Wonder Pill? What would you do?

I just saw this article from the LA Times. There is actually a fairly large percentage of people who have a child with Down syndrome who would not give their child a hypothetical pill to "cure" them. Where do you fall? I wouldn't want to change Aidan's personality. If I could change one thing, I would make it easier for him to talk so people could understand him. If he had major medical problems associated with Down syndrome, I would change those (heart defects, etc.). That's about it for me. How about you?

Is a wonder pill necessarily wonderful for people with Down syndrome?

Our Latest Updates

I keep getting emails from various places all related to cognition and Down syndrome. It must be a hot topic these days in the Down syndrome world. That explains my last two posts.

I just took the kids to an H1N1 vaccine clinic and got their booster shots. The whole ordeal took 15 minutes (not counting driving). I'm so relieved to be done, and now I only have to worry about Liam. He'll be able to get a shot in January if he can avoid it until then.

Monday is usually the busiest day of the week around here. Yesterday we had a super monstrous Monday with added appointments. The thing is, it's not that uncommon for us to have a day like yesterday. Sometimes I wonder how my kids put up with it! Here was yesterday's schedule in a nutshell:

6am - Liam woke up and we stayed in bed and nursed until
7am - Aidan woke up; get Aidan dressed, feed Aidan breakfast
8:30am - wake up Brendan, get him dressed - he gets breakfast in the car
8:40am - leave home
9am - Aidan's PT
10am - Aidan's speech therapy
(9am - feed Liam; entertain the boys in a hospital waiting room from 9-11 while Aidan is in therapy.)
11:30 - play at home, feed Liam
12pm - lunch
1:15pm - leave for tutoring; stop at gas station and ATM on the way
2pm - drop Aidan off at tutoring
2:15pm - shop at Trader Joe's
2:40pm - feed Liam
2:55pm - pick up Aidan at tutoring
3pm - drive home
3:20pm - run into house, put milk and yogurt into refrigerator; back into car
4pm - my eye exam
5pm - still at eye exam; try to feed Liam but he will have no part of it
5:45pm - yay, eye exam done; back into car
6pm - in car, Liam screaming, pull over to feed him; he will still not eat. I'm guessing he's done with this day, too.
6:10pm - keep driving while Liam screams
6:20pm - get home; make a very quick dinner for boys, feed Liam
6:45pm - my nephews arrive to play
7:30pm - Scotte gets home; take nephews potty, load them and Liam into car
7:45pm - drop nephews off at their home
8pm - Aidan's parent-teacher conference
8:30pm - arrive home, put Brendan to bed
8:45pm - feed Liam and put him to bed
9:15pm - begin to make dinner for me and Scotte
10:30pm - finish dinner and cleaning up toys
11pm - bed

Yes, we have way too many days like that without 10 seconds to breathe!

Boosting Cognition in Down Syndrome

Boosting Cognition in Down Syndrome
By Greg Miller
ScienceNOW Daily News
18 November 2009

Boosting the level of a brain chemical reverses learning impairments in a mouse model of Down syndrome, researchers report. The work adds to emerging evidence that cognition-enhancing drugs may one day help humans with Down syndrome lead more independent lives.
Down syndrome is the most common cause of mental retardation, affecting approximately one in 800 babies at birth. People with the disorder have an extra copy of chromosome 21, giving them additional copies of hundreds of genes. This somehow alters brain development and causes mild to severe learning disabilities.

To investigate what goes wrong in the brain of someone who has Down syndrome, researchers led by neurobiologist Ahmad Salehi of Stanford University in Palo Alto, California, turned to a genetically modified strain of mice that has three copies of more than 100 of the genes found on human chromosome 21. These so-called Ts65Dn mice exhibit learning and memory deficiencies and other symptoms of Down syndrome. When Salehi and colleagues examined the brains of Ts65Dn mice under a microscope, they discovered degeneration in a region near the base of the brain called the locus coeruleus. This region contains neurons that extend armlike axons all the way to the hippocampus, a key memory center tucked deep inside the temporal lobes. These neurons release the neurotransmitter norepinephrine, which promotes learning and memory in the hippocampus.

Reasoning that the loss of the locus coeruleus neurons might undermine learning and memory by causing a deficit of norepinephrine in the hippocampus, the researchers gave Ts65Dn mice drugs that boost levels of this neurotransmitter throughout the brain. A few hours after delivering the drugs, the researchers tested how well mice were able to learn and remember an enclosure in which they'd received a mild electric shock. Without the drug, Ts65Dn mice performed miserably on this memory test, but with the drug they were as good as normal mice, the researchers report today in Science Translational Medicine.

Because this type of learning depends on the hippocampus, the findings suggest that's where the norepinephrine boost exerts its beneficial effect, Salehi says. Several drugs that enhance norepinephrine are already approved or are in advanced clinical trials for treating low blood pressure and other disorders in humans, which should make it easier to launch a trial in people with Down syndrome if additional animal studies support that approach, Salehi says.

"It's a very positive development," says Roger Reeves, a geneticist at Johns Hopkins University in Baltimore, Maryland. He notes that other recent rodent studies have suggested that drugs that target the neurotransmitter GABA, among others, may also help improve cognition in Down syndrome. Although some researchers have begun to test such cognitive-enhancing drugs in people with Down syndrome, Reeves says the studies to date have been small and fraught with methodological problems, so he doesn't consider them to be reliable. Even so, he says, "5 years ago I never would have believed we would be looking at this kind of fundamental therapy for Down syndrome."

Ginkgo

I have been reading a lot about the benefits of Ginkgo as a nutritional supplement for children with Down syndrome. There was a study done in mice with Down syndrome that showed improved memory in mice taking Ginkgo. I have always been very leery of all the nutritional supplements marketed to parents of kids with Down syndrome promising the miracle cure. I will not be giving my kid prozac anytime soon. However, the Ginkgo sounds promising to me. Have any of you tried it? What do you think the results were? How did you figure out a dose (the only dose I've seen in from the changing minds foundation, and it seems extremely large to me)?

Bath Time

I'm not entirely sure why, but the kids LOVE helping me give Liam a bath. They giggle and play like they're the ones in the water. They fight over who gets to rinse him (by pouring water over him from a bowl), so Liam gets rinsed about 10 times. He doesn't mind. He giggles and tries to eat the bowl. Mr. Liam is starting to be a handful in the little tub. He kicks and splashes and gets us all soaked. Lots of fun!

Brendan has been so clingy lately, so I'm following the doctor's advice and trying to get Aidan and Brendan to help me with things. He told me to give the kids lots of "important" jobs. Hence, the rinsing at bath time. Since it's the weekend and Scotte was home today, Brendan's favorite line of the day was, "Baby Liam wants to drink milk from Daddy today." If only that was possible...

Sharing Feast

Today Aidan's class celebrated Thanksgiving by having a sharing feast. I'm usually the one to go to the holiday parties at school (for obvious reasons), but today Scotte took a few hours off work to join Aidan. Aidan was thrilled to see daddy at school!

Scotte thought that Aidan had a good time. He was a little disappointed in the amount of direction Aidan was given today. They had different craft stations set up around the room, and basically when Aidan was at a station no one put in much effort to direct Aidan. Scotte said that once he showed Aidan what to do, Aidan was able to do it. For instance, when they were making necklaces out of dried pasta and beads, Scotte simply asked Aidan what he wanted to put on his necklace, let Aidan choose, then held the string for him to put it on. Or, when Aidan made a headband and resisted wearing it, Scotte simply told him how handsome he would be with it on, which did the trick. Well, I'm sure it was a hectic day with all the parents visiting. Hopefully Aidan gets a little more on-on-one on a regular school day.

Aidan making his necklace

Aidan and gal-pal, Braelynn

Game Night!

I am really enjoying the phase that Aidan and Brendan are in right now. They've decided it's fun to play games. Aidan's favorites are "Don't Break the Ice," "Picture Word Bingo" and "Barnyard Bingo." He also enjoys "Candy Land," "Kerplunk," and "Fiddlesticks." Brendan enjoys all of the above plus "Tic Tac Tony," "Diggity Dog," and "Cootie." I like having an activity that we can all do together. They've enjoyed playing with these games in the past, but they are finally willing to follow the rules. Sometimes they poop out before a game is finished, but at least there is some semblance of order. Even Liam enjoys watching the action.
Aidan's other favorite thing lately is playing silly snowmen on Scotte's iTouch...It's a great workout for his fingers.

All the kids are fever-free, but we're still dealing with runny noses and coughs. Aidan is much worse than Brendan in this department, but that's usually the way it is. Aidan has also been very tired still, sleeping 13-14 hours per night. He needs to rest.

Long day, Aidan's teeth and Liam's weight

We've had a few really long days (and nights) here with 3 sick kids. Today seemed a little better. Liam and Brendan were fever free, although still grouchy, and now it's Aidan's turn to be sick. I hate when my babies are sick. It looks like Aidan will get a day off school tomorrow. Every time he gets stick I start worrying.

Aidan's other top front tooth is loose now. Pretty soon he will have no front teeth. I wasn't quite expecting any of that until maybe first grade:)

I'm a little worried about Liam's weight gain (or lack thereof). He just had his 4 month check-up and weighed 13 lbs. 1 oz. Brendan weighed 16 lbs when he turned 4 months old. Since his last check-up he dropped from 50th percentile to 2oth. I think he is having third child syndrome. It is really hard to feed him sometimes because he is so nosy about what is going on around him. I don't think there is a problem with my milk supply. When it's calm and quiet he eats really well, but if anything else is going on he is on and off. The doctor wasn't too worried yet, but said that his lack of gain may indicate that he needs more food. He suggested that we start baby food, but I never gave my other two baby food until they were 6 months old. I'm not ready to do that with him yet. So, if anyone out there has 3 kids, have you had this problem and what did you do?

K and C

Brendan is very good at knowing what letter a word begins with when asked, but he is having one problem: K vs. C. He can't understand why cat starts with "C" but kitten starts with "K." He tends to dislike the letter "C," in general. Plus, he thinks he knows more than me so he will argue with me.

Me: Brendan, what letter does car start with?
B: K.
Me: No, car starts with C.
B: No, I said K.
Me: How about cookie?
B: K.
Me: No, cookie starts with "C" too.
B: No, mommy, K.

repeat 100 times with every other C word...

So, how do I explain this to a 3 year old? Or, maybe I shouldn't even bother?

Hand-Me-Downs

I just love this sort of thing! There are some baby clothes that I'm using with Liam now that were used on both of my sister's boys and all 3 of mine. Here is one outfit that has special memories for me. Sadly, I don't have photos of the day the memories were created, but I know my mom does. I was looking at them in her photo album last time I was home. I need to make a few copies.

It was the day after Thanksgiving, 2004. My sister had to work, so my mom, grandmother and I spent the day taking of my nephew Glenn, who was then 5-1/2 months old (He is now 5 years old - how crazy is that?!). My mom remembers that it was the last time my grandmother was healthy enough to drive herself to the house to visit instead of my mom having to go pick her up. I was pregnant with Aidan at the time, and my grandma was teasing me because I was trying to wear maternity clothes even though I had no stomach yet. Somehow it was more exciting the first time around:) My nephew, Glenn, was very strong on his legs and was wearing this cute ducky outfit and bouncing up and down and laughing really hard (funny because Liam has no interest in using his legs yet). It was just a very fun, relaxing day. I would love to have another day like that to spend with my grandma.

I don't have the photos from the day, nor do I have photos of my nephew Jacob in the outfit. But, here are my 3 boys wearing it (in order: Aidan, Brendan, Liam)...

This is why I love hand-me-downs. I love the beautiful memories!

Feeling better and feeling worse

My friend, Diane, made me feel a lot better about Aidan's tooth. She said that her daughter (who has Down syndrome) lost 8 teeth between the years of 4 and 5. Okay, so maybe Aidan's tooth loss isn't so abnormal!

As far as feeling worse, Liam has had a cold all week. He started with a low grade fever all day Monday. Tuesday night the fever came back, followed by cough, runny nose, etc. One night I didn't get more than 20 mins sleep at any stretch. Oh, my poor little baby! Today he had his 4 month check-up and got several vaccines. Now, he has a fever again. My little man needs a break! Brendan also started with a fever today. I knew something was coming when he didn't want a Krispy Kreme doughnut for breakfast today (we bought cream filled doughnuts and he only took one bite).

I'm thinking it will be another long night for us all...

Lost Tooth

(this photo was taken with Scotte's phone, so it's not so great; plus, he's sitting on the potty, so not the best background)


Today, my mom and I were playing with Aidan when we suddenly noticed that one of his top front teeth was missing. I have no idea how it happened, or even where the tooth is. Maybe he swallowed it? Isn't 4 a little young to be losing teeth? I have an appointment with the dentist on Monday. It's so weird to see him without a tooth! I can't believe he lost one already. He was 15 months old before he even had a tooth! I really wish he could just tell me what happened.

For just a second...

I was playing on the porch with the kids when Liam needed a fresh diaper. I left Aidan and Brendan alone for just a second while I changed the diaper, then I headed back to the porch. This is what I found when I got back...At least it was chalk and not markers! Now I need to have a conversation with Aidan's OT. Aidan was using a very nice tripod grasp with his LEFT hand. He also started cutting with his left hand. But, he eats with the right, kicks balls right footed, throws right handed, etc. I'm confused!

Craig's List

I can't believe I haven't posted anything on here since Friday! Scotte has had some work to do on the computer in the evenings, which is usually the only free time I have to put anything up. Here I am trying to squeeze this in before breakfast..

I have to share my new love of Craig's List. I have always enjoyed Craig's List and we have found some great deals on there in the past. This weekend I found a used elliptical machine for $200. I am pretty excited about this. Back in the day I exercised every day for at least 90 mins. I would run outside 4 days per week, then 3 days per week I would go to the gym and use the elliptical and lift weights. I don't think there is any way in the world I could ever go on a diet, but I love exercise. Since Liam was born I haven't found the time to even start walking again. When I do go for a walk, I have 3 kids with me, one of whom walks. Walking at the pace of a 3 or 4 year old does not equal a stress-relieving workout. Exercising has always been the best way for me to relieve stress. So, now I can use the elliptical in my own home in my own time. Even if I just use it 15 mins per day, I know I will feel a lot better in general.

We also posted a couple of things on Craig's List to sell this past weekend. One was a treadmill that is at least 15 years old (but still working just fine). It kills my knees, so I can't use it. It belonged to my parents, then my sister, then me. I sold it for $100! We also had a broken washing machine in our garage which we sold for $100 (we explained everything that was broken and sold it as is). So, we made back the cost of the elliptical. Now, I'm looking through the house to figure out what else we need to get rid of. I'm so excited!

I have some cute kid stuff to post as the week goes on! More later!