Morning everyone! Guess what? I actually got to sleep last night! Whoo hoo! lol David lasted for almost two weeks this round! Man will I be grateful when I finally can put a safety block on our door again.
Had an appointment with a new cardiologist yesterday too. They’re putting me on a heart monitor and doing a new echo on my heart to make sure I am truly stable. Been pretty weak again after a scary episode that took me down about a month ago. Depending on the results that come back, I will either be released with some instructions to help keep things stable or I will be starting discussions with the doctor about medications or other interventions. Can’t have my heart refusing to cooperate on me again like that.
In the meantime, the boys and I are starting to get used to our new town and neighborhood and are starting to get connected, slowly but surely. The boys and I are also getting connected with the EDS doctors we’ve been needing. Oddly enough though, my cardiologist (of all people) asked about genetic testing and when I told her of the mutated gene that no-one could explain that showed up on both of my boys’ reports she told me to make sure I told my primary care doc and have him get us in with the EDS geneticist specialists that will be coming through Boise soon. She thinks they may have answers to the mystery gene that might in turn provide some answers for my family. Worth a try in my book. : )
Hope this finds you all having a good morning! Please say hi in the comments. Would love to hear from you. 🙂
Oops! I allowed myself to get so busy I forgot about the post positive challenge! I think I missed the technical day but figure better late than never. 😉 Please feel free to join me by listing your own 10 positive things. It does a heart good to take a break and sit back long enough to remember the things that makes you smile. ^_^
10 positive things in my life right now
1) Doctors who understand my EDS
2) A brace specialist who will be making me a new knee/leg brace soon
3) Beautiful nature at my doorstep
4) Mountains within view on most of my drives
5) A group of other Autism moms and families that I can hang out with locally
6) Those colorful crates being sold at walmart right now (they’re making a fun shelf alternative 😉 )
7) I found the painting from Officer Rhodes and the Maize police officers!!!! 😀 😀 😀
8) Being able to hang some pictures and paintings up finally
9) Cuddles from my boys when they are having calm moments
10) The blessing of laughter throughout the day, even on the hard ones
and of course, none of this would be possible without the ultimate blessing, a loving God and Father in Heaven who cares about even the little things 🙂
Had a day full of blessings today! ^_^ Met with the bracing specialist today that our new primary care set up for me. He was awesome! Patient and kind with the boys, knowledgeable about EDS and even my other condition that has my leg all twisted up on the right, and very knowledgeable about braces. 🙂
Bad news is, he took one look at my current one and basically told me the place that did it for me cheaped out on me and used things that are now considered obsolete and then didn’t even make it right. He said there are extensive errors that would need to be addressed and repaired before the brace I have would work right.
GOOD NEWS is that he suggested tarting from scratch and building me a custom one that will truly hold me up and together like I need. One that will not allow me to keep dislocating inside the brace (my current one allows that and simply lets me “lock” myself into a standing position to try and prevent a fall). One that will secure both my knee and my ankle in a way that won’t sacrifice comfort for safety. He even is going to make it less of an eye sore for me. Said that having a bad leg shouldn’t mean I am forced to advertise it from a mile off. I couldn’t help but laugh at that one. lol 🙂
Best news of all?? I asked if all this would be covered by medicaid because I just don’t have the funds to pay for bracing out of pocket. He replied by saying there are forms needed from my primary and certain things that need to be documented, but he works closely with my doctor a lot and knows it will not be a problem. He then put together some papers that details exactly what needs to be done, including which form to fill out, wording that the insurance company will want to see, and details of the kind of documentation needed and how to include it. 😀 Then, as if all this wasn’t enough, he took my current brace and fixed some of the more pressing issues for me so it wouldn’t keep injuring me while I am waiting for the new one to come in. 😀
All this has a double fold blessing for me. 1) I am finally getting the help I have needed for all these years. There is even hope now of regaining some strength and stability! 2) The doctor who is arranging all this for me, is meeting with my children in two weeks! And he’s already prepared to start getting the same kind of help in place for them. ^_^
Thank-you to all who helped me get my family to Idaho and those that are continuing to pray for us. It is making a huge difference in our lives already and I couldn’t be more grateful. ❤ On a side note, we also are starting to see the connections come through on the Autism side of things too. We will be going to an Autism family cookout THIS Saturday! A chance to meet other families, get more information on local help and services, and there will even be a group there that will be teaching the kids how to fish! David and Joshua are really excited about that. lol 🙂
First of all, I would like to apologize for the lack of updates over here. I tend to write most often at my main blog, An Autism Diary, as David is most often my inspiration for writing (whether directly or indirectly). I do however have great news! We made it to Idaho! We had some adventures on the way here and some trials over the last couple of weeks, but things are definitely starting to look up as a whole. 🙂 Starting with better medical care and a doctor who understands Ehlers-Danlos Syndrome! 🙂
I met the new doctor, with kids at my side, on Monday and was so overwhelmed by how much he knew and understood without me having to educate him (such a big difference for me) and at how willing and ready he was to help me. When I asked if he knew of a pediatrician who could help the boys as well, he told me he was a family practitioner and was willing to help my whole family. 🙂 By the time I walked out of that appointment, I was equipped with a doctor who believed me, understood my condition, a script to get my leg brace repaired, and scripts to help take the edge off my pain so I could regain some quality of life. Plus, I have a follow up appointment in just a few weeks, where connections will be made to the specialists I need to manage my symptoms, strengthen my body, and generally help me gain and maintain some stability in this battle that EDS has waged against me.
I really like our new doctor and am beyond grateful for the gift of making it to Idaho so that this partnership could be possible. My days are still full of injuries and struggles common to EDSers, but now I finally am getting the tools needed to fight back, and fight back well. Also, my boys are going to finally have the same and more. They have a fighting chance for a higher quality future than what I was able to give them before. I couldn’t be more grateful for that. 🙂
My family has an announcement to make and also a call for help. The Ehlers-Danlos Syndrome that all three of us now are battling has gotten to the point it can’t and won’t be ignored any longer. The problem with that though is that we don’t have access to the kind of doctors we need who have the kind of knowledge and experience needed to help us.
So, we are moving. We’ve found an area in Idaho with the medical help, services, and support we seriously need and I’ve gotten notice of our acceptance and our new address and everything. I am finishing up the packing and final paperwork as we speak. The move is scheduled for the end of May, but we are still short on our efforts to raise the needed funds to make it possible.
If there is any way you can help, please accept my sincere gratitude and thanks. No amount is too small, and prayers and sharing are truly appreciated as well. Whatever you can do to help me get our family to Idaho would be greatly appreciated. Thank-you from the bottom of my heart.