Monday, February 19, 2007

A Lovely Day

We all had the day off today so we decided to go to the California Science Center, where they are having a Star Wars exhibit.

About 4 weeks ago, we started showing Moira the original Star Wars Trilogy. She LOVES it.

So, the Science Center is having an exhibit of models, costumes, droids, and Luke's Land Speeder. Totally Sweet!

The funny thing is as soon as we head of for any adventure, Soren smiles. He seems to get that we are all out and than makes him happy. We were driving on the freeway, and he was giggling his head off. Yes, he had hiccups. Still, for whatever reason, it all was amusing him.

The museum was packed! We bought out tickets, had McDonald's (much like Children's Hospital, the museum has an "in-house" McDonald's) and saw the fantastic Star Wars exhibit.

(Note to anyone who wants to go. The usual "free" wait is about 2 1/2 hours. Granted, we went on a holiday. To get in on the "express" pass, you have to pay to see an IMAX movie. These are about an hour. BUT then you get taken into the "short" line of only about 25 minutes. It all depends on how you want to spend your time--standing and waiting or watching a movie. We saw a movie about Hurricane Katrina. Very cool, though it freaked Mo out.)

My point is, we had a good day. Soren had no seizures. We went to Exhibition Park (which, to my memory, I've never been to). We ate McDonald's (Soren had Filet O' Fish). We saw a movie. We saw cool Star Wars stuff. We all had fun. That's all I can ask.


Sunday, February 18, 2007

Better Days

Soren has been doing much, much better the past couple days. Friday he only had that one seizure and was quite happy the entire day. His fever (which was only between 99-100) finally went away.

Saturday we had no seizures and he was a silly delight. And so far today, things are going well.

Hopefully this latest medicine increase will hold us a longer.


Thursday, February 15, 2007

A Rather Crappy Day

Not to bum you all out, but we had a bummer of a day yesterday.

Soren was supposed to go back to school today. Instead, he had a seizure at 6:40 am. A tonic-clonic, otherwise known as a grand-mal, seizure. Tonic is when you stiffen, clonic is when you shake

He then went on to have 8 more seizures for a total of 9. Out of those, 7 of them were tonic-clonics (the other 2 were rapid eye shaking).

We had to pull out the oxygen tank since he was holding his breath.

The thing is, seizures beget seizures and he began to loop having a seizure, going post-ictal, coming out of that briefly, and then seizing again. Finally after his 8th seizure, I gave him Diastat.

I don't remember if I've written about Diastat before. It's a rectal gel of the drug diazepam, which is commonly known as valium. Thus the DIA (for the drug name) and STAT (getting the drug in quickly). It stops the cycle--at least you hope. Soren had one last seizure after he recovered from being super-drugged by the Diastat. Then he ate a good meal and passed out on Aaron.

At 3 am Soren was babbling up a storm. Probably talking about his crappy day.

Today he's only had one seizure so far. He had a little fever, which is probably the cause of the whole mess. We got the okay to increase his Lamictal again. Let's hope it kicks in quickly.

Right now he's happy and kicking. What a boy!


Tuesday, February 13, 2007

Soren's Surgery

Soren's eye surgery was yesterday and it went very well!

However, the day itself was a little nutty. We had a plan. Both kids were off from school. So we decided to take Moira along with us, bring the DVD player, my laptop with a Math and Reading computer game for her, books, and activities. Children's Hospital Los Angeles even has a McDonald's. We figured we were set.

We had to get up at 4 am to get to the hospital by 5:30. Both Aaron and I are fighting colds, so we slept horribly. Then Moira ended up waking up at 3am with a TERRIBLE earache. After giving her Motrin, we headed off the hospital.

We got to Children's, where everyone was terrific. They got Soren checked in and into pre-op quickly. They gave him "happy juice" to relax him and help lessen any seperation anxiety (which Soren doesn't really experience). However, it did relax him enough so that he pooped. I, of course, lef the diaper bag downstairs with Aaron and Moira. I went to get it and saw that Moira was still in a lot of pain. Aaron gave her Tylenol to see if that would help. I went back up, changed the boy, and he was headed into surgery by 7:30.

Soren's surgery was supposed to take about 2 1/2 hours, so I got my pager from the waiting room and we zipped over to the ER to see if we could get Moira's ear looked at. The ER appeared to be empty. Aaron and Mo went in to have her checked by the nurse. Everything seemed to be going like clockwork. Then they called me in to the ER waiting room. Moira's face was splotchy from crying so much. I'd never seen her like this. It was time for more Motrin, so we gave her the concentrated drops we carry in the backpack for airline travel. That's when we got the news that there were about 5 patients ahead of Moira who had been waiting for 2 hours on the other side of the ER. Ugh!

Then a little before 9:00, my hospital pager went off--way sooner than I expected! I quickly walked back to the other side of the hospital and waited to be called up to post-op. There was Soren, conked out. His doctor said everything went perfectly. He wanted Soren to take his time waking up. The nurse said it would take about another hour. I told her about Moira being in the ER. So she told me go back but to return by 9:30.

I quickly walked back to the ER. The Motrin had kicked in and Moira looked-and felt-much better. By now we were all starving. I checked at the desk and there were still a number of kids-with more serious problems-in front of us. We decided to just go to Mo's pediatrician that afternoon and to get some McDonald's!

Those hash browns and that Coke were SO DELICIOUS!!!!

I then went back to post-op where Soren woke up VERY SLOWLY (in hindsight, Moira and Aaron probably could have returned to the ER, but oh well.) We finally got out of there a little before 11. Moira got her ear checked and did, indeed, have a bad infection.

In the end, I think Soren did the best of all of us. He was smiling and giggling the rest of the day. His eyes are very red and bloody looking in the corner where the muscle was cut and then reattached. This redness should last around 3 weeks. We have to put in drops four times a day for a week to prevent infection. And for 24 hours we had to make sure he didn't rub his eyes and tear the stitches, so we had restraints to immobilize his arms. It looked like some sort of torture. Moira asked if it was punishment. But now that he's past that point, his arms are free!

His eyes look really straight, which is pretty darn cool. He seems to be looking at things longer and trying to figure out what this new world he's looking at is. I can't even imagine what this is like for him. I just hope his brain is figuring out how to get these two eyes to work together. And I'm excited to see what else may change with this new vision.


Wednesday, February 07, 2007

The Ashley Treatment

I've been meaning to write about this for a while. It's been in the newspapers and magazines. I don't know how many of you have noticed it. Having a special needs child, I have.

There is a family in Washington State who has a severely disabled daughter named Ashley. She stopped developing mentally at 6 months old. They don't know why. All tests were inconclusive. She has no hope of mentally progressing past where she is.

So they went to her doctors and, together, made a choice. When Ashley was 6 1/2 years old, her parents decided to give Ashley high-dose estrogen treatments to stop her growth. Along with this treatment the doctors also performed various surgeries--a hysterectomy, removal of her breast buds--to keep her the size of a 9 year old the rest of her life.

People are rather divided about this issue. Half find it "inhumane" and merely "convenient". The other half sees that the treatment was done truly in Ashley's best interest and support the family in their choice.

I'm in the other half. I totally understand where these parents are coming from. They did this out of love for their daughter--their daughter who they hope to care for and keep as part of their family (they have two other children) for the rest of their lives.

If you go to their site or Google The Ashley Treatment, you can read every well-thought-out reason they did this treatment. I could restate every reason here. But since they have taken the time to putting up a site and stating everything so clearly, you should really read their own words.

My main thought, though, is that unless one is in this situation, it's impossible--and almost arrogant--to judge. There are people called "medical ethicists" involved in judging these parents. There were medical ethicists involved in listening to the parents' original request. Those ethicists helped okay this treatment.

But now there are medical ethicists from outside the case who claim this is not an appropriate treatment. That it dehumanizes the disabled. That is was done purely for convenience. I think many of these ethicists are saying these things to be quoted in papers and speak on radio shows. Because if they took the time to read what these parents have written, they'd realize this is crap. This girl is not minorly disabled. She is severely, mentally disabled with no hope of change.

I think one outside ethicist’s comment was that this treatment was unseemly. Someone on the medical team responded that. To him it was more unseemly to have a woman who was physically 30 years old with the mental capacity of a 6 month old than a woman who was physically 9 years old with that same mental capacity.

Another ethicist commented that people with a disabled family member get the help they need. Now, while there are many wonderful caregivers out there doing a great job, the fact is, there are more unreliable ones. I've spoken to more frustrated parents who go through nurse after nurse then parents who are over the moon with the fantastic care they've found for their child. The pay for in house nurses is lousy compared to those who work in hospitals. So you end up with a lot of flaky caregivers. (Though, I have to say, we haven't had this experience because we got personal recommendations for respite workers and then got them approved by the company). Still, in the end, many families feel that for their loved one to get good care, they have to do it themselves. And that is, quite honestly, exhausting.

Every other reason Ashley's parents gave was also clearly for their daughter's well being--if she grew physically into adulthood, it would be harder on her body (bedsores which can lead to infection, a bigger body is more taxing on organs). She is not going to have children, so why have a uterus? Why have the discomfort of menstruation? Her family has a history of breast cancer and the women tend to have large breasts. This would be uncomfortable for her considering she spends most of her life on her back.

And, yes, in the end doing this treatment makes Ashley more portable. But that was not the primary reason for this treatment. Still, I'd understand it if it was a motivating factor. I'm 5 feet tall. That's 60 inches. Soren is over 37 inches. Getting him in and out of the bath recently became too difficult for me. I was afraid I was going to drop his slippery body. So now he's in the shower in his special bath seat. It's better, but it still isn't easy.

That being said, this is not a treatment we are considering for Soren. Unlike Ashley's parents, we do have hope for Soren's mental development. That's why we're going to the DR two more times this year.

Still, if that hope doesn't pan out, this is an interesting treatment to consider. I have huge fears of Soren being a full-grown man who does not have the mental capacity to care for himself. I fear what it would mean for his health. I fear what it would mean for my health. I fear what that would mean for us as a family. How things would have to change while knowing that I would always want Soren to be with us. These parents made the choice that they felt was best for their daughter and their family. I just hope we never have to make that choice.