4th Annual Journey of Hope Benefit

This Friday (October 18th) will be our 4th Annual Journey of Hope Benefit.  As always we have had SO many people help in so many ways to make this possible.  The people at 320's Club (our venue) have been amazing and so has our band that will be performing, Machine Gun Symphony.  We would just like to say THANK YOU TO EVERY SINGLE PERSON THAT IS HELPING IN ANY WAY!!   We can't put into words how grateful we are for everyone being so generous with their time and donations!!  Thank you from the bottom of our hearts!!  Here is the flyer in case you will be able to make it on Friday to the benefit.  Thank you in advance for every single person that has helped make this benefit a success!

We hope to see you on Friday!

                                                                 God is Good!

Back Up and Running

Sorry it has been SO long since I last posted.  As always, it has been busy on so many different levels!  Here is kind of a "run down" on how things have been going for Emmalin so I can catch everyone up :)
 Since my last post in March, I am happy to report that things have been a little calmer for us (at least I think they have).

~Emmalin made it through the summer with minor ear aches and colds (which is fantastic).  The only thing that isn't that great is at some point during all of this Emmalin started consistently having distressed breathing with every single cold now :(  We just watch her pulse ox and make sure it stays at an appropriate level.

~On July 4th, Emmalin got to do sparklers for the first time.  Honestly, I don't know why I didn't think about them before, but Emmalin seemed to really like to look at them and so we will be doing sparklers from now on :)

~Some point in the middle of August Emmalin was diagnosed with pneumonia again.  To be honest the doctor said he wasn't completely sure if the sounds were all coming from upper respiratory or if it was in her lungs and so she was treated for pneumonia (and an ear infection).  Emmalin ended up getting sick again with a different round of viral stuff about 9 days later and so this was the cold that I felt was NEVER GOING TO END (but of course it did finally).

Our Sleeping Beauty

~September 11th, Emmalin had another cold (with distressed breathing) and her pulse ox dropped again (the only other time this has happened was back in March).  She was admitted back in the hospital (this time at Cox South) because she needed oxygen.  Emmalin ended up being in the hospital for 5 days this time.

Em the day she was admitted :(

~September 12th, while we were in the hospital, Emmalin had a huge coughing spell and ended up aspirating for the first time ever :(  So from this moment in the hospital Emmalin was then treated for aspirating pneumonia (it went in her lower right lung).  This was a huge blow because they say in the CDKL5 world that once they aspirate, it makes it easier for it to happen again (big sigh).  Emmalin is doing better now, but it took her body about 2 weeks to recover after being released from the hospital.  Honestly, there are still some small ways that her body is still weak, but all in all Emmalin is back to her "norm".


~When Emmalin was released from the hospital, we then got oxygen for the house.  No, Emmalin did NOT go home on oxygen!  But with winter coming on they (Emmalin's pediatrician) just thought it would be a good idea for us to have some at the house in case Emmalin's pulse ox drops quickly again (like last time).  As much as we hope not to have to use it, if Emmalin does get in situation where she is sick and her pulse ox drops again, by having oxygen at the house our hope would be that we could keep Emmalin at home instead of having to take her to the hospital.  Emmalin gets sick SO easily and

Our New Portable O2 for the House

quickly!  We just figured that (as I said before) with the winter coming on (and the fact that Emmalin had some type of pneumonia TWICE within about a month and a half)  we figured this was probably a smart move.  If I'm being honest with you, I would have to say that getting oxygen at the house was a very bitter sweet thing for me.  As grateful as I am to now have the oxygen at our house in case Emmalin needs it, it was a hard blow for me.  I know that sounds ridiculous, but it's just another piece of equipment that will forever now live at our household.  For me oxygen was just something that I was hoping wouldn't be "living" at our house for a VERY long time... but as I said, I am VERY grateful that we have it now for if Emmalin's pulse ox drops again!


~On a very positive note, the Clever City Park got a special needs swing!!  This may not seem like a very big deal, but it is HUGE for us!!  Emmalin loves to swing :) This means I don't have to drive into Springfield anymore so Emmalin can go swing at the park.  We are SO grateful for the City of Clever and for them seeing the need for a special needs park in our little city!!

Emmalin LOVING her time swinging
at the Clever City Park :)

Therapy-Wise:
Emmalin has been working very hard to start gaining ground physically and cognitively.

Em working hard at Vision Therapy

Cognitively we feel Emmalin is starting to show us that she understands more (which is AMAZING).  Physically, I feel like Emmalin  has lost some ground in her shoulder/arm strength, but we are working on it!  Of course we are still working with Emmalin on head and trunk control.  Emmalin actually had the opportunity to start back up Hippotherapy (where she rides the horse) again last week and she gets to start back up water therapy on Halloween.  We are SO excited for Emmalin to have the opportunity to do these 2 therapies!! I have been told that Hippotherapy and water therapy are the best 2 therapies that you can do for a child who has CDKL5.  Altogether Emmalin (at the moment) therapy-wise does PT, OT, and Speech at the Meyer Center and also at her school.  Emmalin also does Vision therapy 3-4 days a week.  Since all of Emmalin's major surgeries are done for a couple of years, me and Jarrad truly feel that this is Emmalin's time to really have the opportunity to gain some ground strength-wise (and cognitively), and so we are trying to give Emmalin every opportunity that we can think of to help her.

Em and the gang at Hippotherapy

Well...all of this pretty much gets us back up to date on everything.  I will try not to wait as long before I make my next post.

                                                                   God is Good!