Medicine Corner

We've dedicated a corner of our living room to Nicholas's equipment and we've dubbed it "the medicine corner."

Technically, he's not getting any medicine while there, but we hope he feels better when we're all done, like he does when he gets medicine. My wonderful friend, Lyndsey, gave Nicholas this owl bean bag chair last year for Christmas and it is getting lots of use, especially with Nicholas's cold. Yesterday we got a suction machine for him (on the left) and we've been using that and the cough assist (on the right) several times a day to keep his mucus at a minimum. Nicholas hasn't really taken to his "medicine corner," he cries whenever we head that way, but he always feels much better when he's all done.

Camas Boo Bash

Koby and her little Transformer, Talon
Me and my puppy

Talon giving Nicholas loves



This afternoon we joined my cousin, Koby, her son, Talon, and Talon's friend, Brayden, for the annual Boo Bash in downtown Camas. The owners of the cute shops in downtown Camas pass out candy to all the little kids that attend. Boy, it is one popular event! There were soooooo many people there! This year, I pushed Nicholas in his stroller and dressed him up, but he didn't get any candy...he's too little and Jeff and I would end up eating it all. He has a runny nose and was tired so he just sat back in his warm costume and watched all the kids. These kinds of events are so bittersweet for me. I enjoy going to activities like this with Nicholas, but find myself looking at ALL the kids there who are so healthy, walking everywhere, and I get a little sad. Don't get me wrong, I enjoy myself, and Nicholas seems to enjoy himself as well, it's just that I find myself praying harder and harder for a cure after getting home from things like this.


Hopefully the money we have been raising for Unite for the Cure will help. Today we made it to our $5000 goal! We still have 23 days left for the Beauty Temptations Raffle Fundraiser and the Halloween Bash is this weekend. Both events will put us WAY over our goal, I am sure.

We are so blessed to have so many friends and loved ones who have generously donated time and money to help organize fundraisers and make donations. Thank you so very much! We could not have done this without any of you!

Pumpkin Carving

Tonight Jeff's youngest sister, Jami, and her husband, Kris, came over to carve some pumpkins in preparation for next weekend's Halloween Bash to benefit Unite for the Cure.
Nicholas enjoyed watching everyone start the pumpkin carving before his bedtime...he called out suggestions to us as we picked a carving template for our pumpkins.

Jeff, Kris, and Jami hard at work.
Kris's finished pumpkin...

Jeff's finished pumpkin...

My finished pumpkin ( a vampire biting the neck of a woman)...

Jami's finished pumpkin.

I think I am going to pick up at least one more pumpkin to carve this week. I want to do a cute jack-o-lantern face for Nicholas that has the same teeth that he has in right now. Stay tuned for those photos later in the week.

In other news...tonight Jeff's good friend, Scott, came over to visit and presented us with a very generous donation for Unite for the Cure...$155! We were shocked and so happy! Scott got all of Jeff's Portland friends together who wouldn't be able to attend next weekend's Halloween Bash (for various reasons, hunting trips and moving, to name a couple) and they all chipped in to help Nicholas! What lovely friends we have!

Thank you all so very much, now we are only $175 away from our goal and still have two fundraisers to go!

New, New, New!

Nicholas finally fits into this cute brown vest that I bought him last winter! It's definitely time to pull out the warm winter clothes...it's chilly outside!
Today, because Nicholas is growing so much, he went into Shriner's Children's Hospital to be fitted for new KAFO's (leg braces) and a new TFO (body brace) since the ones he uses now are starting to become too small. He has been shutting his eyes whenever I pull out my camera so he is not subjected to that darn flash!

Here is a photo of the leg molds.

This afternoon, a friend from high school, Sarah (Murphy) Collins, stopped by to give us the leg warmers we ordered for Nicholas. He will wear them under his KAFO's when he is using his stander.

Aren't they cute? Thanks, Sarah, they fit perfectly and Nicholas already got a chance to try them out this afternoon!

17 months + 1 day

With Jeff gone at training this week, it has been a bit hectic around here, so I am one day late in posting this for celebration of Nicholas's 17 months on Earth. Yesterday afternoon he joined me outside while I pruned two of our rosebushes that grew over 6 feet tall this summer and then fell over during last week's wind storm. Nicholas relaxed on the patio chair while I tried not to get poked by thorns!

Happy 17th months, munchkin!

Discovery

Nicholas was crabby, tired, and out-of-sorts all day today. I thought he was cutting his one year molars, but this evening at dinner I discovered the reason for all the crankiness. I think he is cutting his molars, but he also cut a new bottom tooth on the left side of the two he already had. Surprise! No wonder he wasn't feeling quite like himself today!

Yay for new teeth!

BOO

Yesterday Nicholas and I got into the Halloween spirit by decorating our house, then at bedtime, I surprised him with new Halloween PJ's! Tomorrow we are off to find him a new Halloween costume since the turtle one I orginally purchased is now too small.

I am looking forward to carving pumpkins soon and dressing up as a vampire for the Halloween Bash to benefit Unite for the Cure party that my sister & brother-in-law are throwing on All Hallows Eve! I love this time of year!

Hayden & Ella

This afternoon Nicholas and I went over to the Simms' house to visit the newest addition....baby Hayden! He is one month old now and is so adorable! Nicholas also enjoyed playing with Ella Morris, who lives next door to the Simms' and is the daughter of a friend of mine from high school. Ella made him giggle when she tickled him and played peek-a-boo!
What a fun afternoon!

Vote for Alan Hargrave

My dad, Alan Hargrave, is running for re-election as a port commissioner for Camas/Washougal. He has served as commissioner for 12 years and has a wealth of experience and knowledge in this position. Yesterday, the local Columbian newspaper endorsed him for commissioner. Here's what they wrote:

In Our View, Oct. 13: Washougal Choices
Voters face crucial decisions in races for port commissioners and mayor
Tuesday, October 13 1:00 a.m.
Alan Hargrave has learned a lot about RiverWalk. He had perfect view as the Port of Camas-Washougal’s $350 million riverfront project collapsed in 2007 amid accusations about denying public participation and inadequate vetting of developers.As a port commissioner for a dozen years, Hargrave was immersed in RiverWalk, which to this day remains the sorest subject among residents in the southeast corner of Clark County. "We made mistakes, and we learned from it," the genuinely remorseful Hargrave told The Columbian’s editorial board recently. "We should have written a more precise option agreement with developers, we should’ve included the public more in the process and we should have more thoroughly researched other parties in the agreement."Hargrave has earned The Columbian’s endorsement for re-election for several reasons. First, he knows what went wrong with RiverWalk and understands how to proceed properly with economic development matters. That knowledge comes in part from his former service on the board of the Columbia River Economic Development Council. Also, unlike port commissioner Jim Carroll, who was ousted by voters in the Aug. 18 primary, Hargrave has learned lessons from RiverWalk. His corrective efforts have been strong and his regret is sincere. Prior to RiverWalk Hargrave had wide acceptance among voters for reasons that persist today: his knowledge of the community and his experience as a local businessman.Finally, Hargrave simply is the best candidate in the Nov. 3 election (ballots will be mailed this week). Bill Macrae-Smith is giving Hargrave a tough battle in the campaign because of RiverWalk and because Macrae-Smith is a former port commissioner. But he has not served on the commission in more than two decades. He does not match Hargrave’s savvy on all port issues, and he does not match the incumbent’s drive and determination.

My dad has been a member of this community for his entire life. He strives to make a positive impact on our small town. On a more personal note, he is the most hard-working person I know. He's honest, straightforward, and kind. He is charitable both with friends and family members and in the community. He values his position as port commissioner and always keeps the best interest of the people in mind when making decisions. In short, he's the best candidate for the job!

As his daughter and a Washougal voter, I encourage you all to vote for my dad, Alan Hargrave, on November 3rd!

Raffle Fundraiser

There are two new baskets to be raffled off at the Beauty Temptations Fundraiser to benefit Nicholas and Unite for the Cure. They are:

1) An iPod Nano courtesy of Julie and Randy Feldman owner of the Mac Pac store

2) A Mountain Man Snack Pack Basket courtesy of Mountain Man

There are several other baskets to choose from...a cooking basket, a tutoring basket, a Scentsy basket, and a Twilight book basket, just to name a few. Go into Beauty Temptations (2001 E St Washougal, WA 98671) and buy your $1.00 raffle tickets today! The drawing will be held on Friday, November 20, 2009.

Also, we are only $535 away from our $5,000 goal, so every dollar helps us get that much closer! Thank you to everyone who has so generously supported us these past two months, and thank you especially to Katie Lewis for organizing this raffle fundraiser for us!

Worries

Any mother will tell you she worries about her children, but the worries of a mother who has a child with a terminal illness are profound. In the last few days Nicholas has been extremely floppy and he has not been wanting to feed himself. He has also seemed to have difficulty using his right hand. I noticed these things, but didn't become concerned until my mom pointed them out to me on Tuesday afternoon when I picked Nicholas up from her house after work. I guess there's something about my own mother pointing out my child's weaknesses that made it very real to me.

I am hopeful that Nicholas's lack of strength has to do with teething or a growth spurt, which would make sense considering that he has had periods like this since he was around 6 months of age. They seem to last a few days up to a week and eventually his strength always returns. In the back of my mind, however, there's always that nagging question, "is this the start of the end? Will Nicholas's lack of strength just continue to decline?" I hate having to wonder all the time when my child is going to become ill. I hate having to think about him not being here with us. I hate that I have days clouded by utter despair. Days where I don't want to leave my house, don't want to do anything, don't want to leave my child's side. These days seem to be more frequent lately and I sometimes wonder if it's just now hitting me, if the severity of Nicholas's diagnosis has just now struck my heart. I hate that people look at him and tell me how cute he is and then say how tired he looks because he doesn't move like other kids. I hate that I sit here crying while I type this post because I truly love my child with all my heart and I would trade place with him in an instant. As a mother, I want to take this away from him. I want him to experience life without the stares, without the questions, without the handicaps.

I hate this disease and all that comes with it.

Weight Check

Today Nicholas had a weight check-up at his pediatrician's office. Boy, I love that place! As soon as we walk in, nurse Holly comes to take Nicholas right back to the examining room. The last three times we've been there, we haven't had to sit in the waiting room at all! It gives me such peace of mind, especially during cold and flu season, since Nicholas isn't around all the other little kiddos.

Anyway, Nicholas weighed in at 19 lbs 2 ounces (one pound more than he weighed 6 weeks ago), so he's finally putting on weight! Yay! The Pedia Sure seems to be helping with his weight gain. He also grew 1.5 inches from his visit 6 weeks ago and now measures 33 inches.

He also received his flu vaccination. Evergreen Pediatrics did not have any H1N1 flu vaccinations, so we will have to check back every couple of weeks to see if they have any available so Nicholas can get that vaccine, too.

Do You Hear What I Hear?

Gramme taught Nicholas how to make this cute little sound.

Adorable, right?!