Catch-up

Triggers. There are so many triggers. Just an innocent word from someone else's conversation two aisles over in the grocery store. Articles online. TV shows. Well-meaning friends or family. It's nobody's fault and I can't blame them - how can you ever know what someone's mind is thinking? I can't fault someone for saying something they will have no idea may be a big trigger for me. 

Sometimes I find myself lost in deep thought - to the point I have no idea what is going on around me - just deep, deep thought. What ifs, what dids, whys... Then I feel guilty because I have a survivor. I often feel so left out, even in preemie world. Yes, I have a micro-preemie, but aside from a few things, you'd never know. I don't mean to sound ungrateful about that, because I know how incredibly blessed and fortunate we are that she doesn't struggle with some of the things her friends struggle with. Not long ago, an article circulated around Facebook, whose title I will not mention, that really, truly upset me. It was written from a special-needs mom's point of view and talked about how she hated to see the "good news" from other moms about their preemie/special needs kids, because she herself couldn't write those posts. While I understand and sympathize with her feelings, it upset me because my child has worked HARD to overcome the things she has. Not at all to say the author's child hasn't, but I shouldn't have to keep quiet about our jumped hurdles because she doesn't want to hear it. As mentioned before, I often feel left out in both term and preemie communities - I had a micro-preemie who is still catching up, so we don't fit into the "term" community; I had a micro-preemie who is doing incredibly well in most areas, so we don't fit into the "micro" community. Just where DO we fit? I'm still trying to figure that out.

Ruthie started pre-school on Mondays and Wednesdays this fall, from 9-2. She absolutely LOVES it but the germs do not love her. She is currently sick for the third time since September, with an ear infection and a raging fever that Tylenol and Motrin are barely touching. Part of me is screaming "take her out of there and keep her home" and the other part of me knows that this is only building her immune system, tiny piece by tiny piece. We have to keep climbing if we're going to get to the top of the mountain one day. Did I mention how much she LOVES school? She gets so excited when I tell her it's a school day, and runs to the front door (usually in her diaper) and points to go out. She loves her teachers and the playground, and I think she tolerates the other kids as long as they don't get too close to her beloved blankie. ;)

Therapies are going well. She is still getting OT once a week for an hour, with our beloved therapist we've had pretty much since the beginning of the gtube. She is working on strengthening Ruthie's chewing abilities and working with her on drinking more than a tiny sip, and swallowing it instead of letting it flow out or choking on it. 

We started back on physical therapy a few weeks ago. Ruthie had another eval and it was determined she was a few small issues - balance, coordination, strength - that need addressing. She gets PT every other week for an hour with a new therapist that we really like. In just two sessions I've seen a big difference in Ruthie's ability to go up/down steps without using her hands to crawl up, and her confidence has been boosted now that's she's seen she can do it.

Speech therapy......I've put off writing this for awhile because I was so, so angry about the situation. Before leaving for Atlanta, we specified multiple times over multiple visits to our prior therapist that it was VERY important to us that we not lose our session with her. She assured us it would not be a problem. I still don't know if it was circumstantial or we were intentionally lied to, but I will tell you my mother's heart says the latter. We spent our eight weeks in Atlanta and I contacted all our therapists and caseworker, as planned, the week before we came home so therapy would be reinstated. I received a forward from a forward from the case manager, saying our session with the speech therapist had been taken and Ruthie was being handed off to another therapist. 

We were devastated. This had been one of the best therapists Ruthie has ever had - great repoire with her, great handle on her behavior/attitude, great progress - Ruthie has been with her over a year and truly loved going to these sessions. I was shocked. I went straight to the supervisor, only to be told it was the therapist's idea to move Ruthie, and that she thought we'd be fine with it b/c we "knew" the other therapist. Excuse me, we saw her TWICE, in a session that she didn't even lead. She knows nothing about Ruthie. Ruthie does not know her. We do not want a new therapist. I felt intentionally misled about the whole situation and the supervisor wasn't willing to do anything about it. What made me so angry was that the therapist KNEW how important it was to us that we not lose this session, and yet she was the one to recommend moving Ruthie. Why would you do that? Why would you just screw over the feelings of your client's parents when they had made it clear how important it was to them? Who does that? I understand a work life is about moving up in your career, but if lying to people and going back on your word is what it takes to get you there, you can consider any testimony you may have been trying to show gone. The fact that we weren't even notified or told personally by the therapist was incredibly unprofessional - had I not received that forward from the case manager I wouldn't have even known we had been booted. All in all, we as parents were very disappointed in the behavior of what we had considered a very professional and likeable therapist, and you can understand why we would take it personally. This is our CHILD - she depended on you for this therapy and you just passed her along like she meant nothing to you. Maybe she didn't. If not, I misjudged you the whole time. We wrote a letter of complaint to the manager of all managers and left the company. We are now waiting for a therapist experienced in speech apraxia and are hoping to be started next week with a new person. It sucks for Ruthie because she has to get to know and trust a new person, the new person has to get to know Ruthie and what makes her tick, and we have lost precious time all because it was more important to go back on her word than be honest upfront about the possibilities that she HAD to know where in front of her.

That paragraph's been a long time coming. ;)

Ruthie is doing so very well - she's eating, she's trying to talk more, she's on the move constantly. Some days I think about how it would be to have another, to have a brother or sister for her to play with. Some days I think I'm ready. Some days I know I'm not. All of the what-ifs and the knowledge of the 2,975,461 things that can go wrong in a pregnancy/birth are now permanently etched in my brain and I'll never be able to let that go. I would stress out every.single.day of a (hopefully) 40-week pregnancy. Am I ready for that? I don't know. I won't know until we're in the thick of it and I have no other choice. But as far as worrying about a repeat of Ruthie's birth, I think I'm finally letting myself think it could have been a one-time fluke....

And for the first time in 27.5 months, I can finally say....I think I'm moving on. Finally.

How about some stats for this girl? :)
Chronological Age: 27 months, 2 weeks, 3 days 
Adjusted Age:  24 months, 0 weeks, 0 days

Weight:  22lbs even - still having trouble gaining 
Height:  32.5 inches

Head circumference: 18ish inches

Diapers: size 4...barely - I've debated going back to 3s but we're using the potty now so we'll wait :)

One-Pieces & Dresses: 24 months for shirts and one-pieces; pants are about 18 month

PJs:  24 months 2-piece jammies most of the time or 18-24m one-piece jammies

Shoes: size 4s...on the rare occasion she wears them now

Teeth: 10 on top, 10 on bottom, currently cutting the 2yr molars (LAST TEETH!!)

Naps:  Usually 12:30-3:00

Sleeps:  7:30/8:00pm to 7:00/7:30

Feeds: she EATS!! We only use her tube now for liquids during the day, and her food is all pureed. We are working on ground texture, but she takes ALL of her daily calories by mouth. :)