Changes to the banner.

It's perfectly simple: Dad, Mom, Boy, Girl, Dog, Fish, Turtle, and Frog. What more could you ask for? We've lost the fish...yes all of them...and the frog left us a while ago, yet, I'm attached to our site's banner so it will not be edited. Colin's decided to replace his fish...yes all of them...and the frog with 2 newts (water salamanders). That is as soon as his mom takes the time to clean out the tank...ewwww. Oh, and don't worry...old Philbert the turtle is in for the long haul. I'm sure he'll pass us all by. Do they allow turtles in dorms??

Quote of the Day.

"A train of thought is a good thing as long as it is on the right track." No idea who said this, but I simply agree.

A duh moment and a revelation.

We all have to have them occasionally...

X-ray revealed constipation. Proof, once more, that my boy is getting older. Not because of the issue at hand so much as me being totally unaware of it. Gone are the days that I know every tidbit of his life down to the timing and consistency of his pee and poo. Sigh and a laugh. So, we started him on MiraLax a few days back, a small dose mind you, and ended up heading in the opposite direction of not being able to go. MiraLax does not usually cause this, so I've been racking my brain trying to figure it out...until today. Duh! He's been on an antibiotic for almost a week. Duh! Duh! Duh! No idea why it took me so long to figure it out. So, needless to say, bathroom is a go for now...we'll have to reassess at a later date. Although, I personally believe that all these poo problems were the cause of our pee issues.

And...on to my revelation: I had a revelation the other day, that it is quite possible that I am the only person that reads this blog on a daily basis (besides Nat and Alicia -- which is about the same as me reading it since they are really the only 2 that know the true ins and outs of my daily life other than me...and Jerm, of course and my Dad cause a direct e-mail is sent every time I post)...so I've decided to treat it like a diary. Simply because it's weird writing to an unknown audience...so going forward, I'll be treating my blog like a diary as it has become unbelievably therapeutic for me...my own warped therapist of sorts...

So, if you don't care about my kid's poo...tough luck. I wasn't sharing for your personal experience but for that of my own and prosperity...in my reference of this unexpected journey that is my life. (Although if you happen to be someone other than the above mentioned, I'm glad you're reading and hope you continue.) It's important for me to share my experiences to help me deal with them. Otherwise, my thoughts wander aimlessly in my stuffed mind and end up squeezing out -- "POP" -- at the most inopportune moments. Much better to let it all flow here for the sanity of those closest to me.

Nat said it best the other night as Colin and I struggled with cream and pull-ups before bedtime (we happened to be chatting post bathtime): "I bet you didn't think you'd still be dealing with this now." Nope sure didn't.

I never expected to be raising a child with a single medical issue, let alone numerous medical issues. Applying diaper rash cream at 7, sitting in doctors office waiting rooms day in and out, watching my child undergo more medical treatments in the blink of an eye than I will EVER experience in my lifetime. I never expected to spend my nights fretting about what the next appointment will bring, what the next week at school will bring, what the next day's unbelievably difficult question will be from my sweet boy. I never, ever expected myself to become a mom who feels so crazy sometimes that she wants to hold onto him tight and not send him out into this cruel, cruel judgemental world full of judgemental people who just don't see how unintentionally hurtful they can be. There are days I drive myself crazy with the thoughts that run rampant in my extremely overfilled brain...a brain that holds it all...the complete and unedited medical history of my boy with this unexplainable syndrome that eats away at my heart.

Too cool for school.

Apparently, now that Colin's a big 2nd grader, he's too cool to have his mom take his picture on the first day of school. He was annoyed at me during the entire picture taking extravaganza. Hate to break the news...he has years and years and years left of this ritual. Monday started the new school year. Colin was excited to be back with his friends. I believe each day he was finding me a bit more boring and Chloe a bit more aggitating. So, we have our nice long afternoon naps back and routine. I love, love, love routine. I crave it.


After returning home and being drilled about the first day and his new teacher, he responded with only the most important facts: 1. His teacher is louder this year than his teacher last year. 2. She gives out FREE candy. (As opposed to the candy he has been paying for all of his life.) and 3. Recess is still the best part of the day. The end. He had nothing more to say.

In the morning, Chloe was waiting for the bus with Colin...and discovered shadows!! She was so funny. She just kept pointing and saying "dis" (this). But, my response of "mommy's shadow" was severly inadequate prompting a "naaaohhhh!!!" (no)and urgent, shrilly "dis!" We went rounds about that one for a while until I finally gave up...one day I will learn that fighting with this child is pointless. She has it all figured out.

Tonsilitis.

So, that's a new one. Colin's actually never had that before. We had our ENT check up on Thursday and is on antibiotics for the tonsilitis. Everything else looks good and we are setting the ball in motion for another repair with a full thickness skin graft of his left ear. He has requested that we put it off until December over Christmas break so he won't miss school. He had a dentist appointment and his jaw is still shifting...3 mm total. We see craniofacial again and September, so we'll have to see what they say about the shift and the tonsils. They have concerns for removal because of his paralyzed palette...increase of infection and such, but ENT has concerns of continual infection becoming a new issue...so time will tell I suppose.

A Boy's Weekend.

Amusement park, baseball game, power plant...it was a boy's weekend. Last Saturday Jeremy's employer sponsored a day at Lakemont Park and the Altoona Curve. We decided to leave Chloe at my mom's to spend the day with Colin. It was his first real-deal baseball game and he had a blast...double-header and all. After a full day of roller coasters and waterslides, we had all intentions of leaving before the end of the 2nd game...he would have none of it, and I quote "what's the point of watching if you don't know how it ends." True, true.



Sunday, Jeremy made arrangements for Colin to tour the plant with him. It was his day off and Colin's always been really interested in seeing what Daddy does. So he put on his "work clothes" and all of his gear, including a belt to hold his flashlight and new boots bought specifically for the occasion. As he was waiting for Jeremy to finish getting ready, he sat back on the couch, crossed his arms behind his head and propped his feet, boots and all mind you, on my coffee table, and I quote "I look just like my Dad, huh?" Yes, yes you do.

The day included a tour of the plant, candy, "driving the bulldozer," and $5 in pay from Jeremy's boss. Needless to say, he came back covered in coal and happy as a clam...what's not to love about 4 hours at a power plant with a bunch of dirty men. I have my own thoughts on that.


As Colin was removing his play clothes to don his work clothes...Chloe decided she was going to work too. She demanded that I help put his shorts and t-shirt on her. Funniest part, other than the stubby little-person look it gave her, was that the shorts fit around her waist without issue. She cried so hard when they left her behind, poor baby, and refused to take the clothes off the rest of the afternoon. She even wore them for naptime.

I'm a liar...7-year check-up.

Just to clear the air...I'm a liar. Colin only gained 7 pounds this year. Not 10. :) and he grew 2 inches. So he's in the 50% for his weight!! and 75% for his height!!! I can't believe that! They started him on Singulair for a weird daytime/playtime cough that they're presuming to be his asthma, and we have to head to get an x-ray of his abdomen early next week because his belly is hard, presumably constipation, although he is showing absolutely no signs of being constipated. But with history and such, they want to be sure. Especially with the continued bedwetting and increase in peeing. Which leads us to calling neurosurgery, which our pediatrician is going to do for me on Monday to see what the next step is...do we wait it out to see if it gets any more frequent...perhaps it's a typical 7-year-old thing (waiting too long to go, too many drinks too late), which of course is possible. Nothing too weird about a kid peeing a lot other than where we were 8 months ago. So...75% CRAZY!!

Holding at 30ish.

It's been 6 months since spring checkups at the specialists, so today was the first of the fall visits. Can't believe it's here already. Colin's ortho doctor said he is holding at 30ish degrees. He said it's all still a jumble, lots of hemis (hemivertebrae) and pieces. Like I was expecting the bones to have miraculously returned themselves to perfectly full and shaped vertebrae. Although I admit, I've had a dream or two that ended this way. But, he's been holding at 30ish for over a year now. Although that can change at any point. Nothing is predictable with congenital scoliosis and he again warned us of that. It could change drastically overnight. How is that possible? It just is. Growth spurt, compaction or fusion of bones, blah, blah, blah. So, I'll continue to live with my anxiety in this regard and he'll see us back in 6 months. He ended the visit with the following comment: "He's in good condition for the condition that he's in." True. True. and still pondering that. I hate this "condition" that he's in.

California dreaming...and soaring...

I have been blessed in my life through my father's fortune and hard work. His life in the Army led him to a variety of different places and my sisters, brother and I were fortunate enough to get to share experience things and see places most people spend a lifetime dreaming about -- summers sailing on the ocean, afternoons swimming under waterfalls in Panama, romping on black-sand beaches and playing with monkeys and the typical summer fun of amusement parks and museums. This summer I saw in Colin's eyes the way I used to feel when visiting my father. Amazement at experiences in a life that feels unlike your own. My father's hard work post-military retirement has enabled him to live a comfortable life in California and, like any good grandpa, he was more than generous with opportunities while we visited.


Our flight arrived on Friday evening. After attempting to locate a piece of lost luggage (to no avail) we hopped on my Dad's plane (he reaffirmed his pilot's license a few years back) and flew (see pilot Chloe above) to his weekend home in Mendicino County. It was so nice there (see the view below). Some of the most beautiful beaches I've ever seen. It was so nice to watch Colin and my nephew Tanner (below as well). The joy of being on those beaches and with each other and their Grandpa (who, of course, is the best of all grandpas).







Chloe actually ran a fever for the first 4 days but by the time we headed back to my Dad's house in the Bay area, she started to come around...a virus of sorts the emergency room doctor told me. It never fails...emergency room on vacation. We haven't been on a vacation since our honeymoon that didn't require a trip to the emergency room. A few years ago...we made 2 trips. I think a lot of her sickness was brought on from missing daddy and "home." She spoke her first sentence while there: "Daddy at home." Well, it was a little more like "Daee ah ome."

Wednesday, we flew to Disneyland for the day...yes, I said flew. Amazing. The boys had so much fun and Chloe got to spend the day being spoiled by her Grandma. It was on of the most fun days I have had in a long time and Colin can still talk for a good 40 minutes straight about it. It was unbelievable. Flying to Disney for the day...who does that?


The week also consisted of a whole lot of great food, a good bit of nice wine (not for the kids of course), Go-Carts, mini-golf, Chuck E. Cheese, a place called the Jungle, which is like Chuck E. Cheese on overload, and more McDonald's and Burger King than my child should ever see in a week. I also got the chance to hang out with Rachel, my bestest ever of friends for an evening. She recently moved to Treasure Island and is so close to my Dad. It was soooo nice.

To top it off, my dad and his wife recently added a new member to their family, a toy fox terrior named UV...I thought Colin might try to sneak her into a suitcase to bring her home. He is so in love. (Notice the matching shirts below.)


I count the blessings in my life daily. I have been blessed richly and experiences like our week in California leave me in awe wondering how it came to be that this is my life. My kids are blessed to experience all of these wonderful things and I am so thrilled that they have been given the opportunity! I am so happy with what I have and even more so...who I have. Thanks, Daddy!

Our pistol slinging pirate.

Things have been crazy busy since getting home and I haven't had the time to post. Thought I'd pop on to share my newest favorite picture of queen bee, the diva herself...as a pistol slinging pirate.

The Best Says...

We are already recieving the best care in regard to Colin's ear. Turns out, our doctor spent a few years training with the doctor here in the Bay area, who said he really felt that our current ENT doctor has done an excellent job. He had a few recommendations for further revision but really thought that we were on the right track. It's good to have a professional affirm that we have made a good decision in regard to our choice in doctors. It has brought some peace of mind.

The kids are having a blast and I have a ton of pictures that I'll post once we return. It has been a busy, fun, busy, exciting, busy, busy week.

In 6 months...

We will have another MRI of the total spine conducted. That was the conclusion of today's call from neurosurgery. Nothing has changed drastically, which is great. The syrinx (fluid-filled cavity in the spinal cord) has not increased in diameter, which is great. But, it is still rather long, which is concerning for a possibility to retether. So, we will continue to watch for signs of retether and monitor it again by MRI in another 6 months. Not bad, not great...but not bad.

Happy Birthday, Colin!

Happy Birthday to my boy! The past 7 years have flown by. I can't imagine a life without you. The day you were born was the most significant day of my life. I spent our first evening alone, after everyone went home, examining your little fingers and toes. It was completely amazing to me to see all of the traits of your Daddy, who I loved so much, on my little tiny baby. You had his exact toes, just littler, his exact fingers, just littler, his exact leg shape and nose, all just littler. So amazing. I am so proud of everything you have already become. You are my life, my heart, my everything.

Do you know how much I love you? I love you more than the stars in the sky, more than the fish in the sea. I love you more than anything or anyone, anywhere.

Happy Birthday, sweet boy!

My boy is a rock star!

Arrived at the hospital at 6:45 this morning to prepare for sedation for the MRI. The full spinal MRI can take hours and, obviously, a 6-year-old isn't normally expected to be able to lie completely still for the amount of time needed to retrieve the pictures.

Colin's tears over the last few days haven't been over the MRI itself, but the sedation. The sedation used is slightly different that that of surgery and for whatever reason usually nausiates him, which is odd because the surgery sedation usually doesn't (usually).

He asked me, in front of our nurse, why he had to be "put to sleep." The nurse explained the need to lie still and Colin responded that he could do that. So, they let him give it a try. If you've never had an MRI, here's a quick explanation: You lie on a bed that slides into a really tight tube. The entire time they take pictures the equipment makes sounds that reminded me of mack truck jake breaks and honking mack truck horns times 50. The sounds continue the entire time...you have to remain completely still or they have to repeat the process for adequate pictures.

Colin did it!!! They plugged his ear, prepped him. Told him to relax and rest if he could. I am so proud and was so relieved! They didn't have to repeat a single image. I watched him the entire time...he flinched at the first sound and after that stayed completely still. Although, he admitted after the fact that he wiggled his toes once and opened his eyes twice. :) What a relief. Even the technicians were amazed. What a big boy. I sat there watching the entire time contemplating if I thought that I could have laid there that still. My conclusion: Probably not. He never ceases to amaze me.

Praying hard for the results to come quickly and to show, well...nothing.

Happy Birthday, Jeremy!

From here on out...29 forever, right?!? Love you much.

Bye go the carefree days of summer...

Thursday will end our "carefree" summer months. I work hard to avoid scheduling appointments/procedures/surgeries in June and July. It's important to me to give Colin a break from it all...shoot...to give all of us a break from it all. So after over a month with nothing more than dentist and regular pediatric checkups, we head to Children's Thursday for a full spinal MRI. They will be looking to see if his cord has re-tethered and how it has healed internally. They'll also recheck the neck bones to look for increased fusion and to make sure that the bones are not compromising his spinal cord. Please pray hard for Colin that all is well.

Up until a week ago I was confident that it everything was well. From the date of surgery until last week -- over 6 months -- we were completely bed wetting and urgency free. Last week, we had two major bed wetting episodes and he has been "running" to the bathroom more. Amazing how a little pee can make a mom's mind turn. I have been working hard at trying not to think about the negative possibilities of anything to do with GoldenHar syndrome...to be honest...I have been failing.

The break from appointments in nice but returning is always hard...and returning with the first one an appointment with anesthesia makes it even more rough. He is dreading it and it brought him to tears yesterday. I hate this for him...I wish I could endure it all in his place.

Last fall rocked our world. After YEARS of running through lists of could happens, we were slapped with many that did happen in a matter of months...

I used to look forward to appointments. One more thing I could check off the list...one more appointment we'd made it through without any of the things that "could" happen. Now, I seem to be anticipating "routine" checkups months in advance. My mind has been filled with worry about the future and I can't seem to get my thoughts to avoid the negatives. It makes for long nights.

God said..."I'll lend you my child..."

I'll lend you for a little time a child of mine, He said ...

For you to love while she lives ... and mourn for when she's dead. It may be six or seven years, or twenty-two or three, but will you, till I call her back, take care of her for me? She'll bring her charms to gladden you. And shall her stay be brief, you'll have her lovely memories as solace for your grief.

I cannot promise she will stay, since all from Earth return. But there are lessons, taught down there, I want this child to learn. I've looked the wide world over in search for teachers true, And from the throngs that crowd life's lanes, I have selected you.

Now ... will you give her all your love ... nor think the labor in vain? Nor ... hate me when I come to call ... to take her back again?

I fancied that I heard you say ... “Dear Lord, it will be done! For all the joy Your Child shall bring, the risk of grief we'll run. We'll shelter her with tenderness. We'll love her while we may, And for the happiness we've known ... forever grateful stay.

“But shall the angels call for her much sooner than we've planned, We'll brave the bitter grief that comes ... and try to understand.”*

I will spend the rest of my life striving to give my children everything that Alivia's parents managed to provide to her in just over 2 years. There are many thing in this world I struggle to make sense of and this has been added to the list...

Sweet peace, sweet Livi.



(*author unknown)

Please, God! Heal Alivia.

1 John 5:14-15 tells us, "This is the confidence we have in approaching God: that if we ask anything according to his will, he hears us. And if we know that he hears us -- whatever we ask -- we know that we have what we asked of him."

Please pray for Alivia. She has been moved to intensive care. I know that many who read this don't know her. It does not matter. She is a baby; she is sick; she needs healing. Please pray for that. Nothing short of a miracle will do.

My heart is aching for their family. Please, God.

My Two at the Zoo.

Colin's favorite was of course the aquarium. He loved the shark tank especially. He loved it all though. Surprise, surprise. He is as obsessed as always with animials. Chloe was relatively unimpressed by all of it. She was more excited about her Capri Sun and cookies...the elephants got an "ooh" and she squealed at a few fish, but otherwise, she was just along for the ride.

Chloe's Celeb Encounter

Chloe had her first run-in with a Steeler this weekend. We had a chance encounter with Steeler Alan Faneca on Saturday after participating in an Epilepsy walk in memory of Julie McCormick, a friend from high school.

I asked Mr. Faneca if he would kindly sign my kid. He did. :) It must have tickled because she was giggling and wiggling. So funny.

Myself, Chloe and Natalie. It was a nice day, yet bittersweet. Julie is very much missed and I would much rather have done the walk with her. Regardless, our team did a pretty good job raising money for the cause.