Up and Down

We continue to face challenges every day. Many of them are struggles with morale, patience, and time management.  We have been getting lots of help from our families though, which is nice and much appreciated. A sampling of what we're enduring:

1. Maggie still is not sleeping well. We've tried everything. We have been told by one of the doctors is that we'll have to let Maggie cry it out so that she can again learn to soothe herself and put herself back to sleep. We'll consider that, but last night's try resulted in Maggie pooping her pants and throwing up from screaming so hard. FYI, we know that many readers have had good success with cry it out, or with any number of other approaches. However, Maggie's circumstances are pretty unique, so your success stories probably won't help us. Two weeks of every month, Maggie has steroids in her system and they don't allow her to sleep. Further, they disrupt any cycle of sleep habits that we may have gained in previous weeks. Every month, we start over.  Plus, she just doesn't feel well at many times during her treatment cycles.  Our understanding is that many other infants with ALL seem to do better with sleep than her.   Maggie has never been a great sleeper, so she just doesn't handle all the extra variables well.

2. Maggie is slowly gaining interest in foods. So, in addition to nursing, she now enjoys grapes and coffee ice cream.

3. Maggie advanced from size 3 to size 4 diapers at 9 months. Now, at close to 18 months, we've gone back to 3s. She's a skinny little thing. She needs to gain weight. This is a bit demoralizing for us.

4. A physical therapy evaluation this morning confirmed that Maggie is not likely strong enough to make the next "steps" toward walking. She was estimated to have gross motor skills of a 9 or 10 month old. This was basically predicted when Maggie was diagnosed. She'll have PT weekly and we have exercises to try at home.

5. Sigh.... Maggie is cheering up more and more as the steroids clear her system. She was quite verbal today, which was nice because she was a zombie for the last week or so. She's getting to be more playful and is giving out lots of kisses.

Anyways, this journey is proving to be a real grind. It is tough and consumes us and our time. But we're grateful beyond words that the cancer has stayed away so far. We'll take these struggles if we can continue to see good labwork on our clinic visits.

Sorry to use the blog as a bit of a pity party. Some days just feel like this, I guess. But here's a story that we enjoyed last week. Maggie, toward the beginning of steroid week, couldn't sleep and wanted desperately to nap. She just couldn't. However, she apparently finds the sounds of mom or dad's showers to be comforting. I left my shower and found Maggie in this pose:

Two blessed and wonderful hours later, we heard the bathroom door open (not to the sound of a crying waking baby, which often happens) but to this:

It's a shame this doesn't happen more often.  I can assure you that our smiles were just as big.