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!

Well, we made it, kind of! :) Bug made it through the three 6 hour school days the first week, and then this past week made 4 of 5 full days (7 hours). Friday her throat was hurting and she came home. It was alternating with her stomach, no fever, so I'm pretty sure it's reflux issues. She keeps asking when she is going to the tummy Dr. this week, so I think she is ready to get it resolved as well.

Our special chair is now done, and she can start using it on Tuesday. It looks *wonderful*! They painted it white, and raised the back as well as some other minor adjustments. With Bugs fashionable cushions I think it will be the envy of the class. LOL She is so excited, I hope that once she starts using it the excitement continues and that it helps with her fatigue.

We also took our King Beany beanbag chair back to class, which means she can't sleep in it at night anymore. I've actually considered getting a second one, even though they are expensive (around $175.00) Worth every penny though! My only complaint comes after trying to wash the cover. They make the zipper area way smaller than the bag, so you have to actually remove a ton of foam (for us two trash bags full) to be able to remove the inner bag and wash the cover. Getting the cover back on was just as hard, I ended up stuffing the garbage bags straight in because it was so messy! LOL So now her bag crinkles a little, but still is comfortable. She has been using it to rest a little in class, so I'm glad it is back there.

Bug is still doing the protein bars mid-morning, and most days is only attending the lunch recess (it is the longest). The other recesses she either goes in the library and reads, or into the nurses office rest on the cot. The inflatable camping cushion on the cot she likes so far, but the real test will be in the winter. She also has a pillow there which I brought from home. She missed gym last week due to fatigue, but she was ok with that and didn't complain.

More later...

Wow - so much has happened in the last 24 hours! We had our meeting at the technology center on Monday and it was great. Bug was really tired that day, but she went and tried everything out like a trooper. We just took several rest breaks inbetween different technology trials. I'm going to have a separate post about that later, when I have my notes and can write names in case anyone else needs the information, but it was a great experience and Jim was a great help!

We also had our new ring splints made - all ten of them. It took about 90 minutes, and Bug was great for that as well. Everything fit wonderfully during that time, but after we left and got outside and walking around one by one her fingers started to swell and the rings came off. :( Since then we have been unable to get them back on, and the couple that will go on get stuck and make a suction sound when we pull them off. I am crossing my fingers that we can try lowering the temperature tonight while she sleeps and get her fingers down to where the splints will at least go on tomorrow. We'll see. If not, back to the OT we will have to go, although I don't know what to do to get them to swell while he's making them.

Yesterday was our IEP meeting. We left the IEP as it stood from last December, but brainstormed a lot to get data for the upcoming meeting. It was almost 3.5 hours we all talked. We had our 1st grade teacher, 2nd grade teacher, principle, OT, PT, gym teacher, gym student teacher, and school nurse. Things that are worth mentioning are that we are going to try allowing bug to go to lunch early with a different student (drawn from a hat) each day to allow her more time to eat, she will also be allowed to go to the library or computer lab as available (has to have an adult present) during resting recesses to read or practice typing, she is going to be given round stickers with numbers on them to put on her math worksheets so she won't have to write them until our technology is in place, the school is looking into getting some benches outside at the playground (we have none) so she can rest outside and be social with the other kids even if she is tired. Until then, chairs will be brought out as an option. She also will have an aid for state testing to fill in the bubbles on the test, and for multiple choice in the classroom she can use a marker to put a dot on the correct answers. Her bean bag chair is back in the classroom with a lapboard for if she needs to be in a different position while working. A camping pad is in the nurses office to go on the cot as a trial for when she needs quiet rest, in hopes of keeping her in school. I also was allowed to leave a pillow for her to use with it. Technology was discussed, but again, that will be in another post. :)

We also are going to be able to paint the special chair they got her, to dress it up. I'll take before and after pictures when the chair is finished being worked on. It's interesting!

And finally, the request for an air-conditioner went fine, we just have to wait for our medical note to get here. (hope it's soon!) :)

The first day of school was fun, and so far Bug hasn't crashed. I suspect tonight will be early bedtime though. She did work hard, and not being able to use any ring splints means extra work for her. But she was *very* happy, loves her teacher, and enjoys most of the kids in her class.

All in all, it's been a good couple of days!

I'll admit it, I've had some avoidance issues. :) I've known all summer I needed to get a lot of research and ideas down on paper to plan for second grade, but I've just put it off. It was so nice to be kind of "normal" for a bit and not having the pressure to have to seek answers right then and there. Now that school starts in less than a week, and our IEP meeting is even sooner than that, I've been hard at work getting my thoughts in order and picking lots of brains for new ideas and suggestions.

First of all, I just don't think I would be where I'm at in this process without the ideas and support of the various Ehlers-Danlos e-mail support groups I'm on. Reading about everyone on the lists and having other adults with EDS to bounce ideas off of has been a HUGE help! I've also relied heavily on our Parent Training Center called Ask Resource, as well as Iowa COMPASS. Today I learned about another technology group that has offered for Bug to come and try different assistive technology out in their office on Monday. I am beside myself with excitement - it's like a kid in a candy store! :) He has voice activated programs, touch screen, mouse driven programs, and lots more. So many things to test!

We also will be getting 10 new ring splints that day. Fun fun!

Today I also spoke with our AEA's OT, and kind of got a basic meeting agenda together. On the list are to discuss options for PE inclusion, creating a good comfortable and quiet place to rest, assistive technology options/implementation, seating and desk size/organization, getting a basic speech evaluation (and see if we need a more comprehensive one), medical update, plan for missing school due to pain, and I also let her know we requested a medical note for an air conditioner for her classroom. The heat is bad for her fatigue, as well as it causes her fingers to swell to the point where her ring splints don't fit. It was a good conversation and I am looking forward to our meeting on Tuesday!

On another note - our GERD has not gone away. We are still having frequent stomach aches, feeling of fullness, throw-up burps. Our GI called our Prevacid script back in and scheduled an Endoscopy for in a couple of weeks. I'm afraid, but I know that it's best we get in and actually look at what is going on. It will allow us to treat her better in the long run. But still, it was hard to make that appointment.

That's about it for now! If anything earth shattering happens before our meeting I'll post it, otherwise, 'till then!

I can't believe that "bug" will be 7 in a few short hours! My how time has flown!!!

We are celebrating with family (grandma and papa are here) on her birthday, and then will have a party with her friends when school starts. Believe it or not, that is less than two weeks away as well. My do I have a lot to plan, research, and prepare for before then! Our IEP meeting is on the 22nd, and I have *tons* of notes to put together with ideas, thoughts, and suggestions before then. We also have an appointment with the OT who makes her ring splints on the 21st, to get an entire new set. Her hands have grown that much that every finger needs a new one. Wow!

More later, but for now, a weather report as we have hot feet. (treated with children's advil tonight, cold packs would not work)

Wind:		From S at 7 mph
Humidity:		84%
Pressure:		29.74 in.
Dew Point:		77°F

Temp: 82 (feels like 91)