Sunday, November 25, 2012

Pics and testing update....

I had a call from my friend Lori yesterday (HI!!!!)  ..........she reminded me that others may not have heard about Connor's recent test results. simple format

Eye testing....this appointment takes awhile because the eyes have to be dilated......also, not a good idea to bring any extra kiddos....the office was packed and once the eyes have been dilated you are sent back out to the waiting room until you're called again (it was about a 45 minute wait).  ..........anywho, Connor's eyes received a "PERFECT" diagnosis from the doc.  This was awesome.  We were worried slightly just because 50% of Pierre Robin babies have Stickler's Syndrome as well.  Most Stickler's babies have some form of near sightedness, degenerative eye disease or glaucoma.  Also, they can have some major joint issues as they get older...along with hearing issues.

Hearing (ABR) test.........this was a major worry because one day Connor can seem fine and the next, we've not been so sure.........same goes with hearing tests he's had thus far in his test  he'll pass, the next he'll fail.  .........the ABR goes past the tiny hairs of the middle ear and gives a much better result............anywho, Connor has fluid issues and this is why he has ear tubes.....He'll have fluid issues for some time so we just have to always watch for signs that go with that...........but other than that, his hearing test went great.  We were a little upset because instead of a general sedation they put Connor down with general anaesthesia.  The reasoning is that he is simply a Pierre Robin baby and they fear breathing issues will arise when it's time to wake him up.  .........I, personally, am not worried about these issues because I believe his jaw distraction opened up his airway big time.  ..........anywho, the results were that he had "normal to learning speech" hearing.  Most of his results were normal with a few in a range where low tones could be an issue.  Basically, this means that in crowds or settings with alot of background noise, he could have some minor issues.  ........because of his fluid issues, he'll need testing every 6 to 12 months.  And unless there is a major concern, his tests can be more of a behavioral setting and simpler hearing tests than the ABR (meaning we don't need to put him to sleep)., for all major purposes, these results were amazing.  He's good........we'll continue with speech therapies and learn some basic sign language.

His visit with the craniofacial dr/plastics............his prosthesis is looking great.  We tried to move Connor's surgery date to December in hopes of this bill being on this year's insurance..........but, the doctor felt Connor needs to wait until the January 30th date.  It sucks financially but obviously, we'll make it work so Connor is getting his very best care.   .........apparently the prosthesis is not only there to help Connor with his feeding's there to try to stretch what little bit of a palate he does have so the doctor can have more skin to use during the repair (umm...not sure if it's skin now that I type this...but he needs more of that pink area on the roof of his mouth).  ........anywho, that was a good visit too.  Quick, painless, another doc saying Connor looks awesome.  :D

Swallow study.....he's still an aspirator so will continue on thick formulas and foods......he'll not get another official swallow study until after his palate surgery.

Basic pediatrician appointment....Connor's weight is going up BIG time...he is over 17 and a half pounds.......he went from not even being on the growth charts to now he's in the 20th percentile range...NICE!  .......he had a flu booster shot and we changed out his g-tube.  (for all I've done for Connor to take care of him, I do not like placing the g-tube though his pediatrician had me do it so she could know I knew what I was doing)......the changing of the tube is pretty simple...remove water from the balloon, pull out old tube.....wipe disgusting contents (sorry is sort of gross) off his new tube in the hole in his tummy, and then place 5ml of water in the new balloon.  Voila....done.    .........we decided he was the best looking little chunky baby ever and called it a day.....and yes, your baby is awesome too but he/she was not in that, my baby was cutest    :D

Speech therapy....Connor still uses his haberman bottle and has chewed massive cracks in the tops of his bottles...there is a bit of concern that he is downing the formula too fast but the facts are, he will not take another nipple and for all major purposes, he is doing fine.  He'd probably have more problems if we went out alot and kept him in germy environments but we stick to keeping him home and just a few close friends.  He does get a bit rattle-sounding still so we know Connor well enough to know when to keep him inside or away from too many people.   ..........he has another appointment this week and we'll decide then if it even makes sense to continue his outside speech therapy.  .........he'll continue to have someone from Early Intervention stop by the house once a month to check on his feeding and also he has a separate speech therapist that will start teaching  us the best ways for learning at his age (meaning books and slowly intonation and actual working on words).  .........our speech/learning to speak lady has us simply showing books with babies faces, showing their emotions, ....books with mirrors.....and songs with a bit of signing in the has tons of videos with signing if you want to work with your baby, Connor is doing great.  .......he has some appointments scattered on the calendar but he has a pretty easy schedule until his palate and tongue tie surgery at the end of January.  Our only major concern until then is just keeping him healthy.  ........we wanted to return some equipment he has on hold at the house because seriously come January we're back to the insurance game.  We are keeping his apnea machine that he is connected to at night until we're comfortable giving it back after his surgery.  There is always concerns of closing the palate and it causing new breathing issues........also, with his tongue being clipped, we need to know that he won't try to roll that back in his airway.     .......we're also going to keep the suction machine until the cold/flu season is gone.  This equipment is ridiculously expensive to keep when it's not used all the time but our pediatrician truly believes Connor has stayed out of the hospital because the minute he starts to get a cold, we have the means to keep his airway open by using this suction machine.  Thinking about it, we agree so will keep it until spring.    .........I'm considering talking to friends after Christmas about either doing a poker tournament or some crafty type fund raising.  The fact is, we qualify for absolutely nothing and we believe it's a good thing but we also don't want to continue running up our credit cards or spending our retirement account (borrowing against TSP for those in the know). .........we'll let ya know when we decide on what we'll do.

........anywho, some pics.


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