A Change in the Line-Up

Jax has quite the roster of doctors, nurses, therapists and other medical professionals that are involved in his care. Among the many wonderful people that work with him is his Early Intervention Service Coordinator, Sue.

Jax qualified for Early Intervention (EI) due to his Spina Bifida and Hydrocephalus. It was through EI that Jax was evaluated by Happiness House and hooked up with his PT (Becca) and his OT (MacKenzie). EI also helped us get him his AFOs. They are also supposed to get us in contact with other services and programs that he might qualify for.

A couple of weeks ago, Sue stopped out for a visit to check-in and discuss a couple of things. One topic of discussion was a program that we may qualify for to help cover the cost of medical supplies and equipment that aren't covered by our insurance or EI. Things like wheelchairs, vehicle and/or home modifications, etc. It will be AWESOME if Jax qualifies for this b/c as he gets older we might require some of these things and they can be uber-expensive. Any little bit of assistance helps and we are truly grateful for it.

The other item of business on Sue's agenda was the idea of switching to a new service coordinator (SC). Sue has been extremely busy due to not only a large case load but some personnel changes. We've actually been noticing this because we've only ever had a handful of visits since Jax was born and that included the initial intake, evaluation and 6 month review. Also, she hasn't been able to respond to emails and voicemails as quickly as she would've liked to.

She mentioned that the new SC, Gail, actually worked for Korpiel Physical Therapy, which is the same company that Becca (Jax's PT) works for. Because Jax spends most of his days in Ontario County at Grandma and Grandpa's house, they thought that Gail would be a perfect fit. She only does EI Service Coordination and has a flexible schedule. She's very willing to meet up with both Jason and I after work in addition to during the day at Grandma and Grandpa's.

We're very sorry to see the change because Sue was very nice, but we think it's definitely for the best. We're very excited to start working with Gail.

We actually met her for the first time last night. Both Jason and I and our parents were all there. We got a little intro on what she does and her experience and then we filled her in on Jackson. Already there are a couple of things that she wants to look into, both program-wise and equipment-wise and is ready to get down to business. I really think we made the right choice. She seems more like another member of the family, rather than a clinical worker and I like that. She also seems like she will be a strong advocate to get Jax whatever he needs. She mentioned that she was probably going to annoy me because she's gonna contact me so much more than Sue did. Bring it on! :)

Welcome to the team Gail!

Jax is Getting Glasses!

Jax last saw his ophthalmologist in November. Today was a 6-month follow up to that initial consultation. If you can remember, they found that he had an astigmatism in both of his eyes which at the time didn't really affect his eyesight. However, they were going to continue to monitor him. Hence, today's appointment with Dr. Markowitz at OcuSight Eye Care Center. More information on his previous appointment can be found here.

We had noticed in the past couple of weeks that one or both eyes, at times, were starting to turn inwards so that was something we wanted to bring up at this appointment. Not the same sun-downing that we had seen in his eyes prior to his shunt placement surgery, but something that definitely seemed out of the ordinary.

Dr. Markowitz performed the same tests he did last time, including dilating his eyes. He has found that since November, his astigmatism has gotten worse and is now starting to effect his eyesight (and might also explain the eye weirdness we were seeing). The best way to correct this is for Jax to start wearing glasses. He said that it's better to get on top of this now and try to correct it as soon as possible. Sometimes, children will only have to wear them for just a few years to get everything corrected. But, with our family histories on his side, I'm thinking he'll probably wear them for the rest of his life.

We went out and tried on some glasses...oh my goodness, what a cutie! I would've taken a couple of pics but I wasn't thinking. No biggie though, soon enough you will all see them. Unfortunately, OcuSight doesn't take our vision insurance so we couldn't order them today. We stopped by Empire Vision, but for some reason Jax isn't showing up on Jason's insurance. So, after all that gets corrected we can order some glasses for the kiddo. OcuSight did give us the script, so it shouldn't be too difficult to get over to Empire Vision to pick some out. The woman who was helping us out at OcuSight gave us a bunch of tips/hints/suggestions of things to look for in glasses when working with Empire Vision. And as always, Jax did a great job and everyone loved him. He goes back to see Dr. Markowitz in two months for another follow-up.

I have no idea how we are going to get him to not take these glasses off once he gets them. I know that they are going to "hook" behind his ears, but his first instinct is to remove them (naturally). He did really enjoy looking at himself in the mirror though when trying them on in the store, so maybe we will just have to sit him in front of a mirror all day or something, lol. :)

I didn't think to ask Dr. Markowitz if the astigmatism is related to his Spina Bifida/Hydrocephalus or to his awesome family genes. I'm not sure about the rest of my family, but I know I have an astigmatism. I just had to switch contact brands to correct for mine (yikes! expensive!). I did see online though that gaze and movement problems (like astigmatism) are found in 25-33% of children with hydrocephalus. So, it's probably a little bit of both.

I'll post pics of the new specs as soon as he gets them. In the meantime, peace out.

Read More 0 Comments | Posted By Robin

Ebates! Ebates! Ebates!

Hey, you there! Have you ever heard of Ebates?

Well you should go check it out if you haven't, it's pretty awesome!

"Ebates.com is a great Web site that pays you cash back every time you shop online (up to 26% back!) Ebates works with 1,500 stores including Sephora, JCPenney, Kohl's, Home Depot, Overstock.com, Groupon, Barnes & Noble, and Walmart, so you are sure to find your favorites.

In addition to cash back, Ebates has thousands of great coupons, free shipping, and special offers from its stores, so you always get a great deal.

Membership at Ebates is free and there are no forms to fill in or points to redeem. You get paid cash back for shopping by check or Paypal. As an added bonus, we'll each get a $5 bonus from Ebates when you make your first purchase!"

I've used Ebates a few times, most recently when we bought our treadmill. I went to Ebates first, then chose Sears and voila a month or so later I got a check for $32.77 (6% cash back). If you do a lot of online shopping, this is a great way to get some extra cash. You planned on shopping online anyways, so why not go to Ebates first? They keep track of everything for you. It's free to join too.

So, go to Ebates. You won't be disappointed. :)

Check out their website here.

Catch ya later!

Read More 0 Comments | Posted By Robin

Another Day at Strong

On Thursday we made the trek to Strong for some follow-up appointments with Urology and the Kirch Center. It's not so much of a trek for me as I go to Henrietta every day for work, but for Jason and Jax it's a little more than they usually travel ;)

Jax did great on the car ride up there...he took a nap! I love it when that happens. LOL.

Our first appointment was in ultrasound to get a repeat renal ultrasound. Dr. Hulbert wanted to check on the kidney reflux, see how his kidneys were growing and check on his bladder. Jax loves to be nekkid so getting him down to his diaper was no issue at all. He had a great time getting the ultrasound. No fussing, no crying. Just laying there diaper-clad enjoying the attention from the tech. It was over with lickety-split and gave us two hours of wait time until we were supposed to be at Kirch.

We decided to go over to the Ronald McDonald House to visit and drop off some pop tabs. In case you didn't know, the Ronald McDonald House is collecting pop tabs. Check out more about this fundraising program here. I'm always willing to collect the tabs from anyone willing to donate, so let me know if you have any that you want to get rid of.

We really wanted to go over and make sure we introduced them all to Jax. It was because of them that we were able to be so close to him when he was born and during his shunt placement. It took us almost a year to get over there, but we finally did. It was nice to visit with them and as always they made us feel right at home. They are such great people and it is such a wonderful organization.

And I finally got Jason to get his picture taken with Ronald (hehe):

After visiting with the ladies at the Ronald McDonald House, we went back to the hospital grabbed some lunch (not bad for hospital food!) and headed to the Kirch Center.

While at Kirch we were scheduled to see the NP (Lorna), the Social Worker (Angela) and Dr. Hulbert. Unfortunately, Dr Hulbert had been called into emergency surgery but he did let Lorna know that he looked at the ultrasound and everything looked great! Woo hoo! Kidneys are growing fine and everything else looked good. We are going to continue with the preventive meds (Bactrim) for his reflux and follow up in another 6 months for a repeat ultrasound.

Lorna and Angela just wanted to check on how things were going and ask some developmental questions to access how Jax was doing. They were very pleased with how he is doing. He is still considered delayed (more on that from his PT and OT in a later post...eventually) but they are pleased with the amount of services that he is receiving now and don't think there is a need to increase or change it. Right now he is seen twice a week by his PT (Becca) and once a week by his OT (MacKenzie). Lorna and Angela both think he is the cutest little boy (obviously) and is doing really great.

After leaving Kirch we decided to go to the mall and window shop and search for the Easter Bunny. Daddy wanted to wander around Dick's and look at guns and such and that was really the only time Jax got a little cranky. But.....it was time to eat! :)

We found the Easter Bunny too:

A few more stores, a couple more stops, a visit and Grandma and Grandpa's and we were finally home. Long day, but a GREAT one! Way to go Jax. Keep up the good work!

Read More 0 Comments | Posted By Robin

AFOs are Here!

Jackson's AFOs came in this week. On Wednesday the orthotist stopped by my parent's house to drop them off and make sure they fit. He also give us a tutorial on how to use them properly.

Jax will be wearing these a few times a day for about an hour at a time. He can wear them with or without shoes. He's had them on a few times since Wednesday and doesn't seem to be bothered by them.

Here are some other pics from Wednesday:

This pair will last about six months unless he goes through a big growth spurt. Then it will be time for another pair. I wonder...stick with the flames or try something different?

Read More 0 Comments | Posted By Robin

Another Smith Family Blog

I started this blog as a way to keep family and friends, near and far, up-to-speed on what was going on with Jackson. Jackson was born with Spina Bifida and Hydrocephalus. When he was born, he had to have surgery to close the lesion on his back and then had a follow-up a month later for his shunt placement. My goal was to make sure everyone got an updateon how things were going and what better way to mass-update then the good ole interweb ;) And since everyone isn't on FB (WHAT!?!), I figured that a blog would be the next best thing.

Since then, the blog has morphed into a plethora of stuff ranging from date nights, favorite recipes (okay, haven't posted any recipes yet, but they are in the works), our dog, our house, my awesome hubby, projects from Pinterest that I actually complete, SB awareness and what's going on in Jackson's world. I'll be honest, it's 73% about Jackson and raising a child with SB, at least according to my last calculation. Oh, and pictures. Lots of pictures.

Welcome! Welcome!

Most Popular Post!

A Change in the Line-Up

Jax is Getting Glasses!

Ebates! Ebates! Ebates!

Another Day at Strong

AFOs are Here!

Another Smith Family Blog

Looking for an Older Post?

About Me

Followers

Another Smith Family Blog

Search