July 30th, 2009

Look at my kids growing up....

Kinnick loving her baby. She's come a long way from the days that she wouldn't even touch her baby. She would quickly fling it over the side of the chair as soon as it hit her lap. If she found it in her bed, she would quickly throw it out of her bed onto the floor. Now look at her.

Carver loving the new Little Tikes Rocking Puppy. He needs help to enjoy the ride, but you can tell that he loves it. He's resting his head at the moment.

July 29th, 2009

I worry every day about the progress that Kinnick and Carver make. I want them to do everything that a normal healthy toddler is able to do. Some days it feels like we aren't getting anywhere and I have to really step back and think about where we have been and where we are today. Sometimes it's really hard to see the changes because they are so gradual. If we don't keep working on things and pushing Kinnick and Carver, then they may never do things that they would do if we pushed them. They're really doing pretty good for being blind and blind/deaf.

What is Kinnick able to do?

She is pulling to a stand using just about anything.

She is walking around walls, furniture, or anything she can touch.

She is bum scooting all over the place.

She can walk with her gait trainer - by herself.

She can sit in the cozy coupe without falling out and on a tricycle while you push her around.

She can take her puzzles apart by herself.

She can get blocks out of a container.

She can pat-a-cake and do the fishy song.

She has our entire upstairs committed to memory and can go anywhere she wants to go.

She can wave bye-bye.

She has several small words and several first letters of words.

She is eating her baby food and drinking her milk with help.

She is OFF O2 during the day!!

She has not been in the hospital over night since last year.

This is pretty good for a little blind girl with hypotonia. I was told that blind children do not walk independently until they are at least 3 years old. Kinnick shouldn't have any problem meeting that milestone. The words and eating are a little harder for her due to her paralyzed vocal cord. However, with lots of practice, she will get there.

What can Carver do?

He can roll all over the place.

He can sit with help.

He can hold his head up in his rifton chair (it still gets away, but he does a good job of keeping control over it).

He can stand in his stander while playing with toys.

He can pick up toys to play with them.

He enjoys pat-a-cake, this little pig, and itsie bitsie spider.

He can grab at a toy if you ask him to get it.

He can pat a drum if you ask him to pat it.

He can shake a rattle if you ask him to shake it.

He can anticipate a tickle.

He has a few new sounds including uhda da.

He is eating his baby food and drinking his milk with help.

He is OFF O2 during the day!!

While this doesn't seem like much, it is. It's amazing the difference having an ear makes. Suddenly the little vision he has is starting to make more sense to him. He has really started using his vision (and it is very poor). He really didn't pay any attention to his vision before the ear. It's also changed his eating. Before, his eating was mostly us sneaking bites into his mouth, and forget giving him any fluids. Now, he opens his mouth for EVERY bite and drinks a good portion of his fluids nearly every meal. Not too bad for a blind/deaf child who has spastic quad CP. Carver still has lots of work ahead of him, but we're not going to give up. If we don't try, it will never happen. With lots of work, we still feel like he will sit independently and walk with help.

What can we see?

Kinnick and Carver have suffered from severe ROP due to their extreme prematurity since their NICU days. We've been fighting to keep any possible vision that they may have.

Kinnick's vision:

She had a couple of different laser surgeries during her NICU stay in Wichita, KS. The laser surgery wasn't successful in preventing the disease from progressing.

We've made multiple trips to Royal Oak, MI to see Dr. Michael Trese's group. He does some pretty cutting edge stuff to save vision in extreme ROP cases. Kinnick has had several vitrectomies in both eyes. She has had the lens and iris removed from both eyes. The retina's at one time were completely detached. Due to the multiple surgeries, her retinas are attached at the edges for sure and possibly in the center (we see Dr. Trese 8/19/09). One of her retinas has a dry fold that can not be unfolded. This has consumed about 30-40% of the retina. The other eye is missing about 30-40% of the retina just due to all of the surgeries and effort to save the retina. Her eyes are much more stable now. She has contact lenses on both eyes to take the place of the missing lenses. She manages to find her way all over the house and can see lights and shadows. This allows her to see things in front of her and helps her get around. She can grab at a toy if you put it in front of her and can follow a light or lighted object. So, has all of the surgery been worth it? Yes, absolutely. If we would not have done the surgery, she would be in total darkness. So, I feel like this gives her more to work with.

Carver's vision:

He had a couple of different laser surgeries during his NICU stay in Wichita, KS. The laser surgery wasn't successful in preventing the disease from progressing.

We've made multiple trips to Royal Oak, MI to see Dr. Michael Trese's group. He does some pretty cutting edge stuff to save vision in extreme ROP cases. Carver has had several vitrectomies in both eyes. His retina's were never completely detached - but close. During one of the surgeries, his right eye optic nerve was damaged. As a result, no vision is getting to the brain, therefore no vision is being processed from this eye. However, the eye is in excellent shape with a fully attached retina. His left retina tore due to all of the traction from the ROP. The retina was glued back together and a sponge was placed behind the eye. Silicone oil was placed in front of the eye in an effort to "sandwich" the retina flat to allow it to reattach. The oil has now caused a cataract on the left eye. So, he will need to have the lens removed. This isn't a huge deal since a contact lens can take its place. We believe that the retina is now attached. We'll know more when we see Dr. Trese on 8/19/09. If the retina is not attached, conversations will take place on where we go from here. Putting oil back in the eye after the lens is removed will expose the cornea causing damage to the cornea. However, if the retina is attached - then they'll put fluid in the eye and we'll see what happens. He uses the little bit of vision he has in this eye. We're not real sure what all he is seeing, but we know that he is seeing things with this eye. If we hold something in front of him and ask him to get it, he will. I know the vision is limited at this point in time due to the cataract. So, we're anxious to get the lens removed. So, has all of the surgery been worth it? Yes, absolutely. If we would not have done the surgery, he would be in total darkness. So, I feel like this gives him more to work with. In addition, Carver is deaf, so giving him any vision at all is a plus.

My email address is posted on the left side of this screen. If you have any questions or would like to visit about Kinnick and Carver's vision or the Doctors that we see, please feel free to email me. I am unable to respond to Posts. Blogger doesn't capture the Poster's email address.

July 24th, 2009

We had so much fun outside the other day. It's great not having to be attached to an O2 tank during the day.

Kinnick enjoying a ride in the cozy coup. Focus, Focus, Focus. She's so serious.

We can hardly pry her off the tricycle.

PT Pam is helping Carver take a ride on the little car.

Carver gets the biggest kick out of the tricycle bell anytime we ring it.

July 19th, 2009

Kinnick's first UTI.

Friday, my nurse called me at work to report that Kinnick had a strange odor to her urine. The day before, her other nurse said something about how her urine smelled, and that she had a slight temp 99.3. So, I left work early on Friday and took her to the doctor. They cathed her and took a urine sample (not fun). The test results came back negative. They went ahead and sent it to the lab and sure enough, we received a call Saturday morning to tell us that Kinnick had a UTI. So, she's on another antibiotic. The poor kid, seems like she's constantly on antibiotics. Despite the infection, she still seems to be playing and eating well.

Carver is back to eating like he was before his surgery. He seems to really be enjoying his meals. Now if we can just get them to eat some table foods or snacks.

July 18th, 2009

One surgery down and 2 to go. We have scheduled the next surgery for 8/19. This one will be in Royal Oak, MI. K&C will both need to have their eyes looked at again. Carver will most likely have the lens removed from his left eye. This is making me nervous since we now know this is his only eye with vision. The concern that I have about removing the lens is that the retina may not be fully attached, yet. He has a sponge behind the left eye pushing on the back of the eye trying to help the retina to re-attach. He has silicone oil in front of the eye pushing from the front of the eye. Once we remove the lens, there is nothing to protect the cornea. The cornea and oil will not play nicely together which could cause many, many more problems which could result in losing the eye completely. So, we need lots of prayers that the retina has fully attached and we can avoid using oil once the lens is removed. The lens needs to be removed because the cataract is completely covering his lens. The cataract makes vision even worse. If the cataract continues to get worse, it will complicate the removal of the lens which could cause add'l eye issues. So, the lens needs to go. I'm hoping that Kinnick's eyes are stable and that no surgery is necessary.

We're going to drive to MI this time. K&C are off O2 during the day, so we won't need as much oxygen. When we fly (med flight) we can't take the stroller or extra oxygen. If they need to put an air pocket in Carver's eye after removing the lens, we wouldn't be able to fly for 5-7 days. In addition, we would probably be sent to our hotel while we waited for the air pocket to go away. This complicates things -- we would need a car, a stroller, O2, etc. So, Nurse Marci has agreed to take the long drive with me. It's 15+ hours straight drive time. We're going to take 2 days to get there and 2 days to get back. We'll drive 3-4 hrs at a time. We're going to try to make it a little vacation and find fun places to stop on the way there and on the way back - providing K&C are happy after surgery. We're also going to try to meet up with some of our Micro-Preemie mom friends that I've met through my support groups or while in MI.

July 16th, 2009

Guess who's back to his happy little self......

The doctor said he would feel better in 2 weeks, and he was right. Look at this happy little boy. He has the best smile.

July 14th, 2009

Kinnick has learned to smell her feet....

Kinnick singing the fishy song....

Kinnick and Carver - 2 Years Adjusted

It's impossible to get a good picture of them together

July 11th, 2009

Today is Kinnick and Carver's adjusted 2 year old Birthday. They've come so far in a year. I can't even imagine what another year will bring. It seems like the picture below was just taken yesterday, yet it was an entire year ago. What a couple...

Do you have a Buff?

Everyone should have a Buff. Carver is sporting his new Buff. This is another way that we've found to keep Carver's CI in place. It's quick and easy to put on. It's also made with a material that allows good breathing, so he doesn't get real hot. You can put them on different ways for fun - right now we just have it on like a cap, but you can put it on like a pirate cap, too.

July 8th, 2009

Oh where oh where did my little Kinnick go???

Now that Kinnick is mobile, you never know where you're going to find her. Last night, I was rocking Carver and Kinnick disappeared. I found her behind the couch - she had fallen into her toy basket. It didn't seem to bother her. She was just hanging out, kicking her feet.

Kinnick has started taking a lot more steps on her own. She can walk accross a room now, by herself. Of course, someone is right there to catch her if she falls. She's still pretty wobbly.

July 7th, 2009

Day 6 post surgery....

Carver continues to get better. He's still having some rough nights. I think the pressure builds in his head while sleeping. He is eating 1-2 oz of pureed baby food for breakfast, lunch, and dinner. He's not real excited about it - often times he moans through the entire meal, but he is making the effort.

One of Kinnick's contacts came out today. This is the first time one has fallen out since we got the new script. Nurse Marci has mastered putting them in and taking them out alone. I don't know how she does it. I feel bad about restraining her. I'm going to need to take some lessons from her. Kinnick has spent the past couple of days without O2 during the day and continues to do just fine. She's loving it, and so are we! It won't be long before Carver will get to take his off again during the day.

July 5th, 2009

Day 4 Post T&A removal - Carver seems to be doing a little better. He only woke up once last night, and was up for about 20-30 min. Then he woke up crying again around 7:00am. It seems like he wakes up as soon as his drugs wear off. I tried to feed him some carrots again for lunch. He took a couple of bites and then started crying. We'll keep trying at each meal until he is able to eat without any pain. His voice is starting to come back, so some of the swelling has to be going down. I moved his O2 down to 1/4 lt today - daytime only. He seems to be doing ok except when he cries. Whenever he cries, he turns purple and sats in the 70's.

Kinnick is O2 free today - just during the day. So far, so good. We've been checking her sats and they've remained in the upper 90's. Now I need to sew bells to the back of her pants - I can't find her. She's all over the house. She's also decided that she doesn't need a probe on her foot and socks are just not necessary.

A Bill of Rights for Parents of Kids With Special Needs

Written by Ellen S.
Ellen can be found at To The Max.

A Bill of Rights For Parents of Kids With Special Needs

We, the parents, in order to form a more perfect union, establish justice, insure tranquility (and sanity) and promote the general welfare of our families, do ordain and establish this Bill of Rights.

* We have the right to expect our kids to be seen for who they are as individuals, not as labels or diagnoses.

* We have a right to trust our instincts about our kids and realize that experts don't always know best.

* We have a right to ignore the remarks, questions and stares and not give explanations or excuses for why our children are the way they are.

* We have a right to choose alternative therapies for our kids.

* We have a right to roll our eyes straight out of our heads when we encounter certain mothers who brag nonstop that their kids are the smartest students/best athletes ever.

* We have a right to wonder "What if…" every so often.

* We have a right to play aimlessly with our children. Not for therapeutic or educational purposes—just for fun.

* We have a right to blast Bruce Springsteen/ Tom Petty/Any Rocker, down a glass of Pinot Grigio, get a pedicure, go out with the girls or do all of the aforementioned at once if that's what it takes to avoid burnout.

* We have a right to react to people's ignorance in whatever way we feel necessary.

* We have a right to not always have our child be the poster child for his/her disability and some days be just a child.

* We have a right to go through the grieving process and realize we may never quite be "over it."

* We have the right to give our kids chores. Even better if they can learn to make breakfast in bed for us.

* We have a right to stretch the truth when we fail to do the exercises the therapist asked us to do this week because we were too darn tired or overwhelmed.

* We have a right to have yet more Pinot Grigio

* We have a right to fire any doctor or therapist who's negative, unsupportive or who generally says suck-y things.

* We have a right to tell family and friends that everything may not be OK—at least not how they mean it, anyway.

* We have a right to hope for an empty playground so we don't have to look into another child's eyes and answer the question, "What's wrong with him?"

* We have a right to bawl on the way back from the playground, the birthday party, the mall or anyplace where our children's challenges become glaringly obvious in the face of all the other kids doing their typical-development things.

* We have the right to give our children consequences for their behavior. They may be "special" but they can still be a royal pain in the ass.

* We have a right to take a break from Googling therapies, procedures, medicine and treatments for our kids to research upcoming concerts, exotic teas or anything not related to our child's disabilities.

* We have a right to talk about how great our kids are when people don't get it.

* We have the right to not always behave as inspirational icons who never complain or gripe about the sometimes awful realities of raising a child with special needs.

* We have a right to expect quality services for our children not just when they're infants, preschoolers and elementary school age, but when they're in older grades and adults, too.

* We have a right to adequate funding for those services and to not have to kick, scream or endure a wait for them.

* We have a right to get tired of people saying, as they give that sympathy stare, "I don't know how you do it."

* We have a right to wish that sometimes things could be easier.

* We have a right to cheer like crazy anytime our children amaze us—or weep like lunatics.

* We have a right to push, push and push some more to make sure our children are treated fairly by the world.

July 4th, 2009

Not much going on at our house for the 4th of July. Hayden and Harrison went to my sister's house for all of the festivities. Gregory went to his Grandpa's house to help with the train in Abilene, Gage went to Iowa to visit family with his mom, and Kirsten is up at the hospital visiting her boyfriend. Her boyfriend keeps having stomach problems that the hospital can't seem to figure out. That leaves Bob, me, Kinnick, and Carver.

Carver is still pretty miserable. He can hardly make a sound and doesn't want anything put in his mouth. He did try to take a couple of bites of carrots. He loves carrots and really wanted them. He took a couple of bites and decided that was enough. He was having a hard time swallowing. He's been running a slight temperature off and on. We've been giving him tylenol around the clock to help with the pain. He can't have motrin for 2 weeks. This stinks because he has swelling and the motrin would help.

Here are my little firecrackers....

Kinnick is full of attitude. She didn't want to mess with a picture because she was too busy trying to get the swing going and I had to stop it for a picture.

Poor Carver, he was working hard to get to the the vinyl mat. I'm sure it feels nice and cold on his face.

Today was day 3 post surgery. I'm counting the days until Carver is back to himself. They say to give it 7-10 days. We're about 1/2 way there.

July 3rd, 2009

We are home. Carver's surgery lasted about an hour. He slept a lot and whimpered quit a bit throughout the night. You can tell there is quite a bit of swelling in his throat. We're keeping him on 1/2 lt O2 during the day and night. When his throat hurts, his sats drop pretty low (70's) and his heart rate goes up pretty high (190's). He's getting prescription pain medicine and it seems to be helping. He doesn't want to eat or drink. The G-tube is once again coming in pretty handy for the fluids and nutrition. His lungs are a little crackly, but he seems to be holding his sats for the most part. They told me that it could take 7-10 for him to heal enough that he will want to eat/drink. We're putting little bits of water in his mouth as he'll let us - just to keep his throat from drying out. One surgery down - two more to go. How exhausting.

Kinnick has been handling 1/8 lt O2, so we're still hopefull to have her off the O2 within a few days.