Latest EEG

Sydnee had her visit with the Neuro team at Children's a couple weeks ago. During the visit I had her on my lap and the Dr.'s commented on her doing some movements (arching her back repeatedly) that made them want to schedule her an EEG to make sure they weren't suppressed spasms. I know, and they told me, that  they were siding on the side of caution in scheduling the EEG. We all felt we weren't seeing spasms, (no eye deviation was happening with these movements), but the Dr.'s felt it would be best to check out.

I did mentioned I'd seen her doing these arching moments to our PCP (primary care physician) about a month ago. I told them that she only did them when she was in her highchair, car seat  or on my lap...when she wanted out or was getting restless. That if it were Sam or any other child showing these movements I wouldn't think anything of it, but with Sydnee...I will always second guess.

She had her EEG about a week ago. I am still waiting for the results, but no news is usually good news. I know they would have called me right away if they would have seen hypsarrhythmia or more seizures. I am waiting on our next move, which is to wean her off one of her anti-seizure medications (Zonisamide). Leaving her to be on only one anti-seizure medication (Keppra). Down from 6 meds to 1.

Sydnee continues to develop as she should be. She started crawling this week and is starting to try and pull herself up. We are working towards more goals (walking furniture) in her group therapy class. She continues to amaze us.

Its been a great spring. Although Tyler has had to commute back and forth to Anacortes while the boat is dry docked, he has been home. We have about three weeks until he leaves again for Alaska. We plan to make them count. Next week we celebrate Sam's 3rd birthday. Three. Can't get over that he's turning three.

Pics from the past few months ...

Lots of helpers at bath time (Sam, cousin Carter, and Mia).

While mom's away...

Catching up

I have lots of catching up to do so here is all our family happenings recap style;

TYLER left for Alaska January 17th. Fishing has been going good and we hope to have him home by April 1st, possibly even earlier. They are steaming the boat home to Anacortes this spring to do "ship yard" (maintenance). They do this every two years. Its hard on us because he will usually work four-ten hour days a week and the drive from Seattle to Anacortes is an hour and a half. Which means he leaves really early and comes home pretty late.

Once ship yard is over its back to Alaska so he won't really get time off like he usually does. I am however, really excited to pick him up at the dock instead of the airport. Sam will get a kick out of seeing "daddy's boat". The last time the boat was home I was eight months pregnant with Sam. Seems like forever ago.

SAM is busy being almost three. The things that come out of his mouth on a daily basis are a crack up. He is also pretty much potty trained (yay!). If we are playing and he has to go he just stands up really fast and runs out of the room. The first time he did this I was like...what the heck, "where are you going?!" and yelled back  (still running)"I gotta go potty!" He also screams "PAUSE IT! PAUSE IT!" if he's watching a show and has to go. He has even told me he needs to go potty when we were at the grocery store and he held it until we found the bathroom. I am so proud of him.

SYDNEE continues to prove to be an honest miracle. We have received nothing but good news from her recent checkups. At her last one-on-one therapy session, the therapist said she is doing everything a 6 month old baby should be doing and even sitting better than most babies at this age. I was told we can cut our sessions from four times a month to two. At this months Children's visit with the epilepsy specialist, they reviewed her last EEG with me and told me that although they see "some activity" they are not able to confirm/report definite "seizure like" activity. No hypsarhythmia was reported (important and good). They said given that her development is going so well, and if I report no seizures at home, we can postpone her next EEG for one year. ONE YEAR.

When Sydnee was diagnosed with FCD and IS, they told me that all of these things that are happening could be possible (POSSIBLE). As I've said before and as the specialists always remind me, the area of Sydnee's brain that did not form properly (FCD) will never go away. What we hope however, is that the brain has made its detour around this area and she continues to develop as she has been. I am forever being told, ."time will tell...she will guide us." --- In the meantime, I am trying to continue to stay off of the Internet when it comes to searching  for things that could come our way. I remind myself to stay PRESENT and so very THANKFUL. The one thing I hold on to tightly that I did read on the Internet is that both IS and FCD are case by case issues on how the patient will react in the present and future. I have to remember there is only one sweet Sydnee. --- We meet with the neurology team at Children's next month. I hope to have another great check up with them as well.

I am holding things down while Tyler is away. I am ready for him to come home to us. My arm/neck/back are giving to the "wear & tare" of being a single mom. If I'm not holding a 15 pounder its a 30 pounder in my arms. Work is also busy which is good. The kids are great and healthy which is perspective.

Here are some pics over that last couple of months. Thanks to all of you who continue to think about us ask how we are doing, how Sydnee is doing, and for your continued thoughts and prayers. You are all receiving ours as well.

Playing "protect the castle!"

"Headbands" ... I had one on too. All courtesy of Sam.

Super Kids!

... 2 seconds later

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.