Sunday, October 30, 2011

Frequently asked questions.


Since I started this blog well after Case was born I thought I'd make a post incase some of the readers aren't exactly sure what is really going on with this sweet boy.

How preemie was he?
Case was less than 4 weeks early according to my latest due date (they pushed his due date back a week or so because he was measuring small).

How much did he weigh at birth?
Case was born on December 21, 2010 at 2 pounds, 13 ounces.

How long did he stay at the hospital after birth?
38 days.

What exactly is wrong with him?
I think he's perfect.:) Case was born with several congenital anomalies.
*IUGR Intra Uterine Growth Restriction. This was possibly due to his umbilical cord and the placenta being abnormally small.
*Failure to thrive. A scary way of saying he isn't growing as much as the doctors would like him to.
*Severe Hypospadias which will be fixed with surgery.
*Cryptorchidism which will also be fixed with surgery. *Update: This was fixed on 7-9-12
*One multi-cystic dysplastic kidney that does not function.
*A resolved VSD and ASD.

PROBLEMS THAT DEVELOPED (or been found) SINCE HIS BIRTH:

*Gastroesophageal reflux disease (GERD) 
*Hyper gag reflex
*A PFO.
* Sacral Dimple
* Submucous Cleft Pallet
Keratosis pilaris (Chronic Skin condition)
* Slow motility. 
* Case is J tube fed 22 hours a day.
*Tethered cord *Update* Tethered cord was released via surgery on October 29th, 2012.
*Abnormalities of his brain stem
*Senosis of the Foramen Magnum (the hole his spinal cord goes into is small)
* Found that his left ear drum does not vibrate due to fluid behind it. 

Does he have any other surgeries coming up?
It's looking like he will need a g-tube placed in the near future.
*Update. Case had a g-tube placed and a Nissen fundoplication on November 22, 2011. He spent 5 days as an inpatient. Yes, him and I celebrated THanksgiving in the Children's Hospital.:)
* Update: Case had his G tube changed to a GJ on June 22nd, 2012 due to vomiting and intolerance.
*Update. Case had the first of four surgeries to fix his boy parts on March 2nd, 2012. He spent only one night inpatient. His next surgery in that "department" is July 9th, 2012.
* Update: Case will have his 3rd of four surgeries "in that department" on December, 12th 2012.
This is a total of 5 surgeries. He will have more in the future.

Who all does he see?
1. Cardiology (only once a year).
2. Endocrinology
3. Urology
4. Nephrology
5. Genetics
6. Gastroenterology
7. Our local pediatrician
8. One physical Therapist
9. Occupational therapist (to help with eating issues)
10. The feeding team at Children's
11. A nutritionist.
12. Cranio-Facial.
13. The surgeon that placed his Mic-key and did his Nissen Fundoplication.
14. Dental Clinic at Children's
15. The Dermatologist at CHP.
16. Orthopedic Surgeon.
17. A speech therapist.
18. Neurosurgery
19. ENT (ear nose and throat specialists)
20. Neurology.

Does he have a syndrome?
They have him diagnosed as "having an underlying syndrome" they just haven't found it yet.
*Update: They are starting to look more vigourously for said syndrome and started a Whole Exome Sequencing test in October, 2012. It will take 4-6 months to get any results.


Is he meeting all his milestones?
Mostly.

How do you feel about all of this?
Blessed.

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