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Friday, June 11, 2010

Mikey Update 6/11/10 and Trusting God

This will be brief because I'm exhausted in every way one can be exhausted, but I haven't had a nervous breakdown, as one might from the prolonged stress in this seemingly unending stream of medical events.  So that's Me: 1 Stress: 0.

Mikey is 3.5 weeks past his surgery.  He is healing great and has no side effects, like decreased range of motion or infection.  Speaking about motion, however, he is still battling his prenatal musculoskeletal issues.  Although he is getting stronger little by very little, he still has considerably decreased range of motion in his neck and severe upper-body weakness.  The physical therapy isn't working, though the home exercises are helping the very little I just mentioned.  I think we need to find a new approach for the physical therapy, since he screams bloody murder the moment the therapist touches him.  (It's definitely not her; she's wonderful.)

He had his feeding evaluation this week.  I'll jump ahead to the after-effects of being given the all clear to feed him by mouth.  He took a few sips of milk at the appointment, then an eighth of an ounce that afternoon, a quarter of an ounce that evening, have an ounce a half hour later and an ounce before bed.  There were a number of other smaller feedings before and after the bedtime meal, too.  At some point yesterday, he threw up (a lovey side effect of seasonal-allergy snot production), sending his NG tube shooting out his nose.  I decided not to put a new one in and see what happens.  The feeds got bigger and bigger, including one four-ounce feed (though he took an hour and a half to do it), so we left it out overnight.  Well, as before the NG tube, Mikey woke up only once to eat last night, and my attempt to wake him up to eat another time was met by a small snack, far less than he needed.  I tried today to get him to eat enough, but he was still short, so we put the tube back in tonight, which broke my heart.  Still, maybe Sunday on my birthday we can take it out.  Positive thoughts!

Here's the trusting-God part.  I'd been stressing about the evaluation since the barium swallow two weeks ago.  Speech pathologists are notorious for being pushy and breastfeeding hostile.  Additionally, I discovered that the SP from the swallow, who'd been so wrong in so many ways, including refusing to give us the all clear to eat, was a possibility for our evaluation.  I stressed all the way up until the drive from work, where I left Ellie with Dad, to the hospital.  A peace came over me as I told myself that God will give us the exact therapist we need.  Period.  As we waited past our appointment time to meet our mystery therapist, the SP from the swallow peeked her head in and waved hi, though I must admit she looked a little put off seeing me.  I immediately tensed from her presence, but then she disappeared... only to reappear at the other door to usher us into her office.  I plastered a smile on my face and followed her instructions, stiff as a board, braced for a fight.  Suddenly, however, she started talking about getting Mikey breastfeeding.  I was stunned.

As the conversation went on, she insinuated that I knew Mikey best and what was best for him.  She also told me repeatedly that she was impressed with work I'd been doing with him at home, that I have a good gut and a good read on my child.  Toward the end of the appointment, she asked me what my background was, since I knew so much about child development.  That is just about the biggest compliment I've ever received, since I have no background beyond my own children and what I've picked up from professionals around me, like my mom, the chiropractor (the wonderful Dr. Ross) and the lactation consultant (Go, Debbie!).

As the conversation went on and on, an hour past the end of our appointment, I learned that she desired to become a lactation consultant and she had a lot of field experience with lactation and breastfeeding.  We also talked about the SP stereotype of being breastfeeding hostile and self important, among other negative qualities.  I realized that whatever had gotten between us at the swallow had dissolved rapidly, and now we were talking like friends.  I had a flash back to my God Breeze, as Flylady calls it, that God would provide the exact SP we needed.

Finally, we have a new issue at hand that most of you know nothing about.  I apologize for telling you in this medium, but it's just easiest to have all the information laid out so that perhaps it comes across more clearly.  Around four months of age, Mikey went from having an unusually-perfectly round head to having a flat spot suddenly accompanied by a bulge out to one side on the back of his head.  We'd already been practicing postioning and stretching, so this was doubly a shock: first because of how rapidly it appeared and second because he was no longer favoring the flat side so much as to make it flat like that!  Well, we buckled down even tighter on the positioning and stretching, and at five months we got the referral to physical therapy.  He was just shy of six months old at the time of our evaluation.  Since the surgery was coming up, the therapist told us to keep up with what we were doing until we started a regular regimen in June.

Our first official therapy appointment, at seven months old, within an hour of being told that we were completely done with the surgeon (check one thing off the list), revealed a recommendation for a helmet, called a DOC Band (add another thing to the list).  I refused to take the information and left that appointment crying out of frustration.  She had told me that positioning rarely helps, especially not after six months of age, and that the DOC Band takes longer to work after six months of age.  I was upset that she hadn't brought it up a month earlier, though she later explained that she originally thought the positioning, et al, would have been more effective.  For the record, we did see a slight improvement in his head shape over the month.  Still, she thinks the DOC Band will be effective, and the feeding therapist thinks it might help with the assymetry in his face that attributed to his refusal of the breast at birth.

So, here we are: physical therapy, cardiology, craniofacial surgery (no, he's not getting surgery; the prescribing doctors just happen to be surgeons), feeding therapy... I think I got it all.  For those of you praying for us, please keep in prayer the following issues: Mikey learning to eat properly, specifically the use of his tongue; Mikey going back (or finally going) to the breast; his neck and back stretching and strengthening appropriately, especially so that he gets back on track developmentally; The VSD (hole in his heart) closing on its own, as the doctors think it should; and effectiveness of the DOC Band.  Oh, and please throw in one for his allergies.  We tried meds, and they didn't make a dent.  Stupid pollen...

1 comment:

  1. Soo sorry things have been so rough but you are AMAZING (I don't think I could do what you are!) and you have an even MORE AMAZING God looking out for you!!! Praying for you!!!!