Wednesday, February 20, 2013

Much Needed Update

Just a warning:
If you plan on sticking with me to the end of this, get some tea, or coffee, or something....  You may need it...  ;)

I realized I never did sit down for an update about the last appointment we had...  They had to see the audiologist and the speech pathologist. This appointment was Feb 6th.  (here we are TWO WEEKS later!!!)

Curt had to be out of town for the week so I grabbed all kids and books and such and headed out for Children's in DC.  While Kotah went with Ella with audiologist, I went with the others while the SP saw XJ. She asked me a few questions while he played and then she watched him and got some things out and asked him to play, or throw the ball, or take turns..  Which color ball do you want.. etc.... 

Then it was time to switch.  The SP had an interpreter come in. I'm still slightly confused as to WHY she had him come in.  She knew sign... It's one of those, why didn't I ask when I was there?

Anyways, this SUPER tall guy comes in, and I felt slightly uncomfortable.  Not sure why, but brushed it off.  Ella would have NOTHING to do with him, didn't even acknowledge he was in the room, completely ignored him.  She was not comfy with him at all.  So the SP said, ok you can go.  Again, I have no idea why he was there. But it's over.  :)

So she asked the same questions, and did the same stuff with her as with XJ.

I told her the different between to the two are their learning styles, how quickly they learn and pick up, or how they don't pick up some things, etc...  (This was before Ella came in...)

She then listed off this and that and I'm like whoa...  Too.much.info.to.comprehend.  ;)

She said, I know you homeschool and this may be hard for you to do, or to put them in a school, or understand, but XJ needs to be put into a school that is solely a deaf school so he has that one on one interaction, all the time.  he also needs to be put into therapy to help with his fine motor skills b/c he signing is sloppy. Ella needs to be put into a school where there is sign language and talking so she can see and hear both.

Ok, in my head, you DO NOT tell me "this may be hard for me to understand or I may not want to do this". I didn't like her so much after that.  I'll be honest.  I've gotten enough negativity from people, I don't need it from a SP too.

So I very kindly and nicely said.  Look, I've prayed for these guys since we got their referral.  I prayed that God would give me direction on what to do with aides or CI.  I will do anything in MY POWER to help these guys, and if that means putting them in a school, then I will.  It doesn't matter that I homeschool, that doesn't mean I'm against putting them in a school. But I also have to consider my other kids, the time it will take, how far it is, and how much it will cost me.

Now back in my head slightly upset still, do NOT tell me how I will respond.  You don't know me, you don't know my heart or my situation.

Then talking with the audiologist that day, I just felt off. Completely.  Here I am told in the beginning that if these aides don't work, we need to move fast.  Then when I ask when we need to see the doc to do the test for the CI, you are telling me you don't know how soon?  Ugh, really. So this time I am getting completely mixed messages of the first few visits.  Way to confuse a girl.  ;)

I left that day not knowing when the next time I would get another appointment.  As far as I knew, it would be a month from now.  Which is fine, but please don't tell me we need to move fast if the aides don't work, then slow way down, or give me another story.  Not cool.

I'm already at this point not sure that I want Ella to get the CI's.  She hears fine with the aides, which I know she will lose all her hearing one day, and I do know that the sooner you get the aides, the better. I also know she isn't fully hearing all levels of hearing which is not helping her in her speaking, or soon to hopefully speak. Do I really want to put her through this all?  What will she think when she's older?  Why did mom and dad put her through this?  What if she wants to be deaf?  God help me.  I'm confused.  I need peace on this decision.  At this time, Curt is at peace for both getting them. I was completely at peace for XJ getting them just to be aware of his surroundings.  It's for his SAFETY that I mainly want them for him.  He gets hit by shopping carts b/c people behind him don't know he is deaf, they think he is a little boy just playing around and not paying attention.  Ok, so thats partly true, but add deafness to it as well.  I want him to be able to hear his surroundings.  I want him to hear his name too.  I think this will benefit him to the GOOD.  I fully feel at peace for going through getting one.  He would only get one b/c we are wanting it to help him be aware of things.  He may never talk, he will most likely always need sign language to communicate, and I'm TOTALLY ok with that. His age plays a big part in that as well.  He hasn't heard anything in all his 6 yrs of life.  He may not be able to form the words, and you know what?  That's ok.

Ella, if insurance will cover, will get by-lateral CI.  Which means, both ears.  We could do one ear, and then go back for the other, BUT, she would favor one ear over the other, she wouldn't hear the sounds the same bc with the CI it sounds like KIT from Knight Rider.... (well, not exactly b/c things have improved since then, but you get the idea) ;) And surgery two times...  :\

So needless to say, I left that appointment, mad, confused, and just hurt.  I was seriously ready to chuck the hearing aides and be like whatever, I don't need this stress.  They are learning sign and will just keep doing that and forget it.


I then get a call the next week by the audiologist saying she had an opening for them today.  I was kinda reserved when she called.  I was like oh ok.  Then she said do you have any questions about anything? I said well, I was thinking there was something about XJ, but I don't remember what it was.  She said ok, well, if you think of it, email or call me.  Then I said, wait, remind me again why you are wanting Ella to have them now and why you are pushing them?  So she explained it all.  I just couldn't fully remember EVERYTHING, when talking to Curt about the visit.  I said I think it's to help her hear all sounds and be able to talk better.  And the fact that she is younger she will benefit better from it now than waiting til the aides don't work anymore.  And she basically confirmed it, just using a few different words.  ;)  She then proceeded to say that we as professionals don't always remember that we don't discuss things very clearly.  But I have noticed that when I don't, you do the thinking and researching and always come back with a good question.  One that you can tell you thought about before asking.  There are no "stupid" questions but you by far ask the most intelligent ones and it's obvious the way you are asking things. The first time I met you with all your kids I was thinking oh boy, but I look forward to our appointments.  Your kids listen and are well behaved, and love that you are going through this as a family.  The SP even mentioned how IMPRESSED she was with how much you understand your kids and how you know how each one learns and that not every one who is deaf learns the same way. She was very impressed with you and your kids. Our audiologist then said she was impressed with how well they;ve adjusted, and it's like they've been with us all long.

I then said something along the lines of thank you.  Then something like, I just want to make sure I'm doing the right thing.  I'm asking bc I don't fully process until the next day, or talking with my husband it hits me, like oh, um...?  I said I'm not trying to get too "preachy" here, but I know that God placed them in our family for a reason.

She said some other things, but it's exactly what I need to here after that last lovely visit.  So then I was ready and refreshed, but still not fully at peace with Ella and the CI.

Then we had another appointment today where I had to take the CI questionnaire back in. That consisted of the gritty ?'s and how much we understood and all that other good stuff. Also felt like a few questions were the same, and really they were, just worded differently.  Talk about brain dead about filling that out!  ;)

Not sure when it happened and I know I had some awesome friends praying for me, but am at peace with Ella getting the CI's.

Did a few tests and talked about the CI, got to see one too!  Man, it's AMAZING how far technology has come!!!!  And the size of the piece that gets put into the cochlea...  WOWzers...  It's LITTLE!!!!  Then She told me where the incision would be, where they drill the hole, the magnet that gets placed into the head and covered by the skin, then the ear piece and the piece that gets placed on top of the magnet.  I asked, um, does the magnet ever make securitiy alarms go off?  ;)  She said not really, and they give you a card incase they would!  ;) Nice huh?  Also, if they would ever need an MRI, they surgically remove the magnet, do the MRI, then go back and place the magnet back in.

This "should' last them their entire life.  They could update it and get a newer version, but most insurances don't fully cover that.  The only thing we should have to replace are the batteries. Easy enough right?  ;)

We also talked a little about "normal". I said I dis like that word.   I said look at me and my family.  We are SO not normal!  I have 6 kids, 2 whom are deaf.  Normal is just a setting on the dryer.  She thought that was funny...  She hadn't heard that...  ;)  anyways.  I said, we've gotten negative comments about doing the CI.  But this is NOT a decision that has been taken lightly.  Infact, I struggled, ALOT, esp with Ella getting them. But I know that I am at peace, and that's what I asked for.  I know that if we weren't supposed to be going through this, God would make it clear.  But I don't see that.  I want respect from my friends and family (and strangers would be nice, but that won't happen I'm sure) about the decision that Curt and i made for our family.  You aren't in my family, you don't know what the best thing is for them and we truly believe this is the best decision for them. We aren't trying to "fix" them.  We love them regardless of what is "wrong".  None of my kids are "normal".  We all have something wrong.  God blessed us with each and everyone of them and He trusts us to make the right choices for them and to raise them.  And we truly believe this is the right choice. Each one has their own opinion and that fine.  But don't tell me I made the wrong choice.  I'm not going to judge you for NOT getting an implant, or even a hearing aide.  That's your choice, and that's fine.  But I know with MUCH prayer this is what we are to do.

So back home again, watching more signing dvds and going to keep learning!  :) Regardless of how much they can hear, we will alawys still be using sign language bc they still need that.  They aren't going to figure out what each word is and what it means, and voices.  Everything that Ella has heard will sound differently.  Surgery for ONE ear would be average of 3 hours, so two ears would be 6.  Plus, they will do both kids at the same time. Recovery time, un known...  They may even spend the night at hospital, but won't know all those details until we talk to doc.  Which that appointment is unknown as of now.

We have had a BLESSING at church!  This week has been the seconds week that we've had an interrupter coming!  The kids have responded very well to him, and the whole timing of that has been awesome to see!  :)  Just talking with Michelle at New Life and when Casey approached her, was about the same time we knew that Ella and Keegan were ours!  :)  His mom and dad are deaf, and his brother is as well.  Anyways...  It's been a blessing and so thankful for him and DeAnna allowing him to come and work!

Also had MSD (Maryland School of the Deaf) come last week for the 1st time. They will be coming 2x a month to work with Ella, mainly bc she's under the age of 5, BUT they work with the WHOLE family!  So each kid benefits from the lesson!  They will only have paperwork for Ella though.  Which is fine!

My younger ones have taken a turn for learning lately....  Thad, XJ and Ella...  need to find some more "work" for them!  Working on colors with Ella and XJ....  The teacher from MSD said they may understand it before they can sign it.  Which is proving to be true...  Sometimes...  ;)

So that's where we are at right now.  Told you it was long...  Thanks for sticking with me to the end if you did!  Thank you for all you prayers!  We are still in the middle of this awesome journey!

It truly is NEVER a dull moment in this house!  :D

1 comment:

Stephanie said...

Mandy, keep trusting God in showing you what decisions to make with your kids! You are doing awesome! :) It's inspiring to hear about your journey of adoption and now with figuring out the best ways to deal with their deafness. You are such a wonderful momma! ;)
-Stephanie