HAPPY THANKSGIVING!!

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

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

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





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

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

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

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

*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

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

CARTOONS BENEFIT

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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!