Hard Couple of Days With Seizures

This weekend has been great having my mom and sister here, but Emmalin has had a couple of REALLY tough (at least tough for us) seizure days (really afternoon/eveningish) the past couple of days.  I think she had around 6 or 7 "hard ones" within 11 hours yesterday and she had around 4 hard "ones" the day before that (right now, that is a lot for Emmalin).  And to top it all off, Emmalin started a "new" seizure type last night.  Unfortunately that happens with CDKL5 (new seizure types will just show up randomly).  I was hoping not to have to change any medications around until after the intensive was over, but I don't think that's possible now.  I will definitely be calling Dr. Weisenberg on Monday and figuring out what we need to increase next....sigh.  I HATE SEIZURES!!!

Week #2 - Complete

This week Emmalin did great!!  I definitely am seeing some progress in how strong she is getting in her head and trunk!  She still has a ways to go, but she is DEFINITELY getting stronger!!

                                                                         God is Good!!

Day #10 - Intensive Therapy

Today didn't go as well as yesterday (Thursday - Day #9 was, by far, the best day of this week).  She still worked REALLY hard!!!  And she definitely LOVES that bubble column with this specific switch (that I'm trying to find - it's rectangle and angled) that allows her to turn it on and off herself.  Even though you could tell that she was extremely tired, she still worked for about an hour at the bubble column and had some of her best for the day during that hour!!

Day #9 - Intensive Therapy

WOW!! What a great day!!  Emmalin did AMAZING today!!  It was the first time that she really never "zoned out".  She worked so hard and at the end of the session today, she got to play with a switch button that would make the bubbles turn on and off on one of the bubble columns.  I knew Emmalin liked the bubbled columns, but the switch took it to a completely different level!!  She worked so hard on her sitting up and watching her try to figure out how the bubbles were turning on (she figured out how to do it by the end) was SO cute!!!  Jarrad and I have to figure out a way to get Emmalin one of those (I actually found one in a Christmas tree for $400 + Tax - I know what part of the next benefit money will be going for)!!  I've never seen her work so hard on sitting!   She also played with it for about 30 mintues AFTER having a really hard seizure!!!  I have 2 videos in this post and you can definitely tell which one is after the seizure because she is so much more wobbly, but she still did it!!  It blew me away on how hard she worked and how long she worked after the seizure!  I know I've said it before, but she's my hero!!


Click Here to see a short video of Emmalin playing with the bubble colum by hitting a switch (before her seizure)

(the clicking sound is Emmalin pushing down on the switch)

God Is Good!!!

Day #8 - Intensive Therapy



We are finding that she does better when Em doesn't use her arms. 
And sometimes holding them out front really helps too!!

Sorry I'm a little late to post this.  Yesterday went great!  Emmalin had about an hour where she was kind of "out of it" and but did amazing at the beginning and end!!  She is definitely getting stronger everyday!!

                                                                  God is Good!!

Day # 7 - Intensive Therapy

Em holding the microfiber lights :)

Em holding her light tube and working hard!

Today was a great day!!  Emmalin worked really hard and lasted the entire 3 hours!!!  I'm SO proud of her!!  I can't wait to see how tomorrow holds :)



Day #6 - Intensive Therapy

So today wasn't that great of a day as far as therapy goes.  We had to start 45 minutes late because I couldn't get Emmalin awake and then you could just tell Emmalin was having an "off day". I hope tomorrow is better!!!



Working on some rotation



This was video taken on Day #4 of the Intensive Therapy

In this very short video, Emmalin is choosing to grab a toy on and off.  I know for most of you this won't seem like a very big deal, but for us it is HUGE!! Emmalin doesn't like to hold things in her hands and it really doesn't happen when she is having to work on other things (like holding her trunk and head up at the same time).
                     Click on this to watch Emmalin on day #4 of the intensive therapy!!

Sitting In The Basket Like A Big Girl!!!

Tonight my dad took us to Walmart before he headed back to Nixa.  And at one moment (it was seconds, but it still counts).  Emmalin actually held her self up in the seat at the top of the cart!!  I couldn't believe it!!  She has NEVER done that before!!  And honestly, it has always been a dream of mine (as silly as this sounds) to be able to get something off a shelf without having to hold on to Emmalin 24/7.  And tonight made me feel like this dream actually has a chance of coming true!!  This is after the first week of Emmalin's 3 week intensive!!        I'm still in awe!! 

                                                             God IS GOOD!!

Week #1 at the Kenny Rogers Children's Center

Click Here To Watch What Emmalin Learned To Do In Week #1 of Her Intensive Therapy

For those of you who have not been following our blog, my daughter Emmalin has just completed her first week of a three week intensive therapy at the Kenny Roger's Children's Center in Sikeston, MO.  Emmalin's goals for the intensive are to work on head and trunk control.  One of the things that Emmalin has been working on this week is to learn how to "come back up", once she has leaned too far forward in the sitting position.  All week, as Emmalin was learning to "come back up", she would immediately fall all the way back because she didn't know how to stop herself in the "middle".  Well, in the last hour of her 3 hour intensive today, Emmalin (while trying to "come back up") STOPPED IN THE MIDDLE!!!  So this is what is on the very short video.  I AM SO PROUD OF HER!!  She still has a LONG ways to go, but what a great way to end the week!!! 

God IS SO GOOD!

Emmalin working hard on the swing!!

Day #4 - Intensive Therapy



Doing some standing to get the body warm!




Em's working on her head control and holding something in her hands (which she doesn't do very often). 



Emmalin did wonderful again today!!  She worked so hard on her head control today and of course worked on sitting up a lot also.  She even held a couple of things for a little bit today!  I was (and still am) SO PROUD OF HER!!  She started getting tired the last 30 minutes of the session today, but I didn't blame her at all.  She worked SO hard today (just like the past 3 other days).  In her defense, our time was different today, and so I think the last hour was running a little close to nap time (and that didn't help much).  I AM SO PROUD OF HER!! (have I said that yet - lol).  She continues to blow me away by her stamina, strength, and willingness to keep working so hard!!  She's my hero!!

 

Working Hard!!









Day # 3 - Intensive Therapy



Em working at the sensory wall in her suit!



Em working hard on the ball to keep her balance.

Today was a little interesting.  But I guess I should back up and say that last night Emmalin was in bed at 8:00pm but didn't fall asleep until a little after midnight.  So needless to say, she was a little sleepy today.  If fact, she didn't wake up for the 8:30 session.  Thank goodness Brandy had time this morning and so we were able to re-start up the session at 10:00am.  Emmalin was still very tired, but worked hard.  Brandy said it was completely normal for someone doing an intensive to have a day or two each week that their body is just tired.  Emmalin only made it 2.5 hours today (we are supposed to go 3).  But in that 2.5 hours, she worked very hard!!  I am so proud of her!

Emmalin in her suit in the "Vision Room"

Change: 3,000 Hoof Beats at a Time - Current Issue - 417 Magazine

Change: 3,000 Hoof Beats at a Time - Current Issue - 417 Magazine

Emmalin is in the picture at the top of this article. It is about Hippotherapy at Dynamic Strides!! WE LOVE HIPPOTHERAPY AT DYNAMIC STRIDES!!

Oh... and this is in the December 2011 Issue of 417 Magazine!!!

Intensive Therapy - Day #2

Em working  on sitting up in the "Cage"



I have been so blown away by Emmalin these past 2 days!  Before we got here, I was so worried about Emmalin being awake when it was time to start the session and tolerating the entire 3 hours.  So far we are 2 for 2!  Each day she seems to be getting stronger and stronger and her endurance keeps getting better and better!  Our therapist is AMAZING and so is the facility!!  I feel so blessed that Emmalin has had the opportunity to come here and work with such a wonderful therapist!!!



Em even has the hat on!  - Day #2



Em standing the "Cage" - Day #2



Intensive Therapy at the Kenny Rogers Children's Center: Day #1

Emmalin in her "Rubber-Band Suit"

Today Emmalin started her intensive therapy at the Kenny Rogers Children's Center.  This is an intensive therapy that Emmalin is doing for 3 weeks (Monday-Friday) for 3 hours each day.  Today was her first day!  I have to tell you that I was REALLY nervous!!  Here lately we have been having issues with Emmalin sleeping until around 10am - even 11:30am (which is not typical).  I was worried that she wouldn't be awake to do the intensive, because I found out that she would be starting at 8:00am or 8:30 four out of the five days out of the week.  I also worried about Emmalin not being able to stay awake and/or have enough energy to last the entire 3 hours.  I have to tell you, she did great!! It was the first day in, I don't know how long, that Emmalin woke up at 8:00am!  I was SO relieved!!!  She also did pretty well on lasting the entire 3 hours.  In the 2nd hour she got sleepy, but then got a "second wind" and finished it out like a pro!!  Whew!!  I was SO proud of her!!!  She worked SO hard!!! 

Emmalin looking at the lights and working hard!

Day #1 down and 14 more to go!!  I am going to try to post some video at one point to show Emmalin in "action" (if I can figure out how to get it on here)!

God is Good!!





Owen's Photgraphy

Here are some pictures that Owen's Photgraphy took of Emmalin and our family!  This was a big deal for a lot of reasons, but the main one was because this was Emmalin's first time to have her picture taken by a professional photographer!  Kara is AMAZING!!  She was SO patient and GREAT to work with!!!  I would recommend her to ANYONE!!!  Click on OWEN'S PHOTOGRAPHY for more information of how to book your session with Kara!

Children’s Miracle Network Radiothon 2011

This Thursday the 6^th, Friday the 7^th (today), and Saturday the 8^th, Power 96.5 has been (and still is) hosting/doing a radiothon for the Children's Miracle Network. A couple of weeks ago, we were asked to come Friday, October 7^th (today) at 1:00pm to share Emmalin's story and to talk about how Children's Miracle Network has helped our family. Jarrad and I felt honored that we had been asked to share our story! But by the time today actually got here, I have to tell you that I had been having an EXTREAMLY crummy morning!!!! Actually, it has been pretty tough all the way around here lately with Emmalin (but that will be a different post).

After feeding therapy this morning, Em got a tummy ache and so I pulled in a gas station parking lot to try to comfort her (which took around 40 minutes). I didn't get her calmed down completely, but enough to feel ok about putting her back into her car seat so we could get home. Em finally fell asleep in the last 10 minutes of the car ride. We got home and my garage door opener wouldn't work and our keyless entry wouldn't work either. I asked my 70+ year old neighbor, Donna, if the power was out in the neighborhood and she said it wasn't. This wouldn't have been that big of a deal because I have a key to my front and back door, but what I don't have is a key to the front and back storm doors (which were locked). So my amazing neighbor Donna noticed that I still had not got in my house. She came over to ask what she could do, and in that moment Emmalin started puking (she was still in the car and in her car seat). Donna then went to get towels and I started stripping Emmalin down to get the puke off of her. Once we got all of that under control, I still couldn't get into my house. So then Donna and I started trying to pry my front storm door open with a screw driver. Thanks to Donna, we finally got it. I then grabbed Em, which was asleep and ran inside to change her diaper, clothes, and make/give her the "noonish" medications that she needed. We then had to dash back out to the car to get to the radio interview on time (which was at Cox South). IT WAS CRAZY!!! On our way there, it was everything I could do to fight back the tears. I just feel so bad for Emmalin! She has been going through so much, for so long, and I just want her to get a break from all of it (puking, seizures, not eating or drinking, being sleepy all the time …)! It gets to be so hard to have to watch Emmalin endure SO much, especially knowing that all I can do is "sit on the sidelines and watch". So needless to say, I walked into Cox South with a heavy heart.

Once we were in there, we found Kristen from Children's Miracle Network and we were introduced to Lindsay from Power 96.5. During the "pre- interview" we were literally just asked about Emmalin's story. We started all the way back from the day when Emmalin had her first seizure. We started talking about how we make it through each day (handling all the stress and other things) and how we do our best to keep a positive attitude. Once Lindsay felt like she had enough information, she asked if we were ready to go "live". We did our live interview, but before it was over, Lindsay started crying. Jarrad and I felt so bad that she was upset, and realized at that moment how "immune" we had become to our "new lifestyle" since Emmalin had been born.

On a brighter note, we were SO grateful to have the opportunity to share our story and meet so many amazing people! We hope that through it, people were able to realize that we are/were genuine and incredibly grateful for everything Children's Miracle Network does for us (because we definitely wouldn't be able to do it without their help)!

Please understand that I have not told you all of this so that you can feel sorry for me and my family. I am sharing this all with you because God used this situation to "put me back in check". You see, by the time the interview was over, I forgot about feeling sorry for myself and I had started remembering how incredibly blessed I really am! God used that interview to remind me that it is all going to be ok and that "he has my back". I LOVE it when God "puts me in check" like that! There are so many times throughout this journey that I have managed to take things for granted, forget how truly blessed I am, and have failed to remember how He is always right there with me! I am SO grateful that EVERY TIME I start feeling sorry for myself, God reminds me how good I really have it!

GOD IS SO GOOD!!

 To check out more information about the Children's Miracle Network serving the Springfield, Missouri area, click on the link below:
                                     Children's Miracle Network in Springfield, Missouri

Benefit at Sweet Repeats Resale Shop

Jarrad and I just want to say THANK YOU SO MUCH!!  To everyone who came out to support our family yesterday!  A special thanks goes out to Sweet Repeats Resale Shop - and owner Jamie Cobb!  Jamie was the one that approached me saying that she wanted to help Emmalin and our family by putting this benefit together.  None of it would have been possible without her!!! 

Thank you to everyone who came out to support us!  Thank you so much to everyone who donated their money to purchase some of the things games and inflatables.  Also thank you to everyone who came out and volunteered their time to help out at the booths, tables, and games! 

NONE OF THIS WOULD HAVE BEEN POSSIBLE WITHOUT ALL OF YOU!!!

Thank you from the bottom of our hearts!  You will truly never know how grateful we really are that you all took time and money out of your busy schedule to help our family!  God bless you all!!

For all of the pictures from the benefit, check out our facebook page at:  Emmalin's Journey of Hope

Sikeston Got Canceled

I just thought that I would let everyone know that we are not in Sikeston right now. Six days before we were headed to Sikeston, the Kenny Rogers Children's Center had to cancel on us because they said some things "came up". Brandy said that she didn't feel that she would be able to give Emmalin the attention that she needed and so she thought it would be best to reschedule. We are now looking at going between Thanksgiving and Christmas. I was disappointed, but realize that we will get there when God wants us there. When the time does come for us to be up there, I promise to do my best to post video (if I can figure it out) and pictures!                                              God is Good!!!



Here are a couple more pictures from the benefit yesterday at Sweet Repeats Resale Shop:



Gage and Emmalin (he was trying to get her to clap)





Emmalin, Jarrad (Daddy), and My Grandpa (Em's Papa) at the Benefit





While at the benefit, Hallie had several things painted on her face and hands.  One of the things were "glasses".  She was SO CUTE!  She actually thought that people thought that they were real.  She was so proud of them! 

Emmalin and Her Cousin Hallie Ready For Bed After the Benefit :)









 

Community rallies to help buy wheelchair for Nixa toddler

Here is what KY3 had on the news last night about the benefit at Sweet Repeats Resale Shop yesterday :)

Community rallies to help buy wheelchair for Nixa toddler

Ozarks First.com - On Our Sweet Repeats Benefit September 24th, 2011



Emmalin with the Tiffany's Performing Arts Dance Team



Check out the article below that Ozarks First.com posted about our benefit today at the Sweet Repeats Resale Shop (click on it):

Ozarks First.com - Sweet Repeats Benefit Sale - September 24th, 011



Emmalin was ready for a nap!!



Thanks to all who helped us reach our goal and beyond at our benefit today at the Sweet Repeats Resale Shop in Nixa, MO.  We had an amazing day and couldn't have done it without everyone's love and support!  Thank you from the bottom of our hearts for being so generous with your time and money!  You will never know how much everything has meant to our family!  God bless you all!!! 

I plan on posting pictures later this evening and I am hoping that we will have something wrote up from KY3 later too!  Plus, something will be published in the Nixa Newsleader in the next Wednesday edition of the paper.  We can't wait to see it all!!

Emmalin and "Grandmo" with Carolyn the Clown

Emmalin hanging out with the Sumrfs

A HUGE thanks goes out to Jamie Jackson and the Sweet Repeats Resale Shop!  None of this would have happened without you!!

                             God is AMAZING!!!


"Aunt Jessica", Jamie Jackson, Emmalin, and Mommy


For more pictures, check out our page on facebook called:  Emmalin's Journey of Hope