No News is NOT necessarily Good News.

The old adage "No news is good news", doesn't always apply.  In the case of this blog, no news just means I am feeling too defeated to type the same thing over and over again.  

Our much anticipated and long awaited trip to the Endocrinologist was a bust.  After doing yet another hour long medical history and ANOTHER full physical, all the same questions and answers, all the same physical checks (down to 49lbs! crap!), tests and responses, we got the same answer as always...."We have no idea".  or "There is definitely something going on with her, but it isn't something that falls within our specialty."  or in this case, "There is absolutely no hormone in the human body that can cause the types of issues that Leah experiences."  

As a bonus, they agreed to do some blood work, to repeat it every 6 months and to continue following her for the next couple of years to see if anything develops -  but basically they threw up their hands and shrugged.

Based on bloodwork and medical history they ruled out Ehlers-Danlos Syndrome, Parathyroid disease and Fibromuscular Dysplasia - I had added these three to my list due to recommendations and research.

For Leah it is the same old thing - usually misses at least 2 days a week of school, the cooperation at the school is still less than desired but we are at lease getting the bare basics of what we requested.

We are struggling so hard to find a balance for Leah.  If she does "too much" at night, she doesn't have the reserves to make it to school the next day.  Currently, too much amounts to a 30min swimming lesson and 20-30 minutes in Games Galore (running, playing games in the YMCA gym) on Monday nights - it doesn't even push her bed time back, but it is too much.  I don't think she has made it to school on a Tuesday since Christmas!  If she plays outside "too much" after school, she doesn't make it through supper and may or may not make it to school the next morning.  She already misses her outside playtime during lunch at school while she is taking a nap, and soon will be kept inside the school on the hot/humid days.  She had to give up gymnastics, she only goes to the house of her best friend to play, no other play dates, she has to stay within sight of the house or with an older sibling at all times.  We are already (hotly) debating letting her go on the family vacation to the cottage this year - my instincts say no, but my heart says yes.  

When does she get to just be a kid and have fun?

Following along on that thought, I came across an excellent story written by a lady with Lupus - it is about how she finally stumbled upon a way to describe what having a chronic illness is like.  It is called "The Spoon Theory"

                                                                

It has spread like wildfire among the disease/syndrome forums.  I am in complete agreement with her explanation as it exactly illustrates what Leah goes through.  As such I have added this photo of Leah.  She is now an official "Spoonie"!

Please keep Leah in your thoughts and prayers as we await a decision from the Mayo Clinic.  A month or so ago, I stumbled upon a chain of links while doing research that led to a Mayo Clinic Self Referral form.  Feeling a little foolish and a whole lot nervous, I filled it out and sent it off.  I sent along the introductory letter I have created and keep up to date with all of Leah's symptoms and medical history to give to each of her doctors.  A couple days later they requested copies of Leah's medical records, scans, MRIs, doctor's letters, THE WORKS!  I organized all that info and sent it off.  A couple days ago I was notified it is being reviewed by a doctor and they will decide if they want to see her.  They have an entire department set aside to deal with "International Patients" and really make an effort to keep us informed of where we are in the process.  My understanding at this point, is that if they feel Leah could benefit from their expertise or that THEY could benefit from diagnosing, researching and treating Leah, than we would go to Minnesota to be seen by some of the best medical minds in the world!  Since she seems to have stumped the ones in Ontario, lets move onto the ones in Minnesota!  

Small wins

Man!  Does this ever sound familiar!


http://www.myfoxdetroit.com/dpp/news/deena_centofanti/yes-kids-can-get-multiple-sclerosis-20110317-wpms


If you listen to the interview, this family went through so much to finally get a diagnosis for their daughter.  I have seen their story on other websites and it has always struck a chord with me.  Why does it have to be so difficult?


On the diagnosis front we haven't made any progress.  In fact we are stalled until the Endocrinologist appointment in May and then to the Neurologist again in July.  ARGHHHH - that is so far away!


On the school front - well currently we are holding our own.  We had our meeting and it was agreed that the school would begin to send work home for her when she is away - why that was such a big hairy deal I have no idea, it used to be done automatically.


The educational resource teacher administered the Kaufman Test of Educational Achievement (KTEA)

The KTEA provides a individually administered measure of educational achievement for those aged 4 years 6 months – 25 years (comprehensive form) and 4 years 6 months – 90+ (brief form). The test can be used to identify an individual’s strengths and weaknesses in three key domains: maths, written language and oral language. It can also be used as part of a comprehensive psychological, psychoeducational or neuropsychological test battery which can enhance understanding of the individuals total functioning.  

She performed exceptionally well (90-97th percentile) in everything except written language in which she was average.  In their eyes, this meant that she was not having any trouble keeping up with her classmates and that she was handling all the absences very well.  According to her teacher (who has greatly changed her tune since the parent teacher meeting we had) "she is so smart!  I tell her what she has missed, review it quickly and over one recess she is all caught up!"  We reminded them of our concern regarding her foundational studies and they brushed us off.  I maintain that the main benefit of this test will be in using it as a benchmark and next year I will request that it is done again to see if she gets the same results.

Another win for us was finally getting them to agree to a rest period for Leah during her lunch time.  This was a hard fought battle for us, that ultimately required a doctor's note and a great deal of stubbornness on my part.  Ultimately what matters is she now has a place to lay down and take a rest while the rest of the school is out playing.  Then when they all come in, she rejoins her class and they all eat lunch.  We set her up with an amazing little folding cot, her prayer quilt, a little pillow and a tiny little sleep mask!  It all folds up, wraps with a bungee cord and pops into a locker in under a minute.  We practised at home.  In case anyone is wondering, the cot is a complete and total thing of beauty!  So easy to use, lightweight but sturdy, folds up small and totally portable, comes soft sided carrying case with a shoulder strap - just like the lawn chairs.  Can be found at your local WalMart for $24.99 and comes in pink.  There is also a version that comes with a little attached sleeping bag but I think you have to specially order that one. 

Leah says she is sleeping during this rest period and she hasn't come home yet so <fingers crossed> it is working!

What we didn't get was and sort of educational help from an EA or an IEP.  The EA issue we will re-address next year after another assessment is done.  The IEP - I haven't given up that battle yet!

Leah came home today, a little quieter than normal, seemed a little sad.  When I sat down and talked with her, she said it was because she hadn't done very well on a math quiz.  She brought it to me - she had gotten 5/12 and 3/15 on double digit subtraction - a new skill this year.  We talked about it, I kept it low key, I wasn't upset with her and decided that she should rewrite the questions that she got wrong and do them again for practice.  A little while later I went in her room to check on how she was making out....I found her sitting at her desk sobbing.  My heart just shattered!  She was sobbing because she had no idea how to do the questions.  We settled down in the kitchen with Bethany and between us, a pile of pennies and lots of fingers, we walked her through it.  It definitely took longer 15 mins (length of recess) for her to understand it and I was livid by the end of it.  THIS is exactly what I have been trying to avoid for her.  This is the type of problem I have been warning the school of.  Why is it so hard for them to understand and when did they stop caring?

Pettiness

Things are not going well with the school.  On Monday I dropped the letters off in the office and then went over to the School Board to drop off the letter there and try to pick up some hard copies of the info I found on the website.  


No sure why it was such an ordeal but in the end, instead of having pamphlets I ended up meeting with the Coordinator of Special Education - the person I was dropping a letter off for.  We met for about 1 hour, I outlined my concerns about Leah's situation and how the school had responded.  


He gave me the usual song and dance about budgets, resources etc. "In order to free up EA time for Leah, we would have to take that time away from some other child".  I didn't appreciate being made to feel guilty for requesting help for my child so I reminded him that in order for that child to have gotten that time, it was probably taken from another child."


By the end of the meeting we had concluded that developing an accommodation IEP for Leah, and arranging some sort of resting area for her to use daily at lunch were not unreasonable requests and there should be no problem in getting those things set up.  As for dedicated EA time, I would have to meet with the principal, ERT and teacher to discuss it.  He volunteered to attend the meeting if I felt it was necessary.


My job prior to the next meeting was to get one/some/all of her doctors to write letters outlining her condition, restrictions, needs and prognosis.  Not that the letters would guarantee anything, but having documentation from them would strengthen my case.  I also needed to get the Sleep Specialist to finally sign the documentation that allows the school to give her the medication at lunch. 


He advised me that he would be calling the principal to let her know we had met and to give her the highlights of our conversation - something he would have done if he had only received my letter anyway.


Well first thing Tuesday morning I get a call from the secretary on behalf of the principal - they would no longer be able to give Leah her medicine until all necessary paperwork was completed.  I had expected some kind of foolishness from the school - but really, won't give her the medicine?  The medicine that is supposedly keeping her in school more often?  If you want to strike out at me fine, but you are mad at me, not my daughter.  


Anyway, in other news, the Sleep Specialist has decided there is nothing more he can do for Leah so he has discharged her back to Dr. Bonsu and Dr. Callen.  So now I have to hound them for the necessary paperwork and appointments.


Everyone in the family has been sick with this horrible respiratory bug that is going around, I have had to bump Leah from her paediatrician's appointment twice now so he could see one of the other kids.  This Friday, we go to see him again, and hopefully can accomplish everything on my list.

Fighting the Powers that Be

As I mentioned in the last post, I am becoming increasingly distressed by Leah's absences from school.  I have spoken with the school numerous times - the last two times, directly requesting help from the Educational Assistants, to have her assessed for an IEP, to have space made available for her to nap so she can stay in school more often, that work be sent home so I can assist in keeping her current etc.

Unfortunately, the response has not been good and I have been forced to move on to the next step.  Today I drafted a letter to send to the principal reiterating all my requests, my reasons for them and quoting supporting information from the school board's website.  I have cc'ed Leah's teacher, the Educational Resource Teacher and the Coordinator of Special Education at the School Board.  If nothing comes of this, then I will lodge a formal complaint with the school board.

I am greatly disheartened that it has come to this.  I can't believe that the school would not be more proactive in seeking/providing assistance for her.

I have included the body of the letter below.

Further to our conversations on February 15^th and 22^nd, I would like to re-iterate my request for a Team Meeting to discuss the educational and support needs for Leah.  I understand that the lack of an official diagnosis may make this a more difficult process, but the facts speak for themselves, she is missing an astonishing amount of school, and while at school it is noticeable that some days she is lacking the ability to work to her usual level.

As mentioned in her report card, Leah is constantly struggling to catch up on school work missed due to her frequent absences.  I understand that Mrs. ****** is working with her as time allows to bring her up to speed, but I cannot imagine that she has sufficient time to meet all of Leah’s needs. 

As of the date of the printing of Leah’s report card, she had missed 29.5 days of school.   As we discussed, this figure does not include the many, many days that she has come home after an episode.  She is normally a good student who is eager to learn, but with this amount of missed instruction, it is a terrible strain on both teacher and student to attempt to remain up to date.  As stated on the website;

Belief 6:

The classroom teacher needs the support of the larger community to create a learning environment that supports students with special education needs.

From our conversations, I understand that any work sent home cannot be assessed for marks, but currently I am not receiving any type of work/practice for her to do.  I am willing to help her at home, but am not being given the opportunity to do so.  I have asked that any practice or work that needs to be sent home could be given to one of her three siblings at the school.

In doing some reading on the NCDSB website, I am given to understand that Educational Assistants are assigned to the school not a particular student, and I would like to again request that some time be dedicated to Leah to help with her school work and her trips to the bathroom/office/etc.  Based on the Emergency Protocol established at the beginning of the year, the school requested that Leah not be allowed to be alone when outside of the classroom.  Since then she has used other students to ensure her safety, I would prefer that safety issues be attended to by an adult.

I had also requested giving Leah an opportunity to lie down during the day, possibly at lunch.  We have noticed that a brief nap or chance to rest seems to be very beneficial to her and might give her the opportunity to remain at school more often.  I understand that dedicating a staff member to her for this time would be difficult, but again, that is where an EA would be an asset to her.  As for a lack of space, even a quiet corner in the library would be sufficient if a more suitable space was not available, or until one is made available.

While I understand best practices for a teacher would be to modify the teaching program as a student requires it, and I appreciate the offer of an IEP prior to the EQAO testing next year, to ensure she receives some sort of accommodation if required;  I strongly urge that an actual IEP be in place for Leah now. This would allow the IEP to follow her from teacher to teacher for continuity.  Leah’s needs are unique and a new teacher would need to have an understanding of what has worked in the past and what those needs are.  I am requesting the assignment of an IEP at the earliest possible opportunity to ensure she receives the necessary accommodation.   I strongly believe she needs one now.  Again, quoting the Guiding Principles:

·         The guiding principles for services to students are rooted in the belief that the Special Education Department advocates for all students.

·         Students and their successes are the focus of all decision making.

·         The foundation of programming and delivery is early ongoing assessment and intervention.

I am distraught at the idea of Leah falling so far behind that her marks and foundational studies are negatively affected.   This will hinder her chances for success as she progresses through her schooling.  This is something I am not prepared to allow.

As always, I can be contacted by phone or will make myself available for any meetings that would assist us in accessing the help that Leah needs.

Thank you,

Heaven only knows how this will turn out.  Keep us in your prayers.

XOXOX

Feeling......?

I can not put into words how I am feeling today.  Yesterday Leah had her appointment with the Neuromuscular Specialist and unfortunately, we are really no further ahead.

He and his resident both feel there is something wrong but it does not fit within their area of expertise.  He feels we will be better served by seeing the Neurologist.

The word disappointed comes to mind, but I can't be disappointed to have degenerative muscle diseases crossed off the list.  I should be happy about that.

Defeated also is on the tip of my tongue, but again, it is progress of a sort.  Ruling out syndromes, diseases and illnesses will eventually lead us to the answer.  I guess it is the EVENTUALLY part that is causing the angst.

I knew going into the appointment that nothing happens quickly.  I knew that we weren't going to walk out of there with a definitive answer.  I also knew that it was just one step in the right direction.  But I guess I didn't expect us to get cut loose right away. 

They did a test called a Nerve Conduction Study or NCS.  In a nutshell, this test is used to diagnose

• Pinched nerves and inflamed muscles due to injury, a ruptured disk, disease or other conditions
• Carpal tunnel syndrome, characterized by pressure on a major nerve that causes pain in the wrist or hand
• Primary muscle disorders such as muscular dystrophy (a disease that causes certain muscles to atrophy, or waste away)
• Neuromuscular disorders such as myasthenia gravis (a dysfunction in nerve impulses that leads to chronic muscle weakness)
• Nerve disorders such as amyotrophic lateral sclerosis (commonly known as Lou Gehrig's disease)

So really, in a matter of moments with the help of a couple of electrodes, they were able to rule out a whole bunch of really scary disorders.  It really is some pretty awesome technology!

Now we are back to waiting.  Waiting for the MRI (November 5, 2011), waiting to get the results of her EEG and waiting for that ever elusive Neurology appointment.