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.