So, I hope you enjoyed our little revisiting of our first vacation days. The best is coming. Monday, we took the kids to Disneyland for the first time. I have to say that I was very impressed with the behavior of our children. They didn’t whine about getting anything from the hundreds of vendors that swarmed us. Pretty great. Plus– even though they were so tired, they remained happy the whole time. It was wonderful. So many memories made and little faces gleaming with excitement. And as if it couldn’t get any better, the longest we waited for a ride was 30 mins, and that only happened once or twice. Perfect!
To end this perfect family time we went to see Dr. Rimoin in LA. It seems that much of what I have learned about Metatropic Dysplasia has been incorrect. Josie will only have complications affecting the skeletal system, nothing soft tissue. This relieves much of what has had me concerned. Regular X-Rays of the spine will be done to monitor the progression of her Scoliosis and to make sure that her top vertebrae is stable. We will be traveling to see Dr. Rimoin every six months. To make things better his office is going to fight the insurance company to cover the medical bills. Josie will also be entered into a research study of patients with her type of dwarfism. Even better news?…Dr. Rimoin’s team has found the affected DNA gene connected with this type, and has published a booklet for parents with children who have Metatropic Dysplasia. I am very much looking forward to receiving that info. There are no books out there with any direction for parents. These kids develop so much differently than “normal” kids. That all sounds so great doesn’t it? Dr. Rimoin also stated that Josie’s skeletal abnormalities are appearing mild at this time!
Please continue to pray for our sweet girl. Back braces and surgeries could be in her future. Pray for the Lord’s will and strength for all of us. I feel so excited about having a very proactive Dr. One who will notice any slight change, and one who knows what the heck he’s doing. So nice. Thank God for all the wisdom and brilliance he bestows upon even the lost.
I didn’t take any pictures of Dr. Rimoin. :( I thought that , “Can I take a picture of you for my blog post?’ seemed a little pycotic…deranged house wife, freak, akward…take your pick. He is easily found if you just type in his name on the net. That is, if you feel a pressing need to see his face. He was very kind and informative btw. Here are some pictures of downtown LA instead. We didn’t get out so sorry for the weird angles and windshield glares. :)
Have a great weekend and love your family in practical ways. I’ll be loving my husband by creating a home sanctuary for him ie. I’ll be cleaning like a mad woman.