Ohh, Benji. So much to say about this little guy.
Benjamin is 4.5 now and he is REALLY trying to talk. He's made lots of sounds for several years but in the past couple of months we've seen him really trying to say words. His communication (through both "talking" and signing) has reached a really exciting point where he can tell us a lot of what he needs/wants. We have times when he wants or needs something and none of us know what it is (ohhh, that is so very frustrating for both him and us!!) but those times seem to be getting less frequent.
Benji says "grandma" "mama" "hi" "help" "night night" and "no" clearly enough for people to . He makes sounds as stand-ins for words. For example "I want apple" is uhh huh ahhha in Benja talk. He will sign "apple" along with it so we know what he's saying. :) He does that a LOT. Benji knows exactly what he's saying, his poor little mouth just can't form the words! He has lots of signs now - sometimes he makes up signs and we have no idea what he's saying, which is frustrating. We all need to expand our sign vocabulary - something for us to keep working on. I have started working through these online ALS lessons - it's fun! If you're interested in learning some ASL, check them out. We're still enjoying our Signing Time videos too.
Benji is still seizure free (Thank the Lord!) and doing great on Keppra. His neurologists are very pleased with his progress. His microcephaly is still significant and as he grows (and his head doesn't) it's becoming more and more noticeable. At his last neurology appointment we had some frank conversations about expectations for the future and his intellectual disabilities. No one knows what the future holds for Benji. We are thrilled with the progress he's made and have no reason to think he won't continue to learn and grow developmentally. We knew when we adopted Benjamin that he would likely never be fully independent as an adult and honestly, that is fine with us. Whatever happens, we know that it's God's plan and we're so grateful He brought Benji to us, he's such a blessing to our family.
His other medical stuff is stable right now. His last cardiology appointment was great, his VSD (heart defect) is still small and we were cleared for another year. He is hearing well despite the lack of hearing in right ear. His jaw is opening more and more over time - he's doing a specialized therapy to help stretch his jaw muscles and help reduce his oral aversion. It's been very slowly and we're still not convinced we are on the right track for his jaw but it's all anyone can figure out now. He will hopefully be going in soon to be sedated for a dental cleaning which is desperately needed since we can't brush the insides of his teeth very well. In his regular therapy he's working on his balance, narrowing his base of support, climbing stairs, fine motor skills, getting used to different textures (sensory issues) and the ever elusive dressing and undressing (he has no interest in this what-so-ever!). He's doing really well and we're really proud of him. His cleft palate is still un-repaired and will stay that way until they can figure out how to get his jaw opening better. He is eating many more foods and as long as it's something he can mash up without chewing, he can eat it.
Benjamin is growing so quickly, learning so much and doing really amazingly well. He is the sweetest little boy, to know him is to love him. We are incredibly proud of how far he's come and can't wait to see how he continues to grow and learn. We would love your prayers for our sweet boy as we continue to work on improving his jaw function so he can learn to talk and to eat more foods. And continued prayers for no seizures are always appreciated too. :)