Update - Sunday August 31, 2008

As most of you know Kamryn had a seizure on Thursday night. The doctor called Friday and was a little perplexed. Kamryn is taking 25% more medicine than a baby that is 18lbs. And since she is not 18lbs he is not sure why she is talking so much. She is not showing any side effects so he is not concerned about that. It is more about the battle to keep her levels up. He ultimately decided that we would mover her off the liquid medicine and put her on a pill. So now she take 4 pills a day that we dilute in her bottles.

I would say that is all but no, Kamryn had a seizure this afternoon. She had one about 2pm, but we gave her the medication and she has not had one since. It seems that she is not feeling real good. She has had a cough for the last day or so and she has been extremely sleepy today. So we are hoping that is just a combination of medicine and not felling well.

As always we thank everyone for their support and love. Please keep us in your prayers

Kenedy's New Bike

Since Kenedy recently got a belated gift card from Uncle & fam, we took it to Wal-Mart to pick a new toy. Here are some pics of Kenedy on her new big girl bike. She likes it but is not as good at keeping the pedals going as she was with the tricycle. She's an even bigger fan of the horn and basket that we put on it!

Kenedy is doing well at school. She really enjoys it, which I imagined she would. She's finally starting to be a little more forthcoming with details of her day, but ocassionaly we still get the "nothing" and "nobody" answers. Grrr! Her only issue with school is the automatic flushing toilets. She is definitely not a fan of those, prior bad experiences I guess. The aid in her class is going with the her and covering up the sensor with her had everytime Kenedy needs to go potty. Bless her heart! They've got some kind of velcro contraption planned so that Kenedy can start going in on her own. : )

On a less happy note, Kamryn had a seizure this evening, around 6:30 pm. We gave her a loading dose and are right now waiting on the doc to decide if we want to keep the meds the same otherwise. He also mentioned that it may be time to consider a different type of medication too. We'll see, as this was all via text message... She's doing better so far, so assume all is well, unless I post otherwise later on.

Kenedy's First Day of School and Kamryn Info

Today was Kenedy's first day of "school." We've been talking it up for the last week, hoping that it would de-emphasize the not going to Leslie's part. She did really well. Hardly took the time to kiss Kamryn and I good bye! When I went to pick her back up, her teacher said that she had a really good day. She did have a potty accident though. Apparently, she went to tell the teacher she needed to go to the bathroom, but when she finally got through explaining, it was too late. And that is why they ask to us to send a change of clothes... Hopefully this was just a first day thing, now that she has her bearings and knows where the bathrooms are, we won't see anymore accidents. We'll continue to send a change of clothes, just in case... She said she had fun and liked her teachers and new friends. So far so good. Here are some pictures of this morning.

Eating breakfast after her bath.

She is excited about school!

Toting her lunch box.

In the school parking lot, backpack and all.

Tromping down the hall.

In front of her locker!

Stacking blocks in the classroom. But oops!, this is the wrong classroom!



Bonked her head on her new locker, in the right classroom.

All better now...

FYI- Kamryn had a seizure last night (Sunday, 7:30pm, right before we gave her the nightly dose of phenobarb), and of course we couldn't get ahold of the neurologist. We gave her an extra dose of phenobarb, guessing that that would be what the neurologist would do. It held her all night and she was a happy girl this morning before we took her to Leslie's. We told Leslie about what was going on and she did well all day. Scott finally got ahold of the neurologist (actually his nurse) late in the morning and her medicine has now been shifted to 5 ml of phenobarb 3x/day, instead of 6ml 2x/day. She'll basically get an extra 3ml a day and will not be spread out so far apart. It will now be on the same schedule as her Keppra, which is nice for us. Also, when talking to the nurse, we found out that her phenobarb level that was taken Friday morning was a 20.5, low for her. Knowing that she is now in the 90's percentile-wise, it's all coming together. She hasn't had another seizure since the one last night. Hopefully this shift in medicine will help for a while. Our next pediatrician appointment is in a few weeks. It will be interesting to see what she weighs by then.
Here are some pictures of Kamryn just being cute in her red and white gingham lady bug outfit. Sorry about the turned pictures, they were all right when I put them on my computer.

telling us all about it...

Updates...

Kamryn News:

We're at 2 weeks since Kamryn's last seizure. Hooray! Yesterday, she had blood drawn at the neurologists office to check her phenobarb levels after getting her back stable. This will give us a good idea of what level is good for her now. We don't have the number yet, but we'll let you know when we get it back. After her trip to get her blood drawn, she went to cardiologist. The did an EKG checked the blood pressure of all extremities. She still has a slight murmmer, but it much less pronounced than last time we were there. He did not do an echocardiogram to check on the narrowing aortic arch and valve that we were watching to see if it closed. Since her blood pressure was good at her feet still, the valve and narrowing did not seem to be causing a problem. She has a follow up in 6 months, where they will probably do both the echo and EKG. All looked well though... The doc seemed rather surprised with her size and when Scott told him that she was only in the 50th percentile about a month ago at the pediatrician's office, he looked very skeptical. He took her measurments (16 lb, 6 oz and 25 1/2 inches) and said that she is in the 90s as far as percentiles. Quite a change from a month and a half ago. Definitely could explain outgrowing the dose! All is good with that little one, she took the appointments well, didn't hardly cry at either. I guess when you get poked and prodded as much as she has, you tend to get used to it. PS- Her hair is continuing to come out and will likely be near bald by the time her dedication comes around on September 14.

Kenedy Update:

Yesterday was Kenedy's last day at Leslie's house. Leslie is the lady who has kept her during the day since she was 6 weeks old. She'll start "school" on Monday. We've bought her a big girl backpack, lunch box, napmat, the whole nine yards... She seems pretty excited about it. I hope she continues to be once she realizes that Kamryn is still going to Leslie's and she is not. We've been talking it up with her (and so has Leslie) and she is pretty excited. I'll let you know how she actually does next week.

Kenedy and Leslie

Update - Thursday, August7

Still no seizures since Saturday. : )

We had a neurology appointment today. Not much new, especially since we were just there last Friday with the recent wave of seizures. We didn't run any tests, didn't change medicines, just sat and chatted with the doc.

She obviously isn't outgrowing them just yet, so we'll continue on the medicine and doses that we've most recently updated. We didn't have her blood drawn for a phenobarb level today because the it would probably be artificially high, due to the recent loading doses. Next week we'll take her back and get a level done on her to see what number she is at and know what is works for her.

Ideally, this appointment would have been to talk about weaning her off of medicine, had she not had any seizures since our last appointment, obviously that was a no go. We set another appointment 3 months out under the same hope.

Update - Sunday, August 3

Today was a much better day for Kamryn. No seizures since yesterday's episode at 6:15pm. She has been plenty awake and alert today. She smiling, laughing, and cooing at me all the way home from San Marcos. (I was sitting in the back seat with the girls. It is just easier to put Wylee in the front to avoid any possible drama between the excited dog and two little girls!)

Otherwise, the trip to San Marcos went well. Jody had fun for his birthday. Most of the group floated the extremely low and slow Guadalupe on Saturday, but had fun nonetheless. Kenedy got to spend the weekend with her best friend Sarah, while Sally and I got to catch up since their move to San Antonio.

Sorry no pics from this trip. Way to much hustle and bustle this weekend with the million and a half people in and out of Jan's house at any given moment. Not to mention all of Kamryn's drama and Kenedy and Sarah running wild. : )
Maybe next time...

Not Done Yet

Well, we're still not quite through with this round...

After a long fussy and restless day, Kamryn had a seizure at about 6:15 pm. I called the Dr. Kane's cell phone. Since we knew from yesterday's bloodwork that it is likely just that her phenobarb count is not quite up where we need it, he didn't feel like we needed to go to the hospital. He thinks we just haven't found the right maintenance dose yet, so he suggested increasing her phenobarb from 5 ml to 6ml and giving her one extra dose today as a booster. She got that at about 6:30, and has been sleeping most of the rest of the evening.

Hopefully this will be the amount that will work for her. We have the appointment next week and we'll likely draw blood again to check her phenobarb levels and see how these loading doses and increased maintenance doses are working for her.

Another Tough Day

Kamryn slept well last night and woke up bright-eyed and bushy-tailed this morning. I was thinking that the loading dose yesterday had done the trick. But alas, I was wrong.

At 11:30 am Kamryn had a seizure and when I contacted the neurologist (I actually talked to him, not just his nurse!) he suggested coming to have her phenobarb levels taken. So I got us all dressed, headed out, and dropped Kenedy off at Scott's office on the way.

At the neurologist's office/lab, the pulled blood, which Kamryn didn't much care for. However, they got it on the first stick, on the inside of her elbow. Woohoo! No more head shaving!

I figured I'd have her weight checked while I was there to get an idea of how much she's grown since our last bout of seizures. The lab didn't have a scale, so the directed me back to the pediatric practice, who directed me to the actual neurologists office, who made me wait for a nurse, just to get her weighed. All I needed was a scale, I know how to use it; no help required.

While we were in the waiting room at the neurologist waiting for the nurse to come out and help me get her weighed, she had a seizure (around 2 pm). I told the receptionist, who said she'd go get the nurse. It was the nurse and the neurologist that came out to the waiting room for the last third of her seizure. He said I could just go a head and come back so we could talk after he finished with this last patient. (We weren't scheduled to have an appt with him until next week.)

We talked and decided to go ahead and give her another loading dose of phenobarb today, and keep her regular dose at the 5 ml we had changed to to yesterday. He suspected that we had likely just outgrown her dosage. Of course, we didn't have the labs back to confirm that, but it has been the case historically. If for some reason she doesn't respond to this dose, we may have to visit the hospital this weekend.

She got the loading dose at around 3 pm at home, and we packed up and headed out to San Marcos for Jody's birthday. I called the doc around 5pm on the way to check on the bloodwork and he said that her phenobarb level was at a 24, (her happy number is in the mid 30s) and that was after the loading dose we gave her yesterday. So that likely supports our theory that she is just outgrowing the dose and metabolizing it faster. We'll talk in more detail at her appt next Thursday. She hasn't had a seizure since.

Hopefully this is the last you'll hear from me for a while...