March 29th, 2009

Guess who turned 2 today......

It's still impossible to get both of them to look at the camera - at the same time.  Oh, and forget smiling and doing that at the same time.

Kinnick's cake.

Carver's cake.  We had hoped that they would be able to eat their cake this year, but that didn't happen.  Hopefully next year.

Kinnick was mesmerized by the fire.

Carver was tired again this year.  He smacked his cake, so Dad was trying to keep his hands away from the fire long enough to get a picture.    Next year, we'll have to try having the party in the afternoon instead of the evening.

Kinnick enjoyed the bags and paper.

Carver thought tearing the paper was pretty fun.

Kinnick and Carver got a new swing and slide.  The both love the swing, but don't know what to think of the slide.

By the end of the evening K&C were both pooped out!

March 26th, 2009

We had a really good SLP appointment last Thursday.  The SLP waited until the room was really quite, then she rang a bell.  Carver started laughing.  We thought, WOW, did he hear that?  So, we waiting until it was quite again.  She rang the bell again.  Carver laughed AGAIN.  He did this several times.   We feel pretty confident that Carver is hearing with his CI.  I'm going to start conversations to implant his right ear.  Hopefully we can get it done in the next couple of months.  Carver isn't able to localize sound with 1 ear.  Giving him the second hear will help him localize sound.

Tonight, I attended a hearing impaired support group.  The group consists of parents with children with hearing impairment.  The children either wear hearing aides or have cochlear implants.  Tonight a 9 year old boy came to the meeting with him mother.  He's been implanted since he was around 2 years old (If I remember right).  It was amazing to hear him speak and listen.  He sounded so clear and even answered a question asked by a women with a very strong accent.  The children range in age anywhere from several months old to 9 years old.  I have already met several people that will be able to help us in the next steps of our hearing journey.

Just a couple of fun pictures to follow...

Carver loves this dog.  It sings songs and says several things.  He just lays quietly and listens to every word.  When we press the first button, he gets a really big smile on his face.

Kinnick the mobile monster.  She is all over the place now.  She a bum scooter.  She won't crawl, but she'll scoot all over the house on her bum.  She can't see where she's going, so she runs into everything.  In fact, she had her first big fall the other day.  She fell down the stairs.  She wasn't hurt - just scared.  So, that prompted a very quick trip to Babies R Us for a new gait for the stairs.  She just became mobile so quickly.  She's also pulling up on anything that will support her while she stands.  We bought her some really cute new shoes to help with ankle support.  They seem to be helping her a bit with balance, too.

Here's a cute picture of Kinnick playing in a box with her big brother, Hayden.  This is a box from one of K&C's Birthday presents.   We couldn't wait.  The gift is already set up.  However, I think Kinnick showed more interest in the box then the gift.

March 19th, 2009

So many updates.  Where to start?  Let's see...  Carver got his new DAFO's last week.  They definitely keep him from standing on his toes.  They also help him stand better.  No, he's not standing, yet.  However, when we hold him in a standing position, it's much easier, now.  I'm posting a couple of pictures for those of you that don't know what DAFO's look like.

Can you tell that Carver is less then trilled with his new DAFO's?  This was after a couple of days.  He doesn't seem to mind them, now.

They look like boot sandals.  They extend up almost to the knee.  He has to wear long socks that fold over the top.  This helps keep the leg from getting irritated.  We can trim the toe part off if we want, we just haven't done it, yet.  They would probably look a lot better if we trimmed them.

Here's another full picture of his DAFO's.  Can you believe these things cost about $1,000?  Crazy!  They're just plastic and Velcro.   They are custom made, but still...

Carver started a new medication to help with his spasticity.  His legs are still tight and so is his right arm.  We've tried increasing his baclofen dose a couple of times, but it hasn't made a difference.  So, we're now trying neurontin.  He's been on it about a week, and we're already seeing big differences.   I can now 'flop' his legs into an Indian position with ease, and we can easily open his hand and move his arm.  Hopefully this will make a difference in his ability to sit independently and stand.  In the past, he had a really hard time sitting because his legs are so stiff - he wanted to push back to get away from the pain.   This has changed significantly.    His stander still hasn't shown up.  A few of the pieces were delivered to my case manager.  I'm not sure why, it was supposed to be delivered to my home.   So, no stander, yet.

Carver is being scheduled for a VEP (Visual Evoked Potential) test.  This test will be done in the hospital with sedation.  It's much like an ABR for hearing - only this is a vision test.  They will test the brain/eyes response to light.  They look for wave forms.  If the P100 wave form is missing, this would mean that Carver is blind and will not have vision in this eye.  This means that the brain is not receiving any signals from the eye or optic nerve.  If there is a P100 wave form, and it is delayed, then he would just be processing the light slower then normal or delayed.  This will/can improve over time.  This test does not tell us anything about visual acuity, it will just help us understand whether the brain and eye are talking.  We won't be able to test his left eye because it has a cataract and the test would not be accurate.  Right now, I'm more concerned about what the right eye is doing.  This retina is completely attached, but Carver doesn't act like he sees anything with this eye.  So, hopefully the test will shed some light on what's going on here.

Our new eye doctor (Dr. William Park) ordered contacts for Kinnick.  We tried the contacts on Wednesday.  Boy, was that fun!  Not so much.  The second eye took 4 people.  Once they were in her eye, she did just fine.  He verified the prescription +23, I believe.  He is ordering the correct lenses and we should have them in the next week.  He's working on getting the iris put in them.  He has 2 companies that he works with.  We're hoping they'll be able to put the iris on the lens.  Her prescription is so strong and the lens is so thick, that it is possible that they won't be able to add the iris.  We're really praying for the iris.  This iris will help control the light coming into her eyes.  He hasn't been able to complete his visual acuity testing.  We're waiting on some reports from Dr. Trese's group in MI.

Last.. Kinnick and Carver are almost 2!!!  They turn 2 March 29th.  Party plans are in the works.

March 13th, 2009

Kinnick supporting her brother - wearing a bandanna.  Nurse Marci bought Kinnick the cutest pink bandanna.

March 6th, 2009

Today we met Dr. William Park and his team at Envision.   Dr. Park is working with Kinnick and Carver to determine their visual acuity.  Dr. Park and team evaluated Kinnick today.  He believes that Kinnick's glasses are not the correct strength.  Hard to believe that they could be any stronger at +18 and +11.  (He has actually fit a child with +54 lens, so plenty of room for change for Kinnick) He feels like she would benefit from contact lenses instead of glasses.  He wants her vision on target with the correction at all times verses just when she looks through the center of her glasses.  He's ordering several different contact lenses and we're going to see if she'll tolerate wearing contacts.  If she tolerates the contact lenses, he's going to add a pseudo iris to the contact lens.  Currently, Kinnick has little to no iris on her eyes.  This is allowing so much light into her eyes that it is preventing her from seeing much of anything.  If she tolerates the contacts with the pseudo iris, this will control the light coming into her eyes and allow her better vision.  We don't know how much vision, yet.  Based on a visual examination, he felt like the retina in her right eye is fully attached!!! This is great news.  The last time we were in MI, there was still fluid under the retina.  If the retina is fully attached with no fluid under the retina, she may get quite a change with the new contact lenses.  He wasn't able to see much in her left eye, but didn't feel like we had a major pressure problem.  He agreed that the left eye is smaller then the right eye, but wasn't sure, based on his visual exam, what was causing the difference in size.  It is possible that the size difference is related to scar tissue or all of the surgery that she's had on her eyes.  It's also possible that there is some low pressure in the eye.  This is something that will need further evaluation during an EUA the next time we're in MI.  Dr. Park and team are not finished evaluating Kinnick's visual acuity.  He will see her another time in his office to do a sonogram on her eyes.  The sonogram will allow him to see deeper in the eye.  He'll be able to  see the state of the retina and will be able to take measurements of the eye that will allow him to prescribe the best possible lenses.  We're hoping to try the lenses next Tuesday.  I'm not excited about putting the lenses in her eyes.  However, they assure me that after a short period of time, the child will accept the lenses and putting them in will be a non-issue.

Dr. Park and team will see Carver later this month.