Get Back to Your Corner

This is what makes the blog hard to upkeep sometimes. Make that most of the time. Before stupid Rett, I loved sharing all of the good, all of the funny, all of the great moments in our lives - especially when it came to Gabriel and Anna. That's what made the title "This Stefanie Matters" so laughable. I started it as a joke - as a play on words for the identity crisis some women go through when they become mothers (and I sometimes joked I had) - and of course, I ended up writing more about my kids than about myself. Hence, the complete tongue-in-cheekness of the title itself.

Sure, I shared my weight loss journey back in 2008 and 2009, and I'll probably share that again since I had a weight gain journey in 2010!! Sure, I will share some funny moments with the hubbers, we laugh a lot. Sure, I will share all of Gabe's fantastic accomplishments (he just started his first pre-season baseball training clinic on Sunday) and his hilarious moments. Sure, I will share how special and edible Anna is. But I get really pissed - nitty, gritty, downright angry - when I update the blog after 3 weeks of absence and share a backlog of some truly wonderful moments in "this Stefanie's" life, and since that update, Anna's GI issues have taken a tremendous turn for the worse.

It is painstakingly annoying to want to forever remain upbeat and positive and then have that light taken away from you when the monster called Rett comes in and slaps you - and your daughter - across the face. It leaves me feeling silly; it's as if Rett says to me, "How could you go and think I could let you be happy for more than a few days? Don't you know I am always here in the corner, watching your every move, waiting to strike again?"

I don't like to be told what to do and I especially hate feeling helpless and out of control. I wish I could be saint-like and be closer to God in these moments, get swept up in prayer and have faith that it's going to get better, but I am no saint. I no longer ask "Why" or go to the land of "What If" (although I still throw stones at healthy little girls Anna's age, and at their mom's too). I no longer feel paralyzed. But I always fight sadness and helplessness, and no amount of Church-going has solved that (yet).

I read this somewhere: There is currently no cure for Rett Syndrome, just a treatment of its symptoms. 

Anna's "symptoms" are: 

screaming fits and panic attacks 

inconsolable crying

no speech

coordination problems

hypotonia 

can't stand or walk unassisted

can't sit up on her own 

difficulty swallowing

needs feeding tube for hydration and nutrition

apraxia

microcephaly (small head) 

teeth grinding

tremors

spastic hand movements

poor sleep

GI issues (poor weight gain, constipation, reflux, etc.)

Let me just say something:

I can handle ALL OF THE ABOVE. Really, I can. It's do-able and attainable. I can deal with everything listed above. Before Rett entered our lives, I would've thought, "How awful! That is a terrible disease!" I couldn't imagine knowing someone with Rett and knowing what to do or say. I'd pray for them. A lot. 

But the one thing I can't handle, that makes me grind my teeth at night when I sleep and is the cause of so many helpless tears, is that last one. The GI issues. 

Once again, our poor Anna hasn't eaten in 3 days. It started Friday night, when she vomited up everything she had that evening. Then we tried to feed her very light fare on Saturday - applesauce, rice cereal - and she threw up everything. Then we tried just straight bottles. She threw up everything. Going into Sunday, we switched to just straight Pedialyte, because she was so dehydrated her lips were cracking. Then she started throwing that up. We have narrowly missed a hospitalization (for today) by stopping all oral feeds and feeding her Pedialyte through the tube. She's been on a constant pump of it since 10 a.m. this morning, and we aren't stopping. As long as she is tolerating it, we are going to continue it. We've had 2 wet diapers in 24 hours. 

It sickens me and disgusts me that her reflux is so bad - so out of control - that it is robbing her of any quality of life. It depresses me. She threw up at 4 a.m. and it got in my hair. All over my robe. Down my legs. I was so exhausted and so numb to the amount of vomit Manny and I have cleaned up in the last 3 days that I just threw my hair back in a ponytail so I couldn't smell it and tossed the robe and went back to bed. I woke up smelling dandy, let me tell you!

We've done an enema, laxative stimulant, upped the dosage of her stomach emptying Rx, and cleared out the congestion in her chest from the refluxing. 

I spoke with GI at 9:05 a.m. Poor doc sounded like he just rolled out of bed and into my nightmare. I had to get 30 oz. of Pedialyte into Anna or we'd be admitted. She's at 23 ounces and vomit-free right now, and the pump is still kicking. We are switching her to an amino based formula. Ellacare. Casein-free, gluten free, lactose free, FREE... Just pure.

Her two-day gastric emptying test came back, which we had done a few days before Christmas, and it showed "mild reflux." I had to stifle my laugh when I heard the results said "mild." Shows how much a test can prove. Speaking of (more) tests, Anna has an endoscopy scheduled for this Friday. 

I have my whole heart wrapped up in this Ellacare. I am praying to God that this works. The doc - and us - want to avoid a fundoplication at all costs. Ellacare is supposed to arrive tomorrow by noon. Then we wait and see... 

Hopefully, we can shove the Rett monster back into the corner for a while.