Big things happen in no amount of time

Wow, so much has happened the past few weeks I don't even know where to start...

On Feburary 17th My Aunt Norene was killed in a car accident on her way to work. I have been trying to think of the words to explain what this has done, how it's made us feel, but there really aren't any words. Here is one of the many links to the news reports from that day: http://www.kare11.com/news/article/962720/396/Beloved-Isanti-teacher-killed-in-crash

We are continuing to live our lives and smile every day, that is what she would want. I think I will miss her interactions with the kids the most. Hug the ones you love every day.

June has been fighting minor colds and these lovely molars that just don't seem to fully want to cut through. She does love to be a chatter box lately, it's nice to hear that from her. I am getting better about not just holding her all the time, I think she was getting board and annoyed with me for that. More than anything she has been showing more reaction to seeing people that she recognizes! She amazes me every day!

Lili had conferences tonight and did wonderfully. She is really excelling in her reading and vocabulary! She is really going to go far. Her teacher told me how impressed she is towards everyone around her, always nice, befriends everyone, makes me proud to hear that! Lili recently was able to bring June to her class to share not only June but teach her class about epilepsy and Aicardi Syndrome (this was her idea). It was fun to see her tell her class about June, and see how much June enjoyed being there with all the kids! June made a lot of new friends. 

And Joe... He went to his recheck with the general surgeon today and they want him to have a surgical biopsy of the cyst/rib to see what this thing is. He's pretty scared about the whole thing, but I try to remind him not to worry about it until we actually get results. He is officially done with wrestling now (WHOO HOO!) so now we need to find something else less traumatic for him to do! A concussion and a rib fracture is enough for me! He wants to be more involved in band (No contact works for me!). We are still trying to get this biopsy scheduled, but they want it done sooner than later. It will end up being either a in and out thing or an over night depending on the level of his pain.

I am excited to say I will be going to San Diego with my cousin Steph in April, I will how ever miss the yarn store shop hop, but I will just have to shop hop the yarn stores in Cali! I can't wait to have a few days away with her!

Another bit of exciting news, I am doing two types of bumper stickers, one is a fundraiser for Aicardi Syndrome Foundation and one is selling for me (with proceeds going to ASF). 

http://www.facebook.com/pages/Lights-Out-Designs-by-Kati-Rudd/192699954108214

Email me if you would like more info. We are planning on going to the Aicardi Syndrome convention this year in St Louis. The kids are excited, it will be nice to go to one and have a better head on our shoulders about what all of this means. Hopefully I wont be a blubbering mess like the last time! It helps that I have made a ton of wonderful connections to other AS families. 

Well, I think I have all the updates, so much has gone on, hopefully things will quiet down a bit soon!

Thank you all for reading this, sending us messages, supporting June and all of us through these past years. We love you all. I can not express how much your support means to us.

-Kati

Happy Valentines Day

Happy V-day people! Last night was crazy town. I learned the hard way that there is absolutely nothing that will ever stop me from going out to buy meletonin for June if we are out. She was up pretty much all night. I believe she watched Despicable Me "Gru" about 18 times. I think I can repeat it word for word....

Luckily my awesome hubbs let me sleep a bit in the morning. I swear that will NEVER happen again!

As of today, I was able to help out in Lili's classroom for their Luau party, I love seeing the kids and watching Lili interact with people. I did have to play a little hunt and retrieve with some Justin Beiber valentines that one of the girls had taken from another kido. I was sure there was going to be a fight, but I snuck it out of the wrong bag and put it in the right one. You gotta love when a kid has obviously done or taken something when they protect the spot where the said object is located! HA I out smarted a first grader! Somedays, that is about as advanced as I get!

Today is my nephews 10th birthday, I can't believe it, I feel old! I have 6 nephews and 2 nieces and he is one of the ones that really hits me when he gets a year older. The hubs and I were in college and just dating when he was born. Good kid actually got us out of class that night! I think it was an econ class or something of that nature, I wasn't sad to miss it.

Today is also Miss June Bugs 1/2 birthday! She is 2.5! yep! 2.5. I can't believe how big she has gotten, she is really starting to look like a toddler. Sad, but fun to watch her. There is such a difference between Lili at 2.5 and June at 2.5, I know they have WAY different circumstances, but it really is fun to see that sparkle in June's eye when she knows she's trying to get into trouble. I swear if she could walk, I would be in serious trouble. She got into a giggle/ cooing fit tonight that just made me roll with laughter. I love it when she finds her voice and decides she needs to see if the neighbors can hear it too!

I have be busy creating things, I will post pictures as soon as I find my camera, it seems to have legs lately...

Well, I am off to knit before the hubbs comes home. I bought some Papa Murphy's heart shaped pizzas for dinner, Thanks to Di for the coupon!

Loves to all of you! Talk to you soon!

Crazy days leads to no blogging

I fully admit, I am horrible at keeping up with this thing. However, I have been very busy not only with a sick June bug, but with creating some stuff. Last week June's PT brought over a pair of hip helpers for June to try. She has an issue with what I like to call "frog legs", these seem to help, what do you think?

The Red shorts are her hip helpers that I sewed up last night, The pic on the right doesn't do her frog legs justice, since I had just taken off the shorts. 

June has been pretty sick this last week or so, a nasty cold, which in our house means breathing treatments, meds, increased seizures, etc. I can't explain how hard it is to watch her suffer with these colds. Not to mention I am pretty sure the girlie has thrush again, egh....

On to more craftersizing!

I was able to finish my first Rose order, These will be going to the ladies of the Backing the Blue Line - Police Wives Group of the Twin Cities, MN! I am so lucky to know one of these wives personally, I can't tell you how proud I am of not only her, but her husband who is also a great friend of mine. It honors me so to take this little stand behind our local officers. Support the blue people!

I have to appoligize for the short post, but its late and I am very tired. I promise I will attempt to update more! I am hoping to have some things for sale pretty soon, maybe even open an etsy account!

Cheers! - K

"Trick or Treat!"

Tonight was an unusually calm night for us. It happened to be just my kids, my dad, and my self for the actual trick or treating. Grandma came later to help pass out candy! June had a great time! She has a "speech" button that was programed for "trick or treat" and "happy halloween" and was hitting it at appropriate times! She seemed to really enjoy going to the doors.

Kitty June 

The kids

I could tell some people were a little confused by her, her chair isn't quite a wheel chair and she is still in that little enough to not totally place her age stage. At the end people seemed to catch on and go with it!

June playing with pumpkin goo!

We carved our pumpkins last night and June really enjoyed the sensory play time! She loves the smell of pumpkin. I did happen to find about 1000 seeds under her chair cover, maybe she was trying to grow her own.

November 1st marks the start of Epilepsy Awareness Month. When we started this journey I never thought I would gain so many friends and such an amazing support system. This November also marks the two year anniversary of June's Diagnosis of Aicardi Syndrome. I encourage you to visit their site. www.aicardisyndrome.org There is a lot of information about this... syndrome. 

Aicardi Syndrome is a rare non genetic seizure disorder. It is diagnosed because of Absence of the Corpus Collusum, Lucna of the eye, and uncontrolled seizures. There are currently 500-1000 known girls in the world to have this syndrome. It only happens to girls. They are still working on testing to see which chromosome is effected, there is no cure....

Our girls lead a tough life. Not always a very long life, but each and every one changes the world in their own way. I am a better person because of my daughter June.

Wear purple this month, support Epilepsy!

Proud Mama Moment:

Today at school Lili had a Halloween parade. After everyone returned to their classes, I brought June down to Lili's room to get her to go home. Out side the door her friend looked at June and asked Lili if June was sick, "No, my sister has seizures. Her brain isn't the same as ours, but she had a lot of fun today! Say Hi to her!" - I WAS SO PROUD! She stood up and told about her sister with no hesitation and very proudly. Another mom was pretty impressed by Lili too! My girls, they will change the world together!

Real Tears

Today was a crazy day, little sleep, little time, and a possible ear infection. June has been up all night the last couple of night congested and upset. Today once I got home from work, unpacked the groceries and sat down for some cuddle time with my bug she started whinning. Once I called the doctor to find out how long urgent care was open for I had 20 minutes, HA! No way was that going to happen. So tylenol and mama time.

Once the Bugs and I had settled in for our girls night movie, June started crying. Honest to god real tears, pouty lips crying. I know to most people I sound a little sadistic when I say I was tearing up with joy watching her cry. June has moaned and cried for a minute or so maybe a handful of times since the seizures started (October 1st 2009). Tonight, I saw tears....

Never in my dreams did I think I would actually see tears stream down her beautiful cheeks. I was so close to video taping it, but I know that, that face, those tears have imprinted on my heart forever. There is something so amazing to have a girl like June. The two other kids are pretty typical "normal" kids, we went through life same ol' same ol' taking the simple things like tears for granted. June on the other hand. Every breath she takes is a new miracle for me. A smile, a tear, every time she says "ma". All of these things I was told she would never do.

My daughter the rule breaker!

I also have to tell about her sissy, My Lili, a real shining star. Since day one above Mama or Dada, brother or anyone else, Lili has been June's favorite. Lili is the magic one who can stop her from being upset, put her to sleep with a simple touch, and get smiles like no other. The bond they have may not be what we had thought life would be for our two girls, but they carry something that so few people ever get to experience. Their bond is without words, it's pure and deep love.

I am a proud proud mama tonight, every night.

Time Flies

Time flies when you're having fun. I'm turning this to the start of the blog. Yes, it's been up for some time, but time is not something I have had a lot of lately...

This week is Infantile Spasm week, YES I know we're nearing the end of the week, but November is Epilepsy Awareness month. Both of these conditions are near and dear to my family and I, June has both.

I will add as much info on Epilepsy as I can when I come across it. Share with your friends and neighbors. Help turn the world purple in November.

November also marks the time that I actually get started on Christmas presents. Soo much to do and no IDEA on what to start with. My mom, my sister, and I will be doing a craft show the first weekend in Nov., so I am busily getting ready for that. I'll get some pics up once I've got some stuff ready to post.

Well, for now, it's off to crazy town I go. See you all soon....

11.17.10 - the first days

One year, one month, and 17 days ago my youngest daughter had her first seizure. This is her journey...

I would like to think of my self as a pretty average typical midwestern girl. Grew up in a good home, parents are still married, couple of sisters, and a family of my own. The man and I met oh probably close to ten years ago now, while at art college. We got married in 2003, had our second child (the man had the boy before he met me) in 2005, aka the girl, and our littlest bug in 2009. October 1, 2009 was the day that made my life changed forever...

Bug was born a little early, not much, but had to spend 9 days in the NICU at North Memorial. I remember laying on the operating table while they were taking her via c-section (chosen by the way) thinking... She is going to do amazing things... After they took her, they brought her over and all I could see was this tiny little blue hand sticking out of her blankets. "Her hand is so blue" was all I could get out.

We were told that she was having a little trouble breathing and they would bring her to the NICU and it shouldn't be more than a couple of hours and she'd be in my arms.

Things don't always work out the way you think they will... Once in the NICU Bug was put in an O2 hood, then on to a c-pap machine to help her breath. She stayed on that machine for two or three days.  I didn't get to see her face, hold her, or even touch her for those couple of days. People got upset because we wouldn't allow them to go see her, If I wasn't going, no one was. I spent as much time there as I could, asking almost hourly if I could hold her. Her breathing continued to get better, she was a strong little girl.

The moment I picked her up and held her close was the best day of my life. (tying with my first girl that is). I still wish I never had to put her down. She got stronger day by day. Light therapy sessions, feeding from bottles instead of IVs. She was amazing. When it was time for me to be forced out of the hospital, I had to leave my baby at the hospital. I don't know if there was more than a few hours at a time I would go home and not be with her, it was only a couple of days, but luckily there was some amazing nurses in the NICU that without them I would never had left.

The day we left the hospital with bug, she was placed on an apnea monitor for safe keeping and we were told to go home and enjoy. On the way out the door the doc stopped us and mentioned to us to keep an eye on her skull plates, they were over lapping, somewhat normal, but to keep an eye on them with her primary. We went home and we all fell in love all over again...