What a long week and another long week ahead........

This week we had a few important appointments that we had been anticipating. On Wednesday, Cohen went and saw the ped endocrinologist to review some labwork we had done 2 weeks ago. At Kinson's 3 year check up, Dr Flowers had gone over her results with me so I would be prepared when we got there. We had her IGF-1 retested (her first test was at 12months old and we wereunable to get an exact number-we just knew it was low) and this time we were able to get the exact number read which was 29. Normal is 99-599. So this just confirmed what we were already preparing ourselves for, that Cohen is growth hormone deficient. The endo went into a little more details about the exact meaning and the further tests required to get more exact deficits and what the future might hold. These specialists do not beat around the bush--they tell you the good, bad, and the ugly upfront. Which at times can lead me to a lot of wasted time worrying, but it also gives me time to prepare for what is ahead. We do know that we are about to fight with insurance companies regarding the high cost of growth hormone treatment and also we have found out recently how screwed up the state and federal assistance programs are. As we speak we are in the 60 day waiting period just to be denied (which we knew from the beginning we would be denied but you HAVE to be denied to move to the next step) only to then file for children at home with disability and wait 5-7 MONTHS before we can have our interview to see if she would qualify. Hmmmm, wonder how many other children could be helped if we didn't have to pay people to do all these unneccessary steps when it is clearly outlined what will qualify?!

Next day, Thursday, we met with the great team at Magnolia Speech School. Yes, I am an OT and yes they taught us about all these great techniques and theories about teaching and environments for children but then I graduated and stepped into the real therapy world where patients aren't as textbook and the necessary equipment is not always available. But this place did not dissappoint. It was like walking into the Therapy Oz!! Everyone was so nice and all the mothers knew each other and the classrooms were decorated wonderfully and there was every imaginable device and learning tool ever needed in those rooms. If it is determined that Cohen will have to attend scholl here in the future, I will NOT be upset one bit!
But Cohen had different agenda that day, she was not there to impress anybody! We were there to meet with the audiologist and ST. They put us in this little soundproof room, where Cohen would have to look in the direction she would hear sound coming from. She cooperated for about 2-3 minutes and then she had enough. Then they decided to test each individual ear using earbuds---not going to happen! Cohen's ear canals are micro size so the ear buds didnt fit and she wasnt going to leave them in anyway. They suggested that we have a more definitive test at UMC where she can be sedated. Then we met with the ST who just performed a few standardized tests to be put in her file and Cohen's current speech therapist will do these periodically to see if she continues to fall further from her age group, maintains, or improves. This will help them as she ages to determine if she will be a candidate for enrollment as a student at Magnolia. They dont accept children until close to their 3rd birthday unless you are deaf and they take children as soon as they are walking. We know Cohen is not deaf, but they still are not sure exactly what and how clearly she hears.

But if you have a small moment Wednesday morning say a little prayer for Cohen. We are going to the hospital to have another test performed that requires her to fast 12 hours prior, have a medicine administered through an IV, and then have her blood drawn every 30 minutes for the next 2-4 hours depending the results---all in this time period she can not eat. This test will help to determine the function of her pituitary gland and what the next step will be in achieving the eact diagnosis and regimine needed. I will update as soon as we get results.