A big girl bed!

Kaitlyn has graduated to a big girl bed! We decided to try out the toddler rail on her convertible crib. She was a little upset when she first saw it - she thought she had to go to bed! Eventually she ventured up there and looked so proud. She did great through the night.

After breakfast the next morning, she couldn't get enough! She made her way back up in the bed and just beamed.

The past and the future

A year ago this week we received Kaitlyn's first EEG results. It feels like 10 years have passed, but we wouldn't trade the last year for anything. Our little angel is amazing and she makes us smile and laugh every day.



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!

Baby Steps

It is so exciting to see Kaitlyn taking more and more steps. She walked down the hallway this weekend - it was precious to see. She squeals the whole time! I bet within the next week she's start taking the steps on her own, without a 'push start' from Mommy or Daddy!

Did I ever mention her left ear tube fell out?! Annoying, but thankfully the ear drum healed and the Dr. doesn't want a new one put in. Phew!

Kaitlyn's also doing really well with her sign language. "More" is her favorite... as in more food! She likes food just like her mommy! She's using 'all done' and learning 'drink'. Our next three words to learn are 'toy', 'blanket', and 'sleep'. Occasionally, she will say ba-ba-ba when she waves bye-bye, so words aren't too far off!!! The good news is, she's very vocal with noise. She sounds like she's always singing. :)

A new class and a new bug

Kaitlyn started the Jr Toddler class last week. Since she's not walking, it wasn't a safe place for her, but now she can surely hold her own. She's really thriving in this classroom.

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.

FIRST STEPS!

Kaitlyn took her first steps today! We are so proud!! So here's how it happened. We go on a walk every night after dinner. Tonight, as usual, we practiced moving from Mommy to Daddy. And sure enough, Kaitlyn took 4 steps right into her Daddy's arms. It was a magical moment!

A secret reveled...

A secretly want a minivan. There, I've said it. I kind of, sort of, want a minivan. Fuel economy, ease of access, I don't need to go on. I wrote this so you can either talk me into it or out of it. I can't believe I just wrote this.

A makeover and a new blog!

I'm embarrassed to see that I haven't written since June... I have no excuse! I have been re-inspired to write!

First, I have to show off an old favorite picture of lil' KatieCakes

Kaitlyn has come so far... Her 6 month neurology check up was amazing. Dr. Olson said that in his 29 years of practice, he's only seen 2 patients respond to Zonegran. Kaitlyn is 1 of those 2. Amazing! He's 90% sure of a diagnosis. BMEI - Benign Myoclonic Epilepsy in Infancy. This means that it is only present in infancy and will not appear again. Dr. Olson wants her to be seizure free for 1 year until she can come off medicine. Since she's been seizure free since February, we only have 4 months to go. It brings tears to my eyes just to write those words. We truly feel she's been healed by the hands of God.

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!

Long overdue update!

Since our last update, so much has changed! Kaitlyn's weekly physical therapy is working wonders! She's really using her legs more & more. She's cruising along furniture and picking up her feet. Her right leg is a little stronger than her left. We use 1lb ankle weights to help strengthen her legs while crawling and cruising 10 minutes per day. She doesn't seemed phased by them at all.

Kaitlyn can also lower herself down from a standing (holding onto the table) position to a sitting position.

Her physical therapist thinks that she'll be walking by November. That will be very exciting ~ carrying around 24+lbs is getting hard :) Kaitlyn has already beat her goal of crawling up the stairs - she's beat this goal by 1 month! Walking may come sooner! :)

You can hardly tell Kaitlyn had surgery near her eye. Her scar is getting much lighter along her brow line.

Kaitlyn's speech therapy is going to be delayed by about a month. She's going to need tubes in her ears to help drain fluid. We discovered this after several failed hearing tests. The tubes will also help her balance!

Also, Kaitlyn is 100% off of her 1st seizure medication and still seizure free for 4 months!

She continues to be such a ray of sunshine. She's always happy and loves to laugh at her daddy and the puppies.

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.

April Update

It's been another busy month, but we're happy to report that things are going wonderful. Kaitlyn has still been seizure free since 2/14/08! Almost two months. It's simply amazing.

Kaitlyn is waving and saying bye-bye and enjoying more real food. (table food sounds like something you give your dog!) She's going through a growth spurt - she enjoyed grits, scrambled eggs AND French toast for breakfast this past weekend. We were shocked at how fast she was eating :) She's crawling like a champ and starting to explore pulling up even more. She can get to her knees with ease, but is still hesitant to get to her feet.

We are 11 weeks into the Phenobarbital weaning process and have 7 weeks until we're done with that medication. Yea!

April will to continue to be busy. We start physical therapy April 16th. We are anxious for this to begin! April 21, Kaitlyn will have surgery to remove the dermoid cyst by her left eye. Then, April 23rd, we start speech therapy!

Thank you for your continued prayers & support. I will be posting more regularly to keep you updated on all the progress.

Follow up with neurologist

We had our 4 month follow up with the neurologiston the 6th. The seizures are still under great control! Zero since 2/14! She will continue the full dose of Zonegran and will also continue to wean off Phenobarbital (off by end of May!).

After going over all of her developmental milestones and achievements, they do want her in physical and speech therapy. They said she has hypotonia (known as low muscle tone). You can read more about low muscle tone here: http://en.wikipedia.org/wiki/Hypotonia The therapy will help her tremendously - we are very excited about this! We should find out this week when the therapy will start & all of the details, etc.

Overall it was a good meeting. They classified her type of seizures as myoclonic seizures, but she did not fit the characteristics to a specific epilepsy syndrome. This will just make it a little more challenging to see what lies ahead for Kaitlyn, but we are certainly optimistic!

Thank you again for all of your prayers!

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!

Update from 2nd EEG

Dr. Olson reviewed Kaitlyn's 2nd EEG and as we suspected, there were more clues with this test. From the tests, Dr. Olson determined that Kaitlyn's seizures are not focal or partial as once thought. She is experiencing generalized seizures. We are so thankful the EEG was able to provide more clues to help Dr. Olson treat Kaitlyn.

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.

No results yet...

It's been several days since Kaitlyn's 2nd EEG. We're still waiting for the results and any other information. I left a message with Dr. Olson's nurse, so hopefully we'll hear something soon!

Seizures & EEG

After a few weeks of noticing an increase in Kaitlyn's seizures, we turned in her seizure diary to Dr. Olson. The seizures used to happen in a split second with one or two jerks (around 10-15 sets per day). Now, they happen at least 6 times per day, but with 4-8 jerks.

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!!

Update

I'm so sorry it's taken me so long to post an update. Kaitlyn's seizures have continued to occur, so Dr. Olson increased her medication. Her blood levels were in the normal range, but he still advised on an increase. We were advised to watch her for two weeks to let her adjust to the increase. Last week, her seizures were more intense. I didn't think it would get any better! But the last three days have been much better. She does have a touch of bronchitis, but she's not having seizures. So we'll take it!

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

1st Blood level

Dr. Olson's office called this afternoon and wanted Kaitlyn to come in & have her blood level checked today. Our visit went well & the level results should get to Dr. Olson tomorrow. Stay tuned!

Kaitlyn's drowsiness has gone away, but she's continuing to have seizures. We noticed them start on Thursday and are still occurring today. She's having at least 3-4 per day. They are less frequent than before and more subtle, but Dr. Olson advised us to call his office when we see changes.

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.

Our meeting with Dr. Olson

Today was our first meeting with Dr. Olson at Emory Children's Center. They started by taking several stats - weight (21.5 lbs!), height, head circumference, etc. Dr. Olson began by asking us about the episodes we saw in Kaitlyn. We described them the best we could. He said they were not typical, but did say that they were NOT occurring 8 times per minute. He confirmed her only episodes were the ones we saw - approx. 15-20 per day.

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

Doing great

This weekend was wonderful! Kaitlyn was very playful & didn't want to sit still at all. Josh & I didn't notice any episodes either! It makes us more relaxed as we mentally prepare for our meeting with the neurologist tomorrow afternoon.

We'll post another message after our meeting!

Full dose

Kaitlyn started her normal dosage amount of phenobarbital today. She will receive one dose in the morning and one at night. She doesn't like the taste - I think I'm going to have to find an alternative to the syringe.

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!

Brave girl

Kaitlyn's MRI was today. She did terrific! It was hard to watch the sedation process, but she was such a brave little girl! Josh & I could not be with her during the MRI. She was gone for about an hour. Once back with us, it only took about 15 minutes before she was back to her curious self again.

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!

Sleepy weekend

This weekend flew by, as they usually do. This was our first weekend with Kaitlyn on her medicine. It gave us a good chance to get a better idea of her drowsiness.

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!

Baby talk

Today was a great day! Kaitlyn was such a happy girl when she woke up this morning. She wasn't groggy at all. I'm glad to see she's adjusting to the medicine.

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.

I had to wake Kaitlyn up this morning! She slept very sound & was happy when I woke her up. We have a feeling the doctor will have to adjust her dosage before we give her full doses.

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.

Sleepy day

Kaitlyn went to school, where she loves to play with the other kids. Her teachers are very good with her. We had a meeting with them & they will help us monitor her drowsiness. I picked her up and found out that she took a 3 hour nap! That's about twice as long as she normally sleeps there. Once we got home, we had dinner & a bath.

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.

Meeting with our pediatrician

Kaitlyn took her vitamin B6 over the weekend. We continued to notice episodes...

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.

Our first post...

This journal was started to keep our family & friends updated on Kaitlyn.

We noticed Kaitlyn having episodes since she was about 6 months old (6/07). They would happen every few hours where she loses muscle control and blanks out. We initially thought that something may have startled her, as she would constrict her muscles very quickly and then go limp for a split second, much like you would do if you had been frightened by something. She makes a full recovery and continues to do whatever she was just prior to these incidents. After a while of noticing this activity more frequently, we decided to have her checked out and our pediatrician recommended an EEG.

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.

The doctors want her to have vitamin B6 for 3 days, starting tonight. They want to make sure a B6 deficiency isn't causing the seizures.

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.