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

Microcephaly Update

I wrote earlier about my trip to the geneticist and the whole CDKL5 gene. Part of that was the geneticist commenting on Soren's drop off in head growth and the possibility of microcephaly. After looking it up on the net, I totally freaked out. In case you were like me, let me put your fears at ease.

Soren and I went to his neurologist and I mentioned the lack of head growth. He looked at me unimpressed and asked, "How old is he?" "Three," I said. "Everyone's head growth drops off at 3. Otherwise we'd have huge heads."

WHEW! Did that make me feel better. He said that Soren's head growth is on track, which means that his brain growth is on track.

Update on the CDKL5 testing, we are going to have blood drawn this month to test for this since we just got insurance approval. I'll keep you posted.

Amy

Back from the DR

Hello All!

We have returned! Soren's treatment went very well. He slept a lot afterwards and had quite an appetite when he was awake. Now we watch and wait and hope for great things!

As for our trip, it went well overall, though--as with any trip--not everything went as planned. The biggest hitch was that I got food poisoning Friday night. Thus, our day of fun on the beach was spent by Aaron and Moira while Soren and I hung out in the room. Ugh. Next time, I'm staying away from the shrimp!

We met lots of lovely families who were also there for treatments. I spoke with a bunch of first timers--a woman who had had a stroke, parents of a boy with CP. Then there were many folks who, like us, were there for their a follow-up visit. Clayton was there--looking great as ever. It was actually nice to hang out at the hotel (when I wasn't sick) with these friends who all understood each others situations.

I will keep you updated on progress and post pictures once we have them developed (we had our old-fashioned camera with us this trip).

Thanks for your good thoughts! Love to you all!

Amy

DR Trippin'

We are off to the DR on Wednesday! WAHOOOOOOOO!

It's been a long-time comin' and it's finally here. I'm in a bit of a scramble to repack our bags (we got back yesterday from my sister's house in Scottsdale where we went for Thanksgiving). Currently I'm procrastinating and writing this post instead of folding newly washed clothes.

Actually, I just finished confirming all of our reservations. When I called the hotel at the DR, the man at the reservation desk asked if it was my first time at their hotel--which it is. We decided to switch after having a mediocre hotel experience on our last trip. When I told him it was my first time he said, in his great Spanish accent, "Come for the fun! Come for the paradise!" I was so thrown by this I had to confirm this is actually what he said. It was. I didn't have the heart to tell him that I was coming for the stem cell injections since he was so excited about the fun and the paradise.

But we hope to get a day of that in as well. One of the nice things about this hotel is that it's actually ON the beach. The last place we stayed, we had to load the kids into a golf cart and drive to the beach. This is a bit of a challenge with Soren and his big old stroller. The new hotel is also more wheelchair accessible, according to all my DR-traveling friends in the know. That will be quite a nice change from all the stairs we had to maneuver on our last trip.

We'll be flying out of LAX Wednesday into Miami. We'll spend the night at an airport hotel. Then Thursday we'll continue on to La Romana in the DR. It's really the best and most human way to do it with two kids.

Friday Soren gets his injection. Saturday we get to enjoy "the fun and the paradise." A nice thing is that the DR's air temperature and water temperature are both VERY warm. Soren LOVES that. And their beach is protected by a reef, so the waters are super mellow. At least Soren will get a little treat after getting juiced up.

Then we get back on the plane Sunday to go to Miami. And Monday we'll return to L.A. Rather whirlwind. But totally worth it! We're really excited about what this treatment could bring. I'll take pictures and write an update when we get back. Wish us luck!

Amy

Giving Thanks

As Thanksgiving is fast approaching, I want to thank you all for your support during our challenges with Soren.

So many people have helped in so many ways--giving a theater space, doing a performance, coming to a performance, giving socks, throwing socks, selling socks, listening to our troubles, reading about our troubles, donating to our cause, running for our cause, sending an email of love, donating cookies, giving of your time, offering a much needed vacation, donating programs, donating flyers, donating art, selling art, calling to say hello.

Thank you all for giving of yourselves in ways I could never imagine. For not judging that which cannot be judged. And for caring.

Thank you for helping our boy. Thanks for giving. Thank you.

Amy

Calabasas Classic 5K/10K Run

Last Saturday I ran my first 5K! Amazing, shocking, but true!

I ran it in support of The Talbert Family Foundation, which has given so much to Soren. Because of them, Soren can get tax-deductible donations. They also gave us a $5,000 honorarium when he became a TFF kid. And when we raised our first $5,000, they matched it.

So I trained (if you know me, you know this is quite a feat) and ran for the foundation and for Soren.

And I'm lucky enough to have some athletic friends who came to support Soren as well! My friend Keith actually ran the 5K with me, which was fantastic. It was a good, tough course and it was great to have a friend beside me.

Then my longtime college friend Neil ran the 10K (and did quite well, I might add). Aaron's former coworker Mona and her friend also ran the 10K. Amazing!

Then I was also lucky enough to see my friend Cindy who was voluteering her time to the Foundation. AND I FINALLY got to meet the lovely Julie Talbert of The Talbert Family Foundation. It was a great day. The event (which was held with much support in Calabasas) was fantastic with an amazing turn out!

Very cool. And now that I know I can do it, I plan to do it again next year!

Amy