Thursday, September 30, 2010
Well, we're moving right along with the potty training. Today, Kinnick pooped in her potty. This was no small poop. In fact, it stunk so bad, we kept telling her she could get off the potty - we thought for sure she had to be done. She just said, "no, no" and then signed "more". She only went pee in her pants one time today. I'm sure it's because nurse Marci took her to the potty every hour. She's still not "telling" us that she needs to go potty, but she sure seems to be figuring this potty thing out. It would be so nice to get rid of 1/2 our diaper and wipes expense. I'm crossing my fingers that she figures this out and that she has the muscle tone to know when she has to potty and enough muscle tone to be able to "hold it" when she needs to go potty.
Wednesday, September 29, 2010
Things are going pretty good for Kinnick and Carver. They both have colds, but have handled them much better then they have in the past. Carver is having some desats at night (without oxygen on), but he's been recovering on his own. Part of his problem is that he is a nose breather and when his nose is stuffy, he doesn't know to breath with his mouth. Kinnick's lungs are junky right now, but she's doing pretty good on her sats. We haven't had to increase her oxygen at night, nor have we had to put oxygen on her during the day. Her sats have dropped some at night, but typically it's when her cannula has come out of her nose. She's gagging on drainage and vomiting - which stinks. Her lungs are still too weak to help her clear the junk out of her throat and lungs. She makes that noise that makes you want to clear your own throat.
We have some great therapists this year from the school. The SLP has been doing some great things with the kids. She's "cooking" with Kinnick. They've made jello and pudding. She is really working to get words out of Kinnick, and we have actually noticed an increase in word attempts. I think it's just a matter of time before she explodes with words. The SLP has said that she wants to spend at least 50% of her time on language development (this makes me really happy). She's working on tactile things like finger painting, and they're going to start painting with food. She's working with Carver to ask for "more" by pressing a button.
The TOD has requested lots of switches, devices, and other equipment from the Deaf/Blind funding to help Carver learn to communicate. She works hard with Carver 3-4 times a week to teach him to communicate. She has gotten him to roll with purpose and has taught him a way to ask for "more" by scratching his tray. The SLP wants to get this changed to pushing a button instead. While this would be ideal, Carver still likes the switch/button way too much - he still wants to press the button over and over again to hear what it says or does. So, hopefully between the 2 of them, they can figure out a way to use the switch. She's also working on discrimination between two objects. For example, being able to make a choice between a toy and a shoe, or being able to find a spoon when you show him a spoon and a drumstick, then ask him to find the spoon. Kat continues to see Carver once or twice a month, and she has scheduled an in-service day at the school to coach all of Carver's therapists.
Kinnick's O&M teacher is still working hard with Kinnick to learn the meaning behind the mobility device. Kinnick is following sounds - which is important to a blind person. Sounds tell you a lot when you can't see. For example, you can tell by sound which direction a vehicle is coming from.
PT is working really hard to help Carver sit with less support and to hold his own head up. He's doing better, but still likes to arch backwards, stack (resting his head on his shoulders), and rest his head on anything he finds that he can rest his head on. She is working with Kinnick to ride a tricycle. Kinnick doesn't have the muscle strength to push the pedals. She's working with Kinnick to walk up and down stairs on her feet, and they're working on bouncing on a ball.
VI is using the light box with Kinnick to work on shapes, colors, sorting and stacking objects. She's also working with Kinnick on the brailler. They just type and feel the words. She's using the light box with Carver to get Carver to roll with purpose toward the light box. She's also trying different patterns and objects on the light box to get Carver to focus. There are certain patterns that seem to bother him - like colored dots. However, he seems to really like checkered patterns. She's helping Carver feel the braille in his books as she reads the books to him. She's also working on tactile issues like trying to get the kids to feel things like velcro, a soft puppet, play dough and bubble wrap. She tries to get them to pop the bubble wrap and squeeze the play dough. This is supposed to help strengthen the hands.
We have a new OT. She's been working a lot with PT and SLP.
Potty training is going pretty good. Kinnick goes pee in the potty several times a day. She's still going pee in her diaper, so we have a lot more work ahead of us. Luckily, she seems to like her potty chair.
I've started taking a sign language class on Monday nights. So far, I've learned my ABC's and some pronouns. I'm hoping to use some of the sign language to communicate with Kinnick and Carver. Obviously, they can't see me sign, but I want to teach them to sign to me. They can hear, so they don't need to see me sign.
Tuesday, September 28, 2010
We applied for Deaf/Blind funding again this year, and Carver qualified. We received one of the items today. I posted a picture below. It's really pretty cool. If he pulls the ball on a string, a fan blows on him. If he presses the blue button, it vibrates. If he presses the yellow button, the radio plays.
I'm looking forward to the other items that were ordered for him.
Sunday, September 26, 2010
We just started (again) trying to potty train Kinnick. I really think she is ready this time. She wakes up dry most mornings, and she taps on her bottom when she has pooped and needs her diaper changed. The main bathroom upstairs is always so cold and it's small. So, for now, we moved her potty chair out next to the changing table. When we get her up in the morning, we take her clothes off and sit her on the potty. The first couple of mornings, there was a small drop of urine in the potty after she got up. However, the last two days, I left her sitting for a little while and she covered the bottom of the potty with urine. Then, she reached her hand into the potty and started playing with the urine. I'm not sure what I expected. She can't see, so she normally wants to touch everything. I quickly told her how proud I was of her, and told her that we shouldn't touch the pee-pee. Then I moved her to the changing table and cleaned her up. Before getting off the changing table, I told her again how proud I was of her. She started signing "more". She wanted to sit on the potty again. Thoughout the day, she grabs a book and sits on her potty. Now, we just need to figure out a schedule for sitting on the potty. Hopefully, we can get her potty trained this time. I do worry about her hypotonia and whether she will have the muscle tone to "hold it" and to "know" when she has to go potty - before it happens. The fact that she wakes up dry is a good sign that she is capable of "holding it".
Kinnick enjoying a book while sitting on her potty.
Today, we celebrated Hayden's 5th birthday, Kirsten's 21st birthday, Harrison's (Harry) 13th birthday, and Bob's 35th birthday.
A picture of the birthday boys and girl.
Hayden and his loot! Grandpa Woolley also sent Toy Story bedding, and Hayden has agreed to start sleeping in his own room. We'll see how that goes.
Kirsten and her new Ugg boots - it gets cold walking around campus.
Harry and his new Ipod touch.
We had a great time.
Friday, September 24, 2010
I received a call from Carver's Audiologist this week asking me if I would like to upgrade Carver's AB body worn CI processor to the AB Kinder Clip processor. She said that it was a free upgrade - I just had to exchange the AB body worn processor for the AB Kinder Clip processor. I really didn't know anything about the Kinder Clip. Since you can't just get a new processor anytime you want one, I really wasn't looking to see what was available.
I quickly sent an email off to the CICIRCLE yahoo group that I belong to. I asked the group (CI users or parents of a CI user from all over the world) if any of them had tried the AB Kinder Clip, and if so, what did they think of it. I got mixed answers. Some really didn't like it at all and didn't think it would work well for Carver. Others loved it, said it had better sound quality, and they thought it would be perfect for Carver. Since I got mixed answers, I asked Carver's Audiologist if we could try the Kinder Clip for a couple of weeks. This would give us a chance to "try it before we buy it".
The picture above shows the difference in the AB body worn and the AB Kinder Clip. One of the biggest differences is size. The AB body worn is on the left. The AB Kinder Clip is on the right. In addition to the size, the AB Kinder Clip weighs a fraction of the AB body worn. We haven't really had any problems with the AB body worn. The cable is long enough to run down the back of Carver's shirt - allowing us to tuck the processor in his cargo short's pocket. The processor takes up the entire pocket. When both CI's are in use, the processors get so heavy that sometimes his shorts fall off. The AB Kinder Clip has a very short cable. However, there is a plastic clip attached that allows you to attach the processor to the collar of his shirt.
The above picture shows the AB Kinder Clip attached to Carver's collar. At first, I was concerned that the clip would easily fall off, or it would dig into Carver's neck or shoulder when he rolled around on the floor. I put it on Carver tonight for about 4 hours. It didn't fall off a single time, and it doesn't appear to bother him when he is rolling around. I also think that he was hearing better with it. The AB body worn has the sound piece directly on the magnet which attaches to his head. Since he wears a hat to hold it in place, we lose some of the sound due to the hat. The AB Kinder Clip has the sound piece on the processor, so it will always be exposed - not covered up.
The above is just another picture that shows the entire device. In this picture, I attached the Kinder Clip to the back of Carver's shirt. The picture makes the processor look huge. However, it's no bigger then his ear.
There are a few cons that I noticed so far:
1.) We will not receive a "beep" if the magnet comes off his head. Instead, we will have to watch for a red light.
2.) We will not receive a "beep" when the battery is low or dead. Instead, we will have to watch for an orange light (battery low) or no light at all (battery dead).
3.) The battery life is shorter then the AB body worn. The AB Kinder Clip will only last about 8-9 hours. The AB body worn lasted 12+ hours.
We're going to try the new AB Kinder Clip for a couple of weeks before making our decision to upgrade or not. So far, I'm loving it!
Wednesday, September 22, 2010
Before we left for Michigan, we bought a fun little piano for the car. Carver loves to play with the piano. He works until he gets it backwards because he likes to look at the lights that light up when you hit the keys....
He is such a smart little guy. It's just so hard to unlock the magic "thing" that makes things click for him. He has really come a long way since Kat (with the Deaf/Blind project) came on board to help us. One of her original goals was for him to learn cause and effect. I think he's figured this one out. It seems so small, but teaching a Deaf/Blind child is beyond anything one could ever imagine. Kat truly has a gift, and we are so blessed to be benefiting from that gift.
This past weekend, it was nice out, so I took Kinnick outside to play with her sand-n-water table. Who do you think won this water war?!?!?
Tuesday, September 21, 2010
Happy Birthday Big Brother, Hayden!
Hayden turned 5 years old today. Big sister, Kirsten will turn 21 years old on Sunday (Sept 26th). Big brother, Harrison will turn 13 years old next Saturday (Oct 2nd). Bob (daddy) will turn (?) in a couple of weeks (Oct 14th). We plan to celebrate all of the birthdays this Sunday.
I can't believe how time has flown. My kids are getting so big, so fast.
Thursday, September 16, 2010
Kinnick is very mobile. However, she can only see lights and shadows, so she runs into everything. She does really good in our home except when someone leaves something out of place, then she falls over it. Her O&M therapist (Orientation & Mobility) is teaching Kinnick to use a pre-cane (early mobility device) to help Kinnick get around without running into things, falling off curbs, etc. We started off (quite some time ago) having Kinnick push a "corn popper". She loved the popping noise, but didn't really want to touch it. Now that Kinnick's O&M has started working with the early mobility device, Kinnick has found a real interest in her "corn popper", and wants to push it all over the house.
Kinnick isn't allowed to use the early mobility device in the house. It's intended for unknown places.
Kinnick and her new "Early Mobility Device".
Wednesday, September 15, 2010
We're getting ready for Halloween. I love hand making costumes, so we have to start early. This year, Kinnick and Carver are going to be Thing 1 and Thing 2 from Dr. Seuss - one of Kinnick's favorites! We have the outfits complete. Now, I just need to find "Crazy Blue Hair". We've looked at several wigs, I just haven't chosen the one that I want, yet.
Thursday, September 2, 2010
Carver got his new Cascade DAFO's today. I'm so happy to have these. The AFO's that he had were just crappy, and caused tightness in his ankles. The AFO's had an articulator on them and the design just didn't work with Carver's tone. Carver was able to point his toes and pull his complete foot right out of the AFO. If he didn't get his foot pulled out, then his heal wasn't in the proper position. This just caused the AFO to hold his foot in a bad position. The Cascade DAFO's consistently hold his feet in the proper position. He has NEVER wiggled out of his DAFO's. Now, I'm just waiting for the beating I'm going to get when his orthopedic doctor finds out we got Cascade DAFO's and not AFO's. Oh well, it's worth it. I would rather find a different doctor then put my kid in the crappy AFO's again.
Just perfect! Love them.
Wednesday, September 1, 2010
We received the results of Carver's latest Sleep study. The study didn't show any "sleep apnea". It shows some desats, but nothing major. We were given the green light to "try" him off oxygen at night. He will still be monitored while he sleeps, but he won't be required to wear his oxygen unless he is having problems breathing - signs of sleep apnea or desats. We started Monday night. He did really good Monday night. Last night he had 4 desats at 87-88. He was able to recover from all of them on his own. Meaning, that I didn't have to do anything to stimulate him. We are supposed to monitor him till Friday morning and then report the results to his pulmanologist. We'll see how the rest of the week goes. It would sure be nice to get rid of the huge O2 tanks in the house! Not to mention all of the tanks when we are driving out of town. I feel like we're driving a huge O2 missile.