Norah's 9 months old!

Things Norah would like you to know now that she's 9 months old.


I have two teeth, if you look close you can see them. And my shunt is getting less noticable by the day.

I have mastered the pincher grasp this week, allowing me to eat puffs. I love the sweet potato puffs.

I still dislike tummy time dispite Mommy trying to make it fun.

But I do love to eat my toes!

I'm getting closer to sitting everyday, for know I like hanging out on the chair, in my Bumbo, in the high chair, or in my exersaucer.

My mommy made me a new hat!

I have a big brother who is annoying at times, but truely loves me (even when he's squishing me while wearing my jacket).

The Missing Keys Are Found

Three weeks ago I lost my car keys, I admitted to my husband I lost them two weeks ago. I kept replaying the events of the Sunday that I lost them. Of coarse I didn't realize I lost them until Tuesday. When I needed to head to Norah's neurologist appointment Wednesday, I just asked Jason if I could use him. We were in a hurry and that's normal for me to not find my keys hiding in the deep unseen, crumb filled corners of my purse. I kept sneeking the van keys off Jason's key ring until a week went by and I had been searching everyday. All I could remember is that I opened the door to the house and I had better take them out the lock before I forget and Jason sees them there or that Grant takes them. I could not remember what happened after that...oh where, oh where could I have put them???? It must be someplace safe and out of the way so Grant didn't get them, or did he get them and I have to find his safe hiding place? We were coming home from a walk, did I leave them in the stroller? Nope not there. Did Grant hide them in his bedroom? It's now super organized. They have to turn up. I told Jason I had really lost them this time, but I was still sure they would turn up. After three weeks, I FOUND THE KEYS. Where? In the stroller, one of the places I had checked. We went out for a walk yesturday, after a few weeks of cold weather and Grant being under the weather, and there they were. Yeah! I wonder how long before I do that again.....

Sorry Grant for thinking you were to blame for my missing keys. Thank you Jason for being so patient and understanding. I love you.

Sleep....

It's been a long two weeks in this house. After our Easter and spring fun, slowly the runny noses and sneezing began. A few days later, the coughing and waking up every couple hours from the coughing or stuffy nose started. Both Grant and Norah have shared their germ equally with each other, and of coarse us lucky parents. The best moments have been Grant blowing his nose in Norah's hair, and Grant vomiting on daddy, then the next day vomiting on mommy. In effort to encourage as much sleep as possible, I purchased black out curtains for their room yesturday. Despite thinking many times, it's time for separate rooms, I like having them together. So for now I'll keep looking at past pictures of them sound asleep and now that sleep filled nights will someday come again.

It's a Beautiful Day!

Just thought I'd share a few pictures from last week. Grant, Norah and I were able to spend lots of time outside. Norah laid in the grass from the first time and loved it!

Grant finally got to play with his bubble machine he got for his birthday. We had so much fun chasing bubbles!

Charlie was not so found of us invading his territory.

But he liked it more once I pulled out some dog toys. I can't wait for it to be nice enough to plant flowers.

To the Neurologist after all

Life is always unpredictable, I think if it ever became too precitable it would be cause for concern. This morning we all packed into the car to drive to Children's Hospital of Wisconsin for our Neurology appointment. Yup, that's right. Monday the office called to cancel our appointment. Tuesday, while I was at work the called to ask if we still come for our appointment today as the doctor will be able to see patients now. Frustrated!  I didn't know if I wanted to be upset at all the back and forth with the neurology office about this appointment or be happy that we could finally get in. I figure at least Norah's getting in to be seen, that's what is most important.

Jason and I often refer to Norah's neurologist as Dr. Doom-n-Gloom. We first saw her when I was 26 weeks pregnant. Despite Jason and I sharing that ending my pregnancy would never be an option, she talked about termination of my pregnancy and everything our baby would never be. She nicely told us it was her job to make sure we know. Thank you, but God has a plan for our baby girl and we couldn't wait to begin our journey of being Norah's parents.

Norah is in the business of proving that she is all of those things she was supposed to never be. Today I saw Norah's neurologist smile for the first time. Just by the expressions on her face alone you could tell how amazed she was with Norah. She thought Norah would be further behind in her motor skills. She was pleased to see how well Norah interacts with others. Even tough I know Norah is doing great, it was nice to hear her say it.

I'm still upset about the inconsistancy with Norah's appointments and feel like I should be leaving with more information from these appointment. I may need to start researching to find a new doctor, we'll see.

What a Norah day!

First, the biggest news of the day. We have booked our trip to return to Duke for Norah's second stem cell infusion. We'll be heading to Duke in May. We traveled to North Carolina in September for Norah's first infusion, and believe that her first treatment helped her her little brain heal especially after such a rough start. We want the best for our daughter and think this is an answer to our prayers. While the treatment is expensive and not covered by our insurance, the chance it could benefit our daughter is worth it. Duke has been fantastic to work with throughout the process. June has been prompt in returning emails and setting up Norah's infusions. Barbara has worked with us to set up hotels to stay at for reduced cost. The billing department has been great helping reduce the cost of our bills since we are having to pay for it without help from our insurance company and setting up payments. I haven't even memtioned how wonderful Dr. Kutzberg was to meet and all of her staff, and the hospital staff, they were very attentive to our litte Norah. Our overall experience has been great!!

Next part of our Norah day, physical therapy. I can't boost enough about how much PT has helped our little girl. Leslie, Norah's therapist has been so wonderful and helpful. Norah's is now rolling over, pushing up on her little arms, and getting so close to sitting. We have even been able to get Norah to sit unsupported for 15-20 seconds a few times. Keep up the good work baby girl!!

Finally the last part of my Norah day...the frustrating part. The neurology office called to cancel Norah's appointment, again. Norah saw the neurologist in November for the first time after being born in July. See was 3 months adjusted age at that time, the plan was to followup in 3 months, February. An appointment was scheduled the day we left the office in November for the first week of February. I received a phone call with a week of setting up that appointment to reschedule for the end of February, the neurologist would be out of the office. Mid-January came and another phone, the doctor was going to be out of the office that week of February a new appointment has been made for March. While at work in February, my husband gets the third call, the doctor will be out of the office, a new appointment has been made for April. Today, as I worked on setting up someone to watch Grant on Wednesday.  Jason and I wanted to go to this neurologist appointment that we have been anxiously waiting for together withour Grant in tow, and then another call from the office. The neurologist is now on a medical leave. This is some kind of cruel joke, right? I pray that everything for the neurologist is ok, but I'm a concerned parent of my daughter, born with hydrocephalus, and have questions that other doctors and specialists have deferred, telling me to ask the neurologist. This time no appointment could be rescheduled because the person who does the scheduling was out of the office. I do believe we will begin seaching for a new neurologist in the area, hopefully one covered by our insurance. Tomorrow is a new day when will begin to work on that. Goodnight!

Does it really matter when you do it?

Dying eggs is something that should be done before Easter celebrations so you can enjoy their fun colors and hide them for egg hunts. While this year we didn't get around to it before Easter. Norah had her first high temperature, was sick for a few days which led to this Mommy being very worried about her baby girl. Then lots of odd shifts were worked in order for us to go to my parents' house for Easter. When all was said in done, no eggs were dyed. This was the first Easter that Grant could dye eggs, Jason and I couldn't let this pass by. We walked to the clearance aisle and found our egg dying kit and Friday night we made eleven eggs beautiful pastel colors. Yes, eleven eggs, one didn't survive the boiling process. I let Grant help with putting the eggs in the boiling water and he became a little too excited and threw it in. At least he wasn't hurt in the process.

Lessons learned by this mom include:
-make sure you cover your table with plastic or paper, or you table will look like this.

-if we do this before Easter next year, make sure it's a week before Easter Sunday, because it may take that long for the dye be removed from this kids' hands.

Grant couldn't wait to peel the shell off the egg.

Easter Fun

I love Easter, and this year was no exception. I remember last year Easter celebrations being so somber with the unknown of my pregnancy, having just found out our baby was diagnosed with hydrocephalus. A year later, Norah is here and brings our family so much joy.

Our Easter weekend began on Thursday evening when Jason and I piled into the car with the kids to make our 9 hour drive to my parents' house. While driving into the wee hours of the morning isn't our idea of fun we know the kids tolerate the drive much better if they can sleep through it.

We spent the weekend with all my siblings and their families, and 5 dogs. We had time to catch up on the happenings of our lives, cook good food, play kickball and have lots of fun. So much fun that we forgot to dye the Easter eggs, whoops!

Sunday morning we all were up to make it to chuch on time...something our family struggles to do every Sunday, so it was nice to be there with enough time to find a place get settled. After church we spent time trying to organize family pictures at the house, absolute chaos. Kids running around, dogs getting loose, and one Grandpa trying to get the perfect picture of everyone looking at the camera and smiling.

My favorite part of the weekend, the Easter egg hunt that we had on Sunday. Grant is old enough now were he got excited to hunt for eggs and celebrated finding each one. I loved watching him look for eggs, he and his cousin, Ben, helped each other out, they were so cute running around the yard.