Hydro Families Meet Up

What do you do when you get a life changing diagnosis for your unborn child? You scour the internet for any information that will help you grasp what the doctors are telling you. Through their grim diagnosis and poor outcomes, you try and find hope. That is where this all began. Finding other families having gone through a smiliar experience shared through their blogs and message boards on the Internet was what helped to give up hope for Norah and her future throughout our pregnancy. They helped to reassure us in our belief that she was a gift from God and her life was worth fighting for. We knew that we could help Norah experience life and love no matter what.

Fast forward to now, years later after reaching out to each other over the Internet, praying for each other in times of need and feeling like you 'know' these families and their story but having never met in person. A place was set for a meet up to take place - Nashville, TN, time to get meet face to face. What a strange feeling it is when you go up to someone to say 'Hi' in real life. We have had the priledge of meeting a few of these families previous only adding to our excitement to meet even more families. I can't tell you how wonderful this experience was for us and the life long friends we have made.

Closing in on Nashville, TN, getting really excited.

Charlie Daniels Park is where our main event occured and where I took the most of my pictures from the weekend. It was a hot, hot day, but waterballoon fights and some small pools helped to keep everyone cool.

 



That was fun, I wish I had more pictures to share from the weekend, even a few of these were borrowed. I find chasing after three little kids sometimes the camera gets left behind. Thank goodness there were so many others there capturing the fun that was had. We all tried to stay at the same hotel so once we left the park, we headed back to the hotel. Swimming, movie watching, talking, eating, we all came together for these activites to continue our get together as much as possible, before our short weekend was up. We have wonderful memories and life long friends after this trip.

Dinosaur World

The Zehrung's were off on a road trip and along the way we stopped at Dinosaur World. It was located in Cave City, KY - half way between Louisville, KY and Nashville, TN. Our original plan was to stop at Mammoth Cave National Park but the more we thought about it, our kids are still to little to be climbing 100 stairs into a cave and Norah is still a little wobbly on her feet. We will have to save that for a future trip for now we stopped at Dinosaur World. We thought Grant would be the one who would enjoy seeing all the dinosaurs but at times I think Norah was more interested than Grant.

The park had a nice paved path through the park. It had some hills, but it provided a great space for Norah to work on balance and walking up and down hills.

 

Eventually Norah succomed to the heat and found a spot next to Mason.

And the on Daddy's shoulders.

Grant was happy to be out of the car, but just wanted to run around and be free. Being told to slow down or smile for a picture were not in his plans.

 

Grant and Norah had the oppertunity to dig for fossils. They loved getting to sift through the sand. The were allowed to pick out three of their treasures to keep.

Then we decide to let our kids get eaten by a dinosaur, they thought it was fun.

Not a bad stop on our roadtrip . . . now off to Nashville!!!

Goodnight, Sweet Dreams???

June 6th Norah had a sleep study...something about that sleep study, not much sleeping occurred.

Norah's neurosurgeon requested that she have a sleep study done several months ago. He wanted to see if she is having a CNS depression that could be a result from her Chiari malformation. At this point we aren't sure Norah needs spinal decompression surgery. She does have problems that most likely are caused by her Chiari, but surgery is a big deal so figuring out when the best time to do it hard. We don't want to get to the point where she is regressing before we do it, but we also don't want to rush into it if the problems are severe. It's a big area of grey. I have learned that with hydrocephalus comes a big grey area. Example: vomiting is a symptom of shunt failure, also a symptom of over drainage, can also come along with seizures, or and the nasty bug you picked up at your play date last week. Hard to know what path to investigate first, and if you wait it out you may find yourself in a life threatening situation.

Well for those of you are curious what they hook you up to so they can monitor you while the sleep study is being perform.

• EEG watching brain activity and watching your sleep cycles.
• Cardiac monitoring watching for funky heart activity
• Leg sensors counting how frequently your legs are moving.
• Temperature sensor
• CO2 monitor
• Pulse oximetry - making sure you are taking in enough oxygen (with all this stuff on your face I'm not sure you can)
• Sensors on your face monitoring muscle movement and eye movement.
• Video monitoring

Norah didn't care for all those wires. The look in her eyes says it all, she didn't take her eyes off the sleep tech that attached it all, she lost Norah's trust.

It took Norah just over a hour to settle down. She woke up three times that first hour, twice because the technician had to come in to adjust the wires to ensure a good reading. The moment in the night where I wasn't sure if this was worth it was around 3am. Norah was awake, crying and asking for Mommy. I answered her and encourage her to go to sleep. She cried. I said everything was alright. She answered "No Mommy, it's not OK." Well that was enough to make me feel awful. Yup this was pretty much an all night torture session. She doesn't understand why this was all happening and why it needed to be done. So I spent the rest of the night in the rocking chair next to her bed and she held my hand tightly. By 4:45am she was awake and not going back to sleep, so the sleep tech started taking off all the wires and we were home by 6am snuggling in with Grant and Jason. They had made a fort in the living room to sleep in for the night.

We were supposed to be called with the results within 7-10 days. So today two full weeks later I called for the results. No one has returned my phone call yet. I guess we'll call again tomorrow.



House Hunters

Well our house sold much faster than we anticipated it would, for which we are most thankful. We quickly found ourselves as home buyers, looking for that perfect spot we could call home. Jason and I headed out in search of our new abode, once with all three kids in tow and on a second search where all the kids we left at home (yeah we learned a valuable lesson find a babysitter for the kids when house shopping). We looked at eight different homes, in eight very different locations. We had found a great house that we could call home, but so did a different couple and they will be the ones calling this wonderful house home.



Back to the drawing board we went. We sat in our family room reviewing all the houses we had seen and some that we hadn't, deciding what to do next. Often referring back to our wish list - we were looking for something newer, more move in ready than our current house was when we bought it. We don't want to be gutting kitchens, moving walls...we want to stick with painting walls and trim, buying furniture to fill spaces and decorating. A dining room is a must have, as well as a yard to enjoy, a work space for Jason, a fireplace would be nice.


It was narrowed down to three...just like our of my favorite shows, House Hunters. I can just imagine the host saying...after losing the house the loved to another offer will  this family pick the dated house with a great back yard with in ground pool and nice neighborhood that could be easily updated, the fantastic updated 3 story house on a large lot way outside of town, just off of a highway, or will it be the plain house found in a nice subdivision that has restrictive rules, it has lots of nice room inside but little space outside.









So which one did we choose . . . . we couldn't decide without one more trip to see each one again. We quickly knew house number two was out of the running. While Jason and I will disagree on certain points, I just got bad vibes from the house. I didn't feel like there was a good space for my family to be together. I saw great spaces, but I also saw a lot of things that did not make sense. I felt like the house would become a money pit. Once Jason found out it did not have cable service it was out for him as well. Jason works a lot from home and hi speed cable internet service is a must have. Then it came down to first house and the last house, really either on would make a great house for our family, but location and school district were a big factors in making our final decisions.



We choose the first house - It is a house that feels like a family live here/it's home when you walk into it. The house has large rooms that seem to flow together. It is far from an open plan but you don't feel closed off from any one space when you are there. The kitchen needs some love. The cabinets are dated, but not awful (especially once the hardware is removed from the center of the cabinet and painted- I have ideas pinned already). Some appliances need to be replaced.  The dream is to renovate the kitchen fully, reworking the layout but that will be a few years away - once some money is saved up for that adventure. The house a four bedrooms but Grant has already proclaimed that he and Mason will always share a room. I love that they want to be together. There is a great office space on the first floor, I sure Jason will enjoy that space versus the basement in our current house that serves as his office. The yard is large, very large like 1.7 acres large. It offers an in ground pool that recently had a new liner place, a large garden and  a big open space for kids to play. It also has lots of trees, like a couple maple trees that are dead and need to be removed and trees that surround the pool completely shading it and making the pool a bit difficult to take care of. It comes with about five of those beautiful lilac trees that make me not want to leave my house in the late spring when they bloom - so I am sorry to say they will most likely all have to go. Oh and did I mention it on a cul-de-sac, and there is a park just down the street. I am quickly falling in love with our new house.

We are oober excited that we have found this house, and now that we have an accepted offer we are ready to say good bye to our home and settle into it. Now we just have to patiently wait for closing day.