About Me

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Hi I’m Jen- I'm one lucky lady to be married to the most wonderful man, Jason. I am a mother to three beautiful children, Grant, Norah, who was born with hydrocephalus, and Mason. I love spending my time with my family. I also like to challenge myself with new things. I'm on a constant quest to become more organized, it may never happen but it's a dream. I currently work part-time as a RN in an emergency department. I love this journey of life that I am on with God by my side, knowing that all things are possible when you Believe.

Monday, June 17, 2013

"Weeping Willie"

Taken at the park near our house today as we played & admired the trees.

Grant (and maybe me) loves weeping willow trees. There's just something about them. Grant really discovered them this spring, they were the first trees by us to become green and full of life again. Since then they have been know to us as "weeping willie" trees, as Grant says it.

Saturday, June 15, 2013

Appointment Fun with Norah

This week has been busy, Norah and I are having a competition to see who can have more appointments, it's a tie if it's office time, but Norah wins because her appointments have lead to several phone calls with doctors about those appointments.

Wednesday, Norah had a follow-up with neurosurgery. Back in April, the clinic called to reschedule Norah's appointment and while they were on the phone I took the opportunity to ask some questions I had about Norah. She was beginning to grabbed the back of her neck on and complain of headaches 3 or 4 times a week. There headaches would come in the late afternoon, cause her to stop her activity and within a half hour she would usually be back to playing, and by the next morning no signs of a headache. She had also continued to on the path of not being potty trained anymore. It has been frustrating at times to have been fully potty trained to where we are now. We still have Norah wearing underwear at home, and sometimes for outings, but usually Pull Ups when we are out. We send her to the bathroom every hour or so and keep her using the toilet. We avoid some accidents with our method, but still have accidents if we forgot to send her or sometimes an accident right after using the bathroom, making us wonder if she wasn't emptying her bladder when going to the bathroom. We continued to make sure she wasn't constipated knowing that constipation can lead to incontinence. Over the phone we discussed the need for another MRI, this time of her spine to check for a syrinx, which is a collection of fluid on the spine.

The MRI was completed and the neurosurgery clinic called me back with the results. No syrinx but Norah still had a prominent chiari. We discussed that she decompression surgery for it is where we were headed. By the way the conversation went on the phone, I thought we were going to be discussing decompression surgery in depth at our appointment this week, but it didn't happen that way.

Well, Norah had her appointment, and it was not the big decision making appointment I thought we were there for. I felt like it was a repeat of our phone call and even our last appointment in January. We reviewed all the symptoms Norah headaches have decreased over the last 2-3 weeks. We are seeing them 1-2 times a week. She continues to be slow to gain weight, continues to some gross motor delays and ataxia, she had pneumonia this spring, possibly caused by aspiration. She is having times where her voice is hoarse, continues with a soft snore, and some mild sleep apnea. She is having some problems with her eyes focusing and crossing - all these things can relate to her chiari.

The plan at the end of her appointment was to go to radiology to have a fast MRI done to check her ventricles, shunt and chiari, again. We would follow up with urology to see if Norah has problems with a neurogenic bladder and work on our potty issues, then call neurosurgery to followup again, then schedule a shunt a gram to check the flow of Norah's shunt. The concern being Norah has very small, slit like ventricles, and before they would do a decompression they want to make sure her shunt is working. Then we will have another appointment at that time.

Off to radiology we went, in true Norah fashion she showed off how brave she has become and that being in the hospital is second nature. She went into the MRI machine and laid down to watch a movie with her silly glasses on without a fight. This was a big change because usually walking into the room leads to hyperventilating and major tears from our little girl.

The next morning we went for Mason's 2 year checkup with our pediatrician. Our pediatrician is always so good with checking up on all the kids even if the appointment was made for one kid in particular. He said he had received Norah's fast MRI report from the day before and asked how she was doing and what our plan was. He checked Norah over as well, and thought we had a good plan.

After returning home from our morning appointments, I called to schedule Norah's urology appointment. The scheduler placed me on hold for a minute while she search for an appointment. One of the things I have learned is that when it comes to appointments with specialists there is a lot of waiting, usually at least a month, sometimes up to six months. When she returned to the phone and asked if we could come in the next morning I was shocked. I already had an appointment scheduled for the morning that Norah could tag along with me, and then we could go to her appointment - I'll take it.

So this morning we headed out to our appointments. We met with the urologist, who thought we were doing everything right with keeping Norah using the bathroom every hour. She was concerned that Norah isn't taking in enough fluids throughout the day. This is something that has been a struggle for us. Norah drinks 2 Pediasure bottles a day, but beyond that it takes some encouraging. We watched Norah go to the bathroom there, checked her urine for infection, and did a ultrasound after going to the bathroom. She emptied her bladder which is good news. She did see stool on the ultrasound that made her concerned that even though Norah poops every day that she still is having some constipation problems. She didn't feel that more invasive testing was needed at this time. We will continue with our scheduled bathroom breaks and try to work up to 2 hours between visits, increase fluid intake and work on the constipation issues for the next 6 weeks and follow up.

Once back at home, we spoke with the neurosurgery clinic to review Norah's fast MRI from the day of her appointment and discuss the urology appointment. Norah's ventricles remain very small but stable according to the report. They also noticed some chronic sinus inflammation that they felt we should treat. So they called Norah's pediatrician and have him ordering antibiotics and a steroid to treat for the next month to treat. And we discussed that we would talk again after follow up urology in July. Then conversation ending with talking about decompression again and how it seems to be where we our headed.

So off to pick up antibiotics, steroids, probiotics, flax seed, PlumSmart juice for Norah and some Extra Strength Tylenol for mommy since this week has left me with a migraine. Praying we are headed on the right track with all of this and hoping for making life a little better for our sweet little girl.

Monday, June 3, 2013

Happy 2nd Birthday, Mason!!

Really, could it have been 2 years already since you have joined our family? You have brought us so much joy. You are a lover, at times more stubborn than anyone I have ever met. You are independent, not letting anyone stop you when you are determined. You have taught us about tantrums, something your older brother and sister do little of but you have fully embraced. You keep us on our toes and make our hearts smile.

Happy Birthday, Mason Randall!! We love you.

Monday, May 27, 2013

Last Day of School

Grant and Norah have had a great year at school, I can't believe it is done already. Both Grant and Norah have learned lots and have given many treasures to enjoy.


The evening of the last day of school the kids put on a program that made you smile. The theme was Sunshine and the kids all wore yellow.

Onto Kindergarten for Grant and K4 for Norah!

Sunday, May 12, 2013

Spring Yard Clean Up

It's been a long winter in Wisconsin and the last couple weeks we have tried to take advantage of the warmer (yet, still very cool at times) weather.

First thing to address was the pine trees around the swimming pool. Over grown pine trees around the pool make for a mess, and not too mention a very shady pool area. So started to take down trees in the fall and it was time for the rest to go before open the pool for the summer.

We realized we weren't going to have enough time to clean up each tree and burn as we did it, so I sent Jason off to cut down the rest of the trees and we will keep working on it a little at a time, but at least they won't be shading the pool. Well, with the exception of two, that will eventually come down. They need to fall into the yard and I knew we didn't have time to clean them up and I didn't want to kill they grass in the meantime.

There has been time spent moving things around the yard, and tractor rides in the wagon behind the tractor. The kids all love going for rides.

Next we decide to tackle the garden. When we moved into our house last fall, the old garden was overgrown but had a nice spot in the yard. There were lots of herbs, asparagus and berry bushes left from a once thriving garden. After spending time outside and talking about what to do, we decide it was best to start from scratch.

I went and picked the last of the asparagus, I could believe how quickly it grows and goes to seed. The area was cleaned up, old garden fencing, posts and boards were removed. Then the area was tilled.

New wood for garden boxes had been stained to add color and fun. Grant helped pick out the color, we had fun picking it out.  It was now time to move the wood to the garden and begin constructed the boxes.

Dirt was dropped off by the big dump truck. Grant and Mason couldn't get enough. Norah went off to the other side of the yard crying, she didn't like the big truck and all the noise it made. But once the truck was gone, it was head first into the dirt and Norah was first to be king of the hill, quickly followed by Mason. Grant knew work needed to be done and quickly had his tractor and shovel on hand to move the dirt.

We have been keeping busy with our outdoor projects, which leaves Jason and I planning for more in the future. For now, one thing at a time, we have to finish cleaning up the trees and getting the garden finished and planted.
I now have a new appreciation for how much land 2 acres covers!! 

Thursday, February 21, 2013

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.


Wednesday, February 13, 2013

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!