So many doctor appointments lately. Getting to a place where our needs are being listened to and finally met is great, but it sure has turned out to mean a lot of doctors and appointments. The latest two were an allergist appointment for Joshua and a physiatrist for me.
The latter went simple enough. I left with encouragement that they did indeed understand EDS and what I was up against. I was also listened to about my weak shoulder (it doesn’t like to stay in it’s joint anymore ever since the injury with a walker after my ankle surgery). I was given a prescription for a medicine the doc said would take care of the pain from all the nerve damage I was dealing with and a script for specialized PT services to help build up my strength around my joints. Bad news is, when I went to pick up the medicine, the pharmacist said that medicaid refused to cover it so I can’t have it unless my doctor fights back and wins. Will be calling in tomorrow to the doc to see what she wants to do.
As for Joshua and the allergist, we got some good news and some bad news. We also have to follow up with blood work test to check on a few more items. Good news, he didn’t react to over half the things I thought he was allergic to during the allergy test. Bad news… well really the bad news is two fold. 1) He still reacts when he eats or comes in contact with those foods, and he reacts badly. That means he is either allergic to a component (part of why we have to get the blood work done) or it isn’t allergy issues that we’re dealing with at all but rather an autoimmune disease or Mast Cell Activation disorder… Not cool. Poor Joshy. :(
He did show up allergic to some things though during the test. Most of which surprised me. For one, he showed up highly allergic to dust mites, sage brush, and some weed we have in abundance out here (can’t remember the name right now). He also turned out to be allergic to dog and cat dander. :/ The scariest and most confusing one though was peanuts.
Joshua started out in life reacting badly whenever he came in contact with peanuts, but when he was around 5 he stopped reacting all together and has since eaten a lot of peanut butter crackers and peanut butter and jelly sandwiches. He never showed any signs of reacting to those things though when he ate them. The doctor is going to be adding a special marker to the blood work to double check the peanut allergy because of that and said to not withhold the peanut butter yet since there hasn’t been outward signs of reaction.
As for David, well let’s just say he is still being very much him. Sometimes that’s a good thing, and sometimes it makes him quite the handful, but I still love him to pieces. Sometimes I just have to remind myself it is all worth it while I am trying to not pull my hair out in frustration. ;) lol
Been an adventurous Sunday evening to say the least. Got to go to church for one of their evening services, heard a great (and comforting) message while the boys had fun doing crafts and learning about Noah’s ark. Then the dinner crew saved 3 hotdogs for the boys and me so we could have dinner there after service (they serve it every sunday but sometimes they run out before I can get the boys out of the classroom and through the line).
Then David escaped out through a door no one realized had an exit that led outside so a search had to be started for him. That was fun. NOT. lol Afterwards though, some people gathered outside to watch the moon eclipse and a lady that had befriended me and the boys invited us to come watch too and everyone helped me keep David safe while we were out there so we could enjoy the experience. One of the men there knew a lot about the science behind it all so we even got to listen to some pretty cool explanations as to why and how the red color was formed and other neat things. :) David really loved the part where the moon started turning red, but once he found a dirt pile, he dropped to the ground and just dug and played in the dirt for the rest of the time; letting it run through his fingers and enjoying the feel of it as he dug into it with his hands.
When we got home, David got on the piano and started practicing some songs out of the beginners book of hymnals for the first time and did pretty good. He was excited to hear himself succeed at playing the songs he always enjoys hearing me play. I was really proud of him. ^_^ After piano time, I took the kids back out to get one more look at the moon before the eclipse completely ended and the boys really enjoyed it. :) On the way back in though, David took a sudden turn to the left and disappeared into the darkness. Once again, I found myself searching for him and calling out his name to no avail.
Thankfully, some neighbors were out too at the time and they saw the direction he ran. At some point he managed to sneak around to the opposite end of the grounds because when he was spotted again, he was back in the yard area by our apartment and running inside. I have to admit I was so furious with him. I know he doesn’t mean to cause trouble and his running is more of an impulse thing than anything else, but man it scares me so badly and I would give just about anything to not have to worry about him doing that anymore.
Going to be taking it pretty easy for the rest of the night. Finally have a Door Guardian lock in place on the front door so I can keep David in and I won’t be needing to go outside again for anything until morning so we should be good for the night.
Did anyone else get a chance to see the moon eclipse tonight? I would love to hear about your experiences too. :)
The following video was taken after we all got back from the boats and David started dancing to the music. ^_^ My boy sure does love music and dance. :)
David’s handwriting is starting to improve again! :D (He can’t read or spell yet, so I write things down for him to copy for writing practice)
The boys and I had a great day today! Between getting to go to church (twice as they boys love it there so much lol), finding out we have a mobile library that makes stops at the church now in the mornings (with a really kind librarian that runs it too ^_^), and getting a chance to drive out into the mountains (I love living so close to them now :D ) the day couldn’t get much better. :)
We also got to go exploring for a little bit yesterday evening around our new town. Most all of the shops were closed by the time we started our little adventure (they close sooo early around here), but we still managed to find a few treasures. :) One of my favorites was a craft store that offers classes, sells supplies, and offers a place to paint ceramics that they will glaze and fire up for you afterwards. :) My other favorite was a Christian sweets shop with some really good fudge and icecream. Get this though, the fudge is made with potatoes! Yeah, and you can’t tell it either when eating it. lol
School season is getting ready to start back up officially for us too around here and I am seriously missing all my precious book shelves now as a result. It’s hard to run school out of boxes. lol
The boys are currently upstairs playing with their trains (and David apparently has a straw again…. he likes to spin them around and around in his hands and pretend they’re train brakes). I am going to enjoy having the downstairs to myself for a little bit and try and get some stuff done that I’ve been putting off. lol
Had quite the adventurous weekend, between my front door breaking again and causing my kids and I to get locked out in the heat for hours, my son breaking off the toilet handle when attempting to flush it, and having my GPS system keep trying to take me in a completely opposite direction than where I needed to go on a major trip (thank God for Google maps and for me being uneasy enough before the trip that i took the time to look it up on there for backup directions).
The highlights were the boys got to go to a free Autism friendly carnival event. They also got to go fishing on a real boat on a real lake (in a reservoir technically) and with a great boat captain thanks to a program that makes it possible to do exactly that for disabled kids. :) Also, I got in a LOT of needed rest. Not by choice as much as I couldn’t wake up because I was that tired. haha Long road trips didn’t use to phase me, but they sure do now. lol We also had another great weekend at the church. They are truly so great there with my kids. Couldn’t be more thankful for the teaching either. We got their late due to the door fiasco mentioned above, but the sunday school teachers let my kids stay for the second round so I could go back and hear the whole sermon/Bible lesson.
The best part of the weekend though? An abandoned puppy. Someone had dropped the poor girl off in my neighbor’s enclosed porch about 4am (I know because I was up doing laundry when the dog seemed to appear out of nowhere). When she didn’t have the ability to get it out again, she came and got me for help. By God’s sweet grace, the puppy wasn’t too heavy for me to lift and was also a real sweetie and fun loving pup. Thankfully around here, you can call 911 for help on something like this and they will actually help the dog, not put it down, so that’s what my neighbor did.
While we waited though, I got to have time with the puppy. Playing, cuddling, and just enjoying time together out on the lawn. It did my heart so much good to be around a dog again like that. I miss having a dog in my life so badly. I would have given just about anything to have been able to just keep the one, but anyone who knows me knows I couldn’t do that. Not good enough at training to take in a puppy (she turned out to be just 8 weeks old). Still, the memories have turned into a small treasure that I hold close and that still makes me smile. :) Hindsight makes me wish I had thought to get pictures.
LOL Sometimes, calling something by it’s definition can be more fun. ;)
Last night and this morning was the peak of this year’s Perseid meteor shower. Sometimes it pays to have kids that don’t sleep well at night. It especially pays to not have anywhere to be in the morning too. ;) We got to head out to a little park just a few blocks from our apartment, set out our chairs, and proceeded to watch for meteorites shooting across the sky. I lost count after 10. ^_^ The boys really enjoyed it too. We’ve been learning about stars, meteors, and meteorites for a little while now so they were pretty excited to be taken on such a cool adventure. And in the middle of the night no less! Of course that was their favorite part at first. ;) lol
In between sightings, we talked about everything from constellations, to meteors and meteorites, and God and His faithfulness and the personal miracles He’s done in our lives. :) David was a bit frustrating to coral at times of course, but I wouldn’t trade this night for anything. ^_^ For those of you reading this while it’s still dark, go out and take a peak. We wish you the best of luck in seeing some. ^_^
No fear! I seriously mean that when I say it about David! NO STINKING FEAR! Uggh!
This is where I found him after his new horse teacher decided I wasn’t being serious with my instructions to not let him out of her sight for even a few seconds…
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. ;)