Friday, July 30, 2010

Thursday, July 29, 2010

Sunday, July 25, 2010

Twas the night before Kindergarten

Well things are a bit crazy at the moment. The fundraiser is moving along. School starts tomorrow. Andi has her lunch packed and in the fridge. We won't know if she can ride the bus until August when they know the routes for sure and if there is room for her. It will not be cool if she can't ride the bus, but we will adapt like with everything.
I'm not in the greatest of moods right now. Nothing to post about. Feeling a bit blah.
Lily's seizures are out of control. She did good for a week after we upped the meds in the hospital, but they just came back. I am finally just realizing this is how CDKL5 and LGS works. Periods of seizure control and periods of not. Par for the course. Just sucks.
I wonder what Ollie and I will do during these days. With out Andi entertaining him he may not know what to do.
I can't believe this is the night before Andi starts Kindergarten. I can't believe Lily is in the 3rd grade. This seems so surreal.
Photos will be posted tomorrow!

Thursday, July 22, 2010

School in?

Wow...I am hardly over the fact that Lily is in school and now we have meet the teacher tonight for Lily AND Andi Jane. What? How did this happen? I used to joke and say "are there any better collaboration of words in the English language than All Day Kindergarten" but now that it is a mere 4 days away, I'm a wreck. With Lily I knew she was in a safe place. I knew she was picked up at home, taken off the bus by her teachers aide and in the class with a ratio of 2:1. She is safe. Every time I show up she is working, never just hanging around except for after lunch when she gets bean bag time. I knew all this and I was still worried about Lily going to school. Now cut to Andi Jane. She is 5. Not even 5 1/2 . She is going to be in a class with I am sure 20+ kids. She will have to go to the cafeteria and eat. She can be subjected to mean girls. She may be a mean girl. Oh my gosh...I am nervous. What if the teacher tells me she has ADD? A serious concern of mine. What if she can't keep her hands to herself? What if she is such a chatty Kathy she gets sent to the Principal. What if she gets lost? Oh my gosh. What will I do with Oliver all day with out Andi Jane to play with him. Oh my gosh.
Yup that is how I am leaving this thing. Oh my gosh.

Monday, July 19, 2010

FuelingGood.com VOTE!

Click on blog title. You do have to register and then put in search IFCR. It is a few steps, but it is worth it! Thanks!
FuelingGood.com

Friday, July 16, 2010

Catching up

We are finally home after a crazy few weeks. Holy smokes we were living like rock stars! Well rock stars that travel to remote places and go to bed at a decent time. And don’t do drugs. Nor sing. Yeah we were just like rock stars.
After Lily and I shacked up at the hospital for two days, we decided last minute to head up north to Greer where my parents live in the summer. It is a 4 hour drive and another world away from the Phoenix area. It never got much over 80 degrees for the high and we all needed sweaters in the evening. We left our house at 2pm and it was 115 degrees, we got to Greer that evening and it was in the 60’s. Awesome!
We had a great weekend, great 4th and really enjoyed our time there. It was small town living with banana split eating contest, tiny boat races and fire works. Perfect time for the kids to play and enjoy the outdoors! I couldn’t complain one bit. And all the kids slept great there.
We got home and had to start packing for our trip to South Dakota. We were originally just going Thursday to Sunday and those were packed full days. We had a great time; the kids just loved their cousins and man were they fun to watch. It makes me sad how far apart we all are especially since the kids are all so close in age, but at least when we do see them we make up for lost time. We have to give props to the beautiful Cortney, Andrew’s cousin by blood, my cousin by love :), who watched our kids 2 nights in a row. Friday night we got to spend the evening with Andrew’s oldest brother Josh and his wife Carrie and we had such a nice time. We all get along so well and I am so thankful I married into such an awesome family. The next night we weren’t quite sure what to do Andrew had his reunion and we needed someone to watch the kids at the hotel so we called up Cortney and she was sweet enough to do it again. The high school reunion was at a bar and we didn’t really want to hear people say “you have a baby….in a bar”. We had a great night and capped the evening with a crazy thunder storm that I thought would have killed us, but I am a little dramatic and Andrew drives well.
Sunday Josh and Carrie threw a BBQ for us and invited family, so we didn’t have to go house to house. It was awesome. Good food, lots of family came that we haven’t seen in years, the kids played and hard. Then we got in our jammies and headed to the airport for our 9:15pm flight. When we got there they said our flight wasn’t leaving until 1:45am. I didn’t know what to say or do. 3 kids in the airport from 8pm – 1:30am? Where will they sleep? Will they sleep? When will we get home? Andrew gets on the phone and gets no where. We go up and wait for our plane. Andrew gets on the phone again; he is trying to book another flight. I tell him Lily doesn’t have enough meds to get us through to Tuesday night don’t book it if it is a night flight. He books it. He gets all fees waved and tells me he wants us to take that flight. I say no. We have waited this long let’s just stick it through. So we wait. Finally 1am boarding time. We hand them our boarding pass and they say you aren’t on this flight, you are on Tuesday nights flight. We explain our story. Back and forth, back and forth. They load the plane. We talk on the phone to someone, the guy at the gate check is trying to get us on this plane, but final word is as the full plane is waiting for us, no. By now it is almost 2am. I am crying. Andi is crying. Andrew is asking me if I am mad at him. Oliver is wide awake as well as Lily. I tell the guy we have no car, no car seats, no where to go. He was very sweet and felt really bad. They got us booked at a nearby hotel, they got us a shuttle and let us borrow car seats. We get into our room around 3:30am and I can’t get Ollie to go back to sleep. It is past 4am when finally I just lay him in bed with me while Andrew and Andi are in another bed and poor Lily is on the floor. Lily can’t sleep in a bed without rails. We all pass out and hard, until 7:30am when Lily decides it is wake up time and screams happy screams and yells and grrrrrss from the back of her throat. Sigh. Needless to say we were zombies most of that day. But I decided to change my attitude and we made the best out of it. I had packed enough meds for an extra day just in case so I just had to ration them a little to make them last the extra extra day. We went back to Josh and Carrie’s home the next night and boy were the kids happy it turned out that way! The girls got dressed up in dance gear and put on a dance show for us to some Taylor Swift and even the boys got in on it. We laughed and had a blast. Our last day we stayed home with our nephew and niece and Andi said that ended up being her favorite day. She liked that they built forts.
Our flight Tuesday was on time, they checked our bags for free and the flight was uneventful. Well except for the kid hating jerk that I had to sit by with Andi and Ollie. But I figured God put him next to us for his sake, not for ours. You a funny guy God.
So we are back, trying to get caught up on lost sleep. And I am trying to cope with the reality that we only have one week left of summer vacation. As happy as I will be to be able to run errands and whatever else I do while the girls are gone, maybe look for a job? I have really enjoyed this summer. And the thought of Andi at school all day still seems so foreign to me. Even when I worked she was only at day care about 5 hours max and only 3 days a week. Last year pre k was every day but only 3 hours a day. This is going to be weird.
I really need to find a job, but man how? I need something uber flexible with all Lily’s appointments and our crazy year round school schedule. Can’t I just get paid to blog and facebook? Anyone know how to be a freelance writer?
Anyway, things for the fundraiser are going awesome and I am getting so excited! I am overwhelmed with the generosity of people and can’t believe I was able to not only get amazing raffle prizes, but I got dinner catered for free! Can you believe it? My mom said I was scrappy. Can that get me a job? Being scrappy? I really am not scrappy, it is all Lily. It is such a blessing to have such a loved daughter. She is such an amazing little girl who touches every life she comes into. What a proud mom I am.
August 22, 2010 LilyAnna Blu’s Splash for a Cure! I will post the flyer in a few days.

Thursday, July 1, 2010

CDKL5 and Us

video

There's no place like home

So here I sit on Lily’s hospital bed while she sits in her wheelchair. We like to switch it up, you know keeping it exciting. It is 8:30am and we are on hour 48. I’ve enjoyed about 4 rounds of Family Feud, 8 rounds of Solitaire, 4 rounds of Scrabble, kept up with status updates and watched Food Inc (we need a bigger garden) all on my itouch. Lily has enjoyed Princess and the Frog about 2 times and lots of PBS. Lily has had some staring spells that I wanted to be evaluated. She has had clusters of jerks. She has had some weird things I have never seen before and she had some silly laughing spells. All these incidents I hit the “mark” button and had the Dr. (we actually had Lily’s neuro on call Tuesday and Wednesday so that was nice, now it is July and a new guy is on call) look at each episode in question. Some results are, staring spells are indeed seizures. Clusters are seizures, weird things not seizures, laughing not. I was overjoyed that she was laughing because she thought something was funny, unfortunately something she thought was funny was most likely a quick seizure before, but the true belly laugh was all her. I have been discouraged by being able to watch her EEG the entire time we are here. She seizes all the time. Just twitch her and there, sometimes big, some small. But her brain is just wildly out of control. Her neuro said her EEG is pretty much a perfect fit for LGS (lennox-gastaut syndrome).
CLICK HERE FOR LGS INFO
This is not a new diagnosis, but her EEG was never exactly to the diagnosis and now it is. This is not uncommon for children with CDKL5 to have LGS, it is just well… it just sucks. It makes things more complicated and to ever pray, wish, hope for seizure control is pretty much out of the question. She could go through periods of no seizures but it is all par for the course with LGS. I guess the only thing we need to do is prevent her having a big seizure that will end her up in the hospital (status epilepticus). Sigh.
On call neuro just came in and actually gave some good news. He said Lily has some periods of nice normal EEG pattern. He agreed with the LGS diagnosis and said it was because of the CDKL5 not the other way around, which I already knew. He was very nice and maybe handsome as well…but that is neither here nor there. Andrew thought so too so it’s all good. Our neuro upped Vigabitrine (Sabril) and Clobzam quite a bit yesterday and the other neuro said the past 24 hours have been very decent on EEG, so as much as I hate to have Lily max out on a dose I guess it is for the best and I have proof that it is indeed helping so that makes me feel better.
I have to stay hospitals have really upped the customer service these past few years. We have been frequent flyers in hospitals for almost 8 years now, we have had a little break from bringing Lily in, it had been 3 years, but my goodness it has changed in 3 years and changed so much in the past 8! The nurse staff has been wonderful. The food, decent, get this, I get a tray along with Lily and I call and order what we want when we want it. Like room service. There has been a therapy dog come visit, some organization bring gifts to kids in the hospital. Child Life has evolved vastly in the past 8 years… wow! I really can’t complain, having a lap top with wifi has saved my sanity and honestly Lily and I rarely get this kind of togetherness with just us, so other than sharing a bed with her, it has been a pretty decent experience, all things considered. But I did come up with a little joke for my dear eldest daughter, what is worse than sharing a room with Lily at night? Sharing a bed with her. Lily SUCKS at sleeping. Holy cow! I cannot wait to sleep in my own bed tonight! She was up up at 4am yesterday and she was so up I had to get out of the bed because I could no longer handle her elbows, knees and feet in my face, the child is wild. Today she woke up at 4am but did go back to sleep a bit off and on until 6am and then we were up up. But I will take 6am over 4am any day.
So we are just waiting to have the tech remove the crap from her head which I am not looking forward to then we are out of here. I will get home and Grandma Cheryl will have to leave, that is a bummer, but so grateful she was here to watch the other two, whom I miss tremendously! Oh I cannot wait to get home!
I am sure I won’t be on before the upcoming holiday weekend, so enjoy yourself all you Americans and enjoy the land of the free!
South Dakota peeps! One week!
Oh and one more little tiny thing… I am doing a fundraiser for IFCR! LilyAnna Blu’s Splash for a Cure August 22, 2010. Plan on being there, more details to follow! Oh man I have a pit in my stomach mentioning this! I have so much to do in little time. I can’t wait, but I may turn into Satin until then. Locals plan on being there! Non locals, plan on donating :) More info to come!

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