One year ago

A year ago right now, we were in Lizzie's room at Children's Mercy Hospital, getting ready to spend the night after she'd had several seizures that day.  We ended up staying for the next few days while they ran what seemed like endless tests: blood draws, EEGs, MRI, lumbar punctures.  The doctors diagnosed her with epilepsy.  They told us our three-and-a-half month old had the brain waves of a preemie.  They told us they were very concerned.  They gave us a list of conditions she might possibly have.  The picture they painted for us about Lizzie's life was pretty grim: severe developmental delays; uncontrollable seizures; possibly limited life expectancy.  We took her home from the hospital not really knowing what to do or how to prepare ourselves for this.

And yet, this past year has been one unexpected gift after another. 

So many people have supported us with prayers, meals, and monetary donations.  I'm really not exaggerating when I say that almost every day, someone asks me how Lizzie is doing, whether it's a friend, coworker, fellow church member, or former high school or college classmate.  We have been flooded with care and support this year.

Developmental delays?  Lizzie's fine and gross motor skills seem to be well within the limits of normal.  She may have a bit of delay in her speech development, but I'm not ready to call it severe, and more importantly, the professionals--doctors and therapists--are not calling it severe. 

Uncontrollable seizures?  As Lizzie's neurologist pointed out a few weeks ago, she's on a fairly low dose of anti-seizure meds.  Even so, it's doing a fabulous job of controlling Lizzie's epilepsy.  Since mid-October, we have only seen a handful of seizures.  The meds are working above and beyond what we expected.

The entire neurology team at Children's Mercy Hospital reviewed Lizzie's case while she was hospitalized last year.  They all agreed that her condition was very serious.  Inexplicably, things have not turned out the way the doctors said they would. 

Who knows what will happen in a year or five or ten?  There may be twists and turns in the road ahead, but for now we are extremely grateful for all the support, and extremely grateful that every day, we have this little girl who is curious and active and good-natured.  She has beautiful dimples and curly blonde hair.  She loves to have books read to her, she loves to snuggle, and she adores her three big sisters.  She's a bit of a mama's girl, but that's okay--Mama doesn't mind.

We are very, very, very, very blessed. 

15 months

Today I took Lizzie to the pediatrician for her 15-month checkup.  Apparently she's going to be a supermodel, because she was in the 90th percentile for height and 30th percentile for weight.  She is a long and lean little girl!  After the exam, the doctor said she looks good and is healthy.  She asked how things were going with neuro and I told her about the appointment a couple of weeks ago.  She was glad to hear things are going well there.  She asked if Lizzie had at least five words in her vocabulary.  I said, "Well, not spoken words, but she knows eight to ten words in sign language!"  Dr. M would still like us to keep working on the sounds, but is glad she's communicating in some way.  Lizzie's next appointment with the pediatrician will be at 18 months.

The OT came on Wednesday and was pleased with how much progress Lizzie is making in sign language.  She can consistently sign mama, dada, dog, milk, more, cracker, apple, please, and book.  There are also a few others that she does some of the time.  The Baby Signing Time DVDs are really helping; Lizzie doesn't pay much attention to them, but they're helping the rest of the family learn the signs so we can use them with Lizzie later!  Speech therapy is still on the table for the future, but for now the OT is going to give her a bit longer to see what kind of progress she'll have in making sounds.

Today's appointment

We took Lizzie to her neurology appointment today.  Dr. K thinks she's looking good and doing well.  He decided to take her off of the pyridoxine and leucovorin she's been on since last September.  He also increased her dose of Keppra (the anti-seizure med).  She'll still take it twice a day, just 0.5 mL more than before.  He said she's still on a pretty low dose, but he wants to keep it as low as possible as long as it's working for her.  He said he does not need to do another EEG at this time because the most recent one she had, in March, was similar to the one she had prior to that, in October.

Dr. K will be gone for the next year on a leave of absence, but he is assigning her to Dr. A while he's away.  He said that, assuming all continues to go well, she needs to be seen again in six months.  When it gets closer to her 2nd birthday, he wants another MRI of her brain.  He especially wants to see the right side of her brain, where it keeps showing slower brain waves on her EEGs.  He wants to see if there's a structural abnormality or something else that might be causing the slower brain waves.  I'm sure we'll hear more about scheduling the MRI when we see Dr. A in February.

Overall, it was a great visit; very positive!

OT visit today

Lizzie's OT came again today.  She was glad to see that Lizzie's walking now; in fact, Lizzie has even been taking more steps at a time just in the last few days, so we're happy with her progress there.  The OT said Lizzie's motor skills seem to be doing just fine.  She commented on Lizzie's demeanor and noticed how cheerful she is.

Most of what we talked about was her language.  The OT asked if Lizzie ever seems to get frustrated that she can't communicate something to us, and we said not really. She said that kids who always seem to be okay with pretty much whatever--that can actually be a sign of a delay.  She asked us more questions, and observed Lizzie for a while.  The conclusion seems to be that Lizzie is a little delayed in her language skills, but is still making some progress.  We're going to keep an eye on it another month, and if she hasn't made very many gains by the end of August, they will see about getting a speech therapist for her. 

In the meantime, we will work on pointing to pictures and objects and naming them and helping Lizzie point at them too; we will practice giving her two options for things she wants and letting her choose;  we will give her directions and help her reinforce her responses (such as "Bring me the ball" and help her get the ball, or "Where's Mommy" and then I call her name and wave); we will work with her on animals and their sounds; and we will keep doing sign language with her.  The OT recommended a series of DVDs called Baby Signing Time; I've put those on hold at the library and will pick them up as soon as they're available.  So we have a lot of work to do this month!

The saga of the appointment

We had a bit of frustrating news this week.  We got a letter from Children's Mercy saying that Lizzie's neurologist, Dr. K, will be taking a one-year personal leave of absence beginning August 17th.  Of course doctors are people too, and I'm sure he has something significant going on in his own life so that he feels the need to do this.  However, it introduces a lot of unknowns into our situation since he's been Lizzie's doctor all along!  The last time we saw him, he said that Lizzie didn't need to be seen again for six months, but that would put her appointment in September, after he's gone.

As soon as I read the letter, I immediately called Dr. K's office to see if we could get an appointment with him anytime before he leaves.  I left a message for the nurse asking if we could see him anytime between now and August 8th.  They called back and said they didn't have anything.  The only appointments they had available were on August 14th and 15th.  I explained that I am an elementary school teacher, and I have to report back to work on August 8th.  I asked if we could come sometime before that if they had a cancellation, and they said yes, so I asked if they could add my name to a waiting list or something.  They said no, that I would just have to call the office a few times a week and ask about cancellations.  They asked if I had any other family members who could bring Lizzie to the appointment.  I said, "Yes, my husband could bring her; but I also want to be there to talk to the doctor because he's the one who is most familiar with my daughter's history, and if he's going to be gone for a year, there are some questions I'd like to ask him about her." 

I asked which doctor Lizzie will be seeing after hers is gone, but they couldn't tell me that.  They said it would probably be one of two but that ultimately the decision was up to the nurses, so I asked when she might be able to get an appointment with one of them if we waited.  Dr. A is gone to a conference in September, and Dr. P is only seeing patients on Mondays and Tuesdays in September and is already full.  So with either of them, we'd be looking at a date past the six months Dr. K recommended for her next appointment.

At this point, I was really discouraged.  If they'd let us know sooner that Lizzie's doctor was leaving, I would naturally have called sooner and we might have been able to get in before I have to go back to work.  August 14th and 15th are just about the worst possible days for me to miss work.  August 15th will be the first day of school for my students, so I absolutely cannot miss that day; but August 14th we have a mandatory meeting in the morning and the rest of the day will be spent doing last-minute things getting ready for the first day of school.  I called my principal and explained the situation, and luckily he was understanding.  He said that I had to be at the meeting in the morning, but that if I needed to be gone for a little while later in the day, I could do that.  So I called the neurologist's office back and set up an appointment for late morning on the 14th.  Not ideal, but it'll have to do!

In better news, Lizzie has another tooth about to come through, and she's getting a little more confident with her walking.  We'll keep her practicing!  Mostly we have just been trying to keep cool with the triple-digit temps this week; we're sticking with indoor activities.  We saw Mr. Stinky Feet at the library, and today we're going to Lakeside Nature Center.  Lizzie just goes along with whatever we have planned.  We are lucky to have such a good-natured, easygoing girl!

Quote

This was posted on the Talk About It! Facebook page the other day and I liked how it made the point that epilepsy is not a blanket diagnosis; rather, being diagnosed with epilepsy is only the tip of the iceberg. 

The following from the National Institutes of Medicine Report, "Epilepsy Across the Spectrum: Promoting Health and Understanding," helps illustrate why we ask everyone to help us talk about it:
 
"Epilepsy is a common and a complex neurological disorder. Epilepsy is not a single disorder but rather a spectrum of disorders -- the epilepsies. Further, epilepsy is more than seizures and may be accompanied by a range of associated comorbid health conditions that can have significant health and quality-of-life implications. Some people with epilepsy have lives that are essentially unchanged, while others' health and well-being are severely affected, and for some people, epilepsy is fatal. Communicating this range of outcomes and meeting the spectrum of needs are major challenges faced by the epilepsy field."


Thank you again to everyone who made a donation to Lizzie's Team for the Epilepsy Walk!  Your donations go to research about the disorder and provide support for people living with epilepsy.

A new tooth!

Lizzie officially has tooth #6!  She's going to look a little crooked when it comes all the way in.  She already has the two front and center teeth on the top and bottom, and one tooth to the right of those on the bottom.  This new tooth is to the left of the ones on the top.  No matter, I'm sure her lopsided grin will be just as cute as the one she already has!

Walking...but not talking

Lizzie is a walker!  She usually only does 2 or 3 steps at a time, but she can take as many as 6 or 7, and then she plops down.  We're trying to have her practice as much as she's willing, but it's slow going.  I'm sure before long she'll be running and I'll be asking myself, "Why again did I want her to walk?"  She does better with the walking if she can hold a toy in her hand.  Not a stationary toy, mind you, just something to hold onto.  I guess it gives her a feeling of security.  Her therapist said that's not uncommon for a lot of kids.

We are also trying to get Lizzie to make more sounds.  She blows raspberries and makes loud "aaaaaaah" noises, and sometimes she even shrieks loudly in the key of "ear-splitting".  I keep saying she's going to sing soprano in the choir someday.  But she doesn't vocalize a lot of consonant sounds; occasionally, but not often.  She says "mama" and knows that it goes with me, and she says "no" but I'm not sure she really knows what that one means.  Once in a while we'll get a "dada" out of her too.  We have tried teaching her some signs: more, finished, milk, water, eat, drink, peach, and cheese, and waving for hi and bye-bye.  "More" and waving are the only ones she does consistently, but we'll keep working on it. 

The doctor keeps saying that she is going to have developmental delays, but so far we haven't really noticed any big ones.  Maybe language is going to be where we see a delay?  Time will tell.

St. Louis walk

We had a great time at the Epilepsy Walk in St. Louis!  It was hot and humid, but we did fine.  We had a lot of people on Lizzie's team; us, Tom's parents, his sister and brother-in-law and their kids, and two of Tom's friends from high school and their families.  After the walk there was a huge bubble machine for the kids, cotton candy, and Cinderella came for a photo opportunity with the kids.  It was an extra special day because it was also Tom's birthday!

Between the walk in Kansas City in April and the walk in St. Louis this weekend, Lizzie's Team raised over $1100 for the Epilepsy Foundation.  Yay!  A HUGE THANK YOU to all who came out and walked with us, or who made a donation to the team.  We are definitely planning on walking again next year and would love to have even more people walk with us!  We'll let you know when we have more information about dates and locations of the 2013 Epilepsy Walks.

Here's a picture of Lizzie "walking" across the finish line with a little help from Daddy:

Everyone's review

Here are Lizzie's stats from her 12-month checkup Tuesday:
She is 19 lb, 11 oz (30th percentile); she is 29 and 1/4th in long (50th percentile); and her head circumference is 17 and 5/8th in around (45th percentile).  She got two shots (which are hard on mommy).  Her pediatrician says she's looking great! 

Today Lizzie's therapist came to work with her, and the coordinator also came along to do the six-month review.  Good news: Lizzie met all of her goals for the first six months that the therapist worked with her!  They were all motor skills: sitting up, crawling, using the pincer grasp, pulling up to stand, etc.  She does all of those things quite well.  The goals that they wrote for Lizzie's next six months are language goals.  They want her to be able to vocalize more sounds and request what she wants.  They did say it's no big deal that she's not walking yet.  If she reaches 18 months and is still not walking, then they'll start to worry.

Okay, so we've had the doctor's review and the therapist's review; now for the Mommy review of Lizzie:
I think she's doing really well too!  Especially when you consider what they were telling us back in September, we are so thrilled with how much she's growing and developing.  She had one small seizure that we know of in May, but not since then as far as we can tell.  Her hair is finally getting longer, and she even has some curls in the back where it's longest.  She has five teeth now and eats mostly table food.  She gets a cup of yogurt every day with some of her medicine ground up into powder and mixed in, and we still feed that to her with a spoon, but she somehow manages to chew up everything else with her only five teeth.  She's a good eater too; there's not much she won't eat with gusto.  Most of the time when she "crawls" it's on her hands and feet with her rear up in the air, rather than the traditional hands-and-feet crawl.  She pulls up on everything and cruises along the furniture, and she can push up to a standing position from sitting on the floor and stand unassisted.  She is quick to smile and show off her dimples, and sometimes she makes a silly grin where she wrinkles up her nose and squints her eyes--it's impossible not to smile back at that one!

Happy birthday, Lizzie!

Lizzie is one year old today! 

A year ago we didn't know what challenges her first year of life would bring, but even if we had known, it wouldn't have changed our joy at meeting her. We love having Lizzie's sweet spirit in our midst.  We are so pleased with her progress and feel very blessed to have so many supporters. 

Happy birthday to our baby girl!

Walking again

We will be walking in the St. Louis area Epilepsy Walk on Saturday, June 16th.  If you are interested in walking with us or in donating to the Epilepsy Foundation, please click the link below for more information.  Thank you for your support!

http://seizetheday.kintera.org/faf/donorReg/donorPledge.asp?ievent=475388&lis=1&kntae475388=8E5289F9E78C4171971C57DBF214C230&supId=354734720

What I was going to say

Someone asked me what I was going to say that I didn't say on Sunday at the Epilepsy Walk, so here's the text of what I planned to say:

Good morning!  I’m so excited to see all of you here today.  You’re probably here because epilepsy has affected your life or the life of someone you know.  I’m here this morning with some of my family and friends to walk in honor of my youngest daughter, Elizabeth. We call her Lizzie. 

On  Saturday, September 10, 2011, our family was at a neighborhood festival being held at our church.  Lizzie was three months old and was strapped into the baby carrier on my chest, asleep.  I was helping at one of the booths, doing face painting, when all of a sudden I felt Lizzie stiffen and jerk.  I looked down and her eyes were rolled back in her head and her little body jerking rhythmically.  It only lasted a few seconds, but it was terrifying.  One of my friends noticed the look on my face and asked what was wrong.  I said, “I think Lizzie just had a seizure.”  I quickly got up from the table and began to walk inside the building.  My friend went to try to find my husband, and then Lizzie had another seizure.  We left our three other daughters with friends at the church and quickly drove to the nearest hospital.  There, in the emergency room, they checked Lizzie out, drew some blood, and started an IV.  She had a CAT scan, and when that was finished, she was loaded into a Children’s Mercy ambulance and taken downtown. 

At Children’s Mercy, Lizzie was admitted.  She continued to have seizures.  This will sound strange, but I was glad when she had two seizures in the presence of the neurologists, because then they could see exactly what we were talking about. Over the course of the next three days, Lizzie had numerous blood draws, two spinal taps, two EEGs, and an MRI.  They wanted to rule out infection or anything else that might be causing the seizures.  I still remember the grave look of concern on the doctor’s face after the first EEG.  He said, “Her EEG was not good” and proceeded to tell us that Lizzie was showing a lot of seizure activity.  He said that the kind of seizure activity she was showing was consistent with severe cognitive and other developmental delays. He said that the brain waves shown on her EEG looked more like those of a premature infant instead of a three and a half month old.  He said it was likely her seizures would not be able to be completely controlled by medication.  The doctor even mentioned some specific epileptic syndromes, some of which may limit a patient’s life expectancy. He repeatedly told us we were facing a long road ahead.    Needless to say, when Lizzie was discharged from the hospital, I was full of worries and concerns.  However, we were blessed to have the support of many, many people in the form of prayers, cards, meals, child care, and financial assistance with medical bills and prescriptions.

Today, although the worry is still there in the back of my mind, it has lessened somewhat because Lizzie is doing very well.  We still don’t know why she has epilepsy.  All her genetic tests have come back normal, and her MRI was normal as well.  It frustrates me a little that they haven’t been able to pinpoint a cause, I guess because I think if they could nail down the cause then they would know what they’re dealing with and have a more specific plan of treatment.  However, Lizzie’s medications are keeping her seizures under control, and she has only shown a few minor delays in her development.  Her therapist from Infant/Toddler Services thinks she’s looking good, and her neurologist is also very pleased with her progress.  For the most part, Lizzie is a lot like other ten-month-old babies.  Although of course I don't know what her future looks like, right now I am just grateful for who she is and all she can do.

This Walk is a great way to bring awareness about epilepsy. The money raised helps the Foundation provide services for people living with epilepsy, provide awareness programs for proper seizure recognition and first aid, provide a voice to make sure health care options for people living with seizures remain strong, and provide much needed research funding toward better treatment options and ultimately a cure.  Thank you for being a part of such an important cause!

A lot going on

We have had a busy few days!  Friday, April 20th, Lizzie had another EEG.  The routine was similar to what we had to do for the EEG she had in October.  We had to keep her up two hours past her bedtime the night before, and then wake her up at 4 AM and keep her awake until the EEG at 7:30 AM.  Lizzie got pretty sleepy as the morning wore on, so I kept her awake on the car ride to the hospital with a wet washcloth, which of course she did NOT like! 

Now that she's older, it was harder for the tech to get all the little buttons glued to her head.  You may or may not know, the buttons can't just go any old place; there are very specific locations they have to put them on the head in order to get the best measurements.  Lizzie was very wiggly and did not appreciate being held down so the buttons could be attached.  At one point Daddy was holding her head still, and I was holding her arms down.  This left me in the path of her feet, which she was angrily kicking for all she was worth.  I was getting kicked in the face and throat repeatedly, so I finally turned my head.  She was then kicking the back of my head, but it wasn't as bad as the face.  You may say, "Oh come on, she's ten months old, how bad could it be?" but I can vouch for the fact that she kicks hard!  I even have a little bruise on my jaw in one place. 

Once they started the EEG, it was pretty uneventful.  They let her go to sleep for a while, then they woke her up and flashed the strobe lights at her to see if they would provoke a seizure or other change in her brain waves.  Then they got out the nasty-smelling adhesive remover to take the glue off her head.  It didn't all come off, so we're still peeling little bits of it out of her hair as we can.

Saturday the 21st we celebrated Kate's 3rd birthday.  Her actual birthday is not until the 29th but since Tom's parents were in town and my parents were available we went ahead and had her party that day.

Sunday the 22nd was the Nichols-Purucker Epilepsy Walk.  Obviously we had never participated before, so I wasn't quite sure what to expect, but it was a good time.  They had asked me to speak ahead of time, so I prepared a short version of Lizzie's story to share.  A lot of people were talking when I (and others) got up to speak, so I got a little distracted and didn't end up saying everything I had intended to say, but I think it went fairly well.  The walk route was just around the mall, so we didn't have to worry about the cool, windy weather outside, which was nice.  The whole atmosphere of the walk was very laid back and casual.  If you came and walked with us, or contributed money to the Epilepsy Foundation in honor of Lizzie, THANK YOU!  We are so grateful for your support!

Today I called the neurology clinic to see if they had the results of Lizzie's EEG.  The doctor I spoke with was one she had seen when she was admitted to the hospital in September, but not Dr. K, who she's been seeing in the neuro clinic.  Dr. K was out of town this week so Dr. L was taking his calls.  To sum up the results of the EEG, Dr. L said that it was about the same as the one she had in October, but much better than the ones she had in September when she was hospitalized.  He said that the EEG was abnormal.  It did not show any "epileptiform changes" (seizure activity), which is good.  However, it still shows "focal slowing".  I asked him to explain what that meant, and he said that it is seen in the context of children who are cognitively delayed or have a structural abnormality of the brain.  He said that in and of itself, it is nonspecific in telling us why she has epilepsy, but put together with other tests, such as MRI, it can tell us more. 

I will probably call the clinic again in a week or two to speak to Lizzie's regular neurologist and see if he has any further information or interpretation of the EEG. I think it's safe to say that I'm slightly disappointed it didn't show any improvement, but also slightly surprised, because she seems to be doing so well.  However, I'm also aware that things could be a lot worse for Lizzie.  If this is "abnormal," I can happily live with it!

I also asked about genetic tests to see if any results had come back.  He said that the SCN1A and ALDH7A1 tests were both normal.  ALDH7A1 is the gene that would be affected if she had pyridoxine-dependent epilepsy; since it is normal, I guess that means she doesn't.

That's about all I know for now; I will try to be better about updating the blog, although sometimes there are periods of time when there's not a lot to report.  Thank you for checking to see how Lizzie is doing!

Neuro appt

We saw Dr. K at the neurology clinic today.  We had a Saturday appointment because he is going to be out of town a lot during April, so they're trying to get people in a little ahead of time.  He checked Lizzie over and expressed how well he thinks she's doing with seizure control and development.  She's looking so good, in fact, that he doesn't need to see her back in the neuro clinic for SIX MONTHS!!!  He does want to do another EEG in a few weeks, but he anticipates that it will look pretty good based on her demeanor and behavior. We are amazed and so excited!  It was a good visit!

Quick dr. visit

I took Lizzie to the pediatrician today to get her ear checked to make sure she didn't have an ear infection.  All is well and she weighs 18 lb 6 oz!  That's a pretty big gain in such a short time!

9-month checkup

Saw the pediatrician today for Lizzie's 9-month checkup.  She weighed 17 lb. 3.5 oz.  Everything is looking good.  The doctor also said she did not hear the heart murmur that Lizzie had at one point.  We're glad to hear all is well!

We did ask about Lizzie's sleep habits.  She is a catnapper; she doesn't sleep for very long at a time during the day.  She also doesn't sleep through the night.  Some nights she's up three or four times.  The pediatrician said it could be one of three things: one, maybe she's just gotten used to that schedule and I need to not feed her in the middle of the night and just try to get her back to sleep; two, maybe her medication is causing sleep problems; or three, maybe her epilepsy affects the part of her brain that controls her sleep cycles.  She said just keep trying and maybe eventually she'll get on a better schedule.  Not enough sleep for Mommy in the meantime!

National Epilepsy Walk

I'm fundraising for the Epilepsy Foundation in honor of Lizzie. If you'd like more information or to make a donation, please click on the link.
http://giving.epilepsyfoundation.org/site/TR/Walk/walk?px=1655242&pg=personal&fr_id=1920

Thanks for all your support!

Quick update

Lizzie went to the pediatrician this morning.  She had been really fussy the last few days and pulling at her ear a little, so I thought she might have an ear infection.  Turns out she was just getting her first two teeth!  They hadn't peeked through her little gums last night, but overnight they made an appearance.  The doctor said no ear infection, and Lizzie weighs 16 lb 8 oz.  All is well!

Long update

A belated Happy New Year to all of you!  I apologize that it's been a while since I posted anything. In the last week or so a lot of people have been asking how Lizzie has been doing. Thanks for checking on her, everyone! I guess it's time for an update! 

Lizzie started rolling over from back to front just a few days before Christmas. Not only did she learn how to roll over, but she quickly figured out that rolling could be a means of transportation. Several times she even rolled herself under the Christmas tree!

A few weeks ago, Lizzie had an ear infection. She was at the pediatrician on January 7th and weighed 15 lb, 2 oz, which means she put on exactly 2 lb in one month! She's definitely putting on weight well! Dr. C prescribed her an antibiotic for the ear infection and it seems to have cleared up.

Lizzie has been trying lots of new foods.  She loves oatmeal and bananas, but she's also had squash, carrots, and applesauce.  Squash was not a big success, and the carrots and applesauce were so-so.  We just tried pears tonight, and I wasn't surprised when she seemed to think they were pretty tasty.

Lizzie had an appointment with her neurologist on January 16th. Going into the appointment, we wanted to ask about Lizzie’s development. We haven’t seen a lot of serious delays, but there have been some little things we've noticed. For example, she didn't roll over until she was almost 7 months old. Now, she's almost 8 months old and still doesn't sit up very well when unsupported. Overall, her movements seem less coordinated than we remember in babies of this age; they seem more like the movements of a younger baby. We've also noticed that she doesn't babble the way most babies do at this age. She coos and gurgles, but she doesn't make any of the repeated "ba-ba-ba" or "ma-ma-ma" types of noises. We told Dr. K about what we've been seeing, but he didn't seem surprised or concerned.

The nurse weighed and measured Lizzie when we first got there. She's 15 lb, 15 oz, which puts her at the 22nd percentile! Dr. K said that Lizzie looks pretty good. She tracks things with her eyes, makes eye contact, passes toys from one hand to the other, smiles, and coos—all things that they want her to be able to do. He said that she has good head control and good muscle tone. He said that it’s very unusual for a baby to be doing so well in such a short span of time from the EEGs that looked so serious (in September).

Dr. K said that her most recent EEG, which was in October, showed a lot of improvement from the previous ones she had during her hospitalization in September. He attributed this to the anti-seizure medication doing a good job of controlling the seizures. He did say that the EEG showed slower brain activity on the right side of her brain. We asked what that meant, and he told us it meant that the right side of her brain is not functioning as well as the left side. He said this would result in some developmental delays, which he pointed out we we were already noticing. However, Dr. K said the positive thing is that even though Lizzie is a little behind most babies her age, she is still making progress. He said that doctors get concerned when a neurology patient plateaus for a long time or regresses. The fact that Lizzie is still making gains is a very good sign.

Dr. K would like to run a test for pyridoxine-dependent epilepsy.  It's very rare, but because Lizzie's been doing so well on the combination of medications she's on, which includes pyridoxine, he would like to do the test.  Luckily, they didn't have to draw any blood because they still had some "on file" from her hospitalization.  It will be at least 6-8 weeks before we hear any results on that test.

Dr. K would also like to run a genetic test on Tom and I.  One of Lizzie's genetic tests came back showing a benign variant on one of her genes.  Dr. K said that a benign variant would most likely not cause her epilepsy.  However, there's a lot they don't know, and if they test Tom and I and find out that neither one of us carries the same benign variant, it means that somewhere along the way Lizzie's gene had a mutation, and then they would look at that more closely as a possible cause of her seizures.  Dr. K's office is going to find out if our insurance will cover that test and get back to us.

Dr. K will tentatively plan to run another MRI on Lizzie in about a year.  She had one while she was hospitalized in September, and they said it looked normal.  Even so, Dr. K said that the brains of infants sometimes do not show abnormalities very clearly on an MRI, and one possible reason for the slower brain activity on the right side of her brain might be due to a structural abnormality or a lesion.  By waiting until she's a little older, they should be able to get a clearer picture, and if there is something there, they should be able to see it better at that time.

So.  We got some questions answered and now we have more, so the waiting game continues.  Overall, it was a really positive visit.  It's good to know that her neurologist thinks she's doing so well!

Lizzie has been practicing sitting up. She doesn't have a lot of strength in her trunk yet, so she doesn't stay upright for long. She'll sit for a minute and then she kind of folds herself over forward so she's touching her toes. Her OT came to see her on January 17th and gave us some more ideas for working on her core strength, so we've been using those some. When Lizzie lies flat on her tummy, she frequently pushes herself backwards with her arms.  In just the last few days, she's been pushing herself up onto her hands and knees and rocking back and forth, so she may be crawling before too long.  Her OT comes again on Monday, so we'll see if she has any thoughts on that.

I talked to Nutrition at Children's Mercy to see if we needed to continue adding the formula to the pumped breastmilk she gets, and they said that because she's gained weight so well since they last saw her in November, we don't need to continue adding the formula.  We will schedule a follow-up appointment with them so they can check her again and make sure she's continuing to gain well.

Right now Lizzie is doing so much better than we thought she might be based on what the doctors were telling us back in September.  We want to thank everyone again for your prayers and kind words.  We appreciate all of you who ask about her and tell us that she's still in your prayers.  We will continue to keep you posted as we learn more, or if things change.