Today

Sorry that it's taken so long to get to my long promised post. I hope that NO ONE misconstrues this as a vacation. Granted that's what I try to make this for the kids but by no means is this stuff relaxing!!!

We came down to SLC yesterday and was fortunate enough to stop in and see our dear friend and neighbor Pamela Lynn. She is on the Bone Marrow Transplant Floor and has a beautiful view from her room. She and her husband seemed really tired and so we stayed for just a moment. I was so good and uplifting to see her. She is truly an inspiration and we are so thankful we could stop and say hi!!!

Dylan and I were up at Primary Children's at 6:30AM. We got in, in good time and he really handled the whole thing a lot better than I was expecting or for what he has done before. He did have a harder time coming out of sedation, (he couldn't quit throwing up) and even Zofran didn't seem to help much. So we went and saw his neurosurgeon. Dr. Kestle said that he thought the scan looked pretty good. He saw fluid in Dylan's surgical space but that it wasn't abnormal. I was so relieved to hear that because Dylan has been regressing some and it's great to know that it is not a physical brain problem. The tough part is is that we still have to figure out what the problem is. (He can't remember words like cracker or eggs, calls people he knows really well by the wrong name and although we had our colors down at 98% before Christmas, we are only getting 50% correct now.) Perhaps that is what tomorrow is for. Another doctors appointment to see if we can't get a new take on things. I feel as if I have put this off way too long and am doing Dylan an injustice by not working on his behalf to get every possible bit of help for him. 

Anyway after the neurosurgeon, we came back to the hotel to pick up my mom and the other kids, then we took off in adventure. We went to Provo and found my great-uncles headstone so that we could take pictures to bring back and show the rest of the fam. We went to the Provo Temple and took pictures with the kids (except Dylan who was asleep) went to the MTC and took pictures of the kids(except Dylan who was asleep) went to Deseret Book, went to the Mount Timpanogos Temple and took pictures with the kids (except Dylan who was getting crabby) found our way to Cabela's which the kids loved, went to Cafe Rio (which the kids hated) for dinner, went to visit another neighbor friend who just came down here on an adventure of their own before we finally made our way back to our hotel. We lost the van keys down the elevator shaft (which we really hope to recover in the morning), fought with Dylan who was becoming increasingly more combative, bathed the kids, had milk and cookies (yes....even after the bath), fought with Jared for 45 minutes for him to fall asleep and now I'm venting on the computer in hopes that I can sleep past 3:30 (which I couldn't do this morning). Tomorrows activities include but are not limited to the Dr's. appointment, making sure that MRI reports and initial evals are all faxed to correct destinations, and somewhere in there, back to school shopping. Taylor told me that I could pick out her clothes if she could pick out the backpack. So that's our agreement. We'll see how that goes. Sorry to all who have tagged me. I will get to them!!!

Thank you to all who have prayed or thought of us. On trips like this, you really need all the help you can get.