Wednesday, February 3, 2010
Saturday, November 8, 2008
A big girl bed!

After breakfast the next morning, she couldn't get enough! She made her way back up in the bed and just beamed.
Friday, October 24, 2008
The past and the future

Tonight, Kaitlyn stood up from a sitting position in the middle of the room - without ANY assistance! We were so proud that our applause nearly scared her and she quickly plopped down!
Monday, October 13, 2008
Baby Steps

Monday, September 29, 2008
A new class and a new bug
Friday night we had out first bout with a stomach bug. WOW - this was not fun. It's so hard to see her go through that and not be able to tell us what's wrong or when it's coming. Thankfully, she's feeling better. But still not eating hardly anything. I am sure this will improve.
Wednesday, September 24, 2008
FIRST STEPS!
Wednesday, September 17, 2008
A secret reveled...
Thursday, September 4, 2008
A makeover and a new blog!
First, I have to show off an old favorite picture of lil' KatieCakes


Kaitlyn is moving all over the place... She's taking walks with us holding onto our hands. Her stepping continues to improve. And she loves her push toys!
Wednesday, June 11, 2008
Long overdue update!

She continues to be such a ray of sunshine. She's always happy and loves to laugh at her daddy and the puppies.
Thursday, April 24, 2008
Our little angel

Kaitlyn had her first physical therapy evaluation last week. The 2 hour session was very educational. We watched Kaitlyn play with the doctor doing very specific tasks. Everything from picking raw beans out of bowl, pulling a string, to trying to color with marker. After the assessment, her 1 hour/week sessions will target her weaker areas and help her gain more muscle tone. We hope she'll be walking before too long. The PT said her outlook was especially good since her seizures are under control. We're still seizure free since Feb 14, 2008!
Monday, April 21st, Kaitlyn has surgery to remove the dermoid cyst above her left eye. After a checkup, the doctor noticed that it had grown and decided it would be safest to have it removed. The 2 hour surgery went perfect. Kaitlyn did well with anesthesia. Once we were home, she played nonstop! It's true - children are resilient! She has a little black eye and 9 stitches. The amazing thing is -she has no clue. She has yet to even touch it or seem bothered by it. She amazes us! She reminds us that there are things not worth worrying about.
Thursday, April 10, 2008
April Update

Monday, March 10, 2008
Follow up with neurologist

Monday, February 11, 2008
Progress!

Since out last post, Kaitlyn has successfully reached a full dose of her 2nd medication, Zonegran. She is responding remarkably well!
We have been seizure free since February 2!
It's truly amazing. She has been doing so well that Dr. Olson has begun to wean her off of the 1st medication - phenobarbital. We have an 18 week plan to reduce her doses to 0. If she continues to do well with a reduced dose of phenobarbital, we can stick to the 18 week plan. Kaitlyn has started crawling - more like an Army crawl right now. She's also quite a chatterbox. We always wonder what she's trying to say - but she has a lot to say :) Thank you for your prayers & we'll keep you posted on all of the wonderful progress!
Wednesday, January 9, 2008
Update from 2nd EEG
Tonight, he started her on an additional medication called Zonegran (Generic version is called zonisamide). It will take anywhere from 18 days to 6 weeks to get Kaitlyn up to a full dose of this new medication. Once Kaitlyn is taking a full dose, we should be able to see if this medication is helping control her seizures. She will take the zonisamide in addition to the phenobarbital.
After Kaitlyn is taking a full dose of the zonisamide, we will call Dr. Olson and give him our seizure diary and he'll make a determination of next steps depending on her progress.
Thank you so much for your prayers - the power of prayer is amazing.
If you'd like to read more about Epilepsy and seizures, please see www.epilespy.com This is a great source of information that Josh & I check regularly.
Have a wonderful week & we'll keep you posted on Kaitlyn's progress.
Tuesday, January 8, 2008
No results yet...
Wednesday, January 2, 2008
Seizures & EEG

The seizure seems like it lasts an eternity for us, but in reality it's only a couple of seconds. The main difference is we have time to react to the seizure (or in my case, think about panicking).
We are having a second EEG done tomorrow AM at the request of her doctor. We were please to see that instead of another medication increase. Hopefully the EEG will give Dr. Olson more clues and maybe there's another medication that will help Kaitlyn.
Kaitlyn is still the happiest little girl around. She's been blossoming so much since her birthday. She says Mamamama and Babababab. It's so cute to hear her little voice. Especially when she looks at Josh as says, "Ma-ma-ma". She's also putting little cereal puffs in her mouth without help.
We will keep you posted as soon as we hear results.
Happy New Year!!
Tuesday, December 4, 2007
Update
Our next appointment with Dr. Olson will be in March. I'll keep you posted on any changes!
Thank you for all of your prayers!
xoxoxoxoxoxoxoxooxoxoxoxoxox
Tuesday, November 13, 2007
Monday, November 12, 2007
We gave our diary of seizures to the nurse. She was very thorough, asking us tons of questions and told us what to keep track of (medicine changes, seizure length, seizure description, etc). Every time we see a change, good or bad, we'll call the office & report these changes. She said there's no need to call every day, but every week to 2 weeks would be sufficient. She'll give her notes to Dr. Olson and she suspects he'll want her blood level results before he makes any recommendations.
Kaitlyn's first blood level check is scheduled for Thursday, but it will probably be tomorrow.
Kaitlyn is still very happy & playful. Her teachers said they've noticed she's playing with more toys and likes to babble even more than before!
We'll be sure to post Dr. Olson's recommendation once we hear.
Tuesday, November 6, 2007
Our meeting with Dr. Olson
When we were initially told the frequency, we were concerned we wouldn't know when there was improvement with medication. We were very happy to find out the seizures we saw were the only ones she was having. That being said, we are thrilled that the medication is helping all of the seizures!
Dr. Olson said Kaitlyn's MRI results were normal. There were no lesions and no surgery was required. He did say that there is abnormal development in Kaitlyn's brain causing the seizures and the slow rate of her development. He was very clear that the seizures were not causing the slow development. His first priority is to stop the seizures. He was very pleased that she's responding to the phenobarbital. As far as her development goes - we'll have to wait and see.
Kaitlyn will have her blood level checked next week to ensure the proper level of medication. We will meet with Dr. Olson every 3-4 months to check Kaitlyn's progress.
We are very excited to know the seizures are less frequent and will continue to work with lil' KatieCakes to achieve all of her milestones! Thank you again for all of your thoughts & prayers!
xoxoxo
Monday, November 5, 2007
Doing great
Thursday, November 1, 2007
Full dose
Today was very normal. We didn't notice any increase her drowsiness or sleeping. Her disposition continued to be very happy.
We have continued to notice episodes, but we were told not to expect many changes right away. However, the episodes are less obvious than before. This is very reassuring! We are very anxious to meet with Dr. Olson on Tuesday.In other news - Kaitlyn has started to hold her own bottle! Hooray!
Tuesday, October 30, 2007
Brave girl
We will receive the MRI results during our 1st meeting with the pediatric neurologist next Tuesday.
Josh & I are very appreciative of all of your thoughts & prayers. Thank you!
Kaitlyn is ready to be on the move - we think she'll be crawling soon! Tomorrow is Halloween & we're very excited to get dressed up!
Sunday, October 28, 2007
Sleepy weekend
Josh couldn't help but noticed that Kaitlyn seemed really tired Saturday morning. He said she just seemed lackadaisical. Kaitlyn took 3 naps Saturday, slept all night (12 hours), and took 3 naps on Sunday. Each nap lasted about 1.5-2 hours.
We're really hesitant to give Kaitlyn a full dose in a few days - we're worried she'll sleep all day. We've left a message with Dr. Baldwin to get a revised dosage amount.
Other than day time drowsiness, Kaitlyn is still very playful and quite a firecracker!
Thursday, October 25, 2007
Baby talk
Today at school, Kaitlyn's teachers said she talked all day long! She was very playful tonight after dinner & went to bed at her normal time. We're looking forward to the weekend ~ Finally!
We have our appointment set for November 6 to meet Dr. Olson.
Wednesday, October 24, 2007
Kaitlyn's MRI is scheduled for Tuesday, October 30. We should know soon when we'll meet with Dr. Olson.
Tonight, Kaitlyn was very silly during dinner tonight. She went to bed no later than usual - hopefully tomorrow will be the same.
Tuesday, October 23, 2007
Sleepy day
Before I knew it, Kaitlyn was sound asleep at 6:30pm. I had to wake her up to give her medicine. We'll keep watching the sleeping hours! Other than longer naps, Kaitlyn was her normal happy, playful self.
Monday, October 22, 2007
Meeting with our pediatrician
After a weekend of web searches on Google & WebMD, we felt prepared to meet with our pediatrician Dr. Baldwin.
We found out Kaitlyn's seizures were happening 8 times per minute on the left side of her brain, but couldn't pinpoint where. It's too early to tell if they are affecting her development, but she will be closely monitored. An MRI will give us much more information.
After a long Q&A session, we left with a prescription for phenobarbital. This medication will help slow the brain down. We won't see many differences right away, but in 3 months we'll have another EEG check the brain activity. We will continue to meet with Dr. Olson every 3 months.
Kaitlyn will be on 1/2 dose for 10 days to monitor how her body metabolizes the medicine. We'll need to watch for excessive drowsiness. We left our appointment feeling very well informed and confident Kaitlyn was in the very best care.
Within the next two weeks we'll have an MRI to get a better look at her brain & hopefully pin point a location & rule out any matter pushing on her brain. After the MRI we'll have our first meeting with Kaitlyn's neurologist, Dr. Olson.
Tonight was Kaitlyn's 1st dose of phenobarbital. We will find out this week when our 1st meeting with neurologist & MRI will be.
Friday, October 19, 2007
Our first post...

Yesterday, we took Kaitlyn over to Children's Hospital for the EEG. Thinking we would have to wait 5 days for results, we were surprised when we received a call tonight from Kaitlyn's pediatrician. He confirmed that Kaitlyn is experiencing seizures. Hers are called focal seizures, confined to a limited area of the brain. The real concern in Kaitlyn's case is the frequency in which they occur. She is actually experiencing several of these seizures every minute, more intense when she sleeps, with a slower recovery time. That being said, she is a very happy baby and is not in any pain whatsoever.
We have a follow up appointment with her pediatrician on Monday to find out more information and then schedule a meeting with a Pediatric Neurologist, Dr. Olson. He is one of the leading neurologists in the southeast and we couldn't ask to be located in a better place to receive the best care and diagnosis possible.
We have many unanswered questions at this point and are trying to keep as calm and level headed as possible until we can get more details. Millions of people suffer from seizures and most are easily controlled with medication. We have never had any experience with them in our family though, and it is difficult to look at your 10 month old and know that she is experiencing them so often.
We will keep you posted as we find out more details.