Calm Amongst the Chaos

Where have I been?

Kim Nothdurft

May 28, 2011

Crap! I am so behind! Yesterday it dawned on me that I have a blog and when was the last time I wrote on it? So not like me to be so darn behind. The funny thing is there is a post in my head that I want to write. I go over it and over it. But never sit down to really get after it. Last Saturday Andrew and I renewed our vows and I want to share why. What happened between last May and this May. I want to share pictures. But I really need to share an update on Lily. The reason this blog exists.
So let’s back up a bit. Surgery site is completely healed. She is totally back to normal. We turned it on last Thursday, but the setting is so low we aren’t seeing too much change. Now every 2 weeks we will be driving our happy butts to Phoenix to slowly bump it up. All three kids. In the summer. In Arizona. In a van with sucky air conditioning. Anything for seizure control.
She had a sleep study, I think it was two weeks ago? Andrew took her. He said it was like staying to the Ritz! They called with the results and said she is experiencing sleep apnea and now we are referred to a pulminologist. I am not sure what the next step is, a mask? Ugh. We knew she was doing this so it is a nice confirmation, but still sucks. We see a cardio on the 10th. It’s like all these new Dr’s that we are not used to. I was happy with just the Nuero, Geneticist, and Eye Dr. Now we add two more? And on the heels of being given a new neuro.
I didn’t call around for summer schools in time because I wasn’t sure I trusted any of them since she stopped being able to attend Foundation for Blind Children, then I got one recommended, called and it was too late. So I am afraid it is going to be a boring summer for Lily. I am working 3 days a week now and she she’ll be home with respite when I am working. But they won’t be able to do much at all. No walks in 115 degree weather. No outside play. So pretty bummed about that. We’ll have to think of some fun things for her to do inside. Maybe whipped cream play. Sensory buckets. I think the other 2 will go to Oli’s sitter for 2 days. I’m not sure exactly how it is all going to work out. Child care during the summer will cost almost as much as I get paid.
Wow ok. Done complaining. Holy crap. No wonder I haven’t posted much. Negative Sally here.
I love working now, but last year was easier being home all summer with the kids. Well… easy??? Ehh… but I felt better being the one doing things with them. Now it is going to be a whole lot different. Darn it why didn’t I become a teacher?
Anyway. Working on my post about our renewal. Pictures included so check back. I promise I won’t be away so long!
PS I am in charge of IFCR’s newsletter and I have been working on that as well, so I am a busy little bee. Not just sitting in a corner whining all day long which is apparently what it looks like I do.

Surgery Update

Kim Nothdurft

7 comments

May 16, 2011

Lil Bill is back to normal! She is rolling around and seems to be feeling well. Poops still aren’t quite on track, but we’re getting there. She has though been waking, oh did I say waking, I mean SCREAMING bloody murder every moring at 5:30am on the dot. We go in her room and nothing seems to be wrong. So we aren’t sure what is up with that. Not gonna lie, it kinda sucks. For all parties involved.
But she is back to rolling over and that means it must not be so tender anymore. She went to school today, but after getting Andi’s opinion we decided to put a band aid on her neck incision. Although it is healing, it does look “a little bit yuck” as I was told. And I was also informed that Andi doesn’t like people staring so we should just put a lightening mcqueen band aid on her neck. What in the world would I ever do with out my Andi Jane? My total surprise, did not want a baby at that time, Andi Jane.
Andrew was out of town this weekend and I had some issues with the word no and Andi. We really got into it Friday night and I didn’t contol my temper (I hate when I let it get the best of me) I was so tired and the day was nothing but driving all around the state for Lily’s dr apt and for work. It was just a “too much” day and it ended with us fighting and Andi told me she was going to move out and take Lily and Elmer with her. (Elmer the guinea pig) I was still mad at her, but it did soften my heart that Lily was coming with her. And a little sad she didn’t want to take Oli. I almost had a great deal.
Anyway, we both apologized to each other and the rest of the weekend was so nice. Just hanging out at home, swimming, church. It ended with our small group meeting at our home and it was such an amazing time. So refreshing. So awesome. I just never understand questioning God when he makes himself so present. So so present.
So that’s our update! All is well in the land of Nordy’s. We’ve had some huge struggles, but we are moving forward and better for it.
Oh I also wanted to share Oli’s end of the 5th week in ISR … he is just doing amazing! He will graduate this week! So worth every penny. Watch for yourself. He is 2 years 3 months old!

Paging Bestie

Kim Nothdurft

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May 14, 2011

My friend Kim is amazing. Like hands down the best friend a girl can have. Will do anything she can for me, loyal as all hell and the funniest person I know.
So when she was 15 minutes from picking me up I texted her to see if she would stop at Walgreens and grab an enema for Lily. I had been giving her stool softeners to no end and nothing so we knew we needed to up the ante post surgery. I would like to share how the texting went, this of course is all with her permission. Right Kim?
Not editing, I do spell this bad.

Me: u know i hate to ask u this but is there anyway u can grab some enemas on the way? lily’s really having a tough time. i’ll $$ u back
Kim: shut it!!! i would love to! plain?
Me: no mint. lol i think plain
Kim: cool 🙂
Me: u need a bff cape today
Kim: hush! i love to help

She sounds like the bestest friend on the planet right? So willing to help. So loving 🙂
So when Kim shows up and in her hand is a big bag of plain m&m’s we laughed and laughed and laughed. Like she will never live it down. It was awesome! She is pregnant and that baby girl calls all the shots and apparently those shots are filled with sugar.
She even went back to her phone to prove I for some reason wrote eminems …. but I didn’t. Not sure why I would, lol. Oh it was so funny. I asked did you really think we were in dire need of m&m’s… ahhhh it was so funny. I still laugh thinking about it. And the whole plain, no mint. I thought she was being a smart butt and she thought I was …. well… what did you think Kim? Oh man that was awesome.
The next morning Andrew held his tummy and said boy those m&m’s worked.

Love you Kim!

Tomorrow is surgery

Kim Nothdurft

1 comment

May 9, 2011

Today was a wonderful day filled with cards, gift cards for pampering, great family time at my parents home… picking up Oli’s poop off Andi’s carpet…. you know typical Mother’s Day.
At the end of the night we had to say good-bye to Andi and Oliver who were sleeping at my parents, it was the best alternative since we have to be at the hospital by 6:30am tomorrow. My mom will be taking Oli to swim and Andi to school. But when Andi hugged Lily she started getting really emotional. She is so beyond her years. She has such a tender heart. I’m sure she was fine when we left but she always has a way of tugging my heart strings. At least she lost yet another tooth so anxiously waiting the tooth fairy will be a great deterrent. I just hope my mom… errrr I mean the tooth fairy remembers tonight 😉
Andrew and I were joking tonight after Lily got a massage, teeth brushed, toes and fingers clipped… “man can you imagine if Lily was our only kid? She’d be sparkling all the time” lol… I’m sure all parents think like this, right? I hope all those only kids out there are sparkling 🙂
We will update tomorrow when we get home.
Prayers please.

Ugh

Kim Nothdurft

1 comment

May 4, 2011

We got bumped! Surgery will now be Monday. I gotta be honest, I was bugged by this. I got this phone call AFTER I got the phone call saying our Neuro is moving to Oklahoma on May 25th(!?) and I got that call AFTER finding out we never should have done business with a friend. (I won’t go into detail, but I know many have been there done that). The truth is a child was admitted to the ER and needs surgery today, hence the bump. Everything in me knows to have compassion for the child and family. I never want to think my child should be before any other. I know we went through a lot to make sure all the kids are figured out, but I also know my parents live down the road and are always willing to help (until those darn snowbirds leave all summer :)) and we’ll have it all figured out next week. The appointment to turn it on stayed the same so the end result is not delayed. It was just a snowball of crap day. But we’re fine. I’m fine. Now she is first of the day and won’t be starving waiting all day for surgery. And now the little 2 get to sleep over at grandma and grandpa’s Sunday night and I know how they are excited about that.
Knowing that God is the ultimate planner, I know to trust the schedule he designed. But I am allowed to gripe a bit right?
The good news is I am still taking the day off today!

UPDATE

Kim Nothdurft

4 comments

May 1, 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!
Amen!!!
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

Kim Nothdurft

no comments

April 30, 2011

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”
Silence.
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.

FINALLY

Kim Nothdurft

no comments

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.

My favorite?

Kim Nothdurft

no comments

April 25, 2011

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.

Perspective

Kim Nothdurft

4 comments

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.
Perspective.

“We don’t see things as they are, we see them as we are.”
Anaïs Nin (1903 – 1977)