And we're off... again

So, after several weeks, we are back to where we were...walking! Andy and I talked last night and feel like we have experienced Maggie's "first steps" about 4 times now... and each time is just as sweet as the time before. We hope these first steps are her last and from now on she only takes off walking... and eventually even running. When Maggie wants to go somewhere she says "run fast!" and then crawls really fast. I can't wait until she actually runs really fast

We had our monthly appointment with Dr. French today and things continue to go well. When Dr. French saw Maggie, his first comment was "she's got a lot of hair." He was pleased with the way she looks, her blood counts, and even her immune system test (though they are a little below normal yet). The possible plan is to take the port out in September, as her last anti-pneumonia drug will be given most likely next month. Again, we left the clinic with a sense of relief that she is still on the right track. We pray this continues for the rest of her life.

No More Tubie!

After 8 1/2 months, Maggie is now tubie-free! Maggie began TPN the first of November and has had something hanging from her body (and often trailing her) since then. We went to the GI doctor yesterday and he said, "How do you feel about getting rid of this thing (the NG tube)?" Of course, I was squealing inside, but also had a few nerves because now it means Maggie is responsible for everything going into her body. This is something she has had very limited experience with.

Maggie's weight has remained fairly consistent, with it being a little on the low end right now, but yet within reason (13.2 kg). Dr. Mezoff (her GI doctor) feels that she is at the perfect place to try to sustain her own being that she has some weight she could lose and still be okay, though of course we do not want that. I asked about beginning an appetite stimulant, but he doesn't like to add medicines if he doesn't have to. He wants to see how Maggie will do on her own and he believes she will be successful.

The other tubie that we have gotten rid of is Maggie's pulse ox (her oxygen saturation reader). She had a pulse oximetry test last Tuesday night that recorded her oxygen saturations. The pulmonologist wanted to see what Maggie did at night to determine whether she needed further studies (a sleep study) or oxygen at night. Though Maggie continues to de-sat, it was determined that she brings herself back up into the appropriate range and does not need further oxygen, studies, or continued readings. So, we packed up the machine and stored it away hoping never to use it again. We would like to get rid of all of our oxygen equipment, but the doctor wants us to keep it until Maggie has her first respiratory illness. Having the equipment for such an occasion will make me feel more comfortable as I can read Maggie's oxygen levels. Hopefully though, we will not need to worry about it becoming severe and needing further assistance.

So, it has been a wonderful 2 days in our house as Maggie no longer needs to worry about being wrapped up in her tubes as she rolls around in her sleep, and we are very happy to not have to mix up formula. Our new challenge is giving Maggie her medicines, but hopefully she will grow accustomed to taking them again. We welcome this new challenge as we know what it now means--being tubie free!

No more tubies for me!

Dr. Daddy

We had a big weekend in the Bixler household. It was a weekend that we have been waiting for for 6 years. But before we share about that, I want to share some things about Maggie.

Maggie is doing pretty well. Last Monday we went in to get Maggie's electrolytes checked and we got a weight. There was confusion in the lab, so she never did get her electrolytes drawn, but instead a CBC, which came back normal. That of course always takes some weight off of our shoulders when we receive good numbers.

Unfortunately, she was down in weight almost a pound. They have continued to lower Maggie's feedings which has caused some stress for me as Maggie is not accustomed to being on her own eating and drinking. Throughout her life, she has mostly had support either through breastfeeding, NG feedings (via the nose), or TPN. I have been counting every calorie and ounce that she eats and drinks, which has made me a bit stressed. We also had some diarrhea last week (something I said I'd never say on here again). After taking juice out of her diet, I think we have solved the problem. Unfortunately last week though it felt like a catch 22. The only liquid she was drinking was juice so that was keeping her hydrated, however it was causing frequent and loose stools.

Maggie is doing much better this week when it comes to eating and drinking. She is drinking whole milk to give her as many calories as possible and we have begun eating milkshakes as a snack at night, which hopefully is giving her some added weight and fluids. Her feeds are down to 8 hours at a rate of 15 mls. This ultimately means she is getting 4 ounces and 120 calories overnight. Not much considering that when she was at her peak feeds she was getting 32 ounces and around 960 calories during a 24 hour period. I was told by the nurse last week that if Maggie maintains her weight for a week (she now weighs about 28 lbs. 11 1/2 ounces), they will pull her tube out and she will finally be tubeless!

This would be a wonderful thing as at times the tube on Maggie's face reminds me of the rough road that we have had. Though it isn't important, I'm also tired of people staring at her. Since Maggie was diagnosed, she has been tubeless for about 3 months. How refreshing it would feel to not have to mix formula and to feel slightly more "normal." On the other hand, the tube has been a means for Maggie to get nutrition and when she is getting enough calories, we find she is happiest and most energetic. The tube also is the way Maggie gets her medicines. We don't struggle with her refusing to take her medicines, so it has been very convenient. However, we have talked to Maggie about taking her medicines by mouth and she told me this morning she wants to take them by mouth. Regardless of the benefits of the tube, we cannot wait for the day Maggie can have this tube taken out for good and be successful in getting her own calories and fluids.

We received Maggie's immune system tests back last week and found that she is still a little below normal. For this reason, we will stay on Maggie's anti-viral and anti-fungal medicines until they come back normal. How long before they are normal? I don't know, but Dr. French had said that it might take awhile given the chemotherapy and the insult Maggie had on her body with her sickness. We will continue to take precaution when it comes to taking Maggie out.

Maggie's leg, we believe is healing once again. We decided not to take her to the orthopedic doctor this time around since both times prior they sent her home without a cast. I didn't want to have to put her through the trauma of another x-ray. She's definitely not a fan. We can tell that she has lost strength in her right leg once again, but at least she is not complaining of her bo0-boo much anymore. She has not had physical therapy the last two weeks, but I think she will probably resume this week. We will see what Nancy says about her timeline for walking.

And finally, our big weekend! Andy received his doctorate from Wright State's School of Professional Psychology. Though it won't be official until September, he had his graduation--something we have all been looking forward to for a long time. When Maggie was diagnosed, Andy was finishing up his coursework for his 4th year. His 5th year he was to do an internship beginning in September 2008. When Maggie was diagnosed in June 2008, we decided that he would take the year off to care for Maggie while I worked. He sacrificed his career goal and 4 years of hard work to care for Maggie. Because of our family situation, Andy has had to make some sacrifices so that we could stay close to her oncologist, but all the sacrifices he has made have paid off and he was able to graduate this past weekend. We are all very proud of him. It was a wonderful day for him and for all of us. As Maggie was falling a sleep last night, I heard her say "Dr. Daddy." What a wonderful accomplishment for all the hard work Andy has put forth. And if I can speak for Andy, what he dreamed about for so long was to be able to graduate and see Maggie (and me) celebrate the day with him. We are so happy that Maggie was able to be present for this big day and to see Daddy in his "big hat."

So what's next for Andy? He finishes his internship in Cincinnati at the end of August. We will all be very happy when he is finished as the commute is atrocious. On a good day, it's an hour. However, Andy has had many 2 hour commutes on the way home, which is frustrating for all of us. Starting in September, Andy will be taking on a 10-month post-doc position at Wright State where he will be teaching a total of 2 doctoral level Psychology courses and counseling. The hope is after this next year, he will pass his tests to receive his license and be able to find a "real" job where we can move to a location closer to family. While we love Dayton, we have found that the support of family is very important and given that our family lives a distance away, we'd like to have family a little closer. We will see where God leads us though. But, that's a year away and a lot can happen before that time (as we've learned there is no way to plan ahead).

Thank you for sharing in our joy of the weekend. Please continue to pray for Maggie, that she will be able to nutritionally support herself and that she will be cancer-free forever.

After 3 months, Maggie finally gained enough courage to hold Parker. Every doll baby she has, she calls "Parker." We hope she is as warm and welcoming to her sibling when he/she arrives.

While Maggie was quite happy, Parker had enough. It didn't seem to bother Maggie that Parker was crying though.

Maggie is "reading" the program while we wait for Daddy to walk in. When he did walk in, she wanted to go up with him. Instead of going up, when family came in, she informed them that "Daddy, up there."

Maggie did very well sitting (or rather standing and cruising the chairs). Whenever they clapped, she would get on my lap and participate as well.

There's Daddy!

The Hooding

Andy signing Dr. Andrew Bixler for the first time! Hooray!

He's a Doctor of Psychology and we're very proud of him!

Though Maggie was very happy to see Daddy, it was quite a crowded hallway. Maggie wasn't used to so many people in the same area.

Congratulations Andy!

Swimming!

I was going to post a blog last Thursday evening describing how Maggie surprised both Andy and me, but as I have learned about our life... it can change in a minute.

Maggie had her physical therapy appointment with Nancy last Thursday, in which Nancy pushed Maggie to walk on her own! She took 8-9 steps all by herself. We were so surprised that Maggie was able to do this all on her own. Nancy has said that the recovery Maggie has made is remarkable given all that she has been through.

However, on Saturday morning as I was changing Maggie's diaper, she began to complain of her boo-boo while pointing to her ankle/leg. The mere act of lifting her legs to change her diaper re-aggravated her fracture. We assumed the worst, that Maggie would again take about 2 weeks to start walking. This really devastated us, as Nancy said Maggie would probably be walking on her own around the house by the end of the month.

Maggie has shown signs of promise though since her boo-boo. She started putting weight on it and pushing her toys once again by the end of Saturday evening. While she is not where she was on Thursday, we will definitely take this. She walks very gingerly on her right leg and favors it in certain situations. When trying to independent walk, she has lost some of the strength in that leg and so is too wobbly to take steps. However, she stood for me tonight all by herself while we counted to 20. She could have gone longer, but it's a game to her to fall into my arms then.

Who knows what happened to her leg. Just re-aggravating it, breaking it all over again? We don't know, but we've decided she is one tough cookie to be walking on a healing fracture. She continues to surprise us.

Maggie had her long overdue pulmonary appointment on Friday. Dr. McDowell saw Maggie right after she left ICU and went to the hemoc floor. Maggie had moved from 1/4 liter of oxygen to 3/4 liter and the oncologists wanted a pulmonary referral. So when Dr. McDowell saw Maggie this past Friday, she was very pleased. We had been told before we left Cincinnati that sometimes kids can be on oxygen for weeks, months, even years. Maggie was off oxygen within the first 2 days of being home. Upon listening to Maggie, Dr. McDowell said she sounded very clear. We were told that we no longer need to give Maggie any diuretics or potassium supplements. We were also told that depending on her immune system tests, she might also get to finish taking her anti-viral & anti-fungal medicines. That would leave us with just her antacids that we will most likely keep on for a very long time. She also got an x-ray of Maggie's lungs since the last x-ray done on May 2 was still showing fluid on the lungs. The x-ray showed no fluid, however it did show some of the remnants of her ARDS from the pneumonia. She was very happy with the report. I, on the other hand, wished that there were no signs of the 10 weeks we were in the hospital. Andy did remind me that one of the ICU doctors said it can take up to a year for the lungs to fully recover from the insult Maggie received. We just continue to pray that Maggie will not be vulnerable to any illnesses and that her lungs will heal completely.

With the exception of the boo-boo on Saturday, we had a good July 4th weekend. The highlight for Maggie was most likely swimming with her Aunt Stacey in the big pool. She had so much fun swimming and kicking that as she was looking at the pictures I took of that day, she wanted to go swimming again.

We continue to have good days here with the exception of our boo-boos. It feels like we are in a cycle when it comes to her leg, but we hope that Maggie gets to walking soon so that we don't have to worry about this anymore. Maggie continues to be our joy and we are delighted she is doing so well. Thank you all for your continued prayers.

Aunt Stacey took Maggie for a swim. This was a big accomplishment as Maggie is often very shy about going to others. We are happy she enjoyed Aunt Stacey and wants to go swimming with her again.

Maggie is chillin' while swimming in the BIG pool.

Maggie wanted me to take this picture of her eating her ice cream cone. You can't tell but she had ice cream on her face. That's what she wanted a picture of.

"Cheese!"