Thursday, June 7, 2012


We are pleased that Henry is still doing well with real food being added to his formula.
He is on a regular schedule - which means he wakes up, has his morning meds, has breakfast, plays, get's dressed.
Mornings are usually full of cleaning up and cartoons or music. Lewis is at an age where he enjoys the same things as Henry, so Phineas and Ferb have made several appearances lately!

In the afternoons we usually make a trip to the supermarket, post office or other errands and then pick up Zane and Anastasia.

In the evenings, we eat and have more medication and put on pajamas. We have been playing in the big king size bed upstairs before transitioning to Henry's toddler bed at about 9pm. He usually goes right to sleep and sleeps through the night! I can't believe how different he is, and that it was only food that he needed! 

He starts school in the fall. We are excited and nervous. We've met two teachers and will have another visit before we send him off on the bus in September!

Hoorah for Henry! 

Saturday, April 7, 2012

April Fools.

We have had a wonderful week. Henry has been happy, and peaceful. There has been no mystery crying.
Last weekend, desperate for a solution, I resolved to try a few things to see if I could discover the source of Henry's tears.
I decided to add a little bit of food, pureed veggies and oatmeal to his regular formula intake. On Sunday, April 1st - Henry stopped crying after I cave him two tablespoons of banana and blueberry, mixed with oatmeal and formula, through his tube. It was like he transformed. I don't want to be overly dramatic, but the kid started playing on the floor, he started cooing, his skin got warm and his face changed.

Every day now, he gets two to three serving of fruit and veggies with every bolus. He also gets about 3 servings of oatmeal over the course of a day. He also takes his entire dose of formula. He had been only ab;e to tolerate half or 3/4 without starting a cycle of gas and pain. He no longer has gas associated with his gtube. His BM's are no longer watery. He has started to gain weight and he is happy.


Occasionally, now, with a spare moment to hear my inner voice, I beat myself up. Maybe I should have known that all he needed was food.

Two to three servings of fruit and veggies a day.

But, it doesn't matter. Now that Henry has stopped crying, the rest of our lives has brightened. We no longer worry. Feeling helpless to change things, colors all of your choices in a day. Depression is absolute. Laughter is sarcastic and joyless.

Henry is happy. So are the rest of us.

I have caught my family laughing and telling stories and playing - with a joyful twinkle.

Someone called Noah and I heroes yesterday. I shrugged it off. We are parents. We do nothing more or less than any other parent. We love our children.

Henry is the real hero. He won't give up on us, even when we have nearly given up on ourselves.

Saturday, March 24, 2012

Mystery Crying

Since birth, Henry has had abnormal bouts of crying. The doctors didn't want to look at it, because "babies cry". It was the same with vomiting. He threw up, all the time. Not simple spitting up, but full emptying of his stomach. Sometimes, several times a day. We were constantly feeding him, trying to keep him nourished.

After the diagnosis of Henry's lazy epiglottis, and gtube surgery, the vomiting stopped! But the crying continues.

We have read pages and pages of  information on brain injuries trying to puzzle out the cause. His doctors have no clue or suggestion for treatment. We suspect it may be a neurological issue, but are unable to corroborate our suspicions.

We live with it. Sometimes gracefully, sometimes not.

Hopefully, someone will be able to tell us why. Hopefully it will be treatable.

Until then - at least we still have hope.

Monday, March 12, 2012

March is Cerebral Palsy Awareness Month - Equipment

Children with Cerebral Palsy often need support in many different ways. Medical equipment for general support, like a wheel chair.
Support equipment, like a walker/stander to help build muscle memory and bone density. 

There are many other things too. Henry uses braces and special shoes. He also has braces for his wrists to help prevent his hands from turning in. 

Henry also has equipment for his Gtube. He has a pump for over night feedings and for the times when regular bolus feeds aren't working. 

Most of this equipment is very expensive. The items pictured total a cost of more than $6000. Because children grow, equipment will need to be altered and adjusted, or simply replaced as they are out grown.

Sunday, March 11, 2012

March is Cerebral Palsy Awareness Month

Sometimes, Henry cries for no apparent reason. After 4 days of trying to discover his source of pain or discomfort we are at a loss. Our arms are tired and weak from hold him during fits, and our spirits are worn thin.
Discouragement is the hardest feeling to manage, these days. It never seems to diminish. In this video, he is on a 'respite' from the real waling that he does, sometimes for 30 - 45 minutes. He can cry for entire days, with out a break.

I did not post this video, because I wanted advice. If there is something to try, please know that we have tried it. Nothing works. If you think it's his teeth, or he is having growing pains - please know that he is also medicated, with pain medication AND anti anxiety medication. We have been dealing with this sort of crying since he was about 9 months old.

Saturday, March 10, 2012

March is CP awareness month - Ataxic Cerebral Palsy

March is Cerebral Palsy Awareness Month. 
The Cerebellum is part of the brain that governs smooth movement - motor skills , and is also thought to participate in the function of language. When this part of the brain, is injured language is affected, causing delays or a complete inability to communicate verbally. The lack of motor skills also inhibits the use of hands as an a tool for communicating. Until Henry was born, I had never heard of 'eye gaze' as a form of communicating. 
The Cerebellum is known as 'the little brain'.
Henry has Ataxic Cerebral Palsy - the type of CP that I just described. He doesn't have language. Sometimes, though, we are able to determine what it is that he likes or doesn't like. It is very difficult, however, to only be able to determine once or twice a day, what it is that he's trying to say - if it is in fact an attempt at communicating, or just my overwhelming desire to have some connection with him. Over all, Henry does not talk. He smiles. He cries. Sometimes he tries to push buttons on his 'lap top'... But he does not have the ability to hug, kiss, make much eye contact or give voluntary positive or negative responses to stimuli.

Friday, March 9, 2012

CP Awareness Month - Gtube

March is Cerebral Palsy Awareness Month. 
Children with CP have issues with muscle tone. Including the muscles used for swallowing. Some children have reflux. Some children can't swallow properly. Some children are at risk for aspirating. Henry has all of these issues. Unpredictible muscle tone made swallowing very hard for Henry. Sometimes he swallowed fine. Sometimes he would choke, inhale food, gag and vomit. A small sound could trigger vomiting. His reflux triggered vomiting. So, on Christmas on 2010 Henry had a Gtube placed to help keep his weight up and to act as a stop gap while we strengthen his swallowing 'skills'... It took more than a year to recover from the surgery (normally 6weeks) and he is still having gastro issues. 
We suspect that the muscle tone issues are also affecting his intestines and stomach... He may require more surgery.

Thursday, March 8, 2012

CP Awareness Month

March is Cerebral Palsy Awareness month. Did you know that some children that have CP also have vision issues. Cortical Vision Impairment is a disconnect between the eye and the damaged brain. The brain is unable to decipher message from the eye - even when the eye itself works perfectly. Henry has CVI.

The Cortical Vision area of the brain is located in the back, near the base of the brain. Brain damage from lack of oxygen usually effects all other parts of the brain before it reaches the CV area.

Wednesday, March 7, 2012

CP Awareness Month

March is Cerebral Palsy Awareness Month;

Spastic Cerebral Palsy.

Spastic means 'stiff' - children diagnosed with spastic CP experience very tight muscle tone. Some are unable, even with Physical therapy, to relax their muscles. They require medication, and in some cases, surgery to sever muscles groups to help prevent damage to bones. 

Some children with CP also suffer with low muscle tone. An inability to support sitting, or holding up their heads.

Henry has Spastic CP. It effects all four of his limbs. He frequently goes ridged and is unable to relax. Putting him in his wheelchair, or in the car seat is sometimes painful... even with medication.

Tuesday, March 6, 2012

March is Cerebral Awareness Month!

March is Cerebral Palsy Awareness Month! 

There are many definitions and diagnosis of CP - but very few patients experience the same symptoms. Most folks understand CP as a muscle disorder - when if fact it is a disorder of the brain chiefly due to an injury! CP is a disorder of the brain - causing muscles all over the body - including organ tissue - to not function properly. Cortical Vision Impairment is also a symptom of CP. The eyes work properly - but again, the brain doesn't receive the message properly.