Four Years Ago Today

Four years ago today, my ignorance overtook me, and I allowed my daughter to get 5 different live virus vaccines poked into her left shoulder. I remember it like it was yesterday. Visions of the day keep going through my head. She screamed and cried, and so did i, well cried anyway, having NO IDEA what I had just done to my baby girl. I would find that out nine days later. Brain damaged - severely - forever.

Once again Julia, I am so very sorry that I just believed what all the Dr's told me. I was trying to do what was best for you. I now know better.

I have learned so much over the last four years. About vaccines, about careers and career changes. About the support from (most) family and friends. About loss of those who I NEVER thought would leave my side. About NEW friends to take the place of the family members I have lost. About GIVING and helping people in need. I think I have become a more compassionate person through this horrific nightmare.

I am thankful this year, that ALL of Julia's needs will be taken care of soon through the Vaccine Injury Compensation Program - that was a long four year battle, but we did it Julia! Soon, the financial worries for your care will disapppear! I just need to hire a really good attorney for you and an even BETTER accountant for me, as paperwork has always been a difficulty for me to keep up with, but I will, with everyone's help - especially an accountant.

Life is good, and I love you more than ANYONE would ever know. Love you baby girl - now and always.

Mom

Unemployment ROCKS!

Since I quit my job on Nov. 11th, here is what I we have done..........still working on finding another more suitable job for myself, but in the interim, have been trying to "pay it forward"....if kharma is real - we will get paybacks someday..........not to brag, but........it feels so good we have to share.....

1. Shawn and I got one of my future bridesmaids, Wendy and her two kids out of an abusive household, and they are living here in our unfinished basement until she gets on her feet.
2. Shawn found someone willing to sell Wendy his car for $500 (she has no transportation right now) - which I am going to buy for her and she is going to pay me back.
3. I managed to raise the $100K needed for my daughters therapeutic horse back riding facility, SaddleUp!......from ONE person (with the help of my mother and others) - plus the other small donations I got from fellow veterinarians. And I got a job offer for marketing from home with SaddleUp on a part time basis - AT HOME, so it won't interfere with anything I will do with the hospice/euthanasia job when it gets going.
4. I took on a part time job (just until January) cleaning for my other future bridesmaid, Pam, whose Nanny quit with no notice, who is buried in her home - she has her family of five (one brain injured), and another family of five - two adults and three children (one brain injured) living in her house right now - temporarily.
5. Shawn found someone willing to donate a cleaning crew to help clean up Pam's house - DEEP CLEANING - so she won't be so overwhelmed by the clutter and that is there simply because she doesn't have time to deal with it being a single mom to four of her own kids, and housing 5 others. AND the cleaning crew is donating close to $400 for her to get new sheets, towels, pillows, etc.

SO, that's what we have been doing. It feels SO GOOD to help those in need! WE LOVE IT! BUT, it doesn't pay the bills, but that will come...kharma is a GOOD thing!

Susan, Shawn, and Julia

santa

if you show julia santa.....she says "ho ho ho"..........her first words....since she was 12 months old - awesome!

She DID IT!

Among other things....


JULIA POOPED ON THE LITTLE POTTY THIS MORNING!!!!!!!!!!!!!!!!!!!!

YAY!

WOW, long time no blog......

Not that nothing is going on, but, just been a while since I posted anything!

Julia is doing well. She got a new brace which is pretty complicated, but she seems to tolerate it well and is ACTUALLY keeping her shoes on for the most part! Had to buy two different sizes of Stride Right shoes, which are spendy, but, hey, if it works, it works!

I have officially been unemployed for about three weeks now and am going crazy. In my spare time, I am trying to help Julia's hippotherapy facility with fundraising. They are in dire need of $100K before Jan 31st....so, I am doing what I can. Shawn and I have 7 news lined up to do a story in the next week or so (hopefully). And tomorrow I plan on going to every place I can think of to pitch an effort to raise funds to keep this place going! SaddleUp! Foundation is the name - you can google, and even a small donation will help. Tomorrow I plan on going to all the vet clinics in the area to talk to the owners about the work they do. And possibly all the therapy clinics and special needs schools I can find. What else do I have to do! HAHA!

Actually, I am meeting with Julia's new ABA therapist to go over a behavior plan here tomorrow around lunch time....she will be starting with Julia soon, and most of the work will be done, eventually, by Shawn and I, and her teachers at school once everyone gets trained. Thank God, that I learned at Julia's hearing last month, that this will be covered for the most part when the settlement goes through...another 3-8 months. In the meantime, I have some savings.

Julia has made some great strides lately - still no words or anything, but I think she has a lot going on in that little head of hers! I hope someday she is able to express it!

Anyway, I will try to post more regularly! Thanks to everyone still sticking with us!

Susan and Julia

It is DONE

We met with the special master today, along with Julia's attorney and Life Care Planner, along with the opposing Dept of Justice's attorney and LCP.....Our side was highly favored, and the last issue was settled in what I believe was a very fair way. The rest of the issues have been agreed upon by both sides.....I do not have any numbers to report on her settlement - should have the check and annuity set up within the next six months. Though I do not know ANY numbers, aside from ABA therapy which was settled today, I suspect it will all be very good for Julia. Praise God!

Thank you to all of those who have not left my side during this ordeal. It has been very up and down for everyone. Thank you mostly to my mother, who has told me she would always stick with me no matter what. Thank you to Roger, for loving Julia, with all her quirks (more than I think you love the others). Thank you for stepping up and fulfilling the role of grandpa for my kids. Thank you mostly to Shawn secondly, who stepped into this relationship, and was probably blindsided by what he got himself in to. Sure, the kids were cute when we were dating, but as time went on, and his time with us became more of a permanent nature, not three days here four days home, and with all of the realities of it hitting him - he did not run. (well, a couple of times, but he always came back...haha). And now we are going to marry in June. Thanks for your patience. Thanks for understanding my fight. Thanks for understanding my integrity. Thanks for supporting my job change in such trying times. Thanks for EVERYTHING you do for the kids. And thanks for putting up with me and my up and down emotions....sometimes down for long periods of time.

Thank you to my new friends I have met along the way - most notably, Pam, who sticks by me even when I just want to go shoot my gun out my car window. Who thinks I am crazy for quitting my job, but "gets it" and supports me. Who takes time out of her hectic days as a single mom to three typical boys and a brain injured daughter, to do things, like be my matron of honor, to come to fourth of july with us, to come for jacks birthday, to come to MY birthday last night (allbeit, 45 minutes late!! haha). For being MY ROCK, even when weeks go by that we don't talk. Thank you Pam for teaching me about advocating and not being afraid to tell it like it is and stand up for yourself.

Thank you Leticia, a single mom of two, one typical, one 21 yr old not typical child. Your patience and sense of humor and positive outlook on your kids lives really resonates with me - even if I don't show it just yet.....you have been doing this much longer than I have, and I hope to get to the place where you are in the next 15 years. I have only known you a short period of time, but would consider you as one of my close friends - I would never hesitate to share anything with you or confide in you in any way.

Thank you Kayanna, Anna, and Trina for all your help with Julia during the days and nights. Anna, you have stuck it out the longest and I truly appreciate all the time and understanding you give to Julia and our family. Kayanna - you took over the daycare after Dawn moved away like you knew exactly what you were doing - like it was a job created for YOU. I cannot thank you enough. Trina - I know with five jobs, fitting Julia in is an option for you, yet you continue to help when you don't have to, and that means so much to us too. I hope you know that.

There are many more friends and family members to thank, but these few are the ones sticking out right now.

Thank you to the many compassionate doctors and therapists who have helped me with this legal battle over the last four years. Many of you know me by my first name. Dr Stage, thank you for meeting me after hours twice now when Julia was tantruming and I just KNEW something medical was wrong - but it wasn't. Thank you for watching Julia and making cookies with her that night so that shawn and I could take Jack to a movie. Thank you for being an awesome pediatrician - nonjudgemental, real. Thank you to all of Julia's specialists, most notably, Dr Bjorker, who with two days notice, wrote a letter to the court stating the needs of ABA therapy for Julia - YOU helped us win today....in an amazing way. Thank You Harla Frank, who, during a midst of her own issues, took the time to prepare for and come to the hearing today - HARLA - YOU DID THIS. Your testimony was fabulous! I hope you know how much it meant to us. You are HIRED! Lets get you going!

Thank you to the Rise School of Denver. Without you, Julia would have never come this far - though she has a ways to go for sure! Your patience with this process has surpassed my expectations. I hope you understand how thankful we are for your presence in Julia's life and education.

And to the Dr's at Miami Children's hospital who told me it couldn't possibly be the vaccine the caused her injury - I hope someday you will accept the fact that vaccines DO cause brain injuries. THEY DO. Please do not cover it up to other families in the future. If you would like a copy of her settlement when I get it, you are welcome to it. I just want people to be honest and real.

I know there are many I have forgotten, and many that have "fallen by the wayside" that may or may not get this message...but it is primarily written for those who stuck it out and believed in my family and MY ability to get this done. IT IS DONE!

Thank you GOD for taking me down this path - it has been a long and difficult one, and I'm sure there is more to come, but you have reintroduced yourself into my life and I am forever grateful!!!!

Susan (Jack,Julia,and Shawn)

prayers

PRAYERS for tomorrow...damages hearing...only one issue they are fighting over...her BEHAVIOR, and NEED for therapy....seriously???????????????? Julia's LCP, who has been doing this for over 17 years, has NEVER had to go to hearing over one issue, especially BEHAVIOR in a BRAIN INJURED CHILD. But, alas, everyone has flown in from all over the globe, and we will be there for the whole thing tomorrow starting at 9am....Julia included....hahahahahahahaha that will last about 25 minutes. She WILL be there until the special master asks her to leave. HHHHMMMM......WHY ARE WE HERE???????????????????? BEHAVIOR??????????????????? AND YOU ARE ASKING HER TO LEAVE???????????????????????? Plantiff rests its case. Met with the Life Care Planner and Attorney tonight at my 40th bday party...WOO HOO!!! but it was good. Everything will be OK. Everyone is just shocked it has come to this. I KNOW WHY, and anyone who wants to know can private email me.....has to do with ABA and its "primary use"....for autism.....enough said???

Dr Wakefield!

I MET HIM! WOO HOO! What an honor to hear him speak and to actually speak to HIM briefly. I have been reading his books, listening to his interviews, following his knowledge for the last four years, and TONIGHT - I MET HIM! Even got a picture! I admire him for sticking to his guns on his controversial issues - as I have as well with leaving typical practice because of my views on the vaccination protocols for animals. Two peas in a pod, I guess! :)

Tomorrow.......

So, tomorrow is more than a "typical tuesday" of PT, OT, Aug Com....we have to get fitted for julia's (8th??) brace before her therapies....we were hoping the botox she had last month would restraighten her leg enough for the current brace to continue working, but, alas....NOPE. Time for a new one. This one is going to be pretty "complex"! It can work is two ways - as a tall one up to her knee, or as a short one only to her ankle.....so HOPEFULLY, we can make EVERYONE happy with this one, as none of her therapists can agree on what is best...and what do I know.....So, this convertible one should be great!

Expecting to hear from Julia's attorneys soon - if not, hearing is set for the fourth of November.....then at least this part will be done....then just to figure out how to go forward....which attorney do I need for this? So confusing. NEVER thought I would need so many attorneys. YUCK!

Anyway, it will all work out. As far as job prospects - I have a potential spay/neuter ONLY practice that wants me for at least two fridays in November...and they may hire me on for Friday, Saturday, and Sunday for a while. OR, if they don't....I have a potential offer with a mom of a 21 year old CP child (adult) who needs care every weekend....from $50 an hour to $15.....but, hey, if I can learn what may lie ahead for Julia - it would be great experience until Caring Pathways takes off! I am excited about either. AND excited to start exercising on my "days off" until Caring Pathways needs me! It will all work out. Forget the bad dreams I've been having lately.....as one friend put it - "I have always been a firm believer that if you are doing what is morally right, the creator of the universe will make a way out for you and provide abundant blessings." So, I am counting on that! :)

Good night all - and pray for julia's patience tomorrow during all the therapy and brace fittings!

Susan

WHEW!

My brain has felt like a walking contradiction for the last four years since the vaccine injury to Julia. I have 30 more days to deal with that. Looking for work in a totally different field....and will find it...We will be ok. Its going to be tight for some time until I figure it out, but, I just have this calm feeling that it is all OK. It is HIS plan, and we will be fine! No more vaccines for me - in 30 days.

Thank you God, and Larry Magnuson, and Don, my future former boss, for being so understanding.....And Lord help me Kohls, or Rod letting me be a snow plow driver. Time for something new!!!! SO EXCITED, yet scared. I may be doing wrong by my kids for the next few months, but the potential of the years after is outstanding! Larry, I am here for you!

Susan, Shawn, Jack, and Julia

Settlement is almost DONE!

We are 99.9% done with the settlement......no numbers yet.....they can't tell me until all attorneys agree - but we are almost there. Yeah Julia - you WILL be taken care of forever. I LOVE YOU BABY GIRL!

Written (supposedly) by a child with autism......very true.....Julia and our family to a "T"

I understand that we will be visiting each other for some get-togethers this year. Sometimes these visits can be very hard for me, but here is some information that might help our visit to be more successful. As you probably know, I am challenged by a hidden disability called Autism, or what some people refer to as Pervasive Developmental Disorder (PDD). Autism/PDD is a neurodevelopmental disorder which makes it hard for me to understand the environment around me. I have barriers in my brain that you can’t see, but which make it difficult for me to adapt to my surroundings.

Sometimes I may seem rude and abrupt or silly and out of control, but it is only because I have to try so hard to understand people and at the same time, make myself understood. People with autism have different abilities. Some may not speak, some will write beautiful poetry. Others are whizzes in math (Albert Einstein was thought to be autistic), or may have difficulty making friends. We are ALL different and need various degrees of support.

Sometimes when I am touched unexpectedly, it might feel painful and make me want to run away. I get easily frustrated, too. Being with lots of other people is like standing next to a moving freight train and trying to decide how and when to jump aboard. I feel frightened and confused a lot of the time. This is why I need to have things the same as much as possible. Once I learn how things happen, I can get by OK. But if something, anything, changes then I have to relearn the situation all over again! It is very hard.

When you try to talk to me, I often can’t understand what you say because there is a lot of distraction around. I have to concentrate very hard to hear and understand one thing at a time. You might think I am ignoring you – I am not. Rather, I am hearing everything and not knowing what is most important to respond to.

Get-togethers are exceptionally hard because there are so many different people, places and things going on that are out of my ordinary realm. This may be fun and adventurous for most people, but for me, it’s very hard work and can be extremely stressful. I often have to get away from all the commotion to calm down. It would be great if I had a private place set up to where I could retreat every time I go to get-togethers.

If I cannot sit at the meal table, do not think I am misbehaved or my parents have no control over me. Sitting in one place for even five minutes is often impossible for me. I feel so antsy and overwhelmed by all the smells, sounds, and people – I just have to get up and move about. Please don’t hold up your meal for me – go on without me, and my parents will handle the situation the best way they know how.

Eating in general is hard for me. If you understand that autism is a sensory processing disorder, it’s no wonder eating is a problem! Think of all the senses involved with eating. Sight, smell, taste, touch AND all the complicated mechanics that are involved. Chewing and swallowing is something that a lot of people with autism have trouble with. I am not picky – I literally cannot eat certain foods as my sensory system and/or oral motor coordination are impaired.


Don’t be disappointed if Mom hasn’t dressed me in the best clothes there are. It’s because she knows how much stiff and frilly clothes drive me buggy! I have to feel comfortable in my clothes or I will just be miserable. When I go to someone else’s house, I may appear crabby. Things have to be done in ways I am familiar with or else I might get confused and frustrated. It doesn’t mean you have to change the way you are doing things – just please be patient with me, and understanding of how I have to cope. Mom and Dad have no control over how my autism makes me feel inside. People with autism often have little things that they do to help themselves feel more comfortable. The grown-ups call it “self-regulation” or “stimming.” I might rock, hum, flick my fingers, tap a string, or any number of different things. I am not trying to be disruptive or weird. Again, I am doing what I have to do for my brain to adapt to your world. Sometimes I cannot stop myself from talking, singing, laughing, or doing an activity I enjoy. The grown-ups call this “perseverating” which is kinda like self-regulation or stimming. I do this only because I have found something to occupy myself that makes me feel comfortable. Perseverating behaviors are good to a certain degree because they help me calm down.

Please be respectful to my Mom and Dad if they let me “stim” for a while as they know me best and what helps to calm me. Remember that my Mom and Dad have to watch me much more closely than the average child. This is for my own safety, and preservation of your possessions. It hurts my parents’ feelings to be criticized for being over-protective, or condemned for not watching me close enough. They are human and have been given an assignment intended for saints. My parents are good people and need your support and not rude remarks.

Gatherings are filled with sights, sounds, and smells. The average household is turned into a busy, frantic, festive place. Remember that this may be fun for you, but it’s very hard work for me to conform. If I fall apart or act out in a way that you consider socially inappropriate, please remember that I don’t possess the neurological system that is required to follow some social rules. I am a unique person – an interesting person. I will find my place at these celebrations that is comfortable for us all, as long as you’ll try to view the world through my eyes!



-Author Unknown



I do not know who wrote this, I do feel it can help so many, Bless the child that wrote this letter.

Seriously?

Why do bad things happen all the time to good people?

My mother got fired from her job of what, 15 years? One of my good friends got evicted from her apartment where she was living with herself and her two kids (and getting a whopping $125 a month in child support from her ex who makes bank, but claims to be unemployed). And many more examples available......as "some" would say - Karma - but I disagree. These are good people living in a world that just isn't fair at times.

We hope to be hearing something about the settlement in the next month or so.....so, hoping I can help out at least these two people if not more. I just don't understand it.

Julia is a bit sick this week - very grumpy, runny nose, tired, etc.....Hopefully she will be feeling better by saturday for the tournament. Lots of giving people have donated, and, if the weather holds up, it should be a success. Have to keep looking on the bright side! Haha!

Got some great pics of Jack and Julia, Shawn and I this last weekend. Can't wait to get some framed for our house! The photo session was a little like "herding cats", but we got it done!

Take care everyone! Hope to have some good news soon! And we may have three more roomates soon - just want to help out a good friend and her two kids!

Susan

Tourney info...contact shawn..again, copy and paste as my links don't work....

We, Shawn and I, are hosting a charity Softball Tournament on Saturday, October 9th to benefit The Rise School of Denver, a school for children with special needs located in Denver. At this time I feel it is appropriate that I disclose that our daughter, Julia attends the school. However, any proceeds raised will be given directly to the school for materials, tuition assistance for some of the other parents, and the general running of the school, not for Julia's tuition. They run entirely off of private money and donations. You can read more about this amazing school here: http://www.riseschool.org/denver/

Please let me know if you would be interested in bringing a team, looking to play on a team, sponsoring (very important!), or helping out with organizing. Any donation from $1 to $1M would help our cause. Also, please forward this to others that you play with that you think may be interested or be able to put together a team. Any company that donates will be allowed to set up an information table, and/or put a banner at the field, and have their name noted on the printed material and t-shirts.

The price for the tourney will be $225 per team.

We are also working on prizes for teams, so I will be checking to see what everyone prefers but I expect to have some nice awards, t-shirts, etc. Some possible donors include Chick-Fil-A, Direct TV and Microsoft!
The tournament website is www.shawnckelleyrealtor.com

Thank you all for your time and consideration! I know times are tough for all of us, but if you could help, some amazing kids would really benefit. Any questions, please feel free to contact us!

Sorry is some of you get this twice! :)
--
Susan Lawson (mom to Julia Grimes - brain injury in January 2007)
drslawson@gmail.com
303 335 7448


Shawn C. Kelley
Realtor/Broker
Absolute Real Estate Services LLC
(303) 570-8354
shawnckelleyrealtor@gmail.com

Lots of thoughts today...............

We woke up this morning..at about 9am - got to sleep in a bit, though Jack was already up and Julia was kicking the walls trying to get out of her "bed".....woo hoo....

We then decided to travel to Elizabeth to an "Alpaca Festival"....yes you read that right....alpacas.....Jack LOVED it. He was so infatuated with the chickens running around, the alpacas, the ducks, the goats, the food, and, of course......................the girls running around....LOTS of them, but he took a liking to one in particular. She was cute. THey chased the chickens a lot.

Julia was a little hesitant with all of it. She, too, was very interested with the chickens, and tried her best to chase them around, but never caught one and got frustrated. At one point, she saw Jack and his new girlfriend chasing them around and tried so hard to get into the action, but after about four steps, realized she couldn't physically do it, and just melted into a heap of sorrow. It is starting to get to the point where she realizes she is different somehow. I huddled with her on the chicken poop covered ground and just told her it was ok, even though I was crying too. She is TOO cognitive and has TOO much receptive knowledge - she KNOWS she can't do what the other kids can do, AND she can't talk.....She and I were at our breaking points today, but I think we both hid it pretty well.

Then, tonight Shawn and I got to go to dinner. What a wonderful dinner we had (on a gift card no less!!!). Again, I don't mean to look for triggers, but I find them everywhere. There was a super long wait for a table - Homecoming.....all the kids dressed up and looking pretty and trying to impress their dates...I could not stop my mind from going to that place - Julia will likely not go to homecoming in this manner. I tried to let it go. Then we were seated, and in my view, directly at the table across from us, a boy, about 12 years old, clearly autistic. Shawn and I managed to have a great dinner and good conversation, and good repoir with the waitress (who I may need to help me with a job soon-haha). It really was a good night. I am just scared about the future of everyone in my family. Not just income, but FUTURE. What are Julia's potentials. Where will Jack end up. What about Shawn and I. How will I make enough money if I leave the typical practice of Vet Med. My brain hurts.

It will all be OK. It will work out fine. Take it ONE DAY AT A TIME. All I (we) can do at this point.

Thanks for listening. Keep your prayers for Julia.

Susan

Woo Hoo

I AM IN!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Julia's Softball Tournament to raise money for the Rise School!

Things are going good with getting ready for the "Rise to the Challange" softball tourney that Shawn is putting together. We have about 7 teams (wish we could get a few more....), and several people who have volunteered ther time to help out. We got the fields reserved in Lakewood, working on umps, and mostly just trying to organize and figure out prizes, sponsers, booths, banners, etc for the event. We want this to work out and be profitable because The Rise School of Denver is just so great. They have been so patient with all of the intrusiveness of the attorneys and different Life Care Planners and other evaluators. They have made Julia A PART of a classroom, instead of being placed "apart" in the public school she attended for a year. They are just the best, and all proceeds go to the School, not a dime to Julia's tuition. We want to help. So, pray for success! And a special Thank you to Colorado Service Dogs for all the information you gave to Shawn yesterday to help spread the word. I am still shocked at the coincidence of meeting Dobbie and hearing about you at this perfect time!

Lots ahead!

So, tomorrow, Julia has her second round of botox under general anesthesia to help re-straighten her left leg. It has turned inward so much since her last injections 4 months ago, that her new brace is not fitting anymore and she REFUSES to wear shoes. I have experienced the people reprimanding me about her shoes, or lack there of, for years, but today, Shawn got to experience it pretty intensely. I hope the anesthesia goes well, again, as it did last time, but of course I am a nervous wreck. I hope her leg straightens out again appropriately so that we don't have to go through all the appointments to get a new brace soon. We JUST got this one!

The settlement is wrapping up. I think it will end in a settlement soon, or else on November 4th, there is a hearing set to END it. I am having nightmares everynight - the one last night that I had - we ended up with $250 for everything!! WOW! That better not happen, or I WILL appeal, which, with an appeal, you never win - but hey, for $250 it would be the point of the appeal. I am sure things will be OK. Probably not Hannah Poling OK (if you aren't familiar with her settlement for MMR and autism, just google her name), but I expect at least half of what she got. Once we get the settlement - that is IT. No more medicaid, no more nothing - everything comes out of the fund. Please pray for it to be fair, if not more than fair, for the loss of who she could have been.

I am feeling so stressed, that even in my dreams, I am telling myself how I just want to lay in bed for a month. Seriously, the other night, the dream I had was a current version of me talking to a younger version of me, and discussing how emotionally drained I am. Done. I was talking to the younger version of me explaining how she could change things so that life would not be so challanging in the future. Just a dream.

Though all this sounds negative, there are a LOT of positives going on in my life right now. A real potential for a new, more appropriate job for myself to support my family. The settlement, which the paperwork over the last three years has consumed my life, is almost done. A WONDERFUL caregiver for Julia. LOTS of helpers who truly care about Julia and my family. LOTS of good stuff happening.

I am just stressed. I want tomorrow to be over. Have to be at the hospital at 745, and then get to work by 1pm. The screaming and tantrums. The phonecalls to attorneys and medicaid and doctors and everything else. I am exhausted. I know this is Julia's blog, but I am just whooped. I crave my bed and quietness.

Enough complaining. It is what it is, and it will get better very soon. There are lots of changes coming that are going to turn many things towards a more positive direction.

Almost bedtime for Julia, then just one more to get down, then I am done - to get up tomorrow and do it again.

Julia - you are one amazing kid. Even with all the behavioral issues, you perservere and show me why I do what I do.

I LOVE YOU JULIA and we will be FINE!

Susan

Please God, let me know my path......

I have a meeting with Dr Larry Magnuson on Tuesday morning. For those who know, you know how important this is for me! I hope to get somewhere with him on Tuesday. My life has evolved in a new direction and I hope this Dr Larry is a start to a new beginning for me and my family.

Julia is doing great. We have hired a new ABA therapist, and she will be starting with Julia very soon. This should help greatly with some of her more trying behaviors. Julia is doing great in God's grace and His plan for her and for my family.....it is hard for me and for Jack, and for Shawn, but...it is his plan, and we will keep on keeping on. I truly feel something is going to change soon! I just read 180 pages of Temple Grandin's new book - "The Way I See It" - and have a new insight into how Julia may percieve her world. Helps to read and understand these things - how difficult it must be to be her. Sometimes we get so caught up in how it is to be "us" but this book opened my eyes to what it is like to be HER. I know several people in Shawn and I's family who should read this book, but will not push it on anyone. So odd how the themes of family, taking a step back, travel through all of our families. I do not feel so alone anymore - this is sad, but normal. Even some of the stuff I have gone through in the last week with Jack and school - all normal for the life of a family with a disabled child. Crazy!

Anyway, Will let you know how Tuesday goes. I hope to have a new career soon, but we will see.......not putting all my eggs into one basket - I have a family to consider here.

Take care, all!

Susan

PDD-NOS

So, Julia got the diagnosis, sort of - PDD-NOS (pervasive developmental disorder - not otherwise specified). So, she is "kind of" on the autism spectrum. This may help tremendously with some insurance issues and may open up more opportunities for her with different programs out there. So, I guess I should be happy, right? And it doesn't change who she was yesterday, or who she will be tomorrow....its just a diagnosis. Anyway, I'm having mixed feelings about it. Glad for the extra opportunities for her, but more aggravated than ever with those who say vaccines don't cause Autism. When I get her case report from the Vaccine Injury Compensation Program - anyone interested is welcome to read it. Vaccines do cause brain injuries which lead to autism - all I have to say. I have living proof.

Susan

Wow, long time since i posted anything.......

Life moves at a very rapid pace, I have seen lately. So much has happened with so little time to document anything. I will try tonight.

First and foremost, my new daycare provider, Kayanna, is a miracle sent from God. She has jumped right in and done above and beyond what I expected. I can't wait for the settlement to hit so I can pay her better for her time that she dedicates to not only Julia, but our whole family. We are pretty sure funds will be allowed for live in care when we get the settlement, and I think she is it. What a great provider and friend she has become in such a short period of time. THANK YOU KAYANNA! Julia LOVES you. We love you for taking the time to take her places, just like any other kid, and being able and willing to overlook the stares that come with doing so. Shawn and I ordered some business cards to hand out to those who give those evil looks, or say those evil things when she is out and tantruming. I experienced this yesterday while at Elitch's with the kids when Julia was melting (from the heat and overstimulation).....can you believe a group of people behind us in line said, "if that were my daughter, I would have slapped her in the face by now"....I just picked up my daughter, held her close, and turned and gave them the evil eye - and to those of you who have experienced my evil eye - it speaks volumes - no words really needed - but I would have liked the business card.

Secondly, I have met an amazing veterinarian who has gone through a horrific murder of his son many years ago, who understands loss, and wants to become a part of my family's life. I so hope he keeps in touch. His son's story was documented in a book called "10 Minutes Till Midnight" and I read all four hundred pages in just over two days. What an inspiration. His biggest thing he has taught me is to stop questioning God. God has his plan, and everything happens for God's reason. It has helped me immensely when I find myself frustrated with Julia. Saturday, as I was towards the end of the book, I snuck in to Julia's room, and just watched her sleeping for about 10 minutes, said lots of prayers for her, and for my family, and she woke up HAPPY, instead of crying like usual, and she had the best night ever. Maybe she felt it, I don't know. I am trying to forgive and not be angry with everyone about what happened to her. It is hard, though, to forgive a pharmaceutical company and a government who knows what vaccines are capable of. It isn't like I have ONE person to forgive for murdering her....because she wasn't murdered - she is still alive, but damaged, and by something manufactured to protect her..but I just know too much about vaccines to let it go. I keep thinking about the other kids I have learned of injured by vaccines. I keep thinking of my friends and the decisions they have to make with their children after knowing Julia and I. I keep thinking of all the new babies arriving happily to their new families who will also suffer Julia's fate. Anyway, I will stop rambling. I will get there some how, some way.

Lastly, Julia started back at school today. She is in a new class, and did just fine today. Shawn sent me pictures from the drop off, and one of Julia's classmate's moms emailed me today to see if we could get the kids together and get to know each other better. Jack is back in school and doing great. He joined the cub scouts and is at his first meeting tonight with Shawn, who is pretty sure he will be a cub scout leader.....like we need another thing on our plate....but that is just Shawn.....we will figure it out and make the time to do it. I'm just glad Jack has this opportunity.

Anyway, things are going well here. Shawn and I are speaking for the "Professional Miracles Foundation" next Monday night at Pradera Golf Club. Shawn has also organized a softball tournament to raise money for Julia's school which is a non-profit run special needs school. All money raised will go to the school, not to Julia's tuition, so if anyone is interested email me or him for details. It is scheduled for October 9th.
Julia is also going to be video taped using her augmentative communication device (her "talker") by the manufacturer, as Julia's Speech Therapist is so impressed with her ability to figure it out. They are going to tape her at Speech Therapy, at her school, The Rise School of Denver, and at home. Pretty excited about that. Shawn and I were also video taped at a round table discussion on children with disabilities and training of respite care providers, which should be out soon. Whew! We are busy folks - but everything we are trying to do is good - and it is all for others - so we feel great about it!

Julia is scheduled for a "stroller/wheelchair" fitting next month to make outings a bit easier, as it is hard for her to walk long distances and she gets tired and her leg starts hurting. She is also scheduled for her next round of botox to "re-straighten" her leg again- the last round has worn off...hopefully the botox will prevent us from having to get her another new brace, as the one we just got is no longer working due to the worn off botox.....ahh, the appointments just keep coming, but - DON'T QUESTION GOD'S PLAN. Yes, Larry, you are right. I will just keep rolling with it.

Thanks to all of you who continue to follow and support Julia and our families efforts for everyone!

Susan

November 4th....

We should have some answers by November 4th....that is when the hearing is set, as both sides have not been able to come to a settlement for Julia. So a hearing as been set, in front of the Special Master, to duke it out and finish this thing up. So, I am looking forward to this being finished....it has consumed my world for three and a half years. I want it DONE. And it will be soon. What a great birthday gift - especially for my 40th... I asked if there was anything else I could do to help, and the attorney was real nice and said I have done all I can and thanked me for being so on top of everything. That was nice - epescially from the mouth of an attorney! HAHA.

So, keep Julia in your prayers for these next few months - this is it everyone!

Susan

From Exceptional Family TV.....these words are so true for my family and I today.

By Renee Charlan

I have been searching for a way,
A way to have a voice.
A way to be a voice;
A way to hear her voice.

I have been searching for a way to figure out what it is I am feeling.
To figure out if I am happy, if I am sad or if I just AM.

I have been searching for a way to be the woman I want to be,
The wife I know I can be,
To be the mom she deserves me to be.

I have been searching for a way to be a friend again,
One who laughs and loves with all her heart.

I have been searching for a way to know myself better,
To love who I am and to learn from my past.

I have been searching for people who know and understand things I go through everyday,
people who understand the loss of dreams, yet always search for hope.

I have found hope.

I have found it through the people who open their lives to us,
Through the families who have become the voice for their children.

I have found it through the strength I see in mothers who never leave their child’s side; Through the friends who are always there no matter what you’re going through.

Through the people who have experienced tragedy and have come out on the other side filled with hope and love.

I have found hope through all of you,
And I thank you so much for the love and support everyday.

Saying Goodbye is Never Easy

So, my most wonderful, supportive, hardworking, dedicated daycare provider is packing up her truck today and leaving tomorrow for Iowa. She has been watching Jack and Julia for just about two years now. Oh, the memories. The odd way I met her. The seizure in 9-08 followed by her calling 911 when she couldn't reach me, the firetruck and the ambulance showing up to her house (where she had to still watch and control about 6 other kids amidst the chaos) to save my baby -mind you this all happened on the second day that she had ever watched Julia. I was SURE she would not want her back after that, but when Julia was back out of the hospital, I reluctantly called her, and she was waiting with open arms for her to come back to daycare. The determination she had to make a difference in Julia's life. The hours of support she gave to me when I thought I was going to lose it over the last two years. How do you say goodbye to someone like that? Well, I got her a nice card, and gave her a generous bonus, and a big fat hug and lots of tears. I will miss her dearly.

The interesting thing is, what brought her to this move to Iowa, was her experiences with Julia, among other things of course. But Julia had such an impact on her, that she decided to look into careers helping special needs children, and to help their families. And she found the perfect job, in Iowa, where her family is, and simply could not turn it down. I understand her decision 100%, and I am proud to say that, if not for Julia, she never would have thought about this as a career. If she can help MORE kids than just my one, and help MORE families, than just mine, then - GO GET EM Dawn. You are an amazing inspiration to me.

So, hard to say goodbye, but everything happens for a reason I suppose.

I found a new daycare provider who is so super excited to help Julia. She has already told me all the wonderful things she wants to do for her. She wants to get Julia "out" into the community more to learn how to function better in social situations. She PROMISED me she would get her potty trained - we will see about that one - but she seems determined. She has watched her the last two nights and said she had no problems with her at all and that they seem to have already connected. She is persuing her undergrad in education, and then plans to get her masters in Special Education. She has worked with many autistic children (older - in their teens - and she wants to get julia to a better place sooner than these kids did). She is a dream come true so far - she even called me yesterday while I was stuck at work, and asked if she could pick up a few things that she noticed we needed for the home and kids......really??????? Seriously?????? She came an hour early yesterday to help go through all the kids clothes and get rid of the too small ones, and she bought hangers to hang up and arrange the clothes that do still fit. She sat here happily til midnight until Shawn and I got back from his 20th high school reunion last night, and then stayed til 1am just talking about how excited she was to have met us! AND, her favorite restuarant is the RIO! Her favorite music is COUNTRY, and she loves going to all the concerts that I wish I could go to! A match made in heaven I would say....

So, hard to say goodbye to my longtime friend and care provider today, but so far, easy to say hello to someone new - it will all work out!

Susan

Amazing DAY!

So, the news from children's wasn't so great, but not horrible either. I had a conversation with Julia's Life Care Planner after her appointment which was reassuring.

Then I had three hours to do nothing....no kids....(well laundry, but that is relaxing for me), and I had three other FANTASTIC phone calls that I think are going to affect my future greatly! I am ESTATIC tonight and hope it continues...............God has his eyes on my family lately and I hope it all works out!!!!!

Just when you think you are sinking, prayer does work!

Good night all!!!!!

Susan

NeuroPsych Evaluation

We just got back from Julia's neuropsych evaluation - only took about three and a half hours instead of 4-8, so that was good. She was in FULL OUT tantrum mode when we (my mom, shawn, julia, and I) got there, so the Dr got to witness that part of it. While they did the testing on her, the Dr talked to us in a separate room about, well, everything. This woman was AMAZING. I am so glad to have been set up with her for the appointment. I think she will be an amazing advocate for Julia's case, as there are a lot of things the attorneys are not agreeing on at this point.

Good news and bad - good news first - Julia has increased her scores on the Mullen Scale in the area of gross motor function from when she was evaluated in November. Bad news, she has regressed in Visual reception, Fine Motor, Receptive Language, and Expressive Language since november. Well, we have been seeing it lately here at home and even school has mentioned it regarding the tantrums. So, there you have it. Basically she is functioning at 18-22 months....still.

So, not the best news today, but, hey, tomorrow is another day, and if we can get Julia going with some of the therapies this Dr HIGHLY recommended - primarily ABA therapy, she thinks we can get her higher. But ABA is not covered by insurance.....I have a little money saved up for her school, and could throw some at ABA for a while if I have to - just pray they will allow for this therapy in her settlement. It is pretty intensive behavior therapy - she suggested it be done daily - someone at school - and someone at home....that's going to be a pretty penny.

Well, keep her in your prayers, and may the government do the right thing by her.

Susan

GREAT NIGHT!

Julia's pediatrician rocks...that's all I can say right now. WOW!

Great Day - and Eye Dr Appointment

So, this morning, Shawn took Julia to PT and Aug Com. He discussed Julia's behavioral issues a little bit. The PT recomends we do the botox again, as Julia's leg has started to turn inward more than when the injections were working. I guess we will schedule this again soon. I will be less scared this time, as I know the anesthesia is short, and she will be back to normal, other than a little grumpy for just a day or so. Shawn spoke with her Aug Com therapist about Julia refusing to use her talker and throwing it on the floor - and she didn't seem TOO concerned - as she has been showing signs of just being "mad" with more than just her talker. (terrible 2'S at 5?) Hopefully it is just a phase. I contacted the behaviorist - who does not take insurance - so this will have to wait for the settlement. We got a name from Julia's Aug Com therapist, from childrens in aurora, who does "free" consultations on behavior, so, if she doesn't simmer down, we will do this while she is out of school in august.

While Shawn took Julia to therapy, I contacted a homeopathic veterinarian in wheatridge. Actually I emailed her a couple days ago, but she answered this morning and gave me her phone numbers to contact her. I called and she was ready and willing to talk to me today about how I would start the process of the "transfer" from allopathic to homeopathic medicine. She described a "wall full of nasty vines, and spiders, and yucky stuff, covering a door - and that if you get the guts to open that door - you would never go back. I sure hope so. I still do not know how I would do this financially and timewise, but, hey, I have learned that everything does present itself at the appropriate time, and it WILL work out if I want it to. And I do. SO - in my mind - DONE. (How do you like that Howard and Mary???) :) This woman was amazing. Above and beyond what I was expecting.

Oh the eye dr - everything OK except a possible "left periphery issue" from her right sided brain injury (well, global injury, but primarily on the right). So, I was pretty happy with that.

Anyway, Julia's pediatrician will be here tomorrow night - he is going to make cookies with her and bring a Mickey Mouse CD. I called him tonight to confirm, as I had Julia in the car (never good) and she was screaming - and he said he will be here tomorrow and wouldn't miss it for the world!

How are all these awesome people showing up in my life right now? Oh, yes, God, or "the Universe", or whatever you believe in - stolen from Pam - "Believe -Prayer Works".

I LOVE TODAY!

Susan

Guess who's coming to visit?

My New pediatrician is just amazing. I took Julia in yesterday due to her being so "bipolar" after hours. He is in is "senior" years of practice, but still insists on taking calls. My helper, Trina, went with me, one - for moral support, and two - to tell him I really wasn't crazy about what I was seeing in her changing behavior, as she is here at least once or twice weekly, and last night she was ready to WALK.

Anyway, I got a call on my cell tonight around 7pm - thought it was the pizza guy, lost, so answered it, and it was my ped - calling again from his cell. He told me he has some of his rehabilitation classes in the springs tomorrow morning, but WANTS to come to the house on wednesday night, and watch Julia, by himself - with no distractions from family, to see what he can see and what he thinks is going on with her. No charge. No nothing. He just wants to do what he can to help. He even offered to bring Otter Pops - Julia's favorite thing ever! WOW. Can you imagine? I can tell you that I personally would not have the time to do this for any of my clients. What a guy. He has been practicing in Castle Rock for many many years and has the best reputation around - and now I know WHY!!!! Of course, Julia will likely be a perfect angel on Wednesday - as a change in scenery or people sometimes calms her down, but, even if he can witness ONE tantrum - maybe he can help.

I am so happy to have found this Doctor. What a great guy.

Will let you all know how it goes! Jack, Shawn and I plan on going to Toy Story 3 that night.....should be fun.

Susan

What a week....

Julia was put on a medicine for attention span about a month ago. At first we noticed horrible side effects when she was on a higher dose twice daily. Very tired. Irritable. Tantrums. I called the neurologist who said to decrease the dose by half, so we did. Only gave meds at night. Didn't see much other than her being tired after the meds. She slept well - as she usually did anyway.

We were instructed to increase the meds to a lower dose twice daily - morning and night - and WOW. What a nightmare. Normally she only really tantrums at home in the evenings - and they are usually "mild" (well, what we are used to), but they increased to ALL day long and the caregivers during the day started to question what the hell was up with her. When she went to Hippotherapy last week - the therapist said she seemed "drunk" and couldn't even walk the horse back in to do the brushing and feet, etc. I called her ped on friday and he told me to just stop the meds and get her back to baseline before we started something else - if anything at all.

Today was almost unbearable. She was FINE when she was in the pool, but in between - it was like she was bipolar. Happy and laughing and smiling - and the two seconds later - tantrums - throwing herself on the ground. NO consulation helping.

We put her down for a nap - thinking it was just the water and the sun - when she woke up - happy as a clam - then once we got home - horrible tantrums. Her caregiver that helps in the evenings was ready to walk out - but instead walked (drove) WITH ME to the pediatrician to make sure nothing else was wrong. I was kinda hoping she had a raging ear infection, but, no.....all ok - except her brain. He recomended either trying other meds (which shawn and I are afraid of) or a behaviorist. I sent an email out to a behaviorist to see what they say.....if they think they can help. Something has to change. The screaming and crying is out of control. I hope I hear back from her soon.

Meds or no meds...that is the question. I know meds help many, but know they all cause different issues with each individual. I DO NOT want to over medicate my daughter. The pediatrician respected my opinions, but did recommend giving her some time, and possibly trying another, as there MAY be one out there to help her attention span - and give our family some sort of "normal" or more normal life. BUT, if we have to go through this crap for months trying to find the right one - is it really worth it? Not just for all her caregivers and her brother - BUT FOR HER????????????????? I don't know the right answer.

I have been thinking of a change in my vet career to one of alternative medicine - so, why would I not consider this for my daughter? Well, I DO. But none of this is covered with insurance, and, well, my salary, Julia's school, my rent, my son, food, etc........are already putting me in the hole at least $500 - $1K per month. So,what am I supposed to do. Keep with what insurance will cover for now - but something has to give soon.

I love my daughter with all my heart - but even Shawn - with the patience of a saint - was at his wits end tonight.

Go MMR. I hope learning of Julia's situation will save at least a few kids from this fate.

It will all work out eventually - just have to keep on hanging on.

Susan

WHEW!

The Medicaid meeting went well, I think. Julia was there the whole time and showing her "true colors" (on a bad day)which I think gave the medicaid person a real look into what goes on here in the evenings. We talked about a lot of stuff, and the medicaid rep is going to give me some contact info for someone to help advocate for an appropriate bed for Julia - so we can hopefully get rid of the "cage". She was very polite and patient even though Julia was tantruming for the whole hour. We will keep our fingers crossed. I mentioned the in home health care service saying that Julia was "close to normal" and she just kind of shook her head and said she would talk to them about the situation. I asked her to talk to them nicely about it, as I am likely going to have to hire at least one, if not two more care providers in the near future and the home health care service has to approve it. I don't want a bad taste in their mouths when I call for the interviews with the people I find. I will give it a week or so before I call for the interviews. But, all in all, it went really well. Thank you GOD!

Susan

medicaid

Julia has her evaluation with medicaid tomorrow morning. Those who know, know how stressful this can be, as, because she can walk, they see her as "normal". Forget the inability to talk, for get the inability to affectively use her left hand, forget the hemiplegia and braces, forget the lack of using utensils to eat, forget the inability to bathe herself or get dressed without being placed on a baby table, forget the 10 second attention span, forget the diapers at almost five years old, forget no "stranger danger"......that's all normal, right?

God has been looking out for me lately (a lot) and I am hoping he will have time tomorrow morning to do the same.

Julia is doing great. Has a great weekend with grandma and grandpa and got to ride a "real" big horse....little did these people know she has been riding for over two years now! haha! NOW THERE, she may be ahead of the curve! Don't tell medicaid!

Good day, good night, and prayers for tomorrow!

Susan

Ophthamology appointment

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

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

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

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

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!

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!

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

Found on Yahoo Encephagroup....Conversation between brain and body....

Hello, I'm glad to see that you are awake! This is your brain talking. I had to find some way to communicate with you. I feel like I barely survived WW3 and am still not quite all in one piece. That's why I need you. I need you to take care of me.
?
As time passes and you and I feel better and better, people, even doctors, will tell you that we are fine: "It's time to get on with life." ?That sounds good to me and probably even better to you. But before you go rushing back out into that big wide world, I need you to listen to me; really listen. Don't shut me out. When I'm getting into trouble I'll need your help more than I ever have before.
?
I know that you want to believe that we are going to be the same. I'll do my best to make that happen. The problem is that too many people in our situation get impatient and try to rush the healing process; or when their brains can't fully recover they deny it and, instead of adapting, they force their brains to function in ways they are no longer able too. Some people even push their brains until they seize, and worse. I'm scared. I'm afraid that you will do that to me.
?
How can I tell you how much I need you now? I need you to accept me as I am today...not for what I used to be, or what I might be in the future. So many people are so busy looking at what their brains used to do, as if past accomplishments were a magical yardstick to measure present success or failures, that they fail to see how far their brains have come. It's as if there is shame, or guilt, in being injured. Silly, huh?
?
Please don't be embarrassed or feel guilt, or shame, because of me. We are okay. We have made it this far. If you work with me we can make it even further. I can't say how far. I won't make any false promises. I can only promise you this: that I will do my best. What I need you to do is this: because neither of us knows how badly I've been hurt (things are still a little foggy for me), or how much I will recover, or how quickly, please go s-l-o-w-l-y when you start back trying to resume your life. If I give you a headache, or make you sick to your stomach, or make you unusually irritable, or confused, or disoriented, or afraid, or make you feel that you are overdoing it, I'm trying to get your attention in the only way I can. Stop and listen to me.
?
I get exhausted easily since being hurt, and cannot succeed when overworked. I want to succeed as much as you do. I want to be as well as I can be, but I need to do it at a different pace than I could before I got hurt. Help me to help us by paying attention and heeding the messages I send to you. I will do my part to do my very best to get us back on our feet. I am a little worried though that if I am not exactly the same you will reject me and may even want to kill us. Other people have wanted to kill their brains, and some people have succeeded. I don't want to die, and I don't want you to die. I want us to live, and breath and be, even if being is not the same as it was.
?
Different may be better. It may be harder too, but I don't want you to give up. Don't give up on me. Don't give up on yourself. Our time here isn't through yet. There are things that I want to do and I want to try, even if trying has to be done in a different way. It isn't easy. I have to work very hard, much harder, and I know that you do too. I see people scoff, and misunderstand. I don't care. What I do care about is that you understand how hard I am working and how much I want to be as good as I can be, but I need you to take good care of us, as well as you can do that.
?
Don't be ashamed of me. We are alive. We are still here. I want the chance to try to show you what we are made of. I want to show you the things that are really important in life. We have been given another chance to be better, to learn what is really important. When it is finally time for our final exit I would like to look back and feel good about what we made of us and out of everything that made up our life, including this injury. I cannot do it without you. I cannot do it if you hate me for the way being injured has affected me and our life together. Please try not to be bitter in grief. That would crush me. Please don't reject me. There is little I can do without you, without your determination to not give up. Take good care of us and of yourself. I need you very much, especially now.
?
Love,

Your Wounded Brain

OT yesterday.....fun times ahead!

So, Julia got to see Kevin yesterday, her favorite OT. We worked on her taking off her shirt and getting it back on "by herself". Once you help her with one arm, she can generally do it - but it takes her about 5 minutes and there lots of crying and frustration involved. Kevin is really happy with Julia's progress with more "planning" rather than random spreading of toys and little organization of her thoughts like she had a year ago. She's not perfect, by any means, but he said he can see her really "trying" to take things a step at a time. Her left hand and arm are still causing her difficulty. I mentioned that Dr Gallagher mentioned "restraint therapy", which we tried last year with a removable cast for her right hand, which was supposed to force her to use her left hand.....and it did - it forced her to use her hand to remove the removable cast.....SO.....

We talked about casting Julia's right hand and arm with a REAL nonremovable cast. The cast would stay on for about three weeks at a time and we would work on OT stuff pretty intensely for that period of time - two sessions a week. (Here is where I need a body double, or not to work full time). He said it will be extremely frustrating for Julia which means for us at home as well - as the crying will be pretty constant....BUT that he has seen some amazing results when this is done. So, he is going to talk to Juliette, her PT, and decide when we should do this....right now, the botox that was done on Julia's leg should be kicking in pretty good - so we should probably concentrate on PT for now, and then move on to the cast and OT later. Kevin is so awesome with Julia. He looked at me and said she is one of his favorite patients, because she is always so happy to be there (most of the kids are not), and that she makes him smile and remember why he went into this field. He said regardless of how far she comes, she is happy, and he said that says a lot about her life at home and outside the clinic. He said thank you for keeping her happy and not "working her to death" like many parents sometimes do - that we seem to have a real good balance with working with her and letting her be.....letting her be a kid, and letting her be herself, regardless of her diagnosis. Kevin is so awesome.


Will keep you all posted on her next steps - hopefully her new brace for her leg will be in next week.
Susan

HOW EXCITING!

Julia got accepted by the Littlest Heroes Project to get some professional pictures taken of her free of charge! The volunteer professional photographer emailed me this morning and we are going to try to set something up at Saddle Up - Julia's favorite place to go, and get some good pics with her and the horses. HOW EXCITING! I used to take the kids every year for pictures, but with time and finances now limited, I don't do it anymore....I am SO EXCITED FOR HER!! I'm hoping she will let me do something with her hair so its not in her pretty face for the pics. Will post the pics when I get them (with photographer's permission.....). THANK YOU LITTLEST HEROES PROJECT!

article on encephalitis......copy and paste....

http://www.cbc.ca/canada/story/2010/04/01/f-encephalitis-research-nervous-system.html

New Pediatrician

Well, i found the ped of my dreams (i think)............i took jack in for his 7 yr check up. Jack is fine - other than some problems with peeing in his pants still - which the dr thinks may be stress induced as they only occur about 3 times a year for about a week.....i thought it was odd that he was only in the 38% in height since his dad is so tall, but he said not to worry. If he doesn't start "sprouting" in height, we will look into it, but he wasn't concerned. He found some issues with his knees, but nothing to worry too much about for now. Likely an inhereted issue that we can't do much about and it isn't bothering him for now. He was able to remove the tube in Jack's ear that has been lingering for 5 years - the last ped wanted me to go to a specialist to get it removed - he got it out in two minutes. Jack (and the new doc) passed his exam with flying colors.

I then mentioned Julia to him, as I have not been that impressed with her former ped. He agreed with the vaccine as the cause of her encephalitis and told me his special interest was developmental delays and wanted her records right away! He attends classes on delays, he is familiar with brain injuries, AND he is familiar with coding, etc, for things with medicaid.

When we left, I got a call on my cell from him, which I missed because i couldn't find my phone, and he said he was leaving the office but wanted me to call him back on HIS CELL PHONE and gave me his number, regarding jack and some meds that might help with his peeing in his pants way to often.

Anyway, very excited about a ped who cares and gets it. He said, "i can understand, to the best ability that I can, what you are going through with julia, but you are the one living it, and i hope i can help you out."

What a great doc! Hard to find these days!

Susan

Another appointment under our belt!

This afternoon we had yet another refitting for Julia's brace for her left leg.......I think this will be her 7th brace or so since the vaccine injury three years ago....

Anyway, after getting out of work late (really??? how unusual....) I was able to get to the appt early! Julia was a TROOPER this time! Its the first time she actually just sat through the whole casting (well, on my lap) without moving and crying, etc.... She was casted and measured and the new brace should be in within the next three weeks! Good news, it will be a "short" brace, as opposed to the one that went up to her knee that she has had for the last year or so....AND.......NORMAL shoes will (should) fit over it! WOO HOO! Maybe my baby can become a shoe fanatic like her mom! Hopefully shoe shopping will be more fun this time! I would really LOVE for her to be able to wear sandles now and then, especially with summer coming.....

Anyway, I'm real happy with how the appt went.....NO TEARS or accidental cuts on her skin like last time!

susan

Success!

Botox and valium at four years old - who would of thunk it....

Everything went fine today - other than I overslept and had 15 minutes to drive to aurora in rush hour! Thankfully, there was little traffice and I was only 15 minutes late....also thankfully, my mother made it on time and let them know I was running behind so they wouldn't cancel her appointment!

The general anesthesia only took about 7 minutes total, and she was up and moving like herself within 45 mintues.....she's a little crankier than normal today, but all in all, pretty much herself!

Now, just the three week wait to see what response we get! I hope it helps some! (A lot). But the doc said not to get too excited too soon - she used very low doses today and it may need to be redone with higher doses depending on how she responds......

Anyway, all in all it went well. Hoping for an early bath and bedtime for all. Stressful day, but all went great!

Susan

Big Day Tomorrow

Well, my mind definately has not been on work today, though I will have been here for 9 hours today. My mind is on tomorrow.

Tomorrow Julia is going in for her Botox injections. How lucky that hers are covered under insurance! Mine aren't!! :) Anyway, just trying to make light of the situation.

Julia is not allowed any food after 10pm tonight, and no liquids after 630am tomorrow. She has to be at the hospital in Aurora at 745am....and her procedure isn't until 945am. Considering we usually appease her crying with snacks and juice, it will be a very loud morning...bring the Ipod! :) Shawn is going to bring his phone so she can watch Dora videos, and hopefully she will stay relatively entertained until anesthesia time.

They are hoping to accomplish anesthesia with just a face mask - but with Julia's sensory issues with things on her face - i do not know how that will go. I KNOW she will have to be held down, arms tied down, legs tied down, to try to accomplish this. If they can't do it this way, she will have to get an IV and be induced. I'm not looking forward to any of it, but luckily she has no idea what is in store for tomorrow.....Well, we will get through it baby girl...mom is always here for you, and Grandma and Shawn will be there tomorrow too. It will be ok. The whole procedure takes maybe 10 minutes - i'm not worried about that part - just the "getting her down" part......

So, say an extra prayer for Julia tonight and tomorrow - mostly that she won't be scared and that she won't have any adverse events during anesthesia, and also that the Botox shots will help her leg!!!!

Susan

Stolen from Suzy's Blog.....how i feel many days.....all us mom's feel this way from time to time......Entitiled "conversation with self"...So glad I have friends who understand, as most never will....

“I want to run away,” I said to Myself.

“Really?” asked Myself to me. “Where do you want to go?”

I answered, “Somewhere. Anywhere. Just as long as it’s far, far away.”

Myself asked, “Why?”

I answered, “Because I’m tired. Physically and mentally. I’m drained.
I want a break from everything. I’m sick of fighting for Suzy to get better. I’m exhausted from worrying about her. I’m tired of therapy and treatments. I’m tired of working my a$$ off. I’m tired of ……suzy.”

Myself said, “That’s a terrible thing to say.”

I said, “I know, and I’m not proud. But sometimes that’s how I feel.”

Myself said, “Well….. you’re entitled to your feelings.”

I said, “I just don’t understand. I thought that if you want something really badly, and you worked very hard, and you were committed and patient, and ‘never gave up’, and ‘stuck with it’, and prayed faithfully to the almighty God..… I thought that you would eventually get it. I thought that was how life was supposed to work. I believed in that theory. I really wanted Suzy to recover, and I have killed myself trying. So - how come it’s not coming true?”

“But she HAS gotten better. She is so much better than when she first woke up from the coma,” Myself said.

“Yes, I agree. But when I look at her I can’t help but see that she is 3 years old; but she has the mind and motor skills of a 6 month old.”

Myself said, “True, but upon waking 2 years ago she was a 0 month old. So, in 2 years she has grown and developed 6 months! That’s a wonderful achievement!”

“Sure, it’s a great achievement for a brain injured child. But, it totally sucks in the real world. She still can’t DO anything! She’s bored and she’s frustrated. She’s cognitive enough to KNOW that she can’t do anything. We’ve tried so many therapies and interventions, and nothing seems to make any significant improvements. Is she not capable of getting much better? Is her brain so damaged that this is the way she will live the rest of her life? Some things have helped a little bit. But I want MORE! I want her future to be rich with possibilities. I want her to be able to entertain herself. I don’t want to entertain her forever. Couldn’t she at LEAST learn to COLOR, for God’s sake?

Myself said, “You sound like you’re not happy with Suzy.”

And I answered, “I am SO happy with her. I wouldn’t trade Suzy for THE WORLD!! I love her more than life itself. But, I would trade in every one of her disabilities.
I am angry at what her brain has done to her. I am angry that her body doesn’t work the way it’s supposed to. I look into her eyes, and I feel that she is hurting. She wants MORE from her brain and her body. She wants me to help her………I am trying so hard......but I just haven’t been able to fix her…..My heart brakes for her and I am disappointed in myself. Mommy is supposed to kiss the boo-boo and make everything ‘all better.’ But this boo-boo is beyond me. I can kiss her, and love her, and keep her healthy and happy. But I am starting to realize that I will NEVER be able to make her 'all better.' And this makes me very sad.

Appointments, appointments, and more appointments!

So, Julia got her hip X ray done yesterday while at OT and SLT. The tech could not read it, but forwarded it on to Dr Gallagher, so hopefully I will hear back soon - with hopefully good news. I am NOT excited about surgery on Julia's leg.....praying it won't go this route.

The Botox under anesthesia is scheduled for next Thursday morning. They will be doing two to three injections to see if they can loosen up the tight muscles in her leg - and then we will do some pretty intensive PT while the shots are working (about three months) to try to correct her leg and foot position. If this fails.....surgery.

We have an appt friday april 8th for a refitting of her brace for her left foot. The Dr recommended a low brace - just to the ankle, rather than the tall one she has been using. Hope we don't have to go through the 100 pairs of shoes ordeal to try to find one to fit over the brace! That is not real fun. I always pictured Julia and I shoe shopping together, but it turns into a nightmare.....crying, fussing, frustrated - BOTH of us! Haha.

I got a call back from the scheduler for the neuro-psychology department at Children's Rehab. The Dr is out of town until next week, and there is usually a two to three week waiting period to get an appt - so that will be a while. The appt is a 12 hour evaluation. After explaining Julia's situation, the scheduler said we would probably break it into two days for everyone's sanity. So, that's two more "vacation" days I will have to take off from work.

Julia also has a neurology follow up on May 25th. Just a recheck. We may discuss medications to help with attention span, but Dr Gallagher said with brain injuries like Julia's, they don't always work, and may make her more prone to seizures. If this is the case, then, we will not go this route. It was just my thought that if she could concentrate on something for more than 30 seconds, she may be able to learn better. We will see what Dr Parsons thinks in May. We discussed it back in November,and she said that before we considered that, that we try her at the special needs school that I have enrolled her in - she has been there 6 months now, and is somewhat better, but definately not as focused as we all hoped she would get.

I spoke with my boss about all of these appts and evaluations that have been occurring lately - as i have had to take many days "off" for these things. I asked him to let me know if my job was in jeopardy - as all of my "personal" issues are definately affecting my ability to work.....he said I was fine....not to worry about that......and that if it got to that point he would let me know well ahead of time. I am starting to realize why so many mom's of special needs kids do not work full time, or work at all - so many things to do and only so many hours in a day. I hope that someday I am able to go to part time work, but don't see that happening anytime soon. Just trying to schedule all these things on my days off, or just trying to take 1/2 days off to accomplish all this stuff. It is exhausting, but hopefully will be rewarding one day. I love that baby girl.

Susan

So, Jack is sitting here learning how to use Julia's Talker! That is great! He is so smart, he will be able to help her use it once he catches on, which will be in about an hour....he is so great with her! he said he was very excited about the talker because he wanted to use it so he doesn't have to talk anymore.....i think if this is the case - that computer voice might drive me mental and the 8Kish device would be thrown out into the snow! haha! totally kidding......

We had an appt with our new physiatrist today - susan gallagher at childrens.....we are going to schedule some botox injections in her leg (two or three spots) to see what kind of response we get - under general anesthesia (well - gas mask if possible)......probably in the next couple of weeks. It is supposed to loosen up her tight muscles which are causing an internal rotation of her leg which may lead to necessary surgical correction of her hip and tibia (knee). Going the botox route first before major surgery is considered. Hip x ray is ordered....just have to schedule it. She is also going to be evaluated by neuro-psych for behavioral issues and learning ability assessment...will let you know when I get her in there. She also has to get refitted for a new brace soon. Will let you all know how all that goes.

Thanks for your continued support........this is tough stuff.....but i had a real nice conversation with two of my co-workers today (can you believe there are THREE of us with brain injured children in the same vet hospital?? amazing....people are brought together for a reason)....I don't feel so alone in some of the feelings i have - as these two other mom's shared many of my sorrows and sentiments....thank you to Shana and Laticia......you guys have done this longer than me - especially, you, Laticia - 21 years....wow....and still sane! :) And, Shana - I think you get where I am coming from. We LOVE those kids.

susan

A new beginning...

This post is from Shawn...
So, we have now settled in the new home. It has been a very long, challenging and interesting journey - and not just the house moving! But as tough and furstrating as it can be and has been, it is equally rewarding. We are still busy unpacking and wrapping up things at me and Susans' previous residences, but we are finally making a home for our family. I want to thank everyone who helped make this happen; it was very hard. But I really want to say thank you to Susan, Jack, and Julia. They have taught me more about patience, strength, and love in 2 years than I think I learned in my previous 36. I feel truly blessed and as though my life has such an amazing purpose and path. Julia's progress over the last 2 years has convinced me that there are miracles and that the Lord does indeed work in mysterious ways. Love and God Bless, Shawn

BIG DAY TODAY!

Please pray for my family today - its a big day.

Today at 10am, I am going to court against my former landlord who owes me close to $10K for not returning my deposit when I moved out of Parker almost two years ago. I have learned of many bad things this person has done to others in the last week or so, and really hope my contempt of court charge goes through today - not only for what he has done to me and my family, but also for what he has done to those in Arizona and to the 75 creditors listed in his bankruptcy papers that I just received a week ago - though he did not list me as a creditor. We will see. I may have no recourse because of the bankruptcy, but at least today I will know if this is OVER - i have been fighting this since Jan 2, 2009.

THEN, much more importantly, the Life Care Planners from the government are coming out today. We have a lot of talking to do. They are meeting us here at the house at 2pm-4pm, then we are all going to meet with Julia's Physical Therapist at 5pm. Then tomorrow, we are all going to Julia's special needs preschool so they can observe her interactions and abilities. Afterwards, we will meet with Julia's Augmentative Communication therapist. Lots to discuss there as well. After the visit, Julia's Life Care Planner, Roberta will go back and forth with the governments Life Care Planner, and they will come to some agreement on Julia's future needs and funds for these needs. This is it - folks. What I have been fighting for and preparing for for three years now. Today.

After the visit with the government is over, its time to MOVE! We are moving into a new rental house (with a possible lease purchase - depending on what happens to my credit with the whole foreclosure vs short sale thing on the house is Florida). We can start moving the big stuff tomorrow and should be in the new home by Sunday night. Lots to do! The house was picked out primarily for Julia and her needs. It has a large study area downstairs that is going to be turned into her "therapy room" where we can put all her equipment she should get from the settlement and set it up so that she can do her therapy at home, rather than having me and others drive her here and there weekly for hours of treatments. Jack is very excited about his new room - the colors - well, lets just say it is a "boys room" and HE loves it! I do feel bad for him, though, as he will have to change schools again once second grade comes around. Mercifuly he is a very resiliant child and will adjust quickly I am sure.

Well, time to get my documents together for court, then get the kids to the sitters, then meet with the Life Care Planners. Wish us luck and blessings. Never thought this is where my life would end up - but it is what it is and I am lucky to have as much as I do - especially the support of most of my family and friends.

GO JULIA! Today - its all about YOU!

LOVE YOU GIRL!

mom

Scary Talk

Today I spoke with Julia's PT and SLT about the attorneys' visit and the "opposing" life care planner that is coming out. I explained how the whole process works to the best of my knowledge. Julia's PT is thrilled with a lot of the stuff she has been doing lately, but today she did mention some of the things that might come up in the future. She metioned that as Julia grows, it is a real possibility that she will need hip surgery, especially if we cannot correct her gate with her braces. She mentioned she might need Botox injections in her ankle if we can't get it positioned correctly with the brace. She mentioned a couple of different surgical techniques that might have to happen in the future. She mentioned a lot of things she is going to talk to the attorneys and life care planner about and I think just wanted to give me a forewarning so I don't "freak out" while they are talking. I wouldn't have publicly "freaked", as I have heard these things before - but not for a long time - so I guess it kinda hurts to know these surgeries, etc, are a real possibility in the future. I just don't want my baby to hurt.

I then spoke with the SLT - language therapist - who is working on the talker with her. She explained to me what she would be saying to the life care planner - and said that, honestly, we DON'T KNOW if Julia will ever speak on her own. She is going to talk to the attorneys about upgrades that will likely be necessary in the future for her talking machines, computers, etc. The good news is that her therapist REALLY thinks Julia is smart. So, other than the nonverbal issue and lack of attention span - it is possible that she could somehow become a "productive" member of society some day. That is good - especially with our friend (haha) Obama in office - especially considering her settlement is in the governments hands...frightening..... I hope she can work somewhere someday doing anything that makes her happy. A doctor, a lawyer - probably not (but maybe!), but even just a job at Walmart or Target stocking shelves....if she enjoys it and is able to earn a "living" for herself I think would really help her self esteem as she gets older. I hope so I hope so!!!!!!!!!

Anyway, enough rambling.....

Julia's favorite thing at therapy today was "What Up" and she throws her head back.

Susan