Faith's Journey

I Survived Christmas Break 2011...Almost

2011-12-30T21:37:00.000-08:00

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

2011-07-26T19:20:00.000-07:00

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!

2011-07-05T15:39:00.000-07:00

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...

2011-07-01T05:55:00.000-07:00

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...

2011-03-16T08:35:00.000-07:00

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

2011-03-13T07:14:00.000-07:00

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...

2011-03-06T14:04:00.000-08:00

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?

2010-11-15T20:36:00.000-08:00

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

2010-10-26T12:18:00.000-07:00

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

2010-09-11T20:59:00.000-07:00

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

2010-08-23T13:27:00.000-07:00

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...

2010-08-21T18:26:00.000-07:00

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!

Uh Oh....Here Comes Trouble!

2010-08-20T19:01:00.000-07:00

Even though it was 90* in my house today (okay, maybe it was only 82*, but it sure FELT like 90*) I had a hankering for pie. Peach pie. Homemade peach pie. So, while I was making the crust, I turned around and found this in my oven drawer...

Please, excuse the mess all over her dress...she eats like SUCH a baby!

Am I cute or what?

I'm not in trouble, am I Mama?

I can't wait to taste the pie I helped make...sorta!

Icky Sicky

2010-08-17T20:37:00.000-07:00

Poor Faith. She has yet another fever. This is her 5th fever in about 8 weeks. Only one of those fevers has an explanation...the one she got as a reaction to her MMR shot. Last week at this time, she was running a fever up to 103* for about 8 hours. Then, it was gone, just as quickly as it came. I didn't worry too much because he blood work had just come back and it was fine. Her 'counts' were pretty awesome and she was not neutropenic. Now though, I worry, because like I said, five fevers in the last 2 months seems worrisome to me!

As soon as I noticed that she was warm to the touch first thing this morning, I stuck the thermometer under her arm. 101.2*. I called the pediatrician's office and of course, they wanted to see her. 3 hours later, enclosed in a tiny room, after an exam and a urine catheter, a~~nd me needing a drink because I had my 4 year old with me too~~ we were sent away with a diagnosis of 'probably just teething'. Her lungs were clear, her throat wasn't red, her ears were fine, she was playing happily...okay, she is teething, I'll go with that.

Hours later, she is running a 103.8* fever and cranky as all get out. Red rimmed and teary eyes, along with her 'sad lip'...oh man, the sad lip gets me every time!

Somehow, I'm thinking it's not from teething after all. Ugh. But, school is in session and we've been around a lot of kids, so it's not surprising she is sick. I just hate it when my girl is sick. We did a lot of cuddling and nursing today...she was Velcro baby at her finest!

Here's to a good night's sleep and a MUCH better tomorrow.

16 Months

2010-08-16T07:53:00.000-07:00

I can hardly believe my little love is already 16 months old. Amazing!

Faith, what are you up to these days?

* You are 29.5 inches tall

* You weigh just over 18 pounds

* You are wearing mostly 12 month size clothing, though you can still fit in some 6-9 month size

* You have figured out how to climb up onto the coffee table (!)

* You are taking steps on your own, just a couple at a time

* You are signing more these days and understanding even more than you sign

* You got your first tooth! A molar on the upper right side...and it looks like more teeth are coming soon!

You are developing at the level of a 12-13 month old, according to our therapist. I love to watch you take your little steps. I love to watch you cuddle your baby dolls and give them open mouth kisses. I love to watch you bear crawl your way around the house at full speed. I love watching you look up to your brothers and sister with delight in your little almond eyes.

Faith, you are a wonderful blessing...full of happiness and joy! You are a delight to wake up to each morning and fall asleep with each night, and each moment in between is even better!

I love you to the moon and back my little girl!

It's Buddy Walk Time!

2010-08-15T16:57:00.000-07:00

Will YOU walk for Faith?

under the name "TeamFaithJourney"...

If you can't walk with us, please consider making a donation to help Faith and others with Down syndrome in our community.

Thank you for your support!!

The Faces of Faith

2010-08-13T18:04:00.000-07:00

Since I am utterly too tired from ~~partying while the kids are in school~~ hauling the kids to school and back I will just post some pictures...

Um, could she be ANY cuter???

Look! It's my LONG tongue!

She has started making this face ALL the time...not sure what that is about.

Ta-da!

Yup...that face again. She is super shocked about something!

All worn out from all those faces...

Sometimes I Forget

2010-08-03T20:36:00.000-07:00

Honestly. Sometimes I truly forget that Faith has Down syndrome. Quite often, actually. I'm jolted back to reality of it when someone at the park asks if she has Down syndrome, or when a comment is made about how ' small she is for her age', or when a doc that we've not seen before asks if she has any 'syndromes'.

Oh yeah, she does. She has Down syndrome.

Now though, when I get 'jolted' back to the reality that I have a child with Down syndrome, I am not horrified. I am not sad. I don't think about the 'what if's' anymore. Instead, I am thankful. Thankful that I have such an easy, fun loving and beautiful child...that just happens to have a little bit extra.

I adore when Faith smiles and her little almond eyes wrinkle up....

How could I not be enchanted by her?

She sparkles.

She shines.

Pure perfection in her Mama's eyes!

And Then He Called Me Mama

2010-07-25T06:56:00.000-07:00

Today marks my first born child's 14th birthday. Oh. my. goodness. Why is it my children keep getting older but I stay the same youthful me? (HA!)

Elijah Jacob...I love you. Even though we butt heads often and can argue til the cows come home, I love you. You will always be tucked inside my heart. I am proud to be your mom.

Happy birthday sweet boy!

Counting Down--WARNING: Graphic pictures below

2010-07-24T12:16:00.000-07:00

11 days until school starts. Eleven! Seriously, I am so ~~giddy I might just pee my pants~~ ready. I am done with the endless days of bickering, and the complaints of "Moooom, I'm bored"! Enough already.

Honestly though, it has been a pretty good summer, especially when I think back to last summer when I was stuck in a major depression and thought that my life was over because of Faith's Down syndrome diagnosis. I couldn't even begin to see the light at the end of the tunnel. Nor could I see the joy that was to come. So, yes, this has been a delightful summer, to say the least!

That said, I am still ready for school to start. I mean, I'm not crazy. Or maybe I am. Whatever.

Annnnyway, moving on...

Last weekend, I had enough excitement to last me a lifetime. Okay, so it was more fear and anxiety than excitement, but enough all the same. At about 8:30pm, Caleb came bursting through the front door yelling that Josh was hurt. Well, truth be told, somebody seems to always be getting hurt around here, so my mom-radar didn't exactly go crazy...until, Caleb mentioned the words head, passed out, and blood. THAT sent me running down the street with no shoes and no bra. Thankfully, I at least had clothes on.

Hubby and I finally got to Josh as he was being held up by a couple of other kids. He had blood running down his face and he looked pretty bad. Confused and a little tilted to the side. I tried to decipher what had happened through the chattering of excited little voices...but all I got out of it was that Josh was hit in the head somehow by a bike.

We got Josh home and into the bathroom to take a look...

Needless to say, I loaded Josh up in the car and off we went to the ER. On the way there, he was very dazed and shaking like a leaf. After taking one look at his head, Josh was ushered back to a room rather quickly.

The nurse came in, assessed Josh's wound, cleaned him up and shortly after, the doctor arrived.

The doctor, Dr. Maul ( I did think that name was kinda funny at the time) said that Josh would need to have quite a few staples in his head to close the wound, but he would need a CT scan first to rule out any serious injury to his brain, as if the jagged hole in his head wasn't enough.

Here he is just getting ready to go into the CT machine...he was so scared!

This was all I got to see of the CT...so I sat there worrying myself sick for 2 whole minutes.

After returning from the CT room, things started happening in a bit of a frenzy. Dr. Maul came in, sat down and told me that Josh's CT scan showed that he had a linear fracture of his skull and that he also had a brain bleed, called a subdural hematoma. With that, the room started spinning and I was speechless. The doc said that Josh would have to be admitted to the hospital, but that he would first have to be transferred to a trauma hospital and be admitted into the Pediatric Intensive Care Unit under the care of a pediatric neurosurgeon.

All I could do was hold Josh's hand in mine, and place the other hand over his heart, which was beating so quickly I could feel it. I looked Dr. Maul directly in the eye and practically begged him to tell me that Josh was going to be okay. He told me that yes, Josh would be okay, but that he had a significant closed head trauma and had to be monitored closely for any changes that might occur.

Be still my heart. I was so scared. Scared for my boy, but I kept that fear under wraps and kept the air light by joking with Josh and laughing about the doctor saying that Josh had broken his "brain bucket".

Anyway, after the news was delivered, the doctor said that he had originally wanted to staple Josh's wound, but in light of his fracture and that he would need another CT scan in the morning, he had to just suture the wound.

Dr. Maul did an awesome job, don't you think?

So, now that Josh's head is all pieced back together, off we go in the ambulance.

Not too much happened once we were settled into the PICU. Josh's nurse did very frequent 'neuro checks' to make sure he was doing okay.

Funny thing was, I didn't even notice that they didn't change him out of his bloody clothes until the next morning. Once they got him into bed, he wasn't allowed to move much.

It was a long night. Neither one of us slept a whole lot. I was plagued with worry. Josh was kept up by the frequent checks and some anxiety, I'm sure. Not to mention that he was taken down to CT at 4:30 am!

I did a lot of clock watching...

Thankfully though, a sweet surprise came to cheer Josh up!

By the late afternoon, the neurosurgeon came in and said that Josh's second CT scan looked the same as the first, so he could go home. Yes, there was a fracture, but the brain bleed had not gotten any worse and he didn't expect it to. Before he left the room, the doc got right in Josh's face and told him that he MUST wear a helmet ANY TIME he is on wheels. He also said that if Josh were to hit his head again in the next couple of months, it could kill him. Certainly not something I wanted to hear.

Eleven more days. Eleven more days. Eleven more days...

15 Months!

2010-07-16T14:13:00.000-07:00

It seems like just yesterday that I was writing about Faith turning 14 months old...now, here she is 15 months already! And, here I am, behind in blogging. Again. Never fear though, school is right around the corner and I am ~~planning a HUGE party~~ ready for it. These long, dogs days of summer at home with 6 children are just begging to ~~drive me insane~~ be over and done with. I need some "quiet" time.

I may be weird, but I don't mind AT ALL getting up at the crack of dawn to pack lunches and lay out school uniforms. I don't mind making breakfast, finding lost shoes or brushing long locks of blond hair. Yes, it's hectic, loud and chaotic BUT it only lasts an hour or so and then I get to deposit my children safely into the hands of some very special souls. Teachers! I love those blessed souls.

Anyway...only 19 days of summer vacation left, but who's counting?

Okay, here goes : Faith, what are you up to these days?

* You can still fit into a 6-9 month size in clothes, though I have been putting you in a 12 month size too.

* You are in a size 2.5 shoe without your SMO's and a size 3 with them on.

* You are climbing up stairs like a pro...it's getting back down them that is the problem.

* You are cruising along everything--the couch, coffee table, walls...

* You are taking some fledgling steps while holding onto my finger.

* You are saying more and more words and trying to imitate us.

* You are finally clapping!

* Still no teeth :)

You are a joy, as always! I am enjoying every minute with you...I love you sweetheart!

We'll be going to the pediatrician next week for Faith's 15 month well baby visit, so I will have updated stats then. I'm guessing she is roughly 17lbs and maybe 28 inches. Such a peanut!

2010-07-06T18:10:00.000-07:00

Today we celebrated the 12th birthday of my son, Caleb. Caleb came flying into the world at 2:21pm on July 6, 1998. He weighed 7lbs 4oz and was 19" long. It's hard to believe that in just one year we will be ushering in his teen years.

At Caleb's request, I farmed out Eli, Josh and Gracie to friends houses for the night. Caleb had a couple of his friends over for pizza, cake and a sleepover. He also got his very first cell phone. Talk about excitement...and how come his cell phone is nicer than MINE?

Happy 12th birthday Caleb! You're a great kid...I love you!

Happy 4th!

2010-07-04T20:23:00.000-07:00

For 16 years now, the 4th of July has meant more than just fireworks and hot dogs on the grill. July 4, 1994 is the day my husband and I were married and became a family. It's hard to believe that 16 years and 6 children later...

I'll be the first to admit that our marriage is on pretty rocky ground. Life is tough. Life with kids is tough. Life with a bipolar kid is tough. Life with a kid with special needs is sometimes tough as well. It all takes it's toll, I suppose. I'm not sure what keeps me hanging on, but even on the days when I am hanging on by a thread, I keep chugging along.

Anyway, moving on...

I have enjoyed the reprieve from doctor appointments lately. I actually don't think I have had Faith into the doctor since her cardiology appointment. ( I could be wrong about that though, but I don't think so!) That being said, after this next week, the dizzying pace will begin again with another onslaught of appointments.

A visit to the eye doctor to schedule a tear duct probe surgery, a 15 month well baby visit, to include labs to check her blood counts and thyroid, a visit to the ENT for a hearing test...pair that with twice a week therapies and this girls calendar is full! However, I am SO very thankful that we are not having 2-3 visits a week to the Oncology/Hematology clinic for blood draws and injections of Neupogen to bring her neutrophil count up. Nor are we in the hospital on O2. My view on a "normal" life has really been put into perspective with the challenges of raising a child with special needs. Even so, I wouldn't change my sweet baby girl for the world.

Mama loves you baby girl, barbecue sauce covered face and corn in your teeth (if you had any teeth!) and all!

From one special girl to another...

2010-07-03T15:19:00.000-07:00

   Get well soon Ella!
   Love,
   Faith

* Click on Ella's button on my sidebar for her story...

She's a Rockstar

2010-07-02T15:11:00.000-07:00

Her future is so bright...

She has to wear shades.

So full of love and life...she's going to do great things!

She's a rockstar, you know.

Having this little girl in my life is a lesson of something that is a whole lot bigger than me. A lesson that I am excited to be a part of. A lesson that I plan to excel at.

Faith's sweet soul just makes me drink her in. She is beyond anything I could have ever asked for or imagined. She gives me so much joy it makes me weak in the knees!

I love you my little rockstar.

Wordless Wednesday, Sorta

2010-06-30T18:47:00.000-07:00

Faith "yelling" so she can go downstairs :)

(Be sure to pause the music player so you can hear her!)

Summer Time Fun

2010-06-29T12:49:00.000-07:00

There's nothing like some water fun when it's stinkin' hot outside...

Even if the water is a little cold.

Okay, I'm outta here...my brother wants to play!

Here comes Sam!

Time to do it again!

Gracie's turn!

Here comes Aunt Teri!

Whew! That was COLD!

A little summer time toes...

A little sidewalk chalk...

And this is what happens when you party at Aunt Teri's house...

Nap time is VERY good!

2010-06-27T16:41:00.000-07:00

I am rather weary these days. Summer vacation must really be getting to me. 6 kids. 24 hours a day. Every day. You do the math.

When I went to make Faith's bottle today, I realized just how weary I am when instead of pouring this into her bottle...

I poured this instead...

Ooops. My bad.

I Love Me Some Dog!

2010-06-26T11:14:00.000-07:00

Yes, I do know that title wasn't proper grammar. I'm only saying that just so you know that I know. Okay?

Faith has a love for anything fluffy and furry...especially dogs. We have a toy schnauzer, Abbey, that is terrified of Faith, but Faith LOVES to go after Abbey pointing and saying "dawg dawg" (if you could only hear that in her 14 month old cute voice)

While at a friends house, she was totally taken by her two dogs, this big one, especially.

The look on her face is somewhere in between giddy and weirded out, I think. She must have been thinking that this was no Abbey dawg!

Titan, the dog, was totally unimpressed at first...

Then, he decided that Faith tasted pretty darn good, and decided to have a few hundred licks...it must have been all those Gold Fish crackers she'd been eating.

Who could resist kissing this sweet babe anyway? Who cares if the kisser is furry!

2010-06-19T15:53:00.000-07:00

I'm thinkin' it's going to be a night with early bedtimes for all, except me, of course. I am not above putting my children to bed early so I can sit in front of the TV watching mindless sitcoms with my bowl of chocolate ice cream, or so I can play endless games of Farkle or mess around on Facebook making fun of all of Farmville.

Believe me, there are days when it is necessary for the sake of my own sanity. Cheap thrills, right? With long summer days in full swing, some sanity is a commodity for sure.

Anyway, before I start whining about what hellions my children are being and how I am already ready for the familiar routine of the school year...

On Thursday, we went up to Littleton to a pool/water park called Pirate's Cove. We had such an awesome time splashing around in the cool water and kicking our feet in the Lazy River. I even got up enough courage to go down a water slide. Twice!

Sami, Faith, Me, Gracie and Syd hanging out by the pool

My sweet Sam all cozied up in his swim robe

Faith wondering just who is in there anyway??

Me, getting a little dizzy blowing up the swim ring...

Peek a boo!

Happy happy girl!

14 Months Old!

2010-06-16T16:10:00.000-07:00

It's way beyond me how this little cherub can be 14 months old already.

It's been a long time since I've done a "what are you up to these days" post...here goes!

Faith, what are you up to these days?

* You are wearing mostly size 6-9 months clothing

* You wear a loose size 3 diaper

* You can almost fit into a size 2 shoe

* You weigh about 16 and a half pounds

* You are about 27.75 inches tall (though that may be a bit generous)

* You are getting around ALL over the place...crawling as fast as a race horse, cruising the coffee table and pushing your little baby stroller

* You are eating mostly table food and stage 3 baby food

* You love whole milk, though it has to be thickened to nectar consistency as you aspirate sometimes

* You still have no teeth!

* You sleep through most nights, but have been waking at 3am lately for a 'snack'

* You are still nursing on demand

* You take between 2-3 naps a day

* You are saying "mama", "dada", "muh muh" (for more) and "dug" for dog.

* You know the signs for milk, eat and more

* You still take reflux meds 3 times a day

* You break out into dancing every time you hear music

and most importantly, you are happy, healthy and thriving.

We love you Faith!

2010-06-15T20:40:00.000-07:00

I cannot, for the life of me, get this girl to not taste the sand every time she gets in the sandbox. I don't know what it is about the moist, gritty sand, but she sure LOVES to eat it! Come to think of it, she likes to eat dog food too.

It's okay though, just a phase, I'm sure! If she were my first child, I might be a bit more inclined to freak out about something like sand eating, but since she is my sixth child...not so much. I figure there are worse things to eat than sand, right? My other kids have proven that--especially the son ( I won't name names here to protect the innocent) that bent down in the middle of Target, picked up a chewed piece of gum that was stuck to the floor and popped it in his mouth. Same kid also licked the shelf on the check stand at Wal-Mart. He's still living. Still healthy.

I figure the old saying should hold : "God made dirt, so a little won't hurt"

Dare I Say It? WARNING: Vent Ahead

2010-06-14T05:49:00.000-07:00

I'm BORED!

I'm sure you're wondering just how I can be bored being home with 6 kids on summer break? I guess I have just fallen into a rut.

Get up, make the coffee, silently pray that the kids don't get up yet...drink the coffee, check email and Facebook...and then, the chaos begins. Still, how can I be bored in the midst of chaos? It's because just about every day is the same, I suppose.

I feel like all I do is clean up sticky messes, referee fights and squabbles, do laundry, pick up toys, ...basically run around in circles trying to stay on top of things.

Honestly, it's boring.

I try to plan things to do...things close to home and mostly free, but by the time it's all said and done, I am worn out by the bickering whining children, I'd just rather stay home, which only perpetuates the cycle of whining and squabbling children. I just can't win for nuthin'.

I know, now I'm whining.

Only 53 more days till school starts. Not that I'm counting. Nope, not me.

Time to make the coffee...

2010-06-12T12:19:00.001-07:00

I love this girl.

Need I say more?

Sand, Glorious Sand

2010-06-08T20:55:00.000-07:00

Being a Colorado girl all my life, I've had only a few chances to sink my toes into sand at the beach. Well, when the weather finally started behaving like summer, I got the itch to sink my toes into some sand. Since I am not THAT crazy we are too far from the beach, the National Sand Dunes had to do.

The view approaching the Sand Dunes

Granted, the car ride there was very long, and the ride home seemed even longer, great memories were made and fun was had by all.

Caleb enjoyed the ride, trying to imagine what it would be like. He carried his trusty bottle of hand sanitizer with him the whole time. What would we do with out him taking care of our sanitation?

I loved writing Faith's name in the sand near the river. I tried to get her to sit for a picture, but man, that girl can move!

See? She is protesting me sitting her down again.

To keep her from crawling off, we decided to just bury her. (kidding!)

She was pretty interested in the cool, wet sand between her little toes.

Seems Gracie was enjoying herself as well. Her smile tells it all.

After all the fun Sam saw Faith having being buried, he wanted his turn too.

I don't know how the kid could expand his lungs enough to breathe, but he sure didn't want us to dig him out.

Josh was in his element...he's a total boy, active and daring. Ready to use his sled to float down the river.

The teen got a little mouthy, so we decided to bury him too.

Yup, that took care of it.

Even Abbey came along for the fun. If only she hadn't been beside herself with anxiety over everything and everyone, I'm sure she would have had a great time.

We had a great time, but I am not racing out the door to go on a road trip again any time soon... but I am glad that summer is here!

Wordless Wednesday

2010-06-02T11:25:00.000-07:00

Here Comes Trouble!

She has an affinity for kibbles and bits!

2010-05-29T19:27:00.000-07:00

It's hard to believe there was a time, not too long ago, that I thought that Faith being "different" would be forefront in my mind at all times.

Now, sometimes I forget that she is "different".

Imagine that.

I don't know what I was thinking.

"Different" is good.

She plays.

She cries.

She eats.

She sleeps.

She laughs.

See?

Being "different" is not so different after all.

Getting to the Heart of the Matter

2010-05-28T08:59:00.000-07:00

Faith had her check up at the Pediatric Cardiologist yesterday. She had an EKG and an echo cardiogram. The doctor wanted to see if the PDA (hole in her heart) had closed up or at least gotten smaller. The hole indeed did get smaller...it is now the size of the diameter of a strand of hair! Wow! The doctor said that it is now "insignificant" and would not need to be repaired. But, the next words out of his mouth took me bit to process. He said that even though the PDA got smaller, in doing so, it "unmasked" another problem.

It's called Coarctation of the Aorta. Basically, it is a narrowing of the aortic arterial arch...the side that pumps blood to the body. The cardiologist drew me a picture of the area of her heart where the blood flow is now "turbulent". The doctor said that at this point it is very mild, but it is something that can progress, sometimes quickly, so Faith will return for another echo in a year or sooner if she becomes symptomatic. He also said her risk of infection in that area of her heart is increased, so if she has to have any IV lines placed for any reason, she would need some antibiotics to prevent bacteria from entering her heart.

I was filled with anxiety through the explanation from the doctor...and I found myself swallowing hard and holding back tears. But, Faith has been a fighter from the minute she was born. Her will to thrive is unmatched and I know that will shine through in light of this new diagnosis as well.

Besides, her heart is tightly entwined with mine...we'll get through this together.

Peace Out!

2010-05-26T13:53:00.000-07:00

I can't believe another school year has come to an end, seeming so abruptly. I now have an 8th grader, a 6th grader, a 4th grader and a 2nd grader. My babies are growing up on me! And really...how can I be old enough to have a son that is one year away from High School?? Say it isn't so!

Someone said to me today that they were ready enough for summer as much as I WASN'T...I said to him, you must REALLY be ready for summer then! Don't get me wrong, I love to sleep in past o'dark thirty as much as the next person. I also like not having to rush around in the morning frantically trying to find lost shoes and misplaced reading logs. I really like not having to nag the kids to do their homework in the evenings too. Buuuuuut, I am am not a fan of summer vacation...mostly because I am not a fan of children who are bored and fighting. That about sums it up.

All of that being said, I am going to do all I can to have a happy, memorable summer. The kids deserve that right?

Of course they do!

So, according to Gracie... Peace out school, hello summer!

Oh, How I Love Those Almond Eyes

2010-05-25T10:10:00.000-07:00

Aren't they beautiful?

Bring it on!

2010-05-22T20:16:00.000-07:00

I'm ready for summer...but only because summer usually brings a reprieve from sickness at our house. The last year has brought one thing after another. Faith has endured many hospitalizations, Ph probes, and many visits to the oncology/hematology clinic, GI doc and cardiologist. We've had the swine flu, the stomach flu, ear infections, croup, an emergency gallbladder removal surgery, an allergic reaction to pain medicine that put me in the ICU and RSV.

Enough already!

Gracie was just in the hospital this past week with what the doctor believed was another bout of pylonephritis (kidney infection). She spiked a 104.5* fever and her symptoms were reminiscent of her previous kidney infections. I took her into the doctor as she wasn't getting better and had all but stopped eating and drinking. Her breath smelled like she drank a bottle of nail polish remover. Low and behold, her urine test showed ketones, which indicate dehydration. So, we were shipped off to the pediatrics floor of the hospital that has become like a second home to us this past year.

Being pumped full of antibiotics and IV fluids

So tired...

Ouchie! She handled getting the IV like a trooper.

Faith camped out with us too!

A very special visitor...Nana!

Always time for a kiss

Gracie had labs drawn when she was first admitted to the hospital. The next day, the pediatrician came in to see her and told me that Gracie's blood test showed that she was neutropenic. (low neutrophil count--a normal count is above 2,500--Gracie's was 300) as well as having a very low white blood count. Weird thing is, Faith is neutropenic too. The doctor said she was scratching her head trying to figure out what was going on with Gracie. Her urine cultures grew nothing, so the kidney infection diagnosis went out with the wind. After some pondering on the doctors part, it is thought that maybe the neutropenia is a familial thing. Something genetic. So, Gracie will have her labs done again in two weeks. If her counts have not risen to normal, she'll be going to see Faith's hematologist. Be still my heart...

But, I did tell the doctor, that all of this MUST be their father's DNA.

Anyway, Gracie came home on Friday. Friday night at 10:15, Faith started vomiting all over her crib. She continued to vomit until almost 5am. Lordy, the kid was wiped out. She was so pale and tired. She even stopped opening her eyes when she would vomit. Pretty much slept right through it. She would rouse a bit, vomit, then it was right back to a deep sleep. I worried all night that we would be heading off to the hospital. Again. Thankfully, Faith held her own and drank Pedialyte like a champ and perked up by dinner time.

If anyone else comes down with it, I may just run for the hills.

So come on summer....bring it on!

Ride 'em cowgirl!

2010-05-17T20:26:00.000-07:00

Sitting pretty on my pink horse...

Okay, I think I'm all done...

Hmmmm, now how did I DO that, anyway?

Let me just have a taste of this pretty saddle...

I did it! I got off all by myself!

This girl amazes me, each and EVERY day.

Stand Up Proud!

2010-05-09T19:49:00.000-07:00

Faith standing up all by her little self!

Better Late Than Never

2010-04-16T13:41:00.000-07:00

I am SUCH a blogger drop out. Now, I have moved blogs, just to start fresh. I still have my "old" blog since it is a scrapbook of my life and many memories were transcribed there, but this is the "new" place to be.

Amazingly, it's been a year since Faith's birth. I have passed through denial and grief to acceptance and JOY! When I think back to those dark first days and months, it seems almost silly to me now that I was in such a place. I wish I had known then that everything was going to be okay. MORE than okay. Faith has brought so much to me, my husband, our other children and many others in our lives.

Her sparkling eyes and her contagious smile capture hearts at first glance.

Anyway, stay tuned...the best is yet to come.

And the Journey Begins...

2009-04-16T14:11:00.000-07:00

I was elated at the birth of Faith. Her birth was pretty easy all things considering. Painful yes, but over so fast I didn't have much time to think about the pain.

My arms instinctively reached down to pull my newborn to my chest the moment she was born. My wonderful OB made no hesitation in obliging my desire, and allowed me to gather my baby up in my trembling arms immediately. I heard the doctor giving my husband instructions in how to cut the umbilical cord. I drank in my beautiful little baby girl's sweet spirit and then handed her over to the nurse practitioner to place her in the warmer.

Across the room, I heard her strong and beautiful cries floating through the air. Sweet, sweet music to my ears. All was right in my world. My baby girl was here.

The Nurse Practitioner swaddles my baby up tightly in a pink and blue striped hospital blanket and walks over to my bed. "I need to talk to you about your baby" she says. "I am seeing signs that she has Down Syndrome". I hear myself audibly gasp, my heartbeat quickening. She begins to point out the 'characteristics' of Down Syndrome that she sees in my baby. Almond shaped eyes. A wide space between her first and second toes. Small ears. Deep creases on both palms.

"What?" I cry. "I am not that old, how could that happen?" I didn't really hear what was being said. Shock took over my senses, I think. I look at my baby first. She looks perfect to me. But, when I look up through my tear-rimmed eyes in an almost foggy room, I see the concerned faces of 2 nurses, my OB, my Mom, my husband and my friend, Teri. "Is my baby going to die"? I ask, not really wanting to hear the answer. "No sweetie. Your baby looks healthy" explains the Nurse Practitioner. "But, we need to take her to the nursery to make sure she's okay".

I am numb.

I hear someone begin to sob. Heart wrenching sobs. And then I realize I am the one sobbing. I kiss my baby, feeling like she is a stranger, and tell her that I love her. Always and forever. No matter what. And I do love her...so much it hurts.

And here in birthing room 40, begins a whirlwind of emotions. Scary and painful emotions. I am flooded with grief even though I don't quite yet understand why...