Tuesday, June 29, 2010

Friday, June 25, 2010

Can a girl catch a break?

I always do this, wait too long to post then post a monstrous post that only my dear mother will read all the way through and do it again and again. Sorry. I used to post while Ollie napped and the girls were in school, but you know summer break…. Kinda like working 24/7. You moms hear me. Holla. (that is like a shout out for you older folks, I kid, I kid)
So what is up right now? Lots. Too much. I seem unable to get well. I had strep 2x, then got a UTI and then apparently a stomach virus. This stomach virus was up for much debate, it happened after a date night to the Diamondback/Yankee game. I had 2 beers then a bloody mary. A lot for me, but not the most I have ever drank (you feelin me?) and I ate a hot dog and a pretzel with cheese, my friends it was a baseball game, that is par for the course. Well we have a blast; I did a lot of heckling to the crowd since I was overly annoyed in the fact that our state has no patronage. We were stuck in a land of pinstripes and had to do my part on behalf of our home team. You know if they don’t win it’s a shame. They cheer like idiots for Alex Rodriguez and knowing this state it is only because they see him in US Weekly all the time. But I digress, we have a blast and go home make sure the kids still had food and water, just kidding again, pay the sitter and go to bed. I wake up at 3am and not feel too well and you all know what happens from there. But Andrew is insistent I am hung over. I am insistent I got food poisoning. I don’t think I have ever been that violently sick. I still take Andi to the water park the next day with my good girlfriend and her 2 daughters because I promised and I am going to be gone most of next week at the hospital with Lily. I made it through the day barely and came home and passed out. I ended up with a low grade fever and Andrew still insists I have a hangover, and then I might have just maybe wished him ill just to prove my point and guess who called to day to say he was sorry, I was right and he is one sick dog. Ahhh I feel bad, sure, but it sure does feel good to be right. I know my body, I know my limits and I haven’t thrown up from drinking since, gosh I don’t even remember. I knew I was not hung over. Sorry for such a hard lesson, but you know I do still adore and love you. And sorry to all of you for the longest story to not be important and recorded.
Anyway, my point is I’ve been not feeling myself for over a month now and I am just waiting for the day to come where I sit and say, hey I feel good. It will happen. This happened 3 years ago when I got real sick and it took a month to get right again. Let’s pray for at least another 3 years for this crap to happen.
Lily sat up that one day and it was awesome. Since then Lily has been having out of control seizures and has been unhappy and inconsolable at times. This is just the ride we are on. One step forward, 2 steps back. I don’t know why the seizures are so out of control, but I am so glad we are going to the hospital next week for monitoring. What great timing. Yesterday she had 2 large seizures and pretty much cried the entire day. But when I took her to the pool she was happy. When she sat in the shade after the pool she was happy. The minute her butt came inside she cried. It was annoying and funny at the same time. Annoying because she was acting like a whiney brat who cries when she doesn’t get her way. But funny because it proves this kid knows what she wants and doesn’t like to not get it. I wish I could video her in the pool, but she is in my arms the whole time so I really can’t share. But she loves the pool. My goodness she does. She lights up in there.
I am not sure how she will handle being in a hospital room all day long for a few days. She does not fair well with boredom.
I think I am going to stop here. Andi is asking me to spell every word of the English language and it is really throwing my concentration off and Ollie has just woken up and is hollering from his crib. Why is it the only day he sleeps til 8:30 am (!) the neighbors dog wakes me up at 5:45am? Really? Really?

Wednesday, June 16, 2010

Miss Popular

This kid is far more popular than I will ever be! Look at how many people "like" my status and how many comments it got.
I felt on top of the world sharing such a huge accomplishment and seeing just how many people who are pulling for our girl.
Lily has yet to sit up again on her own, but she has been trying and I of course help her (because it is hard for me to watch her struggle!) but I know she will do it again. I KNOW IT!

Monday, June 14, 2010

Always surprising us!

I was sitting with my laptop on my lap writing a post, a lot of complaining about me getting strep (again!), then having an allergic reaction to an antibiotic (bad!), but while I am writing and talking to Andrew on the phone (yes I am that talented) I see out of the corner of my eye, Lily's head pop up. Lily was lying on the floor rolling around like usual and all of a sudden she is sitting up. My first reaction was, I must have left her sitting up? Right? But no, I specifically remember her not wanting to sit up. So then I'm yelling to Andrew, "she just sat up!" he of course doesn't believe me and questions what I questioned myself and then says he'll buy her an ice cream. Then there she sat with this little smile on her face. Don't think we aren't confident in this beautiful girl, we are, but we have worked with this since she was 2. We have worked on the steps with her forever and then out of the blue she just sits up? It's pretty freaking awesome! Just teaches us to never EVER think she won't learn something. I am mean and put her back to the floor and have my camera out, I will catch this on camera, well if she wants me to I guess! :)
(and to think I am home with her to see this!)

Friday, June 11, 2010

Seriously? Bug off.....bug!

Now Andi Jane is the 4th member of this family to get strep. Like are you kidding me? And of all the weeks she gets sick the week of VBS. She has loved VBS, she has gotten so much out of VBS. (VBS is vacation bible school that goes all week long, it is at church and very fun for the kids) she has come home singing the songs, she tells me the bible stories and just the other night she prayed for Joseph who is in jail because of his mean brothers. I mean how cute is that? She only got to go Mon – Wed then when I picked her up on Wed they said she said her tummy hurt, I figured she just needed to poop. Then we went to friends to swim and she was fine, then all of a sudden she wanted to go home. We got home and she went straight to the couch, I thought she was warm, but we were all warm it was 105 that day. But after we all cooled off in the ac she didn’t and the next day when she woke up she was hot and said it hurt to swallow…..sigh. Straight to Dr and yup, strep. Will this ever end? My goodness! So annoying! Now I am living in fear the other kids, or I will get it again. I am cleaning off everything and washing everything, but man this thing just seems to never die.
I chose not to put Lily in VBS this year, I felt like the past years she was just pushed around from station to station and wasn’t really involved. I don’t blame the church, it is hard to know what to do with her, but I just didn’t feel like sending her again. Good thing because I wouldn’t have been able to take her and not Andi. Yesterday Andi cried for almost an hour about not getting to go to VBS. Today she was so sick she didn’t even ask until 11 and I told her it was already over. Getting this child to take antibiotics is like getting her to walk over a tight rope over hungry lions. It took me 4 hours this morning to get her to take it and I realized we still have 17 more doses to go. Kill me now. She is so much better this afternoon and she really wants to go to the VBS carnival, but I am still undecided. I think the deciding factor will be how she feels and if we get another dose of antibiotics in her. Man, Lily and Oliver take it like nothing, but not Andi, no way. Ugh.
Next week Andi is scheduled for Summer Camp at the church where she went to pre k. It is all day for 5 days. Then the next week we have nothing planned. The next week Lily has her EMU (epilepsy monitoring unit) scheduled for at least 3 days. Grandma Cheryl will come and stay with the other two while Lily and I room up at the hospital under surveillance for 3 days. That is never pretty.
The July 8th we head to Sioux Falls for a long weekend! Andrew is having his 10 year reunion, my young pup of a man, and we are thrilled to get to see everyone! We went back for a funeral last year but it was just Andrew, Ollie and I and we only stayed one night so this time it is for fun and a long weekend. We are just thrilled. I am having a hard time figuring out traveling with Lily. We don’t know what car seat we can use for her on the plane and while we are there. She can’t sit in a booster and her car seat isn’t FAA approved and it weighs only about 80 lbs so traveling with it sounds like the least fun idea. There is a seat I would love to get, it is a size up from the one she outgrew and is a feeding chair and car seat, but we don’t have the time to wait to get it paid for by insurance and co insurance (if they would be so obliged) and it is about $900 so paying for it our self could only happen if our family doesn’t want groceries for about 9 weeks. Or I guess we could deplete our savings account and pray for no rainy days. Sigh. This is me complaining out loud. Well not out loud but out on paper, well on computer. We will figure it out, we always do, it is just getting harder and harder the older Lily gets and it makes me sad. An almost 8 year old should be the easiest kid to travel with and it is sad how difficult it is getting.
Enough complaining! We are thrilled to go visit and nothing will bum us out! The kids are going to have a blast with all their cousins! I seriously can’t wait!
Lily’s seizures are hard to maintain right now. She was having a couple bigger ones a day so I up one med and now the big seizures are gone, but the little jerky ones are more often and those make her more upset than the big ones, so I figure we should cut back on that one med again. Sigh. There is no happy medium. Never!
So that is what is happening, that is what is going to be happening. And believe it or not the girls start back at school on July 26th! Year round. Weird. I cannot believe we will have a 3rd grader and kindergartner. Wow!
Sorry for the bore. I will work on getting my funny back when this strep bug leaves our home!

Saturday, June 5, 2010


I had to take all three kids to Walmart yesterday, yes I do go to Walmart for certain things that although are certainly more fun to browse at Target for, they are cheaper at Walmart.
I wasn't going for much so I was pushing Lily with Andi on her lap while holding Ollie in my arms. Typical fashion.
We get what we need and check out, all going well. We walk outside and are asked to donate to some Vet thing, I give Andi a dollar and she puts it in the box. The lady asks if the kids want suckers, I say "yes two please". "Can she have one" she asks pointing to Lily, "no thanks" I politely replied. "Can she have a toy or something?" "No thanks" I politely say with a smile thinking in my head, yes the one thing we need more of in our house is cheap piece of crap toys. "Well can I give her some bubbles or something?" "No thanks we have some at home" I say trying to be polite but starting to get annoyed, she is fine. Then the lady says "well she looks really BORED" (much exaggerated on the bored). "She's fine" I say walking away thinking wow did she really just say that? I mean Lily looked like a typical 7 year old child (well minus the wheelchair) was she supposed to be over joyed about our trip to Walmart? Or was she supposed to be thrilled with a lady trying to give her crappy toys that are suitable for a 2 year old? I was feeling like taking my dollar back and I figured Target is worth the extra $2.

Friday, June 4, 2010


Trying to wrap up my weekend at the Rett Syndrome Family Conference is not an easy task and not a task I have been interested in doing. Well I take that back, I really want to write it, I just want it written and posted with out me putting any effort into it. Is that possible? Can I just think it and it show up? No? Alright, I will get to it then. I sure get a lot of writers block and I am not even a writer. I don’t know if it is to do with the fact that I was so sick, then I was at the conference that was all day every day then I catch a cold, then I get home and the kids of course want me as I want to play with them, then it is summer break and everyone is home, my house is a mess, etc etc etc. But instead of wasting my time saying why I didn’t write, how about I just get to it.
Friday was a hectic day and I was still running at maybe 75%, that is being liberal, I had to be at Lily’s school with all 3 kids at 7:40am for a breakfast with the principal. It was fun, Andi ate everyone’s donut while Oliver ran all over and I tried to sit and chat with Lily’s teacher. Lily took one bite of a donut and went into a weird seizure. Then she was quiet and not participating in the breakfast. Then we walk her to class, who was later that day having the end of the year party that I was missing, and I kiss her a million times and tell her goodbye. Then we head home where I get ready to go. My niece, Ariel, came over to take Andi Jane to a swim party for her end of the year party, I kiss and hug Andi and tell her to be good and she says “ok, let’s go Ariel”, she’d realize she missed me after the party I am sure and me and Oliver head to meet Andrew at his office and they took me to the airport. On the way to the airport I start wondering out loud, what am I doing? I’m going by myself out of town for 3 days. I’m leaving my baby whom I have never left before, who was still nursing once or twice a day still. I am going where I know no one. I was still sick and could hardly eat. Panic was starting to set in. Andrew like always reassures me that all will be well and this is a good thing and it is for Lily. It’s not like I was going to Abu Dhabi with my girlfriends for a week. (ok he didn’t say that, I just saw S&TC last night) We show up to the airport I kiss my baby all over and tell him goodbye, Andrew gives me a firm handshake and tells me to have fun. Ok maybe I got a kiss on the cheek; he was very frightened of me and my strep. And that was it. I was alone and heading to Co Springs. Security all alone was ridiculously easy. Then I sat and sat. I people watched and sat. I was next to a Starbucks and my throat still hurt so bad that I didn’t even get to enjoy one. That should say something.
Ok so I get to Co Springs at 6:30pm and I find the hotel shuttle but we have to wait for other people, it was a quarter past 7pm when we finally get ready to go when the shuttle driver turns the key and the engine doesn’t start. He throws his head back in frustration and I giggle. What is that not the appropriate response? I should mention that previously I was thinking I was given signs to not go. Oliver sick, then me sick, then missing Lily and Andi’s end of the year parties, so when the shuttle doesn’t start I’m thinking I need to call the airline and get back on the plane. But he gets jumped pretty quickly so I take that as a sign to stay. I think I would be the person who walks on an accident prone plane, seeing that I do notice signs but do nothing with them.
I get to the hotel, check in, register, put my bags in my room then get to the ball room where they have opening discussion. Well it was almost over and I stand in the back. I watch them do this ice breaker thing and I watch. I feel like a turd in the punch bowl. I am not talking to people. I am feeling awkward and homesick. Then the group breaks out and it is 8pm, I see that a meeting for CDKL5 is going on, I head there and then I automatically feel a sigh of relief. I see three moms who I am on an online support group with and we introduce ourselves and hug like long lost friends. It was only us 4 at the beginning and we chat. We are the only CDKL5 parents at the entire conference. Then in walks a Dr. and a British guy with IRFS who was very kind and helpful. It was very kind of IRFS to invite and involve IFCR and this guy was willing to help how he could. CDKL5 is not Rett syndrome. I guess there are some debates on having CDKL5 considered atypical rett syndrome. It is all very confusing, but from a parent, who knows nothing about the science, I saw a lot of girls this weekend and they seemed very similar to Lily and a lot of the meetings we attended had a lot to do with how we care for Lily. And that is what mattered to me. So we talk for a little over an hour. I was beat and starving so I wasn’t really “there”. At 9:30pm three of us go into the restaurant and we get a glass of wine and I eat. We chat and then head to bed. Saturday was a busy day.
Our first session was at 8am and it was Rett 101. Then Genetics 101. Holy crap, over my head. I can’t imagine Genetics 407 because I was a goner on that one. Then we had a keynote speaker who spoke to our hearts, not brains. She actually wrote two books that I have on my bookshelf. She wrote Writing to Heal the Soul which I went through years ago and she wrote Keeping Katherine but it was originally called Grief Dancers, which is also on my book shelf, but I have yet to read it. Her name is Susan Zimmerman and she was wonderful. I spoke with her afterwards and told her how much I enjoyed Writing to Heal the Soul and she was very gracious. She had us all in tears many times, but she was very inspiring. She did what I would love to do one day, write and speak to families. One day. One day….
We then had a great Dr. speak about what is right in these kids brains, instead of all that is wrong. She was great and I wish we could take Lily to see her in New York.
Then I got what I was meant to get out of the entire weekend. We had three women who spoke about communication. Rett girls don’t speak and have limited hand use, just like Lily and communication is not something that is easy done. We’ve had therapist try sign language, no. Using a switch with her hands, no. Talking, no. These women use their education, creativity and compassion to figure out ways to get these girls to communicate. I won’t go into all the detail of the how-to’s, but I will say it brought me to tears to watch videos of these girls who so many dismiss as mentally disabled, or gave up on because they didn’t reach the goals because of their severe apraxia, actually communicate via switches, or touch or this amazing eye gaze computer system. (something I wish Lily could get, but I was told kids with CVI cannot use it). It just shed so much light on me. I feel like so many people give up on Lily because she can’t communicate in the way professionals are taught to teach kids, but girls with Rett syndrome (and CDKL5 and probably many other genetic disorders) have this apraxia that makes it so hard to get the brain to communicate with their body parts. They know what you are saying, but trying to communicate is so hard. I feel sad that we’ve gone almost 8 years without understanding why Lily struggles and I’ve listened to others who aren’t familiar with her condition tell me she can’t do things. I have seen proof Lily hears us and understands so much more than we know. Just thinking about it makes me cry. Can you imagine living in a body that your brain refuses to let do anything. It is heart breaking. But I am so glad I learned all I learned last weekend. I will never talk about Lily like she doesn’t understand me, I generally don’t, but when I am talking with professionals they sometimes talk about her like she isn’t there and I will no longer let that happen. Oh my Lily.
We had lunch break then more talks on neurology, which I don’t want to brag but I knew everything they said, then ortho, then GI and then my brain was mush. I had to take a break. I went to the pool, plugged in my itouch and listened to my book and checked out. Then back to my room for a bath and nap and then met up with everyone for dinner. Then that evening we had a tribute reception. It was nice, they gave out awards and Kevin Black sang (Clint Black’s brother whose daughter passed away from Rett syndrome). They played a video with pictures of all the girls whose families were there and that was emotional. It is overwhelming how beautiful these girls are. It seems like it is part of the condition, to be extremely beautiful. I’m not being biased here either. I’m not.
There was a band later from Nashville who I am not sure their name, but they sang and people danced. The guy came on the dance floor and sang to the little girls on the dance floor, it was very touching. Many families brought their daughters and there are many variations of physical disabilities with them, some could walk and some were in wheelchairs. Just like the CDKL5 kiddos.
Sunday we had our first meeting at 8am and it was on CDKL5, we were a small group again but it was very informative. The president of IFCR, and my friend, spoke as well as a neurologist and scientist/researcher and I was very well informed with what I thought would be stuff I already knew. After our hour session the Dr. said he would be willing to chat with us so I missed a couple meetings I had planned on going and just sat with this Dr. and us moms and one dad for about 90 minutes. He was so nice and well informed and honest. I got a lot out of our talk and was grateful for that. After that three of us moms chatted by the pool. I was the only non committee member for IFCR (international foundation for CDKL5 research) but told them I want to help and I want to do a fundraiser and the ladies were very informative and motivational! They explained to me what we need the money for and how much we need. They are pioneers of this organization and have a long way to go, but everything has to start somewhere! We had lunch then went to my last meeting and that was on fundraising. I am so glad I went to that. They had such great information and inspired me to do something here in AZ!
Then I went back to my room for a bath and a nap. I cannot tell you the last time I had taken a bath and nap before that trip! Then three of us moms went to downtown co springs for a nice dinner. We had such a great time! We had drinks, great food and we just talked for hours. It was such a nice ending to a great weekend.
Then Monday I decided to hitch a ride with the moms to Denver and skip my puddle jumper flight and then we all went our separate ways and I was home before I knew it.
Greeted by the van full of my family who had just come back from up north with my parents, it was so good to see them all! At home we just went back to our old ways, we swam, we jumped on the tramp and we got take out for dinner. I tried some new techniques with Lily for communication, just something as simple as putting my hand on her shoulder and asking do you want this or this and whatever hand her cheek hit I went with that response. She was very responsive and if it was purposeful or not, I’m going with it.
I’m glad she isn’t going to summer school this summer. I am excited to try new things with her and be home with her. Most likely I will be working every summer after this one so this will be nice. Her last day of school was Wednesday and summer is in full effect.
I do have some programs for Andi to do this summer, but that is it. Lily and Oliver will be home the whole time. June 29th Lily has a scheduled stay at the hospital for the EMU (epilepsy monitoring unit) and Grandma Cheryl with be coming to help with the other kiddos while Lily and I will be at the hospital. We will be going to South Dakota July 8th for a long weekend and we are very excited about that! It’s been a long time since Lily and Andi had been!
Oliver has been totally weaned and it was so easy! He only asked once to nurse when I came back and has been fine with out. I am surprised at his appetite! He eats more than the girls each meal and he is only almost 16 months. So that is a note to his future suitors (is a girl called a suitor?) the way to this boy’s heart is his stomach! He is so cute and so much fun! I am really enjoying my kids right now; they are all so cute and just in fun stages. Andi is so excited about starting kindergarten at the end of July and oh my gosh I just can’t believe it is happening. I will have two kids in school. That is just crazy. I won’t know if she can ride on the bus with Lily until the start of next year (it is a matter of space), but I am going to think positive that it will work out just fine.
So wow, see why I was hesitant to post? I had way too much to say. My kids have torn the house to pieces in front of my while I wrote this with Spongebob as my background noise so who knows if this makes any sense. If it doesn’t we can blame Spongebob. We can blame him for lots of things.
Oh one more note, we are trying to get a TAOS orthotic device (look it up on Youtube) and our first request was denied. Then my appeal just got denied. We are going to try something else and if that doesn’t work we will appeal to the higher court. This looks like something that will help Lily so much, she would be able to be upright in our home, she can play with her siblings and she could walk in it if she wanted to. I don’t understand why we have to fight for everything, but the state services that are supposed to help for just these instances are totally refusing. But that is where we are on this topic.
Sorry for the length of this post. But I find it quite charming about myself, my lack of my ability to edit.

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