Tuesday, June 25, 2013

June is CDKL5 Awareness Month!

Lily suffers from CDKL5 disorder. No new news to all our friends and family, but it is June and this was our first time acknowledging June as CDKL5 Awareness month.
CDKL5 disorder sucks. Really really sucks. Takes away everything you every thought of your child's future. It takes hopes and dreams and reconstructs them into something you would have never imagined being a dream. Hope for no seizures? Pray for her to talk? Beg for her to feed herself? I thought I would be begging God that she made the right choices, chose the right friends, met the right man. But no it is please let her have a day with out a seizure. Help her communicate with us without the words to do so.
It sucks. I don't dwell on the suckiness of it because it gets us no where. I focus on how she taught us to love. How she taught us to trust God. I focus on who she made us all become. I thank God for this disorder that changed us all. BUT I also wish it didn't have to be so hard for her. I pray that we find a cure and that is why I am on the IFCR board. It is why I fund raise. It is why I do everything I do. I want to make a difference for future generations. I don't want others to have to face this beast. I know science is vastly progressing and I know a cure is in reach. So I talk about it. I post about it and I ask people to attend our events. I will do this until I can't or a cure has been met.
I will ask you all to "like" us on  FACEBOOK
I will ask you locals to come to our event on July 10th at Adora Trails Community Center 5:30-8pm


I will always fight for Lily. I will always fight for her friends. Almost daily I log on to see how her friends are doing on our support group and it seems like someone (often more than one) is in the hospital. Someone is suffering from seizures, tummy issues, breathing issues, etc etc. We have lost many precious kids to this beast and I simply can't sit around watching it all happen. We will always promote awareness and we will always do what we can to find a cure.

Help us fight! CDKL5.com

Wednesday, June 19, 2013

Make A Wish!

Lily was granted a Make A Wish some time last year. I can't tell you what we had for dinner last night so don't judge. I recently thought it was still April, but then realized the sweat dripping off of strange parts of me which zoned me in on the fact that it is certainly June. So yes Lily got a Make A Wish. Lily got a Make A Wish because her Doctors actually believe she fits the criteria for a MAW. Do we? No, not really. Doctors are proven wrong all the time, right? But the truth is she has doctors who aren't so sure of our precious girls future. So Lily got a Make a Wish. Pretty big of a deal. They came out and we talked and since Lily isn't verbal we had to tell them the things Lily liked. I know families out there use Make A Wish for practical things, like equipment and such, but have you met us? Practical is not really anywhere in our names. The truth is our family had not been on a vacation in over 6 years! We would travel to visit family, which we love, but that was our vacation. No beaches, no mai tai's..... So we said Lily loves warm water, she loves resting in the shade, she loves to swim, she loves dolphins (because she picks the dolphin with her nose every time shown vocal zoo on the Ipad, that was for those of you who were going to ask how do we know she likes dolphins) and we knew if we were to go on vacation we knew it would have to be an all inclusive place, no car needed for travel. We also requested no flying but when they called and said hey would you guys like to go on a Disney Cruise, yes! But you will have to fly, ugh... but still YES! Then get everyone's passports they said. And we did.


Please tell me you love Oliver's face as much as I do!



It seemed like this trip was planned so long ago that it was never a reality. But then before we knew it here we were, the week before our Disney Cruise! YIKES!
The old Kim came out with vengeance. I had nothing to pack. And that is true, my last suit I bought was the one I got when pregnant with Oliver and we went to a friends wedding in Mexico.. ps we really need some more friends to get married in Mexico, that was fun... but anyway, I needed a suit. Or two. Plus cover ups, I read everything I could on Disney Cruise wear, from blogs to pintrest and all I kept seeing was Pirate clothes. Heck no. I have 5 people to pack for in as small of luggage as possible. No room for swords, matey. But Oliver did get his little outfit sneaked in. How could I not? Every little boy has a little Captain Jack Sparrow in him. But to say I went a little panicky would be an understatement. I bought more than we needed. Stressed way more than I needed. I worried about Lily, how will she be on the plane, what car seat do we use, what chair do we bring, do we bring her back brace? What if she has a seizure out at sea and not a hospital in site. Doctor prescribed enough emergency meds to keep the whole ship singing, but I still worried. And prayed. And asked everyone else to pray. Give us peace on this trip. I was telling my friend about the what to wear drama I was self inflicting and she said “I'm sure you'll have fun no matter what you wear” and I was like.. yea. Then I had another talk with another friend and she said don't stress over packing for everyone, pack for Lily, get everything you need for her and for the rest of you if you forget anything you can always buy it there. And I was like... yea. I had friends praying for a peaceful trip. I had friends praying for my sanity. We are lucky like that to have praying friends. It helps so much knowing that. But all that stress still overcame me up til Saturday June 1st. On that day it was ready or not... here we go.


I learned a chain was the best way to not have to answer no each day when he asked if today was the day


Off we Go!



We got picked up in style and headed to the airport and walked into a chaotic adventure of a million folks just wanting to get away …. Southwest. We were like crap we'll never make it in time. But then someone saw Lily's shirt and our buttons and that changed everything. We were whisked ahead, whisked through security (opened a line just for us!) and brought to our gate, were given goody bags, announced to the whole crowd and put on the plane first. Wow. Southwest and Make A Wish work together and holy crap did they ever. I asked Andrew, is this how celebrities who have to fly commercial get treated?


And we were off to.... New Orleans? We had to land and then take off again. Not awesome. Lily does do rather poorly on airplanes and this was no different. She had a few seizures on the flights and up and down, up and down is not awesome for her. We ended up using an old seat of hers that is a tumble form, but also a car seat and FAA approved and bought a fold up chair that is one size up from ours off craigslist. We used the entire trip, the seat in the chair, it looked a little hokey, but it worked. We finally got in Orlando and stayed in the hotel there (in the airport) that night. Not much to report, we had dinner, Lily had seizures, I thought this was the worst idea of our life, Oliver and Andi fought and had to be separated 80 times and then we went to bed. Oh and I realized I counted wrong on one of Lily's meds. I have no idea why I thought she needed 3 packets a day when she really needed 5. Yeah big difference when being gone 5 days. The one person I committed to packing right for.... yup that’s me. The good thing is I did pack for a few extra days just in case and counted that if we got home when we were supposed to she will only have one half of a packet too little. Totally survivable. If we got home when supposed to of course (and we did, this wasn't a set up for a story later) :)


Woke up, ate and got on the Disney Magical Express!


All loaded up the coolest, biggest bus!



Started to get jazzed! Lily had no seizures yet that morning and the day was off to a good start!
Got to Port Canaveral around 11:30am and on the boat about 12:15pm. In line Andi found a friend in a little 4 year old girl with down syndrome. She was the cutest little doll face ever and Andi just gravitated towards her and the attraction seemed to go both ways. So much the little girl wanted to hug Andi every time we saw them later on the boat. My Andi...





We were too early to get in our stateroom but started to check the place out. Went to guest services to get some stuff squared away (Make A Wish gave us a debit card for food and souvenirs and they gave us a credit to pay for our excursion, but we (obviously) had to give a card so we could you know... mai tai's? Then went to the Cabanas and had some amazing buffet! Like what the heck, this is all included? It was like Vegas, minus the strippers and add Mickey Mouse! Then the kids swam while waiting for our room and there Andi met another friend straight off the bat, this sweet little southern gal, Olivia, spotted Andi who was standing by Lily and told her she had something in common, that she had an older sister with down syndrome and then they were talking and playing. Olivia, I am pretty sure, thought Andi was older than her almost 5' tall frame 8 year old body pretends to be because she was 14 and as sweet as she was she was probably looking for a friend who could hang out beyond the Ocearner club level. But Olivia plays a big part in our story. We'll get back to her later.


Finally we get to our stateroom! Holy smokes! It is huge! Everyone says on cruise rooms are so small, but thanks to Disney and Make A Wish, not for us! We have a welcome fruit and cheese basket/tray and a welcome packet about our weekend.






We saw we had the early dinner package and would have dinner at 5:45pm each night and would rotate restaurants. First night we arrived at our table to see this





And we met Paulo and Micrea. Our best buds of the week! I know these guys are professional and work for tips, but I swear these guys ended up feeling like family. We wanted to sneak them in our suitcase. They were AMAZING! The kids were almost in tears on our final good bye with them.


Andi is so sad her water camera took horrible pictures out of the water and her pictures with those guys didn't show up


Then after dinner we put the kids (all three) in the Oceaneer Club for an hour or so and Andrew and I walked the boat, got a drink and checked the place out. We went to the spa to schedule a massage that we never got because we were so busy and where Andrew saw they had a sauna club you could pay a fee and the whole time there you had full use of this amazing place with a sauna, special showers that had aromas and names... I really don't know what they were or what they did, some where called rainforest …. Andrew really wanted us to both get a pass, but I am well... cheap.. AND I knew we had so much planned I might as well have thrown money overboard, but I encouraged him to get one and he did. Then back to get the kids and those crazies still wanna do stuff! Andrew asks if I mind him going to his new found favorite place, the sauna, and I say sure! We are gonna go karoke! Andi's choice of course! Disney has night club type atmosphere's for families, it is so cool! They of course have adult only places as well, but it was fun taking the kids to the karoki place. The room only had a handful of people and the kids were begging to sing so since Oliver can't read yet we decided on Happy Birthday. The DJ said his birthday was coming up so they decided to dedicate it to him. It was hilarious. They have no fear and the whole crowd was cheering. Silly kids. Lily and I enjoyed watching them. Andi says “mom you love to sing!” and I said “only around people who love me unconditionally”. Later we met up with dad while watching Wreck it Ralph, Andrew took Lily and Andi to the arrrrrrr-cade while Oliver and I stayed in the movie until I told him I cannot sit here any longer. I needed toothpicks for my eyes! We are an early to bed, early to rise family and even though we were 3 hours later than our time, I was done. It was almost midnight and we had to be up early for our Bahamas excursion! Oliver said ok and we went back to our room that transformed from one bed and a couch to 4 beds (and the next night our sweet hostess customized the sheets for the kids) and we hunkered down for a few hours.
Oh Lily went that whole day with no seizures!


The Redstripe was dads... 



Bahamas Day! We had to get up, eat, and get to the D-Lounge by 9:30am. The room was full of people and we all lined up and filed out. We got to take a different route since we had a wheelchair and walked with another Make A Wish family. Andrew and the dad soon became buddies! We were at the end of the line and there were some issues that put us way behind the rest of the group. I think we probably got to the Atlantis Resort at least 30 minutes behind everyone. We did of course meet some incredible people at the end of the line. There was another family who was late and they ended up becoming friends as well. At the Atlantis resort we lost our group and had no idea where we were going. We walked all over the place, we were sweaty, hot and grumpy. It took forever to find the dolphin cay exhibit that we needed to square away our family times with that seemed to get screwed up being at the end of the line. But we got it figured out, had a few hours and went to eat and play. After eating we saw what looked like a Lazy River that went around the resort. We LOVE lazy rivers! It is the best activity to do with Lily. So it was a no brainer to grab some tubes and go. We went around and it was nice. There were some waves that pushed us and we laughed and loved it. Then there was a place you can keep going in the lazy river OR go that way. No sign says what that way was going, but there was no height requirement, there were no life vest requirements so we had no reason to think this was anything but another route for the lazy river. I am sharing a double tube with Lily. She was slipping thru the whole so I had her more on my lap than in her side of the tube, but that made us very top heavy, back heavy? Whatever you call it we were unbalanced. Then comes the conveyor belt. What is this all about I ask the lifeguard. You're about to go down the rapids. Ooookkkkk????? He didn't seem concerned with the way our tube was why should I? I figured it would be like those other waves that hit which were fun and made you go faster... um no. Rapids. Like real rapids. We made it through the first round, barely and laughed because you always laugh when you don't die but thought you would. But then came the second round and I can't even tell you exactly what happened, all I know is we flipped. Lily.. my Lily who sinks, I held her up, I kept her up, Andrew hung on to our tube, he had Oliver and couldn't do anything, I kept her up but as I did that my legs, feet, elbow were all being drug across the concrete floor. What seemed like hours probably only lasted 60 seconds and then we were in calm. I was shaking, hand Lily to Andrew and stand up and access the damage that I had no idea I had until it became calm. And then my body was screaming. I had skinned everything to a point it was pure white. Then the blood came. The worst part was our stuff was all the way on the other side of the resort. IE Lily's wheelchair! We had to get back on our tubes and endure the rapids again. We switched kids, but then I had to hold on to Oliver for his life during another scary part. {sigh} We finally get to our stuff and we sit down. I know I need to get something on these wounds, but had no idea where.
I tell Andrew to take Andi on some of those amazing rides and I would take Lily and Oliver to the kids place area and I will take a rest, we planned on meeting at the dolphin cay exhibit in an hour.





While walking to the kid area I look for the first aide area, but it was really far away and we only had a small amount of time to play so I decided to let Oli play and have Lily and I just chill. PS Lily never even coughed or had a scrape. She was completely fine. Never cried, nothing. She thought I was a fun raft to ride, I think. So my job was done.
Oliver is playing. Lily and I are resting.




After seeing a few people look grossed out by my legs I decided to put a towel over them. Oliver comes running up to me and I said “ok buddy, it is almost time to go, go down the slide one more time and come back to me”. Oliver is very good at listening to rules so that was the expected outcome for me. At that time he runs off, a lifeguard finds me and says “I saw your legs, can I help you?” “Yes please” and he runs off to get a kit. He was already getting the kit to help a dad with a gash in his face from what you ask.. oh yeah the rapids. He comes back and I am staring to look for Oliver, he should have been back by now, the guy cleans it up with peroxide. Let's just say I got a little lost in the fact my legs were burning off. When back to reality I say, I don't see my son. The head gash guy asks what he is wearing and starts looking for him for me. Then I tell the life guard, I don't see him. I go running from one side of the kid area to the other and he is not there. I pray God, please, find him, please God. My heart is beating like it will pop out of my chest. My heart hurts. God please. God please, where is he?! I tell another lifeguard. She makes a funny face and asks what he is wearing. No walkie talkie though so talking to her made no difference. Please God, please God! Then from the corner of my eye I see him walking hand in hand with a manager and a young girl. I go running and meet up with them. If I didn't see them I have no idea when I would have found him! I get him and grab him. He starts crying and said he couldn't find me. The manager said we were lucky he was found by … our little friend Olivia! She saw him wandering, recognized him and took him to come find me. Ahhhhh. Oh Lord, you work in miraculous ways. She said in her darling southern drawl “can I hug him?” because he was just crying and crying. My sweet sensitive buddy. And my heart. Two of life's scariest moments back to back. I am positive several years got taken off my life that day. Might as well start smoking now. This ticker won't be going much longer. Then I see Andrew who says “what the heck? We need to be at the exhibit to pet the dolphin” I say “you have no idea” I try to explain as we run our butts off in the Bahamas heat to get to dolphin cay. They let us in late. There was a woman there who treated us like royalty again and we got on our wetsuits, listened to some rules and went to meet Kelly the dolphin.







I had figured by this moment the only way our day would be complete would be if we had to fight the dolphin off Andi, but it didn’t happen. Kelly the dolphin didn’t want to eat any of us. She let us hug her, kiss her and play with her. It was the most incredible moment of our lives. Lily was sound asleep until we put her in the water. It was a little cool, but nothing too bad. She was obviously awake in the water, but got also very excited! Kelly came near her and we think Kelly knew Lily was a pretty special girl! When it was our families turn we all went together at first to see Kelly. We all got to pet her and talk to her. Then we went individually. I went first (not by choice) and first hugged Kelly. I had my hand right on her heart and it was the most incredible thing! She felt so smooth and she was so gentle. I then got to kiss her! Right on the lips! Then it was Andi’s turn and then Oliver’s then finally Lily and Daddy! They spent extra time with her. Lily was kicking and happy screaming! She was loving every minute and Kelly loved her. It was such a precious moment. It totally solidified we made the right wish choice for Lily. Lily never had one seizure that day. Not before the dolphin, not after. I had asked everyone to pray for that day to be a perfect day and it was. I know we almost died, and lost Oliver, but none of that mattered. We survived, he was found and we got to be in the water with a dolphin! Regardless of the fact the salt water burned my owies like nothing else... it was still the best day! We then bought our pictures with Make a Wish money. We were allotted so much for souvenirs and what better souvenir than photos of the best day ever!? Then hopped a shuttle and got back on the boat. A little time to clean up and off to dinner again, with our favorite buddies.





Tuesday was Castaway Cay day. We were given an allowance for excursions and we spent it all on the day in Atlantis and decided to make Castaway Cay day a lazy beach day. Yet Make a Wish surprised us again with all day rentals of snorkeling equipment, rafts and bikes if we wanted. It was exactly what we wanted. A lazy day. Castaway Cay was really cool! Lots of characters there, lots of cool scenery. Lots of places to park your butts and relax.


Andrew took the kids snorkeling while Lily and I sat and watched the shore. She sat in my lap, our feet in the sand and there we sat. I can honestly say that was my ultimate most favorite  moment of the entire trip. A lot of thoughts went through my mind during that peaceful moment and my tears came hard and fast. Thank God for sunglasses and beach towels. The moment was really important to me and while I’d rather not elaborate on it all, what I will say was the moment is something that will last in my memory forever.




Then we ate lunch. Which was amazing! All included with the trip. And our buddy Paulo was there too! And so much ice cream! Anywhere! Anytime! Ice cream!





We went to walk around and check the place out after lunch. It was hot and really humid. It looked like it would rain and one point we had a few drops. Oliver says “what is that wet stuff that just dropped on my head” Spoken like a true Arizona child. But it never really rained. But it was hot and humid. And Lily had a seizure. Then while I was getting braids. Yes... when in Rome, or rather.. when in the islands.. The she had another. It was too hot for her and Andrew said he would take her back to the room. They left and napped for a few hours! I took the kids to a water slide that dropped you right into the ocean! Then we snorkeled some more and then we had to get back to the boat for a special Make a Wish private meet and greet with Mickey Mouse!







We met all the other Make a Wish families and Mickey Mouse! Let me say Lily was beyond excited to see him! She was screaming and jumping her body and even Mickey motioned he was as excited as Lily was! It was another amazing moment of the trip. And another moment to say we made the right choice. This was Lily’s trip and she loved every minute! I was so thankful Andrew took her back to sleep off the seizures because she was as good as new afterwards.


Then where are we... dinner again? I am sure that is a safe assumption. Each night we had dinner at 5:45pm and rotated restaurants each night, except the last two nights we were in the same place at the same table and there of course, made new friends again at our table. This family was fun the mom and dad sat in the same positions Andrew and I were in, then we had Lily at the head of the table and the other two kids in the booth. The family next to us same thing. They were brother and sister 21 and 17 and the girl was oldest. They were just like Andi and Oliver and they kept giggling because Andi and Oliver seemed to be very similar to these two kids when they were younger. It was really funny and a fun time getting to know people from all over. After dinner which was pirate night by the way they had an amazing Jack Sparrow show and fireworks! On the boat! Fireworks! It was an awesome night!





The last day was an at sea day and we finally got to see/do all the awesome stuff on the ship we never had time to do before! We swam, rode the slide that went all the way around the boat! We laid out. Lily snoozed on a lounge chair for an hour. I took Lily in the pool and we sat for quite some time relaxing and watching Mary Poppins on the big screen. When I stood up to take her out one woman says “can I help” and then our friend from the Bahamas day was right there too! The woman got her chair for me, the kind man moved the junk from the chair to our lounge chair. It was like they were waiting for me to get up and were right there to make sure I was able to get out. Our friend from the Bahamas helped me get Lily down from the deck in her chair. It was amazing the people we met. The way they helped us. I had to joke that about 98% of them had southern accents. It made me want to move to the south. Maybe with my friend Wendy in Nashville? :) The rest of the day we went on a hunt for missing puppies all over the boat with Lily, Andi and I. That was really fun! There is a map and clues all over the ship hiding in what looks like just framed pictures. We had to use the elevator to run all over the ship. It really was an awesome time.






Side note on that elevator. Andrew found his only frustration on the vacation was the elevators. He would be standing there waiting for the elevator then when it came others would rush in and then there would be no room for him and Lily. One day he came back from the elevator so mad! I told him we’d take turns, I would take her and he could do the stairs with the kids and I had to giggle because I had one gentleman almost have his hand crushed trying to open a door for us. Another time others would move out so we could go in. They were all overly helpful and kind to us and when I told Andrew my elevator experience he said it was because I was cuter than him. It was funny. But the whole elevator thing is a pet peeve anyway. If you are able bodied, take the stairs, especially after all you eat on a cruise. Take the stairs. Elevators should only be for those who need it or have to go more than 6-8 flights. Ok I will step off the soapbox now.


I took the kids to get souvenirs that Make a Wish budgeted for us. Oliver first picks out Mickey hands, Lily gets a beautiful Minnie Mouse tunic and Andi gets a stuffed animal. All is going well while we are making our last purchase when Oliver decides he doesn’t want his mickey hands. too fricken bad I say. He starts crying. Throwing his mickey hands. Being a full on brat! I am annoyed and say you are going back to the room for a nap. He cries more. Tears and boogies all over these mickey hands when a gal named Sonja comes over to us. Asks Oliver what is wrong, he says he doesn’t want the mickey hands and she says you want to exchange them for something else? He sobs yes, hiccup, please....she says I will be right back. She comes back with a manager who talks to Oliver, takes his mickey hands, lets him pick out something else?! I was like oh man he is so lucky because he does not deserve this! The manager says wow these are all wet from your tears and Andi says.. “that’s not all that’s on them” and I say “oh andi...” dying inside and the manager says... “boogies too?” Andi says “yup” Oh good Lord get me out of here. They check us out, I grab something else just to make the transaction even since he picked pirate crap that was way cheaper. They were so kind to us. The customer service behind Disney is something I could never do justice by telling you about it. It is how they make you feel. Above and beyond. The feeling there was so magical, Andrew booked us on the cruise for next year. Ha! We will have to make payments and have til March to cancel, but we can’t imagine not going back again. The trip was magical. I know Make a Wish made this trip extra special and that couldn't be duplicated, but just being there on this magical voyage so was incredibly amazing, we simply couldn't imagine not having this experience again.


The last night we sat with our friends again at dinner. The kids were hyper and sad at the same time. They knew it was our last night with our buddies and our last night there period. Lily started up her seizures again that day and night at dinner. But we were rejoicing in the fact they never ruined our fun. She had them, napped and was ready to play again. She didn't miss out on anything and we thanked God for that. Back home she misses out on a lot. This trip I felt like we were guided by God. I know that may sound crazy, but the weather was great, yet they had a tropical depression going on in Florida. Her seizures were so much better, 2 days without seizures! That is unheard of for her! No one got sick, no one got hurt (well me, but that doesn't count). It was a trip of perfection. Like heavenly and I just know God had his hands over us the entire trip. We weren't the only Make a Wish family there and I just know all those angels on that boat deserved the trip of their life and I think they got it.





After dinner we caught a show called Believe, it was really good. At one point all the princesses showed up on stage and my sweet Oliver on my lap said “mom, Lily is a princess, we need to get her on that stage with them”. Oh my eyes welled.... I pray she is always a princess to him.


The trip was surreal. It was surreal to meet so many families that were with Make a Wish. It was too much to think about at times. My breath with hitch at times thinking about the future of all these families. The smiles on the faces of these beautiful kids. The happiness they all shared that trip. I just cannot express enough my deepest gratitude for Make a Wish and Disney and Southwest Airlines and Modji the limo driver. If you have money you need to donate, send it to IFCR (for research for Lily:)) but if you have more money to donate send it to Make a Wish! Fly Southwest! Visit Disney! These companies are making a difference and those are the people we need to be supporting!


This update took me a long time to write. There is a lot to share. A lot I am leaving out. I feel like I am leaving a lot unsaid emotionally and I think it is because it is too much to say. Too exhausting to think about. I will leave it at this..... each morning I go into Lily’s room I hold my breath until I see her breathing. I've been doing this for so long it just seems natural. I am unsure of her future, but I need to know that if one day I walk in and worst comes to worst, I need to know we gave her it all. We left her out of nothing. And this trip filled some void I think I felt I had in this area. Our life at home is therapy, doctors, seizures, worry, doubts, stress... this trip had NONE of those things... well a few seizures, but we gave her a week of love, enjoyment, water, dolphins, even a couple seizure free days. We gave her the best week of her life and by golly if we don’t have to pay for college for her, why not spend money each year giving her that week as long as we can?!


Thank you God for these blessings! These people who go above and beyond for others. Thank you for the week we had and I pray we get many many more like that one. You are better to us than we deserve.





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