Pray For Brayden

Yeah! No School

2011-05-26T16:19:00.000-07:00

First week of no school and Brayden has to be sick. He is feeling better now but still has coughing and congestion. We were at the lake Sat and Sun and he had a good time despite feeling so crummy. We are going to have some fun this summer and sleep late every day!

We have started back on Baclofen along with the Artane to help with his tone. I missed our appt with the rehab clinic and the next available one isn't until July 20th. We are going to see about getting botox again in his hamstrings to help with his tone. Waiting 2 months for an appointment aggravates me.

Our nursing hours are being whittled down to 16 hours a week thanks to GAPP who says he doesn't need nursing care. Yeah, you come take care of him for a day and you'll change your mind really quickly. Not even going to get started on that subject.

We hope to have all the sickness out of the way! We are ready to have some fun in the sun!****Happy Summer******

F*** You GAPP

2011-05-12T07:05:00.000-07:00

The whole medicaid system disgusts me, especially the Georgia Pediatric Nursing Program. GAPP is Georgia Medicaids medical service program for in home nursing care. Since Brayden is no longer on oxygen he does not qualify for home nursing care. Really??? A quadraplegic with a feeding tube, who has cortical blindness, can not talk, and the cognitive development of a 3 month old does not qualify for home nursing care!!! Oh the things I wish upon those people!

If I could turn back time

2011-04-12T11:50:00.000-07:00

3 years ago today our lives were changed forever as we began our journey of healing. Who would have imagined that something like this would happen. It was such a perfect day. I would give anything to be able to turn back time to have my perfectly normal little boy back.

Today is a sad day as we mourn the loss of the little boy you used to be. Today is also a happy day as we are so thankful to still have you with us in our lives. We begged, pleaded and prayed for you to stay with us and you did. You are my little fighter who never gives up.

You came back to us just as as a shell of the little boy we once had. You looked the same but everything was gone. Nothing would ever be the same. It has been a tough journey so far but we are making progress. We have slowly been getting pieces of you back and we will never give up until you are whole again!

We are so glad to have your infectious smile and laughter back. You infect everyone you meet with your happiness. You were meant to do great things in this world for you have cheated death more than once in your lifetime already. We Love you ♥

Well it has been a while again since I last posted. I thought I would give an update. Brayden has been doing very well. I think we have finally gotten his medicines adjusted right and he has been great. No more incidents of biting his finger! He has been enjoying the warmer weather and getting to go outside...minus the mosquito bites from the trip to the park.

On a good note, we did get a new van. It is not brand new but, it has a wheelchair lift! No more lifting that heavy wheelchair and getting him in and out of it into the car seat. So much easier and no more back breaking lifting that heavy wheelchair.

Spring break was good with a little bit of allergies flaring up. Brayden continues doing regular therapies at school and at Advance For Kids. We are trying to possibly get a gait trainer for him, just hope it doesn't take a year like the stander did. His sleep study that was done showed no desats in his oxygen level while sleeping. So no more oxygen needed now!!!! We have come a long way from that trach baby! Keepin on, Keepin on with the progress!!!

♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥
"May today there be peace within. May you trust that you are exactly where you are meant to be. May you not forget the infinite possibilities that are born of faith in yourself and others. May you use the gifts that you have received, and pass on the love that has been given to you. May you be content with yourself just the way you are. Let this knowledge settle into your bones, and allow your soul the freedom to sing, dance, praise and love. It is there for each and every one of us." ..."
— Mother Teresa

Has it really been that long?

2011-02-01T07:21:00.000-08:00

I haven't posted in a while so I thought I would give everyone an update. Brayden is doing well since having his tonsils and adenoids removed. He no longer has the rattly, wheezing that always made him sound like he was sick. He no longer requires to wear oxygen at night, his oxygen levels have been great. He has only been sick a few times this winter vs. being sick from fall to spring. His swallowing has also greatly improved. He is doing much better health wise and has even gained some weight.

We have been doing some changes with his medicines, he is no longer taking baclofen and is taking a new medicine called Artane. Not really sure if it is going to work though. He is moving around a lot more taking the new medicine and being more verbal but, he is also very stiff. We will see what they say when we follow up at the Rehab Clinic.

He enjoys school and continues to be his usual always happy, smiling, laughing self. He had a great birthday and Christmas and rang in the New Year with all smiles. We are just continuing with his regular therapies at this time and hope for some new improvements this year. We have discovered that he can activate a switch with his head to make choices of things. We hope to work on that more this year.

We are going to have a swallow study done tomorrow just to make sure everything is going where it should since having his tonsils removed. He seems to be swallowing fine but we just want to be sure. He has progressed some and is eating stage 3 baby foods now. I think this has been hindered some by the medication changes because he now has his tonic bite reflex back. (Tonic bite reflex is jaw closure accomplished by forceful, sustained upward movement of the mandible. It occurs following stimulation of the teeth or gums. It is accompanied by increased abnormal tone in the jaw muscles. It is difficult to release. Damage to the teeth or to the object placed in the mouth may occur. The tonic bite increases if the item is pulled on.) He will clamp down on anything put in his mouth even his fingers.

We hope to see some new improvements this year and I will try to update more often.
Here are some pics!

RIP Peanut, Feb 2008 - Jan 2011. You will be missed!

The new babies

Tonsils are out!

2010-10-02T10:40:00.000-07:00

Brayden's Surgery went well and the tonsils and adenoids are out. No complications and everything went well. The doctor said that his airway had actually gotten a little bigger since the last bronchoscopy was done. We spent the night in PICU and came home this morning. He is doing well except he is in a lot of pain but the pain meds are helping. Thanks to everyone for their prayers. We were all sweating how the surgery was going to turn out even the doctor said he was a little nervous about the outcome. Everything went routine and we are now hoping for a speedy recovery. Get well soon Brayden!!!

After Surgery

Before Surgery

Surgery Tomorrow

2010-09-30T14:30:00.000-07:00

Well I think it is well over due for an update. Brayden is scheduled to have surgery tomorrow. He is having his tonsils and adenoids removed. This may be a simple procedure for most normal kids but, for Brayden this is a major surgery. Due to his already narrowed airway and his previous tracheostomy. There is a 50/50 chance that he may have to have the trach replaced temporarily if anything goes wrong. They will do a Bronchoscopy before the surgery to check his airway and see if any there are any concerns about him being intubated for surgery. If his airway is too small or there are obstructions and they can't intubate him he will have to have the trach replaced so they can put him under anesthesia for surgery. We are hoping that there are also no complications with his airway swelling after being intubated. He will be admitted at Scottish Rite in the PICU after surgery. We are hoping that all goes well and for a speedy recovery. His surgery is scheduled for 0730. Please keep him in your prayers.

Everything else has been going well. Summer was great, we spent a lot of time at the lake, Brayden loves riding on the boat and swimming. School started back and he loves it. He is always so happy to go to school and he loves it when you talk about school with him. He is getting so tall now, my little stringbean! Not much else has been going on. Just school, therapies and Dr. appts.

Here are a few pics.

SUMMER TIME!

2010-06-09T12:07:00.000-07:00

Thought it was about time for an update! Summer has been going well. We went to Myrtle Beach for 6 days, our first vacation in almost 3 years! We had a blast. Brayden loved being in the water. We used our camper for the first time and it was great! We had all of Braydens stuff already in there and no carrying tons of stuff into a hotel room. We stayed at Pirate Land Camping Resort and it was amazing. We were right on the beach and they had tons of things for the kids to do. Brayden's favorite was floating around in the Lazy River.

Brayden has been pretty well since school has been out. We are still doing therapy without much progress being made right now. We are still waiting on the Stander, well over 6 months of waiting for it! We still have nursing care for 24 hrs per week for now and hope that it doesn't change. I need a break sometime. We are still thinking about getting Brayden's tonsils removed. They are very large and have needed to be removed but we are just scared to do any type of surgery on his throat with his already existing throat and breathing problems. We hope to do more botox soon to help with Brayden's leg scissoring and stiffness. Otherwise, we are off to a great summer!

Here are the Vacation Pics!

As warm weather approaches...remember water safety!!!

2010-04-30T09:07:00.000-07:00

Nationwide, drowning is the second leading cause of injury-related death for children between the ages of 1 and 4 (CDC).

Many children who survive a near-drowning live with a brain injury caused by lack of oxygen. These injuries often require long-term care and keep the child from living an independent life.

1-4 year olds are especially at risk for drowning in pools and hot tubs. Their poor balance and natural curiosity puts them at increased risk around water.

How much time does it take to drown?
In the time it takes to...

Cross a room for a towel (10 sec), a child can become submerged
Answer the phone (2 min), a child will loose consciousness
Sign for a package at the front door (4-6 min), a child submerged in a tub or pool will sustain permanent brain damage or die
Most children were last seen in the home and had missing from sight for less than 5 minutes.

How much water does it take to drown?
Inches of water in a bathtub
A bucket of water
Standing water on top of a pool or spa cover
Any amount of water that covers the mouth & nose

Do people always yell for help?
Most children do not yell for help.
Non-swimmers or exhausted swimmers are unable to call for help .
Drowning victims may be struggling under the water.

What is a near drowning?
Near drowning is survival after submersion in fluid.
For each child that drowns, it is estimated that 4 children are hospitalized for near-drowning.
Nationwide, 2700 children ages 14 & under were treated in hospital emergency rooms for unintentional drowning-related incidents.
As many as 20% of near drowning survivors suffer severe permanent neurological disability.
Nearly all who require CPR die or are left with severe brain injury.

Drowning is the number two cause of accidental death for children ages 14 and under and boys are two to four times more likely to drown than girls. Girls are twice as likely to drown in bathtubs than boys. It takes only seconds to drown, and often occurs silently when an unsupervised child is near water. In addition, open waters such as oceans, rivers, and lakes pose a drowning threat to children as well.

Consider these facts concerning drowning from SAFE KIDS USA:

When a child is submerged two minutes in water, he/she loses consciousness.
Irreversible brain damage sets in after four to six minutes of water submersion.
Most children die if they are found after 10 minutes in the water.

To help keep kids safe this pool season, Safe Kids USA recommends these precautions:

If you have a pool or spa, or if your child visits a home that has a pool or spa, it should be surrounded on all four sides by a fence at least five feet high with gates that close and latch automatically. Studies estimate that this type of isolation fencing could prevent 50 percent to 90 percent of child drownings in residential pools.

A pool or spa should be equipped with an anti-entrapment drain cover and a safety vacuum release system to prevent children from being caught in the suction of the drain. The powerful suction forces can trap a child underwater or cause internal injuries.

Don't leave toys in or near the pool, where they could attract unsupervised kids. For extra protection, consider a pool alarm and alarms on the doors, windows and gates leading to the pool.

Enroll your kids in swimming lessons around age 4, but don't assume swimming lessons make your child drownproof. There is no substitute for active supervision.

Remember: inflatable swimming toys such as water wings and noodles are not flotation devices and do not prevent drowning.

Learn infant and child CPR. In less than two hours, you can learn effective interventions that can give a fighting chance to a child whose breathing and heartbeat have stopped. Contact your local hospital or Red Cross affiliate for information about local CPR classes.

Keep rescue equipment, a phone and emergency numbers by the pool.

These guidelines apply to inflatable and portable pools, not just in-ground pools. A child can drown in just an inch of water. Kiddie pools should be emptied and stored out of reach when not in use

Easter

2010-04-05T14:16:00.001-07:00

Not much going on here

2010-03-30T08:18:00.000-07:00

It has been a pretty good month, not much going on here. Brayden has started with coughing and lots of congestion this week again but, that seems to be an ongoing thing with him. Therapy has been going well. He is moving around a lot more and will roll over now. He can scoot himself across the floor by pushing with his feet and moving his head. With help he can get up on his knees and move his legs like he is crawling but he doesn't want to bear weight on his arms. He still doesn't have any control over his arms and he usually will not purposefully activate a toy by using his arms or hands. He tries really hard but it is like he has no control over his arms. He can wave bye-bye with his hands and hold a toy for a short period of time. He is constantly laughing, jabbering, or smiling. He loves going to school and jabbers about it everyday when I ask him about school. He is still eating well by mouth and I have recently been working with him using a sippy cup drinking liquids. Some days he does well with liquids and others he can't tolerate it at all. He is tolerating his wheelchair much better now and doesn't fight the headrest as much as he did before. He has figured out how to get down from the recliner or couch without falling off and hurting himself. He will scoot his butt down to the edge of the seat until his feet reach the floor and then he will slide his butt down the chair and onto the floor then he will slowly fall over to one side. He has done this many times and he thinks that it is funny to do this. We are glad warmer temperatures are here because Brayden loves being outside. Hope everyone has a great Easter!

Shopping Trip at the Outlet Mall

St. Patricks Day at School

2010-03-08T11:57:00.001-08:00

We have been busy either being sick or just doing the everyday things. We are still fighting with the sinus issues, congestion, runny nose, couging. It seems like at least one of us here has been sick every week all winter. Wishing spring would hurry up and get here! Brayden is home from school today due to being sick. Brayden has been doing well despite being sick most of the time.

We are still waiting on getting a stander, we have ordered it but still waiting. We are looking at getting Brayden a new bed. He is getting so tall he will soon be too big for his baby bed. He has also been moving around more and tends to get his legs stuck in the rails of his baby bed. We are looking for a special needs bed with solid rails so he cant fall out or get stuck in the rails. If anyone has any ideas on a good bed just leave me a comment on here or email it to me jacobs1127@yahoo.com

Hope today is a good sign that spring is coming!

Brayden waving Bye-Bye

Happy Valentine's Day

2010-02-14T10:58:00.001-08:00

Brayden has been doing good. School is going well and he really enjoys going to school. We are currently working on getting him a stander since BCW took theirs back when they stopped services. Brayden has been making lots more sounds and is eating stage 2 baby foods pretty well. Brayden had a good time at his Valentine Party and Dance at School. He really enjoyed seeing the snow. He has been very happy and is giggling and laughing all the time. We hope to see more progress throughout the year!

About time for an update....

2010-01-22T08:06:00.000-08:00

I have been so busy lately, I haven't had time to update anything. Not having a nurse here during the week makes me have very little spare time. We all had a good Christmas and New Year and Brayden started back to school after the New Year. He really likes going to school. He always smiles and laughs when you ask him anything about school. Brayden has been sick all this week, coughing, wheezing, congestion and fever. Probably something viral he picked up at school. So no school this week, hopefully he will be feeling well enough to go back next week. I am sick too, so hopefully we will both be feeling better by then!

Not much has been going on besides Brayden starting back to school and doing outpatient therapy for ST,PT,OT instead of having babies can't wait come to our house. I think he really likes it better there but not much progress is being made. It seems like a few steps forward and then he gets sick again and we are starting all over again. Hopefully this year we will start to see some more improvements though. We are looking into doing other therapies for Brayden this year too. Hope everyone is off to a good year so far. Here are a few pics.

Christmas Party

2009-12-19T04:37:00.001-08:00

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

2009-12-16T21:42:00.001-08:00

First Day of School

2009-12-14T20:54:00.000-08:00

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

2009-12-06T22:54:00.000-08:00

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

2009-11-29T21:38:00.000-08:00

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

2009-11-17T21:13:00.000-08:00

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

2009-10-31T22:41:00.001-07:00

Glad to be home

2009-10-23T08:58:00.000-07:00

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

2009-10-09T16:09:00.000-07:00

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

2009-09-27T21:49:00.000-07:00

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

2009-09-18T09:56:00.000-07:00

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

2009-09-11T08:28:00.000-07:00

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!

2009-09-06T23:15:00.000-07:00

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

2009-08-18T11:21:00.001-07:00

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

2009-08-07T11:33:00.000-07:00

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

2009-07-28T22:58:00.001-07:00

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

2009-07-15T13:47:00.000-07:00

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

2009-07-04T00:03:00.000-07:00

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

2009-06-10T01:11:00.000-07:00

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

2nd Annual Benefit Ride for Brayden

2009-05-27T20:18:00.000-07:00

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

2009-05-26T18:04:00.000-07:00

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

2009-05-21T23:28:00.001-07:00

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

2009-05-12T11:41:00.000-07:00

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

2009-04-17T13:34:00.000-07:00

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

2009-04-07T13:32:00.000-07:00

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.

2009-03-23T09:34:00.000-07:00

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

2009-02-22T12:26:00.001-08:00

Glitter Graphics

Happy Boy

2009-02-06T22:35:00.000-08:00

Brayden seems to be all smiles now, laughing all the time. He is doing really well without his trach, too! He is having some sleep apnea and is wearing oxygen as needed at night, but otherwise he is doing really well. We are going for a sleep study later this month. We hope everything continues going well for him. We are still doing OT,PT,and ST. We are going back for more Hyperbaric Oxygen treatments in April and we may try to have a small fundraiser before then. I will post up as soon as we decide on something. Everyone pray that Brayden stays well and continues to make improvements.

Happy to be rid of that stinky old trach

2009-01-20T23:24:00.000-08:00

No Trach Now!!!!!!

2009-01-18T00:06:00.000-08:00

Brayden accidentally pulled his trach out on Saturday Morning. We couldn't get another one put back in. He wasn't having any trouble breathing so we took him to Gordon Hospital. By the time we got signed in and put in a room the hole in his throat where his trach was completely closed shut. By the time the doctor came in the room there was no putting the trach back in. He would have to have surgery to get it back in. They didn't want to deal with him there so he was transported to Childrens Healthcare of Atlanta at Scottish Rite by ambulance. Brayden was breathing fine all on his own. The doctors checked him out and said everything looked ok and sent us home. We were totally shocked. We thought surely we would be staying overnight for them to observe him there. Brayden has been breathing fine all on his own with no TRACH!!!!Everyone please pray that Brayden continues to do well without the trach!!!! We are so happy that it is finally gone and hope it stays that way!!!!

Visit Our New Mall

2009-01-06T19:35:00.000-08:00

"Please click on the Visit Our Mall logo to shop at our great new mall. You will find hundreds of stores and thousands of special deals and coupons in our mall. We get a generous portion of every dollar spent in our mall."

http://www.visitourmall.com/prayforbrayden/

Anoxic Brain Injury awareness

2009-01-05T23:21:00.001-08:00

Near drowning awareness

2009-01-05T23:14:00.001-08:00

Its been a while......

2009-01-01T18:37:00.000-08:00

Its been a while since I have posted anything. Brayden's surgery went fine, but we found out that he will have to keep the trach for at least another year. There was no scar tissue that could be removed but his airway is still very narrow. They hope that he will grow more and his airway will get bigger. If it doesn't he will have to have reconstructive surgery on his throat. So they want him to keep the trach and recheck his throat in 1 year. Brayden did get his new feeding button. It has been great not having that tube hanging on him all the time. Brayden has been feeling well and has been all smiles and laughing all the time. Christmas was good and Brayden got lots of toys to make him smile. We are hoping for big changes in the New Year. We are going to be working hard to learn new things and make great progress. Happy New Year to Everyone!!!!!!!!!

Brayden having surgery tomorrow

2008-12-14T13:34:00.000-08:00

Brayden is having surgery tomorrow. He will be getting his new feeding tube (Mickey Button) and they will be looking at his throat to see if his trach can try to come out at some point. They want him to keep the trach during the winter even if everything looks good with his throat, due to him being sick alot. We just hope everything looks good so we can work toward getting the trach removed. Brayden is feeling much better now. He had a right lower lobe infiltrate and was put on an atibiotic. He is so much better now. I finally posted up some pictures from the birthday party!

Brayden is 2 Years Old!!!!!!

2008-12-08T10:37:00.000-08:00

Its hard to believe that Brayden is already 2 years old. We had a nice birthday party for him yesterday. Pawpaw even came dressed as Santa Claus. He even tasted a little of the the cake. Even though he wasn't feeling well, he had a good time. We are going to the doctor today since Brayden is still sick and seems to be getting worse. Hopefully they can get him cleared up and this won't interfere with his surgery scheduled next week. We have waited long enough for this so everyone pray for Brayden to get better. I will post up some pictures from the party later.

2008-12-06T09:53:00.000-08:00

We have some good news! Brayden is finally scheduled for his surgery on December 15. It is a day surgery so he won't have to stay overnight. They will be looking at his throat to see if his the swelling has gone down enough so that his trach can be taken out. If he has some scar tissue there they will remove it at that time. They are also going to put in a different feeding tube while he under the anesthesia. He seems to be swallowing ok but they still dont want anything by mouth until his throat has been rechecked. He will have to learn how to eat all over again anyway. The wont remove his trach at this time but we will know if his throat has healed. If everything looks good with his throat he will be able to get the trach taken out at soon. We are hoping that everything looks good so he can hurry up and get the trach taken out. Brayden has been sick still with coughing and runny nose. He did get to eat some Thanksgiving dinner, I pureed him some turkey, dressing, green beans, and sweet potatoes and gave it to him through his feeding tube. We are all sick of turkey now after eating so much of it. More good news is that the DFCS has closed their case they had with us. I guess hiring a lawyer took care of them. Brayden really likes the Christmas tree and the christmas lights. Braydens birthday is on Monday Dec. 8th, He will be 2. We are having his birthday party on Sunday.

Finally an Update

2008-11-22T19:26:00.000-08:00

Not much has been going on since I last posted. We have heard that DFCS is wanting to close our case now. Someone from the Governors office is doing an investigation into the case and the Bartow County DFCS. Brayden is still sick and can't seem to get over his cough and cold. No news yet on getting the trach removed either. Both Doctors can't seem to get their stuff together to arrange a date for his throat to be looked at and his new feeding tube put in. Brayden did get his stander and likes it pretty well. He has been kinda fussy lately due to being sick and getting aggrevated with coughing. We are ready to eat some good food on Thanksgiving. I hope everyone has a great Thanksgiving Holiday!!!!

Update on harassment

2008-11-04T10:25:00.000-08:00

We have decided to hire a lawyer to help deal with the Department of Family and Childrens Services. How ironic that an agency who is supposed to be helping Brayden is probably going to end up costing us money we do not have. Money that could be well spent on care or treatments to help Brayden. I have also sent letters to government officials regarding the harassment to see if anyone can help to resolve this matter.Who else do you ask for help when you are being harassed by a state or government agency? I received a call from the governors office saying that someone from the Department of Human Resources was going to investigate the matter. So hopefully we can get something resolved. Brayden has been doing very well and continues to be all smiley and happy even laughing out loud at times. Even though he still has a runny nose and cough he has been in good spirits. He finally got his swing for in the house from his Physical Therapist. He likes it pretty well. He also really likes his new wheelchair and is tolerating sitting in it very well. I will try to post some more pictures up here soon.

Frustrated!!!!!! Being Harassed

2008-11-03T18:06:00.000-08:00

We feel like we are being harassed by Family and Childrens Services. They say that it is all routine stuff but they keep coming to our house and we feel like they are harrassing us. Brayden's accident happened in April, they started coming here in August and have been coming by our house or calling wanting to come out here almost every other week for some reason or another. They want us to have family team meetings and have a social worker come out to our house every week for family meetings. We are fed up with them. They say it is all rountine stuff but everytime they come to our house we all have to be here. They have been here 3 times in the past two weeks and they want Curtis to miss work to be here every time they are here. They even want our kids to miss school so they can be a part of these family meetings, which is not going to happen. They scheduled a meeting here last Monday and Curtis missed work to be here and only 1 person showed up and they couldn't do their meeting and will have to reschedule it. Everytime they come here we all have to tell them what happened on the day of the accident and relive it all over again, even my other 2 children are asked what happened that day. How inconsiderate can they be? Making the other 2 kids relive the traumatic events of that day over and over again. They said due to the severity of injury from his accident
if we refuse to cooperate they will seek legal action. We take care of our kids and they are provided for very well. They said that since Brayden's accident happened there is obviously lack of parental supervision in our home. Which is not true. I don't understand why we are being scrutinized by them because an accident happened. Why can't they go and help some children who really need their help.

On a good note Brayden went to the ENT doctor on Friday. The doctor is going to schedule to look at his throat to see if the scar tissue had resolved enough to remove his trach. If he still has some scar tissue they will remove it then. If everything looks good they will schedule to remove his trach. He will have to stay 2 nights in the hospital but it will be well worth it. We hope everything looks good and he can hurry up and get rid of the trach. We think it will greatly help in speeding up his progress. He has been so good since we got the ear infection under control. He has been all smiles and almost laughing at times.

Halloween Pictures

2008-11-01T12:15:00.000-07:00

We are home and Brayden is feeling much better now

2008-10-27T11:19:00.000-07:00

Brayden enjoying his bath
Miralce Mountain Facility
Brayden doing oxysound harmonics
Here we are coming out of the chamber
Hyperbaric chamber
I haven't posted since we came home from Miracle Mountain because we have been sick and very busy, since getting home. We came home last Tuesday Night, Brayden was not feeling well. He was fairly good on the trip home but, started feeling really bad that night. He went to the doctor on Wednesday, he was running a fever, had a runny nose and cough. He had a pretty bad ear infection. We started him on antibiotics and he is feeling much better now. He is back to feeling good again with smiles all the time and no fussing. I just wonder if his ear was bothering him the whole time we were at the hyperbaric chamber. Brayden is much more relaxed now and not as stiff as as before we went to hbot. He is focusing really well with his eyes and the both seem to be going in the same direction now most of the time. He can definantly see now. He will watch you and start smiling at things he sees. He is making more sounds now and at times it seems like he is trying to talk. We go to the GI doctor on Thursday and to the ENT doctor on Friday. We are hoping that we can start getting things ready for his trach to come out. He is doing so well now. He is swallowing now so hopefully we can get a swallow study done to see if he can start taking some things by mouth. He is holding his head up very good now, too. Everyone is amazed at how well he is doing compared to when he first came home. We have scheduled to go back to Miracle Mountain in April for 40 more hbot treatments. We are going to continue doing the soft chamber treatments until we go back. We just hope that he continues to make progress and that he can get his trach out very soon.

We are halfway done with HBOT

2008-10-10T06:01:00.000-07:00

We have done 20 treatments of HBOT now. Brayden has been very fussy and doesn't like the change in his schedule and not being at home. He also does not like wearing the hood on his head while we are in the hyperbaric chamber. He starts fussing as soon as he sees it coming. We can't wait until the treatments are done so we can come home. We do 2 treatments a day 1 at 7:30 and 1 at 11:30. and we do sound therapy 2 x a day for 30 minute sessions each. Curtis and the kids came to visit for the weekend so maybe Brayden will cheer up some. Mom and Pawpaw are worn out because Brayden has decided not to sleep much while we are here. So maybe things will calm down since Brayden is getting more used to doing the treatments. I haven't had time to update because things have been so hectic here. We also do not have any service on our cell phones here so I can't get calls or make calls. We will be done on Oct 21with all of the treatments. Things are going well except all of the fussing from Brayden. Hopefully though this means that things are going to get better.

Update on Brayden

2008-09-20T21:20:00.000-07:00

Brayden has been doing pretty well the past few weeks. He has been able to wear his passy muir valve (speaking and swallowing valve) on his trach all day long. He is able to breathe air in through his trach but he has to breathe out through his mouth or nose with the valve on. He is also able to make sounds and able to cough stuff up instead of all of his air and secretions coming out of his trach site. This is a great accomplishment compared to only a few weeks ago he couldn't even keep it on for a few minutes without coughing so hard and struggling so hard to breathe out with it on he would just pop the valve right off of his trach. He has been making gooing sounds all the time with it on and he makes sure we can hear those loud cries when he gets fussy. We were having to suction his trach many times an hour but now since he is wearing the passy muir valve, we don't even need to suction him at all. He is able to cough up any secretions and his is swallowing pretty well. Hopefully this is a good sign that the trach will soon be gone. Brayden has been feeling alot better since we started him on an antibiotic for his g-tube site (feeding tube) which looked infected. His g-tube site is looking much better now too, it was all red and irritated and I think alot of his fussiness was due to pain from his g-tube site. He is starting to be able to move around alot more now too. He is kicking his legs now and he is also lifting his head very well when he is on his tummy. He can scoot around and push himself off of his mat we lay him on while he is on the floor especially when he is mad or fussy. He loves to sit in dads recliner and has really taken it over but now he has figured out how to scoot and push his way down to get out of it. He wants to walk so bad he can stand it. He will stand up and while you are holding him and get so mad because he can't hold himself up. He has started to push his knees up when he is on his tummy too and he has started to roll a little bit when he is laying down. He can roll over by himself if he gets mad enough but if he isn't fussy he can't quite make it. He has his good days and bad days and we just take things one day at a time because we never know what to expect. He enjoyed his sisters birthday yesterday, he even tasted a litte dab of icing and ice cream. He has been really sweet and calm all day today and able to wear his passy muir valve all day today. He has been smiling and gooing all day. We are excited about going to Miracle Mountain for HBOT. We will be leaving on Sept. 28th and gone through Oct. 21st. Thanks to everyone for their donations who have made it possible for Brayden to be able to receive these treatments.

Pics from Brayden's Benefit Car & Bike Show

2008-09-07T21:46:00.000-07:00

Thanks to everyone who made this event a huge success!!!!!!!!!!!!!

We are going to Miracle Mountain for HBOT in September!!!!

2008-09-04T19:54:00.000-07:00

We got in to Miracle Mountain for their September-October Session for Brayden to do his hyperbaric oxygen therapy. We will be going from Sept 28 - Oct 21. They have a hard chamber there with 100% oxygen. We hope we see results like we have using the soft chamber, because he has came a long way since the day he came home. We are excited to see the results from doing the 100% oxygen chamber which delivers more pressure and 100% oxygen. Where as the soft chamber he has been going to uses less pressure and less oxygen but, we have seen great results from doing it. So we are very excited to see what the hard chamber will do for him. Mom and Pawpaw will be going with him.

Brayden has been sick again. Spitting up, very fussy, running a fever and just feeling rotten. He has also been very agitated and fussing all day and all night, where nothing at all comforts him. Its very frustrating when he is constantly fussing and nothing that we do helps to comfort him. We went to the pediatrician and everything checked out ok, so maybe it is just something viral. He has been feeling a little better today with less fussing than the previous 5 days. No fever today either, so that is good. Maybe he is on the road to recovery.

We hope he is feeling well by Saturday so he can make an appearance at his benefit car show. We really appreciate everything everyone has done with the car show for Brayden. The address for the car show is: 4976 Hwy 58, Chattanooga, TN 37416. We hope it is a success because without the benefits for him there is no way we would be able to do the hyperbaric oxygen therapy for him.

Brayden has been sick

2008-08-26T23:26:00.001-07:00

Brayden has been sick with a stomach virus. He has been very fussy, spitting up alot, and vomiting some too. He has been very agitated and seems to be in alot of pain with his little tummy. But he did give me some smiles tonight when I was playing with him. Hopefully this will pass quickly and he will be feeling better really soon. I have been in contact with Miracle Mountain about Brayden going for HBOT in September. They had 1 space left and I sent off the paperwork today, hopefully he will be able to go. The only reserve your space after they receive your deposit, so we hope it gets there before anyone else's does. Friday is Big Brother Evan's Birthday, he will be an old man of 14. Happy Birthday Evan! Brayden's car show is coming up soon too, Saturday September 6th.

Brayden sitting up in his bumbo chair!!!

Brayden feeling better now

2008-08-19T15:17:00.001-07:00

Brayden is finally feeling better and looking much better now. Brayden had an allergic reaction to triple antibiotic ointment that we put on his face, for the blisters from his sunburn. Here is a pic of before the ointment was applied and after the ointment was applied.

He has been smiling alot the past few days and almost laughing at times. He wants to get up so bad, he gets mad because he cant go anywhere. He did manage to roll or scoot his way off of his mat he usually lays on. I never saw how he kept getting off of it. He is moving his head side to side and tracking more with his eyes. He will follow you if you are just walking by him and don't even say anything. He is also more relaxed now and even straightens out his right leg. We are still doing the mild hyperbaric oxygen therapy in the soft chamber. Hopefully, we will start doing the hard chamber treatments with 100% oxygen soon. Many thanks to everyone who donated money to help with this and thanks again to everyone who helped out with the ride. Brayden's next benefit is the Car show in Chattanooga, on Sept. 6th.

Braydens Ride

2008-08-10T17:59:00.001-07:00

Braydens benefit ride was great, we raised $2,060. Thanks to everyone who helped with the ride, the carwash, and the food. We had a total of 42 bikes in the ride. Thanks to the pathfinders youth group from Apison Seventh Day Adventists Church, they washed a lot of cars today. Thanks to Ringgold City police for their escorts through the intersections on Alabama Hwy. Thanks to Walgreens for letting us set up the ride there. Brayden had a good day and enjoyed being at the ride even though he did get a pretty good sunburn today.

Pictures from Benefit Ride

2008-08-10T17:53:00.000-07:00

Ready for the Ride

2008-08-09T21:50:00.001-07:00

Brayden trying on his glasses, and smiling for his nurse Catherine.
We hope the benefit ride is a huge success! Thanks to everyone who has helped out with the ride and to everyone who participates.

Really Tired

2008-07-28T22:30:00.000-07:00

Once again the nurse did not show up again. It seems everytime we have something to do the nurse does not show up. We have to be in Atlanta at 8:30 in the morning for a Neurologist appt. so we will have to leave our house about 6:00 am to beat rush hour traffic and make it there on time. So I am staying up most of the night and having to get up at 5:00am to get ready to go. I have a full schedule of things I have to do tomorrow when we get back, so no time for naps. The nurse who usually stays here on Tuesdays will not be coming back because she was caught sleeping several times. So we probably will not have a nurse again tomorrow night. I feel like I can't get a break. Brayden has been very fussy, he is teething getting 4 teeth at the same time. Otherwise we went to see the ENT doctor last week and he said that he would look at Brayden's throat in 3 months to see if his trach can come out. So everyone pray that Brayden can get his trach out.

Brayden had a good day

2008-07-21T09:38:00.002-07:00

Brayden had a good day yesterday, he was smiling all day. It is great to see that smile again. We have a busy schedule this week with appointments, I will try to update if I can.

Braydens You Tube Video

2008-07-13T21:00:00.000-07:00

Benefit Ride For Brayden August 10th

2008-07-09T17:55:00.000-07:00

The benefit ride for Brayden will be on August 10th at 10:00 am. I am not sure of all the details yet but will post them as soon as I know. The ride will start at Walgreens in Ringgold. There will also be a carwash there and food. I think the prices will be 25$ per bike but I am not sure yet on that. Anyone with ideas on other things please feel free to let us know. Brayden has had a good day today. He did not have any ativan all day. He has been pretty calm, but is getting a little spoiled wanting to be held alot. He is holding his head up well now and is looking around and turning his head toward sounds even more than before. We are still not sure about his vision, I think he can see some. He has been very relaxed and had a really good day today.

Brayden contiues to improve

2008-07-08T19:10:00.000-07:00

Brayden continues doing his HBOT in the soft chamber. He has done 14 treatments so far. He is now holding his head up pretty well and he is turning head to sounds. He is moving his arms more now and grasping things with his hands. His hands are more relaxed now. This is a great improvement for the tight balled fists he has had. His right side still remains very tight and flexed up most of the time but we are woking on stretching him out. Brayden started on a new medicine a Catapres patch, it seems to relax him alot more and he is now relaxing his right arm more. We have good days and bad days with the storming. Yesterday was a bad day with storming almost all day but today has been a good day. We are still trying to raise money for Brayden to get HBOT in a hard chamber, we havent really gotten anything yet. The benefit ride and carwash for Brayden is scheduled for August. Brayden has been smiling more now and that is the best thing of all. The picture is one of him smiling and laughing before his accident.

Continuing with HBOT

2008-06-26T12:10:00.000-07:00

Brayden continues doing his Mild Hyperbaric Oxygen Treatments (soft chanmber). He is doing well with them. He is now holding his head up pretty good, and even turning his head from side to side at times. He will turn his head and look when he hears things now. He is still having the neurostorms but the ativan is working well and usually calms him down pretty quickly. Not much else going on with him right now. We cant wait until his Physical Therapy gets started. They are supposed to come out and evaluate him on July 3rd. So hopefully things will continue to go well and he will continue to make more improvements.

We have started Hyperbaric Oxygen Therapy

2008-06-16T07:46:00.001-07:00

We have started a mild hyperbaric oxygen therapy. Brayden has been to 3 treatments. The mild hyperbaric oxygen therapy uses less pressure and oxygen than regular hyperbaric oxygen therapy but it is close to our home and it was affordable. We are still trying to raise money so Brayden can get regular hyperbaric oxygen treatmens. Brayden seems to be improving some. He can now hold his head up for a little while and he seems to be more alert now. He still continues having his neurostorms but the ativan is working pretty well to help calm him down. We are going for another HBOT today. I will try to update more often, as I am not finding much time to post. Please check out the link on the right to hugs for near drown children Brayden is the Child of the month on their website : )

Still Storming

2008-06-07T20:40:00.000-07:00

Brayden is still having neurostorms. More frequently than before now. The only thing that helps is giving him ativan, which makes him sleep all the time. He has been crying alot, nothing seems to ease him. I just feel so helpless because nothing seems to help but knocking him out with the ativan. He finally got his bath seat so now he can take a bath in the bathtub!!!! We are still trying to raise money for his HBOT. Brayden went on his first outing on Friday. He went to see his pediatrician for a follow up since his hospital discharge. We are only getting nurses 12 hours a day at nights now from 7pm to 7am. Between all the other things I have to do and taking care of him, I am totally exhausted. I will try to update more often but I am finding very little time to do things now.

We came home today

2008-05-29T19:53:00.000-07:00

Hooray!!! We finally came home today. It took a while to pack all of the stuff in the car after being in the hospital for 48 days. Brayden did great on the way home and slept the whole way home. All of his equipment was delivered and the nurses arrived to take care of him. His room is now full of all the junk it takes to take care of him. It was a pretty good day. Brayden did have one little episode of storming (high heart rate, very tense with increased tone, sweating). He is also having some stomach issues, not sure if it is the formula or what but he seems to be having some stomach cramping and a lot of gas. We have changed his formula to pediasure maybe that will help. So now we will see how everything goes at home. The nurses will be here for 24 hrs a day for the first 3 days. Hopefully everything will go well. Please continue praying for Brayden!!!!!!!!!!!

2008-05-21T20:45:00.000-07:00

Brayden had an ok day today. He has been crying alot today. We have had the speaking valve on his trach today and we can actually hear him crying. After not hearing any sounds from him for over a month it is nice to hear him crying. We were only approved for inpatient Rehab in the hospital for 7 days. We did not get approved for Rehab any more so he will be switched back over to medical status in the hospital. Brayden will now only get 1 and 1/2 hours of therapy a day. That is 30 minutes a day for each discipline speech, occupational and physical therapy. Makes you wonder what the hell kind of monsters run insurance companies these days. You have a child who is walking and talking and eating all on their own and then he can't even hold his own head up, speak or eat and he only qualifies for 7 days of inpatient rehab. What is wrong with this system????? It seems to me that if a child has a brain injury that the insurance compainies want them to remain that way instead of getting them the therapy that they really need. We will hopefully be going home next week. We are just waiting on the insurance to approve home nursing care and to get all of his medical equipment delivered. Brayden did get fitted for a custom wheelchair today, it will take about 4 months before we get it though. But we have the one donated to us from a patient at my work PSA. It was only used one time and is in mint condition. I cant say thanks enough to them for letting us have it. When Brayden no longer needs it we will donate it to someone else who may need it. So right now we are just trying to get all of our training done at the hospital they mandate us to have before he can go home. Tomorrow I have an appointment with a Doctor at HyOX the hyperbaric Oxygen treatment center. We are trying to find a hyperbaric oxygen chamber clinic to take Brayden to once he comes home. This therapy has great results with brain injuries but is not approved for use with brain injuries in the US. So insurance will not cover the cost of this therapy. I am going to set up a fund for Braydens medical expenses because we will need alot of help so he can get these treatments. They are very, very expensive. I will have more information up on here later if you would like to make a donation.

2008-05-20T19:26:00.001-07:00

Brayden did well in Rehab again today. He has been crying alot today also. He was sleepy most of the day today also. Brayden got a new wheelchair donated by a patients family from PSA. We may be getting to come home next week.

Continued healing

2008-05-19T09:14:00.000-07:00

MONDAY, MAY 19, 2008

Brayden continues doing well in Rehab. Dad has been at the hospital with him over the weekend learning to do all of his care. Brayden did have some storming episodes lastnight, high heartrate, very tense and sweating alot he had to be given some ativan. He has been crying alot lately. The doctors did say that they would write an order for us to get the hyperbaric oxygen treatments. They suggested we see about getting tubes put in his ears first though. We just pray for his continued healing and hopefully we will get to come home soon.

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FRIDAY, MAY 16, 2008

Brayden is doing well in Rehab. He is continuing with Speech Therapy, Physical Therapy and Occupational Therapy. He got a regular bed in rehab instead of the baby bed he had in Icu, so we are able to lay with him and cuddle with him now. He is also only wearing the heated trach collar at night and his feedings are not continuous now. We can actually hold him without a bunch of tubes and wires connecting him to something.
Braydens insurance only approved him to be in inpatient rehab for 7 days so we may be coming home sooner than we thought. They are already setting up home nursing care for us. Brayden had some new splints made for his arms today. He is still very tense and tight in his arms most of the time. They tried a speaking valve (passy-muir valve) on his trach but his trach is too big for him to breath around it. They have ordered him a smaller trach so hopefully he can use the speaking valve. It will take 3-5 days to get the new trach. So hopefully he will be able to make some sounds soon.

WEDNESDAY, MAY 14, 2008

We moved to Rehab today!!!!!!! Brayden contiues doing well and he even got up in a wheelchair yesterday. I pushed him all around the TICU unit not connected to any wires or anything. He is starting to act like he is trying to cry more now. He is looking around more now too, but he still isn't tracking or focusing on anything. Maybe we can start to make more progress being in Rehab now.

WEDNESDAY, MAY 14, 2008

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MONDAY, MAY 12, 2008

Brayden continues doing well. He is starting to look around even more and move around some more. He will make a face to something he does not like. Physical Therapy continues working with him while we are waiting on approval for Rehab. He has a little chair he has been sitting up in and he has also been up in a wheelchair. He has his new braces for his feet now. His lungs are clear now and he is doing very well with the trach.

FRIDAY, MAY 09, 2008

May 9, Brayden is continuing to do good on the heated trach collar. His secretions are a lot less now. He seems to waking up more and moving his eyes around but still not focusing on anything really. We moved out of the PICU yesterday because he is now stable. We are in the TICU, room 5. We are still waiting on approval to go to Rehab.

WEDNESDAY, MAY 07, 2008

May 7, Brayden is continuing to do good on the heated trach collar. His secretions are a lot less now. He seems to waking up more and moving his eyes around but still not focusing on anything really. We moved out of the PICU yesterday because he is now stable. We are in the TICU, room 5. We are still waiting on approval to go to Rehab.

TUESDAY, MAY 06, 2008

May 6, Brayden is off of the ventilator and on a trach collar today. He has been doing good with it, breathing all on his own. He has been a little more alert today, moving around some too. Hopefully he will continue doing good on the trach collar and we can be getting out of the PICU.

FRIDAY, MAY 02, 2008

They are weaning him off of the ventilator and continuing to wean him off of the sedation medication. He will start back on the methadone to prevent him from having any withdrawl symptoms. We have now been in the PICU for 22 days.

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THURSDAY, MAY 01, 2008

May 1st, Brayden's 1st trach change was done and the paralytic medication is stopped and they are weaning him off of the sedation. He is still on the venitlaor.

My journey of healing begins

2008-05-19T08:26:00.000-07:00

Brayden suffered a near drowning on April 12, 2008. He was 16 months old.

Brayden was playing in the backyard with his sister Kaitlyn, they were jumping on the trampoline while I was cooking out on the grill. I went inside to take the food in and set the table so we could eat. When my daughter came in the front door, I immediately said, where is your brother? She said she didn't know we both ran out the back door. I scanned the backyard screaming his name. I asked Katilyn where is he at, she said I dont know maybe he fell in the pool. I looked in the pool I couldnt see anything at first the water was dark green and coated with a thick layer of pollen. Then on the other side of the pool, I saw his little blue and orange tennis shoes. He was floating face down in the water. I immediately ran to the other side of the pool and pulled him out. He was not breathing, I threw him over my shoulder and ran to the deck where CPR was started. My daughter ran inside to get the phone so I could call 911.

When EMS arrived he was still in full cardiac arrest. The EMS took him inside the ambluance to work on him and someone came out and told us that things did not look good for him. EMS continued CPR and after giving him Epi/Atropine his pulse finally returned they had a heartbeat of 38. He was intubated by EMS due to still not breathing and once stablized enough for flight he was flown to Childrens Healthcare of Atlanta at Scottish Rite. He had to be given more cpr and epi/atropine 2 times en route to the hospital due to his heartrate dropping really low. When he arrived at the hospital he was put on a ventilator and his body temperature was 80.06 F, they had to get him warmed up. He was admitted to the PICU for further care.

He had 2 CT scans done 1 of which showed a very mild disturbance of gray matter-white matter differentiation. His MRI showed that he had hypoxic ischemic injury with decreased diffusion involving the thalamus and hippocampal formations. The Neurologist said that he would have some deficits due to his brain injury but we really will not know what has been affected until he wakes up. Brayden remained on the ventilator until April 16th, he was taken off of the ventilator and put on oxygen by nasal cannula. He started having respiratory distress and was given racepinephrine treatments and started on methadone for possible withdrawl symptoms from the sedation used while he was intubated. He was started on a high flow oxygen by nasal cannula. He did well and was being weaned down on his oxygen. Sometime during all of this they thought he possibly had a seizure and they started him on Keppra to prevent seizures. On April 22 he started having respiratory distress again, work of breathing, increased heart rate, and blood pressure. On April 23 he was re-intubated and put back on the ventilator. On April 27 he was taken back off of the ventilator and tried again on the nasal cannula. He did well for the first day but that night he took a turn for the worse and almost had to be reintubated again.On April 28th, after talking with Brayden's doctors the decision to put in a tracheostomy was made. A PEG tube for feedings was also done at the same time. It was found that Brayden had acute inflammation with swelling of his sub-glottis area and active granulation tissue partially occluding the subglottis. Brayden made it through his surgery fine and now has a trach and G-tube. He has to be sedated and paralyzed until they do his first trach change. Now our journey of healing begins.

Brayden's Diagnoses:
Near drowning/Accidental drowning
Anoxic Encephalopathy
Generalized-onset seizures
Acute Respiratory failure
Surgeries: tracheostomy and G-tube