Snowed in

Ok, so we aren't totally snowed in, but enough that we have been staying in and keeping warm. We took Kylie out in the snow and were ready for her to experience the snow and cold weather for the first time. As always, we were more excited about it than she was. We got her all bundled up to the point where walking was a bit of a challenge for her...our little snow baby!

Since the snow was so deep in our yard, and she probably would have nearly disappeared after stepping into it, Matt got the sled out and pulled Kylie and I up and down the street. She liked the take off and seeing the big smile on her daddy's face as he looked back to see her reaction. All in all she was okay with the experience...not overly excited, and not upset either. Here are a few pics we got of her and each of us with Kylie all bundled up.

So, what about our apptmt in St. Louis? Matt talked with the scheduler lady there the other day and was asking some questions, along with giving some info about the VEEG we had done here a couple weeks ago. After much debate, we decided to hold off on the repeat testing. It is a huge ordeal to go through with your child and very stressful for everyone involved....not to mention the fact that we just did it a couple weeks ago. Following the testing here, Kylie was pretty fussy and needy for many days following, and it seems like we are just beginning to get past that, and not ready to repeat it all over again.

Also, it seems like we are not seeing the initial movements that got us all freaked out to begin with quite as often as we saw in the beginning (Nov '09). We have gone 12 days from the crazy side head tilt stuff we saw when we got home for the VEEG here, until the next time we saw her do anything suspicious like that again. So the chances of us catching her doing this stuff while hooked up is pretty slim. She has been doing some new things that we question, and some of them we think are just Kylie being her silly self. We are going to continue to keep a watchful eye on the princess (you know, the usual) and will be quick to reschedule if we see an increase in the odd head movements.

An added bonus that is not fun, is that the nice scheduler lady that Matt talked with mentioned that there is a great chance that insurance would deny the claim for her 4-5 day stay we were scheduled to have in St. Louis, since she just had the testing done at our children's hospital...awesome to know a second opinion with all the testing would be denied.

With all that said, we are ready for 2010 and pray that it will be a wonderful year with lots of smiles, cherished memories, growth and development for all of us, and fewer calls and trips to the doctor...you know, healthy child :)

Let it snow!

Yay...we got a white Christmas!! This is the first time we have had a white Christmas in the 10 yrs I have been here....well we had one in 2007, but we were in Ohio then and they didn't have any snow there...they always have snow.

Anyway, Kylie was definitely more interested in the presents that Santa left her, than she was with the presents for her birthday. She had fun with getting things out of her stocking. We would push something up so it was peaking out of it, and then she would go investigate and pull it out. As far as the wrapped presents go, she enjoyed taking them and stacking them on top of each other, and running away with them. We tried to tear them a bit and should would pull on the torn piece, but not much more than that. No worries, we had a good time watching her play with the boxes and throwing things around.

After cleaning things up a bit, we decided to rearrange some toys...put some up in her room and put others away. Well it was during that time that we thought to deflate her duck tub that had been in her room and pack it away. We put her in it for what we thought was the last time we would see her in it.....she loves it! Matt pushed her around the family room in it while she cracked up, and she has sat in it for quite some time several times today just playing in it. Check out the clip I got of her ride in the duck tub.





Below is a slideshow of some pics we took when we went downtown to Crown Center and went to the Crayola Store and then a bunch from Christmas.

Wishing you all...

a very Merry & Bright Christmas and a Healthy & Blessed New Year!

Kylie's Angel

I think the best gifts are those that are straight from the heart and are labors of love, so I thought for some time...what could I give as gifts that will remind everyone of our beautiful princess, and be something they can keep for time to come? I decided it had to be an angel, because sometimes I feel like that is exactly what Kylie is to us, our little angel that has brought us so much joy. With that said, I found a template for angel ornaments that can be hung for years to come.

Below is a pic of Kylie's Angel...note the extra set of purple wings, because it takes a special angel to watch over those with epilepsy. For those of you who do not know, purple is the color of epilepsy. I also added a card enscripted with the following:

Kylie's Angel

This angel is to remind you to pray for

Kylie and all other children and families

afflicted with Infantile Spasms. Please

pray for hope, peace, and healing.

I had great ambitions of making one for every person that was connected to us while we were going through everything, and all the families that I connected with for support via the internet. Unfortunately, my workshop of elves is only a staff of one, with hands that do not allow for much work like this. I just made a handful to send as gifts to some family, and one day I hope to make more when the time allows and let everyone be touched by Kylie's Angel.

Go figure

Well right now we are really stuck and feel very confused about the VEEG we just had. For one, we are not confident that a true event was captured. You see, you have a button to push when you see something suspicious, and they tell you if you are not sure it is one go ahead and press it...so we did. We also each time, we are not sure this is one, but we think it could be. That is all the happened the whole time, maybes, but no definites. We reiterated this to the doc and techs, and they said there was no seizure activity. That is exactly what we want to hear, but what if those maybes were all truly no? There is no way to know for sure, but when they say they are sending you home there is nothing more you can do. And what about the fact that there is no contd investigation on their part to determine what is going on with Kylie...you know, giving us answers so we can breathe.

Neither one of us (especially me...afterall, I am the crazy one) are sure what to do right now. You see, last night Kylie tilted her head to the side last night time and time again, and one time she almost fell over. What the heck is going on with our baby! I am soooo crying right now. Matt and I were like sick last night, because she did it more than we have seen her do since she started this on Nov 3...you know, the day before her 1st birthday. Go figure, she did not do any of this the entire time she was hooked up...so what do we do? where do we go from here? Going through a VEEG with your child is very draining emotionally, exhausting mentally, and stressful for Kylie and us. Can we put her and ourselves through this again in 2 wks for our apptmt in St. Louis or do we cancel it?

You just look at how sweet, beautiful, and silly she is and you ask yourself: am I doing everything I can for her? is she and will she be okay? I will leave with some pics, since I am not really in the mindset to keep typing about all of this.

Playing with mama

Napping on mama














After all the electrodes were taken off and I combed out as much of the glue as I could before her bath.

Poor thing. This is the lovely rash she acquired while she was in the hospital....our going away gift.

Some pics of Kylie after we got home. She decided not to nap afterall, so I thought I would make the most of her being silly and just running around and get some pics of her.

We decided that since Kylie resembled that of a Glow Worm with her head all wrapped up for the VEEG that she needed to have one of her own. Here are some pics of her with it. She loves it! Her face lights up with a smile when the Glow Worm lights up and plays music.

Home sweet home

Hey guys, we are home..yay!! I will do a super brief review of what we know, and then I am off to take a nap, as long as Kylie stays asleep. Right now she is making noises and kicking, so maybe a nap will come later. K, this morning we saw what looked like a pretty good replica of the odd head movement that we have been seeing...there is a possibility that it was because I had just turned a big light on in the room, and Kylie likes to look back and all around to find the source of light when she notices that one has come on. So that is a bit of a worry for me, that we didn't get a true account of what she has been doing.

Okay, so then we saw the doctor like 2 hrs after that, and he said that everything was normal and he didn't think a movement like that would be seizures. I am just praying with all my heart that the couple possible movements we saw over the course of the 24hr hookup were indeed what we have been seeing, and that we have the right info in hand right now. We both so much want this to be the end of EEGs and all that....without wondering if something was missed or if it is lingering out there in her future. I feel that there is still a hole there...there still needs to be some sort of explanation for what I see her doing. I know her better than anyone and I want to know what this is, and why it happens so my heart will continue beating normally and not shudder when I see these things.

I know some people will tell me to let it go, but to that I say no...she is my baby and I will never let anything go because I love her too much and want her safe and well and to have everything we always dreamed of for her...nothing less, because she deserves so much more, especially for all that she has been through and how strong she has been throughout.

So yeah, that paragraph above is a super nice precursor to anyone that wants to say anything to me about letting things go. So please don't... these are my feelings, and she is my beautiful, amazing little girl and I have a right to those feelings and to be protective...I'm her mom. (maybe this little note isn't necessary to some, but to me it is because people can say things that can easily upset me, especially since I am super sensitive).

K, umm...the doctor did say that since he did not think it is seizures at all...not from the video or EEG, that we would get Kylie disconnected and go home and that it could be one of many things as to why she does the head thing. He did mention that it could be some sort of tic that most kids grow out of. He didn't mention too much other than that. I will try and get a clearer picture on things when Matt gets home (he headed back to work), and will update further. Right now I need to rest and regroup a bit.

Thank so much for the prayers and following along. Love and blessings to you all!

Picture is Painted

Okay, so when you mind is going like crazy and you obviously can't sleep, what do you do...get back on the computer and upload some pics that can hopefully paint a better picture of what our little living area is like. Here goes:

This is Kylie playing while I hold the cords. The cushions that rest on the back of the bench by the window are serving as barriers to keep Kylie confined to the view of the camera. You can see that she has her toys on top of the cushions.





This was just cute. Kylie stacked her shapes on top of the arm rest to the recliner that she was napping in as she laid in my arms earlier today.





Here is a little shot of her and her shapes. That face is kinda sad...kinda like ok mom, can we go now.








Here is daddy on the outside of the fort, while Kylie is looking at her books. You can see the black case on the floor to her left. That can't go any further than what you see..must be close at all times.

You can see in this one that there is a little tv on the shelf behind and to the right of Kylie. We have to pay attention to it to make sure Kylie is visible to the camera. If she is not, we have to tell them to move it....sometimes we have to tell them a few times before it gets moved, or go out and tell the nurse.

The area you see here and in the pic above is the only place Kylie can play in. We are typically in it with her. Matt stepped out to play on the outside, and she was very attentive to him, so I was able to run out and snap these pics real quick before she moved.

Matt took a pic of the mini tv with me holding Kylie while she was falling asleep. What you see in the pic is what is on the screen, so not much room for movement...well there is after we ask them to move them camera again and again....she just moves so much when she is awake.

Still going...barely

Ok, so it is about 7:40pm, and Matt and I are both ready to be done with this. We were told that if she does her thing, they can stop it all and review everything, and then we can go. Problem is, we don't think she has really done it yet. It is sooooo hard to tell with the short leash we have on her, and trying to not get the cords tangled and watching her, and I'm pretty sure we are going to go nuts if we have to be here for a couple days. Oh yeah, that is another thing. Matt was told on the phone yesterday that Kylie will only be hooked up for 24hrs, but the neuro said we could be here as long as this Friday...what?!

I took pics of the little area we have, but aren't in the place to upload them right now. I will try to describe a bit of it. Ok, so Kylie's leash is about 3 ft long, and then it is attached to a bag that we have to hold on to. We need to make sure there is enough slack so that when she moves, it doesn't get tugged or pull....ha, fun trying to keep that up when she is always moving (amazing how much she can move in such a tight space...even more amazing that mom and dad can squeeze into the space with her), and the leash is so short. So needless to say it is difficult to see what she is doing when the set up is not so great, because we are having to focus so much on the stinking cords...ahhh!!

K, a bit of elaboration on the doc stuff. Oh wait, let me tell you what he said when we saw him again this evening. He asked if the two questionable movements we saw were what we are used to seeing...umm, kind of. See we can't be sure that what we saw, or kind of saw was it or not, because of how things are set up (hope you guys can understand how extremely difficult it is to pinpoint this stuff here..it can be subtle to begin with, but more so with things here). He said the 2 events were good, and said we would keep taping and he would talk with us tomorrow. Ugghh!! We asked if we could get a preview, and not have to wait until tomorrow, and he said that his review could change by then with the added footage and EEG stuff. So...we wait and wonder what he meant when he said the deal about those 2 events being good. Good that we think we got the odd stuff on tape and it is normal, or good that what they saw tells them something. I'm and kind of guessing it didn't tell them anything, since we are still taping and not the off chance that he just wants to see more.

So yeah, this sucks. By the way, Kylie is in her crib, so I didn't just abandon Matt and the mess of cords, and precious Kylie. We are praying that she can sleep in the crib. The cords are so short that they won't allow her to move around and flop from one end to the other, so we will see how things go. We have a tv screen in our room, so we can watch her there to make sure she isn't getting caught up in the cords or pulling on them.

K, elaboration on docs and their differing opinions will have to wait, I just don't want to type much more.

This is such a mental drain on us both. Just please pray that we can relax more and get the hang of this super short leash or cords better so we can really see Kylie and what she may or may not be doing, and that she does what we have been seeing over the past month, so they can tell us what it means, and so we can go home and Kylie can be free to run around.

Shhhhh....no cell phones allowed

Sorry I forgot to put this in the lsat post. If anyone has tried to call us or text, and has gotten no response....it is because we are not allowed to have our cell phones turned on while we are in the room.

Maneuvering around with Kylie is not so easy...not even close, so we won't have much chance to leave one another in the room with Kylie to make calls and be on the computer too much. I know, no fun to keep you all in suspense, but we will do our best...it will be much, much easier when the cords are off and we are home.

K, back to team Kylie :)

In motion

Hey everyone,

Well Kylie has been hooked up for a little over three hours now. We haven't really seen any of her typical movements, but 2 possible movements...you see, it is kinda hard to tell with everything attached to her head and the very little space we have for her to move around. We have the tv on for some background noise and it is up high, so Kylie tilts her head way back to look at it, and it is a bit tricky to know if she is turning her head back to see something she heard on the tv or if she is doing her thing.

Anyway, Kylie did a really good job getting hooked up. There were 2 people for the hookup process, so one was able to hold her still and try and keep her attention while we talked to the neuro. It wasn't our regular neuro, but it was one that we have heard of before. It is so interesting to learn that they can all have varying opinions on the whole IS thing and epilepsy and all that can potentially follow IS. I will try and elaborate more on that when we are back home.

Here are some pics we have taken so far. This is before the hookup. Kylie was looking up at the tv.



Kylie found a new toy in the room....hospital cup. Way more exciting than the big tote bag of toys we brought.

This is when Kylie took a nap. The cords aren't real long, and we don't have a backpack to attach to her...not sure if it is because they don't do that here, or if she is just too small to have one on. So we have a little pack with the cords that we have to carry around as she moves, and we are pretty much confined to either her in the crib (not possible because the cords get tangled and pulled on too much), or in the chair that you see me holding her in as she sleeps, or a mini play area that is blocked off and that is approx 5' x5' (it is kinda triangular shaped).

Close up sleepy shot.

Drinking my water, and chilling with dada.

Dada reading some books to Kylie

Kylie realizing mama is taking pics of her

Kylie talking and making silly faces at mama

Look at that smile! Yes, she has been smiling, and laughing, and being silly. It's like she doesn't really know what is going on...that is good :)

Gotta love that face

So we just had the EEG tech come in and ask if the 2 possible movements were typical to what we see at home, and well kinda, but maybe not. She said the neuro will come back by in a couple hours or so when he is done at the neuro clinic. So we will update later tonight.

Thanks for tuning in and stand by.

Red Alert!

Hey everyone, we just got a call about 2 hrs ago that Kylie's VEEG scheduled for March 22, 2010 got bumped up to Tomorrow at 10am. We are glad that it got bumped, but so not ready for tomorrow morning. Lots of "OMG, are we really ready for this?", and stress, and lots of crazy emotions (not just mama, but dada too), and what to bring, and many other thoughts and stuff scattering about in our heads right now...the thoughts alone are exhausting. I totally reall like I am running in circles right now.

So please please pray that the odd head stuff that we have been seeing for over a month now happens a few times during the 24hrs that she is hooked up. That way we can say okay, that is what we are concerned about and they can tell us if there was any abnormal brain activity during that time. We need to know what this stuff is or isn't. There are some days when Kylie does not do it at all, and other days where we see it a handful of times...so far today, nothing.

K, I need to get back to figuring out what we need, what can't be packed until after bedtime tonight, and then after morning time tomorrow.

Prayers are appreciated....prayers for Kylie to be so brave and strong, and prayers for mama and dada to be strong for Kylie and each other.

An artist's work is never done

As we know, art comes in many forms and Kylie is definitely experimenting with many of them lately. Below you will see her making her mark with some crayons on a kid's menu at Applebee's. We have tried with her a couple times to see if she will imitate our movements by marking on the paper, and she would normally try to eat the crayons....well not anymore...she is making her mark :)





Here you will see some body art, or some face painting at the least. Actually this is the result when I let Kylie take hold of the utensils to feed herself some spaghetti. I would load it up with food and pass it off to her...she was too cute. As you can see in the last pic she was quite proud and having a good time.

Lastly, she may be into some sort of new fashion trend with this one. She loves it when we put her Snuggie (what we call her blankie) or a sheer scarf on top of her head. She will get a huge smile on her face, because she knows it is silly and will run around smiling and looking over at us to see if we are watching her be silly. She is a goofball, and we love it! If the Snuggie falls off or if we take it off to readjust it because it is obstructing her view, she will protest for sure. The pictures aren't the best, but they do a pretty good job of illustrating what she does.

Been awhile..

So, it's been a bit since our last post. Let's see, we took Kylie to see Santa Claus, and she was definitely not a fan. Santa tried giving her to Mrs. Claus, but Kylie wasn't having that either....so we got a pic of dad holding her with Santa, and she still wasn't the happiest. It was quite evident that none of those pics would be on our Christmas card this year, so I dressed her up and got out some Christmas ornaments and decor to entice her with for some at home shots. It is not the easiest taking pics of a toddler....yes, she is a toddler now, and it is amazing how fast it has gone, and kinda sad too. Anyway, she moves so much, and it is almost impossible for her to sit still or get a pic of her smiling....usually she is all sorts of excited when she is smiling, so she is wiggling and flapping the arms in excitement, and that produces nothing but a blurred image. Below is a little slideshow of some of the moments when we were out and about to see Santa and some at home shots.

Below is another slideshow of some random pics we have taken of Kylie. As you will see she loves the dishwasher, and digging through the kitchen drawers to take out potholders, and just about anything she can find. I love the one pic where her face is a bit scrunched...like she is contemplating what to take out next. It is fun and kinda nice that she can find things to occupy herself when I am trying to work on dinner or cleanup or whatever, but it can be a bit hazardous with the random things she throws everywhere...so always on my toes :)

Let's see what else is new. It seems like it has been a couple of few weeks where Kylie will walk up to us and reach up with her arms on our legs, and then look up and kind of yell at us...that is her way of saying pick me up. That's kinda what makes us feel more like mom and dad...having those little arms reach up for you to hold them. Too sweet! She learned sometime last week how to stack one block on top of another...apparently it is one of the milestone markers to work towards. She is beginning to learn more of the labels of her toys and such....if we say where is your baby she will go get it, and then we will ask her to give her baby a hug, and she puts it to her head...I love when she does that! She knows where her belly, and head are...she has known her belly for a bit now, and just learned the head yesterday. She will dance if you say "dance, dance, dance" and clap when you tell her to. It is just getting even more fun to see her interact so much and learn new things.

One of her favorite new games is not just chasing her around the loveseat, but for one of us to sit in the loveseat with her and then the other one sneak up on her and try and get her.....she goes nuts when we do this! She gets so excited climbing all over whoever is on the couch with her and running over us, and just squeals and cracks up. It is our favorite too :)

We haven't posted this info yet, but some of you know that on Nov 3rd (the day before Kylie's 1st birthday), I saw her doing some not so normal things with her head, and her eyes deviated, and needless to say it was a very scary few moments for me. I instantly knew it wasn't anything normal or anything I had seen her do before, so I quickly grabbed the video camera and started recording. I was crying as I filmed these odd episodes and grabbed Kylie and hugged her once I stopped recording. I have seen enough different seizures through my own research and efforts to better educate myself on what could follow IS, so I knew this was something to be concerned about. Once I got the video uploaded and onto a viewable site, I sent it off to some neuros and we got some conflicting interpretations: all but one doc said it was definitely not normal and it was something that needed to followed up on with a VEEG to rule out or confirm seizures. Unfortunately the one doc that was not concerned is Kylie's neuro, and our children's hospital can not get her in for the test until March 22nd...yep, March 2010. So we will be trecking to St. Louis Children's Hospital for the test, and our doc here told them he wants her to be hooked up for 4 days. Oh my goodness, I can not imagine having her hooked up that long, and she will not be able to leave the room and she will have her head wrapped up with all the wires hooked to her head, plus be in a new environment...and a hospital at that. It will be tough, but we need answers. She has had 1 day where I saw her do it time and time again, but typically she will also have days where we see it a handful of times, or not at all. We are hoping that these odd movements or episodes are present when she is hooked up, so they can tell us if anything abnormal shows up when she does them. If she does them early on, then chances are she will not have to be hooked up for so long.

So yeah, as the date gets closer I will post and ask for some prayers for our trip to St. Louis, and let everyone know how things are going. This is so hard because so many think we (me especially, mom) are just being paranoid or that we need to stop thinking that Kylie is like other kids with IS or whatever. If you have not been in this situation, you can not truly understand how difficult, draining, and overwhelming things can be. This isn't like other diseases or things where there are a great number of stats that give you a clearer picture of where your child will end up or how things will turn out...every case is different so there is a lot of unknown. It isn't easy having a child that has been through something as crazy and unpredictable as IS, but we are doing the best we possibly can and want to make sure Kylie is okay, and we will do whatever it takes to assure that. If that means mom and dad are crazy until we know different, then that is okay, and we know we will get through it. We will deal with things the best we know how, and do what we can to remain grounded...Kylie makes it easier with how silly she is and all the smiles she gives us. She is amazing, and I can not say that enough. Being her mom and dad is the best gift we could have ever received. God loves us so much that he gave us the beautiful, amazing little girl, and nothing is greater than the love He has for us.

So yeah, that is our update for now. Enjoy the pics and everything along the way :)