Sikeston Therapy Evaluation





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

 

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

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

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

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 :)

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

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!