I am going to be lazy and just post here what I sent to one of our EDS support groups. I am just not feeling like writing it all over again right now. :) I hope it makes sense! Obviously there are a few things that were already addressed in the blog, but there's also some stuff that wasn't. The PT part is one that is now outdated, since insurance is telling us no more for the ankle... Anyway, hopefully this fills in some blanks!

----

Well... it's been quite a month!

First of all, my daughter made it through the community musical. It was incredibly taxing on her at times, there were several nights they had practice that she was in pain. But she just sat down and limited her participation to what she felt she could do, and made it through. I was proud of her for that, but also caught myself in tears several times because I kept thinking "it isn't fair that she can't be up on her feet like all of the other kids!" Needless to say, I kept those moments brief and to myself. :) She did an awesome job in the musical, and almost 4 months of hard work and practice came to a sudden end.

One thing I did do is buy her a Kajeet cell phone. It's a company that caters to kids. I did it because she'll be 9 in a month, and I'm starting to see her pull back from some activities because she's afraid of being without me. We're at a point now where her peers are going to notice. So - instead of her being the "baby", I decided to get her a cell phone so she can call me should she need anything, and I can be there in less than 5 minutes. It brought her (and ok, me too!) and incredible amount of peace of mind. I wish I had done it sooner! The phone was a great deal - $90 at Amazon with 100 non-expiring minutes, and 1 year of GPS location service on it. I also love all of the parental control features, but since her phone is only for emergency use right now we don't need them. That said, when she is older and allowed to use her phone for leisure too I am excited that I can control so many aspects of when she uses it.

Medically we are still in PT. We are doing every other week right now but I'm not sure if we're keeping it that way or increasing it some. I'm waiting to hear back from the PT on that and some other questions. Her new ankle brace is still comfortable, although the heat makes it itch and she isn't a big fan of that. PT we're still doing water therapy and while I'm sure it helps we've had no huge improvements lately.

We saw the GI - and they think that Bug has been having abdominal migraines. It really fits - and we've had success treating her stomach pain with ibuprofen since given that idea. Wouldn't it be amazing if this is the missing piece we've spent the last 3 years looking for? Why she was having this severe, breakthough pain that didn't respond to any acid blockers? Anyway, there's more to the story. We also met with her new Pedi (who is also her Orthopedist) and on our list was headaches. I asked him if Bug could be having migraines in additional to abdominal migraines because sometimes she has the headaches first, then stomach aches. (I have found this out while keeping notes the last few weeks) He said absolutely, she could be having both. I mentioned that I had read most kids outgrow abdominal migraines around 9, but start getting the other kind then. He said this is true, so the good news is hopefully some of the stomach pains will start to ease up before too long. However I know there are some people who continue to have stomach pains with migraines. So, maybe the pain isn't quite as bad?????

He recommended that we continue with the ibuprofen for now, as long as it is working, but that if it doesn't we do have other options and he can manage that for us. He looked at the script the GI gave us as our second med to try and agreed with what I suspected, which is that it's to treat IBS and was just another shot at eliminating things Bug doesn't have to figure out what she does. He felt that we shouldn't even try that, as the abdominal migraines and migraines seem to be related - so to call him if the ibuprofen doesn't work.

We also got to ask him about her ankle brace, as Bug has been very concerned about when she will get it off. I didn't want to commit to anything because I wasn't 100% sure either, so she asked him. Dr. Phillips told her that he wasn't sure, it depended on many things. One of those is how much she works at home on her PT exercises. Another is how her body reacts to the PT. He did tell her that even if it was strong enough to not wear it all of the time she would probably still need it for gym class and activities, to make sure she didn't hurt it again. In the meantime, he let her know if she was relaxing around the house she didn't have to wear it. (which we already were doing) She seemed to deal well with all of that. I asked about PT, and how often we should be going, and for how long. I told him it seems like there is always something needing work. For example, that day her other foot was "feeling like it was going to fall off" to the point she didn't want to walk around and shop like we usually do. He checked it, and said it was fine, just really loose. PT would benefit it too. So - the answer to the PT question was 1) what will your insurance pay for and 2) you go until it interferes in your quality of life and then you back off. Ummm - ok, so I know in some ways that is a good answer, but in others I'm still left scratching my head. LOL I guess we just go until we are sick of it? Or the PT is sick of us? Our PT order doesn't expire for a year, and has no limits on how often we can go. Weird - but good, right?

What else... Her allergies are acting up, so she's back on nasal spray. He is going to manage her allergies/asthma from now on too unless something weird crops up. No more super mean allergy Dr. - woo-hoo! Also, her therapist moved to MI. :( But, she put Bug in touch with a new one and Bug seems to like her. They set some goals to continue working on based on what she was doing with her old therapist. We haven't met with her solo yet (she met with Bug and her old dr. together) but I need to get an appointment set-up soon so we can take advantage of summer, ie. no school!

Bug did have another dental appointment - she didn't panic AT ALL! On top of that, she needed sealants and had a small cavity which we had to go back a week later to have done. She also made it through that appointment without ANY MELTDOWN! I was on cloud nine! All of the therapy has worked!!!!!!!!!!!!!!!!!!!!! Our last cavity was a disaster - this one was a breeze. Bug even said afterward that she couldn't believe she was so worried about it before, because it wasn't bad at all. WOW! It might also have helped that she didn't need shots with it, but still, I've had them done without Novocaine before and it still isn't discomfort free. It was such a good feeling knowing that we do not have to fear the dentist anymore! She has survived cleaning, fluoride, and the dreaded cavity/filling. I am so happy and proud!

Sorry for such a long update, but it just seems like we've had a lot of things going on lately. I am just now starting to feel like it's summer. We've had so many appointments my head was starting to spin - but I think we're pretty much done now for awhile, and, I think we've made some serious progress!

I cannot believe that I have not posted since August - but I just didn't feel like blogging. Then suddenly today I felt like sharing again, so here I am.

Let's see, since my last post Bug turned 8 (WOW - she was diagnosed at 5), she started 3rd grade, we did lots of fun family stuff and she's now completed her first quarter at school. Report cards and teacher conferences will be next week. Gosh, time flies!

She is doing well in school. The PT and OT are still seeing her although I'm not sure how much. She is involved in Girl Scouts, taking vocal lessons, and she is about to finish her "cheerleading" class. It is very low key, no jumping or gymnastics type of stuff. Just chanting and clapping. She is asking to take swim lessons again, but she also wants to go to the after-school program at church, so I just don't know how we could fit all of that in! I am happy that she is involved and finding activities that she enjoys and are healthy for her.

Now the not as fun stuff. She sprained her ankle in gym class a week ago, by tripping on the floor. Whoops! :) I think most EDS'ers see the humor in that. EDS'ers tend to be a bit less coordinated than the general population. So, she's in an air cast splint until the end of this week. It seems to be healing up nicely and she is now walking "normally" on it again.

As some of you know we're having some issues with her speaking up for herself and her needs. She didn't ask for any ice when she injured herself, even though she was hopping around all day at school. The teachers thought she was fine because she didn't complain, which she wasn't. I did speak to her main teacher the next day briefly and let her know that Bug isn't a complainer, but I also spoke to my daughter and stressed it was up to her to take care of her needs. That she should always ice any injury. I thought she got it, but then two days later she had another incident.

Bug came home and was telling me how badly she had to go to the bathroom at school, but that she couldn't because she'd loose a "coupon". I asked if it was close to recess (when they wouldn't loose one) and she said no, she had to wait a long time. Upon further questioning, I found out that she didn't even ask the teacher to go, she was just assuming that because that is what the teacher had said to the class in general at the beginning of the school year that it also applied to her. I explained that she could go whenever she wanted because she has a Dr. note, and I asked if she wanted me to talk to her teacher. She got really upset and said NO!

So - I think we have a bit of an issue right now with not wanting to draw attention to herself, or wanting to make herself any more different than her peers. I suppose I knew it would happen at some point, but boy, it stinks. I can't follow her around everywhere making sure she gets ice packs and asks to go to the bathroom, but I finally have her off of miralax and I don't want to end up back on it. Ugh! Anyway, we are going to start going back to her therapist again and I am going to mention this and see what her thoughts are. I don't want to make a huge deal out of it but at the same time I want the door to be opened so that Bug can know she has someone to talk to about this stuff (besides me) as she gets older. I hate having to go to therapy, but at the same time I know if we don't deal with the medical anxiety now or the being "different" now there is a good chance it will only get worse as she gets older. But the having to leave school early and driving over an hour just for therapy sucks, even though I really like her therapist. Wahhh, listen to me complain. I should just be thankful we have a good therapist, right?

We are also in the process of trying to find acceptable clothes for winter, which isn't easy when you are looking for items that are easy to get over your head, pants without zippers or buttons, coats with easy zippers, etc. Plus, it has to be "trendy" because we're at that age. ;) I have managed to get two pairs of jeans that have no zippers or buttons which are very trendy (complete with sparkles on the pockets) but that's been it so far! I am going searching again tomorrow and hope to find some more clothes. If I can't she'll end up with several pairs of the same thing, which is better than not having any jeans. We're tired of living in sports pants/sweats.

So, overall things are going well. Sometime in the next month we should be having our IEP meeting and I'll get to hear what the plans are for the upcoming year. Should be fun, right???

Oh - I almost forgot! We see our new GI on Friday, so cross your fingers we all get along! Ok, I'm done now - for real! I'll try to update again soon!

I thought I'd pop in and give a small update since it's been a couple of weeks. Things are moving along nicely for summer. We've been practicing our OT stuff, hitting the pool, and having lots of family time. We've rented several games for the Wii, the interactive kind. Bug really enjoyed Carnival Games, and Playground Sports. I just have to say again how nice it is for her to be able to "play" games that she can't play in real life!

Currently we are up in the Chicago suburbs visiting her Grandparents. Last night we all went to see the Beach Boys at an outdoor concert. It was so nice, because we had lawn seats (meaning you show-up, claim a section of lawn, and put our your chairs, table, picnic table, etc) so Bug could stretch out and move as she pleased. I cannot imagine her being comfortable in normal seating, but she had a great time and was happy the whole 4 hours we spent there. I'm sure it helped that the kids who live next door to Grandma were in the spot next to us! :)

While we're here we are also planning to hit Milwaukee for an afternoon, and then head into Chicago another day to see the musical Willie Waunka and the Chocolate Factory. Combine that with the massive amount of shopping we've been doing and it makes for one fun trip!

Medical updates...
We got our allergy appointments rescheduled at the University of Iowa. We were supposed to see several people in the middle of the flood. I still need to make a couple more appointments but I'm excited to have allergy scheduled because Bug is asking for food allergy tests. She's been off of dairy most of the summer, and it has really helped with the stomach aches. The thing is, she's not getting lower stomach cramps, loose stools, or gas when she does have dairy. But she gets horrible stomach pain. Allergy? Lactose intolerance? Who knows... Nothing is ever clear cut and "by the book" around here. But she wants the allergy tests to see if she really can't have milk or not, so I'm jumping on it. I'm crossing my fingers she actually goes through with it when we get there. If she does, not only do I hope it provides some insight as to why nothing seems to help her stomach, but I also hope it is another leap forward with her anxiety. I sure do hate all of these little "unknown" pieces of Ehlers-Danlos Syndrome!

Another thing going on is she's had shoulder problems twice in the last two weeks. Once she was sitting on the shoulder and moved slightly, causing horrible pain/discomfort. She wouldn't even allow me to touch her to try to help. This morning she woke-up with something similar going on. It's been about an hour now and she still is hurting. Right now she's trying heat on it and she says it helps a little. Of course I forgot the childrens Advil. I think we'll have to run out and get some in a bit. I packed everything BUT advil. Figures!

I know I'm forgetting stuff, but I'm signing off and spending time with my family. I'll check-in later!

Ok - warning, this is mostly for my medical notes, but as usual, you never know when it might be useful to someone else! :) Plus, I am finding going back in my own blog to be very helpful in tracking how Bug's symptoms have played out over the last 1.5 years.

First off, Bug missed her stomach medication on the 6th. She had it again on the 7th, and has been on it normally since. Starting on the 6th she started having sleeping problems because of her tummy hurting. I figured it was reflux, but wasn't sure if it might be stress due to her upcoming GI appointment.

The stomach problems have not stopped since, although I personally noticed that she was falling asleep more easily again around the 14th. Her sleeping patterns have not returned to normal, she is still taking a long time to get to sleep but that would make it around 11 vs the 2:00am that was happening the week before.

We saw our GI Tuesday and Bug did AWESOME! She had no anxiety during the appointment, which was such a relief to me. We didn't do anything invasive, but if you'll recall she wouldn't even get her weight taken in the fall. So this was a huge step forward for her. :)

Since seeing the GI, she is still complaining about her stomach hurting and is still having problems falling asleep. In the mornings she is telling me she hasn't been sleeping at night, even though I know she has. As this continues, I am left scratching my head as to why she is so off right now. Looking back at last years blog this was the really bad time for us too. What does that mean? I haven't figured it out yet.

Also worth noting is that last night she was laying down watching a movie in her brothers room and her hands broke out in a rash. Similar to what happens on her mouth and legs. She was not eating at the time, but had popcorn about an hour before. The rash was not located anywhere else on her body. It was painful but not itchy. I did take a picture but haven't uploaded it yet. By morning the rash was faded and not hurting like it had been the night before.

In addition, today we started her on Zantac right before bed. It was her first dose, but the GI said that it acts immediately. If that's the case I'm not too hopeful since she was still up at 11:00 with stomach problems. I'll give a full GI update in my next post, I just don't have the energy to do it tonight. But the gist of it is that if adding this doesn't work, surgery is her only option. Talk about stressful!!!!!!!!

Anyway, that's all I have in me for tonight. :) More later!

As usual, it's been awhile since I've posted. We had a great Christmas spending it with Grandma and Papa. Both of the kids had fun, and we even kept up with Bugs PT and relaxation exercises. I was pleased with that. :)

Bug has really enjoyed working on her mini-tramp. I got one with a bar on it to make sure she has the extra stability or something to grab if she needs it. Several of her PT exercises are done on it, and she likes to just jump in general. It's great - I wish we had gotten one sooner! Her face just lights up when she's on it. Plus, I got a great deal from Amazon.com and paid only $59 and no tax or shipping. If only I could get a Bosu ball for a deal like that!

Grandma kindly sent her Bosu ball back with us for a few months since she currently isn't using it. It gives me a little more time before shelling out another $100 on PT equipment. We are also still looking for a 4 lb medicine ball that is gel filled and smaller than 8 inches. I thought it'd be easier to find than it has been, but part of that is because online a lot of places either don't say if the ball bounces (which is what we want) or what the diameter is. The PT told me I could e-mail him the ones I found and he can help me, so I think that's what I'm going to do if I don't have better luck.

Speaking of PT - Bug graduated Friday! No more PT unless something changes. Her hip has not been a problem since we've been seeing him, so our directions are to keep doing PT nightly and continue to work on her sleeping position to try to make sure we can keep her legs from being up in the air at night. I'm SO happy about this - because even though Bug likes PT, neither of us wants to drive to Iowa City anymore than we have to! This is one less appointment, yippee! So now we're done with OT, and PT for the moment, and I am SO THANKFUL!

We also did therapy Friday, and talked about our upcoming GI appointment on the 15th. This is the first "real" doctor appointment since her meltdown, and I'm nervous. We decided that what we are going to do is meet with our therapist 1/2 hour before the appointment, and the therapists will attend the appointment with us. I am contacting the GI ahead of time and requesting we not do any invasive procedures and let him know that we are planning to have Bug leave the room before we talk about what next, what if's, and so on. At this point we are just hoping to get her in the door and to cooperate with a basic appointment. If we can achieve that, we'll go from there.

The therapist is going to look into how we can have Bug removed from the room, if Child Life can be ready and well aware of her case. In the past Child Life has not been able to cope with her, they are used to children who are afraid because they don't know what is going to happen. Not kids who know darn well what's going on and do it often, and are afraid. They are also going to see about making sure we do not have a Child Life specialist that we've had in the past, both for Bug's sake as well as because I think they will be biased against her. That's what happened before, and after all of this therapy I don't need someone judging her on the past and making things worse.

After I hear back from the GI, I'll pass that along to the therapist(s) for them to plan based on what our appointment is going to be like. My biggest fear is that we're going to need another endoscopy - sometime soon. I'm sure she'll need one again, but I just hope it's not for awhile. However, even though I know the medicine is helping, she still is sleeping on a huge pile of pillows, requesting to snack a lot (because her tummy is starting to hurt, she says if she doesn't eat right away it starts to hurt bad) and can't eat a ton of foods. So with that in mind, I am worried. On the flip side of the coin, she's not missing school for feeling ill, and she isn't having any throw-up burps. That's all good. So I'm going to cross my fingers that maybe we'll be in the clear for a bit longer.

On a side note - the silver rings splints are working out nicely. A couple are too big to where on non-swollen days they will slip almost all the way down her fingers, but most days they are just loose around the joint where they belong. The days they are falling down we just don't wear them. The others are also a bit loose, but not nearly as bad. I still need to take a picture and update it here, they are truly beautiful!

The one (and only) good thing I can say about this burnout mode is that it is me who's burned out, not Bug. ;) That in and of itself is a blessing.

I think that most parents agree that we would do anything for our kids, and we try our best to live by that. I know I do! But man, it gets tiring! I know we don't have it nearly as bad as some people. I know that we don't have it as bad as some kids with EDS. But the fact of the matter is that my personal level of stress just keeps getting higher and higher. Some days I wonder how it is that I am supposed to help my daughter when I have nothing left to give?

We had a variety of appointments Friday. Psychology was first, and it went well. Really. The hard part is that 1) It was more missed school 2) We got more homework on feelings (journaling) and relaxation techniques 3) I found out we see the GI in less than a month, and we all know Bug isn't ready quite yet - which I'm assuming means extra therapy leading up to that point.

Next was PT - which again, was great! Bug had a good time, she was *really* tired, but she did everything he asked with a smile. We spent a whole hour in PT this time, and learned some new exercises. The hard parts for me: 1) We have to go back, and I thought we were done (I know, wishful thinking!) 2) We have to keep a daily PT log, and I stink at record keeping let alone staying on schedule. Now he'll know exactly what days we missed! LOL 3) He identified some other areas of concern, which while I'm glad to know it's still hard to hear.

Finally, we saw the OT. We love our OT, and were SO excited to try on Bug's new Silver Ring Splints (a full set of 10). Well, either her hands were swollen during measuring, and now weren't, or he was a bit generous during the measuring because she swells so much, or a combo. But regardless the rings were a bit on the large size. He adjusted them, but several still were a bit loose, to the point that Bug took them off an hour later because she was afraid they were going to fall off. I know she'll grow into them, and I think what I'll do if they aren't fitting better by Monday is try moving the fingers around. We should be able to at least get a few fingers working well. I'm still holding out some hope that they will fit better now that we are back in our typical environment which is warmer than his office. I guess we'll see!!!

I feel good about being proactive, and doing things like working on strengthening her muscles now before things get worse. I feel good about her learning more about feelings (and feelings about Dr's and being "different") and how to relax. I am just going through another phase of "I wish my child didn't have Ehlers-Danlos Syndrome" again. I suppose it's a private pity party, LOL. What's crazy about it is that Bug is doing well, and it is so obvious that these things are paying off. So why can't I just do them, and not feel sorry for her/us? Wahhhhhh....

Anyway, things are going well - and hopefully after our Christmas vacation I'll feel more relaxed and ready to be "supermom" again. Bug did tell me several times today what a nice Mom I was, and how happy that made her. :) She also told me yesterday how much she loves shopping and "hanging out" when we go to Iowa City. I think it's little comments like that which keep me going. That and her most amazing smile - there is just so much love and beauty in it and her. She is remarkable.

Talk to ya'll later! (that's hello to my southern friends!)

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!