EMMALIN'S 2ND EYE SURGERY

Just getting to the Same Day Surgery Floor!

Emmalin and Daddy

Emmalin had her second eye surgery (in both of her eyes)to try to correct her strabismus on February 3rd.  It took place on the "same day surgery" floor at the St. Louis Children's Hospital.  Emmalin did have this surgery in January of 2010, but the brain did not "accept" the corrections that were made to it, and this is why she had to get it done again.  Emmalin did very well and had a very speedy recovery!  We are SO glad that it is over and we are hoping for better results this time! 

Showing off her new outfit

                                           
                   


All done and ready to go HOME!!







EMMALIN AND HER EARRINGS!

Emmalin's cousin Hallie came over the other day and she had her first pair of clip-on earrings.  Hallie was so proud of them.  We ended up trying them on Emmalin and I just wanted to post this picture because I thought it was cute!

National Rare Disease Day - CDKL5

Today, Feburary 28th, is National Rare Disease Day.  One of the mothers that is in my CDKL5 support group put together a little video to represent CDKL5.  I think she did an amazing job and Emmalin is in it and so I wanted to share it, but couldn't figure out how to get it off of facebook.  So, until I can figure that out, you can go to my facebook page to see the video.  I'm sorry about this.  I'm going to have to work on getting better with all of this technical stuff!! 

Oh well... Happy National Rare Disease Day!!

ABM - Day #3

Emmalin and Chad Estes (ABM therapiest)



Kristi, Luke, Em, and Me on the last day of ABM

 Everything went really well today.  I am trying to upload some video of the past 3 days, but am having a really hard time getting it on here (sorry)!  Anyway...we are very excited about what progress Emmalin was able to make these past 3 days.  We are going to go back the end of March to try another series of lessons (that's what they call each hour and we go a total of 6 hours - 2 a day - for 3 days).  I can't wait to see what she will start doing next!!  God is Good!!

Working Hard!!

1ST ABM SESSION - Days #1 and #2



Ready for ABM (day #2) and look at that head control!!!

 On February 14th around 6:45pm, I got a call from Chad Estes saying that he had an opening for Emmalin to do ABM on February 16th, 17th, and 18th.  I talked it over with Jarrad and the next day, we were headed to St. Charles.  In this session of ABM we would be doing 2 separate hours of therapy a day for a total of 3 days.  Some of our friends (Kristi and Luke) were also going to be doing therapy with their son on the same days with Chad, so it was going to be nice to know someone up there!  Plus, my mom was able to go with me and Em because Jarrad wasn't able to get off work.  So between Kristi, Luke, and my mom, we were in good company!!  To be honest, I didn't know completely what to expect.  I think Kristi described it very well when she said:

"It's a very different sort of therapy. Chad (our therapist) is just moving Luke around on the table...manipulating him into different positions, etc. All very gentle.....lots of stretching, pulling, twisting...etc."



Emmalin and Chad



And that's exactly what he did with Emmalin.  He focused the first day on the lefts side (because it's weaker in general), and transitioning from laying down to sitting up.  By that night, as strange as it sounds, Emmalin was stronger in her legs and putting her hands down when she would lean to the side while sitting up (which she would rarely do before).  By the next morning, which was this morning, Emmalin's head control was WAY better and she seemed to be doing better at sitting up also.  I was and still am blown away by her progress that she has made!!  I honestly can't believe that she made so much progression and  in SO many areas!  IT'S AMAZING!!!

Today was the second day and of ABM and Emmalin tolerated it very well (just like yesterday).  She was really tired today after the second session.  Also like the first day, she had seizures before (and during today too) her second session.  This is normal for Emmalin right now (having seizures around that time of day right now).  But even after the seizures, when she was weak and tired (and even when she was sleeping), Chad was able to continue and Emmalin tolerated it very well because it is all so gentle!!  As for progress made today, Emmalin slept a lot after her 2nd therapy session, so I didn't get to see very much of Em moving around before it was time to go to bed.  I will have to wait and see tomorrow :)

My friend Kristi was the one that found this and I am so grateful that she did!  THANK YOU KRISTI!!!  This is something that we are going to be trying again next month (but I don't know when yet). 

I feel like I need to point out that there is no two people that will react to this therapy exactly the same way.  So everyone sees progress at different times and at different levels.  We are just so incredibly grateful for the progress that Em has made and pray that it will continue! 

God is So Good!

Oh... I will post some video of this once we get home and Jarrad can show me how to do it!!

ANTA BANIEL METHOD (ABM) THERAPY

Anta Baniel Method (ABM) therapy is a type of intensive therapy that we have been looking at for Emmalin. It is a type of therapy that is very hard to explain. This is a quote from the Anat Baniel Method link below explaining what ABM is all about:
The ANAT BANIEL METHODSM (ABM) helps people of all ages overcome pain and limitation and achieve lifetime fitness and vitality – physical, mental, emotional and spiritual. The method accesses the remarkable capacity of the human brain to form new connections and new patterns and reach levels of performance never achieved before.

We have been looking at a specific place in St. Charles, MO to do this therapy. It would be through a man named Chad Estes, an ABM therapist, and I have posted his direct link below (Evolution Through Movement).  This is a therapy that they suggest that you do once a month, if you live out of town and once a week if you can find it locally.  I have talked with Chad through e-mail and we are hoping that we will be able to come up there soon to have our first session. I will keep you posted!!


http://www.evolutionthroughmovement.com/ - Chad Estes's Website
http://www.anatbanielmethod.com/help-children-overview.htm - Anat Baniel's Website

OVER ALL UPDATE (SORRY IT'S BEEN SO LONG)

Hello everyone, I am so sorry that it has taken me so long to update our blog.  Since my last post, there have been several exciting things that have been happening.  First of all, I need to say thank you from the bottom of my heart to everyone who has donated money, time, and anything else to help us in any way!!!  You will never know how much we appreciate your generosity and kindness!   Because of your generosity, Emmalin has had the opportunity to try some new therapies that are all still completely necessary, but (like I said earlier) because of lack of money, they were not possible until now (I call them her "extra-curricular therapies").  Since we have started some of the extra-curricular therapies, Emmalin has been making many improvements and they wouldn't have been possible without your help!  Some of Emmalin's extra-curricular therapies are hippotherapy (riding a horse), music therapy (working on different skills with live music), and water therapy.  Jarrad and I have also been looking into a couple different types of intensive therapies.  We have also used some of the money for some equipment and special needs toys.  I will post more information about each of the extra-curricular therapies separately at a different time (along with some pictures and possibly video of Em). 

On a different note, Emmalin is growing SO much!  Since her last check up at her pediatrician's office, she has grown 2 inches, which now makes her 35 inches.  She is getting to be such a big girl!  Emmalin is smiling more and even starting to laugh a little bit again (it's amazing).  She still has seizures everyday, but that's just part of her CDKL5 gene deficiency.  Emmalin's favorite color is still red and she has a new favorite toy that she is starting to hit with her hand every now and then (which is HUGE)!!!  I will try to get a picture of her with her toy and post it soon! 

As always, Emmalin is AMAZING and we feel SO blessed to be her parents! 


GOD IS SO GOOD!!