Monday, Sept. 24th - Good Days

Hi Everyone. My sister has asked me several times to update the blog so I thought I'd better do it. On Friday, Nonni bought Alex a Wii video game and life has not been the same since. It's alot of fun and quite easy for Alex to use. He was playing with it on Saturday with his cousin's cousins and someone described the scene as "Alex is laughing from his toes!" I must agree it was so wonderful to see him engaged and happy and laughing. Saturday was spent with Steve and some incredible friends building a fence. I picked up Steve's sister, Christina, at the airport and we enjoyed the last day of summer on the porch.

Sunday started off with a call to hospice for oxygen. We have 7 canisters of O2 in this house and every single one was empty. Alex looked pale and would not talk because he "did not feel like it" so we were told to call 911 and before you knew it you could hear the sirens and our house was full of firemen and then paramedics. It was not how anyone would choose to start their Sunday morning but what can you do. Needless to say, all of the portable tanks will be kept full from this point forward.

Alex started his Valproic Acid infusions on Saturday. He gets them every eight hours and I have to say that schedule is causing alot of exhaustion for me. I have to get up at 4am to take the stuff out of the fridge. Then at 7a I have to be awake enough to mix up the concoctions and administer the drug. This happens again in the afternoon then at 11pm. Each infusion takes 45 minutes and it is imperative that Alex not be off his Medazolam for much longer than that so I have to stay awake while it is going on.

Last night, Alex and Zoe took a bath together for the first time since he got his mediport in July 2006. Zoe loved it. Alex was a bit tentative but he finally started playing. He thought he'd have his pump (Medazolam) hooked up to him during a bath so that is why he put it off for so long. Once I figured that out then it was much easier to convince him to get in the tub.

Yesterday was also the first Play, Paver and Prayer party. Our house was full of so many friends and love that it infused us all with energy and joy. Some great stepping stones were made (thanks Herndon-Chadd family) and a lot of work was completed on the play area too. The water feature was set up and it is so awesome!! It has beautiful lights at night and is so tranquil and soothing! I love it. Our friends also made prayer flags for the four temple chimes in the front of the house. Steve is out buying string now so I can hang the first batch up asap!

The party will continue next Saturday and Sunday and I can't wait. It was exhausting but worth every bit of our energy and once again, Alex had a great time. He even went to the Home Depot twice with his Dad and friend Mark!

So after the first night of sleeplessness due to a grown up pulse ox machine on a kid's body; we took Dr. F's advice and unplugged the darn thing. Sleep has been much better. And Steve and I now switch nights in the "big bed" with Alex and the nursery with ZG. No matter where you sleep, things still wake you up, but at least some sleep is possible.

Today found Alex with lots of energy and smiles. We had talked about going to the Science museum but that did not happen. Tomorrow the "Flashes of Hope" photographer will come by and we will have a family photo session. I can't wait. They did a session with Alex before but ZG was ill and could not come to the clinic.

I want to thank you all for your support and prayers. I believe I am only standing thanks to the strength you send me and the energy I sap from anyone that will hug me!

I have thought of something that would help us out alot! We need someone to walk Roxie and Toby. Roxie is such a wonderful dog, but she is a puppy and a high energy one at that. We would love to work something out so she (they) could get walked in the AM and PM. Let me know ( fightthebump@comcast.net ) if you are available.

Finally, I want to thank Don and his colleagues for their generosity. Your gifts were overwhelming and such a blessing. May you receive tenfolds the prosperity in return.

Okay, I hope that is complete enough for you (Stephanie)!

Love and hugs,
G