Monday, February 28, 2011

December 2008

Christmas 2008 - almost 2 and a half years ago.

I look back on these pictures and vividly remember the horror that we went through almost 2 and a half years ago; my baby repeatedly turning blue in my arms, the long ER visit where the seizures wouldn't stop, the ambulance ride, the spinal tap, my drugged up unstable baby, the EEG's, the never ending screaming those first couple nights in the hospital, the metal cage, the diagnosis, the medicine's, the side effects, the long nights at home, the irritability, the inability to express her pain,...it was a mothers nightmare. It has been a roller coaster ride these last two and a half years, one that only seemed to stop for a few weeks at a time, but, (and I use much caution in saying this), I think that this chapter in Sydney's life has finally come to close. The difference is unbelievable! She is sleeping, she is talking, and she is interacting more than ever. I believe that she will remain "epileptic" throughout her life and must use caution around triggers such as bright lights and high fevers. For now though, she is seizure free, medicine free and she is a new kid. A happier kid. She is SYDNEY, (but with a lot more spunk, smiles, and words, and a lot LESS screaming!)
We love you big girl!

Sunday, February 27, 2011

7!

"I wanna go up the ladder daddy"

7 words. Count them. 7! This is Sydney's longest sentence to date. I am seeing so much change in her now that she is off her meds. Her language is taking off!

Thursday, February 24, 2011

Zoo!

Atlanta ZOO! This is the first time that Daddy has gone to the zoo with the family, so I had to capture every moment :) (I go often with my girlfriend, but the pass we bought is only for 1 adult and 4 kids. Sorry Cam.)

After a long winter, the sun and warmth came out last weekend and we were able to go to the zoo, with the rest of Atlanta. It was CROWDED to say the least! Note to self: do not go to the zoo the first nice day of the season.
We had a good time none the less and here is the proof:
Macers is still such an easy baby. We can tow her anywhere!
Daddy and the girls. I LOVE it!
The kangaroos are a favorite. Lsst time we went the baby was in the mothers pouch...how cool is that!?
Trains...trains...trains...
The Atlanta Zoo train ride might possibly be the worst zoo train in the US. It is horrible! Don't waste your money (even though we do EVERY time). You go through a couple of tunnels, see 3 animals and then you are done, (but Dylan loves trains, and so we do it EVERY time we go...the things we do for our kids...)

Language

You cutie?
You happy?
Mommy get up.
Mommy stand up.
I want more.
I want milk please.
Apple Cream no cry!
No bark Marley!
Dylan's on the bus?

These are all new Sydney sayings in the last month. No naps equals better night sleep, which equals better language development! I think that she can finally put all of her thoughts into words. Its remarkable! Wahoo! Now, if only we could get her to ride a tricycle. I think she is well on her way to being exactly where she needs to be developmentally. I am such a proud momma!

Friday, February 18, 2011

Life

I have spent the last five or so months talking about Sydney and this entire weaning process. I go up and down between emotions because some days are great and others, are just awful. I feel like a crazy person. Really. So, I am here to tell you, it has not gotten a whole lot better. I thought the meds were completely out of Sydney's system, but I am finding out the hard way that this is not so. It could take months, years, for these meds to get out of her system and it could take just as long to get her habits back to where they need to be. She was 8 months old when all of this started and she learned some not so great habits during those two years. It's a tough mountain to climb but we will get there!

Anyway, I am not going to complain. Not going to mope. I am just going to say for any of you out there that have been through this, I am so sorry. For any of you going through this, I am so sorry. For any of you who have felt entirely alone and incapable during this trial in your life, I am here and I understand. You are not alone.

I woke up this morning to find out that an old friend took his life last night. I put aside all of the hopeless feelings that I have been feeling and thought about him for a while. I thought about his worth, and how he had touched so many people throughout his life. What a tragedy it is that he lost all hope. In everyone. In himself. How terrible that he couldn't see a reason worth living. I have had these thoughts many times throughout these last few months. Not suicidal thoughts, but just thoughts of frustration, hopelessness, and feelings of loneliness. Complete emptiness can be so overwhelming sometimes. I immediately remembered this song that I used in a Sunday School lesson years ago called, You are Loved. It is written and sung by Josh Groban. I forgot about this song until just today. But, when I played it, I was filled with tears and hope once again. There is someone out there who understands our trials and is with us every step of the way. I like to think of the love that my Savior has for me when I listen to this song, but for many of you non-believers, this can be anyone. You are loved, by many, and you are not alone.


"You Are Loved (Don't Give Up)"

Don't give up
It's just the weight of the world
When your heart's heavy
I...I will lift it for you

Don't give up
Because you want to be heard
If silence keeps you
I...I will break it for you

Everybody wants to be understood
Well I can hear you
Everybody wants to be loved
Don't give up
Because you are loved

Don't give up
It's just the hurt that you hide
When you're lost inside
I...I will be there to find you

Don't give up
Because you want to burn bright
If darkness blinds you
I...I will shine to guide you

Everybody wants to be understood
Well I can hear you
Everybody wants to be loved
Don't give up
Because you are loved

You are loved
Don't give up
It's just the weight of the world
Don't give up
Every one needs to be heard
You are loved

"Akkkkkkkk" -Cathy


I done gone and got my hair did. Next time I will wait until my early life crisis is over before deciding to do something drastic. Why is it that when we are going through a rough time the first thing we think to do is cut or change our hair? I don't get it but I have had a long history with this, and I am sure this will not be the last time this happens.

Dylan turns 5!

Dylan turned 5 this year and what better way to celebrate than with a Star Wars party!?

Logan came as the older cousin (who has star wars sleepovers with Dylan) dressed as Darth Vader to fight the kids and to welcome them to the party. What a guy! He was so great!

The first line of business at this party was Jedi training. Cameron would show a clip from the movie before each training session. This is how it went:

First off was the sarlack pit. (I will fill this in when Cameron tells me what the pit was called)
The kids had to reach down and grab their own light saber from the (stocking covered) tentacles in the pit. Scary stuff!

Next off was the droid game. The kids had to use their lights sabers to keep the balloons off the
ground
Next came the obstacle course. We had to have the smoke machine set up of course (so daddy had to play a few of his rock band songs to get the fog machine up and running). The kids had to walk into the foggy course and make their way through. Notice their light sabers even lit up. Awesome!
The kids had to crawl through the sewege, up over the lava, into the balls of fire, down the slide, through the quick treadmill into the bed of bugs only to flip off the rocks in the end. It was intense. Dylan had to do all of this with Yoda on his back (just like in the movie). Daddy was so proud.
Next came Yoda's time to talk about the force. He had a little puppet show under Dylan's loft bed. "The force you will use to destroy Vader"
Next came time to use the force...the kids were asked with the impossible task of opening the garage, without touching the button. They all looked back to make sure we weren't touching the button...(I had a remote in my hand). When the door went up little Kennedy turned to her mom and said, "Ohhh mommy I have powers!"

When the door went up, there was Darth Vader waiting to be defeated by these newly trained Jedi's. It was awesome.

We were going to end with a pinata of the Death star so that the Kids could say they defeated the death star, but we were tired and didn't find time to make it this year.

We ended with the moon bounce and some cake. This year I made an R2DD2 cake. Rockin!




I hope Dylan remembers how cool this party was because I am pretty sure we will never be able to top it. It was a great day!

Macey Moo

Macey is now 10 months old! It is crazy how fast she is growing up. CRAZY! Here are just a few of her new tricks:

1. Peekaboo! We were at the park one afternoon having a picnic when all of a sudden Macey started covering her face and playing peek a boo with us. At nine months old! None of my kids ever did this, especially at such an early age. I was glad that we were all there to see her do it. It is now the kids favorite game to play with thier little sister.
video
2. Eating solids! Sydney didn't eat solids for months because of the meds that she was on. It is so crazy to me that Macey is already having puffs and little ritz crackers. She is such a BIG girl!
3. Pulling up and beginning to walk! Macey has been pulling herself up for months now, but she is starting to take steps with a walker or something steady. Since this stage has begun her sleeping habits have been a bit off. She is just too excited to be moving!
4. Playing with her brother and sister! One of my favorite things as a mother is to watch my kids all play with one another. It brings so much joy to my heart to see them all get a long and care for each other. For the most part the kids enjoy playing with Macey, but lately there is a little bit of sibling rivalry (usually with her big sister).
5. Bath time is fun time!

Friday, February 11, 2011

Strep

No kidding. I woke up with strep throat this morning (the morning before Dylan's birthday party). Second time in two months. Oh and I think my baby has officially weaned herself because my anxiety has changed my milk production and Macey is no longer a fan. Can you say stressed?

Wednesday, February 9, 2011

When it rains...

I wonder sometimes if I want to remember to hard times. Do I want to journal them so that I can look back and remember the misery? I have decided the answer to this question is yes. I think that it is important to remember what you went through in order to get where you are. Right? With this said, I am just going to write. This isn't so much a post for people to read as it is for my own journaling purposes, so if you don't want to hear about sadness...then by all means don't read.

My last post was about how Sydney was sleeping once again. That lasted all but two days and then the hell began again. This seems to be the pattern although this time...the pattern changed, just a bit. I went crazy. The no sleep mixed with Syds screaming, mixed with the anxiety over my child, mixed with my husband not being home to help ended in a complete mental breakdown. I don't need to get into the details but I really went crazy to the point of well...it doesn't matter. Cameron was able to stay home to do the kids while I tried to get back on my feet. I have never had an episode like this where I just sort of lost it and was unable to function. My physical body along with my emotional sate of mind was completely compromised, and it left me with nothing to give. It was horrible. I understand now those women that have psychotic breaks and end up in jail for doing something horrible to their child. Nobody ever knows what another is going through, and how scary is that? There is nobody to help because you can't even help yourself. I am lucky that I had a husband who was here at night and could see how bad things were getting.

Cameron himself has not been doing well at all. He started a new job 6 months ago (so that he could see Dylan more sicne he was starting school) that has been nothing but awful since the day he started. He knew all of this going in, but he was determined to help turn it around and change the work environment. 6 months later, not much has changed except his spirit. He is drained, tired, overworked, under appreciated, and stressed out of his mind. Not only does he have to deal with this horrible job, he too has had to live with Syd's screaming and sleeping issues, be reminded by his son that he never sees him anymore, deal with his crazy insane wife, and take on more clients after his already 10 hour work day has finished. His life sucks right now. He never admitted to that until this week. It has just become too much to bear. To make matters worse, the stress that he feels is all over his face in a form of a peeling rash. He can't hide his stress at all, and he can't stop itching his face! Cameron doesn't complain much about his life, but at this point, he is almost throwing in the towel. Now that I am feeling better he admitted to me just today that "there is need to worry about him". He has never admitted this out loud before. He is drowning. Last night we both admitted that this has been the hardest month in either of our lives. Physically, and emotionally. We have been through a lot together and in our lives growing up, but this tops them all. Its unmanageable. It is impossible.

Last night as we were talking about everything, I thought it important to mention the positives that have come out of this month.

The first: Sydney has slept 3 days straight. Not only has she slept, but its been longer that a 5 hour spurt. In fact, it has been 8pm-8 am. Can you believe it!? This is her best sleeping spurt yet! She also has been falling asleep better at night...the screaming has gone down significantly! Along with this I feel that she is really progressing with her development. She is a hundred percent on her chewing...she can eat anything! She is talking more, her memory is getting better, and she is having less and less screaming episodes throughout the day. She isn't as on edge and moody (its amazing what sleep can do!). She really has been doing wonderfully (but I am fully aware that this could change...most likely tonight). For now though, it seems to me that her body is finally getting into a rhythm and that the meds are FINALLY leaving her body. I think I have found my SYDNEY! Now I know what to shoot for when she is having a hard time (I know that sounds lame, but for the longest time I just didn't know if it was her or the meds talking, now I know its her). This is all great news, but even if it wasn't going this well, Cameron and I both agree that we would give up a lot more of our sanity, and our lives, if it meant Sydney was seizure free. This month has been long, but it is a miracle that she really is seizure free. And really, the wheening process could have been a lot worse! (It could have been a lot better too, but it can ALWAYS be worse.)

The second: We both realized that this trial in our lives has made our relationship stronger rather than weaker. Often times when there is a lot of stress going on we pull from each other and deal with it in our own different ways. Often times we find blame in one another. But, with this, there hasn't been blame. There hasn't been anger at one another, just empathy, sympathy, sadness and love. We both are trying to find ways to help the other cope, and it is really sort of sweet. Worrying about Cameron has also helped me stop worrying about Sydney and myself. Its strange isn't it? We really are still in love with one another (after 11 years), and that is always wonderful to remember.

The third: Our kids are amazing! Even though neither of them can sleep all at the same time, they are all such great kids.

The fourth: I am losing weight. Only 4 lbs, but hey, when is that ever bad?

Anyway, I know complaining isn't real productive, but I just want to call it as I see it. As teenagers, we wait our whole lives thinking that adulthood is going to be nothing less than exciting. You can do whatever you want, make your own decisions, make good money, etc. I remember three years ago when we moved to Ga we just couldn't wait to be making "real" money. Soon after this Sydney began having seizures and it was, "we can't wait for two years to go by so that we can see if she outgrows her seizures. " Now that we are here it's, "we can't wait 6 months from now when we will be sleeping like normal people for the first time in 3 years." There is always something to look ahead to for hope, for sanity. I just hope that soon we won't need to look ahead. That we can find happiness right where we are. I think that that day will come soon...when Cameron finds a new job and Sydney's body decides that it needs sleep. Until then, keep us in your prayers!