Kamryn's Neurology Appointment

So, we went to see the neurologist Tuesday morning. They performed an EEG and then we had an appointment with our doctor. In the EEG, the technician takes 20+ wires/electrodes and hand places them all over the head with some kind of goopy adhesive-type material, like a super thick hair gel. It takes forever to get them all on, especially with a squirmy 9 month old. We finally got them all attached after dealing with various rogue wires that came off and Kamryn grabbed, taped them all together and onto her back (to get them away from her hands). That in and of itself was an act of congress. Once hooked up, you have to get 25 minutes of data from the electrodes, a long time, but it almost takes the same amount of time just to get hooked up. Kamyrn, bless her heart, was 6 minutes into the session, when she stepped on the wires bounced up and down and pulled about half of them off of her sweet head! So we had to reattach and restart the whole process. Grrr... An hour and a half later, we finally finished our 25 minute EEG, strobe lights and all, and got to progress to the actual doctor to get the results and develop a plan of action.

However, we didn't meet with the doctor, we met with his nurse practitioner (which is kind of better than the neurologist...) She said the EEG looked good...there were high activity spots but the technician said that was when she was being squirmy. So all was good there, no signs of seizure activity in the brain during that 25 minutes. Yea!

Since we're a long way from our last seizure, the doctors are ready to get her off of the phenobarbital. She takes 4 pills a day right now. Each month we'll give her one less pill a day. So, essentially, it will take 4 months to get her off of all of the phenobarb. She is also taking the Trileptol with her phenobarb and will continue to take that medicine. Should she have any breakthrough seizures, we would just increase the amount of Trileptol and continue to back off of the phenobarb. It is going to be a very slow process, but the neurologists want to be careful, because it is such a powerful drug and she's been on it for so long (since birth) that if we were to come off to quickly she would experience a withdrawl.

If all goes well with the phenobarb weaning, a few months later we'll look at weaning off of the Trileptol, but that would be a ways off...

Summary... Things look good and we're backing off the meds. Hopefully with the decrease in drugs and the additional developmental support from ECI, Kamryn will be back on track in no time.

Here are a couple pics of our morning...

Combing the EEG gel-goop out of her hair.

Hooked up to the wires of the EEG. Every white spot on her head is a different electrode. You can't see the wires because they're all running behind her head and being held together there.

ECI Evaluation

Thanks to some friends and family who have share information about the program, our family has joined the ECI program. ECI stands for Early Childhood Intervention. It is a state program for children 0-3 years with, or at-risk of, developmental delays. Basically, the program exists to help evaluate developmental progress and provide services, such as speech, occupational, and physical therapy, nutrition, medical, vision, hearing services, etc. There is little to no cost involved if your child qualifies. To qualify, a child has to be at least 2 months delayed or have a diagnosed medical condition that has or could lead to delays. Kamyrn's "seizure disorder," as they call it, automatically qualifies her for services.

Monday afternoon, our service coordinator Judy came out to the house with a nurse to do an assessment on Kamryn to see what services she might need. (If no services are needed at the time, they have a follow along, monitoring program). They asked Scott and I questions about what she does and doesn't do, routines, nutrition, health, etc. and watched her play and interacted with her. The assessment has five components: motor skills, communication, social interaction, self-help, and cognitive development. The results of the assessment will classify Kamryn at a certain age developmentally. All of this is done by comparing what she is and isn't doing to common developmental milestones. All babies vary in these, so being 1 month ahead or behind isn't a big deal; that's why they need to show at least a 2 month delay to qualify for services.

Kamryn scored at 9 months (her true age) on the self-help and cognitive areas. Nothing in those really seem to be a problem. In motor skills and communication she was at 7 months and in social interaction, she was at 6 months. The main motor issues were that she doesn't crawl, pull-up, get herself into and out of sitting position on her own. A occupational therapist's consultation was ordered. Communication was because she doesn't mimick sounds and babble with clear sylables/consonents. The social one was what I didn't think about her being low in...she is the smiling-est, happiest baby on the block and doesn't care who is holding her. However, the fact that she doesn't laugh, doesn't imitate sound or movement, and doesn't drop things intentionally, put her behind here. Sounds like a lot, but every time you turn around she is doing something new. She's about to have the waving thing down, as I type...

So...to continue the process... because of her delays, a plan/goals were developed for her progress. Judy will come to the house once a week to work with Kamryn and teach us ways to work with Kamryn to help overcome some of our slow spots and depending on what the occupational therapist says when they come do an eval, we may be getting some of their time too.
It seems like a lot, but the nurse and the service coordinator were extremely optimistic and don't seem overly concerned. Normally, goals are reassessed every 6 months or so. They expect to need to write new ones for Kamryn in 3 months.

Our first non-evaluation visit is next Thursday. I'll try to remember to post how it goes...

Nacogdoches Trip

Spent the weekend in Nacagdoches with my brother and the family for Nathan's belated birthday party and Ryan's baptism. Everyone had fun. Kenedy loved hanging out with Nathan, and Kamryn and Ryan pretty much did their own thing... : )
Here are some pictures:

Kenedy and Nathan taking turns playing a game on Scott's phone.

One of many lackluster pictures of the four of them together. When you are trying to get 4 kids under the age of 5 in the same picture, you just have to take what you can get. This was the best of about 15 pictures attempted...

Ryan's baptism.

Kenedy loved the party at the gymnastics place...

Nathan and his birthday gang

Having fun under parachute the adults were shaking.

Kamryn liked the ribbon batons

Nathan was Limbo lineleader.