Quick update.

Our posts are coming a little bit more infrequently, we know. We're not exactly sure why that is. One thing is that we have been pretty busy this past week with treatment; chemo in the clinic, and steroids throughout the week.

Maggie's last dose of the steroid for this round was Friday evening, and through Saturday, it was still affecting her a lot. Her sleep was definitely disrupted, which is always hard.

She is starting to feel better today, and her sleep is improved. Maggie actually laughed quite a bit today. She took her weekly bath before we re-accessed her port and we took quite a few cute pictures of her. We'll plan to add them to the blog soon.

Other than that, we are trying to move on and live on.

Off we go.

We are here

We are still here, it's just like the old saying... no news is good news. We have been enjoying the holiday season-- visiting family, celebrating Christmas with family, bringing in the New Year with family and friends, and going to church! I think we have made a record 4 times in a row. Something I don't think we have mastered since Maggie's diagnosis and even birth. It has been nice to have some normalcy in our lives.

Tomorrow, though, starts another week of steroids. It is never fun, but something we are counting down-- 6 more weeks of steroids spread out over 6 months. I am hoping that it doesn't reverse the progress that Maggie continues to make with her physical development. This week she has started to walk with just holding our one hand. While I don't know what this means in the progression of development, we are quite excited. She has stood momentarily by herself, but if she really had to, I think she could stand for quite some time. Her balance and strength continue to improve. Her physical therapist, Nancy, who Maggie now refers to as Santa (she gave Maggie a Santa sticker), said that if Maggie continues at this pace, she might be walking in about 3 months. I think we can beat 3 months and that will be our goal!

Though we didn't formally wish you a Merry Christmas, we do hope that each of you had a Merry Christmas and a Happy New Year. We took our yearly Christmas picture yesterday before we took down our tree and decorations. As we took the tree down, I wondered what next year at Christmas will look like. Where will we be, what will our lives look like, will we still be a family of three, will Maggie still be with us? I promised her that next year she will help me decorate the tree. I hope that I can keep that promise.

We were talking to someone the other day about hoping the new year will be better than the last. 2009 wasn't a horrible year for us, much better than 2008. However, we hope that 2010 shows us an even better year. More specifically, we look forward to June 30, when we are finished with treatment!

Ideal Weight

Well it appears we have hit the ideal weight for Maggie-- 25 lbs. 7 oz. I got a call today saying that they are decreasing the amount of TPN that Maggie is on because they don't want her necessarily gaining anymore weight, and they would like her to begin eating a bit more on her own.

While Maggie has been allowed to eat while on TPN, her appetite has decreased quite a bit. Before TPN, Maggie ate constantly because she wasn't absorbing anything. As she has continued TPN, I have noticed her gradual shift to eating much less. While I definitely don't know what "normal" is due to our always having eating issues (whether she didn't eat at all during the heavy treatment to eating constantly while having profuse diarrhea), I am guessing that she might be not taking enough in now. Who knows though.

The other issue with her nutrition is that her pre-albumin (measures her nutritional state) is still pretty low. It fluctuates from week to week, but the last count was below normal. Dr. Mezoff believes that Maggie's protein in her body was so depleted that she has little reserve, therefore she must build it all back up, which I guess will take some time. For this, they have also changed the amount of protein that is in her TPN by increasing it.

We will see how it all goes, but we continue to be encouraged by Maggie's disposition and weight gain. The TPN is our miracle drug right now to getting her back on track. Hopefully soon enough her diarrhea will be completely gone and her nutrition will be at a perfect state.

Latest Pictures

After perusing through our blog, we noticed that we haven't posted any pictures of Maggie in some time, so be prepared for the last month in review. I have posted about 6 entries, so make sure you take a look.

Maggie has really changed in her looks since October. Her face has shown the extra pounds that the TPN has added. Today we went to the clinic and Maggie is at her all-time high, 25 lbs. 7 ounces. Hurray! Her counts also looked very good and Dr. French was very pleased with what he saw and has heard (appears that others are talking about Maggie in the clinic).

When Dr. French walked in the room, the first words out of his mouth were "Who is this?" We haven't seen him in over a month and within that time Maggie has added almost 2 pounds to her weight and her hair continues to grow!

During the visit, Dr. French determined and without any hesitation stated that Maggie's spots on her head are eczema. With that final analysis, we are going to stop worrying and talking about "the spots." Maggie's cold continues to persists (as both of ours do at times as well) with a runny/snotty nose and a cough. She was unfortunate enough to get another H1N1 shot, but received a present afterwards which was nice, but not as nice as the second sucker offered to her. She is quite the sucker lover these days.

Maggie's leg continues to heal. She is again using it, though every now and again a bit gingerly. It appears it was probably a bruise to the bone, though she does still talk about her "boo-boo." Maggie's new favorite thing is to "write." We have found that we can take her to church and have her write (color) and it keeps her pretty quiet. Though yesterday during church she grew frustrated because she was writing with a white crayon and couldn't see it. She asked for "help," but wouldn't accept a new crayon, so instead she started screaming. Ah, not what you want to happen at church, and even better to have the minister make mention of her crying in his sermon. We have been very blessed to have been able to go to church the last 2 weeks and hope we might be able to continue to as Maggie is doing so well.

We are plugging along and having good labs keeps our hopes up. As I tell people, it gives me one more week where I can breathe and relax. Though I won't lie and tell you each Monday I hold my breath praying that Maggie's counts will come back good. There have been many children that have been hit with illness, relapse, bad news, and even death in the last couple of weeks that it continues to shake us up and reminds us of the reality of this horrible disease. Please continue to pray for those children who are battling this disease and those families who have lost their children.

But, we will walk this week knowing that Maggie is still on track and we will celebrate Christmas with the hope that they talked about in the Bible. Hope for a Messiah and hope that Maggie is completely healed of this disease.

Maggie has renewed her interest in the potty. She tells us she has to go many times throughout the day, only to have false-alarms. One evening, Andy got tired of taking her up and down the stairs that he brought it to her instead.

Maggie's reaction to opening her Christmas present from Heather (and family) is priceless. Christmas presents are going to be so much fun to open this year. As we were shopping at the toy store, Maggie would point to toys and say "mine," while pointing to her chest.

This is Maggie's walker that she walks with. She is using it to hold her up as she opens her gift.

She was very excited to open up her doll, though this picture definitely doesn't show it.

Our week after Thanksgiving

The slinky was one of the big hits of the week. Maggie loved throwing it down the stairs and even shared with Leah when she (and Brendan) came to visit.

As I shared earlier, we spent the week after Thanksgiving at my parents. We had such a nice time. During this visit Maggie started climbing up the stairs once again, she played independently and with her cousins who visited us one day. Maggie enjoyed having more people around to talk to. Aunt Mo-Mo (Morgan), Mom (Grandma), and Pops (Grandpa) played with her and I think even helped her to be less shy around others (baby steps though). Maggie also started calling me Whitney (or Wee-ney) as that is what everyone called me. She called Grandma, "Mom," because that is what we called my mom and even my dad got a couple of "Dad"'s out of her. As of the last couple of days, Maggie is has begun calling Andy "Ann-ee." This morning she woke up to the phone ringing and yelled for "Ann-ee" (she must have observed this from someone else).

In general, it was just nice to have company during the day and to get a break away from our home in Dayton. The transition from my not working to Andy working full time has been difficult at times. Last year, though I worked, I had a flexible enough job that I could work from home so we did a lot of the caring for Maggie together. With Andy gone from 7 am to sometimes 7 pm, it is a long day for all of us. Maggie demands a lot, especially during steroid week. So I was very happy to be able to have some time at home with my family, though both Maggie and I missed Andy. Thank goodness for skype as we were able to talk and see Andy daily.

The Horse

Maggie loves horses! We spent some time outside of Andy's uncle and aunts house so that Maggie could look at the ponies (not quite brave enough to pet).

Grandma Bixler joined us outside too.

The horse was quite funny as he would raise his head and show his teeth. We all laughed and Maggie imitated.

Bixler Thanksgiving

Here are some pictures of our time with the Bixler side (as well as the Miller Thanksgiving).

Maggie found that she loves to "write." She now colors with crayons in her coloring book and asks to write all the time.

Maggie with her cousin's Stella and Mira. She loved writing with them and sharing the markers.

With her cousin, Ian riding in a boat.