Thursday, April 12, 2012

Endocrinology Visit for Summer & Alyona

This morning we went to endocrinology.  Summer's was a repeat visit to retest her sodium levels as they came back high last time.  Hoping last time was a fluke.  We'll see.  Wait for results of that and her urine sample.  When she got the blood draw, not so much as even a flinch or a tear.  I've heard some kids w/ c-ACC have a high tolerance for pain.  She may be one of them.  Yet, one of her sisters lightly taps her on the head it's an 'ow' for sure.  LOL.  So for Summer, a follow up and wait for the results the next few days.  Assuming we'll know something on Monday or so. 

Next, Alyona went for a recheck.  Hasn't been since 2006.  Just were checking on growth and seeing if there is anything we can do.  She has microcephaly, FAS, failure to thrive and a few other dx's that all can contribute to growth issues.  Last time she had a bone scan done in 2006, she was delayed in bone growth by two years.  This time, a little over a year delayed growth.  She has bone growth as an 11.5 yo would.  She'll be 13 in June.  They redid her blood work since it's been awhile.  I don't expect anything out of the ordinary.  She said she is following her on growth curve.  You can see it.  Just not on any growth charts.  Doc said we could give her more calories if we wanted to.  Such as adding olive oil to her mashed potatoes or rice.  Using pediasure.  I said do you realize how much that is?  She said we could use carnation instant breakfast or even add powdered milk to her milk for calories.  Doc said she is healthy.  I said I know, that's what our pediatrician says too.  Just a skinny healthy.  Alyona is one of those kids that could careless about food.  I mean not a bit.  Well, unless it contains sugar.  I told the doc she has gotten a whole lot better than she used to be so there's progress.  Now, doc guessed at about how tall she would grow.  Of course, no guarantees w/ that one either.  I think now she's at 130 cm. she said.  May grow to 143 cm.  Maybe.  I don't it but you never know what will happen w/ Alyona.  Anyhow, she does qualify for growth hormone therapy if we wanted it.  Nope, we don't.  It would only gain her an inch or two inches at best she told us.  Not worth that for her in my opinion.  Alyona would not do good w/ daily injections and frankly, that is not enough difference to make an impact on her.  She has idiopathic short stature.  Fancy name for being short.  LOL. 

If all blood work comes back okay, we are good to go.  I really hope it does.  Both for Alyona and Summer.  Got more happening but can't think right now.  We missed soccer practice this evening.  Been one of those afternoons.  Not being roped into the FAS lies and those who do it, are being punished.  It is something that many FAS families contend with.  For us, it seems to go in cycles.  We're in one now.  It's frustrating.  But, we get through it and move on. One tidbit I'll throw out there is if you are adopting older children be prepared.  They will lie to cover up.  They will try to make someone else sound like they've done something totally worse.  I mean outlandish stuff.  Logan is into this right now.  He's shocked that we're not believing him.  Umm, sorry kid but we've done this for 12 years now.  We got your game buddy.  Alex kind of gives Logan that I told you so look.  They'll learn.  So, burgers on the grill this evening and some cleaning up around the house.  I wouldn't mind going to the park later but not sure how late we'll be w/ the burgers.  Hey, finish grilling in time, we may just go.  Or, may just hang out here and watch a movie.  Depends upon behavior too.  Looking so forward to an awesome weekend.  Beautiful weather to watch the kids play soccer.  Then a nice evening shared with friends at the farm.  What could be better?!  More later. 

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