Thursday, November 18, 2010

BIG scare!

Ok, so I know it has been a really long time.  I do not know why but sometimes I think if I just ignore it, we may have some spina bifida-free days.  You know, days where it doesn't rule your world, days where you think life is just life.  Well that came to a sudden halt on Monday morning.  As Jim was dressing Wyatt, he put a shirt on him and suddenly Wyatt started screaming and grabbing the right side of his neck.  Of course this is his shunt side.  So when he continued to scream I ran Bella to school and then called Jim.  Wyatt was still screaming. Soooo, thinking hopefully it was a raging ear infection (and ignoring the little bit of swelling that had developed around the tubing of the shunt on his neck) we took him to our pediatrician.  Well after careful examination of his ears, throat and chest, he told us it was all normal.  That punch in the gut feeling came quickly because we knew we were dealing with a shunt issue.  Our pediatrician quickly called our neurosurgeon and we headed to UMC for the PEDS ER.  It was a long ride but Jim and I did learn from our last ER visit.  We headed home real quick to pack us some clothes because after being admitted last time, we had NOTHING for us, no deodorant, no underclothes, no hair brush!  So we could not get Wyatt in the car seat because by now his head and neck hurt so bad he could not even lift it without screaming in pain.  So after a few hours in the ER, multiple xrays, CT scan of his head and 2 failed IV attempts, we were told that his shunt was functioning properly, had no breaks in the tubing and the swelling was coming from scar tissue that had attached itself to the tubing of his shunt and with a growth spurt ripped away from his neck! No harm! Other than pain and swelling!  So while we were there a (very young) neurosurgeon resident that looked like he may have been there for all of 20 minutes managed to say a few things that ticked me off!  First he made mention of Wyatt being overweight.  Yes 1 year ago he was, but he has only gained 2 pounds in one year and exercises circles around anyone I know!  Then he said it! Well "If he is even able to walk, the weight will make it more difficult".  Now it must have been only from sheer exhaustion that I did not proceed to get up and wrap his stethoscope in a TIGHT but cute fashion around his neck!  I said that yes he will walk and is working hard on it daily with therapy.  I should have reminded him of the miracles he has already experienced! And if he doesn't walk we will love him just the same.  These stupid children in medical school that have only the book as their experience.  I should have told him about the prayer warriors we have on our side and that we do not accept ANYTHING just because that is what the book says! So yes, we had a big scare but thankfully we got to come home! PACKED ALL THAT STUFF! HA HA  He is already feeling better and the swelling is better.  So I guess it is back to our reality of Life!  It is a great life and my son is my hero!

Peds ER at UMC

Monday, November 1, 2010

Just like all the other kids!

I have started to write this blog several times and could not do it.  But now I try one more time!  Friday was Wyatt's Halloween party at the daycare.  I picked up Bella from school and we went to the daycare together.  I figured the party would be in his classroom but as I drove up, I saw them setting things up outside.  In my mind I thought "Great" another party of having to hold him the whole time and he will not have any fun.  Then I quickly remembered having his stander in the car with us and with the parking lot empty for the party, he would have plenty of room to roam.  So I got his "bicycle" out as we call it and when I walked in his room with his AFO's "RU-RU" boots, he eagerly wanted them on.  One sweet little girl "helped" Wyatt get his boots on and kept saying "I love your boots, Wyatt."  So I put Wyatt in his stander in the daycare office so I could have more room.  All this while I am just going through the motions and thinking nothing of this until I opened the doors to the outside and Wyatt wheeled around to get out.  Emotions flooded my mind.  Would people stare? Would Wyatt run over anyone?  Would people feel sorry for him?  I am glad that it was sunny outside and I could wear my sunglasses because I started tearing up as I watched him.  I teared up as I realized watching him wheel as fast as he could and play and feel the breeze in his hair as he probably has never felt before, that Wyatt was not wondering any of those things.  He was just being Wyatt and having fun in his own way like all the rest of the kids.  So many people gave him compliments on how great he was doing and Wyatt was so proud.  His big sister Bella was pretty proud of him too!  I learned something from him that day that I hope to carry forward with me forever, No matter what, we WILL feel the breeze in our hair!  We WILL do it in our own time and that is okay with us!  The party was a hit.  He ate cookies and candy!  He played basketball and even golf.  Oh yeah, he also got to see Elmo or Melmo as he calls him.  Was not afraid, either! I will post some pictures.  Saturday we went to horse therapy and he could not wait for me to even get down to the stall, he wanted on that horse.  SO, he now is riding solo again.  Ms. Bonnie laughed this weekend and said, "I don't know if it is helping him walk but it sure helps him talk!"  He talks non-stop while we are at the barn.  He just loves it there.  After riding we went to my sister's house to visit with family.  We had a good time together and did some Trick or Treating.  It was a busy weekend but it was nice and we all had a great time!

Face Painting!

Aftermath of face painting!

Looking at my shadow.