Daniel's Update, Week 24


Sunday, October 12th, 2002 (DF) Yesterday was one of the lazier days that my Mom and I have spent in a long time. I think our official excuse is that it was raining outside so we decided to stay inside basically doing nothing.

We did take a trip to Quintessence to get lunch, and also stopped at the Stewart's Store to pick up some milk.

(TF) We are now a mere two half gallons away from getting a free carton of milk at Stewart's. The clerks at the local Stewart's now recognize us (you think the buffalo helmet helps?) since we stop by about every other day.

I would like to reframe our day as a time to center ourselves and reflect on our surroundings (sounds so much better than, "We lounged around in our pajamas until about 1:00"). We also caught up on our laundry so we are the cleanest kids in town.

(DF) Mindy called and we talked for nearly 3 hours. But it didn't seem that long because we had lots to talk about. My Mom started to get envious of my time so I got off the phone and then made pizza for the both of us.

(TF) Actually, I poked my head into the bedroom and asked (after about two and a half hours) if Mindy had perhaps won the lottery. Apparently Maryann pays for the phone bill which equates to being "free"...don't you just love the logic of youth?

(DF) After dinner we logged on to harrypotter.com and both enrolled at Hogwarts. We were both sorted into Gryffindor but suspect that everybody gets sorted into that house. And we both were given wands with a core of unicorn hair. I forgot the type and length of the wood, however. You get to experiment with the wand after it's given to you, and my Mom could do the lumos spell. And I couldn't. BAH!

Then we watched the Mrs. America pageant on PAX. It's funny because they all were super duper young and skinny and most of them were prettier than their Miss America counterparts. Their choreography for the dance routines was extra basic and I told my Mom that she should compete next year. Too bad we missed the opening where they all dressed in costumes that reflected their states (i.e., a lobster for Maine, flowers and all sorts of outlandish stuff). To catch what we missed last night, we're going to head on over to mrsamerica.com. Please note, however, that my Mom and I both picked the winner: Mrs. Alabama. She won the Mrs. Congeniality Award and wore pretty much the only tasteful dress. Hooray for the South!

(TF) I suggested to Daniel that I wait for one of my children to get married and have a baby so I can compete in the Mrs. Grandmother America. Instead of evening gowns...nightgowns. Instead of an interview question...who can count and swallow their daily pills accurately. Instead of bathing suits...ANYTHING. (We obviously have too much time on our hands.)

(DF) Afterward we watched the Angels beat Minnesota. We caught them in the turbo exciting eighth inning and stayed all the way 'till the end. We kept looking for Michael Hawkins in the crowd but sadly he was probably still in Placentia with the AHS band. By the way Mr. Hawkins, we saw a lot of stuffed monkeys in the crowd. We heard the announcer say something about rally monkeys, but is that really their significance? My Mom and I thought they were cute.

Then we went to bed because we had had way too much excitement for the night!

(TF) The Angels game really was exciting and we were pleased to see the Cardinals had also won. (Although for one brief moment Daniel thought the Angels were playing the Cardinals...just a momentary lapse.) The Angels cap now rests on the headboard of his bed for good luck. After the bone plate replacement on the 21st Daniel will be starting hair growth from scratch again and all the baseball, football and Harry Potter hats will be back in daily service.

Take care, have a peaceful Sunday...love to all, Toni and Daniel

Sunday, October 12th, 2002 This will be short as Daniel is already asleep and it is nearly 11:30 here.

Another low key day...Daniel took his osteoporosis medication in the morning but before he could take the anti-nausea medicine and eat breakfast he threw up. However, it didn't stop Daniel from having a good lunch later without any side effects. We had a chance to talk with Jeff and Mary Ann (two separate calls) so we could catch up in person with California news. Great to hear from friends.

The highlight of our day was a wonderful dinner with Edith and Ian Leet from Emmanuel Baptist Church. We met Edith through Roy Donkin (the minister who is now a Santa Barbara transplant). The Leets picked us up about 4:30 and took us on a driving tour of Albany first. This is definitely a city worth seeing! There are so many beautiful churches and the Capitol Plaza is amazing. There is a building called the "Egg" that has to be seen to be appreciated. Lots of gorgeous tree-lined streets, beautiful parks, the Hudson River, and two-story homes with inviting porches. We are planning on visiting the museum that is part of the Plaza later this week. The architecture on all the different buildings is intricate, varied and well-preserved, which gave us a great feel for the history of the city.

Our drive was followed by a lovely dinner complete with homemade apple pie to die for! (I know we go on and on about New York apples but they really are terrific. There are about 18 different varieties at the local stands and apple season here has been a delightful surprise). When the Edith and Ian dropped us back at Fisher House they gave us some apples and apple cider donuts...such a treat. The hospitality tonight from the Leets reflects how warmly we have been received in Albany.

The only moment of brief alarm was when Daniel exited the car and fainted. I was able to break his fall but it was sudden. We're wondering if he either became too warm in the car or possibly some of his medications need to be adjusted. We will check tomorrow when he does his pre-admission work up.

Emilie Richardson arrived later this evening to spend a few days with us. Now that we know where to go in the city we are hoping she can stay long enough to see some of the sights. We have also promised her many naps, since that seems to be our forte.

I'm off to follow Daniel's lead and call it a night. Take care, sweet dreams and may your week be peaceful. Love, Toni and Daniel

Tuesday, October 15th, 2002 (Monday and Tuesday Combined) Yesterday we spent much of the day at Albany Med doing pre-admission for the bone plate replacement on Monday. It took about three and a half hours but now Daniel is all set to go. We don't get an exact time until Friday, but we're hoping for morning. Jim arrives late Saturday night so we will have a day to spend with each other.

The aorta surgery has been changed to Wednesday, the 30th of October. Wow, it is amazing to think Daniel has reached this stage. As far as we know Daniel will come back to Fisher House in between the two surgeries, but we'll let you know as soon as we get all the information.

We also bought a blood pressure cuff so we can measure Daniel's blood pressure. The fainting may have been connected to low blood pressure so Dr. Perez-Tamayo, the cardiologist, took him off one of the medications and gave me some parameters on blood pressure numbers so I can "tweak" the other one if I needed.

We stopped by SICU to say hello after the pre-admission tests. It is always so fun to see everyone. The nurses were wearing squirt-gun Halloween necklaces and Tim, one of the nurses, gave Daniel a skeleton head so he could fight back. All evening Emilie and Daniel took turns squirting everyone in sight...but I put my foot down when they were conspiring to squirt the waiter at TGI Friday's.

The Spectrum theater beckoned us, so we decided to see White Oleander. It is a powerful and well-acted movie, however, we do think we need to find a comedy for our next outing. We can only handle so much angst at this time in our lives.

Once back at Fisher House we climbed into our pajamas (our favorite outfits) and managed to find Gymnastics and Cheerleading competitions to complete our evening. Do cheerleaders take a course in how to bob their heads and look perky?

This morning we were up bright and early to head to Sunnyview for PT. Since we were out of raisin bran I managed to whip up some scrambled eggs with cheese for the three of us. Unfortunately I suggested Daniel drink a Boost in the car on the way to Schenectady, (he weighed in at a mere 116 yesterday), and he left his breakfast at the side of the road. (This could also be negative reinforcement for cooking...perhaps my meals jinx his stomach.)

Daniel and Emilie went to the gym to play with the medicine ball, foam and balancing tricks while I did my usual treadmill. Afterwards Daniel seemed to have regained his appetite so we zipped through Burger King on our way to treat Emilie to apple cider donuts at our favorite stand. The leaves were breathtaking, especially on the little country roads, and with the sun shining and the temperature in the low 50's it was just about perfect. Now both are napping before we decide what our afternoon adventure will be.

Now it's nearly bedtime (and this is now Daniel writing) and our afternoon adventure turned out to be watching Britney Spears in Crossroads. Although we didn't finish the movie, we did get to go have dinner with AnnMarie and her sons Zach and Jacob. We traded stories about car accidents and dying pets.

AnnMarie led us to the Broadway train station where we dropped off Emilie for her Amtrak ride to Bard. Before leaving, she and my mom got very poor hot chocolate that was clumpy. Fortunately they both got lots of whipped cream so they were turbo happy. Coming back we got lost and drove around Albany for a while until stumbling across St. Peters Hospital. My mom just told me right now that it was an adventure but I think she is a few crayons short of a complete Crayola box.

Now it's time for bed. And Diana Krall will sing me to sleep. Oh, Mr. Hawkins, congratulations on the Angels making it to a very Californian World Series. We will be with you in spirit and once my bone plate is back in I'll cruise around Albany with the sweet red cap.

Love to all, Daniel (and Toni)

Wednesday, October 16th, 2002 (TF) We awakened to a day of wind, rain, cold and a prediction for snow on Friday. If it comes true we will have been in Albany for the last snow of the season, and the first snow of the season. I can hardly believe it.

A quick breakfast and we were off to Sunnyview for Daniel's PT. Besides the balance exercises he did some therapy for his ankle and got a great big green rubber band-like thing to take to Fisher House so he can practice here. I did my usual treadmill next to four very gray-haired ladies going twice as fast as I was without breaking a sweat. They were still going strong as I nodded and left.

Daniel and I stopped by Starbucks (no surprise) on the way back to Albany. We received two Starbucks cards from the AHS counseling staff yesterday and we are very happy campers. Plus, now we feel it is our destiny to keep the local franchise afloat.

Afterwards we headed for Staples to pick up some paper and a couple of umbrellas, Joanne's for some scissors, Blockbuster for some movies, Applebee's for lunch and back to Fisher House. Daniel is down for his nap and I may just join him. It is a perfect day for comforters, hot chocolate, and a fire in the fireplace.

The neurosurgeon called yesterday and he wants to see Daniel on Friday morning for a consultation and to run more blood work. Until told otherwise I am going to assume it is standard procedure and that Monday's surgery will go as planned. After seeing him we will have Daniel's last PT until after his operation.

Oh, we forgot to mention we have another new member in our extended family. Annabelle Merchant was born last week to my nephew Andrew and his wife Amy. This makes two new baby Merchant's in the last month. Both Moms are named Amy so we refer to them as Amy 1 and Amy 2. We expect Abby and Annabelle to become great friends...both are adorable!

Thursday, October 17th, 2002 (TF) A nice slow start to our morning...we lounged around in pajamas, had a leisurely breakfast, and took each other's blood pressure. With mail call came a bunch of packages, which were a wonderful surprise. From Ashley Novak (Daniel's Speech teacher at AHS) we received hand-knit scarfs. Soft, beautiful, colorful and just in time for some really cold weather. From Linda Hou (french horn extraordinaire from AHS) Daniel received a USC T-shirt and some great books and literary magazines. (My mother went to UCLA but I will admit the magazine of student work was pretty impressive and now we know the students at USC can read AND write.) Finally, Tom Forbes (orchestra maestro from AHS) sent us a Halloween party in a box. We are going to bake the cake, complete with orange and black decorations, for the folks here at Fisher House as a surprise. Tom included lots of candy and goodies but the piece de resistance was a three pumpkin headband with eyes that light up for me! With Daniel's hat and my headband we are truly an unforgettable (and classy) team.

We just had to have a field trip to model our new fashions so we dressed in our finery and took the rental car for an oil change. This was actually already on today's schedule, but we were the best-dressed in the waiting area. Afterwards we dropped in on SICU, hoping to catch the ever elusive Emily Sweeney, but she had traded shifts. However, we ran into Dr. Socaris, Patti, Sylvia, Mary, Bernie, Annmarie, Lou, and bunches more. Dr. Socaris had pictures of her very own Greek wedding (just last month) and she looked stunning...(we also discovered she has cleavage, a new look coming to the SICU floor perhaps?)

After all the excitement I brought Daniel home for a nap before dinner. He is sleeping soundly and I decided to sneak out and start the update early, since tonight is Friends. I cooked dinner again last night, (chicken, rice, spinach souffle) and unbeknownst to Daniel it will make a reappearance tonight. He is still pretty skinny but not for lack of trying on both our parts. (And for all of you who have offered to donate pounds, just remember I'm first in line.)

(DF) Yesterday my mom rented some movies. Last night we watched Monsters, Inc which was funny and cute and surprisingly poignant. Tonight we tried to watch Death to Smoochy on Emily's recommendation. Was the movie good you ask? Um, not so much. We turned it off just shy of the 30 minute mark because it was crass without being funny. Instead we're going to watch Friends, Survivor, and Will & Grace. And then tomorrow begins my education with Flashdance and Footloose. I think I've missed out by never seeing them, and my mom agrees.

Goodnight y'all and hope you have a good day. ~Toni and Daniel

Friday, October 18, 2002 (TF) Bright and early this morning we trekked to Albany Med to have a consultation with Dr. Emrich, the neurosurgeon. Daniel has opted to have his whole head shaved and the surgery is scheduled for 10:30 a.m. on Monday. The surgery should last about 4-5 hours (I don't know if that is just the bone plate part or the plastic surgery on the bridge of his nose part too).

After looking over the list of medications Dr. Emrich reduced the list and told us all looks good. The extra blood work was ordered because Daniel had some antibodies and they wanted to cross-match and type his blood for a transfusion, if needed.

We raced to Sunnyview for PT where they wore Daniel out with balancing, ankle, and knee exercises. Since he won't be doing PT for about two weeks he was discharged from Outpatient Care. He will either do some at Sunnyview after the surgeries (until he is ready to travel) or finish in California.

We returned to Albany Med for the actual blood work and after walking Albany Med from one end to the other twice Daniel was fading fast. However, he really wanted to see Emily Sweeney so we hustled up to SICU where he walked in without the walker to surprise her. She looked radiant as ever and said she had heard through the grapevine of other "Daniel sightings." They had a quick visit and exchanged hugs before Emily had to return to work and Daniel had to rest his weary knees.

We arrived back at the Fisher House where Daniel pretty much made a beeline for the bed and dropped off instantly. He has been sleeping ever since...for about three hours.

(DF) My mom and I just watched Flashdance. I feel more complete now having watched such a classic. And I'll have that theme song in my head for days and days now. *got a feeling . . . keep believing!* It was a fun movie and my mom helped explain the parts that I didn't understand. Like differentiating between the girls because with big bangs they all sort of look alike.

Earlier tonight we ate at this restaurant called Justin's. The music they played was really good: cool covers of the Beatles, Coldplay, and the Doves. And then we paid our homage to New York food chains by stopping at Dunkin Donuts. Which has nothing on Krispy Kreme, my all-time favorite.

Well, my mom and I woke up SUPER early this morning so we're going to head off for an early bedtime. Goodnight ~ Toni and Daniel




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