Help Emma's little friend get there therapy she needs!!!!!

One Emma's fellow Rett girls is in need of a helping hand.  Please help this little girl continue her therapies while her parents overcome some unforeseen circumstances!


Need a helping hand | Medical Expenses - YouCaring.com

Trama-tober and nasty November

Just when you think that you have things under control, that you have a handle on what is going on and the gears seem to be turning nicely once again the Rett monsters show up and throw a nice big fat wrench into the gears.

October has been a crazy ride, one I'd really like to get off of now, thank you very much!  It started out pretty good really, looking back form where I am now standing.  Yeah sure, I was sad and a little down hearted thinking about what has been taken from Emma over the last year, it was hard not to think about it with it being Rett Syndrome Awareness month.  I had messages and posts blowing up my Facebook page and email daily as an incessant reminder of all that had changed.  

On the 21st of October things got scary.  I got a call at work from my husband, the occupational therapist and the pediatrician within minutes of each other (you know this is not going to be good news) saying that Emma had suffered multiple seizures within an hour.  It felt like my heart literally fell out of my chest.  I think I only felt heartache that deeply painful on the day that she was diagnosed with Rett Syndrome. I raced out of work, scaring all of my students most likely and drove home like a bat outta hell calling the pediatrician and neurologist as I drove home (on my bluetooth through my car stereo of course :))  She was admitted to the hospital and they started IV Keppra and did an EEG to see what was going on, they told me it could take several weeks to get things under control so I took a leave of absence from work for a month so that I could be there for my baby girl. They happened several more times and they were scary but they seemed to be getting under control, however, ever since the seizures started her puking returned.  Great. 

Then another 48 hour EEG.   :(

The EEG almost put a wretch in Halloween but we found away around it!

By the end of the month it seemed that her seizures were getting better, almost gone really.  Then we were in the waiting area of a doctors office and she had about 6 seizures in an hour.  Horrendous.  Then we went in to see the doctor and he told me that if I do not get her weight up by like 5 lbs in the next 6 months she was going to have to get a feeding tub inserted. Seriously?   I know that it is probably irrational but it terrifies me.  I have no idea why but I am horrified at the thought of a feeding tube.  Everyone says that its no big deal but I find it unimaginable.  SO, needless to say 6 seizures and a g-tube discussion later I was a hot mess when I left.  2 days later I went to the orthopedic doctor and he told me that she had a 37 degree curve in her back and that she needed to be braced immediately and that we were basically trying to buy time until she matured enough and then we'd end up with back surgery to fuse her spine.  WTF!!  This was a bit more than I could take and I had a bit of a break down all the way home.  

Seriously little girl, is there no bullet you can doge from the Rett Monsters?

THEN Emma had a massive seizure that knocked her right out and earned her a ride in an ambulance.  She was out for almost 6 hours straight and was in he pediatric ICU for several days.  She was reviewed by cardiology, had another EEG and then an MRI. Super fun.

 NOW, her seizure are changing.  She was having more absence seizures where she was just kind of passing out, now she is contorting and getting all twisted up when she has them.  Not a very pleasant way to see your daughter.

Nasty November is also a time to remember what you are thankful for...

I am so thankful for my beautiful little girl and that I get to see her beautiful face and gorgeous smile everyday. 

I am thankful that I get to hold her and hug her and kiss her cheeks each day.  

I am thankful that she is mine and no one else's.  

I am thankful that she is coming back to me, I can see it in her eyes.

I am also thankful for my wonderfully supportive friends and family.

I am also thankful for this little devil!

October ....

I have been crying a lot the last few days. I have been crying about the enormity of the task that my tiny sweet girl faces, for what was robbed from her, from us as a family, the stress it has put on our family and the countless other ways Rett has touched us. I think that October will always be a hard month.  It is Rett Syndrome awareness month and the Facebook pages are blowing up with all things Rett making it impossible to just go about the  business of living without thinking about Rett Syndrome and all of the things that it takes away when it finally decides to show itself.

I realized yesterday that by the end of this month a year ago I would be video taping and emailing the neurologist about a "weird hand thing" that Emma started to do in the next week or so.  Ironically Rett Syndrome had started to make it's self known during Rett Syndrome awareness month.  I wouldn't hear the words Rett Syndrome for another 3 months and then I wouldn't be told that it applied to my sweet baby girl for another 3 months after that .... I keep thinking about it.  I wonder if I would have changed anything for Emma if I had requested the test sooner, if I had known.  I doubt it would have made a difference. I am tripping over Rett Syndrome every time I turn around this month and yet last year, though I am sure the same diligent awareness work was going on, I heard not a peep of it.  Strange how the world changes.

It has been quite a wild ride this last year.  I feel like at this time last year I started to lose my daughter and that I was forced to stand by and watch helplessly as she vanished with amazing speed before my very eyes.  I don't even have the pictures up from the twins 2nd birthday.  I never consciously decided not to put them up, they just never got put up. I hate to admit it but I think they were simply too painful to look at and unconsciously I didn't want to see them.  The little girl in those pictures is not my Emma.  The girl in those pictures is trapped in some far away place where no one can reach her.

For the past several months I have been watching Emma reemerge.  I can see so much of the little girl I knew before this nightmare all started and I am so happy to have her back again.  I hope that she will stay awhile....  I love her so very much.

I am so happy to see your smiles and your spunk again. I love you Emma...

Chillin' at the zoo

Having fun at the park

Laughing at her Twin brother jumping on the bed

Laughing at daddy

All smiles for her favorite man

Fundraiser number one, is done!

                                      

Well, I have survived my very first fundraiser.  I have to say that I had a great time at the fundraiser and it wast hear warning to see so many of my friends and co-workers come out in support of my baby girl and Rett Syndrome.  I think that everything looked great and that we had some pretty great silent auction items and raffle items.  Our friends were fantastic and all took jobs at the fundraiser to help out.

 


We had a pretty great turnout.  I raised enough money to pay the lawyers to write up Emma's special needs trust so that my family and I will have a place that we can leave her money for her care should something happen to us.  I also made enough money to donate to research which make me feel good, like I am doing something that will help her and all the other beautiful girls just like her.

         

Emma's Biggest Fans

 

I am looking forward to doing this again and I hope that I can raise even more for research.  We are so close to finding if not a cure as least something that will improve the quality of our girls lives.

I learned a lot this year, like make the minimum bid sign bigger .... not sure how people missed that in 16 font....

Most of all I learned how many people care about my little girl and are willing to come out on a rainy Chicago night to support her.  I was so touched by everyone that came, it meant so much to me!

EEG Número Dos

We are all still recovering from our second round of EEG. This one was better,and worse, than the last time in some ways.

It was not 48 hours long like last time,thank god. So Emma didn't have to walk around with all those wires glued to her head, we didn't have to plug her in to the infrared camera during meals, naps and bedtime and she didn't have to carry around a battery pack and recording device secured to her waist.

This time her EEG was only an hour, yay! But she had to be sleep deprived, wait, what! Boo! That sucked!! The saying "don't wake a sleeping baby" exists for a reason, they HATE it. 

She was mad when Manny & I yanked her from her peaceful slumber at 2am, but recovered fairly quickly and was slap happy until about 4am. At 4am she was finished with our shenanigans and wanted to go to sleep. We spent the next two hours passing her back and forth deploying various keep the baby awake methods while she cried and loudly expressed her displeasure with our behavior. 

We got her to the hospital and they quickly applied the electrodes and thankfully they turned off all the lights and she was allowed to go to sleep. I got a little upset sitting in the dark holding her tiny little hand as she slept, thinking about all the things she had to endure so far in her 2 years of life and how unfair it all is.

The hour passed pretty quickly and unfortunately for Emma they wanted to evaluate how her brain would react to strobe lights so she was awoken to obnoxiously bright flashing lights. Poor baby 😩 

After a few minutes it was over and she was unhooked and we went home. The sleep deprivation threw her off for the rest of the day. She threw up as we left and a few other times that day. She she is getting back on track now and we are praying that the results will come back this week free of seizures.

 

The journey home.

Today was day one in my voyage home, 840 miles with 2 year old twins all by myself.  I MUST be insane.

Emma barfed all over herself 3x before we made it an hour, needless to say I ran out of emergency outfits. Okay, no problem, I'll clean you up when we get to the lunch stop, AKA the busiest McDonalds on the planet. There were 3 bus loads of boys scouts at the place in addition to what appears to be half of the soldiers from the nearby army base. There was literally a line almost out the door of the McDonalds! Crazy. 

I have to say, that being on a restaurant filled to the brim with Boy Scouts and soldiers I had no problems getting my unwieldy double stroller around the place, what a helpful bunch! 

After cleaning Emma up and spending a lifetime in line we got our food and all was well, babies were eating, no one was covered in barf, no crying, no whining  ... Parental bliss... 

Then I hear "mommy look at me, hahaha" and I look over and see my son dump chocolate milk on his face, probably half the container! Covering himself and thinking he's the funniest person on earth.... devil.  Back to the bathroom for another hose down and wardrobe change!

The rest of the ride when well, Emma got a little cranky. Every time she started crying I gave her a fruit snack,

It was like a anti-crying magic candy..... or it gave her a sugar high.... either way she stopped crying and was in a great mood for the rest of the trip and tonight in the hotel. 

All in all I'd say it when pretty good, most people were concerned about me traveling alone and it being harder because of Emma's disability but I have to say that I think she did great, she's a wonderful little traveler. I'd say my twins were no different in terms of their traveling tolerance. 

 Tomorrow we start leg two of our journey.... 

Emma & Manny miss their grandpa already!!  Love ya dad!

You're lucky that I fear prison...

I have been on a wonderful 22 day long hiatus visiting my family in NY.  My great grandfather passed many years ago and I have not been to his home since his passing and hearing that it might be sold soon by my great aunt I wanted to visit a beloved place from my youth before it is gone.

There is a reason that no NO ONE really goes there anymore ..... my super psycho great aunt!

I knew she was crazy before we went there, she has always been a complete wack job.  Wack job might be putting it mildly....... Ummmm, can't think of a more suitable adjictive. Raging lunatic?... Nope, not strong enough, anyway ... she has never met my daughter before and she has no idea what Rett Syndrome is, an ignorance I can readily forgive as I did not know what it was six months ago either.

However, this nut all of a sudden started telling me what a burden she was going to be to me and how she is a life time, 24/7 job and that I better get an abortion if I get my self pregnant again because its gonna cost money ... Blah, blah, blah, blah.  Over and over and over again she went on and on for what felt like forever! It was crazy, SHE is crazy.  If she wasn't related and older than dirt I might have gone crazy myself and given a slap upside the head.  I doubt it would have done a bit of good since she is super crazy. What can ya do...

Life goes on....

Emma and the new friend she acquired this trip! 

Sibling Love!

My Summer Beauty!!

Yesterday was fun, we spent the evening in our backyard just hanging out.  Emma was walking and was able to step into and out of the pool!  My baby girl is getting so strong!  It makes me so happy to see her walking around. From what I have read she should not be able to.... I hope that she will never lose that ability.


We are headed back out there this morning for some more fun!  Hopefully Emma will cooperate, she doesn't really like bright sun light and when Emma is not happy EVERY ONE will know about!  Spunky little thing has no qualms letting you know!  Apple did not fall far from the tree :)

Watch out Minnesota, here we come!

SUPER EXCITED!!!!

Our insurance plan approved our request/referral to take Emmy to the Gillette Children's Specialty Hospital in Minnesota which is supposedly a regional leader in the care and treatment of Rett Syndrome.  I have to say that I am still pretty shocked that Chicago, the 3rd largest city in the United States doesn't have something like that!

There was some question as to whether or not our insurance would approve it because we have an HMO and they are not only out of network, but also out of state.  It was frustrating to be told that "no one questions the fact that it would be the best care but ....."  They were worried that he insurance would say no because they have neurologist at the hospital she goes to know, even though they haven't EVER treated a girl with Rett.   GIANT kudos to Emma pediatrician who wrote 3 letters of medical necessity to the insurance company to make this happen!!

Emmy playing in her sandbox. 

Necessity, the mother of invention ....

It seems that there are many things that my daughter needs that are either uber expensive or they do not exist at all.


For example her platform swing.  The they cost about $300 or more in the online stores that I have found which is crazy.  Yes, I could try and get one through Early Intervention but if I did that I would wait for ever.  Her annual was at the beginning of March and almost 4 months later we still do not have any of the stuff they wanted to get for her nor is there any indication if when these items will magically appear.


My dad and I build Emma her own platform swing in about 2 hours one evening for about $60 dollars using the directions that we found on line here:

http://lovingamiracle.blogspot.com/2012/03/how-do-you-make-platform-swing.html

Her therapist and I think it came out great!  We tweaked it a little bit and added carpet but otherwise her directions are great!

• Emma also needs a little assistance walking for balance, so I build the Indoor Emma track: 

I installed wooden dowels across walkways 

and doorways

I attached a play yard to the wall so she will not slip and has something to hold on to.

Now she can safely navigate her way through the house, yay Emma!

• I also decided that an Outdoor Emma track was needed so that she could walk around and join in the action outside.   It was super easy and cheap.  The pvc pipe was only $2 for 10 feet!

We used rope around parts of the yard where it was not practical to install fencing or railings.  

Now  she can navigate the whole outside area and inside of the house!

• One of Emma;s stereotypical hand movements is that she brings her right hand up and bites her wrist and forearm.  I was pretty sure that I would hop on Amazon and buy something to protect her skin but there was absolutely nothing to buy!

Emmy and big sister

So I decided to use foam toy building blocks.  The one that have a hole in them I just use a kitchen knife and cut the corners and what not off until I get a fairly round shape to it and then I have a bracelet that will protect her arm.  People ask me all the time where I got them, its crazy!

I also took apart the chewbeads that they make for mothers of teething babies and re-strung them on the dog-tag style chain and sized them to her wrist.  I had them on elastic at first but it rolled up her arm and wasn't useful, I was also afraid it would cut off her circulation.

Those are my creative projects, thus far ......