Wednesday, August 28, 2013

LET THERE BE SOUND!

Well besides the usual therapies for Lil Bill things have been pretty calm appointment wise the last two weeks.

This week though we did make it to see the neurologist.  I was nervous going there, the neurologist appointment is one of the more nerve racking ones for me.  But to my surprise not a whole lot happened there.  I mean we already know about the two PVLs, the loss of brain tissue on the left side, and the small brain.  We also know that Lil Bill is delayed with gross and fine motor skills, and that he is tighter on his right side.  While this is concerning to the neurologist, we are in this 'wait and see' period.  Lil Bill is about to be one (yay) though adjusted he is only 8 months.  They typically do not diagnosis until the child is around two.  So the treatment is the same that we have been doing.  Physical therapy and occupational therapy weekly, and speech and feeding therapy will start next week!  It is a little frustrating being in this wait and see period but at the same time it is nice to know there is hope that he will make great progress before getting a diagnosis.

And yesterday we FINALLY got the hearing aids!! I never thought I would be super excited to get hearing aids for my son but I was.  They are unsure that they will help him so we will be following up monthly to track his progress and adjust the settings if needed.  So fair the verdict is inconclusive! Some moments I think that he hears, and others I can scream from behind him and he won't even know.   I have been testing him with every noise I can think to make, if he can hear me I almost feel bad for him because I have been a little loud and crazy :)  But I suppose nothing has changed since that was the case before too.  So that is another wait and see thing that we are in.  Waiting to see if the hearing aids will help or if he will be a candidate for the cochlear implants.

Of course tonight we heard one of his hearing aids clicking.  We couldn't find anything about it in the manual so we will have to call tomorrow.  Technology is a blessing and a frustration all in one.

Tomorrow we will also finally be getting the C PAP machine.  Lil Bill will need to wear it for naps and overnight sleeping.  It is hard trying to ad two different things into our routine in one week, the hearing aids and the CPAP but I know we will adjust.  I will update to see if it helps any within the next couple days.

Also we got the OK from G.I. today to switch his feeds again! I was so happy we are getting back to our 'normal' feeding schedule.  He can now get ng tube fed 6 ounces in 1 hour, 5 times a day.  We can still feed him by mouth during his off times of feeding but they do not want us to subtract what we are feeding him by mouth from his tube feedings yet.  I see this being a problem but I will wait and see before I question them. The goal is to not need the tube anymore and if Lil bill if getting fed that much through his tube I am worried he will not be hungry enough to even try to feed by mouth.  We will see how that plays out!

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