Small Wonders ~ A Preemie Place

This is Conor at 18 months-- He's expecting his sister any day now. The last few months have been very hard for Conor. He developed some severe problems with his Gastrointestinal system and developed a feeding disorder. For the last 6 months, Conor gave up eating food all together. He's on a special formula (Pedisure) which he manages to vomit 4-6 times a day. We calculate that he's getting 600-800 calories a day. Not much room for growth. He weighs about 18 pounds.

He was readmitted to the hospital for a few days when he got very dehydrated. He lost 2-1/2 pounds over three days. The next few months will be spent trying to determine the cause of these GI problems.

His GI Reflux has come back, which is compounded by a condition called dysphagia. He is still vomitting 4-6 times per day.

Dysphagia is a condition that causes swallowed liquids to be aspirated into the lungs instead of the esophogus. To avoid problems like choking and pneumonia we must thicken his liquids so he can swallow them properly.

Hypogammaglobulinanemia - which is a long word for an immune deficiency. At the time he was tested, he was not making any IgA and minimal levels of IgG which are immunoglobulins found in the blood. This explains why he was sick so often. Viruses that would mildly affect a healthy person would have a severe affect on Conor. So, in preparation for possible future problems due to his condition, we had the stem cells from Ryan's umbilical cord banked. These stem cells are the same cells found in bone marrow. Advances are being made everyday in the use of these stems cells to cure blood disorders and cancers.

Conor also has Cerebral Palsey. He has mild hemi-paresis, a form of CP, which affects the right side of his body. He has very low muscle tone (hypotonia) in his trunk and upper extremities. It is very difficult for him to sit up straight. He has spasticity in his right leg, which causes him to toe-walk. You may hear it referred to as a "short heel cord". The toe walking keeps him quite unbalanced and he falls down quite a bit.

He also has low muscle tone in his mouth. He has poor "oro-motor" skills which make it very difficult for him to bite, chew and swallow food.

Conor's fine motor skills are about 12 months delayed. He can not feed himself with a spoon and he has trouble picking up small objects.

He has asthma as a result of his BPD. When he has an episode we give him medicine through a machine called a nebulizer. We sometimes have to do this for 20 minutes every 3 hours.

He still has GU Reflux and his kidney's need to be monitored regularly.

Conor certainly is a handful! His energy is amazing -- especially for someone who eats no food and vomits 4-6 times a day!

Because of Conor's CP he now has ankle-foot orthotics (leg braces) that have helped him immensely. Because he can now keep his balance he has slowed down a little bit. He can now stand and concentrate on what he's doing instead of concentrating on standing! We bought him sneakers that light up when he walks, so he loves to wear his braces (they fit into his shoes).

In addition to the Physical Therapy he's been receiving for a year, Conor has started Speech Therapy, Occupational Therapy and Behavioral Psychology to help him with his eating. The Speech Therapist works with him to develop and strengthen his oro-motor skills. The Occupational Therapist helps him with his fine motor skills so he can learn to feed himself. She also works on desensitizing him to certain sensory stimuli and his oral aversion. The Behavioral Psychologist works with us to help get Conor past his fears of food. The goal is to make eating a pleasurable experience for him. For more on feeding problems on preemies click here.

This is Conor with his sister Ryan. They absolutely adore each other. Conor is almost 2-1/2 and Ryan is 9 months old. Its amazing to see how differently a full term baby develops in comparison to a preemie. Ryan has been walking since she was 8 months old. Conor didn't walk until he was 19 months old. Ryan was sitting up at 4 months, while Conor never really sat until well past his first birthday. He still can not sit up very straight and prefers to W-sit instead.

They are only a pound apart in weight. Conor has been doing well, but the doctors are still concerned about his weight gain. We were sent to see a geneticist who suspected that Conor had a form of dwarfism called William's Syndrome. He certainly matched most of the "symptoms" of the syndrome. A blood test was taken and for 10 agonizing days we waited for the results.
Words can not describe the relief we felt when the results came back negative.

Conor Ryan are now officially the same weight. Only Conor is 3 inches taller than her, so he is quite skinny.

We find it hard to believe that we are approaching his 3rd Birthday! Conor is quite smart for someone not quite 3. He's been able to identify 15 colors,10 shapes and the entire alphabet since he was about 2 years old. He can count to 13. Conor is very musical and can sing about 25 songs. He just started piano lessons and learned his right from his left in the very first lesson. Conor will talk your ear off and charm the pants off you.
He's an imaginative, creative, happy little boy.

Click here to see How Conor's Doing at Age 3