Calm Amongst the Chaos

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Kim Nothdurft

October 20, 2008

I know it is wrong to play favorites, but I have one. My favorite blog on this planet is from this sweet young woman who is going to make some kids the luckiest on this planet because she is their pediatrician. 6yearmed. Or some really lucky parents to get to have their most precious charms being looked after by some one like her. I linked to this recent post she made that I can’t manage to read and re read without just loosing it. Please read the link before continuing.

I don’t know if is it the way she describes mom’s tired eyes. Because so many of us know those tired eyes. The eyes that spent way too many days looking at monitors. Looking at their child in a hospital gown. Spend too many hours looking at the clock. Eyes that cried more tears than they ever felt humanly possible. Eyes that were beyond a shadow of a doubt, exhausted.
Or is it the way she describes the way that the mom smelt her daughter head, her sweet, sweet bald head and maybe was remembering that smell she was born with. I know there is nothing like the smell of your child’s head when they are freshly brand new in your arms. But when you are a mom you can’t help but love to smell those heads years later, fresh out of a bath, or fresh with sweat after playing all day in the sun. Smelling and kissing heads is something us parents do over and over again and when I read that part I just have so much hurt. So much compassion for this mom kissing this sweet bald head.
Having a special needs child puts you in a different world. A different place to parent from. You see things from a different perspective and it seems like with a lot more compassion. Yet I still don’t know what it is like to have a terminally ill child. To have a child that once was healthy and then became sick. Lily came as is. In my dreams before she was born she was something she is not, but she came here showed me all that she was about in less than a month and said take me or leave me. And I was on board. She is and will always be my angel girl and maybe down the road her condition may change, she may not be as healthy as she is today, but right now Lily is healthy. She is happy and she is my girl. I can’t imagine her not being healthy. Not knowing if she will survive the night. Those are fears that overwhelm me and are incomprehensible so when I read that post about that mom and daughter. A mother daughter relationship that I know so well with a “neuro typical” daughter and my “special” one, to see it so open. So tender and so frightening. It just captures the entire “me” and I am sure the entire “yous”.
Thanks Danielle for bringing such a tender heart to such an amazing profession.

And I know my web would read: BLESSED

Adios!!

Kim Nothdurft

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October 17, 2008

I made plans with a dear group of friends that I get to see only a few times a year now. Our special kiddos all went to the best preschool on earth together and we used to have weekly meetings where we’d talk, laugh and cry together. It is a very special thing in your life when you can find others who can relate to you on issues that no one else can. I mean I have great friends whom I love, but most of them can’t comprehend changing their 6 year olds diaper. Or having to spoon feed their every meal. Or manage seizures. This group can. Included is the kiddos teacher and therapist whom know our kids and worked with our kids and love our kids. We used to meet weekly when our kids were in prek, but now we have all moved on to the scary world of public elementary and have all gone into different districts our meetings have gone away.
So every 6 months or so we try to get together for something called game night. One mom always hosts in her gorgeous home and we stay up late, we laugh and play games. It is the most fun I have ever had sober. Not the most, but it really is good clean fun that is just can’t be beat. Anyway, we have had tomorrow night planned for several weeks now so when Andrew says I’d really like to go to Greer this weekend, I said “hold up!” I said “you will not go unless you have child care planned for me”. I am not missing game night and I am not going to scramble to find a sitter to come to our house because he got a bug up his butt. Well guess what! My mom said “well how about I go up too and Andrew brings the girls”. I said “really??” Holy crap! What ever will I do? No husband, no kids for 2 days? Sign me up! So that is what is happening. Let me just add, Andrew normally is fully capable of taking the kids himself, but he is going up to help my dad work on the house and this isn’t hanging up pictures housework, this is laying flooring, putting wood on the ceilings, painting, hard house work. So my mom is going to help with the kids and Andrew will help my dad. It really is an awesome thing to be happening….. to me! And of course the kids, they love it up there. I do too and want to go, but game night is happening and I AM GOING!

Bye Bye Bye

Kim Nothdurft

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October 8, 2008

So Monday was our last appointment. Sigh. It was a long one. Thank God my mom went to hang out with us. It was a long one. I first spent 2 hours getting pee from Lily Sunday night. 2 hours! I was an hour late to a family dinner at my sisters waiting for that child to pee. I have tried those things you stick on her, but every time I try she manages to pee everywhere but in the bag, the only sure way to get a sample is to sit her on the potty. I loaded her up on drinks, but since she only likes to pee in fresh diapers it was a long 2 hours.
But we got it. Andi slept over at my sisters Sunday night so that was nice not having to bring her along because I am not kidding we were there from 9am to noon. We sat with the nurse for 30 minutes, then saw the neuro for 15 minutes. He was funny. He just says what he thinks. Anyway, he wrote scripts for Clobazm (sp?) and Vigabitrine and our favorite pharmacy in Canada is able and willing to fill them both so that is the easiest route for us to go. The Keppra wean didn’t go as planned. Apparently Keppra was preventing these myoclonic cluster creepy seizure so she is back up on that. On Topamax and Vigabitrine then we are supposed to add Clobazm, but neuro doesn’t want her on that many just as I don’t and we will go from there to see which one to wean. Sucks. I didn’t realize Keppra was really helping. At least it is the one with the least side effects. I’d like to get her off Topamax if at all possible. It has been so long, I am not sure all it does. When we tried to wean it last time it wasn’t an awesome thing, but that is because she was a mess anyway off Vigabitrine. So we should try again. I am just thinking out loud. For those of you with kids minus seizures I am sure none of this makes sense, but for those of you who do deal with those nasty monsters I am sure you understand the constant clutter in the brain of the best option, stop seizures but don’t totally fog the brain. I hate seizures.
So anyway, after visiting RN and DR we had to go to the hospital for an EKG. We had to wait for what seemed forever to register her, then up to wait for the test. Then the test, then down to labs to give them the golden pee and to have her stuck twice for blood. Then I hugged the sweet RN goodbye, whom I got to know real well these past months, and we said SEE YA!
We went to visit my aunt who had neck surgery as well after all that, then to eat in the crowded cafeteria. Oh and I thought it was just on Grey’s Anatomy that you see people on the elevator. Nope not the case. Lily’s neuro got on the elevator with us and took it down. It was weird since we weren’t in his office. Lily made herself known by happy screaming and we all laughed at her. Gotta love Lily knowing how to save an awkward situation.
That child loves to scream. She was happy screaming from 6am to 7am this morning. I was not ready to get up so we just let her yell and let us know she was up. She never cried, it was just hey I’m up, get me out. She is so silly.
Everyone who sees her lately says this “Wow! I never see her so alert and active!” Yeah, that is what not seizing all day does to her.
Otherwise on the home front, Lily doesn’t go back to school until next Wed. Fall break is long! She is home with her nurse today and Friday. Thursday we will take Andi to gymnastics and that is the highlight of Andi’s week. Plus her awesome gymnast cousin Skylar is out this week too and will go watch her tomorrow. Andi is so stoked! She loves her cousins!
My pregnancy is going well. I am really showing now! 22 weeks and counting. I can’t imagine how big I will be in 18 more weeks. Andi says “you’re as big as Jody so it is time to have the baby” my cousin Jody had her baby in July and I kept telling Andi I have to be as big as Jody before I have the baby and she thinks I am already there. Silly girl! Maybe I am as big as she was in July.. sigh.
Heartburn really kicked in last night for the first time. I had it much earlier with the girls and had hoped I was immune with this boy, but no such luck. Woke me right up and I had to take a zantac and sit upright for almost an hour last night before I could go back to sleep. Sigh. I hate heartburn! And neither of my girls had hair so that old wives tail sucks. I guess my Mexican food obsession will have to subside if I want to sleep these next 18 weeks.
Andi is good and as silly as always. Rarely naps and is always full of energy. She is so funny and keeps us all entertained daily.
So that was a long huge update. At least it is a good one!
If you are in need of a tax write off think about supporting our Zoo Walk for Autism Research I have a Paypal button at the top of the page. It is a fabulous cause and a day at the zoo with my girls supporting such a close to home cause really sounds like a great day to me.

My girl

Kim Nothdurft

3 comments

October 3, 2008

My girl is still doing great! We have to go in on Monday for a “final” appointment for the study. 🙂
It is a long one though, EKG, Blood work and I have to bring in a dang urine sample. Don’t get me started on those. Looks like we’ll be on the potty for an hour Sunday night waiting for Lily to tinkle. Oh well. I am giving them the meds and in return I get an rx for the same med that we will now have to pay for. That is still if I decide to fill it. We are weaning Keppra and should be off by next week. (this is supervised by neuro) and she is still on Topamax but that may be the next to get the axe. We’ll see. I think Vigabitrine works on it’s own and if we do decide to fill the Clobazam then we will certainly give Topamax the axe. No mas three drugs for my girl.
I love her bright eyes we are seeing again. I love her smiles and filling her tummy with her favorite treats. She melts my heart.
Home to see her right now. Happy weekend.

First do no harm

Kim Nothdurft

4 comments

October 1, 2008

So Lily is on modified year round school schedule. That means for every nine weeks they have 2 weeks off. Only two weeks is more like two and a half weeks plus two half days. Which in more clearer terms, really hard for someone who tries to work a few days a week. Since I am still living in a home with no computer plugged into the wall, long story and I am sure it will be a long time before that changes, I can only update when I am at work and until she is back in school I can only work two days a week, that is all the nursing hours I am allowed (15 a week), so updates will be less frequent for some time. How was that for a run on sentence? Grade away teachers!
So here is the update. Lily is doing absolutely fabulous! Hip Hip Hooray! She started a small dose of Vigabitrine/Sabril on Thursday night. Not much change on Friday. Then Sat. she had one seizure in the AM and I decided to bump up her dose to 250 mg 3x a day instead of 2x a day and Saturday afternoon she had a drop that just a day ago would have turned into a full blown GM seizure, but praise God it just stopped at the drop. I think her and I were both shocked and since we were at a party and not going to make a scene I whispered in my girls ear, “it’s over baby girl. They are gone”. I just knew it. I knew it 10 months ago. I knew it. I knew we should have never made that change. Now I can sit and kick myself in the butt over and over again, or I can say we tried something. We listened to the Dr. for the last time and we know, I knew this but now I KNOW that mom’s gut trumps everything else. Trumps dad’s gut (sorry hunny, I still love you) it for sure trumps Dr.’s ideas. Not that I will not listen, I will listen. I will take when I hear into consideration, but in the end the choice will be mine and it will be made after soul searching.
I was put on this earth to raise this child and I will not do that job poorly. Just because someone went to school for what 8 years plus all those years in training, that will never compare to being a child’s mom who lives with that child on a daily basis. Again I am not discounting our Neuro. We still love him and will continue to see him. But no more will I jump aboard his crazy ideas. That study was only beneficial to one side and they can guinea pig on whomever they want, it just will never be my child again. I wish I had laid down the law months ago, I wish I wasn’t so easily talked out of my gut opinion, but this was a learning experience and that is what life is made of. Rarely do you learn anything from pleasantries. We learn from hard. We learn from scary. We learn from frustration. I have learned a huge lesson. We will move forward. I have a call in about weaning Keppra since Lily was having up to 4 GM’s a day during her wean from the study drug so we know that drug does nada for her. Since I haven’t had a call back yet, I am doing it on my own. I still would like to get the study drug in a small dose to help with her drops, it is as easy as writing us a rx and sending it to a pharmacy in Canada, just like Vigabitrine. Something he could have done oh let’s say 10 months ago, but really wanted a guinea pig instead… hummm don’t doctors vow some little phrase?? What is it? Oh yeah “First do no harm.” But anyway I haven’t decided either way yet. Lily’s posture is better off the drug. Lily’s appetite is hugely back to normal. I can’t find my little camera with the video recorder on it, but Lily is so funny right now. I was giving her those little Dryer Dibbs (yummy!) and I just held it in front of her mouth but not close enough to just put it in. She opens up and leans, I pull back and she leans forward more until she snatches it out of my hand. So there, vision problem? Not when there is ice cream involved. I will try to find that camera, but it may be a lost cause. I am afraid little sister has something to do with it.
So that is our update. I will be back on Friday to post again before I go on another hiatus.
Thanks for your prayers and concerns.

Change is hard

Kim Nothdurft

3 comments

September 17, 2008

Changes are in the air. Is it because it has been awhile in the waiting? No that can’t be it. Is it fall? Who knows.
I still haven’t gotten a plan for Lily’s wean and add of the Vigibitrine so I put a call in the AM and it was much cheerier than my last, lets hope we will have a plan come tonight. She has had one a day since Monday, and I think ok maybe we can just deal with the one a day, but then I see the seizure and it is big. It is hard. It is intense. I see Lily’s three year old sister holding her hand and telling her it is ok and that she loves her and I get mad. That is not how life is supposed to be! And even if it is one a day, it is one too many. I see how wiped out my baby girl is and it is not fair.
This morning our stupid puppy ran out and just went crazy, I couldn’t get her back in, then when the bus pulled up I had to run and bring Lily out and while I am chasing the puppy, Lily goes into a seizure right there in the driveway. I forget the puppy and talk to her, Andi rubs her and when it is finally over she is spacey and tired and I have to put her on a school bus. It just breaks my heart. Then I can’t get the dog to come to me and I just start crying. I know I am pregnant and I even cry watching The Hills, but it was too much. I swear if I had a pound near by I would have taken that dog, dropped her off and never looked back. I had never been so frustrated and overwhelmed.
I know Lily just slept the ride to school and she will be fine once she is there, but I can’t, she can’t, we can’t have her go thru this anymore. I am so done.

Back to my point of changes. A few weeks ago I did some calling around looking to change from Lily’s center based therapies (I take her to OT and ST) to in home therapy. I have been taking Lily to 4 therapies all outside of the house on Mondays and I am getting bigger and soon I will have an infant along with Lily and Andi and I just won’t be able to keep up. Well God must have thought that was a good idea as well and opened the doors to not only an OT but a Speech Therapist that are able to come to our home, on the day I already have Lily out of school! Some people are on waiting lists for years! I did not think this would have happened so easily and I know this has God written all over it. But because these openings are open they start next week, so I had to let go of our OT and ST whom we all love and have been seeing for over 2 years. I had to call each of them today and apologize for this quick change. I know each kid they see puts food on their tables and I don’t take that lightly. I wanted them to have a good heads up to be able to find someone to fill Lily’s spot, but for my sake I had to take an opportunity that I know rarely happens. So anyway, I am sad to let them go. I am happy to have just made my life so much more simple. It is change. Change is scary. Change brings butterflies. Change, well is just that, it changes everything. But change can be good. This change is good.
Please keep us all in your prayers as we make this transition and as we make some med changes, I am praying that my gut is not wrong.

And maybe that someone steals our dog and gives her a good home.

And I finally did it!

Kim Nothdurft

1 comment

September 16, 2008

After Lily having two to three grand mals this weekend (each day) after we upped her meds so much that she can barely stay awake. I called her neuro Monday AM and had to leave a message, Andrew said it was mean, but I didn’t think so.
I got a call back with an apology and a promise that we can be off this study.
We gave it 9 months! 9! She had no grand mals when we decided to start this thing. Now she is having them and often. I’m done. I said I want her back on Vigabitrine, I know he doesn’t think it is a cure all, but considering all we went thru before we tried it and then when we put her on it although it took some tweaking, her grand mals stopped. So I have to try it again and try it for good. Get her back to a high dose and go from there. She will have to be weaned off the study drug that has helped with her drops, but like I have said a million times, I take drops over grand mals any day! I know Lily agrees with me on that. So we just have to get the go ahead as to how we start the wean and start adding Vigabitrine. I know we have to go slow and I know there are side effects to Vigabitrine, but I know that grand mals are the worst thing to deal with and I have to see that they are stopped. Enough is enough.
Sigh.

Strange kid.

Kim Nothdurft

1 comment

September 12, 2008

Lily had a neuro apt. on Monday and we upped the study drug and Keppra b/c she had been having anywhere from 3 to 4 grand mals a day and I was so frustrated when I came in.
So far this combo is keeping her just having one a day, but it is totally unpredictable and when it comes it is hard and wipes her out. Her drops are all but gone, but she is really tired on this very similar to Klonopin drug. I hate her napping all day. She went to bed last night at 6:30pm. And that wasn’t following a seizure. She is just wiped out. So let’s see wiped out from meds or from seizures. Isn’t life so fair. I know I was told life isn’t fair at a young age, but this is a little ridiculous.
Tuesday night Lily came down with a fever and by Wednesday AM it was over 103! No symptoms, no pain except for the uncomfortableness from a fever. I had to work and her nurse couldn’t come early so I had to take her to work with me. But by 1pm her fever was gone, after Motrin, and never came back. Strange child. She just wanted to make things complicated and make her mom worry.
Tomorrow we are going to a party that one of the therapy companies is throwing. It should be pretty fun. I like free fun for the kids. 🙂
Have a nice weekend!

Oh I totally forgot to share, we are for sure, most indeed having a boy! There was no hiding his pride and joy. We even got the enjoyment to watch him play with his “toy”!

Lily’s Birthday Post … finally

Kim Nothdurft

7 comments

September 3, 2008

August 28th 2002

Welcome to the world Princess LilyAnna Blu! Only after 29 hours of labor your beautiful little self came into the world, pink and crying. We had no idea what you had in store for us.

Only a few weeks later we found ourselves back into the hospital doing test on my baby girl that I had only heard of on Medical shows

And that first year was more of the same

2 months
7 months
Even though your first few years we spent aggressively searching for a diagnosis and a way to tame your uncontainable seizures, we still had fun!

First birthday Lily had Keto Cake!

At 11 months you were diagnosed with Infantile Spasms and at 13 months we treated you with what I think was one of the worst things we had to do to you. We gave you shots every day of the steroid ACTH. This picture explains how you felt and how your mommy and daddy felt. Grumpy!

But we still did fun things and tried to make your quality of life the best we could!

Trips to San Diego!

And Daddy setting up your red riding wagon just for you, and of course cute clothes!

Your second birthday in our new house was fun!

Your second year was very eventful. You were a flower girl! That was fun.

But your uncontrollable seizures had us in a tailspin. We took you to a specialist in San Diego and he ran lots of tests on you.

And the most heartbreaking decision we ever had to make, and one mommy is still unsure was the best thing for you and something we wish had never had to happen. You had to have brain surgery on Jan. 31st 2005. (unfortunately unsuccessful)

I cry still thinking about all you have had to go thru in your little life.

After San Diego and the surgery Mommy and Daddy decided to lay low on or diagnosis search and to accept seizures as a part of your life.

On March 17th 2005 you became the best big sister ever!

Then you turned 3 a few months later and as a strange turn of events, we finally found a great medication combo that helped control your seizures. Although never seizure free, life got much easier.

Then preschool at the best preschool ever! The Foundation for Blind Children! The bus came to our house and picked you up!!

You had the best teacher for two years and made some really good friends there (as well as did Mommy!)

You finished your first school year showing off your skills!

Here you are on your 4th birthday

And Easter that year

Disney World was a blast!!

You graduated from FBC in May 2007 and that was a little sad for all of us.

You had another Video EEG after a couple years

You started Kindergarten before you were even 5!

Your 5th birthday was fun at Peter Piper Pizza!

In October 2007 we went to San Diego with family friends and had a great time! You rode this roller coaster 3 times and kept asking for more!

Gorgeous girl!

This past year you started Hippo therapy, kept up with all your other therapies (OT, Speech, PT and Music), finished Kindergarten, started 1st grade and just had a super fun birthday party at Grandma Nancy’s with all your friends and family and you celebrated your actual birthday with cupcakes in your class.

Even though nothing has been easy for you, you still try. You still smile and you still warm my entire soul with your just being you. I love you more than I could ever say with simple words. You are my first born beautiful daughter who made me the woman who I am today and I will forever be indebted to you and if I could ever teach you an eight of what you have taught me I can die a happy woman.

I love you my LilyAnna Blu! You and I are one heck of a team!

"I don’t need another sister"

Kim Nothdurft

5 comments

September 2, 2008

I was going to post about how frustrated I was with Lily’s awful seizure filled weekend, but then last night this happened and I’d rather share this.
Andi asked if Lily could lay in her bed with her. We were in a sticky situation, we are dying for Andi to want to “play” with Lily, but Andi’s bed has no rails and Lily could roll right off it. We decided to make a safe place for Lily on the bed and told Andi that she has to yell for us for any reason. That she has to be in charge with Lily in her room. She said she would.
We lie them both down, they are sharing a pillow and watching cartoons. Andrew and I were checking in on them every 5-10 minutes and all was well. Then all of a sudden we hear “MOM!” “MOM!” so I go running into Andi’s room and Andi says “she’s having a seizure!”. So we comfort Lily during it and I thank Andi for being such a responsible sister and she says to me “mom, I don’t want another sister. I love my sister. I know she can’t walk, but that is ok. I love her.”
I can honestly tell you that my heart melted and ran all though my body. My eyes welled up and I said again “thank you Andi for being such a great sister.” Now this child can fight with me at times and act like she is sent to this planet to drive me nuts, but knowing that her heart is like that, none of that other stuff matters. She is a responsible 3 year old that I know will be a compassionate and wonderful, not to mention strong willed, woman.
I love being my kids mom.