Monday, June 08, 2009

The ABR and giving Ben a chance

Today, Ben would have had his last day of school. He had an ABR instead. He really couldn't walk even close to steadily until after 3 today, so going back after was not in the cards.

We had to park in a garage we weren't used to. Out of 4 garages, we had always used the other 3. We found a space, and found the elevator. It was a glass one, with a glass, not metal, door.
We weren't watching Ben close enough. When the doors opened to the floor we wanted, he had his hand on the door. He must have thought he'd help push it open, or it just took his hand, I don't know. When the door slid into its pocket to get out of the way, Ben's hand went with it. I've never been so scared. Ok, maybe I have, but it was in the top 5. I couldn't budge his hand, it was wedged so tightly. Eric was with me (thank you, God!) and thought to push the "close door" button, so it would release Ben's hand. Katherine was terrified for her big brother, Ben was in pain and terrified. Actually, we all were just purely scared.

His hand will have bruises and scrapes, but never swelled much, although it stayed red the rest of the day. He uses his hands well, and claps so we are assuming it isn't broken. I really hope I'm not making a wrong assumption. We saw several nurses and a few doctors after this happened for Ben's appointment and mentioned his hand, but no one seemed concerned.

We were told to be there at 9. We were, even with the elevator incident. Ben was called around 9:30. We weren't "seen" until 10:30. The meds weren't given until after 12:45. By 1:15 it was done. then the doctor didn't stop by although I saw him walking in the hall, until 1:40. Ben hadn't had anything to eat or drink since the night before. We were put in a room without anyplace to lay down with a 52 pound, 8 year old, drugged boy. It was a challenge.

So, the results of all of this are: Ben's right ear shows low normal hearing. Ben's left ear shows mild loss. I had spoken with Ben's SLP earlier about what to do based on the possible results. She believes any loss needs intervention. She explained to me that Ben could have his class amplified, that he could have head phones with a microphone that would ampliphy, and a few other options. Of course hearing aid is in the list as well and I know they have become quite small.

When given the results, the attitude was clearly, and blatantly, "He won't wear the hearing aid, so why bother getting one " Any other type of intervention was not mentioned. If I hadn't asked and known there were other methods, I certainly wouldn't have learned it there. How disapointing. How maddening! I was angry about the whole day. Do they go through the motions of the tests, all the while thinking this? Do they think "why are these parents of this child bothering?"

After hearing this attitude from a few people, the doctor came in gave us the results the others already had and said, as the others had, "he won't wear a hearing aid, so don't bother". Then he said he'd see us again in a year. I told him we would like to make an appointment with their hearing aid people and got it set up by taking the paperwork down the hall and making the appointment myself. He may not wear one, or he may. He will decide that, not me. I won't deny him the opportunity, nor will I give up before I even try. We have insurance and I have always put Ben's needs ahead of anything we wanted to buy. If we end up with expenses I can't get covered by something. He is worth it. I'd rather my son be able to hear better than replace our 16 year old car, any day. I will give him every chance I can to be successful, and if it doesn't work, we will approach it a different way until we find an intervention or adaptation that does work.

Saturday, June 06, 2009

Last day, short

Friday was Ben's last day of school. Not the school's official last day. Ben's.

Friday at 11:30, Ben and I went to speech. (At a private therapy clinic) Eric picked Katherine up for one last "lunch date" as we will be changing Ben's appointment time from around lunch to later in the afternoon. This will help accommodate summer school coming up.

Ben was completely "on". He did as he was asked to do and if he didn't want to, he was willing to negotiate. (Cool!) Towards the end, he was on the "horse swing" which he asked for. I held up letter bean bags and the SLP asked Ben to identify the letter and then come up with a word that started with the letter. He came up with some great ones. Like N is for Nugget, who is the horse he rides at Miracles in Motion. I later heard he had been "on" at school as well. He has had many more of the "on" days lately. Whoot!

After speech, I took him back to school. One hour later, the phone rang. Ben had bad diarrhea and had thrown up. Wow, did I run out of here! He seemed ok when I picked him up. His skin felt cool to the touch. I bathed him, and babied him. He doesn't have a super appetite, but is acting ok. Hope we have made it out of this one. Wondering why on earth he got sick.

So, Ben didn't get much school on his last day. Monday is his "true" last day, but he will be getting an ABR done. This will test his hearing, neurologically while he is sedated. I'm sure they will do the other hearing tests as well. I don't especialy trust a behavior based test at this point.

Don't think I've lost it, but I'm thrilled to be able to worry about this. I have had so much else going on with his diet and health that checking on hearing slipped to the back burner. I believe he has tested with mild to moderate losses before. Nothing has been done. I wanted a new test to see where he is on this and then I want to be agressive about intervention on this. I've been talked out of doing anything in the past. I've read up more about hearing loss. I've heard some sound clips of what it might be like to be in a crowded room and try to have a conversation while you have hearing loss. It was impossible to understand. Could this be what Ben is hearing? Could this be why he hates crowded rooms so much? Especially the hard surface ones where everything echoes. I hate those, too!

Ben made so much progress this year in so many things. I'm so proud of him!


P.S. Thanks for bearing with me while I took a break. I have really missed doing this and will try to get back to it again.

Thursday, May 21, 2009

Apologies

I'm so behind on news here.
Let's just say, I've been sick for a while.
Something that got really bad in Hawaii...and am finally feeling a bit better.
Maybe I can catch up here soon.
We had an amazing time in Hawaii, even though I was sick. Eric had a cold too, so I wasn't alone in my misery, lol!
I'm just letting you know I haven't forgotten , and will be back!
I've missed writing!

Thursday, April 09, 2009

Tomorrow

Can't tell you how excited and yet worried I am!

Ben is doing well, although his cold is getting worse.
Eric and I are both getting sore throats too. Ugh!
Lucky, Katherine is doing ok.
Will we ever be healthy in this house?

So, we leave tomorrow morning. I have lots to do before I go. But done or not, I'll go!
Eric's mom and step dad are taking care of things here for us while we are going.
So, this is just a quick update and I'll post again when I can!

Sunday, April 05, 2009

Counting down

I am so excited. Saturday, I learned to snorkel. My swim teacher did not show up, so Eric gave me some tips and I figured it out. In a week, I will be snorkeling at Molokini crater in Maui, Hawaii.

Keep in mind this is me, "chicken little" where water is concerned. I'm not as scared as I was. I do know that the ocean will be very different from the pool. Still, I loved learning to snorkel. Not worrying about the breathing thing was wonderful! They do supply flotation devices, so my novice efforts at swimming will be safer. :) I had considered doing a "submarine"
tour, but heard less than stellar thing about it, so I took a deep breath and decided to do the real deal.

My in-laws will be taking care of the kids here. Trying to get everything down for the schedule for them and the details of the days. I know they will be just awesome at taking care of the kids. I think we will sure miss each other, though.

Ben is continuing to do amazing things. I am hearing more from him all the time, and today he was nearly ordering his Dad around. He told him he wanted to go shopping with him, needed his socks and shoes and which car to take. How cool is that?

Katherine has taken to kissing. On the mouth. Us, family, and now friends. A lot. Ok, need to help her learn some boundaries on this one now, as it is escalating. Cute, but still....

Now for a busy week getting everything in order here before we leave. Lots of baking to do! It smells very good here!

Today was an odd day. Terrible weather is moving across the state, headed this way. Closing down the interstate. I decided to cancel a meeting that would have brought people from all over the area, and it really hasn't done a lot here yet, maybe sleet. Well. I guess I'd rather make a mistake on the safe side. Still....

Gosh, Hawaii sounds really good right now!

Wednesday, April 01, 2009

Looking At One year

One year ago, I started a blog. It was pure whim. I decided to try it after a Blue Man Group concert because they had video you could post on a blog. I love them, and wanted to share with a few people. What a fun thing to start on April 1st!

I knew two people who blogged and who were very active in their own internet communities. I started talking about my family, our lives and how we got where we are. I had no idea how many wonderful people I would "meet". There is a strong community on the internet for parents of children with Down syndrome. Many inspiring women, and a few amazing men. I am humbled by their experiences and grateful that they are sharing part of their lives with the rest of us. I hope someday to meet some of these people in person, rather than through the computer screen. It will be a good day when I do!

I know I haven't been doing as much on this blog lately, and hope to get back into writing again. It is a nice way to keep in touch with my friends, and I'm finding it is a nice way to keep in touch with myself as well. Something I often neglect, because the needs of my family are enough that I seldom take the time to listen to myself. This blog helped change that a little. I am more focused on what I want to do now and a lot more active in my local Ds community. I enjoy "being there" for people who are in similar circumstances we have gone through. It is hard to do it alone, and if I can help by offering a prayer or a bit of advice, I am thankful I can give that gift.

I am more in touch with my family, now. I hope I have helped explain more about who we are and that we aren't "saints". Just parents who love our kids. You do what needs to be done, because you love them. Not because God chose us as deserving, or that he knew we could handle it. I remember saying to Eric before we realized just how infertile we really were that I didn't think I could go through IVF. Well, we did. Five times. We lost one confirmed pregnancy at 12 weeks. We tried once more a year later. Ben was the amazing result, our miracle. I didn't think we could do IVFs, but we did. I thought we'd need to be "super-parents" to raise our son, but we wanted to try. We are far from "super-parents" but love makes up for a lot of our failings. Some of what we go through may seem to be overwhelming, but it seldom is. It is our life, our normal, and we are happy!

This blog has been a great gift to myself. Thank you for sharing it with me for this year. I hope I can continue to share with you for a while longer.

Friday, March 27, 2009

In awe

I have a new Ben today. One who is more present and interactive. He is hanging out with me, commenting on what I am doing. Helping in his own way. And the day has just begun. When I commented that he needed changed, he told me he wanted to be clean. He took the bowl I was about to mix his meds into and started pretending to mix them up like I do. He is asking for what he wants today. He is sitting next to me, not so engrossed in his own PBS show that he is oblivious. Chattering away. Oh, and waking my computer up when the screen dims. (lol!)
Ben is still fighting his cold, and sounds pretty icky, but still, things are happening for him.
I can't explain how this feels.....other than to say that my heart is just soaring today!