Saturday, August 29, 2009

August 29, 2009

As I sat down to write this blog I actually had no idea of what the date actually was. I cannot believe that August is over and we are heading into September. I asked myself where summer had gone, because that sure went fast. Kayla and I spent the last two nights staying at home while Shannon was with little man. The new schedule is great and Kayla is back to her old self. Making us laugh, smile and taking our thoughts off of our situation for a few minutes. It was wonderful being at home, we enjoyed the 105 degree weather inside our 76 degree house. Kayla didn't want to leave the house, protesting that it was hot and going back inside. I had to lure her out with promises of ice cream and a new movie. It's a blessing being back at home, definitely a great mental break.

We are still waiting to hear the final results of the biopsy, which seem to be taking forever. As I posted before, they told us it was definitely not cancer. However, they are still testing the sample because what they are seeing is very rare to see in a baby. They keep telling us they want to be absolutely sure before they tell us anything. The longer we wait, the more we feel like they aren't any closer to figuring it out. Frustrating to say the least. We would love an answer because if we had a diagnosis, we could have a direction for treatment. So unfortunately not much to tell you about the biopsy right now.

Gabe did get an MRI of his head last night, which almost didn't happen. Our wonderful nurse "C" got Gabe all set to go down to MRI, which is like moving a trailer park double wide. Then the neighbor kid got really sick and crashed which brought every doctor in the place running. Then they brought in all the special equipment and blocked our way out. For a little bit we didn't think Gabe was going to make it down. Luckily they were able to fit him in at a later time at night. Nurse "J" and nurse "S" took Gabe down to MRI and stayed with him the entire time he was there. After his MRI, nurse "J" asked the doctor if he could give us a little preliminary if possible. She even tried bribing him with cookies, which was very sweet. It's amazing how all the nurses and doctors have become attached to Gabe and show a personal interest in him. It makes Shannon and I feel wonderful knowing how many people at LPCH truly do love the little man.

The reason they decided to do and MRI of Gabe's head was to check for tissue death in the brain. They want to make sure that there is no brain damage from all the oxygenation problems that Gabe has been having. They also don't know what all the medications are doing to him. So we are praying that everything will be just fine and after this we hopefully won't have to worry about it again.

Today we decided to take a little break from all the craziness and spend a little family time together, which we haven't had much of this summer. Gabe was cooperating so Shannon, Kayla and I slipped out for a couple hours to see the firefighters at the chili cook off in San Mateo. We had a great time despite the 100 degree heat. The chili was great and seeing all of our wonderful friends made our day. Kayla even got to ride the parks little train, which she absolutely loved. We ended our day together by having dinner and saying goodnight to Gabe before we went our separate ways. It's tough not being with Shannon and Kayla but I know that both our kids are getting more attention than they were before.

Tomorrow is a new day and I look forward to forward progress.

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