Ella Grace and the Doctor Visit....

Well, first, we had a little practice session at home, and I think things checked out JUST fine!

I have to say, first of all, that with our insurance, we have to see Doctor's who are in our group plan.  I was referred to a doctor who is supposedly a "specialist" in Down Syndrome, and after our first visit, I can assure you that she was/is not an expert in the field by any means.  We really were extremely disappointed in the visit we got, and we had to request every single test that was ordered.  Their initial feedback, after being seen one time, was come back at age 5 for a well-check.  Ella Grace is terribly underweight and tiny, and I know we need to have her weight checked again before NEXT year.  We were left with big question marks regarding her immunizations, and they left it at, "come back at age 5 for regular immunizations".  Needless to say, we know we are going to have to find another doctor to take her in to see.  The question is, who do we take her to, who is in our group plan???  In the meantime, we asked for a referral to a pediatric cardiologist to have her heart re-checked, since she came home after having a major heart surgery.  We want to be sure that all checks out and is okay.  We really feel like she's doing well, but want to see the proof! 

We requested a whole slew of blood tests, as well as an x-ray to have her spine checked for atlantoaxial dislocation, which she would be a candidate for because of her extreme "floppiness".  There's no other way to describe her, she's extremely floppy in all of her limbs.

She has also has been referred to do a hearing screening, and will eventually visit a pediatric dentist, and opthamologist.  We want to have her heart checked out before we take her to have any other procedures done. 

We left the clinic, after her doctor's appointment, and decided to wait a few days to put her through the xrays/blood draw, so we will tackle those this week.  She handled the short visit with the doctor very well, and came in weighing 23 pounds and measuirng 32 inches tall.

We've GOT to find a doctor who will take all of her history into consideration and show some interest in her case.  She's been through SO much in her 4 years of life, and we want to make sure that she is doing well, and will continue to grow at a healthy pace.

We have her school evaluation scheduled for April 1st, where we will be able to recieve speech therapy, physical therapy, and occupational therapy.  We don't plan to send her to school at this point, but plan to take her in for scheduled visits for her therapy.  We will look at school options next year, when we feel like her bond with us is completely healthy.  She definitely knows we are her family, but I just can't imagine dropping her off, being so small and vulnerable at this point. 

I don't share all of this to sound like a "complainer", but just to express that sometimes it's hard to find the right care, and very frustrating, when you take the time to entrust your child to someone, only to find out they aren't equipped to care for your child.  We are hoping, that maybe, through the pediatric cardiologist, maybe we can see who they recommend, and hopefully to receive some clear direction to her care.  At this point, we feel as lost as when we started.... but now have a few tests scheduled, at least.  I'm just not comfortable with the fact that we had to request every single test, and I'm not sure that we have everything covered!  I will keep you updated as we continue on this journey!  

In the meantime, how about a little cuteness?  She's wearing her new dress from her Aunt Cheryl on her first Sunday at church!  Just LOVE this girl so much!