Frustration!!!!!!

It's been two weeks now since we went to see the geneticist. Now that I am not so mad anymore I can explain my visit with her. I have never had a good visit with this Dr. She never not even to this day explained to me what was wrong with Keelie. Thankfully, I was able to get Keelie in the research in Kentucky and get some answers. When we saw her a couple of weeks ago she was very short and almost argumentative. She tried to tell me Keelie has the joint laxity and hypotonia because I have joint laxity. She compared her to me. Really? She looked at my fingers to see how far back they would go. She said my fingers were loose, they shouldn't go back that far. Hey Dr. lady my fingers have normal range of motion. Trust me, I know. She also looked at some of my scars. I tried to tell her but she was determined that Keelie had joint laxity because i have joint laxity. So she told me Keelie has Ehlers-Danlos syndrome. Just what I wanted to hear. Another diagnosis for Keelie. That would be 3 now. I didn't believe it. Dr. if you would just read the article and Keelie's reports from Kentucky then maybe you would understand more about Keelie's disorder. She was just trying to grasp at straws because she is too busy or too lazy to try to read up on Keelie. Remember, she called me and told me to go to the website rarechromo.org to read all about Keelie's disorder. Her words were, "it is a beautiful website. You can read it and understand Keelie's disorder better.". Thanks.....I really wanted to research my daughters disorder but pay you the big bucks to tell me how to do it. Ok, off my soapbox. As we were about to leave, she had to print out a leaflet for me on Ehlers-Danlos syndrome for me to read and see what I thought. Once again, who's the doctor here. She really said for me to read and see what I thought. Well, I did read it and I don't think it sounds like Keelie. So to answer any questions I emailed the Kentucky Dr. She doesn't know anybody else with the duplication with Ehlers-Danlos syndrome.

My thoughts.......the geneticist in Memphis doesn't know anything about Keelie's disorder so she just tries to come up with something and/or she doesn't like the fact that Keelie is in the research in Kentucky. This was a wasted trip. I learned absolutely nothing.

Now a little bit on the brace journey. And what a journey it has been. We went Thursday to get the braces. Yippee.....wrong. First, they only sent one brace. What? One brace. Ugh! Second, if you have followed remember she was measured in late October so guess what? The one brace that was sent is TOO SMALL. Well, duh. It's been 4 months. So back to the factory they go and we continue to wait. Supposedly, the braces will be at therapy Tuesday when we go. The brace guy instructed us so he was going to drop ship them and follow up with us next time he comes to Starkville.

Lastly, I have a prayer request. I'm a little hesitant putting this on here but I do believe in the power of prayer. Ryland is not meeting his milestones and the pediatrician wants him tested. Some things Ryland does reminds us of Keelie so it's smart to go ahead and do the genetics test. If for nothing else, for peace of mind. Please pray all comes out normal. I'm really not wanting to face this with 2 kids. God doesn't give us more than we can handle. The appointment is not until June but I have a conflict so I am changing it. Hopefully, I can get a sooner date.

Thanks for following and for praying. You all mean so much to us all.