Thursday, December 27, 2007

DR 5: Stem Cell Treatment

Back to my long-winded story. We woke up on Friday morning for Soren's treatment. We were supposed to be picked up at 10:30, so we cleaned up, had breakfast, and went to the lobby to wait for our driver.

While the kids and I waited, Aaron went to the room to warm up milk for Soren (that darn milk). Now, to do this, we have to heat the purified water in the little coffee pot provided. The coffee pot was not behaving well, spilling water everywhere. So, thinking he was running late, Aaron came to the lobby with lukewarm milk. As I mentioned before, Soren is particular about his milk temp.

By now our ride was 30 minutes late, so we turned on my phone to see if there were any messages. Well, we should have done this the day before, because our appointment had been changed, but my phone had died, so I didn't get it. Oops!

With more time on our hands, we returned to our room, heated the milk more, and got it into Soren before our new pick-up time. For the first time, all of us went to the clinic. Last time, Aaron came with me while Mo was at the hotel with her grandparents. But we needed Aaron's strength to help hold Soren down who, now that he's gotten strong with these treatments, resists getting the shots!

So in we all piled and had another E-ticket ride back into town to the clinic in La Romana. A storm came in just as we were getting unloaded, dodging the warm rain as we ran in. Dr. Rader and his wife welcomed us warmly. It was great to see them again.

We got into our room, but things were running really late. Some of our friends were in the next room, so we got to visit. And we came prepared with snacks and our DVD player. Once it was our turn, everything went as smooth as silk. The nurse who did Soren's IV did a great job. Soren wasn't happy with the shots in his leg. As soon as we were finished, a car was waiting and we had another exciting ride back.

We ended up finishing the same time as our friends and arrived back at the hotel for some much-needed, inclusive libations and pizza!

Last up, our return trip home!


Thursday, December 20, 2007

DR 5: Casa del Mar

When last I left you, we had gotten into our taxi cab. Now riding in a taxi in the DR is, as my friend Tammy puts it, an E-ticket ride. It's a 2 lane road. People pass a slow bus or moped piled with 2 or more people despite that there is oncoming traffic. We basically have to hope against hope that we weren't meant to die in a 3rd World Country while getting our son medical treatment.

Arriving at Casa del Mar, we met up with our favorite bell boy, who recognized us from trips past. However, our room wasn't ready. Desperate to jump in the pool and cool down, Mo and Aaron changed into suits while Soren and I hung out waiting for the room. I thought I had booked what they call a suite, which is really just 2 adjoining rooms with a couch in the second room. We always have to request 2 twin roll aways for the kids. Remembering this, I went up to the front desk. They assured me this was taken care of and that our room was ready. However, when I arrived at the room, I discovered that it was not the "suite" but a regular room with 2 double beds. Doubles just don't work for us. Soren ends up kicking the pucky out of Moira and hogging the bed, much like an insistent, but loving, cat.

Annoyed, Soren and I went back to the front desk. I showed the host my emails stating that I'd booked (at least I thought) a suite. They showed me counter emails (which I didn't have but do remember) stating the difference between a "grande" room and a "suite." Of course there was a considerable price difference! Now I was overheated, overwrought, and over it! I threatened to leave the damn place as I was breaking down (once again) in tears.

So they agreed to give me the same price and offered me a room to look at. I was escorted by our favorite bell boy and knew immediately that it was unacceptable. It was right behind the theater, which has noisy shows that go until midnight. I broke down even more in front of this poor man who was only trying to help. I told him I had to talk to Aaron.

Of course, I went to the pool and they had gotten out, looking for me. Desperate to find them, I was now shaking to pieces with tears just streaming down my face. I finally found Mo and Aaron, who sat me down (Mo stroked my hair) while Aaron dealt with the situation with a level head. He got us a quiet room for the low price. We got to the room, put Soren on the bed so he could finally stretch out after being in his seat for 4 hours. I then laid next to him and fell into a deep sleep. When I awoke, I had regained a bit of my sanity and the world looked a little brighter. And then we had dinner, which always makes me feel good.

Tomorrow, the main event, treatment! And I'm glad to say it was WAY less traumatic than this!


Tuesday, December 18, 2007

DR 5: MIA Airport

Our flight on Thursday wasn't until 11 am. So we figured we had to get to the airport at 9 am which meant we had to leave the hotel at 8 am which meant we had to get up at 6 am. Having not fully adjusted to the time change, it felt like we were getting up at 3 am. I actually felt fine. Little did I know that I would soon run out of adrenaline and dissolve into a puddle of goo.

When we awoke on Thursday, we were still a bit fearful of TS OLGA that we had seen the night before. We checked the news and saw nothing so we headed to the Miami Airport feeling cautiously optimistic.

For anyone who has been through the Miami Airport, you know what an amazing zoo it is. We arrived and checked our bags at the curb in a rather timely fashion. This was impressive since we were flying internationally and had deal with passports.

Then we went into MIA, which, as usual, was packed with people. But one thing I can say is that they have a designated area for People with Disabilities (PWD). We hopped in that line and got through quickly again. Smooth sailing, right? I should have known.

We got to the gate in plenty of time. I went to Starbucks for some iced tea and hot chocolates. I then returned with Soren's bottle, asking if they could put it in a cup of hot water to warm it. The ladies there put his bottle in the smallest cup. I asked if they could put it in a Venti. "No, we don't do that!" was the rather abrupt response. I actually know that they DO do that. I've had them do it several times before. But I was stuck with this dinky cup of hot water with my cold bottle in it. Needless to say, that water got cold quick and the milk was not warm.

So I returned and requested a Venti full of hot water that I would pay for. Even then I got attitude. I paid for it and then they wouldn't actually put the bottle in the cup and then fill the water. Instead, they gave me a cup full of boiling hot water. Well, I needed to get the bottle in and account for the water that was being displaced. Long story short (well, not really) a burned my hand, dropped the cup and the bottle in the trash, and cussed in front of these two older women customers who were just trying to put some sugar in their coffee.

This is where the breakdown began. All my exhaustion and now burning pain brought me to tears at the Starbucks stand. The poor ladies were handing me wetnaps, trying to help. The ladies behind the counter FINALLY listened to me and filled the cup WITH the bottle in it. They also supplied me with ice for my burned hand. As all this is happening, Moira came up to me to tell me that Soren just had a seizure. Plus it was time to board the plane.

So my great plans to tank Soren up were dashed as he was passed out and we had to pack up and get on the plane. This is, of course, when I saw various friends of mine from previous trips. I was a red-eyed, embarrassed mess trying to socialize with everyone. Ugh!

The terminal we were in didn't allow us to go directly from the terminal to the jet-way to the plane. Instead, all the "wheelies" had to line up for the elevator, which was about the size of a shoe box. Talk about bad design.

And instead of loading all of us first, we were loaded last. This is complicated for us since we are hauling so much equipment, now bonking into people as we boarded. And I have friends who always get the bulk head and they, since the plane was now full, they had no place to put all their stuff. But in the end, we got on the plane, which fortunately took off on time--no storm delays.

Soren eventually woke up and I pulled out the now luke warm milk (Soren is particular about it being quite warm). It looked a little chunky, so I gave it a shake. When it didn't blend together, I decided a new, cold bottle was in order. This time Aaron, who knew I had gone over the edge, handled the milk warming.

Getting into the DR was fine. Getting through integration, fine. Our luggage came out in record time. AND our taxi was there waiting for us. Huzzah!

Then there was the hotel...But that is for tomorrow.


Monday, December 17, 2007

DR 5: South Beach

We returned from our 5th trip to the DR yesterday. I'm going to tell this tale in stages, since there were many legs to this journey. But most importantly is that Soren's treatment went smoothly. But let's start at the very beginning...

We headed to LAX on Tuesday morning, making good time to the Hilton, where we parked our car. The tram came to pick us up and I saw that there was a ramp for wheelchair access. I didn't know whether to bother with this when a wheelchair bound woman came up and had the ramp brought down for her. After she used the ramp, I figured we should as well, which made getting to the airport all the easier (one less time hefting Soren and his heavy adaptive car seat).

We noticed that the woman had a number of streamlined chairs with her. We got chatting and discovered that she plays tennis on the Olympic team for wheelchair bound competitors. Through the years, she had traveled around the world doing this so it was great to talk to her about which countries were most accessible. We also talked about how she lives in a warm, sunny climate, having grown up in a cold, rainy and snowy one. It's something that I've thought about a lot, appreciating our California weather and an element to consider if we were ever to move.

At LAX, we got our luggage checked and through security without a hitch. One of the attendants noticed Soren's chair and took us to the wheelchair access route, where Soren and I both get personally patted down--always exciting!

Our flight to Miami was on time and went smoothly. We had scheduled an extra day in South Beach to see our college friend Ben. We stayed at the Courtyard by Marriott and, I must say, we were treated very nicely. When we realized they didn't have a fridge for Soren's food, they brought us one. When we realized the pillows were down, they switched them for foam since Aaron is allergic. And while we weren't on the water, we were in an area of town with a lot of easily walkable stuff in the area. Like the Madonna strip club across the street! Mo asked what was at that club. I told her naked ladies and she started cracking up.

We were also near EspaƱola street, which had shops and restaurants. We ate at Tapas and Tintos enjoying fantastic food and sangria. The next day, we went to Lincoln street, which is a pedestrian, open air shopping street, like 3rd Street Promenade in Santa Monica, for those of you in L.A. It was warm and humid, but not too bad (and quite nice for December). Then, out of the blue, Soren had a seizure. So that bummed us out and put a damper on the day.

Bucking ourselves up, we had a nice lunch and walked down to the beach. It was really beautiful. We all planned to go to the rooftop pool for a dip, but the elevator that went to the pool was broken, so Soren and I didn't get to go. Turned out just as well--the pool was unheated, the wind had kicked up, and Mo and Aaron were freezing.

That night we went back to Lincoln street for dinner with Ben. We got there early and walked around to see what our options were, simply trying to check out the menus. The bizarre thing was that a host or hostess stands in front of the menu trying to persuade (convince, harass, overwhelm) you into eating at their restaurant. They offer you free dessert, free wine, discount prices. They hand you their card and make you promise to come back. Eventually, we ended up eating an none of these places because we figured they had to suck if these people were pushing them so hard. We had a lovely meal at a place of our own choice!

When we returned to the hotel, we turned on the TV and were surprised to learn that tropical storm Olga was wreaking havoc in Santiago in the DR. We, of course, didn't know the geography of the DR, so we were unsure of what the next day would have in store for us, travel-wise. And while it's not too much of a cliff-hanger, since we obviously (thankfully) got home safe, I will tell the next portion of our trip tomorrow.


Monday, December 10, 2007

5th Trip to the DR

We head off to the DR for Soren's 5th stem cell treatment tomorrow.

We're excited to see the friends we've made in these journeys.

We're excited that, thanks to all of you, this is an option for our son.

We're excited to see, after 4 promising treatments, what this brings for Soren.

We welcome all good thoughts in our travel and in Soren's treatment.

I'll update you when we return!


Thursday, December 06, 2007

My Classmate Diana

Hey Everyone!

My classmate from high school, Dr. Diana Zschaschel, DDS, has started a new non-profit organization for children with special needs. She is using her skills as a dentist to help these kids and ABC News recently did a story on her.

Children with special needs are often turned away by dentists because they don't know how to deal with the child's disability. Or if that child only has insurance provided by the state (Medi-Cal), the dentist turns them away because the payment is significantly lower than their usual pay. This leads parents to neglecting their child's teeth, which of course can lead to other more costly problems.

But Diana is helping kids like Soren (and she's actually looked at Soren's teeth one time!) by starting this organization. She not only sees this kids, she welcomes them. She treats them with the care and understanding they deserve--that everyone deserves.

So check out
  • Diana's ABC News Report

  • And for all these kids, I thank you, Diana!


    Monday, December 03, 2007

    Slacking Off

    I apologize for not keeping up with the blog. Between Thanksgiving, my getting a part-time job, preparing for Christmas, and going to the DR next Tuesday, I've been a little swamped.

    But here's an update. Thanksgiving was lovely. We went to my sister's and Soren had a great time being in the middle of the hubbub. He really seems to like being in the middle of a social group more and more, which is nice. We had a seizure-free Thanksgiving Day for the first time in 3 years! But then to balance that, he had 1 on Friday and 2 on Saturday. But he recovered from them well and kept on truckin'.

    We split the drive up in half on the way home, driving to Desert Hot Springs on Saturday and staying at a hotel with lots of warm to hot pools. Soren had a blast laying in Aaron's arms in warm water with a big smile on his face cooing happily.

    Last week wasn't so great seizure-wise. He had a few early in the week then Thursday he had 2 at school and 3 at home. At that point we gave him Diastat so he could have a good, seizure-free sleep.

    Friday we went to see the "VNS gatekeeper"--the neurologist who looks over the info to officially decide is Soren is a good candidate for the VNS. He, in fact, is. But this doctor suggested we try getting into the Clobazam study first, which was our plan!

    And we are looking forward to some nice, balmy weather next week in Miami and the DR as we go for Soren's 5th stem cell treatment! We are very excited, though I'm freaking out that I'm missing a week of childless Christmas shopping. Gotta go hit the malls!