Thursday, January 12, 2012

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!

2 comments:

  1. I am so sorry to hear that little man still is a medical mystery! I am happy to hear that Fei Fei is doing great and there is a plan for Cav! Praying for little man, though, I know where you stand with not having answers!

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  2. Congrats on bringing home the kids! So excited for you!

    Our daughter has fibular heimiela and had a symes amputation. We have another surgery coming up in April. Feel free to visit our blog and learn more. TH is similiar to FH.

    http://2boys1princessa.blogspot.com/

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