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

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

Thankful

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

 

 

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
http://youtu.be/NcbRMzH27GM

Song 2
http://youtu.be/p1iDBtcEm0w

Song 3
http://youtu.be/rGKfrgqWcv0

Song 4
http://youtu.be/UtnxsIBVm5s


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

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.

Matt Lorch Q13 FOX News reporter

8:01 p.m. PDT, September 29, 2011

SEATTLE—

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.

 

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

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.

Sam
Usually sporting some type of super hero shirt/costume. He is obsessed.

 

Why is there even a white crayon in the box?