November 20th, 2009

Another busy week....

On Monday, Kinnick received her first Synagis shots of the season. She's big enough now (21.4 lbs) that it requires 2 shots - one in each leg. Poor girl. I feel sorry for her, but it's better then getting a bad case of RSV.

On Tuesday, Kinnick had a sonogram done on her Kidneys and a VCUG. These tests were done to see if there is something wrong with her Kidneys/Bladder. You would think that after having 6 kids, I would know how to read a sonogram, but NOPE. I have no idea what I was looking at, so I have no idea what was/wasn't seen on the sonogram. We've gotten to know the Pediatric Radiologist at Wesley, so she was kind enough to tell me that the VCUG did not show any signs of Kidney Reflux. So, it sounds like we'll be able to rule that one out. We did find out that Kinnick can hold her pee for a very long time.... Hopefully this will come in handy with potty training some day.

On Wednesday, Kinnick and Carver both got their H1N1 shots. We didn't have any negative reactions to the shots and are happy we got them.

On Wednesday and Thursday, we had visits from Kat Stremmel. She's such a breath of fresh air. She is following Carver's progress with his CI's as part of a Grant that is interested in the outcomes of Blind/Deaf children with CI's. She is a wealth of knowledge. She is helping us understand what we can do to help Carver achieve the most he can with his CI's. And, boy do we need her help. She met with Carver's entire team of therapists (VI, Hearing, OT, PT, SLP, Nurses, Nurse Case Manager, myself, and Bob (my husband). I think we had a total of around 12 people in the room. Kat helped everyone connect to what it will take to teach Carver to communicate. The therapists helped connect Kat to Carver's physical strengths and weaknesses. Based on 30 years experience, Kat is able to take Carver's strengths and weaknesses and formulate a plan of action to kick Carver's communication into full force. She has so many great ideas that are so easy to include in any of our day to day routines. Things that are very simple, but you just don't think about them. For example, most people know that when the microwave beeps, that someone takes some type of food out of the microwave, right? We know this because we hear the beep and we see someone take the food out of the microwave. How do we connect the microwave with food being heated? With our ears, eyes, and nose. Well, Carver hears all sorts of sounds now. However, he has no idea what any of them mean, and he can't see. So, we have to come up with a way to connect Carver to the sound and meaning of the microwave. We can do something as simple as putting him in his highchair before we heat his food, then when the microwave beeps, we draw attention to the beep, "Carver, did you hear that beep? Your food is ready", then we bring him his food. During meals, we can connect him to meal time by handing him a spoon as soon as he is placed in his highchair, and put on his bib - indicating that he is going to eat. We can ask him if he wants a bite before giving him a bite. He can let us know by opening his mouth or shaking his head "no". He can help wipe his own face. We can hold the cloth in his hand and guide it across his face. He can take his bib off when he is finished eating - indicating that the meal is complete. Then, he can put his own dishes into a tub when finished. All of these are learning opportunities that we've been robbing Carver of by doing these things for him without saying anything. It's so easy to just do things for Carver without thinking. This will be a whole new way of thinking. The way Kat explained it to us is, "Nothing is free". Carver will have to work for everything. If he wants a toy, we will hold it out and ask him if he wants the toy. If he wants the toy, he will either have to say something (make a sound), or reach out and take the toy. When we want the toy back, we will ask Carver to give us the toy, and he should be able to hand it back. When we are ready to put the toys on his tray away, Carver can help throw them into a tub. By putting them in a tub, Carver learns that there is a place that toys go when you are finished with them. They don't just magically disappear and reappear later. Hopefully later he will return to the tub to find the toys. If not, we can bring the tub to him and let him reach into the tub to find a toy to play with. This is just a small sampling of the things that we covered over the course of 2 days with Kat. We met for about 2 1/2 hrs both days. Kat is going to come to our home once or twice a month for a while to help us build all of these things into our daily routines. I can't tell you how excited we are about this. Teaching a Blind/Deaf child communication is not easy. Do you know that there are only about 10,000 Blind/Deaf people. Of the 10,000, only 3% of them are profoundly Blind/Deaf - like Carver. This should give you an idea of how many people have actually worked with children like Carver to help teach them how to communicate. Lucky us, we got one of them - Kat! We have a lot of work ahead of us. Having Kat on board makes me feel a lot better about how we get started on this long road.