The Offer (for now) from LAUSD

Well......we had our evaluation with LAUSD last weekend. They knew we wanted E to continue services and not wait until Sept so they graciously rushed our IEP (Individual Education Plan) appointment to yesterday.
We sat there for over 2 hours while all the therapists read their reports (like many times before). They said how special Emmie is and how she does show great potential.
And then the offers.....(the lawyers in the advocacy group Adam went to through Regional Center told us NOT to sign the IEP offer right away as they usually try to give you the least possible to save money).
OPTION 1
Emmie qualifies for 2.5 hrs of services per day at the special needs preschool. Not individual therapy...she would be in a classroom of 12 other kids (at different special needs levels) and they would not be working with her one on one. The teachers in the class basically show the kids how to function in a school setting. She would have to keep her regular preschool full time and we would have to pick her up and drop her off at the other school for 2.5 hours everyday and then take her back to her regular preschool. WHAT? Are you nuts? Great if we had all the time in the world to not work and drive all over the city. OR we also have the option of E being transported by a city worker on a bus. I DON'T THINK SO. For a kid who likes stability and thrives on a schedule we don't feel like uprooting her everyday to be with a different driver, different teacher and different kids is a great option. Not going to work for us....
OPTION 2
We can have a therapist come into her regular school for 1 hour A MONTH and show the teachers what to do to help Emmie. This doesn't seem like a lot but if we're going to have to help E on our own this might be the best option. That way she can be comfortable with the same teacher and kids.
Adam and I are torn by what to do.
Physically she seems to consistently be a year behind (BUT SHES SUCH A SMART GIRL)...so do we keep her in a regular school but maybe a year back if the older kids pose a safety risk with being so much physically quicker and physical?
We're going to have to continue to work on therapy with Emmie at home and have  found a great website that has some of the things she used in therapy:
www.sensoryedge.com
A little annoying that the prices are so high as they know people need these things but whatever.
Thank goodness I have a crafty husband!! He's already been talking about the things he wants to build for E to practice on (balance beam...stairs...etc).
I found a Polymicrogyria Group on Facebook and there are local LA parents that want to get together. I'm really excited to meet other parents and share experiences. Polymicrogyria Group Facebook

 

Trying to get Emmie therapy after she's 3

Well....life has brought us back to sunny California. Emmie is thriving and we are so proud of her. We were able to get her 1 month of therapies through the Regional Center (5 separate appointments each week...which is interesting to juggle as a full time working family).
Occupational Therapy (OT): They help Emmie with her coordination and motor skills
Physical Therapy (PT): They help Emmie move the right way with ease and build muscle.
Speech Therapy: They work with Emmie on developing the right language skills. Helping her with her S and helping her to express herself by saying things like ' no biting', or 'no pushing'.
Floor Time: who knows....I think this was more for mommy and daddy to talk about the next steps and how to help Emmie deal with everything coming her way.
Once she turned three (a few weeks ago!! HAPPY BIRTHDAY!) she no longer qualifies for the same state services and gets turned over to the school system. What does that mean? Nobody seems to be able to give us a straight answer. We went for the first round of evaluations with the school district. Seems as though they don't care what the diagnosis is through Boston but that they need to determine for themselves. URG. I hope she can get the care she needs and not pushed aside because her condition doesn't 'FIT' one of their categories. She's such a fighter and trys her hardest at everything she does. Its so amazing to watch. She's an observer and watches to figure it out before she tackles something (kind of like mommy). She will try 10 times to get it. It does get frustrating for her and she bites her hand occasionally but we just have to encourage her as much as we can.
She's walking a bit better although still very 'toddler like' as the school evaluator put it.
She's not drooling as much anymore....only seems to be when she's anxious.
She's talking a lot more. 2-3 word sentences...but babbling a lot. She's gets her point across!
STILL Potty Training...Floor time therapist didn't think she was ready. She still wouldn't be able to manage by herself.....she'll figure it out soon!
We should hear back from the school district in a few weeks.....CROSS YOUR FINGERS.
Adam and I have been doing our best to keep her engaged and challenged everyday! Its exhausting but we're doing it! Thank goodness we're doing it together.
First day of Preschool Summer Program tomorrow.....excited for her. NERVOUS about her safety....Kids keep pushing her. I just want to run over and push them back.....

THANK YOU

Wow! Thank you everyone for all your love and support. Its comforting to know we have such a great support system.
An update coming soon....
Emmie is doing well and developing in leaps and bounds.

Love Corrie and Adam

Overwhelming Response

WOW. Thank you everyone so much for the overwhelming response. I wasn't expecting so many comments and support. Its nice to know Emmie is inspiring people already.

There have been a lot of people asking how they can help by raising money etc. As the comments were coming in suggesting it I was worried it would seem weird.

Since there seems to be so much interest in this cause and our story I am looking into ways we can put this to good and raise money for not only Emmies genetic testing but for the Walsh Labs research into these brain malformations. Eventually I'd love to help other families that can't afford the trip to Boston to meet with Doctors at the top of their field or the genetic testing that insurance does not cover.

Emmie is extremely lucky to be making such great progress and I know there are so many other families out there struggling in a much bigger way. All kids deserve the same chance at great care!

Ill keep you all posted....

The Beginning

I want to put our story out there so that I can create awareness for other parents who might be going through the same thing. There are not many resources out there.

Emmie was born in 2008 after a normal pregnancy and labor. She was very alert and social (and beautiful) right from birth. We were of course (as new parents) comparing her development to the online charts and books we had. At a few months old we started noticing that she was a little behind with rolling over..then sitting...

I had asked the pediatrician a few times about it and was told "don't worry mom all kids develop differently..she might just be a little lazy". I was made to feel like I was overreacting being a first time mom....part of me wondered if I was.. but I kept asking.

Emmie started crawling at 1 year and we were so proud. She was finally able to get around and look at things. A little frustrating as the other kids her age were walking but she didn't mind and still got right in there with them. We still kept trying to encourage her to walk and waiting.....just thinking she was a little behind.

We changed pediatricians when Emmie was 1.5 years old. Right off the bat he noticed that her gait was wide and that we should go get her evaluated with the Early Steps Program that was run by Easter Seals.

Of course at the evaluation she took her first step (yay!!!!).....but the evaluators said she could benefit from Physical Therapy as they thought she had Hypotonia (low muscle tone) and Special Instruction Therapy at home to help her (and us) figure out some sensory trouble Emmie had. Certain noises really bothered her as well as new textures, grass, sand...you name it.

Julie who was Emmie's Physical Therapist was great. She suggested Emmie have braces fit for her ankles to have more support and she continued to work on strengthening her muscles. She began to walk at her second birthday (YAY!!!!!). We were SOOOO relieved, happy and proud. She tried so hard to figure out this walking thing and she FINALLY DID IT!! She was now able to explore things she never could. We cried!!

Sylvia was Emmies Special Instruction therapist....shes an amazing help and a great ear. Probably not part of her job description but she was a great person for me to talk to. Sylvia worked with Emmie on her sensory issues. We tackled the grass and the sand!! You cant keep Emmie away from the sandbox now...she loves to dump it on her head. As much as I want to tell her no I'm just happy she's not afraid anymore.

The MRI and the Results

A little after her second birthday she had an ear infection and Julie and I were noticing that her balance was just not getting any better after months of walking. Emmie fell a lot and just couldn't catch her balance for more than 5 steps. I also noticed that E was having a hard time grabbing things (almost like her depth perception was off). She thought that E should go see and ENT as it might be an inner ear thing.

I talked to my pediatrician about it and after telling him about the balance and depth perception he didn't think the ENT was the right person. He sent me to a Neurologist. A Neurologist?!! Not what we were expecting but I guess its better to cover all bases. Not a big deal ...there couldn't be anything wrong. Right?

The Neurologist saw us right away and after telling him about the balance, low muscle tone and depth perception he suggested that Emmie have an MRI. We were a little shocked and scared. Sedating our little girl while they did the MRI freaked us out. But we didn't have another option and wanted to make sure everything was OK.

The MRI appointment came fast and I was very nervous. Its a horrible thing as a mother to put your child through something like this because they just don't understand whats happening. They look to us for protection from being hurt.

The doctors came in the room and tried to distract Emmie with toys while I filled out paper work. I started feeling like I was in a tunnel after reading all the Dr garble about the sleep medication possibly being harmful to Emmie. After the paper work was filled out my husband and I had to help hold Emmie down while they put the IV in. It was the worst thing I have had to do. She was screaming my name and looking and me wondering why. I fainted.

I felt like I failed her.....trying to be strong but couldn't. Its amazing that stress can shut your body down like that....I never knew. My poor husband now had to worry about the two of us.

Emmie is a fighter and it took double the medication before she was finally asleep. Brave girl!

When I was released from the ER feeling terrible and groggy...Emmie was finished with her MRI and outside playing in the grass with my husband like nothing had happened. She's my hero! Kids are so resilient.

It feels like it took us forever to get the results but they called to move our appointment to an earlier date. Hummm...maybe they're just being accommodating I thought. I hope...

We went in on a Monday morning and sat in the Neurologists office. He came out right away and said "Well...the results weren't good. Emmie has a brain condition called Pachygyria"

A BRAIN CONDITION?! Not something we were ever expecting to hear about our daughter. I went into a tunnel...trying to listen to the Dr's diagnosis and hold myself together.

He also mentioned that she had fluid on her brain and might need a brain shunt as well.

AND an old hemorrhage in her brain.  DOES THIS EVER END?

He told us that Pachygyria was rare and that he didn't know much about it. He advised us to go online and learn a little more. We had SOOO many questions. Did he really just tell us to go online to research?

Emotions

WHAT? Am I dreaming or is there really a Dr telling me right now that my perfect child has a brain condition, might need surgery and he didn't know what he future looked like?

My husband and could not believe this was really happening. Somehow we had convinced ourselves that Emmie was just behind from the low muscle tone and walking late. The Dr could not tell us what kind of life Emmie would now have. Would she eventually catch up to the other kids? Could she function at a normal school? Would she live with us forever? These are all questions we asked.....these are all questions he also did not have answers for.

We went into a state of shock at first I think. Very depressed....it was almost like we were mourning the future we felt our daughter was just robbed of.  All the dreams we had for her...will she ever be able to achieve them?

I thought it might be my fault..looking online it said that if its not a genetic malformation that it might be something that happened while I was pregnant. I was the most careful pregnant womanever...I DIDNT EVEN DRINK CAFFINE! HOW IS THIS POSSIBLE? Could it have been the few prenatal vitamins I skipped?

I know...crazy...but these are things that go through your head.

I was overwhelmed by the emails everyone was sending. Almost trying to fix it or send me in different directions with tips and links to different websites. I was OVERWHELMED. I had to stop answering my emails and I couldnt tell one more person about it over the phone. Everytime I would retell it I would relive it again.

We had a family trip planned for Thanksgiving right after we got the results and we wanted to go. It was amazing a to have family around at a time like this, but I think we were both hoping that no one would talk about it and that we could forget even if it was just for a minute.

All I could relive in my head over and over again was "well....the results aren't good"

The Next Step and Finding the Walsh Lab

As a mother I felt like I went into survival mode.....searching frantically online for any information. There was very little. Only some very general information that was actually quite scary. Seizures and shorter life expectancy. So many different variations of this condition that it was hard to tell where Emmie fit.

I did find a blog that said that if your child was diagnosed with Pachygyria...sometimes its a misdiagnosed and that you should contact the Walsh Lab at Boston Children's Hospital. I immediately contacted them after seeing that they are leaders in research for this disorder and seemed to know everything there is to know about Emmies condition.

They said that they would look at the disk to see if Emmie would qualify for their research study and also give us an informal second opinion.

I sent Emmie's MRI disks for them to review as fast as I could just before Thanksgiving!!

After bothering poor Brenda many times checking in (I was TRYING to be patient) to see what their conclusion was...she finally called me just before Christmas.

They thought Emmie had been misdiagnosed and they thought it was Polymicrogyria instead

Similar condition but Emmies brain has more folds as apposed to less folds with the previous diagnosis Pachygyria.

It was bitter sweet....They thought that Emmie would still get the seizures but that she DID NOT need the brain shunt surgery. They also thought that Emmie had a rare gene mutation called GPR56 that we should test her for.

I was trying to listen to everything Brenda said but I felt like I was in a dream. Trying to write everything down and not wanting to let her off the phone....I had SO many questions.

We decided to make an appointment to visit them in Boston so they could meet Emmie and we could get the answers we weren't getting from Emmies Neurologist in Florida.

It was the longest month EVER waiting for that appointment. A month of fighting insurance to try to get the meeting in Boston covered. With a lot of persistence from myself and Emmies pediatrician we FINALLY got the meeting covered two days before we left for Boston and only because the Dr's in FL didn't seem to know about the condition. It is doable....you need to be persistent!!! (now getting genetic testing covered...thats another story)

Our Trip To Boston

Finally it was here after months of going crazy with different outcomes in our head. Of course Emmie came down with strep throat and we had to push the flight a day but we made it! Monday was our appointment day and the coldest day on record in 6 years for Boston. My husband and I were in a twilight zone that morning....finally the day we were waiting for was here. Are we going to get bad news?
You want to try to be positive but we realized that if we prepared for the worst but hoped for the best it would be easier for us to cope if there was bad news.
When we walked in the doors at the Boston Children's Hospital we were amazed....it was like a small city. Lots for the kids to play with...and a HUGE fish tank.
We made our way up to the genetics department and only waited for a few minutes.
We met with 4 of the Dr's in the Walsh Labs Brain Development and Genetics Clinic and were AMAZED at how detailed they were. They explained everything to us and helped us understand.
They were also amazed by our little Emmie. Apparently from her MRI she really shouldn't be walking. BUT SHE IS!! GO EMMIE!
Her determination and our persistence is paying off!

Our questions were finally being answered:
-They said that she would most likely get the seizures in time but they can be controlled with medication.
-She didn't need the shunt put in.
-After seeing her they were delighted to see she was doing so well and said she should be able to function in a regular school with a little extra help.
-It was nothing I did while I was pregnant that would have caused this.
-They didn't think there was a hemorrhage...they thought it was part of the Polymicrogyria.
-We should continue with Emmie's therapy as whatever we're doing is working.

They had also mentioned again that they thought Emmie had a gene malformation called the GPR56 gene which sometimes goes along with Polymicrogyria. They advised that we have genetic testing done to confirm.
When Brenda had mentioned this on our results phone call in December I had gone through the painful process of trying to get insurance to cover this testing. Genetic testing is something that most insurance companies DON'T cover since they feel it is only a way for the parents to make reproductive decisions. REALLY? What if we didn't have the testing and had another child that was worse off than Emmie on their insurance policy?
Doesn't seem like a smart choice on the insurance companies part but THEY WOULDN'T COVER IT.   The testing was going to cost around $4000. We decided that we had to wait and save more money. Our decision on having another baby could wait.

The outcome of the gene test wouldn't effect Emmies immediate treatment until they made new discoveries through research.
If she has the GPR56 gene...there is a large possibility that my husband and I are both carriers of this rare gene. This would mean that if we decided to have more children that there is a 25% chance that our other children would also carry the gene.
Since Emmie is such a rare case and doing so well....they cant assure us that other children we would have with the GPR56 would also do as well as Emmie and could actually be much worse. OUR LITTLE MIRACLE! We love her so much!

The Walsh Lab sat with us for much longer than we thought they would be able to and answered ALL our questions (I had a list as long as my arm).
I've never met such an amazing group of people that made us feel so comfortable and put our minds at ease considering the situation we are now in.

Coming Back Home

After coming home we were almost in a twilight zone. We had finally gotten the answers we were looking for. Now what?

All we can do is give Emmie the best possible care and hope that she continues progressing.

Our problem seems to be that on the BattelleTest that some of these Early Step programs use to gage whether or not a child should get therapy from the State Emmie doesn't score low enough to qualify for services. But at the same time we are being told that she needs the therapy to continue so that she can keep up with the other kids as her brain condition makes it many times harder for her to learn certain things.

This is something we have to pay for? If I do the math at 5 sessions a week covering Physical Therapy, Occupational Therapy and Speech therapy that adds up REALLY fast and although we make an ok living this would really change our financial future.

The Early Steps programs only go until the child turn 3 anyway (most states have them). Once the child turns 3 they might possibly get therapy through the school system? (Once I get more information and figure this all out Ill let you know.)

As Emmie is getting more adventurous wanting to climb the playground equipment and do what the other kids her age are doing I get worried. She is so unstable and could be pushed over by your finger. Other kids don't know to watch....or be careful and Emmie is to shy to stand up for herself. She really has to think about her next step and where it should go and needs to take her time. The other kids just fly right past her.

She is trying so hard and really doing the best she can. She is so determined and will try again and again until she gets it. I hope this doesn't shake her confidence at all as she gets older. It'll be our job to make sure she stays the confident little girl she is today and protect her in anyway we can without being overbearing.