16th Annual Jason Klause Golf TournamentFirst I want to touch a little bit on Emerson's fundraiser this year, especially since the fundraiser is the reason why we are able to do the HBOT. I want to thank from the bottom of my heart everyone that donated, participated in the tournament, or just came to support my angel. I can't express how much that meant to us all. I also want to thank all the members of the Southwestern Sportsmans Social Club. First for choosing to benefit Emerson again this year, how amazing that you thought of us again to help her gain a better quality of life. And second for taking out a lot of time putting this whole thing together. I know it wasn't an easy task and I thank you all from the bottom of my heart for putting your heart into it and making it the best possible.
I believe we had a great turn out even though it rained. Unfortunately we didn't raise enough money to complete a full 40 hour sessions of HBOT (Hyper Baric Oxygen Therapy) but we are planning to continue with the HBOT and just receive as many sessions as the money allows. :)
Dr. Hatch HBOTYesterday July 20, 2012 we visited with Dr. Hatch. It was a two hour meeting so I'll sum it up. First of all he said that he has treated about 35 near drownings with HBOT and it is one of the most difficult injuries to treat. I already knew that but it still made my heart sink. On to better news.... Dr. Hatch said that Emerson is one of the most functioning near drownings he has seen. He said most can't move their head, extremities, or make noises and Emerson does. He said Emerson is very aware just trapped inside her body dying to get out but her brain won't allow it. Again good news but makes me so mad that as her mommy I can't do a damn thing to "get" her out! We continued on with how the accident happened and how long ago. We also discussed other random things like who we were referred by, how angry he gets to hear neurologist talk against HBOT, & how he's treated he's whole family. Even his two sons that had a concussion. He also told us that most near drownings come in striving to be where Emerson is awake, aware, and moving. But since Emerson is already there he can't imagine the progress she can make with this treatment.
After all the talk he did a full physical on Emerson. First he started with her ears and knew right off that someone uses q-tips in her ears. lol. Guilty. I am a big fan of q-tips and using them to clean out kids ears, I hate seeing their wax. lol. But apparently all it does is shoves the wax deep into the ear canal. So after he made me feel horrible for that, lol, he continued the exam. He looked at her eyes but she really wasn't having it, she kept them shut pretty tight. So we moved on to sitting her up in my lap and him testing her reflexes in her legs, good reflexes. Testing her touch sense on the bottom of her foot, good. He also checked for clonus, which I knew she had but only gets maybe one every month if that. And he showed that she does have it but more in the right foot not really at all in the left. In case you don't know what clonus is it's a continuous rhythmic reflex tremor. Again something I already knew but glad to hear I was right. Then he came back up to the eyes. She was ok with him looking now. He noticed that her eyes do dilate but it's delayed and he said that's pretty typical. He then tested her vision. He moved from the right to the left side of her first calling her name to see if she would look. The first time he did it she took about 15 seconds to look at him then he started showing her the light again from the right side then to the left and it took her about 5 seconds to look from right to left at the light. He was so amazed yelling "Great Job Emerson! *giggle* gosh she's just so smart" I have to be honest made me feel so great! I know she's smart and I KNOW she's in there and shes dying to come out. After that he went to her hands which are kind of bad. Her tone is intensified there and her thumb stays pretty much nudged into her plam or in between her pointer and middle finger. She does have reflexes in her arm but they aren't as prominent as in her legs. That's ok with me it's something we already knew. He was done with the exam and we began talking again. Basically he said he won't treat Emerson unless she completes the full 40 sessions because that's the amount needed to see a difference.
Next he talked about what goals we have for Emerson. Now some of you might not understand our goals and why we don't have others in place, and all I can honestly say is once you've been thrown this and been told your daughter will never walk, talk, move, eat, and do basic daily functions ever again you start to rethink what really is important in life. With that said these are the goals we gave him.
Yes Emerson communicates in her own way but I'd love for her to get across to us and others what's on her mind and not just the basic needs like hungry, hurt, and sleepy which she communicates now with crying. I don't care if she communicates via sign language, "baby talk", or even via an i-pad that puts her thoughts into sentences read out for her. I just want her to communicate her thoughts and feelings.
2. Seizures decreased or gone
With her having seizures it interrupts all that she's trying to do. So not only will she be able to function more without having seizures to interrupt her but she'd be able to get off so much medication and be "more" awake! She's on 4 seizure medications, just imagine if you were on all that. It makes you drowsy, inpaire judgement, dizzy, and blurred vision. Just read all the cautions. It's crazy. So that would be awesome if she could get off all or even some of the medications.
And that's basically all our goals for now for Emerson. Hopefully we'll achieve both but even one would be great! I know some of you may be wondering why walking isn't on our "wish" list. Well we honestly don't care if she never walks again. I can see every ones mouth dropping now. lol. But think about it how many people out there don't walk and live very normal and happy lives? Exactly! That's how we feel. She can live just as normal as a life as the next person in a wheel chair.
We spoke a little about the financial aspect of this whole thing and then about when we can start. He would like us to begin August 10th because that's when he returns from a trip. So it's set Emerson will begin August 11th and go for 40 sessions. If we see improvement we will be thinking about doing another fundraiser to do another 40 sessions. So please continue to PUSH for Emerson as her journey is not yet over, she's still fighting to have the best quality of life possible and her family is behind her 100% doing the same!
This is the chamber Emerson will be in when the sessions start. There's a tv in front and speakers on the inside. :)