Emmalin's Journey

Hard Couple of Days With Seizures

2011-12-11T15:34:00.000-08:00

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

2011-12-11T15:33:00.001-08:00

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

2011-12-11T15:33:00.000-08:00

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

2011-12-08T15:34:00.000-08:00

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

2011-12-08T07:27:00.000-08:00

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

2011-12-06T17:50:00.000-08:00

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

2011-12-05T16:45:00.000-08:00

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

2011-12-03T19:27:00.000-08:00

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!!!

2011-12-02T16:31:00.000-08:00

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

2011-12-02T15:27:00.000-08:00

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

2011-12-01T21:52:00.000-08:00

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

2011-11-30T14:30:00.000-08:00

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

2011-11-29T13:33:00.000-08:00

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

2011-11-29T12:59:00.000-08:00

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

2011-11-28T20:46:00.000-08:00

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

2011-10-07T20:51:00.000-07:00

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

2011-10-07T20:01:00.001-07:00

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

2011-09-25T11:40:00.000-07:00

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

2011-09-25T11:11:00.001-07:00

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

2011-09-25T11:02:00.000-07:00

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

2011-09-24T16:27:00.000-07:00

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

Sikeston Therapy Evaluation

2011-09-03T10:58:00.001-07:00

Em and Aunt Jessica eating at Jays

My sister (Aunt Jessica), Emmalin and I headed up to Sikeston last Monday to get Emmalin's evaluation done. I was SO impressed with the place!!! The Kenny Rogers Children's Center is AMAZING!!! We worked some in the Visional Impairment Room and in the Sensory Room. We had been told by Brandy Dallas, who will be Emmalin's therapist for those 3 weeks, that we will spend most of our time in those 2 rooms. Brandy has decided that we are going to focus on trunk control, which then will also tie into head control. I am so excited for these to be the goals because those were the two main things that I wanted to focus on for this year (and reaching out for/touching things). I have been told that a child doing this type of intensive therapy has the possibility for gaining what they would in 6 months within those 3 weeks. CRAZY!!! There is no way to tell exactly what Emmalin will accomplish during our visit at Sikeston, but the fact that we will be gaining ground is very exciting!!! I am going to try to post pictures and if I can figure out how to post video, try to do some of that also while we are there.

Emmalin was ready to get home and out of the car. Sikeston's a 4 hour trip - one way.

LOOK OUT SIKESTON, HERE WE COME

2011-08-22T21:26:00.001-07:00

Getting Ready For Sikeston

It looks like the last 2 weeks of September and the first week of October Emmalin and I will be up in Sikeston, Missouri so Emmalin can do a type of therapy called Intensive therapy for 3 hours a day and for 3 weeks in a row at a place called the Kenny Rogers Children's Center (http://www.kennyrogerscenter.org/). We are SO excited!!! It is an elective therapy, but I know 2 people that have taken their children there and have seen amazing progress within those 3 weeks. I am not expecting Emmalin to have the exact same progress as the other kids that have been up there, but are hoping that we will be able to see some progress and that it will be something that will be worth us doing again! We will head up there next week to check out the facility and to meet the therapist face to face that will be working with Emmalin. Her name is Brandy Dallas (PT) and she is supposed to be amazing! I am going to try to post pictures and video if I can figure it out.

Here are some pictures of Emmalin that I have taken over the last couple of weeks. They have absolutely nothing to do with Sikeston, but I thought that they were fun and cute!

Emmalin and her cousins playing at Grandmo's house!

Gearing Up for October 22nd – Journey of Hope’s 2nd Annual Benefit at Cartoons: Featuring 2 Bands, A Silent Auction and a Buffet

2011-08-02T20:03:00.001-07:00

Emmalin Working Hard at Therapy

Journey of Hope is now beginning the process of starting to look for donations for the silent auction for the benefit that will take place at Cartoons Oyster Bar and Grill on October 22nd. The purpose of the Journey of Hope is to help Emmalin and her parents financially with Emmalin's medical, developmental, physical, nutritional, educational and therapy needs. If you or anyone you know would be interested in donating something for the auction, please e-mail emmalins_journeyofhope@yahoo.com.

Emmalin in Her Stander Doing Her New Favorite Thing, Putting Her Hand Up to Her Mouth

Here are some pictures that are LONG overdue of Emmalin. I managed to misplace my charger to my camera, and so the camera has been "dead" for a little while. Sorry. I will do my best to post more pictures soon!

God is SO good!

Getting Some Sun

CDKL5’s Research Campaign Video

2011-07-16T12:18:00.001-07:00

Click This To View The CDKL5 Research Campaign Video

Hello everyone!! The International Foundation for CDKL5 Research (IFCR) is always looking for ways to raise money to help with research for CDKL5. With this money, they are exploring ways to help with seizure control and/or find a cure for CDKL5. They just put together a video that shows different people's stories that have CDKL5. Through this video, they are hoping to not only make more people aware of what CDKL5 is all about but also help them understand why raising funds for research to help find a cure is SO important.

I couldn't find a way to link this directly to this blog page, but if you click on the link (above in red), it will take you directly to the CDKL5 website where the video is on the main page. I hope that you will take a moment to check it out. It will give you a lot better understanding of Emmalin's journey (so far and in the future) with CDKL5.

God Bless You All!

1 Week Since the Feeding Tube Surgery

2011-07-12T21:18:00.001-07:00

One week ago today I was lying in hospital bed with Emmalin in my arms, thankful that the surgery was over, but not knowing how long the recovery would take. I have to say that Emmalin has BLOWN me away on how amazing she has done since the 5th of July. I can still tell that the area where her Mic-Key (I think that's how you spell it) button is, is still very tender. She won't move around very on her belly very much yet (and I wouldn't either). It has been a lot of adjusting for us both on figuring out the new eating schedule for her and knowing when and how much to supplement with each feeding. To be honest, we still don't have it figured out, but we are working on it.
I would have to say that the biggest change that I have seen in Emmalin is about 3 days ago she started becoming A LOT more vocal. She has phases throughout the day where Emmalin will jabber for like 5 OR 10 minutes on and off. I LOVE IT!! I hope that her jabbering continues and that in the next week to come that we see some other new things! I'll keep you posted!

God is Good!!

Day #3 - Feeding Tube Surgery - Emmalin Got Released and We Made It Home :)

2011-07-09T22:13:00.001-07:00

Day #3 in the hospital, we got to go off continual feedings and try a specific amount over a certain amount of time. Emmalin did well with 2 different feedings of that and so they released her!! We were so happy and eager to get home. While Emmalin was in the hospital, Jarrad and I had a lot of training on the feeding tube pump and the feeding tube in general. I also have several amazing friends who unfortunately have children with feeding tubes already and so they were willing to help out any time I had questions (or whatever) once we got home.
Well, we just had our second day home and I have to say that we definitely have some changes to figure out in our normal "everyday routine". Emmalin is supposed to get fed 5 times, 3 hours a part. Each meal is supposed to equal 4 ounces of Pediasure. The problem is that before the feeding tube was placed, Emmalin would only drink 7-14 ounces of Pediasure for the entire day. So right now our biggest obstacle is that Emmalin's stomach isn't familiar with being full with as much or as often throughout a 24 hour period. So she tends to want to sleep a little while after getting fed. I can also tell that sometimes she isn't very comfortable after being fed that much (it's just a lot for her right now). We actually have to get Emmalin up to 4 cans of Enteral Pediasure a day (each can is 8 ounces fed through the tube – if she doesn't drink and/or eat through her mouth). Right now Emmalin is more around 3 cans a day. But if we can get her to drink 4 ounces of her regular Pediasure by mouth in a feeding, then she gets to skip getting tube fed! We always shoot for that, but sometimes it just doesn't happen.
Healing wise, Emmalin is doing great! She just started rolling over again on her tummy today. Emmalin's stomach seems to still be pretty sore, but that's to be expected. We will head back up to St. Louis in a couple of weeks to make sure everything is healing the way it is supposed to.
So like I said, our biggest "battle" right now is just getting Emmalin's stomach back to where it is supposed to be for her height. And unfortunately, I think it is going to take Emmalin a little longer to get there than what is typically expected. But the worst part is over and I figure Emmalin will get there in her own time J

God is Good!

Day #2 – Feeding Tube Surgery

2011-07-06T23:15:00.001-07:00

Here we are, day 2 completely done. Emmalin has done amazing today! She could tolerate a lot more moving/sitting up (but could tell that it was still very tender around her stomach) and even turned to her side a lot today. We got to move from Pedialyte to Pediasure with Fiber in her feeding tube on continuous feedings (starting at 9mL per hour and moving up 8mL every 8 hours). And at midnight we will be at her max feeding (volume wise - which is what they want her on). We also got to give Emmalin her first meal by mouth tonight (since the night before her surgery). It was mashed potatoes and some Pediasure with Fiber. She didn't have a very big appetite at all, but it was a start.
We have been told that tomorrow we are going to get to try small "timed feedings", which they call bolus feedings (feedings that are not continuous). We have been told that with these, she will also get to eat by mouth/drink and then substitute the rest by the feeding tube. I am so excited that we are finally to this point! If Emmalin handles these small feedings well tomorrow, then we get to possibly go home J

Since Emmalin was only drinking around 6 ounces every 3^rd day and she was down to 14 ounces being our "normal", her stomach is A LOT smaller than it should be. So we are working with Dietician Bridget Jones again (of course here at the St. Louis Children's Hospital) to slowly get Emmalin's stomach back to where it can hold the "proper amount" of volume for a typical 2 ½ year old. We are hoping to work with local Dietician Angela Jenkins in our hometown for every day maintenance (as Emmalin starts to grow) of balancing the proper amount of calories to ensure Emmalin is gaining the proper amount of weight within the proper amount of time. Bridget said it could take a long time to get Emmalin to where her stomach will hold the entire volume she needs (nutrient wise) in 3 feedings a day. So it looks like we will be starting out on 5 feedings a day, spaced out every 3 hours. One of those hours Emmalin will be "hooked up" to her feeding tube pump to get those nutrients and she will be "off" from the pump the other 2 hours. (This will be a very different schedule for Emmalin and me to adjust to in our everyday schedules!!)
As far as the night went, Emmalin didn't sleep nearly as sound as she did the first night. I was hoping she would have got a lot more sleep, but it could have also been a WHOLE lot worse!!
It's important for me to remind you that Emmalin will be eating by mouth every meal she is tube fed. It is a HUGE deal for Jarrad and I to keep doing this because we still want to her eat as much by mouth as possible!

GOD IS GOOD!

Day #1 - Feeding Tube Surgery

2011-07-06T05:01:00.001-07:00

Yesterday about 8:30am, Emmalin was taken into surgery for a feeding tube placement. She was in A LOT of pain all day (and that's to be expected), but by around 1:30pm, Emmalin was already starting to raise up her feet and cross her legs (lol) and move her arms around. She would do great until she tried to "twist" around and that's when she would really hurt. Emmalin has done AMAZING!!! She hasn't even been on morphine since right after she got out of surgery (Tylenol only). Also, last night Emmalin was able to start getting pedialyte through her feeding tube as a continuous feeding and has done great with it (these are probably not the "technical" terms for this, but I don't know what the "technical terms are yet)! It's only 5mL every hour, but it's a starting point.

The doctors and nurses told us that the first night can be really tough, so Jarrad and I were preparing for a long night. Emmalin fell sound asleep around 9:45pm and didn't wake up until around 5:15am (when she had a mild seizure). She actually is still sleeping on and off as I am typing this.

My sweet baby this morning, snoozing away :)

Everyone keeps telling us that Emmalin is doing great and that everything is going/looking great so far. We hope to keep that up today J I also have to say that Emmalin is blowing me away by her strength and courage through all of this and is by far stronger than what I could ever be!

I don't know what today will hold, but we are hoping for the best! We are also hoping to learn about all of the feeding tube equipment today. I'll try to post again soon to keep everyone posted!

July 5th, 2011 – Feeding Tube Surgery

2011-06-27T22:18:00.001-07:00

We have been told that this coming Tuesday Emmalin will be getting her feeding tube put in at the St. Louis Children's Hospital. This is a day that Jarrad and I are dreading and are very excited for all at the same time. We are dreading it because we don't want our baby girl to be in any type of pain (no parent ever wants that). But we are VERY excited about all of the ways it is going to help Emmalin. She is down now to 23.6 pounds. Emmalin hasn't gained any weight since her birthday, which was almost 7 months ago. Actually since her birthday, she has even lost 2 pounds and it is for this reason alone that we are counting down the days! We know that God has it all under control and are trusting that He is going to help Emmalin have a speedy recovery with as little of pain as possible! We will then go back for a 2-3 week follow-up and then also a 2 month follow-up. Dr. Saito, who is the general surgeon that will be placing the feeding tube, says that it should take 2 months for the area around the feeding tube to heal completely. But Emmalin should be able to take baths again in a couple of weeks. They also say that Emmalin can start rolling around on her tummy again as soon as she feels like it. I am going to have an ace bandage there to wrap around the g-tube to make sure it doesn't get pulled out somehow. We will find out the time of the surgery on Friday (at some point) and I will post it then. Please pray for our baby girl as she starts this new journey with a feeding tube. I know it is the right thing for Emmalin at this time and pray that it will help her in more ways than what I can imagine!

God is Good!

Our CDKL5 Angels

2011-06-13T09:44:00.000-07:00

Someone made this video of some of our CDKL5 angels (that's what us moms who have a child with CDKL5 call our kids). I thought the video turned out great and so I thought I would share it!

CDKL5

Round 2 of Hippotherapy at Dynamic Strides

2011-06-13T00:11:00.000-07:00

This Tuesday at 5:00 starts the 2nd session of hippotherapy at Dynamic Strides (http://www.dynamicstrides.org/ or you can check them out of facebook at Dynamic Strides). We are so excited to have the opportunity to be able to participate in this program again (another 8 weeks)! We really feel/know that it helps Emmalin build up strength with her head and trunk control and some how I feel that it is helping her with her stepping also. We love Mrs. Marge, our horse walkers, and all the horses and we can't wait to see everyone again!!!

Felbamate (Brand name: Felbatol): Emmalin's New Medicine She Will Be Starting Tomorrow (6-13-11)

2011-06-12T12:23:00.001-07:00

Along with all of the other many complicated things that we have going on right now, Emmalin will now also be starting a new medication tomorrow called Felbamate or Felbatol. I feel like I need to say that it's important to remember that like most things, even though something may say it does a certain thing or has a certain reaction on whatever, everyone is different and each person is going to react to whatever it is differently. So saying that, Felbamate has the potential to really help calm Emmalin's seizures down (Em is up to anywhere between 3-6 "hard ones" a day –which her doctor has described as tonic seizures). Felbatol also has the potential of helping Emmalin's seizures stay under "control" longer than other medications that we have tried. As I was saying before, although we obviously do not know exactly how Emmalin's body will react to this medication and actually how much it will help her, it is nice to know the potential that could be possible on this medication.

Side Effects: Although there are several side effects, the couple that I want to mention (that freaks Jarrad and I out and this is why we have waited until now to try this medication):

There is a 3%-5% chance that Felbatol can cause liver failure. It can happen slowly (to where you could catch it), or it could happen very quickly. Doctor Weisenberg explained it to us like this, Emmalin has same % chance of getting struck by lightning as she does for this medication to cause liver failure (and it has never been reported to have happened on a child under the age of 18). But saying this, we all know by now that Emmalin always seems to take a harder road with things. We never seem to take the "easy road", but NEVER EVER the "hardest road". So, as I explained earlier, this is one of the reasons (and the main reason) why we have waited until now to try Felbatol. Because of the potential liver failure, Dr. Weisenberg will be keeping a very close eye on Emmalin's liver through several blood draws that Emmalin will have done over the next several weeks/months/years (Em had her first one done yesterday for a baseline). We will be taking her to get them done locally at the Infusion Center (and they are wonderful – thanks for getting us in there Dr. Hampton). The Infusion Center is not your typical "lab", but since we are kind of a special case, they have agreed to let us go there for all of Emmalin's blood draws J Anyway, once we get Emmalin's blood drawn, Dr. Weisenberg's office will get the results the same day. And this is their "game plan" for keeping an eye out on this, plus we have been explained symptom's to watch for and know when to call the doctor and/or 911. It is also very important that I mention that I have been told that if the person on Felbatol can get through the "first little bit" without any problems, then they don't seem to ever have any problems on this medication. I think the "first little bit" mean s a year, but I'm not really for sure.
It has also been explained to me that this medication has a small chance of causing insomnia (in case anyone doesn't know what that is, it's where you have a hard time going/staying asleep). Emmalin already has a lot of issues in this area because of her seizures (and anytime she cuts any teeth –which happen to be right now –got to love the 2 year old molarsL) and so this was another reason we have been holding off on starting this medication. I have been told by Dr. Weisenberg's nurse (one of them anyway) that Emmalin's evening dose of this medication should/could not be given past 6:00 pm and that's when she told me about the insomnia.
Oh, and the last reason we were trying to hold off on trying this medication was because it is also potentially be an appetite suppressant. And considering Emmalin is already not eating to the point that we need a feeding tube, we obviously don't need any more help in the area of not wanting to eat (just another reason this feeding tube is going to be such a good thing for Emmalin).

Well, I guess that's it for this medication. I probably should also mention that we are getting completely off of Banzel because we feel it didn't do anything for Emmalin. So as we start Felbatol, we will also be decreasing (very very slowly) Emmalin's Banzel. And we won't stop this decrease until it is completely gone J

GOD IS SO GOOD!!

Meet the General Surgeon on the 20th of June

2011-06-12T11:25:00.000-07:00

It looks like we will be headed back up to St. Louis on the 20th to meet with the general surgeon (Dr. Saito), who will be the one putting in the feeding tube. I am hoping that from this meeting we will get Emmalin's Upper GI (or at least get that process started) scheduled, get the "go ahead" to get an appointment set up with a GI Specialist (since that office is scheduling appointments 4 months out - very typical for Children's Hospital), and to be closer to getting (or get) a surgery date for the actual placement. Once we get back from this appointment, I will post the updates as soon as I get a chance!!

Oh... and Emmalin has to get an Upper GI done because they say it is a very "general" procedure that they do before anyone is getting a feeding tube. They want to know exactly how the stomach is shaped down there and that there won't be any other surprises the day of the actual feeding tube placement surgery. I have been told that the Upper GI will be done on the Same Day Surgery Floor. They will be placing a tube that looks like a feeding tube, into her nose and it will go down into her stomach. They will then put dye down the tube and take x-rays. This is how they will be able to tell exactly how everything looks in those areas so (like I said earlier) there will be no surprises on the day of the actual placement.

As I find out more, I will keep you posted!!! God is Good!!!

Just Found Out Emmalin Has To Get A Feeding Tube

2011-06-08T00:06:00.000-07:00

For the last couple of months, Emmalin has slowly stopped wanting to eat and drink. It's been several things that have been/still are in the mix that got Emmalin to this point. About 3 months ago, when we were at Dr. Weisenberg's office (Emmalin's epilepsy specialist and "main" doctor), she had brought to our attention that Emmalin had not gained any weight since her birthday (October 29th). She encouraged us to meet with a dietitian (again) and set up a "game plan" for if things were to go "south" (and of course these were not her exact words). So we did that and I even added another feeding therapist "on board" that we would see once a week (so now we have feeding therapy twice a week). The additional feeding therapy is done at the Ozark Therapy Institute (http://www.ozarktherapy.com/ or you can check them out of facebook at Ozark Therapy Institute) and our therapist's name is Dan McCool, Speech-Language Pathologist . He is AMAZING!! He is one of the very few therapist out there that treat the child that they are seeing "as a whole" instead of just treating the one area.
Anyway... we met with the dietician in Springfield, it was randomly after that things starting going south. Little by little Emmalin just stopped wanting to eat.

Emmalin and Dr. Weisenberg

Here's an example:
We went from getting Emmalin to drink around 24-28 ounces of Pediasure a day (which still isn't much) to around 16 a day (and sometimes less). She still eats some food, but it is mainly forced and it's not much.

So when we went to visit Dr. Weisenberg again, yesterday for a routine checkup, we found out that Emmalin still hasn't gained any weight and she has actually even lost a pound. We weren't surprised by this from the way she had been eating. So when Dr. Weisenberg brought up the subject of a feeding tube, as much as we were hoping she wouldn't mention it, we were not surprised by this either.

Some people have a hard time picturing things, so here's another example:
Emmalin wore 24 month clothing last summer. She was in 2T all last fall and winter/spring. When I went to get her old summer clothes out to sale from last year, not only could she wear them all, but some of them were even too big on her now. She has gone from 24 months/2T clothing to 18 months.

There are still SO many things that have to be sorted out and a lot of questions that don't have answers at this point because everything is so new. We do know that we will be getting the procedure done at the St. Louis Children's Hospital. Dr. Weisenberg has referred us to a general surgeon named Dr. Jacqueline M Saito, MD, to actually to the insertion of the tube. She is then having us follow up with a GI specialist, (we are still working on who that will be) who will then help us with the "maintenance" of the feeding tube. The GI will also be the one who will also address Emmalin's acid reflex issues (that are not major but there).

We also know that before Emmalin will have the feeding tube surgery done, we will have to do an "initial visit" with Dr. Saito and Emmalin will also have to have an upper GI done. We have been told that they do the upper GI to make sure that everything is in place/where it's supposed to be before the do the surgery. We now know that we are supposed to meet with Dr. Saito on the 20th but do not know at time or date for anything else. I will keep everyone posted as we find out more information.

Ok, so all this being said, YES Jarrad and I are totally bummed, scared, sad, nervous, etc... But honestly Emmalin is going to be getting SO many positive things from this feeding tube that Jarrad and I are also very optimistic. And these are the things that Jarrad and I have decided to focus on and we would like for you to do the same.

Ways Jarrad and I Feel Emmalin Will Benefit From Having A Feeding Tube:
1. Her body will have more energy and feel better all-around because it will be getting the nutrients that it needs
2. She will get to take her medications through her tube so she won't have to taste all of the bitter medication (3 times a day)
3. She will 100% of the time get 100% of her medication (because sometimes she will spit some of it out)
4. We think she could even sleep better because her body won't be hungry all the time (therefore restless)
5. She will do better and be stronger in therapies (because she will be well rested and have more energy)
6. If she is having a "rough day" and sleeping a lot, I can feed her through her tube while she is asleep (there have been several times where Emmalin will have a seizure right before or in the middle of eating and she doesn't eat anymore for that meal)
7. When it comes to eating, we will be able to focus on the quality of what we are trying to do instead of the quantity of calories we need to get in her
8. She will start gaining weight

Emmalin and Jarrad after her ERG Test Today

I spoke with a mother of another little girl who has CDKL5 and just got a feeding tube last week. She said that her daughter started gaining weight this week and within the first week of getting the tube, she was smiling and starting to laugh again. We are hoping for the same for Emmalin :)

I think it's also important that you know that we ARE NOT GIVING UP on Emmalin eating through her mouth (I'm sure you could tell that by some of the things that I have said). We are going to be keeping her feeding therapies going and work toward some great goals (but will be very challenging for Emmalin). Through our therapists we are going to try to strengthen Emmalin's muscles in her mouth (which will help her have more control in her mouth and help her chew better and easier) and we are also hoping to get it to where she enjoys eating (because right now she doesn't) and get a bigger variety of foods that Emmalin will tolerate (flavor wise and larger textures). So we have a lot of work to do and we realize that it is not going to be easy and that it is going to take a lot of time to try to accomplish everything (or even some of these things). But I am very confident that I have the right "team" behind Emmalin to give her every tool possible to help her succeed! Yes, there is a possibility that she may never eat on her own, but there is also the possibility that she may eat completely by mouth again one day and that's what we are shooting for!!!

When it comes to Emmalin's feeding tube, we are also 100% confident that we have the right team of doctors Dr. Weisenberg has been so amazing with us and Emmalin so far and we know that whoever it is that she refers us to is on top of their game. We have been so blessed that God has always given us such an amazing team of doctors/nurses/therapist/coordinators that genuinely care for Emmalin. And we are trusting in God that it will be the same in this case too!

Like I said earlier, yes we are nervous and scared about this new journey, but we are also very optimistic about all of the possible benefits!!! As we progress in this new feeding tube journey, I will do my best to post updates to keep everyone informed on where we are at with things and how Emmalin is doing.

Emmalin trying to wake up after her ERG Test

God is SO good and we are SO blessed!

HIPPOTHERAPY HAS STARTED BACK UP!

2011-04-07T10:09:00.000-07:00

Last night Emmalin got to get back on Freckles for the first time since November. Emmalin did SO well! As expected, there was a little regression, but not as much as I thought that there would be. So will now get to see Freckles for 7 more weeks (this session anyway) and then there will be 2 more 8 week sessions following this in the summer and fall. We are hoping to be able to participate in those also.

The place that we do hippotherapy at is called Dynamic Strides. It is an amazing place that is ran as a ministry (and strictly on donations). They ask that you pay $45 a week if you can, but if you can't they say to come anyway. Their "motto", for lack of a better word, is that as long as they can keep the horses fed and the lights on they are going to keep going!

If anyone out there has an extra hour or two and are wanting to get out there and participate something that is rewarding and will leave you smiling each week, think about volunteering at this Dynamic Strides. It's so wonderful!!! They will take any volunteer for as long as they are willing to be there (even if it's just an hour).

If you are interested in learning more about Dynamic Strides, making a donation, or volunteering, check out their website at: www.dynamicstrides.org

You can also follow them on Facebook and Twitter!

Pictures of Emmalin on Freckles will be coming soon!!!

1 YEAR WITH A DIAGNOSIS!!

2011-03-22T00:17:00.000-07:00

It was around this time last year that I got a call telling me that Emmalin had tested positive for the CDKL5 Gene Deficiency. Yes, when we got the call our lives were shattered! The hopes of Emmalin being able to be “fixed” were gone forever! But you see, before we had this diagnosis, we had been told that we had like an 80% chance of never finding out what was causing all of Emmalin's seizures (and she was only 17 months old). We had been told that it was probably something that was metabolic or genetic, and that there were literally millions of tests that they can run for those. So our game plan was to test for one thing, get it sent off to the Mayo Clinic (or where ever the one place in the US was that would run the test) and then wait for the results to come back(which normally took anywhere from 6 or 8 weeks). Once we found out we could rule that out, we would then draw more blood or do another spinal tap or whatever, just run the next set of tests. Emmalin was getting poked SO much and SO often!!! It is for this reason alone that I am SO incredibly thankful that Emmalin has a diagnosis!
Since she has tested positive for CDKL5, we have been able to take out the guessing on some of the options, medicine wise, and have been able to narrow in on what we think will work best. We have also been able to join a support group that is based out of the UK that is just for people who have a loved one with CDKL5 (which has been a HUGE blessing). Through this support group, I have been able to ask questions and read blogs about other children who have CDKL5 and it has helped me have a better understanding on where we are headed with Emmalin. I guess the biggest difference is just that, we now have a lot better understanding on where we are headed and what to possibly expect (at least a little bit) and that has made all the difference in the world!!! It just makes us not feel so lost with Emmalin and I FINALLY "feel like my head is starting to come above the water"! Getting this diagnosis changed our lives!!! And even though we would have loved for it to not have been something like CDKL5, like I keep saying, the fact that we now have an idea of the direction we are headed has truly changed our lives, in a good way, forever!

God is SO good!!

ROUGH AFTERNOON WITH SEIZURES

2011-03-21T23:54:00.000-07:00

Today Emmalin had 4 of her "big" seizures. I hate it when we have days like this! Yes, there are MANY people who have it a lot worse, seizure wise, than Emmalin, but for us, this was a hard day! You see, if we have 3 days in a row where Emmalin has seizures (the same amount in a day or the same times in a day) at the same time, in some way, and then I consider it our "norm". I know this doesn't seem like a long time before it's our "norm", but with Emmalin, her seizure types and amounts are constantly changing! It just comes with the territory of CDKL5 (at least for us anyway). Here lately Emmalin had only been having 2 "hard ones" a day and we have been pretty okay with that. Emmalin also has head drops and sudden jerks that are seizures, but as bad as it sounds, I don't even count those in her "grand total" at the end of the day. I know this may sound bad, but it's just the way it is.

Anyway...Emmalin had her 1st seizure today around 6:30am and then her 2nd one ended up being around 11:00. This one was a surprise because she had been only having 2 a day, one in the evening and one around 2:00pm or 3:00pm. Emmalin had to sleep a lot after her second one and that's very typical right now. So because of that seizure, we Emmalin had to eat lunch around 2:00pm (because of her sleeping so much), but she wouldn't really drink anything, which isn't normal for her. I should have realized that she wasn't feeling well right then, but played it off being from her molar that she is cutting and went on with our day. We then had to go run some more errands and then when we came back, she had her 3rd seizure around 5:15pm. Every time Emmalin has more than 2 seizures in a day, or if she's had 2 pretty close together, Emmalin doesn't normally feel good for the rest of the day (unless she has like 4 hours or so to "sleep it off"). Well, after Emmalin's 3rd seizure, she just didn't feel good, and her body kept having a lot of big jerks (poor thing). So Jarrad and I "through our plans out the window" for the evening and I just held her. She would try to relax (and go to sleep) and then she would jerk again and it would just make her wide awake again. I felt so bad for her! Then around 7:00, Emmalin had her 4th "big" seizure. Sometimes I wonder if she can tell that another "big seizure" is coming. I know today she just didn't feel good after her 3rd one (but who would) and this is pretty normal after a third. At that point, whatever it is that we have planned for the rest of the day we have to cancel and get Emmalin back to our house so that she can sleep or just be held and rocked the rest of the day. You just feel so bad for them as they have to go through all of this! Again, I realize that there are many people out there who have it worse, but knowing that still doesn’t' make me feel any better while I have to watch my baby have these bad afternoons. I HATE SEIZURES!!! After her 4th seizure, I got her jammies on and then Jarrad and Emmalin cuddled and fell asleep in the recliner. The best part of my entire day was watching the two of them together asleep in the chair. I know that may sound strange, but seeing them like that, made my day a little better. That's Emmalin and Jarrad's thing, getting their cuddle time in after dinner and Em's bath. I have to say that Emmalin is very lucky to have a daddy that loves her so much!

I feel like I need to say, as rough as an afternoon/evening that we had, we have definitely had worse!!! And when I go to bed, I will always thank God for Emmalin only having 4 seizures (or however many she had that day) instead of 5. Like I always say, it could ALWAYS be worse, we've had worse days!!! And I feel very blessed to be at the point where we have a diagnosis and Emmalin's seizures are down to 4 big ones on a hard day.
God is SO good!!

ROUND 2 OF ABM THERAPY

2011-03-21T23:11:00.000-07:00

We are soon going to be headed to St. Charles again for another round of ABM Therapy. We are very excited to see what exciting things my take place this time with Emmalin! Jarrad is getting to go this time (instead of my mom). It will be nice for Jarrad to get to see it in person instead of through the video camera!! I still having figured out how to get my video of the ABM sessions to post, so I am going to have Jarrad do the video this time and see if he can figure it out. Keep your fingers crossed!!! When we get back, and actually a little bit while we are there, I will post Emmalin's progress and keep you all posted on how she is doing!

While we are up there, we will also be seeing Dr. Weisenberg, Emmalin's epilepsy specialist. It is just for a regular update, but it will be nice to go back over the "game plan" for the rest of the Clonazepam wean. I will also post information about how this appointment goes when we get back! I'm hoping for it to be very uneventful!!

CLONAZEPAM

2011-03-21T23:01:00.000-07:00

Clonazepam...this is one of the four seizure medications that Emmalin is on at this time. Out of the four, this is the one that Emmalin has been on the longest. From the time that we started going to St. Louis to see Dr. Weisenberg, (Em's epilepsy specialist-who we LOVE), she has said that she only wanted Emmalin on 2 medications or less at a time (she was then on 4). This is also what Jarrad and I would prefer. So we have been trying to take Emmalin off some of these, but for one reason or another, Emmalin has managed to stay on 4 seizure medications. We have tried to get her off of her Clonazepam 3 other times so far. This is one that Emmalin's body REALLY likes (her body is addicted to it). Every time we get down so far, Emmalin starts having more seizures, and that is how her body has withdrawals (poor baby). So we end up putting her back on the original dose and go on. Well, this is attempt #4. Our game plan this time, is to reintroduce Topamax, which she has been on before and her body responds pretty well to (at least so far) and when she starts having withdrawals, increase the Topamax so that we can continue the decrease of Clonazepam. Once Emmalin's body had the opportunity to get familiar (again) with the Topamax then we started taking away the Clonazepam. We only take her Clonazepam down 1/2 a tablet every 2 weeks, so this is going to take a while (to say the least). We are also hoping that Emmalin's body won't have as many withdrawals because we are taking it so slow. We are now down from 5 pills a day to 3 pills a day. We have had to increase the Topamax as expected (and she's now on a pretty high dose of it) and Emmalin is still having some withdrawals, but we are making it through it. So far, Emmalin has been having some jerk and head drop seizures, some days more than others, and her larger (or as I call them her "big seizures”) seizures range from 1 to 4 a day (but mainly around 2). I realize that this amount of seizures in a day is not amazing, but believe me, it could be A LOT worse! I am keeping a very close eye on it and adjusting Emmalin's Topamax (under Dr. Weisenberg's supervision) accordingly. Next week we are supposed to bring it down another 1/2 a pill. I just hope and pray that things continue to go as smoothly as they have been throughout this process!

I'll keep you posted!

HIPS AND SPINE

2011-03-02T10:56:00.000-08:00

I think everyone would agree that, in terms of mobility, a "typical" 2 year old walks and runs all over the place. Considering Emmalin is still working on sitting up and head control, running and walking are obviously things that Emmalin cannot do yet. So, back in September of last year, Emmalin's doctor decided to do some x-rays on Emmalin's hips (both of them) and spine to get a baseline on how her body was developing as it was growing. When they came back, Emmalin's spine x-ray was great, but her hip x-rays showed that they were not forming the way they were supposed to be forming. We were told that this is very typical of children who have developmental delays and who are not walking (which means not weight bearing and that’s what the hips need to form correctly). Dr. Weisenberg thought that it would be a good idea to get an orthopedist "on board" so that we can start monitoring Emmalin's hips and spine more closely. So, back in January, we were referred to a doctor named Eric Gordon, an orthopedic doctor that also works at the St. Louis Children's Hospital. When we got in to see Dr. Gordon, and he said that Emmalin's hips were angled at 21 degrees and 23 degrees. A “typical” 2 year olds hips should be angled at 20 degrees. He also told us that given Emmalin's circumstances (developmental delays and not walking), he was not overly concerned at this time and that we will keep updating her hip x-rays every 6 months. I then asked him we can be doing at home to try to help the hips get a little more weigh bearing so they had an opportunity to form correctly. He said to make sure that we are doing exercises (that he showed us), keep up all the therapy, and to increase her time in her Super Stand (a piece of equipment we have at our house that literally stander her up).

As for her spine, Dr. Gordon looked at that x-ray and confirmed (again) for us that Emmalin's spine looked great. But he did say that now that she is 2 and still not walking, we will now need to start keeping an eye out for scoliosis. This is a normal thing that they start watching for in any child that is not walking on their own. Dr. Gordon said that we will repeat a spine x-ray once a year, as long as the spine continues to stay straight.

So for now, this is where we stand on these two things. We go see Dr. Gordon at the end of June again to follow up on everything again. We will be hoping that Emmalin's hips have formed a little more and that her spine continues to stay straight! I will keep you posted!!!

EMMALIN'S 2ND EYE SURGERY

2011-02-28T22:07:00.000-08:00

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!

2011-02-28T21:52:00.000-08:00

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

2011-02-28T21:36:00.000-08:00

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

2011-02-27T20:54:00.000-08:00

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

2011-02-17T21:54:00.000-08:00

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

2011-02-17T20:49:00.000-08:00

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)

2011-02-16T21:49:00.000-08:00

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!!

HAPPY THANKSGIVING!!

2010-11-24T00:09:00.000-08:00

Happy Thanksgiving to everyone! I hope that you have a great turkey day! We are lucky enough to get to spend the entire day with some of our family. Emmalin is going to get to eat the "official" Thanksgiving dinner for the first time and we are SO excited! This is a VERY big deal and I will post pictures soon! God Bless!

NIGHT AT MCALISTER'S IN NIXA NOVEMBER 8TH, 2010

2010-11-09T02:22:00.000-08:00

We had a great turn out for tonight! Thank you to everyone who came out and supported Emmalin and our family! It was so great to see everyone and we really appreciate all of your thoughts, prayers, and support!

We are not for sure what our next benefit will be, but we are hoping to start them up again around April, 2011. I will post more details when we get them.

EEG, X-RAYS, BLOOD WORK AND DR. APPOINTMENT - OCTOBER 27TH, 2010

2010-11-09T02:06:00.000-08:00

On October 27th, we headed up to St. Louis for some appointments for Emmalin. She had to see Dr. Tychsen for a regular checkup. Emmalin had to get some blood work done, to follow up the last part of the Ketogenic Diet. She had to get an EEG, which is a test where they measure the brain waves (Em's seizure activity). The last thing that Emmalin had to get done were some hip and spine x-rays to give the doctors a "base-line" to start from as Emmalin continues to grow.

On Emmalin's eyes, she will need to get another surgery done to get them realigned (up and down this time). This is a surgery that Emmalin has had done before (except they adjusted right to left) and something that we were expecting to have to be done again.

Her blood work came back great!

Emmalin During Her 9th EEG

Emmalin's EEG came back a tiny bit better than last years, which is always nice to hear!

When it came to her x-rays, her spinal x-ray came back great, but her hip x-rays came back showing that Emmalin's hips are starting to turn outward. Dr. Weisenberg said that they see this sometimes with children that don't walk when they are supposed to be walking. She said she didn't think that it was anything to be that concerned with right now, but something that we will need to keep an eye on and to be trying to start to correct it. You correct this by trying to put more weight bearing on the hips (really needs to be in "walking position" where the weight is over the hip area). So we have started trying to do more weight bearing things in all Emmalin's therapies and we are also going to be seeing an orthopedic doctor named Doctor Eric Gordon, at the St. Louis Children's Hospital at the end of January 2011. This is a type of doctor that we would eventually need to get "on board" with any way. But this way we will have him at the beginning of all of this and since it's his specialty, we will be able to make sure we are doing everything we need to be doing at this point for Emmalin (with her hips).
I will keep you posted as we continue this journey. For now the plan is to get as much weight on her hips as possible!

WATER THERAPY

2010-11-09T00:51:00.000-08:00

Em Ready To Swim!

Like I said in an earlier post, Emmalin has now had the opportunity to try water therapy. Water therapy is supposed to be great for anyone who has "low tone", and that is definitely Emmalin. I have always known that Emmalin liked the water, it relaxes her. So when I found out that there was an opening for water therapy, Jarrad and I decided that we thought it might be a great opportunity to try it out. Last week, November 4th, was her first full time in the water and she LOVED it! It's still a little new for Emmalin to be in a pool, with Jean (her PT water therapist), but once she warms up to everything she does great! She seems to be able to hold her head up for 20 seconds (instead of 10 "on land"). Emmalin was even starting to kick her legs around a little bit and her hand moved a little on one occasion. It was amazing! I can't wait for Emmalin to go back!

Ms. Jean and Em

CARVING PUMPKINS AND HALLOWEEN 2010

2010-11-09T00:44:00.000-08:00

Painting the Pumkin with Mommy

It's a tradition for my sister's family and my family to get together with my mom and dad and carve pumpkins. We have so much fun!

Cutest Little Piggy In Town!

This year for Halloween, Emmalin was a pig! I don't believe in spending a lot of money of a costume that she will only be wearing for a couple of hours, and so I always find Emmalin's at a second hand store. I have to say that Emmalin was, by far, the cutest pig ever! She looked so cute in her costume and most of the time she really didn't mind the pig hat.

Hallie, Hoyt, Papa, Emmalin and Haden

It's also a tradition for us to go "trick-or-treating" with Emmalin's cousins Haden, Hallie and Hoyt. They were, by far, the cutest police man, snow white, and dinosaur ever too! We had a great time!

2ND BIRTHDAY

2010-11-09T00:36:00.000-08:00

Em and Papa Knute

I can't believe that it's time for my baby girl to be turning two already! I didn't fully understand what everyone meant when they would say "time flys" until I had Emmalin. To me, she should only be about 6 months old. Anyway...for Em's birthday this year, we decided to just do things with our family. On Emmalin's actual birthday we just had my mom, dad, grandpa, and sister (with her kids) over to eat dinner and haD some cupcakes.

Daddy and Em on the Slide!

Mommy and Emmalin

The next day we had Emmalin's birthday party at the park. It was a little cool and REALLY windy, but a great day! We cooked out burgers, had cupcakes and just hung out with some more family. Emmalin got to go on a slide and park swing for the first time. SHE LOVED IT!!! It is something we will be doing more often from now on!!

"Grandmo", Em, Haden, & Hallie

Our goals for this year are head control and prop sitting independently! We'll keep you posted!

HAPPY BIRTHDAY EMMALIN

HIPPOTHERAPY

2010-11-09T00:27:00.000-08:00

Hippotherapy is a type of therapy that is done on a horse (or a pony named Freckles in Emmalin's case). While the child is riding on the horse there is a physical, occupational, or speech therapist on one side of the child working with them the entire time they are on the horse. There is also a volunteer that is guiding the horse and another volunteer that is on the other side of the horse (opposite of the therapist) holding the child the entire time it's on the horse. Most sessions are an hour. The child is typically 45 minutes on the horse and the other 15 minutes is used for mounting and dismounting the horse. What we are hoping Emmalin will gain from hippotherapy is core strength and head control. These are two areas that are very important for obvious reason. Since Emmalin does not walk yet, the movement from the horse is also very important for Emmalin. Emmalin loves to be moving all the time (her body craves it since she doesn't move very much on her own), so this is a great way for her to be able to get that movement that she needs while doing a little physical therapy.

Emmalin Riding Freckles! What A Big Girl!

On October, 26th, Emmalin had the amazing opportunity to start Hippotherapy at a wonderful place called Dynamic Strides (in Republic, MO - close to I-44). She does it with a physical therapist on one side named Marge. I am on her other side as her holder and then a lady named Barbie is Emmalin's pony guider. The pony's name is Freckles (and he likes to be fed carrots after our session). Emmalin will get to go to hippotherapy once a week until the end of November and then it will start up again around March, 2011. So far, Emmalin has done pretty well and seems to like it (for the most part). She had her 2nd week last week and she fell asleep after the 3rd lap. I couldn't wake her up for anything, so we just walked her around for 30 minutes and called it good. It was still great for Emmalin's body to get the movement from the horse, even if she was asleep.

MEDICAID FOR DISABLED CHILDREN

2010-11-09T00:07:00.000-08:00

*It was brought to my attention tonight that I have not been updating this blog a lot here lately and that I needed to post some new things. Sorry about all of this! There has been a whole lot going on and I haven't had a whole lot of time to type on here. I am going to try to catch everyone back up!!*

About 3 weeks after we had Em's Cartoons Benefit, I received a very important letter in the mail. It was a letter that stated that a secondary insurance that I had applied for back in April of this year for Emmalin, Medicaid for Disabled Children, had been approved. I couldn't believe it! I just start crying. This single letter had changed our lives forever (or at least until March 2012 when we will have to apply for it again). What this letter means is that people will still bill our primary insurance first (through Jarrad's work) for all of Emmalin’s things but then instead of billing us, they will then bill MoHealth.net (Medicaid for Disabled Children) our secondary insurance. So we really shouldn't have to pay anymore medical bills (besides co-pays), prescriptions (except for the Canada one that insurance never covered), parts of therapies (at the Meyer Center), and equipment (wheel chairs, leg braces, vests for trunk support and so on).

This is beyond HUGE for us! With MoHealth.net, Emmalin is now covered to have one hour everyday of PT, OT, and feeding therapy.

Before we got this, in Em's therapy, we were paying (of course after our 500 deductible before anything else) 20% of 30 weeks (twice a week) and then 100% of everything after that. We had raised $6,900 the night of the Cartoons benefit and to be honest, I wasn't 100% sure it was going to cover all of Emmalin's therapy costs for the year.

We went to see Emmalin's neurologist, Dr. Weisenberg, in September and she had said that Emmalin needed to be in more therapy. All I could think of was that we were doing the best that we could with the money we had (knowing that she was going to the Meyer Center 2 days a weeks -one day OT, and the other day PT and feeding therapy). As soon as I got that letter stating Emmalin had the secondary insurance, I called the next day to increase her therapy sessions to twice a week for OT and PT. She was also able to start water therapy at the Meyer Center because it was covered under the PT - one hour a week.

Now we can use the money that we raised to go for other thing that she needs, that are still very necessary! Like trying “extra-curricular therapies" (Hippotherapy, music therapy, craniosacral therapy) to see what she likes and what works best. We can also try the intensive therapy which is 3 weeks for 3 hours a day. It is $3,500 for the 3 week session and that doesn't include the hotel! I have been told that in intensive therapy, a child can possibly grasp in 3 weeks (developmentally) what it would normally take them to 6 months to learn. We also still have about $150 a month in Pediasure with Fiber for Emmalin's main source of food. And of course there are still some travel costs for all of our St. Louis trips. So all this is being said, yes, we still have a lot of places for this money to be going, but now we actually have the opportunity to give Emmalin everything that she needs, instead of the bare necessities (especially therapy wise). So just for future reference, this is what we will be raising money for in future benefits!

We feel so lucky and so blessed to have finally qualified for Medicaid for Disabled Children for a secondary insurance! Like I said before, it has truly changed our lives!

A BLAST FROM THE PAST

2010-11-08T23:10:00.000-08:00

Tonight was the benefit night at McAlister’s (in Nixa). All day I was running around like crazy doing last minute errands, trying to get poster boards done, finishing flyers, putting photos in a photo album and so on. Yes, I could have chosen to do some of these things (or all of these things) before today, but I’m a procrastinator and so it was all happening today. As I was running around, I notice that I have some boxes and a big yellow envelope on my porch. I did not have time to look at any of it, so I threw everything inside and ran out the door.

When I got home from McAlister’s tonight (which went amazing by the way), I ran across the big yellow envelope. It was from a woman that I had gone to high school with. A while ago she had asked me a little about Emmalin’s diagnosis and for my address. I gave my address to her and didn’t think any more about it. So I open up this envelope from her and find a smaller envelope inside that says “open at benefit on November 8th. Knowing that the benefit had just ended, I decided to open it right then. Inside, there are several different pieces of paper. I pull the first one out and it is a note from the same woman stating that after our conversation (when she asked the questions about Emmalin), it was heavy on her heart to do something to help. So she took it upon herself and contacted some of the girls that we went to high school with and she said she asked them to read the blog. She then explained to me that they wanted to help too. And sure enough, I found 9 different notes, cards and letters from 9 different women (that now live all over the United States). These were all women that when I was younger, I would go over to their houses and play. Most of them I haven’t even talked to since I was in school.

To top it all off, with each note, card or letter there was a check from each of them. Money that they worked hard for and selflessly decided to donate to help my daughter and family. I was BLOWN AWAY by all of this! It was all SO unexpected and it caught me completely off guard! I immediately just started crying. I still can’t find the words that can express how much I appreciate the thoughtfulness, kindness, and extreme generosity from these 9 amazing women!

To the 9 AMAZING women who went completely above and beyond (especially to the one that pulled this all together), thank you from the bottom of my heart! You will truly never know how much your kindness and generosity has touched me!

GOD IS GOOD!

CDKL5-Journey of Hope Benefit Video

2010-10-03T21:12:00.000-07:00

CARTOONS BENEFIT

2010-10-03T20:25:00.000-07:00

Wow! Last night was the benefit at Cartoons. I have to say that I was BLOWN AWAY by our turn out! I never dreamed that we would have that many people there! It was absolutely amazing!!! We are so blessed to have so many people that love our family and our daughter! Thank you to everyone who helped out in any way and thank you also to the everyone who came to support us! Because of every single person that was involved, we were able to make our benefit such a HUGE success! I am working on posting some pictures from the benefit so make sure to check them out (they will be on the right side column).
I can definitely say that we will be doing this one again next year and the same place ( I will keep you posted when we get the exact date and times). I hope to see everyone again next year! Thanks again for everyone's support!
GOD IS SO GOOD!

BENEFIT SONG AND VIDEO

2010-09-20T20:41:00.000-07:00

As you can see, Emmalin's first benefit is coming up very soon! When it came to putting it all together my sister, Jessica, has done it all. I have offered to help many times and her response is always to just focus on Emmalin and that she will take care of it. She also says that she wants to do this for her niece. So, as the time went on, I would ask every now and then if she needed any help. She said she needed me and Jarrad to do two things and they were to put together a song and video to play the night of the benefit, and again she said that she would take care of the rest.

Well, Jarrad hasn't taken this request very lightly. Jarrad decided to write an song. I helped come up with the lyrics, but Jarrad did everything else. Once we got everything recorded we sent it to Jarrad's brother, Corey, to help mix it. We just got the song back last night. I wanted to post the song on here right then, but Jarrad wants me to wait until we have the benefit. I am SO proud of Jarrad!! He worked so incredibly hard on this and this song is something that I know that we will cherish forever!

We also put together a video of just pictures and words to go with the song. We then sent that to Corey so that his friend could put it together for us. We are supposed to have it back by the end of the week and we are so excited! I will post the finished video/song once the benefit is over.

My sister and Corey have helped us out in such different, but HUGE ways! I don't know what we would have done/do without them! Thank you both SO much!!! We wouldn't have been able to get this far without you and all of your help! We love you guys!

SLEEP / NO SLEEP

2010-09-20T20:17:00.000-07:00

My Sweet Baby Girl!

Emmalin has a VERY hard time sleeping or I guess I should say staying a sleep! After putting her to bed every night, it either takes her about 20-30 minutes to fall asleep or she only sleeps for about 20-45 minutes and then wakes up. Either way it starts out, the other one always follows and she does this on and off until around 11:30pm-2:30am (most of the time). I blame a lot of it on her teeth right now because she is cutting two eye-teeth, but this just seems to be Emmalin's pattern a lot (it's just a little more extreme when she's cutting teeth). So most of the time when she does this I let her stay in bed. We have a video monitor, and so I watch her the entire time on it, but try not to go in there.

Em wide awake when she was supposed to be sleeping!

Tonight I couldn't help it, her teeth must be moving a lot, because she was wide awake in bed for an hour and fifteen minutes (not fussing, but just awake and happy). So I went in there, and there she was wide awake and talking. I couldn't resist, I picked her up, got her some milk and rocked with her in our rocking chair. I LOVE these moments with Emmalin!

I have to say that there is absolutely nothing better than cuddling with your baby! I LOVE being Emmalin's Mommy!

BIG GIRL CUP

2010-09-20T20:05:00.000-07:00

Just thought I would let everyone know that as of last Friday, September 17, 2010, Emmalin officially switched over to a sippy cup (her big girl cup). She will only take one kind, but I don't care. I am a happy momma in the world right now!!! I am so proud of her!

Thank you Kristi and Luke for finding the Nuby 3 Stage Non Spill Feeding System and thank you for telling us about it!!!

A LITTLE STORY ABOUT WHAT IT IS LIKE TO HAVE A CHILD WITH SPECIAL NEEDS

2010-09-20T18:30:00.000-07:00

One of the amazing women, named Tara, that I met that last Saturday night invited me to read some of her daughter's blog about some of the intensive therapy that she has done (because I'm starting to research about it for Emmalin for next year). While I was reading about all of that, I ran across this poem/story. I thought it had a very different, but incredible, way of explaining what it feels like to have a child with special needs. So as she decided to share this poem/story with all of her friends and family, I too would like to share it with all of you.

Welcome to Holland

by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability-to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this.......................

When you're going to have a baby, it's like planning a fabulous vacation trip-to Italy. You buy a bunch of guide books and make your wonderful plans. The coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland".

"Holland?!?!" you say, "What do you mean "Holland"??? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy!"

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there far a while and you catch your breath, you look around.......and you begin to notice that Holland has windmills....Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very significant loss.

But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.

I am so thankful for for my faith and the people God has placed in my life who started their own journey with their children before us. You have all been so supportive and I appreciate all the valuable wisdom you have give me.

AMAZING WOMEN

2010-09-20T18:24:00.000-07:00

Last Saturday night, I had the honor of meeting 5 amazing woman who also have children with special needs. I was invited by a friend, named Kristi, that also has a child with special needs. Before this night, I have never done anything like that. Yes, of course I have been out to eat before and visited with other people. But it was the first time I have ever went to "visit" with complete strangers and felt/knew that they understood where I was coming from on so many levels. There were not two children that were being "represented" that had the same thing. But as many of the others, I was able to relate with something that Emmalin was doing or has gone through with each child. It was an amazing experience! I feel SO blessed that God has allowed my path to cross with so many inspirational woman! This "group" meets once a month, and I have to tell you that I am already looking forward to next month!

MAKING MORE IMPROVEMENTS

2010-09-16T17:59:00.000-07:00

Working hard with Ms. Joyce

Like I said n my last post, Emmalin got off the diet last Tuesday, September 7th. That following Friday (the 10th) Emmalin's head control improved a little more! It's still not completely there, but it is SO much better than it was!

Look at that head control!

Practicing Siting Up

Also, Emmalin can sit up using her hands to hold her up (propping) for about 20 seconds (this started Tuessday night (the 14th). This is still not where she was before we started the diet, but before the diet, but she couldn't do this at all until Tuesday night!

Working on Sitting on Her Side

WE ARE SO PROUD OF HER!!! GOD IS GOOD!

OFF THE KETOGENIC DIET

2010-09-15T13:44:00.000-07:00

Eating Spaghetti

Wow, sorry it has been so long since I have posted something. So much has been happening since Emmalin got off of the diet last Tuesday, September 7th (at lunch time). Since last Tuesday, Emmalin has been blowing us away with the progress that she is making and continues to make in the eating/texture area. We went to see a feeding specialist on Friday to get an evaluation done and while we were there, Emmalin had her FIRST EVER piece of a whole green bean. I COULDN'T BELIEVE IT!!! She has never been able to tolerate something like that!!! Before the diet and while she was on the diet, she could only tolerate a little above stage 2 baby food. When Jarrad got off work that night, we made Emmalin some spaghetti (for the first time ever) and took pictures and videoed Emmalin eating green beans and spaghetti. I know it probably sounds a little extreme to be videoing that, but it was a HUGE deal!! Anyway... so Emmalin is now eating some solid soft foods. This is as far as she will go, but it's incredible!!! We will stick with these types of foods for a little bit and then try to push it a little more until we get to regular table food all the time. I can't wait!!

At Applebee's Eating her first meal at a restaurant!

Drinking water for the first time and not gagging!

Also, Emmalin drank water for the first time last Friday, September 10th. Again, this may not seem like a big deal, but she has never tolerated water before. She would ALWAYS gag when I would give it to her. So this is another HUGE milestone that we have crossed over and we are so incredibly excited about it (if you can't already tell)!!

ATTITUDE AND TEETH

2010-08-26T01:27:00.000-07:00

I started noticing last Friday, that Emmalin seems to be getting more of an opinion ( and sometimes a little attitude) about things. You see, until now, Emmalin really hasn't had an opinion about anything. Last Friday, her vision therapists came to our house. For the first time (consistently) when they were having her look at things, if she didn't want to look at it, she would just roll away. It was one of those moments when I was SO incredibly excited to see her starting to do something new! It was also one of the first times that I felt like I needed to let her know that it wasn't okay to do something just because she didn't want to do it.

Anyway... skipping forward to today, when I was wiping her face after eating her carrots, she decided to whine because she didn't want me to wipe her face. Of course I did it anyway, but again, she's never done that before. I know that this is going to sound pretty weird, but it was SO refreshing to hear her start whining just because she didn't want me to do something!!! I'm loving the fact that she's starting to get an opinion and hope that she keeps it up!

As for the teeth, just this past weekend Emmalin cut two of her bottom teeth (she has her two middle bottom teeth and she just cut the one on each side of those). On Monday night when Jarrad and I sat down to have dinner, we noticed Emmalin making some very serious faces and couldn't figure out what was going on. We soon realized that she had just found her new teeth. She kept running her tongue around them. It was so funny to see the faces that she was making, so I thought that I would share a couple of them with you (I was able to catch her making them right after she ate tonight). The pictures don't do the "looks" justice, but it was the best I could do.

A JAR OF CARROTS

2010-08-26T01:12:00.000-07:00

Today was Emmalin's first day to be able to eat a whole jar (actually about a jar and a quarter) of baby food since she started the Ketogenic Diet. This may not seem like a big deal to you, but it is a HUGE deal to us. For those who don't know a lot about the Ketogenic Diet, it is a very high fat, low carbohydrate and protien diet. Since Emmalin has been on it, she hasn't been allowed to eat very many carbohydrates. The only reason that she has been allowed to eat this many now is because we are weaning her off the diet. We are now down to 1.5:1 (1.5 times more fat for each carbohydrate and protein that she eats) and we are hoping to be off the diet completely by next week. I will keep you posted!

1ST DAY AT THE MEYER CENTER

2010-08-14T18:57:00.000-07:00

Last Tuesday Emmalin had her first day of occupational therapy at the Meyer Center in Springfield. I didn't know exactly how Emmalin was going to do because she had been up a lot through the night (she does this when she's cutting teeth). But she did great!! I was SO proud of her! Emmalin's therapist, Sebna, was very nice and really "listened" to Emmalin when she would try to tell her that she needed a break. Sebna also gave us some great things to work on for the week. Next week we not only get to go back and see Sebna, but we also get to add in physical therapy. It is so exciting to see what kind of progress she is going to be making in the future!! God is SO good!

Below is a picture that has nothing to do with Emmalin's therapy, but it was SO cute that I wanted to post it!

Emmalin and Jarrad skyping with Uncle Corey

IT JUST KEEPS GETTING BETTER EVERYDAY

2010-08-08T21:28:00.000-07:00

As you all know, Emmalin regressed in every area while she was on the Ketogenic Diet. From July 3rd, 2010 on, Emmalin has been getting stronger in an area of development and/or doing something new everyday! It has been SO encouraging!!! I wake up every day excited to see what Emmalin is going to "reveal". Emmalin had gone from rocking on her hands and knees, to doing nothing but laying there. I am proud to tell you that she is now rocking again and moving all over the floor (by rolling)! She also has started vocalizing again. She blows raspberries ALL the time and makes a lot of different noises.

Emmalin even laughed a couple of weeks ago for the first time since March 15th, 2010 (the day we stared the Ketogenic Diet). I have to say that there is NOTHING in this world like hearing your baby laugh!

There are two areas that Emmalin seems to be moving the slowest in (put still progressing) are sitting up and gaining back all of her head control (again). For the past two days (thanks to a suggestion from her therapist), Emmalin has been making HUGE headway in these two departments.

We have a little seat called a Bumbo that you can put a baby in to help them learn to set up and to help strengthen their backs. I haven't put Emmalin in hers for months because she had lost so much body control. Now that she is starting to gain it back, I would try to put her in it. But all she would do is arch her head and back backwards and lean back as far as she could go, (instead of sitting up like she was supposed to be doing). I think part of the reason she would do this is because she didn't have any control, but the other part of it was just because she didn't want to sit up (plus she really likes leaning backwards right now). So when her therapist was here this past Saturday, she asked if we had a bumbo, I said yes, but explained why we haven't been using it. She suggested that we put a magazine in the back of the bumbo to keep her from leaning back as much. A magazine, why on earth didn't I think of that? Anyway, it has totally worked. Emmalin still figures out how to lean around it sometimes, but believe it or not, I saw some improvement in her head control by the end of yesterday. Yes, Emmalin still has a very long way to go in both of these areas, but she's moving forward and that's all I care about! Today when we put her in her bumbo, she could hold herself up for longer amounts of time. Even when she did lean over the the side, she could straighten herself back up (most of the time). Now, this may not seem like a big deal, but it was HUGE!!! I couldn't believe it! She has made SO much progress in these two area in just two days! It is SO amazing!! God is good! I can't wait to see what tomorrow will hold!

EXPENSES OF A SPECIAL NEEDS CHILD

2010-08-08T11:59:00.000-07:00

Having a baby with special needs is VERY expensive! Right now, Emmalin is on 7 different types of medications and vitamins. Her seizure medications make up 4 of of that 7. Plus, we also have to make many visits to St. Louis (which is 4 hours away - one way) for doctors visits. There are also expensive therapy cost and Emmalin is starting to need some special equipment (like standers, wheelchairs and many other things). Plus she also has food expenses. I know that you are probably wondering why I am listing food as an expensive cost because every child needs to eat, but Emmalin's main source of food is still a liquid, so it can get pretty expensive to find something for her age that will give her all of the nutrients that she needs. Going through Emmalin's journey so far, we have found that when we have been told that something is "special" it has always also meant that it is going to cost a lot of money!

Emmalin in her new stander.

My sister, Jessica, had been wanting to put together a benefit for Emmalin to help with all of the expenses for a very long time, but Jarrad and I were too proud. The way we looked at it was that Emmalin is our child and it is our responsibility to provide for her. When Emmalin got her diagnosis and we realized that all of these costs were going to be a permanent thing. Jarrad and I got to thinking about all of the things that she is going to be needing in the future and how expensive everything is going to be, so we finally decided to swallow our pride said okay to Jessica. We also decided to try for, Medicaid, as a secondary insurance, and a couple of other financial assistance programs for disabled and visually impaired kids. We were denied for all of them.

Emmalin will be having her first benefit October 2nd, 2010 (I have posted more details about it on the right side of the page). We feel so lucky and blessed that everyone involved with the benefit has been so gracious and amazing! THANK YOU from the bottom of our hearts to everyone that is helping with it! You will never know how much Jarrad and I appreciate you taking time out of your busy schedule to help us!

Red is her favorite color!

Jarrad and I also have an amazing friend named Todd who has offered to help Jessica set up more benefits in the future. Together, Jessica and Todd are working on several more benefits for 2011 and possibly one more in 2010. I will keep you posted as I get more details!

I have to admit that sometimes if I sit down and really start to think about this journey, first of all I have to say that I feel very blessed to have such a wonderful husband and amazing little girl. But thinking about all of the obstacles that we have overcome and having just a small idea of everything that we have ahead of us, it can become very overwhelming if I think about it all for too long! That's when I just have to step back and remind myself that God has it all under control and that it's all going to work out the way it's supposed to. I have a hard time remembering that sometimes.

God is good!

THE RISKS OF HAVING ANOTHER BABY

2010-08-08T11:57:00.000-07:00

I forgot to tell you two important things. One, Jarrad and I are not carriers of the CDKL5 gene deficiency. The other is that this deficiency was "created" at conception.

We asked how this happened, knowing that we weren't carries of it, and this is how it was explained to us:
One of Jarrad's sperm or one of my eggs that had a "glitch" in it. When Jarrad's sperm and my eggs were being created, they were being produced in a "mass production line". While everything was "going through the line", there was a tiny glitch in one of the sperm or eggs while it was being created. They actually said that if it was early in the "production line", there could be 100 sperm or eggs that have this glitch. If it was later on in the "production line" there could have only been 1 egg or sperm that had the glitch.

Emmalin's geneticist, at the St. Louis Children's Hospital, told us that we have about a 3%-5% chance of having another baby with CDKL5 gene deficiency. I know these probably don't seem like very big numbers, considering everyone has like a 2% chance of something being wrong with their baby. But so far, we are 1 for 1, and so those are HUGE numbers to us!

We were also informed that there will never be a way to know if it was the egg or sperm that had this deficiency and how many eggs and/or sperm still have this deficiency (if any). We would just have to take our chances and wait until I got pregnant to test the baby. If I got pregnant, there are three different ways that they can test the baby to see if it had the gene deficiency. Two ways are done by tests performed during pregnancy at 12 and 16 weeks. The third option would be to do in vetro fertilization. When the cells multiply to 4, the doctor would take out one of them out and test it.

So, those are our options. Honestly if I got pregnant, and we found out that the baby had the CDKL5 gene deficiency, aborting it would not even be a consideration. And if that baby had the deficiency, Jarrad and I wouldn't be able to live with ourselves, knowing that we intentionally brought another baby into this world, already aware of the fact that it had a chance of being created with CDKL5 gene deficiency. We feel like it would be a VERY selfish act on our part and we don't think living with the CDKL5 gene deficiency is a life that any child deserves! Now, saying this, please know that we love Emmalin with ALL OF OUR HEARTS, we are SO grateful to have her and we think that she is perfect in every way! But when it comes to having another baby, and with all of the information that we have been given, it is a risk that we are willing to take. I guess we could change our minds later, but right now, this is how we feel.

God is good!

BASIC INFORMATION ABOUT THE CDKL5 GENE DEFICIENCY

2010-08-08T09:38:00.000-07:00

I got this from another child's site that has the CDKL5 gene deficiency. I think it includes all of great medical information it.

CDKL5 is a gene that is found on one of our sex chromosomes called the X chromosome. The letters are an abbreviation of the scientific name of the gene which describes what it does. The long-winded name is cyclin-dependent kinase-like 5. The CDKL5 gene was previously called STK9 and sometimes people think that the two genes might be different but they are in fact the same.

The CDKL5 gene provides instructions for making a protein that is essential for normal brain development. Although little is known about the protein's function, it may play a role in regulating the activity of other genes. The CDKL5 protein acts as a kinase, which is an enzyme that changes the activity of other proteins by adding a cluster of oxygen and phosphate atoms (a phosphate group) at specific positions. Researchers have not determined which proteins are targeted by the CDKL5 protein.

Mutations in the CDKL5 gene are have been found in girls with Atypical Rett Syndrome and boys and girls with X-linked infantile spasm syndrome (ISSX), West Syndrome and early onset seizures.

To date one girl with a milder form having moderate intellectual delay and autistic features with no seizures or physical disabilities has been diagnosed.

Some CDKL5 mutations change a single protein building block (amino acid) in a region of the CDKL5 protein that is critical for its kinase function. Other mutations lead to the production of an abnormally short, nonfunctional version of the protein. Researchers are working to determine how these changes result in seizures and the characteristic features of Rett syndrome [RTT] in affected children The involvement of CDKL5 in RTT seems to be explained by the fact that it works upstream of MeCP2, the main cause of RTT.

At the moment testing for CDKL5 is limited to children with a diagnosis of Rett Syndrome who have been tested negative to the Rett Syndrome gene MECP2 and a handful of children who have severe early onset Infantile Spasms or epilepsy onset within the first few months of life.

AND SO THE JOURNEY BEGINS

2010-08-07T23:29:00.000-07:00

Minutes Old

Emmalin was born October, 29th 2008, and started having seizures when she was three weeks old. As she started getting older, not only was she having seizures everyday (and still is), but she also started having major developmental delays (we are still working on sitting up and crawling, touching/holding anything with her hands), texture problems (with eating) and vision problems.

About 4 Months Old

When Emmalin was 5 weeks old, we met with pediatric neurologist, Arie Ashkenasi out of the Pediatric Neurology of the Ozarks office in Springfield, Missouri. He was absolutely wonderful, but couldn’t figure out what was causing all of Emmalin’s seizures activity. After seven EEG's, three MRI's, a ton of blood work, and a spinal tap, Dr. Ashkenasi sent us on to see Dr. Judith Weisenburg, an epilepsy specialist, at the St. Louis Children's Hospital. There, Emmalin had her eighth EEG. From that we were told she has about 3 different types of seizures going on in her brain almost 24/7 and because of all of the seizure activity, she has very few "normal" brain waves. Obviously this is a big deal for a lot of reasons, one being the longer these seizures go on in her brain, the more long-term brain damage will be done. Another is that because Emmalin has SO much seizure activity going on in her brain, it hasn’t allowed her the opportunity to be able to develop (developmentally).

Now all of this being said, Dr. Weisenburg still couldn’t figure out what was causing all of this seizure activity. When it came to “treating” Emmalin’s seizures, our goal was just to try to get them to slow down as much as possible! By slowing them down, we were hoping that it would allow Emmalin to be able to “gain some ground” developmentally.

About 6 Months Old

After Emmalin tried her sixth seizure medication, the seizures were still continuing so Dr. Weisenburg suggested that we try the Ketogenic Diet. This is a special high-fat diet that is supposed to help with seizure control. On March 15th, 2010 we checked into the St. Louis Children's Hospital for five days to get the diet under way, hoping to decrease or eliminate her seizures.

About 2 or 3 weeks into the diet, Emmalin was diagnosed with a CDKL5 Gene Deficiency - Early Infantile Epileptic Encephalopathy. This deficiency is VERY rare and, from what I have found, there are a little less than 200 cases in the world. I have been told by Emmalin’s neurologist that it’s kind of the “up and coming” deficiency, so they don't know a lot about it right now, but they are hoping to know a lot more about it in the next couple of years. From what I understand, for Emmalin, this deficiency means that she is going to be having very aggressive seizures on and off throughout her entire life and even when we find a treatment that will decrease or take away her seizures, the seizures will always come back eventually. Now, please know that we are very grateful to have been given a diagnosis because we had a 75%-80% chance of never finding out what was causing all of her seizure activity. Now that we have a diagnosis, our treatment goal is still to try to slow the seizures down enough so that her brain has an opportunity to let her develop (developmentally in all areas) and of course by accomplishing this, it should help minimize the long-term brain damage.

1 Year Birthday Party

After Emmalin's diagnosis, we decided to continue trying the Ketogenic Diet. Unfortunately, the diet only affected Emmalin in a negative way (which the doctors have never heard of). Very slowly she regressed in every area developmentally; she even lost all of her head control (which had never been a problem for Emmalin in the past). She lost ground in the eating/texture area, and Emmalin stopped vocalizing, smiling and laughing. As the days went on, Emmalin also started to become very lethargic and got to where she would only stay awake for like 5 or 6 hours out of the whole day. As if all of this wasn‘t enough, Emmalin's seizures had ballooned up to like 12 to 17 a day instead of like 2 to 5.

1st Time to the Pumpkin Patch (2009)

On June 29th, 2010, we decided to start weaning Emmalin off of the diet and we started her on a new medication called Sabril (Vigabatrin) on June 30th.

I am happy to report that on July 1st, Emmalin only had 1 very mild seizure (that was it for the ENTIRE day)! Since that day, Emmalin has been having a couple of seizures a day, but still NOTHING like it was on the Ketogenic Diet (before the Sabril)! Also around July 3rd, Emmalin started to slowly gain back some of the things that she had lost developmentally. Day by day, Emmalin is starting to gain some of her old skills back and she is getting stronger and stronger. She hasn't gained anything back completely that she had lost, but at least she is moving forward now instead of continuing to lose ground! Like I said before, we don't really know how long this medicine will work for Emmalin before it will start losing it‘s effect and her seizures start to come back stronger. We hope it will be for a very long time, but only time will tell. We just thank God for everyday that she gains some of her strength back and has very few (or none) seizures and pray that she will continue to do the same the next day!

Easter Day - 2010

When it comes to her vision, we realized very early on that something was wrong with Emmaln’s vision. Dr. Ashkenasi had told us that Emmalin had a whole lot of seizure activity going on in the occipital lobe, which is where the visual information is processed. He knew that all of this seizure activity was probably part of the problem on why she couldn’t see very well, but he wasn’t 100% sure if it was all of it. So he sent us to see Dr. Tychsen, the head of the pediatric ophthalmology department, at the St. Louis Children's Hospital. We have been able to discover that she has a lazy eye, Ocular Motor Aproxia, and Cortical Vision Impairment. On January 7th, 2010 Emmalin had both of her eyes operated on to try to fix her lazy eye. The surgery was a success and so far, Emmalin’s eyes have stayed aligned. We now follow up with Dr. Tychsen every three to six months to make sure that everything is still going okay.

A couple of months ago, Emmalin was given the opportunity to participate in a clinic for the visually impaired in Springfield, Missouri ran by Drury University. It is eventually supposed to be for all ages, birth through adults. It is in it’s early stages and Emmalin is one of five people who are in it. This clinic as truly been a gift from God for us! This is the only thing like this in the Springfield area (that I know about anyway) and it is totally FREE!! We feel SO blessed that Emmalin was given this amazing opportunity!

June 2010

As for Emmalin’s eating, we believe that the seizures have also been playing a factor in all of her severe texture problems. Emmalin has an “issue” with anything going in her mouth. To this day, she still can’t tolerate anything above a stage two level baby food and gags on any type of juice or water. So this has left her main source of food being some type of formula. Our goals for Emmalin, in this area, are to eventually eat solid food and drink out of a sippy cup (or anything besides a bottle).

Family Picnic - July 2010

Emmalin has had the amazing opportunity of participating in the First Steps Program ran through the Developmental Center of the Ozarks in Springfield, Missouri for therapy. We actually just got it cleared to add in vision therapy twice a month. We started it today, and it’s AMAZING! We are so lucky to have it! But since Emmalin is getting ready to be two, Jarrad and I talked and decided that it is time for Emmalin to be getting more than an hour a week in therapy. So, we are getting ready to start more therapy at the Meyer Center in Springfield, Missouri in the eating, physical, and occupational areas. We are very excited to be able to be getting these therapies started and look forward to seeing what kind of progress Emmalin will be able to make in the future!

INTRODUCTIONS

2010-08-07T22:00:00.000-07:00

My name is Tiffany and my husband's name is Jarrad. We are just your average married couple and live in a very small town (that I love). We met when we both worked at a theme park in Branson, Missouri called Silver Dollar City (a Christian based theme park). I was in one of the shows and Jarrad ran the sound and lights for one of the other shows. We have now been married for 5 years. It really doesn't seem like it's been that long!

I got pregnant the beginning of 2008, had a perfect pregnancy, and we had our first baby (and only child), Emmalin the end of October. I have to say that I never knew that a baby could be that beautiful! Emmalin seemed completely fine, besides the fact that she would cry A LOT! When Emmalin was 3 weeks old I noticed her doing some things that I didn't think were normal. I waited another day, trying not to be the first-time-mom that was just freaking out over every little thing. So the next day after she had a couple more of these "things", I took her to her pediatrician (who is awesome). She confirmed my worst fear (but in my gut I already knew it was true), that what Emmalin was doing wasn't normal and so she sent us to see a neurologist. When Emmalin was 5 weeks old, Dr. Arie Ashkenasi told us that Emmalin's EEG showed that she was having seizure activity in her brain. When you hear something like that, as parents, your hearts sink. All you want to be able to do in life as a parent, is fix whatever it is that is wrong with your child and make them feel all better. When something happens to them that you can't fix, it makes your "heart sink". Our baby was only 5 weeks only and we were finding out that she had seizures, this would be the first of many "heart sinks".

Even though there have been a lot of hard times with Emmalin, there have also been SO many amazing ones too! In this blog, I hope to really focus on the good things. In life in general, most of the time I have always tried to be one of those people who looks at the glass as being half full. When I had Emmalin, and started learning about all of the challenges that we were going to be facing, I knew that I wasn't going to have a choice but to be one of those "half full" people, especially in those times when I may not feel like it. If I didn't do this, I knew I would be crying all day, everyday! What good was that going to do anyone? So as each day comes, I try to find the positive in the situation. Believe me, sometimes it's WAY harder to do than other days! If Emmalin has had 6 seizures that day, that night I pray to God and thank him for her not having 7. I also pray that the next day will be better than the last. Anyway, I'm not telling you all of this stuff just to be a major cheese ball. I just want you to know that yes, I do have hard moments and/or days. When those happen, I pray a lot, have a good cry and then try to move on to something positive. I just don't see the point on staying so focused on how bad things are for you when there is ALWAYS someone out there who has it worse! God is SO good! I am a firm believer that everything happens for a reason and that everyone is put in this world for a purpose. I know that God has a plan for Emmlain's life. She is the most amazing little girl that I have ever known and I am so proud to be her mother!