Hope Writes Its Own Story

I don't deserve readers!

Fri, 03 Feb 2012 18:30:00 +0000

Thanks for hanging in there with us. A number of blogs I follow do something every Friday called 7 Quick Takes and I'm going to give that a try! None of it may interest you and that's okay. :)

1. Simon has a stomach bug resulting in vomiting. Last week it was diarrhea. Poor little guy needs to kick this mess!

2. My aunt and cousins are holding their 5th annual Roman Barten Memorial Benefit Breakfast on March 18th in New Prague, MN.

HOW CAN YOU HELP?

-Pray for Ashley, the Kes family and for the success of this breakfast.

-Join us on Sunday, March 18 from 8 a.m. to 1 p.m. at the New Prague KC Hall.

-Spread the word! Tell as many people as possible about the breakfast and/or donation opportunities.

-Volunteer – email romanbartenbreakfast@gmail.com if you would like to volunteer.

-If you cannot attend, monetary donations will be gratefully accepted (all donations are anonymous). Donations can be made out to “Ashley Kes Benefit Fund” and sent to Frandsen Bank & Trust, PO Box 200, Lonsdale, MN 55046 or sent to any Frandsen Bank & Trust.

Roman Barten lived for his 11 children and taught by example to reach out to others. Roman died in 2006 from a cancerous brain tumor. Since then, the Barten family has continued his legacy of service to the community by hosting a pancake and sausage breakfast to benefit a family/child in need of prayers and financial support.

3. Although this winter hasn't been too bad snow and cold wise, I'm getting the itch for spring. No spring break for us this year :( I am longing no, LONGING for a walk on the beach.

4. Are you on Pinterest? Does it suck your time as much as Facebook does? Yeah, me too.

5. My husband deserves a reward. Between Simon's illness, Maddy's stomach bug, and Natalie's lice (there, I said it--I haven't wanted to share that piece of news) he's had someone home with him for almost 2 weeks straight. Lice is worse than potty-training, and I thought THAT was bad.

6. Jim and I are both getting Invisalign to straighten out our teeth.

7. Did I share Simon's adorable school picture with you yet??

Have a great weekend!

Bottlecap Jewelry

Tue, 25 Oct 2011 19:30:00 +0000

I just wanted to show of the cute items I had made with Simon's picture on them. Every item is totally customizable! AND very very reasonable. I got a bracelet and some zipper pulls. Give her an image and she can do it (She does not guarantee all photos will work.)

http://www.brooklynsbottlecapjewelrydesigns.com/

https://www.facebook.com/home.php#!/BrooklynsBottlecapJewelryDesigns?sk=info

Yippee!

Sat, 22 Oct 2011 04:30:00 +0000

Simon has been doing SO well lately. He's totally off the morning Tranxene, and I think that is part of the reason. He's eating great, and not nearly as sleepy. He's stronger again. He's smiley and giggly.

I'm so happy! :) Little cutie-bug.

Wanted to let you know, we'll be celebrating PKS Awareness Day again on December 4. We have t-shirts available for whomever wants to buy one. If you'd like a shirt or want to sell some, they are $15.00 each. Pictured below! Please email me if you're interested.

Simon update :)

Tue, 27 Sep 2011 13:20:00 +0000

So, I'm very lax about letting you know how Si-guy is. He's doing much better. He really is acting a lot more cheerful, interactive, smiley and the seizures are somewhat diminished. He still has them, especially in the morning, but throughout they day everything improves. His eating gets better, he's more alert, etc.

We are still tweaking meds and we've lowered the Tranxene by one full tablet in the mornings. I'm slowly seeing a bit more alertness throughout the morning, but he's still throwing in one big, long nap.

I think I'm getting my little guy back and that makes me happy. Let's pray that the seizures don't worsen as we slide off the meds.

Oh, and please invoke Venerable Father Solanus Casey when praying for Simon!

God bless :)

Seizure summary and update

Thu, 08 Sep 2011 23:00:00 +0000

As you know, Simon's seizures have been a real source of stress this summer. He was having myoclonic jerks again, staring spells,eye twitchy things and hand wringing. School was noting 20 or 30 in just a few hours! We were able to have another 24 hour eeg and it was very helpful. We found out that the only thing that are seizures are the myoclonic jerks. He did have several staring/zoning out episodes and they weren't seizures. He had been drooling much more, sleeping more, not eating well or as much, was more tired and lethargic and not doing as much.

He was on the following meds:

8 ml Keppra 2x day

110 mg Lamictal 2x day

100 mg Topamax 2x day

.0125 Clonapin 1x day

5.625 mg Tranxene 2x day

The neuro thought perhaps some of the meds were causing the bad behavior (sleepy, zoning, etc) so we're going to fiddle a bit. We backed off some of the Tranxene, giving 3.75 in the morning and increased the Clonapin to .25 in the morning. We're hoping the clonapin will ward off some of the jerks,and it does seem like its working!

We check in with neuro again tomorrow or Monday to see if we'll make some further changes. But today, he didn't sleep as long at school AND he was able to stand at school AND at home! He stood well yesterday at home for the first time in months and that he could do well twice is great. PLUS, he's been eating better. He's improved with everything every day this week, so I really pray we're on an upswing!

EEG Results

Tue, 23 Aug 2011 15:40:00 +0000

Very good news coming out of the EEG. Well, relatively speaking :) Which is what we get as parents of this special boy.

Simon is having myoclonic jerks again. Sometimes they cluster (as they did Friday morning during the EEG for almost 90 minutes). Myoclonic jerks are the least innocuous of seizures. (Is that an oxymoron?) Anyhow, all the other episodes--silence, staring, hand in mouth episodes are NOT seizures! Thank you God! These type were more frequent and longer, so we're so glad they aren't seizures! Now, why he's doing it, we don't know. Could be the meds, could be Simon.

So we have clearer orders to give the school now for treatment. In a week we may be weaning off one of the meds and increasing another, and if that works, we may be able to back off the Topamax, which could be part of the sleepiness and extra drooling. (Lovely, huh?)

Soooo, it was well worth going and sleeping on the "park bench" in the room. In December, ALL PRIVATE ROOMS! Will be so happy for that!

Thanks for all the prayers. They work and they really buoy me up as well.

Gretchen

What I would tell you....

Sat, 20 Aug 2011 13:00:00 +0000

What I Would Tell You…….

I sensed someone watching me as I comforted my daughter after a particularly traumatizing dentist appointment at the Children’s Hospital. I looked up and saw you staring at us from across the waiting lounge. I didn’t pay much attention, as I have grown accustomed to the curious eyes of onlookers. Our daughter was born 7 ½ years ago and after an abrupt lack of oxygen at birth, she changed the course of our lives forever. Perhaps, our lives unfolded exactly as they were meant to— they just didn’t unfold in the way we had imagined or planned.

I talked to my daughter, kissed her and hugged her. I was giving her a brief break before putting her through the next traumatic experience of the day~ the car ride home. Having cerebral palsy is the least of her worries but this condition can turn a car seat into a torture chamber.

I stood up to gather our things, my daughter in my arms, and it was then that I noticed you were holding an infant. It was difficult to know for certain how old she was. I knew immediately, though, that you were one of us. I knew that only recently your life had changed drastically and you sat here in this Children’s Hospital wondering, “How did we get here?” I should have recognized that shocked stare because I once had it, too. And I assume that the man sitting next to you, looking equally tired and shocked, was your husband.

I made my way toward the doors and as I passed you, our eyes met and I smiled at you. You smiled back and for a moment I knew that you knew that I understood.

If I could, I would tell you although you might not believe it right now, you will be okay. I would tell you to dig deep within yourself because you will find the strength and resilience somehow and it will surprise you. I would tell you to honour your feelings and let the tears flow when they need to. You will need the energy for more important things than holding in emotions.

I would tell you that the man sitting next to you might cope differently and he might even want to run the other way. But I would tell you to hang on because he is scared and he really doesn’t want to leave you. I would tell you to look after yourself so that you can care for your daughter. Don’t underestimate the power of good nutrition, exercise, sleep, supplements and an empathetic therapist.

I would tell you that grief will come and it will confuse you because how can something that brings such joy also bring such sadness? I would tell you to let people into your lives to help you. Our children really do require a village to raise them. Access all of the services and resources available. Find someone who can learn how to care for your child so that you can have breaks and so you and your partner can go on dates……..even little ones like a twenty minute stroll outside holding hands, sharing wine on the deck or even catching a movie.

I would tell you that you know your child best of all and no matter what you are told by the doctors and other professionals who will be a part of your life, YOU know the answers. You will teach them about your child. At times you will question the validity of your intuition but after a while you will become profoundly aware of how accurate your gut feelings are when it comes to your child.

I would tell you not to be a martyr. Caring for your child will require tremendous focus and unimaginable energy and it can burn you out and make you sick when you least expect it. I would tell you to let your guard down along the way so that you can stay healthy in your mind and spirit.

I would tell you to seek out other mothers like yourself. This is, indeed, the road less travelled and you will feel very alone along the way especially in the company of healthy children and their parents. Yes, you will feel very isolated but know that we are here. Sometimes you have to look a little harder but we are here. You can find us online, in support groups and wandering the halls of the Children’s Hospital.

I would tell you that you will know far too much about the human anatomy, neurology, gastro-enterology, feeding tubes, pharmaceuticals, and so on, than a mother should ever have to know. I would also tell you to do some research to inform yourself but be very careful not to be overwhelmed by the internet and all of the information available to you. Having some trust in what your child’s specialists tell you can be very grounding. Other mothers and fathers of children like ours can be a wealth of information.

I would tell you that this isn’t an easy life. It is tough: there is no doubt about it but you are very capable and the rewards are great. You may never see your child graduate from university, walk down the aisle or give birth to your grandchildren but you will feel pure joy when your child laughs for the first time at the age of 3 years and 8 months. You will celebrate the moment when you connect with your non-verbal child. You will call your spouse at work to tell him that she has gained 4oz. because weight gain is always a struggle with our children.

I would tell you that you will have to witness procedures and surgeries and suffering well beyond what any parent should ever have to bear. But, I would tell you that you will be courageous and comforting because your child will be experiencing far more suffering than any child should ever have to endure.

I would tell you that your life will not resemble the life you had planned. It will be as though you landed in Holland instead of Italy but after some time, you will adjust the dreams you had and this reality will be normal to you. You will dream new dreams.

I would tell you that you might find yourself staring death in the face during close calls. You will be asked to fill out DNR (Do Not Resuscitate) forms and although you might make decisions to not resuscitate in the event of a cardiac arrest, when the moment arises, you will panic to think that it could all come to an end. And I would tell you to not feel guilty in the darkest moments when you pray to God to take your child if it would mean the suffering would end. This might horrify you but know that your love for your child is so great that at times you will believe that death would be a blessing.

I would tell you that others will not get it. They can’t. This is a very unique and complex journey on all levels. We cannot expect anyone to get it. And I would tell you that people— the cashier at the grocery store or your insurance broker or even your hair stylist— will say stupid things like, “God only gives these special kids to special mothers” and “God will only give you what you can handle.” You will nod and smile but eventually you will look them right in the face and tell them that those simple maxims are a bunch of bullshit.

I would tell you that imagining your future will be bittersweet and may involve a Plan A and a Plan B. Plan A will be what you will do if your child outlives the predicted life expectancy set forth by the experts and Plan B will come into play if they do not. You will catch yourself casually discussing your future with the code phrases of Plan A and Plan B.

I would tell you that grief will creep up on you after years have passed and you least expect it like at a wedding when the father and bride have their first dance or when you hear a birth announcement. It will also creep up on you when you see yourself in a new mother who is just beginning this journey.

I would tell you that you will recognize her because she is you from 7 ½ years ago. And you will want to run to her and hug her and tell her that everything will be okay. You will want to save her from the pain and the hardship and the unknown.

But I would tell you that when you find yourself sitting at the Children’s Hospital and you see a new mom and dad who are just starting this journey, you smile at them and walk by as they have their own path to travel and it will be different than yours. It may be longer or shorter. It may be more or less complicated.

I would tell you that her searching eyes are looking for some sign that she will survive this. And you, smiling as you pass, with your child arching all over your shoulder, will let her know that yes, she will survive this and may even thrive.

Julie Keon

June 29th 2011

Now online at www.WhatIWouldTellYou.com

EEG, take 2!

Wed, 17 Aug 2011 14:30:00 +0000

Ok, so last week's eeg got cancelled due to no pre-auth by the insurance company. Tomorrow morning, bright and early (very early in my book) we go to Ann Arbor and try again. Si and I will be there overnight, hopefully coming home by noon on Friday.

He has had a much better week in my opinion, even though he's still having seizures. He is happier, more alert and active!

Stay tuned for what we find out.

EEG

Wed, 10 Aug 2011 13:55:00 +0000

Tomorrow Simon goes in for another 24-hour EEG monitoring. Hoping to capture all these quirky episodes! Also hoping we catch them before the 24 hour mark so we can get out of there!

There is hope out there with a new drug so we'll see what happens after the EEG.

Thanks everyone!

Prayers

Sun, 07 Aug 2011 14:45:00 +0000

Please keep Simon in your prayers--a Hail Mary a day would be so wonderful--that we find the magic cocktail to tame these seizures.

Also, if you have 4 minutes, it won't be wasted on this video. If you don't have much time, move ahead to minute 3:50 or so.

This was grace - short film from Andrew Laparra on Vimeo.