Wednesday, August 26, 2009

Go Royals!

So today (Wednesday) I took the day off of work and we headed out to "The K" to watch the Royals play the Indians. Big shout-out to Greg Schaum of 610 Sports here in KC for the awesome Diamond Club seats and Gold parking pass. Big time! Today's game worked on a few levels - first, it was against the Indians, who are Mom's original home team and it was a day game, which is necessary with an infant (well, ours anyways!).

First things first though, we were on TV this morning. Well, kind of. I emailed Don Harmon - the weatherman on Fox 4's morning show - to ask about the weather for today's game since there was quite a bit of rain in the forecast. Well, he mentioned us by name a couple of times and read my email on air. Again, we're so big time!

Anyways, we invited Nurse Rosemary and her husband, John (who, coincidentally were celebrating their 37th wedding anniversary today!) to the game. We met here at the house and then headed out to beautiful Kauffman Stadium. For those of you that don't know us, I'm a huge Royal's fan, but with Kylie's diagnosis in mid-April, we haven't been able to make it to a game until today's.

Once we got out to the stadium, our first stop was at Guest Services to get Kylie's certificate of fandom. She'll be burdened with being a fan of this laughable franchise for life. Kylie, I'm sorry that you weren't born in New York or Boston, where your team has a legitimate chance of post-season play every year.


Man, the renovations to Kauffman are amazing! The exterior of the stadium, the concourses, the "outfield experience" (more on that later), everything is so cool. That Diamond Club is sure something too! You can sit in those nice padded seats in the sections right behind the plate (behind the uber-fancy Crown Seats) or you can go into the club itself, which is air-conditioned with its own concessions. Pretty darn slick. Here's a picture of Mom and Kylie, just as the game was beginning:


A co-worker of mine is friends with the White Sox mascot, so she asked this person to get in touch with Sluggerrr (apparently MLB mascots are a tight-knit fraternity) and see if he could come hang with us and meet Kylie. Well, he did, and it was awesome! Big thanks to Bobbie Harsch for the hookup there.


Unfortunately, Kylie is going through the stranger anxiety phase, so a 7-foot tall lion was just a little too much...


After hanging in the Diamond Club for the first seven innings or so we walked all the way around through the new "outfield experience" which provides such a cool view from the outfield. It's was a really odd experience since that was something Royal's fans haven't been able to do until this year.

While out there, we snapped a picture of Rosemary and John. 37-years...congratulations!!

The Royals lost 4-2, so Mom was pleased her team came out on top. I'm pretty sure Kylie didn't notice there was a game going on, let alone who won.

She did an amazing job today. I thought we'd probably stay for maybe half of the game before she got fed up with being there. When I looked up and saw it was the 8th inning I was shocked that we were still in attendance and the baby was doing fine. Kylie did a great job and we stayed until the final out was recorded!

Wednesday, August 19, 2009

Sweet words of love

Kylie has repeated a few things we have said, but we never got it on tape...until now :) Some of the words she has repeated are: hi, mom, momma, and I love you. Of course this is all in baby talk...the sweet talking that we love so much, and can never hear too much of. Here is a little snippet of her saying I love you. She says it pretty darn clear, and then kind of says it again at the very end. Enjoy the sweet words :)


video

Tuesday, August 18, 2009

IS and Vaccines

Well, now that we are in the clear and Kylie's immune system is well back on track, we have to think about her being vaccinated, or not, or somewhere in between. I've read stories about kids with IS and how everything unfolded shortly after being vaccinated. In others, seizures had come and gone, only to have them reappear shortly after vaccinations. Of course this just frightens us, as we do not want to make the decision to get her back on track with her vaccinations and then find out our decision brought back her seizures... and robbing our baby of the life she could have.


It seems as though the DTaP is the one that has the most negative effects, and we have already decided to discontinue that one (she's already had two boosters), but what about the rest of them? It seems like so many have the potential, yet rare side effect of seizures, but isn't IS rare too?! Not vaccinating could cause her to get an illness that could have otherwise been prevented. So what does a parent do?


So this post is 1) to voice the decision we are currently faced with and 2) to get the input from IS families that have gone through this and how they made the decision.


So IS families only please, let us know what you have done, and how you reached your decision. We aren't looking for someone to make the decision for us, just wondering how you were able to weed through everything and make a decision.





Just over 2 wks old

Friday, August 14, 2009

Now we breathe...

Well today was a big day for us. One we were waiting for with excitement and well, anxiety too. Dr. LePichon came and asked how Kylie was doing: crawling (yes), feeding herself (yes), playing peekaboo (yes), talking (yes), pulling herself up (yes), seizures (NO!!) Looks like our baby girl passed one of the biggest, most important tests of her life..okay, now I am crying! But they are good, happy tears :)

Then he said he would be right back so he could take a look at the EEG she had on Wednesday... what? he hadn't looked at it yet. So of course, we held our breath until he came back to the room. He said he wanted us to take a look at it. He showed us and from what we could remember from our wonderful research, we could see that it looked okay...but hey, we are no experts. Actually it was better than okay, Dr. LePichon said "It's stone cold normal." In case you missed the translation on that, it is abosultely AWESOME!! NORMAL



The last couple EEGs she had were essentially normal, but with some abnormalities... abnormalities that would not typically be reported in most patients, but they had to note them with her history. Anyway, we didn't even have any of that this time. ALL was NORMAL!


Our doc said he still firmly believes that Kylie's case of Infantile Spasms is an idiopathic one, meaning no cause. Are we still worried about something returning, well of course, what parent wouldn't be. The good side of it is that we are on the right track, Kylie is doing amazing and we couldn't love her anymore.


Hope you enjoy the pics I took of her after her nap today. We just love this doll baby so much!

Tuesday, August 11, 2009

Here we go again...

Okay, well tomorrow morning (7:30am) Kylie has another EEG to start off her day...and ours. Sad thing is that it doesn't start tomorrow, it starts tonight....you know, the whole sleep deprivation deal where we have to keep her up an extra two hours and get her up 2 hours early and keep her up until the test starts. Goodness, we still have another hour plus to go, and I am already tired.

I'm not sure why, but Matt and I are kinda not wanting to have this one done. Not that we really look forward to any of them, but this one is not something we are excited about. I guess it's because things have been so great, and this is just a reminder of where we started, and many other thoughts that I don't want to say out loud. Just don't want the good things to stop.

Friday (9:45am) we meet with Dr. LePichon, Kylie's neuro, and he will go over everything with us. We are looking forward to meeting with him, since we have not seen him since sometime in May. I'm not sure what questions we have for him, but I'm sure we will think of some before then...we always do :)

So if you all have a moment or two, think of us while you sleep because we will be pooped trying to keep a tired baby awake. If it's not too much trouble, some prayers would be good too :)

Tuesday, August 4, 2009

An amazing friend...

I have become friends with a wonderful mom of a little boy, Trevor, who has IS....the catastrophic epileptic disorder that Kylie was diagnosed with. Trevor's mom, Danielle, has been a great support for me, and she is such an advocate for her little guy...he is so precious and just has an amazing smile and eyes that are full of wonder and adventure.

Danielle has been blessed with a truly amaing friend that really gets it...she gets what Danielle, and every other parent of special needs child needs. Here is a message that Danielle's friend sent to her. I encourage you all to read it, as it really depicts what we and so many other families of special needs kids need.


Top 5 Things Your Friend Who Has a Special Needs Child Wants to Tell You

I never realized what these parents go through until I witnessed it first hand (sort of) when I was reconnected with a friend from college. Her son suffers from a devastating seizure disorder (Infantile Spasms)and it really opened my eyes to what they are going through.As I began to pray for her little boy who is only a week younger than my own child, God began to show me how to be a friend to her even though we are separated by over 1,000 miles. I am not saying that I am a great friend but I want to share with you a few things I think has helped me be a better friend to her.

So here is #1...
Do your own research but don't email your friend the 1 million websites that you find concerning her child's disorder BECAUSE unless she doesn't have the Internet she has already looked at every single one of them over the course of 5 sleepless days and nights following the diagnosis.

The reason why I say this is because you need to be informed. This is the closest you will get to understanding what your friend is going through and you need to be equipped to help her explain to others what is going on. Your friend has to explain what is wrong with her child more times a day than you have to pee and she probably is to the point that she just wishes she could put it on a brochure and hand it out to all the inconsiderate poops in the world who stare and make faces and ask dumb questions. She needs you to already "get it". She needs you to be able to sit in the room with her child while she eats her dinner or returns phone calls from the doctors and know that her child is safe with you because you know what is going on and how to help her child if they need it.



#2...
She needs you to shut up! or BE quiet! whichever you prefer. I am not really partial to either word so its your choice. There are so many different SN children but unless your child has the IDENTICAL disorder, DO NOT say "oh I know how you feel." CUZ' you don't! you don't have a clue and no matter how much time you spend with the child and your friend you still did not give birth to a child that has a special need and you don't know how they feel. I will give you an example from my own life that may seem a little extreme but I think you will get the point.When I was 6, my sister who was 8, died from complications of juvenile diabetes. About 4 months after her passing it was Fall and kids were going back to school. A friend of my mom's stopped by our house one afternoon whose daughter had just left for college and it was about 20 hours away from where we lived. She sat at our kitchen table blubbering and babbling about her little girl being so far away and then

She said it yep, you guessed it

she said, "OH [my mother's name],I now know exactly how you feel about [my sister's name]! I feel the same way!I miss my baby girl so much!"....well, my lowly, meek and mild mother lost it, probably one of three times in my life I ever saw her that upset. She responded back to her, "You don't have a clue how I feel, your daughter will come home for Christmas, you will get to see your daughter walk down the aisle one day, you will celebrate another birthday with your daughter and I will never ever get to do that with mine!"

Get my drift.... Those words can be so hurtful when you may mean them to be helpful and if you are one of those people who say to that "well, they need to not be so uptight, I am just trying to help." YOU need to go back and take TRUE FRIENDS 101 and get your head out your rear because being a friend to her requires for you not to be such a self-centered poop!I feel like this is one of those friendships you have to have in your life. You need to know what its like to always put some one's feelings before yours. You need to allow them to have complete phone conversations without you really responding. They need to turn to someone that they can just be open with and not have to worry about hurting your feelings by not giving you proper "air time". You need to understand that the blessings you receive by being so selfless outweighs any other friendship you may have.



#3...
Watch the "religious" talk. I know you are wondering why I would say that right? I mean, I am a Christian and I should want the whole world to know about God and how He has worked in my life but I think that sometimes the redundancy we as Christians use when someone is ill does more harm to our image than anything else.

If your friend is a believer then they probably already know everything that the scriptures say about handling trials in our lives. They really don't need you to quote scripture to them and give them every Joel Olsteen book. Trust me, they know the verses and they REALLY don't have time to read right now. If they want to read they will pick up the book themselves. Some people find comfort in self-help books but a lot of people when they are overwhelmed with LIFE just want some quiet time to reflect not to read a book that tells them they are handling the situation wrong. Often times all they need to know is that you are praying for them and once you have let them know that, be quiet.

If your friend is not a believer, now is definitely not the time to preach at them. The last thing they need in this world is your religious quotes. I have seen people who are not close to God be pulled even further away by an overzealous Christian who means well but their delivery draws a vacuum. Sometimes Christians can also cause the unbeliever to feel as if they are going through this trial because of their unbelief which cant be further from the truth.[See complete side note] You treat the unbeliever just like the believer, let them know you are praying for them and be quiet.

[COMPLETE SIDE NOTE]

okay... back to trials in our lives vs. God. I heard it said best from someone whose child died tragically in a drowning accident, Things happen because we live in a sin-filled world and while God is always in control Satan still has a strong hold on this world too and this world is a fallen place and we are a fallen people. Still not making sense, well to those who feel like only bad things happen to those people who are less than perfect in their Christian walk let me remind you of the verse that says all our righteousness' are as filthy rags and also, you should read the book of Job. See, sin entered the world and bad things are going to happen but in God's eyes our works mean nothing to Him because He never wanted it to be about works He wanted it to be about TRUST. He wants us to trust in Him while always remembering that one day we, as believers, will be resting in His presence and all our trials will be gone.



#4...
DO NOT, I REPEAT, DO NOT suggest "this great organic diet that you saw on an infomercial that, you know, that blond actress whose child has a disability switched her son to and he was magically cured!"

I will let you in a little secret, I do believe we should watch the amount of man-made chemicals we put into our bodies but I don't believe that eating 4 lbs of raw carrots which have not been "tainted" with pesticides is going to cure a SN child. In the actress' case, maybe it did help. Her child has a very relevant disorder which I know a little about because I have a friend whose child suffers from autism and it is a scary sad disorder so please, please don't think that I am "downing" her or her child, I promise its not that at all. I just don't think its the cure-all for every child with every disorder. I realize there are certain diets that show improvements in certain disorders and trust me, if the parent has done their research they already know about it. Be careful again how you mention things to that parent. IF you tell them their child needs to eat all organic or if you allude to the fact that the condition their child has was caused by them not eating organic you have done more damage to that friend's spirit than what can be repaired.



#5...
You need to be their biggest Cheerleader. As I have mentioned before my friend with an SN child lives 1,000 miles away so this one is a little harder for me.

[ BECAUSE D, I promise you, if I lived there, i would make myself a cheerleader outfit and put my hair in pig-tails and put a big T on the front of my shirt and everyone in your town would say "Good Lord, please give that woman her meds and send her home!" ]

I am not tooting my own horn at all but I know that you are vocal about things that you are passionate about. Everyone at my work knows that my one wish is to be able to fly to where D lives this year and see her, my family and friends all know about my friend's child and they often ask me about how they are doing. Even on National Epilepsy Awareness Day I had 3 co-workers in purple that day! They need to see your support. Think about it, when the football team is down by 2 and they just feel like they cant move that ball another inch what gives them the motivation to get out there and move that ball into field goal range...

THE CROWD!! THE YELLING AND THE SCREAMING AND THE "YOU CAN DO IT!" ( like in the movie "waterboy" HA!)

It's the cheering that makes that football player get back out there and give it just a little more effort and I think the same applies for our friends with SN children. When they see the support and they hear the cheering and they hear the "YOU CAN DO IT" it gives them the energy to get up and push a little harder the next day.

Sunday, August 2, 2009

Weekend of pics

Okay, so amidst of all our running around this weekend, I took some time to capture some pics of our baby girl. Here are a couple of her in the swing outside. The last one is my fave..those sweet innocent eyes...they just make your heart melt!






I just love this pic..those cheeks are so adorable...they just say baby...my sweet baby girl :)




Here are some of her looking out the front window. She loves to look outside and be outside too.



 

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