Check this out!

There are various degrees of "walking," but this is pretty good for us! She's not yet walking around the house on her own, but that's probably not too far away. Not even the IV tubing can slow her down!

We are very pleased to post this, and it happens to come exactly 1 year (to the day) after Maggie began to crawl. You can see our blog archives for the proof!

Some changes

We have had a couple of eventful things happen this week. First off, Maggie went to PT yesterday and showed Nancy, her physical therapist, all the progress she has made in the last 2 weeks. Maggie took 6 independent steps by herself! She has been cruising around home with her grocery cart and stroller, but she has also been walking from me to another object all by herself. We are making progress!

Another event that we are not quite successful at yet is the transition to Maggie's big girl bed. Just this past week Maggie has begun to wake up when Andy and I go to bed (we have all been sharing a bed since Maggie's diagnosis). She would then stay up for several hours, just moving around in bed, happy as can be. One night she woke at 12:30 and didn't get back to bed until almost 4:00.

Originally I was going to wait to transition her into her own bed once she was off of TPN because I have to do at least 1-2 diaper changes a night due to the fluids going through her. But after getting such little sleep, we decided to make the switch. Currently, Maggie's naps in her bed and then after about an hour of sleeping, she awakes and becomes upset about her surroundings. When I get her, she than sleeps another hour while I rock her. Baby steps... At night, Maggie is able to sleep in her bed until she awakes and finds we are not there-- which for the first 2 days was about 3 hours in her bed. Last night was an exception that I hope continues, she slept in her bed from 9:45pm to 4:00am. Unfortunately she awoke at 4:00 and decided by 5:00am that she was finished sleeping. Not in this house- we awake when the sun comes up.

So, it's definitely been a rough week of sleeping for us, but I'm hoping that it will get better and that eventually Maggie will become comfortable sleeping by herself without the comfort of Andy and me next to her. I have to say, it's definitely been nice to have my pillow all to myself. She's quite the pillow and bed hog.

A couple more updates... Maggie was able to get a urine sample the big girl way, by going in the potty versus a catheter. The sample showed that she no longer has a UTI. Thank you for your prayers. Also, another little update... I think Maggie's feet is growing as we put her in a new pair of shoes. This is a great change as her feet really haven't grown since she started treatment. She loves her shoes, though they are a bit more bulky and will take some getting use to.

I've posted more pictures...I know, I know MORE pictures? When we get a chance to tape Maggie's walking, we will put it on here. We look forward to the day when we are chasing Maggie. It's within sight, I think. Just like some other big events, like off treatment...

Maggie wanted to practice her walking at Andy's cousin's wedding. She is so proud of herself when she walks, and we are too!

We celebrated Grandpa and Grandma Lehman's 40th wedding anniversary with all the family. Grandma is reading a book to all the cousins.

All smiles!

Maggie has discovered her backpack and likes to have it on throughout the day while pushing her stroller or cart. Though there isn't a picture, she has also been sporting the one glove look for some odd reason. She will either wear one mitten or one purple glove that the hospital staff wears when giving treatments.

Maggie uses her stroller to get around the house. I was in her bedroom the other day, and I heard her pushing along the hallway coming towards me. It's so nice for her to be more mobile, and I think once she is walking on her own she will become even more independent. Nancy thinks that given the progress the last few weeks, Maggie will be able to walk around the house in the next month on her own. We can't wait!

Maybe, just maybe, Maggie will be able to splash around in the fountains at the Greene this summer. Andy and I have been dreaming about that since before Maggie was born.

Bath Time Fun!

This photo is not meant to cause embarrassment, but rather, to show the anticipation of bath time. Because Maggie only receives one bath a week, due to her port being continually accessed, we have to make it as enjoyable as possible. These pictures (and sorry, I do have a lot of them) show the complete joy Maggie has during her bath.

Bath Time Part 2

Maggie's favorite toy right now? Cups! She loves to fill the cup up from the faucet and pour into other cups. She enjoys cups so much that she stands at the tub during the week and leans over to fill the cups up with water to pour. It occupies her for quite awhile, which we enjoy watching--independent play!

Can you believe the fun that Maggie is having? If only you could witness this joy! It is amazing and so much fun to watch, considering that several months ago it was quite difficult to get a smile out of her.

Mohawks and cups = hours of fun in the bath for Mommy and Maggie.

Do you know how much fun it is to be able to play with Maggie's hair? We truly do enjoy the simple things in life.

Dr. Maggie

Maggie receives weekly needle changes. I have been trained by the nurse to do them, so Sunday nights have become the day of re-accessing. Maggie got into some of the dressing materials (the hat and mask) and enjoys playing with them prior to the actual poke (that part she doesn't enjoy at all). Some day this little girl just might work in the medical field. She's definitely spent more time there than almost all of us!

We have enjoyed our Monday night meals from Westminster Presbyterian Church. We are very grateful for all that they have done. Here Maggie is enjoying one of the cupcakes from a meal and admiring the frosting mustache with the mirror.

All Good

Things continue to go well here in the Bixler house. We made it back to Dayton last night at a record time due to no vomit or poo stops. It seems that whenever we get in the car, Maggie decides she has to make a mess of some sort, either by choking on food and then eventually vomiting, or by having diarrhea. Thankfully though, she was very content watching her Backyardigans on the dvd player (along with some other helpful movies). It's nice to be home, but I do really enjoy my time at my parents because of the help in entertaining Maggie.

Monday's are always "hold-my-breath" days. It is lab draw day. Though I don't necessarily have any reason to worry, I still get quite anxious awaiting Maggie's blood counts. If her lab results are good, I always feel like I can breathe and enjoy myself for the rest of the week. Then it starts all over the next week.

Today proved that I can enjoy myself again for the week. Maggie's labs all looked good, except for her stubborn prealbumin (this measures her protein/nutritional status). Her number has to be in the 20's before they will consider taking Maggie off of TPN. Her number today was 17.5. It just won't budge, though sometimes it does get lower. We are beginning to think that this number just might indeed be measuring inflammation in her body, as everything else looks good. Maggie was weighed today and is up to 26 lbs. 13 oz. Wow! She even grew a bit, if her height that was taken was accurate. She is up to 32 inches. I am hoping this is the case because it means that her body is finally nourished enough to begin catching up (and the lower doses of chemo are allowing her to do a bit of growing as well).

Along with Maggie's prealbumin needing to be in the 20's, her diarrhea also needs to be making improvements. And while it is improving, it unfortunately has not gone away. For the most part, Maggie wakes up in the morning and immediately sits on her potty and goes poo. She is content to sit there a good 30 minutes or more while watching her dvd player. This new routine that we are in allows for less messes during the day. There are days, most often after she takes her oral chemo, Methotrexate, that she will go 3 or 4 times, but those days are more rare. Though it is still diarrhea (and I don't expect to see it get better until she is off treatment), it is a lot easier to deal with 1-3 episodes versus our 15-20 that we were cleaning up 3 months ago.

So, the amount of time Maggie will be on TPN is still up in the air. We go in next Monday for a spinal tap, chemo, and the start of steroids. They also intend on increasing her chemo, Vincristine, and seeing how her body responds. Three months ago she had some toxicity to the Vincristine, which caused her to lose her fine motor skills, lay limp, and fall over when crawling. It was a very tough experience that I don't want to re-live ever again.

Please continue to pray for Maggie, that her cancer is completely gone and she is completely healed. Also, pray for all the children and their families who are going through these same battles.

Home away from home

Life continues to be as "normal" as it can be for us. Maggie continues to do well-- smiling, laughing, playing, practicing her walking and standing. We are enjoying our time.

Maggie and I are actually not in Dayton right now. This past weekend we went home to attend a family wedding, and then Maggie and I are staying for the week at my parents. We worked it out with the doctors and pharmacy to allow us to take a visit. I am so grateful to Dayton Children's for working with our schedule. For the last 18 months, we have felt a bit like prisoners in our home, but now we can at least venture out a bit.

Maggie really enjoys being at Grandma and Grandpa's (aka Mom and Pop), as well as being with Aunt Morgan. She gets plenty of attention. We also were able to go out with Andy's family (minus Andy) last night for supper. Maggie got to tour a bit of Holmes County, but unfortunately didn't enjoy the hills or curves. She ended up getting sick in the back of Grandma Bixler's car just before we got to the restaurant. Thankfully she recovered well and we made it back home without any problems.

I have enjoyed this time of being home because it allows me to relax a bit. It's nice to have company during the day and it's even nicer to have Maggie socializing with others. She needs that time since she doesn't have the opportunity to see others, especially kids very often.

Thank you for your continued prayers for Maggie. They are working! Please keep praying that Maggie has been completely healed of cancer, that her diarrhea will go away for good, that her UTI will be cleared, and that her 2 month old cold will be healed.

Christmas photos

I have posted what seems like a bizillon Christmas pictures. It's hard when going through them to pick the best ones, so for that reason, there are a lot. Feel free to scroll down quickly as they might seem repetitive.

Part of the reason for our slow posts is that I have been meaning to add pictures from Christmas, but I have been procrastinating. I have one more group of pictures to add since Christmas, but they will come another day. Hopefully there won't be any procrastination with that.

Before Maggie was diagnosed, I kept a blog of pictures and anecdotes of her life. When we started this blog, I stopped the other blog with every intention of eventually picking it back up. I still plan to do that, but for now, I am doing my "scrapbooking" on this blog. So, hopefully things will continue to run smoothly in this household and we'll be able to take more pictures to post on the blog.

I should just mention that we went to the clinic again yesterday because Maggie had been crying of terrible pain while pointing to her bottom. As I again assumed, she has a UTI, so we are treating her with antibiotics. Though the process of getting the urine wasn't pleasant, Maggie seems to have recovered well. Hopefully this time around she will get rid of this infection for good.

Enjoy the pictures!

Christmas

Maggie and Leah opening identical presents.

Wow! This was the present of the day that each child wanted to touch.

A funny little story about these shoes. Maggie got black shoes to go with her black dress that Grandma/pa Bixler bought her. We needed the shoes before Christmas so Maggie had worn them several times (including that morning). When she opened the present with her shoes, she was so happy and wanted to try them on immediately. I guess with young kids they can be surprised by the same gift over and over again.

This picture summarizes our Christmas fun. Whew, by the end of the 4 days, someone was tuckered out. Though Christmas went by quickly, a good time was had by all!

More Christmas

Christmas with the Lehman family

Since Maggie has been on TPN, she has made leaps and bounds in her motivation to walk. Here she is preparing to stand up while using her Christmas present.

She's up! What a big girl she is! At Christmas, Maggie didn't know how to get back down, but she is now lowering by herself. This is a great step in her strength and confidence.

More and more presents equals more and more smiles!

Arter Christmas

We spent time with my Mom's family celebrating Christmas.

Great Aunt Kristi and Uncle Jr. live on a farm and each time we go to their house, she spots out the animals. We managed to see some cows, cats, and a dog. She even had enough courage to pet the dog.

Brendan got a piano for Christmas and it was quite a hit for the kids.

Making Pizza

I think the highlight of Maggie's day was making pizza with her cousin's Stella and Mira. They spent quite a bit of time putting the toppings on the pizza and serving it.

I think this picture sums up how happy Maggie was. You don't get a smile from her often, and you rarely hear her say "cheese."

Christmas Day

Christmas day with the Bixler family!

Last Christmas Maggie was not at all interested in opening the presents, but this year, she really enjoyed it.

Grandma Bixler tried to get a picture of all the grandchildren. Unfortunately, the grandchildren didn't all cooperate. Maybe next year...

Our family Christmas

Maggie got starbursts in her stocking so in her pictures she looks like she has a mass of something in her mouth. The funny thing is, not many of the presents were a surprise because she shopped with me and even managed to play with some before the big day, but she was a good sport and acted surprised regardless.

We opened up Christmas presents Christmas Eve because we were going to visit family for the rest of the weekend. I think Maggie's favorite present was a Backyardigan's dvd. We have watched it daily on repeat ever since. Nothing like promoting bad habits to a 2 year old.

My Helper

We have graduated from the floor to the counter when helping me cook.

And the wonderful thing about the dishwasher is that Maggie pulls herself up!

Maggie has become like many other two year olds, which I am so happy to see. Anytime Maggie exhibits "normal" curiosities, I smile and then try to get a photo. So, here are a few pictures of Maggie "helping" me in the kitchen.

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!