Monday, June 22, 2009

Saturday went well.

It was a very busy day. We first went to NAPA to check out their open house. We made it late but we did get there and met with their head therapist who assessed Jonah and talked to us about the neurosuit. She said that there were a couple of things that encouraged her about Jonah. She said she really thought he eventually would have head control and that he just needed time to continue to develop it (still not perfect but getting better every day). She also said that his left hand which has the most spasticity then any other part of his body seemed to open up and respond if stretched well and stimulated and she said because of this she saw that with the right therapy he could overcome the challenges he faces with that particular arm.

She talked to us about the neurosuit. We asked for more specific research and she said she was aware of a mid-west Easter Seals group who recently published information on the success rate of the neurosuit used with children who have CP. She said she would try and locate this for us and email it to us. We asked about the long intervals of therapy and if it was exhausting for children as young as Jonah. She said they actually work with much younger children and always try to alter the sessions to the child's tolerance. She said that in the several years of all types of therapy that she had done, the neurosuit was the most successful in helping children. She was a huge advocate of its' use and recommended we seriously consider it. She was intelligent and confident and I was impressed by her. Shane, too, was more open about the idea after we left. We figure if insurance refuses to pay for the treatment we will wait until January 2010 so we can use part of Shane's company bonus to pay for the three week treatment. We still have heart that stem cell treatments will soon become available for children like Jonah and I will continue to call Duke University every few months to see if we yet qualify for a treatment program.

After, we went to Burbank and picked up Grandpa. Los Angeles was actually very cool (low 70's) so it was perfect for the zoo. However, they were having a huge gala that night so they closed the zoo early and we only had a couple of hours to see the animals. We still had fun and enjoyed the company of Heather Keller, the NICU nurse from CHLA that worked with both boys. It was so good to see her and her family!

After, we drove to Claim Jumpers for yummy dinner and home. We were all exhausted by the time we got home but it was a good day.

Father's Day was wonderful. Shane got lots of daddy time. I made both he and Grandpa breakfast as well as BBQ'd in the afternoon. Church was nice and Grandpa went to nursery with the boys so Shane and I could be in Sunday School together.

Today we went to OT and just as we arrived our therapist called in sick. We decided to wait for an opening and Jonah was seen by a different therapist. Noah had to skip out because they could not work in both boys. I spoke in depth with Blind Babies last week about ways to modify some of Jonah's OT goals. The good news is the bells I sewed to Jonah's socks to help him reach and pull of his socks were a hit! He giggled and loved the sounds they made and the shiny bells caught his attention and he indeed reached for them and with some prompting started to understand he needed to pull them off. Yeah! I am excited for the light box this week. Wednesday we go to Dr. Kelly (Jonah's eye specialist) and then to the hospital to pick up our light box and on the way home we go to Visalia to pick up attachments for the light box, mirrors, a Wingbo on loan until we get our own (we finally ordered a Wingbo but it is on back order for a month) and a really nice seat for Jonah. We are so blessed to have Blind Babies working with us, even if long distance is involved and we are not getting a constant therapy session. There are still options I am pursuing with this.

After therapy we raced home to change in to our swim suits. I made a fruit salad and we went to Tracy's pool. We had our small play group there. Noah took to the pool like a fish in water. I definitely plan to enroll him in swimming lessons in another year or two. Jonah, on the other hand, did not like the cool water at all. Tomorrow we will go later to a church play group (after the older, noisier kids leave) at the same pool and I am going to try and gradually adjust Jonah to the pool. Noah could not get enough!!! He played for a couple of hours and then came home and crashed out for a nice nap.

Tonight, Grandpa and I finally planted our pumpkin patch and we were able to put our sign up. It will be fun to watch them grow and in the fall I plan to have a fun harvesting play date with our play group so every child can pick a pumpkin for Halloween. It will be fun!

All in all it was a busy, wonderful day.

Tomorrow will be busy too. We have Kern Regional coming in the afternoon for our six month review. We are working on getting Jonah a stander to start using at home to really start working out his weight bearing with his legs. Our Richardson Center infant specialist and I brain stormed about the best way to get the paperwork done so we can get a stander here at home. Finally, we figured the quickest way would be to get Jonah's pediatrician to fill out a change of diagnosis and officially diagnosis Jonah with Cerebral Palsy. We have our July 29th appt with UCLA and their center for CP. We know the diagnosis is coming so this is not something new but in a way strange that we are discussing the diagnosis so matter of factly. Tomorrow I have to call Dr. Ho's office and get them going on paperwork so that we can hopefully get this stander in the next couple of weeks. My friend and her son Duncan have seen amazing results from the use of the stander; it really has strengthened his legs in a remarkable way.

We are also looking at Theratogs. Blind Babies mentioned it to me as an option last week when I asked about the neurosuit. I am looking in to it and plan to push it with Jonah's main therapist once she returns from surgery. It is interesting that when I found out about the Theratogs I also received an email from my friend Amanda (Duncan's mom) saying they were looking at using them for Duncan. I love to hear others using similar methods as it encourages me that it is a good choice, especially coming from a source like Amanda. She is a diligent, loving and educated mother who is a constant in the life of her son.

So this is where we are at. Busy, busy. Always busy! But that is so great. I so prefer to have projects, plans and goals to move us forward. Hope is a powerful motivator.

I hope you will enjoy the darling photos below. God bless you all.

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