I have scheduled Julia with an Ophthamology appointment on the 20th just to make sure Julia's eyes are OK, as with brain injuries, and especially those resulting in hemiplegia (one sided weakness) often affect their eyesight. My gut tells me all is OK with her eyesight, but I just want to make sure before her Vaccine Injury settlement comes through later in the year (maybe). If she has issues, they will have to cover this as well.
I am going to also schedule an audiology appt for the same reasons - brain injuries often affect hearing - and just want to make sure she is ok, and I think she is, before the settlement.
Trying to get all my "ducks in a row" before the final settlement....if she needs help, it needs to be documented.
Will let you all know how she does....
She did great in PT today - she actually hung and swung from a bar today! I have video and will post if i can figure out how......and to think three years ago she couldn't even walk....GO JULIA!!!!
We will get through this baby girl! And our education is WORKING!
Mom
Tuesday, June 29, 2010
Friday, June 25, 2010
People come, people go......
So, I had an interesting conversation with a good friend tonight about an email she received from her mother - judging her on how she is raising her kids and the values, etc, she is instilling in her children. She got her email, the same day I got my letter............
It is interesting how those (supposedly) closest to us bail sooner than those who see the situation from a different perspective. I have decided to just let it be.....
Had a nice dinner with Shawn and his mom and her husband - their car license plate was "K -Sera".....I had never noticed that before.....
K-Sera Sera.....I guess that is how it goes.
So, we lose some, but we gain many. I have met so many wonderful, strong people and learned so much from others through this whole journey with Julia. I have "lost" many who I never thought I would have in a million years during this journey, but gained SO MANY MORE to offset the number that have dropped off. K - Sera.
Anyway, Jack and Julia, people come and go. The important ones stick it out, as I always will for you!
Love you kids!
Mom
It is interesting how those (supposedly) closest to us bail sooner than those who see the situation from a different perspective. I have decided to just let it be.....
Had a nice dinner with Shawn and his mom and her husband - their car license plate was "K -Sera".....I had never noticed that before.....
K-Sera Sera.....I guess that is how it goes.
So, we lose some, but we gain many. I have met so many wonderful, strong people and learned so much from others through this whole journey with Julia. I have "lost" many who I never thought I would have in a million years during this journey, but gained SO MANY MORE to offset the number that have dropped off. K - Sera.
Anyway, Jack and Julia, people come and go. The important ones stick it out, as I always will for you!
Love you kids!
Mom
Wednesday, June 2, 2010
What a couple of days.....
Memorial Day, 10am, Julia hit herself in the eye with a book - crying all day long, put her down for a nap at the usual time thinking the sleep would do her eye good - she got up at the usual time, and the bawling began again. So I called the ER to speak to a nurse to see if it was imperative that I bring her in to be evaluated - her eye itself looked fine, but she had been rubbing so much she had a good "bar brawl" shiner going on. Waited an hour and a half - no return call from nurse, so I took her into my clinic and stained her eye myself to check for a scratch - sure enough....there it was. Got her some human approved eye meds we use all the time and put them in. She was great the whole rest of the night and the next day. Her eye is fine now.
Today, she walked behind someone on a swing and got smacked in the head. Bloody nose, but all ended up being ok.
I feel so bad for her. The simplest task - picking up a book, walking behind a swing - things a "typical" 4 1/2 year old would do appropriately - she does not understand. And then she gets hurt.
My heart breaks for her often. How is someone supposed to be there 24/7 to protect her - whether at school, or at home, or at the park, or daycare, or anywhere. I hope somehow she "learns" from these issues as a "typical" child would. I am so tired of hearing from medicaid that she is "close" to "typical" and from other people who aren't here on a daily basis. I just want her to be OK. I don't want her to hurt anymore.
Today was an exceptionally crappy day for everyone here - not looking for pity to those who read this and misunderstand - it just sucks sometimes.
Tomorrow is another day. Chin up everyone here!
Susan
Today, she walked behind someone on a swing and got smacked in the head. Bloody nose, but all ended up being ok.
I feel so bad for her. The simplest task - picking up a book, walking behind a swing - things a "typical" 4 1/2 year old would do appropriately - she does not understand. And then she gets hurt.
My heart breaks for her often. How is someone supposed to be there 24/7 to protect her - whether at school, or at home, or at the park, or daycare, or anywhere. I hope somehow she "learns" from these issues as a "typical" child would. I am so tired of hearing from medicaid that she is "close" to "typical" and from other people who aren't here on a daily basis. I just want her to be OK. I don't want her to hurt anymore.
Today was an exceptionally crappy day for everyone here - not looking for pity to those who read this and misunderstand - it just sucks sometimes.
Tomorrow is another day. Chin up everyone here!
Susan
Tuesday, May 25, 2010
What a day so far..............
So, this morning Julia had her neurology follow up. The Dr was very happy with her progress since she saw her six months ago. She discussed repeating an EEG since it has been a long while, but decided it was really a moot point as, she was not going to take her off her seizure meds, as the area of the brain that is destroyed in julia's head is a prime site for seizure formation and since Julia has been seizure free on her meds, she wants to keep her that way. We discussed meds for attention span - as the Dr said that Julia was in her "prime" for learning. She is gauging her at about 18-24 months developmentally - and because julia has been doing some great things with immitation lately, she wants to take advantage of this great window that we have. She said the biggest thing holding Julia back was her attention span - which is about 10-30 seconds......so.......we are going to try some meds. She said she could NOT promise that it would help, but that it might, and that it in no way would make her at more risk for seizures, especially since she is on meds for seizures....so.....we will start her tonight at a very low dose and see how it goes. The appointment went well - Julia was happy for 90% of it and the Dr just commented on how different she was compared to the visit last year. Yeah Julia!
So, then the day kinda spiraled from there......I thought I was supposed to be at work at 1pm...so I rushed around after dropping Julia off at daycare to drop off her prescriptions - for the new med and her seizure meds, as those were running low as well. They asked if I wanted to wait for them, and I just said I would pick them up after work.....I then had a few spare minutes before work - so I took all the medical records that I ordered and paid for since december (over 100 pages just from PT OT ST) (this was a whole nother fiasco to get the records that we don't have to go into - I got them and that's all that matters....) into kinko's to make copies - a copy for the attorneys and a copy for the new pediatrician that is going to start seeing her - i ran the copies into the peds office and tried to make an appt for Julia just to meet the new dr so he could put a face together with all the records. I requested a tuesday - they said he doesn't work on tuesdays......so, I scheduled it on a friday in July that my boss gave me off for july 4th holiday. Then - rushed into work as I was running "late".
I walk into work and everyone just stares at me.............I'm thinking..."what......did I lose my job due to my memo" (those who know - know what I am talking about). Well, it turns out this was my tuesday off.....so I got Julia's medical records in an envelope so I could go back to kinko's and mail them. I get to kinkos - and they need the phone number of the attorneys office for the mailing. I don't have it on my phone. So I call Roberta, the life care planner, she doesn't answer her cell. I called her office - she is out. I begged the woman who answered to google her attorney to get me the phone number and she did. Whew....so, off the records went.
I then went to Walmart to pick up the prescriptions I had dropped off earlier. Well, a whole nother fiasco there! The neurologist had written one of the prescriptions with the wrong dose on it - just a simple "0" missing, but it was definately wrong and the pharmacist would not dispense them due to legalities - which I understand. So I call the neuro department and talk to the nurse about it - we get that all figured out, but they cannot get a hold of the dr to confirm the dose and OK it. The pharmacist and the nurse talked and we all agreed on what the dose was supposed to be and they dispensed me the new meds. BUT, then, on the seizure meds, the dr did not write or initial the "name brand only" part of the script - so, they could not fill that one until she does that, as with medicaid it is considered "fraud" unless the dr specifically states name brand only. I call the neurologist nurse back again.............and they said they were sorry and would get with the dr asap to get it filled. Holy Crap. Why do things that should take 15 minutes take two hours?? I left work at 1:30, and did not get back home til after 3pm just dealing with all of this.....all I wanted to do was watch a movie before the kids came home! Well, maybe I can watch part of one now......whew!
Lets hope the day turns around - my brain hurts!
Keep smiling - all in all, these things were aggravating, but nobody got hurt and tomorrow is another day! :)
Susan
So, then the day kinda spiraled from there......I thought I was supposed to be at work at 1pm...so I rushed around after dropping Julia off at daycare to drop off her prescriptions - for the new med and her seizure meds, as those were running low as well. They asked if I wanted to wait for them, and I just said I would pick them up after work.....I then had a few spare minutes before work - so I took all the medical records that I ordered and paid for since december (over 100 pages just from PT OT ST) (this was a whole nother fiasco to get the records that we don't have to go into - I got them and that's all that matters....) into kinko's to make copies - a copy for the attorneys and a copy for the new pediatrician that is going to start seeing her - i ran the copies into the peds office and tried to make an appt for Julia just to meet the new dr so he could put a face together with all the records. I requested a tuesday - they said he doesn't work on tuesdays......so, I scheduled it on a friday in July that my boss gave me off for july 4th holiday. Then - rushed into work as I was running "late".
I walk into work and everyone just stares at me.............I'm thinking..."what......did I lose my job due to my memo" (those who know - know what I am talking about). Well, it turns out this was my tuesday off.....so I got Julia's medical records in an envelope so I could go back to kinko's and mail them. I get to kinkos - and they need the phone number of the attorneys office for the mailing. I don't have it on my phone. So I call Roberta, the life care planner, she doesn't answer her cell. I called her office - she is out. I begged the woman who answered to google her attorney to get me the phone number and she did. Whew....so, off the records went.
I then went to Walmart to pick up the prescriptions I had dropped off earlier. Well, a whole nother fiasco there! The neurologist had written one of the prescriptions with the wrong dose on it - just a simple "0" missing, but it was definately wrong and the pharmacist would not dispense them due to legalities - which I understand. So I call the neuro department and talk to the nurse about it - we get that all figured out, but they cannot get a hold of the dr to confirm the dose and OK it. The pharmacist and the nurse talked and we all agreed on what the dose was supposed to be and they dispensed me the new meds. BUT, then, on the seizure meds, the dr did not write or initial the "name brand only" part of the script - so, they could not fill that one until she does that, as with medicaid it is considered "fraud" unless the dr specifically states name brand only. I call the neurologist nurse back again.............and they said they were sorry and would get with the dr asap to get it filled. Holy Crap. Why do things that should take 15 minutes take two hours?? I left work at 1:30, and did not get back home til after 3pm just dealing with all of this.....all I wanted to do was watch a movie before the kids came home! Well, maybe I can watch part of one now......whew!
Lets hope the day turns around - my brain hurts!
Keep smiling - all in all, these things were aggravating, but nobody got hurt and tomorrow is another day! :)
Susan
Thursday, May 20, 2010
WOW WOW WOW WOW WOW WOW!
Thank you so much to Professional Miracles Foundation for their generous grant for Julia's hippotherapy! I heard of this foundation through my mother's best friend many months ago, but never applied - just busy and figured there were so many other kids "more" deserving than Julia....but, one day at work, I had a spare minute, and went to their website, as Julia's funds for hippotherapy were running very low............I applied, thinking, "well, it won't hurt to ask" and sent in her info. A week later I got a response that they would consider her as a candidate. They asked me how much money I was requesting. I didn't feel right putting a number on it, and just said, "even one session at $60 would be great!". Well, today, about a month later, I got a voicemail - from a number I didn't recognize which is usually never good - and decided to listen to the message. SIX MONTHS of hippo! A grant for SIX MONTHS of hippotherapy once weekly - DONE! WOW! The power of putting yourself out there. Once Julia's settlement hits - hopefully by the end of the year - my hippo out of pocket expense - will be DONE! AND she still gets to go, as this will be covered by her settlement! I am estatic! It is NOT all about the money - as many might think - but, when it comes down to it - this was one therapy that was going to have to go until I got the settlement! And most of you likely saw Julia STANDING on the horse walking around the arena on my last post on facebook. SHE LOVES IT! I am sooooooooooooooooo thankful this will continue. Amazing what these foundations will do for kiddos like Julia! Thank you to all of those out there who really get it! Today was a GREAT day!
Tuesday, May 11, 2010
Closer still!
I got an email tonight (while shawn and I were on our "date" at the potty training for special needs kids lecture) from Julia's Life Care Planner. The Dept of Justice has entered their life care plan for Julia with the vaccine court. Now JULIA'S Life Care Planner and the DOJ Life Care Planner duke it out. Roberta, "our" life care planner, warned me that the questions were going to be coming in in droves over the next few weeks and it is time to finalize ALL out of pocket expenses and make sure we have ALL current medical records to support Julia's case in court. Looks like my "side work" is about to build up - but for Julia - it will be my PRIMARY work. If it gets too crazy, I will take time off of work. I'm sorry, little dog Fluffy, if you have diarrhea today, MY DAUGHTER needs me now!
I was day dreaming of a job at walmart bagging groceries. Shawn says I wouldn't last there, too boring and non-stimulating - but, really, I am ready....if only my finances were! haha! Looks like fluffy will have to continue to support me for now.
The toilet training lecture was AWESOME! AND it was put on by the SAME person that is doing the autism round table that shawn and I are attending! What a small world.
This special needs world is amazing - some of the things they talked about in the lecture tonight were so inspiring - the way people dedicate their lives to potty training the disabled (kids and adults) and the ways the figure out to do it!!!!! Maybe walmart is not my calling....maybe this special needs world is - just need to figure out which part of it......
Susan
Oh, we have IDEAS for Julia and the potty!
I was day dreaming of a job at walmart bagging groceries. Shawn says I wouldn't last there, too boring and non-stimulating - but, really, I am ready....if only my finances were! haha! Looks like fluffy will have to continue to support me for now.
The toilet training lecture was AWESOME! AND it was put on by the SAME person that is doing the autism round table that shawn and I are attending! What a small world.
This special needs world is amazing - some of the things they talked about in the lecture tonight were so inspiring - the way people dedicate their lives to potty training the disabled (kids and adults) and the ways the figure out to do it!!!!! Maybe walmart is not my calling....maybe this special needs world is - just need to figure out which part of it......
Susan
Oh, we have IDEAS for Julia and the potty!
Monday, May 10, 2010
Using Julia's Blog as a Calendar.....
Just trying to keep all these appointments straight...thought I would write them down here...
Tomorrow we have a brace fitting at the main hospital in Aurora at 11am - fourth floor. Then tomorrow night Shawn and I have a "date night" - a toilet training lecture for parents with special needs kids! We are so excited to get out! :)
May 25th, tuesday, we have a neurology follow up with Dr Parsons...can't remember what time, I think in the morning, can't remember what floor - I think fourth - at the main hospital in Aurora. We are going to discuss how the botox is going, talk about restraint therapy (casting her good arm), discuss meds for attention span - the pros and the cons, and remeasure her head to find out if it is growing. I am also going to ask about her hair...it is still so "baby like" - I have no idea if her brain injury and lack of head growth could have something to do with her "non aging" hair....silly I know, but its a question I have!
Also, Shawn and I have been invited to participate in a “coffee table discussion” with Dr. Susan Hepburn, nationally reknown autism researcher from JFK. I explained to the coordinator that Julia is not autistic per se, but that we do experience a lot of the same issues as parents of autistic children. This is on May 29th in the afternoon. This is exciting, as the discussion will be taped and used as a training aide for respite care providers working with kiddos like Julia. The coordinator said she was so excited that there would actually be a man there - when we were contacted, only the mothers' had volunteered their time. Thanks Shawn.
Wednesday, July 28th, we have a 4-7 hour neuropsychology evaluation in aurora at the main hopital at 8:30am til??? I am excited about this as this appointment will tell us about Julia's cognitive functions. I really want to know where she stands. I think she is smarter than many give her credit for, and even if she isn't, I want to know where she stands...so this is exciting!
I think that's it for appointments other than her usual weekly PT, OT, Aug Com, and Hippotherapy....those I can remember!
Susan
Tomorrow we have a brace fitting at the main hospital in Aurora at 11am - fourth floor. Then tomorrow night Shawn and I have a "date night" - a toilet training lecture for parents with special needs kids! We are so excited to get out! :)
May 25th, tuesday, we have a neurology follow up with Dr Parsons...can't remember what time, I think in the morning, can't remember what floor - I think fourth - at the main hospital in Aurora. We are going to discuss how the botox is going, talk about restraint therapy (casting her good arm), discuss meds for attention span - the pros and the cons, and remeasure her head to find out if it is growing. I am also going to ask about her hair...it is still so "baby like" - I have no idea if her brain injury and lack of head growth could have something to do with her "non aging" hair....silly I know, but its a question I have!
Also, Shawn and I have been invited to participate in a “coffee table discussion” with Dr. Susan Hepburn, nationally reknown autism researcher from JFK. I explained to the coordinator that Julia is not autistic per se, but that we do experience a lot of the same issues as parents of autistic children. This is on May 29th in the afternoon. This is exciting, as the discussion will be taped and used as a training aide for respite care providers working with kiddos like Julia. The coordinator said she was so excited that there would actually be a man there - when we were contacted, only the mothers' had volunteered their time. Thanks Shawn.
Wednesday, July 28th, we have a 4-7 hour neuropsychology evaluation in aurora at the main hopital at 8:30am til??? I am excited about this as this appointment will tell us about Julia's cognitive functions. I really want to know where she stands. I think she is smarter than many give her credit for, and even if she isn't, I want to know where she stands...so this is exciting!
I think that's it for appointments other than her usual weekly PT, OT, Aug Com, and Hippotherapy....those I can remember!
Susan
Subscribe to:
Posts (Atom)
