlike most others in that you can't operate directly on the biggest part of the problem (the syrinx-pocket of fluid built up in the spinal cord).  All you can do is relieve the pressure on and around it and hope that it responds in a timely manner.  A typical syrinx is made up of spinal fluid, mine however is made up of spinal fluid and blood, on which there is no research, so we don't know if we can expect it to go down at the same rate as a typical syrinx.  What we do know is that any changes in the syrinx can cause big changes in how I feel, both good and bad.  Any changes in the spinal cord or flow of spinal fluid will cause changes in balance, headaches, pains, etc.  Some creating pressure, some relieving pressure.  In the meantime nerves are reconnecting, muscles are going through changes while trying to heal and get stronger.  I still have little to no feeling in a large part of the back of my head, other areas are painful at times but not others, and I still get the shooting throbbing pains into my forehead.  Sometimes they're so strong and frequent that all I can do is lay down.  They did prescribe a stronger pain pill I can take when the pain is overwhelming.  Thankfully I have only needed it a couple times.
I am doing better overall, but definitely still not where I would like to be at this point.  I can typically tell about 30 minutes after the 6 hour window that my pain meds (Tylenol and Flexeril) have worn off and it's time for more.  I can't wait for the day that I'm not dependent on it to feel somewhat normal and functional.  I have also been trying something new in the morning, which was typically my worst time since I haven't been medicating during the night.  Kevin usually wakes up earlier than Logan and I, around 6am, so I take my meds at that time since I'm awake anyway and go back to bed.  Then when I wake up with Logan, typically around 730, they are already in my system and hopefully relieving the worst of the pain.  My next neuro appt is Feb 5th so we'll see what's next at that time.
In the meantime we have settled on a name for our very active little girl.  Miss Carley Frances has been keeping us entertained with her in-utero gymnastics, and I've been having far too much fun acquiring her future wardrobe.  It's definitely been a good distraction!  Her big brother has surprisingly been very involved and excited.  Logan loves to talk about his baby sister (Car-wee :), kiss my belly, organize and sort her clothes with me, and show them to Daddy.  I can only hope he doesn't lose this excitement, ever!  Right now we are busy refinishing furniture for his toddler room which he is also very excited about!  My next OB appt is on the 6th.
Once again, we can't thank everyone enough for the month of food we received from our amazing friends.  Some dishes were so big that we still have portions in the freezer!  I am happy to be back to cooking, with Kevin's help at times (I still can't lift much), and also happy to have an appetite again!
Looking forward to some good news and progress in the coming weeks, all positive thoughts and prayers are very much welcomed and appreciated!

Wednesday, January 16, 2013

Frustrated..

I haven't updated in a while because there hasn't been much to say, not a whole lot has changed, besides finding out that we're expecting a baby girl!
Otherwise, everything is about the same.  I'm in a pretty good bit of pain still, in some ways worse than I was right after surgery.  I still can't feel parts of my skull and have a great deal of pain in my neck and back of my head.  For the last week or so I have also been having many of the throbbing Chiari headaches, lately about 20-30 a day, in addition to regular headaches.  Everytime I turn my head, look down, get up, sit down, roll over in bed, etc., I feel that throbbing pain come from the back of my head to my forehead and throb for a good 5-10 seconds.  Sometimes they come one after another and feel like it's never going to end. They are as strong and sometimes stronger than before, and definitely more frequent.  I sit here right now watching Kevin vacuum and I can't imagine being able to do that right now.  The pain would be unbearable.
I have another follow-up appointment at my neurosurgeon's office tomorrow so I'm definitely anxious to see what they have to say.  I have one month before I have to be back on full-time Mommy duty and we're definitely worried about whether or not I'm going to be ready. 
In the meantime, we cannot thank everyone enough for all of the amazing food we've been eating for the past few weeks.  We have truly been so spoiled, it's blown us away and we couldn't do this without you. 
I'll try to post another update soon after my appointment, in hopes that there's something positive to share!