Calm Amongst the Chaos

Mama of 5 seeking calm in the chaos

Cut throat

Kim Nothdurft

no comments

February 23, 2010

Last night we were around the table for dinner and Andi, as usual, was bouncing off the walls, reaching too far and knocking things over. Andrew as usual threatens a ridiculous threat that he won’t follow through with, I hope, and tells her if she reaches instead of asks again he will cut her fingers off. I decide to play along and tell her that daddy used to do that for a living. If kids were bad the daddy’s would call daddy in to cut the kids fingers off. She of course didn’t bite and said, “what’s their names?” I said “well I know about Billy whose son Jacob wouldn’t listen so daddy went to their house and cut his fingers off”. Then I added in that was how daddy used to made his money, but he quit doing it because he didn’t want to be mean anymore.
Andi sits for a minute absorbing this and says “you should do it again dad”, “why” I ask astonished, “so you can make more money and I can go to Ayden’s (her cousins) birthday party in South Dakota.”
Wow. I knew she wanted to go to his birthday party, and I told her we didn’t have enough money to fly there for it, what I didn’t know was she’d risk little children’s fingers to get there. Who is this child? She couldn’t possibly have come from me.

**note to public** no fingers would ever be cut off. No CPS calls necessary.

Make a Wish

Kim Nothdurft

no comments

February 22, 2010

We make wishes off fallen eyelashes. I know this isn’t a new revelation, I did it as a kid and I am passing it onto my kids. Andi just loves it when it happens and sometimes I catch her tugging on her eyelashes trying to get them to come out, I let her know they have to fall naturally.
This morning as I fed Lily her breakfast I saw on her cheek a fallen eyelash. I told Lily about it and asked if she wanted to make a wish. Like often I felt like my words fell upon deaf ears. I called Andi Jane into the room and said “Lily has a fallen eyelash, want to make a wish for her?” I told her that her wish has to be for Lily and she was so excited to do it. She blows and looks at me with her big brown eyes and says, “I can’t tell you what I wished for, but Lily would love it” (she says love very dramatically). I can only imagine she wished for Lily to get a new toy that Andi would adopt, or pizza for dinner, but maybe it was something a little deeper. I ask Lily, “did you hear that? Andi made a wish for you. What would you wish for Lily?” I know the question is for me and my mind races. What would Lily wish for? Would she wish for something big, like a cure for CDKL5? To walk? Talk? Or would her wish be smaller? Maybe she’d wish that I could know her cries. Would she wish for me to understand her better? Meet her needs quicker? I have such a hard time when she goes through these crying spells. I just don’t know what she wants and what she needs. I just wish I knew. I guess we can always wait for my next fallen eyelash.

Crabby Pants

Kim Nothdurft

1 comment

February 21, 2010

Lily continues to fuss for us, it is typically around 4-6pm. She has lots of myoclonics and atonic drops during that time and then she has a larger tonic clonic, then more fussing then she relaxes. I try to stop it with a small dose of klonopin but that rarely helps. I don’t know what her deal is and why it is happening like it is. She is also refusing to eat much and she is really struggling with going potty. She constantly needs help with medication and it is so frustrating that her body won’t just do what it is supposed to do. I am making her go daily to try to prevent her from getting tummy aches, but you just never know what is going on with her. She’s just not herself lately. She is really fussy right now as I write and it is 2pm on a Sunday afternoon. Not sure what she wants or needs and really wish I knew. She loves going outside but it’s been raining all day so maybe being cooped up is bugging her? Who knows?
Andrew went up on a snowboarding trip with his friends this weekend and it is a lot of work to have all three alone without much help. I did use our nurse on Saturday because I had already made plans a month prior and didn’t think I was taking any kids with me so at least having someone for her made things a little easier. So anyway, that trip is his birthday gift. And I am so working on a girls trip and soon I hope! It is hard though since Oliver is still nursing and still not sleeping through the night. Sigh. I need to toughen up on him… but he’s my last. He’s my baby.
Well there are so many things that need to be done. I better get to it. Just wanted to check in, I know it had been awhile.

12 mo stats and…. complaining

Kim Nothdurft

1 comment

February 9, 2010

Oliver is officially a string bean! 20 lbs (14%) and 31″ (90%)! I am so used to my big girls it is surprising to me to see how tiny he is. Andrew gets mad when I call him tiny, but he totally is.
His right ear is still not clear! We are going on month 2! We are going to try another antibiotic and go back next week to see if it clears up.
Lily still has a runny nose. It is a full time job wiping her nose. It is exhausting. He says I should try a allergy medicine. I’ll see. I think it is time she goes to an allergist again. This runny nose is just seriously ridiculous. It would have to be one of the top words to describe Lily. Pretty, sweet, runny nose.
Oliver’s ears are causing a sleepless household and it is making a lot of crabby people. Again… exhausting. He was up 3 times last night.
Andi has a constant cough and her Dr. wants to look at her more in depth next month at her 5 yr check up to see if she could be heading towards asthma. Sigh.
Anyone have any good news for me because I could sure use some. I won’t even get into work. A family supported by construction field right now? No good.
Anyone have a good job for me? Can I get paid to do something I enjoy? I’m super inflexible if that helps. Double sigh.
If I get 8 hours of uninterrupted sleep I promise a better update, until then my friends the sky is falling.
Oh tonight I am going to a TAOS seminar (youtube it) I think Lily will be able to walk in that thing, That is good news. Probably dealing with jack ass insurance folks will make it bad news. Again give me 8 hours and I will put a positive spin on that.

First apologize, then complain

Kim Nothdurft

3 comments

February 1, 2010

I feel like I need to apologize for a part of my post yesterday, I was on such a high from being inspired, having the conversation with that family and just feeling like a completeness with my church family that I feel like I may have been insulting to other people’s religion. Some people may love going to church where they sing out of hymnals and love hearing the scripture read. It was not my intent to be disrespectful any other religion or practices of their religion, I was just very excited about my own. I realized it was like two best friends hanging out and one says I just love my new DD’s I paid $7,000 for they are perfect and I can’t imagine ever being an A cup again. All the while the other best friend is sitting there with her A cup boobs that she has always liked and starts feeling a little insecure. Not my intention to show off my DD’s not at all. If you are happy with your A cup than that is all that matters.
We live in America where we have the freedom to explore whatever spiritual avenue we want to explore and that is a right that I love and honor and please don’t be offended if you like hymn #82.
I feel better now, do you?
Now let me start to complain. At the geneticists urging I went ahead and got Lily the Flu shot, just the regular seasonal flu shot, not H1N1. She hasn’t had it since she was 4 and is fine every year without it. I think the less in her system the better. BUT the geneticists made me feel that if Lily got the flu she could suffer some major complications, death included. Well all I could think about was her getting the flu and dying and I would be blaming myself for not getting her that shot. I would have to live with going against medical advice for the rest of my life. So she got the shot on Wednesday morning when I took her in for the antibiotics. Wednesday afternoon she started a huge hissy fit that lasted about 2 hours. She does go through spells were she is fussy in the afternoon so I didn’t think much of it. But then she did it Thursday afternoon and Friday as well in Greer Andrew said. Her cold got worse and so she has this thick runny green stuff that just won’t stop and that is still going on today (day 5 on antibiotics). And the real kicker is her seizures are worse than ever. Like her atonic drops have been getting worse, but this morning she had a full fledge tonic clonic that made her so sad (as well as me) and then so tired. And then she had to still do horse therapy, OT and music. Poor kid! I did take her to school afterwards because she seemed to be in better spirits, but of course told them to call for any reason if I need to get her. So is this all related to the flu shot or am I crazy? I forgot to mention her lack of sleep. She didn’t sleep but maybe 5 hours each night in Greer, much to Andrew’ dismay, and last night I heard her from 4 am on. So the lack of sleep could have triggered the seizure, but then why the lack of sleep? What the holy crap is going on? I pray I didn’t do the wrong thing giving her the flu shot. I am just so tired of having to know everything and I really know nothing. It is so hard being a mom period, and then you have to add all this gooey layers that complicate everything. Andi got the nasal mist (flu shot) on Wednesday and I am guessing that is why she has the cold symptoms, low grade fever and cough but this was her first flu shot ever in her life, but she gets sick so often that I decided to have her get it. We will see if it is all worth it. I don’t get it myself and am fine every year. I just got scared with the whole Lily could die from the flu. Call me crazy but use that word and Kimmy gets a bit freaked.
I have a call in with neuro and am anxiously waiting for his call. I am not all that patient and will start messing with her meds myself if I don’t hear from him soon. It’s how I roll.
That is my update for the day. Not sure if this post will cause more problems than my last because I know what immunization talk can stir. Don’t cyber yell at me if you think I shouldn’t have gotten her the shot, because she already got it and I am already uneasy about it.
Geeze next post should be about politics, and then I’d have all the hot topics covered in one week.

Amen!

Kim Nothdurft

no comments

January 31, 2010

It took me awhile to send Lily to class at our church. Then when I got comfortable with the kindergarten class I kept her there for 2 years and then finally this past September we put her in a class of kids her age (2nd grade). The room is separate from the sanctuary so this was scary for me. She wasn’t just outside the door; she was outside the door into outside and into another room. But we took her. Andrew typically drops the kids off since I need to get to my class to teach aka baby-sit and he always tells me about this little girl who is so nice to Lily. I think it is sweet, but ignore him since we are always busy talking and chasing kids. So one day I am the one to drop off Lily and there she is. She says “Lily is here!” she shoves a chair out of the way and helps me steer Lily and sits right next to her. I’m caught a little of guard by this as most the other kids just stare as we wheel by. I say bye to Lily and go into church and tell Andrew about this little girl, he lets me know that he’s told me about her many times before. Well I can’t get her out of my head so today with a sleeping baby in my arms I ask the children’s ministry leader who this little girl is and who is her mom. I needed to meet this woman. She gave me their names and I was going to look them up when I got home, but while I was in the nursery waiting for moms to come pick up their kids, in walks a darling family asking to see Kim. I say I’m Kim and recognize the little girl, they tell me that they were sent here to talk to me and I just blurted out “I just wanted to thank you for raising such an awesome little girl” I was blubbery and rambled and not really sure what I managed to get out. I had planned to formulate a well written email thanking them. Because I am much better in this form that verbally. But there they were right in my face and the mom started to cry so then I had to change the subject since I’m not a fan of that crying stuff. I found out that it is indeed a small world and her son is in the AM class that Andi attends PM. The dad told me how he appreciated me telling him what I told them. I’m not even sure what I said, but I just needed them to know that their little girl made my world feel safer. I’m sure they already were but I wanted them to be proud to have such an amazing child with a heart like that. I’m weepy and emotional today. That did something to me. Being able to let parents know that they are doing the right thing, made me feel so good.
A few weeks ago my beautiful 19 year old niece Ariel spent the day with Andi Jane and a couple days later she sent me and email about Andi and what a great kid she is and tells me it is because of our parenting and because of Lily that Andi is who she is. That email swelled my heart and I feel that I gave those parents that feeling as well today.
I love our church. I love that I get to be a part of a church that doesn’t just say pray for others, it does for others. A team went to Haiti with Dr’s and nurses last week on a whim, because it needed to be done. I will share the blog so you can see for yourself the selflessness of these people. This church cleans up neighborhoods in our own city as well as builds homes in Mexico and changes lives in Malawi. I came home today knowing that money I sent went straight to Haiti last week. I love being a part of something that doesn’t just say we should do something, they DO something. I come home every Sunday feeling empowered to follow my dreams and passions! Church isn’t just signing a hymn from page 83 and reading scriptures that make no sense. It is living and loving God by living and loving other people. Can I get an Amen?
Here is the blog:
http://www.paulguntherjr.blogspot.com/

Alone

Kim Nothdurft

no comments

January 31, 2010

I’m sitting here at 9:52pm, just barely got the boy to sleep (what was that all about?) and the house is quiet. Andrew went up north again and this time took with him Andi Jane AND Lily. It’s a nice break, but honestly, I’m bored. I had to do a lot of cleaning to get ready for Ollie’s party next week and yeah, well the baby isn’t much for conversation, so yeah I am bored. My mom used to tell me that I must be a boring person as a rebuttal to my 20 calls a day to her at work during the summer break telling her how bored I was. So I guess I am indeed a boring person. It’s amazing how busy I always thought I was when I just had Lily and now caring for a baby by itself is a piece of cake. It isn’t really, but compared to having all three at home, yeah it’s easy. I’m tired and talking like a crazy person. It’s funny how different life is when you are alone. Like eating for instance. Last night I made myself a nice salad, a yummy pasta Andrew doesn’t really like and had a beer. But today, today I did not feel like cooking yet I had no idea what I wanted to eat. I had the opportunity to eat anything I wanted, yet had no clue. Andrew gets so annoyed when I say “I don’t care” to his dinner ideas and this should be proof, all alone with any food choice I desire, and I still don’t care. I did however have to eat and made a nice choice of Pei Wei.
Oliver is being a sweet boy despite the fact he still has an ear infection. We went into for a follow up and his ears were still a mess! I was shocked! He is clingy, but I sort of thought it was a personality flaw. Maybe once they do clear he will be able to do an activity for longer than 15 minutes without looking for me and crying at me when I walk away to do laundry. You’d think I kicked him in the head when I walked by him without acknowledging him. Tears and all. My baby boy. He is a walker now too. Like that is what he does, no mas crawling. No mas dirty knees, maybe the calluses will be gone now.
Lily got antibiotics as well to try to get rid of the green gunk she’s had for freaking ever. I haven’t seen her today, but yesterday it was still pretty bad. Poor kid. She needs a nose sucker machine. Anyone have one?
My mom called me a little while ago and said Andi Jane is coughing and has a fever. I couldn’t believe it. She was just sick 2 weeks ago with fever, ear infection, pink eye. How can she be sick again? She got the flu mist on Wednesday and I was told to keep an eye out for cold symptoms, but my mom said she is very hot and coughing bad. WT?????? How can a child be sick that often? I don’t get it. Andrew said she only went down the hill once and was crying and whining and that makes sense now. My poor girl. And she was breast fed for 26 months! There goes the healthier kids argument.
Wow! Call me Ramble Mcrambler. I’m tired, good night. My family (the rest) comes home tomorrow!

Geneticts update

Kim Nothdurft

1 comment

January 26, 2010

Monday my mom and I took all three kids to Lily’s geneticist appointment at the hospital in downtown Phoenix, the appointment was at 8:45am. We amazingly made it there within minutes of the appointment, yet didn’t see the Dr. for over an hour and because she is so thorough she sat with us for well over 30 minutes we ended up being there over 2 hours. Thank God my mom came to help! I would have gone crazy!
We really heart the geneticist. That is modern terms for love. We saw her years ago when Lily was an itty bitty and after all the tests they found nothing, I gave up on that avenue for awhile. It’s funny I never called her for the CDKL5 test, but we weren’t following up with her at that time and I thought I could just get our neuro to do it. Even when he shut me down I still didn’t go to her, but our pediatrician said he’d do it and since I was convinced that was her diagnosis I knew I just needed someone to sign off on the paperwork with an MD at the end of their name, I never thought about her.
Then the test came back negative and I quit for awhile searching. That was back in 2006.
It was 2008, before we got the call about the positive re-test, I had gotten an email from a CDKL5 mom who said she just knew Lily had CDKL5. I then started looking back into it and decided to call the geneticist and see if we can test Lily again for CDKL5. I looked at the data on CDKL5 and if Lily didn’t fit every single symptom then I don’t know who did. So I call, get Lily scheduled for months out and a month later we get a call from the pediatrician who says Lily was re-tested and she tested positive. We hadn’t even been to see geneticist yet! Man, this is a long story. I keep our appointment and we saw her last Dec (08) and we have been following up every six months since. She has diagnosed one other child with it so far here in the Phoenix area. She is incredibly smart (obviously) but also has amazing bedside manner, she is a mom herself and is very caring. She went over Lily’s whole body, she asked me questions, wants to do an upper GI next appointment to make sure Lily doesn’t have reflux. She asked for a copy of Lily’s EKG and wanted to make sure she has no arrhythmias. I guess Rett girls can have that problem? She asked me about her breathing, wants to follow closely with her scoliosis. She understood my needing a second opinion on the bracing and said that she is still young, but we will watch her closely. She asked me what she could do for me and made sure I am taking care of myself. I have never had a Dr. ask me if I am taking care of myself. It is so obvious she is a mom.
Anyway although the appointment was long and probably stressful for my mom who was trying to entertain an 11 month old and keep a very loud 4 year old quiet, it was a great appointment.
Lily has a runny nose yet again and I don’t know if it is a cold or she is having a reoccurring sinus infection, I think I better take her into the Dr. to see if she needs antibiotics. Oliver has a follow up on his ears tomorrow so I will just bring her in for a two for one again.
Andi Jane is doing great, full of her usual spirit and happy. Oliver is almost one and walking all over. We are having a barnyard party for him with a petting zoo here next Saturday. Should be fun, except that I am not happy he is becoming a toddler. How did he grow so fast? My mom said yesterday, he is going to have a temper, and I said going? He already does. Here comes the fun times!

Blog at WordPress.com.