Tuesday, September 25, 2012

Whisperings of his soul.

 AS I sit here not doing the thousand things I NEED to do before I go get Griffen, I decided to edit pics from the weekend.

The more I looked at these pictures the more I got teary eyed.
How can I possibly sit here feeling sorry for myself
for the craziness of the past week, month, summer.

My boy, you know the one with the 'disability'
doesn't feel sorry for himself
but accepts the life that he was given
with so much heart and zest for life.

It won't take long to figure out which one Brahm is in the pictures below,
and then I hope you see his 'go get em' personality.
We don't know how long he will get to play
because of his deteriorating joints and chronic pain.
So we let him play for now.


My boy with a heart for sports,
we must weigh the whisperings of his soul
with preserving his body.


You can't put a limit on anything.
 The more you dream, the farther you get. 
Michael Phelps 






Sunday, September 23, 2012

SUnday Snapshot {florabella}

I bit the bullet and had to buy Florabella Colorplay! (they had a coupon on their FB page!!)

I have held off on buying much of everything for a long time . . . cuz you know 3 adoptions in 1 year and so many friends also adopting and in need.

BUT, I also know my soul and I jsut don't have the time to fiddle with photographs like I did before.

So I purchased, and while I cuddled with Fei as she recuperated I went through my file of most favorite but never edited pics.

I came across the one below taken when Brahm got a black eye!

But truly it speaks to me how he takes on the world.  Despite being the size of a 2-3 year old (he has dwarfism & is 6) he played lacrosse against kids up to 9 years old today.  He is an inspiration to everyone watching.  


Photo specifics ~

Besides the fact that his hair and eyes are the SAME color, 
his eyes truly speak to the soul (or maybe just mine!)

Canon 5d
50mm lens*
Florabella Colorplay Recipe ~ 
Perfect color
Organic 58%
Ethereal 5%
Dramarama 65%



Ni Hao Yall

** If you look at his picture, since I used the 50mm lens his focal plane is very shallow.  Because of Brahm's particular type of dwarfism, his head is long from front to back.  You can totally see in this picture how blurred the 'forehead' area is.

Friday, September 21, 2012

Fortune Cookie

FeiFei is HOME!

Apparently she woke up this morning and told Daddy she was going home - it was 6 AM!  The Dr and his entourage came in and she told him the same exact thing.  That princess of ours!  He said after you poopy (making sure all of her spinal nerves were functioning).  She didn't believe him, so the nurse and another Dr told her the same thing.  Then Daddy was smart enough to call me.  He said after we hung up she said she needed down and of she went to the bathroom!

Have I mentioned this girl LOVES food.  They got home around lunch time and we treated her to PF Chang's.  (Yeah, I know what your thinking but she really was doing great!)

I'll tell you about that in a sec but first let me tell you that I jsut LOVE my big kids.  Truly they were all thrilled that she came to pickup (as did Daddy!) By that time she was starting fade so we held her but man were they excited.  Even Brahm came running across the school yard.  Her friends, and teacher also excited!


Our big boy came home from football and pushed past me "Where's Fei"

Luckily, I had my phone in hand!


Brahm sat with her all afternoon and played iPad and squinkies


Friends sent her a special treat ( can you see how she guards her neck)

We are trying to have her take it easy, but truly this is hard when she was raised NOT to be different.

Even when we went outside she was upset that she couldn't.  
Please pray for her heart over the next few days!

Ok and now onto PF Chang's ~ this was my fortune LOL!
Not for a minute do I think that this is NOT a Godwink!



I had totally missed that we had been CABLED!!  I sent it to our agency which was closed already but we should be onto our Article 5 soon!  Never a dull moment around her!

Thank you from the bottom of my heart for your prayers!  We truly stormed heaven with all of the continual prayers AND that is the only reason to explain how both of our kids came home jsut 2 days after MAJOR, MAJOR surgery!


Thursday, September 20, 2012

Fei's surgery

So we are 24 hours post op, and I have to say that although I lacked the complete faith that Fei would make it through the surgery, I knew if she ultimately went to be with Jesus, she was ready . . . and truly can we ask for more as a parent.

The unfortuantely part of our situation is that the 50 mile drive is almost all country, which leaves time for A LOT of thinking . . . AND crying.


So yesterday Fei and I packed up our stuff, and left for Denver.
My sweet smiley girl was actually excited for her trip to the Dr and of course the bag of goodies she spotted.

Although it was a late - squeeze in- cuz it really needs to get done surgery, they actually started right on time!  I have to admit I did apologize to the Dr's for such a long time, and they all showed us such Grace.


Remember how the anesthesiologist was such a Blessing during Cav's surgery.  So in walks in a Texas cowboy (cuz he was too cowboy for Colorado.)  After talking to him, I found out that he not only LOVES doing anesthesia for neurosurgery but actually teaches about this surgery and the special considerations required for children with achondroplasia!  OK God totally had our Fei in his hand!!

Took her to the back and left her with my now favorite cowboy!

My dear friend who drove all the way from the Springs, jsut to sit with me, walked with me to Panera's for a bite.  (cuz they have to get the ok from the surgeon for you to go by car.)

One of the nicer things about such a major surgery is we had our own waiting room.  So we sat and talked and watched the clock.  It took 3 hours to get the arterial line (so they could monitor her blood pressure) in her chunky little self.  Just about the time they called I was pretty close to panic.

The actual surgery only took 1 1/2 - 2 hours.  She did great!!


She went directly form the OR to the ICU.  Shortly after she was settled they came and got me so that I could spend the night by her side holding her hand through the rails.

She really did well, even though they had to wake her EVERY HOUR through the night to check and make sure she was NOT showing symptoms that might indicate neuro issues.




Morning after


So thrilled to eat something!


Daddy and Cav mid morning, and we switched off.  About that time she started waking up more.  Of course we had an issue with Cav whether the change in routine, attention on Fei or a bad day but we left the ICU with him screaming all the way home (until he fell asleep 10 min from home ugh!)

Fei is still doing fabulous, and loving her daddy there catering to her every whim.



Loving my Starlight bear!!


Her doll and blanket from teh kids!!


God has so incredibly blessed our family.  Though we have been through a lot this summer, we have truly been blessed by kids who have a great spirit when it comes to recovery!

Tuesday, September 18, 2012

Pre-op

Ugh I am beat, we had another day in Denver.

But Cav got to show Mr Terry how phenomenal he is doing - again this is so amazing to have a double amputee who still has NOT gone to physical therapy (due to insurance and the fact there is 1 person here that knows what to do with him LOL!)  We see the PT for the first time for an eval on Friday - she is expecting a little boy creeping along with a walker heehee!

On to FeiFei's preop - got stuck in Denver traffic, I was frazzled to say the least, and we were late.

Once we finally made the appt here was what I learned ~

She can have an early breakfast at 7 am YEAH!!
She can have a fun clear drink until we get to the hospital YEAH!
We don't have to be there until 1 pm YEAH!
They think she is as darling as we do YEAH!

Surgery will last 4 hours
They won't have to open up the Dura which will help prevent headaches, nausea etc after
They have a great drug regiment to keep her comfy.

I was surprised she will go directly to the PICU (so glad I am staying the first night)
She will have to stay a mandatory 2 nights but up to 7 (ugh I gotta figure out the other kids schedule)
There are an awful lot of people praying for her!

And a funny - I heard Cav and Fei discussing surgery int eh back of the car.  Cav told her - you go to sleep, get a little owie, but you wake up feeling better.

Of course her only experience with surgery is Cav's so although we have discussed extensively that Fei's legs are good, they work and her surgery is her neck BUT we will be painting her toenails during preop jsut to reassure her.

Thank you for praying, for our sweet girl, for our family.  

Monday, September 17, 2012

Fei's Surgery

AS I sit and wondering about the timing of the events of the previous week, I stand assured that He does have a plan, jsut as assured as I do NOT understand why.

The HIGH of HIGHS watching this little man of ours take his first steps, has been also overshadowed by FeiFei's impending surgery.

This past week, month, summer have been a lot.

I am starting to feel drained, and I can't even get to the cleaning out nesting phase to get ready for little Griffen.  I have put on weight, I can barely finish a phone call (which I can barely answer), the house is a wreck ugh.

Ok enough about my pity party.


So - FeiFei's surgery.
It scares me. . . I know we jsut went through amputation surgery which I was fine with,
but this scares me.

Her surgery consists of removing the extra bone at the base of the skull that is currently compressing her spinal cord.  This bone is removed on either side.  Then from what I understand the first 2 days are critical in preventing swelling.


This is where her brainstem is, so the room for error is minuscule.

Her surgery is this Weds at 3pm MST.

Please will you pray for our sweet little angel.


Sunday, September 16, 2012

Sunday Snapshot - {For I know the plans..}

Jeremiah 29:11

For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future. 



In the craziness of our week, month, and current life,
I totally missed it.

Until today ~
As our Pastor came and asked if Cav could walk up the aisle with him,
and the congregation gave our son a standing ovation (and God of course.)

I looked at the praise card and it hit me

There was the plan, and I almost missed it.

Our boy received his legs on the 12th!

Hello, the 12th. . . how could I have missed it.

Exactly,
9 months
TO
THE
DAY

He became our son 12/12, 
he received his legs 9/12!
Only God could have written this plan,
Only his timing!









And my little man, who cheers his brother 
eventhough it is hard to share the limelight!



Ni Hao Yall

Friday, September 14, 2012

Cav walks!

OK you know my post jsut about an hour ago LOL!

Well, scratch that.

With a little help bribery (cuz who are we kidding) from the chocolate chips he decided to let go!

My biggest boy in the background was 16 mos and we had to bribe him with M&M's LOL!  who says they aren't related LOL!!

Again please forgive my annoying voice and messy kitchen - this was so unexpected . . . and well we all know how much I hat the stupid walker LOL!


Cav update

THanks for all of the emails checking in.  We have (as in I) a bit of a learning curve but all in all Cav is doing great!

I compare it to when your baby is jsut getting ready to walk and you know they can BUT they don't have the confidence to let go.

He has this stupid walker which he will lift up and move while standing on his legs LOL!

I haven't gotten very many pics of him, mainly because I am usually standing next to him making sure he doesn't fall.

Everything he has to relearn (or learn) from how to get in and out of a shopping cart to how to seat.  He is a fast learner and this has more to do with me having to rethink through everything.

Truthfully, this part I was't prepared for.  But then again it's Cav.  He somehow got himself UP the stairs when it was naptime and I was trying to beat dinner into submission the crockpot.  BTW that dinner will be on the table tomorrow LOL!  Naptime is jsut not enough time to make pulled pork LOL!


EVERYONE, and I mean EVERYONE cheers for him - way cool!

We went to the park yesterday and he loved being on the swings.

Note to other parents, um holding your child upside down when he has prosthetics doesn't really work. Yep, pop off one came and I luckily caught him LOL!



I'll get better pics of his legs but they are super cool.  The longer (more metal) is tools on wood and the other one is screws (although it looks like cheetah from far away.)  
Makes a great conversation piece for new friends.  


Tuesday, September 11, 2012

Dawn

a year of paperwork,
9 months of becoming a family,
2 surgeries,
9 weeks,
an ebay wheelchair,
and now a walker,
9 casts,
and tomorrow morning this boys life will change forever.
his dream will come true.


Thank you for your prayers,
your love, and your support ~ 

there were days I didn't think I could do it,
days I wanted to hide under my covers,
but then I would receive a word of encouragement,
a simple note and I took one more step forward,
and now I stand in awe of His grace.

Sunday, September 9, 2012

Sunday Snapshot - {First Steps}

It has been a very busy week but although we have celebrated many firsts and birthdays - Cav's new legs and his very first steps EVER has been the highlight!

Very photo heavy but it was a pretty incredible day!



I think I love this photo the best -
The pure innocence as
 Cav checks out his new leg, 
& first pair of shoes EVER!



Daddy got light up shoes - we thought he MIGHT need an incentive - we were wrong LOL!



Another favorite - waiting!


I can do it!

Momma, you see!


See Momma!


Other side





SO excited he is up!


Stand up straight big guy!





AS you saw in the videos in my last post, I quickly realized the camera needed to be put away and the video used instead - our boy waited his whole life for this, and he was off!


We had to go over to Children's after to x-ray and see our favorite Dr.  Just a slight adjustment needed

BUT Cav was tall enough to play with the busy beads and he was so thrilled with himself!



We still have to learn how to sit and get up!

Ni Hao Yall

Canon 5D - 50 mm lens since all their rooms are dark interior rooms.