Wednesday, 2 May 2012

Hoping....

I am trying not to read too much into this.  But both John and I have noticed that Nathan is stimming less this past week.  The monotonous sounds are less, the flapping is less frequent as are the periods where he is "unreachable".  Of course, we know that he is on the antibiotic and the nystatin, so maybe we are "looking" for something.  Whatever.  This little boy is babbling more than he has in a long time.  He said "quack" at school yesterday.  He used to say "quack" all the time last spring....then he stopped.  So the fact that this is the word that came out really means something to me.  He is also VERY opinionated this week- refusing half of his regular food, throwing his cup at me when the supplements are in his juice, literally wrenching Jack off of me when he hugs me (hey jealousy).  Hooray!!!  I emailed the pediatrician, and she agreed that maybe he is still having a yeast issue....these things have a tendency to be chronic.  So we'll look into that when we are seen by the new doctor at the end of the month.  See?  Doesn't 6 weeks feel really long???

In the meantime, mommy is an email and telephone fiend.  I have finally mentally wrapped my head around the fact that participating in research studies might be the best route to go to get the boys optimal care.  I mean, I worked in an educational institution, almost all of my patients were on research protocols.  But somehow, when it's your kids....  The good news is that many of these studies are diagnostic...blood draws, saliva tests, checking for metabolic abnormalities or different types of overload to their little systems.  If these things are discovered, they may be treatable.  But the treatment is not necessarily part of the study.  In many cases, the treatments are standard.  The studies are more about determining how many children classified as "on the spectrum" may also have that particular issue.  So it's not as though the kids will be getting a bunch of medications, etc.  Some of the other studies involve behavioral therapies/modifications.  Once again, this will do no harm.  So why not?  Why not have more people weighing in on their issues?  People with excellent qualifications?  I have learned to combine and compare these opinions, not allow them to wreak havoc on my decision-making (well, most of the time).  I have come a long way from the day after Jack was born.  The lactation consultant was telling me to give him nothing but breast milk, the OB literally told me I was starving him, and the pediatrician told me his constant need to feed was actually "non-nutritive" sucking (how is this possible when he hasn't yet had anything to eat???)  and he needed a pacifier.  I almost pulled my hair out.  I have come to realize that while doctors have a lot of training and have seen a lot of cases, NO ONE knows my children as well as I do.  So I will compile these opinions and sort through possible interventions, and make the best decisions I can for the boys (with daddy's help).  For right now, of course, I have to wait for them to call me back!  And I am not a patient person....especially when it comes to the kids!  blah

My other project this week has been toy "reassignment".  When I spoke with the educators about Nate's lack of focus last week during the home visit, I was venting at one point and said that sometimes I feel like I should put at least half of the toys away.  To my delight, they agreed.  There are just too many distractions...and all of those battery powered toys?  My lord, we really need to buy stock in energizer!  Those toys are so....(annoying), I mean stimulating to kids that don't need any more stimulation than what their little brains are already providing.  So after the boys were in bed last night...out went the talking cookie monster, out went most of the "computers", etc (kept a couple for Jack).  Other than that, I kept blocks, shape sorters, balls, musical instruments, cars....you know....regular toys.  Funny thing is when the kids came downstairs this morning, they didn't even seem to notice.  Small steps, I know, but it's all I've got this week.  Oh, and we are working with Nate on his PECS pictures.  So far he threw one at me....so does that mean he wanted what was in the picture?  sigh.  


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