Genetics and Knowing too Much/Little?

I wanted to post her genetics information here so that other people who may be curious or have the same markers could read the post! Please understand that this information is a lot for us to compress into understanding let alone anyone reading this. I've included links to help explain some of the larger medical terms. I'm also posting an updated 14 month photo with her stats for this month. In a couple weeks she will be 15 months old and I feel at times we are no closer to knowing the long term care than we were when we started this process nearly a year ago.

Elenor has Uniparental Disomy of her 2nd chromosome: Uniparental disomy (UPD) occurs when a person receives two copies of a chromosome, or part of a chromosome, from one parent and no copies from the other parent. UPD could involve isodisomy (meiosis II error) or heterodisomy (meiosis I error).
(http://en.wikipedia.org/wiki/Uniparental_disomy_of_2) - She is diagnosed with RSS but does not match the typical genetic information (chrom. 2 instead of 7 or 11) - thus confusing the genetic team very much!

Elenor is one of only 9 documented cases of UPD of Chromosome 2 with Russell-Silver Syndrome (http://www.nlm.nih.gov/medlineplus/ency/article/001209.htm) Phenotype secondary to absence of heterozygosity. She has left side torticollis, scoliosis, hip dysplasia, hypotonia, hypermobility in her hips, ankles, and wrists, short stature, FTT, hypothyrodisim, no growth hormones present in blood, Clinodactyly of fingers and 4, 5 toes (http://en.wikipedia.org/wiki/Clinodactyly), overlapping toes (2 and 4 overlap 3 bilaterally), severe GERD, plagiocephaly with asymmetrical facial features and triangular shaped face with facial dysmorphism (http://en.wikipedia.org/wiki/Facial_dysmorphism) (http://en.wikipedia.org/wiki/Plagiocephaly), benign external hydrocephalus with macrocephaly, high set nipples, widely spaced eyes (97%ile), prominence of veins between eyes, lip tie, notched bottom teeth, perfect round nevus on left leg below knee, and nevus flammeus on nape of neck.

The loci for her absences are here: (2q11.1-q13, 2q22.1-q31.1, and 2q36.2-q37.3) - The geneticist and counselor we are working with believe it to be a case of trisomic rescue (http://en.wikipedia.org/wiki/Trisomic_rescue) and we are currently awaiting a pituitary stimulation test to have myself and dad to go do mouth swabs to determine who got swapped out and if we are carriers for any recessive disorders. The belief at the moment is that somewhere on those loci's of chr.2q there is an imprinted gene or recessively mutated gene that caused these mutations. At that time we should also be able to determine if the right arm of the 2nd chromosome is a ring chromosome. (http://ghr.nlm.nih.gov/chromosome=2)


Elenor at 14 months:


Stats: 
Weight - 16lbs even
Height - 26.5"
Head Circ - 50cm

Skills:
Hands and knees crawling, pulling to standing, feeding self with fingers, sleeping through the night, and saying around 10 words.