I'd love to say that I haven't updated because things are going well, but that just isn't true. This has been a hard fall for Bug, and honestly for myself as well.
Bug has been struggling with migraines. We've been through several medications to treat the pain with little success. She is now on a daily preventative and (knock on wood) it seems to be helping.
She also is still in two ankle braces due to ankle instability. We had to stop physical therapy a few months ago because she ran out of visits, and insurance said "she does not show enough improvement" to allow her additional visits. I want to scream at them that how can you say that about a 9 year old, but I haven't... yet! Anyway, PT at home is not anything close to the same as PT at the Dr...
This week she started having problems with her right hip. Both times she insisted on going to school. I don't know that letting her was the right thing to do, but she has missed a full 15 days so far and hates missing any school. We have an IEP meeting coming up soon and I suppose this is something to address. She will be starting back to physical therapy right after Christmas. That was the soonest they could get her in for a new evaluation. At that point we'll find out how often to treat her, but what stinks is that our insurance reduced approved visits down to 20 this year (from 24 last year). Which unfortunately means we have to take that into account as to how to treat her, instead of doing what the Dr. says which is constant treatment. (she also still has posture issues, and ankle problems)
On top of that, we're not even through two full quarters of school. I am feeling guilt because she is missing so much and I also am missing a lot of work. (I work at a different school) I love my job, but I feel bad for the kids I work with because I've missed a lot, and I feel bad for Bug because there are times that I would have insisted that she stay home longer if I was more available. But I can't stop living for this, and neither can she. I just wish I knew if this was a rough patch or if we are going to continue along this way. With both the EDS and migraines they say she will likely get worse during puberty. Hopefully we can hold off on that as long as possible!
In addition, I spent two months in physical therapy after seeing the orthopedist (same one as Bug) for my own ankle and knee pain. As it turns out I have OA in both knees, Achilles tendinitis, a heel spur, five bone spurs in one knee, three bone spurs in the other knee, plus most of the cartilage gone in that knee. I knew I had a lot of pain, and a high pain tolerance, but it wasn't until taking 1000 mg of Tylenol a day plus two alieve and getting ultrasounds for pain that I realized how much pain and how much it was effecting me. WOW. I was told by the orthopedist to come see him again when I need him. I was also sent along to cardiology and genetics. Its been long suspected that I passed the EDS on to my daughter, and with the OA and severe spurring at 33 it's time to find out. I also have been having issues with going from kneeling or squatting to standing with getting really dizzy like I'm going to pass out. He wants me checked for POTS. So - I guess maybe I'll start getting some answers soon too.
So like I said, it's not a good thing I haven't written. At the same time, I felt that I owed some kind of update to let you all know Bug and I are still around, I just haven't felt like writing about it lately.
I hope you all have a wonderful holiday!
I knew it would, but I didn't know when. I also didn't know it would be so obvious, or how it is that I under-estimated Bug so much. We've spent so much time teaching her to advocate for herself, how on earth did it never cross my mind that she would tell me when the time was right?
Tonight, Bug asked me to have to school get her a laptop so she could either type or speak (Dragon Naturally Speaking) to a computer. I swear, I almost had to pick my jaw up off of the floor. I asked her why, and she told me that it was so much easier to do her work and more comfortable, faster too. I asked her if she wanted to talk to her teacher, or if I should, or if we should do it together. She said together, because while she agreed with me that she should talk with her about it because she can explain what she wants/needs and how she feels better than I can, she said that sometimes she feels shy about talking. For the second time in a five minute period I found myself totally impressed and floored by my daughter. Why? Because it is HUGE that she recognized that she can feel shy/uncomfortable talking about these things, and, even bigger, that she could explain to me that was how she was feeling. WOWOWOWOWOW!
So, I left a message for her teacher and hope to set something up quickly. I know how the "system" works, and I know it's unlikely we can get what we need fast. However, maybe we can get the process started, and, in the meantime set-up something temporary.
Huge news. Major maturity growth, and self-expression. I am just so pleased and happy with my girl.
More before long, genetics appointment next week, and hopefully a computer update!
I promised to do a Bug update, so here goes!
Bug has been having stomach pain since August 9th. It has been severe enough for her to invent a whole new level of pain on her scale. :( We tried everything. Ibuprofen, pepto, extra dose of generic prilosec, the IBS med that I wasn't going to try, and upping her Miralax. (just in case). NOTHING has worked. The pain never fully goes away, and gets worse as the day goes on. It has been very stressful for Bug and I. I have felt so bad for her but have been unable to get it under control.
To complicate matters her pedi had just left for vacation when we called about it. Instead of seeing someone new (I asked if anyone else knew about EDS, and they had no idea) I decided to wait until he got back. I still don't know if that was the right choice, but with Bug being complicated I just didn't trust seeing someone new in the middle of this. I figured we could always hit the ER if we went beyond horrible pain into, well, I don't know. I just knew that was an option if suddenly things got out of control.
So... the pedi still thinks it's abdominal migraines. He wants her to take 400 mg of ibuprofen 3 times a day all weekend, and then call Monday if things are not yet under control. At that point he will put her on a script for migraines, or, if her symptoms have changed he might ask to see her again.
He also checked her thumb, as she had popped it at Camp a couple of weeks ago and has been having pain up her arm (into her shoulder) ever since. He said that the thumb is in the correct position (it resolved itself not long after it had popped) and that the pain is likely from swelling that is still going on. Peace of mind for me after hearing that. This is the first time she's had lingering pain after her thumb has been out.
He also looked at her ankles again, and agreed with the PT that bracing the left ankle was also in order. So, Bug is getting another brace. She wasn't happy, but, when I presented it as "if you have the choice of wearing another brace and getting to be more active, or not wear it and sit out more which would you rather do" she immediately picked the brace. It's amazing what perspective does!
Today she also saw her OT and got her silver ring splints adjusted, as well as getting 3 replaced due to growth. We always enjoy going to Keith, he's just so nice!!!
We also paid a visit to our assestive tech friend Jim at ICATER. He sat Bug down and worked on Dragon Naturally Speaking 10 with her. She did GREAT! The program is recognizing her so much better these days, to the point where he even taught her how to use her voice for corrections. While that is not a big deal to us adults, it's a huge sign that her speech has changed and matured a lot! Woo-hoo! Great news, as sometime between 4th and 5th grade I predict she will need to move into Dragon at school for her longer assignments.
Finally, school starts next week. Bug is a 4th grader. I just don't know where time goes. My "little girl" has now had a birthday and is 9. She is looking and acting like a big kid. While that is really cool, I sometimes miss my little snuggle Bug. :) Anyway, I've been busy trying to make a first aid box for her that includes a corn heating/cold pack, an itch stick that doesn't burn her skin, vet tape and gauze for cuts as band aids are causing her skin damage, plus instructions on what all of her medical needs are and how to handle them. While most of that is in her IEP there are many updates and things I'd like to highlight for her new teacher.
I need to get to bed, that about sums it up for tonight!
Ok folks, I am straying from my normal talk about Bug, and yes, there is plenty to talk about. Tonight, I am hopping on just to say something about me. While Bug was getting her ring splints today at the U of Iowa I mentioned to Keith (the OT we've seen 4 years now) that I didn't know what a "normal" range of motion was for a finger. He looked at me, and I said, "My fingers have always hurt when I write, and I just wondered if they are within the normal range of motion at the tips". (They bend straight back at the bases - so I know that isn't normal! HA!)
Anyway, he looked at them and made some comment along the lines of "Good God yes they are hypermobile" and asked if I'd like him to make me a plastic splint to try. So how could I say no? I did, and people, it rocks!
I cannot explain to the "normal" people out there how different it feels to have stability in that joint. Weird just isn't a good way to do it. Strange but amazing is more like it! It's been almost 12 hours since I got my splint and I just love love love it! I am already now considering seeing about getting my own genetics appointment made to take the leap and get my own official diagnosis (they already were pretty darn sure I am the carrier, which means I also have EDS) just so I can get my own splints on any fingers that need it. I don't care what they look like, I don't care what they cost. It feels too good to have that extra strength to worry about those things.
The true test will be next week when I start working at school again, as I do lots of writing. But today I wrote a letter and could tell a difference, and I was surprised at the difference I felt typing. Wow!
I had such an "ah ha" moment right after getting the splint. Keith wanted me to try it out by writing something. I reached over to get the paper and he said "Stop that! You can pick that up like normal now. Use your first finger and thumb". I looked down, and sure enough I was scooping the paper with my whole hand. I laughed, and corrected myself. I have never noticed that before - and I am sure there are plenty of other things I do oddly too. Just like every other EDS'er.
Before I take the leap, I need to make sure that if I ever need to get back on my husbands insurance I still will be able to. I moved onto my own policy last year with the school. While I don't plan on leaving the school, it's just better to be safe than sorry.
Thank you for listening to something totally non-Bug related. I'll be back to do my normal Bug updates tomorrow! :)
One of Bugs EDS friends (in fact, her only EDS friend) is in a contest for a local auto dealership. She sang and is in the top 5. Now, she needs votes to stay in and hopefully win!
As we all know, EDS keeps kids from doing so many fun activities and sports. Singing is one of the "safe" activities we can do. So lets all band together and vote for Samantha Hale, she sang wonderfully and it would be great to see someone win who continues to overcome so much!
The website doesn't require you to register to vote, and it also doesn't say how often you can vote, only that the vote goes for 4 weeks with one child being eliminated each week.
So - take a minute and vote for Samantha, gooooo Sammy!
Thursday, August 13, 2009 | | 3 Comments