Birthday present to myself. I’m crafting again. ^_^ I found this old shelf at my favorite thrift shop and was able to get it for just $5. Cleaned it up, dug out my paints, and am now in the process of giving it a fresh paint job (with brighter colors of course 😉 lol). Can’t wait until I am finished and can share the final product with you all. ^_^
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. 🙂
Have to admit, I can’t sleep and here I am up on my own and I don’t know what to do with myself. lol Yep, the boys actually went down for me a couple hours ago. Had to keep putting them back in bed over and over and over… (you get the idea lol ) but I got them down. And here I am… still wide awake! Go figure right? haha
Life has really been changing a LOT for me lately. So many new things, so many mind blowing blessings. I have my struggles still too of course, but they truly seem like nothing when held up against all the blessings that have been coming through for me and my family in these last few months.
A compassionate and knowledgeable doctor and medical team that is able to help us with all our health needs.
A local community of Autism families, where the boys and I can go and just be ourselves, quirks and all, without judgement.
The local library even welcomed my kids with open arms. Even with David getting into the books on hold section, running off repeatedly, and repeatedly forgetting to keep quiet. THAT’s something pretty special right there. lol
And now we even have a church that welcomes us. I have longed for that for so very long. And the children’s minister proved yesterday that my boys really were welcome, wanted, and understood. She had asked me if there was anything David really liked so I mentioned his obsession with trains. When we showed up for church, she showed up with a box of trains and tracks, brought in specifically for David to play with. And she didn’t even bat an eye when he lost control with excitement and started flapping and spinning and shouting his happiness. ^_^
There is so much more than even what I’ve listed here, and I couldn’t be more grateful to the One behind it all. As my sons learned in church yesterday, “Being rich is not about money or possessions. To be truly rich is to be rich in the blessings that are less tangible: love, family, friendship, and most of all Jesus.” I wholeheartedly agree with that. To the world I may look poor and broken, but in His eyes I am precious and priceless and my life is truly richly blessed. ❤
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 🙂
Cindi here. Ehlers-Danlos Syndrome (EDS) has taken me down again and quite forcefully this time. It will not win though as my new doctors are already on the case and are working at stabilizing me from the blow. It might be a week or two before I can get back to posting regularly though as I will be spending most of my energy and time trying to deal with the EDS and being there for my kids. Thank-you for your patience and understanding. I will start posting again as soon as I can. I still have pictures to share from last Saturday when we got to meet a local Autism group and other families. 😉
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 🙂