Jackson's First Vacation

Last weekend, my Great Aunt Pat and Great Uncle Bob were up from Florida visiting family in New Jersey. My cousin just graduated from college (congrats btw, Jeremiah!). Jason, my parents and I decided a while ago that it would be nice to go down and crash the party. Aunt Pat and Uncle Bob had never met Jax, in person that is. They talked on Skype a couple of times while my parents were on vacation in Florida, but seeing Jax in person is so much better! So, we made a long weekend out of it and Jax went on his first vacation.

There were a couple of different things we wanted to do in PA and NJ while we were down there. So, we stayed in Reading, PA because it was centrally located. Jax did great in the car on the way down. Grandma and Grandpa kept him busy in the backseat with toys and food and foolishness. He didn't really nap, but was good-natured and didn't get crabby until the last half an hour or so. I can't blame him though because by then I was ready to get out of the car too! I don't mean to brag, okay, I do... ;) but Jason and I are totally spoiled by this kid!

After checking into the hotel, we wet out to dinner. I don't know if you've ever heard of Shady Maple Smorgasbord in East Earl, PA but if you are ever in the area, you need to check it out!! It is AWESOME!

The biggest buffet I've ever seen in my entire life. It's 200 feet long and also has four different grill stations with steak, chicken, pork, seafood...yum! So delicious! It also has mega desserts and any type of drink you could think of (sorry, no alcohol though). It was uh-mazing! And afterwards you can go downstairs and walk your meal off in their 40,000-square-foot gift shop. You would really need a whole day to walk through there. I found Jax a sock monkey, a mini flag for my flower bed (no more St. Patrick's Day flag, lol) and a cute bib for him to wear at his birthday party.

On Friday, we fit in something for Jason...a tour of the Harley Davidson plant in York, PA. We had wanted to do it when we went to Gettysburg a couple of years ago but didn't have time. I've toured production facilities in the past for my college Production and Operations Management class, but this was the best facility I've seen. It was a free tour but for those only 14 and older so my Mom stayed out in the lobby with Jax. From what I heard, he had a great time people-watching with Grandma.

The tour lasted about 45 minutes and started with a video about HD and the plant in York. We then got safety glasses and earbuds so we could hear the tour guide talking while we were out on the floor. We went through the whole process from parts to finished bike ready to ship. They make the touring bikes and trikes at this facility. It was really interesting to see all of the technology and robotics that are used. Jason decided that his favorite job there would be the guy that gets to take two random bikes out a day, drive them around and then inspect them. I'm sure he'd get sick of it eventually, right? ;) We had to visit the store while we were there. I think it's a crime to go into a Harley store and not buy something so we each got a shirt and Jax got his first HD Tool Kit. He really likes the hammer and wrench.

Dad picked out an Irish Pub for lunch and away we went. I'm really thinking that we need to get a GPS of our own because those things are life-savers. No more mapquesting, map reading, guessing, asking for directions at a gas station....I know, I know...get out of the stone ages, they've been around for a while. Anyhoo, we ate at Coakley's Irish Pub in New Cumberland, PA. Another great meal and I recommend that place as well.

Saturday was Jackson's first trip to the zoo. We spent a few hours at the Philadelphia Zoo before heading to the NJ. I think Jason and I may have enjoyed it a little more than Jax but it was a good time. We bought a membership to the Seneca Park Zoo and I can't wait to go there more this summer.

Lions....

and Tigers....

and Bears, oh my!

We headed over to NJ to spend some time with my Aunt Pat and Uncle Bob and family. They had a cookout and it was nice to see them all. Jason really enjoyed hanging out in the garage with all the cool stuff the Mixners have in there. I think you may have re-sparked Jason's desire to get an old car/truck and restore it. Gee, thanks a lot for that! LOL. I think the best part of the trip was that my Aunt Pat and Uncle Bob got to meet Jax. I'm so glad we were able to get the four generations together. Thanks to the Mixners for letting us crash the party! I know it meant a lot to my Dad and it did to me as well.

We started heading home on Sunday, but not without stopping at Classic Harley Davidson in Reading. It's a tradition to find a Harley store near where we stay and get a souvenir, which is usually a t-shirt or shot glass.

We also stopped at Cabella's. That place is HUGE, like 250,000 sq. ft. huge! It's like Dicks, Gander Mountain and Bass Pro Shop all combined into one giant store. Not only does it have shopping, but there is an aquarium, lots of displays of animals, video games, a restaurant and a little pond stocked with fish. We probably needed a whole day to walk through that place too.

Jax did pretty good on the ride home too. Towards the end he had had enough of the car but other than that, good times! He was excited to see Duke when we got home and even got a visit from Grandma and Boppy Smith.

Specials thanks to the Elwells and Mixners for their hospitality, Jason for driving the whole weekend, my parents for going along with us (and the "Godfather" for paying for dinner), Jason's Dad for taking care of Duke for us while we were gone and Jason's Mom for making us dinner when we got home.

We had a lot of fun and I can't wait for our next vacation. Suggestions on where to go, anyone?

Read More 0 Comments | Posted By Robin

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

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.

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A Change in the Line-Up

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