Higher Learning and Memory

Patrick's memory is improving!! Today we went to get my hair done at a family friends salon. My hairdressers daughter hurt her ankle so I left Patrick in the salon and went home to get an ankle boot from one of Kathleen's many ankle injuries. I came back to get Patrick and as we walked out into the parking lot he walked to the parking space I had parked in when we had arrived at the salon 2 hours earlier. He stood there confused with a look like
'where the heck is the car?' I then pointed at the car and said "I moved the car its over there" and he walked to the car. I sat in the parking lot realizing how wonderful it is to see this happening for him and for all of us. He is remembering situations, direction, and placement. Patrick is learning !!!

Every Day is a Miracle

The worst nightmare of my life began in our little house on Wall Street thirteen years ago. Patrick was in his car seat in the corner of our living room under the gorgeous chesnut molding stairway. As I was running around cleaning up as he slept, I dropped something I cant even remember what and it caused a loud bang. When I turned to see if I had awoken Patrick I saw that indeed he was already awake but to my dismay he was not startled by the sound. I went up the staircase and dropped the object from the stairs above him and again there was no reaction. As my heart sank and my worries began every doctor said "dont worry he is a fat healthy baby." And yes the day before his DTaP at 6 months of age he was a fat healthy baby weighing in at 21 pounds. Over the next 48 hours his brain swelled, his belly swelled and all the doctors treated me like I was nuts; nothing was wrong with Patrick. Even my brother tried to calm me saying "there is nothing wrong with your baby" but I knew there was. When he was admitted to Overlook Hospital it confirmed that his brain was indeed swollen and that encephalitis was threatening his life. All of us are guilty of taking the small things for granted but today I never see things as small. This morning I walked Patrick out to the deck so he could enjoy his breakfast outside. I went in to make his breakfast and when I came out through the sliding door the screen door hit the casing and made enough noise for Patrick to look directly at me and the door. Since his injury Patrick's hearing has been acute but his vision was for some time classified as cortical visually blind and has progressed to cortically impaired. What that really means is that all along the brain was fine and the eyes were fine but the signals between the brain and eyes were not functional. Since his first hyperbaric treatments and until a month ago Patrick would have startled at the sound of the door or any noise but he would have NEVER turned his head and visually known which direction the sound came from. His vision has been improving over the past ten years but NEVER has his acuity been able to put the two senses of hearing and sight together and appropriately respond. Patrick has brought three spectators to tears over the past two days with his little miracles. Some have even asked is it just me? Am I just hoping too hard? No we are all just seeing the miracle of development at Patrick's pace which is all so much slower but even more gratifying than that of the normal child. Seeing it in slomo makes you appreciate the beauty of every baby step and understand its importance. God thank you again for our intelligence and our will to survive. Thank you for the wonderful doctors that look outside the box and thank you thank you thank you Cranford.

Growth & Healing

The past few weeks have been frustrating, exciting, depressing; EMOTIONAL. But there is definitely more going on than we can see. Sleep patterns, eating, everything is different. One minute Patrick refuses to eat and the next minute he is eating enough for a linebacker! Some days I cant get him out of bed and somedays like this morning he was up at the crack of dawn for massive amounts of food and drink, played, bathed, and napped all before 10am. What does this sound like?? It sounds like the normal pattern of a child in a massive growth spurt! His behavior is very different too. He wants to hold hands palm to palm this was always a tactile problem. He wants to give long hugs and has shed a few very emotional tears. He loves to hear himself laugh and make noises which is much more frequent. Our belief that the inner healing has not even begun to emerge in his behavior and that we have so much more to look forward to. Once again thank you to everyone that has helped, loved, and prayed. We love you!!!

Sometimes You Have To Stop And Smell The Roses

Everyday we do so many things so quickly that we take life for granted and we dont stop to appreciate what is right in front of us. Yesterday in the sweltering 90 degree weather Patrick, Kathleen, and I went down to Menlo Park so Kathleen could try out for an 18/under travelling softball team. We parked the car and all the girls entered the field on the left side through a small opening in the fence. Patrick in his jogging stroller and myself went along the fence to a set of bleachers at the far right side of the field. He got bored quickly and wanted to be with the girls. There was another fence opening right in front of us which he refused to use. Patrick made me walk with him around the outside of the fence all the way back to the left side of the field where the girls entered; he has followed people before but never has he sat, processed, and then decided that is what I want to do. When we arrived at the dugout the coach said "did you know there was an entrance right where you started?" and to her I replied "yes but he wanted to enter where the girls came in; he wanted to get here the same way they did". As we went to leave 2 hours later we were hot, sweaty, and hungry. I said "Patrick we have to walk to your stroller." As everyone dispersed in all directions Patrick looked at his stroller and took the fast path instead of the marathon around the fence. Again he processed the information and decided which way to go. Life is too short and moves way too fast. Sometimes we just need to stop and smell the roses.
Oh, and by the way Kathleen made the team!