So i haven't posted in awhile. Not really sure I'm very
good at this writing thing, and I'm sure there isn't many people reading it. But today i feel like putting some things out there may help me shake a few feelings i have.
A few months back we have some assessments done at the Implant Clinic. I thought most of the testing was pretty good & we came out knowing that the Implant at this stage was an option but they where certain it wasn't an option for her right at that point.
Today the "formal" letter arrived in the mailbox. After reading it & re-reading it, i actually feel like i have made some decisions that maybe i shouldn't have, maybe i was hearing what i wanted to from them (being the experts) and maybe they where not being completely upfront when i saw them & spoke to them.
Either way whats done is done & we are 2.5 mths past the appointment with amazing things from Savannah.
Anyways back to the Letter. Basically it outlined what they tested & how they went about their testing. Her hearing tests from her audiologist & the CI audiologist where conclusive of a Mod/Sev loss in the L & a Profound loss in the right.
At testing age her age was 8mths 2 weeks. Here are her scores:
Sub scale Standard Score Age Equivalent
Auditory Comprehension 79 7 months
Expressive Communication 98 10 months
TOTAL language score 87 9 months
I think if Savannah wasnt saying anything like she is now, i would probably be worried, don't get me wrong i am still worried. Maybe the Implant with the Mod/sev ear will be amazing for her & she will not have to worry about trying so hard to use the one good ear she has. Then i think what if the good ear is enough for her, why put her through the extra tests & surgery? Why does the decision have to be so hard? It would make it so much easier if she could simply just say "Mum i can hear you or yes i understand."
Instead i have to make the decisions on her behalf, but what if they are the wrong ones? what if i should have gone ahead with the implant in Dec & not wasted all this time? I know now that there is nothing more i can do with the CI clinic until May when they re asses her, is it wrong to hold some hope that things will continue going wonderfully & we will surprise them? That's what I'm hoping. I guess maybe deep down i haven't accepted she might need the implant. I see so many wonderful blogs & stories on other children & babies with CI's that i know they are amazing & wonderful. They could open up so many different avenues for her. So why am i so afraid of making a decision?
I think giving me this 6mth break from the Clinic & constant appts will really let me know whether or not Savannah progresses. She is doing wonderfully now & her speech therapist is extremely happy at where she is for her age. But that could change at any day.
But what makes things a tiny bit easier is that i know i gave the hearing aides more time to work if they are all she needs. When we re-visit again in May the drs will then make the call as to her surgery & if she needs to have the implant.
Wish there was a button to fast forward in time & see how things pan out either way so that a better informed decision can be made..lol in my dreams right.
Anyway for the moment we will continue what we are doing, savannah has more hearing tests in March & then we will wait untill May to make the CI decision.
On another note Savannah is almost 1! She just cut her first tooth & Her bday party is in 2 weeks time. So looking forward to it. No sign of walking just yet. Just pulling up on the furniture & walking around on everything.
Our final genetic counselling meeting is next week to find out the ins & outs of the connexin gene testing etc...
We are 7 weeks away from welcoming another baby into the family & will be anxiously waiting to find out if he to will have the gene flaw.
Well thats whats going on in our household at present. keep an eye out for more updated.
good at this writing thing, and I'm sure there isn't many people reading it. But today i feel like putting some things out there may help me shake a few feelings i have.
A few months back we have some assessments done at the Implant Clinic. I thought most of the testing was pretty good & we came out knowing that the Implant at this stage was an option but they where certain it wasn't an option for her right at that point.
Today the "formal" letter arrived in the mailbox. After reading it & re-reading it, i actually feel like i have made some decisions that maybe i shouldn't have, maybe i was hearing what i wanted to from them (being the experts) and maybe they where not being completely upfront when i saw them & spoke to them.
Either way whats done is done & we are 2.5 mths past the appointment with amazing things from Savannah.
Anyways back to the Letter. Basically it outlined what they tested & how they went about their testing. Her hearing tests from her audiologist & the CI audiologist where conclusive of a Mod/Sev loss in the L & a Profound loss in the right.
At testing age her age was 8mths 2 weeks. Here are her scores:
Sub scale Standard Score Age Equivalent
Auditory Comprehension 79 7 months
Expressive Communication 98 10 months
TOTAL language score 87 9 months
I think if Savannah wasnt saying anything like she is now, i would probably be worried, don't get me wrong i am still worried. Maybe the Implant with the Mod/sev ear will be amazing for her & she will not have to worry about trying so hard to use the one good ear she has. Then i think what if the good ear is enough for her, why put her through the extra tests & surgery? Why does the decision have to be so hard? It would make it so much easier if she could simply just say "Mum i can hear you or yes i understand."
Instead i have to make the decisions on her behalf, but what if they are the wrong ones? what if i should have gone ahead with the implant in Dec & not wasted all this time? I know now that there is nothing more i can do with the CI clinic until May when they re asses her, is it wrong to hold some hope that things will continue going wonderfully & we will surprise them? That's what I'm hoping. I guess maybe deep down i haven't accepted she might need the implant. I see so many wonderful blogs & stories on other children & babies with CI's that i know they are amazing & wonderful. They could open up so many different avenues for her. So why am i so afraid of making a decision?
I think giving me this 6mth break from the Clinic & constant appts will really let me know whether or not Savannah progresses. She is doing wonderfully now & her speech therapist is extremely happy at where she is for her age. But that could change at any day.
But what makes things a tiny bit easier is that i know i gave the hearing aides more time to work if they are all she needs. When we re-visit again in May the drs will then make the call as to her surgery & if she needs to have the implant.
Wish there was a button to fast forward in time & see how things pan out either way so that a better informed decision can be made..lol in my dreams right.
Anyway for the moment we will continue what we are doing, savannah has more hearing tests in March & then we will wait untill May to make the CI decision.
On another note Savannah is almost 1! She just cut her first tooth & Her bday party is in 2 weeks time. So looking forward to it. No sign of walking just yet. Just pulling up on the furniture & walking around on everything.
Our final genetic counselling meeting is next week to find out the ins & outs of the connexin gene testing etc...
We are 7 weeks away from welcoming another baby into the family & will be anxiously waiting to find out if he to will have the gene flaw.
Well thats whats going on in our household at present. keep an eye out for more updated.
It is really tough being in that situation. Ours was more clear cut (severe-profound in both ears) but it was still hard making the decision to implant. Has your clinic put you in touch with any other families in similar situations? I know a family who have a daughter whose speech was great, good hearing aid user, but it took so much effort for her to listen. They implanted one ear around 2 years old, and then the other when she was 3ish. All the best with your decisions and good luck for the impending birth.
ReplyDeleteHi naomi & thankyou for your reply. I appreciate any input. How old is your child? I bet they are doing amazing with the implants. I have meet a fair few families through our deaf school that have had their children implanted but like yourself their decisions where a must & where needed to have any chance at speech at all. I have come across one family that their son had the same hearing loss but his sloped in the higher frequencies for the mod/sev but savannah is pretty flatlined across the freq which has helped. Their son was diagnosed at 10mths so when i meet him you could tell the difference between savannah & himself (not that its a bad thing) but you could tell he was picked up late. He wasnt even saying mmm or ahhh at 10mths so his mother was very adament that they would be doing the CI for him. What was your friends daughters loss?? Sounds like she did amazing, i have also come across alot of kids that used the aides untill the could & then where implanted at later ages from 2yrs onwards.Alot of the teachers & our speech therapist have told us to wait because every child is diff with how they cope & take to the hearing aides, whats good for one isnt so good for the other.But sometimes it doesnt feel right. lol sorry im rambling now. Anyway thankyou for the input i think we will most likely have to get the CI for the right side, but maybe just maybe there maybe some hope.. :)
ReplyDeleteI totally understand your hesitation. It is such a gray area for you and hard to tell if you are making the right decision. I think you are doing a wonderful job so far and have made all the right decisions. Savannah is doing amazing! The important part is early intervention and early amplification, which has happened. Those scores were great! I hope you get a better indication of what direction to head in May when you go back.
ReplyDeleteI'm trying to get an appointment with a genetic counselor, too. I've had a rough time finding one our health insurance will cover. :( I hope your appointment goes well next week and you guys get some answers.
On another topic, I can't believe Savannah and Sophie are almost one!! Holy cow, where did the time go?! Sophie isn't walking yet either, but I'm sure she will be soon. I hope everyone has a great time at her birthday party!