Christmas Party

Brayden had a good time at his Christmas Party yesterday. He seems to enjoy going to school. He is all smiles when you ask him anything about going to school or riding on the bus. Here is a picture of him at lunch after his Party.

We are going to see Santa today! Hope everyone has a good Christmas!

Riding the Bus

First Day of School

Brayden's first day of school was today. He did very well and loved being around the other kids. He is in a very small class being the 5th student in the class. He has 1 teacher and 2 para pros in the class. He is the only student in his class with a wheelchair but there are a few other students with wheelchairs at the school. He had a blast when they went to to the gym. Another class was also playing in the gym and he had about 10 little girls pushing his wheelchair around the gym and singing songs to him. I stayed with him all day and we left a little early because he was worn out. He will be riding the bus in the morning. Hope that it goes well. We are hoping that he will stay well and be able to go to school more often than not. This is the last week before Christmas vacation so we will see how everything goes. Hope my big boy has a good day at school tomorrow.

Braydens 3rd birthday party

We had Braydens 3rd birthday party today at Kangaroo Jakes. He had a blast despite being a little sleepy. Here are some pics from the party.....What a sweet smile!

Feeling Better Finally

We are finally feeling better after being sick for almost a month. Keeping our fingers crossed that it stays that way. We had a great Thanksgiving and are still working on left overs which we are pretty much done with now. Brayden enjoyed a few bites of some Thanksgiving dinner himself. He hasn't been doing very well with swallowing since being sick. We put up the Christmas tree and Brayden loves it. He loves the lights. Brayden's birthday is sneaking up on us. He will be 3 on Dec. 8th. When he turns 3 Babies can't wait program (they do all of his therapies) will no longer be seeing him and he will be transitioned into the school system. Since he has special needs he can start pre-k when he is 3. We have decided to send him to a special pre-k where he can get some therapy there and also be around other kids (he will love that part). Hoping that he can just stay well enough to go school more often than not. Hopefully he will be starting in Jan after Christmas Break. Not much else going on here. Getting ready to get back to therapies after being sick for so long and catching up with missed doctors appointments.

Have been feeling too crummy to post lately

Wearing a mask at doctor's office so I don't pick up any other sickness floating around there.

Brayden is sick again this is the third time being on antibiotics since we got back from our trip to Miracle Mtn. Recurring Strep and sinus infections. I don't know how someone so small can have so many secretions. We are hoping this time the antibiotics work. Brayden has been fussy and coughing, coughing, coughing. But, 1 good thing is that his lungs sound clear so, it is all upper respiratory stuff.

I have also been sick for about 1 month. I went back to the Dr. today and found out I have pneumonia. Between me and Brayden one of us is always coughing. Nothing much else has been going on beside us being sick. We really haven't gotten to do any therapy or much of anything. Hope we are feeling better soon especially for Thanksgiving. Evan and Kaitlyn are out of school all that week so got to get feeling better soon!

Happy Halloween

Glad to be home

We are glad to be home! We have been home since late Tuesday night. We drove home right after our last session. We had a pretty good trip home except Kaitlyn getting car sick from all of the curves going through the mountains. The kids were out for fall break so they came up to see us and stayed for our last days at Miracle Mtn. We have just been getting some rest and getting things in order here since being gone for over 3 weeks. We had a good trip this time. Brayden was very good during the sessions and he did not get sick this time. He was glad to be home and so was I. He was excited to see peanut and his nurse Debra. It's so good to be home. We have already seen some small changes going on with Brayden too. This was our 3rd time doing 40 Hyperbaric oxygen treatments. He has been using his hands more and moving his fingers a lot. He has been more verbal too, not really saying anything but making lots of sounds. It doesn't sound like much but, to us it is. We hope to see more.

HBOT going well

We have done 22 hbot sessions so far and everything is going well. Brayden has been excellent. We both have both been really sleepy and sleeping a lot. We have met some other very nice families while here and some really awesome kids. We started doing the Oxy-Sound Harmonics (Auditory Integration Training) this week. We are at the center for our 1 hour session of hbot and then 30 minutes of sound; we do each one twice a day. Brayden has been making some more sounds than usual, no words but a lot of jabbering going on. Brayden has enjoyed going outside in the afternoons and he enjoys seeing the cat that has been coming to visit us outside. We cant wait to go home. We miss being home and Brayden misses his Bubba and Sissy. Here are a few pics that we have taken.

Doing HBOT at Miracle Mountain

We made it to Miracle Mountain. We had a good trip with Brayden sleeping most of the way here. He was entertained watching his Nick Jr. cartoons when he wasn't sleeping. Sure beats the days of when he wouldn't even ride in a carseat without trying to stand on his head. We are doing another 40 sessions of HBOT here at Miracle Mountain. Other than being worn out from packing the whole house...lol, driving here, unpacking the house and then going to walmart for groceries, we are doing good. The weather is much cooler here though, we had to wear our jackets tonight. Brayden has been in a good mood all day and didn't even fuss while we were at Walmart. I will update with some pics as soon as I find where I put the camera. We hope everything goes well on this trip. We hope the 3 weeks and 2 days we are here flys by. Hopefully Evan and Kaitlyn will get to come visit us.

Totally Fed Up

Brayden's nursing hours have been decreased again despite my appeal to keep his hours at what his pediatrician has ordered 56 hours per week. I don't know where these people get their information on how to determine hours of care needed for children but they are totally wrong! How can they determine that he doesn't need nursing care when they have never seen him or evaluated him. They are stating that since his condition is stable they can decrease his nursing care hours. Anyone who has spent 30 minutes with Brayden knows he needs nursing care because caring for him is mentally and physically exhausting not to mention his rigorous care schedule. Brayden has to be monitored 24 hrs a day, how do they expect the parent to be alert 24 hrs a day to properly care for their disabled child? I have no family here to help out with Brayden and my husband has to work because I cannot. So all of Brayden's care is left up to me. He even has to be monitored at night because of his sleep apnea and he likes pulling his oxygen off. There is no one else who can provide the care he needs due to his g-tube feedings and oxygen use so he can't go to a daycare or babysitter. So thankful I don't have to work because I have no idea how he would be cared for with only 24 hrs of nursing care allowed per week. I guess that I had better get use to not sleeping. Praying that I can remain alert enough to properly care for him. Our health care of people with disabilities in this country is a joke. Ha!Ha!

Frustration

Why do I have to fight for everything Brayden needs? I have appealed Braydens nursing care hours being reduced and they sent a letter that had to be received back by a certain date. I sent them the required information and had it next day mailed with signature required. Now they are saying that they never received my additional information. I received a letter from them yesterday Sept. 9, stating that if I wanted to file for a hearing I could keep my nursing hours the same until the hearing was heard but I had to have a letter sent to them stating this before the effective date of when his hours were going to change. Well, his hours were due to be changed effective Sept. 4th. So how can I send a letter for this when I dont receive their letter until 5 days after when the hours are supposed to change. This is just how the medicaid system works. They try to get out of providing services because of techincal stuff like this. I am seriously fed up with the medicaid system!
I would like to go leave a bunch of kids with serious brain injuries in their office for a week and see how well they deal with everything....lol. I have contacted USPS and they are sending me conformation of where the information I sent was received and signed for by someone at their office. Imagine that......it was received and signed for by their office on the day it was supposed to be there.

Brayden has also been out of his prevacid all week because it has to be prior approved because it is not on their list of appproved medications. He has been on this medicaiton for over a year, why do I have to get this prior approved every six months? It takes 1-2 weeks to get it approved. His medical condition has not changed any and he will be on this for a long time. Why waste everyones time by doing this?

Things that really get me are the Georgia Pediatric Program, which provides skilled nursing care in the home. It states that there is no evidence that the current nursing hours are medically necessary to correct or ameliorate the child's medical condition. I am not aware of anything that will correct an anoxic injury to the brain. So I hope they are not expecting skilled nursing care to fix his brain injury. They state that since he has had no hospitalizations that his condition is stable and therfore nursing hours can be reduced. Just because he hasn't been hospitalized doesn't mean that he is medically any better. What about the 50 + times we went to the doctors office? The doctors try to keep him away from being hospitalized because we can do almost everything at home that they do at the hospital. They also state that their program is a weaning program and not for permanant placement. Where is the program for children who will need nursing care for the rest of their lives? Children who have permanant injuries that cannot be corrected. Where is that program???? It does not exist! So every 3 months you have to go through this!!! This is so insane.

Not to mention to add to my frustration, it took me 30 minutes to get an appointment with the rehab doctors at the Rehab Clinic at CHOA Scottish Rite. I got transferred 5 or 6 times, hung up on twice, transferred to the outpatient therapy, and finally put on hold for eternity. And you may as well forget ever getting in touch with one of the doctors there because no one ever calls you back!

On a good note Braydens chest xray was good. He still is feeling bad with horribe congestion and coughing. I dont know how someone so small can have so many secretions, and so much stuff to cough up.

He has been doing well with PT and he is worn out from Mrs Barbara working him today. We are looking at getting a new seat for Brayden. The feeder seat we have for him now is beginning to get small. So I think a new seat will be a good Christmas present. Just wish they weren't so exspensive. We also are going to be getting a new stroller because he hates his wheelchair but will ride in his stroller without any problems. So if anyone has any suggestions on a good stroller for bigger kids, please let me know.

Hope everyone has a good weekend.

Guess What............Sick again!

Brayden has been sick with strep this week, coughing, congestion, and fever . Evan has also been sick with strep and flu symptoms. I have also been sick with congestion and flu symptoms. I swear we have the swine flu, but the doctors didn't even check for the flu. Hopefully Kaitlyn doesn't get sick. Not much else going on here except for us trying to get well. Hope everyone has a Happy and Safe Labor Day!

Brayden is Sick Again

One of my favorite pics of Brayden


Brayden is sick again, it never seems to end. Coughing and congestion and of course his storming episodes. He always seems to have the storming episodes when his body is under stress. It wears you out just trying to hold him because he is constantly stiff and rigid and trying to stand on his head. He has been very fussy and just wants to be held. Thank god for the nurses right now. But, like everything else that is good that will soon be cut back on by medicaid. We will only be getting 24 hrs per week of nursing care after we come back from North Carolina in October. They state because his condition is stable with no recent hospitalizations that they can cut back on his hours. We are going from 56 hrs per week to 24. Despite the fact that there is no respite care or medical daycares available for him to attend.So much for Obama's year of community living. This is not just with Brayden; state wide in GA skilled nursing services in the home are being cut for children who participate in the GAPP program. The Georgia health partnership determines the level of care even though they have never seen the child or assessed them. They ignore Doctors orders for nursing care and they give you what they think is best. They are probably some pencil pusher who has never even seen a sick or medically fragile child. I am just fed up with the whole healthcare system period! It makes no sense to me. Who comes up with these ridiculous standards of care? Some moron who has no idea whatsoever about the level of care and therapies required for these children! This is not just for Brayden, as a pediatric home care nurse for years, I have seen how horrible the system is. My sympathies to any families having to deal with a child or loved one and this horrible system we call healthcare. Here is one example of how ridiculous the system is....Brayden has sleep apnea and wears oxygen at night, he has to wear an oxygen monitor because his oxygen saturation levels drop frequently due to his sleep anpea. Medicaid pays for his machine that monitors the oxygen saturation levels but, not for the sensors he has to wear in order for the machine to work. I think that if a qualified doctor orders something for you that you should be able to get what they have ordered, not have some dimwit tell you that it is not covered especially when it is medically necessary. We desperately need some kind of healthcare reform. Ok, I am stepping down off my soapbox now.

On a good note, Brayden will be starting a special needs preschool when he turns 3. We have a meeting today with the school to go over everything. Now we just have to figure out what to do about his wheelchair because he hates it and will not sit in it. We recently got the stealth i2i headrest put on it because his head was so floppy with the other one and he kept getting his head stuck under the headrest. He absolutely hates his wheelchair. So if anyone has any ideas, he has a zippie iris tilt in space wheelchair. I will try to update soon.

Braydens 2nd Annual Benefit Ride

I have been so busy with school starting back this week, I haven't had time to update. Braydens ride on Saturday Aug 1st was awesome. We raised $3,246. Thanks to everyone who came out to support Brayden and a big thanks to our riders. We had 61 bikes in the ride and lots of passengers and a pretty good crowd of non-riders. Thanks to the bands who played Joint Effort, Guvmunt Cheese, and Bones of Bastogne. Brayden had a good time at the ride. We appreciate everyone who came out and suffered in the heat to help support Brayden. Thanks to everyone who helped out with Braydens ride. Thanks to my Mom, Patti, for organizing everything and getting it all together. Thanks to Walgreens for allowing us to host the ride there. Thanks to Cornerstone Community Church for the use of their tables and chairs. Thanks to Ringgold City Police and Murray County Police for escorting the ride. Special thanks to Road Rash Magazine for posting pictures of Braydens Ride. You can check out more pictures (over 500 pics) at roadrashmag.com under event pics for 2009. We will be going to Miracle Mountain for more hyperbaric oxygen treatments in September!

Sick again

We should have figured Brayden would get sick before the Benefit Ride. He has cough and congestion....Imagine that...once again! Poor baby seems to be constantly sick with coughing and congestion. It is just so aggrevating to almost never have him well. He gets better sometimes but, he is hardly ever well. We have also been battling him staying up all night. We have tried everything and nothing seems to work to get him on a schedule. He is still staying up until 3 or 4am. Even if he gets up early he is so worn out he takes more naps and still stays up. I am so tired from staying up all hours of the night and not getting any sleep. Got to figure out something! Looks like there is a chance of rain on the day of the ride. Praying it doesn't rain that day! There was a change in the bands coming. The only band we are sure that is coming is Joint Effort. Maybe another band will be coming but, not sure of that yet. We can't wait for the ride and we hope Brayden is feeling better by Saturday. Hope to see everyone at the ride!

Update

Brayden has been doing good,and is feeling much better now. We have been working on Braydens Benefit Ride. We now have 2 bands that are coming, Joint Effort and Mountain Cove. We have almost everything ready and have given out tons of flyers. We hope to see everyone at the ride. Even if you don't ride a motorcycle, come out and have lunch with us. Listen to some music. We have more tables, chairs and some tents this year so there will be some shade. Brayden had OT and PT today and did very well. He got to ride on a tricycle with lots of help from his PT. He was all tuckered out after doing both OT and PT today and took him a good little nap. Brayden got his quilt made from www.lovequilts.org it is so cute done all in Cars. It goes perfect with his room. Thanks to all of the stitchers at love quilts for making Brayden such a nice quilt.

Happy 4th of July

Brayden has been sick with coughing and congestion. He seems to not be able to get well here lately. He will get a little better then really sick again. We went to the Dr. today and lungs are clear but started him on an antibiotic. He is really congested and wheezy. We are continuing to work on the benefit ride. We have given out a ton of flyers. Hopefully we will have a good turn-out. Hope everyone has a great 4th of July weekend.

Braydens 2nd annual Benefit Bike Ride

Scroll down to bottom of page to view it larger!!!

2nd Annual Benefit Ride for Brayden

We are working on Braydens 2nd annual benefit ride and we have set a date and place. August 1st, registration starting at 10 am, at Walgreens in Ringgold, GA. (same place as last year). They have a pretty big area and things turned out well last year. We are still working on alot of things.

We would love to have a live band this year if anyone knows of any bands that would be willing to help us out, just let me know. We are in need of donations of things to giveaway and things to raffle off. So if you know anyone or have anything you want to donate just let me know. Anything is appreciated no matter how small.

We will have a 50/50 drawing, raffle, and lunch is provided for the riders. We hope to have a bigger and better ride this year. 43 riders last year and we hope to have more this year. The cost is $25 for riders and $5 for passengers.

Brayden will need ongoing therapies and treatments for the rest of his life due to his brain injury. All money raised will be used for Braydens treatments and therapies. We have come a long way in little over a year. Brayden went from being a vegetable to being able to smile and laugh now and is even starting to try and talk. He was able to get rid of his tracheostomy and he is even beginning to be able to try and eat small amounts of food by mouth. He is so much better now thanks to everyone helping to get him the treatments and therapies he needs. None of this would have been possible without everyone's help. We hope everyone continues to pray for Brayden and we thank everyone for their continued support.

No sleep for Brayden

The sleep study went about the same as the other one. Brayden did not go to sleep until about 2am. and the study is over at 5am so they really didn't get an accurate test done again. But, we are not trying that again. He just can't tolerate being hooked up to all of those wires. We had a great Memorial Day . Curtis got the addition to the deck finished and we got a new swing to go outside. We had a cookout with family and the kids had a blast swimming. We did have some excitement when a big snake was found crawling across the road into our yard. Brayden has been doing good. He has been tasting some foods. He doesn't really like anything in his mouth though. He has been babbling and trying to talk more now. He really isn't saying any words yet but making lots more sounds now. We are hoping all this rain will go away and it will warm up so Brayden can try out the pool.

Feeling Better Now

Well we have finished up all the antibiotics and Brayden is feeling much better now. We have been dealing with diarrhea and an awful diaper rash from the antibiotics this week. Brayden went to the pediatric ophthalmologist to have his eyes checked this week. They said that he can see but they couldn't tell us how much he can see. They said that his eyes looked good and he did not need glasses. That all of his eye control problems are from his brain injury and nothing wrong with his eyes. He still has alot of the upward gaze but his eye control is getting much better and he seems to be focusing on things more. He definantly understands some of what you are saying to him too because if you say something funny to him he will laugh. We are going for another sleep study Saturday night since he didn't sleep on our first try. We hope he goes to sleep! Not much else going on with Brayden right now. He has been enjoying the warm weather because his nurse Debra spoils him rotten and takes him to the park everyday. He loves to be outside. Finally the last day of school is here. The kids are excited and Brayden loves them being here to aggravate him. We are finally getting the pool fixed after the liner got a hole in it. We may try and see what Brayden thinks about getting in the pool. I think he would enjoy some water therapy because he really loves taking a bath and playing in the water kicking and splashing. I will try and to post some pics up when I update on the sleep study. Hope everyone has a great Memorial Day Weekend.

Finally an update

A few pics from Our trip to Miracle Mountain




Brayden has been sick, ear infection and strep throat. He has been fussy and staying up all night. Our nursing hours decreased to only 8 hours a day since Brayden no longer has his trach. We are having the nurses come from 3 to 11 because he has been sleeping pretty well until now being sick. Kaitlyn has also been sick with strep. Not much else going on. Just getting started back with therapies. Starting to feed Brayden some tastes of food by mouth, which he does not like. But hopefully he will get used to it again---it has been over 1 year since he had anything in his mouth. We had a good trip to Miracle Mountain in NC. 3 weeks seems like forever being there. But Brayden did good with all of the treatments even though he was sick with coughing and congestion about the whole time we were there. We enjoyed meeting the other families there and thank everyone for the great job they are doing there. We have decided on a date for Brayden's second benefit ride for August 1st. The money raised will be used to help Brayden get more hyperbaric oxygen therapy. We have seen great results from the treatments so far and want to continue them. So any help with the benefit ride is greatly appreciated. I will try to keep updated a little more now that things are back to normal.

Halfway done with HBOT

We have done 22 treatments so far and have 18 more to go. Brayden has been doing well in the hyperbaric chamber. He has had a little bit of a cough but otherwise he has been well. We have been tired and hungry from doing the hbot, but things are so much better this time without having to deal with the trach. The weather has been cold and rainy most of the time but it was nice and sunny today. We hope it stays that way. We had a great Easter, Curtis and the kids came up and nanny and pawpaw were here too. Kaitlyn hunted eggs and we ate a good dinner. So everything is going good for now.

Doing HBOT at Miracle Mountain

We have done 4 sessions of HBOT so far. It is snowing here and it is cold. We have gotten 5 inches or more of snow. It has been snowing all night and all day. Brayden is tolerating the HBOT very well this time. We are just sittin around watching the snow being bored, but glad to finally have internet connection! Kaitlyn has been playing in the snow all day and is so excited and wild because we hardly ever see snow. Brayden has been good and smiling and laughing all the time. We hope it warms up soon.

Brayden has been sick and was in the hospital Thursday and Friday. He has the flu and was dehydrated from vomiting. He has a horrible cough and really congested and really feels crummy. He is starting to feel some better now but is still pretty sick.

My Little Prince

Glitter Graphics