So - Bug has now been off of dairy since last Thursday night. She has not had a stomach ache since waking up with one Friday morning. I find this very interesting, although I have to wait longer to be 100% sure they are gone. Of course, she was off dairy all summer and also didn't have stomach aches. Which takes us back to the original question I had walking into our allergy tests this fall. Is she allergic to dairy, or, is she allergic to something else that is getting eliminated when the dairy is removed????? Unfortunately my awesome allergist left a few weeks before our tests, and the new allergy Doctor was horrible. They did not test her for even half of the most common allergies, even though I requested they test for any and everything common. I could go on and on about why the visit was so horrible, but my blood pressure is rising just thinking back on the experience. It included lying to Bug and I about shots being given during the test, pinning her down while she screamed, not timing the test properly, and not talking to me like an adult parent who knows something is wrong with their child. It was a *horrible* experience, and I will not *EVER* take my daughter there for allergy visits again. As much as I love the University of Iowa Children's Hospital I have no faith or respect for allergy department now that Dr. Abu-Hassan is gone.
But anyway, back to my main point. I do not trust the testing that was done, especially since the timing was off (the rushed it due to Bugs horrific non-stop screaming) and the milk reacted right after the nurse left the room. The reaction was raised, really red, and large. She stuck her head in and I pointed out, and she said she'd ask the head nurse to come check on it. No one came for almost a 1/2 hour, and it was the allergist. He told me it "didn't count" because the reaction came after the testing time. He refused to listen to anything I asked or said, and told me she's probably just lactose intolerant. So, in light of the fact that lactaid doesn't seem to do a thing for Bug, that milk seems to be causing/aggravating her problems, I have to sit here and question if that test was really right or not.
I suppose it doesn't matter, except it would provide me with a little closure and a better idea of how seriously to take the dairy stuff. Regardless of if it's lactose intolerance, an allergy, or just a sensitivity if it makes her feel bad we should avoid it.
So, time will tell. I am going to play around and try adding a couple of foods back at a time and see if anything happens. In the meantime as I write this my daughter came down with a stomach ache. It started 1/2 hour ago when she took 3 bites of a homemade cheeseburger.
Now - on to the GREAT news! I cannot say GREAT enough either. GREAT GREAT GREAT AWESOME AMAZING news! Can you handle it???????????????? I almost couldn't!
Bug saw the dentist today for the first time in over a year. The last visit she was screaming and crying and it was awful. As those of you who have been following this blog for awhile know, she has been in therapy for over a year now to deal with medical anxiety. Apparently it is working! She requested to have a dental appointment when her brother was getting his teeth cleaned a few weeks ago. Today was the day - and we made a deal before she went in that if she didn't get upset during the appointment we could skip the fluoride. (she had told me that was the worse part - and I figured that skipping that was not a big deal if it meant getting her teeth cleaned and also a positive experience under her belt) Well, when she came out not only was she smiling and happy, but she had done x-rays, a cleaning, dental examine, and FLUORIDE! The hygienist had asked her if she would allow her to brush it on her teeth instead of a tray, and Bug agreed. I was in shock, and I swear to you, I almost started crying when the hygienist came out and told me.
To many this probably sounds silly. To those of you who have medical anxiety or a child with it you'll understand how big of a deal this is. Bug is always going to be seeing Doctors for various reasons as she grows-up. It's part of the Ehlers-Danlos syndrome. She'll have the geneticist, her OT, the GI, allergist, and if/when other things happen PT or other specialists. She doesn't have the luxury of being like other kids. She can't afford to be afraid of the Doctors who are there to help her. That's why we've made the trek to Iowa City for a therapist who deals with this type of anxiety. Today I really saw that paying off. Bug seemed to be anxiety free and happy during the visit. I am thankful, relieved, and proud all at once. In fact, I might even be glowing. Can you see it??? hahahaha
We go to therapy this week and she said she can't wait to share her experience - neither can I!
Monday, December 15, 2008 | | 6 Comments
You know, it never fails that I think we are past something and there it comes again! :) We have been battling stomach problems again for almost three weeks now. I'm at the point where I feel like quitting again. I know, I know, you've read that before. I burn out, take a break, read like crazy, get hopeful, and then crash again. No, I'm not bi-polar. I'm just a Mom who wants to have her daughter simply feel "good" on a regular basis, and it just doesn't ever seem to work for long. Thank you Ehlers-Danlos Syndrome. You suck.
So, let me stop whining for a moment and try to sort out what's been going on. Sometime not that long after my happy post about how great Bug was doing the stomach aches started again. Now, changes that have happened prior to them starting again are as follows:
1) We saw the GI and cut her Prilosec in half
2) We started to reintroduce dairy, limiting her to only a milk at school each day - and a lactaid with that milk
3) It got cold (hey, things do seem to be worse with her in the winters - just read back in this blog and you'll see it too!)
4) We started eating more processed foods again, since we were no longer worried about dairy
5) She started having a sugar-free juice at lunch instead of milk
Ok, so those are the changes. Now, the first thing we did after the stomach aches returned is get rid of the sugar-free juice. As it turns out it was made with Splenda, which can cause horrible side effects INCLUDING stomach pain. Google it - I was shocked when I called the GI and she told me about it.
At first I thought it solved the problem, but it's back. To complicate things the flu is going around and anyone who has a kid with stomach problems will understand me when I say I have no idea which is which until the puking begins. However, there are strains of the flu that don't cause puking.... Anyway, over Thanksgiving I thought she had the flu. Stomach pains for 5 days, not feeling like doing anything because the pains were so bad. She had a couple of OK days, and then BAM, we are back to stomach pains again!!!
I am at a loss here. Starting tomorrow I'm pulling her off of dairy again to see if we can get this thing to stop. That causes a chain reaction because it means no mac and cheese or other processed foods. (which I know is a good thing, but gosh darn it, convenience really saves me sometimes!) I guess I'll give that a week and then call the GI if there is no improvement. Something I really don't want to have to do - I want my daughter better, not on more meds!
Anyway, I'm going to stop complaining about that now. :) Everything else is going ok with her right now. We didn't have our IEP meeting yet as school got dismissed early that day for a huge winter storm. We are now having it next week. I still don't know if we are rewriting the IEP for next year or moving on to a health plan, but that's ok, I am still comfortable with either one.
I think that's it for tonight - tomorrow my 12 year old non-ehlers-danlos child is getting his braces. I need to rest up and get myself prepared to experience this milestone with him! :)
In less than a month we'll be having Bug's yearly staffing. Usually by now I'm combing the internet searching for answers to problems we're having or trying to find new ideas of things to try that might be helpful for her. However, this time not only am I sitting back just killing time, but I actually did something wonderful yesterday. I spoke to Bug's occupational therapist from the school and asked her directly where we were at. I said "please tell me honestly how you feel, I will not be upset if you don't think we need serviced any longer." If you have ever dealt with "the system" before, you know how risky a statement like this can be!
I think I took her a bit by surprise. She replied to me that she could continue to work with Bug on the Dragon Naturally Speaking, but beyond that she didn't see a need for OT services. I agree with this, and see it as a good thing! I told her I was perfectly happy to continue the Dragon at home on our own (especially since we are luckily not at point where Bug needs it). So - she is going to check with the Physical Therapist and see where Bug is with her. If she still needs servicing, we'll continue the IEP. If she does not, then we'll put together a health plan that addresses her medical needs and then they will keep an eye on her in case anything crops up.
I suspect if I had just shown-up for the meeting that the servicing and IEP would have just continued. But I honestly don't want to waste resources we don't need. I see it as a good thing if Bug is at a point where we can move beyond the IEP - as long as we are still able to have her medical needs met. I love her school and feel comfortable at this point whichever way it goes.
So what does this mean? It means that Bug is doing well! Yes, we are still having bumps in the road, but overall this is the best school year that she has had to date. She is keeping up with her peers, not needing a bunch of snacks or breaks, and hasn't missed much school at all. I hope that continues all winter! LOL We are not due back at the GI until near the end of school, we don't see the geneticist this year, her ring splints are still fitting great - so no need to see the hospital OT, we haven't needed any phyical therapy at the hospital, her allergies and asthma are under control, and while she is still seeing a therapist to deal with the medical anxiety - she is making lots of progress. All wonderful news!
Of course, we're not "home free", but I am so thankful that we seem to have gotten to a point where things are under control. The accomodations at school (special chair, beanbag for resting, grips for writing and coloring) help, her tummy hasn't acted up even though we reduced her medications, and her energy levels are up. We are still struggling a little with how much lactose she can tolerate (she is trying lactaid at school for the first time today with some milk) but that's easy compared to what we have been through!
So - I see this staffing as a milestone. It is the first time I have seen my daughter thriving to the point where I don't feel I need to be researching and preparing for this meeting. I am SO thankful for that, and I have faith that her support team will help make the right choice as to what she needs now. :)
Thursday, November 13, 2008 | | 1 Comments
Tonight Bug was sitting playing a video game when she suddenly said "ouch - my thumb just popped out". To my amazement, she then tried to bite the joint. When asked why, she informed me that "this is what I usually do when this happens." Mind you - this is all new news to me!
Apparently the gnawing on her thumb wasn't working as she came and sat on my lap telling me how much it was hurting/bothering her. I tried to gently manipulate it, but gosh darn-it, I have no idea how to relocate a thumb! Where is the instruction manual for that? LOL Anyway, she took her thumb back, rubbed it a little, put it back in her mouth and said "got it!" So I guess she knows better than I how to handle the situation. It's a weird way of doing it, but if it works, I guess that's ok, right?
I was surprised by two things. First of all that this has been happening for awhile and that I had no idea! Secondly, that she knew how to deal with it and thought it wasn't a big deal. Painful, yes, but something to freak out about? No. To her, it's annoying, but "normal".
I cannot believe that I have not posted since August - but I just didn't feel like blogging. Then suddenly today I felt like sharing again, so here I am.
Let's see, since my last post Bug turned 8 (WOW - she was diagnosed at 5), she started 3rd grade, we did lots of fun family stuff and she's now completed her first quarter at school. Report cards and teacher conferences will be next week. Gosh, time flies!
She is doing well in school. The PT and OT are still seeing her although I'm not sure how much. She is involved in Girl Scouts, taking vocal lessons, and she is about to finish her "cheerleading" class. It is very low key, no jumping or gymnastics type of stuff. Just chanting and clapping. She is asking to take swim lessons again, but she also wants to go to the after-school program at church, so I just don't know how we could fit all of that in! I am happy that she is involved and finding activities that she enjoys and are healthy for her.
Now the not as fun stuff. She sprained her ankle in gym class a week ago, by tripping on the floor. Whoops! :) I think most EDS'ers see the humor in that. EDS'ers tend to be a bit less coordinated than the general population. So, she's in an air cast splint until the end of this week. It seems to be healing up nicely and she is now walking "normally" on it again.
As some of you know we're having some issues with her speaking up for herself and her needs. She didn't ask for any ice when she injured herself, even though she was hopping around all day at school. The teachers thought she was fine because she didn't complain, which she wasn't. I did speak to her main teacher the next day briefly and let her know that Bug isn't a complainer, but I also spoke to my daughter and stressed it was up to her to take care of her needs. That she should always ice any injury. I thought she got it, but then two days later she had another incident.
Bug came home and was telling me how badly she had to go to the bathroom at school, but that she couldn't because she'd loose a "coupon". I asked if it was close to recess (when they wouldn't loose one) and she said no, she had to wait a long time. Upon further questioning, I found out that she didn't even ask the teacher to go, she was just assuming that because that is what the teacher had said to the class in general at the beginning of the school year that it also applied to her. I explained that she could go whenever she wanted because she has a Dr. note, and I asked if she wanted me to talk to her teacher. She got really upset and said NO!
So - I think we have a bit of an issue right now with not wanting to draw attention to herself, or wanting to make herself any more different than her peers.
We are also in the process of trying to find acceptable clothes for winter, which isn't easy when you are looking for items that are easy to get over your head, pants without zippers or buttons, coats with easy zippers, etc. Plus, it has to be "trendy" because we're at that age. ;) I have managed to get two pairs of jeans that have no zippers or buttons which are very trendy (complete with sparkles on the pockets) but that's been it so far! I am going searching again tomorrow and hope to find some more clothes. If I can't she'll end up with several pairs of the same thing, which is better than not having any jeans. We're tired of living in sports pants/sweats.
So, overall things are going well. Sometime in the next month we should be having our IEP meeting and I'll get to hear what the plans are for the upcoming year. Should be fun, right???
Oh - I almost forgot! We see our new GI on Friday, so cross your fingers we all get along! Ok, I'm done now - for real! I'll try to update again soon!
You know, I just hate how you think things are difficult and then something else comes along and just proves that they could be worse! Tonight Bug was ok going to VBS knowing that she might not be able to eat the snack (we packed one for her in case) and that she couldn't have a snow cone. She was fine with that. But when we picked her up, she was a basket case and refused to get into the car unless we let her get a snow cone. This isn't my child, mind you. So, I put my mean Mom hat on - you know, the one I typically only have to use with my older son, LOL, and told her she could have a plain one and a treat at home. She huffed and puffed and finally went and got it, returned to the car, and was back to her happy old self. (you have to hate self-pity, but I certainly can relate)
I felt tired from the battle, sorry for her, and yes, a bit sorry for myself again. I was thinking of how I was going to get her bathed, her hair blow-dried, and her non-dairy cupcakes made for summer school all at a reasonable hour. It was already almost 9 by the time we got home from Vacation Bible School. So, I went about getting her in the bath, washed her super cute first short haircut she got this past week, and went and sat on my bed waiting for her to finish soaking. Next thing I know I hear her choking, and I run in and start banging on her back. As she's struggling, she manages to say "inhaler". Suddenly, the light went off and I started screaming as I ran down the stairs for my husband, screaming with no one answering. Our master bedroom is in the attic and I made it all the way down to the first floor still screaming with no answer. As I'm banging around the kitchen looking for the rescue inhaler, I'm still yelling, and finally my husband annoyed shouts "what!" from the basement. He was putting in the laundry. I'm yelling and banging and not finding a darn thing and somehow I finally get across to him it's an emergency and he comes up. Why he didn't realize it as I came running down two flights of stairs screaming at the top of my lungs I don't know, LOL.
Anyway, I yelled for him to go watch Bug while I tried to find her stuff. He runs up and I finally find the emergency bag. I run back up to the attic, she's still not able to really breath and her skin coloring was getting all patchy and "off", and I put the mask over her face and push the button on the inhaler sending in the meds. She started getting better, I pushed it again and she looked even better still. A third time and I was comfortable stopping. She starts breathing more normally, and I asked what happened. "Nothing" she said. "I just was laying here and then I couldn't breathe."
Up until that moment, I was still convinced she had choked on some water. But, there was no denying it anymore, she had a full-blown asthma attack. The first one we've ever had that bad. And she hasn't even used an inhaler in over 2.5 years. What's up with this?
So - add asthma back on the list. I thought maybe she'd outgrown it, but I guess not. The only thing I can think of that might have triggered it was our dog went to a new groomer today which was in a vet. So she might have been exposed to some cat dander. However, I have noticed her barking off and on this week, but had sold myself on the fact that it might be a summer cold or something. I guess not.
Our new allergist is just going to love us. Boy oh boy, what a visit it will be next week! Well, I'm of to attempt making these dairy-free cupcakes, if anyone deserves and awesome birthday tomorrow it's my Bug!
This is more for my own note keeping, so sorry if it's boring. :)
Bug has had horrible tummy pain both last night and tonight. I suspected that it came from the snow cone she had at vacation bible camp last night, so I warned her tonight that it might be the problem and to try another flavor and we'll know for sure. Well, she had Blue Raspberry last night and tonight it was Cherry. Both had the same result. About 15 minutes after finishing her treat she had horrible pain in her right side, just under the rib cage. On top of that, she was telling me her tongue was numb after eating it. I looked in her mouth and it did not look swollen. I ran my finger along the top and she said she couldn't feel it. Then I scraped it a few times and she still couldn't feel it. (according to her) I kind of pushed my nail down on her tongue and she went "ow"! so she felt that. She told me it must be because of the snow cone being cold, but her tongue did not feel at all chilly and it had been over 30 minutes since she finished her treat. I'm a bit concerned and will bring it up at the allergy appointment in just over a week. We already have an epi-pen for her due to tongue itching and swelling in the past, but we still don't know anything about what caused it. So, maybe this will help us get a step closer to some answers. Of course, maybe tongue numbing means nothing, I just don't know.
Back to the stomach pain. We could not get rid of it last night. She drank a lot of water, had a small snack, and just whimpered in pain until she finally fell asleep. She still felt off this morning when she woke, but after getting up and eating (and having more medicine) she felt better and headed to school. This is different than most of the pain we've been having in recent months. Usually the pain is above the belly button but below the sternum. Sometimes it is around the belly button or goes up above the sternum. Again, I think this might be important for our GI appointment so I want to write it down while it's fresh in my head.
Also, she has complained a lot more about feeling like things are "popping" this summer. Those are her words, not mine. This is a 7 year old, so what a pop is to me might not be at all what she is talking about. That makes it tough. On top of that, she gets upset if I ask too many questions sometimes, because she feels I should know what she is talking about - that she is being perfectly clear. LOL So - all I know is that sometimes she hears a pop (as do I) and there is pain at the same time and after. Other times she says she pops but I don't hear it, and she says she feels and hears it (and it is hurting). If that is the case, then the pop isn't very loud. And of course, there are times when she pops and we hear it and there is no pain. She's had popping in her knees more recently, her foot/ankle?, shoulder, and elbow. Those are the places that I can remember right now. I think they are the most common.
Luckily, her hips seem to be pretty happy right now. I think we've only had one minor flare-up since she did her physical therapy last winter. Woo-hoo!
Another thing I want to remember. She seems to have regressed with being able to get her shirts on and off by herself. She has better luck getting them on, but still struggles with that. Getting them off by herself is rare these days. I don't know what to do about it other than talk to her PT when school starts and see what her thoughts are. It still amazes me how quickly she looses a skill set if it isn't practiced every day! With the shirts it seems to be the difference between the loose fitting shirts of winter and the more form fitting shirts she has been wearing over the summer. Just that difference in clothing has made it very hard for her to change her shirts.
Anyway, I think that's the bulk of it for now. Ehlers-Danlos Syndrome is such a complicated condition!!!!
Today started out as a great day, Bug was going to go window shopping with Grandma and I to show us what she was wanting for her birthday. It's not for a couple more weeks, but her Grandparents wanted to celebrate with her while we are here in town. We started at Old Navy, and then needed to make a decision on lunch. Since it was Bugs special day, we asked her where she wanted to go. She just couldn't decide, and kept saying things like "normally I'd want Panera, but I can't have my favorite soup" and "I love Frappuccino's, but they have milk". Finally Grandma had a great idea to go to the Rainforest Cafe (Bug had never been there) and so we just went. Although she enjoyed the animals, she wasn't her normal cheerful self. Being that it was in the mall, we stopped in a couple of stores right next to it and then started walking to the main area of the mall. Bug just wasn't happy, and kept lagging behind. My Mom and I wanted to stop in a store and browse clothes for a couple of minutes, and she didn't want to. I made her come and stand inside, while I had a quick look. Normally I would have skipped the store, but I have to attend a business party on Saturday with my husband and didn't pack anything to wear. (duh) Anyway...
We continued about three more stores down, and stopped to get a directory. Bug sat next to me on a bench, and my Mom went to sit next to her. Bug got up and sat on the other side of me, which apparently offended Grandma. At that point Grandma announced that it was obvious that Bug wasn't having fun, and she wasn't having fun, so we should just leave. Bug said she didn't want to go home, but that's what we did.
Grandma gave Bug a lecture in the car about how it was obvious Bug was upset with her, and that was fine, but that we shouldn't be shopping if we were unhappy and when she was happy we could go back out. I just didn't say anything and neither did Bug. When we got back she went down to play with her brother, and I slept for a half hour. (escaping reality? LOL)
While I understand where my Mother was coming from, I also think I understand Bug. This was our first shopping trip out since going dairy-free, and she was upset because the things we traditionally do on those trips she couldn't. We make a big production about going to Iowa City to counter the fact it's to see Dr's. So we go shopping, to Panera (for broccoli cheese soup), and get a Frappuccino. We always do it. She looks forward to it, and it's taken us a long time to even find a place she would eat. (she won't eat so many foods) Being a vegetarian in a meat eaters world, I think I know how she felt. There are times I get grumpy because we are going out and I know I won't get to enjoy where we're going. It's especially upsetting when you don't get to go out often.
What stunk was how it all played out. In some ways I felt bad because I wasn't prepared for this. I didn't think about it ahead of time and have a plan. I could have just picked somewhere and not even asked her, which I do think would have helped. But - I'm still getting used to this too. Also, I do wish my Mom had dealt a little better. She just gave-up, and assumed that Bug was bitter that we went into a store she didn't want to go into. While there might be some truth in that, it wasn't the main reason. At least I don't think so.
Of course, I could be wrong. Every kid has their moments. I guess that's why I didn't say anything when Grandma had her lecture. I just let it play out. The truth of the matter is that it really doesn't matter what I think. Other people are going to see what they want to see or are used to seeing. Unfortunately, this means that Bug might get lots of lectures that she might not really need. So am I doing her a favor by letting it play out (safely) now so she knows how to cope, or am I letting her down by not sticking up for her? Grandma wasn't mean-spirited, but what she said was hard hitting on its own.
What a fine line it is balancing between living life as a "normal" person and protecting my daughter because she isn't "normal". While food was the problem today, tomorrow it might be an invisible ache, or just general fatigue. I know Bug is in the process of learning a big life lesson right now, that life isn't fair. That she is different. And that while sometimes it is ok to feel sorry for yourself, you then have a choice to make - to hide in a corner and let life pass you by or to put your chin-up and live for all of the other wonderful things God has given you. I can only hope and pray that she will choose to fight and see the good, and that I can be strong enough to set that example for her.
So, tonight we talked about making choices to move on after we feel bad. I think she understood and I hope she'll be able to talk to me about things like this in the future instead of just getting grumpy. And most importantly, I hope that she knows that above all else I love her and am on her side, even on the "bad" days. :)
I thought I'd pop in and give a small update since it's been a couple of weeks. Things are moving along nicely for summer. We've been practicing our OT stuff, hitting the pool, and having lots of family time. We've rented several games for the Wii, the interactive kind. Bug really enjoyed Carnival Games, and Playground Sports. I just have to say again how nice it is for her to be able to "play" games that she can't play in real life!
Currently we are up in the Chicago suburbs visiting her Grandparents. Last night we all went to see the Beach Boys at an outdoor concert. It was so nice, because we had lawn seats (meaning you show-up, claim a section of lawn, and put our your chairs, table, picnic table, etc) so Bug could stretch out and move as she pleased. I cannot imagine her being comfortable in normal seating, but she had a great time and was happy the whole 4 hours we spent there. I'm sure it helped that the kids who live next door to Grandma were in the spot next to us! :)
While we're here we are also planning to hit Milwaukee for an afternoon, and then head into Chicago another day to see the musical Willie Waunka and the Chocolate Factory. Combine that with the massive amount of shopping we've been doing and it makes for one fun trip!
We got our allergy appointments rescheduled at the University of Iowa. We were supposed to see several people in the middle of the flood. I still need to make a couple more appointments but I'm excited to have allergy scheduled because Bug is asking for food allergy tests. She's been off of dairy most of the summer, and it has really helped with the stomach aches. The thing is, she's not getting lower stomach cramps, loose stools, or gas when she does have dairy. But she gets horrible stomach pain. Allergy? Lactose intolerance? Who knows... Nothing is ever clear cut and "by the book" around here. But she wants the allergy tests to see if she really can't have milk or not, so I'm jumping on it. I'm crossing my fingers she actually goes through with it when we get there. If she does, not only do I hope it provides some insight as to why nothing seems to help her stomach, but I also hope it is another leap forward with her anxiety. I sure do hate all of these little "unknown" pieces of Ehlers-Danlos Syndrome!
Another thing going on is she's had shoulder problems twice in the last two weeks. Once she was sitting on the shoulder and moved slightly, causing horrible pain/discomfort. She wouldn't even allow me to touch her to try to help. This morning she woke-up with something similar going on. It's been about an hour now and she still is hurting. Right now she's trying heat on it and she says it helps a little. Of course I forgot the childrens Advil. I think we'll have to run out and get some in a bit. I packed everything BUT advil. Figures!
I know I'm forgetting stuff, but I'm signing off and spending time with my family. I'll check-in later!
It's hard to believe that school has been out for over three weeks, it seems like we just finished! During that time we've been working on Dragon Naturally Speaking 9 Preferred every few days. I got really lucky and found it brand new on Amazon.com for $139.99 plus free shipping, and a rebate if you have an older version of Dragon. I don't, but I'm going to get one used for under $20 and mail in the $50 rebate still saving another $30. What a wonderful deal!!!
We've been making great progress using tips that Jim at iCater has given us as well as our AEA OT's feedback. Some of the things that seem to be helping the most are making sure Bug speaks slowly, having a USB microphone, and training missed words about 7 times before attempting them again. I find this helps because it allows for variances in Bug's speaking patterns. We also have a separate morning and evening profile, as she seems to speak much more clearly in the morning. Our OT suggested at our last visit that we do a volume test each time we use the program so we're going to start doing that too.
Another tip is creating a folder full of documents that have commonly used vocabulary. For an adult you wouldn't need this as much (I wouldn't think) as Dragon scans your computer and e-mail for commonly used words. For Bug, she isn't the one using my computer and she's only 7, so I made the folder and went online and searched for "commonly used 3rd grade words" then 3rd grade spelling words, and finally vocabulary. After than I went backwards and looked up second grade, first grade, and kindergarten. When I get a little more time I'll do forth grade as well. By filling a folder with those words and pointing Dragon Naturally Speaking to it we're hoping it will help it learn Bug's words more quickly. So far so good!
Before Dragon arrived our OT had Bug practice reading sentences into a tape recorder. She would then play it back so Bug could hear and decide if she was doing a good job speaking clearly, too loudly, etc. It was a great exercise and I highly recommend it for anyone who might be thinking of working with their child on voice recognition software. We also had the most success and interest when we made a sheet of sentences about Bug - what she liked, funny things about her brother, etc. She enjoyed reading them and I think that helped keep her enthused while we have been working some of these glitches out.
What we've been working on lately to help train the program have her read stories to it. Currently after she reads I go back an edit the file, save it, and save her user profile. As she gets more accustomed to the program we hope to have her do the editing with voice commands. But first it has to know her voice better. :)
While we still have a long road ahead of us, it is really promising. Dragon Naturally Speaking is understanding her when she uses the tricks we've taught her, and it isn't doing a lot of jibber jabber like when we first tested it. If we can keep her interested and happy training the program (and training her way of speaking to the program) I think this will be a wonderful tool that she'll be able to use on her own before too long. This could be a great tool for other kids with Ehlers-Danlos Syndrome or other arthritic conditions that effect their fingers or hands. It just takes time and patience!
Friday, June 27, 2008 | | 0 Comments
Ok ladies and gentlemen - drum roll please!!! Here is the article that appeared on the FRONT PAGE of our local paper, complete with two awesome pictures of my daughter! I am so excited about this - yippee! The only complaint I have is that they subtitled it a disease, which it isn't, but other than that is a great article for the general public. :) Now, because this blog is so personal and does mention cities and other personal information, I have to edit out a few identifying items in the article. You know, our real names, city, that kind of thing. I hope you understand!
By L. Jacobs
(Mom's name)'s 7-year-old daughter looks like any other healthy child her age, and that, (Mom) said, is part of what makes it hard for others to understand Bug's Ehlers-Danlos Syndrome.
"Ehlers-Danlos syndrome is a hereditary connective tissue disorder, and it affects the collagen in your body, so you basically have faulty collagen, " (Mom) explained. "That means not only does it affect the skin and the joints, it also can affect your lungs and your stomach, and your GI tract, your heart, basically pretty much anything inside of you."
The most common form of EDS affects around one in 10,000 to one in 15,000 people, according to MayoClinic.com.
Bug was diagnosed at age 5.
"She was in kindergarten and (name) was her teacher. She noticed that she was having problems with some fine motor skills, and the thing that really set off the alarm was that she couldn't open a water bottle even though the cap wasn't on tight," (Mom) said.
After meeting with the Area Education Agency's occupational therapist and her doctor, Bug was referred to a connective tissue specialist for diagnosis.
Since that time, Bug has worn ring splints to provide stability for her fingers.
"Her fingers without them basically flip straight back, so it makes pinching really difficult for her - picking things up. " (Mom) said. "They have been a Godsend. They make the biggest difference, and she wants to wear them because she knows they help."
Until this year, Bug wore 10 plastic splints around the top joints of her fingers. She now has a silver set dolled up by (name), a jewelry designers and friend of (Mom)'s, who added pink and purple beads to the bracelets holding the thumb splints in place.
But mostly, (Mom) said, "It's all about preserving her body for the future. The more careful we are now, we're hoping the least amount of pain she'll have as she gets older, which is hard because second-graders want to play and be active. "
"It's just a constant struggle. What is OK and what isn't?"
Cans she do a jumping jack in gym class, jump on a friends trampoline or go to a roller-skating party?
Those are the questions (Mom) and her husband (name) have to ask themselves and answer for teachers and friends.
"We're all learning as we go because it's not something anyone [here] has really dealt with before," (Mom ) said. "We're blessed in a lot of ways that the schools here are so small because being at (school name) and finding out in kindergarten, we have a very close relationship with everybody there, and they're all on the same page. "
(Mom) said a lot of time has gone into making arrangements at school.
"She doesn't necessarily have the stamina that the other students have, but her cognitive capabilities are the same, so we've spent the last couple of years trying to find ways for her to have the same cognitive stimulation and same output as the other students, which is difficult when your hands are constantly fatiguing," (Mom) explained.
Right now, Bug is experimenting through the University of Iowa with assisted voice technology as a potential tool to help her through third grade next school year.
Through it all though, Bug remains "an amazingly positive and caring little girl, " (Mom) said.
"So many awesome people have touched our lives," she said. "I don't think Bug would be as well-adjusted and as happy without them."
Thursday, June 12, 2008 | | 4 Comments
Today was quite a day! After posting to Girl, Dislocated (my favorite blog) last night that I'd given up on our Ehlers-Danlos article getting published in the local paper I found out today that it is! Our local paper sent out a photographer to get a picture of Bug. She ended up taking a ton, some doing a puzzle with her Grandmother, some with her toy poodle, another in her room. I have no idea what she will use, or even what the article says. I don't even know what angle the article is taking since I tried to give them as many angels as possible. It doesn't even matter, I'm just pumped!
To top things off, this came on the heels of an interview with a friend of ours who is finishing her teaching Masters. She has a paper to write on either a person with a disability or a parent of a child with a disability. She had asked me if I'd like to be interviewed and of course I jumped on it. She wrote some awesome questions, and I spent over an hour answering them. The coolest part was the reason she asked me was to help us educate other people about Ehlers-Danlos Syndrome. She knew that few people had heard of it and decided that it would be great to share something different with her class and in turn help Bug and I. I just thought that was great. I am really excited about this as well since her paper is being shared with people in the educational system it could reach some incoming teachers (as well as current ones) and let them know about some of the ways we've worked accommodations out for Bug.
I have never advocated in these ways before. Depending on how it turns out I might try to do more of it. :) It's amazing how I've moved from worrying about educating myself, to educating our school, to the AEA, to working on this blog, and now have done two interviews. I would have never guessed this is the path I would be led down even a year ago. It's just my desire to help others like my daughter just keeps gaining more momentum and so far I'm still embracing it and seeing where it leads me. Of course, I could change my mind after I see the article! LOL
Wednesday, June 11, 2008 | | 2 Comments
This past weekend my husband and I got into a bit of a disagreement. Bug was invited to a sleepover birthday party, and they decided the night before that they wanted to take the girls bowling as well. Obviously, this was not a good choice for her, as holding a bowling ball is 1) Too heavy and 2) Not good for her fingers 3) I'm not even sure the splints would fit in a ball without getting stuck! So, I called the Mom and told her I wasn't sure Bug would attend that part of the party and that maybe she could meet the girls after. She was okay with that but said she was welcome if she wanted to sit and visit with the other kids. I told her I'd leave it up to my daughter.
I asked my daughter and to my surprise she wanted to just sit and visit and be a part of the group even though she couldn't participate. As an adult, I couldn't see the fun in that and thought surely it would be upsetting, but she was fine with it. I decided that it was her choice, and to let her attend and watch. Well, my husband was not too happy with that, and thought it was a very bad idea, sure that it would be upsetting to her and a bad experience. I told him that I felt strongly that it was Bug's choice, and that she would have to make choices like this her whole life. It's up to her if she wants to miss out or if she wants to participate the best she can, even if it's just watching. We can't make that choice for her, and the sooner she gets used to making it the better. I feel like if she can find a way to make things work for her and accept her differences now it will be much easier as she grows up more. We shouldn't push our issues on her - if it doesn't depress or upset her then we should be happy for her. He gave in, and Bug went bowling.
I wondered how it would go during the 2 hours they were supposed to be out. I'd be lying if I didn't admit I was a bit nervous that she would decide it was upsetting and feel left out. So, I was shocked when I got a phone call from her all excited (almost to the point where I couldn't understand her) telling me she had gone bowling. I said "you what?" sure I had heard wrong, dread filling my chest. "I went Bowling" she happily replied. "I got to bowl the ball and everything!" She went on to tell me "they had a machine that rolled the ball for me so that I didn't have to hold the ball at all!!!"
She had a *wonderful* time - and we looked up online what she used to bowl. Apparently there is this assistive device that allows people who can't hold a bowling ball to bowl, and this particular bowling alley had one. I had no idea such a thing existed, I have never heard of it nor had my friend whose daughter had the party. If we hadn't let Bug make her own choice about attending the bowling part of the party she would have missed a lot of fun, we wouldn't have learned about this tool, and we wouldn't have opened this new door!
My point is this. We cannot stop living because of Ehlers-Danlos Syndrome. We shouldn't stop our children from living either. Nor should we dump our own personal issues and hang-ups on to them. Just because I wouldn't be comfortable at a party where I couldn't do the main activity doesn't mean my daughter wouldn't love it. :) Sometimes it's hard to step back and allow her to make those choices, knowing she just as easily could have gone and come home feeling sad. But, if you don't allow the choice, you never know what the outcome would have been. You also don't know what you might learn.
Once again it was someone who wasn't a Dr, wasn't a teacher, wasn't anything but a friend who taught us a unique way to do an activity that normally one with Ehlers-Danlos Syndrome shouldn't be doing. There have been so many people like this who have touched and enriched my daughter's life, and I'm sure there will be many more. If you take the time to look around you, I suspect you will find people like this in your life too!
If you are interested in what Bug used to bowl, it is called a bowling ball ramp and looks similar to the picture on the right. The picture is from Access to Recreation and you can purchase this at their website by clicking here.
Obviously you will want to lift the ball for your child, as it does still need to get onto the ramp. :) But they can still feel like they are doing the bowling and aiming the ball themselves, which is awesome!
Yet another year has just flown by! Bug is finished with second grade in a week and a half. I just can't believe that, it seems like she just started school.
Of course we are busy with end of the year stuff. I have meetings with the AEA's PT next Tuesday after school, and the OT Wednesday morning. We are supposed to talk about where Bug is at with her exercises, what we should be working on over the summer, and if she should have any extended year services. While it sounds easy, these meetings usually take awhile, and I walk away exhausted! :)
One really cool thing is our pal Jim from iCater at the University of Iowa is going to drive down next week and meet with the OT, bug and I. He is going to see if he can help our OT with technology solutions, and I am just thrilled! I am hoping that this will open the door for future communication between them (he is a wonderful resource) that will help not only Bug but other children in our district. Jim has gone above and beyond to help us try to find something for Bug to help her, and this is just another example. It just goes to show that thinking outside of the box, being resourceful, and being appreciative can go a long way!
Bug has been playing in the challenger baseball league, it is her second year. The challenger league is for children who are unable to play regular ball due to physical or mental challenges. My daughter just *loves* playing with these children and looks forward to her games. Everything is done as safely as possible. Soft balls, adult toss, heart guards (optional)... Plus each child gets to play to their ability, so many walk, or have other people help them with batting. It's such a great program, and I am thankful that Bug is able to play a sport she normally couldn't!
We are also hoping to get to go horseback riding again this summer, I have to call on that today. If anyone is interested the technical term is Hippo therapy, where horses are used to do physical therapy with kids. It's awesome, usually free or very low cost. We look forward to it each summer. :)
Finally, I did a newspaper interview the other day with our local paper on Bug and EDS. I'm hoping something comes out before the end of the month (after all, it is national Ehlers-Danlos Awareness Month). I'll post here when I know more, but I'm crossing my fingers!
I as usual have updating to do in this blog, but for now, all I want to do is share what the Mother's Day card my daughter made me in school said.
The outside read:
Mom I love you!
And here's why! (now is where she gets to write on her own)
I love you cause you help me when I struggle and you also help me get better when I am sick. and usually you let do what I want to do you are very nice to me and my brother. you let us eat out. you let us play a game together as a family.
I just loved this card so much and had to share!
Monday, May 12, 2008 | | 1 Comments
You may or may not know this, but May is National Ehlers-Danlos Awareness Month. This year I decided that it would be a great idea to support Bug by joining in the Arthritis Walk. I looked at the groups in Iowa and found that there was one walking on May 3rd, and so I decided that I was going to do it!
I talked to "Bug" and she is going to walk with me. I also have a good friend who said she would join us. At that point I thought "hey - I should form a team"! So I did - and we're inviting parents and children.
I am hopeful that we will get a nice group together, but since the walk is about 2 hours away I'm not sure. I'm going to cross my fingers though, and I've decided to hit the pavement hard to seek out donations. I am hoping that this is where living in a small town will really help, I don't think anyone else will be doing this walk. Plus, we know a ton of people and I'm hoping they will be willing to make a small donation in honor of Bug. I guess we'll see!
If you are interested in making a donation to the National Arthritis Foundation in honor of Bug and our walk, you may do so by clicking here. I know a lot of people who read this are struggling already and I don't want you to feel you have to donate. I just thought it would be silly to not at least link here in case someone can and wants to donate.
In case you are wondering why we are walking for Arthritis, it's because EDS actually is considered an arthritic condition. While I'd love to walk for EDNF and have all of the funds go directly to Ehlers-Danlos Syndrome, EDNF just isn't at that point yet. Walking with the Arthritis Foundation will support EDS as well as other Arthritic Conditions, and it will allow Bug to feel empowered as well as allow her to meet even more "kids like her". (that's what she always says) I am hoping to make shirts for our team to wear, but it will depend on how many people walk with us. (more people = more money for shirts) Bug and I will wear them, and they will mention EDS. I am hoping someone will take notice and we can attract some interest in Ehlers-Danlos while there.
Thanks for reading - and you might consider looking and seeing if there is a walk happening sometime soon in your own area. :)
Friday, April 04, 2008 | | 3 Comments
I think I posted a bit ago about the custom bracelets my friend made Bug to hold her silver thumb splint in place. If not, what she did was add a clasp to both ends of the silver bracelet that came with the splint so it could be removed. Then she made new bracelets and added bead charms in Bugs favorite colors to them to "dress" it up. We have several other ideas like one that would be able to support charms as well. But we're still playing around. :) The idea is that Bug can change the bracelets to fit her mood just like any other piece of jewelry. Pretty cool, isn't it? Thanks Dania! You can check out her custom jewelry here: Designs By Dania.
As you might have noticed, I'm posting twice today - woohoo! We're on vacation and I'm trying to get my blog updated. I've added a ton of resource, support, and blog links. I hope you guys find them helpful! :)
I just wanted to take a minute and thank all of you who continue to post ideas, suggestion, and feedback in this blog. There have been so many good ideas that have come along, and I really do read and try a lot. Someone just posted a comment to an old post about Bugs mouth rash and how maybe it's from the container that she was drinking out of. What a great suggestion! That was too far back to remember what cup she was using, but I sure am going to pay attention from now on.
I also got tips about seating at school from comments in this blog. I used those to help convince our school to get Bug a better chair, and they did. This year she's had far less problems, and while I can't say it's 100% the chair, I do believe that has a lot to do with it. Extra arm, leg, and back support has to be helping.
Another thing that never fails to brighten my day are the comments from other "kids" with EDS. Granted, most of you are tweens or teens, or young adults, but to me you're still kids. LOL Anyway, it motivates me to keep trying and encourages me that I am doing the right things when I hear from you. It is also inspiring that so many of you are taking charge of your own health and well-being at ages that are far younger than the average person would. Kudos to you!
I've also had comments left from teachers and people working with EDS'ers. It's great to know that people are taking the time to try to understand what life can be like for an EDS kid. I wish there were more of you. If you ever have a question about something specific just let me know and I'll try my best to answer or give ideas. I am always behind in this blog, but if I see someone who needs help I'll try my best to get to it.
Finally, there was a PT student who wrote. Here I am guilty of not answering yet. I suppose part of the problem is that there isn't a specific exercise that Bug has taken to. We did a series of them that our PT gave us, but really it boils down to her loving the stuff that felt like play. She loves her mini-tramp and plays/jumps on it a lot. I made sure to get her one with a support bar to use as needed. She also loves the Bosu ball and jumping on and off of this. I also have found her sitting on it often which inspired me to research Balance Ball Chairs. I think I'm going to order a couple for our basement. If it feels that good to sit on a bosu ball I bet these chairs will be a hit too. I think I've mentioned before that she was playing the Wii while standing on the Bosu ball, but I can't remember. Anyway, while that looks like all fun and games I can tell you it isn't. Standing still on the Bosu ball is hard already, but doing that and playing Wii Bowling or Tennis is very challenging! LOL
She also loved the medicine balls that bounce. The thing she disliked most was the therapy band. Since then I've read that they aren't always the best thing to use with EDS patients. Some people can though, so ymmv.
Finally, there are so many parents and random people who post here and each and every one of you keeps me going. Thank you all!!!!
I'm tired of blogging and complaining, but gosh, I am so tired of people not understanding. Now, in their defense, Ehlers-Danlos Syndrome is not the easiest thing to understand. But why when information is available, or when I've even given it do they still not believe??? Or understand? Or question what the experts say?
Yesterday Bug came home from school around 1:30. I got the call around 1 that she had been complaining all morning about her stomach and head hurting. She spent most of the morning in her bean bag chair. However, at lunch recess the teacher saw her running around playing like nothing was wrong. When recess was over, she came inside and started complaining again and was sent to the office to get her temp taken and rest.
Her temp was normal, and they had her rest for about 20 minutes and then called me not knowing what to do. I said keep her another 15, and I'll call back. So I waited 15 minutes and then went to the school to check-in. Bug was still in the office, laying on the cot. She was not on the camping pad the OT left for her at the beginning of the year, nor did she have her pillow which I had left for her at the same time. The agreement at the beginning of the year was that she could use these things when she didn't feel well because we had a theory that it wasn't just rest that helped, but rest in a comfortable spot. In their defense, the office lady was at lunch and the person in there likely didn't know, and with a tummy ache I doubt they would have thought comfortable rest would have helped anyway....
So, I talked to Bug and it was the classic "all over" tummy ache we always get, so I just took her home. She spent the next 3 hours resting on the couch, snacking some (something she often does when her tummy hurts) and not even talking. As more time went by, she started perking up some and by bedtime she was "normal again."
In the meantime her GI had called me regarding the e-mail follow-up I had sent a week ago. He told me he wants us to try dairy-free for 3-5 days and see if that stops some of this. I went through her symptoms again with him (the fact that this goes in spurts, and once it starts we have a rough week or two and then we're good again, and that it isn't all day, but part of the day, etc). He said once again that is normal with the GERD. We're going dairy-free to see if it changes anything just in case she has some IBS going on too. We don't think so, but at this point it doesn't hurt to try. (another reason I love him - he's not just pushing surgery, he's trying any and everything with us!) If that doesn't work we're upping her fiber for a week to see if that works. Then we check-in again with him to see if he has any new ideas before our visit in April.
Anyway... Today I stopped in Bug's room to tell her teacher no milk, and she mentions yesterday and how maybe it was anxiety or something. She just couldn't understand why Bug would go and play at recess when she was so ill. I didn't know what to say, except 1) she's a kid, and she doesn't get to play much 2) the pain comes and goes and 3) if it is being made worse by milk, she had just eaten milk right before school and then again at lunch. Which means it could have been flaring up because of that. Regardless, I just felt like she didn't much believe it was "real" - even mentioning that another girl was doing something similar that day. Well - I LOVE her teacher - she is the best! But it is real - we dealt with this last year at school a lot, we deal with it at home, and the tests from the Dr's show it. (the GERD) Why do people assume that because she doesn't complain and you can't see it she isn't ill????????? We all work so hard to make her feel "normal", and to teach her to be in charge of her own body and we encourage her to meet her own needs. Why is the immediate assumption that she is faking not feeling well - or that on a daily basis I am the one making up these problems because she isn't talking about them 24/7???
Should I be teaching her to complain non-stop and feel sorry for herself? I think not! But it seems that in order for everyone to "get it" that's what needs to happen. Of course, if she complained all of the time then she'd be the girl who cried wolf. No matter what, she gets the short end of the stick. Ugh.
I want her to feel good about her self and not harp on her body not feeling well. The fact of the matter is for her she often won't feel "normal". I don't want her to focus on that. I want her to focus on living and being a kid as much as possible. Not on her aches and pains. Yes, I need to know about them, but I like how we've got it worked out where she lets me know in a matter-of-fact way and the end of the night. We don't have long talks about it (unless something new crops up, or it is unusual or bad pain) it's just something she lets me know about. No different than a homework assignment or what she played at recess. The problem is that doing it that way does not allow the people in her daily life to hear her express these things from her, they only hear it from me. And for some reason, I'm not believable. I guess that makes the Dr's unbelievable as well, since the tests and notes backing it all up come from them.
Why people seem to think that I could go to all of the trouble to find these Dr's who are good enough to work at the University of Iowa but are dumb enough to be manipulated by a Mom who for some crazy reason wants to waste hours of time and worry on a kid people don't believe it sick gets to me. I would give almost anything to not have to do this. Do they have any idea what it is like to always be looking for the missing link between these problems we have? To have to have the stress of all of the medical appointments, the driving, the missing school, the inability to work out of the home if I wanted because I have this other stuff going on... Why would I want to worry about what sports or activities are safe for my child to play if I didn't have to? Why would I want to forbid her from things that every other child gets to do? Or worry about if she can go to someone's house because the parent knows what is and isn't safe for her to do - or how to administer her medications on time. You couldn't PAY ME ENOUGH to create a crazy-ass life like this for my daughter or myself. Period. And I am sick and tired of people not getting it, not understanding, not making efforts to educate themselves to better understand and just ASSUMING I like to do this to us.
Yes, I am angry. I am angry that not only does my daughter have to be different but that we have to fight for people to believe her. She hasn't done a damn thing to deserve that. She is sweet, kind, honest, and a heck of a trooper. If she says she feels like crap at school someone better believe her - because she feels like crap most days and doesn't say anything because that's the way her life is. That's bad enough - it just kills me that then people choose to not believe her when she actually does say something.
I love our school. I love her teachers. I love my friends, and our AEA. What I hate is that Ehlers-Danlos Syndrome is not only invisible, but it brings on even more invisible symptoms that people can't see. And our society in general doesn't believe what they can't see. Who cares what the medical Dr's say, or what the Mom says. If we can't see it, we don't believe it. Since when is that how we live our lives???????????????????
In some ways I am lucky- at least I'm not being accused of child abuse. Here's an article that was just written a few days ago about an Ehlers-Danlos Mom who had that happen. It's long, but worth the read.
Maternal Care- Or Harm?
Ok, I'm done complaining, at least for now. I know I've brought this all up before, but I had to do it again. It's not one person I'm upset with, it's society as a whole. I believe my daughter is loved and cared about at school even if they don't get it. I might not have that somewhere else. For that, I am thankful. I just wish I could make people more aware of EDS and how horrible it can be, and that we are not crazy!!!!!!!!!!!!!!
Haha - I know, "Wiiiiii" sounds like a silly title for a post! However, that's what this is about (in part). The Wii.
I don't think I've taken the time to tell you guys about how much we love our Wii. Besides the fact that it is so much better than any other game system just because it makes kids move - it has opened up so many doors for Bug that were not open to her before.
For example, tonight we spent family time bowling. Obviously, bowling probably isn't something that a child with EDS should be doing. After all, if you aren't supposed to carry books around school, odds are the Dr.'s would frown upon hurling an 8 lb bowling ball around. But with the Wii, we can bowl safely in our own living room. I cannot explain how happy this made Bug the first time she did it. And she still loves it, months later.
On the Wii she is also able to box, play tennis and baseball. There are lots of other fun games she plays on it too (laser hockey, fishing, ping pong, etc) but the first ones are things that are not safe in real life. It is priceless to her to have a way to play them - and be able to play them on a level playing field no less.
This afternoon I was doing some work and watching her play "fishing". All of a sudden I noticed she was standing on her Bosi Ball. I could not believe it!!! If you have ever tried to stand on one you'll know it isn't easy to keep your balance on it while just standing still, let alone while throwing a fishing rod! LOL She also played several other interactive sports games standing on it. WOW! This is a girl who two years ago didn't have enough balance to walk up or down stairs with one foot, then the other. I cannot wait to tell her PT about this - I am sure she will be so proud!
So - if you do not have a Wii, and have EDS and feel left out of sports, consider getting one. It is one of the best investments that we have made!!!!!!!
I really don't feel like I have much to say right now, but I wanted to say we are still out here! :) I have been trying to get caught-up on some of the comments you guys have been leaving, if I haven't responded yet I will try to in the next day or so.
Bug is doing well, she's been struggling with her tummy a lot lately. I have an e-mail out to the GI about what we try next, if anything. I think we're pretty close to the end of the road here, although I hate what I have read about the Nissen Fundoplication surgery it might be our only option. I hope not, especially with not knowing how the Ehlers-Danlos would play into how long it lasts and any complications that could develop. More on all of that later, I don't want to go to bed depressed! LOL
A friend of mine designs jewelry, and she took Bug's thumb splints and modified them for her this week. They are just AWESOME! She put another clasp on the chain (so it has claps on both ends) so we can take the chain completely off. Then she made new chains (also double clasped) that are thinner but doubled so it's kind of fun! (like wearing two necklace chains together). By one of the clasps on each thumb she put a little dangle with pink and purple beads. Bug just LOVED them, and told me that she wants to keep them on and not the other silver chains. LOL I plan to take pictures in the next day or two to post - you will see why she adores them so!!!
School is going well minus the fact that she hasn't been sleeping as well as normal. I think a lot of that is due to our school being canceled and having late starts over and over again. It has messed her body's schedule up big time. I guess when you live in an area where a lot of country kids are bussed pretty much anytime there is sleet, snow, or fog school will be canceled, dismissed early, or starting late. If you're really lucky (I am being sarcastic here) you might get a late start AND early dismissal. LOL While it isn't the end of the world, and I'm sure they have their reasons, it is really hard for kids who need scheduled sleep to keep adjusting like this. Not to mention how learning time is effected. Luckily I have kids who pick things up easily - but I know there are many who don't and this has got to make things even more challenging.
Ok - I have to get to bed. Hopefully I'll get those pictures up in the next 48 hours! :)
Ok - warning, this is mostly for my medical notes, but as usual, you never know when it might be useful to someone else! :) Plus, I am finding going back in my own blog to be very helpful in tracking how Bug's symptoms have played out over the last 1.5 years.
First off, Bug missed her stomach medication on the 6th. She had it again on the 7th, and has been on it normally since. Starting on the 6th she started having sleeping problems because of her tummy hurting. I figured it was reflux, but wasn't sure if it might be stress due to her upcoming GI appointment.
The stomach problems have not stopped since, although I personally noticed that she was falling asleep more easily again around the 14th. Her sleeping patterns have not returned to normal, she is still taking a long time to get to sleep but that would make it around 11 vs the 2:00am that was happening the week before.
We saw our GI Tuesday and Bug did AWESOME! She had no anxiety during the appointment, which was such a relief to me. We didn't do anything invasive, but if you'll recall she wouldn't even get her weight taken in the fall. So this was a huge step forward for her. :)
Since seeing the GI, she is still complaining about her stomach hurting and is still having problems falling asleep. In the mornings she is telling me she hasn't been sleeping at night, even though I know she has. As this continues, I am left scratching my head as to why she is so off right now. Looking back at last years blog this was the really bad time for us too. What does that mean? I haven't figured it out yet.
Also worth noting is that last night she was laying down watching a movie in her brothers room and her hands broke out in a rash. Similar to what happens on her mouth and legs. She was not eating at the time, but had popcorn about an hour before. The rash was not located anywhere else on her body. It was painful but not itchy. I did take a picture but haven't uploaded it yet. By morning the rash was faded and not hurting like it had been the night before.
In addition, today we started her on Zantac right before bed. It was her first dose, but the GI said that it acts immediately. If that's the case I'm not too hopeful since she was still up at 11:00 with stomach problems. I'll give a full GI update in my next post, I just don't have the energy to do it tonight. But the gist of it is that if adding this doesn't work, surgery is her only option. Talk about stressful!!!!!!!!
Anyway, that's all I have in me for tonight. :) More later!
This is just a really quick post to share the picture I took of Bug's Silver Ring Splints (SIRIS) . Keep in mind she is just 7 - so these are tiny rings! :)
They are so beautiful though - and have been wonderful with all of her swelling finger issues. I just have to say again, if your child has hypermobile fingers, do not let anyone tell you that they won't wear splints! Bug has worn them since 5, and now at 7 is in silver instead of plastic. She knows and will tell you herself how much they help her!
As usual, it's been awhile since I've posted. We had a great Christmas spending it with Grandma and Papa. Both of the kids had fun, and we even kept up with Bugs PT and relaxation exercises. I was pleased with that. :)
Bug has really enjoyed working on her mini-tramp. I got one with a bar on it to make sure she has the extra stability or something to grab if she needs it. Several of her PT exercises are done on it, and she likes to just jump in general. It's great - I wish we had gotten one sooner! Her face just lights up when she's on it. Plus, I got a great deal from Amazon.com and paid only $59 and no tax or shipping. If only I could get a Bosu ball for a deal like that!
Grandma kindly sent her Bosu ball back with us for a few months since she currently isn't using it. It gives me a little more time before shelling out another $100 on PT equipment. We are also still looking for a 4 lb medicine ball that is gel filled and smaller than 8 inches. I thought it'd be easier to find than it has been, but part of that is because online a lot of places either don't say if the ball bounces (which is what we want) or what the diameter is. The PT told me I could e-mail him the ones I found and he can help me, so I think that's what I'm going to do if I don't have better luck.
Speaking of PT - Bug graduated Friday! No more PT unless something changes. Her hip has not been a problem since we've been seeing him, so our directions are to keep doing PT nightly and continue to work on her sleeping position to try to make sure we can keep her legs from being up in the air at night. I'm SO happy about this - because even though Bug likes PT, neither of us wants to drive to Iowa City anymore than we have to! This is one less appointment, yippee! So now we're done with OT, and PT for the moment, and I am SO THANKFUL!
We also did therapy Friday, and talked about our upcoming GI appointment on the 15th. This is the first "real" doctor appointment since her meltdown, and I'm nervous. We decided that what we are going to do is meet with our therapist 1/2 hour before the appointment, and the therapists will attend the appointment with us. I am contacting the GI ahead of time and requesting we not do any invasive procedures and let him know that we are planning to have Bug leave the room before we talk about what next, what if's, and so on. At this point we are just hoping to get her in the door and to cooperate with a basic appointment. If we can achieve that, we'll go from there.
The therapist is going to look into how we can have Bug removed from the room, if Child Life can be ready and well aware of her case. In the past Child Life has not been able to cope with her, they are used to children who are afraid because they don't know what is going to happen. Not kids who know darn well what's going on and do it often, and are afraid. They are also going to see about making sure we do not have a Child Life specialist that we've had in the past, both for Bug's sake as well as because I think they will be biased against her. That's what happened before, and after all of this therapy I don't need someone judging her on the past and making things worse.
After I hear back from the GI, I'll pass that along to the therapist(s) for them to plan based on what our appointment is going to be like. My biggest fear is that we're going to need another endoscopy - sometime soon. I'm sure she'll need one again, but I just hope it's not for awhile. However, even though I know the medicine is helping, she still is sleeping on a huge pile of pillows, requesting to snack a lot (because her tummy is starting to hurt, she says if she doesn't eat right away it starts to hurt bad) and can't eat a ton of foods. So with that in mind, I am worried. On the flip side of the coin, she's not missing school for feeling ill, and she isn't having any throw-up burps. That's all good. So I'm going to cross my fingers that maybe we'll be in the clear for a bit longer.
On a side note - the silver rings splints are working out nicely. A couple are too big to where on non-swollen days they will slip almost all the way down her fingers, but most days they are just loose around the joint where they belong. The days they are falling down we just don't wear them. The others are also a bit loose, but not nearly as bad. I still need to take a picture and update it here, they are truly beautiful!