Finlay Bruce Ferguson

Mon, Jul 31, 2006 4:43 PM

Another INCHSTONE!

Finlay has finally figured out how to 'cruise' along the sofa. He is very shaky and wobbly, but can take 2 to 3 steps sideways. The dog is a great motivator...if Moby is sleeping on the sofa, I'll put Finlay up and say 'Get Moby' and he does his evil laugh as he's trying to 'cruise' over to the dog. As soon as he gets too close, the dog jumps up and runs away, which makes Finlay laugh even more.
He's also transitioning from one piece of the sofa to the other that is at right angles. It's more of a lunge and catch the other piece before he falls, but the motivation is there!
AND, he's figured out how to make his tricycle go forwards now! Time to baby-proof our place!

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Wed, Jul 12, 2006 7:55 PM

WE HAVE AN INCHSTONE!!

(What's an inchstone? Finlay's milestones are so far apart, that we celebrate every little inchstone on the way to a milestone)

Finlay officially sat up all by himself from laying on the floor. He rolled over onto his belly, pulled his knees into crawling position, pushed backwards then sat up! Hooray!

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Wed, Jul 12, 2006 10:33 AM

Definitions...a couple of people have asked what is hypotonia and NKH (non-ketotic hyperglycinemia) so I thought I'd post some definitions.

NKH - Nonketotic Hyperglycinemia is an inherritted metabolic disorder. Patients suffering from this disorder have elevated levels of glycine, a basic amino acid, in blood, cerebrospinal fluid (CSF), and urine. The diagnostic characteristic is the elevated ratio of glycine in CSF/blood. Most patients die in the newborn period after a course characterized by lethargy, weak cry, generalized hypotonia, absent reflexes, and periodic myoclonic jerks. Survivors are subject to various degrees of mental retardation. NKH has a very wide spectrum of severity. There are two way of classifications: one is based on clinical manifestations, and the other is based on underlying enzymatic causes. The clinical categorization of NKH falls into four broad groups: classical or neonatal NKH, infantile NKH, late-onset NKH, and the rare transient NKH. Most NKH children are of classical group. (We think Finlay has the RARE transient form)

Hypotonia - Hypotonia involves decreased muscle tone. Infants with hypotonia seem floppy and feel like a "rag doll" does when held.
Hypotonia is often a sign of a worrisome abnormality and may suggest the presence of central nervous system dysfunction, genetic disorders, or muscle disorders. Hypotonic infants rest with their elbows and knees loosely extended, while infants with normal tone tend to have flexed elbows and knees. Head control may be poor or absent in the floppy infant with the head falling to the side, backward, or forward.

Normally developing children tend to develop motor skills, posture control, and movement skills by certain ages. Motor skills are divided into two parts. Gross motor skills include the ability of an infant to lift its head while lying on the stomach, to roll over from its back to its stomach. Normally, children develop the gross motor skills which enable them to get into a sitting position and remain seated without falling over, balance themselves, crawl, walk, run, and jump by certain ages. Fine motor skills include the ability to grasp a toy or finger, transfer a toy or a bottle from one hand to another, point out an object, follow a toy or a person with the eyes, or to feed themselves.

Children who have too little muscle tone are unable to move independently. They have a hard time resisting gravity's pull on them. These children are slow to develop the skills to crawl, to sit, to pull on furniture or people to help them to stand, and to walk.

Children with hypotonia are sometimes labeled "floppy" because they have the look and feel of a rag doll. There is no clear definition of the muscles when the arms and legs are felt. They cannot maintain a hand grasp. These children are not able to maintain any position for very long, such as holding their head up or holding out their arm. When they sit, they are often slumped down on themselves and their head may rest on their shoulders because they cannot hold any position for too long.

Since the muscles that support the bone joints are so soft, there is a tendency for hip, jaw, and neck dislocation to occur. In addition, they are slow to develop a sense of balance.

There is a problem when feeding children with hypotonia. The children are unable to suck or chew adequately for long periods. They have a hypotonic gag reflex, their mouth is usually open and their tongue sticks out.

There are breathing and speech problems. Many times children with hypotonia breath very shallowly, making it difficult for them to sustain any activity, make noises, or talk for very long. They also have difficulties coughing when sick, which can lead to serious pneumonias.
Treatment - Once the cause for the child's hypotonia has been established, treatment programs can be created for the parent to help the child develop further. Treatment programs include the use of positioning techniques to teach the child how to move about horizontally, how to lie on his or her side, to sit, etc. Sensory programs to teach the child to respond to stimuli (sight, sound, taste, smell, touch) are also used. Other individualized programs and therapies can be developed once the initial diagnosis is determined.

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Sun, Jul 9, 2006 4:25 PM

July 9 2006

We got back from the cottage on Wednesday.

Finlay had a feeding study done on Thursday. He was given different things to ingest (thin liquid, thick liquid, thick puree, fruit puffs) that all contained barium and we watched as he swallowed them. We were looking to see how he was swallowing and if there was any chance that he might be aspirating. Thankfully, there is no evidence of aspiration. He does have a very immature way of swallowing, though. Instead of preparing what is in his mouth by moving it around with his tongue (creating a bollus) he just immediately swallows. So we will have to work on improving his muscle tone in his mouth and getting him to use his tongue and jaw more when eating.
He is doing lots of standing and bouncing at the couch. We are helping him walk and I am giving him lots of sensory input on his feet. He tends to lift his toes lots when he's standing so he needs some desensitizing of his feet.
We are working on stepping up onto and off of a stool. We are doing lots of work still in 4 point (crawling position), but he is still really weak in his arms and shoulders. He can get into sitting now from 4 pt without any help. Woo-hoo!
He's doing lots of experimenting with his mouth and is making lots of raspberries! (see video) We see a Speech-Language therapist on Aug 3 for an assessment. I think that the more teeth he gets, the more he experiments with sounds and his mouth.
Oh, and he's gained some weight! Yipee! He's now 8.1 kilos (18 lbs) The GI doctor wanted to see a weight gain of between 7-10 grams per day, and Finlay has been gaining 8 grams per day so far. Let's hope we can keep this up!

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