No Hearing Aid for Wyatt!!!

i have a HUGE PRAISE!  wyatt does not need to wear the hearing aid!   PRAISE GOD!   our pediatrician had recommended a second opinion since we had never been able to get a good tympanogram reading in wyatt's left ear, especially since he is about to get glasses.  there are two audiologists in the group that we have been using; one had recommended the bone conductive hearing aid, the other (who we go to church with) thought that wyatt did not need it.  he was right!!!

so after being encouraged to seek another opinion by not just our pediatriacian, but wyatt's speech and developmental therapists, we went today with the goal of trying to get a better reading.  kiddos with Down syndrome have such tiny ear canals that it is difficult to get good readings.   we are so thrilled that she was able to get a good tympanogram in both ears.  not such good results with the OAE, due in large part to the shape and size of his ear canals, but great results in the booth!  she recorded 15 db in his left ear  and 20 in his right (which is normally better than that!).   she said that her report would be that wyatt has "normal" hearing....not just for a child with Ds, but overall!   yay yay yay!  

i am so thankful that i followed my mother's instinct (God's leading...) and proceeded with more testing.  it was just such a hard decision!  it would just be so much easier if God would just write instructions on a tablet for us to read daily, wouldn't it?   i felt like i have been "beating a dead horse!"  i'm so glad my friend susan could go with me to "back me up with another set of ears" when tim was not available!  i always leave appointments wondering if i am remembering everything they told me when i don't have tim with me!  

so very thankful for this awesome news!!!   peace......

31 for 21: Day 29 How Much Does Wyatt Hear?

today turned out a little differently than i expected.  that happens a lot with wyatt.  i had to "play doctor".....  at least i had to decide if he needed to see a doctor!   ongoingly, i am not sure about wyatt's hearing, if there's fluid in his ears, if he has an ear infection, if he's congested......the list goes on.   it's so hard to tell with wyatt, he just does not express much pain, and has had an ear infection with no real symptoms.   he has only been diagnosed with one ear infection, but i am concerned that he may have had other infections that we were not aware of when he has been congested in the past. 

all that leads up to today.....actually last night.  as we were playing, wyatt did not respond to the squeaky sound of his discovery toys blue ball....and he was wearing his hearing aid.  we tried over and over and got no response.  he also had a glob of yellow/green snot at one point after he got upset about something.  this week he has also sounded kind of "chokey;" like he was gagging on drainage.  he was also playing with one ear, poking at it.  this morning i told his developmentalist (who is also an RN) all this, and she tried the blue ball again, with no response.  she recommended that i take him in and have him checked.  

i am glad i did.....the ENT saw him within 30 minutes, and prescribed an antibiotic for his sinus issues.  we talked a while about wyatt's adenoids and eustachian tube, and  my concerns that he might have blockage of his eustachian tube due to his adenoids.  he decided to order an x-ray of his adenoids, the only way to determine if his adenoids are large.  we know wyatt's tonsils are large, but he told me that they do not remove tonsils at this age.  ugh!    but they do remove adenoids if they need to be removed.  yay!   so we go back in 2 weeks to follow up on that.  

we also did a quick booth test there with our audiologist and he tested wyatt at around 20 decibals in his left year!  yay!   praise God!   previously he has tested at 35+, so this is improvement.  our audiologist also indicated that the booth at that office is not that great for testing, which means he might test better in their office.  i'm glad he tested that he is hearing better, but i am still concerned about the high pitch of the ball that he does not respond to.....maybe it's the congestion.....or not.....i just wish there were definitive answers somewhere!  

kiddos with Down syndrome often have hearing loss....it is usually conductive, which means it might not be permanent.   often as they grow, the ear canals enlarge and allow for better hearing.   they also often have problems with sleep apnea, which can be treated with the removal of their tonsils and adenoids, which might be large.   so that's just another medical specialty that i am working on!    

31 For 21: Day 25 Wyatt's Hearing.....

so wyatt received his bone conductive hearing aid last week.  i know that a lot of kiddos with Ds have mild to moderate hearing loss, and my goal is for him to speak as clearly as he possibly can.  the educational specialist at hope haven reminded me last week not to be so focused on his speech that i neglect other forms of communication (i.e. picture cards and signing).....i'm trying to remember that! 

bone conductive hearing aid

picture cards....

his audiologist is not convinced that he needs the bone conductive hearing aid.  his developmentalist and speech therapist think that if it helps him at all, then it's worth it.  i agree with them.  however, i am not sure how/when i will know if it is helping him!    i asked his audiologist this morning if he will give him the "booth" test to try and see if there is any improvement.  he said we can try that in a couple of weeks, once wyatt gets more used to it.  i THINK that he is responding to whispers on that side of his head, but i'm not sure.   he's probably only worn  it about 6 hours total since we received it about a week ago.  let's just say that he does not just leave it alone and go about his merry way!  he's done better with it than i thought, but it's a struggle. 

it does not look like i thought it would look; we were expecting the "baha" type that is worn on a stretchy "sweatband" type thing that wraps around his forehead.  this one is on thin metal strips that are like a headband over the top of his head, with the aid and receiver sitting behind his ears.  it does not look awfully comfortable; it has to fit rather snugly.  maybe he's getting in some good OT every time he "whips" it off his head!   every time i fit it back on him, i smile sweetly and say "thank you Jesus that Wyatt can hear!"  trying to convince him that this is a good thing!  

happy as can be! 

i'm anxious to see if there is any difference in his hearing test.  i wish that we could test him tomorrow....but i feel like i'm "bugging" our audiologist!   it would be nice to know if it's working!   last night the (very young) waitress at ihop asked us about it; specialists have recommended that her 3 year old, who has cerebral palsy, get an implant for mild hearing loss.   i'm glad that i was able to talk with her about it, from the little bit of experience and multitude of research i've done!   i love how God works through our life experiences to minister to and help others......

The "Right" Thing To Do....

sometimes it's just so hard to know the "right" thing to do. especially when it comes to your kids. i know that we didn't have the same types of "major" decisions to make with our older kids when they were so young! with wyatt it seems like everything is "major"....at least to me! i guess it's the feeling that i must do the absolute best for him, to give him every advantage.

so we're back to trying to figure out wyatt's hearing. seven months ago our local ENT and audiologist recommended that we put a bone conductive hearing aid on wyatt. we got a second opinion from a pediatric ENT at nemours children's clinic, to be sure it was the best decision. his opinion was not to move forward with any hearing amplification. long story short....i think that i made a mistake in trusting the second opinion. we saw him again a couple of weeks ago, and i just got the feeling that he really doesn't think it matters if wyatt hears well or not, since he has down syndrome.... i know that sounds harsh, but that's just the feeling i got...all that to say, today we saw our original ENT and she again recommended the bone conductive hearing aid...and so we move forward....

so i think we should have taken the more proactive approach several months ago. and i feel like i've wasted six months of good hearing for wyatt. good hearing that is foundational to good speech, which has been my greatest goal for wyatt...that he speak as clearly as he possibly can.

and i wonder, will i always be second guessing my decisions concerning wyatt? i know that i'm doing the best i can, but i guess sometimes it just doesn't seem like enough...

"WHY?"

this week we visited the ent with wyatt and she believes he will benefit from bone conductive hearing aids due to an estimated 30-40% conductive hearing loss. we really did not think that his hearing was that bad, he babbles like crazy, responds to us, etc. anyway, i just wanted to scream "WHY?" why isn't it enough that wyatt has down syndrome? isn't that enough for him to have to deal with? why does he have 2 holes in his heart that must be repaired with open heart surgery? why are his ear canals soooooo tiny that they can't place tubes yet and he needs hearing aids? WHY????? i'm so glad that my God, the Creator of the Universe, doesn't mind me asking questions, all these "why's". He's big and great enough to handle my little questions......and i know that He has a plan, that's "why!" and His plans are so much greater than mine, even though i can't see what they are! i'm so glad that i can trust that He's in control, and He wants great things for me and my peeps!