Sunday, February 1, 2009

Just a quick update. I have to get to bed so I don't feel like a zombie tomorrow. We have a big day ahead of us. First thing, we have Jonah's therapy appointment at 8:00. Then it is home to get our new insurance in place and start calling doctor's offices. We have to get in to Dr. Ho first thing as the boys have dozens of referrals that need to be put in the system, including their therapy with Terrio. Thank goodness we have Kern Regional to reimburse us because we are having to pay out of pocket for their therapy visits until the Blue Cross referral is in place (that is $50 a half hour!)

I did want to share our wonderful visit with Christi on Saturday. She spent two hours with us and both Shane and I left feeling like we were given the best information that we have yet received regarding Cortical Visual Impairment, Jonah's condition and things we can do right now at home to help him. She lent us the resonance board, Little Room and a positioning swing called the "Wingbo" which helps especially with head control. She also gave us several toys, including a bunch of Mylar toys, pom poms and other worksheets that give ideas on toys to create for Jonah.

She assessed Jonah per the therapy model she uses (which is downstairs on our fridge but I have forgotten off the top of my head which model it is). She marked where he currently is in way of ability so we can do things in that category to push him forward. She said it is still really important that we be using one color toys with a black blanket and black tri-fold to completely enclose Jonah so he is able to totally focus on one thing at a time. She mentioned the best colors to use now are red, silver and the white/black contrast toys. She talked a lot about Mylar paper, pom poms and even taking something as simple as a chip bag and turning it inside out to put over Jonah's right hand to encourage him to grab at it with his left hand which he usually neglects.

We are slowly helping Jonah adjust to these toys. The resonance board he is doing fairly well with (she suggested we first start a few minutes a day with this before trying the Little Room) as well as the Wingbo. He is not as much a fan of the Wingbo as he really has to work when he is harnessed in but with time this will strengthen his upper trunk so we are going to stick with it. If we like the Wingbo we have it on loan until March (she asked for it back when we next travel down to Fresno because she only has two on hand).

She talked to us about the brain's function in CVI, what exactly was happening with Jonah's condition and what good, consistent therapy meant in helping him achieve goals, etc.

She also talked to me about my concerns regarding starting the boys in Nursery with our church come April (post RSV season). She suggested that I video tape the Nursery so that Noah can see the children and hear the voices as well as Jonah. This would be more specifically for Jonah as change and new environments are very, very difficult for Jonah. He has not been around a lot of other children and struggles with even Noah invading his space unexpectedly. It was a great suggestion that I plan to bring up with the Nursery leader here the first of March. That way every Sunday at the time that Nursery would start I will have my father play the video so the boys can see (Noah) and hear the children's voices as well as the teacher so hopefully it will not be such a transition once they actually attend. All in all, I am sure the process will take several weeks of us going with the boys until they are comfortable in the new environment with new children. I have a lot cut out for me, making sure that everyone understands the boys' special needs...especially Jonah. Too much is just too overwhelming for him and it is important I help others understand that.

All in all our day with Christi was a very, very productive day.

After we had to find a tire shop as, with our luck, one of our tires was dangerously close to flat (a concerned driver signaled us from the highway and our tire pressure signal was on so we knew that this was the problem). While waiting we had a yummy lunch at Marie Calendars and then packed up to head home.

On the ear infection front, I am still not convinced these poor babies are over their ear infections! Noah is still pulling at his ears and Jonah's congestion has still not gone away which has resulted in some nasty throwing up. Of course Jonah is also bringing in two new teeth which can only be adding to the issue.

Tomorrow starts a new day and I hope we will enjoy our new pediatrician. I have heard a LOT of good things about him including from the nurse who assessed our boys on Friday (she was with the school district).

Oh! That reminds me that Friday the school district met with us and the boys. Our KRC case manager was also there. She was really happy to see Noah and his pulling to stand on everything. We talked in depth about both boys and my expectations about a home teacher from the district. We will be starting a program where a teacher will come in once a week for an hour and work with both boys to augment their ongoing goals with PT/OT, feeding, etc. I really enjoyed the two reps from the school district. One, a gentleman by the name of Jim who has over 30 years of experience in education (special ed to be exact), was just wonderful with the boys. He had Jonah giggling at him and smiling like you would not believe. He did comment that Jonah has wonderful social skills when someone actually takes the time to one on one interact with him.

So that is our latest....we'll keep you posted as to ongoing events.

1 comment:

Jennalee said...

I have used those tools before, the resonance board and the little room! Love them! Everything you see can be a toy to interact with and use! I have a fabulous light bulb that I put in my little room that my kids can activate by hitting their switch, and it makes the little room look like a mini cathedral. The bulb is multi-colored! I LOVE it! Have fun with those things!