Felbatol

Since 1993 Thomas had been on the same seizure medication and taking the same dosage of the drugs. As of yesterday we’ve increased his dosage. I can’t tell you how happy this makes me. Not that we’ve increased his dose, but how long we have been able to go on the same drugs with few seizures.

Thomas was born in March of 1986 after a full term uncomplicated pregnancy. He was 6lbs. 12oz and was diagnosed with hypoglycemia at birth. He had a seizure 2 days after birth. He stayed in the NICU for 2 weeks and we were sent home with him on Phenobarbital for seizures. Since his birth we have never really had another sugar problem.

After much testing and many doctor visits by 3 months of age, we told Thomas was normal and we were to wean him off the Phenobarbital. By 5/6 months of age Thomas wasn’t hitting any of the milestones that babies are suppose to hit. He would about every 3 or 4 days do these full body jerks like he was trying to do a jackknife off a driving broad. This was a terrible and frustration time for I started trying to convince doctors that there was something wrong with my child. I took Thomas to any doctor and specialist I could find. Once I even made a doctor cry, she told me to join a support group; I yelled back “a support group for what??? You won’t tell me what’s wrong with my child”

After Thomas was more then a year old, a miracle happened, a doctor looked me right in the eyes and said “Your son has a serious seizure problem, I’ve seen him seizures many times in your short visit here. I hate to tell you this but he’s probably severely mental retarded too, and if you need a label for him to get some kind of help, I’ll label him with cerebral palsy today.” I smiled, for I knew there was something wrong and I wanted a professional to tell me. The doctor wanted to know why I wasn’t crying over such sad news.

Trying to control his epilepsy was impossible. We would give him medicine and the seizures would stop or slow up for only a brief period of time, only to return full force, seizures were daily occurrences. Often Thomas was hospitalized to change drugs. During a hospital stay he was hooked to an EEG for more then 24 hours. Throughout that EEG, it was well documented that there were only 3 times went he went more that 8 minutes between seizures, most of the time he was having one seizure after another. How is he to learn anything with seizures relentlessly interrupting his concentration?

After trying every anti-convulsive on the market, we even tried ACTH injections. Nothing worked well, until 1993 when the drug Felbatol was introduced. Two days after starting to take this drug, Thomas seizures dropped and his awareness and responsiveness increased. He became more aware of his surroundings, more responsive, started showing likes and dislikes. It was wonderful until….

The following summer, warnings when flying about the drug causing aplastic anemia, your body stops producing new blood cells and people were dying. Doctors were advised that their patients should stop taking the drug. I begged, I pleaded to keep my son on this drug. I wanted quality of live over quantity.

14 years later he is still taking Felbatol for seizures. Thomas has changed a lot over the years. I am happy to say that I don’t mind an increase in dosages. A seizure free Thomas makes for a happy mom.

What a Package!

I had planned on tell you about my “certificate of appreciation” awards that I received from Thomas’ school today. It’s nice to be thanked for the time and effort you put into things; but having your named called out for an award following a list of students received awards for being “good wheelchair pusher” it somehow loses its grandeur. I guess I’m only as special as they are.

After the award ceremony was over and we arrived home. We discovered UPS dropped off a package to our address, but it wasn’t our name. The name was really weird but had mostly the same letters that would be in my name. Mark opened the package to discover that it was over $90 in hardcore XXX comic books. Who ever ordered this also paid an extra twenty bucks for two day shipping. What on earth am I to with them????? Gifts for Father’s Day???

I hate fishing

Why don’t they listen??? Thomas is 21 years old and on average his blood is drawn 4 times a year. Blood work is to be drawn before he has his morning meds which is usually given at 7am. You only need about 5cc or a teaspoon of blood for all his blood work. Being that Thomas has never really lifted anything in his life to develop the veins in his arms; getting blood out of him can be extremely difficult. Now if I could just get those lab people to listen and understand me. For if you use a butterfly (type of needle) in the top of his hands, you’ll get enough blood for all his testing on the first try.

This morning was our bright and early trip to the lab. Of course after I try nicely to tell this woman what works with my son. She brushes me off for I know nothing; I am just an overly protective mother. She is a professional at what she does and has been doing this for years. She sticks Thomas with a needle in the arm the same place everyone else does on everyone else. Naturally she doesn’t even get a drop of blood. What happens next??? She goes fishing! She takes the needle in my son arms and fishes it over this way, and then over that way, sticks him even deeper looking for blood. Sorry, I have to stop this for this is ridiculous and has never worked.

She then kind-of starts listening to me, Thomas is then stuck in the top of his hand but not with a butterfly, but with a regular needle. We at least get to see a few drops of blood, but by now, Thomas is getting agitated and irritated. Hooray, she stops before fishing for blood!

Before her third try, I explained that I have a 3 strikes and your out rule. I will allow you, the professional, to try to poke my son 3 times for blood, and if you don’t get enough, you’re done. That’s it, AND THEN I want SOMEONE else drive out to my HOUSE, and have them draw Thomas’ blood there. It’s a lot of work, loading him and his wheelchair in the car, driving there, unloading both for nothing, then loading them back up to head for home, only to unload again to get into the house.

Finally she gets out the butterfly, she sticks it in the top of his hand, within seconds we have more than enough blood and we are on our way home.

Happy Mother's Day

For Mother's Day, but not on Mother's Day, I took my mother to her brother's greenhouse. My gift was to have her pick out any and all plants, flowers, and seeds for this years growing season.
My mother was very pleased and happy with this. On Mother's Day the greenhouse was packed with people. Yesterday just a few other people were there. Mom got to take her time and drop in on her brother. They looked at old photographs before we started getting plants.

Mother's Day

When everyone around the table is being silly and your darling husband is encouraging them to do so, don’t ask “where’s the carrots?”

For the Evil MIL

Do you have a despicable MIL???
So you don't know what to get her for Mother's Day?! Well, I've got the perfect gift! Its chocolate modeled after someone's a-hole. According to the makers the candy has “aphrodisiac properties and is also good for helping to ease a hangover."
That's funny, because just the notion makes me queasy.

Just another day

While my husband was at work, working farm equipment the wind blew and something on a bailer hit him in the face. Thank God it wasn't nothing serious. I don't need any more stress in my life right now. Thomas lately has been having more seizures then normal. He had been sick, so I'm sure his med levels are off. I hate running to the doctors and the lab to have things checked out. A handicapped van would be nice.

You can tell I'm feel better for I moved some of my house plants outside today. Some of my plants I have had before Mark was even born. Mark will be 20 in October. Yes, I often get sick of them, but than I'm also proud to have been able to keep them alive and health this long.

Going to see G!

Our weekend at Laura was fun in the beginning and terrible at the end. Our first day there Don shot a wild turkey! Hooray! It is hard not to look out any window at Laura’s and not see a turkey or deer. I suggested dressing as a hog farmer and to wait by the pig poop and shoot a turkey there. Don sat in a turkey blind out by a creek with the decoys and tried calling turkeys in. As he was quitting for the night, he walked along the path that the hog farmers use, looked over by the pig poop and there were turkeys. Found a tom and shot. Later he told me I was right and he should have listened to me, you don’t get to hear that often.

This is my favorite picture of the weekend. G went from not walking to running. And she talks just as much as she walks. Don and I took her with us to the grocery store. She loved pointing to things and telling us what they are, like apples. She also reminded us of the things you forget about babies, like how a BM during shopping trip can shorten it. I loved it too that the few times my daughter would stretch out and lay on the floor G would try to sit on her head. I also loved that G would forever bring Thomas toys to play with and she loved helping me tube fed him. She's a joy!

The terrible part of our trip was when Thomas and I were left home alone. Casey and Don took a load of pigs on a 3 hour one-way trip. Laura and Georgia went to a baby shower. I knew from noon to 4:30 we’d be home alone. Tom started in with terrible and constant diarrhea. I surely could have used help, lots of help for it was everywhere. I thought I was going to run out of diapers before anyone got home. Things got so bad that I ended up doing all the laundry in the house too. Guess who else ended up sick that night? Me! Our 4 hour ride home felt more like 9. When we would stop to change Tom’s messy diapers, Don would wait until I was done vomiting before continuing on home.

I’d like to say it was a wonderful weekend, but there is a few things I could have done without.