BRANDEN'S STORY

(October 31 2004-September 2005)

Branden Ryan Ketchen Miller was born 12:45 am on October 31, 2004 at Saint Boniface Hospital. Branden came into the world an uncomplicated and drug free delivery. He tipped the scales at 5 lbs 13 oz, a little small baby boy but with a big heart. Our little pumpkin came home the following day.

At home everything went relatively smooth. Just the usual newborn issues. For example Lack of sleep, up every 2 hours through the night for feedings, normal dirty diapers, the unexpected urination EVERYWHERE, but in all honesty we had a new child to cuddle, love, and embrace throughout each and everyday.

Branden at birth had a slightly larger head. Being 3 weeks early doctors said it was normal for this and that the body would catch up to the head size. It wasn’t until 3 months when a doctor had thought that there might be something wrong. With an ultrasound the doctors found a slight amount of fluid on the brain (hydrocephalus), however the amount was not to be alarmed about, but we were to keep an eye on it.

Branden developed normally, hitting all of his milestones up to 6 months of age. He was very alert and attentive. He grabbed things, enjoyed the excersausers, jumpers, kicking and hitting objects while lying on his back in his jungle gym. He was able to bounce up and down in as assisted stance. He even would pull himself up to a sitting position and then to a standing position on the change table. Just when we thought we off and running with our new healthy baby boy thing slowly started to change. Branden would never be the same child we knew.

In Branden’s sixth month his unexplained irritability slowly grew. He developed a slight fuss and whine which eventually grew to 10 to 12 hours of the day (around 9 months). Looking back on things now and knowing the symptoms, it was a gradual decline in movement, motor skills, and an increase in irritability. We saw his progression of milestones come to a halt. One morning we woke up and it seemed that Branden (about 7 months of age) was favouring one side more then the other. His left side was getting more rigid and the movement on his left side decreased. Our first thought was a stroke, but was still able to move his arm. In his jumper, his left arm slowly slid down to his side and would stick out the bottom; we were forever pulling his arm out. We watch this for a week and proceeded to the doctor to explain what we are seeing. The doctor diagnosed swollen glands and an ear infection. Take some antibiotics and come back in a month’s time…….just the run around. (Krabbe Disease is commonly misdiagnosed as an ear infection. This we find out later from the neurologist.)

Between the age of 7 to 8 months Denise and I tried to teach him to crawl. Branden milestone to crawl had come and past and was not making any new progress. We would spend hours on the floor holding assisting him in the position and notice that he could pull his legs underneath him but didn’t have the head or arm control or strength. He was to hold the crawl position but wasn’t able to proceed forward.

At 8 months the pediatrician finally opened his eyes to what we were urgently explaining and seeing in Branden. He proceeded to set up 3 appointments;
1- Pediatric neurologist - which has a 3 month waiting period
2- Physiotherapist - about 3-6 week wait
3- Child Developmental Specialist - 3-6 week wait
Again went back home with no answers of what was taking place right before our eyes.

Finally 3 weeks later we got an appointment (Friday July 15) with the physiotherapist, who understood our frustration and fear had given us some sort of clue. We explained the run around, and not knowing what was going on to the therapist. She assisted Branden with his frigidness in his limbs, the hyper tone, irritability, and given us her thoughts. She said he shows all the signs of Cerebral Palsy. To Denise and I, it was a relief to get an answer so we could pursue his ailment, but we were still devastated.

That weekend we read over literature on Cerebral Palsy and realized that some traits Branden was showing were very much the same but some traits didn’t fit. After a good talk, Denise and I decided that we couldn’t wait 3 months to see a neurologist. That Sunday when we returned from the cottage, we took Branden straight to the Children’s Hospital. Not knowing the hospital system then, but looking back now that was the best decision we could have made.

Once in emergency it was just the start of a process of elimination for the doctors. One after another, doctors kept coming in checking out Branden. Late Sunday night, a C.T scan was done on Branden’s head to try to pinpoint the cause of the problem. The following day we had met the pediatric neurologist and he explained what he had thought could possible be affecting that the C.T scan had shown shadows in it and that he would need an MRI as soon as possible. For the following week Branden we a pin cushion, giving blood for a million different tests, getting intervenes for his dehydration. Blood work was specially shipped to a lab in Maryland, USA to do an enzyme test to pinpoint which one of the 34 different Leukodystrophies.

Five days in the hospital, not knowing what was going on, with doctor after doctor observing him, it felt like an eternity in there. That Friday a MRI test was carried out on Branden’s head, which confirmed what we were facing was indeed a leukodystrophy. The MRI showed areas of the brain already affected by the disease. Shortly after that (July 22) the results from blood work had confirmed Krabbe Disease.

The one question we asked the neurologist had brought everything into prospective. That question was “How much time do we have left?” That’s when life really began. With a new outlook for life we began to live for the day, treasuring every moment as if it was the last. We saw the beauty in everyday activities which normally go by without any acknowledgment. We literally slowed time down to enjoy every waking moment with Branden. We could only slow our lives down but had no control over what was controlling Branden’s life.

As the time passed on and the disease progressing, Branden’s motor skills and bodily functions slowly regressed. His swallow and tongue control had greatly been affected, which put us back into the hospital August 15, for 18 days. He weight was slowly dropping, and bottle feeds got harder and harder for Branden to handle. Denise and I decided Branden would undergo surgery and receive a gastrostomy tube (GT tube). With a tube going directly into his stomach, Branden would be guaranteed he would receive all the nutrients and medications that he would need to survive each day. Each week he showed signs of progress in his weight gain. This gave Branden the energy again to enjoy the new daily routine.

As time passes and we learned Branden’s daily routines of his favourite cartoons, songs, games and nap times but also his irritability, full body spasms, and his painful cries. His spasms would cause his body to arch backward will holding his breath between cries that his lips and face would turn blue. We become our own little walking pharmacy\nurse when we leave the house. With us goes five different medications, syringes, a suction machine (in case of choking), pre measured formula, feeding pump and hoses. This all became routine for Denise and I. We had gotten use to feeding Branden in public, at restaurants, walking through the malls, etc. He needs to eat just like everyone else.

But just as we get accustomed to all the daily struggles and challenges and believe that our son will have the energy and strength to fight to be around with us for longer then we first thought, we get word from the neurologist that his eye sight is slowly slipping into darkness. Two fears that I’ve had from the start: One, our son living in a world of darkness, and two, Branden progressing into the third and final stage of the disease. Still in good spirits, Branden reacts to stimuli the same as he did earlier on. He still laughs when daddy jumps with him on the trampoline, laughs when we do “The Little Piggys” on his toes, and “Itsy Bitsy Spider”. But everyday is something different and life is now day by day.

The memories we gained in the months following his diagnosis, we will always hold dear in our hearts. The friendships we’ve gained through troubled times will never be forgotten. Thanks to camcorders and digital cameras we will have hours of viewing time of our son. And the memories still to be discovered day after day.

(October 31 2005-May 21 2006)

Remarkably Branden has held on this long to fulfill one of Denise and my dreams… to celebrate his first birthday. Even if it was his one and only birthday it was a milestone that we had hoped to achieve. Looking back on it now, it’s the unknown that the hardest to face, you make goals or milestones you try to achieve but are unsure if he will ever get there. But once you get there you set new goals and keep moving forward. His birthday was a blessing and celebration. The doctors, who had diagnosed Branden, did not expect him to live to his first birthday. But he has proved the doctors wrong time and time again.

Branden’s first birthday was celebrated like it was his first and last. Sixty five family members and friends showed up all in Halloween costumes to celebrate the special day. This day was surreal because we realized that this was his one and only birthday parties we would hold for our son, and the hardest thing was opening his presents.