Look! The third post this week! I know! “But Joe, you didn’t write like… forever, and now you are writing all the time.” Yeah, yeah, I know that too. It might not last, I won’t lie, but I told myself I wanted to make an effort to write more and you lucky(?) folks are the beneficiaries(?) of that.
And why haven’t I been writing? Well, the blog is called “All About Benjamin” and to be honest, over the last few months telling you all about Benjamin might have been a bit boring for you and a bit depressing for me. No, nothing bad has been happening with him. Outside of a couple of colds, Ben has been doing well. But his developmental progress has been so slow there is not much to tell you. I get worried about it, and a little sad and it didn’t sound like something fun to write about (though here we are).
When we first started the blog we used it to share the day-to-day and sometimes hour-to-hour updates and a bit of a pressure valve where we could write all the scary medical stuff down and give ourselves a little distance from it. But mostly it has been a place to share Ben’s successes (and cute photos). Maybe it’s ok not to feel like we always need to be cheerleaders with good news and talk about other stuff too (but of course still post cute photos of Ben).
So first things – on the development side, here are the facts… Ben is still not crawling really, or walking without holding on – but he can pull himself up onto things and cruise like a champ. Ben doesn’t have any words yet, but babbles and laughs (a lot). Ben can’t handle food any more solid than a puree (and some days that is too much for him too) but he is so much better with milk and can drink it out of sippy cups. Ben thinks zebras are very funny.
Ok I know even here, when I said I wouldn’t feel the need to always cheerlead, I am putting happy spins on everything. There is obviously progress and Ben is an amazing little guy. I’m just frustrated. I want to see Ben doing the things the other kids his age are doing. I want to know that he can talk and walk rather than just hoping he will.
And before you say it – I know, I know I know. I know we are super lucky to even be where we are today. I know Ben has a lot of challenges to overcome and that he’s doing great. It won’t stop me from wanting more though…
As the clock digitally clicks towards midnight, I want to slip in a post to wish Joseph a happy father’s day. Yesterday Joe got his present- a day on the Brooklyn waterfront with good friends drinking craft beer- and today we got to visit our fathers (and see some wonderful old friends in the process). Joe is an amazing father and partner (and does the heavy lifting on this blog!), and I’m so glad I get to share this adventure with him!
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.
Imagine hitting a ball based only on sound
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.
LI Bombers pose after beating WFAN 9-1
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).
The boys enjoying the game
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.
Ben is all smiles
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!
Ben loves his momma
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!
So while last week was a lot of fun with all kids- there is one things kids do better than anyone else: spread germs. By the end of the week every little boy in the house, including Benjamin, were snot monsters. Boogers flowing freely like… well… gross viscous rivers. Ever see Ghostbusters 2? Like that.
For those keeping score this is Benjamin’s first cold. To make it this long it has taken gallons of purell (not to mention a few months of living in a plexiglas box).
So far it hasn’t been so bad – he’s pretty stuffy and a little bit cranky, but no fever and only a little coughing. The doctor didn’t even want to see him. This is quite a change of pace from when he used to get put on 3 antibiotics and have a full blood work up if someone said “cold” near him back when he was in the hospital.
That said, we hope the cold goes away soon. Being sick is no fun (and he’s been sleeping poorly through all this).
As promised other updates:
Ben’s spasms have really been improved by the vigabatrin. Only a few days after he started taking it the spasms are virtually gone. The only lingering weirdness is at night. We have caught him a few times with spasm-like movements in his sleep. Nothing like he used to have, but it is still not great. Anyhow – we’re hoping that goes away or maybe following his next EEG they adjust the dosing and make him 100% spasm-free.
As for eating – can you believe the boy who would only eat if you were sitting in his glider, with the lights off, the sound machine on and if he were 85-90% asleep, had his best feeding week ever while we were in OBX? Incredible! He even finished full bottles in rest stops! All this eating had him gain a half a pound so – making him now over 15 and a half pounds! Where does that put him on the chart? Well – not quite on it yet. Maybe if he keeps eating we can get him up to 1%.
And lastly – he is completely sitting up on his own now. You lay him down on the ground, turn round, and there he is sitting up! How did he do that?