I think I need to take an extended weekend, mini-vacation a couple of times a year.  My time away these past few days has been just what the doctor ordered.  

Blissful peace and quiet.

Hot meals that were cooked for me, with no clean up involved.

Sleeping in until 9am.

Adult conversation, uninterrupted.

I could get used to this!   Though I thoroughly enjoyed my time away from home, I am looking forward to returning.   Returning to my family, to my routine, and after all the eating I did this past weekend, returning to my diet as well...

Thank you dear Marlena, for being such a wonderful hostess, tour guide and taxi driver...I love you and will be looking forward to our next visit together!

Feelin' the Butterflies!

You'd think I'd be running down the concourse through the airport to be the first one to get on the plane...instead, I sauntered along, eyes straight ahead--nervous as hell.  That said, I was one of the first to board the plane anyway.

I have a love/hate relationship with flying.  I love the THOUGHT of flying..getting away from the hum drum of this life of mine.  But, when reality hits the fan and I actually GET to fly, the butterflies in my stomach take over and I begin to second guess my need to get away.  And believe me, I NEED to get away.

Gulp.  I did it. Today.  One step at a time.  I boarded the flight from Colorado Springs to Denver--the first leg of my journey.  I'm pretty sure I left fingernail marks in the armrest of the plane as I clung to it for dear life, but I did it.  I made it to Denver in once piece.  I survived all of the 20 minutes it took to get there.  No worries, I have a 3 hour layover in Denver to come to grips with the almost 3 hour flight ahead of me yet. I've also got my good friend, Xanax to help...love those little blue pills!

The next leg of my trip is Denver to Portland, Oregon, where my BFF from High School will be picking me and my dulled fingernails up and driving us to her place in Washington. Destination: Seattle.  

It only took me about an hour to figure out how to hook up to the free wifi, so in the meantime, I wandered the l.o.n.g. concourse sniffing out what to eat.  I ended up at Panda Express for some Firecracker chicken and chow mein.  I ate a hot meal.  All by myself. No kids. Just me, myself and I.

Weird.

It almost feels overwhelming, if THAT makes any sense, to not have any kids with me. Again, weird. But, I get to be without kids for 96+ hours...   

Imagine that. 

I'll update more later, IF my plane makes it to Portland in one piece.  Breathe in, breathe out...

Hiatus Unintentional, Sorta

A year has gone by since my last post.  A whole year.  I'll spare you the excuses as to why and just say "I'm back"!

I've missed blogging.  A lot.  So forgive me if I go off on tangents that don't happen to make any sense. My blogging skills have faded in a years time, and so has my brain.  6 kids is sure to give one a case of brain drain.

Anyway...

We've just pulled off Christmas Break 2012.  And I say "pulled off" in all truthfulness.  That said, I have some explaining to do.

In November, right around Thanksgiving, Roy and Caleb moved back in with me and the kids.  Roy and I have been separated for almost 2 years and divorced for almost 1 year now.  Caleb lived with Roy for about a year and a half, while I had the 5 other kids with me.   Getting to the point, Roy and I decided that since we've been able to form a great friendship over the last year, we needed to try and parent together...and have Roy more in the kids lives.  It also makes financial sense for us to live in the same house and share the rent.  Takes some of the weight off of both of us, you know?

Back to "pulling off" Christmas break...nothing surprising that having a houseful of kids trying to adjust to one another again was hard. Really hard.  But, we pulled together and made it work, successfully!

I realize this was one of the most boring posts ever, but the blanks needed to be filled in so there isn't mass confusion later amongst my readers (thanks Mom!) later...

I Survived Christmas Break 2011...Almost

I can only say almost, because it's not quite over yet. Three days and counting.

Santa Claus made his rounds at our house, as well as the stomach flu. Fun times. Oh yeah.

I always feel like I am the only mom that is waiting on pin and needles for "breaks" to come to an end and to send the cherubs back to school.  Everyone else seems to enjoy the "free" time with their kids.  Me? No, I run a tight ship. A rigid schedule. I don't like to live on the edge.  I like to know that by 8:15am the kids will be safely deposited into the care of their wonderful teachers...such blessed souls.   Besides, I still have Faith, whom I have decided is part monkey, ( DEFINITELY her father's DNA) that I have to peel from the light fixture hanging over the kitchen table.  This kid IS a full time job all on her own.

She's lucky she's so cute.      See?

I have recognized though, over the last few months that I NEED a break. Regularly. From ALL of my children.  Not that I don't love them dearly, but Lord, they can drive me to the brink of insanity. No really, it's true.    Seeing as how I am now a single mom, it makes getting a break all but impossible most of the time, however grateful I am to the kids' dad for working two jobs so that I can stay home with them and not have to be a "working" single mom as well.

Respite. I found it. I am going to use it. For Faith. For the other kids when needed.  Sure, go ahead, look at me like I have two heads and wonder why in the world I would use something like that...something like respite.  Respite is defined as a temporary rest period, utilized by caregivers of the ill or disabled. Six kids. Two with ADHD. One with Tourette's. One with Down syndrome.  One typical teenager.   Judge me if you want, but to make myself a better "caregiver" to my daughter AND all of the the other children, I am choosing to do this for them and for myself.

Anyway, just putting it out there.....my heart on my sleeve. 

Sie Center For Down Syndrome Visit #1

The day has finally come. I've been looking forward to it for 6 weeks now.  Truth be told, anxiety has been mixed with the excitement.  I was all eyes and ears taking it all in.

My brain is on overload with the information I was given today.  That's not a wild fire you smell, it's my brain matter.  Really.

The kids outside the Children's Hospital

Getting ready to go in the center

First, Faith was weighed and measured.  She weighed in at a whopping 22lbs and just over 32".  Peanut!

Then we met with Patricia Winders.  She is the author of several books relating to Down syndrome, regarding gross and fine motor skills.  She was VERY impressed with Faith's motor skills...saying she was "ahead of the curve for a child with Ds".   I was so proud of my girl...she's a rock star.   Pat had Faith running, kicking a ball, bouncing on a trampoline, and climbing up and down toddler sized stairs.  Pat recommended that we have Faith fitted for "Sure Steps" orthotics to help strengthen her heels and provide her with more of an arch in her feet rather than walking so flat footed.   So, she was measured for the orthotics today.  They will be have adorable little bumble bees all over them with matching yellow straps.

Kicking a ball while"running" with Pat.

Showing off her stepping down skills, with a little help.

We had a little "lay over" in the waiting room waiting for the doctor.  In that 10 minutes, Faith managed to take a head dive off a chair and landed right on her mouth.  Blood everywhere.  The nurses came running.   Turns out she split open her upper lip frenulum, leaving a gaping hole above her top teeth.  Luckily, it is such a vascular area, it will heal quickly with no intervention needed.  A popsicle, a teddy bear and a cozy quilt made it all better, thankfully.

Next we met with Dr. Francis Hickey, a developmental pediatrician that specializes in kiddos with Down syndrome and their unique health issues and challenges.  He went over her medical records that were compiled for him over the last 6 weeks from all of her specialists here in the Springs.  He was very impressed with her pediatricians and their attention to detail with Faith's medical conditions. After talking to us and his own examination, it was determined that Faith needs to see an ENT as her tonsils are "huge" ( greater than a +3...+ 4 is the largest they can get).  She needs to be scoped down her throat and have a tonsil and adenoidectomy in the near future.  I was also told by the doctor that after having gone over her medical records and chest x-ray reports that she has "never had a *normal* chest x-ray".  The concern is that she has some lung disease due to micro aspirations of fluids that she drinks and also from her reflux.   Soooo, we will be seeing a Pulmonologist and a Gastroenterologist  in addition to the ENT.  She also has some cardiac concerns with having a coarctation of her aorta and aortic stenosis.  Dr. Hickey also believes that Faith may pack on a few pounds and have less feeding issues once her ginormous tonsils are removed.

We also met with a social worker to make sure things were all on track...they were.  I was so impressed with the level of care Faith received there.

Labs were drawn for celiac disease, thyroid function and blood counts. It was recommended Faith go on a mostly dairy/lactose and gluten free diet.   She will also continue to be followed by a hematologist/oncologist for her ongoing neutropenia.

It was a whirlwind of a day, but very educational and somewhat encouraging.  

More to come...

Happy 4th!

The Dog Days of Summer require eating a nice, cold, juicy slice of watermelon...with your shirt off, of course.

Mmmmm, mmmm good!

Want some?  I'll share!

Nah, I want it all...

Sayin' "cheeeeeeeeese!"

And dancing with daddy was the best part of my day!

A Catch Up, Of Sorts...

I'd like to say that I haven't blogged in the last 3 months because I decided to stay in California, but obviously, that isn't the case.   And, I'm pretty sure they have internet in California too.  I have no excuse for not blogging other than, well, um, oh heck...I have no excuse.

The kiddos have been out of school since May 26th and my mind has been gone since May 27th.   Maybe with enough coffee and diet Coke, I'll have the energy to blog more regularly again.  Time will tell!

Annnnnyyyyway.

      We've kept busy having play dates with friends...

       Having a birthday...

           Being Super Heros...

        Graduating from Preschool...

        Taking naps...

     Doing Yoga in the sand...

     Reading books...

     Hanging with dear friends...

     Playing silly games...

     Going bowling...

     Talking on the phone...

     Eating watermelon...

     Hangin' with Pirates...and trying to be one :)

     Having tests...

     Touching slithering snakes...

     Enjoying the sunshine...

     Being happy with the simple things...

     Riding a pony named Billy...and loving every second of it...

     Hangin' around...

     Climbing trees...

     Kicking a soccer ball...

     Hangin' poolside...

      Lovin' each other...

     Going for walks in the park...

     Becoming "famous"...

      Splish splashing around...

      Soaking up some sun...

     Sitting on Grandpa's lap...

So, there you go...life is busy, sometimes too busy to even blog about it.  But, I'll be back again. Soon. 

Leaving on a Jet Plane...

Don't know if I'll be back again!

I can't wait until Friday.  That's the day Faith and I head out to California to meet up with some pretty special people.  I am excited and nervous all at the same time.  I hate flying. HATE it.  Scares me to death. But, with a little help from my friends (aka, benzodiazapines) I think I'll be fine.

It's going to be a whirlwind trip,  leaving Friday, returning Tuesday night.  But, it will give a great start to Spring Break...when I will have the kids ALL home with  me  until April 5th.  Oy!

I plan to bring my laptop to post pictures from our trip, but I may just be having way too much fun to sit down to do that.

I need to tackle my mile long list of things to do before I leave.  I have so much to do I don't even know where to start.  Of course, I have to clean my house like I am nesting because I do NOT want to come home to a house that needs cleaning...and I had to farm out 5 kids to stay with family/friends and now I have to pack.  15 bottles of Faith's Pediasure and 30 packets of thickener will certainly give my back a workout hefting that through the airport!

Signing off...busy, busy!

Edited to say:  Faith returned to the hematology/oncology clinic on Monday...her ANC went from 0.9 to 1.9 with the help of neupogen!  Ideally, the doc would like her above 2.0, but she made the "safe zone" at 1.9.     We'll be seeing the doc again when we return to keep check on her ever changing counts.  But, for now, she's good!

Neutropenia 101

I thought I'd better hop back onto blogger before too much time elapsed.  So, here I am. Again.

For the last couple of weeks, I had a feeling that something was a little "off" with Faith.  You know that nagging feeling that comes from deep inside? The one that sets off some panic alarms along with worry and anxiety?  Yup, that's the one.    That "feeling" got the best of me and I called up Faith's hematology doc to take her in for what I was hoping to be a quick check and CBC.  Luckily for my frayed nerves, they were able to get her in the same day I called.   I grabbed Faith and my Bff Teri, and we headed off into town to the Children's Hospital Center for Cancer and Blood Disorders.  

Before I give you the scoop, let me share a funny about when I actually called to make the appointment.
Here goes:

Receptionist (we'll call her lady): Good Morning, Children's Hospital Center for Cancer and Blood Disorders, how can I help you?
Me:  Good morning, I'd like to make an appointment for my daughter to come in for a quick CBC.
Lady: Okay, what is your daughter's name?
Me: Faith Newcomb
Lady: Date of birth?
Me: April 16, 2009
Lady: Hmmmm, can you spell the last name?
Me: N e w c o m b
Lady: (silence...)  Umm, do you have an order for her to be seen?
Me: No, I don't, she's been seen there before, many times. She's to be seen PRN.
Lady: Hmmmm, I am not finding her in our system.  Are you sure she's been seen here?
Me: Oh yes, I am sure, she's seen Dr. Cook since she was 9 weeks old.
Lady: Spell her first name please.
Me: F a i t h.
Lady: Oh! FAITH! We know little Faith! Oh my goodness, I thought you were saying "Space" Newcomb!   Oh gosh yes, please bring Faith in at 1:45 to see the doctor.
Me: Thank you so much, I will have "Space" there then!

I got a good laugh out of bringing "Space" Newcomb to the check in counter when we arrived at our appointment :)

Anyway, long story short, after nearly 3 hours in the clinic, it was determined that Faith was heading towards being critically neutropenic again.  Her last count was 5.6, which was totally awesome...about blew the doctor away since she had been down to 0.1!

Here is a quick tutorial on neutropenia:
Neutrophils:  surround and destroy bacteria in your body.
The term neutropenia describes the situation where the number of neutrophils in the blood is too low. Neutrophils are very important in defending the body against bacterial infections, and therefore, a person with too few neutrophils is more susceptible to bacterial infections.
The body protects itself against the constant risk of infection by making a lot of neutrophils. They are your main defense against infections.
People with neutropenia get infections easily and often. Most of the infections occur in the lungs, mouth and throat, sinuses and skin. Painful mouth ulcers, gum infections, ear infections and periodontal disease are common. Severe, life-threatening infections may occur. Often the child must be hospitalized and receive intravenous antibiotics.

Okay, so we're clear on just what Neutropenia is, right?  Good.

Faith's ANC (absolute neutrophil count) was 0.9.   She's not even safe to take a trip to Target if she's not above 1.5.    So, without knowing how long she has been neutropenic again, we dodged a bullet in the fact that she did not develop a serious bacterial infection.  She did get a nasty case of strep throat, but she handled it well after receiving 2 injections of kick butt antibiotics.

So, Faith had to be infused with a dose of Neupogen, also called Filgrastim.  Filgrastim is in a class of medications called colony-stimulating factors.  It works by forcing the bone marrow to make more neutrophils, in turn, increasing the ANC.  


Tomorrow at 10:15, we return to the clinic to see just how much Faith's ANC went up.  If not enough, she'll be infused again.  And now, we'll have to be taken off PRN status at the clinic and go for regular CBC's again. Ugh!   Even with that "ugh" said, I am SO thankful for such wonderful doctors that take care of my little "Space".


Ending with a funny pic...not so funny at the time, but it is now.  Let me preface this by telling you that before this happened, I had JUST cleaned up an entire box of Raisin Bran that Faith dumped all over the place.  Now this??  

"Say what?  Milk falling from the sky? Where'd that come from? Who did that? Me?"


Yes, people, she dumped a FULL gallon of milk.  Fun times, fun times...

Wait for it...wait for it...

Yes, it's me...returning to the blogosphere after a long, unintentional  hiatus.   I find myself missing the cathartic release that comes with pounding out my thoughts on the keyboard, as random as they sometimes are.

Much has gone on since my last post in November (November, really??), but nothing so noteworthy that I need to back step and write about it.

Except for one thing.

One slightly big thing.

Okay, one really big thing.

Roy moved out of our home on February 1st.   We decided to separate as the arguments between us were becoming constant and it was putting our home and kids in a toxic place.   I am filing for a legal separation this week, and after some time, we will decide if we want to finalize it as a divorce.   My heart is heavy and I am torn though.  18 years with the same man.  My WHOLE adult life. Six children. Love. Companionship. Family.  We have many bonds that I am finding hurt like hell nothing else I've ever experienced, save for the grief that came with losing my big brother. Yes, it feels like grief.   But, as some wise woman told me (thanks Mom!)  "it is better for the kids to come from a broken home than to live  in one".

So true, oh wise one. (And Mom, notice I did not say old wise one :)

Even though we don't live in the same house, we still share six beautiful, wonderful children.  We are still a family.   Roy didn't abandon us, he didn't disappear.   Even though I am officially a 'single mom', I am thankful that I don't have the additional burden of having to go back to work to support the kids and myself financially.  I am thankful that Roy works 2 jobs to support us the best he can.

I have to admit, at first, I was full of anger. Full of animosity. Full of bitterness and resent.  Mostly over the fact that Roy doesn't have the "harder" job of caring for six children and being on duty from sun up to sun up. (in other words, 24/7).  I was angry with him for being able to go to work, then go to his home and not have any responsibilities  there other than to take care of just one.   Himself.   Now, though, after 5 weeks of being apart, I have come to realize that he hurts too.  He is lonely.  He misses his kids.  He is stressed too.

Yes, some of those feelings of anger and resent are still there, mostly because this isn't the way I wanted my life and the life of my family to turn out.  But, for now, it is what it is, and I (we ) will make the best of it.   There is more peace in the house without the toxicity between Roy and I...as much peace as there can be with 4 boys and 2 girls...I suppose it's all relative.

I am trying, with a lot of help from my friends and family (and to be honest, a therapist and medication too) to be the best I can be as ME.  Not just "single mom me", but ME.

I am counting down the days until little Faith and I leave on a jet plane to fly to sunny (hopefully) California to meet up with some friends with 47 chromosomes too.   March 18th can't get here soon enough!

Now, what would a blog post be without a picture of my princess?

I can't even begin to catch up from being gone so long...darn blogger locked me out of my account and I couldn't get back in.  Hopefully, whatever went so awry is no longer so.

Anyway...

Today is the eve of Faith's 19 month birthday.  I can't believe it's been that long since she came into my life, my world.  Each day I find myself falling more and more in love with her!

Ready for an update? Here goes!

Faith, what are you up to these days?


* You are WALKING full time now!   Your first fledgling, timid, stiff steps have progressed into your little legs taking you as fast as they can go all over the place.  

* You have four teeth now!   Two molars and two front teeth...all on the top.  So cute!

* You weigh just about 20 pounds...at last check just a few days ago, you were 19lbs 14oz.

* You are 30.75 inches tall.

* You are wearing 12-18 month sized clothing and size 3 shoes. (though the shoes are still a little big)

* You are learning more and more signs each day.   Some of the signs you know are: eat, milk, more, please, thank you, dog, all done, want, cookie, mama, daddy....we are working on more specific signs and I know you will pick them up fast!

* You don't verbalize a whole lot, but you totally understand what is being said to you and you usually respond appropriately.   You are very vocal, just not extremely verbal.

* You love to roam around the kitchen emptying out drawers and cabinets.   It's always funny to find you sitting in the drawer under the stove playing with the pot holders :)

* You love to sit and 'read' books...and you'll sometimes let me read them to you, but you prefer to hold the book and turn the pages yourself.

I am so very proud of your accomplishments!

Now, just some pictures of you lately:

We're Still Here

Apparently, my blogger account was hacked into, thus rendering it impossible for me to log into my blog! That's the reason for my lack of updates...

As soon as I get more than a minute to sit and write, I'll be back!

Catching Up

I know...it's been a while since I blogged.  Thanks for noticing, Mom :)

The kids have been in school for over a month now.  I am LOVING it.  Sam goes 3 half days a week to preschool, so for 9 precious hours a week, I have just my sweet, fun-loving baby girl at home.   I get her all to myself!

Hmmmmm, let's see...what has gone on since I blogged last?  Oh yes, the Buddy Walk!  It was awesome.   Hot, but awesome.   I do have to admit though, that my emotions kind of take a wild ride when I see so many people with Down syndrome.  I look at them and think "Is this what Faith will be like?"

Here are some, but not all, of Team Faith Journey

Thanks to all of my wonderful family and friends that support me in this journey!

Okay, moving on....

Faith has not one, but TWO teeth now.  And, they are BOTH molars!   I expected that she would get her teeth later than a typical baby, but I guess I just assumed she would get her bottom front teeth first.  Oh well...she doesn't seem bothered in the least by her new pearly whites.

We've been plugging along in physical therapy and speech therapy.  Faith has been a movin' machine, even walking, albeit stiff-legged with her little push toy.  And she's been known to climb up on chairs and scare the heck out of her Mama!

See?

We had an OT evaluation this past week, and guess what?  The OT said that she didn't even NEED therapy at this point!  She said that Faith 'scored' at the developmental level of a 14-15 month old (she is 16 months old) and was really doing quite well.   Like I needed her to tell me that, right?   Anyway, they will evaluate her again in 6 months to see where she is at then.  The therapist thought that the 'gap may widen' the older she gets, so we will keep on top of things and go from there.   I was SO proud of my little peanut when she accomplished just about every task the therapist asked her to do.  She was so cooperative and happy the whole time--it was funny because almost every other kid in the place was screaming and crying.  I love my happy girl!

I'm coming up on a very busy week... I have seven, yes seven, appointments on the calendar.  Watch out Starbucks, here I come!

This is the face of Down syndrome

This is the little girl that will change the way you think about people with disabilities.

She sure changed me.

She is more alike than different.

When It's Hot Outside...

We go to the North Pole!  We spent the day at Santa's Workshop today as part of a family event through the Starlight Children's Foundation.

Faith and Gracie on a 'little kid' ride

Not too sure once it got going...

The big Candy Cane Slide

He loved it, really.

Faith, not so much...she was pretty quiet

Yes! It's over!

Eli won't admit it, but he liked it too.

Josh made quite a face!

Getting ready to ride the Space Shuttle

Major butterflies in our tummies on this one!

Dad's turn!

Riding the train...something is very exciting to Faith.

Sam and Daddy

Sweet, toothless Gracie

View from the train...Danger!

Another view from the train...some old wagon.

Gracie on the 'old time' car

Sam loved getting to ride all by his big self!

All of the excitement wore Faith out...nap time!

It was still stinking hot, but a few degrees cooler than down the mountain anyway.

Thank you Starlight Foundation!