Frustration

The word for the day is…FRUSTRATION. I sent Taylor to school today because she has been fever free for over 24 hours. Well, I got a call from the school nurse at noon saying I needed to come get Taylor because she had a temperature of 100.3. Taylor's teacher and I both tried to explain to the nurse that the new seizure medicine Taylor has started has a side effect of increased temperature. Also, Taylor can't regulate her body temperature because of her brain defect. This is documented by a doctor in her school file.

However, the fever nazi didn't want to listen to any of that. I even sent the print out from the pharmacy listing the side effects of the drug. The teacher tried to explain to the nurse that they can tell when Taylor is sick by her actions and she was not acting sick in any way, shape, or form. Taylor did not want to come home. She loves school. Besides, I had her 3 year evaluation meeting at the school anyway, so I had to bring her back with me. She had 25+ seizures in 30 minutes this morning as well, so that was just one more thing for the nurse to latch on to though her teachers are very good at dealing with Taylor when she has bad seizure days. I love her teacher and the aides…they rock!

It's always fun when Taylor is evaluated by the psychologist. It's so anti-climactic. Taylor is still a tardy…what a surprise. Okay, I realize that sounds awful but honestly, sometimes you just wonder where common sense is. Taylor can't take an IQ test. She only has 9 words in her whole vocabulary and maybe 10 signs. I don't need it in writing that my child has a lower IQ than 99% of the people her age.

Some of the things they write are funny. I love this line from Taylor's evaluation…"She knows several signs receptively and signs the word "bathroom" when she needs to use the restroom, but also seems to use the sign when she wants to escape an activity." That is just too funny to me. Sometimes these evaluations can make me a little down, but for the most part, I've gotten past that.

It's trying to figure out what Taylor will be able to do after she "graduates" from school that is frustrating. She is such a social butterfly and not going to school every day is going to be rough for her. She is also too delayed to get a job. I do think we've found a program for her that will meet her needs for 2 – 3 days a week, a couple of hours a day. I still have until June to figure it out.

Sometimes…& Seizures Suck!

I got my first blog award. Thanks Jennifer. I know that I blog as a way to vent and I do hope that what I write can be of help to others but I will admit that there is also a part of me that likes it when I know people are reading my blog. I like to get comments. While that isn't the sole purpose of blogging, I would be lying if I said I could care less whether anyone comments…I do.

Today has been a rough day here. Taylor has been on the new seizure med Banzel since Thursday night. I know that it hasn't had a chance to build up in her system but I sure hope it will hurry up and help. The school called today and I had to go pick Taylor up. She was seizing too much for them to handle. Taylor had over 40 seizures in 20 minutes. The teacher/aides are very good about writing down every seizure and the time and the poor lady was carrying around a piece of paper trying to keep track.

She came home and has been seizing like crazy. She's had some serious drop seizures. There's a second nature to Taylor. I think she has an aura or something because she'll be standing there and then all of a sudden reach for the wall/chair/person…whatever she can grab to hold on to a second before she would have fallen due to a seizure.

Probably 3 – 4 years ago, I would have packed her off to the ER for IV Ativan to try and slow down her seizure activity. Now, I just don't see the need. Her seizures are uncontrolled…I know that. I just don't want to fill up her time with short acting medicines and needles (even if she does have a port).

Sometimes I feel like I've given up on her. Sometimes I second guess my decisions and wonder if I'm doing what's best for her. I hate those feelings. I feel that I'm making the best decisions I know how to make for Taylor but I guess only time will tell if I've chosen correctly or wisely.

There are no absolutes when it comes to treatment for Taylor. I just know she is much happier throwing her toys into the bathtub than she would be, in the hospital, hooked up to an IV being pumped full of a barbiturate.

The rules state that I get to pass this along to 15 other newly discovered blogs that I love. Should any of you choose to accept this mission…post it on your blog together with the name of the person who has granted the award, and his or her blog link. Pass the award to 15 other blogs that you’ve newly discovered. Remember to contact the blogger to let them know they have been chosen for this award. I don’t have 15 blogs to pass it on to, but I am going to pick those blogs that I think rock! Please check them out, they are great reads.
1. Blogzilly
2. ConlonClan
3. Model Trains – A Hobby Revisited
4. Lila’s Miracle Life
5. The Bates Motel
6. Rissa Roo & Her Family Too
7. Lia Joy
8. Paisley Place
9. Alabama Slacker Mama
10. Anemone Pie
11. Colton’s Journey

Writing Her Own Pages

Today was Taylor's appointment with the neurologist. That's nothing new. We've gone through 15 neurologists in 20 years. Only 2 of them were because we didn't like them. One of the ones that we kicked to the curb had the gall to tell me that at 5'7'' and 105 lbs, Taylor needed to lose weight. I think I stood there for a few minutes dumbfounded. What the hell? I'll have to share that story sometime.

We decided to start Taylor on the new seizure drug Banzel (rufinamide). This will be on top of the other 3 drugs she takes: Keppra, Zonisamide, & Clonopin. This drug was specifically made for the condition Taylor has, Lennox-Gastaut. She has started having drop seizures again and I'm hoping to stop those. The absence & complex partial seizures are bad enough without adding those. Before her brain surgery, the drop seizures caused a broken leg, several broken noses, a huge blood clot in her butt from falling backwards that had to be surgically(350cc's of blood removed + a drain for 7 days) removed, and other countless bruises and scrapes.

I was talking to the neuro today about Taylor losing some of her milestones. She is a sweet women and an awesome doctor. She genuinely loves Taylor. Anyway, she was telling me that for some MRDD patients, she thinks that it was just their time to lose some abilities…especially when she can't pinpoint another reason. However, with Taylor, she knows for sure that it's the seizures that are causing her to regress.

She said to me, "Taylor is living on precious time & she is writing her own pages". That sentence touched my heart. The combination of Taylor's medical issues is unique. The Trisomy 9p is rare not to mention that she was born with unrelated birth defects involving her brain, kidneys, & stomach. So yes, Taylor is writing her own pages in a medical journal, but I think there can be so much more to that statement.

Taylor is writing her own pages in this world. She is leaving her mark in her family's hearts & I haven't met many people who aren't touched by Taylor's sweetness. I do know that Taylor is living on precious (borrowed) time. Having the neurologist say it does make my heart skip a beat but I'm not going to start paddling down that river of denial now. I know that nothing will ever prepare me for the loss of my Taytiebug. I'm just going to enjoy each & every day of her precious time here on earth & keep hoping that she has much more precious time with us.

Sanitizing Police, Taylor, a Cow, & a Seizure

Today was Taylor's port flush. She has it down at the infusion center in our local hospital. With the H1N1 flu going around, they have instituted some severe restrictions when entering the hospital.

No one under the age of 12 is allowed in the hospital at all unless they are the one being treated or tested. No one under the age of 18 is allowed in the Maternity area. When you enter the doors of the hospital, you are greeted by the "Sanitizing Police". (Please note my restraint in not calling them "Sanitizing Nazis".) You are required to hold your hands out for them to squirt sanitizing foam into.

Because Taylor was the "patient", I had to wear a name tag with the date of the visit written on it. Now, I'm not knocking these precautions in any way. I understand in keeping people as unaffected by this flu virus as possible. It was just a sudden shift as I was just at the hospital a few days ago.

The Bossman was nice enough to download my Halloween videos off of the camera and so I'm going to share one of Taylor, the cow, and a seizure. I missed the beginning of the seizure, but I think I caught enough of the one we call "the elvis" to give you an idea. She can have as many as a few hundred+ of these a day. It's funny how as soon as the seizure is done, she "says" something. We may not know what she is saying, but it's definitely something. The Bossman wonders if it is actually part of the seizure itself or if it's a coping mechanism for her.

Surgery is Scheduled

Taylor & Daddy @ the Circus

The surgery has been scheduled for September 14^th. We have all the pre-op stuff going on next week. At least the surgeon is having the blood drawn when they do Taylor's port flush on Friday. I am not really worried about the actual surgery. Goodness knows Taylor has had a lot of surgeries. I suppose I should post a list one day.

This VNS implant has caused problems since the unit was replaced in 2007. Now, this surgery is going to take 2 different surgeons and 2 separate incisions to complete. The ENT surgeon says that their biggest hurdle is moving the unit to another place on her chest without messing up the wires. His actual words were "wreck the unit". If they do that, then he will just clip the wires attached to the vagal nerve, remove the device, and close her up.

We will then see if she seizes even more than she does now. If she does, we get to go for our 5^th "VNS only" surgery and start all over again…this time, with the implant in the spot it should have been in 9 years ago. Okay, so I'm not as bitter as I seem. I realize that 9 years ago, Taylor was one of the first pediatric patients to have the device. It was also implanted by a neurosurgeon. He was only doing what he thought best.

Taylor has a very high pain tolerance. However, this surgery is one of her more painful ones. She recovered from the pain of brain surgery 10 times faster than did from the VNS surgeries. I'm sure the fact that they are cutting the same scar from the first surgery for the 3^rd time doesn't help.

Yes, even after dealing with a medically fragile child for 20 years, I still have "why" tantrums. I don't think that will ever go away. I think you just learn to adapt after so long and those moments come less and less. No matter what though, there will always be those kinds of days in the future…it just comes with the territory. Otherwise, I'd be in the padded party room with other moms/dads of special needs kids.

Seizure Salad

I'm sure you are probably wondering about the title of my blog. I have always dealt with things using humor. It just makes things easier for me. If I don't laugh, I'm going to cry and laughing happens to be more fun.

The phrase "seizure salad" came into being thanks to my brother. Years ago my brother took my girls and I out to dinner. I was a single mother trying to raise three girls, work full-time and deal with Taylor's ever increasing seizures. Taylor was having a particularly bad seizure day. She also happens to love salads. She won't eat cakes, candy, or other sweet things but she will devour a salad.

Anyway, the waitress came to take our order. As she went around the table asking everyone what they wanted, she got to Taylor and asked what she wanted. In the middle of asking that, Taylor decided to have a huge seizure. Without skipping a beat, my brother told the waitress that Taylor wanted a "seizure salad". She kind of looked at us and asked did we mean "Caesar salad"? My brother said no, for her, we call it a seizure salad.

Needless to say, we all started laughing hysterically. I couldn't help it…it was funny. The waitress laughed for a second then I guess she felt bad for laughing even though we told her it's okay it's how we deal, she wouldn't wait on us anymore. She was angry that we made her laugh at that.

So now, when Taylor has really bad seizure days, we call them seizure salad day. I'm sure that is not as funny to everyone else as it is to me, but it still makes me chuckle thinking back to that day.

It's been a rough day for Taylor today. All her seizures were big one and they just kept coming. She couldn't even enjoy the park when her sister took her today. Normally Taylor loves to swing, but not today. She just sat on the bench, seizing away.

I've decided that in the next few days, I'm going to write Taylor's complete history from birth until now. I think it will be better if I break it up into parts. It's just all in my head so it will be nice to have it written down in one place.

A Long Story

Taylor right before getting her PICC line.

We are going through another VNS issue. Taylor had the Vagal Nerve Stimulater implanted way back in 2000. She was 11 years old. Taylor has Lennox-Gastaut so her seizures have been very hard to control. She has Trisomy 9p which has left her profoundly developmentally delayed. When the neuro-surgeon thought it would be a good idea to put the device under her breast tissue for cosmetic reasons, I thought that was nice. I wasn't thinking about her as an adult female and realizing that she didn't really need that area to be cosmetic. No one was seeing her there but me, her sisters, or a healthcare provider. I just wanted to stop the constant seizures.

However, that decision has come back to haunt me. In December of 2007, Taylor's VNS battery needed replaced. Now an ENT does the procedure because he is more familiar with the neck. He was not used to having to dig in breast tissue to retrieve the unit. They are now placed in the chest like a pacemaker.

Not to be crude, but Taylor is about an A/B cup so she doesn't have a lot there to begin with but the surgeon still had to dig around to retrieve the unit and replace it with a new one. They just hook up the old wires to the new VNS. They don't really unclip the wires from the vagal nerve. He finally finished the surgery and closed her up. He used the original incision site from 2000…he didn't have much choice. Well, a few days after surgery, we noticed that Taylor's surgical site and breast were swollen and very red. It was the weekend so I took her to Urgent Care. They took one look at it and sent us next door to the ER. They said it was post-op infection and Taylor needed IV antibiotics. Now, Taylor's veins are pretty well shot because of so many surgeries/blood draws so it took 4 different people 7 sticks before they got a vein. They finally got an anesthesiologist to get the IV in.

So, home we went with a hep-lock and orders to return to the infusion center for the next 10 days for IV antibiotic therapy. Monday when we went to the infusion center, they saw how bad Taylor's veins were and called to doctor for an order for a PICC line. Anyway…the PICC line was a success and we spent the next 10 days making daily treks to the hospital…including Christmas Day. She ended up keeping the PICC line for several months which as it turned out was a good thing.

Several months after the initial surgery, I was getting Taylor dressed when i noticed that something wasn't right about her chest. To my horror, the VNS implant had fallen down in her chest and was now pushing on the scar. We made an emergency appt. with the doctor and he was horrified. He scheduled an emergency surgery to try and fix it so it wouldn't pop out of her chest. He did his best to try and shove it back up and make a pocket for it above her breast tissue. That was last year.

Here we are again. It's now fallen again and the doctor is in the process of scheduling another surgery. He wants a general surgeon to help with this one. They are going to go in the previous incision, disconnect the wires, pull them up in her chest, and make another incision where the implant should have gone years ago…below her collarbone and put it there. The doctor says there may be a chance that they "wreck" the implant or the wires not go where they want them to. In that case, they will just take it out, clip the wires and close her up. If they find that the VNS was helping her seizures at all, they will schedule another surgery to try again with a new one. At least now, she has a port.

Now, when it was first implanted back in 2000, it never worked for her. Her seizures continued to get worse. In 2003 she had a corpus callosotomy. Of course, being Taylor, she couldn't do anything easy, so she had a stroke the day after surgery. Of all of Taylor's medical issues, her seizures have been the most problematic. She is diagnosed with intractable seizures(Lennox-Gastaut)…nothing has worked so far.

Sorry for the long post. It's just been long overdue and I needed to get it all out.

The Place I’m At

I've really put off writing this post here. I guess because it feels like I'm giving up on my child. I would like nothing better than to bury my head in the sand and say that everything is just fine and Taylor's seizures aren't quickly taking her away from us.

None of the medicines, not the VNS implant, and not the corpus callosotomy has taken away the seizures. The brain surgery did stop the drop seizures for about 4 years and for that I am eternally thankful. While the hundreds of absence & complex partial seizures she has continued to suffer from have not been great, they have actually been more of an annoyance than anything else.

All that is changing now. She has started having more and more drop seizures and some days, it's just too hard for her to function. We've watched her lose abilities and become unable to do some of the things she used to do. She can't carry her food/drink to the table any more for fear of dropping everything during a seizure.

We've been told that it's probably best that we try and plan "things" now as it will too hard when the time does come. I always thought her heart defect would eventually be what caused her the most life-threatening problem. No, it's going to be her brain. That part of Taylor that makes her the happy, loving, funny, silly person that she is will eventually be what takes her from us.

I realize that no one knows the future and Taylor could outlive me. I also know that the signs I'm seeing now tell me that I need to cherish every day I have with her, knowing that one day, in the near future, she could just slip away.

I'm torn between pestering the neurologists for something that will help and not filling up what could be a short time left here with tests, needles, and doctors.

Yeah, so that's where I am right now…torn between reality and denial. I think I like floating down that river better.

Wistfulness

I've been doing a lot of "blog hopping" lately and I've come across some wonderful blogs. I wish I had known about blogging, or even computers back when Taylor was born. I would have loved to have chronicled our journey from the very beginning.

Alas, I did not enter the computer age until relatively late in my life...2001 to be exact. I didn't learn about blogging until a couple of years ago. Now I know more about computers than I really want to know. *laughs*

Taylor has had so many surgeries and so many procedures and they are all in my head as well as the entire list of seizure medications we've been through. However, I don't have a recollection of my day to day emotions when Taylor spent most of 2003 in the hospital…first because of nonstop seizures, then the brain surgery, followed by the stroke, with inpatient rehab at Children's Healthcare of Atlanta.

I remember bits and pieces from that time. I remember all my belongings in storage because there wasn't enough money to keep an apartment and stay at the hospital. Let's face it…I lived at the hospital anyway, so why pay rent when you can sleep on one of those "oh so comfy" parent couch/beds?

I've also realized that as Taylor gets older, I've become less aggressive with trying to find cures and treatments. It's not that I don't want my child to be healthy. It's more because I know that my child is medically fragile. She's had 20 more years on earth than anyone said she would. I don't want whatever time she has left to be filled with needles, tests, surgeries, and drugs. It's bad enough taking her once a month for her port flush.

Sometimes I wonder if I'm being a bad mom. There is that selfish part of me that wants my child here with me forever. That conflicts with the part of my mom self that just wants my child's life to be happy. Taylor has very specific things that make her happy…her mp3 player, throwing toys over the shower curtain and into the tub, playing Sesame Street Toddler on her computer, being able to lay in her bed and flip channels on her TV with her remote, caffeine-free diet coke, and going to school.

That's Taylor's life and I don't want to inject doctors and hospitals in there unless I absolutely have to. The biggest thing I would love is to take Taylor's seizures away. That is what interferes with her abilities. Unfortunately, her brain keeps finding ways to seize no matter what we do.

I thank God every day that he gave Taylor to me. She is loving and happy and that's all we can really ask for our kids.

A Little About Taylor

We have finally weaned Taylor off of the one seizure medicine. I haven't noticed an increase in her seizure activity but then, she has so many seizures a day, I think it would be hard to tell. Now it's just getting someone to prescribe the new drug. Taylor sees 2 neurologists and they each think the other one should follow Taylor and prescribe the new medicine. It sounds like a comedy of errors right now.

Taylor is having some pretty rough seizure days right now. The seizures come like contractions…anywhere from 10 to 30 minutes apart. There are hundreds of them a day. She will just start shaking or staring off into space. Her absence seizures usually involve her eyes looking off to one side and her rolling her hands up in her shirt. She actually has a seizure we call "the Elvis". She shakes on one side of her body and one side of her mouth sort of goes up in a sneer…sort of like Elvis Presley. There are just some things that are better dealt with using humor.

Taylor loves her mp3 player. Right now, she is fixated on listening to it all the time…especially when she is throwing her tub toys over the shower curtain and into the tub. There is just something about the sound of the plastic hitting the tub that makes her laugh. Taylor also loves her photo albums. We have family pictures in there and she will look at them so much that we have to buy new albums for the pictures about every 6 months.

She still loves Spongebob Squarepants, but she has found the Nickelodeon show "Drake & Josh" now. We will hear her in her room laughing hysterically. I think it's because she has always found slapstick kinds of things funny. Taylor also loves car magazines. Mustang 5.0 is her favorite but she will look at the free AutoTraders till they fall apart. I have no idea what it is about car magazines that she finds so fascinating. I just know that when we go to Wal-Mart, she is drawn to the magazine section.

Taylor is definitely an interesting character.

I Know…

I wrote this just after the death of John Travolta's son. He was 16 and died from a seizure. That is something that we have to deal with as well…knowing that at anytime, a seizure could take Taylor away from us. I decided to repost it here…where it will finally have a home.

I've seen the news reports on the death of John Travolta's son. It breaks my heart. I know, first hand, the fear that grips your life everyday when you have a child that suffers from grand mal seizures. I know what it feels like to see your child fall in a heap, hitting various body parts on furniture and the floor as they thrash around. I know what it's like to take your child to the ER in your car and in the back of an ambulance because of injuries suffered during a seizure or because the seizures won't stop.

I know what it feels like to give your child one medication after another in the hopes that this is the one that will work. I know what it's like to plan your activities around "is this a 10 seizure day or a 100 seizure day?" I know what it's like to have people stare as your child hangs on you while she has a seizure in Wal-Mart. I know what it's like to watch medicine after medicine, surgery after surgery, even brain surgery, fail to stop the misfiring of your child's brain. I know what it's like to have a doctor look you in the face and say, "I'm sorry, this will most likely be how your child dies". I know what it feels like to go into your child's room praying this isn't the day you will find her gone instead of just sleeping longer than usual.

I also know how cruel and callous people can be online. I have seen people think it's okay to call people bad parents and be mean and nasty simply because they think anything goes as long as it's online. I know the hurt words can cause. Maybe before people start spewing their hatred and misery towards someone else, they should take a good look at themselves and wonder what exactly they are doing to make this a better planet. Maybe, those small-minded people who have nothing better to do than to criticize how other people parent, should ask themselves, "what would I want to hear in my time of sorrow and need" instead of "what can I say to be nasty".

Because I refuse to end this in a bad way and because my child deserves better: I also know the kindness of strangers and their offers of help even when there is nothing they can do. I have felt the hugs of nurses and doctors when their medicines can't help and all they can give me is their compassion. Most importantly, I KNOW the love of my precious Taylor and the utter joy that she takes in every moment of her life.

Hope Springs Eternal

So, the beginning of this month, Taylor and I made a trip up to OHSU in Portland for Taylor’s video EEG monitoring. That is always so much fun…not. We did get to come home after 2 nights there.

The fact that we never have to spend the usual 5-7 days because Taylor seizes so much just doesn’t seem like a silver lining. I think I would much rather spend a whole week at the hospital with her just to capture 1 seizure instead of 2 days because she has had hundreds of seizures.

Having gone through the escalation of seizure activity once before, I really don’t look forward to what things are looking like. Taylor has had seizures since she was 8 months old. Luckily they were controllable until she was 10 years old.

Once she hit 10, we started on a downward spiral culminating in brain surgery, a corpus callosotomy, in 2003. The surgery was absolutely the right thing to do at that time. Taylor was spending more and more time in status epilepticus and it was threatening her life.

The surgery resulted in a stroke, but I have never regretted making that decision even though it’s hard. That is probably an entry in itself…making those life-threatening decisions that we as parents of medically fragile children have to make.

So, now we are back on our seizure escalation treadmill. Today has been a rough day because she has a lot of drop & complex partial seizures. As it stands now, further surgery just isn’t an option. Focal point surgery would be our only option, but then there is no definable focal point for Taylor’s seizures.

The bright spot is that the FDA just approved a new seizure drug specifically for the treatment of Lennox-Gastaut seizure disorder. We are in the process of weaning her off 1 of the 4 seizure medications that she is on so that we can start the new one. If it works, we may try and get her off at least one other one.

My First Post

I decided to start a journal talking about my experiences being the mother of a special needs child. My daughter is 19 years old now. When she was 8 months old, I was told that my daughter wouldn’t life to her 1st birthday. I planned her funeral. Needless to say, she proved the doctors wrong.

Life is a little difficult right now. My daughter is suffering from intractable seizures. She has a vagal nerve stimulator and she has had brain surgery yet she still has many, many seizures a day.

The one good thing is that she smiles through it all. She is happy and easy-going. I’m very fortunate that she does not have behavior problems. I don’t want to spend this whole post listing her medical problems. I want this to be a blog that uplifts as well as a place to vent.

Maybe it will touch someone else.