Genetics Clinic

Because of FLs cleft lip and palate, birthmarks and some other factors, our pediatrician gave us a referral to a Genetics Clinic.  FL has already had a CGH panel run, which came out showing no abnormalities.  So, Genetics Clinic (provided by a state run program) was a "just to be sure" precaution.  I am also wishing that we had done the same for C, as I have so many new questions and concerns that have come up with hr possible CP, but she presents herself so normally and is quite brilliant (FL is, too - and though I am biased, I believe it is true!) that most every medical professional has laughed off my concerns.

The day started off rough, as Sam was leaving town for an extended period.  We were all a little blue, especially me!  The girls are pros at waiting for appointments now, so I usually don't worry too much about them!

The Genetics Clinic is put on by Children's Rehabilitation Services of Alabama through the state.  They have many other programs, and after meeting with a social worker, I found out that we qualify for the sliding scale of payment based on our income!  Also, there is never a copay.  The clinic was clean, efficiently run and the members of the team were kind and knowledgeable.  We met with a nutritionist (who absolutely fell in love with the girls - she spent a lot of time with us!) who took FLs measurements (she is on all American growth charts now and in many areas normal- yay!) and asked about her diet and eating habits.  She was very willing to answer some additional concerns I had about C and give me guidance in other areas of the girls' health journey.

The geneticist was kind and did a good exam of FL and looked at the different areas of concerns.  Even with those differences and her cleft lip and palate, he felt that she was just fine and needed no further testing.  He based this on his exam, my strong feelings that she is doing extremely well, cognitively and her CGH panel that showed no abnormalities.  He felt that if she had some sort of genetic issues, they would be showing up cognitively and all of her differences were "common" differences.  He said to watch her as she grows and develops cognitively.  He said, "the child will tell you!" In his thick Latin American accent.  : )

After seeing the doctor, we saw a social worker who explained more about the state's Cleft Lip and Palate Clinic.  Unfortunately, we would have to stop seeing our current craniofacial surgeon/team at Children's Hospital.  I have been advised by knowledgeable sources not to let the state team operate on my child, so this is not going to be an option for us, though it would greatly lessen our future medical bills.  FL is worth it and more!  We want her to have the best we can give.

Other than a double meltdown in the social worker's office and later in the restroom (I confess, it became a triple meltdown once we got into the hot car!) we had a great visit and I am going to look into further resources for both of my girls through the state, in addition to the private resources we are using for therapy and medical care.

If you have a child with CL/CP, please look into your state resources.  It may be well worth it!  If you have a child in need of therapy, please look into it as well.  Once our summer travels are over, I plan to really push to get the girls more help.  It is a joy, honor and privilege to have these precious girls to fight for, even if there are a few meltdowns along the way!