Tuesday, June 30, 2009

EEG #5 Results

Well yesterday we got part of the results for Kylie's EEG #5, and were waiting for some clarification on things today. Matt had spoken to a new nurse at the Neurology Clinic, and she wasn't familiar with Kylie or her case. She read the results to Matt and the best part of it read "essentially normal." I don't think anyone that doesn't have a child with a diagnosis like Kylie's can truly understand how wonderful it is to hear the word normal. There were some other things that were said that Matt didn't quite recall. Of course this had me worried...I wanted to make sure we had the whole picture here and not just the frame of it. So we waited for our pediatrician's office to call us with the end half of the results today...

...Evidentally the other part of the results are still unknown as far as the terminology that was used in the dictation (that's the part that Matt didn't quite remember or fully understand), but the neuorologist that gave the results to our ped's office said that it was a good EEG overall. He told our ped's office (who then told us), that the remainder of the dictation was only noted because of Kylie's history, and would not have been noted on an otherwise healthy, typical infant.

Whew! So that tells us that Kylie's change in appetite is apparently not a result from something going haywire in her little head, which is really good news on many fronts. One factor, one Huge factor has been eliminated, so that is great! Kylie is still back and forth on how much she wants to eat, or if she wants to eat. Every feeding is different. I think yesterday was the first time since she started this hunger strike where she actually held the bottle during her feeding...we had typically been holding it for her while holding her arms down (to keep from pushing it away), so this was a big sign of improvement. Way to go Kylie :)

Definitely the most difficult thing about whatever goes on with Kylie is the fact that we can't exactly dismiss anything as typical baby things, or ever assume that whatever changes she has are of no or minimal concern. Everything is something until proven otherwise. At the same time, every milestone Kylie has is quite the celebration. We get to celebrate things that aren't written in the books for typical milestones. We have so much more to be thankful for, so many more moments to cherish! For that we are eternally grateful...thank you God!

Monday, June 29, 2009

Electroencephalogram, Defined

We've made quite a few references to EEGs over the past few months, with the results of these tests being the primary method of seeing neurological improvements. However, we also realized that most folks don't have any idea what an EEG is. So with our last appointment at the Neurophysiology clinic, we decided we'd take some pictures so everyone can see what the little lady has to go through.

First though, here's what WebMd has to say about Electroenchepalograms:

"An electroencephalogram (EEG) is a test that measures and records the electrical activity of your brain. Special sensors (electrodes) are attached to your head and hooked by wires to a computer. The computer records your brain's electrical activity on the screen or on paper as wavy lines. Certain conditions, such as seizures, can be seen by the changes in the normal pattern of the brain's electrical activity."

Here's what goes on when we have an appointment for an EEG:

We typically show up about fifteen minutes prior to the scheduled start to get checked in. Then our technician comes and gets us from the waiting room and she works on getting Kylie all hooked up, which is a fairly involved process that probably takes twenty to thirty minutes. First she marks up Kylie's head with a red grease pencil to determine where each of the twenty-six electrodes will be placed.

The electrodes are hooked up to a computer which reads the brain activity. Without getting too scientific, a normal EEG looks something like this. That is, if this picture from Mass General is correct. I don't know, I'm not a neurologist!


Below is what an abnormal EEG looks like when hypsarrhythmia (chaotic brain wave activity) is present. This is the most commonly found EEG pattern associated with Infantile Spasms.


There is also a camera hooked up so that any physical seizure symptoms can be noted.

The technician then places each electrode on Kylie's head with some glue that helps keep everything in place - it really stinks too! Then she injects some goop into each electrode, which helps transmit the electrical activity. After all that, Kylie gets wrapped up in guaze to help keep everything secure.

Remember that prior to each EEG we have to sleep deprive her for about five hours so that she'll fall asleep during the test itself. As you can guess, Mom and Dad also get sleep deprived! The sleep deprivation has to do with getting a more accurate reading during sleep. Needless to say it's usually (but not always) tough to keep her awake before the test starts. As you can see by the picture, she's pretty pooped as she's getting ready for everything to get going!



So during the test (if everything goes according to plan) she sleeps for at least ten minutes, and usually no more than twenty or so. Then we wake her up and flash the "party lights" in her face. This is a strobe light where the flashes get faster and faster until the flashes just about turn into a solid light. This is to see if she is photosensitive - obviously if she is, then these lights can induce a seizure.

After that, it's time to get up and get all those yucky electrodes off. Here she is after waking:


What a cutie! She's such a little trooper.

After all that, the Neurophysiology clinic sends the readout up to the Neurologist. Within a couple days after that we usually get the results ourselves.

Friday, June 26, 2009

Everything in between

Well, in addition to Kylie's diagnosis with IS and the crazy times with the ACTH, other things have happened along the way. I will do my best to keep things in chronological order, but things were pretty much a blur during a lot of that time, so bare with me here:

Teeth

In addition to being on the ACTH that makes a little baby incredibly fussy and inconsolable, Kylie erupted some new teeth. Not one, two, or three teeth throughout this process, but six!! Yes, that is right, she had six new teeth come through, so we got totally whammied with the ACTH and all of these new teeth popping through left and right. Let's see, we started the ACTH on April 18th, and she had a new tooth come through on April 23rd, then another on May 10th, May 14th, May 25th, and the last of the six showed up on May 31st.


Holding her own

I don't have a date for this one, too crazy with all the teeth and everything else, but Kylie started holding her own bottle during her feedings. It was so cute to see her holding that bottle, and then tipping it back to make sure she would get a good flow...just so cute! She is getting so big, so quickly...and not just the chunky-ness of the ACTH, she is growing up. Our baby girl isn't quite the baby anymore.


Sitting Up

I know we did a post of this one, but I needed to add it to this post too. Kylie learned how to sit up without any support from mom or dad. It was just awesome to see her doing something so big! She hit another milestone, and that is just a big sign that she will beat this IS thing and overcome. Not having any developmental delays prior to the diagnosis, and the fact that she is continuing to develop so well is a total blessing...just greater celebrations for us all!


First Cold

Despite all my sanitizing and mask wearing, little Kylie caught my cold the last week in May and had an icky nose for about 2 wks. From the moment I felt a sore throat coming on I began wearing a mask, and doing even more handwashing on top of the already extra handwashing I had been doing, but my bugs some how got to her. She was soo cute when she would take her bottle during the time when she had the icky nose...she would milk the bottle (she would squeeze the nipple with her hand to make the milk come out faster so she wouldn't have to suck) because it was too hard for her to drink with a snotty nose. She is a smart cookie for sure :)

Bouncing/Jumping Baby Girl

Goodness one of Kylie's most favorite things to do is bounce and jump around in the Johnny Jumper that we hang in the doorway. We posted a video of this with a misc update, but boy it is so cute. That clip is the first time she was in it and started bouncing around, but boy she has quite the ups now. Here is a clip taken of her jumping skills from earlier today.

video


More Foods

Okay, so about a week before Kylie's diagnosis we had decided to take a break from solids as she was not having the best reactions to them. It was during our week off, when things unfolded. Anyhow, since the ACTH can cause blood in stool, and that is also a possible reaction of a food allergy, we were holding off on reintroducing them. After talking with Kylie's pediatrician about my concerns with it being forever (at least it seemed that way) until she would be back on solids, we asked what foods would be safe to try while still on the ACTH. So, on May 19th Kylie got to eat carrots again...woohoo! It is one of her favorites...also part of her celebration lunch and dinner on the day of her last shot of ACTH, along with some pears, and turkey rice.

Other Stuff

Well, about a week before all of this I had went to the doctor for postpartum (4/6)...it was just a few days before my apptmt when I learned of so many other women that had went through this. Hmmm...maybe if I knew it were so much more common than what I had initially thought, I would have gone sooner (it's just not something that many women talk about openly until you mention how crazy you have been feeling). Oh well, I was going and that was the most important thing. My doctor decided to order some labs to check my thyroid levels. Later that afternoon I got a call from my doctor, yes my doctor called me, not the nurse and she said that my thyroid was not working at all and I was exremely hypothyroidism. I was like oh, ok. She said that could explain a lot of my fatigue, depression, and so on. I had to go back the following day for additional labs, and then I was started on Synthroid (synthetic hormone replacement).

When I started to feel like I was getting sick (woke up with sore throat), I called my doctor, because I knew we really couldn't let Kylie get sick with her being on the ACTH. Since my doctor was not in I got to see another doctor, and I asked if I could just get my blood drawn to check my thyroid since I was due to come back just a couple days later. She said that was fine. Well, after her asking more questions related to my thyroid stuff, she added additional labs to be done, as she suspected I had something called Hashimoto's Disease. It turns out she was right...why not, we have nothing else unusual going on in our lives right now...ha! Just click on the link and you can learn more about that...basically it's an autoimmune deal where my body is attacking my thyroid. So I will be seeing an endocrinologist for all of this...my first appt is July 9th. Since I have been on the meds I have definitely had more energy, and feeling more like a person. I can't wait to see what I can really feel like (what I am supposed to feel like) once we have me on the right dose of meds...I will be like super mom or something :) This deal is like nothing compared to everything else that has gone on, but coupling it with having your first child and Kylie's diagnosis of IS, it is not cool..bad timing for sure.

I also had a birthday (4/24), my first mother's day, our 3rd anniversay (6/3), and Matt's first father's day. We do pray that next year we will be able to celebrate these special days without a hitch.

Well, I think that is all that had taken place throughout our course of ACTH. Be sure to tune in again, as life is always happening :)

Thursday, June 25, 2009

Daddy's little helper

While Matt was doing a bit of work from home yesterday morning (since we had the EEG...no results yet, possibly not until Tuesday.), Kylie decided she would offer dad some assistance.


It's as if she is saying, "Mom, can you just leave me be, I am trying to work here....as soon as I can get to the mouse that is."


You can see the beginning's of excitement as she finally got the mouse!


Umm.. I don't think that is how you are supposed to click the mouse Kylie..lol


She's just got the expression, as if I was interrupting the hard work they were doing. Too cute!


This is where she was showing her daddy her computer skills.

Tuesday, June 23, 2009

Hunger strike?

Well our little pumpkin is deciding she doesn't want to eat much lately and we are not sure what the cause is. She has also been sleeping a lot more and either pulling on her ears, or the back of her head on the left side, and getting upset easily. We have no idea if the extra sleep and getting upset so easily is due to coming off the meds, or what the deal is. She started all of this on Sunday, and is either not nursing, taking a bottle, or eating her solids (any combination of those).

Let's see on Sunday, she had a total of 10 oz of my milk in a bottle, nursed for 2 minutes, and had a total of 1 jar of solids. Monday, 6 oz of my milk in a bottle, nursed for around 10 minutes, and 1/2 jar of solids. We are still working on today, so I won't post those stats. Hmm...this is odd to say the least since she is such a good eater. Matt called the pediatrician yesterday and they had us come on in...

...well, we visited the pediatrician (6/22), and everything looked normal, except for a red throat. We are hoping she just has a sore throat and that nothing more serious is going on. The ped's office contacted the neurology clinic, and they ordered some additional blood work to check her sugar and electrolytes and whatever else...this would let them know if her adrenal system was okay (the injections of ACTH causes the adrenal system to work harder and pump out more cortisol, so there was a possibility that her adrenal system was out of wack with recently coming off of the ACTH). Her labs were good..woohoo!! The neurologist also ordered an EEG for Kylie and that is scheduled for tomorrow at 9:30am.

Today I tried a sippy cup, and she got about 1/2 an ounce of pedialyte, but then she spit it back up. I think she only drank from the sippy cup because it was something new, and then she was quickly disappointed that it wasn't a new toy...just mom trying another avenue to getting some fluids down her. We tried a popsicle at lunch time, and she liked it for about 3 seconds, before deciding she didn't want that either. Oh, and we tried a syringe too..no way. At her 4pm feeding today I tried some of my milk in a cup and she drank about 3 oz (well, I'm sure at least 1/2 oz or more ended up down her chin), she was trying to chew on the cup most of the time, but also she kind of liked that she was getting some nourishment out of it..at least I liked that she did. So no idea what's going on right now, just praying it is nothing serious.

Our ped's office is having us call in and let them know what her intake is. We do pray that we don't have to get admitted to CM or anything like that to get fluids in her. Oh, baby girl you are so sweet and still smiling away, but how about a bottle so mom and dad can breathe a little easier.

Monday, June 22, 2009

Father's Day

Okay, since I know Matt loves cookies I decided to make him a giant cookie for Father's Day. It was a bit modified since I thought I had 2 half filled bags of chocolate chip cookies...apparently I was wrong, one of the half bags was chocolate and the other was butterscotch. That's okay, it was a new creation, a special Father's Day creation :) It was perfect, because everything we have been through has not been quite what we had in mind, but things are working out and we are adapting along the way....just the same, the cookie is getting eaten too :) And yes I decorated it too!



Matt got an early Father's Day present from Kylie on Saturday. She was in such a laughing and gigglig mood, it was just so much fun! Pretty much anything either of us said it did, she would just crack up laughing...she has never done that before. I finally broke away from the fun, because I really wanted to capture some of this time on video. The video is a bit dark, sorry, not enough light in the room (and a light for our digital recorder is close to $100, so needless to say we won't be getting that anytime soon)...that's okay, you don't need light to hear her laugh, just your ears and your heart. An additional Father's Day gift from Kylie was that she slept through the night for the first time in forever..we honestly can't remember the last time she slept through the night. She went to bed around 8-8:30pm and got up at 5am! Way to go Kylie baby!!

video

Matt is absolutely a wonderful daddy for Kylie! He will do anything for her, and just loves her to pieces! He has come home for lunch every day since all of this started, so he could hold Kylie down for me when I had to give her the shots, and then finish up her feeding. I love nothing more than seeing the two of them together and the best is when she falls asleep in his arms and he is just sitting there watching her or falling asleep himself. Soo precious! Such a wonderful dad!! Kylie just adores her daddy too...smiling every time she sees him and always watching whatever he does. He is so great to take her on walks around the neighborhood or just going outside so I can have a bit of quiet time, or time for me to get caught up on things....amazing daddy and hubby! Matt is a very involved daddy and so proud of his baby girl...she is incredible, so she makes it easy :) I am very grateful for all he does, and just love him so much! Thank you for everything you do as a daddy and hubby!!

Thursday, June 18, 2009

We Did It!

We are all done with the shots of ACTH! It is amazing how in the beginning it seemed like we were never going to get through this, and here we are 9 weeks later and No more shots! Kylie you are absolutely a star! You have been through so much in your 7 1/2 months of life...as daddy says "you are our little hero." We love you so much honey...you have definitely shined your bright smile upon us and helped us get through this :)

The first couple weeks were definitely a very scary time for us, and we just didn't know how we were ever going to get through it all. Every time you had a seizure it broke our heart to see you little body going through something so scary, something that doctors can't explain, something that we can't prepare you for and explain to you because you are so small. All we could/can do is love you and pray that you will be healed.

The effects of this medicine are unpleasant to say the least...much more serious than we ever knew or imagined (it can take the life of a child or help save it). The fussy times were just insane...I think the warning should be "crazy and inconsolable," fussy is an understatement. Our poor baby was just terrified during those moments (you could just see it in her eyes), and there was nothing we could do to comfort her. All we could do was just hold her and love her and let her know that we were there for her no matter what...we were in this together. It's just something no parent should ever have to go through. We are still hoping for the nights when she can begin sleeping through the night..for her sake and ours :) The tolerable effects of the meds were, weight gain, puffiness, and acne. She is still a doll and the sweetest, most beautiful baby in the world! How could anyone not love this face!

Before and After ACTH

It is still very surreal to think about what we have gone through and about how I will no longer have to draw up her meds and get them ready, and have a sticking station set up in the kitchen. It had been part of our routine for what seemed like forever, but now it is behind us (boy did that go fast!). The pic below was taken today, just before her last shot.

It is our prayer that Kylie is healed and this chapter in our life is closed. All of this has definitely made us stronger, and definitely put our faith to the test. Times like these make us realize how small we are and how everything is out of our hands, but in the best hands of all, God's. With that said, we are enjoying every moment we have, and taking things as they come...just gotta keep on moving forward and truly live life. God Bless!

Wednesday, June 17, 2009

Tomorrow is almost here...

This has definitely been quite the journey for us all. I imagine everyone has a picture of what they want for their family and how things would go. I have been looking back at all of the blog posts leading up to Kylie's arrival, and through so many of the pictures we have taken since she was born. Most of the photos and posts match up with the happy moments we always dreamed to have for our precious Kylie...

...I don't think anyone would ever expect to have pictures or blogs detailing the crazy times we have been through with her diagnosis of Infantile Spasms. Sometimes I can't help but wonder if this has all been a bad dream (okay, nightmare), and soon we will wake up and go back to the perfect dream that we wish for our baby, for our family. How did we ever get here?

We were devastated with the diagnosis, and thought every dream we had for Kylie was wiped away, and our world was slowly closing in on us. In the beginning it was incredibly difficult for us to see beyond the negativity and begin our new way of life with Kylie. Through lots of prayer and support we were able to pick ourselves back up and begin again. It's amazing how much more clearly you can see and focus when your head isn't buried in fear. Granted it was not easy, not in the slightest...we still struggle with it from time to time. We constantly had to go back to the list we created, to strengthen our faith. It was also important for us to learn more about IS and find people that either had first-hand experience, or ones that could really understand how serious all of this is. It is through their personal battles and renowned support that we have been able to move forward and be ready for anything that comes our way...lately that has been lots of smiles from Kylie :)

We've had a heightened sense of hope since her seizures stopped. I can't believe it, tomorrow is our last shot of ACTH. At first I wasn't sure how I was going to be able to give my baby girl a shot, and now we are quickly approaching the last one. Matt and I are beginning to get worried about what the days, weeks, months, and years ahead will look like for Kylie. She is utterly amazing and we are so glad that He chose us as her parents...we are the lucky ones! It is our prayer that this is the end of the seizure and drug road for Kylie...nothing but rainbows and smiles from here on out.

We know there is still a long road ahead of us, but He will help us get through it all. He is always with us, we just need to call on Him when we are in need, and remember to thank Him for all He has done and for the love that He has for us. No love is greater than His.

Tuesday, June 16, 2009

Almost Done

We are getting very close to being done with the shots of ACTH (Thursday, June 18th is our last one!). As you guys know, the meds pose possible issues with her weight, blood pressure, and stool, so we have been seeing Dr. Nelson (outstanding pediatrician) twice a week since we started the meds (April 18th) to make sure things are going okay. Well yesterday was our last visit for all of these checks, so we were filled with a mix of emotions. Excited to not go anymore, as it means we are heading down the right path that God has laid out for us, and no more ACTH..woohoo!! Sad, because it had become a part of our routine, and it was the Only place that all of us could go out together and be around other people...amazing people at that! No worries because in a couple of weeks we will be able to go out in public and show off our beautiful Kylie!


Since the ACTH compromises the immune system, we would wait with Kylie out in the hallway, to be away from any sick kiddos that may be in the waiting room. We consider this particular bench ours..still need to work on getting a little placard with Kylie's name put on it :)


This is our beautiful little ACTH chunkster! Some of the more tolerable effects of the meds are weight gain and puffiness. She has been a trooper throughout all of the visits, and is just an amazing little girl!

This happy fella is Dr. Nelson, aka Grandpa Bryan. Everyone at Johnson County Pediatrics has been just wonderful with all of the extra help and special care they have given us from the first time we walked into their office, through all of the crazy times with her bi-weekly visits. So a BIG thank you to everyone at Johnson County Pediatrics!

It is just awesome to see all of the caring and supportive people that God has placed in our lives throughout all of this...His love is truly indescribable, and we are so very grateful for the many blessings that He has bestowed upon us. He is always with us, with all of us...we just need to be patient, and listen to Him, and follow Him. He will never leave us.

Sunday, June 14, 2009

New Look!

Yes, you're in the right spot. This is Kylie's blog!

I hope everyone likes the new look. We just thought the old was was just getting tired. Actually, the reason I couldn't stand it was because of the "double window" when we posted a video. Drove me crazy! This one just killed two birds with one stone. It fixed the video problem and it looks so much cheerier.

One other kind of neat thing about this one: there's a search box. It's the little white box - although it's not labeled - above the slideshow with the little blue birdy in it. Not sure how much that will ever get used, but once we get into the millions of posts (ha!), it would be nice to go back and search for everything with "Children's Mercy" or something else. Click the little birdy to search!

We also added some new pictures to the slideshow. I think there is something like 25 now (compared to about five before).

A couple of other random things:

#1. Two posts back I mentioned that we'll have another EEG. That's scheduled for Wednesday, August 12th. We'll meet with Dr. Le Pichon that Friday, 8/14 at Children's Mercy South. Speaking of J.B. Le Pichon, he's in France from 6/19 through something like 7/12. I think he's really worried I'm going to try and pester him while he's there with non-important questions. Let's just put it this way, he knows me. So, when he calls me back, he proably makes sure there is nothing on his schedule for the next half hour or so. However, I really appreciate him taking the time to answer all of our questions.

So, some prayers on 8/12 and 8/14 would be greatly appreciated!

#2. Comments - we know a handful of people out there read this. We would love to know who you are and maybe how you found the blog (if you don't know us). You don't have to leave anything too thought out or in-depth. Just let us know who's out there. It's like little, mini presents for us when we see comments.

#3. We all know the Royal's stink. One thing they lead the league in?

Cutest fans!

Friday, June 12, 2009

Cutesy-wootsy

So, big props to the good folks at Fletcher Memorial Baptist Church in good 'ole Statesboro, GA. They have a ministry there called DOC, which stands for Depend On Christ (or, at least I think it does. I'm at work, so I'm going off memory here). Anyways, this ministry makes blankets.

Not just any blankets though, super-special-prayer-blankets.

You see, they not only make the blanket all cutesy-wootsy, but they also put it in the church for members of their congregation to pray over. A short story accompanies the blanket so the pray-ers know who, and what, to pray for.

Well, this particular ministry made a blanket for Kylie and Jody covers her with it every time she naps.

Here's a picture of little Kylie with it:


For those of you wondering the connection between us (in Lenexa, KS) and Fletcher Memorial Baptist Church (in Statesboro, GA), my cousin Bryan Bulmer is a pastor there.

Talk about good people.

I have no idea if anyone involved in the blanket will ever read this, but if you are, thank you so much! We have certainly found out first hand the power of prayer!

As an aside, you might have noticed that Kylie is napping on the couch and not on Mom or Dad. (Don't worry, she is nestled in her boppy, so she is safe from wiggling around too much). Over the past couple of days she has apparently learned to nap on her own (not requiring mom to hold her and rock her to keep her asleep). This allows Mom to move about the house or just chill. I'm not sure anyone understands how big of a blessing that is to Jody.

As always, thanks to everyone for all the thoughts and prayers. We deeply appreciate each and every one of you.

God bless!

Thursday, June 11, 2009

Miscellaneous Update

So, no news is good news.

Our last shot of ACTH is scheduled for Thursday, June 18...just one week from today. Only seven more shots to go! Yippee!

I talked to Dr. LePichon today - just about some random questions we had. The last time we talked he mentioned maybe getting her in for another EEG once she's off the medicine. Since that is coming up soon and he's going to be in France for the next month or so, I wanted to get clarification on when that EEG should be before he left the country. He said that we'll have to wait for the next real opening, which will probably be in August. He reminded me that Kylie had been getting special treatment, but since there is no longer a need (as of right now) to expedite the process, we'll have to get on the "regular" schedule. Fine by us.

We also talked about some of the stuff we'll have to look out for in the coming days, months and years. Without getting too much into specifics, it was a mixed blessing. As I mentioned before, what lies ahead could be terrible (Lennox-Gastaut), but is also something that will be hard to miss. I believe his words were something along the lines of "blatant, you will know something is wrong with your child". While that is immensely scary, it also put us at ease about having to watch, and therefore question, every little move Kylie makes. We also asked if catching "what could be coming" early on would be as helpful as it was with catching the initial spasms. He told us that for better or worse, it does not make a difference when these things are noticed. Jody breathed a huge sigh of relief with that news.

Lastly, here's a little snippet of Kylie's latest favorite game.

Bouncing...

video

Notice the cameo by me towards the end of the program. I'm awfully odd.

Thanks to everyone for all the thoughts and prayers. God bless!

Wednesday, June 3, 2009

Watching and Waiting

Watching and waiting is definitely what we have been doing a lot of lately. The first time I noticed something not quite right with little Kylie was April 14th...I haven't been able to take my eyes off of her for long since then.

It's a bit of a curse and blessing all wrapped together. A blessing for the obvious reason...my eagle eye, as Matt calls it, is what got Kylie a diagnosis and treatment so quickly. The curse because it is making me concerned about every little movement, and then afraid of what I may miss or overlook. Some people may think I am overreacting or whatever, but remember that if I wasn't this way, then Kylie would not have gotten treatment as quickly as she did. As her parents, we have to speak for her, and with something as serious as this, nothing can be left to chance...our baby's life is too precious. God made me this way for a reason...Kylie is the reason.

The not so fun part of about this ordeal..well, none of it is fun, but the most unfun part is that it is not over, and won't be over for a few years. The unknown is definitely the most difficult to deal with, but in our case we know what the unknown can be: Lennox Gastaut. You see, all parents worry about their children, and wonder what the future holds for them. The difference between us and parents of healthy children is that we know what could be, and it is scary.

This is not meant to be a post to report sad thoughts... this is the reality of what we are going through, of what we are dealing with right now, and what we need to be on the look out for. Is this mom and dad being more paranoid? Nope, we were told by Kylie's neurologist to look for anything unsusual, all sorts of different seizures, just anything out of the ordinary. Wow, that is a lot to be looking for, especially when babies do odd things, being first time parents...we are not totally sure what is normal, and there are so many different types of seizures to learn about and then to be on the look out for.

Matt called the neurologist on Wednesday, because I noticed Kylie staring off and not being responsive to me. I was concerned because this can be a type of seizure (absence seizure), where a person just stares off and is unresponsiveness. Our doctor gave us a couple websites to use as resources to teach us about the different seizures and what we should be looking for. Education is definitely one of the best things we can do...it will help us know what is more or less concerning in regards to her behavior. The doc also mentioned doing another EEG once Kylie is off the meds (12 more shots to go..woohoo!!), and he can see how things are looking.

One thing I have always said is "be where you are." That is sometimes not so easy when where I am is watching and waiting. We are doing our best to enjoy every moment with our beautiful girl, but we must always be on watch for anything unusual and try not to disregard anything. Whew, tiring to say the least.

We are praying all the time for Him to heal Kylie and for renewed strength for us. This is a long journey that has only just begun. It has almost been misleading in some ways, because in the beginning it was a clear MRI that we were looking for, and it has continued on to better EEGs and the meds stopping the seizures. Those were huge steps, but the beginning of many more that we must endure. The nice part of those steps is they were in timeframes that seemed much more reasonable or at least easier to handle (hours, days, weeks). The big wait now is seeing how Kylie develops over the next few years. We have been traveling on the right path thus far, and hope and pray that it continues not only for the next few years until we are out of the woods, but for many years thereafter. The journey is not over, but beginning in some ways. We have God right by our side, so we will get through it...we just don't know how many stops we will take along the way.
 

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