Monday, May 31, 2010

Were Home!

Our group
Jonathans pal Ben, Jonathan loved this boy, he was a pretty cool kid!!

Where the heck did time go, its almost June!!
We finished our last 20 dives and it went great. Jonathans muscles are looser and he now says papa! So far he can say, hi, I love you, bubbles, five,and papa a very random mix except papa he loves saying that! I was skeptical about HBOT (hyper baric oxygen treatment) and how it would work with Jonathan and if it would even work. To tell the truth I was scared to death after his first 2 dives and thought we were going to pack up and leave because he had a blue spell, I was scared to death! I talked with my new friend Jen (we have known of each other via web for the last almost 3 years when we were both preggos with our boys)and she said to stick it out and she would pray, well thats it we stayed we seen results and I am so happy we stuck it out! We didn't really see great improvements until the second half. He was always happy EVERY day never mad, never had super stiff muscles, and is using his left arm so much more! I'd like to use someone else's quote because a lot of people can't believe what oxygen can do for you. "Sometimes GOD thinks outside the box"! So I am a believer of o2 therapy, so much that we may go back in September! Jen and I
We met some really great people, and actually Jen and her family will meet up with us in August for some whitewater rafting, I can't wait!
Here is a couple shots of the trails we took while in N.C, they were on the very tip of the mountain!

On our way home we stopped in Kentucky, Cumberland Falls area and took both kids horseback riding I wasn't nervous at all until I actually was on the horse then I told the guide to keep the money and we would go back! He said y'all will be fine don't worry so I continued the ride with Leah and my dad with Jonathan, I wasn't at all calm until I seen the barn again on our way back, WHAT WAS I THINKING! It went fine both kids LOVED it but my crazy mind kept thinking what if, and that in itself is scary! Then we went back to the hotel to find a tick on my belly, YUCK, GROSS and FREAKY!! I was trying to stay calm but I was screaming inside! The receptionist was kind enough to come down and gradually pull the ugly little rodent out of me, ugh! I couldn't sleep a wink I kept looking at the kids checking them out, threw out all the clothes we wore that day and bought new shoes, I was freaked! We headed home the next morning and we were out of the hotel at 1030am a first because we never get out before noon I think not sleeping and the thought of ticks being all around me had something to do with it!
So we are home now and Jonathan is doing great but me trying to get back in the swing of things is hard! Just a couple weeks and we are going on a family vacation with our friends!

Thursday, May 13, 2010

Half way done, 20 more dives to go!

O.k so we have been here for 20 dives we have 20 more dives to go! Jonathan is a champ he is doing really good actually every morning I ask him "do you want to see the kids" well no brainer he smiles and is ready to go! Every morning for the last 4 days he has been doing AIT therapy before and after each dive so at the end of the day he is so tired. He will continue the AIT therapy until the end of next week.
after his long days!

I do believe we have seen some improvement with Jonathan's muscles they are more relaxed he is not as stuck to the right and I think his brain to muscles may be communicating better. I see him look at his arm and you can see him think about what he is going to do with it and since his muscles are more relaxed his movement seem smoother.

I can't wait to see what 20 more dives are going to do. I keep hearing from other families the o2 really helps the kids eyes so I guess we will see (no pun intended)!
The oxygen chamber where 4 adults and their child sit in and when you get to pressure the kiddos put on the hood as Jonathan has on!

We have went on some walks in the mountains and hopefully this weekend, we only get Sundays off, we will go see Grandfather mountain with another family. Today we are going to a dinner with the other families. This past Tuesday we went with Ben and his mom Bonnie to a circus but when we, Bonnie and I thought circus we thought elephants big tent but what we got was a lady that did face painting, dancing and concession and a guy that was a clown, sponge bob, a snake handler and concession. so a two man show but there were 3 dogs that did some tricks too but it was the company that was fun. I think Bonnie and I laughed more at how bizarre this circus was than anything! So we are having fun and staying busy.

On another note Leah is doing great too. She turned 6 months old last week she is ALMOST to crawling and eating more than I can make, so I think with the frozen supply I may only get 8 months of b. milk in Leah I really wanted a year but if I can make it to 8 months I will be so happy! When she is out of b.milk she will go to goats milk since it is so easy to digest and it just plain better for us!

Thursday, May 6, 2010

Miracle Mountain (HBOT)

What a beautiful state, North Carolina is rich in mountains and the air is so clean the people are a lot sweeter, nicer and respectful! The drive was uneventful besides taking the road they warn you not to take because it is full of sharp turns high altitude and some almost one lane roads along the mountain. This would be my fathers idea he thought it would be cool to experience it, uh ya real cool! Well the center is not what I expected but hey its not the outside that counts its what is inside, right?! The house (trailer) we are staying in is o.k but when they offer you mouse traps when you first arrive, I freaked to the point I was going to pay for a hotel but since we are high in the mountains it would be a 40 min ride each way! So I have stuck it out and this is day four oh I am such a city girl! The weather is phenomenal warm days cool nights I am not complaining.

Jonathan is doing great his very first dive went very well. I think he was wondering what the heck this bubble on his head was! The second dive went o.k he freaked out a little towards the end and had a blue spell(breathe holding) but after that did fine, just freaked everyone out! Second day went awesome for all the kids in our group and yesterday was an off day for Jonathan but he did well he actually fell asleep for the afternoon dive. Today we are moving from the 8am group to the 10am group and I am sad because we met two really cool kids but we can still hang out after sessions! So this morning we will be with a different group the plus is Jonathan will be with his "earthly twin" (thanks Jen) Like I have posted in the previous post her little boy, Liam and Jonathan are very alike so that will be nice to be with them. I haven't seen really any improvements yet except that supposedly oxygen is a natural laxative because Jonathan has not needed anything for his bowels I feel bad because its really enclosed and Jonathan doesn't have the most beautiful smelling poo! But because we are all in this same boat just some kids are higher functioning but some are a lot lower functioning everybody understands! So continued prayers would be great!

I really do love being here its like a whole new world, a world where everyone is "special" there is no staring, no name calling, no use of the "r" word just a bunch of kids that all want to play together and parents that can talk to each other and everyone can relate to being to tired, not knowing if we are doing enough, what does the future hold for our children and how far do you go for your child and when enough is enough! You know this therapy is for Jonathan but I think I am benefiting from it also. I am the only first timer everyone here has done this before and have seen minor to some pretty incredible improvements. Yesterday while we were in chamber I watch a mom singing to her daughter which she does every dive and her daughter has visual impairments as well as infantile spasms or seizures and this is their second time doing o2 therapy this little girl has been seizure free and yesterday while she was singing the little girl seemed to look at her momma and she was smiling and laughing it was tear jerking to say the least. There are a couple little boys who are autistic and are doing fabulous actually the parent to one of the boys was in my group and this is their second time and are staying 2 months for back to back therapy because they have seen great improvements!

Well I must go to our session please pray we continue to have successful dives!