Day #4 of the Intensive

What a difference a day can make!  Emmalin did well in her first hour of OT!!  When it came time to work with Miss Katie in the second hour...well, that was a different story.  But then in PT, we could definitely tell Emmalin had made some progress!  She didn't tire out nearly as quick and she seemed to not be as sore!

 

   (Working on standing and walking with Miss Mary)

Going back to the 2nd hour of OT today....well, let me just say that Emmalin has refused to do stuff for therapists in the past by turning her head away, making funny faces to show she wasn't happy about what she was doing, and even frowning her eyebrows....but today was first day I saw her do it all at the same time.  She was even trying to hit the therapists a little bit because she was that mad (please understand when Emmalin "hits" someone,  the person she hit has no idea that they have even been hit because it is not hard at ALL and looks like she's just reaching out to touch you - but I know when she's trying to be mean and so I make sure I acknowledge it and tell her she can't do it).  Back to ther therapy today...This was the first time I have ever seen Emmalin just point blank decide she was NOT going to participate (willingly) with therapy...I've never seen her do so many facial expressions with her mouth and her eyebrows at the same time...ha!  Emmalin only willingly participated in about 10 minutes out of the entire hour!  

Honestly, it was really cute and amazing to see her figure out she has that she actually has some control over the situation... But saying that, I still made her work and let her know it wasn't ok for her to just decide she wasn't going to do it (I at least tried to sound serious and stern - don't think it worked or that she cared).  Emmalin also has to start to understand that sometimes she can't be the boss...But seriously, just look at the picture (its so cute)...it says it all!  (Zoom in on her face...ha!)

 

(Emmalin is just refusing to do anything for Miss Katie and Miss Megan...but they were so great and kept trying to find ways to motivate her...Emmalin just wasn't in the middle for it...ha!)

 

Can't wait to see what tomorrow holds!  God is good!

Intensive Day #3

 

(Working on some blouncing and standing in the cage)

 

                        (Swinging with Miss Mary)

Today was Wendesday, which meant it was her 2nd day of the PT and her 3rd day of the OT.  Emmalin did well in the OT.  When it came to the PT, you could tell she was really sore from day #2.  She was really sore, and struggled a lot as the intensive went on bc she was tired, but she continued to work hard until the end.   I know she was glad to be done today and will be ready to rest tonight!  We are SO grateful for the opportunity to be here! I know Emmalin is sore now, but once she gets over the initial soreness, she will do great (she's still doing great now).  She will start getting stronger a little every single day and by the end of the fourth week, we will see a difference from when she started.  Her being sore today is definitely all part of the intensive process, but that being said, it was still hard to see her so tired.  I'm SO proud of her!  She is doing AMAZING (even though it was a rough afternoon).  I'm looking forward to her feeling a little less sore each day!!

God is good!

 

                (Gearing up to do some walking)

2nd Day of the Intensive

 

             (Emmalin working on reaching and 

           holding the switch down in OT today)

 

          (Em working in the "cage" with Miss Mary)

Today Emmalin got to work in all 3 areas (OT, SLP, and PT).  This was her first day to do the PT session.  We worked a LOT with her standing.  I honestly think it was the most standing she has ever done at one time in her entire life! Yes, she does her stander at home, but this was a lot of going from sit to stand and Hank g to figure out how to balance her own weight.  You could tell by the last 45 minutes she was exhausted.  But for her first day, I thought she did amazing!  Emmalin did a wonderful job of following direction and really trying her best to do what was asked of her.  I was SO proud of her!  She's my hero!  If Emmalin can continue to work this hard the entire 4 weeks, I know she is going to get a LOT stronger!  I guess we will see how it goes!  

God is good!

 

       (Emmalin in the therasuit - which gives her 

         body proprioception and some stability)

 

               (Emmalin working on balancing her 

    body - with more control - when leaning g forward)

1st Day Of the Intensive Is Done

Today was our first day of Emmalin's intensive therapy session.  She did OT from 9am-11am.  Our PT ended up getting sick today (poor thing) and so Emmalin didn't do the PT program.  Honestly, it actually ended up being a good thing because Emmalin ended up having 2 seizures about 1:30pm and she slept until about 5pm...so if we would have done the PT program today, I don't know how much would have been accomplished (it was supposed to be from 1pm-4pm).  

 

         (Emmalin working hard in the OT session 

       this morning with Mrs. Jessie.  She did great!)

All of the people that Emmalin gets to work with up here are amazing!  We are SO grateful for the opportunity to be here!  I'm hoping for a great day again tomorrow in the OT session (we get to start the SLP part tomorrow too), and for a great start for the PT session.  Im praying for no seizures during either of the sessions so that Emmalin will have the opportunity to be as successful as possible with their entire intensive 4 week program!!  I'll keep you posted!

                                 God is good!

Night before Em's Intensive in Columbia

 

Well, here we are again in Columbia, MO with another amazing opportunity to do an intensive therapy session in the OT and PT program.  Just like last year, Emmalin will do the OT program from 9am-11am and then the PT program from 1pm-4pm.  Yes, that's 5 hours of therapy each day (5 days a week for 4 consecutive weeks).  Yes, Emmalin is exhausted afterwards, but she always seems to have enough energy / will power to do it all (I was very skeptical last year about doing all 5 hours but she did great).  

This year instead of working on head and trunk control (which is an area she could still use some help), we decided to focus on transitions.  What "transitions" means is going from standing to sitting, sitting to standing, and taking 3-5 steps (all with guided assistance).  So for the PT program, we will be focusing on those areas.  

For the OT program, we will be working with Emmalin on strengthening her arms so they are stronger to help her assist with stabilizing herself when doing the transition. Emmalin doesn't like to use her hands and so just getting her familiar and comfortable with using them more will be a huge bonus. The other big part we will be working on in the OT program will be holding something in her hands to help with the stabilizing during the transitions.  Emmalin does NOT like holding things in her hands and so this will be a huge challenge.  The last thing we will work on in the OT program (and not necessarily in this order) will be working on being able to reach to get her hand out and onto a surface to be able to have a chance to help stabilize herself.  Emmalins shoulders are very weak and so it is a challenge to try to reach the "target" she is trying to get (although she can do it, it just takes a lot of time and with a lot of assistance sometimes).  

With the SLP (that co-treats with OT a couple days a week), Emmalin will be learning how to navigate through a assistive technology program.  It is through a lot of practice, consistency, and routine that Emmalin will start to recognize words and their meanings (and how to navigate through the communication program).  We will also be doing a little word recognition (building her vocabulary) and possibly even some color recognition too.  

 

          (Sleeping Beauty getting her rest before 

             her 4 week Intebsive Therapy starts)

So as you can see, we have big plans for Emmalin! These goals are all achieveable goals, but some of them are going to be more of a challenge for her than others.  They way I look at it, anything gained from this intensive will be a huge blessing and it will be more progress than we would have made at home (in 4 weeks).  The opportunity to do this intensive program here in Columbia is a HUGE blessing for Emmalin and we are beyond grateful they are giving us a chance to come back!

We are also staying at the Ronald McDonald house again.  This is another HUGE blessing for us!  I'll keep you posted on how the 4 weeks goes!

                              God is SO good!!

Hippotherapy and Baseball Fall 2016

Emmalin got to play in one baseball game at the Miracle League in Springfield and ride Freckles one time at Hippotherapy in September.  

 

Although Emmalin doesn't enjoy the game of baseball in the "typical" way, she does love it.  After Emmalin throws the ball (with the help from her buddies), she will smile (and it melts my heart).  Also, after Emmalin hits the ball (with her buddies), she loves to go fast around the bases.  You can tell she's enjoying it because she starts sticking out her feet and throwing around her arms.  I wish we could have done more his year, but I was grateful she had the opportunity to play in the first game!

 

As far as Hippotherapy goes, I don't have any pictures, but I can tell you that Emmalin started stronger than she has EVER started!  She kept her head up longer and even held her self up with her arms more than what she ever has.  We were also able to go the entire therapy time (which has never happened in the first session).  We will have a couple sessions left when we get back from Columbia, but it was amazing to see how strong she was last week when she got to ride!  We LOVE Dynamic Strides and a of the amazing people there!  

It's been a year since my last post

 

Sorry it's been so long since my last post.  A lot has happened in this last year, so I'll just give the highlights.  

 

We moved into our forever house in December and have been LOVING every minute of it!  Although it is a lot of work, it is our dream home and we are SO grateful for it!  It actually came with a pool and so we were able to get Emmalin in the water a little more this summer.  She can't tolerate cold water temperatures (like below 85 degrees), and so we bought her a wetsuit to allow her the chance to swim in our pool a little longer.

 

 
 

Jarrad is now going to school to get certified as an electrician and so he goes to school after working all day.  (Warning, I'm about to brag a little bit about my amazing husband.) I tell you what, Emmalin and I are SO lucky to have Jarrad in our lives!  Besides the fact that he's a wonderful husband and father, Jarrad works hard from sun up to sun down and never complains.  Also, I have never seen a man be so good at so many things...from music, vehicles, air conditioners, a little plumbing, yard stuff...well I could keep going but I don't want to bore you....ha!  To say the least, Jarrad is a "Jack of all trades" (and Em and I are beyond blessed to be able to call him ours).  Although I worry about all that he has on his plate, he seems to have it all under control.  

 

(We were teasing our niece in this picture about us getting Frostys - we don't normally just take pictures with Wendy's frosty cups...ha!)

As far as Emmalin goes, the highlights are as follows:

~Emmalin got glasses.  She HATES wearing them, but they seem to make a big difference in attentiveness and efficiency with tasks when she has them on.  We didn't have many options when picking them out, so we had to go with the ones that looks the least like Mr Potato Head.  

 

(This was the first picture we took with her glasses on...as you can tell, she wasn't very happy with me or the glasses)

~We have been weaning one of her 4 seizure medications (but VERY slowly)!  The great thing is so far, every single time we have taken the medication down we have seen a cognitive difference and Emmalin also seems to get a little stronger physically.  It's been amazing to see her making progress.  She has more personality, follows direction better, catches on to things quicker, and overall is physically stronger. 

 

 

                             (Seizure smile)

~Seizure wise, she's still all over the place (having multiple a day)...but for the most part they maintain at a tolerable level.  A lot of times Emmalin will smile a lot right after a seizure, so we call them "seizure smiles".  Since we can't initiate a smile with Emmalin, we take what we can get and try to take pictures of her when she smiles after a seizure.  

 

                               (Seizure smile)

~Emmalin over all:

<Physically, Emmalin is growing longer (about 44 inches tall) and weighs almost 40 pounds. 

<The easiest thing for her to do is let us know (in one way or another) when she doesn't like something (or is just mad).  

<Emmalin really likes auto play books on her iPad.  Of course she still likes to "go back" (hang upside down), and she likes to play with toys while "wiggling" in the floor.

<Emmalin continues to do multiple styles of therapies and we are grateful for each and every one of them!!

 

In a nutshell, this was our year.  I promise to try to do better from here on out with updating this blog!!