Monday, December 24, 2012

All I Want for Christmas

Tyler and I have been together for eleven years, married for eight. Its been about five years since we each got one another gifts for Christmas. We stopped because it got rather difficult to buy for each other when we would just buy what we wanted/needed throughout the year. Christmas would come around and he would say he was going to buy a new golf club I'd say "Wait! Let me buy it for you for Christmas!" and he'd say he needed it right now. So, we started doing things like buying something for the house or going on a trip. Pre-kids we would also always make a Christmas dinner and celebrate just the two of us before all the family fun began. We would always get Pasta & Co. and have a big dinner with one (or two) of their little cakes for dessert. It was our tradition.

This Christmas will be different and we're pretty excited. Although Sam doesn't know the true meaning of Christmas, this will be the first Christmas he is tuned in on what Santa is all about. He understands that Santa will bring him presents if he is good. I of course have tried using this to bribe him screaming, "SAM! No running in the store! Santa is watching!" This however rarely worked. Candy canes have been a much better bribe. He was great when we went to see Santa too and asked him for "Bad guys and The Ogre please." Adorable. Both he and Sydnee were also happy to sit on the "big guys" lap for that very important picture.

We had so much fun getting a few things for Sam and Sydnee this season that Tyler said he wanted us to do gifts for each other too. He asked me what I wanted.

I am not a jewelry, purse/bag, or even really a clothing girl. I think that could make me either hard or easy to shop for (easy due to my lack of all of the above). I however truly feel I have all I need right now and responded that all I want for Christmas, not to mention my birthday/any future special occasion is a donation made to Children's Hospital.

I will never forget when Sydnee was diagnosed and we (Grammy and I) started the discussion of medications with the neurology team. They told me there are three different options to treat IS. Prednisone, Vigabatrin, and ACTH. They told me their first recommendation would be for the ACTH. They however told me that since this is very specialized medicine, making this option very expensive. They mentioned only one pharmacy in the country (ONE PHARMACY IN THE COUNTRY) compounds this medicine and its on the east coast. They said it is hand delivered to us and it would need to be signed for. This is also the only option that would require injection by needle. The other options were oral. But all I really heard was, this is our recommendation and what we feel is the best option. THE BEST OPTION.

Then I remember asking the loaded question, "how expensive?" Their response was, "a small vial can cost around $30,000." I looked at Grammy and almost threw up. She asked if it was delivered in a Lamborghini.

The neuro team then told me something amazing. They told me at Children's Hospital they never want money to be a factor in deciding the best option for your child's needs. They said there is a donation fund called "Uncompensated Care" where money is donated for the specific reason of supporting families pay for expensive medications. There was my hope. I said I would check with my insurance and if they did not cover this medication, I would check to see if we would qualify for the uncompensated care option.

Hands shaking I called my insurance company, Group Health. I'll never forget what they told me. "For a small vial of ACTH it is $40,000. With your daughter's dosage it will last you one week. However, it is covered by your insurance so all you need to pay is the $30.00 copay." Tears. Tears. Tears.

I will never forget that feeling of possibly not being able to give Sydnee the best option to beat IS. I also think about the children that are hospitalized and their parents all the time. They are always in my thoughts and prayers. Which is why, for my Christmas and birthday I will make it a tradition to donate to Children's Hospital and/or another charitable organization.

For all of your continued thoughts, prayers, and support we have made a special donation in Sydnee's name for all her family and friends. We can never thank you enough for your love and support. Merry Christmas!

The small bottle on the left is the ACTH. We needed three vials which would cost $120,000 without insurance. With insurance, it cost us $90.00.
All of Sydnee's meds. All covered by insurance.

Merry Christmas 2012

Friday, December 7, 2012

Happy 4 months Sydnee

It's hard to believe baby sister is 4 months. With all we have been through I feel like she is 6 years old. She is doing really great. With one private occupational therapy session and one group session (birth to 3 class) a week, she is making great strides with her development. She is rolling to her sides and has great neck strength. She currently is sporting little wrist bands that keep her from tucking her thumbs in her hands so she is able to grab and reach for toys, which are helping, and which she is doing. All good things to report.

I try with all I have to remain positive, and in this moment. To not be fearful of what could happen. To be aware of it, but to live fearlessly, and remain so thankful and so very blessed to be where we are today.

Other family happenings...Sam is doing amazing with potty training. At school that is. He seems to revert to peeing in his pants the minute he walks in the house. He LOVES his big boy underwear though. All which have super heroes on them of course. I have learned my lesson about which underwear I buy him too. It must be the kind that have characters on the front and back. The ones with just characters on the butt he wants to wear backwards so he can see the character in the mirror. Its hilarious. I've learned that it is not worth the argument after many meltdowns for me to try and explain they are on the wrong way. I figure he'll just realize having a wedgie is not comfortable in due time.

Here are some pics we've taken monthly of Sydnee. Some of you may remember the one's I took of Sam. The first months pic I took of Sydnee I mirrored the ones I did of Sam during his first year to compare them. I envisioned doing this set for her whole first year pics too. Then when she got sick and was diagnosed I kind of stressed on the direction to go with the months ahead. Would she be able to play sports? I didn't want to take the pictures and have her look back at them like they were something I dreamed for her (to play sports) and have the fear that she wouldn't be able to walk/run/play (crazy talk). It sounds silly to type that out, but that's how I really felt.

So, I decided to take her monthly photo's like a living journal, what was important to her that month. I'm going to let her guide me. I can't wait to look back at these with her and explain to her why we took the pictures we did.

Sydnee 1 month old
Sam 1 month old

Sydnee 2 1/2 months. This doll (given by my aunt and uncle) helped us through some rough moments in the hospital. Sydnee LOVES this doll. 
Look, I can hold my head up! Getting strong!
Loves this toy. Can grab and put to her mouth. Also showing her wrist bands AND...that sweet, sweet smile.

Backwards, but SO proud!
Sibling love

Wednesday, November 21, 2012


We have so much to be thankful this Thanksgiving. Family, friends, our home, and mostly our health, to name the big ones.

It amazes me to be able to say I am thankful for all that I have been through. I am thankful for the struggle of being able to find myself after being in a dark place. For trusting fate, and having faith.

During the time of when Sydnee was having episodes and we didn't know if the medicine would work I didn't think I was ever going to be able to return to myself. I actually questioned if I would ever be happy again (insert Grammy yelling "Crazy talk!"). The feelings I felt during that time are hard to put into words. To try and put it simply, my head and my heart felt extremely weighted...heavy.

These experiences with Sydnee have made me feel things that I don't know if I would ever have felt in my life had she not been born. The experience of such raw and strong emotions. It has been eye opening on so many levels. I feel it has made me a better person, friend, and mom.

We received the results of Sydnee's latest EEG. It was marked "improved." This is such a relief and so amazing to hear. Her EEG showed no signs of seizure like activity and no hypsarrhythmia (a pattern associated with IS). This is what we always want to see. She will continue to have EEG's about every two months for the time being. She continues to be on two seizure medications that she takes twice a day. We are told she will mostly likely need to stay on at least one seizure medication indefinitely.

The doctors continue to tell us we are not out of the woods with Sydnee's health. In this moment, right now, I am thankful to be walking through the woods, and not at a standstill. We continue to move forward.

Here are some other moments I am thankful for that happened over the past couple weeks...Happy Thanksgiving!
First fort!
"Can I hold baby sister?!"

Check out the "flair" Sam added to baby sisters play mat :)
Death grip on spidey and the balloon
So crazy cute


Monday, November 12, 2012

Baby Sisters Play List

We are a family that loves music. It's part of our daily lives. Our family dance parties are some of my favorite moments. We all sing, we all dance, and Sam usually does what he refers to as "shaking his butt-butt."

Below is the play list that will always remind me of Sydnee as a baby. Sam had his own list too (lots of Death Cab for Cutie, Pearl Jam, and John Mayer's "Free Falling").   Songs that I just play over and over. The songs on Sydnee's list are a lot more upbeat than those on Sam's list. I used Sydnee's songs to keep us going, Sam's were used to calm us down.

Click on the links below and dance with us...

Song 1

Song 2

Song 3

Song 4

If there are songs/bands you think we should look into message me or leave a comment.

Friday, November 9, 2012

Children's - Construction Love

Children's hospital isn't a place where you ever want to be, but if you HAVE to be there, you feel beyond lucky to have access to it.

Seattle Children's covers five states, Washington, Oregon, Idaho, Montana, and Alaska. Our Neurologist had to leave our room for a few minutes the first night we were in the ER to take a couple calls. She explained that she was talking with a Dr. in Montana about a child and they did not have a neurologist in the area. At that moment, I was pretty thankful to live 25 minutes from this amazing hospital.

They are building a new wing at Children's right now. They are calling the new wing "Building Hope." It will support Cancer, Critical and Emergency Care. It is impressive. I have no doubts that it will be a great comfort to children and their families.

Grammy and I made it a point to leave our hospital room at least once a day. In the halls of the hospital they have a lot of information about the new wing. Below is a story I read. It made me smile.

For many young patients at Seattle Children's Hospital, getting through each day is a challenge. But, now there's something truly special right out their windows.
Members of Ironworkers Local 86 who work on the construction site are sharing good wishes with kids by painting their names and get well messages on beams that are part of the new building’s structure. For young patients such as four-year-old Julian Blackwell, and 16-year-old Zac Greyling of Des Moines who is battling leukemia, it sends a message of hope.

It all started with Brayden, the teenage son of a friend of a member of the construction crew. When Brayden lost his battle with cancer, they painted his name on that beam.

Children staying in the hospital saw his name painted on the beam, and they began posting their own names in the windows.

Crews said the names should be visible until December when they'll be covered up by the next phase of the building. Until then, the kids whose names are on those beams are the first to tell you, they'll always be a part of that building.

Here is a picture of me with Sydnee's neuro team. All together she had over ten specialists just from the neurology department. I am beyond thankful to all of them.


Wednesday, October 31, 2012

The Odds & The Internet

1 in 100,000. Those are the odds of a baby being born with IS (Infantile Spasms). I think about that number all the time. One in ONE...HUNDRED...THOUSAND. To put that into perspective, Seahawk stadium holds 67,000. The city of Pullman, WA (Go Cougs!) has population approx. 30,000. Swedish Hospital in Seattle delivers approx. 8,000 babies every year. --- And our sweet baby sister has it (IS). It baffles me.

If you've looked up IS online, you've no doubt come across some scary stuff. In a nut shell IS is an uncommon form of epilepsy. In Sydnee's case, it is a side effect of her having FCD (focal cortical dysplasia). The neuro team at Children's Hospital told me that on a scale of good to bad, her cause of IS is on the good side of that scale.

I try really hard to stay off the Internet. It has helped me, but also has also lead me to dark thoughts and I'm trying to steer clear of those. What I have decided is no case is the same because none of us are the same. There is only one Sydnee. I have decided to let her guide me going forward and no one else.

AND...she has the following bonuses...

1. She is MY daughter. For those of you that know me, I am not one to back down. In fact, in most cases, I'm the first to stand up. She has already proven to be one tough girl.
2. She has already responded to the medicine. I read some sad cases where some children did not. My thoughts and prayers are with them and their families.
3. As a family we will do everything to help her have the best life she can. Her dad is in the other room doing physical therapy with her as I type. He does this at least twice a day with her.
4. She has love coming to her from around the world.
5. Her brother thinks he is Batman and he will protect her against all odds.

We're ready for whatever comes our way! Happy Halloween!

Sweet Baby Sister

Monday, October 22, 2012

Weekend Funny - Crayons

Our son Sam cracks us up daily. I picked him up some new crayons this weekend and he was excited to get to "work" when we got home.

He takes the crayons out one by one and gives his paper a little scribble. I think "YES!", there are twenty-four crayons. This should keep him busy for awhile and I start cleaning the kitchen. About five minutes go by and he screams "UGH! MOM! This one is broken! It needs batteries! FIX IT!" I look over and he is holding up the white crayon.

He thinks batteries fix everything. The mind of a two year old. I love it.

Usually sporting some type of super hero shirt/costume. He is obsessed.
Why is there even a white crayon in the box?

Saturday, October 20, 2012

Baby Sister's far

This first post is dedicated to my daughter Sydnee, also know as "Baby Sister" around our house. She is the inspiration for starting this blog.

This is a long post. I tried to cut it many times, and did. With so much to tell however, this is the shortest I came to. Stay tuned for shorter posts in the future.

Sydnee was born on July 27th, 2012. My husband Tyler, a commercial fisherman, was in Dutch Harbor, AK at the time I went into labor. With Sydnee being our second, I wasn't feeling nervous. Actually, her being twelve days early had me in more of a shocked state than a nervous one.

Her delivery was a breeze. In fact, I was talking business with my mother-in-law aka Grammy (whom I work for) minutes before they told me it was "go time". Although Tyler wasn't there for the big show, Sydnee was greeted by her Aunt Melissa (my sister), Grammy, and CC (Grandpa Kev's lady). Tyler was on speaker phone the whole time getting the play-by-play from Grammy who would scream to him ALL that was going on. Our sweet Sydnee arrived in about 15 minutes after "go time" was established. No complications. Lots of tears of joy.

Sydnee Bean Kirkpatrick

Tyler made it to us the very next morning. We were beyond overjoyed. Our daughter was here. We could not wait to take her home and introduce her to Sam, our 2 year old son.We relished in the craziness of being a new family of four.

After three weeks Tyler headed back to Dutch Harbor to finish the fishing season. We expected him home in about 6 weeks. Everything was going great. Busy, but great.

It was week 5 of Sydnee's life, just over a week since Tyler had left, that we hit a bump in our happy road.

Grammy and Grandpa had graciously taken Sydnee for a night so I could get some much needed one on one time with a very jealous Sam. The next day Grammy mention she noticed Sydnee doing something odd.  Before she even described it, I knew exactly what she was talking about. I had noticed Sydnee doing something odd the other day as well. Grammy noticing it too raised a red flag and had me call the doctor right away.

We noticed Sydnee slightly raising both of her arms and her head and eyes averting to the left. I had only seen her do this about once or twice, but now that Grammy had brought it to my attention I studied her all afternoon. She would repeat this behavior about 10 - 20 times, in a cluster. A cluster would appear 1 - 2 times during almost every hour that she was awake. Each movement lasting about 3 - 5 seconds.The movement was more aggressive if she was laying on her back.

I got on the phone with a nurse to book an appointment with our pediatrician. The nurse told me it was probably nothing, but to try to get her on video and call back. I hung up and called back within five minutes telling them I had a video.

Next, I did what most probably would have done, I went online. Sure enough a hit came up on You Tube.  I found videos showing other children doing exactly what Sydnee was. Most were labeled Infantile Spasms. I was sure that this is what she had. I was terrified.

I called Grammy who told me to get off the Internet immediately. She also demanded that she come with me to the appointment. Her being at the appointment was not just amazing support, but a much needed second set of ears.

 --- Note; my parents live in Arizona. To be so close to my mother-in-law is a gift I can't begin to describe. Maybe in a post to come. ---

At the doctor appointment we describe the behavior Sydnee is expressing and show the video. The doctor recommends an MRI at Children's Hospital in Seattle next week. I look at her like she's crazy. Wait one week!?! I needed answers. I needed a plan to help my child. Just as the appointment is wrapping up Sydnee has an episode. I become extremely upset. She doesn't appear to be in any pain, but watching her, you just know this behavior is not normal.

Seeing how upset and worried I am the doctor asks if I would like to be referred to Children's Hospital ED (Emergency Department). The other option at hand is to wait for the MRI next week. I looked at Grammy who was also in tears.

For the next eight hours Grammy, Sydnee, and I were confined to an ED room at Children's.  I tell the story of when we noticed her spasms about 20 times to about 8 different doctors and nurses. Grammy does her best to stay positive saying things like, "We have just sped up this process! We are HERE. We are not having to wait a week!  We will find answers. This is the BEST place in the country for her to be!" In the meantime, they are poking and prodding my poor 5 week old daughter and I am useless. I'm a zombie full of tears, worry, and exhaustion. Grammy tells me I need to eat and starts force feeding me apples and peanut butter. We are admitted to the hospital that evening.

We end up staying six nights at Children's. The first three days/nights were the worst. All the testing. MRI, EEG, Spinal Tap, countless blood tests. It was a dark time. Tests were taken and then we were left waiting hours and days for answers.

Day three in the hospital, we are finally given answers. Sydnee is diagnosed with Focal Cortical Dysplasia (FCD). She was born with a small nickle sized dark spot in the lower left portion of her brain. What this means is that the neurons in this small area did not grow straight, and instead, formed crumpled.  FCD is what is causing her to have spasms and seizures. She is diagnosed with Infantile Spasms (IS), which again, is what I found online.
We discuss treatment options. We decide to go with a medicine called ACTH for her spasms. This will require me to give her a shot in her leg every day for at least three weeks. She is also placed on two seizure medicines and two others to help with the side effects of all of the above. All together, six different medications.

We stayed in the hospital for another three nights to make sure she has no bad reactions to the medicines. She continues to have episodes of spasms. Grammy and I log them as they happen.

After six extremely long nights we are discharged from Children's. We are so happy to be heading home. We are told the ACTH will take time to show results. I am told that there is a chance that the medicine may not work. That after two weeks if the spasms are still present we will up the dosage and go again more aggressively. I am told many people have FCD and never know it. That her brain is working hard to make a detour around the damaged area. It's a lot to process.

Grammy stays at my house for three nights to make sure I have the medicine routine down. Tyler and I make the decision for him to finish out the fishing season in Alaska with 3-4 weeks left. Shoot, someone has to pay the bills we know are going to come.

Two weeks go by and Sydnee is still having spasms. It is beyond heartbreaking. I call Neurology at Children's. They up her dosage of the ACTH. Almost doubling it. In my mind I feel like we are finally saying F-U to these spasms.

I call Grammy crying. I tell her I just want that day to come. That day when I don't see any more episodes. Grammy gives me the best advice. Amongst my sobs and what she refers to as "crazy talk", she tells (more like yells) at me to go and watch something funny. She says I need to laugh. I pull up my DVR and see the new season of SNL has started. I watch. I laugh. I laugh out loud. I am in shock that I still know how and can laugh. It feels so good. I stop crying and watch more funny stuff.

I went to bed that night and changed my prayers. I stopped begging God to fix her. Instead, I started thanking him for her. Just as she is. For Sam. For Tyler. For Grammy. For my family and  friends. For the doctors that are helping us. It was the moment that I stopped crying and decided to be strong. The moment I accepted Sydnee for who she is. The moment I fully embraced it all.

Three days later Sydnee's spasms stopped. Exactly one day before Tyler comes home. He has never seen her have an episode and we hope it stays that way.

The first week Tyler is home we have to go back to Children's for another week. Sydnee developed high blood pressure from the ACTH. A known side effect.This time in the hospital was very different. No Grammy (who I missed terribly as we had a little routine that I enjoyed). No logging spasms as she wasn't having any more episodes. Tyler was a great support. We watched lots of episodes of "Workaholics". We laughed together amongst all difficulty that was going on. After five nights her BP becomes stable. Still very high for a now eight week old, but stable enough to go home. Two more medicines were added to her already long list and we now have our very own blood pressure machine.

Fast forward to today...

We have yet to see any more episodes of spasms. The doctors prepare me however that they may return. I am thankful that we at least know the ACTH works for her. I am hopeful, and as a family, we are moving forward.

Sydnee is smiling, cooing, and happy. She is a little bit behind in development (just now starting to lift her head when on her belly), which we expected since the spams took a toll on her body. Tyler and I are taking her to occupational therapy classes once a week and working with her at home to help strengthen her muscles. We are at the doctors a lot, 1-2 times a week and then therapy. She sees a team of Neurologist, Nephrologists, and Epilepsy specialists.

Tyler and I are committed to giving Sydnee and Sam the best lives they can have. To laughing and smiling together, to being thankful for all we have.

As Sam is running around the house naked and screaming the other day, I tell Tyler I just want Baby Sister to be able to have fun with him too. --- Grammy would refer to my comment as "crazy talk" --- Tyler says, "Of course they will have fun together. It just may be that their idea of fun is different. Ya know, kinda like how I like to watch sports for fun and you like to watch those crazy Housewives." I laughed. It was a good answer.

Me & Sydnee hospital stay 1.

Grammy, me & Sydnee
She is perfect.
My favorites

Thanks to all our family and friends for all your support and love. We feel your thoughts and prayers everyday. Keep them coming. We are sending them to you in return.
A few shout outs;
To Lindsey Barnes, my sisters, Uncle Ryan, my sister-in-laws, Grandpa Kev and CC...who all stepped up to take care of Sam so I could focus on Sydnee. I love you all.
To Grandpa David, for bringing  me and Grammy food everyday we were in the hospital. Your visits were the best part of our day.
To my parents for all their love and support from afar. It kept me strong. Grammy. Who I could not have made it to the positive state I am in today without. Who I will never be able to thank enough.