Sunday, September 25, 2011

September 25th, 2011

Kinnick managed to have her eye surgery despite crappy lungs, an impressive stridor, and low oxygen saturations. I was sure they were going to cancel her surgery on the spot. We had a pre-op appointment the day before and she was doing fabulous. No signs of any lung issues. She was even satting 100%. By the next day she was satting upper 80's and lower 90's, and had a terrible stridor. Her lungs crap out with no advance notice. I think the only thing that saved us was that they expected the worse based on her medical history. I came prepared with the oximeter and plenty of oxygen. I was determined to get the surgery and get home. I didn't meet the doctor until the day of surgery, but immediately loved him. He had read Kinnick's entire file (including all eye surgery post-op reports) and knew what he was up against. He observed Kinnick while visiting with me and noted how often she rubs her eyes. Based on the previous surgeries and how often she rubs her eyes, he opted for the Cyclophotocoagulation laser surgery. This is usually done to treat people with severe glaucoma that cannot be controlled by medicines or other minor surgeries. The eye doctor aims the laser at the white part of the eye (sclera). The laser goes through the sclera to the ciliary body. The ciliary body is the part of the eye that makes the eye fluid. The laser damages parts of the ciliary body so that it will make less eye fluid. This is much less invasive than the valve that he was going to place in her eye to drain the excess fluid. The surgery took over an hour, but when he came out to talk to us, he said that he felt like it was the right decision and he was very happy with the surgery. Now we wait to see if it made a difference. We'll know more in a month when we have her eye pressure checked again.

This was our first visit to Children's Mercy Hospital in KC, MO. I was very impressed with the staff and their level of care. This was the first recovery that we've been to where Kinnick wasn't screaming when we got to the room. She was sitting quietly on a nurse's lap. I could hardly believe she was my child. She's usually really mad at me for letting them take her, and the drugs make her crazy. Normally, she's pulling her IV out and kicking. She didn't even touch the IV or the eye patch. In fact, she didn't touch the eye patch at all. We took it off at the doctor's office the next morning. The doctor dismissed Kinnick in our care shortly after surgery. This made me extremely happy. I was told that she would likely have to spend the night.

We're home and everyone is doing fine. Thanks for all of your prayers!

Sunday, September 18, 2011

Toy Gym made out of PVC Pipe - Very Cool

I belong to a micro-preemie group on yahoo.groups. A lady in the group posted a cool Toy Gym made out of PVC Pipe. It was such a cool idea, I ran out today and purchased all of the pieces and made one for Carver - Iowa Hawkeye style...

You can check this out on her blog at She has a lot of really cool ideas on her blog.

Wednesday, September 14, 2011

Overdue update...


Sonova Announces immediate market re-entry - FDA Approval for Advanced Bionics!

Here's the link....

This means that Carver can finally get his right ear implanted again!!! We will likely have this done next month. We need to get through Kinnick's eye surgery first.

Kinnick is scheduled for Glaucoma surgery 9/22/2011. The pressure in her right eye continues to be high - in the lower 30's. They will be putting a valve in the eye to drain the excess fluid. Our doctor in Michigan only works on retina related issues. This is another specialty - yippie, we needed another one, right? Luckily, we found a very qualified Glaucoma doctor about 3 1/2 hours from our home. So, we won't have to take the long 16 hour trip for this surgery. This doctor is located in Kansas City. My best friend lives in Kansas City, so I'll get to see her while I'm there, too.

Carver got another round of Botox on Monday. It doesn't seem to make a huge difference, but every little bit helps. He recently had hip x-rays done and they didn't show any signs of trouble, so we're doing something right.

Carver is now attending pre-school 5 days a week. He seems to really enjoy going and likes all of his teachers. He's in a very small classroom - only 3 kiddos. There are more adults in the room then kids. This is giving him tons of attention.

Kinnick is still homebound. She continues to battle bad lungs. She spends about 50% of her time back on oxygen. It's crazy. Someone with a cold just has to walk by and she needs oxygen. Despite the fact that Kinnick is homebound for school, she is doing great and continues to learn. She's very interested in her A,B,C's and the sounds that each letter makes. She can say her A,B,C's and many of the sounds. She's counting to 10 in English and Spanish (little smarty pants). She's also doing a lot more pretend play. She's learning to walk around outside and listens for environment sounds to help tell her what's going on and where she is at in space.

Saturday, September 10, 2011

Kinnick counting to 10 in Spanish

Kinnick learned to count to 10 in Spanish all by herself! We have several toys that have multiple languages. One afternoon, we asked Kinnick to count to 10. Much to our surprise she counted to 10 in Spanish! We asked her to do it again and here it is....