Ben and I returned home from the hospital this afternoon with good news. The medicine that he’s on is doing it’s job- his EEG looks “phenomenal” and his doctors are all very happy. We’re going to have a follow up appointment with his neurologist next week where we’ll learn more. We’re going to discuss weaning this medicine and what our next steps might be. Thanks for all the good thoughts!
This memorial day weekend we whisked up to picturesque Connecticut to see our friends Brianna and Geoff get married. We also had the wonderful opportunity to catch up with some old college friends- and some of their new additions!
The bride and groom held a pre-wedding barbecue where Benjamin got his first (successful) opportunity to try out the swings. He had so much fun that he would forget to hold on!
Benjamin got all dressed up for the wedding, including a bow tie (courtesy of Maria K!) which subsequently got eaten up. His parents looked pretty nice too, if I do say so myself. He then got to go on his first train ride- the Essex Steam Train- where he got lots of snuggles from Uncle Seth. During the reception Ben had fun dancing with his mom, and ate well too! He only got a nibble of the official dinner- some of the mashed potatoes- but gobbled up his bottles, and some puffs too!
We’re now in the hospital again- planned this time- getting a follow up EEG which will let us know how well the Sabril is working to control Ben’s seizures. Please keep your fingers crossed for us!
In Connecticut for a wedding this weekend and Ben thinks it’s pretty funny to make silly sounds so we took a video to share:
Yesterday Amy and I took Benjamin into Central Park to watch a Beep Baseball game. Beep Baseball is a modified version of traditional baseball played by visually impaired and blind athletes. The baseball itself beeps, so the player can hear it and when a batter hits the ball he or she must run to a “base” which is one of two padded posts (randomly chosen) 100 feet out from home base. The base buzzes and the player has to reach it before the fielders find the ball (still beeping) and hold it up. (You can also read a great article the 2009 Beep World Series here)
The teams playing yesterday were the Long Island Bombers against a team from the radio station WFAN. The Bombers team are “a dedicated group of baseball enthusiasts from the Long Island and Tri-state area. They just happen to be blind and visually impaired.” While they play their regular season games against other visually impaired teams, most games are against teams, like WFAN, who have sighted players, using blindfolds.
The Bombers played a great game and showed some real athleticism, beating WFAN 9-1. Maybe one day Ben will play on a beep baseball team. Even if he doesn’t we are glad to know there are teams like the Bombers educating people about blindness and overcoming obstacles.
Best of all it was a beautiful day to be in the park. Ben enjoyed the grass and got in a nice long nap during the game (takes after his dad who has napped through his share of televised Mets games).
In other news, Benjamin will go back to the hospital at the end of the month for a follow-up EEG to see if the anti-seizure medicine is working. He will stay a couple of nights there. But as far as we can tell, the vigabatrin is really helping with his infantile spasms. We haven’t seen one in over a month. Fingers crossed his EEG comes back normal too.
Benjamin has been in an amazing mood lately – all giggles and smiles. He just cracks us up.
Occupational Therapy finally started and the therapist and Ben are just getting to know each other now. She is going to help Ben with feeding skills as well fine motor and life skills. I might ask him to take note – I could totally brush up on some life skills.
But most importantly – today is Mother’s Day! Happy mother’s day to all the moms out there. Ben got to spend the day with his momma, Gram and Grandma today and got lots of kisses. I personally want to wish Amy a happy mother’s day too. She is an amazing mom and I could never do this with anyone else.
It finally happened! A tooth surfaced! In fact, two teeth! Benjamin is very proud of himself. But remember those 7 months in the NICU? The months on TPN? The jaundice? Well that stuff is still following Benjamin around. You can see it in those two little teeth poking out. They are unfortunately discolored from all that stuff. So our little boy will have some brownish baby teeth – but the adult teeth will be normal color. We don’t care- because he finally got teeth! They could be purple for all we care.
Ben is also still sniffly from his cold. Amy took him to the doctor who said his lungs were clear and we should to “wait it out.” This is was a new experience for us- a doctor not recommending the most extreme treatment when something is wrong. “Wait it out?” Maybe Ben is a normal baby now!
In exciting news, Ben won a braille book from one of our favorite baby blogs “Thomas Marshall Does it All” – a wonderful blog about another little boy who is visually impaired and doing amazingly. Thomas and his family are real inspirations to us and we learn a lot from them. Jessica, Thomas’ mother, celebrated the anniversary of her blog with a contest. Thanks, Jessica!