realness

Tonight I am just plain mad.  I know...it isn't very becoming and doesn't make for an uplifting post.  I often think that I shouldn't blog when I am feeling down or upset, but in reality it usually helps me sort through all that is in my head.  Maybe, it isn't that I am mad...I think I am truly heartbroken.

Our day of appointments was long. We left the house at 8 and returned after 4.  We saw the orthopedist this morning and he was nice.  He reminded me of a grandfather as I sat in the office and boohooed.  He went from an informational surgeon to a compassionate older gentleman who seemed to understand the weight of my concerns.  He did a sensory test to try to determine where Eli has feeling and where he doesn't.  It appears that he has a good bit less feeling than one would expect him to have with a lower lumbar/sacral level lesion.  I watched with my own eyes, wishing he could feel the pinches...but he did not.  He also has hip dysplasia.  I guess that just means that both of his hips are easily coming in and out of socket.  We thought this might be the case.  The doctor put him in a soft brace (it actually looks like a very large cloth diaper). It has padding in it and is somewhat bulky.  It will keep his hips abducted and may help...time will tell.  He will wear it all day and night for about 6 weeks when we go back again. This afternoon we spent a good bit of time with an orthoist who fitted it for him.

After we left the orthopedist appointment we went upstairs for his neurosurgery appointment.  I cannot tell you how nervous I was when they measured his little head.  That is one way they are tracking his head growth to check for hydrocephalus.  Thankfully, his little head is growing normally so far and we will continue to monitor it for any large increases.  We are thankful to still be shunt free, although we have a long way to go.  Honestly, I am not sure you are ever in the clear, but I think if you get past a year or two your chances of needing one goes down dramatically.  They also said his little scar on his back looked great!

I have felt so mad and frustrated today.  So angry that we are dealing with this.  When we have to talk through our medical history with doctors they kind of look at us like....really??   Each time we meet with a new doctor, I feel the need to let them know that I indeed took my folic acid religiously!  I think it is impart due to my pride and probably somewhat do the fact that I always feel guilt since my body grew him. 

He is honestly the sweetest and most precious little boy.  Kev and I already love him so much and yet our hearts ache knowing that there are great challenges ahead.  I wish so much that he were healthy!  I am struggling to balance my faith and reality.  I wish there was a cure, a fix.  My heart is sad.