Taking Elizabeth to Longwood

Wednesday. The garden railway is back at Longwood, so Aidan wants to go every day. Today we took Elizabeth.

Making Movies

Tuesday. Aidan and Amy made a movie. To check it out go to:
http://www.youtube.com/watch?v=lhGC3MaSetI

Playing Hookie

Aidan was finally well enough for school! But Ali and Lizzie were here, and he was not going to go without a fight. So we took a field trip to the Herr's factory instead. We saw pretzels, tortilla chips and potato chips being made, and we even got to sample hot off the conveyor belt chips. Mmmm. Aidan preferred pretzels of course, so we purchased a bag at the gift shop (and some peanut butter pretzels for Uncle Chris).

After a morning of cousin time, Aidan was ready for school, so he spent the afternoon at art class. After that was music therapy. He had a full day!

Pancakes

Sunday. Aidan and I slept in. Big time. Amy arrived at 10 and got us out of bed. I headed into Philly

to help some friends, and she and Aidan made breakfast. Here are a few shots of the process. Of course, there is a "Pots and Pans" interlude. Enjoy! Note his expression in the spatula photo. He said to Amy, "This tastes so good, I can't keep my hands off of it! I think I'll eat all of them up!"

Constructing a Medical Cart

Friday/Saturday.

Aidan's big activity on Friday was constructing a medical cart. It all started in the morning... We woke up in a leisurely manner. He read a toy catalogue (see first picture) and found a $44.00 medical cart he simply could not live without. I suggested we try making one. Remarkably he was amenable to the idea, so we ventured forth in search of raw material.

Our travels took us to the barn and to Nini's house. Ultimately we settled on a plan to construct the cart out of cardboard and other materials left over from his party. We began our work by studying the prototype (see second photo). Aidan drank yogurt all the while (see yogurt cup in pics 1-2). Then wham bam allacazam we had a medical cart (see photo 3 titled, "lalalalalala" and, on a more serious note, photo 4 titled, "satisfaction").

Amazing thing was, Saturday (medical carts raineth down) there was a knock on the door. Francisco (cameo in "Aidan Saws Wood"), had heard tell of Aidan's cart from Maria, Mauricio and Juan who had stopped by the night before. He incidentally had first heard of the cart when Aidan and I went looking for wood at the barn. I digress... So Francisco decided to make a cart himself. This one of course was far cooler than the one we had made - in that it was made out of wood and had real wheels where ours just had felt pads on dowels. So one thing led to another and we spent the late afternoon out in the driveway painting cart #2. (Sorry no pics. Instead, please imagine two tiered now-black cart on wheels, paint spots on the driveway, etc...)

Beatles Rock Band with Amy and Dan

Aidan is still sick and house bound (more or less). He did manage to move his video gaming party to "Dan's house" tonight with a little help from Amy. Amy tried to get him out of his pj's before they left. She got his shirt changed. The result is his spanking Ringo rock look.

Goodbye

Aidan said goodbye to his dad today. That and being sick made for a pretty quiet day. His dad has gone back to Belize but hopes to visit Aidan again in a few months.

Then Again

Another fever. Prone on the couch once more.

Ever So Much Better

Aidan has had a phenomenal response to the Megace! Now he's begging for his favorite foods - no more begging/bribing him to eat! His activity level is up too. Today had silly time with cousins, rode his bike, played tennis and now we're having a dance party. Awesome fun.

Official Scan Results

We had an "official" meeting about Aidan's scan with his CNMC team yesterday. The results are encouraging: the lesion on his spine is smaller. The site of the cranial lesion enhances on contrast without obvious sign of tumor, presumably because of scar tissue. Now we wait and watch. Aidan will have new scans every 3 months for the foreseeable future. Meanwhile, he began taking Megase (as an appetite stimulant) this afternoon. So far so good. He ate well at dinner - spontaneously (no nagging needed)!

Last night we had dinner at Suzanne's. She gave Aidan a remote hover craft which he loves. Here he is playing with it by the pool; the goofy expression is a sign of his enthusiasm.

A Lot of Time in the Car

Aidan had a fantastic bulking dinner last night (1.5 cups drinkable yogurt and a plate of french fries). Then we came home, and I attempted to brush his teeth. Must have touched a ticklish spot, because up it all came bubbling and frothing out of his mouth and all over the bed. He fell asleep with a totally empty stomach. Not surprisingly he was too tired for school at 8:30 this morning. So after I drove him there and we sat on the bench "discussing options" for 20 minutes we returned home. Only between the time he woke up and returned home, he drank another 1.5 cups of yogurt, so he was perking up - much like a dry house plant does about an hour after you water it. So we went back. He stayed 2 hours! Meanwhile I sat in the car (a Prius hybrid - or a "hippie car" as Nick calls it), power off. Only I turned it on to put the window down. Though I turned it off again, I did not open the door - since I was sitting in it for two hours. So when I went back in to get Aidan 2 hours later, I couldn't put the window up. Got Aidan, called AAA, called MOM... Long story short, it seems I may have inadvertently run the battery out (so the guy at the dealership tells me. Supposedly the operating system continues operating until the door is opened. The dealership incidentally is where the car is tonight.) After another couple of hours in/near the car, Aidan and I returned home to pack for DC. Now hopefully you see where this story is going... We are back at Carolyn and Carole's house. Another follow-up tomorrow. We'll meet the new oncologist at CNMC and finally get some feedback and treatment recommendations about Aidan's scan from last Thursday. Whew.

After School

Aidan lasted 2 hours at school today. He seemed to have a great time but was totally wiped when I picked him up. Here he is right after he got home having a snack and some veg time. He wanted to watch PBS Kids. When the alphabet song came on, he jumped up and grabbed his mic.

First Day of School

Aidan is on a roll. He went to school this morning for 1.5 hours, had a 1 hour audiology appointment, and finished with 1 hour of music therapy. In between, he ate chicken nuggets and drank coke, water and yogurt. He finished the day very tired, but without a nap at 9 PM!

His audiology appointment was in KOP where I was able to work in some back to school shopping. I bought him a sweet, extra thick fleece jacket which he said he didn't like. I asked him why, and he said, "It feels like Nini's dog bed." Returned it right away.

Food Glorious Food

Facts: intake up dramatically; energy up accordingly. Drs. appointments where nasogastric tubes and gastrostomies were discussed? Blatant threats of such? You decide.

Quiet but Good

Aidan had another lounging day - mostly in bed, though he did go downstairs for a few hours in the afternoon to watch Lady and the Tramp and play with trains. The good news is that he ate/drank a little! 2 cups of drinkable yogurt, Doritos, watermelon, and a popsicle... The best intake he's had in over a week!!

News

The MRI looked good, and both the radiation oncologist and general surgeon recommend giving Aidan more time to resume normal intake! So no surgery next week. We will try to meet with his CNMC team on Thursday. More news to follow...

No News

Aidan's scan went smoothly. He was calm and focused. We haven't gotten results yet and may not until next week - an unfortunate consequence of using NIH. Aidan's primary medical team is at Children's. They will be giving feed back and making treatment recommendations, so we must wait until they've received and reviewed the scan.

Meanwhile, Aidan had a GI consult today to discuss a G-tube (gastric tube or gastrostomy) to address his poor intake. His appetite and intake have bad enough that even hydration is becoming a challenge. Found out today that he's down to the 20th percentile for weight (down from 90th) with a body mass index around 13 (normal is 18.5 to 24.9). We have another consultation set up for tomorrow afternoon with a general surgeon to discuss g-tube placement. Hope that it can be done by early next week.

A Better Day

Aidan had appointments at NIH this morning: hearing screening, physical and labs. His hearing is stable! No significant findings from the physical other than dehydration. No surprise given his recent intake. He received a fluid bolus and has been much perkier since! (Note the silly faces.)

We're at Carolyn and Carole's for some down-time this afternoon. Aidan and his dad have been playing X-Box and eating Doritos and orange popsicles! (Any intake is good intake right now.)

Afternoon on the Beach

Aidan had a great afternoon on the beach flying a kite and skim boarding (in the sand)! We're back home just for the night. Tomorrow we go to DC for appointments at NIH and Children's. Wednesday Aidan will be doing follow-up evaluations at NIH. Thursday he has an MRI.

At the Beach

Aidan loves being at LBI with Jo, Carole and his Dad. He has spent his time mostly doing quiet things - watching videos, lying in the hammock and listening to stories and music. His energy is noticibly lower now. Even playing with trains seems to tire him quickly. He did take a walk to the beach this morning, and he played t-ball during the afternoon. His friend Christopher has been over to visit yesterday and today - a bright spot in each day for him.

Back on LBI

No fever today! So back to the beach for the long weekend. Aidan plans to play t-ball and soccer on the beach this weekend. He's hoping to see his friend Christopher too. He took two naps today - now he's up at 11:20. Tired but excited to be on LBI!

PS Complaints from a blog reader... No mention that the Tooth Fairy came to see Aidan last Sunday! A new wooden railway engine was in the haul.

Blah

Aidan's fever was lower today and he otherwise seems fine, so we're not going to go to DC tomorrow. Yeah! We spent the day doing quiet, restful activities (see photo). He's saying, "Blah." Another day spent prone, and hopefully he'll be ready for a long weekend at the beach.

Sick Again

Almost had to go to the hospital again today. Aidan has been running a fever since the evening of his party. Last night it was over 104. After some back and forth with his medical team, we're going to wait it out. Assuming he gets no worse, we'll take him down to DC to the brain tumor clinic on Thursday. Meanwhile, if he does get worse, we'll have to head back to the ER.

No pictures from today, so I'm posting a video from the party that I had trouble uploading last night. Thanks very much to Tom and Barbara for providing us with live ones for the party! They were a big hit and made the perfect sound effects - sounded just like an episode of Shaun the Sheep!