April 30th, 2010

Some of the Carver's CI surgery swelling is down today. Most of the swelling is right behind his ear nearest his neck. (sorry the picture is upside down) Hopefully the swelling will continue to go down and go away forever!

Believe it or not, this looks much better then it did prior to this last surgery.

April 29th, 2010

One of the things that SLP and OT are working with on with Kinnick is "self feeding". We're trying to get her to hold her own cup and drink. We're giving her a little juice in a cup once a day outside of meal time. Today she did a really good job holding the cup herself and taking some drinks.

April 28th, 2010

Carver seen his ENT today. They removed the steri-strips from his CI surgery. Once again, Carver has fluid build up. The Doctor said that it could still be post op swelling, but it seemed to be more swelling then expected. The pathology reports didn't yield any answers/problems. The cultures came back with a slight bit of bacteria. He is putting Carver on an antibiotic for a month. We'll see the doctor again next week. If a seroma remains, he will have to do surgery to remove the implant. He believes that if the same problem occurs again, then Carver is rejecting his implant. There is no explanation as to why he would reject this one and not the other one. He said that if he removes the implant, then he would wait for the site to heal and then re-implant in another spot. So frustrating....

Surgery Day - Repair Right CI Site

Dr. Kryzer opened Carver's Right CI Site today. It appears that all of our issues are related to a little stitch that was put in to secure the Implant. Carver is allergic to Latex and Adhesive. When he had his last eye surgery, we had problems with the eye healing due to irritation from a dissoluble stitch. Now, we found irritation due to a stitch that was used to secure the CI. Dr. Kryzer removed the stitch, cleaned the wound, removed the granulation tissue and closed the wound. He sent tissue samples to pathology and sent tissue samples and fluid samples to be cultured. He wants to make sure there is no infection. We should have results by the end of the week. I really hope this is what was causing the problem and that we can put all of this behind us and start working with both ears.

Carver is already back to his happy little self. He gets to take the bandage off tomorrow.

Kinnick has had junky lungs all week. I can't wait until she's over all of these infections. I'm not sure what caused it this time. We had a play date on Saturday (all kids were healthy), we went to the park in our neighborhood on Sunday to swing, and other then that, everything was the same as any other day. She does gag sometimes when eating, so it's possible that it is related to aspiration. This one was accompanied by a temperature. So, aspiration is a definite possibility. Just no sure answers.

Carver's Growl

I was finally able to capture Carver's growl. It's not the best one that he's done, but it shows that he can copy a growl. I was so excited, I wanted to post it anyway.

April 16th, 2010

Today, Kinnick's OT and PT brought a box of beans. Kinnick slowly allowed us to stand her up in the beans without socks. Then, slowly she allowed us to sit her in the beans while we covered her feet in the beans and dropped beans on her hands and head. Then slowly she touched the beans and tossed some over the side of the box.

Tonight while I was working in the kitchen, I heard a noise. When I looked in the great room, this is what I found.....

I guess she has accepted the bean box! I love this "starting with the feet" approach! It really works!

Carver news....

Carver is still unable to wear his right CI. So, he's only getting to work on hearing with one ear. However, he has started copying us when we growl at him. I'll growl at him and then he'll growl back. He doesn't do it every time, yet. I'm going to keep my flip handy, so I can tape it. It's so cute! This is really pretty big news in my mind. If he can copy a growl, we're onto something!

Tactile Issues

One of Kinnick's goals for this year is to "scribble" on a brailler. Since Kinnick is blind, she will read braille. Instead of writing, she will type on a brailler. This year she is just getting to know her brailler. She'll just type random letters and feel the braille that prints on the paper. So far, so good. She has accepted the brailler. I don't think it will take long to meet this goal. I'm pleasantly surprised. Kinnick has severe tactile issues, so the fact that she accepted the brailler so quickly is great!

Our new OT, SLP, and VI therapists have been working really hard to help Kinnick overcome some of her tactile issues. The tactile issues interfere with just about everything Kinnick does from eating to exploring new things.

Kinnick will gag and throw up if we try to introduce any new foods, smells, textures or tastes. So, we're trying another approach. The spoons in the picture above provide a texture without changing the texture of her food. It doesn't alter the taste or smell, either. The hope is that we can "desensitize" her mouth with the new textures. Hopefully, we can build on this later by adding textured foods. We haven't been able to get Kinnick off pureed foods due to her gagging and puking when trying to feed her textured foods. So far, she is accepting the new spoons. She gags after the first bite or two, but finishes her meal with the spoons.

Kinnick's new VI teacher did some student teaching at a Deaf/Blind school in Colorado. Tactile issues are very common in the Blind and Deaf/Blind world. At this school she learned a proven approach that introduces textures starting at the feet. Then, slowly working your way to the mouth. For some reason, our feet are much more accepting of new textures then our hands or mouths. Once the feet have accepted the texture, it doesn't seem to be as big of deal for the hands to accept the texture, and then once the hands have accepted the texture, it's not as big of a deal for the mouth to accept the texture. The video above shows Kinnick exploring a ball that she would never have touched before.

I'm really excited to see where all of the new approaches take us in the tactile world.

April 12th, 2010

Carver's surgery has been rescheduled again. The Dr's Mom passed away after a long battle with cancer. You just hear so much about cancer anymore. You would think they would be closer to a cure by now. Carver's surgery has been rescheduled for next Wednesday. The Dr. looked at the site today and felt pretty good about waiting. It's actually healing very nicely.

April 8th, 2010

Carver's surgery was moved to next Wednesday. The doctor wants him on a strong antibiotic for a full week before surgery. He looked at the site and felt like it wasn't infected and said that surgery could wait until next week. He also wants to give the site a chance to heal a bit before surgery. He is now thinking that maybe this wasn't/isn't a "seroma". Instead, he is thinking that it is just a bunch of built up fluid in the mastoid. I guess we'll know the full answer when he is able to go inside and look around. Until then, it's going to be fun keeping the site clean with no extra damage.

Kinnick had an EUA today to check the pressure in her eyes. The pressure was 37 in both eyes prior to her surgery in February. The pressures measured 23-25 today, so the surgery took care of the pressure for now.

April 6th, 2010

Carver spends a lot of time rolling around on the floor. He got a really cool Puzzle mat for his birthday. All of the squares are textured and the inside pieces all come apart. It even has a big green button you can push that plays music.

We continue to have problems with Carver's right CI. The CI works great. It's the skin covering the implant. He has had this darn seroma covering the implant since day 1. It's crazy. The seroma was draining good and the skin was starting to heal - until last night. Last night a big piece of skin came off (like a scab). Yellow junk was coming directly from the seroma - Yuk! This is the same junk that has been draining from his ear tube. Today, the color turned to a weird gooey red color. I called the doctor and he changed the antibiotic to something stronger. He said that he expected this to happen. Great. He also scheduled Carver for surgery this Thursday. He's going to have to re-open the site, clean it, and sew it up. I'm so tired of this darn ear. It's been a problem since day 1. I can't believe it's been 5 months and it's still a mess. The other ear is perfect. We've never had a single problem with it. I'm stressed over the surgery on Thursday. I just want this ear to heal so Carver can get the full benefit of his implants. I have no idea what to expect this Thursday. My fear is that he is going to find something more serious wrong. Something is just not right. Even with a puncture to the seroma, the fluid continues to build. This seems really wrong to me.

April 4th, 2010 - Easter Sunday

Kinnick and Carver's 3rd Easter.

You won't find any candy in their baskets. They still don't like candy and wouldn't know how to eat it. So, instead they got talking easter eggs and new Pj's.

April 3rd, 2010

Carver's seroma is finally draining. The tube in his ears is making a huge difference. There's still a bunch of junk draining from his right ear. This is the ear with the seroma. Now that the seroma is draining, the skin is really thinning. When it thins, it gets all crusty like it's healing from an injury. It looks pretty disgusting. In some places, you can push in on the seroma and feel air under the skin. The skin is trying to shrink back down, but it is stretched out and resting above the implant like an air pocket. As it continues to heal, the skin will continue to flake off. It's possible that infection can be introduced if the skin breaks open, so Carver is on 10 days of antibiotics and is not able to wear his CI on this ear until it heals completely. We're told that it could take up to 6 weeks to heal. Sigh.... I will be so happy when we can have both ears on ALL of the time. This ear has been a real pain.

Kinnick is finally able to open both eyes without them watering up. Her eyes have been so sensitive to light since her Glaucoma surgery. It took an entire month to get back to where she was prior to surgery.

The school system therapists have started seeing K&C in the home. We have 1-3 therapist in the home every day. They only have 6 weeks to get to know K&C and to make progress before the school year ends and we have summer break. It doesn't feel like enough time to get a plan in place, but everyone is doing their best to get the ball rolling. Hopefully, we'll get lots of good material to use over the summer.

Carver walking in his Pony

It's a start......

Carver walking backwards in his Pony walker.

April 1st, 2010

Fun with some of our new Birthday toys...

Kinnick got a new sit-n-spin. She's going to need to work on her arm strength in order to spin herself. She loves it when we spin her.

Kinnick and Carver got a "Bilibo". We're hoping they will be able to use this to help gain more of a "protective" instinct when falling. They don't protect themselves when falling. It's crazy, but without vision, they have no idea that they are about to be hurt. They just fall flat on their faces.