School is Cool.

Natalie's back in school! Thursday was her first day back. She did go to summer school, but summer school is much different. The focus during the summer is just to maintain the skills she learned during the school year. Now that she's back in school, she'll be challenged to learn new things.

Getting her hair braided--it's getting sooooo long!

We drove her to school the first day--normally she takes the bus. It was a bright, sunshiny day!

We had Natalie's wheelchair adjusted this summer, and now she fits perfectly in it. It's a really nice set of wheels!

Back in her classroom. Calvin was very interested in what was going on. He loved the classroom.

Natalie was wide-eyed and ready to go. Perry and I agreed that she knew exactly where she was---she was really happy!

Calvin scooted all around the room until Natalie's classmates showed up.

Natalie's chair at the table so she can sit at the same level with all of her classmates.

Nat's in the same classroom as last year with the same teacher, but some other things have changed. There are only four kids in the class this year, so her aide from last year, Tracy, is not needed. There are two other aides in the classroom who were there last year as well, so her new aide is Jeanne. We love Jeanne, too, but we will definitely miss Tracy! She was great with Natalie. If more kids are added to the class, they will try to get Tracy back. Anyway, if you're reading this Tracy, we miss you already!

New Diagnosis

After well over a thousand miles on the road, too many pit stops to count and eight episodes of Mickey Mouse Clubhouse played over and over---we have returned to Minot with a new diagnosis for Natalie's seizures. It was all worth it.

What it comes down to is that Natalie has something called tonic seizures. She DOES NOT have infantile spasm seizures or continuous spikewave of sleep, as previously diagnosed.

Monday was a very long day, as I previously wrote about. It started with a short EEG, and we ended the day with a very long and productive consultation with Dr. Nickels and her resident doctor, Dr. Broomall. We are incredibly happy with Dr. Nickels -- she is fabulous and so friendly.

Natalie and Dr. Nickels, post-EEG.

Becoming an advocate for your child's health is sometimes frustrating; sometimes you explain things that are happening and the doctor acts like it's nothing big, when you know it is. I don't think we know more than any doctor, but we DO know what is happening in Natalie's life better than anyone -- so having a doctor listen to those concerns and understand where we are coming from is refreshing. This is not to say that Dr. El-Zind doesn't listen to us, but I feel like the doctors at Mayo spend more time listening to us. Oh, how important that is!

On Tuesday, we checked Natalie into the hospital affiliated with Mayo Clinic -- St. Marys. Yes, that's St. Marys without an apostrophe. It really bugged me...I don't know why they do it that way. Apparently there's more than one St. Mary. If you know me at all, you know I have issues with improper usage of apostrophes. :)

The view from Natalie's room at St. Marys. It was beautiful!

Anyway, Natalie was first scheduled for an MRI so the doctors could get a complete look at her brain. This was terribly troubling to me because she had to undergo general anesthesia with a breathing tube. I don't know why I was so worried--she was at Mayo Clinic with the best of the best! Regardless, it was terribly frightening for me to watch her go to sleep; it brought back bad memories from the NICU of begging her to stay awake. The MRI took about an hour and we spent the same amount of time with her in recovery.

Soon after, she was hooked up once again for her 24-hour EEG. Four sets of hands worked very quickly and efficiently and got the electrodes, or leads, placed on Natalie's head. I think there are about 35 leads in all. They wrapped her head up to keep them in place---which is something they didn't do at MeritCare, and the nurses spent the whole night fixing the leads. This time, they stayed secure!

All wrapped up!

Daddy spent the night with Natalie in a very uncomfortable bed. (Sorry, Daddy!)

When it was all over with, Dr. Nickels learned all she needed to know about Natalie---at least for now. Natalie has very erratic brain waves all of the time because of the injury to her brain. That was not surprising to Dr. Nickels at all. Viewing the MRI is quite difficult. You realize that she has very little of her brain left, as the pseudomonas and sepsis made her so sick, she got very little oxygen to her brain at a critical time in her development. I know that's hard to hear---it is for me at least. The fact is, though, that Natalie is a bright, happy girl despite the fact that she has so very little brain. She shows us she is happy, sad, excited, etc. She has a big personality for a little girl.

The tonic seizures are just part of her development. We can treat the seizures---and we will continue to do so. We know when she is having tonic seizures because she throws her arms up in the air and her eyes flutter. These don't last for long, so that's a very good sign.

So, once again we are changing her medication regimen. Instead of giving her medicine two times a day, she will get her seizure medication three times a day. A plan has been laid out for changing that regimen if it doesn't work. In fact, we have a plan A, B and C. Natalie will continue to see Dr. El-Zind in Fargo as we work through these plans to find the right one. If none of the plans work, we will go back to Mayo Clinic to reevalute things.

In the meantime, Natalie is getting ready for another year of school! This Thursday will be her first REAL first day of school. Last year, she joined her classmates after she turned three. We're so excited--and we'll share pictures of that day with you later.

Wow---What a Week!

I can't believe it's already been a week since we left for Rochester. So much has happened since my last post on Monday. I have to collect all of my thoughts and start typing...but now is not the time to do that. I hope to sit down and get it done by tonight (fingers crossed). So, check back later!

Natalie Meets Dr. Nickels

Is today over with yet? It seems like it's lasted FOREVER! Don't get me wrong...it was a productive day...just very LONG.

It started out for Natalie and Perry at 5:00 a.m. We had to wake Natalie up a couple of hours earlier than normal so she would be sleepy for her first EEG. Thank goodness the clinic had an EEG hat to fit Natalie's little head. She's had three EEGs now where the techs have had to individually place each electrode to her head. By the end of this, she is usually screaming and crying. Her little pink hat fit perfectly today, and an hour later, we were out of the clinic. Unfortunately, Natalie didn't exhibit any of the seizure-type activity that we're used to seeing, but isn't that the way it always goes? :) It DID show something the neurologist was looking for---and I'll get to that in a bit.

Next up (about five hours later) was the consultation with Natalie's new neurologist, Dr. Kate Nickels. Once again, we told Natalie's story and explained our concerns about Natalie's seizure activity of late. We went over EVERYTHING! Dr. Nickels was amazing---and really did a good job of encouraging us about Natalie's progress thus far, as well as the outlook for her. She told us that Natalie's early morning EEG showed exactly what she expected to see of a child who has had large brain events. The good news is that there are many options out there for Natalie...and that we've just hit the tip of the iceberg when it comes to treating her seizures.

Tomorrow, Natalie has an MRI and another EEG. This time, the EEG will be more in depth as it will be a 24-hour video EEG. Natalie has had two of these before and they've been extremely beneficial. I'm hoping they'll just use a little electrode hat on her, but I'm guessing they will probably glue each electrode individually to her head. Yuck! I hope Natalie handles this better than she has in the past. Perry will stay with her at the hospital since Calvin still just can't make it through the night without me. He did a great job with Grandma Cheryl today, though, and allowed me to be away for both of Natalie's appointments.

After the MRI and EEG, we will have another consultation with Dr. Nickels (on Wednesday). When that is done, we'll be able to come home! I already feel like we've been gone forever.

Everyone was right--Mayo Clinic is an amazing place. We're lucky to have it so close by. Thank you for all of your prayers---keep 'em coming!

Are We There Yet?

Day three of our vacation/medical trip is over---and we haven't even been to Mayo Clinic yet! It was a long drive for the five of us, and I'm very happy we planned an overnight stay in Fargo (with my brother Greg and his wife Tahnee) on the way here. The kids were ready to be done on Friday night.

Last night, we spent the night in downtown Minneapolis. Calvin, Perry and I went to a Twins game, while Natalie stayed behind with Grandma Cheryl at the hotel. We learned that they have great handicapped seating areas, so I think next time, we'll bring her along. The game was great...Perry finally got to see his very first outdoor Major League Baseball game. It was very exciting and lived up to the hype! We were lucky that it didn't rain during the game; however, after the game, a big storm passed through downtown and we were stuck in the middle of it! We had to wait it out in the Target Center entryway. Yikes!

This morning, we packed up and headed off to the Minnesota Zoo. We're so used to Roosevelt Park Zoo, that this one seemed GIGANTIC! It was very nice, but the best part was that we got to meet up with some old friends...Natalie's nurse, Kate, and her NICU buddy, Carter and his family. We had a great time catching up with our friends, then we headed south to Rochester. We are VERY fortunate to be staying at a friend's (beautiful) house during the stay. Calvin is crawling all over the place these days, so the idea of him crawling around on a hotel floor isn't too appealing to me. We are about 15 minutes from the clinic and hospital, so Grandma Cheryl can stay back with Calvin and I can be with Natalie until Calvin needs me again.

We are very excited to see the doctors tomorrow and learn as much as we can about Natalie seizures. It's been a constant worry in our lives, so the more we understand about them and learn to control them, the better off we will ALL be. Natalie deserves only the best! :)

I will update you all again tomorrow as we learn more. For now, I'm one tired mama...and ready for BED!

(I'm sorry I can't include pictures...I don't have a way to get them from my camera to this computer until we get back home. I will add them at that time.)

What's it Like Raising a Special Needs Child?

Many of you have gotten to know Natalie over the years via CaringBridge; others have met Natalie in person and have seen what a beautiful little girl she is. These glimpses of her don't really tell the story of what it's like to raise her day-to-day.

I told Perry last night that I know Natalie has made me a better person, and maybe that's why she is the way she is. She's taught us all so much, and through her eyes I've seen glimpses of Heaven. If her story doesn't make you believe in miracles and the power of God, nothing will.

But the daily struggles can test our patience.

Natalie can't walk, crawl or talk. She can't see and often hangs her head. Going out in public, most people see her and say, "Oh, it looks like somebody fell asleep." No, she's blind, so she closes her eyes. It's a daily reminder of the fact that her sight is so low.

A "normal" three and a half year old would be running around playing or sitting down to watch a Disney movie. Natalie can't do these things, so it's our job to either hold her or keep her occupied at all times. Sometimes she'll sit by herself, but I try to do things with her at all times. This means things often just don't get done around here---and I've come to accept that.

Going out is another struggle, especially with a 9-month-old boy to bring along with us as well. If I'm by myself, I tend to just stay home and have others pick up the groceries or items we need at home.

Sometimes Natalie is happy as can be; other times she is irritable and we don't know what to do for her. We're constantly worried about seizure activity. Two times a day, everyday, we give her three different medications. A simple cold virus that causes sniffles and sneezes for Calvin sends Natalie to the hospital with RSV. A cold can last two to four weeks.

Bath time is growing more and more difficult as she gets older and longer. Feeding is problematic at best. She is slowly learning to take spoon feedings, but she still relies mainly on bottles.

Then there are the doctor trips. While many people use their vacation time to go on family vacations, Perry uses most of his time to go to Fargo or Minneapolis so Natalie can see her neurologist, physiatrist, etc. We've spent so much time in hospital or clinic waiting rooms. We've told Natalie's story so many times and gone through her history with nurses. We've learned how to become advocates for her in the doctor's office and insist upon the best care possible.

But what about the future? It seems we focus on the day-to-day so much that we often forget about what Natalie's life will be like 20 years from now. Who will be there for her when we can't be? How can we make sure she has the best care possible? When she gets too big for me to hold her and bathe her, what will we do?

I prefer to look at things in a different way. Calvin will grow up and one day leave our home; I won't ever have to say goodbye to Natalie. She'll be with me forever. Calvin will soon learn how to talk; Natalie snuggles and smiles and tells us she loves us in different ways. Calvin is learning how to walk and will soon run away from us; Natalie thinks the best place in the world is with her head on Daddy's chest.

With all of the struggles of everyday life with Natalie---I wouldn't give it up for ANTYHING. I'm so lucky to be her mommy. I tell you all of this because I wouldn't have known this without her. She teaches me patience that I never knew I could have. I love her with all of my heart. My cup runneth over. I've cried a river for her, but have learned how to stay strong when things are at their worst. I've prayed to God for everything from saving her life to helping her sleep through the night without seizures. Her life is precious.

I tell you all of this not to complain about how difficult our lives are. Often, I blog about the milestones and big accomplishments in Natalie's life, but that doesn't paint a complete pictures of what our days are like. I don't pity myself one bit---in fact, I only wish others could experience how incredible it is to raise a special needs child.

A voice says, "Cry out!"
I answer, "What shall I cry out?"
"All mankind is grass,
and all their glory like the flower of the field.
The grass withers, the flower wilts,
when the breath of the Lord blows upon it.
Though the grass withers and the flower wilts,
the world of our God stands forever."

Isaiah 40: 6-8