Medical Update

We are in need of pictures on here... next post, whenever that may be...


So this past week, we've had some follow up appointments.


Monday, it was the Sleep Study results... Peter's apnea had improved from 5X/hour to 2X/hour... but the doctor still recommended CPAP (a mask you wear at night that's hooked up to a machine that keeps your airway open... positive airway pressure)... great.  There was immediate prayer for the Lord to help me be open to the idea.  They told us a tentative plan to get him used to it, which by the way included another sleep study for the first night hooked up to CPAP (um, I don't think that is gonna fly with the boy and I DO NOT blame him.) So we were gonna play it by ear as the appointments went on...


Tuesday, it was our first neurology appt since April (thank you, Lord!).... just to follow up.  Obviously, he has been doing really well.  We can not say that we have seen any seizure activity so we are continuing with more of the same... which is great.  Please continue to pray that would be true.  Lord, heal our boy!  My main gripe about neuro appts/assessments is that they feel 90% subjective based on  our report.... argh.  Altho Peter has been doing so well in general in the last few months, in the last week he has had more behavioral problems in my opinion... more impulsive, not a lot of self control, a complainer, out of that "mature" phase I mentioned recently.  So I never know what to make of it.  I've never had another boy obviously, but there are times that he is just so different than our other little (tho she can have a case of the 2's lately, but smaller scale)... my data group is small and only includes two so I don't know exactly what to make of it.  But we'll go with it.  So the great part is that we could talk with his neurologist about his sleep study.  She does not feel that his sleep study is "bad" enough that it plays into the picture with his seizures.  So I guess that's good (and bad).  She felt like CPAP sounded a bit extreme.  So she told us she'd schedule us a consult with another neurologist who directs the sleep center at VCU.... that it may be a few months (after we'd have had to make the decision with the St Mary's doctor).  Well, the VCU doctor himself left us a message yesterday!!! My jaw stayed on the ground the whole message.  He was the first neurologist we saw at Peter's first admission last winter.  We adored him but he only sees patients in the sleep center (and makes inpatient rounds).  He's felt like this great & wonderful doctor that we just aren't "allowed" to see (and he left a voicemail for us!!  WOW!)... SO... today I called him back.  And talked to him, right away!!  What?!  This is SO rare for us!  He was as wonderful as I remember... calm, kind, smart (really smart), fatherly.  He said that he spoke with Peter's neurologist and reviewed his sleep study report and that he is "under-whelmed" with Peter's results.  We do NOT need to treat him.  His results were completely in the range of "normal" for his age.  WOW!  We are so relieved!  It is such a blessing (and answer to prayer!) that we do not have to "decide" whether to follow the original doctor's recommendations.  I feel really good about it.  More still, I talked with him about Peter's daytime breathing.  He said that is also not of concern to him.  It sounds familiar (he is the first doctor to say that after telling five doctors about it).... it could be related to his muscle tone as I suspected but its not detrimental to his health (only my nerves).  ;)  So my plan is to have him just sit in an upright chair (to encourage better posture) to watch TV and ban him from the couch (tho, I better have low expectations for this)... I am learning that my "black and white wiring" rarely really works.  Ah, sanctification... 


Peter and Lily are off for the weekend with Maw and Paw to see Copper and ride the tractor... oh, fun childhood and fun weekend with my favorite person.  OH, and painting! (pictures to come sometime... who knows when....) and a trip to the river house!!