Journal entry by Racheal Creamer —
I know it has been awhile since we have been on this page. I was locked out and was able to log in using another device.
We have had such a great success rate in which Louie's progress has been. Tomorrow Louie starts his 26 dive. Supposedly from 26 to 30, your suppose reach a big jump in improvement.
Up to now Louie's muscle tone has decreased incredibly. When it would take me an hour to get one knee bend now takes about 5 minutes. His arms are lose and am able start feeling some looseness in his elbows. Louie has been able to lift his arms to shoulder height and a little elbow bend. He has been wiggling his toes and moving his feet. His blinking and mouth/tongue movements has increaased big time.
His suctioning at night has decreased to the point I can go over 6 hours without having to have to suction him.
He also has been making good strong productive coughs, enough to clear his trach. Which months ago is something that seemed so far away.
Also we have weaned Louie off of one of his medications, that can have an effect of clouding his mind. Louie has also been on more supplements that are geared towards brain function and healing. Also now, he is on a meal supplement, not formula, that is geared to help the brain as well.
Today, I'd like to call one of the best days ever. Louie tracked a spinning light toy for a good 15 to 20 minutes. Wasnt perfect but we had a hard time trying to get him to focus on something for a period of time. After that we did a strong hour long pt session. Which I thought would tire him some. Then we had our HBOT dive, he fell asleep for a little while. On the way home, he was focusing on some objects amd react to barriers amd trees close to our vehicle. When we got home, he was super relaxed and acted like he didnt want to get out amd just keep riding around. Then he took a good nap/feed. After that he interacted with his papa (Louis) for a good 15 minutes with a mickey mouse doll amd following his fingers amd reacting to Louis talking to him. We ate dinner and after that Louis and Jen interacted with Louie atleast 45 minutes before he was having a hard time staying awake. Then he interacted with Gentry for about 15 minutes.
This has been such a blessing to see. There has been things that Louie does that seems normal at times. These normal things seemed so far away, that now they are so so special to us.
The fact Louie show us a smile, when he is mad, or uncomfortable. He has a way to tell us he wants a hug. How he wants to plays with toys, and watch his favorite movies/TV shows. It truly feels like we are on the right path of getting our little boy back. We thank God for every moment he has been able to give to us.
We also truly appreciate everyone who has donated or bought shirts.Also we want to thank everyone for your prayers, this boy is proof on so many levels that prayer works. You are right here with us, and a part of our family.
We are still in need of some therapies and supplies for Louie to proceed in his healing. We are having to look at getting an hyperbaric chamber for our house to continue these treatments. Also there are other therapies that we feel like they would benefit the healing process of his brain. They have helped in so many children in Louies position. The therapies are Red Laser light therapy and MNRI.. We are going to start some fundraising as soon as we get done with these 40 dives (about 3 weeks). We have had issues with getting grants for anything due to covid. We are looking at doing possibly a run, some benefit nights at restaurants and possible our own benefit dinner. If anyone has any ideas or places/restaurants that would be willing to donate a part of their profits please contact me at creamerr@hotmail.com ..
Another thing we have discussed as a family is potentially starting an awareness group for families to prevent accidents in our area. There have been to many since Louies (1 is too many).This is too much of a common thing for kids of any age. We also feel that there isn't a lot of knowledge of treatments that our out there to help with these injuries. Most parents have to do the research on their own and that takes time from raising money, or taking care of their family. Time that shouldn't be wasted.
Thank you all again, we couldn't do this with out all of your kindness and support. We love you!!
We have had such a great success rate in which Louie's progress has been. Tomorrow Louie starts his 26 dive. Supposedly from 26 to 30, your suppose reach a big jump in improvement.
Up to now Louie's muscle tone has decreased incredibly. When it would take me an hour to get one knee bend now takes about 5 minutes. His arms are lose and am able start feeling some looseness in his elbows. Louie has been able to lift his arms to shoulder height and a little elbow bend. He has been wiggling his toes and moving his feet. His blinking and mouth/tongue movements has increaased big time.
His suctioning at night has decreased to the point I can go over 6 hours without having to have to suction him.
He also has been making good strong productive coughs, enough to clear his trach. Which months ago is something that seemed so far away.
Also we have weaned Louie off of one of his medications, that can have an effect of clouding his mind. Louie has also been on more supplements that are geared towards brain function and healing. Also now, he is on a meal supplement, not formula, that is geared to help the brain as well.
Today, I'd like to call one of the best days ever. Louie tracked a spinning light toy for a good 15 to 20 minutes. Wasnt perfect but we had a hard time trying to get him to focus on something for a period of time. After that we did a strong hour long pt session. Which I thought would tire him some. Then we had our HBOT dive, he fell asleep for a little while. On the way home, he was focusing on some objects amd react to barriers amd trees close to our vehicle. When we got home, he was super relaxed and acted like he didnt want to get out amd just keep riding around. Then he took a good nap/feed. After that he interacted with his papa (Louis) for a good 15 minutes with a mickey mouse doll amd following his fingers amd reacting to Louis talking to him. We ate dinner and after that Louis and Jen interacted with Louie atleast 45 minutes before he was having a hard time staying awake. Then he interacted with Gentry for about 15 minutes.
This has been such a blessing to see. There has been things that Louie does that seems normal at times. These normal things seemed so far away, that now they are so so special to us.
The fact Louie show us a smile, when he is mad, or uncomfortable. He has a way to tell us he wants a hug. How he wants to plays with toys, and watch his favorite movies/TV shows. It truly feels like we are on the right path of getting our little boy back. We thank God for every moment he has been able to give to us.
We also truly appreciate everyone who has donated or bought shirts.Also we want to thank everyone for your prayers, this boy is proof on so many levels that prayer works. You are right here with us, and a part of our family.
We are still in need of some therapies and supplies for Louie to proceed in his healing. We are having to look at getting an hyperbaric chamber for our house to continue these treatments. Also there are other therapies that we feel like they would benefit the healing process of his brain. They have helped in so many children in Louies position. The therapies are Red Laser light therapy and MNRI.. We are going to start some fundraising as soon as we get done with these 40 dives (about 3 weeks). We have had issues with getting grants for anything due to covid. We are looking at doing possibly a run, some benefit nights at restaurants and possible our own benefit dinner. If anyone has any ideas or places/restaurants that would be willing to donate a part of their profits please contact me at creamerr@hotmail.com ..
Another thing we have discussed as a family is potentially starting an awareness group for families to prevent accidents in our area. There have been to many since Louies (1 is too many).This is too much of a common thing for kids of any age. We also feel that there isn't a lot of knowledge of treatments that our out there to help with these injuries. Most parents have to do the research on their own and that takes time from raising money, or taking care of their family. Time that shouldn't be wasted.
Thank you all again, we couldn't do this with out all of your kindness and support. We love you!!
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