Emmalin Age: 7.5

Emmalin Age: 7.5

Friday, October 2, 2015

Gearing Up For the Columbia Intensive

It's just a couple of days before we (me and Emmalin) will be leaving to go to Columbia for Emmalin's intensive therapy sessions at the Children's Therapy Center.  It will be a chance for Emmalin to work on head and trunk control in the PT intensive.  As far as the OT intensive, we will be working on one of 2 things, activating her switches with her head  and with more consistency and efficiency (the left side is VERY hard for her) or reaching out for toys with more control and consistency (and other things) and holding things in her hands.  Yes, I realize that activating switches



and reaching for things are completely different things, but I am a little worried that working with switches (with her head) may be too much since Emmalin will be working on head and trunk control in the afternoon.  I would LOVE for Emmalin to get to work on activating her switches for more consistency and efficiency.  It would benefit her for the augmentative communication device that we are close to ordering (because she activates that by left and right candy corn proximity switches), it would help her when she is using her switches to play her games on her iPad, and it would also help her for when she gets to work more with the power wheelchair (because she moves the chair around by proximity switches on her head rest).  All of these things will help Emmalin have more of a "voice" and be able to interact more with other people (which is amazing).  But as I said, I am wondering if it will be too much for her, so if this is the case, I will ask to see if we can work on building her arm strength up so Emmalin could have more control when reaching for objects.  I would hope to also work on holding toys (and other things) in her hands so that maybe Emmalin might realize that it can be fun to use her hands to play with things (and even throw and hit things for that matter - ha).  Emmalin has never discovered how her hands can help her interact with everything in a completely different way instead of just being able to look at it or hit it (although I am VERY grateful for what she can do)! 
  So when we get to the intensive Monday morning, we will see what we end up focusing on.  You see, up until just a week ago we were headed to Columbia for just the OT Intensive.  At the last minute someone dropped out of the PT Intensive program in October and thats how Emmalin had the opportunity to do it in addition to the OT intensive while we are up there now too.  Yes, I am worried about it being too much for Emmalin (doing both intensives at the same time), but that's another reason why I am trying to focus on 2 different things.  

In case some of you don't know what all an intensive therapy session entails, it is 3 weeks (actually 4 weeks in our case) of 3 hours of therapy each day, 5 days a week (in a row).  Emmalin will actually do the OT in the morning for 2 hours and then the PT in the afternoon for 3 hours (with a 2 hour break between them).  The idea is that by  having the chance to consistently work on 1 thing the entire time, a person has the chance to possibly gain as much as they would in 6 months within those 3 weeks.  

We are hoping that Emmalin will make great strides with her head control while we are here.  Any gains will be HUGE and we are SO grateful for this opportunity for her to do the intensives!  

I have to say, as excited as I am to go to Columbia, when it has come to getting ready for this trip and packing everything that we are going to need for this trip, I have not been so excited to get all of it packed!  I quickly realized that packing for an entire month is COMPLETELY different than any other thing I have ever packed for in the past!  Normally it's me packing for a down and back trip to St. Louis to see doctors or a couple nights in St. Louis for some back to back doctor visits, or a hospital stay...but packing for a month...it's been crazy thinking about all of the different things that I need for Emmalin when we are staying some place for that long.  You can normally get by with not having a lot of things when it's just for a couple days, but not for a month!  We are having to bring her bath chair, a hand held water nozzle for the shower, her IV pole for her feeding tube pump (and feeding supplies), her VEST machine incase she gets sick again (because Emmalin is getting over a cold right now), her suction machine (and all of those supplies), diapers for a month, wipes, a months supply of food (which is all in 8 ounce bottles of liquid - that she has 5 of in a day), all of her therapy equipment, all her medications, her pulse ox, and a whole lot more!  My mom gave me the idea of putting it all in those tupperware bins, and I am SO glad that my mom came up with that because it has been by saving grace!  I have been able to fit a lot in each bin and even though I have filled up a lot of them, they are all organized and that will make it easier for me once we get to Columbia!



Don't get me wrong, I am in NO WAY complaining about all of the packing, (as I said) we are SO grateful for this opportunity for Emmalin to gain some strength, I just didn't realize how much packing was going to need to take place.  Slowly but surely I am getting it all done and one way or another Emmalin and I will be heading to Columbia on Sunday to start this amazing adventure!

I'll be posting updates, pictures, and some videos (hopefully) as we go through each week (so keeping checking back).  

God is Good!

Oh.. and the pictures are some of what I took for Emmalin's benefit (we needed updates photos).  I hadn't posted them on here yet, and so I decided I might as well with this post.

Monday, September 14, 2015

Miracle League Fall 2015

Today was the first day of the fall baseball season at the Miracle League Field! This is actually Emmalin's 3rd season to support. As always, Emmalin loved it and we are SO grateful she had this amazing opportunity to play baseball!! It is something that I never thought would be possible for Emmalin and honestly I was surprised by how much she likes it! We are SO grateful for a of the individual that come together to make this possible for all of these amazing individuals!! Here are some pictures of her tonight (first game of the season).

Oh and those 2 ladies are were our buddies tonight. Each player gets buddies to play with them each game to make sure they are safe and have fun!

God is Good!




























- Posted using BlogPress from my iPhone

Results of Power Wheelchair Trial

Last Thursday we officially finished the power wheelchair trial. How did it go? Well, Emmalin DEFINITELY has a long way to go when it comes to learning the directions. The most amazing part of it for me was the fact that while Emmalin was in the power wheelchair, she would keep her head up about 95% of the time (and maybe even a little more than that). Yes, she did have her leg braces and benik vest on (the pink thing you see on her in the pictures and videos), but the fact that she would keep her head up for as long as she would at one time was amazing. She would wear out after about 40 minutes or so and that's great for her! You see normally when Emmalin is in her wheelchair it is a battle (a lot of the time) between her and the person pushing get wheelchair for her to keep her head up. She normally drops it down and I (or whoever) are constantly telling her to put it back up. Don't get me wrong, sometimes she does great with keeping her head up, but there are a lot of times Emmalin decided she wants to hang her head.

So going back to the trial, the fact that Emmalin will keep her head up for as long as she does is huge! We think the fact that she is moving the chair is motivating for her to keep it up. And if she ends up getting the chair, we would work on building up her tolerance from 40 minutes.
The other huge reason it's a big deal that she is keeping her head up for as long as she is (at one time), is that the longer she can keep her head up the stronger it is going to get. The stronger her head gets puts her at a less of a risk for respiratory issues (including aspiration).

They way I look at it, the power wheelchair is a win win situation if we end up getting it. "Worse case scenario" (which really would be a "worse case" at all in my opinion), we continue to work with Emmalin 4-5 days a week and she continues to build up her head strength (which puts her at less of a risk for respiratory issues) and she continues to work on learning her directions. "Best case scenario", this chair ends up being her main chair and main way moving around (and all by herself - which is huge).

We haven't touched back with St Louis since the trial has stopped, so nothing has office been decided, but I will keep you posted!

God is good!


- Posted using BlogPress from my iPhone

Friday, September 4, 2015

Day 5 - Final Day of Wheelchair Trial

Today went a little better than yesterday. They are having us bring home the chair to practice with until next Thursday. I think it will be good to practice with Emmalins vision teacher and other therapists back at home (because it wi be different environments and different people working with her).

We headed back today and I think it's safe to say that both of us are glad to be back and sleeping in our own bed! Again, I am SO grateful Emmalin had the opportunity to have this amazing experience! I think the greatest thing that has come out of the trial (at least that we have noticed so far), is that while Emmalin was working in the power wheelchair she has continually kept her head up (at least 98% of the time). In her other chair Emmalin (as of now) hangs her head about 45% of the time she is in her chair. By having the increase time of Emmalin keeping her head in the upright position, it puts her at a smaller risk for respiratory issues (including aspirating). We have found that it seems to be motivation for her to keep her head up so that Emmalin can maneuver her power chair. This is HUGE!

Now that we are home, we will continue working very hard to give her a chance to co to use to get familiar with the chair and how to maneuver it in her natural surroundings. Once the power chair is picked up, we will reevaluate the situation from there and see how things are going.

Below is a picture of me and my baby girl cuddling. Nothing beers cuddling with Emmalin!

God is good!




- Posted using BlogPress from my iPhone

Thursday, September 3, 2015

Day 4 of the wheelchair trial

Honestly, today didn't go as well as I was hoping for... Emmalin wouldn't follow directions and just didn't seem to want to work today.

I did t get a picture of Emmalin and her amazing OT Melanie Wood while they were working today.

Hoping tomorrow goes better!



God is Great!


- Posted using BlogPress from my iPhone

Wednesday, September 2, 2015

Day 3 of the Power Wheelchair Trial


This is a video of Emmalin working on stopping. She can stop 2 ways (and we are trying to teach her both). 1 way of stopping is by tucking her chin and the other way is by adjusting her head. She is always very serious when she is working hard driving the wheelchair (as you can see in her face). We will be bringing the chair home with us on Friday and returning it on the 17th of this month. We are excited and incredibly grateful we have been given this opportunity.

Our goal will be to continue getting familiar with the chair and starting to build up the amount of time she works in the chair before she gets tired.

YouTube Video


God is good!



- Posted using BlogPress from my iPhone

Location:Childrens Pl,St. Louis,United States

Tuesday, September 1, 2015

Day 2 Power Wheelchair Trial

Well, today's high point happened this morning when we were at the St Louis Children's Hospital practicing with the amazing OT, Melanie Wood. We took Emmalin outside to practice. When we got out there, Emmalin did great but she tired out a lot quicker than yesterday. Melanie explained to me that she has been working really hard to keep her head up as much as she has while driving the wheelchair (because Emmalin normally hangs her head a TON), and so Emmalins neck could actually be sore from working so hard yesterday. Just like yesterday, going right is A LOT easier for her to do than go straight, but Emmalin did actually go left a couple times today (which was exciting). At the end of the time, Emmalin was really tired. We told her that she had to drive the chair to me and she could get out (being able to get out of the chair is a very big motivation for her). It took her about 5 minutes and she had several times she went is circles a couple times between times she moved the chair straight, but SHE DID IT!! Emmalin drove her wheelchair to me so she could get out! It was amazing!! She was exhausted when got to me and I got her out as fast as I could (and that made her happy because she hates being strapped down in her wheelchair). I was SO proud of her!!

Melanie said we need to continue to give her space that she can explore in the wheelchair, and that we also need to work on teaching her to stop (because right now she doesn't seem to care about the stopping).

So later this afternoon / early evening we went down to the parking garage here in our hotel to get some more practice in...unfortunately Emmalin ended up having a really hard seizure right before we left to practice and so she didn't do well at all. Poor thing!

We are hoping for just as great or a morning tomorrow and hopefully a more successful afternoon tomorrow as well. We are SO grateful we have been given this amazing opportunity and looking forward to see what tomorrow will hold!

God is great!

- Posted using BlogPress from my iPhone