Aaron's Dream

This is a note from Aaron, Soren's Dad...

Amy has done a wonderful job with keeping folks informed with this blog. I’d just like to share a bit of what helps me believe Soren’s life will be better.

In 2004 during a particularly bad patch of seizures, I had a dream. At that point, Amy and I were slightly delusional from the 24/7 seizure assault. But the dream was real. It was dusk. I was standing on our back patio watching a group of children play in the backyard. Soren is standing next to me. He turns and grabs my hand. He grabs my hand just like Moira does. Instantly, I know he is 4 years old. And although I don’t see it, I know that he can walk.

Soren will be 4 in six months. He has a long way to go before he stands, let alone walks. From this blog, you know a bit of the road we’ve traveled. But when things look bleak, I remember Soren standing next to me holding my hand. And I hope.

Aaron

The Eyes Have It!

Soren had his 5 week post-surgical check-up today and his doctor was VERY pleased! Not only are Soren's eyes straight, he's actually using both to see!!!

Let me recap a bit. Soren had strabismis surgery to straighten his eyes. He clearly preferred his left and his right would turn in quite a bit. We patched for a while trying to make sure that his right eye had about equal vision to the left before doing the surgery. We did this because, if the vision wasn't close to equal, his brain might not figure out how to work the eyes together even if they were straightened. So, after the surgery, his right eye may have looked straight, but it may not have been doing any actual looking. The trouble is, since Soren can't talk, it's all guesswork. We had the option to wait a few months and continue patching. But we decided to take a chance.

And, for once, that chance has paid off! HOORAH!

His vision isn't just cosmetically straight, it's (hopefully) functionally straight.

Now how does the doctor know this? Well, let me tell you. I had noticed over these past 5 weeks that Soren's right eye would drift OUT a bit now and again (something it had never done). BUT, every time it did this, the eye then came back into alignment. His doctor also witnessed this and said that this indicates that his brain knows that drifting out is not where the eye should be. So then his brain actively pulls it back so he can see properly--WITH BOTH EYES!!!!! Amy

My Little Stinker

On Tuesday I got a call from Soren's PT. No matter what she did, she could not wake him up to do therapy. He was just out. She asked if everything had been going okay, seizure-wise. I told her I sent Soren off that morning without incident. I thought he was being a stinker, yet again.

However, when Soren and I were walking home from picking Moira up from school, he had a seizures. A big one. Tonic-Clonic. 90 seconds.

So my theory changed and I figured that Soren probably had a seizure right before therapy and was then post-ictal during therapy.

At home that afternoon, he had 2 more big seizures. Having finally figured out his pattern of having seizures and then coming down with a cold, I kep him home on Wednesday.

Of course, he had no seizures (which I'm fine with) and he had no real cold symptoms beyond a very mild fever. And he was a delight all day. Kicking, giggling, smiling. We even went out to lunch together.

I swear the seizures take years off my life. But then he's such a sweetheart (and a stinker) that he charms me between those horrible bouts.

Smart boy.

Amy

Genetic Test Result

Well, after getting Soren's blood drawn back in December and waiting these many months for the results, we got a call today saying that Soren DOES NOT have the CDKL5/STK9 gene mutation.

What does this mean? Well, as far as his treatment goes, absolutely nothing. Even if he did have this mutation, we wouldn't be changing anything, it would just answer the question of why Soren has seizures.

Chances are, it's some other gene mutation that they haven't discovered yet. So now we wait around and call the geneticist back in a year to see if they've made any new discoveries.

We're perfectly happy with these results. Always nice to find out your kid doesn't have something with a lousy prognosis. But, in a way we were hoping to have an answer. Then we'd be able to test Moira so she could make an informed choice when having children. But we have many years before that's gonna happen!!!!

And we're bummed we don't get to come out with our new T-shirt line. We were going to make Soren a shirt that said MUTANT: CDKL5. Gotta have a sense of humor about these things. Maybe his actual gene mutation will have an even cooler name.

Amy

Been Awhile

Sorry I haven't posted in a bit. We've been busy!

On Saturday the 24th we went to the Getty with my Dad to see the Icons of Sinai. It was a LONG day at the Getty, but the kids were troopers. Soren ate crab cakes at the fabulous Getty restaurant (that kid has the most adventurous palette). Moira made lovely pieces of art. And the Icons were amazing. We got into the exhibit and Soren started laughing. Who knows why? Maybe he saw some angels. But through that whole, busy day he was alert and happy. Not one complaint.

I don't want to say that the next day was the opposite, but Soren had his opinions about things. He complained and wanted to be held by Aaron so they snuggled. Then he complained some more and wanted to be held by me. When we were watching the Oscars, he was sitting up on the couch with me in his Special Tomato seat. My arm and shoulder were near him and he purposely leaned into me to rest his head. Just a big Mr. Snuggles.

And his eyes are looking FANTASTIC!!! The redness is almost gone. They are SO straight! I can see him working that right eye. It's pretty awesome.

So that's the update! I'll try not to take so long next time!

Amy

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.

Amy

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.

Amy

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!

Amy

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.

Amy

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 http://ashleytreatment.spaces.live.com/blog/ 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.

Amy

Eye Surgery

Soren is scheduled for eye surgery Monday, February 12th.

As you can see in many of his pictures, Soren's right eye turns in.

I've written about how he prefers his left eye. We've acutally been patching his left eye for about 3 to 4 months to strengthen his right eye.

His neuro-ophthalmologist feels that developmentally, Soren's brain is probably about ready to start working on his eyes moving together (this usually happens in typical kids between 3-6 months of age). Despite his age, this is where Soren is developmentally. And he's been making some good progress lately (he's holding things better with his right hand, he's responding when we ask him questions now and again).

There is only a brief window of opportunity when the brain is able to learn to work the eyes together. If it doesn't learn then, the brain learns to instead work them seperately.

So, we are doing the surgery in the hope that this is the right time for Soren's brain to learn to work them together. We are also hoping that his vision is about equal in both eyes. The latter is a little difficult to tell since Soren can't answer the question, "Which is better, 1 or 2?" But, as well as we can estimate, Soren's vision is about equal.

I'll update about this after the surgery so you'll know how it did.

Amy

A Good Week

I know I'm celebrating a good week early, but I want to celebrate it while it's still good. Soren has had, actually, a GREAT week.

After that rough weekend I didn't know what to expect. Well, my fears were set aside because he's been chipper, babbling, alert, kicking, eating well, responding when we talk to him.

On Tuesday he had a great Physical/Occupational Therapy session. And he'd really been giving them hell the past few months.

He'd did so well on Tuesday, I was nervous for Wednesday. Same therapy center, but different therapists and he's REALLY been giving that pair a rough time. When Soren was dropped off from school yesterday, I asked his bus driver how he seemed after therapy. He said Soren was singing going in and singing coming out. So what happened inbetween?

I called his therapist for the update and she was SO HAPPY. Soren had done the best he'd done in months. She said it was like a different boy. He sat on the swing, he didn't complain, and he worked very hard.

So I want to celebrate this success while it's here. Good job Soren!

Amy

Living in the Now

Living in the Now is very hard when you have a sick kid.

I was just having an email exchange with my friend Dayla whose son Fyn was diagnosed with cancer last year. He is doing well, thank goodness. But, just like seizures, cancer can come back. And that's what we two moms were discussing.

You worry constantly about what will be. What could happen.

I had a rough night last night. Aaron was gone. Soren had had those bad seizures.

I wondered if I should have Soren sleep with me. I know many parents of kids with seizures who always sleep with their kids. I respect that. But I don't do that. I need to sleep. Soren needs to sleep. And while I could be there for a seizure, I can't stop it. I'm sure some parents think I'm awful. But I need to be there for Soren, Moira, Aaron, and myself in the morning. That won't work with a lack of sleep.

So I let Soren sleep. I slept reasonably well, considering. And in the morning, while I was still tense, Soren was quite well rested and went to school without incident.

I felt like I was on call all day. I feared a call from school. And while this was mildly nerve-wracking, it made me appreciate the day a little more.

I appreciated the now. What I had. I met with a friend. I worked on one of my scripts. I had lunch celebrating a former co-worker's birthday. And I never got a phone call telling me to pick Soren up. My kids got home. We did homework, I bathed them, fed them, put them to bed. It was nice.

It's so hard with a sick child to appreciate when things are going well. A good CAT scan. No seizures for a day. But, as with anyone, you have to because if you focus on the negative--and we all have negative out there that can consume us--you'll go nuts.

My goal each day is not to go nuts. I'm sure it's a goal many of you have as well.

Good luck.

Amy

Post-Ictal

Soren had a seizure yesterday and just had one today. Today's was a strong tonic-clonic (stiff, jerking) and lasted about 1 minute. Soren is now post-ictal (asleep). And I realized that after he seizes I'm a bit post-ictal as well. I've been walking around in a daze for the past 30 minutes.

I did manage to weigh Soren. We think that he's been having a growth spurt. He seized a bit over a week ago and didn't come down with any illness. We got the okay to increase his Lamictal and he did well until today. So I checked to see if he's any heavier. He's gained about 2 pounds. So then I called the pediatric neurologist on call. I'm waiting for him or her to call me back so I can find out if I can increase his medicine again.

But until then, I'm a bit stunned. I decided to write to at least get some of this out of my system. It's just me, Soren, and Mo right now. Aaron's working.

Soren just woke up. I guess I better come out of my shock as well and get dinner ready.

Amy

Sweet Kids and UCLA

Soren had the most lovely teacher ever at UCLA's Early Intervention Program. Her name is Lisa. And she had a lovely assistant teacher named Ingrid. Since they have both left the program and miss the kids so much, they have set up play dates every two months to see the kids.

We went to one today. It was the second we have gone to out of three. It was so nice to see both Lisa and Ingrid. And to see the wonderful children that Soren went to school with.

I've gotta say, everyone is doing SO well. While Soren was having a rough and fussy day (there was some constipation involved--I'd be fussy too!), everyone else was in top form.

A little girl in Soren's class who was only being fed by feeding tube during school is now being fed orally (thanks to the wonderful feeding therapy at Pasadena Child Development Associates!)

And a little boy who I just love was scooting all over the playground looking for action!

Children are interacting, thriving, and doing so well! It's so exciting to see!

UCLA really provided a fantastic program for Soren and so many other kids. And that is ALL because of Lisa, Ingrid, and the fantastic staff there.

I'm so thankful Soren had his time there. He grew so much. I'm sorry he was being such a fussy budjet today because he grew so much there as well.

But in two months we will meet again. Hopefully he will have done his business BEFORE we go!

Anyhow, it was great to see how amazing these amazing kids are. I love them all!

Amy

Moira Kisses

Moira was in a very kissy mood last night. And so she began kissing on Soren, who was sitting in his feeding chair having just finished dinner.

The more she kissed him, the happier he got until he was finally smiling and giggling at the kisses.

I then asked him if he saw his big sister. He had been looking away from her as he got his kisses. I asked him again, "Do you see your big sister standing next to you?"

Soren has the most amazing and expressive eyebrows. He was clearly thinking, trying to get his brain to get the message to his body. And it took him a couple seconds, but he finally turned his head and looked right at Moira.

I asked him if he liked the kisses. And, I kid you not, we all heard him say in a little voice, "Uh hunh." Aaron and my jaws dropped. Moira about passed out.

He looked away again. She gave him more kisses. I asked him again if he knew his sister was there. And, again, after a couple second delay, he moved his head and looked at Moira.

Now those are some powerful kisses!

Amy

Encouraging Words

Everyone knows it's a small world, after all. And once you've entered into whatever subculture your life places you, it gets even smaller. One of our subcultures is epilepsy. Another is stem cell treatments. And now and again, these two collide.

We had to set up a special needs trust--a trust that would make sure any money Soren inherited at our death would be safe and that his services wouldn't be taken away due to this money.

We got the name of a lawyer who does this from our friends George and Azita whose son Clayton used to have seizures and is doing so well with the stem cell treatments.

When we met David (the lawyer) we discovered that his daughter Bella also has a seizure disorder and that they had been to the DR twice for injections. Feeling discouraged that her progress was not what they wanted after these injections, they chose to do a 3rd injection in Tijuana. While it's cheaper and much closer to home, the stem cells are older than 12 weeks, thus they could have less potency. This is why we haven't gone there.

Then, on this trip to the DR, we were boarding the plane to go home and Dr. Rader introduced me a man in a baseball cap who looked very familiar. It was David. I had seen him in a suit previously and in my home, not in a foreign country dressed for travel. I finally met Bella, who is a lovely girl who lives up to her name.

In an email exchange, I found out why David and his wife decided to bring Bella back to Dr. Rader and the DR.

"Her progress has been significant--more behaviorally than anything else, but she has progressed in many different ways. Isabella had some test results in the past that showed she could not break down/digest fats properly, and she also had levels of toxic metals that were off the chart. The first two treatments in Dominican Republic we thought didn'’t do anything because we were only looking for the seizures to stop, but we later found out, from a second round of toxic metals tests done after those 2 treatments, that the cells went to assisting her internally in her digestion and also in the natural elimination of her toxic metals. Her tests showed that she was breaking down fats now, and the metals were well within the normal limits. The doctor had never seen 2 test results so different before, especially when nothing else had been done in the interim to address it.

I think the word that best describes her now is that she is maturing into her age nicely, and steadily. The seizures have definitely decreased too, in number and severity. I am looking forward to the day she has a typical EEG.

If you have not seen much yet, don'’t fret. Believe that the cells know where to go first, where they are needed most. It will, soon after that, be a snowball effect. It will seem like his 4th or 5th treatments did the trick, when in reality, the first 3 were 'prepping' him for healing from the next treatments."

These words were very encouraging to me and Aaron. We're already seeing some subtle changes. Soren is more expressive. But we want the big stuff. Crawling, sitting, walking, talking. All those things typical kids do. But as David said, what needs to be done is being done first. The other stuff will follow when those repairs have been done.

Good to hear. And I'm trying my best not to fret.

Amy

Christmas Concussion

Well, not really. But not for lack of trying!

We decided to do something different this Christmas. We wanted to have a little holiday--just the four of us. Not a trip connected with a medical treatment. Just something relaxing, rejuvenating. So we made plans to go to one of our favorite places--Santa Barbara.

Aaron made reservations at our favorite Fess Parker Doubletree. Moira loves the chocolate chip cookies they provide. Mo, Aaron, and I love the hot tub. We hoped Soren would enjoy it too.

So, Christmas morning, we opened gifts. We had a leisurely morning eating breakfast, cleaning ourselves and our kids up, eating lunch, packing up. We headed out around 2:30 and made it to Santa Barbara quite easily. Things were going smoothly. We should have known better for the storm was brewing.

We checked into our ground floor, wheelchair accessible, pool adjacent room. First hitch. Moira's bag was missing. As in, we forgot to pack it. Oops! No worries, right? Mo and I headed off to the gift shop and got her a new swim suit and a couple new T-shirts--for sleeping and for the next day. With two new toothbrushes in hand for the kids, we were set!

Back in the room, we all changed into our suits (Mo in her new one--a perfect fit, no less). The sun was setting. Families who were at the pool when we rolled our luggage by were now mostly gone, getting ready for Christmas dinner. One last mom was left drying off her sons.

Mo got into the hot tub. Aaron stood by on the side while I, as I've done many times, picked up Soren and headed for the steps. There's a hand rail there to hold onto, just in case. I held it. I put my foot down on the first step. My foot slipped. I tensed my arm to prevent Soren and I from falling. But having stepped down and with my short stature, the distance to the side of the hot tub was also short.

THWACK!!!! I heard Soren's head hit. I screamed. Aaron grabbed Soren and cradled him as Soren started to scream. Aaron held Soren against his body where his head hit. We were both fearful of seeing the wound. The mom and her sons who had lingered had fled from the screams of terror.

Finally, when Soren was more calm, Aaron moved Soren so we could see. It was a forehead hit, which we knew from our time of Moira learning to walk, was one of the strongest parts of the head. Poor Mo's forehead was covered in goose eggs back then. We feared other parents would suspect abuse. Really, she just had poor footing on our screwy backyard bricks.

Soren's wound was red, a bit scratched. We feared it would swell to an awful purple. He dangled his foot in the hot tub. He seemed happy to not be disturbed. A man from the hotel wandered by. Asked if Soren was sleeping. I explained the situation--the slip, the fall, the thwack. He happened to be a security officer and sat down to take a report. He was very kind and we were happy to oblige, giving our information. Within the information he asked, "Does he have any disabilities?" Um, well, yes, he's physically disabled. Uncomfortable pause.

Hospital information was given, in case we needed it. I should mention here that we have a rule--NO HOSPITALS ON CHRISTMAS.

Now, usually, folks don't need to make this an actual rule. It's kind of understood, right? But 2 Christmases ago, Soren actually almost landed in the hospital. I can't remember clearly, but I think it was a few days before Christmas that Aaron and I ended up in the emergency room with the boy. We made it through Christmas that year but then Soren ended up admitted in the hospital with aspiration pneumonia (he had inhaled milk into his lungs) for New Years! He was stuck at Huntington in Pasadena (home of the Rose Parade) two days before and into New Year's Day. If you don't know Huntington, to get there, you actually have to cross the parade route. NOT a good place to have your kid stuck in the hospital!!!!!

So this is where our rule came from. Fortunately, we were able to stick with it. After Soren had calmed, I took him back to the room to make sure he stayed awake. Once I got him out of his wet clothes, he was happy as a clam. Kicking, smiling, and pooping. Three times for Pete's sake! And not a hint of concussion.

He ate well, drank well, pooped well, and frankly, had a hard time going to sleep. Since we'd forgotten Mo's stuff, we had forgotten her favorite blanket, Bobby. So Aaron slept with Mo while I slept with Soren. I think I passed out before him, the stinker (literally).

So, that was our "Merry Christmas." Teaching us, don't ever get too set in your plans, 'cause life will come in bite you in the ass. But all things considered, it wasn't a bite. Only a nibble. Our boy is fine. Our girl had fun in the hot tub. And that always makes things more merry.

Still, we're hoping for an uneventful New Year. We're staying home, spray-dying Mo's hair. Maybe Soren's too. Heck, maybe we'll do ours as well. Just no hot tubs.

Amy

Getting Treatment

People often ask about how long this whole treatment takes. Is Soren in the hospital for days? What it's like?

Well, I was there the whole time. They put an IV into his arm and blocked his elbow so he wouldn't bend it. They flush it with saline for about 30 minutes or so to make sure the needle is in his vein. Then they come in and inject one round of the stem cells into to the IV.

Then he gets the 2nd round of stem cells which consists of 2 shots in each thigh.

Saline is flushed through the IV line for a while. I spent most of my time during the whole procedure making sure Soren didn't move his arm (he kept wanting to throw it up in the air). So my body was across him through most of the afternoon to prevent him from moving. While I did this, I watched Sunset Boulevard on our portable DVD player (you can even see it on his bed actually paused on the movie!). Thank goodness for that thing!

The whole process takes about 3 hours with prep, treatment, and post.

Then we go back to the hotel. A rather easy treatment in a distant land.

Amy

Navigating Seizures

So, Soren has had pretty good seizure control for a while. But, as I've written earlier, he will have breakthrough seizures. Whenever this happens, we freak out, watch to see how many he has during that day, and then call the pediatric neurologist on call to get the okay to increase his meds.

Well, now we are starting to finally catch on to when he has these breakthroughs. We knew he would have them during growth-spurts. Next we realized that PRIOR to any indications of illness (stuff nose, runny nose, cough), he has seizures.

But then there were times when he wasn't growing or getting sick but was seizing. This is during travel.

Think of how stressed and exhausted you get during travel. That stress kind of breaks down your defenses. Some people get sick when their defenses are down. Soren has seizures.

So, in hindsight, the seizures Soren had in Hawaii were probably due to exhaustion from travel. We had just come from visiting Aaron's folks in Washington, which was a big trip. Then we continued on to Lanai. I know I was beat, so Soren must have been too.

Next when we went to my sister's for Thanksgiving, Soren had a seizure (granted just one) on Thanksgiving Day. But, again, it was a break in his schedule, a LONG drive, and a lot of hubbub, which is overwhelming to us all.

Finally, on our recent DR trip, Soren had a seizure on the second leg of our journey, from Miami to La Romana. And then he had a bunch of seizures in the days while we were in the DR.

The nice thing (if there can be such a thing) for me was that I had finally caught on to this pattern. So I was not as stressed about him seizing. I didn't try to call the doctor. I didn't increase his medicine. I just watched and waited to see how Soren did once he got home.

And, you know what? He's been great! Not one seizures since we've been back. He's been happy, kicking, giggling. I think he's just really happy to be back home.

Amy