If Your Going Through Hell.....

If your going through hell, keep going (winston churchill). Well we are managing to plow on through and Simon is actually doing much better this week. We had a bit of a scare on Saturday when I picked Simon up off the floor and didn't realize I was standing on his G-tube and ripped it right out of his stomach. I was a wreck. Not only was I freaking out but the guilt was and is tremendous. Dave spent 6 hours in the ER on saturday and they got the tube back in. I was mad because we only had one week before he was to get the "button". So at my appointment on monday with stem cell I also went to see pediatric surgery to check on the tube, which then had two holes in his stomach. Seems the truma from it being ripped out caused a second hole. They decided to place the button then and its been ok. Seems quite a bit tender to the touch so I will follow up again on Friday. Life is not complete if I don't run to Childrens twice a week. Dave and I also made a parental decision and cut back on the amount of time he gets night feeds and since we have shortened the time the vomitting has stopped. We also stopped the diamox via Dr. Duerst at the same time so not sure which helped it to stopped. With that Simon is taking in a little more food and not gagging at all when he swallows. He started speech/feeding therapy today. Hope and pray this is the start of him loving up food. We'll see. Yesterday at clinic when things seemed to be overwhelming and I felt very alone (my sister had the girls and they were having a wonderful time and dave was at work)I had a very pleasant surprise when I ran into one of Simons stem cell nurses, who happens to live not too far from us, and we offered her a ride home. Sandy your company and conversation made my day and it was such a welcome sunny part to my day, thank you for your peaceful presence. You are always such a comfort to me. So see in it all the best things are the people who make up life and how they have come into your life, those things make the difference in the day. Vntrs due to arrive tomorrow. I'm holding out for them to be better but Simon seems to be holding his own at 20%. You Go Simon. Hes a joy as are his sisters. Alot of people ask me how hes doing developmentally. I just want to say we are very pleased with Simons development. He is small for his age but he is vocalizing, not saying words persay, but showing likes, dislikes, getting mad, tug-a-war with his sisters over toys, sitting, putting weight on his legs and waving, wildly clapping and very slowly learning to eat. So we are very happy and know he will be ok. He is a gift and a special boy that will prevail and be great. God Bless you all. Kiss those around you and if you keep putting off doing something for someone you love, do it tomorrow. I lost my aunt Helen today, she was a very beautiful lady from the inside out and I hurt for my grandma who lost her only sister. I kept wanting to send her photos of the kids with a note but daily stuff took up my time. Don't put things off today. Keep the faith and the prayers coming we so appreciate them. Tracy and Dave