June 23rd, 2010

Carver was supposed to see his ENT again today for another follow-up on his infection. Instead, the doctor called to change the antibiotic that Carver is taking, and said that we could skip our appointment today. Carver's ENT talked to an infectious disease doctor about the bacteria that is present in Carver's head. The infectious disease doctor felt like the antibiotic was appropriate for the bacteria, but felt like another antibiotic would be slightly better. The antibiotic that he's been on is hard on the bone marrow, keeping the doctor from prescribing a larger (maybe more appropriate) dose. Therefore, he is going to start taking 5ml of Keflex 3 times a day. He'll take this for 20 days. Hopefully, this will be the end of the antibiotics. The funny thing is that Carver's infection appears to be going away. His head feels very firm (no more mush). In addition, the strange eye junk that he has had is suddenly going away. I asked Carver's ENT if the eye junk could be related to the same infection, and he said that it was definitely possible. The eye infection has been a problem since Carver's last eye surgery - which was shortly after the right CI surgery. The doctor said that he wanted to wait 3 months AFTER the 20 day course of antibiotics before doing surgery to re-implant the right CI.

Carver Listening to the bed bugs

I don't normally put Carver to bed with his CI on. However, I always turn on his light-up toy that is attached to the bed. Tonight, I put him to bed for a while with his CI on. I turned the sound to the on position on his light-up toy. I was able to video his response to the bed bug sounds that his light-up toy makes.

Too precious.....

June 19th, 2010

Kinnick still has a LOT of tactile issues. There are very few dolls or stuffed toys that Kinnick will accept. She found Hayden's Woody and Buzz dolls last night. They're pretty old. They were Harrison's when he was little. Immediately, she liked them. I have no idea why, but she does. They are about as close to dolls as we're going to get. Dora is still banned from any bed or chair that Kinnick is in. We've had Dora for a year. Her other prize possession is her Butterfly (fly-fly). She doesn't sleep without fly-fly. Looks like the bed is going to get a little bit more crowded.

We're still working really hard with feeding. We've been trying real Bananas, Peaches (in syrup), and Pears (in syrup). We mash them up good with a fork and try to feed them to Kinnick and Carver. Somehow, Carver manages to get the entire bite to the tip of his tongue and then out of his mouth. Kinnick just gags until she throws up. With work, we can typically get most of the serving into Carver. Today, I mixed his mashed bananas in his pureed mangos. He didn't know what to think about it, but ate them up! They just need to get used to the new tastes and textures. Bananas are quite slimy when you mash them up.

June 18th, 2010

Carver seen his ENT on Wednesday. Some of the preliminary cultures have grown out as a staph infection. The cultures are growing slowly and will continue to be monitored over the next 5 weeks or more. I'm not sure what all of this means, yet. According to Carver's doctor, the antibiotic that Carver is on should resolve this type of staph infection. The site looks really good, so hopefully things are clearing up. The doctor was nice enough to let us soak the tape off the stitches at home. Last time, the doctor tore the tape off in the office and we had tears everywhere. Nurse Marci gently took the tape off at home with no tears.

Carver has been responding to all of the "LING" sounds. He smiles with each new "LING" sound (AH, OOO, SSSSS, SHHH, MMM, EEE). I got a new IPHONE for my birthday. I was able to download a neat "LING" sounds program for my phone. So, we've been having fun with it. Kinnick has even learned to say all of the "LINGS". She said all of them right the first time. Crazy - I can't get her to say new words, but she said all of these with no problem. She still has a pretty limited vocabulary. Her vocabulary doesn't seem to be progressing like we had hoped. So, we have started some sign launguage. She seems to do pretty good with her signs. I just have to keep my eyes open at all times or I miss her requests.

We have a huge list of things to work on this summer.

Kinnick's List:

VI Therapy

Pre-Braille skills:

Top/Bottom/Left and Right side of page/Turn pages

Typing on Brailler and feeling letters

Light Box Activities:

Activities in book

Shape sorting on light box

Playing with controlled levels of light on light box

O&M Therapy

Directionality:

Find things using right, left, under, on, etc. commands

Example: Hide-n-seek with objects

PT Therapy

Strength Training:

Push/Pull

Carry around groceries

Climbing slide stairs

Animal walk – walk like a crab, frog, bunny, etc.

Walking up/down stairs first with rail then without

Balance:

Sit on Therapy Ball – Shift weight side/side front/back

Walking on uneven surfaces with object in hand

Stand using one leg/foot

Jumping – first with 2 hands, then 1 hand, then no help

Hand-eye coordination:

Rolling ball with 2 hands

Kick a ball

Jump off stair with assistance first

OT Therapy

Deep pressure input to hands/arms

Pull-apart toys like pop beads or Velcro fruit

Sidewalk Chalk

Release items into bucket with sound component

Work with stabilization of a toy with 1 hand while using

the other hand to play with it

Dressing/Undressing

Explore textures like beans (see list)

Fill latex glove with water and play with it

Hide things in paper towel holder and let her find them

Use empty tissue boxes as moon shoes

Collect rocks

Dig in dirt

Play in puddles

Squeeze bubble wrap

Motor Activities (see list)

SLP Therapy

Explore tastes/textures:

Smashed Bananas, peaches, pears

Tongue lateralization:

Put food in both right/left cheek when feeding

Self Feeding:

Help load spoon and bring to mouth

Hold and drink from tippy cup

Carver's List:

VI Therapy

Braille exposure:

Feeling Braille books as you read

Light Box Activities:

Activities in book (Pg 52 activities)

Rolling toward light (likes yellow and red)

Playing with controlled levels of light on light box

HI Therapy

Find sounds (above, beside, in front, behind)

Press switch when a sound is heard

Find sounds on resonance board

Listen to nature sounds (machine)

Listen for environment sounds (door bell, microwave, etc)

Introduce sounds like washer/dryer, hair dryer, dishwasher

Shake keys when going bye-bye

Have people greet Carver with hand-shake and “Hi”

Have people say by with a bye-bye shake when they leave

Request Carver’s hands when playing hand games

Play row-row-row-your-boat (let K&C do it together)

Offer choices for play

Try to encourage Carver to push an item away or say, no.

Do this by giving an object he wouldn’t want

Turn taking

Ling Sounds

Reinforce gestures and sounds

Verbally describe things that are happening

Have Carver touch you for “more”

PT Therapy

Quadruped:

In Creepster – bearing weight on hands/knees

Weight bearing on hands/knees over bolster

Standing:

In stander angled so he has to work on head control

Have stand from your lap – sit/stand/sit/stand

Sitting:

Supported to work on head control (rifton, childrite)

Less supported (on your knee or floor) – provide support

closer and closer to waist

Stretching:

See handout provided

OT Therapy

Bang two objects together

Peek-a-boo with heavy fabric

Pushing a ball (work towards two-handed push)

Release items into bucket with sound component

Explore textures like beans (see list)

Encourage reaching for objects

Use right hand to bat at hanging things

SLP Therapy

Explore tastes/textures:

Smashed Bananas, peaches, pears

Tongue lateralization:

Put food in both right/left cheek when feeding

Self Feeding:

Help load spoon and bring to mouth

Hold and drink from tippy cup

June 17th, 2010

Sorry, I didn't mean to post such a downer of a post yesterday. I try not to let things get to me. I think that Carver having his implant removed really sunk in yesterday. Then, me and Nurse Marci went to the GNC yesterday and there was a lady there shopping. When we left, we heard a baby crying. When we got to the car, we noticed that the baby was in the truck parked next to us. The windows were down, and there was a baby, in an infant carrier, and a 2 or 3 year old girl. They were in the back seat of the truck alone. Then the lady that was shopping came out and went to the window to calm them down. She was in our way, so we couldn't open the door to put one of the kids in. I think she thought we were waiting to see what she was going to do. So, she took both kids out of the truck and brought them back into the GNC with her. The 2 or 3 year old was capable of walking and the baby was big enough to carry on her hip. Yet, she LEFT them in the truck. It really bothered me. I've never left any of my kids in the vehicle to go into a store. Anyone could have taken one of her children. What if the 2 or 3 year old got out and was hit by a car? It's a lot of work to get 2 handicapped kids out of the car, yet we ALWAYS do it, and this lady couldn't take her kids out of the truck. Crazy!

Thank you for the kind and supportive posts and emails. I know that I'm not alone and there are many children with more disabilities then my children have. Like most mothers, I just want the best for my kids. They don't know they have disabilities and they are very happy. They compensate for all of their differences - it's amazing. I just wish I had a magic wand that gave them everything they could ever dream of.

June 16th, 2010

I have days that I am very sad when I think of all of Kinnick and Carver's delays and disabilities. I'm sad that they can not see the things we see. I'm sad that they have to work so hard to do the smallest things. I'm sad that they have to go through so many painful surgeries. I'm sad that Carver can only hear with his CI's on. I'm sad that Carver can not walk. I'm sad that Carver can't sit by himself. I'm sad that they can't enjoy a bag of M&M's. I'm sad that they still require their G-tubes for a great deal of their nutrition. It just seems so unfair. It's so hard to believe that God has a plan for these beautiful children. It's so hard to understand why they need to struggle like this as part of the plan. I know God doesn't make mistakes, and I try to be strong, but some days are just harder then others. I love my children with all of my heart, but it just breaks to see them struggle some days.

June 13th, 2010

The day started out overcast, but ended up being a pretty nice day. We got to spend quite a bit of time outside. Kinnick loves playing outside. Carver does "ok" if it's not too hot. He's an air-conditioner kind of guy. His cheeks turn red and he drips with sweat when it's too hot.

Carver took his music cube outside with him. He enjoys turning the cube and listening to the different instruments.

Kinnick hogged the tricycle. She always rings the bell when she passes Carver.

Kinnick was even able to have some water fun in the yard with her older brother, Hayden. She's tolerating walking in the grass. This was a big step for Kinnick.

Post-Op

Carver is feeling MUCH better today. He's back to himself. Rolling around and chewing on his chewy. There is a little swelling, but overall the wound doesn't look too bad. The doctor put in a larger ear tube while he was doing the surgery. He felt like the tube he put in a few months ago wasn't going to be sufficient. The new tube is intended to stay in longer. The other tube was only intended to stay in for about 6 months. He has had some bloody drainage from his ear, but nothing that appears to be alarming.

My happy little trooper....

Right Cochlear Implant Removal

Carver had his right Cochlear Implant removed today. What a long day. We had to be there at 8:30am and got home around 5:00pm. The doctor feels like we made the right decision - to remove the implant. When he opened everything up, he could see infection all the way into the mastoid. This was obviously an infection that wasn't going away. He took a number of cultures and is going to try to get us some answers. Some of the cultures can take up to 6 weeks to yield an answer. We won't be able to put the implant back in for at least 3 months. It could likely take longer depending on what it takes to rid of this infection. This has by far been the worst recovery after CI surgery. Carver has been a mess all day. Normally, he's crabby after surgery, but back to himself by the time we get home. Not this time. This time, his throat has been bothering him from the tube they put down his throat to breath for him. His stomach is bothering him from the drugs they gave him. They gave him versed to calm him before surgery. I'm not quite sure why he needed it. He's a pretty happy guy and goes to anyone. Then after surgery, they gave him morphine - "just in case". I wish I was there when they made the decision, because I would have asked to give him something like Tylenol with codeine vs morphine. His bowels are having quite a time waking up and his stomach looks like he is 9 months pregnant. I'm sure his head hurts from all of the tugging to get the implant out and all of the cleaning they did to get rid of the infection. I'm hoping all of the drugs will wear off tonight and that his throat feels better by morning. Poor guy. I hate making him have all of these surgeries. I just want to give him every possible opportunity to hear. Hearing is such a huge benefit when you are blind. I have no way to improve his vision. I can avoid losing any more vision, but I can't get back what he has already lost.

Please pray that the doctors are able to figure out what this infection is and are able to rid of this ugly infection. Please pray for a speedy recovery and a quick return to hearing with his right ear.

Kinnick learns to Sit-n-Spin

Kinnick got a Sit-n-Spin for her birthday in March. Her hypotonia diagnosis doesn't allow her to "build" muscle. So, spinning on a Sit-n-Spin is a lot of work for this little girl.

Look at her go!

June 2nd, 2010

Since my last post, Carver's wound behind his right ear (CI) has broken open AGAIN. The infection from the Cochlear Implant is not going away. Carver is being scheduled to have his right Cochlear Implant removed next week. Bio Film infections are nearly impossible to get rid of without getting rid of the foreign object that the infection has adhered itself to. This completely stinks for a lot of different reasons. One, we've wasted nearly 9 months. Two, this will set us back a minimum of an add'l 3 months before he can be re-implanted. Three, Carver has to go through at least 2 more surgeries. The doctor gave us the option of going back in again and cleaning things up - maybe moving the implant to another location. The risk is that the infection will still be there and he'll end up STILL needing to have the implant removed - meaning a total of at least 3 surgeries. Based on the fact that we already cleaned it out once and the infection is still there, I just prefer to take the implant out. This will give his body a chance to get rid of the infection and we can start with a fresh implant and pocket. However, even with the infection hanging out for the past 9 months, Carver continues to be a happy little boy. He doesn't seem to be bothered too much by it.