Norah Update

Overall, Norah has been well. She brings so much joy to us everyday. Most recently she has become attached to Joey, Jason's doll from when he was a little boy. Joey goes everywhere with Norah.

We started off the new year we lots of appointments. Norah saw her eye doctor. After having surgery back in May to correct her eye from turning out all the time, we now find we have the opposite problem and Norah's eyes are now crossing. Her eyes looked really good until this fall, and we continue to see more and more crossing. The plan for now is just to keep watching and see what happens.

 

Norah had a MRI to check on her shunt and chiari, then we had an appointment with her neurosurgeon afterwards. Well the day of the MRI, they were 2 hours behind schedule, so Norah's MRI was just beginning when her appointment time with the neurosurgeon came. I was an unhappy Mom at this point, because Norah must be sedated for her MRI it meant she had nothing to eat or drink since 7pm the night before when she went to bed, and it was now 1130am the next morning. This left Norah cranky from hunger and dehydration, making starting an IV a little bit more difficult. Norah liked the medications to sedate her, requiring a bit of oxygen and taking her time waking up. At one point the nurse doing her recovery just picked her up hoping that would wake her up, she just kept on snoring away. I told the nurse when Norah's out, she's out. She won't wake up until she's ready. About an hour later she was up and ready to go.

We went right to the neurosurgeon's office, now several hours after our original appointment time. Norah was seen by a PA that works with our neurosurgeon since he was no longer in the office seeing patients. Norah's most difficult problems right now is balance and after being potty trained in August, she has regressed. She is having difficulty recognizing when she has to go to the bathroom. The PA showed me Norah's MRI. Really nothing had changed. Norah still has slit ventricles, leaving just enough room for her shunt catheter. Her chiari remains.

Norah's balance, eye problems, bathroom issues, headaches and being underweight can all be attributed to her chiari.While none of these symptoms are severe by itself, all together they affect Norah's quality of life. The PA said that they don't feel that Norah's symptoms are severe enough to consider decompression surgery at this time. They would prefer to see more regression before considering surgery. While I am not one to jump right on board with major brain surgery, I do think that we should be having a better conversation about when the right time would be. I struggle because I don't want to watch Norah's symptoms become more severe. And if Norah's balance, eyes, bathroom issues, eating, and headaches would be improved by surgery, why aren't we talking about it. Those are some important quality of life issues. For now we find we live day to day, taking a deep breath when days in which Norah's symptoms are exaggerated, praying for patience and that tomorrow will be better.

Norah has continue to make improvements in her gross motor skills, but it has been at a slower pace. Most recently Norah has learned to walk down stairs alternating her feet. Our insurance company feels that Norah is not making enough improvement at this point to continue paying for her therapy. So we have begun the appeals process and pray that they reconsider. Jason and I feel that Norah not receiving therapy is not an option. We have discussed with her therapy center an out of pocket rate for therapy, it leaves us needing to pay $100 a week. I pray the insurance company changes their mind.

Last, we have contacted the school district again. We would like Norah to be reevaluated for an IEP. Norah enjoys going to the preschool we enrolled her in this year but we are being to watch her struggle with some fine motor skills that should be developing at this point. We still often wonder about Norah receptive language. Since Norah has such good expressive language, and is quick to pick up on expected answers, it hard for other to see it unless they are spending more time with her.

Throw in a bad virus at the beginning of February that kept Norah out of school for a week, that rounds out everything Norah since the Christmas.

 

Christmas 2012 Review

Christmas 2012 was filled with.....

Gingerbread Houses....

 

Trimming the tree...

 

 



Christmas Programs...

Fun with Ginger the Elf...

 

Opening gifts...

 

Traveling to see family...

 

 

 



 We hope you had a Merry Christmas and wish you many blessing in 2013!

 



Thankful for "Mums"

Grant and I had a great date night last night hosted by his school. Grant's class began by singing songs for all the moms. Then Grant brought me a mum.

Then we sat down together and painted a tile trivet together, painting his hand like a turkey.

 

 

We finished the night be eating some pumpkin pie and doing the hokey pokey.

What a lovely and perfect evening for me to enjoy my growing young man, who usually prefers to hang with his dad. We truly enjoyed our evening together.

Florida/Caribean Cruise Vacation

Jason's parents are celebrating their 40th Wedding Anniversary this year, and asked our family and Jason's brother, Joel and his family to join them on a Caribbean cruise. So much fun to get to have all your family traveling and exploring together, all of us were very excited.

 

We arrived in Florida a few days before our cruise left to check out Jason's parents new house. They are in the process of relocation from Wisconsin to Florida and wanted to have us see they beautiful new house. It was beautiful. Unfortunately Hurricane Sandy was moving by Florida while we were there so beaches were closed and there was limited time spent outside in the pool because the the dreary rainy and windy weather. We made the best of it and found a great indoor play place to hang out.

After a couple days we were off on our cruise adventure. Grant loved being outside the ship and was truly amazed at how large the ship really is. We spent our first day figuring out the large ship, really a small city on the water, and getting our sea legs. I struggled with motion sickness the first couple days. Norah struggled with her balance, something I didn't think about until we were on the ship. Norah has ataxia and then to put her on a rocking ship, poor girl. She was a trooper, taking everything in stride and working hard to stay on her feet.

Our first stop was Key West. We walked off the ship and walked around the shopping area. We explored what was nearby, found some parrots, and had some ice cream.

The next day we were at sea. We found the small kids pool hidden up high in a corner of the ship and enjoyed it to ourselves most of the afternoon. Grant and Jason went mini golfing, quite the experience while the ship was moving and the winds were blowing.

Arriving in Grand Cayman, the ship had to park on the opposite side of the island because of the recent hurricane so getting off and on the ship to some time and parts of our excursion was cancelled. We still loved seeing all of the island and Jason and I both agree, Grand Cayman is a place we want to return to and explore a bit more.

 

One of stops was at a turtle farm, where we watch the turtles eat, and then held some baby sea turtles. We also got to see baby turtle hatching and climbing out of the sand, amazing.

The next day we arrived at Jamaica. It was a rainy day. Mason woke with a bit of a fever, so Jason and I decided to stay on the ship. We had planned on spending the day at the beach, but we were able to get our money refunded. Norah and I went off to the spa and had a manicure and pedicure. Norah was absolutely spoiled, as the manager of the spa adored her and fed her ice cream as she had her nails done.

I spent some time taking pictures of the Jamaican port in the afternoon before we headed back out to sea.

 

While on the ship we celebrated Halloween. The ship did a great job having activities for the kids, even having trick or treating and a dance. Our family won a prize for best group costumes, we were all pirates and Mason was our pirate parrot.

 

After eating dinner each night we would take in a show on the boat or enjoy the walking on the deck.

 

 

The kids loved going to our room at the end of the day to find their beds turned down waiting for them with chocolates and a towel animal.

 



After disembarking the ship for the final time, we found ourselves with 10 hours to waste in the airport. We are very excited to be on the plane going home at the end of that day.

Happy Anniversary Bill & Trish! Thank you for taking us such a fun family trip.

FALL 2012

Fall has come and is quickly fleeting, we have already saw our first snowflakes this week.

I enjoyed decorating the front door and entry to our new house.

I even was feeling crafty and made the wreaths for the front door. That and I couldn't find a wreath I like for under $60.

 

We spent some time cleaning the neglected garden. We been told by neighbors that the garden hasn't been used in about 4 years, but there are still wonderful herbs, asparagus and blackberries growing in there.

 

 

We pulled out what seemed to be a mile of old rotting soaker hose. I actully couldn't pull out the asparagus, it had taken hold. So that's when we started cutting it up.

 



 

Then there was a day of cleaning up leaves, or maybe lots of playing in the leaves.

Norah hiding in Jason's shirt to warm up.

Hope you are having a fantastic fall as well.

Pop! Pop!

Let see if I can get this blog back on track and update all our family and friends with the happenings in our life.

One day after picking Grant and Norah up from school, we stopped by the grocery store. Grant asked to buy a bag of popcorn for a snack and I said I have a better idea. So we went off to find popcorn kernels. I loved Grant expression as I told him we were going to pop the corn ourselves. He laughed and said that's silly. That's he go to line when we are doing something new and fun.

Once at home everyone was excited to make popcorn so we set to work popping that corn. Everyone gathered around the pot. Grant helped me shake it up a few times. There were gleeful screams of delight from Norah when she heard the corn popping. Mason kept checking in to see what we were up to, but kept playing with ball. Once done everyone gathered around for the unveiling of our popcorn.

The were fascinated at how the kernels changed into popcorn. Grant still says that's silly.

Everyone dug in and enjoyed their popcorn.

 

I'm thinking we should make caramel corn next time.