March 31, 2009

Palm Springs Weekend

We spent last weekend in Palm Springs with Ryan's parents, sister, and her boyfriend, Ed. We stayed in a fabulous house with a pool, jacuzzi, and a pool table. I was surprised that there was a lot more to do in Palm Springs than I initially thought.

There was a great Children's Museum that Madeleine just loved.

Here she is being a scientist.

And painting a VW Bug.

Hiking in Joshua Tree National Park.

Sitting in the "Hookah Corner" with Pop Pop.

This is how we roll, don't forget the sippy cup.

With Aunt Becca and Ed.

The most impressive part of the trip was the tram that we took straight up a mountain. It went from 2,000 to over 8,000 feet in about fifteen minutes. The tram itself had a rotating floor, which allowed you to see the views no matter where you were standing. Once at the top we hiked around in the snow for a little bit.

Tomorrow is a day that I have been looking forward to for over a year. Madeleine gets her line removed! We check in to the hospital at 6am, and the surgery is at 7:30. This is a minor surgery, and we'll probably be home before noon if all goes well. I can't wait to see her without that line. I'm also curious to see how she reacts to having it removed. She knows it's there (obviously), and she's conscious of being careful about not pulling on it.

I'll try to post a line-free picture tomorrow.

March 25, 2009

counting up

If I add up all the time that I have spent waiting in clinic for various labs, appointments, chemo, etc, I'm sure that I could've used that time to train for and run an entire marathon. Or maybe learn a new language.

Yesterday Mad had her regular clinic appointment for labs and urine check. The labs came back fine but the urine showed a lot of bacteria and they are concerned about a possible bladder infection. We had used cotton balls in the diaper to get the sample, so they wanted me to come in today so that they could "bag her," which is pretty much just like it sounds. Bagging her works about 50% of the time, and causes much waiting around and obsessive diaper checking as I try to convince her to drink more liquids. Today it did not work, the bag became unstuck, and after a few of hours of waiting we were back to square one. They sent me home with another bag, but I don't have much confidence in my bagging abilities. If it doesn't work I'm going to try the cotton balls again and hope that they won't become contaminated this time.

Meanwhile, I'll leave you with pictures from this past weekend.

New favorite hat

I was frosting a cake, and I gave her some of the leftover frosting to get messy with. She didn't want to eat it, she wanted to fingerpaint on the window with it.

In Coarsegold, walking with Grandpa.

Mad spent a long time putting kindling into the box.

Snow-suited out.

March 24, 2009

To be removed

Madeleine's line is scheduled to be removed on Wednesday April 1st. I just realized that's April Fools Day. Hopefully insurance won't be playing any tricks on me and it will be removed as planned. That means that there is only ONE more dressing and cap change, and seven more heparin flushes until the line is no more. I am so excited.

March 16, 2009

Pre-Op Line Removal

We had our pre-op appointment this afternoon to have Mad's line removed. Nothing exciting, they are going to remove the line, as we expected. We now have to wait for insurance to authorize the 20 minute out-patient procedure, and then be put on the surgeon's schedule. They said it could take 2-3 weeks just for the authorization!! Hopefully it won't be that long because I'm so eager to get that line out.

Because Ryan is out of town at a conference in Philadelphia this week (he gave a talk this morning and it went really well), Mad, Humphrey and I are headed up to Coarsegold tomorrow to visit grandma and grandpa. I also hear that there will be some snowmobiling (for me, not Mad) with Uncle Kyle and Aunt Karen! I'm excited, but a little nervous. The one and only time that I rode my brother's dirtbike I propelled us both over the handlebars. Sure, that was probably fifteeen years ago (holy crap I'm old!) - but I haven't learned anything about driving recreational vehicles in the interim.

Thanks for thinking of my friends and their baby. The baby's surgery went very well and they are currently recovering in the hospital. They didn't even have to go to the ICU, which is GREAT news. I'm sure they are relieved to have the surgery behind them.

March 12, 2009

A Hodge Podge of Things

I haven't posted in awhile and I don't have much to report. Mad and I have been busy with various play dates and other outings. Yesterday I took her to a free class at The Little Gym (thanks Ericka, for the idea!). Madeleine absolutely loved it. This class included more tumbling than the Gymboree class, in fact Mad learned how to do a somersault (with help), and now she just won't stop doing them. She puts her head on the floor, looks out through her legs and waits for someone to grab her hips to help her over. When she woke up this morning (in our bed...of course), that's the first thing that she did. I liked the format of the Little Gym class better than Gymboree as well. There was still singing and some group time, but there was also a good amount of independent time to explore the gym. There were only five or six other toddlers in the class, and this seemed like a benefit as well. She was way less overwhelmed at this class. Unfortunately the cost is about the same as Gymboree. After talking it over, I think that we are going to commit to it until the end of the semester (June), that way we can really see if it's worth it before signing her up for a whole 20 weeks of classes.

I'm looking forward to her appointment with the surgeon on Monday so that we can then schedule a date to have her line removed. Can't wait!

Please take a minute and send some good thoughts/prayers/whatever to my friend whose baby is undergoing a serious and scary surgery today. I don't want to share too many details because I didn't ask her if it was okay. Her in-patient recovery is expected to take at least a week. Having been through something similar, I know that handing your baby to the operating room nurse is one of the most difficult and helpless feelings I've ever encountered. Thanks for your thoughts.

At Seaworld with Kassidy and Audrey. During the Shamu show, Madeleine kept mooing at Shamu. I'm pretty sure she thought he was a cow (he's black and white and his name sounds like "moo" I can totally see the mix-up ;) )

This is what happened when I brought the big box of medical supplies down in order to see what I needed to reorder. All of those things on the floor are gauze packets. I use one or two of these a week and they give me boxes at a time. Mad took it upon herself to empty the box and climb in.

Love the hooded towels!

It got below 65 degrees. She figured she needed to suit up for our walk.

Speaking of walking, I acquired a new (to me) jogging stroller that I'm really loving. It is so much easier to push it over the uneven sidewalk and curbs. I've even taken it out on a short run and was surprised at how easy it is to run with it.

March 1, 2009

One year ago

Today marks the one-year anniversary of Madeleine's diagnosis. I've been thinking a lot about what I would write today. I've decided that I've said everything that there is to be said, and I don't feel the need to put more of it into words. I'll leave you instead with a photo slideshow of the past year. I hope you like it.

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