Therapy updates

[My apologies-- I have not read through to check for any grammatical errors, so please forgive anything you find!]

Physical therapy is continuing to be a success for Flara.  We've been working on getting her to sit on a little swing-- to help with her vestibular disturbances (CLICK).  She downright refuses.  This past week, I was able to coax her onto this lovely barrel-shaped device and actually move her ever-so-slightly.  Of course, she had to be distracted with a baby doll, I had to be riding with her, and when I started moving her beyond about an inch-- seriously-- she bucked.  But, we considered it a success!  The amazing thing is that later in the week, we were visiting with friends from out-of-state, and I had taken my girls and two of their little ones to the playground, and Flara grunted her want to get into the baby swing.  I had my doubts, but I sat her in and buckled her, and she smiled!  I then moved her verrrrry little, and she smiled even more!  She gave a couple of claps, then decided she could take no more.  I was so proud, though!  It's all baby steps, but we'll take it one at a time.

We now have behind us the speech evaluation and her swallow study... and, more labs.  This week was rough.  Speech evaluation...  eh.  That was interesting on several different levels.  One, Mike and I expected Flara to score poorly, but we did not expect her to score as poorly as she did.  Two, an interesting conversation between the therapist and me ensued.  Three, the report given to our physical therapist detailed not only Flara, but, me.  The swallow study?  Wow.  Labs?  Yuck.  Fasting for a child who cannot communicate or apparently understand-- horrible.... as I loudly exhale.

During the speech eval, Flara did not do much.  Or, say much.  Or, answer much.  To me: normal.  "Normal" in the sense that it is the everyday Flara that we live with.  I could sense the concern in the therapist.  I could see it in her eyes.  She told me that children typically do worse on the eval than they do at home, simply because it's out of their comfort zone.  I very honestly told her that this was spot-on accurate for how Flara is at home.  I was not going to try and inflate Flara's abilities or deny that she has problems.

The results given showed that Flara scored in the tenth-percentile for receptive language-- what she can understand.  For her expressive language-- one percent.  One percent.  Combined, her overall score is two percent.  The therapist's face said a bit to me that she didn't want to tell me how bad it was... she said it with hesitancy.  I just sat, shook my head, told her that, "well, it is what it is and now we know we need to work even harder."  I agreed that it was worth the drive to come twice weekly and I would continue on in learning ASL at home.  She said that would be good.  Our conversation turned to how we have gone to the same OB/GYN, but, with her current pregnancy, insurance dictates she delivers at her place of employment.  She said she has really high expectations, so she's a bit nervous.  The conversation led into talking about prayer, faith, trusting... she says, "yeah, I really, really love Dr. V, but, well, you know because you go to him, but the prayers can be awkward."  I said, "really?!!  Gosh, I love that about him.  That's what drew me to him in the first place.  I had just started at my new job and was taking care of triplets.  He walks in to visit "his" babies, walks over to me, asks how they are, then declares, 'well, praise Jesus they are doing so well.'  I went home and told my husband, and remember saying, who ever says Jesus anymore?  He was really sincere.  So, I found out who he was, then didn't hesitate to call him when I found I was pregnant with my first baby."    

We finished up our smalltalk, agreed again upon our plan of care, then went and set up our next appointment. I thought it all went well.  Honestly, I did have one very brief moment where I did think to myself that I could cry-- just a teensy bit-- because I just felt very badly for little Flara-- but, not because I felt overwhelmed by the results.  I actually felt a smidgen of relief because the results explained a lot to me about certain behaviors we have been experiencing from Flara.  I preceded the results on my facebook page with, "Glad my hope is in Christ alone..." because that's very honestly how I feel about it.

Apparently, though, the speech therapist told our physical therapist that she was worried about me because my responses were "completely inappropriate."  Can I say that that bothers me?  ... Because, it does.  It's not on the level of caring what her opinion is of me, it just bothers me because I really mean it when I say my hope is in Christ.  My response was perceived as I'm not dealing with the news well, I'm in denial (did I not say that I was very honest that Flara was acting exactly how she does at home so as to not inflate her scores?), and that I am failing to realize how big of a "problem" Flara has.  I had told her, too, that we've had so many really icky results over the past nearly 20 months, that nothing comes as a shock anymore.

Your daughter is in early stages heart failure.  Okay.  We can remove now the diagnosis of heart failure.  Your daughter is very likely not going to survive.  Congratulations, you're going home.  I'm really sorry, your daughter has had undiagnosed hypothyroidism and very likely can have brain damage.  It appears her body has done a good job of compensating so far, so it appears we caught this before it affected her brain development.  We're fairly confident Flara had a bout of missed NEC, and we're expecting to find that she has a very small portion of bowel that has died.  Great news, the tests came back completely normal.  Your daughter failed her hearing test on her low tones, and barely passed in the other areas we test.  Well, she actually managed to pass her hearing test, although she is barely on the line for passing.  We'll see you in one month to repeat everything.  Your daughter's brain hemispheres are not communicating; she does not know that her body exists below her neck.  Wow, great job, Flara is really coming along-- there's no reason she shouldn't be able to ride a bike, hold a pencil, and run across a playground.  

Need I say more?  I could keep going, but it's beside the point.  The course of a former micropreemie seems just as labile as their days in the NICU.  What can I say about it?  It's hard, but I have learned so much through this.  I've said it a billion times, but one of my biggest lessons is that God really, truly does carry us through our toughest times.  The peace I have experienced when it seems I should be most out-of-control is inexplicable.  But, it's there.  I don't grasp onto anything I'm told as being the "definitive" for Flara.  I don't know what God's plans are for my girl.  I just don't.  I can't.  All I can do is keep trusting Him with my life, her life, and all the little details in the middle.

I did repeat over and over again on my drive home my favorite verse:
     "Rejoice in hope, be patient in tribulation, be constant in prayer."  Romans 12:12

Always a good reminder for me, even now.  =)

Swallow study...  we did that on Thursday.  Flara had to fast, which made for an interesting morning.  After that very-long-winded explanation above, I will briefly say that we have major frustration issues with our FlareBear.  She has gone from our "Eternal Optimist" and "Eternal Sunshine" to a very often angry, screaming baby.  It's quite sad--  but, it appears it's because she cannot communicate her wants or needs to us.  =(  So, add that anger to a fast and the result is a bad situation.  Flara was out-of-control for the study.  One, she was scared beyond words-- she was like a frightened horse, flaring her nostrils, head pulling back, whites of the eyes fully exposed-- two, she was starving.  She wouldn't take anything she was given, so she had to have everything syringed into her mouth as she was screaming.  Her mouth would be so overstuffed, she would finally swallow... but, she had to swallow ten times for each texture.  The decision was ultimately decided to stop before she was tested on full solids because she was so upset.  What could be gathered appeared to be normal, but she did aspirate a few times, but during full-out screams.

We followed that with labs.  Flara has been in the lab enough to know where she is the instant we arrive, so she was screaming and twisting before we made it into the room.  Thankfully, the draw went quickly, and we managed with only me holding her down.  Typically, Flara takes three people to hold her down, with the exception of the "fluke" draw the prior visit where she sat quietly.  I'm still waiting for those results-- I expect I'll hear back Monday or Tuesday.  Her labs are a follow-up on Flara's last increase in thryoid hormone.

Once we were done, big sis excitedly led us to the gift shop to buy candy.  I've made this our tradition for all of our Children's visits.  Finish up the tough work and get a little break.  Both girls picked their favs-- Noël wanted a Snickers, Flara her plain M&M's.  Flara latched onto a little clearanced Easter toy for a dollar, so I let her get it, then Noël found a pink eraser puzzle horse that she liked.  Another dollar beauty!  She then dug to the very bottom of the bucket (it was large), knocking little boxes everywhere.  She kept saying, "oh, sorry," but kept digging.  I wondered what she was doing, but at the bottom she found another little pink horse.  I wondered why she wanted two (I had tried to show her all of the other choices), but after picking up our mess, she marched over to the desk, handed over her finds, then pulled out her money.  She took her little yellow bag, then reached in and pulled out one of the pink horses.  "Here, beebee.  Poor beebee."  Once again, my compassionate little Noël used her money to buy her little sis something to brighten her day.  Ohhh, I just love my little girls.

Noël has been a huge help in many ways.  I'm really thankful for her eagerness in learning signing.  I haven't counted how many signs we're working on now, but Noël has most of them down and has been using them.  Flara has been picking them up quickly, too!  I've been so tickled- she actually signed back, "dog," "light (on)," and "milk."  Mike and I have noticed a marked difference in her, too.  She has been laughing again, even yesterday after getting home from the hospital, and, playing again.  That's not to say we're still not having screaming fits-- I still feel like I heard an entire day's worth of crying, but she seems to be recognizing several of the signs that I have been doing with her, so we are starting to move towards a point of better understanding.  Two weeks' worth of training has given us encouraging results.

We are now awaiting an occupational therapy assessment, although it's already been determined she does need it.  With the swallow study behind us, we can now do the eating portion of Flara's speech evaluation.  It'll be nice to get her taught how to chew food (instead of holding it 'til it dissolves away) and hopefully to pace herself, so she's not stuffed like a hamster on a week-long journey.  Mike has given her the nickname, "Stuffin Muffin," which really makes us chuckle, but we eagerly look forward to living a day without having to finger sweep her from frequent choking.

Please do continue to keep our little Stuffin Muffin in your prayers.  It's been a long and weary road for all of us.