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!