Growing

It's amazing what having a home can do for these kids. 

 Cav has grown 2 inches since OCTober, 

My husband had called me WHILE we were in China saying he couldn't get Cav's legs on

my solution was knee hi pantyhose

It was determined that he needed new legs 

I was frazzled from jsut getting home,

I jsut wanted to get through Christmas

I TOTALLY forgot about our DEDUCTIBLE

ugh

ANyhow, after several trips to Denver

a very high deductible

we got

NEW LEGS 

(this is so not how I perceived my life 10 years ago LOL!)

Oops one leg is shorter then the other!

Because Cav has one leg longer than the other - he also has more growth plates in his left leg - so . . . oh yeah it grows faster LOL!  

THey jsut added a little more hardware to his Roboleg to make them equal 

Hmmm and what am I supposed to do with jsut one leg LOL!

So the length on the left leg is the same as before but the socket (red part) is much bigger

THey had to make it shorter because he has some leg/cheek fat roll thing going on

Can you see how much bigger the red one is

THis leg is way bigger I was totally shocked

Also because I swear I am jsut out of it sometimes, 

Cav's shoes were almost completely worn down on the right side ?!?!  

Luckily, Brahm had some that fit perfectly!

And can I jsut say how stinking cute they came out!!

So, lets jsut pray that these legs fit for longer than 4 months as I am about beat!

Twins?

Heehee (no we are not adopting again LOL) although there are a few I would love to bring home

I am not sure if I ever mentioned on here that a year ago this is what Brahm so nonchlantly mentioned to me

Momma, you know you left my twin in China

Hmmm, after the laughter, & shock I thought I would look at the shared list, hmm no same birthdays (there were 1900 kids on the list at the time) and the only two children with dwarfism even close in age I asked for their files and updates.

Anyhow, I often think about this odd statement that started the adoption to Griffen.

Yesterday, as I was trying to organize some pictures on my iMac I decided using the faces feature was the easiest since for some reason some of our pictures from China ended up misdated.

THis is a snapshot of what I kept getting from Apple LOL!

Over and over again I had to tell the computer that no this picture was Brahm and not Griffen!

Look at that nose, eyes and mouth LOL!

Opened door!

I think the hardest part of being a parent of a special needs (do you know how long it took me to use that terminology?)  child is the sudden unexpected breaks in your very own heart.  When Brahm was a baby they came more often - perhaps because milestones also come - more often.

Encase your new or read a thousand blogs (like I do and then get all the kids confused) Brahm is our youngest bio son who was unexpectedly born with a rare form of dwarfism (different than Fei and Griffen).  He is our heartbreak - yes out of all of our kids we find the most personal heartbreak with him.

Because he is our bio son?  I don't think so
Because he has been with us the longest?  I don't think so
Because I carried him and some how I am 'responsible' for this?  It took many years of prayer to realize he is wonderfully made despite me but this was a huge hurdle.
those are possibilities I always keep in my mind BUT

He is our heartbreak because we know that his body will never be as good tomorrow as he is today.  AS the time ticks by so does the function of his little body.  Physically, I mean ~ as in grandpa joint pain in a 6 year old.  As the season's pass we see him with more pain in his little legs.  Soon, our vivacious little boy will need the help of a scooter to get around.  It has already been suggested but we can't even imagine our boy with such a love for sports and all things boy admitting he can't.

So we look for alternatives, we use medication and we bounce idea's off of our friends with way more knowledge in body mechanics than we have.

We start Brahm way early in sports because we know by the time he will be old enough to really play - his body will let him down.  We want him to know what it feels like so when he coaches or even jsut cheers he will have an idea.

Brahm started skiing at 18 months.

Everything bought in the smallest sizes we could find and still to big.

He is a phenomenal little skier.

He has gone down a REAL hill ONCE.  It was a disaster and I had to carry him down the rest of the way.  The leg pain was jsut to great after half the hill.  He could do it in his mind - and I will tell you this boy of ours rarely complains of a pain that would make most people stay in bed.  When he looked at me with his big eyes behind his ski goggles and the tears rolled - my heart broke.

So we go where they have magic carpets or even his mother has been known to trek him up a hill so he can ski down.  But my heart broke for him knowing his days were limited on the slopes.

We have been praying for an answer for over a year.

And that answer came in the most roundabout way!!  You jsut gotta love God!
At our last amputee team meeting they discussed Cav and their ski program at Winter Park, CO.  I decided to google it even though he is 4 - cuz really it's Cav LOL!

As I read through their site - disability ski & snowboarding I thought of Brahm - there were options!!  Was it possible that the answer could be as simple as our boy trying snowboarding?  (We make all our kids ski until 7 and then they can try snowboarding (mainly because I do NOT snowboard and lessons for snowboarding start at 7).

Well, since yesterday was a holiday I finally decided to be brave and take all 6 kids up skiing by myself (thank heavens we had friends who we were meeting but this was a huge step for me.  AS in on my knees begging God that this would be easy.)

Big kids spent the day skiing/boarding with friends and Brahm went to snowboarding school!  That's right Copper mtn has snowboarding lessons for younger than 7 AND equipment that fit him!

Midday - I couldn't stand myself and hiked over to the boarding school to sneak a peak on my boy- oh that sheer moment of joy that a mother feels when you see your child doing something you weren't sure they could AND he had no pain!!  let me repeat HE HAD NO PAIN!!  now I am not naive enough to think it might because of the adrenalin but I am hopeful enough to think this might be an answer for our little dude!!  He did well enough he is ready for the chairlift next lesson!!

AS for the rest of them!!  Well, we realized Fei only had her squeaker shoes so we ran out the night before and found these little gems that actually fit (kind of LOL!))

Fei & Griffen LOVED the snow,

 watching people come down the hill

 and of course the food mommy brought!

My dear friend who loves on our kids like her own,

 and I was able to run to the bathroom without taking the herd with me!

And the biggest praise it was a gorgeous day!

You can see Cav pouting in the chair.  He doesn't like change in routine and being woken up at 6 am to go skiing was hard for him.  BUT we met a fabulous grandpa who was a double amputee and paraplegic who came and talked to Cav.  We were able to show him a sit ski in action and he seemed interested.  Thankfully, he perked back up about 3 and was able to enjoy playing in the snow and being with friends!

Making Cav's legs

I thought waiting parents or those who are having their first prosthetic legs made would be interested in seeing the process of how they cast to make Cav's new prosthetic legs.

Wrap the prosthetic in saran wrap (I keep telling him NOT to buy the cheap stuff LOL!)

Cover the stump with a stocking and then climb a belt around the waist to keep it up

They use an awesome pen they soak in water to write on the stocking.  It transfers to the inside of the cast.  THey mark anatomical landmarks and a guide to which they measure.

 See the circle with the X on the left - because Cav stood on his Fibula he developed a thicker head on the bone which sticks out.  They know by this mark that the indent is bone.

They measure with calipers to help us keep track of how he is growing,

 Because Cav has the lower part of one leg he also has more growth plates.  We had noticed he looked like he was looking like he was almost dislocating a hip when he walked.  Yeah, duh, his longer leg had out grown the shorter by 3/8 of an inch LOL!  They will accomodate for this on his new leg.

THey use the old plaster casts to wrap the leg and make the mold.

We had thought they could jsut slip the cast off because Cav's calf had shrunk, we did not figure in the bit of a ridge he has at the back where they added on his heel ~ so cutting was in order lOL!

Finally, got it off and a quick clean up!

Both plaster casts finished.

They are rushing (story of our life) his new sockets because he is wearing on his scar and it keeps opening up ~ so we go back in a week for the test sockets, x-rays and have our ortho check everything out.

*** THank Stacia - forgot this part LOL!**  Those looking at files with kids who might become amputees don't fret.  Cav is NOT normal in his need for new legs already.  He received his first legs the beginning of Sept and then a new knee about 6 weeks later.  Now he is receiving new sockets jsut 4 months from the time his first pair were made.  MOST kids need their first sockets in 6-8 months due to shrinkage NOT growth and then about every year.  HOWEVER, if you remember Cav had severe and chronic Giardia when we got him, plus severe malnutrition (I jsut came across a picture that reminded me of the holocaust ugh).  We have worked very hard with medication and then homeopathic to get his gut to a normal status.  I believe the need for new legs jsut 4 months after the first is due to his gut finally normalizing enough so his body can absorb some of his food - along with his little hoarding binge during Oct-Dec.  The boy finally has a little meat on his bones and some of that weight went into his thighs.  Because he is considered weight bearing on both legs (basically he stands IN his prosthetics) they have to fit within millimeters (the width of the socks) so they can't handle such drastic growth.  Again Mr Terry said he had never seen a kid grow out of his prosthetics like Cav had ~ of course not LOL!

We are fortunate that our insurance is good and we are hoping that they will cover these legs minus our yearly deductible (duh that wasn't good planning on our part but luckily we have 2-3 surgeries this year so it'll be ok.)

We are ONLY replacing the sockets so they will take apart his old legs and reuse the knee (that is only 3 months old) and feet etc.

Amputee choices

So tomorrow we go to see Mr Terry - has it only been a month since we saw him and realized we needed to start on new legs - cuz frankly I feel like I have aged a year in that month.  Good and bad.

Have I ever mentioned I am NOT the most organized person in the world LOL!  So of course Sunday afternoon I realize I need fabric for Cav's new legs - do you know half of the fabric stores in town are closed on Sunday (and I knew I had no time on Monday.)

At first I thought oh what a fun family activity - then I realized how much the fabric ladies would hate me for traipsing my entourage into their fine little quilt store to look for fabric to cover my poor handicapped boys legs - heehee rolling - those blue haired ladies probably would have been talking about us for years LOL!

So I took the next best option and texted pictures to the family from the store.

Cav still really isn't "verbal" enough to make a decision - everything is um, yep.  So since we have to look at his legs, I let the other kids choose with the restriction that they had to be friendly for preschool AND Kindergarten just encase they last that long!

Loved the pandas but no else did

Loved the dragons but we thought we would wait a few years

No one liked crayons Ugh you people kill me

Then we saw the Dr Suess collect - FUN!!

            

Hmmm Dino's are cute!

I thought puppies were cute and daddy thought bones were perfect

BUT then we all agreed on!!

I am not sold on bright red legs but they will be cute for 4th of July LOL!

So what do you think?
We really wanted sharks but have not found any shark fabric anywhere - if you see some we would love 1/2 yard!!

And in all his cuteness
watching the Broncos win um lose
Griffen using Brahm's Globetrotter's ball as a footstool
(see those feet - yeah that's why you don't buy shoes to bring to China LOL!)

HEart of adoption

Yesterday was the culmination of our journey to Tao.

You see I was so afraid of his HEART that I spent endless days questioning God.  Heehee even typing those words makes me laugh now.

Every consult we received while waiting the 6 weeks for an update (before finally sending LOI) was that Tao had six fingered dwarfism (EVC).  I can do short, I can do extra fingers and the required amputation BUT Hearts - I don't do Hearts God - you know even in nursing school I didn't do hearts.

You may ask why were we so concerned about his heart?

Well, for kids with EVC almost all of the kids show up with some form of Atrial (top part of the heart) defect.  From a hole to a single atrium.  FIFTY percent of the children with EVC die within the first year!  Tao's referral was made at 6 months and he was turning 2.  When we sent LOI (before the update ever came) we didn't even know if he was still alive.  We took that humungeous leap of faith because we were out of time.

THe update came after we got PA (dated before we ever sent LOI) he was alive BUT had not been to the Dr since his original file was done.

Can I tell you how many nights I allowed Satan to whisper his hateful words of doubt during our wait.  We knew he had a PFO but that's not really a heart problem - where was the Atrial defect - how severe was it?

(Now let me tell you I consulted many of the dwarf specialists and they all concluded that he had to have EVC - one who I sent the x-ray findings before the information about his extra fingers said he had a "greater than 50% chance that maybe he was the only known child with achondroplasia (like Fei) and extra thumbs."

The statement was our hope no matter how small.  But again I allowed Satan to whisper - you see Brahm is a 1 in a million - can a family really have 2?

I brought my stethascope, & my hope to China he seemed perfect but again hearts are hard for me - was I missing something?

Yesterday we met with the cardiologist, 

HE was LESS than amused LOL!

we had an EKG, 

a full Echo 

and . . . yep we have 

another 1 in a million kid LOL!  

I rejoiced but over the past 24 hours as 2 very dear little girls fight for their very lives I looked at their parents and I felt shame.  

REally, who am I to tell GOD 

that I couldn't 

or more importantly wouldn't 

do HIS work 

because I was afraid.  

Please will you pray for the families below THEY were NOT afraid, they followed God in a way I personally couldn't.  I stand in awe of these families and we have been lucky enough to meet many more of these families along our adoption journeys.

IVY ~ is only a week older then Tao

LILY ~ sweet girl has been in the hospital 7 weeks

Sensory - making a weighted blanket

SO I left you all hanging with Cav's issues - we have implemented (have been for about a month now) new things that seem to be helping.  At this point I am all about trying anything.  It's almost like a language I don't speak - which is hysterical since I have the cutest baby who speaks Chinese sitting next to me and we communicate perfectly together LOL!  

I will do a series of posts on the things I have learned so hopefully it will give others ideas on things to try before things get bad.

SO I heard of the weighted blankets a ton but they can cost close to $100 - which I would be willing to pay if I had any true idea the thing would work.  It does - infact, it works so well I am making 2 more for a couple of other kids in our family.  Cav NEEDS one, but doing my research I noticed a couple things that clued me into my other kids.

Brahm (aka the evil genius) - he has a hard time shutting down his brain to go to bed.

Morgan - she will find every blanket in the house to cuddle with to watch tv

SO I made Cav's and had them try it out - they instantly wanted theirs!

Before we begin some hints.

You can order poly pellets online - unless like us we wanted it now
 I got mine from Michael's in the foam and fluff section.
*I used a coupon (on my phone) and went back several times LOL!
*THey are currently $8.99 for a 2 lb bag and I wanted to make a 4 lb blanket for Cav.  Weight directions are below.

THe blanket fabric is flannel.  I got this from Joann's because they have the best sales as in frequently 60% off on flannel.  And don't think ugly shirt stuff they have great coordinates.

The words also give me lines

When I made Cav's (monkey's) I luckily had grabbed one that already had lines in the pattern.  You could easily measure and chalk lines for your rows but you know we would all die of old age if we waited for me to do that.

THe flannel comes about 41 inches wide
A yard of fabric is 36 inches so I chose to have cav's cut to 1 1/8 yard at the store (both pieces)  Brahm's is 1 1/4 and Morgan's is 1 1/2 yards.  ( I also ended up going back for fabric that had lines for Morgan and Brahm's blanket so I didn't have to measure)

So Although this is dots, it gives me lines to work with

From the little research I did it seems the conscensus is the blanket weight should be about 10% of the child's weight - I rounded up and didn't bother to take into account the weight of the flannel etc.

You want even squares throughout the blanket AND they should be about 3 or 4 inches square but not more than 8x8 inches, with the weight distributed evenly.

Because of the design on the fabric I chose to use every other "square".

I ran a basic stitch around 3 edges (fabric was inside out or face to face)

TURN THE FABRIC RIGHT SIDE OUT for the rest of the sewing.

Because I had an even number of "boxes" on the pattern I sewed a channel from my open side all the way down (or top to bottom)  I created channels all the way across (2 blocks wide).

**Don't sew your channels all the way to the top of the open channel - leave room to fold in each side when you go to sew the top closed.

So I ended p with 7 channels AND I knew (because I had the squares to work off of I would have a total of 49 total squares when I was done.)

I poured the bags of pellets into a measuring cup and divided the number of cups by the total number of squares.)

You then just fill each channel with the amount (I think I used about 1/4 cup in each channel).
Shake the beads down and sew across at the predetermined spot creating your first enclosed square filled with your 1/4 cup (whatever amount) of pellets.

Fill AND Sew until you get to the top.

Fold the top over and sew across.

You are all done, the blanket is machine washeable and the kids LOVE THEM!

THe Fall

Oh the New Year's posts I had in mind but the last few days have been . . .um . . . heartbreaking!

THe honeymoon so to speak is over.

We have had precious items of siblings broken,
toys covered with sharpie,
food stolen and hidden,
and attacks on short people.

We HAD to make some changes.

Griffen is HALF the size of Cavanaugh, and also seems to be his newest scapegoat.

THe one nice thing about Griffen being so short is we know for a fact that he is NOT the one getting into things although that is what is sibling is saying.

This was my breaking point.

(and believe me I know WHY Cav acts like he does, and truly my heart breaks for him) BUT we also have 5 other kids in the house - where one little boy is causing enough chaos for 10 people.

Although our house is large, we really lack for bedrooms.

We have 2 upstairs (besides the master).  Cav shared with Brahm, and Fei had her own room, they share a Jack & Jill bathroom.  Eventually the baby was to share with Fei.

Anyhow, thanks to my dear friend Sarah I was able to see the light and we changed this darling room I did right before we traveled (ugh)

Into a room complete stripped of toys, most decorations (and the babies stuff will also be moved out)

Folks, I was up at 2 am several nights in the row feeling terrible about what I had done to our family.  Then I came across a fabulous article on older adopted children who were orphanage only.  By older they meant 3 - 4 year olds.  It talked about a completely stripped room without stimulation.

It talked about introducing the adopted child into the family, as I read the article in the middle of the night I cried tears of such pain - I had done EVERYTHING wrong.  That is why I am bearing all our dirty laundry.  If it helps jsut one person it will be worth it.

Anyhow, our house has now been turned upside down, but I do have to say that I am proud of Brahm and Fei for agreeing to share a room - in fact they were excited.

Moving everything from 2 rooms into 1 has taken some time for this disorganized momma.

But we are getting there.

The benefit's are already being seen though.  THe biggest is everyone is sleeping.  Before the move (and for the past year) Cav would wonder the house in the middle of the night (I didn't realize how on guard I was during the night) or get up at 5-6 am - feeling the need to wake the rest of the kids.

NOW, we have been able to lock the door of the adjoining bathroom (he still has access to the toilet) and put a baby gate in his doorway.  Everyone, has been sleeping in and he plays quietly in his room with the toys he has earned back.

In addition, without a room full of toys, we have a very tangiable commodity for him.
Good behavior = a 'new' toy.
Bad behavior = removal of a toy.

In addition, it has given me a break.  I can place him in his room - say when I go take a shower without fear he will hurt another child, steal, or the hundred other things he has done for the past year.  In addition, because of the location of the room and the baby gate only door he is still part of the home environment versus alone.

Although he has been here a year, we are slowly reintroducing him to the concept of "family".  Most importantly - and perhaps my favorite part of the article is teaching him about caring.  All along we have taught about love and family.  Duh, he has no concept.  but caring - well do you know when you get down to the brass tacks we do a ton everyday because we care.  The difference is that now I talk about what I am doing and it is because I care.

Oh mommy checks the bath water because I care - if I didn't care it would be cold
Mommy makes this because I care,
mommy gives you clean clothes and on and on and on.

I actually seem to have more time for teaching him, because I am not running after the kids trying to overt disasters or picking up the pieces.  The other kids are happier because they are safe.



And I have calmed because when on 1/1/13 you decide to rearrange the house and you find THIS ~

I had thought for some time he was stealing food and hiding wrappers but couldn't find them **(and I had jsut watched him from the upper landing sitting right in this spot, looking around for his siblings to come up the stairs and hiding the stolen bar as soon as one did, the day before the room move.  I had checked under the coach but the chaise part has a cover you can't see the floor and my hand didn't fit.  So I didn't think there was anything there ~ Surprise, Surprise, Surprise!)

THis is jsut ONE bit we found moving that couch - now I am not naive enough to think all I found was jsut him

BUT

When you find this next to some chewed up seeds your heart breaks into a million pieces.

So please pray for us - I know he is worth our time, our effort.  We so desperately want him to be part of our family, he is such an amazing kid with so much to offer the world.  We desperately ache for how broken his very core is.

** And don't for a minute think this is a lack of food issue.  We ALWAYS have grapes, apples, and oranges on both the kitchen table (he can reach) as well as the island.