December 2008

20 Months: Well, Wynter has a true Igf1 deficiency. It is hard to know what to do to help correct it. The only one Igf1 med is TOOO dangerous....so our other idea is to supplement Growth hormone to see if her liver receptors will start to read the HGH and in turn produce the Igf1. But insurance doesn't want to pay for the $20,000 a year medication. But Dr. Leitchman is convinced that it will work. With out IGF1 in a typical person: the body does not have an ability to form muscle, they don't grow, they become insulin resistant with age, and cognitive function decreases with age as well. So we have to do something.

Wynter has about 12 words. Most of which are just the beginning/ending sound of each word, with a point. >I.E. mama, dada, buba, more (and sign),baby, ball, this, banana, done(and sign), yes, I did it, hug, this, and puppy. It is also very clear to us that Wynter DOES know how to go potty upon request. It is not a coincidence because even if she does not have to go, you can see her pushing and trying! Now the hard part is learning not to go in the diaper, and communicating that we need to go to the bathroom.

UPDATE:Wynter got approved into the Pfizer bridge program. They will provide the injectable Human Growth Hormone for her while they send in appeals to the insurance company. She will be given daily injections 6 days a week for 3 months. We will then repeat her blood work to see if the levels have changed, possibly adjust the dose and try for another 3 months to determine if this will help her or not. Thank you all for your prayers as we begin this new stage in her life.