Calm Amongst the Chaos

Mama of 5 seeking calm in the chaos

Andi Jane Star Student!

Kim Nothdurft

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April 6, 2011

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!

Ortho Clinic

Kim Nothdurft

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April 5, 2011

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.

What now?

Kim Nothdurft

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April 4, 2011

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.

Can you hear me now?

Kim Nothdurft

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March 30, 2011

Ok Oliver’s hearing test update. Not as I thought. Apparently he has some fluid behind his right ear, which seems to be at every Dr. apt we have ever been to, which is causing him not to hear as clearly in that ear. At one point during the hearing test there was a higher pitched quiet but not whisper sound to his right that I was sitting there dying on the inside wanting to yell don’t you hear that Oliver??!?! It wasn’t horrible, that was the only really noticeable spot he did not hear, it seems like his left ear makes up for a lot of the loss of the right ear but now we have to follow up with the hearing specialist/ENT on Tuesday and go from there. Sigh. I just swore they would have said he hears just fine lady …. but that is what I get for swearing.
Next up Andi Jane. The diagnosis is still sinking in. I’m not quick to do anything right now but let her be. We are going to watch what she eats (as much as we can) and try to take this diagnosis one step at a time.
And Lily. Poor seizing Lily. This AM while having her sit on the floor before I got her in her chair for school she fell back with full force, banged her head and had a huge tonic clonic. Good morning to you sweet girl…. yesterday I called neuro surgeon asking what the heck is going on and guess the freak what?! The nurse from the other clinic, the one I called and got an attitude from telling me she hadn’t yet dictated the notes and will send them when she can… NEVER SENT THEM! The nice lady I spoke with yesterday said there isn’t much they can do without the notes, in other words insurance hasn’t even been notified yet for approval. I let the lady know this isn’t breast implants we are waiting for this is something we are praying that will give our daughter a better quality of life, these seizures are at an all time high (well not as bad as time leading up to brain surgery, but an all time 2nd high) she was very nice and said she would call the other nurse and get a fire lit under her. Well since I can’t trust that is actually the case I will be on the phone yet again today. She also said our insurance is a quick one to deal with and this surgery should have been done weeks ago. It’s in your hands God…you have your reasons.. I know you do. You have to! Because if it weren’t I’d actually be even more pissed than I already am.
This just goes to prove NO ONE will care about your child like you. NO ONE! So be annoying as hell if you have to. If you want your child cared for this is the only way it will be done. Sigh.
I know the VNS will not be a cure all, but it has to help some. If not I am not sure what other road we will have to venture down. We can still try keto diet again but with a kid who only has a few life pleasures taking away one of their favorites is so tough to do. Sorry Lily no pudding, how about a butter pop?
She also has a follow up with Ortho next week and I am afraid scoliosis is getting worse. I don’t want to hear we need to brace her. Pray for that one too please. Did I even need to ask you to pray for the VNS surgery?
Oh we got her glasses ordered! Now someone just needs to go to the mall to pick them up. Cute, pink Barbie glasses with transition lens. I’ll post pictures when I take them. Along with Andi’s birthday festivities….
And Oliver will start survival swim soon. Something I have been deathly nervous about. I just am such a wimp with my baby. These classes are expensive and time consuming and I am just so nervous to watch my baby learn to swim this way, but I don’t want to spend all summer freaking out around the pool either. I need him able to get in the pool and feel comfortable. I’ll keep you all posted on all areas.
Please keep us in prayers.
XOXO

Need to getaway?

Kim Nothdurft

4 comments

March 24, 2011

I posted on FB that I want a vacation and everyone seemed to 2nd, 3rd, 4th etc the idea. I see that I am not alone, when you have spring break for 2 whole weeks and you go nowhere then look on the social media sites and see people sharing vaca pictures it kinda bums you out. Is there a new word for that condition? I’m sure the Today show will explain this soon… do you suffer from social media vacation envy depression….
Whatever anyway, I so desire my family on the beach. Is that so much to ask? Actually right now, yeah. It is 😦
Lily is just having ridiculous seizures. Yesterday I took the kids to open gym (2x in a week) and I was having Lily sit on the mats with her back against my legs while I stood and boom she dropped on her face and went into a full tonic clonic seizure. Then she was exhausted and fell asleep. Then she had another that evening at home on the floor. And that is just an addition to the myoclonic clusters she is having and of course the atonic drops that just come out of no where.
I’m so sick of seizures. I hate them. I can’t get an answer from neuro surgeon if insurance has approved the VNS implant. I don’t want to call and have him mess with the meds again. It never gets us anywhere. I hate how intense her seizures are and how intractable they are. I can take everything, the wheelchair, the diapering her, the lack of communication, everything, but why must we have to watch her body suffer all day long from these stupid seizures. Yes Andi Jane I said stupid, I know it is a bad word, but I’d like to say so much worse.
Oliver has his hearing test tomorrow. I’m nearly positive he can hear well, I was whispering behind him and he was grumpy and he’d say “NO!” when I whispered to him. He is grumpy often. But we have to have the hearing test if we want a speech eval. And I think he is ready for a speech eval. He seems to be picking up more words, but compared to where he *should* be and where he is is a huge difference. I know better than most about the *should’s* and that is why we’ve gone this long without any concern from me, but now it is time to be proactive. When he can communicate with us all our lives will be better. I know he wants to say more than mine and no. Right? Well he is 2 maybe that is all he wants to say.
I’ll update tomorrow. Someone send me some sunshine we can implant up my hiney I think I need it.

The pleasures of being a woman

Kim Nothdurft

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March 23, 2011

“I don’t want to go to the Dr for that, it’s embarrassing!” Me
“People get pregnant every day as a result of sex, that isn’t embarrassing” Andrew
“Babies are cute, bacteria in your urethrae isn’t cute!” Me
But I should have just gone yesterday. I get these dang UTI’s like 2-3 times a year. They are a pain in the butt. Well…. not butt… but you have to go to a dr or in my case urgent care pay $60 then $20 for meds. But I should have gone yesterday but I just thought I could wash it away with lots of cranberry juice and water, but I woke up today feeling horrible! Went to urgent care at 8am (Andrew stayed with the kids so I could go alone being that it’s spring break)turns out it started going into my kidneys, I had the largest amount of whatever they check for you and protein in my urine. Gross. Anyway, got some meds $80 later and now home with the kids who are currently hitting and fighting. Yes a 6 year old and 2 year old. Sigh.
Here is what I just heard ” [screaming] when mommy and daddy get me a drum set I’m not sharing it with you!” Andi Jane… what is she talking about? What drum set? She’s crazy.
We need to do something today, I can’t stay home with them and listen to this all day.
I apparently find it embarrassing to go to a Dr for a UTI, but apparently not too embarrassed to share with the internet. Sweet.

Rainy Day

Kim Nothdurft

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March 22, 2011

It’s been a crappy day. It didn’t start that way. The kids are going on week 2 of spring break. I woke up at 7:30am and no one was up yet so I caught up on RHoOC then Andi Jane came in my room and said “good morning mama!” The perfect start to any day! Then she told me she didn’t pee in her undies (for the 3rd night in a row, a huge conquest!) and then I got out of bed to get the other two up, fed and dressed to take them all to open gym for a playgroup set up by our MOPs group. I was excited to take the kids there today, I thought it was a perfect outing and it was. It was fun watching Oli jump and play and Andi Jane had a great time. I even think Lily enjoyed me bouncing her on the soft mats. It was a grey rainy day and loading and unloading the kid’s sucks when it is raining, Lily just gets soaked going up and down on the slow lift. After the gym Andi Jane had her 6 year well check. Andi and Oli were fighting and yelling and absolutely out of control at the Dr. office. Like more than I have ever seen before in this type of place. It didn’t help that we were discussing Andi Jane and her ADHD diagnosis. It was embarrassing and exhausting. We aren’t medicating yet. I still need time to mill this over, but the diagnosis is pretty much set in stone now. We all filled out forms (Andrew and I separately and her teacher) and she scored highest in the attention deficit part but qualified enough to add the hyper activity as well. This bugs me. It bugs me a lot. I have heard people describe their ADHD kids as “special needs” kids and I would get so annoyed because comparing them to Lily was like comparing apples and steak. No comparison, but now honestly having a kid with this I get it, if I didn’t have Lily to compare her too, I think I would think I had it rough with Andi. I don’t think I’d ever call her special needs. High needs. Highly spirited. Out of control. Sure, but not special needs. But in all honestly she is special needs if you break down the word. The child is not typical. I know she isn’t. I never thought she was. But to actually hear that some of her actions are out of her control bothers me. Makes me sad. Makes me think I was too stressed with her while pregnant. Makes me think I should do more or less. I don’t know. I’m tired. I’m tired of worrying. I don’t want another kid with a brain/mood altering drug. I don’t want this. I love my kids so much and it is exhausting to stress so much about them. Now I need to look into if Andi needs an IEP. The pediatrician also suggested family counseling, to help us with behavior plans. To help her with self esteem issues. Not that she has any problems in that area, but he said it could come up later. Andrew and I just barely graduated marriage counseling, now we gotta do family? Sigh…
Oli has his hearing testing on Friday. I’m sure he is fine, but his lack of vocabulary is starting to worry me. And most likely he is fine, but finding out now is the best thing I can do for him. For us.
Lily is continuing to have her seizures. She had a big one on Saturday night. Freakishly big. She continues to be constipated. She continues to have her crabby spells.
So after this day I came home deflated. Sad. Just wanting to lie down. I had an insane head ache and I just wanted to rest. I decided to spend some time in a work book I’m doing and spend some time in prayer. Tears were flowing. Flowing from stress. From heart break. From the whole lot the past 6-8 months have brought. My head ache. Then I sucked it up and put my smile back on and went out to face my life, but then I got on facebook and read that a sweet little 4 year old in our CDKL5 family had lost her life on March 16th and it sucker punched me. I don’t know the details but I know a little girl with the same disorder as our Lily lost her life at only 4 years old. I’m shocked and feeling so guilty for pouting and whining about my day when I saw what another family is going through. Life always has a way of putting things in perspective. I love my family. I love my life. Yes it isn’t easy. Yes we got soaked in the rain. Yes one of my kids can’t control her self at times. Yes my 2 year old has the vocabulary of a 16 month old. Yes Lily has seizures. Yes she has constipation issues. Yes life is hard. But it’s our life and we have to live it every day like we don’t know what the next day will bring. So I finished my night playing a game with Andi. Giving Lily a bath and lotion rub down and singing and rocking Oli. Giving them all an extra moment of my time instead of counting the minutes until I put them down. Instead of saying we’ll play tomorrow. I did it tonight. And when I close down my laptop I will pray for the family that has to endure another day of not having their sweet daughter to care for and love. And that is what I will remember when I feel like getting the violin out and playing me another sad song.

Update of No Sort

Kim Nothdurft

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March 15, 2011

I’m updating with nothing. I’ve got nothing on the VNS yet. But I am taking Lily to get sealant on her teeth tomorrow at 8am. Yippy! I’m praying for another peaceful experience like last time. At least Grandma and Grandpa N are here and I can just get up with Sissy Sue and leave the house probably before anyone else even wakes up. I’m on a no sleep crusade right now anyway so it really won’t bother me none. I do the birthday video for my loves every birthday and Andi’s seem like I use the same pictures over and over again while just adding the most recent years photos so in an effort to not do that this time I am staying up way too late and only half done. I am sure it’ll be another late night tonight and sometimes I wonder why I do this every year. I am such a sentimental sap, but I like to think come Andi’s 30th birthday and she is just going on her first date we would like to have all this prepared for her wedding you know when she is 35. 😉
Whatever. The kids love it and when I say the kids, I mean Andi. Since she at the moment is the only one who can let me know they like it. She has a lot of opinions in as what to put into her video and I can’t imagine if she woke up on March 17th and there was no video for her. I think she’d sell me on Craigslist. But I do love her so. It will be evident in the songs I chose this year, that you will have to wait to see on Thursday as well. I think every year I just get sappier and loose my sarcastic edge and it is rather sad. Makes me wanna cry. Get it?
Ok never mind.
Here’s my update. I don’t have one.
Oh I did have a break in my lent vow and that is only because Saturday God wanted me to chill out so he gave me a 102.5 fever and nothing felt ok in my tummy but 7-up, but I hardly consider that cheating because I don’t even like 7-up on a good day. Now had I blamed the fever and got myself a Dr. Pepper with crushed ice, vanilla and cherry syrup, maybe you could call me out. But no. I have not done that.
We are enjoying Andrew’s parents. It is so nice to have more adult than children for once. You feel you might have the upper hand… might… but seriously Grandma helps me so much it is hard to going back to regular life when they leave, so it has been nice. And high five to God who let me get sick while we had family in town who let me hibernate in my room the whole time. How often does that happen to us moms? Never?!
Oh we started hippo therapy back up finally. Yay. She went last Wednesday and it was just like riding a bike for her. Well you get what I mean. I guess it was just like riding a horse for her. She was great no matter how sucky her seizures have been she rocked it. We went yesterday and we go tomorrow for a make up. She’s literally back in the saddle again.
Anyway…. this post was like a Seinfeld episode. Just minus the million per episode. Darn.

Not looking good…

Kim Nothdurft

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March 9, 2011

Oh gosh I am so annoyed! I called Neuro Surgeon’s nurse to see where we are at regarding insurance approval and she said well I haven’t even done the dictations from last weeks appointment, she said she was not the person who handles the insurance approvals but they take several weeks and not a quick process. Ugh. I didn’t like her much. I did get the number to the lady at the office and will give her a call on Friday to make sure she got her dictation notes which they need in order to make the insurance approval request . I know the approval does not take that long if you are insistent and maybe I will do it instead. Anyway, to think the surgery will take place next week will not happen. I was so hoping to do it while Andrew’s parents were in town to alleviate some stress regarding the other kids, but even despite my best efforts it is not gonna happen. Oh well. I know I am not in charge, so I will just relax and believe it will all fall in place as needed and we will be just fine.

In other news the most relentless child on the planet willed another tooth out.

And Oliver tried to cut his penis off last night with play dough scissors. All the while it didn’t cut any skin, he sure pinched himself pretty badly. This was a popular post on facebook and one of my favorite responses was… did you tell him he may need that later in life? Lol.. gotta love kids.

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