Age:20 months/ 17 months
Weight: 20lbs 13 oz
Length: 32"
GI: still not eating by mouth. We have started him back on the appetite stimulant within the last 2 weeks and have noticed an increase of interest in food. He will eat an occasional piece of food, small pieces. He is getting better at controlling his gag when he has food in his mouth! (Of course we are alway happy when there is less vomit!)
He is now seeing the feeding specialist in Spartanburg. Her goal is to get Connor's weight up to the 15-20th percentile before we work on weaning his gtube blenderized foods. We have learned that Connor can't handle straight oils added to blends for easy extra calories- that is a sure fire way to make him vomit, so weight gain has been super slow! Of course he continues to get feeding therapy weekly. We do food play 3 times a day and continue to feed him (gtube) every 3 hours during the day.
Lungs: Connor had a bronchoscopy and surgery on his boy parts in October. He had the bronch to just to make sure everything was fine since he always has a dry cough. The bronch showed "paralyzed vocal chords" and mild laryngomalacia (softening of the larynx). He was then sent to an ENT to check the vocal chords without any anesthesia: the vocal chords aren't paralyzed, they are just immature. Not really sure what that means, but we will continue to monitor the chords. :) he also had a sweat chloride test done to rule out cystic fibrosis last week-that test was negative.
Connor continues to get physical therapy. He is doing fairly well with his gross motor skills. He walks, runs, squats, and climbs on tables and sofas now! He has started walking on his tippy toes again, we have recently noticed that increase within the last month.
Speech therapy is weekly as well. He has a severe speech delay. I am having a tough time with this- we try so hard to teach him, but he just doesn't focus on us long. He used to say "Mama", "miyo", and "bye bye" but he doesn't say mama now, rarely says milo, and bye bye has turned into "aba". He will occasionally do the animal sounds for a lion and cow, but he has been stuck on those 2 animals for a long time. I think I make animal noises in my sleep because I say them so much, but Connor doesn't seem to get it. I am not sure if his speech is so delayed due to the feeding issues (decreased muscle tone), immature vocal chords, prematurity, or other causes. I see him around other children his age and I get really disappointed when I hear all the things that they are saying.
Several of his therapist have noted autism like characteristics in Connor. It has been suggested that Josh and I start talking about doing an evaluation for him soon. Josh and I are discussing it, and have decided at this time we will continue doing all of his therapies and let him develop a little more. I am noticing how hard it is to teach him things because he is too busy to sit still, he is constantly on the move, slightly clumsy with tippy toe walking, has trouble focusing in one thing, does some occasional head banging in the car seat and high chair.I know he has major sensory issues and we are dealing with a wild toddler boy, so I want to give him the best I can with therapies to see how things advance. We are hoping to get another occupational therapist to help him with this soon.
WHEW! That was a whirlwind update! So I will try my hardest to update sooner. I have had a lot of people ask me how he was doing because so many people have been praying for him. I apologize for taking so long, as you can see I stay super busy with therapies, appointments, work, and everyday duties!
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