Thanks for those of you who have been reading and commenting, it really means a lot to me! Sometimes I feel like the online community are the only ones who understand. I know that's not true, but the EDS community seems so much bigger online. It's so much easier to find others who have been there, done that. So, thank you for helping me feel not so alone!
Not to many big updates here. Bug and I have been practicing her relaxation exercises, and she's done really well with them. She doesn't enjoy them, but said she has been doing some at school "to herself". I figure that means that they must be helping her some, or at least I hope so! We've had her brother practicing with us, since it's a technique that we could all use, and to also keep Bug from always feeling like she is being singled out. We attended our second therapy session and it also went well. In fact, Bug said at the end of the session she was excited to return in two weeks. Yippee! They worked on identifying emotions on faces, talking about what made you feel those different emotions (they are working up to getting her to talk about the Dr's) and they introduced breathing exercises to our relaxation arsenal. It was neat to see her walking up and down the halls blowing bubbles and then chewing gum and blowing gum bubbles. It was really apparent she was working hard on the breathing and exhaling while engaging in other activities. Amazing the things they have thought of to work with kids - she was having fun while learning to breath properly during other activities. It really reinforced the decision to make the drive to see someone who deals with children and Dr. phobias.
Nothing new is happening at school. We finished our first quarter and Bug got pretty much exceeding standards on everything. She is still doing a great job at making it through the day, so hopefully things have improved for her and our winter will be better too!
One thing that I just can't figure out is why her rings are still not fitting. Not the new ones from August, or the ones from a couple of weeks ago. Out of all 20 that were made, only 4 are fitting. Still, even with the weather cooling down some. All fit at the time they were made, and several hours after. The only thing I can figure is that her joints are actually swollen, not just her fingers. I'm not giving up on these recent splints yet (we've just been wearing less splints) - I'm going to wait and see what happens when it gets a bit colder. If they still don't fit, I'll call and see the hospital OT again. At this rate, I'm tempted to see about having the silver ones done, as everyone says you can adjust the sizing about 1/2 size up to accommodate swelling. Our rings have cost thousands of dollars this fall already ( I think $3000 between both fittings) so I can't imagine the silver ones being that off. Maybe we should start with one or two silver ones and see if that works and go from there... I'm thinking out loud. :)
Bug continues her swimming lessons weekly now, and also vocals. She is enjoying both, and we seem to have them spaced out enough that they are not tiring her out. She seems really happy and for that I am thankful.
Thanks again for your support and feedback!
It's time to finally come clean, and admit I've been avoiding this blog and a lot of other things lately. I just needed a period of denial. I think (hope) I'm over it now. ;)
I can't even say what started it. Was it the strain constant medical problems has on my marriage? Being tired of having to advocate at school? Being sick of all the medical appointments? The fact that Bug has now developed major anxiety to the point where we can't walk into a Dr office without a meltdown? I just don't know, I think it's a bit of everything.
Here's a little of what has been going on. Bug had her endoscopy, where it was found she does still have inflammation in the stomach and esophagus. This was based on the biopsies done. No infections, they did check for that. Just good old GERD. We changed her to generic prilosac since my insurance wouldn't cover nexium, and we are nearing the end of our first bottle. She seems better - so I'm crossing my fingers. He told me we have one more medication option and then we'd have to do another endoscopy and consider her for surgery. Obviously, no one wants that, so we are hoping this medication does what we need it to. The appointment was so traumatic, lets just say they had to bump our appointment back 3 hours because she was such a basket case. Then after the scope she vomited for 4 hours, poor kid!
The following week we went to our genetics appointment for our two year follow-up. Bug ran into the corner of the room and started crying hysterically as soon as the Dr. asked her to put a gown on. The funny thing is she's never worn a gown before, not even for the surgery. But it was a trigger for her. We told her she didn't have to do it, but she still wouldn't stop crying until the Dr left. So we learned very little. They did tell me her diagnosis stays the same, and that just watching her walk to the bathroom they could see her knees were hyper-extending way too much. They want me to start bracing them, but until we get this Dr phobia under control I'm holding off. They recommended she see a child psychologist who works with kids who have long term medical issues to try to get past this phobia ASAP. I made the appointment.
A week after that we had our allergist appointment, where we were supposed to have food allergy testing. I had requested a blood draw be done during our endoscopy but the allergy nurse told me we had to do the prick test. Had I known Bug would develop this Dr. anxiety, I would have insisted, but I had no idea that would happen. So, we show up for the appointment, and she goes into the corner again screaming and crying to take her home. The allergy nurse just said "forget it" and my allergist came in and said let's just postpone it again. He gave us a script for an epi-pen in the meantime, which he said we should have anyway because her cat allergies are so severe.
Another week goes by and we have our psychology appointment. They want to see Bug every other week for at least 4 sessions. They are going to work on ways to deal with the anxiety she is having, and once they teach her some coping skills a behaviorist will come and work on the defiant aspect. (they know the defiance is related to the anxiety, but even if she is anxious if we have to see a Dr we have to be able to have her looked at) The final goal is to have her see one of our Dr's at the hospital for an appointment (even if it's pretend) and they'll come and walk her through it. I think they have a good game plan, driving out there will be worth it, but I am not sold on her getting over this in 4 appointments. I hope that is the case, but this phobia hit so hard and fast... In the meantime, I'm hoping nothing happens where we need to see the Dr for anything, because there is no way locally they would know how to deal with this.
After that appointment, we went and had another full set of rings made. The first set still wasn't working out for us. This second set the jury is still out on... I just can't believe how much her fingers swell and contract! They had the room warmed up to 76, but the difference must be in part due to the morning vs late day swelling. That is the only other thing I can come up with.
To add to my stress, I got an e-mail from our OT asking me to start working with Bug on typing once a week at home. The reason being that her typing is currently slower than where she was at the end of last year. Why? Because she hasn't used her iBook at all since school started. When the OT tested her at the beginning of school, her typing speed had greatly increased over the end of last year, from the constant practice we did all summer. I am happy she isn't having the hand fatigue right now to *need* to use the iBook, but they should be having her use it some to keep the skills up. Why the OT's can't put that into her school schedule is beyond me - she is tired at home, we have all these appointments and relaxation exercises, and she needs to have some time to be a kid too. I could understand if she needed practice at home in addition to school, but why only at home I just don't get?!?! Especially since her iBook lives at school - she'd be using a completely different system at home... It just irks me, this is the kind of stuff that adds so much to my stress level. We had a meeting about technology at the beginning of the school year. This shouldn't be an issue. Grrrr... I worry that with winter coming (it's been so hot here, not even fall weather until this week) that there is a decent chance she will suddenly start having joint pain and more fatigue. Being familiar with her iBook and all set up can make a huge difference. But it's something that should be in place *before* the problems begin, not rushing afterwards. I digress ...
On a positive note - Bug is happy at home. She currently is not having joint pains, and has only come home early from school twice. Her stomach medicine is helping, and hopefully now that we stopped her vitamins it will stop hurting completely. She cannot tolerate vitamin c - even when it is in her multi-vitamins. From what I've read it is very uncommon to be allergic to vitamin C, but there are lots of people who have very similar problems to my daughter from it. A sensitivity. It is one of the things I wanted to talk to the allergist more about, but couldn't. While I know she has GERD, a food allergy/sensitivity would help explain why the medications are not enough. I know just since stopping the multi-vitamins there's been a big improvement, so I know there is something to this...
Anyway, now you all know why this blog hasn't been updated in a long time. :) Hopefully next time I'll be more cheerful again!