Baby Sister & Batman: December 2012

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

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.