HEY EVERYBODY!

Dad here, updating my little man's blog! It's 9:15am and my man is in the middle of music therapy where he is playing with guitars, bells, kazoos, pianos, and anything else you can think of that makes noise!! (Dad loves this session, haha) The goal of these sessions is to get Brandon to focus on instruction while being engaged through music. It helps him with learning body parts, how to do do up/down and side/side motions, and overall body awareness.

Brandon continues to receive weekly physical, occupational, and pool therapy. We are working hard to build strength in Brandon's upper body, torso, and legs. He is now starting to hold himself in a crawling position for a few seconds, which is excellent. Brandon continues to show off the strength of his legs, as he is able to stand up, bearing full weight on his lower body as long as someone keeps him balanced. The strength of his legs can be attributed to his time spent in the standing machine that we purchased (with your help) and mom's diligent work with him. Occupational therapy is working with Brandon on eating more solid foods and drinking. Brandon recently gave me the best birthday present ever by drinking a juice box through a straw. Despite seeming like a simple task to us, Brandon's acknowledgement of the straw, the straws purpose, and his ability to manipulate the straw by sucking to retrieve his juice is a major accomplishment.

We recently demoed a new chair for Brandon in hopes of finding something that is supportive, but forces Brandon to take ownership of his upper body to work on strength building. The other sitting machine we bought is great for feeding Brandon and working on fine motor skills, but this new one forces him to focus on his balance and body position while working and playing. The equipment is expensive, but Jenn and I have agreed to provide this little man with everything he needs. I must say, that we could not have done it without the support from family and friends from birthdays and holidays, so thank you.

A couple of final notes; Brandon had a 6-hour EEG yesterday in order to monitor seizure activity, we will let you know the results when we have them. Also, we are starting therapeutic listening treatment soon in hopes of improving our ability to communicate with the little guy.

There is something to be said for having me son the way he is... He will never disappoint me, he can only amaze me by the smallest of achievements. As long as he wakes up every morning with a smile on his face, he will have a happy and a proud father.

Jenn and I truly appreciate the support that you have all given our family, we are truly blessed to have so many of you following Brandon's progress.

Thank you,

Dad and family

A day in the pool!

Heading to pool group!
Hanging out in grammies pool - hers is my warmer than ours and B loves it!
At the EEG yesterday. He was such a good boy!

B and Anthony sleeping at Uncle Johns college graduation party.

Here is the new seat that B is getting. It's awesome and very portable so it can come with us everywhere.
He has to work much harder in this seat because there is no head or neck support and his trunk isn't fully supported.
B's first time at the beach! He did great even though it was windy.
PT stretching B's legs.

Here is Brandon working with his Physical Therapist Meeghan on the new bench we received through a grant. He can work on sitting and kneeling with it. We love it!

Brandon and his cousin Anthony enjoying a day at the pool.
Here is our family in Newport.
Here is Brandon working with his physical therapist and Orientation and Mobility therapist to find ways to position B so he is working with his vision and strength at the same time.
Working on sitting independently.

May in RI

Hi everyone,

We are waiting for Brandon's physical therapist so I thought I would write a quick update. We will be starting swim group on Friday! It is through early intervention and there will be therapists in the pool with us (yup I will be going in the pool with him!). I am so excited for this - we were on a waiting list. Music group is over until September so it is a perfect time for this group to start up. His Speech Language Pathologist (SLP) is happy with the progress he is making with his oral motor program. He is tolerating lots of texture and bigger chunks. She is also working on lip closure around the spoon (instead of taking food off with his teeth). She has brought us lots of cool things to work with such as spoons, bowls, honey bear cups... Music therapy is going well - he does so well with her! I am trying to get it twice a week since this is something that I cannot duplicate and work on with him daily ( I play no instruments and have a horrible voice!)

Brandon is talking a lot. He is really using his tongue and different positions with his mouth. We love hearing the new sounds that he comes out with. Keith and I took him to the aquarium yesterday. We love it there! Mystic aquarium is a half hour from our house. It is nice and dark inside and the tanks are all lit up. He was looking in the shark and the sting ray tank. Were not sure what he is seeing, but his eyes were definitely open and looking. We bought him a really cool star fish at the gift store that is bright orange and has some nice textures on it.

Time for PT!

Here is the new positioner seat that we are finally getting! B is going to sit so much better!

Hanging out in my bumbo seat!

B, mommy and daddy at the aquarium.

Daddy teaching B about the fish!

Johns graduation in Newport. Congratulations Uncle John!

Eating my raviolis. YUM!

19 Months

Hi everyone,

Just wanted to update everyone on how well our little man is doing! He is now 19 months old - can you believe it. He is finally getting over a really bad ear infection and is on day 19 of antibiotics (the amoxicillian didnt work after 9 days of it) and is ready to work really hard.

He is doing very well with his oral motor program. He is able to eat a half of a dry cheerio without choking and not using his tongue as much as he used to when taking the food off the spoon. He is also working hard on holding his spoon and eating food off his fingers. He is also all done with his bottle!!! We are only using sippy cups now and he is doing very well with it. He's such a big boy!!!

Brandon wants to talk so bad - he has been talking up a storm and trying out all new sounds. He also loves to make his noises while he is biting on his hand from his 2 new teeth that are coming in! He is also interacting with us a lot and is always so full of smiles. We had music group this week and they had him sit on a plastic bucket with his feet on the floor at a 90 degree angle. He has a blast! (grammie Anderson came with us too!). It was the most I had ever seen him participate in this group. He was holding the instruments and banging his hands and talking. A lot of the time he gets too comfy in my lap and falls asleep so this was AWESOME! At one point I was moving him around to dance while he was sitting and he stood right up! He also has been initiating standing a lot more. His neck is much stronger we just have to work on his balance and trunk strength now.

We are going to a vision conference this Saturday. It is at Perkins School for the Blind in MA. Keith will be on the father panel (its a small group of fathers who will answer questions and talk to other families. I have been asked to facilitate the CVI group parent support group! It should be fun and we got a lot of good information last year and met some really great people. I have also been voted in to the Governors Board for Children with Visual Impairments. This is a group that consists of vision teachers, eye dr, tech people and so on. Our job is to write the agenda for RI and find ways to implement it. It meets once a month and I have already learned so much.

Hope everyone is well. xoxoxox

This is B Speech pathologist and Parents as Teachers working with him on his oral motor program.

We switched Brandons stander around so he wouldn't have any back support (prone) - his neck is getting much stronger!

Daddy's helping me learn how to feed myself!

Spring Time!

Hi everyone -

Happy Easter! Hope everyone had a wonderful day. We spent it with family in Connecticut and had a great day (and ate waaaayyyy to much!) We are all dry now from the huge rainstorm. We were very fortunate to have had only a little water in our basement and nothing was damaged. A lot of people around us weren't as lucky.

We toured Perkins a few weeks ago and loved it! They put vision and language and communication first. It would be a wonderful opportunity for Brandon, but now we just have to see if the town will place him there. It is a verrrrrry expensive school. We also participated in the Hasbro Radioathon. My mom and I were interviewed by WPRO 630AM. It was a lot of fun (a little nervewracking at first though!) They raised more than $450,000 in 2 days!!!

Library group started back up for us. Today I got a library card and took out some books for Brandon. He is finally getting more teeth - he has a total of 6 now with one that is coming through as I type. I feel so bad because I can tell that it is hurting him. We have been taking advantage of the beautiful weather and doing lots of tummy time and sitting outside. He loves to grab the grass with his hands, but doesn't like it touching his feet - he is tooo cute! He scrunches his legs up like a frog when I try to have him stand in it!

Hope all is well with everyone. We are going to tour another daycare/preschool tomorrow that is closer to home (Cranston). I'll let you all know how it goes!

xoxox Jenn, Keith and Brandon

B is very tired after a great Easter!

Brandon and grandpa on Easter changing into cooler clothes - what a beautiful day! (he has his little chain on - sooo cute!)

Brandon and his great grandpa

Practicing sitting in the grass. He's such a big boy!

The fresh air made him tired!

B hanging out with his cousin Anthony who really wants a turn hitting the bell!

This is where the radioathon was and were my mom and I sat when Dan Yorke (pictured) interviewed us.

Brandon getting his 4th haircut!

This is the new positioner seat that we are looking at. He fits very well in it. Right now he leans his head almost on his tray when he is in his highchair. He needs a more supportive chair.

New Update

Hi everyone -

We have a few things coming up that we want to let everyone know about. My mom and I will be touring Perkins School for the Blind on Thursday to take a look at their early learning program (preschool). They have very small class sizes and the specialize in vision and multiple disabilities. The other thing that we are looking forward to is the Hasbro Radio-athon.. I have been asked to speak about our experiences with Hasbro and how much they have done for us. It will be this Friday (March 26) at 1:00. I will send the link to the website - I am not sure which radio station I will be on! Brandon's picture is on the station websites that will be hosting this event - http://www.92profm.com/article.asp?id=1739077 .

Today we started music group. Brandon loved it! He was wide awake and smiling and banging his hands on his legs. He loves to listen to other kids and noises around him. He is also getting better at grasping and holding things. Yesterday he picked up his tambourine with two hands, held it in the air and flipped it over. It was so cool!

We have a lot of new pictures to post that will show everyone some of the things that we are working on with Brandons vision. My brother John made stands so we could hang things for Brandon to look at. We got this idea off a friends website (they made one for their son). Enjoy!

And thank you to my wonderful family for taking such good care of Brandon when I was sick last week! xoxoxox

Here's Brandon and his cousin Anthony having a sleepover!

Brandon is playing his bells and singing with his music therapist.

Here he is looking at his beads while working with his physical therapist.

This is one of the new setups we have for getting Brandon to use his vision.

Mommy even makes me use my eyes while were taking walks!

Here is another new set up.
B is doing well with blue lights.

Pittsburgh Trip

Hi everyone!

We just got back from Pittsburgh late last night. It was a good trip - a little too short though! We got some very good feedback from Dr. Christine Roman-Lantzy. She told us that we need to get Brandon to a place where he is locked in visually. It's basically as is he's waiting or figured out that he can still get what he wants without using his vision. (he is satisfied where he is) He needs to see that if he looks he can get what he wants (such as a bottle or a toy). A lot of the things that I have been working on with him have been reinforced with sounds, instead I need change to more intrinsically visual things. I also need to bombard him with things to look at where ever he is. (while laying in crib put lava lamp near him, shiny mylar on his highchair, shiny balls in bathtub, etc) I am also going to try different color objects for him to look at such as blue or gold (instead of the red we have been using). He responded when she used a blue flashing light with him. We have a lot of work to do! She kept saying "I know it's in there!" She is such a wonderful teacher! She spent the whole appointment with him on the floor taking different toys and objects out of her suitcase and trying different ways to get him to glance at them.

We had fun being in Pittsburgh as well. It's such a beautiful city. We got lost on the way to and from the airport so we were able to see lots of different places lol! Next time we go we are going to spend more time there and maybe go see Dr Roman two days in a row for shorter appointments so she can see him at different times. This time he was a little sleepy since he was up late the night before (my little night owl). He did so well on the plane both times, he was awake and didn't cry at all - he such an awesome traveler. Time to go finish unpacking!

I am still trying to figure out this blog, I am not sure if it notifies people when I put up a new post like caringbridge did. I will send out an email to everyone when I post new comments. If you would like to be on this list send me an email with your address. My email is janderson924@gmail.com. Also, you can leave comments on this page if you click on the comment button at the very bottom of the post!

Love to all! xoxox

This is Brandon on his wingbo. It helps him keep his shoulders in while getting his neck and upper back stronger. He found his thumb in this picture!

Auntie Katie taught Brandon how to use a straw! He did an awesome job with it! We are going to try to use straws instead of sippy cups.

This was a cool statue on the side of the road in Pittsburgh. We were on top of a cliff overlooking the city (lost).
Trying to find the airport - B was such a good boy. He loved to dance to the music, especially when the Black Eyed Peas came on!

Mommy and B on the airplane.
B also got to sit with his Uncle John and Auntie Laura.

New Page!

Hi everyone!

Welcome to Brandon's new page! I am excited to be able to add lots more pictures with each post. I will try to include pictures of things that Brandon is working on with his therapists as well as some cute pics of him!

Some quick updates:

We leave for Pittsburgh on Monday to go back and see Dr. Roman-Lantzy (the cortical vision impairment specialist). Were looking forward to it - my mom, sister Laura and brother John are coming with us also!

We are going to be starting speech therapy through Early Intervention next week. Our Occupational Therapist is going to be the one doing it. She will come twice a week now - one day for fine motor skills and the other will be for oral motor and feeding. She is going to order lots of cool things to go along with the feeding.

Brandon is doing so well standing, especially with his AFO's (leg braces) on. We are so proud of him. He is also getting better at sitting up tall! He works so hard!

Here are some pictures of Brandon working with his physical therapist on the big orange ball and his music therapist! Enjoy!