Benjamin thinks raspberries are funny

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:

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Take me out to the Beep Baseball game…

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.

LI Bombers at bat

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

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).

dad and ben at the game

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.

The whole tooth and nothing but…

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

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!

Vigabatrin

It has been very frustrating, but we are finally getting Benjamin’s seizure meds today. We’re hoping they work and they won’t have to try one of the meds with more side effects. As we said last time, the Vigabatrin (Sabril) has one pretty nasty side effect (possible vision loss) but the other options aren’t much fun. The vigabatrin works for a lot but not all babies with infantile spasm – fingers crossed.

In about a month they will bring Ben back in for an overnight EEG and hopefully see improvements in the waves. I just want to see the spasms stop – they are heart breaking. Especially because they scare him and he gets upset.

In other news, even with our stay this week, as of yesterday Ben has been home longer than he has been in the hospital!

And remember how I said I was going to write post about how much Benjamin likes peas? He also likes chicken and rice and has been really good eating solids. It is amazing, especially since he gives us such a hard time with a bottle most of the time.

This photo is from this morning and while it looks like he is upset – he’s really just biting the spoon with gusto!

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Infantile Spasms

So I’m not going to lie – it’s scary stuff. You know it’s not good news when the doctors recommend you don’t google something. After two nights on the EEG, the doctors told us that what Benjamin has is called “Infantile Spasms” (sometimes called “West Syndrome”). It’s a form of epilepsy that is pretty rare and shows up around this age. What it looks like is his head dropping towards his chest and his legs lift at the same time – it only lasts a half a second and then he’s normal for a bit and then he spasms again. This happens 10 to 20 times over the course of a few minutes and then it is over. It sometimes really upsets him too (and us).

It can be caused by a ton of things, but in Benjamin’s case it is likely because of the brain injury from his inter-cranial hemorrhage (in the occipital lobe and the cerebellum). The scary part you read about if you do google it is the long time diagnosis. There is a big connection between infantile spasms and developmental problems, especially low IQ. There is also possibly an increased risk of death (though that might be less of an issue with medical advances).

Some things say if you treat it early the risks for these things are less. And hopefully we caught it early. And since the causes of the spasms are so wide, it’s hard to say what any individual kid’s outcome will be.

And come on – this is Benjamin we’re talking about. He laughs at percentages and scary google results. He is going to be fine.

The doctors are recommending (and we agreed) to treat him with a drug called Sabril that we are hoping will work. The one big side effect of the drug however is the potential to damage vision – so no big worry there. He’ll start taking it soon once it arrives (for some reason it is difficult to get) and hope it will work quickly and completely.

Thanks again for all the support.

Benjamin on the EEG

Benjamin when he was still hooked up to the EEG

So long Fluconazole!

Six months! Benjamin has been home for six months – and while he’s still not yet at the “been home longer than in the hospital” milestone, six months does mean something great. At this month’s Infectious Disease check up at CHONY (after making sure his bones look good) they officially took Ben off Fluconazol. He has been on that orally since before he left the hospital (following the 6-week IV course {with a chaser of micafungin}) to make super-duper sure they killed the fungus, killed the fungus’s family, friends, co-workers and pets, burned down the fungus’s house, salted the earth, unfriended the fungus, cut out the fungus from the photos from spring break, etc.

So this means he is not on any major meds any more (a small dose of prevacid is all that’s left). And now we get to test my long-held theory that the fluconazole was affecting Ben’s appetite and taste (supposedly a common side effect) and was the reason he hates eating so much.

Now fluconazole has a long half-life so won’t be out of Benjamin’s system for up to four days – but it’s already been a couple of days and so far there hasn’t been any improvement. I’m still holding out hope that my theory is right and he’ll start eating like a champ again… fingers crossed.

In other news – there is no news. You might be wondering why we haven’t posted in a while – but it’s just because we are sort of in a rut here. And personally I’m finding it a little depressing. Benjamin is still working on that tooth, still working on trying to crawl, still at almost the exact weight for weeks and weeks. Amy has the right attitude and reminds me that Ben is just doing things in his own time – but I’m impatient.

Anyway – here’s a high point from the weekend when Ben briefly like food and fed himself for a little bit. Ain’t he cute?

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Learning to crawl, evaluators and check-ups

This boy wants to crawl so badly! He is almost there too. So far he is able to get on all fours by himself and pushes with his legs, but he forgets to move his arms or lift his head. So he doesn’t get very far very fast. The whole thing keeps him up at night. We find him in the middle of the night shouting, trying to crawl, but fast asleep. Once he can start to move, we are in a lot of trouble, because even just with rolling, he can get all over the place.

This long weekend Benjamin finally got his evaluations for both feeding/speech and occupational therapies. The evaluations were very interesting, and I’m glad I was able to be home for them. The feeding evaluation was done by a speech therapist because… speech and feeding both use tongues? That sounds right. Anyway, he got to see Ben puke after trying to eat solids and gave us hope that things could improve with help. It was weird going over Benjamin’s medical history again – had to dust off that part of our brain to remember all the scary details. Though looking at Ben while we walked the evaluators through all of that made it seem like we were talking about an entirely different baby. In the end both evaluators will be recommending services, and once they get accepted by the state we hope they will start quickly.

Now quickly is a relative term it seems and it sounds like we will need to push this along in order for it to happen in a reasonable time. Funding for early intervention has been cut over the last few years and they aren’t chomping at the bit to give out services. And this coming year it might get worse. The governor has submitted a budget that in effect cuts all State money to early intervention – making insurance companies cover the services. After dealing with insurance companies more than we ever wanted to I can tell you this will only lead to less services for everyone. If it ends up going through it will be an extremely short-sighted policy. Early intervention is meant to reduce costs in the long run by helping kids grow up to need less (or no) services as adolescents and adults. So yeah…

In other Ben news – he had his 12 month doctor’s check up and everything checked out. He is still small for his corrected age – just 14 lbs, 12 oz. but he’s growing. He also got some shots, including his synagis (It’s still RSV season). Other than that he was a happy healthy baby for the doc.

And now I will leave you with a cute photo of a boy and his dog:

Sleepy baby, sleepy pup

Sleepy baby, sleepy pup