It's About Time for an Update!

I've thought about this blog a few times recently and I realized that I left it on such a bad note! I think that most of you who read this know me in real life, and therefore didn't need an update on Sweet B. But there are those of you who don't know me and those of you who know me from a distance, and you've taken the time to know about her, and so I would like to tell you how she is! It's been hard to acknowledge what I've written here and reread our trials, but I've come to the place where I can.

At one time I believed that I would be able to close this blog with a neatly wrapped up happy ending. Something like, "And she had all of those problems but she got through them and we're all the more stronger for it." Well, I can't wrap it up like that now but I have such wonderful things to share!

I left you with posts of how her cyclical vomiting syndrome (CVS) was ruling and practically ruining our lives, as well as a surgery to get rid of her stone-infested gallbladder and too many hospital stays. The past year has been a dramatic change. She started preschool in a special needs school, where half of her class has special needs and half are typical. She has blossomed in her speech and is now speaking in complete  sentences a lot of the time. She just turned four but her birthday was supposed to be in September, so in micropreemie terms, she's not four yet. We've learned that she is VERY social, taking after Mike and his mom, who will talk to anyone about anything  and befriend anyone in a second. For a few years now it has been my plan to homeschool Sweet B and Strong B completely (and being a former public school teacher, I was totally against homeschooling!) Now I see that she thrives with other people, so I'm considering sending her to kindergarten and then doing homeschool a partial portion of the time, like three days a week, which is actually becoming more common these days.

She's funny. She's sweet. She doesn't throw temper tantrums (unlike Strong B :) and she is very easy to care for behavior-wise. She's got a huge imagination and can sit in a car while we drive for hours, pretending that her fingers are people and that they've got lots of funny scenarios going on. She's beautiful.  Oh my goodness...she's a beauty. She's got determination and will let you know if it's unfair that you're not giving her something that she needs. She tells us that we are "annoying her" and let me tell you, Mike does not take that well!  She loves her little brother and makes him play house with her. She's got the best personality!

Medically, she's still got issues and these issues are very exhausting for us physically and mentally, but we are getting so much better at it.

She's still on the feeding tube for 99.9% of her calories. We give her bolus feeds three times a day and she's on a continuous feeding pump all night. She has started eating small bits of yogurt, smoothies, ice cream, Popsicles, cheese, Oreo cookies, and graham crackers. I am very confident that she will eat someday. I've learned not to give her a deadline or make any predictions with a timeline.

She's still in therapy for her cerebral palsy because she has left-sided weakness. She's starting to be able to walk up and down curbs and stairs by herself. This summer I stopped the physical and occupational therapy and instead enrolled her in swimming and dance lessons. She did so well in both and I'm happy that we took a break! 

The biggest medical issue is her cyclical vomiting syndrome. Remember that she's unable to vomit due to her stomach being wrapped around her esophagus surgically. I can't tell you how much better she's doing with this! We have a system down with her and her school nurse has the system down as well. At one retch we give her zofran and we give her Ati.van at the next retch. We've been able to significantly shorten or abort her week-long episodes, and this has dramatically improved the quality of her life, and ours as well. We are able to predict how much water versus formula to give her in her feed, and she is able to tell us if her head is pounding or if she needs medicine. She does need medicine quite often and we are always watching her for any sign of an episode: retching, little coughs, pale face, watery eyes, even more left-sided weakness where she tilts to the side quite noticeably, grumpiness, crying, tiredness...It's often a guessing game!

There's so much more that I could write, and I actually have a few more blog posts that I'd like to get up soon regarding how I am doing navigating the needs of my daughter as well as the energy of my typical son. (We use the word typical instead of normal, because really, who is normal??) You might recall that it's been quite a struggle for me...I want to put it out there so other special needs moms can read it. We need to be honest! I'd also like to tell you about how we will be meeting with the feeding team very soon and what that will entail.

I try to remind myself often that she came from very very small and scary beginnings and that she is doing very very big things that we NEVER even imagined that she'd do! 

*I realize that the font changed at the end. I can't edit this from my phone, so it'll have to stay.

I love that you can see her g-tube poking through her leotard.