To research : Reconstruction in Chronic Shoulder instability

Open Reconstruction of the Anterior Glenohumeral Capsulolabral Structures with Tendon Allograft in Chronic Shoulder instability article link, here. Coming back to read this, per suggestion of another woman who found a measure of success with this process. There has to be hope! Please comment other experiences that you've had that have been helpful.

A Mom Epihany : Why so resistant to home schooling my child wth Ehlers Danlos Syndrome?

I think I just figured out why we have been resistant to homeschooling. We have/had a vision of what our daughters life would be like and by pulling her out of school, it is announcing that her disability is debilitating. That she cannot just "get better" and that we have to plot a new course. These are not bad things, in and of themselves, but I think we have been holding hope that she would just be better one morning, and her shoulders would be fine. In a way, homeschooling has been a flag that we have lost that hope. I know that is not the way to look at it, and I understand. It was just a bit of an epiphany this morning.

I feel like it's the right course and I am ready. I have to talk to my husband more, and then my child, and then the school. We may ease into it. We may wait a bit longer. We'll see how it goes, but if my husband seems resistant, I can understand that it isn't homeschooling he is shying away from, but the idea that his eldest won't be able to do the things that she wants to do. That her world will be modified. Again, I know that modified is not bad and that she can have a full life. I am not saying otherwise, just saying that I feel like I understand something about myself and my husband that I may not have realized, previously...and I feel like that's a good thing to understand.

So far, our child has not been able to stay in school for a full day since last Easter, when her shoulder dislocations started occurring every day. She did much better at home over the summer, increasing strength through PT and experiencing 4 days at a time without dislocations. Now that school is wrapping up week four, she is back to frequent shoulder dislocations and increasing pain/severity.
A blessing in disguise of home school would be that it would make it much easier for her to continue physical therapy. While we do not want to take her out of her social opportunities, the laws in our state allow for her to attend some classes at school, which may help alleviate that concern.

I'm pretty sure that parenting is never as easy as we all suspect it could or would be, and with special health considerations, the road can be bumpy. What we're learning as we go along, is that as long as we hold each other up and keep traveling down that road (walking, wheeling, assisted, or other), that is the key. We won't give up.

The other day, my daughter was in a lot of pain and her spirits were as low as they could get. She expressed that she didn't believe in blessings because she didn't think a higher power could possibly be looking out for her.  Wow, that stopped me in my tracks. My poor girl, in such pain, and I couldn't fix it. I could support her, say I'm sorry, offer her comfort and love and help to get stronger, but I can't fix it. That is hard for her, and it's hard for me, too. I do think that God, if you believe in that sort of thing, gives us what we need and He must see something in our family that indicates a strength we don't understand. Maybe that's naive, and maybe I'll be joining my daughters disenchantment in a few years, but for now, I feel a blessing in realizing that modifying the path and plotting a new course may just bring about some wonderful opportunities. While it's sad to step away from the idea of what life looks like and turn toward another vision, I suspect that in doing so, we will all be rewarded with happiness, success, and joy in ways that would not otherwise be possible.

So, while we may have been looking at home schooling as a letting go of hope, I am seeing it in a new light today. Today I see it as a better chance, and if that isn't hopeful, I don't know what is.

Bilateral Custom Support Vest has arrived - Ehlers Danlos Syndrome posterior shoulder

Well, it's finally here! After many weeks of waiting, back and fourth measuring, and more weeks of waiting...Hooray! We worked with the fantastic people at Scheck and Siress (Angela and Arnold) to come up with this hopeful solution for the ongoing bilateral posterior dislocations that occur multiple times each day. The vest was designed so that my daughter can put it on and snug it up herself with straps at front of each arm and on each side of rib cage as well as a zipper front. It was designed with as much breathability as possible, though it is still somewhat hot, heavy, and constrictive. It needs to be somewhat snug and firm to be supportive, so it's a good mix.  The bottom photo shows two inserts that sit inside the vest (you cannot see them from outside). They are a firm plastic that help sit right behind the scapula, in hopes to prevent some dislocations. These have been custom molded to fit her back, to make them as comfortable as possible.  They are removable, as well, and the velcro can be taken off and put on the front if they were to be placed on the back of the vest for comfort, for any reason.  Obviously, if we did that, they would not provide as much help, but it's good to have versatility.

We have been to many doctors and this is or current "last hope". No one has a better idea for her, so we can pray that this really helps. Day 1 didn't go great, but getting used to a new brace will always take time to adjust to. Our hope is that this will help her with ongoing good posture and proprioceptive (spelling?)  input to aid in her muscles holding those lose joints together. I hope and pray that this will allow her to do more. It's too soon to tell, however, so I will have to come back and update you in a few months. Please let me know if you have any questions. I know the people at Scheck and Siress said they have made similar devices for one shoulder, but this is the first bilateral that this team has made.  They seemed to have thought of everything and they really did a fantastic job.
As far as bulk, it is very streamline for a product like this, but it does look a little "football player" mode on a young teen. My daughter opted to just wear it over a cotton shirt without trying to hide it under sweaters, and more power to her. She's one brave young woman.

School Days with Ehlers Danlos Syndrome - Got a 504?

One of the first steps in getting safe procedures in place at the schools is to work with the appropriate school team to ensure a 504 Health Plan is in place. You can bring any specialized documentation from your Doctor to the school for use in creating this plan.
If you don't have it already, print a copy of "An Educator's Guide: Meeting the Needs of the Ehlers Danlos Child" by the EDNF group, and take a copy to the school.
What is a 504 plan?
Taken from WrightsLaw, at this link, a 504 is defined as "...a civil rights law that prohibits discrimination against individuals with disabilities. Section 504 ensures that the child with a disability has equal access to an education. The child may receive accommodations and modifications."

Because the rules and legal process that the schools are required to follow can be very complicated to a parent who is unfamiliar with the terminology or the protocol, I recommend familiarizing yourself with Advocacy Guidelines here, and general basics of IDEA, 504 and IEP on Wrights Law, here. 

It is essential to have the legally binding documents that are relevant to your unique needs in order for the school to have access to the resources they may require to accommodate the individual situation. While there will be instances where an EDS child requires an IEP, most children will be directed the route of a 504 plan.  If disability and resulting accommodations are the only goal, the 504 plan is designed to assist. If there is an academic issue or other situation present that will require an IEP, the 504 can be worked into the IEP. 

While some schools will be very knowledgeable and accommodating of how to utilize a 504 plan for your Ehlers Danlos child, others will not have the knowledge and some schools have even given false information to parents. I suspect that this comes from lack of understanding of EDS and lack of understanding of the federal guidelines of 504 plan. Your child's teacher is not likely to be the person you need to talk to about this, so the first step is tracking down the person who represents and reviews cases. Talking with your school principal is a good place to start.

I have found that going into a school with all the specific recommendations, in writing, from the Doctor to be extremely useful. The school was unsure what to do without that information. For example, my daughter is medically excused from PE classes, unless adaptive PE can be provided for her (which, in our school, it cannot). Special accommodations can be implemented into the school classrooms or grounds, such as a wheel chair access ramp if needed. Have the OT/PT/Doctor write out what adaptive devices are needed, make copies, and take this to your school team so that they can understand what steps they will need to take. 

Exercise patience as it will take time for the school to get through their process of meetings to facilitate the plan. And keep in regular contact with your team lead and the school nurse to discuss what is working, and what isn't working. Be flexible with items that are not necessary, and be assertive with doctor advised modifications that are required. You are allowed legal council to attend meetings and help you, if you feel help is needed. We have had great success in working with our medical team and the school team, however, our daughter still gets injured by accident in school.  It is not a perfect system, but it is one we are currently all willing to work with. Under different circumstances, homeschooling may be a better option, but we are not there just yet.

Our school also provides time with an occupational therapist, though it is extremely limited.  I have not found that these sessions truly do anything to help my daughter. Instead, I look at the time with the OT as a good bridge between the school staff and the medical team. The OT / PT they assign at the school are in contact with our private OT/PT and they pass along the instructed guidance and modifications to try. They assess if those modifications are working, and they advise if changes are required.

Going to meetings for creation of these documents can be very stressful, which is why I stress the importance of educating yourself on the process, the terminology, and your legal rights as a parent. WrightsLaw is the best resource I have found for this information. If you have a better resource, please share.

We have a great school here, and I am fortunate to have so many people looking out for my daughter. Even still, the IEP/504 plan she has is absolute key to keep her safety a priority and to enable the school to modify resources as required. There are many specifics of this that I can go into, but I will save those topics for other postings.  Today, I just want to stress that the federal government program is available for your safety and use, and I encourage you to utilize it, if you fit the need for the program.

DonJoy Shoulder Cradle for night time

First, we laugh when we see this photo because it is not entirely a restful sleep when your arms stick straight up in the air.  That is a problem in and of itself, but the shoulders dislocating every day and night were a worse problem.  When the shoulder instability is at it's very worst, we add this Donjoy Shoulder Cradle to one arm at night time, and we use the Donjoy Ultra Sling (shown here) This combination has helped her out tremendously. We don't use the bolster underneath, and the other sling has straps going across the front, so it's all a bit ridiculous looking, but this combination helps her to stabilize long enough for that constant instability to tone up. It took weeks of doing this every night, and on very bad days, she will sometimes wear these during the day, but only for sitting. We find that this cradle doesn't suit her well for moving about (it does have velcro strap to help keep it on, but it's a bit heavy and adds to problems if she walks around with it. In addition to the immobilizers, when needed, we raised the head of the bed and used body pillows to create support where we can. This makes it very hard to toss and turn, which is a good thing. If you think these may be of help, talk to your medical team and see what they think. The Don Joy products have been our best brace/immobilizers to date.

Penagain Y shaped pen for writing

We tried every writing device and combination you could imagine for my daughter's hands and the hyper extension/low muscle tone. She didn't really take to anything well enough to correct the problems. Dr. Tinkle gave her a Y shaped Penagain to try out. This was a very clever option for her that would have been great, had we introduced it at a younger age.  The trouble was that she was old enough that it was very difficult to get used to. She did really well with working on switching her grip on her own around 6th grade, and that has worked fantastically. Before that, she was not ready. I think this Y shaped pen would have been a life saver during the elementary years and I would have loved to have known about it early on.
We also found that typing was easier for her, and especially on keyboard with soft, low profile keys. Her school has provided her a laptop to use for all classes, ever since her OT advised such. This option has been very good, and it also cuts down the number of items she would be required to carry with her from class to class.

Slant board - adjustable and collapsible

Early on, my daughter's occupational therapist recommended the use of a slant board to help support her wrists. We found this affordable solution that travels easily, as it is collapsible and durable. The one we have adjust with heavy duty velcro for different angles of writing. When collapsed, this is incredbily thin, though not entirely light weight. It can travel in a bag for school use, though we opted to keep binders as makeshift slant boards in each classroom. For home use, though, this is a nice option that can travel all over the house for the kid who loves to write and draw. Some schools will purchase items like this for the students to use, if the OT through the school system advises it, so it is worth looking into if your OT recommends a drafting desk or slant board to support the hands and wrists. We purchased ours online, here.
In addition to the slant board, her Genetic Doctor recommend Y shaped pens and other support options. I will add a listing soon.