Saturday, April 30, 2011


God is so good! This morning I found 2 pills that we were almost out of in a place that I swear I never put them, so she got her AM dose! Then the package came in todays mail even though they told me yesterday it probably wouldn't be here until Tuesday!
So that is a huge stress removed from my shoulders.
Just wanted to post so no one was worrying about us over here :)
Happy weekend.

Ramblings of a stressed out mom

I don't ever remember the Family Circus mom ever looking frazzled, but I always remember Cathy being frazzled and that seems odd to me. Cathy was over worked and I assume underpaid, but c'mon the Family Circus mom was by far even less underpaid. Maybe she did have a stressed out moment, I'm going off some pretty old memories, but I just wonder why she didn't have her hair more frazzled like Cathy's.
I feel like my hair is totally frazzled. I get like this from time to time. I know I am allowed and as long as I don't stay in this frazzled place I'll be just fine. But I am frazzled nonetheless. I'm just so tired of drives to Phoenix for so many Dr. appointments. I am tired of keeping up on Lily's meds which I knew I cut too close and now we may be a day or two without, one that isn't FDA approved that we get from Canada that I simply cannot drive to Walgreens and pay for a couple pills so I have to hold her over. In my defense I called just in time, they were having issues with the credit card and didn't get ordered until Monday am, should have been in the mail but I guess Easter Monday is a holiday in Canada? It should have been expressed mail but they didn't. There are several issues, but I should have called with plenty of time, not just in time. Story of my life. I have enough bigger guns to hold her over and I am sure she will be fine, but it still sucks, leaving me feeling less than and stressing over her.
Even with the right meds she is a mess so who knows what will happen. Yesterday was bad. The dogs barked, woke her up from a cat nap, scared her and she started screaming, then after about 5 min of uncontrollable screaming she went into a bad seizure. Then she was tried and crabby the rest of the evening. We had plans to go to a friends so we asked our caregiver to stay later and give her a quiet evening at home with out us loud folks and when we came home she was happy. Caregiver said they walked for almost an hour and she was so happy. The only reason they came back was it was getting dark. Thank God for such wonderful people working with Lily.
Next week Lily has a follow up on her afo's on Monday and Wednesday is surgery. But after surgery Lily and I will be staying at home resting. I am not sure how long she will need to stay home for but I am planning her being out Wed to Monday.
It's 7am on Saturday morning. I got up when Andrew's alarm went off at 5:45am. I decided to put a pot of coffee on and get up. I've enjoyed spending the hour in the quiet doing what I want to do. But right now I can hear Oli singing what sounds like twinkle twinkle, but not one word is clear but his tune says twinkle twinkle. I have no idea why people get those big kid beds out. Oli will be in that crib until I'm thinking high school. I know he can't take it to college so we'll have to remove it maybe junior year?
I came here to tell a few Andi stories but I guess my days are consumed with concern for Lily I got sidetracked, but since I promise ramblings in my title I might as well fulfill that promise.
I wanted to share that the other evening Andi says "now he's gonna get really sleepy!" in regards to Oli. Andrew and I both say "Why?!" in quite a panic, thinking we've got benadryl, we've got klonopin, dilantin, topamax, banzel, etc you name it we've got it, so of course we are nervous. She says "I made him warm milk!" "oh" we say with a sigh....
And I wanted to share one more and this isn't really a funny story it is just kind of what we deal with on a minute by minute basis with a child with a mind that runs faster than a cheetah.
I'm in the middle of a lecture about her guinea pig, Elmer. She loves him. Will sit on the couch with him for hours, but he's gonna be a Weekend with Bernie Elmer soon by her lack of feeding him and giving him water. So I am in the middle of my you really wanted Elmer, you promised to care for him, Andi you have to see his water low and fill it.....
"mom did you know kangaroo's don't drink water"
And there you go as promised ... rambling of a stressed out mom. Off to get Oli who has now resorted to pushing the hand of the Build a Bear bunny who sings "all the single ladies" via Chipettes. Now he knows this will get him out.

Thursday, April 28, 2011


Finally we got the VNS implant surgery scheduled for Wed. May 4th. We gotta be there at 8:30am and my mom will help out with the other 2. It is outpatient, but no idea how long it will take considering the scar tissue and trying to make it work on the right side before moving to the left if necessary. I hate the thought of her going under and having to recover from a painful surgery, but I feel like we don't have many other options. It really sucks and for a total superficial reasons, I hate to think of having to cut her on her neck again, her scar is finally such a fine line that it sucks knowing it will be pink and noticeable again. Like I say over and over again if people are gonna stare at my girl she is going to look like a shining perfect angel. This is my superficial fears. I also have many real fears like there being difficulties, problems with anesthesia, painful recovery so no worries, I worry about everything. I am just silly enough to be honest about ALL of them.
I'm sure I will post before then, but keep us in your prayers please.
We had to stop horse therapy until her seizures get back under some sort of control and that totally sucks. She loves the horse and it just pisses me off seeing what her seizures take away from her. Please pray for seizure control for Lily.
Oh we took Lily today to re-do her EKG. Praying that comes back normal, we have to see cardio in June.
Tomorrow both girls have an eye doctor appointment.
Still waiting for a week with no dr. appointments. I may be waiting awhile.

Monday, April 25, 2011

My favorite?

Tubes in, no cries, never signs of any discomfort. The nurses all loved him and even the ENT kept saying how cute he was. That's our boy! Almost one week later and we swear he is repeating us more often. The child talks, just no one knows what he is saying. I'm sure it'll all come. I'm not running for a speech eval yet. Just gonna see if it just happens. I'm thinking the tubes are gonna make a huge difference.
He is doing amazing in ISR (survival swim) I just can't believe this summer he will be swimming. He is only 2!
I followed up with the geneticists and Lily's labs were all good but the EKG was inconclusive because she was moving too much, Andrew said no way he was holding her down and she was not moving. It doesn't matter because I still have to bring her in on Thursday to take it again. Friday neuro surgeons office called me back to tell me that someone will be calling me on Monday (today) to finally schedule the VNS surgery. But we still have to wait 2 weeks after the surgery to turn the thing on. She is still really having a hard time with seizures. On Wednesday we were at horse therapy and she just wasn't acting herself. Really floppy, tired, not her usual self on the horse so I said let's stop, I take her off, load her up in the van and just minutes later she goes into a really big bad seizure and I just said thank you God she wasn't on the horse. Man.... you gotta trust your gut with your kids. There is me and her therapist on both sides of her, but those type of seizures are hard and I don't know, and I don't wanna know how we would have handled that situation. My Lily. Why is it always so rough for her? I mean seriously. She loves the horse. And now I am feeling like maybe we should stop while she is so unpredictable and uncontrolled. It's frustrating to love someone with every piece of your soul and watch her go through something you have absolutely no control over. And I have tried. Believe me I have tried to have control over these seizures, but it is the demon that we can never beat.
We had such a great weekend spending time with amazing friends on Saturday and my wonderful family yesterday on Easter and the evening had to end abruptly because Lily was just screaming. We have no idea why but just screaming. It is so sad to not know what is going on in her sweet little brain. My Lily girl.
It's funny the other day Andrew might have suggested that Oliver is my favorite and I had to laugh. Because as us mom's know no child is our favorite. But we can have favorite parts of each kid and I will stand by that until the day I die.
Andi is like a best friend. She is the one I love to shop with, I love seeing movies with her. I love just going out to eat with her. I love her heart and her spirit. I think she and I will always have a unique bond that I pray always keeps us close. I see Andi as a savior in a lot of ways. She is the only child we absolutely did not plan for. She came when I was scared to death to have another child. But when she came she said "Look out! I am here!" and my world became brighter. I was in such a dark place with Lily, so sad, so lost, so unforgiving for given a child so medically fragile and then boom this bright light blinded us and I became enamoured by her. She is everything I wish I am, speaks her mind, loves openly, admits when she is hurt and expects wrongs to be right. I inly see bright for her future and love to be with her every step of the way.
Oliver. Well he is my baby. I so wanted him. He cuddles me. He loves everyone, but I know he has a place in his heart just for me. His blond locks frame his face so perfectly and his hazel eyes that I have never known before just melt my heart. His quick smile, his ability to make a roomful of people laugh and not be able to say one word makes me breathless. He steals my heart every moment he can. He is laid back like his mama and I imagine he will be the peace maker as well.
And Lily. My first baby. Will always be my baby. The one who catapulted me into motherhood in fast forward. Yes we all experience sleepless nights, but not everyone spends those sleepless nights in and out of hospitals. She taught me motherhood can break your heart and mend your heart in a matter of minutes. She and I will always be who we were the day we met. She will always be my baby. My tenderness. My achy heart. I call her my Achilles heel and I mean that in the kindest way possible. She will always be my weakness in my strength. She is like hair to Sampson. With her I am strong but she also makes me weak. Does that even make sense? My world changed the day she was born and she will always be who made me the person I like so much more.
So no one is my favorite. If they were all drowning and I couldn't save them all I'd just drown right along with them. They are the air I breathe and loving them makes me remember God's grace and mercy.

Monday, April 18, 2011

I don’t care if my nail polish isn’t perfect, well except I tried that crackle finish at a friends house and I gotta say it makes me look like a crack head, but I am still wearing it so I guess I don’t care that much. I don’t honestly care that there is marker all over our walls in our kitchen. I don’t care if there are finger prints on our sliding glass door. I think as long as our bathrooms are clean, the sink is empty and we all have clean underwear we are good. There are clothes piles everywhere. Clothes to resell on Ebay (you know when I have the time), clothes to give to friends/family with kids younger than mine, clothes to go to Goodwill, piles of clean clothes and always a laundry room filled with dirty clothes. I make no excuses for my house being messy. Never hoarders looking, but there are toys, there is equipment, kids chairs, etc everywhere because 1. Our home is less than 2000 sq ft and we have 5 people living there, along with 2 dogs, 1 cat and a guinea pig and 2. We have a lot of stuff, the things that come along with Lily is crazy. We try to keep diapers and wipes hidden aways, but once a month a company delivers 3 boxes of large diapers. We have 2 wheelchairs, a sitting tomato chair, an enormous walker… I think you are all getting the point. We are messy people, there are a lot of us and our home is small. But honestly none of this bothers me. Every single day of the week there is someone in our home that is not an official family member, but they feel like family. We have PT on Monday, OT and Lily’s care giver on Tuesdays, Wednesday I guess no one since I take Lily to Horse therapy, Thursday is caregiver day and Friday is caregiver and Music therapy. Sat we have a hab worker. So our house can never be Hoarders condition, but it always has things not where they are “supposed” to be (quotations because no one ever knows where supposed to go really is). Why air my dirty laundry (no pun intended.. ok yeah it was) because I wanted to get the word out there that I am not a control freak about most things. BUT when it comes for my kids I get incredibly anxious. Now babysitters that come and stay at the house I am fine with, we have schedules and pretty much the same babysitters so I am ok with that. But when I ask someone to take my kids somewhere, or do something I routinely do, I have issues.
Today I had to have Lily to get her AFO’s sized (by the way, I live for a week with not one single dr. apt. it has been soooo long!) but Oli had his swim lesson at 8:30am and Andrew had a meeting and my mom had a meeting. Ack! His lessons are important to be consistent and expensive to pay for and miss. He will be missing tomorrow for his tubes surgery so I did not want him missing today. My aunt (hi Gloria!) said she would watch him and take him. Ack! I got nervous. My amazing, lovely aunt whom I adore is more than capable of taking him to his swim lessons, yet I still got butterflies. I had to have everything out and ready for her. I gave her step by step instructions and I am sure she was rolling her eyes at me, but when I got a text that they found it no problem and he did awesome I had the hugest sigh of relief. And the same goes towards anyone taking the kids places for me. Not so much Andi when she goes places with her grandmas, but ask me the last time anyone but me took Lily to the Dr? Um when Andi was 2 weeks old. Ask me the next time someone other than me will take Lily to the Dr. um probably never. I had someone take Lily to horse therapy for me for awhile and it was just too stressful for it to be enjoyable for me. I’d just rather do it myself. So Andrew keeps mentioning us going on a little vacation and again my heart starts to palpitate. The thought of my parents or Andrew’s parents taking the kids places in the van stresses me out. Not because I fear something will happen to them, ok maybe a little, but more so that I know how much work it is to do and it bothers me to ask someone else to do it. It’s weird. If I know they will be hanging out at home, fine. Hanging out in Greer, fine. Going places… errr my heart! So yeah.. anyway, I have no point. I’m just rambling today. I am just thinking about everything I do for my kids and well specifically Lily and thinking of anyone else doing it makes me crazy. I pray the good Lord keeps me around a long time or else I will be haunting Andrew making sure he does everything the right way for those kids. And don’t even get me started on the thought of a step mom for them. That woman will be running for the hills when I get exorcist on her.
See this is my brain. Can you imagine my brain on drugs? I would be literally insane. I am never idle. My body never stops except to sleep and that is rare also. And if my body is idle, my brain certainly isn’t. Yes there probably is a nice little pill to correct this, but I’m not taking it. This is my pill, my fingers banging the keyboard.

Tomorrow is Oli’s tube surgery. I am calling Neuro surgeon probably tomorrow or Wednesday to see where we are at regarding Lily’s VNS surgery. I am gonna follow up with geneticists to see if labs and EKG were all good. And I am praying that once the VNS is in, we can go an entire month with out one single Dr. appointment, but knowing already we have a 2 week follow up with orthotics, eye dr for both girls next Friday I guess I am hoping maybe mid May will be Dr. less. You know April showers bring May flowers.. maybe April non stop Dr. appointments brings May with none. That may not be very poetic, but it gets to the point.

Pray for my boy tomorrow. He is a grump whenever sleep is involved so I am not looking forward to his grumpy butt when he comes out of the anesthesia.

And on a very serious note, please keep a family who lost their 2 year old son in a tragic accident yesterday in your prayers. We do not know the family personally but it is a close friend to a close friend of mine. The thought is unimaginable and overwhelming to think of. I’m praying for all the family and friends. I ask you all to do the same please. Sometimes life gets unmanageable and I have no idea why those things are allowed to happen, but our God is gracious and merciful and I pray there can be some kind of comfort in that.

Friday, April 15, 2011


Tuesday the Dr. said we can do one of two things, give his ears a couple months and see if the fluid goes away or do tubes. "Tubes!" I didn't even hesitate. We did the wait and see last year. He needed tubes last year. He'd probably be speaking a whole lot clearer had we gotten tubes last year. So 7:30am Tuesday (4/19) Oliver will get little plastic pieces in his ears and we look forward to hearing what he has to say.

ISR (survival swim) didn't continue to go as well. Tuesday he cried the whole time. Wednesday he cried when we pulled up to the house and kicked and screamed. Thursday he cried half the time (but Daddy came and his cries weren't as intense) and by the 2nd half when the pretty 5 year old came whose lesson is right after his, he immediately stopped crying and smiled for her and looked at her after each time he went under. (it starts so early!) Then today Andi was with us (long story about homework and missing a bus...) but he went right to the instructor, showed off with kicking, wanted to keep going to the bar and swam to the step and sat up on it. It was amazing! I am convinced in 4 weeks the boy will be swimming. What an amazing program. I was so nervous for this and honestly Wed I thought I don't think I can do this, he was just screaming for me, but today he acted like he was the star of the show. Just showing off, being hyper, just so excited with himself. I am such a proud mama!

This week has been so filled with ups and downs. Monday I was kinda taken back by Lily's appointment. I just didn't expect so much to be involved. EKG, referal to Cardio, sleep study rx, pulse ox, labs, it was a lot to take in. Even when you are used to things with your child not going right, that was still a lot to take in. Right before that appointment Andrew called to tell me we got a contract that we have been wanting/needing. It will change the company enormously. We will be more profitable, but also much busier! Great news! Dr. appointment not bad news but emotionally charging. Then shortly after that appointment I had conflict and I was left with hurt feelings that I have been churning and churning and it has left me angry. I've realized I, as I am sure most people, turn my hurt into anger because it feels better to be angry than hurt. But now I am just feeling sad. I am not a person who likes conflict. I actually do my best to avoid it at all costs and sometimes that is what gets me into conflict. But when I look at the big picture it isn't a big deal. I'm looking too close at the problem. Taking a step back and looking, really looking and realizing what is a big deal and it is Lily's dr. apt, getting her VNS scheduled, getting an appointment with cardio, getting the results from the blood test in, getting Oliver's tubes in, making sure Andi Jane feels special when she is the only one not going thru some type of medical ordeal, taking my family to a fun day event thrown by Lily's therapy company on Saturday and spending Sunday at church and at a family reunion of some sort. My marriage is what is important. My family is what is important. My health is important. I cannot keep running through my head what hurt my feelings. Life can hurt your feelings. I just needed to get perspective on things. That is what it is all about. Perspective. I had a great night last night with my MOPS mamas, we painted our nails and drank wine. It was a refreshing night that reminded me that life is not a bad thing, bad things can happen, but I have to keep my chin up and face it.

Face forward.

"We don't see things as they are, we see them as we are."
Anaïs Nin (1903 - 1977)

Monday, April 11, 2011

What a day! Oli had his very first survival swim lesson and to be quite honest, I have been a nervous wreck over this thing. I thought they take your kid and hold them under water while the kick and scream… not really, but I thought it had to be something awful, but not willing to mess around with Oliver this summer and hearing how amazing the results are and winning a free week in a raffle I knew it was the right thing to do. I begged Andrew to go late to work and go with me. I just thought this was going to be awful. I had to fill out tons of paperwork, pay registration fees and it is a weekly cost for several weeks, it is a big deal. Anyway today was the day and the worse part was he can’t eat prior. He did awesome! He went right to the instructor, who has a heated pool and did everything she told him to do. The lesson is only 10 minutes and she helped him find the bar first time with assistance and then less and less. When she put him under the water he looked like he might cry but he looked over at us who were hooting and hollering for him like he just scored the winning touchdown for the Super Bowl and then he smiled a huge smile! The instructor was encouraged he will do just fine. She said she could tell he has a laid back attitude… yeah thanks to me. We left feeling so full of pride for our little boy!
Let’s see how this goes every single day for the 4-6 weeks!
After that we had a couple errands to run, somehow I seem to managed to embarrass myself and a stranger by getting my tampons in his groceries. Well I don’t think I did it, I think the conveyor belt did it but whatever.
Then we had to pick up Lily and take her to the Geneticists. It was one of those appointments I thought we’d be in and out, but that was silly. Her assistant came in to talk about the past year and I told her about the pass out episode in the stander. I also talked about being concerned she is having breath holding episodes, leg cramps, constipation, seizures out of control, ummm. I think that is it. She came in and wanted to go over everything. She is awesome. Like not just an awesome Dr, but seems like the mom you want to tell her all about your headache knowing she will be comforting and help it go away. She was not happy to hear all about her stuff going on and she wanted an EKG right away, they did it there, she wanted labs done, they did them right away. She wants a sleep study done to make sure she isn’t having apnea and she wants Lily to see a cardiologist. Sigh. We were there over 2 hours! But I felt like Lily was being well cared for. Her blood pressure is on the lower side, so I am praying all the cardio stuff is just being overcautious and it was probably because of the low blood pressure, like her old mama. They also want me to call the neuro surgeon’s office to see what the hold up on the VNS is. Hello.. I do all the time! So I guess we are gonna have to wait to hear back from everyone. I’m hopeful that all will be fine. I guess if it isn’t we’ll take that one step at a time like with everything else. I wanted to add Oliver was awesome during this appointment. We were in a small room for 2 hours and he was fine with a sink and gloves to entertain him.
I also wanted to add Andi Jane rode her bike last night without training wheels! Finally! I know! But she was so excited she had to call both sets of Grandparents, it was so cute.
Tomorrow Oli has his appointment with the Dr about his ears and hearing. I’m curious to see what the next step is going to be. I hope his swimming lessons don’t have to stop or be delayed…
I just have to keep in mind Romans 8:28
“And we know that in all things God works for the good of those who love him, who[a] have been called according to his purpose.”

Wednesday, April 6, 2011

Andi Jane Star Student!

Andi has the fun week of being the Star Student!
Monday she brought in a star we decorated with pictures and drawings and quotes of things she has said.
Tuesday she brought in a bag of items that are special to her. I had to convince her that if she can't tell me what is so special about a PetShoppe gerbil she can't take it with her.
Today she brought in 2 of her favorite picture books and she choose My Friend is Sad and It's OK to be Different (both given to us by my awesome friend Marlene) I am also going in to volunteer today so that may make her day even better. I just pray I don't have to use glue.
Tomorrow is the day I send in a letter for her teacher to read to the class. I could write a funny story, tell something about Andi or write a poem. I choose poem. None of you writing experts judge me, this is for kindergartners.
And Friday we are skipping school all together and heading up north to Greer for a little getaway. It isn't the beach that I am craving, but the mountains are very cleansing. Here is my poem for our star child:

Andi Jane ordered on the 4th of July,
delivered on St Patricks Day,
we knew she’d change our family in a special way.
With big brown eyes and a smile that lights our world,
Andi Jane is some girl.
Whether she is helping with her special sister or changing the diaper of her baby brother, Andi Jane is always there to help her father and mother.
Andi loves her pet guinea pig Elmer and even has him sleep in his cage next to her.

Andi loves music, Justin Beiber and Spongebob too,
I bet you aren’t surprised she likes iCarly, are you?
Andi loves going to church and saying her prayers,
she loves reading books, with her there are many layers.
Andi loves kindergarten, Mrs. Barron and all her friends,
sometimes she wishes school would never end!
Andi was thrilled to be the star student this week,
thanks for making this week such a treat

Tuesday, April 5, 2011

Ortho Clinic

Lily's Ortho Clinc appointment was at 8:45am in downtown Phoenix. My only reaction is to laugh when I get those appointment cards in the mail. The ones with appointment times not selected by yours truly. But we load up, drop Andi off at my friends to take her to school, get Oli to the sitter, sit in traffic and make it 5 minutes late, stand in the check in line for 10 minutes making us now 15 minutes late. I had a total of 5 hours and 45 min of sleep the night before, Lily was up with leg cramps again, kids were staring at Lily in line and boy was I getting grumpy.
We went back to X-Rays pretty quickly and Lily sat like a big girl, I was proud. Then to the waiting room where we met Sally the OT, Mary the PT both who had to check on her wheelchair, Toby the dog came to visit, then Brian the resident. Finally at 10:15am in walks the Dr who immediately says "it's cold in here"
I of course agree seeing that anything under 80 is sweater weather for me.
"25 degrees, last time it was 32 degrees" he says
"I guess next time I'll bring my winter coat" I say
Blank stare
Blank stare
"Excuse me?" he asks
"25 degrees?" I reply
"Her spine 25 degrees, last time it as 32 degrees, this is a great thing"
"I thought we were still talking about the weather.... awesome!" I say
The Dr. laughs a laugh I assume he hasn't done in quite some time and replays what just went down. Like I wasn't there.
Then he pats me on the shoulder. I almost felt it was to say ahh nice blond girl.
I know he didn't really mean that. After that nonsense he blew me away with his words, talking about Rett Syndrome to the resident yet then explaining to him since her gene deletion is different then Rett get this... HE SAID... A DOCTOR SAID "all this means is we need to be more open minded"
AHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH I think this was the sound I heard in my ears and I think it sounds like what happens when they open the gates of heaven. Open minded? Really?!
I wanted to kiss him on the lips but I was still blushing from our previous conversation and never fully got my wits set back.
He said scoli is doing fine, her spine is flexible, keep doing what we are doing, hips are fine, look into some positing for bedtime to help with cramps. See you in 8 months (he doesn't want to expose her to X-Rays too often).
All happy news all the way around. Well except next time I will work on getting 6 hours of sleep next time. Hell maybe shoot for 7.
Oh by the way this is the Dr. we switched over to at the same clinic after the last guy kept saying to us "she'll never walk why does she need braces" after reading her chart and never touching her.
So that may help you understand why my heart sang songs of joy to such amazing news from an OPEN MINDED Doctor who doesn't read a diagnosis on a chart and immediately assume brace her, surgery in a few years. See you in 6 months.
Thank you Lord.

Monday, April 4, 2011

What now?

We got a call from the school nurse today. They said Lily was in the stander and turned super pale and her lips were light blueish. Ack! The nurse said she was really sleepy when they brought her into her office and she had a hard time waking her up. But she did wake up and went back to class. I called the class room and they said she was resting in the beanbag chair and had a snack. Sigh. I don't know if this is a real problem or what. Honestly I am a fainter. I've done it more times then I could count. In my modeling days it was embarrassingly ridiculous. I've tumbled down concrete stairs, off a tree stump (in stilettos nonetheless), on a taped show (thank the Lord it wasn't live), in a studio, must I continue? It was a combo of heroin and anorexia.

Ok I know that was what some of you were thinking. It really was a combo of low sugar, low blood pressure and standing with locked knees. It is embarrassing and never helped get stereotype of me puking in the bathroom after munching off the craft services table though. But maybe just maybe could Lily not only take after my long skinny legs, but also my fainting issues? Could it possibly be something that simple? I mean put me in a stander for 5 minutes with my knees locked and I can promise you a show as well. So obviously I will mention this to her Dr. but I am hoping this is the case. I'm sure they will want a bunch of blood drawn, but since we do (well we freaking better) have the VNS surgery coming up I will just ask them to draw her blood then.
Sigh. I just love this beautiful girl and I am praying that she is a little weird like her mom and this has nothing to do with stupid CDKL5.

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