Monday, November 15, 2010

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.


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 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:

Tuesday, October 26, 2010

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!

Saturday, September 11, 2010

Catching Up

I'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!


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!

Monday, August 23, 2010

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.

Saturday, August 21, 2010

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!

Friday, August 20, 2010

Uh Oh....Here Comes Trouble!

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!

Tuesday, August 17, 2010

Icky Sicky

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, and 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.

Monday, August 16, 2010

16 Months

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!

Sunday, August 15, 2010

It's Buddy Walk Time!

Will YOU walk for Faith?

Register here:      
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!!

Friday, August 13, 2010

The Faces of Faith

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.


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

All worn out from all those faces...

Tuesday, August 3, 2010

Sometimes I Forget

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!

Sunday, July 25, 2010

And Then He Called Me Mama

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!

Saturday, July 24, 2010

Counting Down--WARNING: Graphic pictures below

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 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...