First, Maggie was seen by a new GI doctor at Cincinnati Children's yesterday. Overall, it was a promising visit. First of all, it was encouraging in that the doctor spent over an hour with Maggie and Whitney getting information and providing some insight. That's amazing, and we're grateful. He has a few new ideas to try and has already ordered some more tests. He wants to avoid more scope procedures (whew!) and isn't in favor of bowel rest (i.e. starvation). That's good. Over the last number of weeks Maggie has eaten almost non-stop and her weight keeps on coming back low. So we seem to have an absorption problem and we will see in time how a new approach might help. In the meantime, he is trying to manage the diarrhea more aggressively than ever, so that could help, too.
Next, tomorrow (Thursday, October 8) is Maggie's 2nd birthday. We are so proud of her and blessed to have reached this day. Again, when she was first diagnosed, we felt that 3+ months would be an eternity just to get to her first birthday (we had no guarantee that she'd get that far). We plan to celebrate quietly at home as her party was this past weekend. Whitney will likely share some pictures and stories from that time in the coming days. Maggie says (in her cute, shy, quiet voice) "two" when we ask her how old she'll be tomorrow. She seems proud as well, although she doesn't understand what it all really means. So, tomorrow will be a joyous, proud, and hopeful day.
Lastly, Maggie has been acting beautifully the last few days. She has played with her toys, talked quite a bit (she repeats us a lot and has been saying new words every time we turn around), and even has been flashing her million dollar smile for us. Tonight she said "no" to me (like she sometimes will do if she's in the wrong mood) but this time she had a sly grin on her face while she said it. Joy has been robbed from her for long, long stretches of time. But tonight has been a true delight. Early in maintenance Maggie would feel poorly until about 2 days before the next round would start. Lately, she hasn't recovered at all before she starts the next cycle. This time, we have about a week of good times and that is such a nice surprise. Monday we start it all again with chemo and steroids.
6 comments:
It's so good to hear about some typical 2-year-old stuff! Tomorrow is truly a milestone. I have become convinced over the years that while children aren't consciously aware of these milestones, they are subconsciously aware of changes taking place. Sometimes that leads to trying behavior and other times - joy and pride. Happy Birthday Maggie!!
So nice to hear good news, and I am sure you feel the same way! It sounds like some answers to all the GI stuff is on the horizon : )
Happy Birthday Miss Maggie, and congratulations to you, her parents, who have brought her this far, with your love, concern and wonderful care. God Bless,
Monica Miyashita
Happy Birthday Miss Maggie!!
SO happy to hear the GI appointment went well and the doctor seems dedicated to figuring out a solution for Maggie's diarreah.
Happy Birthday, Maggie!!! Claire and I are sad we could not keep our playdate today, but you girls will get to play together soon. Love you!
Happy Birthday to you Maggie! Wow, you've turned the big 2. So young for such a life!
Many prayers going your way for a fun relaxing weekend and an uneventful next week.
Happy 2nd Birthday Maggie!
So happy to hear she has had some good days :-)
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