Repairing Cav's hands

YEAH!

Although this was a completely unknown and unexpected special need (I do laugh because radial club hand was an original item on our medical checklist and limb difference was NOT!)

So a month and 2 sets of cast we got to see our amazing Dr's handiwork!  And can I jsut say it was amazing!!

He took the tendon from teh ring finger ~ fished through and around the tendon by the palm (pinky side) and the attached it to the thumb.  In essence it has created a pulley effect.  They had enough tendon to wrap? it around the thumb stabilizing it and keeping it from constantly dislocating.

So we pulled off the casts yesterday and his thumbs (which previously was up by the other fingers) is now down where. . . you know where a thumb should be!!

Cav did great - I mean really I think this is cast number 11 & 12 for the kid to have removed and he finally has stopped screaming!!

The interesting fact is that Cav's casts did NOT slow him down at all (as in coloring with black sharpie on my light carpet slowing down LOL)  We realized how much he used the pointer and middle finger to do everything.  Now as his hands heal we will have OT and make sure he develops a pincer grasp.

Our amazing Dr came in to check on his work and then we were off to have splints made.

THere is also an incision on the front side of his thumb

I of course grabbed some washcloths to wash the grossness that had become his skin ugh.

Little man got to spend the day with us and besides the raging temper tantrum Cav had to throw in the mall it was a great day!!

Couldn't you jsut bite his little keester ` so cute!!

** I can't believe I forgot the most important part of the day.**

Because we didn't know,

We also did NOT research hand surgeons,

BUT GOD

oh God sent us to the most amazing man.

He loves our boys,

There are very few people I let touch my littles,

but we are going ahead with Tao's surgery on May 10th.

I am at peace with this man.

I know that Tao's story especially,

touches him,

I pray that someday I might now how God is using this tiny boy of ours,

and what God has planned.

I also spent most of the drive home in tears,

not because the days was stressful,

or Cav lost it once again and then regained it,

but simply because God is in the details,

He knew this journey even before we went on it.

THAT gives me such comfort

More Cav while we wait

I know I have other children LOL!

And we are waiting on our TA - which makes me want to sit and check the computer non-stop instead of the 1,000 things I need to do LOL!

We are yellow (this is the chart on chinaadopttalk under forums)

BUT this little - um big guy keeps us hopping!

This is how our day on Tues went

Leave the house at 7:30
8:15 - OT appt all the way down south
forgot the dang handicap sticker so run carrying his slow self to be remotely on time
call hubby to bring the sticker on his way to work.
Hubby arrives while OT is making splints for Cav's hands to help with the suspected carpal tunnel

9 am - leave OT an race back up north for our 10 am appt with prosthetist in Denver wishing we had a helicopter LOL!

10:15 - arrive - wishing I had, had time to stop for a coffee

10:15-11 - Mr Terry builds Cav's new legs, giving him a better knee and making him 1 3/4 in taller!

11-12 - Mr Terry teaches Cav how to use his new knee.  Shows me how to work it

Mr Terry - LOVES Cav and we LOVE him!!

His new KNEE!!  Gotta love the tool fabric on this leg LOL!

This knee is much beefier and he should have a more normal looking gait.  By touching his toe it bends then swings through.  He has a bad habit already of swinging his leg out to the side.  Also this leg set up will allow for him to run - we already seeing him much faster!!

12 - leave the prosthetist and promptly get lost on our way to Denver Children's for 1pm appt

1:05 - finally arrive, use Valet, see Mr Terry walking into Denver CHildren's and again run to our appt.

1:15 - Meet the hand surgeon recommended by the amputation Dr.  Well, first we met the fellow and medical student.  Show them Cav's funky hands, tell them he needs working thumbs to get his prosthetics legs on and off.

1:45 - Meet the actual hand surgeon and he takes about 2 minutes asking Cav - can you do this, how about this.  Light bulbs start flashing over everyones head as we see him try to lift his thumb away from his palm without using his fingers.

1:50 - Diagnosed with mild Radial Longitudinal Deficiency - if you think of the arm as a leg, the radius is the same as the tibia.  Basically, jsut like his longer leg and foot didn't develop right, the same happened in his arms but even more mild.  THe radial bones are a tad short but we will watch that for now.  But it caused his thumbs to become hypoplastic, and he is missing some ligaments.  This is why his thumbs have no strength and look like they dislocate when he moves them.  Heehee as I was writing stuff down on my phone - he kept saying if you google it you will see so, and so.  I finally told him that if our amputee Dr trusted him then so do we.  I jsut needed to write down the words for my husband LOL!

So Cav is between the B and C pictures

So, we are looking at tendon transfer surgery on both hands.  I also showed him Griffen's extra thumbs (cuz you so know God has a sense of humor LOL!)  We can do both boys on the same day.  The big question is should we do both of Cav's hands and be done or one at a time.  He has to do OT after they heal and this is where our insurance is lacking.

2:00 - Throw out the new splints

2:15 - Move a few halls down to see the amputee team.  I love the clinics but man it is overwhelming.  I am sure there were no less than 12 Dr's, therapists and prosthetists.  I lvoe this group - they rejoice with us at how far this boy of ours has come.  We got a few hints, they were amazed he had the knee for only 3 hours and was walking on his own, and were discussing at what age he can join the Children's ski team LOL!

X-rays to check alignment

**Cav wears his legs from the time he gets up (and momma remembers to get his socks) until bed.  They said they have never seen a bilateral amputee take to his prosthetics as well as Cav has.  I truly believe that this is because he was different without his legs in the orphanage.  And if I know anything, I know that my Chinese kids don't like to be singled out**

3:40 - finally, in the car and realize we jsut might have enough time to race back to the Springs, and see Tristan's wrestling match.

4:45 - walking into where the match is at and my phone starts dinging!  Yep, all the mom's and my hubby texting me to say he jsut won - dang!  We still went in, congratulated him in the hall and Cav got to show off his new knee to the biggest fan club!

Since daddy was home early we all went out to eat and really had a fun night.  

Prayers answered!

What a down right stellar day!

I didn't realize the stress I have been carrying on my shoulders.

For those who don't know, we actually discussed disrupting Cav's adoption in China.

 I tell you this because a recent discussion on RQ has brought to light that we should have discussed WHAT if's ~ even the crazy impossible ones BEFORE we left.
Not when we were sleep deprived and couldn't provide the basic essentials for our family.
Not when we somehow lost sight of God in a land without religion.
Not when Cav was trying to destroy the room
official offices
or taking out little man.

Why you might ask would we even contemplate disrupting his adoption?

Cav has significant leg issues, we knew that, we researched it BUT it is a 1 in a million birth defect and he is affected bilaterally!  I am to bad at math to know what that equals, but know only 30% have bilateral tibial hemimilia.

THen we saw Cav, and I immediately saw that both his hands were also affected.  All FOUR limbs!?! THe chance of having a genetic disorder now affecting his limbs was exponentially higher.  THIS meant he had a very high chance of having organ issues.

We NEEDED to discuss if we could care for him,
we NEEDED to remember that this was still the child that GOD sent to us,
we NEEDED to realize that GOD knew what we could handle when we reviewed his file,
HE knew we would have looked at him with our humanness not trusting in HIS plan
knowing full well that HE would take care of this child He had already moved mountains for.

This is what we saw ~ 

An ODD looking hand 

No muscle below the thumb

A primal raking grasp

No pincer grasp

Minimal strength

This is what God Saw

 Today we learned that this "defect" that seemed so large in the midst of China,

THe one Satan used so incredibly well to turn us away from our purpose,

Is minimal,

May need surgery,

SOMEDAY!

We learned an incredible lesson that we will carry until we meet our Creator.  

Jesus looked at them and said, “With man this is impossible, but with God all things are possible.” 

Matthew 19:26

Medically Crazy!

Can I jsut say I am exhausted!  We had regular pediatrician appointment that lasted almost 3 hours yesterday and then an orthopedist one today.  Since I formerly worked as a nurse, I do hand pick our kiddos Dr's to ensure I am not just a number.  I am truly glad now that our kids are medically unique to say the least!

Pedi - everything was pretty good all the way around.  Mainly, I was thrilled that their hearts sound good as we were a little freaked about Cav in China, 4 limbs having issues can include heart issues also.  Now don't get me wrong, I am absolutely in awe of the parents who adopt children with heart issues, but I think my nursing past jsut gets in my way.

We got the scripts for lab and stool, urine etc.

FeiFei's vaccines were translated into English so she only is minimally behind.  Cav however I think they are going to start a catch up - redo plan.  I think the fact that his medicals completely missed his hands really left the Pedi with little confidence in them.

FeiFei - will also see an audiologist simply because we have no idea how many ear infections she had and if she has an damage (dwarf thing.)
And have a sleep study since she snores really bad and oh yeah it's another dwarf thing.

Cav - Consult for a developmental evaluation aside from the schools.
Genetics - this is because we now have something wrong with all four limbs

THEN today we went to the Orthopedist.  Since our three youngest are all in the ortho realm this was our BIG appointment we made in Nov!

Let me jsut say DON'T FORGET THE IPAD when you take 3 preschoolers to any Dr appt!  I felt like this by the time I was done!

Seriously, they were all very good it was jsut a very LONG appt!  

We played in and made a mess of the room for quite a while!  Luckily, FeiFei had her purse and momma brought snacks and a pack of Go Fish cards!

After we introduced each one to the Dr we went for x-rays.

Let me jsut say this was NOT one of my finer moments but the inconsiderate and idiotic jsut doing my job ma'am x-ray tech threw a fit that I was bringing all three little ones into the x-ray room when he called for little man.  He said I have 8 x-rays to do - I was like Dude, the next three are all my kids besides where exactly do you want me to leave the 2 non english speaking ones!  Besides the fact that we planned on little man missing school today so he could show the other two that it was a no owie appointment and to stand still.  

He finally went to get the Dr to complain about ME and she was furious with him.

Anyhow, we got it worked out.  And all of my sweeties did fabulous!

Checking FeiFei's cervical spine

I was so proud of this little guy, he calmed when I went to him and of course it helped that I had little man run and get my iPhone so i could use the jibbigo app.

Sorry for the crappy cell phone pics, but an 8:30 appt I was just glad everyone had underwear on!

SOOOOO. . . 

Prognosis ~

Feifei 

1. Her cervical spine looks fabulous and NO evidence of instability!
2. Her legs are . . . STRAIGHT!!  Awesome, as most little people have some bowing over time.
3. Definately has Achondroplasia
4. She is so good we don't need to take her back for a YEAR!!

Little Man -

1. Ugh he all of a sudden has a 19 mm leg length discrepancy
2. She sees NO evidence of his epiphysis being different
3. He is now classified as UNDIAGNOSED again!  I could jsut cry as this was out of left field!

Cav Legs -

1. He definitely has Tibial Hemimilia (1 in a million birth defect)!
2.  Left side actually has a smaller tibia, and she is thinking a below the knee amputation or symes
3. She did say she thought he had no ACL in this leg so I am not sure how that will play out.
4. Right side - NO TIBIA at all.  This also means no knee joint so this will be a through the knee
5. we will wait for bonding and language before amputation
6. His hips were great
7. His spine abnormality will correct and she thinks it was due to laying in bed so much in the orphanage (similar to the dwarf kyphosis that disappears when they begin to walk!)
8. She gave me the idea to buy shin guards to help him not get so wet when outside!

Cav Hands - 

1. If you remember my in China post we had no idea he had anything wrong with his hands before meeting him.  But I immediately noticed they looked like 5 fingers.
2. We found out that the 1st metacarpal is underdeveloped
3. His thumbs are NOT opposable at this time
4. We have an appt with a hand surgeon for Feb 2nd
5. We are possibly looking at lengthening the bone that is there
6. The current "thumb" might have to be rotated down 
7. I am thrilled to know we can do something to "fix" this!

After we were done we ran down to Daddy's shop and stole him away for lunch.  We discussed x-rays over pizza as I knew he would be livid over little man's newest non diagnosis, diagnosis (this is probably the 11th in 5 years.)

Oh and the dishwasher STILL doesn't work, you know the new one installed on Jan 5th, the motor doesn't work and they will be back on the 18th!

I have to laugh as one of these things would have sent me into a tail spin even 3 years ago, but I guess our new normal is so crazy that we jsut go with the flow - oh and believe that God has a plan for all of us!