Tuesday, August 30, 2011

My kid is amazing!

Jack's favorite thing is swimming lessons! He is in the Super Waterbabies class for the 2nd time. Before it was the mommy and me classes where I was in the water with him. He loved it and it was really just playing in the water, learning breath control, and having fun. Now though, they make him work.

We love Ms. Carly (his teacher). This is now the 3rd class he has been in with her. She knows him well, knows about about his seizures and what to do if he has one in the water, and of course is wonderful with him.

This session class is at 2:00 on Monday. 2:00 is a crappy time for a toddler and I've had to wake him up for the last 2 weeks to take him (something that I try to avoid at all costs) but it is the only time Carly is teaching the Super Waterbabies class.

The benefit... It is only Jack and one other little girl in the class! Jack has known Lilly for quite some time too. And they have the pool all to themselves. It's awesome!

Anyways, here is my "baby" finally starting to back float on his own!

Thursday, August 25, 2011

Running away

Jonathan and I are running away for the weekend. Ok, really we are just getting away for the weekend, but it feels so weird to be doing something so normal that it seems more like running away.

We are headed to Schlitterbahn tomorrow morning for a good chunk of the day. I think that is actually where we met for the first time when I was 13 and he was 16. We went with a group of his cousins and that was the last time either of us was there. Sadly, only about 1/3 of the park is open because school is back in. We really wanted to go after school was back in to avoid the crowds, we just didn't realize that they wouldn't keep the whole park open when it is still 107 outside. Sorry people, this is NOT fall.

Anyways, after playing at the park we are headed to Fredricksburg where we will be staying for two whole nights! I'm not even sure that I know what to do with myself. Holy crap, I might go nuts.

It is supposed to be extremely hot, so I don't know how much walking around we will do, but our bed and breakfast is just blocks from the main street and I'm sure we will find a vineyard or five to visit. I've never been to one, and I hear they have tastings.

We will head back on Sunday sometime after lunch. Or as long as I can take being away from this little dude.

In the mean time, Jack will be staying with my friend Rita for Friday and Saturday and then my mom is taking over Saturday evening and staying with him until we get back on Sunday. I'm not sure who I should worry more about, Jack, or the people taking care of him. I know that they are both perfectly capable and that Jack will have a blast with them. They know how to handle the diet and his meds, which is no small feat. But Jack has been getting up between 5 and 5:30 for the last 2 months now. He has one more week left of the med, and I hear it takes about 2 weeks after for them to fully adjust, but I don't think he is going to. He is just so used to getting up at that time and I don't see it changing ANYTIME soon. So yeah, Rita and Gigi are in for some early mornings... AND WE GET TO SLEEP IN!!!!!

Friday, August 19, 2011

What I would tell you

I read this tonight of Facebook and it really hit home. As we get closer and closer to surgery I find myself wondering more and more about Jack's future.

What will it be like? Will he be in special ED classes? Will he be able to play t-ball or soccer? Will he always be in some kind of therapy? Will he ever just get to be a normal kid? What the hell is "normal" anyways? Will he be able to be in boy scouts? Will he ever be able to go to summer camp without us? Or on youth group ski trips? Will he drive a car? Will he survive the surgery? Will he be the same Jack-a-roo that we know and love? The questions go on and on.

I am normally really good about not wallowing in the "why him, why us, why me?" questions. It does him ZERO good and if I let that go on, it could actually do him some harm. I've actually been really good at not being a martyr about everything that Jack deals with, because I don't want him to be that way. And because even though it's really rough sometime, I can not imagine my life without Jack or without Jack being exactly who he is. I'm not going to lie though, sometimes it really sucks. Like when cutting open his head and scooping out part of his brain is the best option. So I cook, and physically doing something helps at least lets me channel my energy into something. I would walk around the world for this child if it would help, but standing in the kitchen for hours on ends at least makes a little bit of a difference. I also pretty good about not worrying too much about the above questions, until recently at least. Which is why margaritas help.

Anyways, like I said, this is what I found...

What I Would Tell You…….

© Copyright 2011 by Julie A. Keon. All rights reserved.

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 honor 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

Wednesday, August 17, 2011

That weight loss thing

So I lost a good 12 lbs before the boat trip. Speaking of the boat trip, it totally rocked. Jack was having daily seizures when we went and the entire 4 days he didn't have a single one. NOT ONE. I think he's telling us that he wants to live on a boat. Which I'm all for, by the way.

We swam all day, had friends out, had great food, and Jack slept all night. I miss nights when he slept.

The only other thing that really sticks out in my head is that the last day Jack started to get sick. He was actually showing signs of acidosis, which is a VERY bad thing and gone untreated can lead to death. It can happen if his blood ketones (think ketogenic diet here) get too high. He was extremely lethargic, didn't want to eat, didn't want to drink, didn't want to move. Of course we didn't have any apple juice with us, which is what they treat it with, so we had to just get whatever carbs we could into him and get him back on land. He enjoyed his strawberries. We were headed back anyways and he perked up by the time we got home so we didn't have to take him in, but I was worried. But I had the dietitian on the phone in no time, I didn't have our blood ketone testing kit with us, and the nurse called later that day to make sure he was okay. But that is what I'm worried about with him being on the full diet while having surgery too because he likely won't want to eat much at the time.

Anyways, here are some pictures!

Since then both Jonathan and I have struggled with the weight loss. Lets face it, we are extremely stressed. We aren't sleeping much because Jack is on a diet that requires a lot of time and he is waking up at 5 every day, and the closer we get to surgery the more neurotic I get. 5 weeks from today.

We tried this crazy HCG diet that just ended up being a bad idea. We had awful headaches the whole 4 days that we did it, and I went from cooking every bite that one person eats to every bite that 3 people eat. The stress was enough to drive me over the edge and we were both on edge because we weren't eating much. We both lost 5 lbs in those 4 days but it just wasn't worth it.

Now, I am really just trying to keep from gaining weight in the next 5 weeks. If I can do that, I will deal with it after surgery. I would love to exercise, but when it's 100 degrees at 9:00 pm there ain't no getting outside. We quit the gym back in January because we weren't hardly using it and we just couldn't afford it anymore, so there goes our inside place. If I got more sleep, I would go at 5 am when we wake up but running on 5-6 hours of sleep just makes me really cranky.

I know that I need to stop making excuses, and after September is over I will, but until then we are all just trying to survive.

Tuesday, August 16, 2011


Okay, so here is a re-cap of our Houston trip.

We went over the 4th of July weekend for a MEG scan. The scan was to see if they could determine if Jack's seizures have a focus point. The reason we are going back down the surgery road is because his seizures were getting worse. The diet has helped a lot, but 5 seizures a week is still way to many.

We started messing with the diet and his meds to see if we could get them to reduce a bit, and they only got worse. He was on a med called Trileptal and he was having about 2 seizures a day. I didn't realize how many he was having until I slept in the same bed with him in Houston. The poor baby!

So we took him off of that med and put him on a different one and we are taking away one that he has been on for 19 months. If you are following all of this, you are doing better than I am! I can hardly keep up anymore. Thankfully the new med we are trying is actually helping. He is in the "honeymoon phase" where he isn't having seizures. When we do find a good med this phase lasts a few weeks to a month or so and then the seizures come back.

Anyways, back to our trip to Houston!

We headed down and ended up on the phone with the hospital for most of the trip trying to get everything set, the arrival time (which changed), and make sure they knew everything about the diet and what he can/can't have. Needless to say I was worried about how things were going to go just by all of the confusion on the phone.

When he wakes us up at 5 am it's all fun and games, but when we wake him up at that time it's the end of the world!

We had the best anesthesiologist ever. He was great with Jack and with us. He took us into the room with the MEG and explained what all was going to happen.

He wanted us there when they put him under and he let me give Jack a nail trimming after he was out, which is the best way to do a toddlers nails! After that he put us in the break room right around the corner from where they were doing the scan. I could stick my head out the door and hear Jack's heart beat from the monitors. He also kept us informed as they were doing things. After the scan was over, we walked with them up to the MRI room where Jack had yet another MRI. We got a text from the doc when it was done so that we could meet them in recovery.

We were there for a total of 9 hours, which made for a very long day, but honestly it was one of the best hospital experiences we've had so far.

That afternoon though, Jack was ready to go go go! We went to the Children's museum and played for a bit. He loved playing with the pretend food.

And I think daddy had just as much fun as Jack did!

The next day we headed down towards Moody Gardens and met some friends at the water park there. Of course our little fish could not have been happier.

We headed home the next day and Jack actually did pretty well in the car. Better then any other trip so far. He screamed a bit, but it wasn't a crying kind of scream. It was a make your eyes bleed and your fillings fall out kind of scream.

And we took a detour on the way home to the farm to visit with family. Jack had some fun with his cousins while we were there.

It was a very long weekend though and I'm glad it's over.

The scan did show that Jack is a surgery candidate. His seizures are coming from his right temporal lobe which is actually a really good thing. Only about a month left before the big day.