Thursday, September 20, 2007

A Bad Day



Yesterday we met with a developmental pediatrician in Spokane to have her take a look at Kailey, the Cute Deaf Baby. Honestly, the wife and I thought it was going to be just one of those things you have to do--everything seems like it's been going fine, we're really happy with how the PT has been going, we've got speech therapy lined up to begin soon, life is good.

We left the appointment devastated.

Dr. V has a sterling reputation and she's one of the name doctors in a town that doesn't have many. She came in and gave CDB a basic physical, then she lays it on us, "Her muscles are underdeveloped-she's hypotonic."

Oh. But what does that mean?

"Well, in a third of cases they outgrow it and you'd never know. In a third of cases they're always like this, which pretty much rules them out of athletics. In a third of cases, it gets worse."

Oh.

But what does that mean?

"I also think she has some facial abnormalities, especially there in the bridge of her nose. There's a syndrome that encompasses deafness and facial symptoms called DiGeorge's. I'm going to go ahead and order an MRI so we can see what her brain function is doing, and we might want to consider an EKG just so we have a baseline in case there's heart problems in the future."

....

When you're in the middle of a tidal wave you don't pause to wonder where the water is coming from, you paddle like hell and try to keep your head up. That's what it felt like sitting in this doctor's office hearing all these things about your child.

Afterwards Mrs. and I went through the stages of grief. She worked in depression and denial; I focused on anger. Rage, really. Who the *uck was this lady to look at my daughter for 5 minutes and make these sweeping proclamations about who she is and what she could be? Sure, I want to know WHY she's deaf, but please don't put my wife and I through a God-damned fishing trip just for the hell of it.

She also recommended that we pursue getting services from the Spokane Guild School, a great organization set up to help profoundly disabled kids. I'm having a hard time with that one, too, for some of the most horrible, petty reasons. The Guild School is for kids who have big, big problems. Autism, Downs, and worse--the kinds of illnesses where your life is measured in months instead of years. A small comfort we had with her deafness was the thought that, hey, things could be worse. This appointment was a first step down that road, to worse.

Mrs. held it together OK in the Doctor's office, but when we took Kailey to her next appointment, with the teacher of deaf kids, she broke down hard. I was doing pretty good until then, but seeing her like that got to me. Kailey's teacher is exceptional and gave us a lot of pointers about where to go next, and it was good for my bride to have someone more rational than I to talk to.

We came to acceptance in the evening. Maybe the doctor is a quack, maybe not, but let's have the testing done to see. Let's look into getting a second opinion. Let's talk with the Guild School, because anything that we can do for our daughter we will do.

It's hard to think about going back to teaching tomorrow when every ounce of my being says I need to be here, but life goes on. Things may have stopped temporarily in the Grant household, but the world goes on around us and we'll need to go on with it. I've decided that everything will be OK, because it's easier to go along believing that than it is the alternative.

If those of you out there with a spiritual system would send a prayer up with Kailey's name on it, I'd be grateful.

Parenting is a new adventure every day.

Labels: , , ,

3 Comments:

Blogger ms-teacher said...

I am the older sister of a brother who has Prader-Willi. Over the years, my parents have experienced many doctors who always seemed to focus on the bad and almost reluctant to share any of the positive.

My parents learned over the years that in order for him to be successful, they had to be his biggest advocate. They were told he would never live independently and yet, he has lived in his own apartment for over a decade.

Your baby girl is extremely lucky to have parents like you and your wife.

4:27 PM  
Anonymous Anonymous said...

Ryan

Just know that our thoughts are with you.

6:03 PM  
Anonymous Anonymous said...

豆豆聊天室 aio交友愛情館 2008真情寫真 2009真情寫真 aa片免費看 捷克論壇 微風論壇 大眾論壇 plus論壇 080視訊聊天室 情色視訊交友90739 美女交友-成人聊天室 色情小說 做愛成人圖片區 豆豆色情聊天室 080豆豆聊天室 小辣妹影音交友網 台中情人聊天室 桃園星願聊天室 高雄網友聊天室 新中台灣聊天室 中部網友聊天室 嘉義之光聊天室 基隆海岸聊天室 中壢網友聊天室 南台灣聊天室 南部聊坊聊天室 台南不夜城聊天室 南部網友聊天室 屏東網友聊天室 台南網友聊天室 屏東聊坊聊天室 雲林網友聊天室 大學生BBS聊天室 網路學院聊天室 屏東夜語聊天室 孤男寡女聊天室 一網情深聊天室 心靈饗宴聊天室 流星花園聊天室 食色男女色情聊天室 真愛宣言交友聊天室 情人皇朝聊天室 上班族成人聊天室 上班族f1影音視訊聊天室 哈雷視訊聊天室 080影音視訊聊天室 38不夜城聊天室 援交聊天室080 080哈啦聊天室 台北已婚聊天室 已婚廣場聊天室 夢幻家族聊天室 摸摸扣扣同學會聊天室 520情色聊天室 QQ成人交友聊天室 免費視訊網愛聊天室 愛情公寓免費聊天室 拉子性愛聊天室 柔情網友聊天室 哈啦影音交友網 哈啦影音視訊聊天室 櫻井莉亞三點全露寫真集 123上班族聊天室 尋夢園上班族聊天室 成人聊天室上班族 080上班族聊天室 6k聊天室 粉紅豆豆聊天室 080豆豆聊天網 新豆豆聊天室 080聊天室 免費音樂試聽 流行音樂試聽 免費aa片試看A片 免費a長片線上看 色情貼影片 免費a長片 本土成人貼圖站 大台灣情色網 台灣男人幫論壇 A圖網 嘟嘟成人電影網 火辣春夢貼圖網 情色貼圖俱樂部 台灣成人電影 絲襪美腿樂園 18美女貼圖區 柔情聊天網 707網愛聊天室聯盟 台北69色情貼圖區 38女孩情色網 台灣映像館 波波成人情色網站 美女成人貼圖區 無碼貼圖力量 色妹妹性愛貼圖區 日本女優貼圖網 日本美少女貼圖區 亞洲風暴情色貼圖網 哈啦聊天室 美少女自拍貼圖 辣妹成人情色網 台北女孩情色網 辣手貼圖情色網 AV無碼女優影片 男女情色寫真貼圖 a片天使俱樂部 萍水相逢遊戲區 平水相逢遊戲區 免費視訊交友90739 免費視訊聊天 辣妹視訊 - 影音聊天網 080視訊聊天室 日本美女肛交 美女工廠貼圖區 百分百貼圖區 亞洲成人電影情色網 台灣本土自拍貼圖網 麻辣貼圖情色網 好色客成人圖片貼圖區 711成人AV貼圖區 台灣美女貼圖區 筱萱成人論壇 咪咪情色貼圖區 momokoko同學會視訊 kk272視訊 情色文學小站 成人情色貼圖區 嘟嘟成人網 嘟嘟情人色網 - 貼圖區 免費色情a片下載 台灣情色論壇 成人影片分享 免費視訊聊天區 微風 成人 論壇 kiss文學區 taiwankiss文學區

7:01 AM  

Post a Comment

<< Home