Week one completed. Five more to go

Some mornings I look in the mirror and I think I look 100 years old!  This whole situation sucks the life out of me sometimes and I don't have the motivation to fix it by getting my nails done or my hair done because my only priority is to sit at Ty's side 24/7.   In fact, it had been SEVEN months since I had a haircut and the ragged ponytails with crooked glasses that I've been sporting are not the best look for me. J  Then, yesterday I received the best treat!!  A great friend of the family, Liz, came to my house and cut and highlighted my hair.  I feel like a new person!!  Gavin also got his first haircut.  It was down to the middle of his back so it was about time.  He looks like such a big boy now!  I have pictures to post as soon as I have a chance to upload.  Next I need to get a new pair of glasses.

I brought Ty upstairs later in the day because I had to try on clothes and he was so sweet.  I would try something on, then bring the clothes over to Ty and help him to point to the ones he liked best.  His speech has been absolutely terrible over the past two days (to the point where we often can't understand the difference between yes and no), but our little fashion show turned out to be a nice distraction for him.  At one point he pointed to a black dress and I smiled and said "don't you think that made me look chubby?"  He said, very loud and clear, "No!"  He is the best boy in the whole world who will make the greatest husband some day if God gives him the chance J

Ty and Gavin also received a very special package all the way from a ministry in Louisiana a couple of days ago.  It's amazing how far his story has travelled.  The package included two very special stuffed turtles that are intended for small children with chronic illness/injuries because they are the perfect size and softness to use as positioners or to elevate their legs.  The first turtle was used by a beautiful little child named Sam who had a near-fatal drowning accident and his favorite turtle was used to prop up his legs while he was in the PICU from March - May 2007.  Ty and Gavin both loved the gift and we use Ty's turtle in the same way to get him comfy on the couch in front of the TV. 

We have an appointment with Ty's doctor's after his radiation treatment this morning and we are very anxious about it.  Of course, the Hutchinson Parkway and the Bronx River Parkway were both closed due to flooding this morning so our drive in is miserable.  Anyway, Ty has improved drastically in some ways, but he suffered rapid declines in other ways.  His headpain and nausea are practically gone!  We have waited four months for Ty to have a day without headaches again, and finally we are there.  It is such a relief, but it doesn't come without a price.  As a trade off, his myopathy has gotten worse, his speech is gone, he can't take anything by mouth - not even a drink - and he is very depressed about it.  He cries so much it is absolutely heartbreaking.  Lou and I hope to hear that this is expected and that these side effects will diminish over the next week or so.  We are just very worried.  I will be sure to post an update later this afternoon to let everyone know what his team says.