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.)
Monday, December 15, 2008
A Star Is Not Born
Here are some videos of the children's Christmas musical at church last weekend, Dec. 6.
Okay, so she hasn't got much stage presence, but come on...she's 3! You'll see her waving at me (I'm sitting in front of the kids), running off of the stage to sit with me, turning random circles, falling off of her step, halfway doing the hand motions for the song muchless the singing the actual song, staring off into space, as well as showing off some butt crack. I laugh every time I watch these (and see something different every time).
She shouldn't be hard to find. Unfortunately for the production, she's on the front row...
Enjoy!
This Little Light of Mine
Having trouble uploading the other videos... hopefully this will do for now...
Sunday, December 7, 2008
A new baby...
In case you are interested, Scott's cousin Kyla had her baby last Wednesday. I think she's got us all beat on the whole birth announcement bit...
http://www.keyetv.com/mediacenter/local.aspx?videoid=21502@keye.dayport.com&navCatId=5
There will be a short commercial intro, but then you can see their announcement via the news story!
Top that!
Welcome to the crazy family Addison Stevenson!
http://www.keyetv.com/mediacenter/local.aspx?videoid=21502@keye.dayport.com&navCatId=5
There will be a short commercial intro, but then you can see their announcement via the news story!
Top that!
Welcome to the crazy family Addison Stevenson!
Monday, November 24, 2008
Rollin', Rollin', Rollin'
Kamryn is rolling from back to front now. Here is the video, as requested...
PS - we're at 11 1/2 weeks....
PS - we're at 11 1/2 weeks....
Friday, November 14, 2008
Updates, We Have Updates...
So much for doing better about posting regularly...
Oops!
Well, here you go. Updates...
Kamryn is doing very well. This week marked her 10th week without a seizure!
She went to the neurologist on Monday. We didn't see our regular neuro., we saw his PA, which was a little wierd. She was great though. We didn't do an EEG, just a chat with the PA (Tasha), and some blood work. They like to get babies off of phenobarb starting around 9 months. The plan is to go back in 3 months, have an EEG to check for evidence of any remaining seizure activity, and come up with a plan for pulling back the phenobarb. If she doesn't have seizures when pulling back, WOOHOO, and if she does, we'll up the other medication she is on, Trileptal. Obviously, we are rooting for the 1st of the two options. We are on a great track to get there. They measured height, weight, head, etc. She is 22 lbs and 28 1/2 inches. Still off the charts for her age.
General info on Kamryn. She is 6 months old and eating solid foods like cereal and vegetables. She is a great baby...very laid back and happy. She grins all of the time. She is finally starting to roll over. She did her first roll on Tuesday night, and another couple tonight. (back to front)
Kenedy is going well. She is still loving school and never wants to leave at the end of the day. She is going to be a part of our church's children's Christmas musical in a couple of weeks. Her first official showbiz debut. : ) Ought to be interesting.
Trying a new way of posting pictures. There should be slideshows of our pre-Halloween pumpkin patch pictures, as well as actual Halloween pics.
Enjoy!
Oops!
Well, here you go. Updates...
Kamryn is doing very well. This week marked her 10th week without a seizure!
She went to the neurologist on Monday. We didn't see our regular neuro., we saw his PA, which was a little wierd. She was great though. We didn't do an EEG, just a chat with the PA (Tasha), and some blood work. They like to get babies off of phenobarb starting around 9 months. The plan is to go back in 3 months, have an EEG to check for evidence of any remaining seizure activity, and come up with a plan for pulling back the phenobarb. If she doesn't have seizures when pulling back, WOOHOO, and if she does, we'll up the other medication she is on, Trileptal. Obviously, we are rooting for the 1st of the two options. We are on a great track to get there. They measured height, weight, head, etc. She is 22 lbs and 28 1/2 inches. Still off the charts for her age.
General info on Kamryn. She is 6 months old and eating solid foods like cereal and vegetables. She is a great baby...very laid back and happy. She grins all of the time. She is finally starting to roll over. She did her first roll on Tuesday night, and another couple tonight. (back to front)
Kenedy is going well. She is still loving school and never wants to leave at the end of the day. She is going to be a part of our church's children's Christmas musical in a couple of weeks. Her first official showbiz debut. : ) Ought to be interesting.
Trying a new way of posting pictures. There should be slideshows of our pre-Halloween pumpkin patch pictures, as well as actual Halloween pics.
Enjoy!
Thursday, October 9, 2008
I'm back already... Back off...
Readers forgive me, for I have sinned. It's been 3 weeks since my last blog.
Alright, alright! Quit harassing me already. I'm blogging, I'm blogging... Here are some updates and pictures since last I posted...
Kamryn...
As of today, she has not had a seizure in 5 weeks. WooHoo! Growing like a weed, but hasn't outgrown this dose. : ) Some of the 6 - 9 month pajamas we just got her are getting too small. We're about to have to break out Kenedy's 12 month clothes box---for the 5 month old! She's having a big old time. She just smiles all of the time. Sleeps beautifully. Is trying to roll over. Started cereal. Tried out carrots and loved them. Got dedicated at church. Drooling like she's trying to get a tooth in, looks like an eye-tooth! Everyday is an adventure. Pics below, videos at the bottom...
Not a huge fan...
Lovin' the carrots though!
Kenedy...
She still loves school. Thank goodness, I suppose. I just hate to be the parent that can't get their kid to leave at the end of the day. : ) Speaking of her school, they've got a fundraiser going on and have even got the 3 year olds hocking the wares! So if you feel the need to support the Giddens Elementary PTA and buy some stuff from Kenedy you can go to the online site (http://www.danielsfundraising.com/store/brochures.php?sID=1507380) and type in her Seller ID, 1507380, and she'll get credit for the sales. She can earn prizes for the number of items she sells. She has her eyes on a set of walkie-talkies...Kenedy is still quite enthralled with her baby sister and wants to help with her often. (a lot of times it is to try to get out of something else). She is also very excited to be a flower girl in Audra's wedding, though she likes to call it a flower princess. She also has decided to be Princess Aurora for Halloween. (Sleeping Beauty for all of you who are out of the know as far as princesses go).
Below are some more recent pictures of her...
Practicing to be a "Flower Princess"
Alright, alright! Quit harassing me already. I'm blogging, I'm blogging... Here are some updates and pictures since last I posted...
Kamryn...
As of today, she has not had a seizure in 5 weeks. WooHoo! Growing like a weed, but hasn't outgrown this dose. : ) Some of the 6 - 9 month pajamas we just got her are getting too small. We're about to have to break out Kenedy's 12 month clothes box---for the 5 month old! She's having a big old time. She just smiles all of the time. Sleeps beautifully. Is trying to roll over. Started cereal. Tried out carrots and loved them. Got dedicated at church. Drooling like she's trying to get a tooth in, looks like an eye-tooth! Everyday is an adventure. Pics below, videos at the bottom...
Hangin' with Hunter
First try with cereal...
Not a huge fan...
Lovin' the carrots though!
Kenedy...
She still loves school. Thank goodness, I suppose. I just hate to be the parent that can't get their kid to leave at the end of the day. : ) Speaking of her school, they've got a fundraiser going on and have even got the 3 year olds hocking the wares! So if you feel the need to support the Giddens Elementary PTA and buy some stuff from Kenedy you can go to the online site (http://www.danielsfundraising.com/store/brochures.php?sID=1507380) and type in her Seller ID, 1507380, and she'll get credit for the sales. She can earn prizes for the number of items she sells. She has her eyes on a set of walkie-talkies...Kenedy is still quite enthralled with her baby sister and wants to help with her often. (a lot of times it is to try to get out of something else). She is also very excited to be a flower girl in Audra's wedding, though she likes to call it a flower princess. She also has decided to be Princess Aurora for Halloween. (Sleeping Beauty for all of you who are out of the know as far as princesses go).
Below are some more recent pictures of her...
Trying on her Halloween costume (just to make sure it fit...)
Notice the cute little bob haircut compared to the raggedy-looking flower girl pics.
Practicing to be a "Flower Princess"
Wylee...
After the round of antibiotics and anti-inflammatories, Wylee's "mass" was no longer red and inflamed. We were waiting for the vet to call us back about the surgery to remove it, and while they were busy not getting back to us, the mass just disappeared. It's like it was never even there. CRAZY! But I'll take it.Trying to get over, but mostly hanging out on the side and pushing around...
First attempt at cereal. She's wasn't a real big fan. She'd rather had her bottle.
First vegetable...Carrots...Doing a lot better with those. If only Kenedy wasn't such a goober! : )
Monday, September 15, 2008
A very busy weekend & Wylee Update
When last we talked, Wylee had been to the vet on Tuesday with a follow up appt scheduled for Thursday. I never got back on the blog after that with all of the hubbub this weekend. Sorry!
So, Wylee's appointment on Thursday went as well as could be expected. The "mass" looked a lot less inflamed, but was still a little swollen. He saw a different vet than on Tuesday, but apparently the notes she left were very detailed and the nurse guy was the same, which helped. She tried to draw some liquid out of the mass, but didn't get much different than before. When she pulled the needle out of the area though, Wylee's swollen mass area began leaking. They thought it would just stop, but it didn't, so the vet tried to squish all of the liquid out. Wylee wasn't a big fan of that! When it just kept coming out, she asked for a bigger needle and poked him a few more times to help get more out. He really didn't like that. They didn't get it all out, but it slowed enough that they decided to stop.
The slide didn't show any cancerous cells, but there was no indication of what the "mass" actually was either. It think that God is trying to tell me something.
This vet thought that surgery was definitely in order to find out what was causing the issue. She wasn't able to do the surgery, the vet who would do it was not in town that week. They were going to consult with her, make sure she was comfortable doing the surgery, and then they would call us back. That was supposed to be today, but we didn't hear from them. We'll be calling tomorrow.
This weekend's hubbub...
The girls got lots of grandparent time this weekend. Dinner with Pepere and Memere on Friday, Grandma and Grandpa came in on Saturday, with visits from Memaw and Papa, Memere and Pepere, Tiffany, Kevin, Hunter, Mary Alice, Laurie, and Aubrey.
Dedication on Sunday went well. We were worried about Kenedy being nervous about being on stage in front of everyone in that great big church, so we had talked it up all weekend. Who knew it would backfire on us? She did a really good job on stage, but when the dedication was over and it was time to leave the stage, she whined very loudly, "but I want to stay on the stage!" for all to hear. The children's ministry coordinator, went ahead and mentioned the children's Christmas musical was coming up and that we may want to keep that in mind for Kenedy... : ) She is definitely all drama, besides the fact that she sings her way through most of the day, with big showtunes-style endings. I think she'll have quite the time in the musical!
We visited with Janma, Chad and Jamie, went to eat with the family and continued the busy-ness throughout the day.
I'll post pics from the weekend when someone sends them to me, as it is hard to be the one taking pictures when you are on stage.
So, Wylee's appointment on Thursday went as well as could be expected. The "mass" looked a lot less inflamed, but was still a little swollen. He saw a different vet than on Tuesday, but apparently the notes she left were very detailed and the nurse guy was the same, which helped. She tried to draw some liquid out of the mass, but didn't get much different than before. When she pulled the needle out of the area though, Wylee's swollen mass area began leaking. They thought it would just stop, but it didn't, so the vet tried to squish all of the liquid out. Wylee wasn't a big fan of that! When it just kept coming out, she asked for a bigger needle and poked him a few more times to help get more out. He really didn't like that. They didn't get it all out, but it slowed enough that they decided to stop.
The slide didn't show any cancerous cells, but there was no indication of what the "mass" actually was either. It think that God is trying to tell me something.
This vet thought that surgery was definitely in order to find out what was causing the issue. She wasn't able to do the surgery, the vet who would do it was not in town that week. They were going to consult with her, make sure she was comfortable doing the surgery, and then they would call us back. That was supposed to be today, but we didn't hear from them. We'll be calling tomorrow.
This weekend's hubbub...
The girls got lots of grandparent time this weekend. Dinner with Pepere and Memere on Friday, Grandma and Grandpa came in on Saturday, with visits from Memaw and Papa, Memere and Pepere, Tiffany, Kevin, Hunter, Mary Alice, Laurie, and Aubrey.
Dedication on Sunday went well. We were worried about Kenedy being nervous about being on stage in front of everyone in that great big church, so we had talked it up all weekend. Who knew it would backfire on us? She did a really good job on stage, but when the dedication was over and it was time to leave the stage, she whined very loudly, "but I want to stay on the stage!" for all to hear. The children's ministry coordinator, went ahead and mentioned the children's Christmas musical was coming up and that we may want to keep that in mind for Kenedy... : ) She is definitely all drama, besides the fact that she sings her way through most of the day, with big showtunes-style endings. I think she'll have quite the time in the musical!
We visited with Janma, Chad and Jamie, went to eat with the family and continued the busy-ness throughout the day.
I'll post pics from the weekend when someone sends them to me, as it is hard to be the one taking pictures when you are on stage.
Tuesday, September 9, 2008
Kamryn's Stats and The Other Problem Child
Today was Kamryn's 4 month pediatrician appointment. We, and everyone else around us, have been waiting for this one to see how she is measuring up these days. (because it affects the meds and she's just ginormous!)
She weighed 18 lb. 10 oz. and was 27 inches long, which literally put her "off the charts" in both categories. She is above the 100th percentile mark. The doctor remarked that he had a some 1 year olds that were her size. Yikes! He looked at his chart a little more and said that this height and weight was average (50th percentile) for 9 month olds. We knew she'd been growing the last two months, but geez!!! At her two month visit, she was just around the 50th percentile for her age.
He thinks that is a good time to go ahead and introduce solids. So we'll have our first round of cereal this week. Look for pictures soon.
She also got the second round of a set of four vaccines today, one orally and three shots. She didn't care for that much, but settled down fairly quickly. She went to work with me for an hour, since I was running late to a meeting from her appointment. The folks at the campus I was at appreciated her attending the meeting. Of course, we may not have been as productive as normal...
Other Kamryn related stuff:
She hasn't had a seizure since Thursday.
Her dedication at church is this weekend.
On to the other problem child...
No, not the crazy 3-year old, it's the 7 year old, Wylee. Last night, he was his normal busy active self. This morning he woke up and wouldn't eat and was very lethargic and just laid around all morning. Obviously, not his normal self. He also has a booboo on his leg, which we thought could be getting infected making him feel bad. So we scheduled an appt this afternoon at the vet.
At the vet, he was running a fever (whatever that is for a dog) and was walking gingerly. We thought it was due to his leg booboo at first, but it wasn't it. (This will eventually get into "Too Much Information" land, so feel free to skip to the end, if you don't want to hear about doggy insides.)
For a year now, we've been operating under the assumption that he had a small hernia, which appeared to be a bulge on his belly by his rear leg. Today, though I hadn't noticed it when I put him in the car, the "bulge" had substantially increased in size and was red and inflamed looking. The doctor decided that was what was making him feel bad, as it was red and angry looking and much bigger than it has been for the last year. They tapped the bulge to see what kind of liquid was in it, and got nothing but some bloody liquid. She prepared a slide of it to study and then also talked other options with me. We could do a rectal to see if everything was where it was suppose to be, an x-ray to see if they could determine if any organs were in what appeared to be the hernia, or a sonogram, which they were not equipped for at 5 pm. So we did two of the three...
The rectal turned out to be inconclusive, she had small hands and he was too large a dog to really get a good feel for the matter... We went ahead and did the x-ray, hoping to get a good shot of the abdomen to see if we could determine if there was indeed a perforation of the abdominal wall and if there were organs that were trapped in the hernia that could be having blood circulation cut off to them, which could end up being a fatal issue if not dealt with in a timely enough manner.
After the x-ray was developed, she showed it to me and explained it enough for me to understand. There was a very clear abdominal wall, and appeared to be in tact with no perforations. All of the organs (liver, intestines, bladder, etc) were in place and accounted for above the abdominal wall. All of this means that it is almost certainly not a hernia.
The problem is... what is it? (Not that we haven't played that game before!) Right now she is calling it a "mass." It could be a tumor of some sort or possibly be cancerous, but we don't know right now. Most likely he will need surgery, but that can't happen until the swelling and inflammation goes down. So, she prescribed an antibiotic and anti-inflammatory and wants to see him on Thursday to decide how to proceed, but if he isn't back to himself tomorrow afternoon, she thinks we should bring him in.
Hopefully the mediation will do it's job and Wylee will start feeling better. He looks pretty pathetic right now. We'll keep you updated on this saga as it unfolds.
She weighed 18 lb. 10 oz. and was 27 inches long, which literally put her "off the charts" in both categories. She is above the 100th percentile mark. The doctor remarked that he had a some 1 year olds that were her size. Yikes! He looked at his chart a little more and said that this height and weight was average (50th percentile) for 9 month olds. We knew she'd been growing the last two months, but geez!!! At her two month visit, she was just around the 50th percentile for her age.
He thinks that is a good time to go ahead and introduce solids. So we'll have our first round of cereal this week. Look for pictures soon.
She also got the second round of a set of four vaccines today, one orally and three shots. She didn't care for that much, but settled down fairly quickly. She went to work with me for an hour, since I was running late to a meeting from her appointment. The folks at the campus I was at appreciated her attending the meeting. Of course, we may not have been as productive as normal...
Other Kamryn related stuff:
She hasn't had a seizure since Thursday.
Her dedication at church is this weekend.
On to the other problem child...
No, not the crazy 3-year old, it's the 7 year old, Wylee. Last night, he was his normal busy active self. This morning he woke up and wouldn't eat and was very lethargic and just laid around all morning. Obviously, not his normal self. He also has a booboo on his leg, which we thought could be getting infected making him feel bad. So we scheduled an appt this afternoon at the vet.
At the vet, he was running a fever (whatever that is for a dog) and was walking gingerly. We thought it was due to his leg booboo at first, but it wasn't it. (This will eventually get into "Too Much Information" land, so feel free to skip to the end, if you don't want to hear about doggy insides.)
For a year now, we've been operating under the assumption that he had a small hernia, which appeared to be a bulge on his belly by his rear leg. Today, though I hadn't noticed it when I put him in the car, the "bulge" had substantially increased in size and was red and inflamed looking. The doctor decided that was what was making him feel bad, as it was red and angry looking and much bigger than it has been for the last year. They tapped the bulge to see what kind of liquid was in it, and got nothing but some bloody liquid. She prepared a slide of it to study and then also talked other options with me. We could do a rectal to see if everything was where it was suppose to be, an x-ray to see if they could determine if any organs were in what appeared to be the hernia, or a sonogram, which they were not equipped for at 5 pm. So we did two of the three...
The rectal turned out to be inconclusive, she had small hands and he was too large a dog to really get a good feel for the matter... We went ahead and did the x-ray, hoping to get a good shot of the abdomen to see if we could determine if there was indeed a perforation of the abdominal wall and if there were organs that were trapped in the hernia that could be having blood circulation cut off to them, which could end up being a fatal issue if not dealt with in a timely enough manner.
After the x-ray was developed, she showed it to me and explained it enough for me to understand. There was a very clear abdominal wall, and appeared to be in tact with no perforations. All of the organs (liver, intestines, bladder, etc) were in place and accounted for above the abdominal wall. All of this means that it is almost certainly not a hernia.
The problem is... what is it? (Not that we haven't played that game before!) Right now she is calling it a "mass." It could be a tumor of some sort or possibly be cancerous, but we don't know right now. Most likely he will need surgery, but that can't happen until the swelling and inflammation goes down. So, she prescribed an antibiotic and anti-inflammatory and wants to see him on Thursday to decide how to proceed, but if he isn't back to himself tomorrow afternoon, she thinks we should bring him in.
Hopefully the mediation will do it's job and Wylee will start feeling better. He looks pretty pathetic right now. We'll keep you updated on this saga as it unfolds.
Friday, September 5, 2008
Update and Pics - Sept. 5
We're still continuing to have our ups and downs with Kamryn's seizures.
A. My district's insurance company switched Sept. 1, and I completely forgot, so when we finally talked to the neurologist and he prescribed a new medication, Trileptal, we tried to pick it up to the tune of $177.99, because it showed that my insurance had expired. Yikes! Then I had to go home and find the new cards which took a while since they were in a stack of unopened mail in a secretively marked envelope with a company name that I didn't recognize. By the time I found them, the pharmacy was closed and I had to wait until after work the next day to pick it up.
B. So, then she had another last night around 9 pm, which was about two hours before we were due to start her new medicine. Grrr.... We went ahead and gave her an extra pill of phenobarb and started the rest of the medicine as the doc had prescribed. We're taking her off of Keppra and starting the Trileptal slowly. For 1 week, we'll decrease her from 2 to 1 ml of Keppra and introduce 1/2 ml of the Trileptal. Then next week, no Keppra and 1 ml of Trileptal. I don't know a lot the new medicine or why he chose to switch her. I'm guessing that it is a little stronger than Keppra and used with older kids. Keppra was probably best for newborns and was hopefully going to be enough until she grew out of the seizures. But that doesn't appear to be the case just yet.
She did not have another seizure that night or at all today. She's acted like she felt fine and nothing is bothering her, except of course when she thinks we don't feed her enough! The girl would take down a Big Gulp if we'd let her!
We called and texted the neurologist today, but did not get a response. It's annoying, but I'm sure he feels the same about us. We're going to let it go for now, but if she has another, we'll be hounding him for some contact. I don't like us being the ones to just make up what to do with the medicines when she has a seizure, though we are getting pretty good at predicting what he would say...
Hopefully, the new medicines will prove effective for her. I'll keep y'all posted if anything changes significantly. Though we are having them from time to time, at least they are only singular occurances that we can get back under control fairly easily, not several day stints like before.
On a brighter note, here are some pictures that I took today of the girls. I was trying to get a good one of the two of them for them to put up during her dedication at church. There are also pictures of Kenedy at a birthday party. It was for her new friend from school, Evie. She had a blast running around the bouncy place with all of her little girl friends from school.
Didn't pick this one, it looks like Kamryn is getting the Heimlich.
Kenedy took this one... Another no...
Here's the winner!
This one was cute of just Kamryn...
Evie's Birthday... It took forever for her to move out of the toddler bouncyhouse!
With Evie in the little bouncy...
but when the others are this tall, who can blame her... She eventuall did it though.
Running around with the other little girls in the dino bouncyhouse.
Giving Evie her Princess stuff.
Sunday, August 31, 2008
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
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
Thursday, August 28, 2008
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.
Monday, August 18, 2008
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.
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...
telling us all about it...
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.
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...
Saturday, August 16, 2008
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
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