Friday, October 29, 2010

Kisses, Comfort... VOTE

This morning I brought Ollie into Lily's room while I was dressing her for school and he wanted on her bed, so I picked him up and put him on her bed next to her and he puckered his lips and made the muuuuu sound and pulled Lily's hand out of her mouth and laid a big fat kiss on her lips! Then when Andi and I asked for one he refused. Only kisses for Lily! So sweet!
Then this very same morning I ran to my bedroom for a hair brush and walk back to the dining room and see Andi rubbing Lily's arm and asking if she was ok. I said what is wrong and Andi says, "she had a seizure". Bless both their hearts. I thanked Andi for comforting her sister, but also said, sweetie please also call for me if I am not in her room. My kids are the sweetest.
Because Lily's seizures are so bad right now Andrew hooked up a camera in her room, we've always had one but it wasn't night vision. We always had to have a light on in there if we wanted to see her so he hooked it up and it wires to our tv in our bedroom. I feel so much better now turning it on the the Lily channel after our shows. She's in picture in picture when we are catching up on TIVO. :)

~~~~~~~~~~~~~~~ALSO~~~~~~~~~~~~~~~~~~~~~
We just have 3 days left and we have to be in the top 10 in order to win the $50k from Pepsi. Please vote on the gadget to the right and also text (free) 102973 to 73774!

Thursday, October 28, 2010

Weekend Update

I got home Tuesday night at 5:45pm and I was beat! It was just Andrew greeting me, Ollie was at my mom’s, Lily and Andi were with Ms. Sharon at home and I was so happy to see them all! 5 days was a long time to be away, but what a great get away it was.
I got in around 2pm on Friday and we just laid low. I got to see Langan again and finally meet Franny. Oh my heavens, two of the sweetest girls ever! I honestly think a piece of my heart stayed in Nashville. Langan impressed me so much with her walking, stair climbing, self feeding skills and she gave me some of the best hugs! I loved it when I stood by her and she would grab my hand and hold it. Melted my heart. Little Franny has the bluest eyes and the biggest smile that makes her nose crinkle. She and I took to each other pretty quickly and I really am going to miss those girls. Friday night I got to watch Langan’s ABA therapy (is that right?) then we got Pei Wei, the girls went to sleep and Wendy and I watched a documentary she was in regarding a very sad case she had a few years back. Not bad watching your host on TV that isn’t shot from a cell phone posted on youtube from a drunken wedding. Then we crashed.
Saturday was a busy day! I stood and smiled at a booth at a down syndrome walk. Wendy was asked to hand out information on a class she teaches (in her free time…ha!) teaching rights to parents of special needs children ie how to survive IEP’s and get what your child needs. Then we had lunch at the famous Rotiers and had a yummy cheeseburger. Then back to the home to chill before a night of honkey tonking. Yup that is what it is called and boy did we honkey tonk! We started with dinner then moved on to “lower broad” (?) and had a honky tonking good time. Well from what I remember ;) Let’s say it will be a loooong time before I drink another beer. But it sure was fun to let loose! Dance and sing along with all the country music I grew up on. Who doesn’t love a little fishin in the dark?
Sunday was a bit rough for me after a honky tonking night; we got up and tailgated the Titans/Eagles game. I stuck with coke. Then the game, which was great! So much fun and a win for the Titans. It was fun to be a part of such an exciting game. I tell you what Wendy is a man’s dream with her stat remembering, rule knowing, football loving heart! Andrew would die if I cared a quarter about the Cards than her and her Titans! Wendy is one cool chick!
Sunday night I got to enjoy some of Jon’s homemade pizza and it was fabulous! But also witnessed sweet Langan have a pretty nasty seizure and it was hard being on the other side of it. I guess I got to feel what it feels like for our friends and family to watch Lily seize. It isn’t the same and made me sad. Langan is so sweet and works so hard to do the things she does and stupid seizures just knock her down. It was heart wrenching to watch her seize and Wendy just comfort her while it happened. I guess it was like watching my life unfold in front of me and I just hate that anyone has to go thru this. It really seems so unfair. I know there is a reason, but sometimes I still think it totally sucks. Well I always think it totally sucks.
Monday came upon us fast and we took Langan to school and I am so glad I got to meet her teachers and see her awesome school! Made me wish Lily and Andi went there too! Then we had some time to kill and Wendy took me to the court house to where I got to meet some of Nashville’s most honorable Judges, watch a murder trial and get asked if I was one of Wendy’s clients. That meant they thought I was coming from jail. I asked him if he thought I looked like one of her clients after she said no and he chuckled and said no. Sheesh I thought I looked cute that day, not criminal. Then we had lunch with one of Wendy’s friend who is an incredible woman, and also a special needs mom who inspired me. We all chatted for hours! The day ended with a meeting with the Mayor of Nashville who happens to be a friend of Wendy. He was so nice and we sat in his office and just hung out. I tell you what that Wendy can give one hell of a tour of Nashville! Only thing I wish I saw was Keith Urban and Nicole Kidman.
Monday night I borrowed Wendy’s car and met up with Andrew’s cousin Ashley who moved down there from South Dakota to go to Belmont and loves it so much she stayed there. She took me to a nice shopping area and to dinner. While out shopping I saw a guy on a phone with a distinct voice and said, “That’s my pastor from my church in AZ!” Ashley couldn’t believe it! I couldn’t believe it! I stopped him and introduced myself, it’s a big church, he said he knew me and that I was the first person from The Grove he has seen on his tour. It was hilarious to me to run into my pastor of all people in Nashville,TN! I was just glad I didn’t run into him on Saturday night down on lower broad.
Tuesday I had to kiss those beautiful girls goodbye and hug my Wendy good bye. And it seemed to have taken all day but then I was home to my family.
The house was a disaster, the kids needed their teeth brushed, but they were healthy and happy and they missed their mama, probably not as much as I missed them, but did I ever miss them. And life has been insanely hectic since I got back. I have to work Friday, Saturday and Sunday morning before taking the kids trick or treating. Then looking at my schedule for next week Dr apts, commitments, life. I’m thinking it will slow down hummm I’m thinking after Oliver is shipped off to college.

Wednesday, October 27, 2010

I'm baaaack

Dear friends,

If anything ever happens to me, please take turns cleaning my floors until Andrew finds either a new wife or a live in house cleaner. For my children's sake, please.

Love,
Kim who will be cleaning floors for days.

Thursday, October 21, 2010

The Powers of The Net

I wanted to share a post from a fabulous CDKL5 mom who lives in Australia and had a beautiful son with CDKL5 and has twin daughters with CDKL5. Because of her family the gene was identified and now kids are able to be diagnosed all across the world. They are the pioneers in CDKL5 and could't be a sweeter family on the earth. I so long to meet them in person one day. Asha and Lily look very similar and I would love to have the girls meet one day as well. Anyway I got this post on our CDKL5 yahoo group and I just had to share this lovely story about how small things can make a difference. Such as a video that took me about a day to make united two families on the other side of the world. I will second Leita on isn't the internet great and throw some props to God too. With him all things are possible. All things work together for his good. Hope you enjoy this as much as I did.

**Hi Kim,
I saw the beautiful video you've put on YouTube and want to tell you a lovely story about how it let me meet another little girl with CDKL5.
Her name is Bianca and her mum left a comment for you saying they lived in Australia. There are only 7 children diagnosed in Australia and I had never heard of her so I sent her mum a message.
Her mum emailed back with her phone number and we had a long chat the following day saying we'd like to meet one day. They live in Sydney too but about an hour away.
I told her I was going to the Children's Hospital this week to collect some t shirts.
Yesterday I recieved an email to say the hospital called offering Bianca an appointment because of a cancellation today and could we meet for coffee.
I had no idea what she or Bianca looked like so wandered around the hospital until I saw the unmistakable leg crossed, hand in mouth,sideways glance of an exceptionally beautiful little girl who looks SO much like your Lily and my Asha!!

Isn't the internet great?


Leita**

And please keep voting for CDKL5 on the Pepsi Refresh Challange, we are in the top 10and we will get the $50k if we stay there come Oct 31st at 11:59pm! Vote online with the widget on the top right of this here blog AND you can text daily 102973 to 73774.

I'll talk to you after I am refreshed from Nashville! :)

Monday, October 18, 2010

A Bottle Will Do Her...

Fall break is 2 and a half weeks long. 2 and a half long weeks.
We spent Wednesday of last week to Saturday in Greer and it was beautiful! My parents had the kids for a day and Andrew and I stayed at one of their rental cabins and we had a great break. We really just had Friday to ourselves, but it was much needed and so refreshing! We had to come back Saturday because Sunday Andrew and I had to work at church (watching babies) and then I had to work at the sports bar at 3pm. It was my first day having a section on my own. It got a little slammed at one point, but I walked away with about $70 in tips, not too bad for a Sunday night.
We have one day left of fall break and I will actually be spending the day in an alcohol class. No I don't have a problem, it is just for work. I will be there 10-2 and we found a very sweet new caregiver who is willing to watch all three and thank God because if I have one more day like today I will need that alcohol class for other reasons.
Sometimes people will say to me "I don't know how you do it" but they aren't always talking about Lily. They sometimes are talking about the child with energy that never ceases. The child who has no comprehension of the word no, the child who fights with her brother, the child who has no self control and at the end of the day she writes me a note apologizing for her bad behavior and hugs and kisses me and prays for self control. I love her. I love her I do. But man she can be exhausting. I seriously think I could take her to Doctor and get her prescribed something. I won't, but I would bet money she could be diagnosed with ADHD. I think I should take myself to the Doctor and get me a little prescription. Sigh.
She does well in school. She gets to socialize, play, learn, etc. We just need to get her back into it.
It was just days like today I feel like I could get in my car and drive far far away.
A trip to Walmart (yes Walmart) with a 20 mo old who refused nap today, a 5 year old who was just in a serious way of lacking self control and trying to push sweet Lily while pulling the crazy other two. I had no make up on. I was constantly squawking at Andi who deserved it and looked every bit the part at Walmart. But actually our Walmart is pretty nice, I looked like the typical Walmart shopper at a non typical Walmart. Go figure.
After getting a blow in July, another in August, AND yet another in September I am done. Cashed out. Thank God for my dear friend Wendy (and awesome mom to the famous Langan and now Franny) knew I was having a rough time and said "come on down to Nashville!" I typically would have said nah the kids, or nah no money, but something in me said go, do not pass go, do not collect $200, go! So this Friday at 6am (yes 6am) I will be on a plane flying to Nashville, TN (well first a plane to Atlanta, but you get the point). We are hitting some of Nashville's finest honkey tonks, we are going to a Titan's game (wearing my cardinals shirt, of course!) we are going to talk, laugh, drink and I get to get away.
With this new job, Lily's seizures worse than they have in years, several commitments I have, I am just worn out. Exhausted. Cashed out. Put a fork in me, I am done.
This trip is exactly what I need. I cannot wait. I have the kids all figured out. Andrew will be just fine with them. I am sure by Sunday I will be wanting to be coming home, but I won't be home until Tuesday.
Bummer....

Sunday, October 10, 2010

Love Hurts

Man, if love hurts, parenting is down right excruciatingly painful! Emotionally and physically!
Lily's seizures are back. She is sleeping again, eating just fine. Not sick. Everything is fine and she is up to two grand mals a day again. Suck it. I hate seizures and the only thing I probably hate more is the medication to stop the seizures. Back when she was little I would be on the phone with neuro a week ago, but I'm not jumping to do so because I don't want to up anymore of her meds that are already super high doses, I don't want to add a new med. Suck it all. Seizures you really need to get a life and stop bugging ours!
Because we are a blue collared construction family and our country is currently experiencing an economic crisis we are kind of screwed, so mama has her work pants on. I am waiting tables at a very cool sports bar near our home. It is actually been really fun so far. Cool customers, chill atmosphere, great owner, awesome job. Plus it is a nice way for me to get out of the house and make money while doing so. I waited tables 9 years ago but I was a little too nervous to ever be any good at it, but this place is different and maybe the fact that I deal with 3 demanding little creatures all day long so getting beer for dudes watching football is far easier. But what makes parenthood excruciatingly painful is not because I have to work on my feet now for 6 hour shifts at a time, it is because my beautiful little 5 year old daughter was playing with a heavy metal rod that she was no suposed to be playing with and she dropped it on my pinky toe. The pinky toe connected to the feet that have to be walked on for 6 hour shifts. Yes she was sorry. Yes it was an accident, but my Lord that hurt. Does hurt. Will hurt. Gonna hurt your eyes when you look at it....
See...

Tuesday, October 5, 2010

Oh What A Day...

Today started with a 9am appointment at Ortho Clinic. My mom had a Dr appointment so I had to take all 3. Luckily Lily's fabulous PT came to the appointment and 1st was an X-Ray. The appointment was a 2nd opinion about the scoliosis and bracing. I couldn't have the other two wild animals in the X-Ray room so luckily PT was able to hang out with them while I held Lily. In the room the kids were wild. Dr. came in, shook my hand, was very kind and had a great bedside manner. Asked what he could do for us and I told him. He looked at her film said she did have a 36 degree curve, but also said it was flexible and it could change degrees by the way she was sitting. He said she didn't need a 24 hour brace and even if he rx a 16 hour brace I probably wouldn't do it so he said she is doing ok and we can wait another 6 months. He was not being rude when he said that I wouldn't follow orders, he understood this is a quality of life issue and I told him if it were necessary to her health of course I would but at this point it isn't necessary and we just have to keep up with horse therapy, her other therapies and she has to be positioned properly in her seating systems, which are all things we are doing. He said surgery will probably be an issue one day, but not in the near future. He also said if PT emails him info on the TAOS Orthotic system the state keeps denying us on he will order it. I think if he does we may actually get it. Fingers crossed.
After that we had 2 hours to kill before Lily's eye appointment so we got some drive thru and went to the park. The kids had a blast, it was a beautiful day before the rain came down. After putting hand sanitizer on our bums after a gross toilet situation, we headed to the eye doctor. The storm was in full effect when I unloaded the kids out of the van. That wheelchair lift couldn't be slower when the rain is coming down sideways (said ala Forest Gump).
The eye doctor was as good looking as always, and after they dilated her eyes said her nerves look great (Vigabitrine can cause nerve loss and peripheral vision loss so in order to stay on that med she has to be seen every 3 months). So it was 2 pm when we finally left and I treated the kids to some Sonic ice cream for hanging in there with me all day and (by the way the girls are on fall break for 2.5 weeks, that is why I had everyone) then we drove home in a freak of a rain storm.
Lily's caregiver Sharon met us at the house and watched Lily and Andi while Ollie and I had to run to the grocery store. Finally we get home, I walk through the back yard to check out how wet the garden got and I see our patio glass table shattered. Totally shattered.
Sigh. Gone from 8am to 4pm with 3 kids. Home to a shattered table. I'm beat.
But thank God no brace!!!!

Monday, October 4, 2010

VOTE!

Please vote daily for IFCR in the Pepsi Refresh Project! You can vote easily from my blog or from http://CDKL5.com and also text daily 102973 to 73774.
Lily has seizures every single day of her life. Every single day. Lily can't say one word. She can't feed herself. CDKL5 stole everything from her and we just want to give it the fight of it's life.
So folks get out there and vote!!!!

Friday, October 1, 2010

Answered Prayers!

Just wanted a happy post and let everyone know the grand mals are not back! They were here that day Lily decided sleeping wasn't for her and left when she finally started to sleep peacefully again. We have keep this as a top prayer for us and it appears to have been answered. All us moms know how important sleep is and just how bad it is when we don't have it. It makes total sense for Lily who has a low threshold anyway to go into overdrive when her system is off.
So yay! She has only been having her usuals for the past 2 days. Fingers crossed.
Today is Friday before fall break. Our kids have modified year round school schedule, they are on 9 weeks, off 2 and so on. Here we are at 2 off. 2 weeks and 2 days. We may spend a week in Greer, but we really haven't planned that far in advance yet. Who does that?! :)
I'll keep you posted.

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