December 30th, 2009

It seems like we waited forever for Carver to get a Pony Gait Trainer. Then it came, and he was a couple of inches too short to use it. Well, check out his moon shoes :o)

It's going to take him a while to figure things out, but he's able to move it. He's even moving left foot/right foot. I think he likes it.

I love seeing him up and mobile. I can't wait to see how he does over the next couple of months. Way to go Carver! I love you soooo much!

December 27th, 2009

Despite the fact that Carver's seroma continues to show it's ugly head, he is doing very well. I love that we are trying new things with Carver besides trying to get him to say something. I mean, let's face it.... Do we expect our newborns to repeat what we say at a couple weeks old? No, so we shouldn't expect a child who receives a CI to repeat words quickly. We've taken a step back and are working on prelinguistic communication. This would be similar to signing or using gestures to communicate. For example, when a child wants something, but he can't tell you - he will stand, grunt, and point at something. When you ask the child to give you something, they show that they hear you and understand by giving you the object. So, instead of expecting Carver to say something, we are expecting a response to our questions/commands. If he wants something, we expect some sort of gesture. Already, I can tell Carver to "Give me five, five, five", Carver will lift his hand and hit my hand 3 times. If he misses my hand, I show him where my hand is by helping him hit my hand. It's the best thing in the world. I know that he understands me and he is responding. Similarly, if I pull a pop tube open/shut (giving him a sound clue of what I have), and then say, "Do you want to get it?", He will reach out and grab the pop tube. We then raise it up/down to the count of three - one, two, three, then we pull the pop tube open. He helps raise it up/down as we count to three and laughs when we pull it open. He's also doing so good at meal time. Before every bite, we say, "Bite, Carver?", and he opens his mouth really big for the bite. I know this may not sound big, but to me it's huge and it feels really good. I'm so proud of my little guy.

December 25th, 2009

We had a nice Christmas with all of the kids. Everyone was up early and ready to open gifts. I thought I would share some of the fun.

Wow, all of these are for me? Where should I begin?

Thank you Grandma Woolley for the yearly Hawkeye ornament.

Carver got a new hammer that makes noise and lights up when you bang it.

Rainbows has been lending us some really neat books. We have to return the books in March. So, with help from Grandpa Woolley and Pat, we were able to purchase 3 of the favorites - That's not my Bear, Something Special, and Geraldine's Blanket. Thank you Grandpa Woolley and Pat.

Kinnick and Carver will be 3 in March. You know what that means....Kinnick has no idea what kind of seat she is sitting on.

Carver got a new toy that we can push up to his big Bumbo seat. It has lots of lights and noises.

Kinnick got a new shopping cart - they start shopping young these days.

Big brother, Hayden wanted to show off his new WII game - Star Wars Clone Wars.

Big brother, Gage wanted to show off his new Ipod Nano.

Big brother, Harrison wanted to show off his new PSP. He got one last year for Christmas and someone stole it at school - bummer.

Big brother, Gregory loves trains and wanted to show off his new LEGO train.

Big sister, Kirsten is finishing her 2nd year of college. She applied to Dental Hygiene school and we are hoping she is accepted. 125 - 150 apply and only 40 are accepted each year. We got her a bigger book bag to carry all of her medical books.

All in all we had a very nice Christmas. Now we need to find room for all of new toys and gifts.

I hope everyone had a very wonderful Christmas!

A little Pre-Christmas Gift Opening

Kinnick and Carver are blessed to have 3 very caring nurses. I don't know how we got so lucky, but we did. The gifts from the nurses just kept piling up, so we decided it was time to open them.

Wow! I wonder what's in this box.

Let me introduce you to Mr. Jangles. Thank you Nurse Jane. Mr. Jangles is super cool!

Wow, a book that sings and talks to me. Thank you Nurse Jane.

We got a kick out of Carver when we put his new Hat and Mittens on. He didn't know what to think of them. He just kept banging his hand. Thank you Grandma Gray (Nurse Marci's mom). And, thank you for the cute purple monkey!

Here's Kinnick with her new Hat and Mittens. Thank you Grandma Gray! And, thank you for the cute pink monkey.

Wow, another one for me?

Thank you Nurse Marci for the cool Barnyard friends. I love all of the sounds the animals make. And, thank you for all of the cool clothes. We're going to need another dresser.

How about these cool boots? Thank you Nurse Marci for keeping me so "Hip". And, thank you for the cute outfit to go with my new boots. I can't wait to wear them.

The list doesn't stop here. Nurse Tracy got to come one more day to see Kinnick and Carver. She gave Kinnick and Carver the best Color Explosion Glow Board. You write on the board with markers that glow in the dark. As you know, K&C can only see lights and shadows, so this is a neat way to color and still see something. Great idea! We love it. She also gave them more music, a book, a rattle, and another vibrating teether for Carver.

Thank you all! We are so blessed to have such wonderful nurses.

December 24th, 2009

I thought I would post a picture of Carver using Kinnick's KidCart. It looks a lot like a stroller with attachments for support. Carver is able to sit up in the KidCart where he is unable to sit in a normal stroller. The KidCart also tilts if they can't hold their own head. I really don't think that Kinnick is going to need this long. I have a feeling that Carver will get more use out of it then her. He is getting a tilt-in-space wheel chair that looks more like a wheel chair. The difference is the weight of the tilt-in-space vs the KidCart. Also, I think the tilt-in-space grows a little better with the child (can be adjusted as he grows). You can adjust the KidCart, too. However, it just starts to look a little odd when they are bigger. The tilt-in-space is very heavy. We'll probably use it for school and around the house. The KidCart can be put in the back of the vehicle easier then the tilt-in-space. Insurance only pays for 1 wheelchair every 5 years, so it's difficult to pick one that will work now and for 5 years with a growing changing child.

This picture was taken at the doctor's office the other day.

December 18th, 2009

It seems like the appointments never end....

K&C both had EUA's to check the pressure in their eyes. Carver's is in normal range. He has scar tissue blocking nearly all of his pupil. This prevents light from getting into his eye - leaving him without much vision at all. He is scheduled to have this removed 1/5/2010 by a doctor here in town. Kinnick's eye pressure continues to be too high despite the added eye drops. She will require another specialized eye surgery that has to be done in MI. We're trying to get the MI eye appointments scheduled. It's always a bunch of work to get everything booked. Lots of insurance approvals and travel arrangements.

I can't remember if I posted about Kinnick's PH Probe study, or not. She had over 100 episodes of non-acid reflux incidents. They believe this is what's causing the lung infections. We're scheduled to see the GI doctor the first week of January.

K&C got their 2nd H1N1 shot today. Kinnick got her 2nd synagis shot on Monday. She's getting old enough to know what the alcohol smell means - I'm not talking about the vodka tonic that I need to assist with the shots - jj.

K&C have nasty colds. They seem to be tolerating them pretty good, but I'm a nervous wreck. I'm always afraid of the worst.

Carver continues to have a large seroma over his second CI. We tried a steroid and an antibiotic. The seroma went down in size, but quickly returned. The doctor said that we could go ahead and use the CI. We're going to just wait for the seroma to dissolve. He said it could take up to 6 months. They could aspirate the fluid, but just sticking it with a needle could introduce infection, and that wouldn't be a good thing. So, instead we'll play the waiting game. However, he has been doing very well with just one CI. We've been using some of Kat's ideas around prelinguistic communication type activities, and he's really catching on. It's very obvious that he knows what we're saying, and he knows when certain items are being presented to him. Kat will be back on 12/28/09 to help with some more activities.

I got Carver's approval for another year of medicaid. I sent in to have Kinnick's approved. This always stresses me out. We have private insurance, but the medicaid is a huge help. Our medical bills are still out of control.

Carver got his Pony gait trainer the other day. He's about an inch too short to use it. I'm going to have to be creative to figure out a way to make it work. I really want him walking in it. We also got Kinnick's wheelchair/stroller. It's a kidcart. I've actually been using it for Carver. We love it. It breaks down very easy. It has trunk support, head support, a seat belt, and a chest support/belt. It also tilts. He was finally able to go to an appointment without laying in his stroller. He was able to sit up and see the world around him. Carver is also getting a wheelchair. His isn't finished, yet. They custom make them. The kidcart is pretty generic, so it doesn't take long to get.

December 15th, 2009

Kinnick and Carver playing together. Kinnick just climbs right up onto Carver's stander and helps herself to Carver's toys. She's able to push the button attached to the bells, while Carver uses the switch that lights up and vibrates. Yes, he's also sampling the harness - he's multi-tasking.

It's amazing the little things in life that we don't think about. Kinnick enjoys feeling the dishwasher while it is running. It's warm and it vibrates. She likes to hold her hand and cheek up against the dishwasher when it is running. She also sits in the laundry room when I'm doing laundry and holds one hand on the washer and one hand on the dryer. She won't leave until I start both of them.

And yes, that's Carver's AFO. Some days we're lucky to find them. For some reason, Kinnick loves to carry around Carver's AFO's.

Oh, and I almost forgot to mention Kinnick's big news..... She is able to stand up in the center of a room now without help!! I'm so proud of her.

December 9th, 2009

Loving the new Stair System.....

BTW... Carver's vest isn't for fashion, it's holding his "Lena". The device that is recording sounds (his and ours) for the study we're involved in for Deaf/Blind with CI's.

December 8th, 2009

We received the new Stair System for Kinnick and Carver. It's soft and can be changed around. There are a couple more mats that go on each side of the tunnel. I left them off to save room. My great room is out of control with equipment and toys.

We're trying to get Kinnick to crawl through the tunnel. We put her favorite snow globe at the end of the tunnel, and away she went - just didn't crawl. Instead, she scooted. It's a start.

She's able to climb both sides of the Stair System. We've also been putting Carver on his knees up against the stairs.

Carver working out on the new Peanut Ball...

We were very fortunate in receiving our equipment this year. The State cut all of the funding off for the year just the other day. Luckily, we had already ordered all of our equipment for the year. We still have a Pony Gait trainer coming and some really cool swings and swing set.

December 6th, 2009

We're getting excited about getting Carver's new Pony Gait Trainer. I can't wait until he has something with enough support to help him learn to walk.

We put Carver in the baby walker. He moves around a little, but his legs cross and get in the way. He seems to enjoy being upright and mobile.

Miss Kinnick is a walking machine. She walks all day long. She falls a lot, but she prefers to walk now vs bum scooting.

Found a Peanut, Found a Peanut, Found a Peanut just now... Kinnick and Carver got a new "Peanut Ball". They both love it. It's just the right size for both of them. This is the new favorite exercise toy. Thank you MRDD Waiver special funding.

December 4th, 2009

We had our "Transition" meeting with Rainbows and the Public school system (USD266) yesterday. We will have to "Transition" from our current Early Intervention group (Rainbows) to the Public school system when Kinnick and Carver turn 3. This was our first meeting and was set up to familiarize the Public school system with K&C needs. It was also an opportunity for us to ask questions about the services that the Public school system has to offer. It has been really nice having Rainbows' therapists come to our home for services. Once we transition into the Public school system, all of our therapy will take place in the classroom. They have class 3hr/day 4 days a week. This doesn't mean that we have to go 4 days a week or even for the full 3hr/day. All of this can be discussed and scheduled based on what's best for K&C. It is possible that the therapists could come to our home if necessary. When I say necessary, I mean medically necessary. Right now, I'm not sure if it is medically necessary. I'm a little concerned about all of the lung issues that Kinnick continues to have and how being in a Public school with many, many children is going to impact her. I understand the need for early intervention, but I can't risk health for the extras that would be offered in the classroom setting. We still have some time to think about things. I really liked several of the teachers and their enthusiasm. I also liked how willing they were to accommodate any and all of K&C's needs. It pretty much sounded like they would make sure they got anything and everything they needed. They also seemed very open to trying the school setting first and if we found that K&C's health begins deteriorating, then we could go to homebound therapy. I was excited to meet the TOD (Teacher of the Deaf). She was very willing to meet with Kat to go over our plan of action for Carver and was willing to share in the opportunities that the Grant has to offer. A couple of the teachers even asked to come to our home to do their evaluation on K&C. Each of the Public school system therapists will have to evaluate K&C to determine frequency of therapy. This is always a fun one for me, because I never feel like we get enough therapy ;O). Overall, I would say that I was pleasantly surprised with the staff and am looking forward to seeing how things go with the first IEP draft.

December 2nd, 2009

We had our big meeting last month with Kat and all of Carver's therapists. We have an action plan in place now to begin working on Carver's Communication and Language Development.

Kat compiled all of the feedback from everyone at the meeting and provided the following initial goals/action plan:

Auditory Perception & Aural Receptive Communication & Language

1. Specific responses to sound play in a social & play interaction

2. Response to environmental sounds in the home

3. Increased vocalizations

4. Increased action on sound-toys

Receptive Communication & Language Targets

1. Use of touch cues/tactile gestures for “names,” directions, choice, greetings

2. Use of objects to “announce” different activities/locations/people

3. Identification of objects that are motivational, used frequently and part of routines.

4. Response to one-concept directions (up, down, bite, bath)

Expressive Communication & Language Targets

1. Increased use of prelinguistic forms and rate of communication ( specifically, extending hand to request object/toy; tapping person to request more interaction, extending object for interaction). Carver currently vocalizes and moves his body to request more. We need to up-the ante so that he is oriented to the other person who is interacting with him and using gestures.

2. Increase rate and type of vocalizations

3. Later – Selecting objects to communicate, paired with vocalizations if possible.

4. Use of communication intents/functions: request more; request, make choices, greetings, offer.

Sensorimotor Targets to Support Communication and Language

1. Use of different objects (washcloth, spoon to mouth, Kleenex) to represent function.

2. Play with objects demonstrating different relations (dumping, putting in, taking out).

3. Continued movement of actions leading to imitation.

4. Partial participation to wipe mouth, throw away, take off.

How will we teach?

1. Follow child’s lead

2. Be responsive to vocalizations & movements

3. The A-B-C’s of teaching…know exactly the behavior being targeted (B) and how much help the child needs under what conditions (A); and provide timely consequences (C) that include the name of the object, activity or person…always lead with the auditory and support with an touch, object, tactile gesture cues, say the name again.

4. Use social interactions that include (a) turn-taking (b) joint activities, and (c) joint attention

5. Use shaping and fading so that you shape a child’s behavior (use a reach for toy to an “extend hand” response and gradually “fade” your support to encourage initiations.

6. Use a “finished box” so Carver will know when activities are finished; let him know that you are removing toys…try to do it within his line of best vision if possible…and gradually fade the sound of the toy so he begins to understand sounds at a distance.