Appointments

Maggie had several appointments this week. Each appointment went pretty well. On Tuesday, she saw her GI doctor, Dr. Mezoff. Her weight, according to that scale, was 12.9 kg (roughly 28.4 lbs.). Though her weight was a little down, he was very happy with how she looked. He thought that while Maggie was on her NG tube feeds, they were beefing her up more than what her body really needed. Now he thinks her body is settling into her actual weight, between 28-29 lbs. According to her weight vs. height, she is in the 50th percentile. The plan from GI's standpoint is to do another upper GI when Maggie's ready to get her port removed. They want to only put her through one anesthesia by doing all of procedures at once (included in this is also a CT scan of her lungs). This will take place when Maggie's immune system is back to normal. That will be our last visit with GI as Dr. Mezoff thinks that Maggie is good enough to be on her own now. We are happy to be able to take one specialist off our list.

Maggie also had her physical therapy yesterday with Nancy at our house. Since our vacation to the beach, Maggie walks around the house all the time. Rarely do we see her crawling anymore, which is so wonderful! She is able to stand up without pulling herself up with another object, which was one of our goals. Another goal was for her to be able to stand for a given amount of time and take 20 steps consistently, both which were achieved. We are getting close to being done with physical therapy because much of what needs to be done now is strength building. One thing we are going to do is get Maggie some inserts for her feet, as her ankles/legs turn in. It will give her heels some support to help the rest of her legs.

Finally, though we are off the medicine that caused highly sensitive skin, Maggie still continues to have some rashing. She also was bit by a mosquito on her hand and had the same response as her previous bite, a blister. We wonder if she is allergic to mosquitoes, her immune system is causing crazy side effects, or her anti-fungal medicine is causing similar responses.

Maggie also has been losing hair for about a week now. I was very nervous and upset about this because with any new change, I ultimately think the "R" word. After some research from Andy and then getting confirmation from Dr. Mezoff, we believe Maggie is losing her hair due to her traumatic illness 6 months ago. The literature says that she won't lose it all, but after going through chemotherapy, I worry that she will end up bald again. Though it is superficial, I just don't want her to lose her pretty auburn hair again.

We have our monthly clinic appointment on Monday. Of course, with this comes a bucket of nerves again. We don't expect to see bad counts, but in the back of our head, we can't help but worry just a little bit. Please pray with us that Maggie continues to show that she is healed.

Light the Night

Last year we had the opportunity to participate in Light the Night, a leukemia and lymphoma society fundraiser. We are again participating this year and this year, Maggie will be walking (at least some of the walk) rather than being carried. If any of you would like to participate with us and be a part of Maggie's Team, please join us on September 30! If you are unable, but would like to contribute a donation to our team, we would appreciate that as well. Our goal is to raise $100 per person. The website to visit our Light the Night page to donate or sign up to walk is http://pages.lightthenight.org/soh/Dayton10/Maggie. Please check it out.

We will share pictures from the event, especially our little girl walking! Also, we have pictures to share from a beach vacation that we took with my side of the family last week. Those will be coming soon.

Maggie's photography

Here is just a sample of one of Maggie's photography escapades. Her new-found love is the camera, and it can keep her occupied for hours. We found this a great way to make the car ride go a little faster.

We need to work on aiming the camera up. Almost all of Maggie's pictures are of the floor.

I was able to take a picture of her as well. What a sweetie!

She was experimenting with the camera by turning it around and getting a glimpse of herself.

The Bean

Chicago has a sculpture in Millennium Park that is sometimes called "The Bean." Maggie and Andy really liked The Bean and so before we went home, Andy had to get pictures of their sculpture.

Maggie posing by "The Bean."

Look at her walking all by herself! Yeah!

Water Fountains

Millennium Park has a very neat water fountain that Maggie enjoyed playing in. When we found out that we missed the dancers, we decided to play in the water instead. We all walked hand-in-hand for awhile and then Maggie found that she could splash in the water. She enjoyed crawling in it and getting all wet.

As we reflect on last year's trip, Maggie would have never have considered this type of play. We are so happy to have a "normal" child who wants to get wet. It's even more exciting to see her walking with support (though she can walk all by herself again). We love moving forward and watching her develop into a beautiful young girl.

Andy was a great sport and got down on his hands and knees too.

Though this picture is very dark, I love the look of joy on her face as she is splashing water.

All done and very wet!

Chicago's Lincoln Park Zoo & Shedd Aquarium

We visited the Lincoln Park Zoo, as we did last year. It's a nice zoo that is free, which is ever better! We didn't spend a long time there as it was very hot, but we enjoyed it. Maggie's highlights were probably the sea lions (we enjoyed the air conditioning as well) and the monkeys.

The zoo had a great exhibit of monkeys that Maggie enjoyed.

Though I only post pictures of family here, this picture is actually for Uncle Steve. Columbus zoo doesn't have zebras, but we found them in Chicago!

One of the challenges of the weekend was naps. The freedom of a king size bed and the schedule were our opponents. After refusing to nap, Maggie was left looking like this for our supper one evening. But on the upside for her, she got to go swimming in the hotel pool rather than take a nap.

At Shedd aquarium, we got to watch a 4-D film on penguins. Maggie enjoyed wearing the glasses before the show, but was done once it started. Maggie's favorite thing about the aquarium was the "whales jumping."

Chicago's Millennium Park

One of Maggie's favorite things was watching the dancers in Millennium Park. The last night we were there, the dancers were dancing, but unfortunately, we got there too late. It was a disappointment as that is all Maggie was talking about, but she recovered quickly.

Andy loves the city of Chicago and it's landscape. There are many pictures of the beauty of Chicago's skyscrapers as we were staying in the heart of Chicago. Unfortunately, I don't share nearly in the excitement that Andy has and so I am not posting them on the blog. My photography eye catches the beauty in my family, so this is what you will see most often.

Once again, eating an ice cream cone.

Dancing with the dancers.

A new interest of Maggie's is photography. Much of our camera is loaded with her photos (thank goodness for digital cameras). Here she is grabbing for the camera because she wants to take pictures of the dancers.

Silly faces with Daddy.

Last year, I carried Maggie almost the entire trip. This year, Maggie wanted to push her stroller and walk. It was a nice change, though a bit slow at times. She built up a lot of strength walking the streets of Chicago.