Thursday, September 27, 2012

{Finn Update}

Finn had another ABR (hearing test) done today and GREAT NEWS the hearing in his left ear has improved!?!  On his previous test I was told that he had no fluid in his ears which meant that the mild hearing loss was most likely real true blue mild hearing loss.  So I wasn't expecting much of an improvement with this test. 

BUT the test showed him hearing at the normal 25 decibels whereas before on his last test he was hearing at 40 decibels (40 decibels=mild hearing loss).  There was only one sound/pitch that he had to have at 40 decibles this test and that is the sh/ch sounds.
We must be doing something right.  What a blessing.  With this change in his numbers, I was told that he definitely is not a candidate for hearing aids.  A double blessing because our insurance doesn't cover hearing aids.  They are Expensive!  He will have a couple of more tests done in 6 months to see that his hearing is keeping in check.

After visiting with the ENT and looking at Finn's saturation levels while sleeping from his sleep study, I was told that I needed to keep him on oxygen.  I haven't been putting him on oxygen lately because he looks and sounds fine when he's sleeping.  He's not waking up like he used to a month ago.  Come to find out, although he looks like he's sleeping he is getting restless sleep.  Which basically means that he isn't getting good quality sleep.  Waking up 17 times while sleeping and 26 times during REM sleep.   
And so the battle with the cannula begins.  He moves and rolls around and so the cannula (the thing that shoots oxygen out in his nostrils) is always coming out.  I am constantly checking on him and putting it back in place.  He also has these two little round band aid looking stickers that he has to wear on his face all the time to help keep the cannula in place.  They only gave me 5 sets, so I can't keep taking them on and off his face because they lose their stickiness.  So I have to leave them there all the time.  Even during the day when I take him places. 
I asked the doctor how long I should keep him on oxygen.  He said well, bring him back in a year and I'll check him.  WHAT!  One year????  That is a long time.  I may be having his cardiologist check him out sooner.....
I finally made my reality of having a child with Down Syndrome official and I made the call to the early intervention people.  The people who come and evaluate your child and tell you what kind of intervention (therapy) he needs.  I felt very blessed and proud after hearing her say that he is doing awesome.  Wondering if she was just being nice, I asked and prodded with questions as to where Finn stood up to other kids she's seen with ds at his age.  Not that I should compare, as all kids are different, but she said that he is at the top end of the spectrum.  What she said is by no means any indication/diagnosis that he is or will be high functioning.  It is just at that moment of observation that he is doing very well.  He could be totally different at her next visit.  Still such great great words to hear.
The only area that was lacking was his neck and low muscle tone.  So we will be working on getting his core and neck muscles strong so he can hold his head up.
So Finn is doing great!  He is such a cutie!  He loves to talk and will stare and talk (coo) to you forever.  And he smiles All.The.Time.  He is a happy baby.  He only cries if he's really, really hungry.  And when he really gets crying it's hard to get him to calm down, even with his bottle.  He gets so sad/mad that he cries because he is sad/mad.  So, feed him before he gets to the cry stage and you're good to go. 
He really is doing great.  And I am grateful.


Lisa said...

This is great Kanani, way to go Finn! He is such a cute,sweet, happy baby we are lucky to have him as part of our family.

ashleyboice said...

Kanani, I love reading updates about Finn. What a special baby. Yay for good news!

Alicia said...

Brought me to tears because I am so happy to hear this good news. But also brought me to tears because my brother didn't have any such news. For years. He wasn't supposed to live. Learn to walk or talk. He learned to walk. I prayed for 7 years, as everyone in my family did that he would learn to talk, and he started to copy words when he was about 4 years old. But then for whatever reason, he stopped that all together and never said another word. But he is such a sweet brother. And I love him and I was just thinking yesterday in fact that I would never wish for Heavenly Father to change Josh because I think of all the wonderful blessings/experiences/spiritual testimonies/etc. that have come to my family because of him and I wouldn't want to miss out on those. It sound selfish because of course, I'd like Josh to be healed and I know he will be someday, but I'm profoundly grateful for his positive influence in my life. I think all of us in our family would be worse-off without having our special Josh.


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