Thursday, April 5th

Well, yesterday went well. The assimilation at Radiation Oncology was about an hour and a half and Alex slept all the way home. Zoe had another play date with Malena and they are becoming fast friends. Alex did have a lot of trouble with his swallow yesterday. Since the MAW trip we have noticed that his drool is worsening and at night he was choking more even when he had Benadryl. Well as of yesterday, he officially choked during his waking hours while eating and drinking. These are noy little chokes either, they are very hard on him and made him very tenative about eating or drinking yesterday. The doctor says that once the steroids kick in (started at lunch yesterday) that this will improve. I have to say though that he was able to eat his breakfast and drink one Spidermilk without choking this morning, so maybe the docs are right.

Well, radiation/chemo officially starts Monday. We have had so many offers of support but I really don't know how to respond. We just don't have any idea how things will be during this "new, new normal". It looks like housework is taken care of for a while. YIPPEE!!! And some parents are pooling funds for tuition assistance at the old school. WOW!!! I have offers for dinners, etc and have just signed up for extra rich milk to be delivered every week for the kids. I do have some thoughts on ways to help. Every once in a while we need someone to walk Roxie. She is used to being walked for an hour in the morning and half an hour in the evening. I can foresee this as being a challenge to continue and maintain in the coming weeks. She also needs to go to obdience training. So if anyone is available (at our cost) to actually take her to some classes, we would be most grateful. She is now 18 weeks old, about 40 pounds and desperately needs to learn some manners. She has the potty training down and is a smart dog, but still very puppy and sometimes she can really be alot to handle. Finally, I would like to set up more play dates for Zoe until they find a spot at the old school. She is going to be so bored if she is tied to this house while Alex gets well. She is so over me and my face! I hope our kid swaps with Malena will continue on Wednesdays and Fridays but that leaves a lot of times for other friends to visit or be visited. Finally, if someone could just shadow me and help me keep my head on straight that would be GREAT! I really feel as if I am losing it. I can't remember anything. I have no energy for anything (need someone to get my butt in gear and exercise) and I really just want to sleep! Is that bad?

So Steve had beers with a friend of his that has actually walked this walk. I think it was good for Steve to have this sit down and talk. He came home and said that he was told "there are no wrong decisions". I had to get clarity on this point but agree. It is comforting to know that we won't be judged and criticized by families that have been through this.

A nurse came by the house yesterday to teach me how to care for Alex's new Broviac line. Alex did not like it at all, but he calmed down pretty quickly once he realized what was actually happening. He is very sensitive to sticky so the tape used to hold the gauze over the line on his chest is quite upsetting to him. I still don't know how chemo will be handled but I think it will be done at home. I have a call into the doctor's office to find out more info. I also want to get Alex back on Oxygen. His color is sallow and he is acting the same way he did before they put him on O2 before (easily aggitated, etc.).

Well, this was supposed to be short and sweet. I don't think I accomplished either. Until Tuesday morning, I had no idea Easter was this Sunday. That kinda made me very mad. Usually I would have the house decorated and plans made, clothes bought, etc. But to date nothing has been done. I hope to change that today, but errands may get in the way! Oh well, there is always 2 more days after today! Wish me luck!

Okay, TTFN, have a great Spring day!
God bless,
G