Wormley's Update

[Guest guest]

My name is Sylvia and I don't usually write but enjoy reading all the emails. My son was diagnosed a week after birth as being MDS. He did not start any therapies until he was 9 mos. of age. He then started PT as he wasn't really crawling the way he should be and started Speech about 2 months ago. He has not started any OT as of yet. An EI has started coming to the house once a week. PT helped him tremendously and he is now considered in the normal range so we only have to go every other week. He has already met most of his goals that he was given a month ago to work on in the next 6 mos....walking backward, running, walking up and down stairs, sidestepping, etc... Physically he is moving right along. I can see a delay in speech but he makes sounds and says daddy, doggie, tick tock, (his brother), mama, and goes on and on babbling in his own language. The Speech Therapist thinks he will do well. Still a lot of play in therapy at this age but we use a nuk brush for bi-lateral tongue movement. He has a somewhat larger tongue and some low tone (tongue & mouth area) so we are working on getting him to keep his tongue in his mouth. He is able to but when he is relaxed so is his tongue! It doesn't seem to affect the sounds he makes at all. had an aversion to certain textures of food and since he was not moving food side to side in his mouth he would gag when he first started eating chunky things. Now he seems to be pretty good and his favorite thing is lettuce wrap filling which is full of chunks. His fine motor skills are not a problem as of yet. He has a slide in our living room and he will climb up on top and holler until I come and watch him go down. He can go down by himself but he likes the attention. I have a 7 year old son as well and the way I would describe so far is like a normal toddler but more intense. I can see about a 4 month delay as far as speech goes. He can follow commands when he chooses to such as take this to mommy or daddy, arms up to get undressed, etc. He also is very into books. He'll bring them to any of us to read to him and he will point and babble along. Right now he is really into the Halloween decorations. We have a lot of sound/motion activated ones and he likes to make them do their thing. I am currently being interviewed by all the organizations (DDD, Long Term Care, and United Cerebral Palsy comes out for the EI) I was told at age 3 we will meet with about 7 people and will start developmental pre-school probably at the same school my 7 year old goes to. The EI doesn't do much for him that I can see as of yet but we just started with that so maybe it will change. We are trying to teach him some sign language as well but the EI and Speech Therapist differ some in that area. EI is doing actual sign language but the ST said she only teaches Sign English which is what they teach them when they are only using Signing as another means of communication and assume he will be speaking more than signing. 's learning style is patterning so that has been very helpful but I can see where we will have to be careful what he sees. He copies everything! He especially likes to copy his brother. He dances (favorite is Britney Spears & Itsy Bitsy Spider; he likes variety!) and loves to play his keyboard and my piano. He will go back and forth to them. He can turn on his keyboard when he wants to play it. The biggest frustration is he won't tell you when he is hungry, thirsty, etc.. He will cry and we have to figure out which cry means what. The signing could help with this. This is what I am requesting the EI work on. Strictly communication. His health has been excellent until a month ago. He had his first ear infection/sinus infection. My other son has asthma and he was sick from age 4 months on. has been healthier than I could have ever imagined. We have seen an opthamologist twice and so far so good. We go back in 6 months for another check up. We saw an audiologist at the Children's Hospital at a year of age and his hearing is perfect so now we watch the ear infections. I can't think of anything else to relay but I'm sure that I have said enough. I know I've bunched a lot of information together. Sorry. Since I don't write much there is a lot to tell. If is awake he is trying to type on my keyboard or mess with the buttons on my printer which is what he is doing now! Here is 's most recent photo at 16 mos.

Ok, I'm done!!

Regards,

Sylvia Wormley (mommy to MDS (17 mos.) and 7 1/2 yrs.)

sdale, Arizona