Kinnick Kay and Carver Lee

Carver news.....

2012-02-22T20:25:00.007-06:00

I had the opportunity to observe Carver in his classroom at school after spending 4 hrs in IEP meetings :o). The things I got to see were just amazing. We are very fortunate to have a team that truly cares about Carver, and who are doing everything possible to help Carver meet and exceed his goals.

Carver is "included" with the rest of the class as much as possible when it makes "sense". In the picture above, Carver is being included in circle time while also spending time in his stander. He is positioned as straight up as possible in his stander. This helps with weight bearing and head control. The class is enjoying music during circle time. Carver participates by rubbing 2 sticks together to make sound while other kids sing or listen to the music. This is an activity that Carver can participate in because it makes "sense". Let me explain what makes "sense". Carver is working on understanding what he hears. It is very difficult for him to hear in a noisy environment. If he can't hear, then he can't learn, right? So, during circle time, the music is playing, and he is participating in the noise by rubbing sticks together. There are other times when it just doesn't make "sense" for Carver to participate with the group. For example, story time. The classroom is very loud - children crying, screaming, talking, etc. Very typical of a special needs pre-school. In these cases, Carver is pulled aside to have story time. This way, he can hear what is being read to him, and participate.

Since Carver is working on understanding what he hears, anytime he is asked to participate in an activity, they present the activity or object in a partial box (see above picture). He is told what they are going to be doing, and in this case, he is asked to get his book. He was told that they were going to read a book. Carver grabs the book from the box when he is asked to get his book. You can see Carver grabbing his book in the above picture. No help is needed. This was amazing to watch. He showed off this ability numerous times during my visit with verbal cues only.

Carver has a very routine based schedule. His schedule is different M-F, but he does the same thing every Monday, and every Tuesday, etc. This helps with anticipation. It also helps him to connect to these tasks or things. A Deaf/Blind person has a very hard time connecting to things. Therefore, it can take multiple times of doing the same things before they connect. In the picture above, Carver is presented with a tub of water for water play. The water is always in the same tub. So, when he is told that they are going to have water play, and he sees the tub coming, he knows what to expect. He loves water play. He has to wear a hat/cap to keep water off his Cochlear Implant processors.

Carver gets to decide when he is finished with something. When he is finished with something, he pushes the item away from himself. All finished requests are accepted by the Therapist. This helps to teach Carver that he can make choices.

When Carver is finished with water play, he is asked to remove his hat. With a verbal cue only (no assistance), Carver removes his hat. Clearly he hears the request and understands the request. So exciting!! This again requires a quiet location, so Carver is able to hear exactly what the therapist is saying.

Carver's Therapists are working really hard on independent sitting. In the above picture, Carver is pushing himself up from the floor. While laying on the floor, the Therapist crosses Carver's legs (Indian style), then he uses his left arm/hand to push himself up ino a sitting position. The Therapist helps by holding his hips. The goal is for Carver to push himself into a sitting position with no help from the Therapist.

The above picture shows Carver after he pushed himself up into a sitting position.

Carver is also working on sitting without support for longer periods of time. In the above picture, the Therapists are having Carver push a ball back-n-forth between himself and the therapist. They tell him to push the ball to the Therapist, and he does. The Therapist tells him when she is pushing the ball back. The ball beeps, so he hears the ball coming. They do this for more than one reason. The first reason is to work on independent sitting. The second reason is to work on motor skills and listening skills. The third reason is to work on anticipation. Always working on something and they have a great way of making it fun.

These are just a few things that I observed over an hour. He spends 2 1/2 hours at school per day.

Just Amazing....

Kinnick news...

2012-02-22T20:21:00.002-06:00

Guess who is nearly potty trained?!?! Kinnick hasn't had an accident all week - including at bedtime. She is wearing panties all day. We have been putting a pull-up on at night, but she is waking up dry. I told her that if she could wake up dry 14 days in a row, then she can wear panties to bed. So far, so good!

February 14th, 2012

2012-02-22T20:12:00.004-06:00

This is the pocket the school created for Carver's Valentines. They always cater to Carver's differences. Every piece on the pocket has a different texture, so he can feel (see) his Valentine pocket. They completed it with his name in Braille (on the pink heart). We have the best teachers, therapists, and 1:1. I almost feel guilty.

Exciting things happening....

2012-01-18T20:22:00.003-06:00

We've been working on self feeding forever. Here is a video of Kinnick taking some bites on her own. She's not eating a whole meal or anything, but this is definitely a start!

Here are a couple of pictures where Kinnick is licking a lollipop!

Carver repeats Da Da Da Da

2012-01-14T22:01:00.002-06:00

I thought I would share a video of Carver repeating Da Da Da Da.....

He gets so excited about his accomplishments. He's doing so good with 2 active ears.

Carver can army crawl!!!!

2012-01-14T16:29:00.004-06:00

This is just amazing. In a few short months of work, Carver's new PT has taught him to army crawl! I'm sure she had help from the other therapists and of course Carver's fabulous 1:1. I'm so thrilled with this achievement. We've wanted Carver to crawl for a very long time. Now, he's army crawling. I'm sure this is just the beginning.

Carver, we are so proud of you!!

I couldn't have said it better myself....

2012-01-13T20:15:00.003-06:00

So perfectly written by Candace Barnes - A Cerebral Palsy Mom

Parents of special needs kids get so fed up with having to deal with people who may not be uncaring but simply don't take the extra moment to understand. We are connected to our children in ways that other parents cannot understand. We know without anything being said just what is needed at any given moment. We learn to anticipate what will happen next. We become educated in the legal, medical, and government arenas more than some people who have degrees in those fields. We learn to fight the fight and go into battle with a smile on our faces because we have to not because we want to. We learned the hard way just what must be sacrificed in order to get the care and attention our children need. We learned to give more of ourselves to that child than we would ever conceive of giving to another human being. We not only live it, eat it, sleep it, we also dream it. Our lives are consumed by the care of our children. Our lives don't exist except for the care of our children. Everything we do revolves around what may be needed next for that child. We have been humbled, humiliated, felt guilty, made ashamed, brought to the point of begging at times, made angry, made determined, driven to the point of desperation, all for the sake of our children. We have sat in hospitals for days, weeks, months praying that our child makes it one more day, praying that our child lives long enough to know how much we love them, stood the onslaught of surgeries that could be life threatening, procedures that could make the situation worse, been through treatments that would make a grown man cringe, all in an attempt to make our children better. We have died a little inside every time our child cries from the pain of all these things. We have dispensed more medication than a pharmacy could hold. We have tried every crazy experiment, every suggestion made, every piece of equipment, every new medication, every strange idea on the hope that it might work. We have dealt with quacks, conmen, inexperienced people, uncaring individuals, rudeness, and cruelty toward our children. We have lost everything, sold everything, traded everything in the pursuit of help for our children. We have given up friendships, family, relationships, and marriages all for our children. We have other children that have given up parts of their lives for this child. Children who never complain while they do without so this child may have something needed. We have learned to be realistic people. We know how bad the situation can get and that we may lose our children before their time yet we hope for that one cure that will make it all go away and give us our lives back. We hope that we can help another parent or people in the future by sharing our ideas, thoughts, angst, miseries, hopes and dreams. We have been made strong by the honor of being in the presence of a child with the courage to face more needles, more doctors, more surgeries, more treatments and procedures with a smile on their face. We have stood strong when our children have lost the battle and gone before their time. We say we are okay all the time when inside we are struggling to make it one more day. We know the potential our children have, we see their abilities as well as their limitations when they go through the procedures, treatments, surgeries, and struggle to accomplish even the smallest tasks. We are made strong by seeing the courage, determination and – most of – the hope in that child’s face every day. We do this EVERY SINGLE DAY of our lives. So PLEASE do not treat us as if we do not know what we are talking about. We have learned to face down worse tragedies, more complicated messes, and deal with more situations than you can imagine. We have been bent, sometimes broken, medicated, treated, depressed, angry, sad, and most of all a little fearful of the future. We have slayed more dragons, conquered more worlds, invented more items, discovered more truths, and all for a smile when that child is happy. We are diplomats, advocates, fighters, unlicensed doctors, therapists, surgeons, nurses. We are a formidable force to be dealt with when it comes to our children. We have neglected our spouses, other children, housework, jobs, friends, family, society, and our own health because we have been busy in the pursuit of a better life for our children. So do not think that we are incompetent – instead remember that we are soldiers in the battle for a better life. We are more focused on which battles to pursue. Not for ourselves but for a person who cannot do it for themselves. So listen to us when we speak because we know what we are talking about. Don’t talk down to us, respect the fact that we are caregivers of the most special people in the world. We have an honor you will hopefully never receive, we earned it the hardest way possible, and we carry that badge of honor with us in every single thing we do, every word we speak, and every action we take.

December 28th, 2011

2011-12-29T13:25:00.002-06:00

Kinnick and Carver have spent the majority of the holiday sick, sick, sick. Carver started it with a bad sinus infection and a cough that wouldn't stop. We got him an antibiotic and that seems to have helped. He's still not 100%, but he's well on his way. Kinnick picked up crappy lungs and an ear infection. We got her an antibiotic, and that seemed to help her get better. Now, she's sick again (while still on the antibiotic). She's vomiting, has a fever, and requiring lots of oxygen. Anytime she gets a bug, her lungs take a hit right away.

Santa came to the house again this year to visit the kids.

Carver wasn't feeling well, but still sat on Santa's lap.

Santa gave Carver a cool Football with bells inside. He also got a full size Basketball with bells inside of it. He loves them! He's such a little stud. He chases both of them across the room.

Kinnick was happy to see Santa and now asks when Santa is coming back to bring her more presents to open. He brought her a cozy coup gas pump that she had been asking for.

This is a picture of Kinnick enjoying her new Rody pony. She loves to bounce.

We spent Christmas Eve with family - Aunt Tonya, Uncle Bill, Cousins Miles and Tyler and all of the kids. We had a good time decorating cookies, making our own pizza, and playing games.

Miles and Tyler

Kirsten, Harry, and Tyler snacking.

Gregory, Kinnick, Gage, and Hayden decorating cookies.

Make your own pizzas was fun.

It's starting to look a lot like Christmas....

2011-12-04T22:05:00.003-06:00

Our family room is full of special needs equipment and toys. So, we've had to put our Christmas tree in the basement family room for the past 4 years. We spend most of our time in the upstairs family room, so this year I moved things around to make room for the Christmas tree. I wanted Kinnick and Carver to enjoy the tree and the lights.

Kinnick loves the lights. She's not quite sure what to think of a tree in the family room.

She wanted to touch all of the lights.

I'm hoping that she won't try to pull the lights off the tree. So far, so good.

Big Brother Hayden enjoyed looking at the nativity scene. He wanted to tell me all about Jesus' Birthday and everyone that came to celebrate his birthday.

Big brother Hayden helped decorate the tree.

December 1st, 2011 - Right Ear Activation Day!!

2011-12-04T21:44:00.004-06:00

Finally!!! Carver's Right ear is activated. He is bilateral once again! Carver was ready to be re-implanted a year ago when Advanced Bionics and the FDA pulled the Harmony CI's off the shelf. It took an entire year for the Harmony CI's to be released by Advanced Bionics and the FDA.

The above picture was taken during activation. Crying is a very good indication that the activation was a success. No response would be bad. We know that the nerve(s) were stimulated. He got the best response from the lower frequencies, which would include speech sounds. Carver will require a lot of therapy to get this implant up to speed with his left CI. Lucky for him, he has an excellent group of people eager to work with him.

Carver was completely exhausted after school. I found him crashed in the corner around 4:30pm. His poor brain was on overload trying to figure out his new ear.

November 5th, 2011

2011-11-05T20:53:00.003-05:00

Carver had another fabulous day. He acts like his ear is still sore - I'm sure it is. There is still blood draining from the ear. It's not much, but it is definitely still draining - bright red. The small pink raised bump is still on his forehead. I sure wish I knew what it was.

Big brother, Hayden got a new pair of Batman PJ's. They were too long, so I cut the bottom of them. Carver got the excess fabric that I cut from the bottom of Hayden's PJ's....

November 4th, 2011

2011-11-05T20:45:00.003-05:00

Carver had a great day. No fever and he is acting like he never even had surgery. He still has blood draining from his ear. It's not too bad, but we're still keeping a cotton ball in his ear to catch it so it doesn't get all over the place.

He has had a strange pink spot on his forehead since he came from the hospital. I'm not sure what it is. It' a small raised bump about the size of a nickle. I've put lotions and hydrocortizone on it, but it doesn't seem to want to go away. I'm wondering if it is an allergic reaction to the tie that was used on his original gauze wrap. His skin is so sensitive. His incision looks really good. He has little to no swelling. He slept really good last night - thank God. We really needed sleep after the first night.

Halloween 2011

2011-11-04T19:03:00.002-05:00

This year, Kinnick and Carver were little black Lab puppies for Halloween. Kinnick talked and talked about how she was going to "trick or treat", but then was too afraid to go to the doors. Maybe she'll be more interested next year.

Carver's pre-school had a parade to show off all of the kid's costumes. Carver got to ride in the wagon. Our neighbor's son attends the same school, so she snapped a picture of Carver and sent it to me. He was so stinkin cute!

November 3rd, 2011 - Day 1 after Surgery

2011-11-03T20:19:00.004-05:00

Carver had a good day. He only required one dose of regular Tylenol. He played and ate today.

Around 5:00pm, Carver started running a low grade 100.4 fever. He also started gagging again this evening. We gave him a suppository to help his digestive track move. This seemed to help. The gagging went away and he had a couple of small stools.

We took the bandages off today. The incision is smaller this time, but thicker. Everything looks good. I don't even see much swelling this time. The bleeding continues from the ear. He has soaked a couple of cotton balls today. We've been taping cotton balls in his ear to catch any blood.

Carver's incision....

November 2nd, 2011 - Right Cochlear Implant

2011-11-03T19:57:00.006-05:00

The day has FINALLY come - after waiting nearly an entire year. Carver had surgery this morning to re-implant his right cochlear implant. They started the surgery at 9:10am and didn't finish until almost noon. He was really sleepy and therefore was requiring lots of oxygen. He's never been this sleepy after a surgery. He was still sleeping at 3:30pm, but they went ahead and released us. They knew we had oxygen and monitors at home.

Once we got home, Carver continued to sleep until 6:00pm. We finally put his left cochlear implant on, and he woke up ready to play. Blood soaked through the white gauze bandage. I was concerned, so I called the Doctor around 9:30pm. The Doctor wasn't concerned. He said this is common with revisions. I guess they bleed more. Carver got tired quickly, so we put him to bed.

Carver slept until around 1:00am and then started gagging and desatting. I had to vent his stomach. His digestive track was still sleepy and his tummy was filling with gas. I ended up having to vent his stomach a couple of times an hour the rest of the night. Not such a fun night. I gave him two doses of Tylenol with codeine throughout the night.

Carver anxiously waiting for surgery.

Carver shortly after surgery. Ready to go home.

Carver's First School Picture 10/2011

2011-10-20T19:23:00.002-05:00

September 25th, 2011

2011-09-25T20:04:00.002-05:00

Kinnick managed to have her eye surgery despite crappy lungs, an impressive stridor, and low oxygen saturations. I was sure they were going to cancel her surgery on the spot. We had a pre-op appointment the day before and she was doing fabulous. No signs of any lung issues. She was even satting 100%. By the next day she was satting upper 80's and lower 90's, and had a terrible stridor. Her lungs crap out with no advance notice. I think the only thing that saved us was that they expected the worse based on her medical history. I came prepared with the oximeter and plenty of oxygen. I was determined to get the surgery and get home. I didn't meet the doctor until the day of surgery, but immediately loved him. He had read Kinnick's entire file (including all eye surgery post-op reports) and knew what he was up against. He observed Kinnick while visiting with me and noted how often she rubs her eyes. Based on the previous surgeries and how often she rubs her eyes, he opted for the Cyclophotocoagulation laser surgery. This is usually done to treat people with severe glaucoma that cannot be controlled by medicines or other minor surgeries. The eye doctor aims the laser at the white part of the eye (sclera). The laser goes through the sclera to the ciliary body. The ciliary body is the part of the eye that makes the eye fluid. The laser damages parts of the ciliary body so that it will make less eye fluid. This is much less invasive than the valve that he was going to place in her eye to drain the excess fluid. The surgery took over an hour, but when he came out to talk to us, he said that he felt like it was the right decision and he was very happy with the surgery. Now we wait to see if it made a difference. We'll know more in a month when we have her eye pressure checked again.

This was our first visit to Children's Mercy Hospital in KC, MO. I was very impressed with the staff and their level of care. This was the first recovery that we've been to where Kinnick wasn't screaming when we got to the room. She was sitting quietly on a nurse's lap. I could hardly believe she was my child. She's usually really mad at me for letting them take her, and the drugs make her crazy. Normally, she's pulling her IV out and kicking. She didn't even touch the IV or the eye patch. In fact, she didn't touch the eye patch at all. We took it off at the doctor's office the next morning. The doctor dismissed Kinnick in our care shortly after surgery. This made me extremely happy. I was told that she would likely have to spend the night.

We're home and everyone is doing fine. Thanks for all of your prayers!

Toy Gym made out of PVC Pipe - Very Cool

2011-09-18T20:03:00.003-05:00

I belong to a micro-preemie group on yahoo.groups. A lady in the group posted a cool Toy Gym made out of PVC Pipe. It was such a cool idea, I ran out today and purchased all of the pieces and made one for Carver - Iowa Hawkeye style...

You can check this out on her blog at http://adaptedworld.wordpress.com/pvc-toy-bargym-instructions/ She has a lot of really cool ideas on her blog.

Overdue update...

2011-09-14T18:59:00.003-05:00

Yippie!!!

Sonova Announces immediate market re-entry - FDA Approval for Advanced Bionics!

Here's the link.... http://www.sonova.com/en/investors/news/Pages/fdaapproval20110913.aspx

This means that Carver can finally get his right ear implanted again!!! We will likely have this done next month. We need to get through Kinnick's eye surgery first.

Kinnick is scheduled for Glaucoma surgery 9/22/2011. The pressure in her right eye continues to be high - in the lower 30's. They will be putting a valve in the eye to drain the excess fluid. Our doctor in Michigan only works on retina related issues. This is another specialty - yippie, we needed another one, right? Luckily, we found a very qualified Glaucoma doctor about 3 1/2 hours from our home. So, we won't have to take the long 16 hour trip for this surgery. This doctor is located in Kansas City. My best friend lives in Kansas City, so I'll get to see her while I'm there, too.

Carver got another round of Botox on Monday. It doesn't seem to make a huge difference, but every little bit helps. He recently had hip x-rays done and they didn't show any signs of trouble, so we're doing something right.

Carver is now attending pre-school 5 days a week. He seems to really enjoy going and likes all of his teachers. He's in a very small classroom - only 3 kiddos. There are more adults in the room then kids. This is giving him tons of attention.

Kinnick is still homebound. She continues to battle bad lungs. She spends about 50% of her time back on oxygen. It's crazy. Someone with a cold just has to walk by and she needs oxygen. Despite the fact that Kinnick is homebound for school, she is doing great and continues to learn. She's very interested in her A,B,C's and the sounds that each letter makes. She can say her A,B,C's and many of the sounds. She's counting to 10 in English and Spanish (little smarty pants). She's also doing a lot more pretend play. She's learning to walk around outside and listens for environment sounds to help tell her what's going on and where she is at in space.

Kinnick counting to 10 in Spanish

2011-09-10T16:53:00.002-05:00

Kinnick learned to count to 10 in Spanish all by herself! We have several toys that have multiple languages. One afternoon, we asked Kinnick to count to 10. Much to our surprise she counted to 10 in Spanish! We asked her to do it again and here it is....

Big Boy

2011-07-13T19:09:00.002-05:00

I thought I would share a picture of Carver sitting in his chair like a big boy. It's a lot of work for Carver to sit without help in a chair. He's doing much better and able to sit for longer periods of time.

Kinnick on the other hand has no problem sitting - In fact, she can sit about anywhere...

Bells Bells Bells

2011-07-11T21:42:00.002-05:00

We've been taking it easy this summer. Carver just got over a nasty cold and Kinnick is still going back-n-forth with her cold and crappy lungs. Off and on with the Oxygen. She's down for the count in minutes. One minute she's playing and having a great time, the next she is crashed on the sofa on 1 1/2 - 2 lt of oxygen barely maintaining 90% oxygen saturation.

Kinnick's eye pressure is up, so she has to get it checked frequently. We go in tomorrow to see where her pressure is at. Hopefully it's come down some, but I'm not counting on it. I know she's going to need another nasty glaucoma surgery.

Carver is still doing really good with his one ear. Here is a video of him enjoying his bells...

Kinnick says, "I love you!"

2011-07-01T20:51:00.002-05:00

Kinnick is getting better and better with her words. She's still really raspy and still lacks the breath support to create a smooth sentence.

Below is a video of Hayden and Kinnick going back-n-forth saying, "I love you".

A funny story:

Today, the oxygen delivery guy came to drop off oxygen and supplies. He commented on how hot it was outside. He went outside to fill the liquid oxygen tank. While he was outside, Kinnick said, "Guy-Hot-Outside". She kept saying this off and on. Then, she got it mixed up and started saying, "Hot-Guy-Outside". My nurse got a pretty good laugh out of it.

June 15th, 2011

2011-06-15T21:53:00.003-05:00

I've been a bad blogger, lately. It's not that I don't want to blog, I've just been so busy.

My 17 year old has been working on getting a drivers license. He passed driver's education and he has finally gotten all of his driving hours finished. We're hoping to pick his car up next week. It's nothing fancy - a 1999 Toyota Camry. Insurance rates for boys are absolutely crazy! Make sure your boys get good grades and maintain a good driving record.

Kirsten completed her 1st year in the Dental Hygiene school. She received a C- in a class, therefore she was excused from the program! They allowed her to re-apply to the program. She was accepted again - after they created a 37th spot for her. They only accept 36 students a year. However, they are making her repeat her entire Junior year! Crazy! A very expensive lesson learned - not to mention time spent. She's a very good student with a high GPA. So hard to believe that one class can cause you to be excused from the program. If she was able to find the class and take it over the summer, they would have accepted it. However, we searched all of the US and couldn't find the class offered this summer. It's a specialized class that is typically only offered as part of a Dental Hygiene program. Most Dental Hygiene programs are very competitive and you have to be in the program at the specific school in order to take the classes. The classes are offered in blocks and only those accepted in the school's program are allowed to take them.

Hayden is playing T-ball this summer and Harrison is playing basketball. Everyone is keeping busy.

Kinnick is doing better every day with her words. She'll repeat up to 5 word sentences. She is using up to 3 word sentences appropriately. Gotta love the summer- no lung infections.

Carver is sitting better and holding his head up better. He isn't able to sit without assistance, but he's sitting for longer periods of time with some support. He's rolling more and more with purpose. He'll even roll to us and scratch our leg for attention. He's rolling around the kitchen, great room, hallways, and has even been found in the bathroom. I think he's just exploring for new things to do or in search of new things to play with. He's using his vision more and more. It's amazing to think that a year ago he couldn't track at all with his eyes and now, he's tracking. If he's sitting on your lap and you talk, he'll turn his head around to see who is holding him and talking. He's also learned to turn his music cube on with his middle finger. Another thing that he does (I swear he does this to annoy me) is kick his pants off when I'm changing his diaper. He kicks and shakes his legs as hard as he can until he gets his pants completely off. I know he's doing it on purpose because as soon as he gets his pants off, he stops kicking and shaking his legs. He laughs the entire time.

Kinnick counting to 10

2011-06-01T20:53:00.000-05:00

Kinnick can count to 10!

Excellence Resort and Spa - Riviera Maya, Mexico

2011-05-28T16:59:00.007-05:00

Bob and I celebrated our 7th wedding anniversary on 3/24. We were going to take a trip to Mexico, but the last time that we went to Mexico for our anniversary, it was too cold. So, we put the trip off until May. Which happens to be my Birthday (5/19). The weather was great and we had the best time. We booked a week vacation at an Adults only Report - Excellence Resort and Spa in Riviera Maya, Mexico.

Bob told the resort ahead of time that we wanted to come for our anniversary, but held off until the weather was a little nicer. When we arrived at our room, the hotel staff had left us a gift (champagne and fruit) and a cute decoration on our bed made out of towels.

The next day was my 43rd Birthday. The hotel staff left another gift in our room (delicious Chocolate cake) and decorated our bed with balloons and a towel wrapped to look like a candle.

The property was fabulous. No shortage of places to lounge and do nothing. They had covered seating, covered beds on the beach and around the pool, rafts to float on the pool, and pool chairs everywhere. We even had our own pool chairs, hot tub, and a hammock outside of our room. There were multiple pools designed like lazy rivers that connected from one to the next. You could swim up to one of many bars to get something cold to drink. The resort was all inclusive, so you could drink and eat all day (including adult beverages). They even stocked the fridge in our room with cold soft drinks, beer, and candy (Peanut M&M's, Snickers, and Oreo cookies). We always removed the candy, so they would restock again the next day. There was no shortage of restaurants or bars. We ate at a different restaurant every night and still missed eating at a few. All of the evening meals where elegant dress with no reservations required. They had Indian food, French food, Mexican food, Asian food, a Lobster house, a Grill, special theme night meals on the property - which they dressed up to look like a wedding dinner. They also had a grill on the beach daily where they cut fresh coconuts and filled them with fruity alcoholic beverages. There are tons of off site things to do. We've been to Mexico several times, so this time we only took one trip off the property. We went to "Explor" which has Zip-Lines, rafting, swimming, and jeep riding. There is plenty to do on the property, so there really isn't a need to leave.

Here are a few pictures of the property and our outing to Explor....

This is a picture outside of our room (you can't see the outside hot tub from this picture). We also had another hot tub in our room, and they provided soft robes and slippers!

Some random pictures of the property...

The food was fabulous....

Mexican Fiesta night

The Indian restaurant (can you tell by the color?)

Dinner at the Grill restaurant

Dinner at the French restaurant (the best meal by far!)

The Grill on the beach

Our outing to Explor...

Explor - Jeep riding through the caves. There were 2 paths that took 20-30 min/each to complete.

Explor - Rafting through the caves - there were 2 paths that took about 30 min/each to complete. You could ride on a single raft or double. The rafts were nice because you could lean back - they had back rests. You paddled with hand paddles.

Explor - Swimming through the caves - There were 2 paths for swimming. We met a really nice couple from Scotland that completed most of the activities with us.

Explor - Zip lining - There were 2 Zip-Line courses. Both had 7 Zip-Lines. Each course took an hour. It was a blast!

School year-end progress report for Carver

2011-05-28T15:12:00.005-05:00

Carver did very well during his 6 weeks in a pre-school setting. He seemed to really enjoy it. He had the best 1:1 that we could ever hope for in addition to his fabulous therapists. They are all just unbelievable.

They made this cute picture for him at school. Very cute.

Carver's Progress (6 weeks in a pre-school environment):

PT:

Carver is tolerating tailor sitting position with minimum assist for 3-5 minutes with fair head control
Maintains head neutral position for up to 1 minute while in supported sitting or standing positions
Maintains hip and knee extension to allow weight bearing for up to 3-4 minutes with moderate assist to complete
Holds a supported quadruped position for up to 1 minute, weight bearing through upper ad lower extremities with fair form
Just initiated the gait training device with Carver and he tolerated it well with assisted upright forward position using tactile cues on his lower extremities to keep them on the floor and move forward about 5' with moderate assist

OT:

Primary emphasis within the classroom setting was to support Carver in his need for appropriate positioning and equipment to support that need. He has recently begun working on reaching for objects in various planes, but there are no significant changes in data at this time.
Carver has been working on removing his hat, but at this time requires hand-over-hand assistance. He does assist by extending his left arm when donning a coat, 2 of 2 opportunities.
During snack, he has been given opportunities for tasting, but again, the primary emphasis until recently was to fit him with an appropriate seating device.

VI/OT:

Carver has become more open to exploring braille books this quarter. This week he was interested in "reading" 7 pages (hand-under-hand) out of a 13 page book! Typically, Carver only explores the braille for 3 pages (hand-under-hand) before it becomes too much to handle.
Carver independently explores the braille 20% of the time by scratching it. His VI teacher would like to see this move to a side to side motion instead of up and down.
He is also doing better with turning pages, textures and graphics.
Carver will grip the page to help turn the page 40% of the time.
He will independently find/explore the tactile graphics 40% of the time.

VI:

This quarter Carer has had some changes! It took a while to get into the swing of school, but he has gotten better as the weeks progress. Carver is able to visually attend to objects on the light box 40% of the time. This is a little lower than last quarter, but keep in mind all of the changes.
He has reached out for objects independently only a couple of times. Once he notices an object he will usually track it for a few seconds if it moves slowly. Carver notices objects best in his lower right field.

SLP:

Primary emphasis within the classroom setting was to support Carver in his need for appropriate positioning and equipment to support that need. That said, he has been tasting a variety of foods. He loves gravy! Has tried spaghetti and pizza sauce.
He is learning to close his lips around a straw for 2/10 opportunities.
He is learning how a cup feels on all of the parts of his mouth.
Sometimes Carver shakes his head "no" when put in a chair for snack. The moments he shakes his head "no" are now honored, so that he begins to understand that he has power in communicating his wants/needs. He is learning to carry this "no" over to other places and spaces. It should be noted, that Carver has also had some colds, and he has been spitting his food at home. When he does not have a cold, he is much more accepting of oral intake. Success observed for 2/10 opportunities overall.

HI/SLP:

Carver is learning to adjust to the classroom and various teachers/facilitators/peers, as well as the routine in the classroom. He does not yet reach for a listener.
He requires verbal/tactile prompts to participate in turn-taking activities. He requires more than 2 verbal prompts to "stop, wait, turn on, off, go, give me ___, and put in. He requires 2 or less prompts to eat, drink, out.
When he wants more of an activity, he consistently kicks his legs. Now he is learning to vocalize or use his hand to gesture that he wants more.
Carver consistently indicates that he is finished with a task by pushing the "finish box" away or pushing the item away. He needs help dropping items into the "finish box", but upon hearing it drop, he pushes it away and smiles. In 5 opportunities, he pushed the "finish box" away 5 times.
He gestures "more" by scratching on his tray, the toy, or into his communication partner's hand (if he is already touching it). During games and songs, he indicates "more" by continuing the activity after is has been stopped.
He needs tactile cues along with verbal prompts to stop, wait, turn on, off, go and put in.
He will give his hands before playing games with more than 1 prompt and sometimes a tactile cue.
He chose between preferred and non-preferred objects when they were dropped onto his tray 2 out of 5 times. He did not choose an object that was offered him (cued with a noise of the toy) from someones hand.
He participated in turn taking with his chewie 2 out of 4 opportunities. He did not gesture "my turn" when it was his turn, but he reached out toward the sound of the chewie vibrating on the tray to indicate it was his turn. He dropped it on the try when it was someone else's turn.
When he is doing physical activity (swinging, bouncing on the trampoline, etc.), he indicates "go" by kicking his legs. He kicks his legs faster until his communication partner goes as fast as he wants.
His joint attention to task varies between 2 seconds to 1 minute and 30 seconds, depending on the task.

HI:

Carver has responded to the Ling sounds by smiling to the ah, ee, oo, and mm sounds consistently when in a quiet environment. His is inconsistent with the sh and s sounds.
Carver has been introduced to sounds for new toys and knocking at the door. He smiles when he hears the toys in a quiet environment. He recognizes a turtle toy and puts his hand on the top to turn it on. He recognizes the cloth piano and will put his hand on the appropriate part to turn it on. He is not showing a response to a door knock unless it is with wood on the door.
He smiles when his name is called, but it is not clear that he understands that it is his name or if he enjoys the sound of the voice talking with him.
We have not worked on distinguishing the names of objects during a routine.
He will reach for toys that he hears drop on his tray (if he is interested in them) 1 prompt.

There is so much for Carver to work on. Such small tasks are so big when you can't see or hear. It only complicates matters when your mobility is also hindered due to CP. Carver is making strides with the help of an extraordinary group of therapists/teachers and his 1:1.

Again, we can't wait to see where Carver is when the next school year ends!

School year-end progress report for Kinnick

2011-05-28T12:04:00.004-05:00

So sad to see the school year come to an end. The kids have both been making great progress.

Kinnick's progress (continues to get therapy/school homebound):

O&M:

Kinnick continues to show progress in her O&M skills. She has a positive attitude and loves to go outside to work. She loves to explore her surroundings and is improving her ability to utilize the AMD (mobility device).
She exhibits an understanding of laterality and responds appropriately to left and right commands with about 50% accuracy.
She is also beginning to identify elements of her environment outside. Several weeks ago, her dad drove past and said hi to Kinnick, while she was walking with her O&M teacher. The following week, when she past the spot where this had occurred, Kinnick stopped and said "dad". Her O&M believes she was able to recognize the area and remembered that this is where she heard her dad the week before. Yay!

OT:

Kinnick is using a pincer grasp to pick up small items about 65% of the time. She tends to still want to slide the items off the edge of a surface and rake them.
Kinnick requires moderate assistance to put on her pants (assistance with threading one leg and helping her place her hands on the pants accurately); She requires moderate assistance to put on her shirt (assistance to hold her shirt in the right spot, pull her shirt completely over her head, and orient it correctly to put arms in).
Kinnick is able to place the shapes in the form board with physical prompting to feel the shape first before pushing in. Tactile cues where added to help with locating destination of shapes. She does not know the differences between the shapes yet.
Kinnick is improving on taking off lids and getting good forearm rotation but needs assistance to understand to turn and let go and tun and let go to unscrew completely.
She is working on putting on large beads onto a dowel rod but has difficulty with orienting the bead correctly.

OT/SLP:

Kinnick is using her hands to touch a variety of foods to her cheeks, lips, and tongue for 5 trials, which is excellent progress! Bites: 0/3 trials. Lips, cheeks, tongue: 5/5 trials .
Kinnick is not yet drinking from a cup: 0/3 trials. However, she is holding a cup and placing it to her cheek and mouth. With support, she is allowing the therapist to put the cup to her lips, cheeks and tongue for 5/5 trials!
Kinnick has been bringing the spoon to her mouth on 2 occasions. Usually ask her to kiss it however, she does not seem to enjoy it.

SLP:

Kinnick continues to impress! She is consistent when using 2 word utterances for 80% of the time. Recently, she used describing words with her two word utterances (yellow duck, blue horse, green frog!). This is carrying over to a variety of educators/family. Kinnick is imitating 3 words consistently, for 70-80% of the time. Way to go!
Kinnick is able to answer simple "what" questions during 4/5 opportunities. She is able to answer "who" and "where" questions with verbal prompts during 3/5 opportunities. She is not answering "how" questions at this time. Nice progress.
Due to Kinnick's frequent colds, at times it has been difficult for her to develop consistency at the word level. That said, she has made significant progress with her words Initial position /p/: met /m/: met /n/: met /t/: met. Final position: /p/: 50% accuracy /m/: 50% accuracy /n/: 70% accuracy /t/: 60% accuracy.

VI:

Kinnick is doing great when reading braille. She is doing better keeping her hands together while tracking the words (3/5 times). Her finger strength is getting better. She can hold onto a Velcro mat with one hand and pull a ball off with the other. She is able to use her right and left index finger to writes dots 1 and 4. Kinnick still needs some help with the other four dots and will occasionally double up her fingers (The dots are the "letters" on her braille writer - there are a total of 6 dots that represent A-Z when used as single dots or combined to make a different letter). She is able to point out the difference between the picture and the braille in a book 5/5 times.
Kinnick has been introduced to letters a-h. She is still working on tactically identifying them. Kinnick is starting to tell her VI teacher that dot 1 is "a". She is also able to sing her alphabet. With more practice she will make good gains meeting this goal (learning her braille alphabet).
Kinnick is able to scan visually/physically for objects on the lightbox with 70% accuracy. When asked to identify a shape she typically says circle. We often talk about the difference between a circle and a square and count the sides and she will count them. She will tactically discriminate between 2 shapes correctly about 40% of the time, which is down a little since February. I think that she knows there is a difference but maybe cannot remember the words/choices and so she most often responds with circle. However, if she is only learning about squares one day she has no problem telling you that there is a square in her hand. She is a smart girl, hard worker and very eager to learn. There is no doubt that she will meet this goal (recognize shapes: Circle, square, and triangle).

PT:

Kinnick can walk up and down a flight of stairs, at home, using same step pattern, and using handrail or wall for support on 2/4 trials.
She can pedal a tricycle 10 to 15 feet, independently keeping her feet on the pedals, with verbal cueing, but requiring maximal assistance (requiring assistance for 75% of the task) to advance and steer the tricycle on 4/4 trials.
Kinnick can stand on either leg for 2 seconds, without losing her balance on 3/4 trials. She can bunny hop off the floor, but requires two hand assist, to clear both feet, from the floor, at the same time, on 2/4 trials.

This is all great progress considering these goals have only been in place for about 6 weeks! Again, I can't wait to see where Kinnick is at the end of next school year!

My next post will go over Carver's school year-end progress.

Kinnick's IEP Goals

2011-04-19T20:08:00.002-05:00

Kinnick's IEP goals for the year....

O&M:

Given instruction in orientation and mobility, Kinnick will develop functional use of laterality and directionality in relation to self by correctly responding to commands involving "left", "right", "in front" and "behind" with 80% accuracy.

OT:

Kinnick will demonstrate the following functional fine motor, and cognitive skills: Put small objects into a small hole in a container maintaining a pincer grasp on the object. Donning pants and shirt independently with the exception of fasteners. Place and identify 3/3 shapes in a form board. Participate in at least 5 different 2 handed tasks in which each hand has a different action (ex. stringing beads, screwing on/off lids).

SLP/OT:

Kinnick will increase self feeding skills and oral motor awareness by demonstrating the following on 3 of 4 occasions: Enjoy 2-3 bites of a variety of foods while she utilizes an eating utensil. Enjoy 2-3 sips from an open cup.

VI:

Given braille materials and a braillewriter, Kinnick will demonstrate the following pre-braille tactual skills: Various fine motor activities, tracking tactile symbols with two hands from left to right, scribbling on the braillewriter, and differentiating between braille and tactile symbols, on 4/5 opportunities.

Given direct braille instruction, Kinnick will tactually recognize all 26 letters of the alphabet with 80% accuracy.

Given shapes, Kinnick will scan, identify and discriminate between a circle, square and triangle with or without a lightbox with 80% accuracy.

PT:

Kinnick will complete the following functional gross motor skills with 75% accuracy: Going up/down a flight of stairs at home marking time using hand rail or wall without physical prompts. Pedaling a trike with contact guard to stand by assist for a distance of 10-15' to work on lower extremity strength. Stand on either leg 3-5 seconds without loosing balance. Bunny hopping, clearing both feet together at the same time, of the ground 2-3 times.

SLP:

Kinnick will produce 2-4 word utterances using signs, and or words, for a variety of pragnmatic functions (comment, reqest, label, indicate a want or need, request assistance, answer yes/no, gain a person's attention) with 80% accuracy across 3 consecutive interactions with multiple educators and peers.

Using signs or words, Kinnick will receptively or expressively answer a variety of simple wh- (what, who, where, how) questions, during 4/5 opportunities with a variety of educators. Questions may include (What is _____? How does she feel?)

Kinnick will correctly produce early developing consonants (p, m, n, g, k) in the initial and final position of words, with 70% overall accuracy.

This may not sound like much, but try doing them with your eyes closed. Suddenly, they all become a bit more difficult.

I'm excited to see Kinnick meet all of these new goals. She's off to a good start. Tonight, Kinnick counted from 1-10 without help! Of course when we got the recorder, she refused to count for us. We'll work on getting it on video. She has also started using a tippy cup. She lifts the cup, brings it to her mouth, and takes a few sips. It's a start!

Carver's Snappy Seat is here!!

2011-04-17T17:13:00.002-05:00

While we were in MI, Carver's Snappy Seat showed up! It's been on back order for quite a while.

I couldn't wait. I had to put it together right away.

It really does a good job of holding Carver in an upright position. I can't wait to take him for a walk on his trike! Now, I need to get the tandem insert ordered, so him and Kinnick can ride together.

Trip to Michigan for eye EUA's

2011-04-17T16:34:00.004-05:00

We're back from the long drive to/from Royal Oak, MI. The kids always do great in the car. Kinnick did beg to go to the Beach and then begged to go home, but other then that, they did pretty good.

Carver's eye exam didn't yield anything new. His eyes seem to be pretty stable. The doctor said that should could do a surgery to make them a little better, but it wouldn't be worth the risk of what we could lose.

Kinnick's eye exam wasn't quite as good. The pressure in her right eye has increased, again. This means that the last glaucoma surgery is no longer helping in the right eye. We going to increase the eye drops and hope the pressure comes down. She will get the pressure checked again in about a month (here in Wichita). We'll tweak the drops until we can return to MI for more surgery in 6-9 months.

Here are some pictures from the trip...

Carver taking a nap on the way to MI.

Kinnick Full of energy on the ride to MI.

Carver done with his nap.

Kinnick finally wore out....

While in MI, we got to visit a great Micro Preemie friend, Conner. Kinnick followed him around saying, "Hi", and begging for kisses. She even backed up and sat on his lap. I don't think he knew what to think of her. Stacy and David, Thanks for having us over. We miss you guys!

Tried one of the Kid's meals at Applebees. No joke, an Applebees in MI "accidentally" filled a child's tippy cup with Margarita! I enjoyed my Kid's meal. Luckily my kids don't like to eat or drink anything new. So, no worries that my kids might "accidentally" get a Margarita served to them in their tippy cup.

Kinnick talked non-stop about going to the "beach". So, we stopped in a town near the great lakes, so Kinnick could see the beach. It was too cold to do anything, but she got to see the beach.

On the way home, Kinnick helped her baby read a book.

April 9th, 2011

2011-04-09T22:29:00.001-05:00

This past week has been really busy.

Carver completed his first week of pre-school outside the home in a school room setting.
Big brother, Hayden passed his Catholic School Kindergarten screening. So, we had lots of enrollment papers to complete.
Kinnick had an eye exam to get a new prescription for glasses. We tried the contacts and really liked them, but they just don't stay in her eyes. I'm not sure if it's because she doesn't understand what's going on, so she rubs them out. Or, if her eyes are just so miss-shaped from all of the surgery - making it impossible for the lenses to stay on her eyes. We're going to try glasses until she is a little older. Carver is starting to really use his vision. I'm still not sure if he's using any vision in his right eye, but he is definitely trying to use his left eye. So, we will most likely look into glasses for him. I worry about putting anything else on his poor head. I'm afraid he will injure himself. Anyone else have a child with spastic quad cp, a cochlear implant, and glasses? Is your child mobile? Carver only rolls. I'm guessing that they make flexible glasses - or at least I'm hoping.
Kinnick seen her pulmonologist. She's been sick since December. As soon as she gets well, she gets something else and is back on oxygen. She's finally oxygen free, but the doctor wanted her to take a steroid for a week, just to make sure.
Big brother, Gregory passed his driving test. This was just for his learners permit. He's currently taking driver's ed. We've put it off as long as we could. He's 17, so it's time to get it done.
Lastly, we're preparing for our trip back to Royal Oak, Michigan for EUA's for Kinnick and Carver. We leave first thing Monday morning. Nurse Marci will be going with us again. She always makes the trip much nicer. I'm looking forward to the trip. I love to see the people we met while Kinnick and Carver were in the NICU. I remember how horrible it was to be so far from home (16hrs) for 2 months. It was very lonely. I didn't want to leave the twins, so I refused to go home until they went home. The people I met made the stay so much better.

Carver's 1st Day of Pre-School

2011-04-05T21:26:00.005-05:00

Today was Carver's first day of Pre-School. He'll be attending 3 days a week for 1 1/2 hrs/day. After 3 weeks, he will start attending 3 days a week for 3 hrs/day.

It was a windy day and a late start. The school/transportation department was working up to the last hour organizing the busing. - a lot of work to drive next door. If you were to stand in our cul-de-sac and look straight ahead, you would see the school. They arrived about 15 min late, so Carver's first day of school was shorted to closer to an hour instead of 1 1/2 hrs. I'm sure things will go smoother now that everything has been figured out.

The bus has a nice electric ramp/lift, so that Carver can easily be placed in the bus - remaining in his wheelchair at all times.

The walk to the bus at the end of the driveway. Carver looks so tiny in his wheelchair.

Getting ready to ride on the electric ramp/lift. You can see how windy it was. Carver couldn't even open his eyes.

Ready for the ride up into the bus...

Quick ride to the top and into the bus....

They secured Carver's wheelchair with tie-downs. His 1:1 is seated to the left of him.

Kinnick got on the bus to say bye-bye to Carver.

Carver was completely wiped-out this evening! He participated in story time, recess (swings), and bye-bye time at school today.

The remainder of this school year will be spent getting to know Carver, working Carver into the classroom, and finding out what works best like seating/positioning and how to participate in all activities. The school is very good about insuring that all kids participate in all activities in some way. In other words, all activities will be modified to accommodate Carver. His 1:1 will be with him at all times insuring Carver's participation. She will offer any help necessary without allowing Carver to be completely dependent. The goal is to help him do more for himself. It will be a hard balance to give him the support he needs without giving him too much help - preventing him from doing things he CAN do or can LEARN to do.

March 29th, 2011

2011-03-29T21:22:00.001-05:00

Happy Birthday Kinnick and Carver!!!

Happy 4th Birthday!

2011-03-27T16:55:00.006-05:00

It's so hard to believe that Kinnick and Carver will be 4 on Tuesday! We celebrated their birthday this weekend.

My little Prince, Carver

My little Princess, Kinnick

The lights on the cake are way better then eating the cake. Yes, it was a "No Go" for cake again this year.

Carver and his cake

Kinnick with all her packages

Kinnick and her Tag Junior

Clothes from Grandma

Books, books, and more books. A favorite.

All of my gifts. What a lucky girl!

Carver opening his gifts.

Cool new switches

A lantern that lights up

More packages to open

Cool new music ball from Nurse Jane.

The kids had a great Birthday even with their crappy colds.

Happy 4th Birthday Kinnick and Carver! You've come a long way!

Carver's Designated 1:1

2011-03-23T19:08:00.003-05:00

I failed to mention one thing about Carver's IEP. Carver will have a specially trained 1:1 to accommodate his needs. This 1:1 will ride the bus to/from school with him and will be with him the entire school day. Here is the designated 1:1's job description.....

The role of the designated, trained one-on-one will be:
-Facilitates access to the environmental information that is usually gained through vision and
hearing, but which is unavailable or incomplete to the student who is deafblind.

-Facilitates the development and/or use of the student's receptive and expressive communication
skills.

-Develops and maintains a trusting, interactive relationship with the student who is deafblind
that promotes social and emotional development and well-being.

-To work one-on-one with the student to implement and facilitate the process of intervention
designed by the teacher and the student's educational team.

-Prepares materials for the deafblind student with whom he/she works in coordination with the
teacher.

-Facilitate the student's connection to others by explaining and modeling the student's
communication system, allowing the student access to the world, and creating a safe and supportive
environment that encourages successful interactions.

-Utilize good observational skills and record progress in daily logs, charts, etc. as directed.

The designated, trained one-on-one will be considered trained when the person:
-Has skills in deafblind intervention including communication methods, environmental access,
sensory loss, deaflblind instructional strategies, and how to create independence rather than
dependence.

-Knows the basic role of the designated, trained one-on-one related to information access,
communication, and social and emotional well-being.

-Is able to provide appropriate deafblind intervention strategies.

-Knows the vision, hearing loss and physical capabilities of the student and understands their
functional implication.

-Is familiar with the student's likes, dislikes, needs, and routines.

All I can say is, Wow! I feel like we have an awesome bunch of therapists and that we are very fortunate. I couldn't ask for anything more.

Carver's IEP Goals

2011-03-19T21:03:00.003-05:00

Carver's new IEP Goals:

Goal 1 (PT): Complete the following with 75% accuracy...

A. Tolerate a tailor sitting position with minimum assist for 5-10 min with adequate head control.

B. maintain head neutral position for a minimum of 5 min while in supported sitting and or standing positions.

C. Maintain hip and knee extension to allow weight bearing for a minimum of 5 min with minimal assist/support.

D. Hold a supported quadreped position for 2-3 min, weight bearing through upper and lower extremities with fair form.

E. Tolerate using a gait training device to move forward in an upright standing position for 5-10 feet with appropriate physical prompts/supports and minimum to moderate assist from an adult.

Goal 2 (OT): Demonstrate a functional use of objects in the classroom environment

A. Demonstrate appropriate grasp and release of 3 objects in a container with minimal physical prompting.

B. Reaching for objects in all planes with minimal physical prompting when vibration, song, or light is activated while in a seated position on the floor.

C. Participate in at least 3 different 2 handed tasks in which each hand has the same action.

Goal 3 (SLP): When seated beside the feeder with support and/or equipment...

A. Demonstrate a safe swallow and maintain mobility/movement related to feeding when given a variety of foods (including, but not limited to taste, temperature, smell, and thickness) and utensils (including, but not limited to soon, cup, and straw).

Goal 4 (SLP/HI): Given decreasing facilitation...

A. Demonstrate pragmatic language abilities including but not limited to, initiate, request and refuse during various activities by gesturing/vocally responding using a switch to various educators/team members and peers. Gesturing/vocalizing includes, but is not limited to answering Y/N, "more" by scratching his fingers against a listener's palm, gesture to himself for "my turn", touch a listener to gain his/her attention.

B. Demonstrate the ability to follow verbal directions, including, but not limited to "stop, wait, turn on, off, eat, drink, go, sit up, give me ____, put in" during daily routines and transitions, with no more than 2 verbal prompts.

C. Demonstrate the ability to accurately choose between a variety of objects, preferred vs. non-preferred.

D. Demonstrate the ability to participate in turn taking activities (games, songs) with no more than 1 prompt.

E. Increase joint attention to a task to 5 min.

Goal 5 (HI): Given facilitation...

A. Show recognition of Ling sounds (ah, ee, oo, sh, s, and mm) when the sounds are presented 1 foot away.

B. Will learn 10 new sounds.

C. Will show a response of attendance to the listener (smile, lifting head, tuning head) when his name is called.

D. Will listen for the sounds of objects and retrieve the objects when the object is 2-3' away from him.

E. During a routine, Carer will be presented with the name of 2 objects (1 syllable word vs. 2 syllable word) and he will choose the correct object.

Goal 6 (VI): Develop visual efficiency

A. Carver will attend to an object on a lightbox.

B. Carver will track on object on a lightbox.

C. Carver will physically locate an object on a lightbox.

Goal 7 (VI): Given a book...

A. Carver will locate tactile graphic 50% of the time.

B. Carver will locate braille 50% of the time.

C. Carver will turn pages independently with 75% accuracy

Goal 8 (SLP/OT): Improve self-help independence within the classroom environment

A. Bring a cup to his mouth with verbal and visual cues only

B. Utilize a spoon for self feeding with minimal assistance

C. Demonstrate the ability to remove his own hat

The "Finish Box"

2011-03-06T19:03:00.003-06:00

Since Carver is Blind/Deaf, it's important that we teach him that things don't just disappear when they are no longer in your hands. So, we keep a tin cake pan next to his chair. We call this the "finish box". He is able to use his Cochlear implant to hear when something falls into the tin cake pan. Then, if he wants something to play with, he knows where he can find it. He is supposed to put things in the tin pan when he is finished playing with them.

I'd say he's getting pretty good at using the "finish box".

That's a big pile of finished toys.

Kinnick loves music. Her newest thing is to beg for everyones I-Phone, so she can listen to the music. Bob's I-Phone quit keeping a charge, so now it's Kinnick's. Here's where we found her today - listening to music on her I-Phone...

Auditory Conditioning / Operant Audiometry

2011-03-02T20:38:00.005-06:00

I asked Kat to explain the Auditory Conditioning System that we are trying with Carver, and this is how she explained it...

We are teaching Carver to discriminate both the absence and presence of 4 combined tones. Once he learns to press the switch to indicate he hears a tone and does not press the switch when there is silence. The end goal is to get him to press the switch to at least 4 different tones at 65 dB presented individually, so that we can then take the switch to the audiologists so that they can get a behavioral audiogram, and hopefully, have more information with which to map the implants/ or a hearing aid. We are hearing more and more how many children with multiple needs cannot simply hold up their hand or drop a block in a bucket when they hear. At first, Carver wanted to press the switch to get the reinforcer, but he didn't do that this week...we were impressed that he did smile sometimes when he heard the tone and put his hand back to the place on the tray. However, he waited to be prompted. Melinda and Tara will see if we need to position his hand differently to encourage him to hit the switch. We might need an adaptive elbow holder so it is simplified. The following parameters are factors for individualizing for any child.

1. Determining a strong, consistent contingencies or multiple positive contingencies.
2. Determining the best body positioning and type of response for each child.
3. Determining the best environment (no one talking, lights down for better visual or more contract for some children).
4. Developing a program so that the tones can be presented consistently (sound meter and downloading apps).
5. Determining the easiest motor response for the individual child.
6. Determining the timing features and types of prompts to be used.
7. Developing an interrupter so that the child does not get the contingencies without a tone first & delaying the tone as long as the child is activating the switch.
8. Securing the switch on a tray so the child does not try to mouth or pick up the switch...and being able to connect the interrupter switch so it can't be pulled.
9. Collect and analyze data on prompted and unprompted responses.

10. Giving the child a consistent program across time so that they can learn the task.

We will look at the data to determine if the program needs to be changed. We go by the philosophy that it isn't a child learning or not, but if the program is working or not. We will discuss how it can be made more simple if we don't see Carver responding without prompts...so, I am not sure how long it might take.

Fun on the AmTryke

2011-03-02T19:23:00.002-06:00

Kinnick riding the AmTryke...

Kinnick backing up on the AmTryke...

Kinnick cruising down the driveway....

I'm still trying to figure out everything to order for Carver's seat. I can't wait to get a seat that will allow him to ride on the AmTryke.

A new AmTryke - Donated to Kinnick and Carver

2011-03-01T20:08:00.002-06:00

I received a call from one of my Case Managers yesterday (MRDD). She had a lady donate their child's AmTryke. This is a special needs tricycle. She asked if we would like to have it. Of course I said, yes! I was wanting one for the kids, but they were so expensive. It cleaned up wonderfully! Kinnick has spent all evening trying to figure it out. She is able to push with her feet (on the floor) and turn the handles to go. We're going to work on pushing - using the pedals.

Carver isn't able to use the AmTryke as-is. So, I'm going to order a snappy seat, and an H harness. This will give him the security he needs to ride of the tricycle. The picture below doesn't show the H harness. It comes separately.

The AmTryke is made by Kettler. So, I sent an email to see if we can get the tandem insert. This will allow Kinnick and Carver to ride together. I'm hoping they say the insert will work on the AmTryke. Just looking at pictures, it looks like they use the same base frame. I'm excited to hear if it will work.

IEP's, IEP's, and more IEP's

2011-02-27T16:35:00.004-06:00

Kinnick and Carver's IEP's are due again. The IEP's have to be reviewed once a year. This year, we're going to let Carver attend pre-school. He's done well without oxygen at night (except when sick), and when he does get sick, it doesn't seem to drop to his lungs. Kinnick will be staying home again this year unless things change. She continues to have problems with lung infections. Anytime she's around someone with a slight cold, it turns into pneumonia. We still haven't been able to take her off oxygen at night, either. So, I just don't view her as a candidate for school, yet. Carver will benefit from going to school. There is just so much more available to him at the school. I'm an equipment freak and do my best to get anything and everything possible to help both of the kids at home, but it just doesn't compare to what's available at school. For example, at home Carver is getting a total of 3 visits/MTH from the PT. Each visit is only 30 minutes. In the school, he will get 3 visits/WK from the PT. Each visit will be 15 min. In addition to the visits, Carver will be placed in positions during the day to help strengthen his core, neck control, standing, sitting, crawling, etc. This is a huge difference, and he really needs it.

I spent 4 hours in IEP meetings on Friday, and we're still not done. We'll meet again in a couple of weeks. We've worked through most of the goals for both Kinnick and Carver. We still need to work out Nursing in the school for Carver, a 1:1 for Carver (Intervenor type person) for the classroom, and busing. In order for Carver to take the bus to school (which is next door), he will require a 1:1 on the bus with him. Details, including responsibilities, need worked out for each of these things. The details need carefully thought through and worded in a way that benefits Carver and insures that he will have all of the support necessary to make school a success.

I was pretty pleased with all of the goals that the therapists came up with for the kids. They were on the same page as me, and made complete sense. I added a few small goals without any push-back from the therapists. I'm excited to see where we are this time next year.

I do have a question for my followers..... Have any of you had success holding your child back a year before going to Kindergarten? If Kinnick and Carver were born on their actual due date 7/16/2007, they would have been really young to start school - with a 8/1 birthday cut-off date. So, even though they were born 3/29/07, I still feel like they won't be ready at age 5.

I'll list all of our IEP goals in my next post.

February 17th, 2011

2011-02-17T20:04:00.002-06:00

This is hilarious! Carver knows a lot more then people give him credit for.....

Check this out. Carver knows how to turn his musical toy back on. I wondered how it was getting turned back on after I turned it off in the evenings.

February 10th, 2011

2011-02-10T21:26:00.002-06:00

Sorry that I haven't posted lately. Kinnick and Carver have both been very sick. The doctor wanted Kinnick admitted to the hospital. We managed to convince him that we could manage her just the same at home. We've been struggling since Friday to keep her oxygen saturation in the 90's. At times, I wasn't sure we were going to be able to do it. She's been on up to 2 lt of oxygen 24hr/day. We've been giving her tylenol/motrin around the clock for a fever. We finally got an antibiotic because it went to her lungs. She has pneumonia. Since she got the antibiotic and a super boost shot of Rocephin, she's doing much better. Hopefully, she'll be well by Monday. Carver has a terrible cough and sinus infection. He's been so miserable. All he wants to do is cry. I'm sure it hurts to cough. Neither are eating anything - Thank God for the G-tube, or they would both be in the hospital. Carver also got an antibiotic, so sleep may be in the near future for all of us. That would be nice :o)

Merry Muscles in Action

2011-01-30T21:56:00.002-06:00

Carver jumping in the Merry Muscles: Carver has always enjoyed hanging his head over the side of things. He used to do this all of the time in his baby swing. He is very capable of keeping his head in the back of the jumper, but insists on hanging it over the side. Kinnick keeps saying that Carver is "Done". She's very impatient and can't wait for her turn to jump.

Kinnick jumping in the Merry Muscles:

January 26th, 2011

2011-01-26T20:42:00.002-06:00

We had a follow-up appointment with Carver's Neurologist this past Monday. We didn't actually see the Neurologist that did his Botox. Instead, we seen his PA. It's easier to get in to see her. I told her that I wasn't all that impressed with the results of Carver's Botox. I think it helped some, but it just wasn't as fabulous as I had dreamed it would be. Well, the PA started looking at Carver. She took his shoes and socks off and then twisted his ankles around and bent his legs, etc. Then, she said, "His ankles feel great." Ok....well, I attributed that to getting new Cascade DAFO's. Carver had crappy AFO's that caused his ankles to tighten up. So, we went back to DAFO's. His ankles were always good with the DAFO's. Then after talking some more, I said that I just didn't feel like the Botox did much for his hamstrings. I wondered if next time we could get a little more in his hamstrings. She looked at me funny and then looked at her computer. Then, she said, "Dr. didn't do any Botox to Carver's hamstrings." What? He was supposed to do 65 units to the adductors and 35 units to the hamstrings. She said, "No, he did 65 units to his adductors and 35 units in his gastrocs (to help his ankles)." Holy crap! No wonder his hamstrings are still tight. So, I looked back at the paperwork that he gave me after our last meeting. Per the paperwork, he wrote - "PT alert - Significant spasticity in the Legs. More in addutors and hamstrings." Then, he wrote - "Plan - Schedule Botox injections: 65 units in adductors and 35 units in gastrocs. Bilaterally - total 200 units." I hadn't read the paperwork because he verbally told me the plan. The verbal plan was different then the written plan. Clearly, he screwed up! What a complete waste! The PA said that she would make sure that the next Botox injections would include the hamstrings. You think?

Art work by Kinnick

2011-01-17T18:41:00.003-06:00

The things that Kinnick and Carver do never ceases to amaze me. This weekend, I found Kinnick at her art easel coloring. She has special crayons that can be used on a white board. It's really hard to tell the difference between most of the colors. They are all very dark and the wrapper is the same color on all of the crayons. She was frustrated because she couldn't find the "blue" crayon. I helped her find the "blue" crayon and she finished her art work.

Not bad for a little blind girl.

January 12th, 2011

2011-01-12T21:31:00.003-06:00

It's been a while since I posted an update on Kinnick and Carver. Life's been a lot busier, lately. I returned to work Full time in November. Then there was Thanksgiving, then Christmas, then Dad's Cancer. Adjusting to Full time hasn't been too bad, but it doesn't leave much time to do the things I need to do at home. I'm hoping that with the holidays being behind us, I can finally get adjusted. There are still so many things that need added to my schedule. Kinnick and Carver both need eye appointments. Their eye appointments take forever. I'm not talking about eye appointments in Michigan. I'm talking about vision appointments here in town. I haven't been to the dentist in forever, so I need to make an appointment to get my teeth cleaned. I need to start working out regularly. We're in desperate need of a vacation. We've looked at a few places, but we don't even know where we want to go. Kinnick and Carver's IEP's are due in March, and I'm dreading the process. I'm still worried about their health. I know they would do great in school, but the health issues continue to be a problem.

The results of Carver's botox are starting to show. I'm not seeing the huge differences that I was expecting. It's made a difference, but not to the extent that I expected. His legs are more relaxed, but still scissor easily. He's not as tight as he was before. I can tell that the muscles are a little looser.

We got the Merry Muscles jumper that we ordered before Christmas and the kids love it! It's much more size appropriate. I need to post a video to show how much fun the kids are having in it.

Carver is doing a little better in his Pony. He needs prompted to move, but once he gets going he really likes it. It's nice to see Kinnick and Carver at the same height. Today, Kinnick raced around the kitchen next to Carver while pushing her corn popper.

Kinnick has had an ongoing cold that has required the use of oxygen during the day on several occasions.

We still haven't received our approval for Carver's cochlear implant. Not that it matters, Advanced Bionic's recall is still in effect, so we couldn't get the implant yet, anyway. I'm frustrated that it is all taking so long, and I haven't really had the time to check on it.

There are so many things to talk about, but it's late. I'll update more later.

Thanks for all of the thoughts and prayers for my Dad. I truly appreciate it.

New blog for updates on Dad

2011-01-11T18:47:00.008-06:00

I have created a new blog to provide updates on my Dad's fight with esophageal cancer. Please feel free to view the new blog at http://www.beatingesophagealcancer.blogspot.com/

Cancer Sucks

2011-01-03T21:12:00.003-06:00

I recently posted about my Dad being diagnosed with cancer of the esophagus. Unfortunately, esophageal cancer often doesn't present symptoms in the early stages of the disease. The symptoms are not obvious, at all. For example, some of the symptoms are indigestion, heartburn, acid indigestion (caused by chronic acid reflux), hoarseness, chronic cough, and hiccups. The most common symptom is difficulty swallowing. However, the latter of these symptoms doesn't appear until the more advanced stages. Just to give you an idea, my Dad still hasn't had any difficulty swallowing and he is at Stage IVA. His cancer was found when he went to the doctor due to a swollen lymph node in his neck. He thought that it was related to an illness that he couldn't kick. At this point, he was already at a Stage IVA. Esophageal cancer is considered to be a stage IVA when the cancer has spread to nearby or distant lymph nodes. A pet scan revealed that Dad has a tumor in a lymph node in his neck, a tumor in a lymph node in his armpit, a tumor just below his diaphragm where 2 lymph nodes come together, and then the primary source - his esophagus and upper stomach. Mom originally said the tumor in his esophagus is 5 in. It is actually 5 cm.

Today, I attended my Dad's appointment with his Oncologist. I don't know much about cancer and I wanted to understand what we were up against. Esophagus cancer found at a Stage IVA doesn't have very good survival odds. My Dad's cancer is at the base of the esophagus and the top of the stomach. Removing the cancer at this point is not recommended. The surgery is horrible and the risks are very great. This is something they would attempt at a Stage I, II, and maybe III. If there was nothing else they could do, they may attempt it at Stage IV, but the risks are overwhelming and don't carry very good odds. The plan of attack for my Dad will be to start Chemo right away. He goes in first thing Wednesday morning to get a Port-a-cath. Then, later that afternoon, he will have his first round of Chemo. He will repeat the Chemo once every 3 weeks. They will do another pet scan after 2 rounds to see if the tumors are shrinking. If they shrink, then this is good. They will continue the Chemo once every 3 weeks until the tumors are no longer noticeable on the pet scan. If the Chemo doesn't shrink the tumors, they will try a more aggressive Chemo. This will also take place once every 3 weeks, and will be tested to see if the tumors shrink. If this doesn't work, then they will try radiation. At this point, his cancer is not curable. It's "treatable" with the possibility of putting the cancer into remission. It is optimistic to say that there is a 10-20% chance of putting the cancer into remission. These odds are no different then bringing Kinnick and Carver home alive from the hospital after being born at 23.4 weeks gestation. I come from a family of very strong men and women. We are all fighters. My Dad is ready to kick this cancer's butt! Please pray with me that he has the strength to remain positive and the courage to fight this terrible disease. Please pray that the cancer doesn't make him really ill and that his quality of life doesn't have to suffer. Please pray that the Doctors have the knowledge and skills to address the cancer head on without missing a beat. Please pray that my Dad is able to beat these odds.

My heart is so heavy. My Dad is such a strong man and doesn't ever show his emotions. He's such a private person. I know he is hurting and scared, and that really hurts me. I feel so helpless.

December 28th, 2010

2010-12-28T20:11:00.002-06:00

Kinnick is feeling better. I think she caught a little flu bug. Christmas day, she had a temperature and a snotty nose. She seemed to feel better by evening. On Sunday, she had diarhea - yuk. Then, last night a temperature, again. Hopefully, we're done with that bug.

Carver got his botox injections yesterday. They put 65 units in each aductor and 35 units in each hamstring. We won't really see the results for 2-4 weeks. He was sedated for the procedure. He was a little crabby afterwards, but I believe mostly due to the anestesia. He always feels crappy after being sedated. Today, he's back to himself. He has a bit of a cold, so that's giving him trouble eating and breathing, but nothing too bad.

I don't get much time to take care of myself. I've been having terrible back pain for quite some time > year. It has finally gotten to the point that I needed something to help with the pain. So, I seen the doctor yesterday. She gave me some muscle relaxers and some prescription motrin. The muscle relaxer seems to really help, but makes me tired. While there, I got in trouble for the usual high blood pressure. My blood pressure was 168/94, so I have to monitor it for the next couple of weeks and then see the doctor again. I've been trying to avoid blood pressure meds (I hate taking meds), but she may not let me out of it this time. I just got a treadmill, so I'm hoping a little exercise will take care of it. The problem is that I have no energy, so it's hard to get motivated enough to get on the treadmill. High blood pressure runs in the family. I'm not a drinker or a smoker, nor am I over weight. I just have bad genes, and a lot of stress. Another thing that I'm dealing with (my whole family is dealing with), is that my Dad was recently diagnosed with esophagus cancer. He's 63 years old. This is a cancer that typically presents itself around age 60. We don't know much about it, yet. I only know that the cancer is about 5 inches long, and at this time, it is not operable. My Dad sees his doctor on Monday to get the course of action. Please pray that he gets the meds that he needs to shrink the cancer, so that it becomes operable.

Christmas Day

2010-12-25T23:17:00.002-06:00

I think we had a little too much fun before Christmas. Kinnick has done pretty good this winter, but today was a crappy health day. Kinnick didn't want to get out of bed this morning, and required oxygen most of the day. I gave her some extra breathing treatments, some motrin, and some cold medicine. By early evening, she was able to give up the oxygen, but was still pretty sluggish. Hopefully tomorrow is a better day.

The rest of the family was healthy and had a great day. We opened presents and then stuffed ourselves with Turkey, mashed potatoes, stuffing, cranberries, rolls, and the works.

A visit from Santa Claus

2010-12-25T22:53:00.003-06:00

While decorating cookies Christmas Eve, we received a visit from Santa Claus. The front door opened, a gust of wind came in, and there he was.... SANTA CLAUS.

Carver didn't mind sitting on Santa's lap.

Kinnick didn't know what to think of Santa Claus - she kept her distance as if he was Uncle Bill.

Big brother, Hayden didn't mind sitting on Santa's lap and was very excited to get the game that he asked Santa to bring.

The cookie decorators (helpers).

We had a blast playing guesstures that evening. Here is a picture of Uncle Bill acting out a "Jockey". Can you tell? His team missed this one. I thought he made a good jockey.

Thanks for the laughs Tonya, Bill, Tyler, and Miles (My sister's family).

Early Christmas

2010-12-25T22:25:00.004-06:00

Nurse Marci and her mom, Grandpa Gray (GG) came to visit a few days before Christmas. They brought several nice gifts for Kinnick and Carver. Kinnick and Carver got the opportunity to practice opening gifts. Wow, I was quite surprised how well they did unwrapping their gifts.

One of the things that Carver got was a drum that lights up and plays music. It's just the right height and is easy for Carver to hold and play. Kinnick was very interested in the new drum and was even a little jealous.

Kinnick quickly forgot about the new drum when she saw her new easel. The easel was just the right size. One side is a magnetic dry erase board. The other side is a chalk board. Both sides hold paper for drawing. Nurse Marci also got some really neat crayons that are for dry erase boards. Very cool. Kinnick has really been getting into coloring. We hang her pictures on the fridge and she frequently visits the pictures.

Nurse Marci loves shoes, so we rarely need to buy shoes in our house. Carver got the cutest pair of chucks - navy blue high tops. We have a really hard time keeping shoes on Carver. These stay on really good.

Kinnick got a new pair of boots - very cute. She kept them on all day. We didn't take them off until bed time.

Thank you Nurse Marci and GG for the great gifts!

December 11th, 2010

2010-12-11T20:20:00.002-06:00

It seems like I've talked a lot about Carver lately, so today I'll give you a little update on Kinnick. Kinnick is still doing really good with her primary colors. She is very consistent when telling us her colors, so it's obvious that she can see in color. She insists on telling you the color of everything. We've started working on counting 1-10. We're starting slowly. She's got 1-2 down, and she is now counting 2 items for fun - ears, eyes, toys, books, etc. I'll do a video when she is able to count to 10. We're also working on ABC's. We say each letter, then she repeats the letter. In some cases, she'll say the next letter in line. For example, if I say "H", she'll say "I". She can repeat all of the letters in the alphabet in her raspy little bedroom voice. It's so cute. Hopefully, she'll know her alphabet by the end of the school year. If so, I'll be beaming with pride (as if I'm not already). She hates eating, but will now request bites of her yogurt at breakfast. She refers to yogurt as her "yo-yo", and often wants to carry a container of yogurt around the house. She can clear an entire shelf in the pantry searching for the yogurt. She can open the doors to the pantry, now. You can always tell when she's been in the pantry - it looks like a tornado went through - every time. She's also requesting to "eat" shortly before meal time. She comes to us and says, "eat". Hard to believe because she really doesn't like eating.

So far we've been lucky this winter. Kinnick and Carver have already had several colds, but nothing that has required a significant amount of oxygen. Extra breathing treatments and a slight increase in oxygen has taken care of the colds so far. Each year seems to get better.

Carver's Special Tomato MPS for Feeding

2010-12-10T18:04:00.004-06:00

Carver's new Special Tomato MPS came today. This will be used to replace the baby highchair. It should grow with him until at least age 8. At the rate my children are growing, this will fit him until he's a teenager. It will be a bit of an adjustment going from a baby seat to a bigger seat. This seat is lower then a baby seat, so I'm going to buy a small chair on wheels - like the ones you see in the doctors office with no back on them. This will put us at Carver's level, so we can feed him. Other then that adjustment, this should work out great and can also be used for Kinnick.

For fun, here is a picture of Kinnick going for a ride in the back of Hayden's dump truck - wearing Carver's slippers.

Advanced Bionics Recall puts CI on hold

2010-12-08T20:36:00.002-06:00

We got some bad news today. Advance Bionics had to recall their HiRes 90K Cochlear Implant. This is the implant that Carver has. They have had 2 out of 28,000 devices confirmed where the device caused pain, overly load sounds, and/or sudden shock sensation in the implanted ear. They have 9 other cases pending. The solution is to remove the Cochlear Implant. The issue presents itself within the first 90 days of device use. Carver's current device is working fine, so no reason exists to remove it. However, this means we can't get another Advanced Bionics implant until the investigation is complete. There is no ETA at this time. We have the choice to go with another manufacture like Cochlear, however we are very happy with our current device and don't want to mess with the complication of trying to get 2 completely different devices to work together. In addition, I don't want the added baggage related to packing 2 completely separate battery packs and chargers. We have enough stuff to pack already. One setback after the next - this totally stinks!

Learned Helplessness

2010-12-06T21:17:00.002-06:00

We actually seen several doctors and therapists last Wednesday. We attend a CP clinic about once every 6 months. At this clinic, they bring in a Neurologist, PT, OT, Orthopedic Doctor, Social Worker, Nurse, Nutritionist, Dental Hygienist, Orthotist, and someone who can make adjustments to equipment like wheelchairs.

In my last post, I mentioned Carver's appointment with the Neurologist. Kinnick doesn't really need to see the Neurologist. She seems to be doing just fine - other then delays related to her lack of breath support, lack of vision, and hypotonia. However, even with her hypotonia, she's doing quite well. She's just very weak. The PT suggested some exercises to help strengthen Kinnick's legs - mostly squat type exercises and walking up/down stairs. She also mentioned getting Kinnick a balancing board. So, we added that to the Christmas list.

The PT made some suggestions for stretching Carver. I asked if she thought that Carver was "as far as he's going to go physically". The reason that I asked is because we put him in a sitting position every day and work so hard to teach him to sit independently, but he just can't do it. She told me that she believed he could and would do it. She believes that Carver has "Learned Helplessness". What's that? Well, we treat Carver like he is 3-6 months old. We always watch his head, and we never let him tip over or fall. We guard him at all times when working with him. She suggested letting him suffer some consequences for his actions. Sounds terrible, but I think she has a point. She didn't suggest letting him really hurt himself. Instead, she said to practice putting him in a sitting position while on a soft mat. Or, when there are soft pillows around him. Then, instead of guarding him and catching him every time he leans to one side or tips over, let him fall. This will teach him that there are consequences for his actions and he shouldn't do that. By always catching him and guarding him, we have taught him that he doesn't have to do anything, we'll always be there and help him, and he has no idea that there are really consequences for his actions. We're going to give it a try and see how it works.

We got Carver's wheelchair adjusted just in case he is ready to go to school in March. We didn't bother getting Kinnick's adjusted because she's doing so good with her walking and for distances, the school can put her in a wagon.

Tomorrow, we see the Pulmonologist and Carver gets to try out the new Auditory Conditioning System.

Botox and more

2010-12-05T19:31:00.002-06:00

We seen Carver's Neurologist last Wednesday. Carver's spasticity in his legs isn't getting better with neurontin, anymore. We tried baclofen prior to neurontin and it didn't work, either. So, the Neurologist has finally agreed to do Botox. Botox (neurotoxin) works in the muscle where it is injected by blocking signals that tell the muscle to contract. Hopefully this will help relax the muscles in Carver's legs and allow his legs to be more functional. The doctor agreed to do injections in Carver's adductors and his hamstrings. Carver also has quite a bit of spasticity in his lower back and right arm. However, due to Carver's size (dosage limitations), the doctor is only able to treat the most needed areas. Carver will continue to take neurontin to help with the other areas.

Carver is really starting to come alive with his Cochlear Implants. It's becoming more obvious that he is not only paying attention to sounds, but learning their meaning. He's also starting to use the little bit of vision in his left eye. Carver is so mobile now - rolling on the floor. He used to stay in the great room and only rolled around in a very defined area. Now, he's rolling into the Kitchen and halls. Sometimes, I walk into the great room and have no idea where's he gone. It's not hard to find him, but always a shock. He loves going to the changing table where we keep a plastic mat. He lays on the plastic mat and scratches it. I think he likes the way it sounds. He has the path to the mat memorized, and can roll straight there without getting lost along the way. He can roll right and left, but prefers to roll to the left. I believe this is due to the fact that he only has vision in his left eye (rolling to the right would be like rolling blindly), and the fact that his left arm has more function then the right. He uses the right arm to push himself over his left shoulder. If he gets in a position (hits a wall or object) and can't roll to the left, he will lift both legs in the air (above the wall or object) and drop his legs to the other side of his body, then push off and continue rolling to the left until he gets to his destination. I've even seen him go back-n-forth between the plastic mat in the kitchen and the great room. When her returns to the great room, he is typically looking for a toy to play with. He doesn't stop until he finds the toy. It's such a pleasant surprise to suddenly hear one of Carver's toys playing music, and to see that Carver has moved to the great room and he's the one playing with the toy - no help from anyone. If he accidentally turns the toy to the off position, he cries and yells until someone turns the toy back to the on position. I'm not sure if this is because he wants to hear the toy, or if he wants to see the lights that light up when the toy is on. Either way, I'm trilled that he notices.

We're still waiting on insurance approval for Carver right CI surgery. So, it's not looking like he'll be activated by Christmas.

Carver has done very well without oxygen at night. I've only had to use it a few nights with colds.

We applied for family support funding through the MRDD waiver. This funding comes up once a year and is typically how we fund Kinnick and Carver's needed equipment. Due to cutbacks, we didn't qualify for funding this year. They excluded anyone that was receiving any kind of funding (regardless of type of funding) from another waiver program. We receive a medicaid card for Kinnick and Carver which provides nursing in the home via the Technology Asisted waiver. Therefore, we didn't qualify this year. We only requested funding for a replacement highchair for Carver. Kinnick and Carver are still using the baby highchair for meals. Kinnick is capable of sitting in a regular chair, but Carver requires full support. So, we're needing a special chair for feeds. Fortunately, my private insurance (BCBS) has agreed to pay for the seat. I didn't think they would pay for it, so we were surprised when they approved the request. Carver should receive his new highchair before the end of year. We ordered a Special Tomato Mobile Positioning System. These cost around $3,000, so hopefully it will accommodate for several years.

I still have lots to talk about, but I'll save it for another post. This post is getting rather long.

Merry Muscles

2010-11-27T19:48:00.004-06:00

A few days ago, I posted a couple of videos of Kinnick and Carver in a baby Johnny Jump-Up. They both LOVED it. However, they're really too big for it. The max weight is 24 lbs and it doesn't offer much support. After posting, a lady that follows my blog commented about "Merry Muscles". Merry Muscles is a special needs Johnny Jump-Up. The small size goes up to 40 lbs. We ordered the medium size (pictured below). I'm not sure how much weight it holds, but surely it can be used a long time. We're excited to get it. We should have it for Christmas.

Here's a picture from the Merry Muscles website....

Can't wait! Oh, and btw.... if you can't get your child to jump..... this will do the trick!

Auditory Conditioning System for Carver

2010-11-26T18:46:00.002-06:00

The training protocol for Carver's auditory conditioning system is almost ready. We meet with Kat on December 7th to try out the actual auditory conditioning system for Carver. The lady (Kate) who wrote the protocol is also going to join us to see her experiment unfold. The Blind/Deaf with Cochlear Implants Project was kind enough to write an additional grant to provide funding that will allow the team to develop a tool that will help us get Carver "booth test ready". What does this mean? Carver is Blind/Deaf and has CP. These 3 things really make it difficult for Carver to respond to the standard hearing booth tests that typical deaf children use to determine the correct CI mappings. This auditory conditioning system will be set up on the computer to allow us to track Carver's progress with accuracy. The program will present Carver with different sounds (similar to the sounds that would be presented during a booth test). Carver will use switches to indicate whether he heard a sound or not. An interrupter switch will be used to exclude instances where Carver was "playing" with the switch vs responding to a sound when it is presented. The hope is that we can condition Carver, so that this system can be used to map his CI's in a booth test. If it is a success, it could be used to help other children like Carver. To date, all of Carver's CI mappings have been based on NRI responses - basically, the computer is telling the Audiologist how to map Carver based on how the nerves respond to sounds sent through the CI from the computer. While this gets us in the ball park, it isn't the best possible mapping for Carver. A lot of people have been involved to help make this a success. We're excited to be a part of the experiment, and are very hopeful that this will be a success. Wish us luck!

Still working on jumping....

2010-11-22T21:54:00.001-06:00

Kinnick Jumping....

Carver Jumping....

Feeding

2010-11-11T21:29:00.002-06:00

So, today our SLP and OT came to observe Kinnick and Carver's feeding routines. After observing, they came up with some new things to try.

The following is what our SLP and OT observed, and what they would like to try as far as swallowing goes:

Kinnick:
1) Breathing. Kinnick has limited respiratory intake and output. Therefore, she needs time to catch her breath after she swallows. Sometimes she needs to swallow a couple of times before she is ready for another bite. I (SLP) think she gets stressed out, then her breathing quickens, then she has to swallow, then catch her breath, and be ready for the next bite. This could cause her to stress out even more, choke, and then refuse, and she's back to square one. During lunch, Nurse Marci did a great job making Kinnick feel safe and comfortable. We (SLP and OT) allowed Kinnick to "wait" for a little bit before the next bite. I (SLP) also cued her to say "wait", which she is still learning to do. At one point, she asked for "more"! :) We (SLP and OT) also let her know when the bite was coming ("Here comes a bite, Kinnick). Kinnick typically closes her lips when she swallows.

2) Limiting oral intake to 30 minutes. Mom and Marci already do this, but I (SLP) wanted to be sure you knew why the limit is 30 minutes, especially for Kinnick. Eating takes lots of energy, b/c of coordinating chewing (or movement of the food to the back of the mouth), swallowing and breathing. Kinnick's breathing is still effortful. If oral intake goes over 30 minutes, the food Kinnick is eating will be used up as energy for eating only.

3) We (SLP and OT) noticed she is not drinking her milk. It could be the flavor. Nurse Marci said Kinnick is drinking or learning to drink from a sippy cup and that Kinnick also likes juice. Kelly (OT) and I (SLP) are excited for her to learn to drink from the sippy cup on her own, then move on to a cup. Go, Kinnick!

4)We (SLP and OT) worked on appropriate refusal ("no, thanks"), rather than screaming.

5) At the feeding conference Kelly (OT) and I (SLP) went to, we learned that kiddos with texture/flavor aversions are given a variety of flavors through their g-tube. The logic is that when gas is burped from the stomach, it can be tasted. Sounds gross, I (SLPL) know, but this is a way for Kinnick and Carver to try something new without it being too offensive. Of course, Kelly (OT) and I (SLP) would NEVER try this without your explicit permission. This was just an idea we were tossing around. We (SLP and OT) will also continue to orally introduce new flavors and textures.

6) We (SLP and OT) are going to work on more oral stim with Kinnick to help with toothbrushing.

I (SLP) am very pleased that she did not demonstrate great discomfort/aversion during mealtime, and was very willing to continue with therapy. Way to go, Kinnick!

Carver:
1) What an awesome little man! You have done a fabulous job of teaching him how to use a spoon! Kelly (OT) and I (SLP) are excited for him to learn to feed himself!

2)We (SLP and OT) are looking at helping Carver close his lips around the spoon, rather than the spoon scraping the food off of the roof of his mouth.

3)He is enjoying lumpier textures which is great. We are still encouraging oral stim with a nuk brush and z-vibe (basically, a rubber tipped vibrating stick) to help with tooth brushing and chewing. Because of his tonic bite, he may need support for chewing and I (SLP) am currently looking into this. Kelly (OT) and I (SLP) would also like to vary his flavors orally.

4) I (SLP) would like oral stim with a nuk brush to take place at home. This could only take about 2 minutes out of his day, if Mom and the rest of the team are ok with that. If Mom would like, I (SLP) would be happy to demonstrate or show you, Nurse Marci and anyone else, how we (SLP and OT) do this.

5)Just like you all encouraged "pretend eating" with the spoon, I (SLP) would like to encourage "pretend drinking" with a cup (for both Carver and Kinnick). This will help them be aware of the corners of their mouth, the tip of their tongue, etc.

Got the "All Clear" to re-implant the Right CI

2010-11-04T21:57:00.002-05:00

Carver's Doctor called to inform me that Carver's CT scan came back with good results. He gave us the "All Clear" to re-implant Carver's Right CI. Now, we're waiting on Insurance approval.

Halloween 2010

2010-10-31T21:08:00.004-05:00

This is the first year that we've taken Kinnick and Carver out trick-or-treating.

This year, Kinnick and Carver were Thing 1 and Thing 2. Big brother Hayden went as the Cat-in-the-hat. Their costumes were perfect for the weather. It was a bit chilly, but not too bad.

Kinnick and Carver weren't thrilled with the blue wigs - even though I searched forever for the perfect blue wigs :o). They seemed much happier with the wigs off.

We only went to a few houses for fun. Kinnick even walked up to the houses with her pumpkin and tried to say trick-or-treat. It came out as "treat". We put a light in her pumpkin, so that she would want to carry the pumpkin (she liked the light).

Kinnick wasn't excited about the candy, at all. She won't even taste candy. The best part of trick-or-treating for Kinnick and Carver was getting to go outside for a walk. For me, it was eating the candy that Kinnick and Carver didn't want.

By the end of the evening, the kids were just exhausted.

Applejack Pumpkin Patch

2010-10-30T20:23:00.004-05:00

Today was a beautiful day. The temperature was in the upper 70's. Nurse Marci and I spent all day at the Applejack Pumpkin Patch with my 3 little ones, Kinnick, Carver, and big brother Hayden. For $6/person each of us got our own pumpkin and all of the fun that we could squeeze in during our visit.

Nurse Marci is such a trooper. Here she is sitting in the back of the bus with the kids.

Kinnick and big brother Hayden...

Carver and big brother Hayden...

Kinnick tried out the tire swing.

Hayden absolutely LOVED the zip line. I can't tell you how many times he had to ride.

After a while, big brother Hayden perfected his landing. He did a pretty good job for a 5 year old.

Hayden crawled through the tires.

Everyone took turns on the big slide. This is a picture of Nurse Marci and Carver going down the big slide.

Kinnick enjoyed the smaller slide...until she fell on her bottom. She doesn't have much padding back there, so she wasn't very happy after the fall.

We took a wagon ride to the actual Pumpkin patch.

Kinnick taking a break on a Pumpkin.

Carver really liked the corn box. Kinnick wasn't quite as impressed.

The Applejack Pumpkin Patch had something for everyone. I only showed pictures of about 1/2 of what they have to do. They have lots of good food like funnel cakes, slushies, cheeseburgers, hot dogs, nachos, etc... They have animals, shooting sports, tricycle racing, duck racing, playground equipment, and I'm sure I've missed naming several things. The Applejack Pumpkin Patch will definitely be on our list again next year. We had a great time.

A visit from Grandpa Woolley

2010-10-25T20:43:00.002-05:00

Grandpa Woolley came to visit this past weekend. It's always nice to see Grandpa Woolley. He's a great guest and we always hate to see him go. In just a few short days, he did so much for us. He treats us like the guests.

On Thursday, he scraped, primed, and painted the trim around the garage. Then he cooked fresh fish that he caught fishing in MI.

On Friday he made stuffed bell peppers and rice and he fixed a light switch that had a short in it. He also spent forever pushing Kinnick on her tricycle.

On Saturday, he squeezed in time to see Gage's Football game before hitting the road.

Oh, and then there were the endless piles of books that Kinnick talked him into reading.

Let's not forget to mention the abuse he took while playing with Hayden and the nurf guns, the time he spent with Carver, and the time he gave Gregory looking at trains.

Everyone enjoyed Grandpa Woolley's visit. We hope to see him again soon. Thanks for the good times, Bob Sr.

Skeleton Bones

2010-10-25T20:38:00.002-05:00

Kinnick and Carver got the cutest PJ's for Halloween....

My little Skeleton Bones...

Busted wearing Dad's shoes....

Carver taking his Pony for a spin

2010-10-20T19:57:00.002-05:00

I was able to capture Carver taking his Pony for a spin on the deck...

Carver is really making some good efforts in his Pony. Obviously he has a lot of work ahead of him, but I think he's off to a good start.

Another good note...

We met with Carver's ENT today, they are ready to re-implant his right Cochlear Implant. We go for a CT scan next Thursday. If all goes well, we will schedule his surgery! Maybe we'll have 2 ears by Christmas!

A new Pony for Carver

2010-10-17T17:21:00.004-05:00

Last year, we got a size 1 pony through MRDD funding. A size 1 pony typically fits an age 3-6 year old. Carver was a little older then 2 1/2, so it made since at that time to get the size 1. We knew it would be too big for a short while, but figured that he would be able to use it within 6 months. Well, here we are a year later and he's still too small for the size 1 pony. He's grown, but all of the length has been in his torso - not his legs. So, he's still 2 inches too short for the size 1 pony.

I've been looking for a size 0 pony to borrow for quite some time, but haven't had any luck finding one. Finally, I was on Ebay and found one for sale. I was able to purchase a size 0 pony for $525. This is a great buy - these things cost around $3,000 new. So much for paying off the credit card :o). The size 0 pony came FedEx yesterday afternoon. I tore into it like a Christmas package. I was so excited to finally get something that would allow Carver to be mobile in an upright position.

Carver is still learning how to use the pony, but he has had a few good "runs" in it since we got it yesterday.

This picture shows how much work it is for Carver to coordinate the movements to walk in the pony AND hold his head up at the same time.

In this picture, he has discovered that he is moving the pony.

Here, it gets a little easier to move the pony.

And here, he decided to throw his hands in the air and run in the pony.

Beck's Farm - In search of Pumpkins

2010-10-16T19:16:00.004-05:00

I was off work on Friday, so Nurse Marci, Kinnick, Carver and me all went to Beck's Farm in search of Pumpkins.

Kinnick didn't care for the hay, so anytime we sat her on the hay she got upset. For whatever reason, Carver was refusing to lift his head, so this is the best picture we could get together.

Kinnick checking out the pumpkins. So many to pick from.

This seat was much better then the hay.

Darn hay ruined another picture.

October 14th, 2010

2010-10-14T19:14:00.002-05:00

Kinnick enjoyed some fun outside today while Carver was at his AVT appointment. She LOVES to play outside - it doesn't matter how cold or how hot it is outside. Right now, the weather is perfect. So, Kinnick got to spend some time practicing with her mobility device.

Here is a picture of Kinnick correcting her mobility device (pre-cane). She knows when she runs into the grass that she needs to move the mobility device.

Here she is all "Independent". Showing us how it is done. Amazing!

October 13th, 2010

2010-10-13T19:28:00.003-05:00

Today, Carver received a new Tumble Forms chair - compliments of the Deaf/Blind Funding. This is such a cool chair. It comes in several pieces that allow you to put the chair in all sorts of positions.

This is a picture of Carver working on sitting with his PT.

Tonight, I was playing with the chair and created a cute little recliner. Carver sat really good in it for a few minutes. It was the perfect height for him. His feet hit the ground with his knees at a 90% angle. So cute! What a handsome little guy.

Out to eat - always entertaining

2010-10-12T19:19:00.003-05:00

Today, we decided to go out for a bite to eat at one of my favorite restaurants (On the Border).

This is how the outing went....

Kinnick decided that she was finished coloring, so the blue crayon (flying through the air) lands in our chips.

Kinnick became bored with her menu, so she quickly pushed it off the table onto the floor.

FYI... for those of you that didn't know, you can request braille menus at restaurants. This helps keep the kids occupied - too bad we didn't request one today.

Carver, was a good little boy and enjoyed trying to see the crayola crayon colors.

October 7th, 2010

2010-10-07T20:58:00.002-05:00

Kinnick loves her books. One of her books that she received from Seedling Braille Books via the "Book Angel Program" has animals and their sounds. She has learned to say all of the animal sounds in the book.

Here is a video of her saying all of the animal sounds. You really have to turn the volume up to hear her on the video. She's still pretty quiet.

September 30th, 2010

2010-09-30T19:26:00.002-05:00

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.

September 29th, 2010

2010-09-29T20:33:00.003-05:00

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.

September 28th, 2010

2010-09-28T21:35:00.003-05:00

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.

Potty Training Miss Kinnick

2010-09-26T21:48:00.002-05:00

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.

A year older for four

2010-09-26T21:35:00.003-05:00

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.

AB Kinder Clip

2010-09-24T21:20:00.004-05:00

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!

2010-09-22T19:01:00.002-05:00

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?!?!?

Happy Birthday Big Brother, Hayden

2010-09-21T19:37:00.003-05:00

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.

Early Mobility Device

2010-09-16T20:51:00.003-05:00

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 "corn popper".

Kinnick and her new "Early Mobility Device".

Thing 1 and Thing 2

2010-09-15T20:01:00.002-05:00

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.

New Cascade DAFO's for Carver

2010-09-02T20:07:00.003-05:00

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.

September 1st, 2010

2010-09-01T20:22:00.003-05:00

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.

Holy Crap! Kinnick knows her Colors!!

2010-08-31T18:58:00.006-05:00

Kinnick is legally Blind due to ROP (Retinopathy of Prematurity). She has no Iris, no lens and her retinas are mostly detached with fluid under the retinas. We were told by more then one doctor that Kinnick would not/could not see in Color. Well guess what???? They were wrong.

Listen to my little blind girl tell us the Color of all of her light box bowls.....

She got every Color right! I'm so proud of her. I'm about to split at the seams!

August 28th, 2010

2010-08-29T12:31:00.003-05:00

We arrived safely at home tonight around 5:00 pm CST. We had a great time, but we're all exhausted.

Henson Robinson Zoo, Springfield, IL

2010-08-29T12:11:00.004-05:00

After all of the fun at Jolly Orchard, we headed to Candlewood Suites in Springfield, IL. This was about 4 1/2 hours from Jolly Orchard in Watervliet, MI. We arrived in Springfield, IL around 3:30 pm. We had a little time to kill, so we headed to the Henson Robinson Zoo. The Zoo honored our Sedgwick County Zoo pass, so it was free. Can't pass that deal up.

The Zoo was really small. Not many animals - mostly birds. They did have some spider monkeys, penguins, a snake, some goats, a couple bobcats, tortoises, and a wolverine.

We had some fun in the Zoo's gift shop playing with rubber animals and trying on masks.

Carver was a good sport. Kinnick wanted nothing to do with the rubber animals and masks.

August 27th, 2010

2010-08-29T11:54:00.006-05:00

We got up early Friday morning because we wanted to go to a nearby Orchard before hitting the road. Jolly Orchard was about 2 miles from our hotel. You could pick your own fruit. They were currently allowing you to pick red raspberries and apples. There was a play area at the orchards that would be nice for most kiddos. We didn't go into the play area. I think there was a slight charge and we really didn't see much for Kinnick and Carver.

We stopped to take pictures of our little "vegetables"....

Kinnick the watermelon head.

Carver in the corn.

Then it was off to pick apples and berries...

We ended up with so much fruit, we weren't sure what we were going to do with all of it. We bought plums, apples, pears, nectarines, red raspberries, and tomatoes.

That evening, we found something to do with the red raspberries.....

Yum! Yum!

August 26th, 2010

2010-08-29T11:28:00.004-05:00

We hit the road early Thursday morning. We had decided to try out an indoor water park at a hotel off the highway on our way home. The hotel was about 3 1/2 hours from Troy, MI in a town called Watervliet, MI. The indoor water park was called Surfari Joes. On the way to the hotel, we stopped at some chocolate shops to get truffles, fudge, and toffee. Our eyes were bigger then our stomachs. We ate so much chocolate that we about made ourselves sick (me and Nurse Marci).

I was really excited about the water park. They had a small shallow play area and a lazy river. I thought this would be perfect for Kinnick and Carver. We put our swimsuits on right away and headed down to the water park. I ended up being really disappointed. The shallow play area was really close to the jungle gym play area for small children. There was a huge bucket of water at the top of the jungle gym that would dump whenever it filled up. When it dumped, it splashed (poured) all over the play area. You were lucky if you didn't get flooded. The water was cold and Kinnick and Carver were turning purple. So, we decided to float down the lazy river. We got our tubes and climbed into the lazy river. Well, it wasn't a very "lazy" river. The river went very fast. This wasn't really a problem. The problem was that big kids and ADULTS were swimming in the lazy river - basically letting the river push them along. They would run into our tubes, pushing us into the walls (the river was barely wider then our tubes). The people were rude and acted like we were in the way on the tubes. I was afraid that some of the smaller children were going to get lodged between a tube and the side walls and drown. The staff didn't seem to care that this was going on, so we just bailed on the water park.

We went back to the room, cleaned up and headed to Silver Beach. The beach was great. There was a nice play area and tons of sidewalk to walk around the area. We had a great time, and it was minutes from our hotel (15 min).

Kinnick walking in the sand.

Carver sinking his toes in the sand.

The play area on the beach.

Kinnick and Carver on the Pier.

August 25th, 2010

2010-08-29T10:56:00.006-05:00

The drive to Royal Oak, MI is always long. We headed out on Monday, August 23rd. We drove to Springfield, IL and stayed at our favorite Candlewood Suites hotel. They have everything we need for an overnight stay - Fridge, microwave, plenty of table/chair space, and washer/dryers.

We got to try out Carver's new Special Tomatoe seat - attached to a regular chair. It worked out great.

We got up early Tuesday morning and finished our drive to Troy, MI. We stayed at our usual Candlewood Suites. The EUA's were scheduled for 6:30 am (5:30 am CST) on Wednesday, August 25th. We were tired after 2 days of driving, but managed to get up on time. Kinnick's eyes didn't show any change. Carver's eyes didn't show any change except the sponge that was previously placed behind his left eye had come loose. Dr. Drenser removed the sponge. This just required a small incision in the eye. The Dr. gave us some ointment to put in the eye to help any discomfort. Carver handled the surgery with no problems, and has recovered just fine. He was happy the entire trip. Dr. Drenser talked to us about some things that are in the works and waiting for approval. One is a retinal chip that could be placed in the eye and would work similar to Carver's Cochlear Implant, but would be for vision. The other was a laser surgery - similar to the old PRK (prior to LASIK). This would alter the cornea so that contact lenses wouldn't be necessary for a child that has had their lens removed. This would take the place of contact lenses and would offer constant "best possible" vision at all times. No more losing contacts and torturing your child putting contact lenses in their eyes. There is still a lot of controversy over this method - similar to making kids wait until age 18 to get LASIK. Hopefully we'll hear more about this at our next visit. I asked the Dr, "What can Kinnick and Carver see with the condition of their eyes". Her answer was, "We just don't know". If an adult had a retinal detachment, he/she would lose complete vision very quickly - including any light perception. However, when small children have retinal detachment, they could have light perception for decades. Therefore, there is something very different about the timing of the retinal detachment and eye/brain development. So, until Kinnick or Carver can tell us exactly what they see, we just won't know.

After surgery on Wednesday, we went back to our room and cleaned up. Then, we met the Larson's (Conner's family) for lunch at their house - about 20 min from the hotel. It was a really nice visit. Kinnick loved having another "little people" to play with. She kept wanting to hug Conner and tell us where his ears are eyes were located. It was really cute. We hated to leave, but the Larson's had a back-to-school event to attend that evening.

Headed back to Michigan for EUA's to check the eyes

2010-08-22T21:04:00.002-05:00

We leave for Michigan first thing tomorrow morning. Kinnick and Carver have another EUA to check the status of their eyes. As always, we're hopeful that surgery will not be necessary, but we never know until the doctor is able to get a good look at their eyes.

I'm excited to see some of our micro preemie friends and family. I think that's the best part of going back to Michigan.

On the way home, we're planning a stop at Surfari Joe's Indoor Water park in Watervliet, MI. This is a hotel with an indoor water park - similar to the Great Wolf Lodge. You get a room for the night, with 2 queen sized beds, 4 passes to their indoor water park, and breakfast for $99. We'll be staying the night of the 26th. If anyone is nearby or wants to make the trip, we would love to see you there! I won't have my computer, but I'll have my iphone, so just send me an email. My email address is at the left hand side of my blog.

Seedlings Braille Book Angel Program

2010-08-20T19:53:00.002-05:00

I recently registered Kinnick and Carver for the Seedlings Braille Book Angel Program (see link in the "Resources" section of my blog). Today, we received (4) new Braille books. The program gives (2) free Braille books/per year to blind or visually impaired children.

Kinnick and Carver love their new books. Thank you Seedlings.org for your generous donation.

Auditory Training

2010-08-19T20:12:00.002-05:00

We're trying to get Carver ready for booth testing. Right now, his CI's are programed based on NRI's (Neural Response Images). A computer is hooked up to Carver's CI and sends electronic signals that report back the neural responses. Then, his CI is programmed based on those responses. While this gets Carver's CI's (hearing) mapped within reasonable limits, it's not necessarily the best map for him. Most kids are able to tell you what they can/can't hear. If they can't tell you verbally, they can push a button or device to indicate they heard something. Carver's disabilities make this difficult. He can't see and his CP makes good hand/arm movements difficult. We've been working hard to teach him to hit a button when he hears something. However, we can't find a button that works. He loves to hear what the button sounds like, so he just grabs the button and keeps pushing it. Kat (with the deaf/blind with CI's project/grant) has been trying to find an interrupter switch that will prevent the button from working unless a sound has been presented first. This week, she met with the KU (University of Kansas) behavioral research scientists, and they think that a program can be generated on a computer to accomplish this. The computer/program would control the switch, eliminate human non-errors, and record all of the test results. Kat also met with the programmers, showed them a video of Carver and his difficulties in order to help them understand our challenge. The programmers were so excited, that they are thinking about writing a grant as this has to be a problem/challenge for many kids who can't respond easily to auditory training. Therefore, if they are able to write a program that works for Carver, it may also work for other children just like Carver - placing them one step closer to better hearing. What a deal! This group truly wants to help these kids and wants to see them succeed. We are so thankful to have been hooked up with this project. Thank you, Kat! We really appreciate all of your efforts and the efforts of the entire project/grant team.

Bumper Guards for a tray - just $4.04

2010-08-14T19:04:00.005-05:00

A few weeks ago, we searched the web and magazines looking for something that would help hold the toys on Carver's tray. We came across a neat bumper guard that strapped around the tray. Well, they wanted almost $200 for it. So, we came up with our own bumper guard - one nicely cut "Pool Noodle" - just $4.04 at your local Target! It works great! We just slit the tube down one side and slid it on each side of the tray.

Check it out....

Carver's New Special Tomatoe Floor Sitter

2010-08-12T19:15:00.003-05:00

Finding good seating for someone that needs lots of support is difficult. Carver received $250 from the Deaf/Blind with Cochlear Implants project last week. This is the fabulous project/grant that Carver is hooked up with. We used the money to buy a new Special Tomatoe Floor Sitter, and we LOVE it. It really fits him nicely and holds him in place. The total cost was only $291. We bought it from adaptivemall.com. Right now they have a 5% discount going on the Special Tomatoe products (Coupon Code 5PERCST).

August 9th, 2010

2010-08-09T21:24:00.002-05:00

Carver has a sleep study again tonight. It seems really odd being home without him. Bob agreed to stay overnight at the sleep center with him. Now, I'm sitting here kicking myself because I can't stand not knowing what is going on. Hopefully, he will have an awesome night and we can try to take him off oxygen at night. Either way, I sure miss my cute little guy.

So, what did we do tonight without the husband and the little man? We watched the bachelor pad. I'm addicted to all of the bachelorette and bachelor shows. I can't to see who wins the $250,000 in the end.

August 4th, 2010

2010-08-04T20:54:00.002-05:00

Carver was fitted for new DAFO's yesterday. Thank God! I absolutely hate his AFO's. Every since we got his AFO's, they've been a pain. When we got the AFO's, they put an articulator in the heel of them. Well, Carver has so much tone, he just pushes his heel out of place - making the AFO's worthless. Now, his ankles are tight. So, back to plain old DAFO's. We loved our DAFO's. We NEVER had a problem keeping them on correctly. In fact, Carver did so well in his original DAFO's, they wanted to give him the articulators. This is kind of a step up. This is when the Orthapedic doctor moved him to AFO's. Carver's Orthapedic doctor doesn't like DAFO's, so we had to work around her to get them again. We just asked to find our own supplier - instead of using hers. I can't wait to get them. They should arrive in a couple of weeks.

Carver seen his ENT today. So far, so good. The infection seems to be clearing up - if not gone. We see the ENT again in 4-6 wks. Hopefully then, we'll talk about surgery to put the right CI back in.

Other then this, we're preparing for school to start again (home bound), and preparing for our trip back to MI to see the eye specialist.