I'm working on pictures, but until I get them up. Here's the scoop:
Kamryn's 1st birthday was lots of fun. As distorted as my girls' Christmas perceptions will be, Kamryn is starting out the same way with her birthday. She had three celebrations for b-day #1. The first was the day after Audra's wedding, while all of April's side of the family was in town. We had it at Brushy Creek Lake Park in Cedar Park and the weather was fabulous! Lots of friends and family came out to celebrate with us. Unfortunately, Kamryn was not in the mood to party. She cried for a large portion of the party (I can only guess it was because she was overtired from the big weekend up to that point) but she perked up very quickly when great-grandmama gave her a bite of cake. She enjoyed diving in!
Round 2 was at our house on her actual birthday. Nothing big, but she did get to have a cupcake and Kenedy singing to her. That's about it, but fun none the less.
Round 3 was in San Marcos last weekend with Scott's family. It was a big hoopla, as is anything with his family. She was in a much better mood for this party, though. Lots of fun!
Kamryn also had her 1-year pediatrician appt and neurology appointment recently. Her pedi appt went well. He said that she looked great. Her weight has started to slow down a little bit. At 24 lb 11 oz she's only in the 94th percentile now... ; ) She is about 31 inches and in 95th for height and 75th percentile for head circumference. He says that peanut looks great.
As far as neurology, she is officially off of the phenobarbital, after a very slow weaning process. She will stay on the trileptol for 6 more months before we take her off of those, just to be safe. Things are going well there! They did next to nothing at the appointment except get her height, weight and set her next appointment. They think she's looking good as well.
Kenedy is doing well. Still loving school and being the crazy 3-year old that she is. She is a laugh a minute.
Tuesday, May 5, 2009
Sunday, March 1, 2009
Princess Tea Party
Kenedy and I spent Saturday at Belle's Bridal Shower, a princess tea party, written and put on by members of the CPHS Choir. Ten princess were embedded into this dinner-and-a-show type event. There were 10 princesses in attendance of the bridal shower, each played by a different member of the choir. Kenedy had fun and I took one for the team. Here are some pictures and video from the event...
All of the princesses
Belle
Kenedy with her tea party snacks
waiting for Belle's Bridal Shower to begin
Princess Aurora
Belle
Meg
All of the princesses 
Belle 
Kenedy with her tea party snacks
waiting for Belle's Bridal Shower to begin
Cinderella
Princess Aurora
Belle
MegSleeping Beauty singing her signature song.
Tuesday, February 10, 2009
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...
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.
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
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.
Monday, January 26, 2009
Curent Events
Sorry it's been so long since I updated...life just somehow seems to get in the way (as does facebook!) Here's a status check on our girls:
Kamryn:
We went to the cardiologist a couple of weeks ago to check on Kamryn's aortic arch and the ductis that had not closed yet. The EKG showed no narrowing of the arch. In fact, he said that if you hadn't have seen it earlier then you wouldn't have even known that there was an issue. The ductis had not closed however. It appears to be very tiny however, and does not appear to be causing much of a disturbance, as he could not hear a murmur. At this point, we're just going to be monitoring annually. All's good on that front.
Last week we met with a representative from ECI (Early Childhood Intervention). ECI is a governmental program that monitors and services to children who have conditions that could put them at risk for developmental delays. We had an initial screening and will have a full evaluation in early February. To be eligible for services from a physical, occupational, or speech therapist, the child must be at least 2 months behind in milestones. Even if she does not qualify for services, they will put her in the follow along system, where we fill out questionnaires every couple of months and the track her progress in a database. Should any red flags arise from the questionnaire, she would be re-evaluated for services.
Kamryn's 9 month check-up is this week and her neurologist appointment is in a couple of weeks. We are looking forward to developing a plan to ween her off of the phenobarbital at that appointment.
She is doing well. She gets up on her knees and forearms, rocks back and forth, and then goes splat...no crawling for us yet. She has started to be a little more vocal in the last few days, babbling up a storm. She sits up and can stay there unassisted, but can't get herself into that position herself, although she is pretty good at getting herself down. She is still quite the smiler and make for a great photo!
Kenedy:
This girl is a laugh a minute... she has gone to spelling her name K-E-N-E-D-Y-dot-com. I think we're in for some interesting times. She still absolutely loves school and holds class with her pretend friends in the living room. We frequently hear things like, "This is how you play Memory, you...." "No, McKenna, not like that. You do it like this..." "Is that a good choice, Sage?"
While she is quite a riot to have around, she can definitely be a pill. The girl has a bit of a stubborn streak, and has a memory like an elephant, so if you contradict yourself at anytime, she's going to point it out!
We have much to be grateful for and are trying to enjoy every minute. I will hopefully have new pictures up soon!
Kamryn:
We went to the cardiologist a couple of weeks ago to check on Kamryn's aortic arch and the ductis that had not closed yet. The EKG showed no narrowing of the arch. In fact, he said that if you hadn't have seen it earlier then you wouldn't have even known that there was an issue. The ductis had not closed however. It appears to be very tiny however, and does not appear to be causing much of a disturbance, as he could not hear a murmur. At this point, we're just going to be monitoring annually. All's good on that front.
Last week we met with a representative from ECI (Early Childhood Intervention). ECI is a governmental program that monitors and services to children who have conditions that could put them at risk for developmental delays. We had an initial screening and will have a full evaluation in early February. To be eligible for services from a physical, occupational, or speech therapist, the child must be at least 2 months behind in milestones. Even if she does not qualify for services, they will put her in the follow along system, where we fill out questionnaires every couple of months and the track her progress in a database. Should any red flags arise from the questionnaire, she would be re-evaluated for services.
Kamryn's 9 month check-up is this week and her neurologist appointment is in a couple of weeks. We are looking forward to developing a plan to ween her off of the phenobarbital at that appointment.
She is doing well. She gets up on her knees and forearms, rocks back and forth, and then goes splat...no crawling for us yet. She has started to be a little more vocal in the last few days, babbling up a storm. She sits up and can stay there unassisted, but can't get herself into that position herself, although she is pretty good at getting herself down. She is still quite the smiler and make for a great photo!
Kenedy:
This girl is a laugh a minute... she has gone to spelling her name K-E-N-E-D-Y-dot-com. I think we're in for some interesting times. She still absolutely loves school and holds class with her pretend friends in the living room. We frequently hear things like, "This is how you play Memory, you...." "No, McKenna, not like that. You do it like this..." "Is that a good choice, Sage?"
While she is quite a riot to have around, she can definitely be a pill. The girl has a bit of a stubborn streak, and has a memory like an elephant, so if you contradict yourself at anytime, she's going to point it out!
We have much to be grateful for and are trying to enjoy every minute. I will hopefully have new pictures up soon!
Sunday, January 4, 2009
Holiday Hubbub
Hope everyone had a wonderful holiday season!
We're home and recooperating from all of our excursions. Can't wait for school to start tomorrow!
Here the low down on the last few weeks...
First of all, Kamryn is still seizure-free. (Note the counter I've added to the blog.) It's been so long that when someone asked me how long, I really didn't know anymore. Now we can all know (if you want to...)
As for our holidays, we spent Dec. 19 - 28 in Lubbock and the surrounding area, doing the family holiday bit. We have six different Christmas's to celebrate up there, so we always stay plenty busy. Pictures are in the slide show...
The girls had a big time with all of the grandparents, great grandparents, aunts, uncles, cousins, and whatnots. There wasn't any snow this year, but there definitely was plenty of stuff blowing in the wind...and that stuff was dirt. The whole time we were there it was either in the 20's with sunshine or in the 60's with dirt and wind... Oh to be back home again...
I'm not feeling a very detailed account of our time coming out today, but suffice it to say that there was cookie baking, Santa hunting, chicken collecting, dirt blowing, present opening, scooter riding, pickle finding, girly karaoking, multiple feasting, baby playing, friends gabbing, paint fume breathing, jalapeno eating, and germ avoiding. All in all, a heck of a time!
New Year's Eve was nice as well. We got to catch up with our friends, the Kirks. Kenedy and Sarah played like they had never played before, Kamryn swapped a little spit with Jake, Sally and I caught up, Jody and Scott got back to their boyish ways. A fun time was had by all. (Just wish it could happen more often.)
We're home and recooperating from all of our excursions. Can't wait for school to start tomorrow!
Here the low down on the last few weeks...
First of all, Kamryn is still seizure-free. (Note the counter I've added to the blog.) It's been so long that when someone asked me how long, I really didn't know anymore. Now we can all know (if you want to...)
As for our holidays, we spent Dec. 19 - 28 in Lubbock and the surrounding area, doing the family holiday bit. We have six different Christmas's to celebrate up there, so we always stay plenty busy. Pictures are in the slide show...
The girls had a big time with all of the grandparents, great grandparents, aunts, uncles, cousins, and whatnots. There wasn't any snow this year, but there definitely was plenty of stuff blowing in the wind...and that stuff was dirt. The whole time we were there it was either in the 20's with sunshine or in the 60's with dirt and wind... Oh to be back home again...
I'm not feeling a very detailed account of our time coming out today, but suffice it to say that there was cookie baking, Santa hunting, chicken collecting, dirt blowing, present opening, scooter riding, pickle finding, girly karaoking, multiple feasting, baby playing, friends gabbing, paint fume breathing, jalapeno eating, and germ avoiding. All in all, a heck of a time!
New Year's Eve was nice as well. We got to catch up with our friends, the Kirks. Kenedy and Sarah played like they had never played before, Kamryn swapped a little spit with Jake, Sally and I caught up, Jody and Scott got back to their boyish ways. A fun time was had by all. (Just wish it could happen more often.)
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