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