Wheelchair van for Brayden

Here is the link for Brayden’s go fund me account for a new wheelchair van. Please share with everyone. Any donations are greatly appreciated. https://www.gofundme.com/a-wheelchair-van-for-brayden

Surgery was a success

Brayden's Baclofen pump surgery went well and we are home now. He is still very sore with the incisions on his back and stomach. He doesn't seem to be in a lot of pain just very sore especially around the pump site. He can start sitting up some today as he has been laying flat for the last 6 days. He only had his pump turned up one time and he is already less stiff than with the oral Baclofen. He has been glued to the tv since we got home because he couldn't see the tv on the wall laying flat in his hospital bed. He missed 5 days worth of cartoons! We are also weaning him off of his artane because they think he doesn't need it now. So the only medicines he will get now are his Prevacid and melatonin at night. So the pump was a good decision. I just wished someone would have done it sooner instead of all the medicine trials that didn't work. He is one tough cookie!

Anniversaries and Surgery

Friday will be the 5 year anniversary of Brayden's survival of drowning and Saturday will be our 11th wedding anniversary. Brayden is having surgery Friday to have his Baclofen pump put in. Praying that everything goes well and this really helps him. We will be in the hospital 5 to 7 days after the surgery. I also recently found out that I am going to be a grandma! Say a prayer for us.

It has been a long time

Sorry it has been so long since posting. As you all may not have known, on Oct. 18th, 2011 I suffered a massive stroke. My right side was affected and I have had to learn to do everything all over again. My mom cared for my children while I was learning how to walk, talk, and how to use my arm and hand again. It has not been an easy road to go down especially having a special needs child who requires a full time caregiver. Brayden has been doing good. He started kindergarten in a new school this year. He really loves school. Here is a quick update on things since the last post. We no longer receive nursing care because the state of Georgia thinks he doesn't need it. We moved to a new house with no stairs & a lot more room. We had some teeth knocked out, at the dentist, while they were being cleaned. We got a new wheelchair and new kafo locking splints last year. We have been working on his meds to help with his tone and he is probably going to wind up with a baclofen pump. We got a new dog last year. Brayden has been doing really well. I'm sure I am forgetting everything but my memory is not so good now. I will try to update more often this year!

Yeah! No School

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

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

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?

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!

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

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!

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!!!

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

Not much going on here

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

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

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....

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

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.