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.
Showing posts with label prayers. Show all posts
Showing posts with label prayers. Show all posts
Wednesday, 7 March 2012
Friday, 2 December 2011
A Little Bit of Everything :)
Greetings Friends, Family, loyal readers! No real updates today on Leah herself, but wanted to keep you all up to date on everything else that is going on with her.
ROM Update
As some of you may have noticed via Facebook, I got tired of waiting for the ROM to respond to my complaint regarding their treatment of us. So I sent a more tersely worded email.
Referral
It is a long traumatising, aggravating, frustrating story - but basically Leah now has referrals to both the Neurology department at McMaster and at Sick Kids. We have the appointment for McMaster on Wednesday (YEAH!) and Sick Kids is reviewing her file and we should hear from them shortly (we've heard that before!)
Neurology Appointment
While at McMaster Leah will be seeing Dr. Callen (click to see his bio).
Is it okay to be excited(?) and nervous (nauseous) at the same time? On one hand, we will be moving closer to a diagnosis which is good. But on the other hand we will be moving closer to a diagnosis which is scary! Once we have that diagnosis there is no more pretending that everything will go back to normal. We will have to create a new normal for Leah and our family and I feel so unprepared.
So I have been doing what I do best: RESEARCHING. I started out with a 1 inch binder and have had to move up to a 3 incher. My printer is gasping for a break and all the Internet browsing has introduced a few viruses onto my computer - thank goodness Paul is a computer genius!
My brain is overflowing with details, stats, acronyms and info. Based on everything I have read (and by golly it is A LOT!), I have compiled a list of questions and things to discuss with the doctor.
I have also created an overview of Leah and her symptoms with a timeline of her bloodwork results to give him. I figure we have wasted a whole lot of time getting to this point and I really want to make this first appointment count for more than a meet and greet.
Normally I would have Paul, or my Mom come with us, just to have another set of ears. Someone else to ask questions and to fill in the blanks when I forget things later. (notice I said when not if...I know my weaknesses!) Unfortunately, the fates are working against me this week and everybody is busy, so I'm contemplating playing spy and taping a recorder on me (joking ?). All humour aside, I am going to do my best to suppress my natural awe of doctors and attempt to take control of the appointment and steer it in the directions I want it to go and to take notes along the way.
School and Leah
Still an ongoing issue, she missed 11 days in November alone. Her teacher finally went on her maternity leave so now she has a new teacher. She has been filled in on the issues but doesn't seem to completely have a grasp on it. To make things even more complicated the supply principal has been changed as well, so I have requested a sit down meeting with them both to review the protocol and update it as necessary.
She is occasionally wearing the pull ups when she feels it is necessary, and has disclosed to me that have been other occasions recently when it has happened but she was so embarrassed she didn't tell anyone. My poor baby girl, my heart breaks for her little bits each day. And yet, she is so stoic and matter of fact about all of this. She doesn't whine or cry about missing out on things, going to so many appointments or having so many tests. She makes me so proud and she makes me be stronger for her.
Alrighty, I think that is enough for today, if you made it this far thanks! I have always had a writing/talking style more like making a short story long, rather than a long story short!
Keep the prayer coming and your fingers crossed that we have a great appointment on Wednesday! I will update as soon as I can.
Thanks as always.
ROM Update
As some of you may have noticed via Facebook, I got tired of waiting for the ROM to respond to my complaint regarding their treatment of us. So I sent a more tersely worded email.
I am shocked and saddened to see that the staff at ROM have not yet responded to my email. Your auto reply states up to 3 days, elsewhere on the website it was stated up to 7 days. It has been 9 days and I have yet to hear from anyone.
Our friends, family and readers of a blog we have created for my daughter were quite distraught to hear how callously we were treated. I had hoped to update them with an explanation but it appears obvious to all of us, that it matters little to you how situations such as this can affect the enjoyment of one family and more particularly the enjoyment of one very sick little girl.
I am truly disappointed, we had expected better from the ROM.
Kate Balint
Needless to say this got a response within 90 minutes. From there things went very well. It appears there is some sort of glitch with their website comments page - they didn't get the original email, but they know I sent one because I had the autoreply. The woman I spoke to - the Head of Customer Experience, has begun to look into the incident, was very apologetic and understanding of our needs. She has offered to purchase or rent a larger stroller/pushchair for kids like Leah who don't require a wheelchair but are too big for the umbrella strollers they loan out.
All in all the experience taught me a few of things
- It is easier to take a stand for my daughter than for myself - usually I don't make complaints, write letters or cause a fuss.
- Taking a stand and making my feelings known, is not actually physically painful or emotionally traumatising! Who knew! I have been avoiding it like the plague for my entire life.
- I always knew the little phrase "If at first you don't succeed, try, try again", but I don't think I had ever put it into action in this way. Between our struggles getting a diagnosis and now with the ROM, I have a greater appreciation for such a simple yet powerful little phrase.
- Mention that you have a blog - and watch how quickly things move along! Again, the power of words! :)
Referral
It is a long traumatising, aggravating, frustrating story - but basically Leah now has referrals to both the Neurology department at McMaster and at Sick Kids. We have the appointment for McMaster on Wednesday (YEAH!) and Sick Kids is reviewing her file and we should hear from them shortly (we've heard that before!)
Neurology Appointment
While at McMaster Leah will be seeing Dr. Callen (click to see his bio).
Is it okay to be excited(?) and nervous (nauseous) at the same time? On one hand, we will be moving closer to a diagnosis which is good. But on the other hand we will be moving closer to a diagnosis which is scary! Once we have that diagnosis there is no more pretending that everything will go back to normal. We will have to create a new normal for Leah and our family and I feel so unprepared.
So I have been doing what I do best: RESEARCHING. I started out with a 1 inch binder and have had to move up to a 3 incher. My printer is gasping for a break and all the Internet browsing has introduced a few viruses onto my computer - thank goodness Paul is a computer genius!
My brain is overflowing with details, stats, acronyms and info. Based on everything I have read (and by golly it is A LOT!), I have compiled a list of questions and things to discuss with the doctor.
I have also created an overview of Leah and her symptoms with a timeline of her bloodwork results to give him. I figure we have wasted a whole lot of time getting to this point and I really want to make this first appointment count for more than a meet and greet.
Normally I would have Paul, or my Mom come with us, just to have another set of ears. Someone else to ask questions and to fill in the blanks when I forget things later. (notice I said when not if...I know my weaknesses!) Unfortunately, the fates are working against me this week and everybody is busy, so I'm contemplating playing spy and taping a recorder on me (joking ?). All humour aside, I am going to do my best to suppress my natural awe of doctors and attempt to take control of the appointment and steer it in the directions I want it to go and to take notes along the way.
School and Leah
Still an ongoing issue, she missed 11 days in November alone. Her teacher finally went on her maternity leave so now she has a new teacher. She has been filled in on the issues but doesn't seem to completely have a grasp on it. To make things even more complicated the supply principal has been changed as well, so I have requested a sit down meeting with them both to review the protocol and update it as necessary.
She is occasionally wearing the pull ups when she feels it is necessary, and has disclosed to me that have been other occasions recently when it has happened but she was so embarrassed she didn't tell anyone. My poor baby girl, my heart breaks for her little bits each day. And yet, she is so stoic and matter of fact about all of this. She doesn't whine or cry about missing out on things, going to so many appointments or having so many tests. She makes me so proud and she makes me be stronger for her.
Alrighty, I think that is enough for today, if you made it this far thanks! I have always had a writing/talking style more like making a short story long, rather than a long story short!
Keep the prayer coming and your fingers crossed that we have a great appointment on Wednesday! I will update as soon as I can.
Thanks as always.
Wednesday, 13 July 2011
Some Progress
As mentioned previously, I finagled an appointment at McMaster in the blood disorders clinic hoping we could parlay that into an earlier appointment in Neurology. Well I am moderately happy to report that little plan may have worked.
As I expected, after hearing a summary of Leah's recent problems and her medical history, the resident who was doing the pre-interview, started making the usual noises. "That doesn't really sound like a problem we would deal with." "This situation really sounds like a neurological issue." etc. etc. We quickly explained to him we were there with the intention of ruling out problems and hoping they would be able to help point us in the right direction.
The resident left to speak with the doctor in charge. When they returned to the room, the doctor in charge stated he wanted to help us expedite her neurologist appointment and to that end he would contact that department himself. He also gave us the name and number of the neurologist he wants her to see so we can pester the office ourselves. As well, he suggested we speak to our pediatrician and ask him to put some pressure on the office to get us in sooner.
Leah's nana was quite disappointed that they didn't even order bloodwork and could not be convinced to order the MRI, but I am quite happy that we got as far as we did - it is about all I expected.
I am not used to being this aggressive and it is not something that comes naturally to me. In fact, just starting this blog and taking our struggle public goes very much against my usually very private personality. But as hard as it is to overcome my meekness and reticence, I am willing to do that and much more to ensure that Leah gets the care and attention she needs so we can figure this out.
As of yesterday, Leah has gone gluten-free. We made this decision based on the loads of infromation sent to us by so many kind, caring individuals. So many of you out there have stuggled or know someone struggling with Celiac disease or gluten-intolerance and have identified some of Leah's symptoms as common to those medical issues. So in the interest of ruling out problems, we thought this would be a good place to start. After all, it can only benefit her, not cause any more problems if we are wrong. We had already gone dairy-free for her at the advice of her doctor, but there doesn't seem to be any change from that.
On the whole a positive day. We have crossed the 1000 views mark and quickly closing in on 1200. This whole blogging experience reminds me so much of that old shampoo commercial....."and she told friends, and they told two friends, and so on and so on......". And quoting my friend Amie McGregor .."
As I expected, after hearing a summary of Leah's recent problems and her medical history, the resident who was doing the pre-interview, started making the usual noises. "That doesn't really sound like a problem we would deal with." "This situation really sounds like a neurological issue." etc. etc. We quickly explained to him we were there with the intention of ruling out problems and hoping they would be able to help point us in the right direction.
The resident left to speak with the doctor in charge. When they returned to the room, the doctor in charge stated he wanted to help us expedite her neurologist appointment and to that end he would contact that department himself. He also gave us the name and number of the neurologist he wants her to see so we can pester the office ourselves. As well, he suggested we speak to our pediatrician and ask him to put some pressure on the office to get us in sooner.
Leah's nana was quite disappointed that they didn't even order bloodwork and could not be convinced to order the MRI, but I am quite happy that we got as far as we did - it is about all I expected.
I am not used to being this aggressive and it is not something that comes naturally to me. In fact, just starting this blog and taking our struggle public goes very much against my usually very private personality. But as hard as it is to overcome my meekness and reticence, I am willing to do that and much more to ensure that Leah gets the care and attention she needs so we can figure this out.
As of yesterday, Leah has gone gluten-free. We made this decision based on the loads of infromation sent to us by so many kind, caring individuals. So many of you out there have stuggled or know someone struggling with Celiac disease or gluten-intolerance and have identified some of Leah's symptoms as common to those medical issues. So in the interest of ruling out problems, we thought this would be a good place to start. After all, it can only benefit her, not cause any more problems if we are wrong. We had already gone dairy-free for her at the advice of her doctor, but there doesn't seem to be any change from that.
On the whole a positive day. We have crossed the 1000 views mark and quickly closing in on 1200. This whole blogging experience reminds me so much of that old shampoo commercial....."and she told friends, and they told two friends, and so on and so on......". And quoting my friend Amie McGregor .."
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