December 28th, 2011

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....

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!!

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

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

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

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

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

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

September 25th, 2011

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

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...

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

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

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

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!"

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

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

Kinnick can count to 10!

Excellence Resort and Spa - Riviera Maya, Mexico

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

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!