Sunday, September 28, 2008

Powerless

So I've been waiting to write because I want to have good news, I want to be excited and tell all of you that the diet is working and all of that crap at the hospital was worth it. It's not working. Dermot's seizures are getting more frequent everyday. I can't stand it. I want to get inside his little brain and rewire it some how. I'm not ready to give up the diet yet, There might be some fine tuning to do, we'll see. It was a bad weekend for Dermot. That equals a sad and frustrated mom. I just want the Dermot from last year back. I can't have him. I'm heartbroken.

Stay tuned, I'm calling the doctor's office tomorrow to get some answers and ideas of what to do next. The scary part if the diet doesn't work is the alternative. Another new drug. I hate trying them because I get my hopes up and he changes, depending on the side effects (lethargy, irritability, sleepiness, etc.) The odds that new drugs will work decrease dramatically the more drugs you try. So the theme for this message is: powerless. I have to wait and see. Your thoughts and prayers are needed, I need your strength.

more later...

Monday, September 22, 2008

First day of fall.

When you don't know what to talk about, try the weather. Gorgeous day today, a strong breeze and sunshine. Our family took our usual after dinner stroll thru the neighborhood, nice.

Joe and I actually went out last Saturday night, I wore make-up and everything! Here's the proof:

We were home by 10:30 though. We attended a benefit concert for a respite center for parents of terminally ill children and parents that have lost a child. See link: Faith's Lodge

It's a sad and scary topic, but we were glad to contribute to it, Soul Asylum played. TOO LOUD!

How's Dermot doing? His seizures have come back a bit. Not as much as before. The doctor warned us that there may be a "honeymoon" period when the seizures disappear, then they return. We're going to work with the dietitian to change the ratio of fat vs. carb/protein to see if that will help. Cross your fingers for us!

We also just hired a part-time nanny today! Hooray! Her name in Rachel and she'll be working with us Mondays, Wednesdays and Fridays. She'll start next week. She's a student at the U of M and has a lot of previous nanny experience. She did admit that she doesn't have any experience with special needs children, but told us she's ready and eager to learn. And teach her we shall. She'll be here for Dermot's OT and PT appointments. I'm so relieved we found someone we like. It will make our lives a ton less stressful.

Owen is doing great at his new class, he talks about all of the new friends he's meeting there, him and two of his friends even got in trouble for writing all over his face with a marker last week. Funny.

Thursday, September 18, 2008

Equipment

I remember the first "equipment" that Dermot's physical therapist brought into our house. It was a clunky purple chair with lots of belts and a harness. It was so Dermot could sit upright "by himself" and play. I cried when it came in. Dermot's condition was real now. He wasn't sitting in the bouncy chair made for babies 10 pounds lighter anymore.

Now, I welcome the "equipment" into our house. Most of it's on loan from the school district. He has a stander to help with his hip development and a tumble form chair (big blue, as my husband calls it) to allow him to sit up comfortably by himself, (he grew out of the purple chair over a year ago) and his new "stroller" that offers him great support while being out in the world. The latest piece I just ordered is a bath chair. It's made out of PVC pipe and a blue mesh fabric. This is the first one we've had to pay for out-of-pocket. $315 for a bath chair.

It got me thinking. What do parents do that can't afford $300 for a bath chair? Or even the $250 co-pay we paid for the stroller that usually costs $3000?
I am a fan of the TV show Extreme Home Makeover. They are always giving new homes to less advantaged people. Most of the families have kids with disabilites and they set them up with thousands of dollars worth of equipment to make their lives with their children just a little bit easier. Stay tuned, I'm going to find a way to help these families too.

I have a nickname "stroller queen" because I have bought and tried so many different brands of strollers I could run a store. I had a reason for my purchases. I was always searching for the perfect stroller for Dermot to be comfortable in and to make my life easier. I wanted to be able to stay mobile with all the kids, I wanted to still look like a "normal" mom with my kids. Well, I have given up my stroller ways, because I discovered that Dermot is happiest riding in his "Equipment", my only regret is that they don't make a double so I can roll Ryan around too. So for the near future, you'll see me walking with Dermot in his stroller and Ryan in the Bjorn. Ryan better learn to walk soon, because he's getting really heavy in his carrier.

Big guy!


Holy cow, Ryan is 4-1/2 months old and weighs 19.65 lbs. That's bigger than both his brothers at the same age. I think my muscles are in trouble. Ryan's check-up went great. "He's perfect" said the doctor. Whew.

The new diet

This seems to give a good explanation of Dermot’s new diet.

So far so good, Dermot’s seizures are few and far between now. He has about 3-4 a day instead of 30. Keep praying for him, it’s working! We still can change the ratio of fat/carbs & protein to fine tune the diet…

Link to keto diet

http://brainblogger.com/2008/09/05/when-alternative-isnt-anymore/

Sunday, September 14, 2008

Saturday, September 13, 2008

Rice, rice baby!


Little boy Ryan tried rice cereal for the first time tonight. He gobbled it right up. He opened his mouth for every spoonful and ate the whole serving. My mom swears that it will help him sleep thru the night. I'll keep you posted on that.

Maybe tomorrow

Well, today was much better. Dermot slept thru the night and woke up looking much better. He was talking a lot today, I got a mat and stretched him out and did some sit-ups. Then the therapy dog Buddy came to visit. He's a little Welsh Corgi. What a nice surprise to have a dog at the hospital, the kids seemed to really enjoy him.

Dermot also played for a while. The ward has a chair just like the blue one we have at home, so Dermot could sit and play. We read some books that our friend Lisa dropped by and we sang for a while too. The doctor wanted to see how his system responds to the Bicitra medication before letting him come home. I'll feel better when I know it's working. So we will most likely bring Dermot home early Sunday afternoon.

I just returned from the grocery store with all the new foods on Dermot's menus: mayonaise, heavy whipping cream, butter, cheese, etc...Weird huh?

We've seen some promising results as far as seizure activity goes, they've been reduced dramatically so far. We're keeping our fingers crossed.

Thursday, September 11, 2008

Almost done?

Yesterday: yuk.

Dermot was suffering from acidosis-too ketotic. He was lacking in CO2 in his blood which made him lethargic, irritable and worst of all, not hungry or thirsty. The doctor said push the fluids and gave him a medication to correct the imbalance. He had a full night's sleep and looked a little better this morning.

After good lab results this morning Dermot had a decent breakfast of applesauce and eggs with cheese, cream and a lot of butter, ummm. He ate all of his lunch too. I think he's getting better, it hasn't helped that he brought Owen's cold with him. The doctor said he may be able to come home tomorrow or Saturday at the very latest.

I thank my many visitors for their company and food, it makes me feel stronger when I have good friends around to support us.


It's an interesting place, the pediatric epilepsy ward, most kids have helmets on and are hooked up to EEG machines. The kids are connected to long cords so they can move around outside of their rooms. They have a play room, a television, a computer and the most popular item is the Wii. The kids range in ages from 4 months to 19 years, girls and boys. They are from Wisconsin, Iowa, North Dakota, and Central America. Some are trying new drugs, some are gearing up for brain surgery and some are being monitored to record seizure activity. All the parents are searching for answers, just like us.

I'll keep you posted...

Tuesday, September 9, 2008

Progress

Okay, second day of the Ketogenic diet and Dermot's hospital stay: the first day went good, he fasted for only 20 hours and they determined he was ready to begin eating his new food.

His first meal: about a tablespoon of pureed chicken, a pat of butter, 2 oz. of whipping cream and a 1/3 of a banana. Not much. Of course he ate it all, but was upset when that's all we could give him. The first three meals are about a third of what his regular portions will be, his next three meals will be 2/3 of is full portions, then after that he'll be able to eat his full carolic intake of 1050 calories a day.

Today was harder than yesterday. Dermot woke this morning to a needle in his arm to get blood to check his labs. They discovered that he was becoming dehydrated so they wanted to put in an I.V., I strongly objected, but after a few tears and some heated discussions with the nurse and the dietian I agreed to the I.V. They said it's common for kids to become dehydrated while switching over to the diet because it's such a shock to his system. Bummer. Then the physical therapist showed up and started working with Dermot, but Dermot said NO WAY and wanted some big hugs from mom and dad to settle him down. I was so encouraged by his first day I thought the rest would be smooth sailing, not so. I just have to remember what a shock this is to his body.

Next up, continue monitoring his blood sugar and ketone levels and continue the meals. By Wednesday night he should be able to eat a full size portion for dinner.

Thanks for everyone's well wishes, I REALLY appreciate it!

One day at a time...

Sunday, September 7, 2008

The hospital

Tomorrow's the big day. 5-9 days in the hospital (Children's St. Paul) to start the Ketogenic Diet. Joe and I will take turns spending the night, yipee. I just hope we don't have a loud roommate or any roommate. The first two days Dermot will fast, yuk. While he's busy doing that, Joe and I will get educated by the dietian on how to prepare and feed Dermot his new food. Today I got a head start and gave him whipped cream and scrambled eggs with butter for breakfast. I think I might end up gaining some weight from tasting the whipped cream for every meal. We'll sweeten it with Stevia, a natural sweetener, it works great.

If you're looking for something to do, please feel free to call us on our cell phones, offer to bring us lunch or dinner, or just stop by and visit..it will make the time go by a lot quicker. I have the latest issues of People and Us waiting to be read, plus a few books I haven't been able to finish.

I hope Dermot gets through the first part of this process okay. The book tells me that after we're released it may take a few weeks to fine tune the diet for optimum seizure control. I'm just worried that he won't eat the food because it's so different from what he's eating now.

Let go and Let God.

I'll keep you posted.

Saturday, September 6, 2008

Thursday, September 4, 2008

First day of school


Owen had his first day of Pre-K today. He'll go Monday thru Thursday mornings.

He was a bit shy when I dropped him off, which is a bit strange for him. But when I picked him up he was all smiles and made a few new friends.

Wednesday, September 3, 2008

appointments...



Today Dermot had his MRI and his blood drawn for some genetic tests. He did great, 90 minutes later he woke up shivering from the anesthesia, hungry and happy.

Later that same day, Dermot's new "stroller" arrived.
We've been looking forward to and dreading the arrival of Dermot's new "mobility device". It will allow him to be MUCH more supported while sitting, thus more engaged with his environment. It's a little scary because I'm sure we'll get "the stare" a little more than we do now, but I'm learning to get used to it.

Today was also the last day for Aunt Mary and Aunt Susan to stay with us. Everyone appreciated their visit. They made a few dinners for us and watched the boys more than once. What a helpful and enjoyable visit!



Next week is Dermot will start the ketogenic diet. We'll be admitted to the epilepsy ward at Children's St. Paul on Monday and have been told we'll be there 5-9 days.

Here's a link to more on the Keto Diet

It's going to be a lot of work, but it may mean getting Dermot off some of his seizure meds and be rid of the side effects that come along with them.

More info will come later...