I'm Three

I'm Three

Hebrews 11:1

"Now faith is the substance of things hoped for, the evidence of things not seen." Hebrews 11:1

Wednesday, July 27, 2011

FIRST ROAD TRIP....I didn't like it

I am starting to get visitors and I really like it!!  (Thank goodness my mom is loosening up a bit and letting people come see me.)  I was able to see my awesome Grandma and my daddy's sister & family.

Also, a few days ago, my other auntie and cousins came for a visit and I fell in love with them...especially my auntie..(she has dark hair and eyes and I really like just looking at her..I guess you could say that we're pretty "bonded" and I like to "snuggle" with her - - - I hope my Uncle doesn't mind too much.. (ha ha!)

I took my first "road trip" since coming home from the hospital...

I did NOT like the car seat...I did not like it...Not one little bit. 

I stayed in my first hotel...I did not like it...Not one little bit.

I went for my very first hike in the mountains AND...I COULDN'T STAND IT, NOT ONE LITTLE BIT.

So...I think it would be safe to say that "I just don't travel well yet" and leave it at that.  (Mommy & Daddy were GLAD BEYOND GLAD to get home & let me out of that seat.  I like to "arch" backwards and that seat didn't let me do that.)

But...as Johann Wolfgang Van Goethe says:

"I find the great thing in this world is, not so much where we stand, as in what direction we are moving." 

As part of the Foster Family...I will continue to move "forward" - trying new things (even if I don't like it..not one little bit.)

(I think my mommy has read WAAAY to much Dr. Seuss lately, don't you agree?)   

STILL UNIQUE AND FULL OF SURPRISES...

So...remember that organization I told you about a few weeks ago that my Physical Therapist recommended to my mommy?  (They are called "UNIQUE" and they are out of the United Kingdom.)

Well, mommy wrote to them and she heard back...It's a pretty cool organization, started for people who are diagnosed with rare chromosome situations.  The woman who contacted my mommy's name is Beverly and she is awesome!!  She wrote my mom a nice letter and sent her a package all the way from the UNITED KINGDOM for "F--R--E--E."  This lady is a super cool cat in my book!!

When my mom first got on the site a few weeks ago, she thought she may have found someone "like me." 

As it turns out...the other "person" that my mom thought was like me actually has different pieces of their chromosome #9/#14 missing/duplicated...

So..long story short....I'm still "Unique" (PERFECT name for the organization) - huh?

BUT...That's okay...because I am who I am...Unique and always full of surprises too!!

HOWEVER...The cool part is that she did send my mommy names and address' of several parents that have children with #9/#14 situations and my mommy is so excited!! 

She has decided to "write" to these parents and WE'RE going to make some new friends for me (and her too...)  These new friends are ALL OVER THE WORLD and it is so exciting!!  She loves to meet new friends who have overcome trials - straight to triumph...they inspire us to keep ...moving forward!!

We are sure meeting some awesome people along our journey..what a blessing!!

Love to you all....

PS....If you ever need to get a hold of Beverly at "Unique" - you can find her at:  http://www.rarechromo.org/html/home.asp

STRUCTURE OF MY EYES are NORMAL!!

Hi special friends!

I visited the eye doctor a few days ago and guess what?

THE STRUCTURE OF MY EYES ARE NORMAL!!

I did great!!  I tracked the light he wanted me to track "back" and "forth" and he was impressed!!

He told my parents that he feels my "eye" development is a bit delayed and their concerns are valid, but he thinks that it is because "I" am a bit delayed "overall"...

BUT...everything "looks" like it should structurally for me to see perfectly normal as time goes on.

This is totally awesome news!!

The next step he would recommend would be an in depth eye exam, but that would mean putting me back under general anesthetic & my parents are opting against that for now. 

Time is what I need...Just time...

I am making so much improvement that unless it is absolutely necessary, we are saying "no" to any invasive testing....and boy am I GLAD!!

So thankful for parents who say "yes" when necessary, and "no" when not...

My parents are learning so much...medically, physically & spiritually too...(understatement of the year..)

Thursday, July 7, 2011

13 POUNDS - 3 OZ

Well..it's official..

I AM BACK ON THE GROWTH CHARTS!!

Yesterday, my big brother Zachary & mommy came with me to visit my Doctor and he is SO impressed with me because at our last visit, I wasn't even on the chart..

I weigh 13 pounds and 3 ounces...WAY bigger than I was at 3 pounds 14 ounces at birth.

My head has grown too and we all know what that means...brain growth!!

My parents are so excited!!

I got my 6 month shots - and of course I cried (secretly, so did my mommy.  After all the needles I have had, she has a hard time watching me have any pain....but I'm tough.)

Well...today (day after my shots) I feel under the weather.  I'm a little warm & feeling pretty cranky, so out comes the Tylenol. 

My physical therapist came over today but I didn't feel very well, so I didn't perform all my stunts for her (tummy time, etc..)

I just need to sleep this off & then I'll be back to my happy self again.

Good night friends...

Tuesday, July 5, 2011

IT'S WHAT YOU MAKE OF YOUR JOURNEY...

Happy Tuesday!!

My Physical Therapist reccomended a website to my mommy...www.rarechromo.org

This website has provided my mommy with some great information and even though there is no one "registered" who is exactly like "me" - she is grateful for the information...

Here is a fun story that they sent her..

Celebrating Holland, I’m home
Cathy Anthony writes:

Many readers will, at some time, have read "Welcome to Holland" by Emily Pearl Kingsley, who, as the founder of the USA Downs Syndrome Association, likened having a child with special needs to going on holiday and arriving in a different country to the
one you had planned to visit. Here Cathy Anthony, a parent, advocate and presently the executive director of the Family Support Institute in Vancouver, offers her follow-up to the original.

" I have been in Holland for over a decade now and it has become home.

I have had time to catch my breath, to settle and adjust, to accept something different than I'd planned.

I reflect back on when I first landed in Holland. I remember clearly my shock, my fear, my anger, and the pain and uncertainty.

In those first few years I tried to get back to Italy, my planned destination, but Holland was where I was to stay.

Today, I can say how far I have come on this unexpected journey. I have learned so much more, but this too, has been a journey of time. I worked hard; I bought new guidebooks; I learned a new language, and I slowly found my way around this new land. I have met others whose plans changed, like mine, and who could share my experience. We supported one another and some have become very special friends. Some of these fellow travellers had been in Holland longer than I and were seasoned guides, assisting me along the way. Many encouraged me; many taught me to open my eyes to the wonder and gifts to behold in this new land. I discovered a community of caring - Holland wasn't so bad! 

I think that Holland is used to wayward travellers like me and grew to become a land of
hospitality, reaching out to welcome, assist and support newcomers.

Over the years, I have wondered what life would have been like if I had landed in Italy as planned. Would life have been easier? Would it have been as rewarding? Would I have learned some of the important lessons I hold today?  Sure, this journey has been more challenging, and at times, I would (and still do) stomp my feet and cry out in frustration and protest. Yes, Holland is slower paced than Italy and less flashy than Italy, but this too has been an unexpected gift. I have learned to slow down in ways too, and look closer at things, with a new appreciation for the remarkable beauty of Holland with its tulips, windmills and Rembrandts. I have come to love Holland and call it home. 

I have become a world traveller and discovered that it doesn't matter where you land; what is more important is what you make of your journey and how you see and enjoy the very special, the very lovely things that Holland, or any land, has to offer. Yes, over a decade ago I landed in a place I hadn't planned yet I am thankful, for this destination has been richer than I could have imagined!

I'M 7 MONTHS OLD!!

Happy Independence Day Friends!!

How wonderful it is to be alive and living in such a beautiful country...

I am 7 months old...

WOW!!  How time does fly...

AND..it was my "first" outing with my whole family..(I have been to the doctor and hospital several times before, but my parents don't count that because I am "covered" in my car seat and we are "in" and "out" as fast as we can...)

My mommy was very nervous, but I did great!!

We went to my Uncle and Auntie's home for a BBQ, cake for her birthday and of course..fireworks..

Let's just say that I am not a fan of fireworks...but is any baby really a "fan" of fireworks?  I don't think so...

So, I spent the evening "inside" with my mommy, Auntie, brother and cousin..just "good ole' fashioned - - - visiting."

I slept REALLY well last night and I slept a TON today too...I think my "outing" wore me out..

My mommy had a little bit of a scare tonight..

I was laying on my back on the floor and all of a sudden I started to "Squirm" around I was obviously struggling to breathe...no air was coming "in" or "out" of me and I was moving all around...

Thank goodness my mommy was sitting right there and she grabbed me up so fast and turned me on my side...

I started to gasp for air and cry..

It appeared that I was having a hard time "managing" my saliva and this is what made me struggle..

It was pretty scary for my mommy...sure made her heart race, but...as always,    I am A-OKAY!

She thinks that maybe I'm in the beginning stages of "teething" and I have "extra" saliva that I am not used to..

The binky helps me manage this saliva and suck it down so it doesn't "pool" around in my mouth and throat..

Thank goodness for the binky...

Thank you for all of your support..you guys are super good to my family and to me and I appreciate you!!

Monday, July 4, 2011

TUMMY TIME....FINALLY.....A SUCCESS!!

I am SO excited!!

A good friend of my mommy's made me my VERY OWN g-tube protector for tummy time..

It has a hole in the front and it velcro's in the back...

I can now be on my tummy and my tube isn't being "mashed" into me..

I love this...it is hard work trying to hold this head up, but I am so excited to have be able to see the world from a different view without hurting anymore..

She owns a Quilt Shop in Hurricane, Utah.

Her saying is:  "Friends are like fabric: you can never have enough."

This is SO TRUE!!

I am so blessed to have such good, caring people who always know exactly what I need..

THANK YOU MOMMY'S FRIEND!!

THANK YOU MOMMY'S FRIEND!!

http://www.youtube.com/watch?v=MOMUEYmBn6M

Friday, July 1, 2011

ANGEL UNAWARE - WRITTEN BY DALE EVANS ROGERS

Today is a great day!!

I have been fighting "something" off the past new days, but I am feeling better...
My mommy's Auntie sent her a very special book called:  Angel Unaware.

My mommy read this book and related to it a lot.  (It's a pretty easy and fast read...you should check it out..)

One thing that stood out to my mommy in this book was how overly protective and paranoid she has been with me since I was born and more-so now that I am home.

I'm very smart & I can sense this. 

I think my mommy knows that this is not healthy for me as a long-term practice & she realizes that this "over-protectiveness" attitude and frame of mind will hold me back.....

She is going to try really hard to "let go" a little and not be so "on guard" with me all day, every day.

I am doing so much better, and my mommy just needs to trust that I'm not going anywhere, but "forward" with huge progress..

This was a good book for my Auntie to send my mommy...Maybe my Auntie was really the Angel Unaware, right?

Thank you Auntie Hazel!!  My mommy needed to read this book and you sent it at the perfect time!!  As mommy says...everything happens as it should in EXACTLY the right time...

Life's little lessons...

HAPPY BABY

After all that g-tube care, I am a happy baby!

http://www.youtube.com/watch?v=Diap9irzBKk