Tuesday, August 31, 2010
Kinnick is legally Blind due to ROP (Retinopathy of Prematurity). She has no Iris, no lens and her retinas are mostly detached with fluid under the retinas. We were told by more then one doctor that Kinnick would not/could not see in Color. Well guess what???? They were wrong.
Listen to my little blind girl tell us the Color of all of her light box bowls.....
She got every Color right! I'm so proud of her. I'm about to split at the seams!
Sunday, August 29, 2010
After all of the fun at Jolly Orchard, we headed to Candlewood Suites in Springfield, IL. This was about 4 1/2 hours from Jolly Orchard in Watervliet, MI. We arrived in Springfield, IL around 3:30 pm. We had a little time to kill, so we headed to the Henson Robinson Zoo. The Zoo honored our Sedgwick County Zoo pass, so it was free. Can't pass that deal up.
The Zoo was really small. Not many animals - mostly birds. They did have some spider monkeys, penguins, a snake, some goats, a couple bobcats, tortoises, and a wolverine.
Carver was a good sport. Kinnick wanted nothing to do with the rubber animals and masks.
We got up early Friday morning because we wanted to go to a nearby Orchard before hitting the road. Jolly Orchard was about 2 miles from our hotel. You could pick your own fruit. They were currently allowing you to pick red raspberries and apples. There was a play area at the orchards that would be nice for most kiddos. We didn't go into the play area. I think there was a slight charge and we really didn't see much for Kinnick and Carver.
We stopped to take pictures of our little "vegetables"....
Kinnick the watermelon head.
Carver in the corn.
Then it was off to pick apples and berries...
We ended up with so much fruit, we weren't sure what we were going to do with all of it. We bought plums, apples, pears, nectarines, red raspberries, and tomatoes.
That evening, we found something to do with the red raspberries.....
We hit the road early Thursday morning. We had decided to try out an indoor water park at a hotel off the highway on our way home. The hotel was about 3 1/2 hours from Troy, MI in a town called Watervliet, MI. The indoor water park was called Surfari Joes. On the way to the hotel, we stopped at some chocolate shops to get truffles, fudge, and toffee. Our eyes were bigger then our stomachs. We ate so much chocolate that we about made ourselves sick (me and Nurse Marci).
I was really excited about the water park. They had a small shallow play area and a lazy river. I thought this would be perfect for Kinnick and Carver. We put our swimsuits on right away and headed down to the water park. I ended up being really disappointed. The shallow play area was really close to the jungle gym play area for small children. There was a huge bucket of water at the top of the jungle gym that would dump whenever it filled up. When it dumped, it splashed (poured) all over the play area. You were lucky if you didn't get flooded. The water was cold and Kinnick and Carver were turning purple. So, we decided to float down the lazy river. We got our tubes and climbed into the lazy river. Well, it wasn't a very "lazy" river. The river went very fast. This wasn't really a problem. The problem was that big kids and ADULTS were swimming in the lazy river - basically letting the river push them along. They would run into our tubes, pushing us into the walls (the river was barely wider then our tubes). The people were rude and acted like we were in the way on the tubes. I was afraid that some of the smaller children were going to get lodged between a tube and the side walls and drown. The staff didn't seem to care that this was going on, so we just bailed on the water park.
We went back to the room, cleaned up and headed to Silver Beach. The beach was great. There was a nice play area and tons of sidewalk to walk around the area. We had a great time, and it was minutes from our hotel (15 min).
Kinnick walking in the sand.
Carver sinking his toes in the sand.
The play area on the beach.
Kinnick and Carver on the Pier.
The drive to Royal Oak, MI is always long. We headed out on Monday, August 23rd. We drove to Springfield, IL and stayed at our favorite Candlewood Suites hotel. They have everything we need for an overnight stay - Fridge, microwave, plenty of table/chair space, and washer/dryers.
We got to try out Carver's new Special Tomatoe seat - attached to a regular chair. It worked out great.
We got up early Tuesday morning and finished our drive to Troy, MI. We stayed at our usual Candlewood Suites. The EUA's were scheduled for 6:30 am (5:30 am CST) on Wednesday, August 25th. We were tired after 2 days of driving, but managed to get up on time. Kinnick's eyes didn't show any change. Carver's eyes didn't show any change except the sponge that was previously placed behind his left eye had come loose. Dr. Drenser removed the sponge. This just required a small incision in the eye. The Dr. gave us some ointment to put in the eye to help any discomfort. Carver handled the surgery with no problems, and has recovered just fine. He was happy the entire trip. Dr. Drenser talked to us about some things that are in the works and waiting for approval. One is a retinal chip that could be placed in the eye and would work similar to Carver's Cochlear Implant, but would be for vision. The other was a laser surgery - similar to the old PRK (prior to LASIK). This would alter the cornea so that contact lenses wouldn't be necessary for a child that has had their lens removed. This would take the place of contact lenses and would offer constant "best possible" vision at all times. No more losing contacts and torturing your child putting contact lenses in their eyes. There is still a lot of controversy over this method - similar to making kids wait until age 18 to get LASIK. Hopefully we'll hear more about this at our next visit. I asked the Dr, "What can Kinnick and Carver see with the condition of their eyes". Her answer was, "We just don't know". If an adult had a retinal detachment, he/she would lose complete vision very quickly - including any light perception. However, when small children have retinal detachment, they could have light perception for decades. Therefore, there is something very different about the timing of the retinal detachment and eye/brain development. So, until Kinnick or Carver can tell us exactly what they see, we just won't know.
After surgery on Wednesday, we went back to our room and cleaned up. Then, we met the Larson's (Conner's family) for lunch at their house - about 20 min from the hotel. It was a really nice visit. Kinnick loved having another "little people" to play with. She kept wanting to hug Conner and tell us where his ears are eyes were located. It was really cute. We hated to leave, but the Larson's had a back-to-school event to attend that evening.
Sunday, August 22, 2010
We leave for Michigan first thing tomorrow morning. Kinnick and Carver have another EUA to check the status of their eyes. As always, we're hopeful that surgery will not be necessary, but we never know until the doctor is able to get a good look at their eyes.
I'm excited to see some of our micro preemie friends and family. I think that's the best part of going back to Michigan.
On the way home, we're planning a stop at Surfari Joe's Indoor Water park in Watervliet, MI. This is a hotel with an indoor water park - similar to the Great Wolf Lodge. You get a room for the night, with 2 queen sized beds, 4 passes to their indoor water park, and breakfast for $99. We'll be staying the night of the 26th. If anyone is nearby or wants to make the trip, we would love to see you there! I won't have my computer, but I'll have my iphone, so just send me an email. My email address is at the left hand side of my blog.
Friday, August 20, 2010
I recently registered Kinnick and Carver for the Seedlings Braille Book Angel Program (see link in the "Resources" section of my blog). Today, we received (4) new Braille books. The program gives (2) free Braille books/per year to blind or visually impaired children.
Kinnick and Carver love their new books. Thank you Seedlings.org for your generous donation.
Thursday, August 19, 2010
We're trying to get Carver ready for booth testing. Right now, his CI's are programed based on NRI's (Neural Response Images). A computer is hooked up to Carver's CI and sends electronic signals that report back the neural responses. Then, his CI is programmed based on those responses. While this gets Carver's CI's (hearing) mapped within reasonable limits, it's not necessarily the best map for him. Most kids are able to tell you what they can/can't hear. If they can't tell you verbally, they can push a button or device to indicate they heard something. Carver's disabilities make this difficult. He can't see and his CP makes good hand/arm movements difficult. We've been working hard to teach him to hit a button when he hears something. However, we can't find a button that works. He loves to hear what the button sounds like, so he just grabs the button and keeps pushing it. Kat (with the deaf/blind with CI's project/grant) has been trying to find an interrupter switch that will prevent the button from working unless a sound has been presented first. This week, she met with the KU (University of Kansas) behavioral research scientists, and they think that a program can be generated on a computer to accomplish this. The computer/program would control the switch, eliminate human non-errors, and record all of the test results. Kat also met with the programmers, showed them a video of Carver and his difficulties in order to help them understand our challenge. The programmers were so excited, that they are thinking about writing a grant as this has to be a problem/challenge for many kids who can't respond easily to auditory training. Therefore, if they are able to write a program that works for Carver, it may also work for other children just like Carver - placing them one step closer to better hearing. What a deal! This group truly wants to help these kids and wants to see them succeed. We are so thankful to have been hooked up with this project. Thank you, Kat! We really appreciate all of your efforts and the efforts of the entire project/grant team.
Saturday, August 14, 2010
A few weeks ago, we searched the web and magazines looking for something that would help hold the toys on Carver's tray. We came across a neat bumper guard that strapped around the tray. Well, they wanted almost $200 for it. So, we came up with our own bumper guard - one nicely cut "Pool Noodle" - just $4.04 at your local Target! It works great! We just slit the tube down one side and slid it on each side of the tray.
Check it out....
Thursday, August 12, 2010
Finding good seating for someone that needs lots of support is difficult. Carver received $250 from the Deaf/Blind with Cochlear Implants project last week. This is the fabulous project/grant that Carver is hooked up with. We used the money to buy a new Special Tomatoe Floor Sitter, and we LOVE it. It really fits him nicely and holds him in place. The total cost was only $291. We bought it from adaptivemall.com. Right now they have a 5% discount going on the Special Tomatoe products (Coupon Code 5PERCST).
Monday, August 9, 2010
Carver has a sleep study again tonight. It seems really odd being home without him. Bob agreed to stay overnight at the sleep center with him. Now, I'm sitting here kicking myself because I can't stand not knowing what is going on. Hopefully, he will have an awesome night and we can try to take him off oxygen at night. Either way, I sure miss my cute little guy.
So, what did we do tonight without the husband and the little man? We watched the bachelor pad. I'm addicted to all of the bachelorette and bachelor shows. I can't to see who wins the $250,000 in the end.
Wednesday, August 4, 2010
Carver was fitted for new DAFO's yesterday. Thank God! I absolutely hate his AFO's. Every since we got his AFO's, they've been a pain. When we got the AFO's, they put an articulator in the heel of them. Well, Carver has so much tone, he just pushes his heel out of place - making the AFO's worthless. Now, his ankles are tight. So, back to plain old DAFO's. We loved our DAFO's. We NEVER had a problem keeping them on correctly. In fact, Carver did so well in his original DAFO's, they wanted to give him the articulators. This is kind of a step up. This is when the Orthapedic doctor moved him to AFO's. Carver's Orthapedic doctor doesn't like DAFO's, so we had to work around her to get them again. We just asked to find our own supplier - instead of using hers. I can't wait to get them. They should arrive in a couple of weeks.
Carver seen his ENT today. So far, so good. The infection seems to be clearing up - if not gone. We see the ENT again in 4-6 wks. Hopefully then, we'll talk about surgery to put the right CI back in.
Other then this, we're preparing for school to start again (home bound), and preparing for our trip back to MI to see the eye specialist.