CDD

Today I took Esias to the Center for Disabilities and Development to get a better assessment of his speech and oral delays.  After getting mixed reviews from some parents, I was a bit nervous.  The staff completely changed my mind, they were all great!  Esias started out being seen by the nurse for vitals, then she printed off every set of vitals he'd ever had at the Univ. Hosp. and gave them to me to take home.  Which might not seem like much, but to me, it was amazing to see how far he's come in 2.5 years!  Very fun to have that on paper.  Next a doctor called a "developmental pediatrician" came in and gave him the most complete examination I have ever seen.  She checked every inch of him and noted even small things like toes that overlap, size, shape and color of birthmarks, etc.  She was looking at anything that could point to a genetic issue.  She noticed a heart murmur that had never been diagnosed.  She spent a long time talking to me about his history and why we were there.  It was so refreshing to not feel rushed, to feel listened to, and to be heard!  Then after a bit we went to see a social worker who also listened and took thorough notes about him and his story.  After that, we saw speech pathology.  She was great!  She said that we are not getting him enough therapy through the school and diagnosed him with a couple different disorders (phonological and another one I can't remember).  She said she wanted to try really hard to make a case for our insurance to cover his therapy since his delay is so great.  Then we saw an audiologist and found out that his hearing is great.  We had never been able to get a hearing test and since he did not have a newborn hearing screening, we thought we'd better rule it out. 

Esias did great, considering I pulled him out of bed early to get him in by 7:45am and he did not to leave his beloved daddy!  The appointments lasted until noon and he was wiped when we got home.  But he did so well!  Once he realized there were no pokes, he was very pleased!

New Challenge, Same Faith ;)

We got Esias' test results back regarding the seizures he had back in August.  Esias' brain was normal according to his MRI (praise God) but his EEG was abnormal.  He was then diagnosed with Benign Rolandic Epilepsy.  Basically, not dangerous, seizures happen at night during sleep and usually go away in their teens.  There can also be tingling, numbness, and twitching of the mouth, tongue, and face.  We're wondering if this has anything to do with his apparent lack of feeling in his mouth and his drooling, but the doctor thinks those two conditions are unrelated.  I think we might find out otherwise ;)  We are good!  We are very positive about his challenges.  He is doing very well and making slow but steady progress talking and eating.  We are very pleased that he has not had any notable seizures since August.  So, we march on!  We love our little dude!
The other night, his feeding tube fell out so that was exciting!  We couldn't get it back in; I suspect its been slowing growing back from the inside out because he was growing and "out"growing the size of it.  Anyway since he rarely used it anyway we just let it go.  He can drink all the calories he needs orally even if chewing is an issue.  He is soooo happy that it's out!