Thursday, December 29, 2011
After that I had to get Andi ready for an appointment with a new Dr. Actually it is a chiropractor. There is a lot behind this and after this, that instead of totally throwing this post on a tangent I will just promise to comeback another day and talk about the specifics of all that. On our way to the appointment Andi Jane bursts into tears after I explain to her that us moving to a farm for her birthday probably won't happen. After she wouldn't stop I said Andi, "it's my birthday, can we talk about this later?" Whatever, we get to the appointment, the guy is amazing and worked so well with her. It was a great appointment, I was encouraged, she was excited, yada yada... "ok let's go to school!" "No" "No?" "No I don't want to go to school, my back hurts now" (as my eyes roll) "you are going to school" this was the conversation all the way to school. Cut to me in the parking lot trying to pull a 68lb kid out of the car while she is SCREAMING and fighting me. Yes. This happened. Oh did I mention it was my birthday? We hadn't experienced a fit like that in at least 6 months and she let all those frustrations explode out of her right there in the school parking lot. I slam her door and say fine, you can go to work with me and when we get there your dad will take you to school. You might need to throw in a $ and an # and maybe a $%#$*@$(@*@*$(& as well if you want the exact way the story went, not proud, just honest. It was infuriating. She got me. I am a patient mama. I am one very patient mamajama, but I have a limit and unfortunately when my limit is hit it is not cute. Not at all. So then we drive in silence. I am very certain there was steam escaping my ears. There had to be, I don't know where else it could have escaped from. We get to work and dad takes her to school. Not one peep from her to her dad. She just rode quietly to school, got out and went to school. Curses. Yes, many. Oh did I mention it was my birthday??
From then on I worked. Had lunch with my sister and hubby. (yes my co-workers are my sister, my husband, my cousins husband and a sweet girl that has worked for us for over 10 years, to say were a family business would be correct) but my mood was just even. Not down
but certainly not up. It wasn't my 16th birthday. It wasn't anything special, but typically don't we all just have a certain beam in us on our birthdays? Maybe not everyone, but I do. At least usually. I've been at therapies with Lily, the hospital with Lily, I had OB appointments, I have been sick a time or two all on my birthdays and none of those put me in the mood like having a fight with my daughter. I felt
disrespected, devalued, a person with no sense of authority, embarrassed and sad. I let a 6 year old do that to me. The rest of the evening
was nice, beer and wings with Andrew (yes my choice) but the day just stayed on an even keel for me. It sucked that I was unable to cheer
up. I was unable to change my attitude, but it was what it was. I needed to share that background to go forward.
I'm reading errr rather listening to a book that was read by some friends in a book club that I rarely can ever attend but I like to read what
they are reading, it is called 1000 Gifts. It's not exactly a book I would pick up and read. Well the cover is very pretty, so I may pick it up
but if I read the back I'd probably put it back down. It is a religious book so you faint of heart for Jesus soooo would not like it, and even I
someone who proclaims to the world that Jesus rocks my socks has a hard time listening to something too preachy and I bet myself a
couple years ago would tune out on this one, but you know why? Because of the truths the author speaks of. No one wants to know how
they are doing things wrong, not unless they are willing to make changes of course, so this book has been very challenging for me. I love the
authors writing style, very poetic and I like that she is the one who reads her audiobook. She has a cute Canadian accent that I like to copy
while in the car. But that really wasn't necessary to share. But you should hear me when I am listening to a book read by a British reader.
Oh cheer-io. I so wish I had an accent. Wow. Ok back to my book. She starts by sharing some of her life experiences that were really awful,
she saw a lot of tragedy and darkness but she started looking into what the bible says of giving thanks, eucharisteo, and being thankful and
finding you joy through being thankful and it really changed her life. It was a small project of writing 1000 gifts in her life that just grew and
grew and she now is blessed because she blesses others. Its a beautiful book, I am near the end and my mind has just been so wrapped
around it all and that is why I go back to sharing my birthday. Not to complain, not to be felt sorry for, not for parenting advice for an out of control child, but who I am, where I am and where should I be and who I should be. The book makes lots of mention about people who feel entitled to happiness and do what they can to be happy tend to be pretty miserable people. Also when we have expectations, we are always let down. Like for instance my birthday. Why did I feel that I should have this extra special glow on my birthday? Do I deserve that? No. So why did I expect it? So I share my birthday experience and this book because it is changing my thoughts. She also mentions in this book about how many times she washes dishes (she is a mother of 6!) and expected thankfulness from her family and when she doesn't get it she is upset, disappointed, sad, etc but then she says what if every dish I wash is like washing God's feet? Blessing him. Ok this was a huge point she hit on me because I feel disgruntled every time I do dishes. I hate them so I am annoyed that I am the one who most often is doing them, so when I heard this I thought oh yuck, I can't think like that. I can't feel like I am blessing God, I want thank yous from my family. But then when I dig deeper and really think about this, how do I really want to feel from the inside? Do I want to be "right" on all accounts that it leaves me feeling annoyed, frustrated, grumpy? Or do I want to feel good on the inside and feel joy that only I can decide for myself to feel. And when I think of how I parent when I am full of joy and how I parent when I am grumpy and frustrated those are two different me's. And it doesn't take a rocket scientist to know which one produces better results.
It's not easy being thankful. It's not easy finding the "beautiful ugly" as she calls it. But it is so necessary to do so.
So this 33 year old woman is kind of lucky in a sense that I get a whole new year with my whole new year. A time to look back on what I liked about 32 and 2011 and what I want to change moving forward as a 33 year old in 2012.
I want joy and I feel like I have the tools to find that joy. It will never be with a new house, or a farm (Andi....), or more money or more of anything. It is finding your joy in your house, right now with what you have.
I look forward to a new year with new insight. I pray that I am able to stay on course as this year goes. I am challenging myself to find that beautiful in everything, even the ugly and I challenge everyone else as well. It's not easy, but it's also not easy for everyone around you when you choose to be angry over the expectations you put upon everyone else. So cheers to 2012! I look forward to what I will bring to YOU.
1. Sunshine on my face
2. A city surrounded by mountains
3. Crooked teeth smiles
4. Sparkling blue eyes
5. A boy who is hard to understand
6. A husband willing to swallow his pride and make changes for his family
7. A sparkly blue wheelchair
8. Big round brown eyes
What are some of your 1000 gifts?
Monday, December 26, 2011
So where was I.. Oh yeah Scrooge mode. Not necessarily, I just first hate lying to my kids. Especially with Andi Jane who is well beyond her years. This is the same kid at 3 asked why Santa had the same wrapping paper as us, at 3! So her questions get more elaborate and it's getting hard to keep this whole thing going. She still totally believes. How do I know this? She told Chelsey (Lily's amazingly wonderful caregiver whom is only here during her Christmas break, all our caregivers are wonderful we are very lucky, but it's a special treat to have
Chelsey here for this short period of time) Andi told her that Santa brought her the dollhouse because her parents would have never bought her that. Pretty funny she said that because she watched her dad put it together and we all knew he'd never choose that project on his own.
Anyway, knowing Andi we wont have too long with her still believing, but I am pretty sure she'll help Oli still believe. So who knows how long
we will be figuring out what Alex the elf is doing each night. Although when they do realize it all, they may not think it was that funny that
"Alex" drew mustaches on their faces.
Our Christmas was wonderful. Christmas Eve was simple, we just hung out at home, I baked a lot then we volunteered in our church nursery
and after went to the 5pm service. Lily's class didn't meet so she sat with us. We were pretty close to the front and she was great the whole service, well almost. Andrew sat next to her and held her hand the whole time. That kept her quiet, but then daddy had to go to the restroom,
I was a seat over from her but kept touching her so she knew I was there.... But apparently that wasn't enough for her because in the middle
of service she screamed a scream only Lily knows how to do. So loud she stopped our pastor right in his sermon. He was talking about
writing our own songs in our lives and he recovered by saying just like that and then said that it was ok and smiled. I however sat there with
an extremely red face and couldn't stop laughing. When Andrew came back I told him what happened and for the rest of the service I just
giggled. Apparently in my attempt to quiet the child I put my hand over her mouth and realize that probably looked awful, but I didn't know
what else to do. At the end of the service our pastor made a point to find us and apologize for stumbling after she screamed. I thought that
was very sweet of him, considering we should have been the ones to apologize. He said Lily is welcome in service any day. The service was
standing room only and I'm sure there were well over 500 people in that service so we thought that was very sweet of him to go looking for
us. Everyone loves Lily even when she screams a blood curdling scream in the middle of a Christmas Eve service.
Christmas morning was perfect. Kids loved all their gifts, they were all so excited. Oli got some drums which has been interesting. Gradma
and grandpa N got an electric mototorcycle for him and he's been all over the place in that thing. He's been a crack up. Girls got cute clothes and other fun girl things. Lily mostly cares about pumpkin pie and Aunt Jenn's pineapple cake stuff that goes with ham though.
We went to my sisters this year since my parents have moved up north to Greer. My sister could put any cooking show celebrity to shame. She bakes and cooks amazingly and so it's always nice to be at her house. It was great to see my parents were able to come down for the day and we had a great time. Whenever my family gets together it seems like we end up with a popular quote of the day and yesterday was I was gonna get your gift but the store was closed. That was a true story from my sister to Andrew but then it started coming up whenever we wanted an excuse. Then after my mom gifted out scratcher tickets (they are convience store owners) :) my 14 year old niece sat there while scratching saying "I'm pretty sure this is illegal" which of course ended up being the quote of the day as well. But an awesome thing happened, my brother won $500 on his scratcher! He totally deserved it so it was an awesome thing to watch happen!
After my sisters we went to my aunts and celebrated with my moms brothers and sister, we ate, laughed and played a little LCR and I lost each time. No we really aren't gamblers but it sure sounds like it. Christmas was a great time! We had such an amazing day. I just love being with my hubby and kids on this special day. My extended family makes things even better, but being with my hubby and the 3 very special little people we brought into this world makes me feel really blessed. Also super thrilled with my ninja I got :)
Tuesday, December 20, 2011
And I played Mary in a one woman act on Easter morning (several years ago)talking about seeing her baby boy, first born perfect son, beaten and hung upon a cross. So while I could never say I know how she feels, I can say I have spent some time channelling her trying to imagine her emotions. My favorite time is to imagine Mary though is her with her newborn baby boy. As a mom we all know there are no more precious life moments than your newborn upon your chest. Examining them for the first time after spending 9 months imagining them. And I can only imagine what Mary thought when she kissed her baby boys fingers and toes and realized that this tiny sleeping precious baby is not only her baby, but the son of God who will change our world for eternity.
I love Christmas. I love this week. The one that all the Christmas parties seem to cease and the time left is just us with our families. Baking cookies. Watching Elf, Christmas Story and Christmas Vacation. The time to wrap, construct, smile from within thinking of the smiles we will see on Christmas morning. I cannot wait to hear our little Oliver exclaim is sweet little "wow!" he exclaims whenever surprised with a little something. I can't wait to help Lily pull her goodies of her stocking and watch her get silly after some chocolate. And I can't wait to hear all the theories Andi will have when it comes to how Santa did it this year.
I wish you all a very blessed Christmas spent with your favorite people doing your favorite traditions!
Monday, December 12, 2011
So let's play catch up... we ordered a sleep safe bed for Lily and put our boxing gloves on ready to fight, but they said we'd prefer you go with the easy care bed (which is pretty darn close to the sleep safe) and they'd approve that. What? Insurance improved our request on first attempt? Awesome news. Especially since the other night on prompting from strange lights on the infrared camera in Lily's dark room I found her face down in a pillow having a bad seizure. I immediately rolled her back and she gasped a large breath of air. I don't even want to talk about it. I didn't like that experience, I never want to have it again and I think God might have pulled some strings to get us this far safer bed sooner rather than later.
Lily had Ortho clinic last week checking her scoliosis and the AZ Cardinals were there! It was awesome! We're big Card fans, always have been, always will be! I had all three kids with me due to not being able to get Andi to school and Lily to the appointment on time, so what an awesome surprise. At one moment we had 3 cardinals, 2cheerleaders and the cardinal mascot in our room. Oh and a photographer. It was awesome! They were so sweet to Lily and thought Oliver was the cutest. Andi and Oli couldn't believe the Cardinal kissed my hand and Andi said she was going to tell her dad. On the way home Andi said "Mom the bird expressed his feelings towards you when he kissed your hand" oh she is some kid. Dr was kind as always, seemed a bit jealous of his stature compared to the football players, but got right to business. Scoli still there, and bracing may not be too far in the future. Surgery as well. One thing that caught me off guard was he asked her age twice then asked if I knew what stage she was in her disease, if she's plateaued. I told him we aren't aware of stages in her disorder, she isn't typical rett. I told him she never regressed because she never progressed. She's pretty much always been in a plateau. I was concerned with why he asked and he never followed up on that. My thoughts were he sees her getting older and sees her scoli.. and I don't know. People complain about getting older but they shouldn't. Be thankful for your years you are given. The more the luckier you are. I think when you have kids with severe special needs children the concerns get more as the kids get older. It sucks. That's all I have to say about that.
Thursday the 15th I am taking Lily to keto clinic and we are going to put her on modified atkins in an attempt to help the seizures. I am praying this helps because I know according to Neuro last step will be completing the corpus callosotomy. Her seizures are just so uncontrollable right now, even on 4 meds.
Lily started back up in hippo therapy (horse) but last time we went she had a seizure 5 minutes into it and that was it. We are gonna try again tomorrow. Weather willing. It's raining here. And a lot. So odd. So ridiculous in my opinion. TOM's are not good rain shoes.
Wow. Intended to come on and post about Christmas and my thoughts and yadayada but I guess sometimes when I let my brain take control there is nothing my hands can do but go along with it.
I've been going back and forth about setting my old blog up the one about nothing. There are things I'd like to say on here, but I feel like my feelings on motherhood and especially Lily need to be here, but certain other things that I feel the need to get out shouldn't be done here. I'll let you all know if I do so. That would require more time from me so probably not gonna happen. But maybe.
Do blogs without pretty pictures and crafts even still exist???
Wednesday, November 23, 2011
Last night was a rough night. Lily had a seizure in PT, then fell asleep and slept hard for over an hour. She woke up just to have another seizure. Then she didn't want to eat and didn't go back to sleep very well. So when Andi Jane whom I always let pick a book for me to read from each night before bed asked for some odd reason to read from Lily's baby book, I was like really? "Really Andi this is what you want me to read" and she said "yes I want to learn more about Lily". OK so I read.
I start with the easy stuff, how mom and dad met, how my pregnancy was, then her birth. Then the stupid milestone page that was practically blank. I remember not being able to wait to write the dates of crawling, pulling up, walking, saying mama and dada. But those spots were blank. I trudged on. Reading about her first holiday being Halloween and she was hospitalized at that time. I read her dr. appointments that were supposed to be about well checks and ear infections, yet this was EEG, VEEG, MRI, Pet-Scan, etc. It was awful. Then the last page was where I wrote a letter to my one year old daughter. One who I still thought would still graduate from college and I quickly gave Andi a kiss good night and went into the kitchen and cried into my hands. I sobbed for what I had back then that I don't have anymore and that is hope. I hope this isn't taken wrong, I still have hope that there will be a cure, I still have hope that the future can change. But I am also not still hoping for a life that isn't going to be Lily's life. And it is sad to look back after 8 years of change and see what you thought it would be and it isn't.
And while this is all sad, admittedly sad, it's not hopeless. And I am not thankless for sucky things. Without Lily in our lives who knows where would I be. Who'd I be. What priorities would I set and where would my compassion levels be? I don't think I was ever not a compassionate person, nor an unloving person, or a person with ill set priorities, but I do think I am now a person of more. More love, more understanding, more heart and more passion. So I am thankful for those blank spots on that milestone page. As much as it sucks, I am thankful for them. Because it is those pages that has shaped our lives, our homes, our priorities and it is that precious girl who never has to fill in those blanks that I am most thankful for.
So hug your babies, hug your family. Be thankful for the people God placed in your life, in your family because there may be times you wonder why God set old Aunt Edna in your life and at the seat next to you, but maybe if you listen to what she has to say, even if it is after she tells you she doesn't like you hair style, she may have something powerful to say. Or maybe God just wants you to practice your patience.
Happy Thanksgiving. I know I have tons to be thankful for, I am sure you do to.
Monday, November 21, 2011
I am now a board member for the IFCR (International Foundation for CDKL5 research)!
I'm thrilled to be a part of these special woman doing something to make a change for the future of CDKL5. I won't push things on you in every post. You all know that is not my style. But I did want to let you all know we have a store that is currently selling hand-blown ornaments that are stunning! Each one is etched with either hope, love or cure cdkl5. It is a wonderful way to support our foundation and honestly they are beautiful ornaments!
We also have other fun items that show your support!
Anyway, just check it out :)
Friday, November 18, 2011
After we paid $50 ($50!) for buffet breakfast, by the way, I think if it is really “all you can eat” they should give you a hand stamp so you can come back. Otherwise you just have people like me throwing bagels, bananas and apples in their purses. Which came in handy to the homeless people, although the look on the woman’s face was like yeah I guess I’ll take your banana, I thought it looked tasty.
We go back to our room after 9am and figure Ariel and her boyfriend slept long enough. We woke them up. I wonder if that is the joy Oli and Andi get when they wake us up at 7am on a Saturday morning. Ariel and I head down for breakfast with the girls. (no I didn’t eat twice, just went for the company, but you can keep on judging me if you’d like ;) but what was to be a day with the girls went from breakfast at 9am to all of a sudden it was 7pm. Seriously how does that happen? I mean. We didn’t shop, really. We didn’t gamble, really. It was the oddest thing. We had so much fun. I guess when you’re up $17 on your mom’s $5 in penny slots; life is going your way. Don’t even ask how my husband was doing on the other side of town loosing on black jack with Tanner (Ariel’s boyfriend). It was a girl’s good day and a boy’s bad day. When we finally met back up, us girls giggly and tipsy we were met with a bit of the grumpies. Then changed and back out for dinner. But then mojo was gone. Done. We all yawned through dinner and made it all back to our rooms and were all fast asleep by 10pm. And by morning we were packed up and heading home.
I’d have to say the highlight was that day with my sister, mom and niece. We were all so relaxed and just enjoyed the day. My mom and sister are a bit more planned than my niece and I yet they just went with the flow. And we flowed all day all over town. We went to this bar called Minus 5 and it was all made of ice. It was freezing and so fun! I ate my cup made of ice. I mean how often can you eat the glass that held your martini? Who else could resist that?
When we finally made it home, that is a long drive, we were greeted by a Thanksgiving meal that was Andi and Grandma’s surprise for us, and lots of hugs and kisses. It was a great way to come back home and we were so glad to be there.
I do have to say though if I could do a little soap box business. Ladies, you do not need to show the world that you have a short skirt. Strangers should not be praying to God you are wearing underwear. Also we can tell your boobs are big, you don’t have to show them like that. A little to the imagination is sexy. The goal is sexy not slutty. I get it, its fun to dress up, it’s Vegas after all. But when your skirt is an inch from your hiney and you are tugging on it all night long, you know that isn’t sexy. Any girl can find a guy, but it is quality that matters and fishing for a man in that outfit will get you noting but crabs. I meant that figuratively, but it could go literally as well. And getting that drunk is not safe. Not when you two girls are all you got, if you are both falling over each other on a bridge and a strange homeless kid is trying to “help” you, that is not safe. You have to work together, protect each other. Mom types like us can’t stop you and make sure you are not making a mistake walking with this strange guy taking you back to his hotel room. So yes its Vegas, dress sexy not trashy, get tipsy, not wasted (unless you have a safe friend) and enjoy your time. Don’t take home anything besides some corny souvenirs and a designer handbag.
Ok done, had fun, glad we went, but more so glad to be home!
Planking by Stitch
Wednesday, November 16, 2011
Love this one!
Working with (not against) a sleepy Lily
Saturday, November 5, 2011
Ok now I can continue, awhile back I was listening to a book called Winter Garden by Kristin Hannah, it was a beautiful novel that took real history from WWII and put it into a fiction about a family with a mother who experienced life in the Soviet Union when they were invaded by Germany. The book gets dark at times, because well it should; it was depicting times that most of us could never fathom. The line that came to me was “none of the mothers looked at each other, it hurts too much to see your own pain reflected in another woman’s eyes” and that was the line I needed to listen to again. And again. Maybe nothing too profound to everyone, but it hit me hard. I have been a special needs mom for over 9 years now. We never got that period of time where we thought our life was normal. Ok maybe those 3 weeks before her first seizure, but there was something not “right” in Lily’s eyes from birth so really we’ve never had a moment that everything is perfect with our daughter. In the beginning we had good attitudes. At least on the outside. We’d smile. We’d deal with each seizure each time of each day; tell people it’s our lot, it’s our blessing. Yet on the inside we crumbled when each disappointment hit. I went to a support group yet rarely did I share my heart. Did I let my tears show, let me just say the difference between me at 23 and at 33…. A lot more tears. I used to be afraid to show them, so I showed an exterior of smiles and bliss and complete acceptance, yet on the inside I didn’t feel that. I wanted my baby to be “typical” I wanted to her talk to me. I wanted her seizures to just go away.
One day I remember watching a video someone showed online to ask if it was a seizure or not and the minute I watched another child have a seizure that was not my own child my stomach felt like I had drank curdled milk, I wanted to vomit and I closed the video. I wanted to be a support for that mom, but I couldn’t do it.
Another instance was watching Extreme Home Makeover and there was a family with a severely disabled boy with epilepsy and I was watching the mom talk about how hard it is to care for her son as he gets older and I just sobbed watching this woman’s story. I sobbed as I watched me from the outside. I was overwhelmed with pain for her, yet looking back I know it was pain for me. Pain I never felt I was allowed to show, I could feel for this woman.
And much more recently last year when I went to Nashville to get away from my mess of a life, a marriage barely hanging on, I had to get away and Nashville was the place to go. My good friend Wendy lives there with her amazing family, her oldest daughter is the same age as Lily, we met online talking about how much seizures suck. Well on that trip Langan had a bad seizure, a long seizure that Lily used to have but it’s been years since I have seen them like that. Here I was feeling so proud and maybe a little jealous at how well Langan walks and gets around and feeds herself, but seeing her have that seizure and watching Wendy stroke her hair and comfort Langan telling her she was ok, I just couldn’t watch it. I went to go find her a hair brush. Yes me in my take action skills, getting a hair brush. I probably looked like Vern on Stand by Me. That is all you brought, a hair brush? Vern you don’t even have any hair! I brought it for you guys.
Sorry if that makes no sense to some/all of you.
But it was another instant that I couldn’t bare to watch.
In my life I can deal with a lot. A lot. But I simply cannot watch it play in front of me on anyone else’s face. When we lost Emmie last year, I was devastated beyond devastated. I think it was the worst death I had ever been around, yet I wasn’t a part of the family. It was a strange feeling because I felt I didn’t deserve to hurt so much over someone else’s loss. But watching her parents, dear friends of ours, live this hell was so hard. I wanted to take that hurt away from them. I wanted to make a world that small coffins aren’t ever made because there is no need, but because I can’t do that I just wanted to look away. It hurts too much.
“None of the mothers looked at each other; it hurts too much to see your own pain reflected in another woman’s eyes”.
I sit here starting at my screen drinking my coffee and ignoring the fact that even though I woke up at 6:30am on a Saturday just so I could spend some quality time with a word doc I already hear Oli yelling that he wants out of his crib. The same crib he knows how to climb out of, but he doesn’t until I say he can, I love that fact. You think it went like that with Andi Jane? Oh heck no.
So I digress, I look at my screen asking myself, what are you going to say next Kim? You have to pick this up. Find the positive, end it where you typically do. Where is the humor? But I have nothing. That quote mixed with my life experiences is all I got. It should go on my gravestone because no truer words have been spoken to me. My truth read in a book. No the book wasn’t talking about seizures and wheelchairs, it was putting children on a bus away from their parents sending them away to be “safe” during WWII. But it’s all the same. When you see your hurt played out in another’s eyes. Especially in another mother’s eyes, it breaks you.
So if we are experiencing a similar pain don’t be surprised if I say a lot of jokes, I skate around the issue and do my best to never discuss it. If we do, don’t expect a lot of eye contact. It just hurts too much.
Thursday, October 27, 2011
We had a heck of a time with Lily getting over that surgery. It was awful. 2 full weeks of pain and an entire week to get her to poop. It was exhausting for all parties involved. Lots of crying. For all parties involved.
She is basically back in action, yet we put her on Zonegran about 6 weeks ago and she is finally on full dose and the poor kids appetite is cashed. Like maybe some pudding and applesauce. If it weren't for carnation instant breakfast and pedisure I don't think she would have survived. She had to have lost at least 5 lbs and on a tiny frame already that is too much. Get this, she is again wearing the size 8's handed down to Andi Jane and Andi Jane is wearing Lily's 10's. What is going on here? I don't like this reversal. It was hard enough watching Andi Jane walk and talk by the age of 1 when Lily at 3 at the time still couldn't do either. It was hard when Andi totally surpassed Lily's shoe size and now clothes. I'm sure it happens with typical sisters, I'm what 3" taller than my "big" sister and always have been a size or two bigger so I know it happens, but it still reminds me that nothing is normal here. Sometimes it's nice to just pretend in my head our family is typical, forgetting seizures, and wheelchairs of course, but now Andi Jane is just full on growing bigger and 2 years younger. I just don't like it. I remember as a kid wishing on every birthday cake for my brother to be "typical" or to walk and talk like us and every year it didn't happen. I just worry that I am still doing that to this day just over my kid. My child whom I accept fully as she is, but sometimes that yearning for "normal" is overpowering even to a wise woman who understands her lot in life. Although I do understand come teenage years I may be grateful for just one typical girl ;)
Things are crazy, every day we have something else going on. Halloween is coming up then of course the holidays so I'm fairly certain time will become more and more of a luxury.
Speaking of Halloween I have yet to figure Lily out and Andrew and I will be attending an adult party (we haven't done one since before Lily) on Saturday and we haven't a clue as what to be. Tonight is date night supposed to be getting costumes, yet he said we're attending an HOA meeting instead. My knight in shinning armor.
I have so much to share but they all deserve a post of their own not just a jambalaya of words and thoughts (now I'm hungry) so I am going to challenge myself to remember myself and my passion and get back to what I love doing. I deserve some writing time.
Promise to try harder....
Monday, October 17, 2011
With Lily's surgery and fall break I've had no dates with my husband, no breaks with my friends. If I am at work it is with Lily. Like I go potty and stare at a dog and two kids. No breaks.
So we find out some amazing news that a good friend of ours doesn't have cancer after a lot of testing. It was hold your breath waiting then when she said she was all clear it was time to celebrate! Our plan was to go to a bar just a mile or two from home, my friend Kim picked me up and it was time to celebrate! Kim shows up and I am not ready of course. She waits for me, then I kiss my family goodbye and get ready to have a drink or two or five. Just kidding. Just a few. So we are on the road our typical banter of what's going on, I get a text and I start responding, when I look up I see two cars collide. I don't think we even said a word, Kim just pulled over and I grabbed my phone. I dial 911 and start telling them about the accident. Kim takes off to the car where there is a young teenager jumping up and down in a panic because her mom is pinned in the car and it has caught on fire. I am telling the 911 operator to hurry up, the car is on fire! She is screaming! The lady was screaming! Kim is trying to get this lady out of the car, passerby's are throwing milk, juice, soda on the fire, someone had a fire extinguisher that hardly did anything. And I stood there on the phone to 911. I look over at Kim hugging this frightened young girl. I see Kim checking on the passenger in the other car. I see her across the way talking to others. I was on the phone with 911 still. Finally fire truck comes and gets out the fire. We don't think the woman was burned but her legs were crushed and it took an hour for them to cut her out of the car. The police officer comes over to me and asks me what happened. I said the car came out of nowhere. I don't know what happened. I tried to tell him then I say I was texting go find my friend Kim, she was the one driving. He goes and finds her and talks to her and comes back to me to say "you were right, your friend was a much better witness". "Yup" I told him, then proceeded to tell him this is really taking away from our girls night and he sounded like he wanted to be invited. Silly officer. When I finally got reunited with Kim I hugged her and told her how proud I was of her and how much I loved her. She was a freaking hero and I just called 911. And yes this was awful and scary and how am I relating this to a Phil moment? I don't know, I just think Phil would picture himself a hero in situations. I know I thought I would have acted faster. The car was on fire. My instinct was not to run into a burning car. I would have loved to have been a hero but I stood there not knowing what to do with my hands. It was a Phil moment. Or maybe a Mitchell moment. But whose ever moment it was, it was really mine and it was just funny, later, and not at all for the scary accident and the poor woman with crushed legs and her poor daughter who saw something really freaky, but for me it was like... c'mon Kim that's all you got? A cell phone?
Monday, October 10, 2011
She is at work with me right now watching netflixs being a sweet but uncomfortable girl.
So glad I have the next two days off. I love working, but when the kids are out of school it is more work getting to work than actual work.
Sigh. So pray for poop. We are hoping to get away this weekend by visiting my niece Ariel in Flagstaff (she attends NAU). We are excited for a little getaway as long as Lily's bowels comply.
Friday, September 30, 2011
We got to our room around 4pm. Yes, I said 4pm..... and our nurse was a nurse that used to come fill in years ago as our home health care nurse. It was so good to see a familiar face and I knew we were in great hands. The hospital had built a whole new tower and Lily was the second patient in this room. It was quite beautiful for a hospital and although it wasn't exactly a staycation, it didn't feel like prison either. The nurses were all incredible and I will say it again, pediatric nurses are like no others. They have hearts bigger than the body that stores them and I am grateful to Phoenix Children's Hospital for staffing the best!
Lily was up off and on and was drinking and ate some but when I asked for pain meds I didn't realize we couldn't do it through the iv anymore and it didn't go well. Lily spit it out everywhere and we had a difficult night that night. In the AM she was drinking enough and wetting enough to go home and we were home by 10am. I got her meds at our pharmacy (Target, where every time I go there with Oli just to shop he points to the pharmacy and says "LolyNanna!" that's sad) and asked them to flavor the pain med as much as they could and it has helped some. I also have to be a big jerk and plug her nose and blow in her face to make her swallow. It's awful :( but when I let her go longer than 5 hours she is so sad it is too much to bear so I choose being a jerk over watching her suffer.
Yesterday wasn't so bad she drank pedisures all day long, ate applesauce, pudding, naked juice, and yogurts and she seemed to be in a decent mood.
Wednesday Andrew had to head up north to work on a house and I scheduled the surgery fully aware of him going out of town, so I had Lily's new caregiver come Thursday so I could take Andi to gymnastics and had her come today so I could get some errands ran. Plus I think Lily wanted me to leave with her brother and sister. They are so loud.
Today Lily woke up with some really dark circles all around her eyes. They almost look bruised. She has been a lot more mellow today and while she's been sleepy anyway, even more so it has seemed. This AM I got a call from my friend Nancy who said go online to Texas Roadhouse and look at their menu and let her know the order for our family and she'll bring it over for dinner! Her hubby is the head honcho at the one by us and that place is yummy! It was such a blessing since Andrew is gone to have dinner brought to us. Nancy, who watches Oliver 2 days a week, knows that Lily lives and breathes for a loaded sweet potato from there and that is what she brought her. I was excited to have Lily eat with us tonight because she hasn't since Monday, but when I put her in her chair and gave her a drink she just started crying, and this is the saddest cry she has ever cried. I put her back on the floor, gave her another dose of pain meds, it had only been 4 hours, I wanted her to go longer, but apparently she still needs it around the clock. After 30 minutes I sat her up and she ate the whole darn thing! But while we were waiting for the meds to kick in I was eating with the other two, but Andi said she'd rather lay down with Lily than eat. So I ate with Oliver while the girls held hands and listened to Jewel Twinkle Twinkle. It was the most precious moment. I just love the love that is shared between these two girls. I often will get bogged down thinking what their relationship *could* be, but then I see moments like this and it takes my breath away and I know their relationship is exactly as it *should* be.
Daddy comes home tomorrow and I'm really looking forward to having him back. He has been very missed. Very. Thank goodness for Skype! I'm like a walking ad this blog.... it's a real shock with my quality of writing I am not sponsored.
So from what I heard we should plan on the next several days to be more of the same. All in all she is being an incredible trooper. I know I would be crying in my room demanding silence. I would never get it, but I would certainly complain louder than my sweet girl.
The other two are down for the count and it's only 8:30pm! It's time for Lily's night dose and for my dose of wine (barefoot riesling cheapest one at target cha-ching ;))
Monday, September 26, 2011
You have to insert it because I can't do it myself. Ugh. Thursday I miss a call at 4:30pm to schedule Lily's surgery, I listen to the voicemail write down the number and call her back only to get her voice mail that she left for the day. So did you leave my message and just run out of the building like it was on fire? How did she go from there to schedule to gone... things we may never know.
Anyway, I call her Friday am and I tell her we have a whopping 2 1/2 weeks off for fall break and how lovely it would be to schedule during that time, she puts me on hold and says there is no way the Dr can do it then, I'm thinking great they won't do this until November when Lily is in the middle of one of her common fall/winter long colds... but no she says can you do Tues the 27th? Gulp.. yes. I guess. Ugh. It is here so quick :( I'm just in knots. I know of 4 people 2 adults and 2 kids who have had them done fairly recently the 2 kids were very recent and I'm scared for Lily. I hate to see her uncomfortable and from what I understand it can be very uncomfortable. I know to keep her up with the meds and that helps a lot. But still, sucks.
I know it needs to happen though. Our family all stayed in a (I'm struggling here with a or an, an is phonetically correct just sounds wrong, I will leave it as a and let you all either correct me or just judge me on my poor grammar) one room hotel room this weekend to go to a wedding and that poor girl wakes us all.night.long. I pray that this will improve her sleep some. I pray that it is mostly from the tonsils and adenoids and not all neurological. I pray she handles this like the trooper she is and she is in wonderful hands. We will be staying in the PICU Tuesday night and will hopefully be home by Wednesday. It's such a juggle with 2 other kids. Andi has half day on Wed and Thursday and I really hope I am able to swing the parent teacher conferences for both girls on Wednesday, but we have it all figured out and we should survive. Just like with everything else. My sweet girl has to yet again go under anesthesia as well as undergo another uncomfortable recovery.
I will hopefully have wifi at PCH and be able to update every one.
Keep her in your prayers please.
Friday, September 16, 2011
I wonder why they don't want to check mine. I am fairly certain hers can handle it better than her moms.
Anyway, so no news there. My friend Kim said I should schedule it for months out just so when it actually happens months away I won't be annoyed, it will be ontime. Spoken like someone who knows the fun of dealing with lots and lots of Doctors.
We went to see again our new neuro, but I think this one will stick. She was very smart (duh), kind, gentle and beautiful. Not really want you expect from a neuro/epileptologist. She wanted a plan, not just a short term plan, but a long term plan as well. We are trying Zonegran again, it's been years since we tried it. We will also be putting Lily on the modified Atkins diet which is not as extreme as Keto, but a lot of times just as beneficial. I am starting that after her tonsils are removed obviously. Maybe not obviously for everyone, but when you get your tonsils out you eat lots of popsicles, ice cream, ie cold sugar. Not really so much items from a high protein diet. So there, now you know obviously.
If in a few months if the Zonegran and diet are not stopping the tonic, tonic clonics and drops then she wants us to seriously consider going ahead with the full callosotomy.
Quick back up when Lily was 2.5 yrs she had brain surgery, a corpus callosotomy, but they only split her about 1/4-1/2. They are essentially stopping the right side from "talking" to the left. Like a serious break up. They typically just do half in hopes that is all they need to do, but sometimes especially in kids with LGS (lennox gastaut syndrome) they do better with the full callosotomy. I am very anti this. I guess basically because it requires cutting my babies brain in half literally. I came in with guns blazing ready for this option to be brought up yet again, what I didn't expect was for my husband to put my guns down and ask real questions that made me consider. And just consider the option. Andrew hates the amount of meds she is one. As do I, of course, but he is looking at the long term effects more than I do I guess. The surgery done properly will not change anything about Lily. My biggest concern. They won't be removing anything so she would still be Lily. Prior to the first surgery Lily had 6 tonic clonics a day making the surgery our only logical step, but she isn't that bad now so it is hard to say yes to this next step, but considering how much less her seizures are with the 1/2 maybe the full would eliminate those seizures and she wouldn't need to be on that many meds anymore. I always thought it was the Vigabitrine that stopped her tonic clonics, but maybe it was the surgery. I don't know. The surgery doesn't help immediately right away so when she came out of surgery seizing that wasn't a huge disappointment, let me clarify IN THE MEDICAL WORLD, to me it was the biggest sucker punch life had ever dealt me, but maybe knowing more ... maybe asking more questions....maybe more research. Maybe, just maybe, just just maybe, it could be in our future. BUT what I am praying for is that that getting her tonsils out with improve her sleep and her seizures will be better after good sleep and then the diet will help as well and we will see enough improvement to get her down to one maybe two meds. So friends I ask you all as well to say that prayer for Lily, but I also know God is in control and if the surgery will be what puts Lily's brain at rest then I pray that option will be made very clear. What I have been explained over and over again the tonics and tonic clonics are the seizures that most often take lives and I am not going to let seizures win. I will not. We have fought seizures for 9 years starting Sept 21 to be exact and we won't quit. Nope not ever.
So please continue to keep Lily in your prayers. I know many of you have since the beginning and I know God has held our hands through each step, even on those days I let go of his hands, and on those days I pushed him away, and on those days I clung to him. He never left our side. I know he won't and have full comfort in knowing he will see us though.
So that is my update for now. Work smerk... just kidding Dad. I am back to work! Yup... just working away...
Wednesday, September 14, 2011
This service is called Barefoot Sunday and it is as inspiring as a church service can be. We learned what Jesus was all about when he walked this earth and what he did for others. We were challenged to convert our blessings upon others. People that some may see as invisible (or rather people that exist that some never see). People that many ignore. People that may not be like us. We heard a quote by Bono that ended like this "God is with us, if we are with them". What a time to look into our own selves. Look into our own selfishness, time for us to walk barefoot and feel what the hot ground feels like on unprotected feet. Our family went to Chipolte for lunch after that service and we were all barefoot. All we did was hop from the hot surface to the hot sidewalk to the cold a/c filled restaurant then the same scenario back to the car and home. It was hot, our feet burned and we experienced that for a few minutes. How many generations live their lifetime never with shoes on their feet?
I felt so inspired to do more. I give my blood every 2 months. We serve in our church nursery, but I want to give more. Get out of my comfort zone and do more! We signed up for Live Love next Saturday where we will go into a local neighborhood that needs some caring on and I signed up to build in Mexico in November, I will be sleeping in a tent. That, if you know me, is enough out of my comfort zone. I HATE sleeping in tents and sleeping bags. Ugh. But see that is why I need to do more. The old me would be far more concerned with Missoni being at Target, this new girl only looked online at those beautiful clothes.....sigh...so beautiful. You know I fell in love with Missoni when a stylist brought it to a editorial shoot I was modeling in when I was 15 years old. I though one day I will own a piece from that line. But 17 years later I still don't. But I know that my life will go on even if I never do get a piece. But it would be fun and maybe when we are on baby step 4 I will get a piece, thanks for totally changing my whole perspective on life Dave Ramsey... wow squirrel moment.
Annnnd we're back. I want to do more. Give more. I am a blessed woman who has a husband, 3 beautiful kids, a home, air conditioning, food in our fridge, even a swimming pool, we are blessed people and there are so many out there who are not. My thinking has changed, I've slowly been changing, but I feel like I recently took a giant barefoot leap and look forward to seeing what other changes are about to come to this family.
My space bar isn't working well, neither is my e, the x is missing and the ; is like a loose those just hanging there, I am telling you that b/c my writing doesn't feel very fluid and for that I blame a 2 year old.
Friday, September 9, 2011
Tuesday, September 6, 2011
So we showed Oli this clip and he LOVES it and likes to mock it.
Here he is. It is dark, sorry, but all you really need is sound.
Friday, September 2, 2011
Half the time there is obstruction and that is why he agrees the tonsils and adenoids should come out. He said it won't help her completely, but it will help and she may sleep better.
I have been praying that we will be told what we need to do for Lily so I am going with this as it is supposed to be. But I am not gonna lie, I do not want to put her through this. Breaks my heart.
I have been around 3 people who have had those taken out in the past years and they all said it hurts. Hurts bad.
As a strep throat every year kind of gal (3x in 2010) I know that a sore throat can bring you to a crying little girl. It was me last year, just wanting death to take me away. The only comfort is I know she will get good meds and we will have to keep it up every 4 hours and maybe that way if we are proactive, she will not be too miserable. But with no caregivers right now and not even a sight of one in the near future, I am a little worried about taking good care of her and not letting the crazy other two make things too hectic for Lily bug. I was thinking we should do it during fall break but then thought her home all week long with her brother and sister all house bound? Maybe not such a great idea. They should be calling to schedule so we will get that done and plan accordingly. She will stay one night in the hospital if all goes well, so that is actually a good thing. I feel better having help from nurses after things like that.
Pray for Lily and her mama's heart as we get ready for yet another surgery.
2012.... please tell me you have a rainbow with a bag of pedicures and facials at the end of it. Please.
Monday, August 29, 2011
So much to back up and update everyone one. When we took Lily to the new neuro he wrote her a rx for Depakote, it's a recycled med but from 2002, I didn't want to try a new med on vacation so we started 2 weeks ago and was going up slowly. Then the screaming started. Happy/mad screaming and lots and lots of crying. Not eating. I understand changes happen on meds so we were pushing through but by this Saturday she was just screaming and still seizing and Andrew and I made the decision to pull her off. If she is going to have seizures she isn't going to be taking a medication that makes her miserable on top. Maybe we should have stuck it through, but honestly my gut rules now and that's that. I'm honestly contemplating keto again, but I hate feeding Lily foods that aren't fun for her. When you have such few pleasures in life and you take it away, that just seems unfair. Seizures are unfair.
Last week we finally got into to see the Pulminologist which was a a whole lot to do about nothing. She reviewed her sleep study and said she had seizures, apnea due to neurological issues and apnea because of obstruction and now we need to see an ENT about getting her tonsils and adenoids out (I have such a hard time with that word, I want to call it android, random police gonna take me away). Anyway we have that appointment on Thursday. Pulminologist said if she can sleep better (which right now her sleeping is off the hook awful) by getting rid of the obstructions her seizure threshold may be higher and she may have less seizures. Now this isn't our first rodeo, I am not thinking for one second a cure will come as a result of loosing a few body parts, but it does make sense that is may help. The child is the worst sleeper ever so maybe, just maybe a full nights sleep would make a world of difference. And of course if this doesn't work then we move to C-Pap machine (ha). (HAHAHAHAHA) Right. The child with more sensory issues than teeth. HA.
I will update after that on Thursday.
I also wanted to update on Andi Jane also. We tried a medication for ADHD and it was awful. She was grumpy, falling asleep all the time, it was like she is PMSing all the time. I took her off the medication and called the Dr. and said I think we are going to try this thing naturally. And we have been and it is going pretty good. She has her moments yes, but she is in a class with a teacher that is really working with her and it is making an enormous difference, she is also working on control at home. She will always be a highly energetic child, she will probably always struggle with controlling herself, but at least she now understands and can work on it. I took her to a birthday party on Saturday and she said "Mom, Sarah asked me to stop hugging her so I did!" Yes small victory, but a child that has no respect for personal space, that was a huge accomplishment. I said "I'm glad you were able to tell Andi that you needed space, Sarah and Andi I am proud that you respect Sarah, good communication you two!" and they looked at me like I had a pot of flowers on my head.
We got back from our trip on a Friday and Andi was complaining about her tummy quite a bit off and on, but kids with tummy issues, you never know if it is nerves she missed a whole week of school and was coming back. Or we were on vacation eating different foods and on a different schedule. Saturday I was heading up north for a wedding shower and Andi wanted to come, but then she was doubled over and just feeling awful. I got her kids pepto but it would just come and go and she would be in some major pain. Finally by Sunday night she was miserable. Yes I waited til Sunday night. I said to her ok Andi if we go to Urgent Care they may draw your blood and it may hurt, she said I don't care I need a doctor and that was it, we went. Long story short X-Ray showed the poor child totally backed up, I mean almost to her stomach. It was so sad. Dr. said that really hurts. Poor kid. We had to clean her out. No need for details, but it was so sad to me. We spend so much time worrying about Lily and her poops, you just don't even think about your 6 year old. But it is fun being able to tell Andi she is full of poop and mean it.
Oliver is good. He is talking more, not too clearly, but he sure talks a lot. He says crunk using his dutch and german roots with the beginning sound, still wondering and waiting to see if he needs to get into speech therapy. He pooped and peed on the potty all day Wed and Thursday when I stayed home with him, he was pretty excited with himself. This was all on his own accord by the way. He also uses the doggy door and pee's outside. If that says anything.
So these are all the things I wanted to update you all on and just never find the time to do so. So much going on so little time.
You know 3 kids really changes things, I didn't think so in the beginning, I am noticing it much more now. I'm not complaining, just so so busy.
Saturday, August 27, 2011
Happy Birthday LilyAnna Blu! We love you!
Wednesday, August 17, 2011
3 words to describe the past week is Blessed, Overwhelmed and fabulouslyfun (my blog, my rules).
Blessed by wonderful people with big hearts! Our vacation started by getting to the airport at 5:30am with 3 kids. My niece, Ariel, met us there and there was no parking, had to go into overflow lot, had to take shuttle with wheelchair lift, ie we were getting late and I was getting stressed. But let me just say Allegiant Air at Mesa Gateway had a gentleman by the name of Eugene aka Gene that might as well have worked at the Beast’s Castle, he did everything short of singing “Be our Guest” to get us on that airplane. He was incredible and kind and just plain sweet. Him, plus Ariel and Andrew taking our luggage with him made this trip smooth sailing. We were in Rapid City by 10:20am and all in great moods. Not common for me and traveling with kids. When we got off the plane I was thrilled to see my hubby, father in law and Ariel’s boyfriend, Tanner, standing there waiting for us and excited to get our vacation started. We went to Mystic Hills and said our hello’s to grandma Cheryl and the kids just let loose. I have to say if you are ever wanting to vacation out near Mt. Rushmore you have to stay at Mystic Hills. We all hadn’t been there since May of 2006 and it was so great to be back! They have RV spots to rent, places to tent and cabins to stay in. They also have a restaurant/bar that serves good food. It really is a great place, can’t say enough about it. The kids loved it there. So much fresh air, it was cool there, they have a huge lake with ducks to feed and even a cute little paddle boat. Since it was Sturgis Rally time they were really filled up and so a wonderful local family, Curt and Denette, offered for them to sleep in their toy hauler while letting us stays in their beautiful 5 bedroom house! What a blessing! There were 7 of us and we all had our beds/rooms to sleep in. Lily got to sleep in a comfortable futon and Andi wanted to sleep with her. We got to see our good friends Dave and Erin who moved back to South Dakota from Arizona and got to meet their newest addition to their family.
Monday Andrew, Tanner, Ariel, Oli and I ventured into Sturgis during the day, Lily and Andi Jane stayed back with grandma Cheryl and I am so glad they did. All I could think was I had too much clothes on and why do people have their kids here… oops I did, but at least he is 2 and will never remember all those painted naked bodies. It was quite an adventure! It was fun to see though for sure, all those bikes! It was pretty surreal. But I was glad we were staying 20 miles away at Grandma and Grandpa’s place.
Tuesday was the day of the run, after we sold a ton of raffle tickets and got everyone signed up we went on Lily’s Run! Curt and Denette have a rental company for outdoor vehicles and let us drive the 4 seater Polaris RZR and we were able to put Lily’s car seat in it and Andi sat next to her in the back. It was a blast! We followed 50 some bikes who were all riding for Lily! For our Lily! They all had their green CDKL5 band on their wrist and it choked me up several times to see the support for a little girl most of them didn’t even know. Lily LOVED that ride. She laughed, she smiled and every time a motorcycle rode by with its loud engine she giggled. It was all so intentional and just filled our hearts with joy. We just don’t get to do that kind of stuff with our kids and to have a week of just pure fun was so good for the entire family. Oli got to hitch a ride with Grandma Cheryl and Papa Steve in their truck. He was included as well, no worries. We made 4 stops and by the end all the kids were in the truck and Andrew and I were pelted with rain, but we laughed the entire time and just had an amazing day. During one of the stops an older gentleman who appeared to maybe have drank a little too much came up to Lily and me and said “don’t worry, God will take care of her” and I said “he already has”. And I meant every bit of that. It may have been one of the last places I thought I would see God, but he was there in Sturgis South Dakota! After the run we had a pulled pork dinner, supplied by Mystic Hills and following dinner was the auction. Oh my goodness what a hoot the auctioneer was. He was getting $100 for t-shirts, $20 for a rock! He sold a kiss on the cheek from Grandma Cheryl for $100! Andi Jane joined Grandma with that expensive kiss and kissed the winner on the other cheek. We also had real items like leather gloves, handmade blankets, a stay in Greer, awesome rings from Nightrider donated from my friend Carrie from Jr. High! We keep in touch on facebook and she saw our run and wanted to donate 2 rings! These are awesome rings too, they went for a high price and seriously people you should check out their website, it is sweet! Andrew wants a ring for the next gift giving time. Our anniversary is tomorrow, so it might not happen by then, but maybe Christmas. After the auction was done we had Lily pull the raffle ticket for the bike. We had sold quite a few online, but mostly all in person at the campground. The odds of the winner actually being there was slim, but you wouldn’t believe it, he was there! And he was the guy saying he really wanted that bike and may buy it off the raffle winner. When Lily pulled his name and Grandma Cheryl went over to him to hug him and congratulate him he said he wants to donate it to the auction. I doubt there was a dry eye there. What a tremendous sacrifice. OVERWHELMED! The bike went for $4,000 in the auction! I forgot to mention the poker run winner and looser also won a cash prize but donated that back and the 50/50 raffle winner donated his money back.
The couple that organized the run was Michael and Chris Burgen and they do this type of thing yearly getting toys for disadvantaged children. They even rode a ton of toys to kids in Joplin, MO this year. They were so gracious with their time, their knowledge and their support. I just can’t say enough about everyone who made it out. I want to name everyone personally but I can’t. Just know there were many hands taking part and each one meant the world to us.
So when I say OVERWHELMED I mean OVERWHELMED! We don’t have a total yet on the run, we still have to figure out the total bring in, but it was so successful! So BLESSED SO OVERWHELMED!
The next day we headed to Colorado, long story short we had 7 people ride from South Dakota to Colorado is a truck. Andrew laid in the bed with blankets, a sleeping bag and 2 tylenol PM’s. Funny now. Not so much back then.
We got to spend the rest of our trip at Andrew’s brother Jeremy and Andrea’s in Windsor, CO. And what a great way to spend the rest of our trip! Our nephew Mason is 6 months and crawling and it was the first time we met him. That made me sad, but so glad we finally got to formally meet. It was also so fun to see Oliver and Jayda who are only 11 days apart! She can talk circles around him, it was so funny. Thursday they took us out on the boat and we spent our day there. What a great day! The kids had fun, Lily enjoyed it so much! We just tied her car seat to the captain’s chair on the boat. Andi got to ride a jet ski and I got to swim in the lake. Something I just love to do, I love swimming in natural water. Maybe that makes me weird and although it was cold, it is just so fun! Andrew got to wake board and not too bad for an old dad, he still has skill! Then end of the night was spent with wine and Chinese food. And Friday we said our goodbyes and Ariel, the kids and I flew out on Allegiant in Ft. Collins. Not as great as Mesa Gateway, but no point in complaining. It was a great vacation. Absolutely wonderful. So great we can’t wait to do it again!
I will make a formal announcement with the money raised and more pictures, but I just wanted to share our trip personally like I always do.
FantasticallyFun! Blessed! Overwhelming!
Thank you thank you thank you to those who helped along the way, we got help putting the bike together from Liberty National Bank in South Dakota, they paid for casual day and the money went to help us fix up the bike, thanks to our sister in law Carrie for setting that up! We had help from friends The Porter’s, the Abbot’s, the Grimes’, grandma and grandpa Nothdurft, the Yaegaer’s, Tanner Stump, the list could go on and on!
Thank you for those of you who purchased raffle tickets, and those who made it out that day. What a fabulouslyfun, overwhelmingly blessed week!
Saturday, August 6, 2011
The raffle tickets are selling online and I am sure we will sell a bunch in Sturgis! This is really exciting event to take part in. I did want to mention, we are not staying in Sturgis. The kids will probably never even see Sturgis, unless we go during the late morning one day, we will be quite a distance from there. So I know those that know me know I wouldn't let my kids hang out with saggy milkers (quote I got from a friend that I just loved), body painted naked ladies of the Sturgis Rally, but if you were referred to my site and don't really know me, rest assured. Although I will do all in my power to go out one night and see all those saggy milkers for myself, rest assure that my kids will be safe and sound with a family member in the house we will be staying at.
The kids and I fly out Sunday at 7am. I didn't say be at the airport at 7am, I said flying at 7am. I mean, kids up, loaded into the van, unloaded at the airport, wait in line for seats, go thru security and then on the plane at 7am. Wish me much much luck. Thank God I am bringing my niece Ariel and she will fly with me and help out this trip. I would not have been able to do this alone and I really didn't want to drive with Andrew and the kids. So while it will suck getting there so early, like 5:30am early with 3 kids, it will also be nice to get in at 10:30am and have the whole day there. We plan on staying thru Wednesday, the run is Tuesday, then we will all drive to Ft. Collins and stay 2 days where we finally get to meet our new sweet nephew Mason! He was born in February and we have only seen him thru pictures. We will fly home from there on Friday, thanks Alegiant Air!
The new neuro was nice. He was on time and very thorough, spent an hour with us. Most of her records did not make it to him so we got to go over almost 9 years in that hour. Andi went all ADHD in there and was hard to manage, there was no way I would make Lily's appointment in Phoenix and get to school in time to pick her up so I had to bring her along. I mentioned how bad the seizures were and he rx Depakote since it helped for awhile the first time we tried it. I have the script sitting on the kitchen counter. Since I got her dose back up to regular on the Clobazam she has been doing much better. He also bumped up her VNS so that might be also what is helping. There were a few things that bothered me and the timing was just all wrong I guess so it bugged me more.
Backing up I was told we could use Make A Wish for Lily. Now I always thought of MAW for kids with cancer who aren't going to survive. I think it is an amazing organization and just never thought it would be something for Lily. So when I kept seeing CDKL5 families talking about wishes, I inquired. Some used their grant for equipment needs, vacations, etc. I looked into it and most likely CDKL5 is a qualifying disorder. Now as you can imagine that didn't really thrill me. I mean, it would be nice to have a wish granted, but the meaning behind it means Lily's life will not be a long one and knowing there are girls in their 20's with CDKL5, I guess I just trust that will be Lily as well. But then again, we don't know anyone older since this diagnosis is so new, I just watch these older girls with so much hope and inspiration and want to see them in their 40's and beyond. That Wednesday morning I got the call back from MAW Phoenix chapter and she was asking me questions and was going to follow up with our Pediatrician to see if she qualifies.
Back to the appointment, the Dr. says at the end, "did your previous Neuro talk to you about sudden unexpected death" and then started talking about how an epileptic has a higher death rate than the average population etc. I said he never said anything to me, but I don't think he felt like he had to. (in my head I was thinking like you don't have to) I get it, he was making sure I understood the importance of seizure control. Like that hasn't been my mission, my passion, my life's desire for Lily for these past almost 9 years. He recommended going back and completing the corpus callosotomy (brian surgery) and I was very negative towards that option and maybe that was his angle to push the surgery, she could die without, but she could die with it and I think a part of me died that last surgery and I am not ready to let more of her or me go. But I think after he just sat there and listened to me rattle her history like I was a medical professional myself, I am not bragging, I really think I could have my doctorate in neurology if given by life experiences. OK maybe not, but at least enough to be a PA. Anyway, my other neuro knew I KNEW what can happen. What could happen in her bed while sleeping at night. While at school away from me, on the school bus, during meals. I know what COULD happen to our precious girl. I just spoke with Make a Wish for heaven's sake. But if I take every step in front of me thinking about what COULD happen, I'd never get anywhere. I take my strides into a foggy future with long quick steps. I get it, I really get it, this was important to him to share, but I won't tip toe around this world with what COULD happen following behind me.
So we go to South Dakota with a bike to raffle, a bike run to run, an auction to auction with purpose and meaning. We want a cure. We want in the future a little girl with CDKL5 will get a newborn screen and when she tests positive for CDKL5 they will give her medication that will keep her from ever going to a Dr. letting her parents know that at any moment a seizure could take her life.
So if we get a wish granted and when that day comes where CDKL5 is cured I will write MAW a huge check giving the money it took our wish to be granted back in full.
So wish us luck, on the flight, on the raffle, on the run and the auction, pray for safe travels and goals to be obtained, and some seizure relief while we are far from home.
Thank you to all of you who support us and love us.
Here is the bike in it's finished form
Wednesday, August 3, 2011
We went low on clobazam again, my fault. We get it from Canada and every time I call to order it they will call me back the next day on my house phone, I get the message after they close, call back the next day and then they ship the next day. Still my fault, I know this and really need to call sooner. But my middle name is procrastination.
Anyway she went from 1.5 2x a day to .5 2x a day for 2 days while waiting for it to show. I knew seizures would act up during that, but she's been back on her regular dose since Monday night and this morning was drop seizure then scream and cry NONSTOP she then got the hiccups then went into a grand mal and then she seemed better. I know weird. It appears the GM stops the drops though. But she was doing great in the beginning of vamping up the VNS, like best she had been in a long time, THEN it seemed like the higher we went the worse she was getting. Is that even possible? I am just so tired of seizures. So so tired.
It is always a great reminder though of what we are raising money for. What we are fighting for. When I think about Lily's life I think she is a happy little girl and that is what keeps me going, but mornings like this make me wonder how happy can she possibly be? I mean she cried herself into hiccups. She has been grinding her teeth lately and haven't done that in years. It strikes me as stress. I don't know if that's true, but I don't want to think of her stressed. Ugh. My baby girl.
We meet the new neuro today at 1:45pm. Praying he is wonderful. I had such a great relationship with our last guy, for 7 (!) years, so the bar is set high.
We head out to South Dakota Sunday, the girls will miss school all week but it will be worth it! The run is on Tuesday. Please look at the top of my blog with the pages and click on 2nd annual Lily's run for more info and how you can buy a raffle ticket for the refurbished Harley my husband has been OBSESSED with for the past 6 months. Watching him give that away might be the saddest and funniest thing to happen this week. He loves this bike.
We have had so many people take part and help out with the bike either financially or physically and we can't thank you enough. We are thrilled to have this opportunity to fund raise and I can't tell you how important it is. Kids shouldn't have to live like this. I want all our efforts to make the future children with CDKL5 to have little or no affects from it. I want our life to serve a purpose and this is it.
Monday, August 1, 2011
Then Sunday I finally wore him out and got Andrew to buy the chalk paint and paint our cabinets. This all stems from when I saw the fridge on Good Luck Charlie, I was like what is that? A chalkboard fridge? It's amazing!
I posted on facebook, how do I get one of those and apparently there are lots of blogs of how to do it to your fridge. I tell Andrew, we have to do this and he thinks I'm insane. After much debating I agreed that ok, painting our fridge is a bit extreme, so how about some cabinets and he agreed. Then it just took weeks of hinting, suggesting, nagging and begging but Sunday after church and lunch our family of 5 went to the depot and for $15 for the paint, 2 tiny rollers and a couple brushes we had our supplies.
Let me first say I am not even trying to pretend I am a craft blogger. I don't even read other crafty bloggers. All it does is show me my drastic failures as a woman. I like crafts, I think they are fun. For about 20 minutes. So I am just sharing this because I think it is pretty cool and it would have looked far worse without my husband who just so happens to be a paint contractor who has been painting homes for 10 years. Need a quote ;)And I have to be honest, I can probably name 80,000 things I'd rather do than do a home improvement project with my husband, like say a needle aspiration in my thyroid, but I knew the outcome would be worth it. And this was coming off the heels of putting a trampoline up with him just on Friday so that should tell you how much I wanted this thing.
So here we go, I don't really have a before, he started painting before I knew it but here is during and after.
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