Back to Burnout Mode

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!)

Blue Cross Blue Shield Wellmark ROCKS!

First of all, I'm going to do what I'm soooo good at, backtrack a bit! After my last post about everything being all set to go I got sent back to zero due to someone who couldn't speak English. Now, don't get me wrong, I couldn't speak another language to save my life, so I admire people who can. But, do not work in a customer service field where you are gathering important information until you can speak it fluently. Please. This person I spoke to ended up not understanding anything I said (I wondered at the time, even to the point where I called right back and spoke to someone else) but I had no idea the damage she would do. After our call where all I wanted to know was if the splints were covered (I had gotten codes the last person I'd spoken to had asked for, which is why I was calling again) she went and spoke with a nurse and gave her some kind of misinformation which caused it to go into Bug's file that Ring Splints are NOT custom made, and therefor not covered. To make matters worse, she claimed our last set of rings made at the hospital were not covered and were rejected. Of course, she calls me and tells me all of this after I'd made the drive to have the splints measured (and had made a call on the way to Iowa City, spoke to another agent who looked at the notes and gave me the go-ahead). I was livid to say the least. The thing that upset me the most was that if she had understood even the most basic part of our conversation she would know that 1) Ring Splints exist (she had tried to tell me there was no such thing, until I told her to look at our file, we'd been having them made for 2 years already) and 2) That the whole point is that they ARE custom made, hence the 1.5 hour drive to see an OT and have measurements made, and rings ordered. I spoke to another rep, asked that the non-english speaking one not be allowed to work on our case anymore, and got a manager.

I spoke to the manager and explained that I had talked to 7 reps before this one, and all had understood clearly what I was asking about. Several had spoken to managers, or the claims departments. None had any problems with what I was saying, the only reason for the callbacks were for additional information. She looked in the file and asked to call back the next day so she could look into it all more. The next day, she calls, and apologized profusely, saying she had no idea what that last rep had been thinking/doing. She had spoken to the nurse the rep had, and had cleared things up. However, she didn't stop there. She spoke to multiple people in the medical claims area until she found one familiar with Ehlers-Danlos Syndrome and ring splints. She was able to determine that the splints were covered, and then told me that she was going to find a way for me to order them through a medical supply company so that I would not have to pay out of pocket (our order was almost $1,000) and get reimbursed. I said ok, but didn't really think it would happen. Everyone knows that the Silver Ring Splint company does not take any insurance, and Silver Ring Splints are not an item medical supply companies carry. So, I didn't hold my breath.

The next day at 8:30 AM my phone rang, and it was the head of the prosthetics division of BCBS down in Texas. She told me she was working on things, and that my "dear little girl" was going to get her splints and we were not going to pay anything for them. She said that she was dealing directly with the corporate office of a prosthetics company in Iowa, and that they would do it for us. She had me fax our order sheet, and then called me back the next day to say the order was placed and should be at our house next week. (this week now!)

I cannot say enough good things about this now. For one, I have two great contacts in the insurance company. One whom I have a direct number for. The other told me to use her name should there ever be an issue again about the rings. She also told me that now that we've done this any time in the future we need to place another order it is in the file to be handled the same way. How great is that?!?! I was happy enough to have found a couple of people who actually knew what we needed, and if it was truly covered, but to then have them go so far out of their way and actually find a way to make us not have to pay a penny out of pocket? That was outstanding! Let's face it, $1,000 is a lot of money to pay out of pocket and then have to wait and see how much and when the insurance would pay it.

So - the moral of this story is don't give up, don't be afraid to ask for someone "higher up", and keep going even if it seems like you're a broken record. If you can find the right people, they can find a way to make things happen for you!

Silver it Is! PT, here we come!

In light of yesterday's super long post, I'm going to try to keep this one short. We seemed to have gained an approval on the ring splints from our insurance today - and plan to have them fitted on Monday. Yippee! It looks like it is going to be 100% covered as well. Double Yippee!

Also, Bug woke-up this morning in pain again. The same area as last time, but the pain was not as extreme. She was able to move, so I gave her Tylenol and told the school no gym or recess. Mid-day she was fine. I talked to our genetics nurse who does think that the last two times this happened it was a dislocation, and that this morning could have just been a sub lax. She gave us a referral to have a physical therapy evaluation on Monday. We are hoping to just be able to walk out only needing exercises we can do at home, but there is a chance we might have to go back. I'll cross my fingers! It will be nice to get another opinion on where her main problems are and how to help them.

I'll keep you all updated - have a Happy Thanksgiving!

Silver Ring Splints - Dislocation?

I had a couple of minutes (that's rare these days!) and thought I'd update this blog just a little bit. First of all, I think we are going to order Bug silver ring splints next week. I am still waiting for the final medical codes to give the insurance, but should have them in the next day or two. However, they were pretty sure that it would be covered, and since we not only met our deductible for Bug, but also the max out of pocket expenses for the year, the rings should be covered 100%! Ok, maybe I shouldn't be so excited about that, but if you're going to hit the max out of pocket expenses you might as well be able to make a claim or two after that. LOL

Why are we trying to go silver? Well, while we *love* Keith and his custom rings, with the amount of joint swelling Bug seems to be having this year we've already gone through 3 sets and currently only have 4 rings that fit. So 4 out of 30 is not so good. He makes them beautifully, and they fit just right at the time. But as soon as her fingers start to swell we can't get them on, or sometimes off. While a custom fit has worked great for us the last two years, when your joints/fingers swell it means that there is no room for expansion in the ring, and it just won't fit. After reading about the silver ring splints from several adults with EDS, and talking to the people at the Silver Ring Splint company and our OT's office, everyone seems to agree that while you shouldn't make a habit of stretching and contracting the silver splints, they are able to be slightly adjusted when fingers swell. Something we seem to really be needing this year.

Yes, they are expensive. But our OT bills are currently running 1,200-1,500 a visit for our current custom rings. Keep in mind that's for 10 rings, time spent, and materials. However, the silver rings are $69 for 8 of the ones Bug needs, and then the two thumbs will be between $250-$350. So the initial cost will be a bit (but 100% covered I hope!) plus we'd still have the OT's time billed. BUT - hopefully we would not have to keep going back every few weeks and getting new ones made. On top of that, as Bug grows she might be able to move some of the rings to different fingers and only replace a few at a time, something that is not currently an option since they are custom molded.

Now, for parents who are just ordering ring splints for their children for the first time, would I recommend these? Heck no! But, Bug has been wearing them since age 5, that's 2 years now. During that time, she's had one stepped on, one vacuumed up by a janitor, and one lost. That's not too bad. The first two things happened within a few months of starting wearing the splints. The last one was a year ago. That's a pretty darn good track record for a little girl. :) However, not all kids are going to be that responsible, and while we're having swelling issues now we had great luck with the plastic custom splints until this school year. I really think that for kids without swelling and/or just starting out they are the best way to go. But, if for some reason they don't work, this is another option for you to consider.

Another thing to note is that we have Blue Cross, Blue Shield. According to our disabilities center, they cover silver ring splints for Ehlers-Danlos Syndrome. I was also told by the Silver Ring Splint Company that they have customers who have gotten them covered by BCBS. Blue Cross Blue Shield also told me that they believe they are covered as durable medical equipment, but again until I have the CPT code from our geneticist, they won't guarantee that 100%. My point is don't give-up hope that you can't get them covered, apparently Ehlers-Danlos Syndrome can be an exception for splints even if they aren't covered for RA or other conditions. Personally, I think that's silly, but I am thankful if we are covered. Another thing is that your insurance is likely to ask for a "hic pic" code. (I don't know if that's right, or if it is supposed to be "hick pick") They like to have this to help decide if they cover the equipment. The Silver Ring Splint company does not have one, and no matter how many times you tell your insurance that they might keep insisting there is one. They are wrong. Know this before calling, and tell them they can call the Silver Ring Splint company themselves to verify if needed. It will save you a lot of time, trust me! LOL

Also... I think Bug had a dislocation or sublax this week. It was on Saturday. She woke-up crying and screaming in pain, begging us to come get her and carry her into the bathroom. All day she laid on pillows on the floor in pain. We gave her a heat pack, but it didn't help. She didn't want any Motrin or anything, so we just let her be. She didn't move almost all day, and when she did have to move she cried in pain. At 5:30 I was cooking dinner and looked up and there she was, smiling at me and said "My leg popped, and now I feel great!" She said it was a "tiny bit achy" for about 10 minutes, but she was walking around the house, talking, and like a new kid. From that point on, she went on to start running and playing with her brother.

This is now the second time this has happened in about a 6 week period. The first time was similar, pain in the exact same place and same amount of pain. However, she didn't pinpoint a pop like this time. This time she heard and felt it. I feel silly looking back now because I should have guessed it could be a dislocation, but because of where she was pointing it wasn't obvious that it was a joint. Thinking back, the pain could have been migrating, or, it could have been in the joint and it was hard to point to. The hip isn't exactly as easy as a fingertip. ;) A couple of people on the eds mailing list have given me some suggestions and ideas for the next time it happens to get a better idea of what is moving and how to help it.

I am kind of sad about it though. She's had a lot of hip pains off and on since we first found out about everything. She's popped a lot all over her body. But until now I've not really been able to decide if she was sublaxing or dislocating or just making noise. However, this hip stuff I'm pretty darn sure isn't right, and is one or the other. I guess it was bound to happen, I just wish that it would have been years from now instead of now.

Oh! And Bug LOST HER FIRST TOOTH today! Woo-hoo! I was starting to think it would never happen - but it did! She's 7 1/4 years old, and pleased as punch! LOL

Backtracking a bit to Assistive Technology

I thought I'd spend a few minutes going back and posting about what we tried at ICATER - the Iowa Center for Assistive Technology Education and Research. (Thank's again Jim!). I'll start with the things that Bug tried and liked. Keep in mind all are adaptive Computer Access Devices, not toys and are priced as such. However, if your child needs them for school, your school very well might be able to get them or already have them.

First off she liked the Joy Stick. It was an "alternative to using the mouse for movement on the computer". I think the thing she liked best was that she didn't have to use her fingers, or do any gripping motions. She just touched the palm of her hand on it and moved it whichever way she wanted the mouse to go.

Next, the more logical choice for her, was a large Track Ball. This was her favorite one, although she tried many. I think the ball and buttons were just the right size for her small hands. Logitech Optical Marble Mouse (USB/PS2)

She also *loved* Dragon NaturallySpeaking, the only problem was that because she is still so young the software had a very hard time learning her voice. Even with lots of training it still wasn't understanding even basic words for her. But she still thought it was wonderful, and wants to use it. Jim from ICATER told us that it is normal for the program to have problems with recognizing children's voices, but that he thinks another year from now we should be able to get it to work a little more easily. Of course, if we have unlimited time to train with it we could probably get it to work, but we don't right now. He said that he's even seen someone with a severe speech problem train it, it just took a long long time. So it is possible! For us, this right now is looking like our best option long-term. Bug loved it, it was amazingly fast, and it would meet her needs for multiple programs.

Kurzweil was another program that she liked, but I don't think we need at this point. It was a "scan-and-read software that reads documents and Windows applications". The great thing about it was that you can scan worksheets in it, and type the answers right on the blanks. The drawback was that someone has to create a text field for each of those lines, and if you have motor skill problems or a lot of fatigue that could be a hassle. When we talked to our AEA about it, we decided should Bug ever use that program that someone would create those text boxes for her ahead of time to reduce the extra work. Just another option for those of you who might need it. ;)

The final product that was a hit for Bug was Co: Writer. This is a "Word prediction program to use Linguistic Word Prediction intelligence". She *loved* this, and while you have to train the program to your vocabulary, it happens very quickly. The reason that it isn't the number one pick is because you still have to do a decent amount of typing, or picking out the words from the selections that pop-up. So while it does reduce the amount of time and stress on the hands, if you can get voice recognition software to work I really think it's the most helpful and logical choice for a child with hand fatigue, motor problems, flexible joints, etc.

Other options we tried but aren't really of use to us (but could be to someone else!):

HeadMouse Extreme. "Replaces a standard computer mouse for people who cannot use their hands". Way cool! Just not something we need. But it sure was fun to play with! You wear a headband and just move your head to control the mouse. Fun!!!

Fingerprint Scanner (for logging in) "Provides users a convenient and secure way to manage and access multiple security phrase and codes with a fingerprint". Again, really cool! But not something we need. One of the great things Jim did was let Bug play with some of these high tech devices just for fun. It was really great of him! (this isn't he exact scanner we tried, but a similar product) Key Tronic Secure Desktop Scanner, Fingerprints (F-SCAN-S001-US)

AlphaSmart 3000. "Allows individuals to create, edit, and store their own original compositions and essays". I suppose this is helpful for some, but not for us. For starters, it is limited, since it is not a full blown computer. Good for a short-term solution, but again, if you are looking at a child who has a long-term disability, I just don't see the point of training them on software/computers that can't grow with them. However, it is lightweight and easy to transport, less expensive, and probably a bit more durable than some of the other options. It does have some word anticipation, and I believe programs that can be loaded onto it that make it more age appropriate.

Clicker 5 was a cool little program. However, it is for children who are much younger than Bug. I'd say pre-school to K personally. It is a "Writing support and multimedia tool that enables users to write with whole words, phrases, or pictures". The plus side was that it was easy to use. The down side was that it is really limited on how it is used. You input a series of words and then a child can select each word and write with them. It does show pictures to go with the words, which makes it great for early readers. But it is very limited since you can only work with the words that are currently inputted in the boxes. Great for basic starter sentences, but not helpful for kids who are already fluent readers and writers.

Intellikeys was a cool adaptive keyboard we tried. It is really hard to explain, so click on the link to view it. I would say it is helpful for kids with fingers that tire easily, and who work with computers that have stiffer keys on the keyboard. An option for a child who is able to type and doesn't need the voice recognition software but finds a traditional keyboard a bit difficult to work with. Bug loved it, but again, it just isn't quite what we were looking for.

Other things to note. ;) Jim told me he was not a big fan of iListen or ViaVoice. Also, we are going in to test another new program which is actually a combo of two. Word Q and Speak Q. I will give an update after we go test them, just under two weeks from now.

Hopefully this will help someone out - I cannot say enough how wonderful it was to have this resource available to us. Even though our AEA has access to some of these items, they do not have a center where Bug can just go and test them off and on at her own pace. It was a huge leap forward for us to be able to do this, and I hope this post will help someone who doesn't have access to a center like us!

Wow - Thanks Guys!

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!

A Period of Denial

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!

First Full Week of School

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...

Aweomse Visit, Great IEP Meeting, and Back to School!

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!

Sorry for the lack of posts...

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!

Almost 7!

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)

Article on Hippo Therapy

I know I mentioned Hippo Therapy before, and today I found this article in the Washington Post online and thought I would share it. Enjoy!

Hippotherapy More than Just Horseplay

Note to self...

More hot feet - here are tonight's stats:

Humidity: 83%
Pressure: 30.11 in.
Temp: 68°F

More hot feet and stomach problems

Just another medical note - hot feet again last night. Not as bad as the night before though. Here's the weather info:

Pressure: 29.85 and rising
Humidity: 70%
Temp: ? (mid 80's at the time I think)

Also, Bug has been having stomach problems the last two days, and now this morning too. She is feeling like she is going to "throw-up" off and on, and I'm hoping it's a flu or something, but am making note since we have now been on 1/2 her normal Previcid for 10 days. So it could be reflux related.

Hot Feet

Just a quick medical note to myself that Bug had horribly hot feet tonight with little relief. I did remember to check the barometric pressure and actually record it here. It is currently 29.86 in. going up. I suppose I should also record the humidity, daily temp, and night temp just for better record keeping. That way I don't look back later and go "should have done that!". :) So, humidity currently is 79% and falling, and the days temp was somewhere around 94. Current night temp. is 81.

That's it, I just didn't want to forget. :)

Yes, it's truly summer...

I just logged in to see how long it's been since I last posted, and was SHOCKED to see it's been over a month! WOW! Needless to say, we've been busy busy busy around here!

Bug finished up her first year on the Challengers Baseball team, enjoying a nice trophy at the end which even had a girl on it instead of a boy. My, how things have changed since I was a kid. :) In case I've not mentioned the Challenger team before, it's a baseball team of kids with various physical or mental "challenges" that keep them from playing regular baseball. They have assistants (other kids without special needs) who can help them hit, run, or just about anything they might need. It's all in fun, and you play when you feel like it and that's about it. Bug had a great time and really enjoyed playing a sport that she normally can't. It's just too bad that there aren't Challenger teams here for other sports, like Soccer.

We have also now finished summer school. During that 4 week period she made it through every day (a day was 3 hours) and kept on task with the other kids. She didn't even use the laptop at all! Now, there are several reasons for this I am sure. First, it was a much shorter day. Secondly, they didn't do much writing at all, it was mostly reading based, therefor when she did need fine motor skills she had the energy. I was really excited to talk to her teacher at the end of the session and hear all of this, because it's just more information to take to our IEP meeting next month. Bug loved summer school, wants to go back next year, and is constantly asking when regular class will be starting again. This is NOT a child who is lazy and avoiding class, ya know? I just hope that we can get a better plan in place that will help her make it through the days and challenge her brain this year.

We also have now finished our HIPPO therapy and really enjoyed it. We can't wait to go back next year, and if we can possibly squeeze in some private lessons this summer we might do that. But for now, we're done, and our summer is still pretty busy, so I am not sure it's going to happen. :) We also finished vocal lessons, which Bug will do again in the fall. She loves them, and we're taking them from our music teacher so she is great about not forcing her to do piano too (hurts her fingers) and also about letting her sit for the whole lesson. (a lot of students stand, it's better for singing). We had a great time and it's nice that we've found something else that Bug likes and is able to do!

We're still working on typing, right now our goal is 15 minutes a day, but some days we do none, and some we do more. I don't pressure her to do it, because I don't want to make it into a negative thing. This way she is still enjoying it, which I think is important. We are also still reading daily, and trying to do some "homework", although I haven't quite gotten my act together on that. LOL School starts in 5 weeks, and I firmly believe the more I can keep my kids on track the easier it will be on them.

In between all of that and all of her brother's activities, we've had a family vacation, and spent LOTS of time at the pool! We've been having a great time, and love the fact that Bug can sleep as long as she wants right now. I think that will be the hardest part when school starts up again, all of the breaks on the "as I need them" basis will be harder to get, and certainly the sleeping until she needs to on any given day will be. Oh well, we do the best we can. :)

Till next time!

15 Hours of Sleep

Wow - time is flying! Suddenly it is the middle of June - how did that happen???

Bug is now in her second week of summer school. She is loving every second of it! We tried skipping the mid-morning protein bars since they are only in class 3 hours and have a snack during that time, but it didn't work. So, back to protein bars it is.

It's really interesting seeing the amount of work she is bringing home, completed! What a difference the change in schedule makes. Most of summer school here is reading based - so there isn't a lot of written work at all. Because of this, Bug is able to complete more assignments when they do have them - which is wonderful! Just goes to show once again that she does enjoy doing the work and will do it on her own when she feels well.

We saw our allergist last week and he agreed that the rash around her mouth (see earlier blog posts) does look to be some kind of reaction to food. So now we're scheduled to do blood allergy tests for food in August. I hate to do that to Bug, but I've put it off as long as I can and I still can't figure out what is causing the problem. So - hopefully we'll get a couple of answers when the tests are done.

We were also able to get squeezed in with our hospital OT while we were there. He made us three new rings to replace some that have been lost the last month. He was amazed at how much her fingers have grown over the year - she will need an entire new set of rings this August. We could have gotten them now but decided it would be best to wait to see if she grows more since these are small but she still says they are comfortable. Since we had just been up to allergy I had gotten a copy of her growth chart and was able to tell the OT that she's grown a whole *3 inches* since he made those splints last August! WOW! So he was validated in his guess she'd grown a lot.

Summer is going well for us so far. Bug is loving the lazy afternoons after school, and we've been going to the pool a lot in the evening. One thing that is kind of sad is that her swimming has regressed so much after not doing it for several months. I am hoping after another week in the pool she'll get some of her strength back, but if not, I have the number of a new person to do private lessons with. Our old swim teacher is just too busy these days. :(

This weekend Bug had a "normal kid" schedule - she played all day Sat. in the sprinkler, and spent the night with a friend. Then she went to church early on Sunday and hung out over there for most of the afternoon. By the time I got her at 4:30, she was beat. So much so that she and her brother went up to play the computer and she fell asleep sitting at it, head down on the computer desk!!! I moved her to her bed, and she slept from 5:00 pm Sunday until 8:00 AM Monday. I had a really hard time getting her up too! However, we made it to school, just a few minutes late. I'd like to give her a more lazy day today, but we have vocal lessons this afternoon and then we plan to swim some. (I want her to swim at least a little each day) So, we'll see. It might be a busy day just with early bedtime.

One great thing about summer is that she is able to play and we can take the time to re coop! During the regular school year we just don't have the time to do that. If she plays like a "normal kid" then she is struggling all week in class. At the same time, it's so unfair to not let her play much - after all, she is a 6 year old! Maybe this summer I'll be able to figure out a better balance so that we can still do some fun stuff even during school.

I wanted to update that we are not doing any jungle gym stuff - I just don't think there is a good reason to. I think that the main concern the PT had was that we have these domes made from bars on the playground that Bug just won't even go near - and that is where most of the little girls hang out. This summer instead of teaching her jungle gym stuff I think I am going to try to get her comfortable on the school playground, and help her find activities there that she enjoys and are safe for her. I'd like to see her at least go under the dome, (no climbing required for that) but I could care less if she ever climbs it. I am also trying to do some research on getting a bench for the playground so that this year maybe she could sit outside during recess instead of inside. That way she gets fresh air and can socialize more. If anyone knows anything about park benches, or if there is somewhere that might donate one, let me know. :)

Finally (for now) I wanted to let you know that we got to bring the iBook home for the summer - and Bug has been playing it daily! When I say play, I mean playing the TYPING PROGRAM! She *loves* it, and has been practicing like crazy! I am so proud of her - every time she does that she is helping herself become just a little more independent! WOO-HOO!!!

I can't remember what I have posted here recently, so I'm going to go back and see if I've written my IEP stuff, summer goals, and the like. I also still want to get her accommodations posted, as well as the things we've modified at school and home, and the pictures/info from how her OT makes her rings. Hopefully summer will give me a chance to get caught-up on some of that.

Thanks for continuing to read and comment - you guys have given me some great ideas and strength over the last few months!

Jungle Gym?

Ok, this might sound like a no-brainer, but today the school's PT called to remind me about our end of the year meeting to discuss summer. During the call, she mentioned wanting me to meet her at a playground that has a low jungle gym so that Bug could be taught how to use it. She said "she told me the only thing she doesn't play on at recess are the bars, because they hurt their hands. I told her that she needs to develop calluses on her hands, that everyone does, and we just need to practice them to get those." I must admit, I was shocked and didn't have a response. After we hung-up, I called the Geneticist and left a message to get a go ahead or a "heck no!". My daughters hands hurt her more than any other part of her body, I cannot understand how it is good for her to be hanging from them on Monkey Bars... Even the OT from our school doesn't do too many strengthening exercises with her right now because they get sore and tired so easily - so why we'd push her to do Monkey Bars is beyond me.

I think I'm going to say no regardless - but it would be great to have the Dr's backing me up on this. Since children do not have to do Monkey Bars, I don't see why we should take a risk and have her do them. She doesn't miss doing them, or wish she could. So I would rather focus on other things. However, this really makes me wonder what is going to happen when I ask for adaptive PE for next year. After all, the PT is the same person who typically recommends an adaptive PE program in our district. Unfortunately, we just don't have the resources that bigger areas have and so several of the specialists actually do multiple jobs. I really hate the idea of having to step on toes and request a Adaptive PE specialist be brought in from another area, but I think I might have to. I guess I'll know more after our appointment this week.

Seven more days of school - yippee! We are all looking forward to a change of pace for awhile, although Bug will be doing summer school 5 days a week for 3 hours. I'm hoping that goes well and gets her a little more practice on some of the things she learned this year. I also am hoping I can talk them into putting some programs on her iBook before summer for us to get started practicing before fall when she has real work to do. Crossing my fingers...

Heading to Second Grade

I cannot believe that it's been almost 2 months since I posted here. So much has changed, and yet so much has remained the same.

Bug is doing pretty well, her problems remain the same with no real solutions. We have missed almost no school since the weather became warm, a total 360 from winter time. We only have three weeks of school left and we're busy trying to catch-up on work that's been piling up during those tough days. We've made great progress these last couple of weeks and should finish no problem by the time grades are due.

As the year is about to end, I've spent a lot of time reflecting on the things that we did this year, trying to decide which modifications will work for next year, and what will need to be added. I realized that while our IEP does not come up to be renewed/rewritten until Dec '07 all of the goals are written to be completed as of the end of this school year. I have gone back and forth on whether to recall a meeting before school is out or not, but have yet to make a decision. I have a call out to the OT to pick her brain and depending on how that goes I will either push for the meeting now, or wait and push for it the first two weeks of school.

Things at the top of my list for next year are 1) a commitment on which assistive technology she will be using, and making sure it is decked out in any available programming to make schoolwork easier for her. Currently they still have her with an iBook, which is fine, but there is no way for her to do any of her work on it except free writing. Most of the day is worksheets and math, so the iBook isn't as helpful as it should be. 2) A new chair. She needs a chair that provides additional support for her body and correct posture. I am trying to research this right now so I can enter the meeting with ideas and suggestions. 3) Adaptive PE. Physical therapy once a month is not replacing PE for her, and this year she sat out of PE more than she was allowed to join in. At the beginning of the year she was not bothered by this, but as the year is ending more and more often she is sad and upset about it.

Due to the fact we live in a small town, our AEA does not have an Adaptive PE Specialist. Also, the person in charge of Adaptive Technology is our OT. While she is wonderful as a OT, and has been helpful with the technology, I would really like a specialist to come out and do an evaluation and make some recommendations since this will effect Bug most of her schooling career. These are things that I plan on talking to the OT about when she calls.

Also on the list is that she get instruction on using her AT equipment. If she continues with the iBook, I am going to insist that she be given typing time. I will not accept the "she is too young" argument anymore, I spent this year trying their way and now it's time to be more assertive in trying mine. Since she still misses most recesses, there is no reason she can't have typing time during one of those periods a couple of times a week.

Another thing that the ASK Resource center said we need to talk about is what kind of instruction will be provided should she continue to come home early most of the winter. They think that she should qualify for home instruction if this is the case. I don't know if she does or not, but I am going to ask. Regardless we need a plan in place for when she is missing a lot of school or coming home early. We have spent a lot of time at home this year doing school work that was meant to be done in class.

Finally, I am going to request that the OT do more strengthening work with Bug. This year they didn't want to wear her out since she was already so tired at school and limited how much work they did because of that. Next year I think I want to push that they do more strengthening in hopes that it will help build her endurance. If we have an appropriate plan in place for when she is coming home, this should be a risk worth taking. She is not gaining any endurance at this point and still is bringing work home, so why not at least try to build the endurance if that is the case?

I have so much more to share, but my son is ill and calling. I hope to share more later, and still plan to get to the accommodations that are currently in her class as well as share the pictures of how her ring splints are made. :)

Spring is Here!!!

Finally, warm weather!!! It's been a great week here, warm but not hot, and the kids are on break. Bug has done great so far, no tummy aches, lots of rest, and playtime with friends. Who could ask for more?

I saw her PT last week at the school, and asked for her thoughts about the fatigue and stomach aches at school. She was really pro-protein, and was thrilled we've already added two high protein snacks into her school day. She also suggested some supplements, which she has been taking for years, and I am awaiting more info on that when school starts back up. She seemed to be on the same page about the fatigue being the root of our problems (stomach included) but wasn't as enthused about my seating theory. However, I'm going to run that by the OT's since I think that might be more of their thing. But in the end, as we eliminate each of these potential causes, that gets us closer to more solutions. So if we keep trying what they suggest, and still have problems, I'm thinking that they will be more receptive to some of my more "off-beat" suggestions. ;)

After having a taste of Spring Break, I just can't wait for summer! It is so nice to see Bug getting lots of rest, having time to play, and enjoying herself. School just wears her out so much... It's amazing how much of a difference it makes just having the leisure of being able to stop and rest as needed instead of being on someone else's schedule.

I'm also looking forward to lots of lazy days at the pool. I just wish I had a laptop so I could actually get work done while she plays and swims. We spend so much time there I could accomplish a lot!

That's about it for today - like I said, it's so much less stressful when we are completely on our own schedule. Of course, we aren't doing any school work right now either, which gets tiring. Breaks are so nice...

Just a little note...

Today was the warmest it's been in months - yipiee! 72 degrees, sunny, and clear. Bug told me she went out for two recesses today, as well as for a special reward time outside they had earned. She hasn't been out that much in a single day since fall. So, I asked her, why she went out so much today. She told me because she wanted to. So I asked why she doesn't go out when it's colder out. And she said "because when it's cold my body hurts more." So - note to myself to share that with our Dr's. It makes sense in many ways - and rings true of what I remember from last year. Of course, last year we were just beginning our journey and I wasn't keeping notes like this yet, but from what I can remember winter was really hard on her compared to the warmer months.

That's it for today!

Sleeping Late...

Yesterday was another off day, Bug just didn't seem right from the beginning. However, she made it until 12:30 before the school called me. Then she rested in the office for 45 minutes, went to class with me (I was going to volunteer) but it was apparent neither of us was going to get anything done. Finally, at 2:15 we went home. She rested on the couch until 3:00, then popped up and said she wanted to return to school. Ack! School was over in 20 minutes. (she doesn't know time very well yet)

So... I've decided to take a new approach. Instead of trying to get her to hang in there and rest at school, I'm going to start picking her up right away and see if that 45 minute break still holds true. Then if so, she can still return to school and hopefully get something done or at least enjoy the rest of the day. It's at least something new to try.

Today I let her sleep in, she slept until 9:30. I think that was somewhere between 12-13 hours of sleep. So far no calls from the school so maybe it is helping.

I also wanted to state that several of you have posted great feedback to this blog - but can you please include any links to studies or resources you mention? I have a folder I am working on full of this kind of stuff, and the more research I have to back my requests the more apt we are to get them. I love the fact there are people even reading this - and love even more you care enough to post back. But if you have some information that could be helpful, please share that too. I'm always looking for more! :)

I did take in a travel lap table today to be used with Bug's beanbag chair. I hope that it is helpful - even a small step in the right direction would be good!

Thanks to all of you again!

Well, we're figuring a few things out...

We had Bug's teacher conference last week, and talked about several things. I hate to say it, but anymore I dread her conferences. I love her teacher, being in her room, volunteering, but man - conferences are just so hard. There everything is in black and white, what is good, what is bad, and for us, all the questions we still haven't found answers for. ;)

For starters, while she hasn't come home in the last couple of weeks with stomach aches, she has spent a lot of time not feeling well. (fatigued?) We have been doing twice daily Previcid as well as well as morning protien bar snack and sometime mid-afternoon snack. I feel at this point there is nothing more on my end that I can do. So, that leaves us with looking around the classroom and at the structure of her day again, and what could be changed on that front to help her more.

Her teacher did say she is spending a lot of time when she isn't feeling well in her bean bag chair. I asked if she did work in it, and she said some. I suggested that I bring in a travel lap table to see if she would do more in her bean bag chair with a good writing surface. She liked that idea, so I've got to look around for the one we used to have. It had nice padding on the bottom so it shouldn't rub her funny.

I still think that part of the problem are the chairs she has to sit in during class. They don't offer much support. I need to see what happens with this bean back/lap table and then possibly talk to her OT and PT about options for next year. I am also pretty sure that the cold weather makes her feel worse, which kind of sounds weird, but then again people with arthritis complain about joints in winter so maybe it isn't so strange.

Homeschooling has been on my mind more and more lately. In many ways I can see the benefits, but in other ways I think it could make things harder. Right now she has so much acceptance from her peers, I'm afraid if I remove her from that and then replace her with them later down the road it would be really hard. Also, the fact of the matter is that she likes school. She enjoys it. If we could just get around her body not keeping up with her mind... I think the reason I keep revisiting the idea is because I feel like so much of the work we do at home already, because she can't keep up in class. We do it in so much less time too, because I just write while she does the work to get the answers. I wish I could get her an aide... I think she would learn so much more. But we haven't got enough of a case yet to justify that, which is ok, because who knows, we might get this typing thing and seating all worked out and find some extra energy soon!

Gotta run, Bug just came in and isn't feeling well. She said she feels like when she doesn't feel good at school. Just doesn't feel good all over - like I said, I think it's fatigue.

Oh - I did want to add Bug has started e-mailing her best friend from our old state. He is e-mailing back and so they are both getting great typing practice in a fun way! :)

Good Typing News!

First of all, sorry for the long time between updates, I was so sick I didn't get online for almost two weeks. All is well again and I hope to get back on track. :)

Great news! The OT came yesterday and had bug do type the alphabet on her ibook. She sent the page home, with a note attached that she had done it in one minute - twice as fast as just two weeks ago. WOO-HOO! So she is catching on - and others are seeing it. I'm just so excited about this. :) My daughter was proud as could be too - she showed it to me as soon as she walked in. Good for her!

Not much else to update right now. The high protein morning and afternoon snacks I left at school seem to be helping a little, or at least I'd like to think so. I haven't had any calls to pick bug up since sending them in. She has still had tummy aches, but has been able to manage them between the snacks and resting in her King Beany bean bag chair.

So - all good news this time! :)

Interview with Dr. McDonnell

WOO-HOO! I guess all of the complaint e-mails, message board posts, and letters people have been sending to ABC are starting to pay off a little. Now they are posting Dr. McDonnell's full interview from Medical Mysteries. It's at least a start!

Part 1
Part 2

It is a long read, but full of good information!

Working on that Typing!

My daughter (Bug) has had an iBook at her desk for almost a week now. She really seems to be taking to it and enjoying it. The great thing is from what I can tell she is able to do about the same amount of work on it as what she could do without it - but now at least she is working towards a new goal. Eventually she will get better with the computer and then she will really take off!

I just want to say again how much I love her teacher! She is just so supportive, we will miss her next year!

Medical note - she has a rash that has been appearing on her upper lip area from time to time. I have often wondered if she is sensitive to something she is eating - also in part due to the stomach aches. The rash happened again tonight during dinner, so I took a bunch of pictures for our allergy Dr. I also cut the labels from the foods she ate. It's just yet another one of those crazy things that we don't know what it belongs to - sensitive EDS skin? Allergy?

This is the type of thing though that makes me feel like such an outsider at times. "Normal" parents wouldn't bat an eye at a rash - or, when they see it they go to the Dr. and get a simple answer. I feel like there are always strange medical things going on, and that they are all likely pieces of this EDS puzzle, but no one knows how they fit together. No one can prove they all go together. There is no manual that tells friends and family that you're not crazy, that your child really is going through this stuff and you just can't figure out why. Sometimes I long for the simplicity of not knowing, not being educated. But, that's just not how I am.

Anyway - I'm still working on those OT ring split pictures. Hope to post them soon!

Time to Move on...

Now that I've had my rant about ABC, I'm trying to get my focus back on what is really important, my family. So here's a little update about how our last set of appointments were.

Friday we saw the GI. Good news is that they want us to try to taper down on the miralax and add in fiber supplements. Yippee! Maybe we can get off of medication at some point this year - that would be GREAT! We talked about how many EDS sufferers have chronic constipation throughout life, and they agreed that we should try to find something more "natural" that she can use forever if needed. While miralax is pretty safe, no one wants to think a 6 year old will take it forever.

I also asked about Aloe Vera gel, as there are several people I've met who swear it is wonderful in helping with constipation. Let me stress here they were not talking about Aloe juice, this is Aloe gel. The GI didn't know much about it, but, he did say that he was ok with us giving it a shot and did not feel it would be harmful in any way. What most people say is that the gel kind of coats things and helps them pass. How true that is I don't know, but again, it just might be worth trying.

Then we got to the tummy problems. Basically they don't know what is going on, and so we are upping our Previcid to twice a day for a few months and then revisit. If we are still having problems at that dose, then they will want to do an endoscopy. While I am happy to have the script and something new we can try, I still want to really look at some of the other suggestions I've been given that are fatigue related. In my heart I still feel that is the root problem. I could be wrong, but sometimes you just have to go with your gut. Now, of course the fatigue could be effecting the valve at the top of her stomach, and then the acid is coming up. If that's the case, the Previcid is still going to help. So I guess it will be trial and error for a bit. Maybe starting with the medication and seeing what does (or doesn't) happen, and then try some other non-medical things at the same time or after.

After our appointment, we had just enough time to get some lunch and head back for our OT appointment with Keith. I cannot say enough how blessed we are to have such a warm, caring, understanding and funny OT! My daughter actually enjoys seeing him, even though she is really sensitive to the warm plastic when we make the rings. He is just so good and interacting with her and making her comfortable - I just wish more medical staff were like that! So, we had three new rings made, and he was able to adjust two for us that were bending a little funny. (like maybe someone stepped on them, LOL)

I did take pictures of the entire process this time. I've always wanted to, but finally got around to it this time. I will post them here to see - I think it's pretty interesting myself. So many people have asked how our rings were made because their OT's don't do them like ours does. They are limited to ordering clear plastic ones for their kids. So maybe they can see our process and get something similar. The cool colors make all the difference in how much my daughter enjoys them and is *proud* of them. I couldn't imagine having to have her just wear clear.

On the way home she slept most of the way. (It's an hour and a half drive). I just shows again how her endurance is so different from others her age. We didn't walk a lot, didn't even stand much, but she was just so worn out after all that. Just like she gets worn out from school.

Oh - just for record keeping, the OT was planning to come Friday, but we weren't going to be there. ;) I'm guessing we're back on track with that now!

Medical Mysteries SUCKED

I can't put into words how upset I am about ABC's Medical Mysteries show that had a segment on Ehlers-Danlos syndrome this week. If any of you saw it, you know exactly what I am talking about.
I am at a loss as to how to handle this now. So many friends and family watched (please don't have let great-grandma have seen) and that stinks. But at least they will kind of believe me when I tell them how inaccurate the show was. What worries me the most is all of the support staff that my daughter deals with on a daily basis who watched. UGH. I can't undo what they have seen, and now I feel like instead of having a blank slate to teach to, I have a misinformed community to try to change their views. That's a heck of a lot harder. Plus, I have to live with the fact that *I* was the one who made all of those calls, sent all of those e-mails, and had the meetings ASKING them to watch it! Because, I naively believed that ABC wouldn't air false information. If it had been E, or the SciFi channel, or something like that, I wouldn't have done it. But ABC? ABC is *supposed* to be a good channel with shows that have real information. I guess I was wrong.

I feel sorry for all of those people who poured their hearts, souls, resources, and time into this taping. Many of them belong to online groups I'm on. These are people who suffer daily, and yet they tried to take time and be well and helpful to ABC - because they were led to believe that it would HELP the EDS community. They put aside their own lives to try to help reach out to others and let them know what Ehlers-Danlos is, how to get help, and treatment. Now they feel terrible because ABC abused that, and instead wasted air time to put on garbage. Come on, no one can tell me that they are being serious and trying to help people when they show a guy with paper clips all over his face, stretching his skin in a circus, and walking his three-legged dog. PLEASE!

There are several groups working on getting this fixed. As I hear more I will post it here.

If you did not see the show - don't bother. Please.

It's always something...

List of updates since my last post....

First off, tomorrow night is the long awaited (not really, but it feels that way!) airing of Ehlers-Danlos Syndrome on Primetime's Medical Mysteries show. Woo-hoo! I can't wait - let's just hope that they show what most of us look like, not just the extreme cases. Check for air time in your area, most of us will have it either at 9 or 10. Don't worry, you can still see American Idol and learn about EDS - all in one night! Can't beat that, can you!?

Next up - last Thursday brought more tummy problems. Another early day out of school. Ugh. However, after posting to one of my online support groups, I came away with some wonderful ideas on things that could be contributing to the problem. Everything from fatigue, to her chair, bloating that makes her clothes rub, lighting, and more. I'll try to compile the suggestions here at a later date in case they are helpful to others.

Friday brought the OT - and my daughters first lesson in tying shoes with ring splints. How exciting! The OT also spoke with her teacher about getting her rolling with an ibook to try. They selected the ibook as the first piece of technology because the keys are the easiest to push. Great thinking! :) The only drawback is that no one believes she can type, (ok, her teacher does, but no one else) so no one wants to put time into teaching it to her. So, even if she takes to the ibook, it won't do her too much good because there will still be an expression barrier.

So, I have a new goal, to teach her to type. I'm going to prove everyone wrong. There is no reason that she can't be taught to type, kids her age can play the piano and it's the same type of thing. (no pun intended - hehe). I am determined to show the world that she has at least one strength for each of her weaknesses, and that we need to spend more time looking for and encouraging them. Just like blind children learn to read with braille, I'm sure my daughter will embrace a way to do her work and express herself as long as a reasonable way is shown to her and encouraged. She loves to learn, loves school, and is bright as the rest of them.

Other highlights...

Trip to the hospital OT on Friday to get new ring splints made.

And equally important - I found another pair of pants that look "normal/stylish" that are without zippers or buttons! This time they are from Old Navy, and are part of the spring collection. Lots of different colors to choose from too. The verdict is still out as to how easy they will be to get on and off after washing, but provided they don't shrink too much I think we'll be in good shape.


More notes, and why it isn't fair

After a pretty non-eventful week (minus a bit more fatigue than normal) we had stomach problems again, to the point where my daughter made several trips to the office and finally came home. She had some diarrhea at school (although I don't think she told them) but didn't have any once coming back.

She took a long soak in the tub, rested a bit, and had a snack. By 4 she was fine again.

Sometimes I just don't know how to deal with this. I guess I just keep doing the best I can.

Other things of interest...

After her bath I noticed several areas where her skin was getting really dry. We broke out the lotion Santa left in her stocking and she has been applying it over and over and over again ever since. LOL I am thinking I need to make a little kit for her to take to school, one with a small lotion, her favorite anti-itch stick, and maybe some sunscreen. I'm sure I'll think of some other goodies to go in it too, like maybe some crackers to try when her tummy hurts. I'll keep thinking about it a bit longer before trying to actually put it together. I guess I should mention that she gets really upset when her body is dry, itchy, or sore. So having those things around might help, although it might be distracting as well. I suppose I'll ask her teacher what she thinks.

I spoke with our genetics nurse today and she is sending a medical note for the school. I'm excited to get that, even if it's just for our files. I also let her know about Ehlers-Danlos Syndrome being featured on Medical Mysteries, which I have an air date as Jan. 24th.

Another thing we have coming up is a visit with Keith, our "ring doctor". He's actually an OT in the Rehabilitation Specialties clinic at the University Hospital. My daughter just adores him and is looking forward to going. A couple of our rings aren't fitting, another one is loosing it's form, and today we might have lost one. (hopefully it shows back up) We seem to be keeping true to visiting him every two months for a ring or two. Not too bad!

On a final note still no Occupational Therapy this week, unless they come on a different day from usual. I'm disappointed, as I really think we need to be getting started on trying out different assistive technology. My daughter is plenty smart enough to be doing the same work as her peers, and it is frustrating to have to settle for her to do less because her hands can't keep up with her brain. While I don't mind that for a period of time, we are now more than halfway through the year and I am growing impatient. I know the IEP was just written in December and I need to give it time. But it's so hard when I know it's going to take time to even try out the technology, let alone find a computer-type machine that she really takes to. Then getting her used to it and deciding what work can be done on it... Etc. I feel like even if we found the perfect machine tomorrow it would still take until the end of this school year to really start getting the benefit from it.

I hate whining, but I guess I'm just in one of those moods. You know, the kind where you just want everything done yesterday and you're not in a position to make any of it happen yourself today, tomorrow, or even next year. I hate being at other people's mercy when I know there are things that could help her now, if only there were the time and resources.

It just isn't fair.