I have been meaning to post an update on what is going on with the boys.
A vision specialist from the school district came and met with Jonah on Thursday. After an hour of observing and talking to us his conclusion was positive but I was left frustrated. He basically said all we are doing for Jonah is working and that he is responding to his environment and showing curiosity plus his chattering (verbal) skills really excited him. However, he gave a few extra tips and confirmed those we had already been told by others and told us he would see Jonah once a month to check on him.
So what about an actual therapy plan? How do we know what we are working toward with goals and a plan in place? I am just frustrated. He definitely knew his stuff (his daughter is completely blind, a former 24 weeker herself) but he said his case load through the school is 50 and he can only do monthly check-ins with his new assignees.
So all in all, his observations were encouraging but what now?
I don't think we have the budget nor time to travel the four hour trip to get Jonah in with the Blind Babies specialist in Fresno. We could only manage twice a month and right now we just added a brand new speech/feeding therapist in our area plus now Noah is in OT with Jonah twice a week and our school district teacher comes once a week to work with the boys.
Where is the time?
Tuesday we go to CHLA (Childrens Los Angeles) for Jonah. We are getting a second opinion at the Plastic Surgery department regarding his head shape. I have no idea what to expect. For all I know they will confirm that Jonah is too old to do anything more. I think I might feel a bit devastated if they do, kind of like I failed. My worse fear is they won't like what the local orthotist did and I'll feel guilty because I wasn't able to get Jonah to LA for his helmet.
So we'll see how it goes.
Noah has officially hit his two's (in my book). He is fussy non-stop, always wants the attention, screams, yells, throws toys, you name it. He definitely is enjoying exerting his free will and independence much to our distress. In the same breath, we are grateful he is achieving milestones. He has started pushing a box on the floor and taking steps, he is very close to walking we are just waiting for that moment to finally arrive.
Jonah is generally our even tempered baby. He does have his insecure moments, mostly due to his vision issues. He gets very worried or insecure if something loud happens near him that he cannot understand and will cry, aside from that his crying spells are mostly due to hunger or dirty diapers. Not bad for the little guy. He mostly chatters all day long and mostly wakes up to chatter first thing in the morning. I would say he is our mellow baby, at least for now.
One thing I am worried about is the increase in Jonah's vomiting. He is going through almost daily vomits. His episodes always have us on edge because he shuts down due to the throwing up through his nose and it is stop and go breathing until the episode passes. Tomorrow I am calling the GI Clinic and asking about needing to change his meds. They have not been reviewed and/or changed in about 4-5 months. It might be time. That would be great if this were the answer.
Our new insurance is having us go through a speech therapy center here in town for speech and feeding evaluations/therapy. So we are starting all over again this week with a new therapist. I haven't heard that great of things about the local feeding therapy so we'll see what I think over the next month or two. Eventually we may have to just break down and head to Los Angeles for a serious feeding clinic.
Our pediatrician recommended this week that if we take the boys out to church, etc. come April we not put them in with the other kids in nursery until May. She said this season in Bakersfield has been nasty with flu and RSV so she wanted us to wait until May before they really started being around groups of children. We can still take them out to church though so it will be nice to finally start going as a family, even with all the new challenges and questions that will come with being out and about with others.
We will keep you posted and let you know how Tuesday and Wednesday go with CHLA and our new feeding therapist.
Oh, I forgot to mention our trials with getting Jonah to leave his glasses on. He constantly takes them off and bangs them on everything. They already look like they have been through war. Thank goodness we had a one time replacement warranty so we ordered new lenses and an extra coating of anti-scratch. Plus this time around I am getting a head band to keep those glasses on his face, no matter how much he pulls at them. We'll let you know what works!