Some Days You'll Never Forget: Jackson's First Set of Wheels

Jackson got to try out some equipment last Thursday. Linda from Fonte brought out a wheelchair and stander for him to try. She also brought the stroller but we didn't even bother with it. He has enough core strength and head control that he doesn't really need that. She forgot the bath chair but we saw a picture of it. That should really help with safety in the bathtub and allow him to be a little more independent while getting his splash on.

But enough of me talking. You all want to see videos, don't you? ;)

This is Jackson's very first moment in the wheelchair:

He is a natural! It was so amazing to see how he seemed to know exactly what to do with little instruction. I'll admit it. I cried. I'm a crier now. It just happens. To see how well he was doing, how much he liked it and what it means for him going forward was a little overwhelming and the tears-o-joy just started a-flowin. Luckily I was able to get it under control so that no one had to witness the full-on "Robin Cry". Trust me, you don't want to see it.

I know, enough talking already get back to the videos!

Here's Jackson's first time in the stander:

Linda said that in the 31 years that she's been doing this Jackson was not only one of the youngest that she's fit equipment for but also one of the quickest to pick up on how to use them. Way to go Jackson!

Later that afternoon he got into the stander again and was going all over the place. Check out this video:

The wheelchair belonged to someone so we couldn't take that home with us but the stander we have for at least the next week. We meet again next Friday to discuss how he liked the stander and finalize what equipment we'd like to get Jackson. Personally, I want it all! Each piece is good for him in different ways. But, insurance and Early Intervention may not feel the same way.

So, we've been documenting how he does in the stander and will continue to do so for the next week. Things like when he's in it, for how long, what he does, how he likes it, etc. We've got videos and pictures and a little journal. His therapists will be writing letters of justification and hopefully that will be enough to get our insurance to cover a portion of it and for Early Intervention to pick up the rest. However, we've been told that it's more difficult in Yates County to get funding from EI and we'll probably have to put up a fight to get it. Which honestly I think is a load of {expletive}. From what Linda was telling us it's so much easier to get these types of things approved in Monroe County as opposed to other surrounding counties. Which doesn't make sense to me, but such is life. I guess this will be a good test as to whether or not our current Service Coordinator is as committed and as good at her job as she claims to be.

We won't stop fighting until Jackson gets this. He deserves it!

But let's not end this post on a sour note. Let's look at some more pics of Jax in action, shall we?

"Hey, whatcha doin back there?"

"Are you done yet? I wanna get moving!"

The "pit crew" strapping him into the stander

Watches make a great distraction tool

"Finally! I can get movin'! "

"I'm coming to see you Grandpa!"

Rockin' Roller

Daddy and Shelley (PT) helping him out of the stander

Jackson {Happy 18 Months}

18 Months!? I can't believe it. It seems like just yesterday I was heading to the hospital.....but I digress.

Jackson actually turned 18 months on the 25th but we've been super busy and I haven't had a chance to post anything yet. That, and let's face it, we all know I'm a perfectionist and a procrastinator and that's a horrible combination. But again, I digress....

In honor of Jackson's 18-month birthday, I made some subway art for him to document some stats and milestones. I found the idea on Pinterest (I know, big surprise) and recreated it in Publisher. It took FOREVER but I think it turned out really cute. Don't you? At least it should be relatively easy to change it for future birthdays.

Jackson had his 18-month check up with his Ped on Wednesday. All-in-all it was a great appointment. We went over all of the reports he'd been given from his other doctors and discussed how all of his therapy is going and what upcoming appointments he will have. Basically, we were told Jackson is doing great and to keep up the good work.

Jackson weighed in at 28 lbs. 3 oz. which puts him in the 80th percentile. Still bigger than most boys his age but that percentage hasn't increased since his last appointment so that's a good thing. And it's definitely better than when he was six months old and measuring off the charts! It's harder for Jackson to "thin out" because he's not as active as other children.

He is now 31.5 inches long which is in the 20 - 30th percentile. This is a drop as last time he was in the 50th percentile. This is a harder to accurately measure because he's a wiggle worm on the table but the doc wasn't too concerned about it. It's possible that he was "over-measured" last time and this time it's more accurate. Weight-bearing promotes bone growth and since Jackson isn't really weight-bearing at this point he will most likely be shorter than most boys his age. This is one of the things that is Ortho is monitoring and we're hoping that by getting him a stander this will help get those bones growing.

His head size remains at 49 cm which is in the 80th percentile. Again, this is another great measurement as before the shunt placement his head size was off the charts high. Like wicked high.

Jax was great throughout the entire appointment. He gets the VIP treatment from all the receptionists, nurses and doctors while he's there. Not to brag, but he's kind of a rock star. :P Everyone loves him and loves to watch him grow. When I was checking out and making his next appointment (June 2013) I could see all the nurses across the way checking him out so we made sure to stop over and say "Hello and Happy Holidays". One of them reminisced about how they all got to take turns holding him a few appointments back when I was in to get my ears flushed. And how they remember when he was just born.....

It really warms my heart to hear that. While I am not a fan of the OB/GYN department at Canandaigua Medical Group (long waits, just a number, incapable of delivering diagnoses, among other things), I absolutely love the Pediatric department, especially Dr. Alling and his nurse Sue. Due to Jackson's Spina Bifida diagnosis there is a note in his chart that he only sees Dr. Alling which further promotes Jackson's VIP status (LOL). They are great with the everyday stuff and know when it's appropriate to refer to specialists for their opinions. They both have experience with children with Spina Bifida so that was a plus for us as well when we were deciding on a Ped for Jackson.

Okay, back to the celebration. Happy 18 Months Jackson! We're so thankful that you are in our lives!

Read More 0 Comments | Posted By Robin

Here's What's Happening In Jackson's World: Assistive Tech

A couple of weeks ago we met with Linda, a Rehabilitation Technology Specialist from Fonte Health Care Solutions, to discuss options for assistive tech for Jackson. Jackson's PT Shelley set the evaluation up as we'd expressed an interest to explore some other equipment options as Jax isn't a huge fan of the crawler we have. We had the meeting over at Korpiel Physical Therapy and all of his therapists were there (OT, PT, Spec Ed) along with his SC Gail, my parents, Jason and myself, and of course the man of the hour, Jackson.

He's at the point where he craves mobility but his body won't cooperate, yet. He can sit unassisted although he is still having issues with trunk support and endurance. He can roll around on the floor like it's nobody's business. But he's not crawling and he's only just begun to show interest in weight-bearing so standing/walking are a long ways off. However, cognitively he wants to be up and running which frustrates him greatly.

Linda observed how Jackson played and got a run-down of his current abilities from us and his therapists and discussed some of the options that might be available to him. It was decided that she would find a stander with wheels and a wheelchair for Jackson to try out.

The stander discussed, I believe, would be something similar to the Rifton Dynamic Stander (pictured below). The stander would strap Jackson into a standing position which would help to strengthen his legs and his core strength. It would also put him in a new position that he enjoys to be in but can't accomplish on his own. The stander would also have large wheels on the sides that he could propel himself. He's got great arm strength and loves to spin things so I think he would really enjoy this option, especially if it helps him get across the room. His Spec Ed therapist Phyllis also requested that the stander have a tray on it so that it would be easier for her to work (play) with him during sessions while also working his little leg muscles.

For more info on the stander go check out: Rifton Dynamic Stander

The wheelchair is just that - a wheelchair. It would give him amazing mobility and independence. Not only would he be able to push the chair on his own, but there would be longer handles on it so that we can push it as well. It would most likely look something like this, I'm guessing:

Image from: 1-800-Wheelchair.com

It was stressed that by no means does this mean Jackson isn't going to walk. This is just something to help him get around better and improve his quality of life. His therapists will still focus on getting him to crawl, stand and walk.

Some other things that we are going to try out are a bath system/seat and an adaptive stroller. Just as he does not sit assisted for long periods of time on hard surfaces, he doesn't in the bath tub either. But he loves to play and splash. We had been using the infant tub we had and that was working out okay until he grew out of it (fat man in a little tub...hahahahaha). I found a bigger infant tub at Weepeats back in September and that has been working great, but still not as fun for Jackson as he would like. The bath seat should, again, provide more independence and let him do what he loves a little easier....play! Some of the options I've seen can be found here. The stroller would provide better positioning and support for Jackson and most of them look like traditional strollers. Go here to see some of the options provided by 1-800-Wheelchairs.com.

Linda was going to find some models for Jackson to try and then we are going to meet again and see what he does with them and figure out which device would be the best fit. We're so excited to see how he reacts and what he'll do in them. I actually just got a call from Shelley today that Linda had found everything and wanted to meet up next week. So, more details to come soon!

New Hoodie Alert!

One might say that Jackson has enough clothes. That he doesn't need any more clothes, especially hoodies. I mean the kid has more hoodies than I do and I've got a lot of them.

But I saw this one on MamaBargains a few weeks ago and couldn't resist myself. It just came in the mail today and I was so excited I made him try it on ASAP. He's such a good sport!

Totally appropriate and needed, right? :)

TTFN, gotta go. Big day tomorrow...opening day of deer season! Gotta get up early and get Jason out the door. And then go back to bed. LOL.

Read More 0 Comments | Posted By Robin

{Date Night} Whip It!

Get your mind out of the gutter.....I'm not going to go all Fifty Shades with this post :P

As previously mentioned, for our 5th anniversary my gift to Jason was a series of pre-planned dates for the next year. Because the "passport dates" are on-going I can't really divulge the details yet. He's been known to get bored and actually read my blog, so I don't want to spoil the surprise of dates to come.

However, the other date each month I can totally tell you about (after they happen of course).

October's date I've playfully titled "Whip It". A while I ago I got a Groupon notice for the Roc City Roller Derby. I thought that would be totally cool to go to, but wasn't sure if Jason would like it or not. I brought it up and he was into it, but when I went back to purchase the tickets, the deal was over. Boo! That's okay though because regular ticket prices are pretty reasonable.

I never brought it up again because my intention is that these dates are going to be surprises at least as far as what we would be doing. But I at least had to tell Jason not to have any plans on Oct 13th or else he'd been gone doing something here or out hunting there. But telling him to keep that date open prompted intense, irritating interrogation until I relented and made him guess what we were doing. It was quite comical to hear his guesses because he was guessing stuff that I never thought he'd want to do - various sporting events, plays, comedy clubs, concerts, circus!? It def. gave me some future ideas!

He finally guessed roller derby. I let him pick the seats and he chose the suicide seats - front row on the floor. It ended up being really fun to sit there at least once, but if we ever go again I think we'd have a better view from the bleachers. If you ever get a chance to go see this, you should. It's a pretty laid-back, fun time. Not too over-crowded. Fairly cheap tickets, refreshments are reasonably-priced. The bouts were pretty intense. Right-up-to-the-last-minute, final-heat intense. After the last bout we even jumped up and participated in the winners lap.

As per our usual tradition, we left with souvenirs. I got a new t-shirt and Jason got a new hat.

Our swag

To get ourselves psyched for the date, we watched Whip It with Ellen Page, Drew Barrymore and Kristen Wiig. The RCRD isn't as hardcore as the movie, but that's mainly because going slower allows for more points to be earned.

I think if I hadn't procrastinated so much (as I usually do), I would've done something creative to better explain the rules ahead of time as for the most part we were pretty confused as to how they were earning points. I had also found a roller derby cookbook that I was going to use to make something for breakfast that day, but I never ended up doing that either.

We did, however, go to the rollers and revellers website and used their name generator to come up with our roller derby names:

Jason - Thorn Skeletor
Mine - FreeBird (okay, I totally kept hitting it until that one came up. Pretty appropriate don't you think?)

It was really neat to see all of the names that the skaters, refs and officials had too. How do people come up with them!?

Overall, it was a really fun date night. WROC actually just did a story on the RCRD this week. You can check it out here. The RCRD's next bout is tomorrow night. I highly suggest if out and about in Henrietta to go check it out. Tomorrow's bout is benefiting Harbor House. Harbor House is like the Ronald McDonald House but for the families of adult patients. They provide temporary lodging to the families of adult critical care patients who live outside the Rochester area and are getting treated at URMC. All of the RCRD's bouts benefit one or more of the many women's, family or children's charities in the area. How awesome is that?!

I can't wait until this month's date night. No hints this time though. ;)

Catch ya later!

Read More 0 Comments | Posted By Robin

Halloween Costume Sneak Peak!

Avast, thar thar buckos. We be busy makin' t' finishin' touches on Jackson's Halloween costume 'tis year. I'll gift ye a pair guesses as t' what he's goin' t' be! Although, I be pretty aye ye're only goin' t' need one!

So, 'til we're ready to show off th' complete costume, feel free to take a swim below memory lane 'n check out last year's costumes here.

Spy ya wit' ye eye later....gotta get back to set the sails!

P.S. Thank ye to Post Like a Pirate fer th' English to scurvy pirate translation!

Read More 0 Comments | Posted By Robin

Welcome to Holland?

I guess this is a pretty well-known essay but I hadn't heard about it until a few weeks ago.

In one of the Spina Bifida groups that I'm in on Facebook someone recently posted this essay and I thought I'd share it. "Welcome to Holland" was originally written by Emily Perl Kingsley about raising a child with special needs. I hear that it's given out a lot to new parents of a child with special needs although we never received it.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

I'm not entirely sure how I feel about this essay. I like it, but I don't. I think it's a good analogy and has a positive message, but is it entirely accurate? I'm going to have to say no. I honestly think that if I'd been given something like this before Jackson was born, I would've felt resentful for receiving it. It would've ranked right up there with hearing "Everything will be okay". Well-meaning, but not helpful at all. I'm sure it would've been given to me with good intentions, but it would've made me feel like crap for having the feelings I was dealing with at that time. So, I'm actually glad that I didn't read it until now.

While I was looking for more info on this essay, I also stumbled upon another version, or revision if you will, of this and I want to share that too. It was written by Dana Nieder and you can check it out here. I think I like "Amsterdam International" better. It hit home to all of the thoughts that were in my head and the feelings I was dealing with at the time.

For the record: I like living in Holland. It has its perks, like a little boy named Jackson :)

Read More 0 Comments | Posted By Robin

Some Days You'll Never Forget: October 4, 2012

Yesterday was a good day.

Yesterday was our Kirch day. Every six months, we spend the day at Strong Hospital on the 6th floor at the Kirch Developmental Center. Jax gets a renal ultrasound and then spends some time following up with his Developmental Ped. NP (Lorna), his Urologist (Dr. Hulbert) and this time we met his Orthopedist (Dr. Sanders).

The renal ultrasound was routine. Jax has gotten them every six months since he was born. Dr. Hulbert likes to check to see how his kidneys and bladder are growing/functioning as well as keep an eye on his kidney reflux. Jackson had fallen asleep during the ride to Strong and slept right up until the ultrasound started. Surprisingly he was pretty pleasant for having been woken up. Of course, getting the ultrasound meant he needed to be stripped down to his diaper. He's a big fan of being naked and he also enjoys the stars that are projected on the ceiling in the ultrasound room. He decided today that he wanted to help the radiographer. He rolled onto his side for the guy, helped hold the cord of the transducer and even helped moved it around for him. The radiographer said that Jax was the most pleasant helper he had all day. Way to go Jax!

After the ultrasound we made our way from the ground floor to the first floor across the lobby and up to the six floor and waited for our Kirch appointment to begin. Luckily it didn't take too long in the waiting room. Although we come fully prepared with snacks, drinks, toys, books and whatever is going to keep him happy. We've got this waiting around stuff down to a science. :)

Jackson hanging out in the waiting room

The first doc we saw was Dr. Sanders. He came in with one of his residents and introduced himself and started his initial examination. We had never met Dr. Sanders before. There was no need to at birth because Jax hadn't had any issues with bowed legs or clubbed feet or heel-cord issues. I had been told by some of the other mothers that I would like Dr. Sanders. And I do.

He and his resident (I forgot his name....sorry!) began their examination of Jackson by observing what movement he had in his legs and feet. They then tried to determine what nerve responses he had by stimulating different areas of his legs and feet. They were for the most part talking amongst themselves as Strong is a teaching hospital. They were going over which region of the spine is responsible for which nerve areas and the functionality of each region. At one point in the conversation Dr. Sanders says to his resident, "He should walk" and then starts to move onto another area.

Pause. Did you read that up there? HE SHOULD BE ABLE TO WALK!!!!!!! :)

Jason and I both looked at each other and I'm like, "Wait, back up....did we hear that right?" To which Dr. Sanders repeats, "I see no reason why he shouldn't be able to walk". He actually said it....Jax should be able to walk! He may walk a little slower than normal, but he's got everything he needs to walk. He might need some longer braces to help with stability. And there's still a possibility that he once he's older that using a wheelchair for longer distances may be easier for him. But, he should be able to walk on his own. Not exactly sure when it will happen, but it should. That's all we need to know.

We've been waiting since January 7, 2011 to find out if Jax would be able to walk or not. All along it's been, wait and see. Or, maybe. Or, it's a possibility. Or, it's too soon to know for sure. Never yes, never no. This time, it was a yes! I almost started crying tears of joy right then and there. But I kept my cool and let them continue.

Dr. Sanders wanted to get x-rays of both his spine and his hips to see if he has scoliosis or any other spinal issues and also to see if there were any issues with his hips. So back down to radiology we went. It took a little while for the x-ray orders to show up in the system, so we chatted it up with the people in radiology reception while we waited. Jax batted his eyes and smiled at just the right moments as he usually does. What a ham!

Finally everything was set and we made our way to x-ray. Jax didn't find x-rays to be as fun as the ultrasound. The main reason being he had to lie still and not move. Actually be held down. If you know Jax you know that he hate his arms being held down. So little wiggle-worm gave the x-ray techs a run for their money. Finally finished and headed back across the hospital and up to Kirch.

Dr. Sanders came back in and took a look at the x-rays. He did notice a bit of scoliosis present. However, he said it wasn't bad enough as to where it would effect him at this time. He also said that it might not even be scoliosis and that the curvature could be attributed to Jax moving during the x-ray. He wants to follow up again in three to four months with another set of x-rays just to be certain. Jax's hips look great though!

Next Lorna came in along with Angela, one of the social workers on staff. We had a conversation on how Jax has been doing the past six months. A review of the services he gets now, how he's developing, what issues we are encountering, etc. The only real issue we brought up was constipation and she agreed that the Miralax is probably the best option at this point. We've been using it since Jax's regular 15-month check-up and have had great results with it.

At one point we brought up what other therapies may be useful to Jax and horseback riding and water therapy were brought up as options. Jason wasn't a huge fan of the horseback riding suggestion as he's not too fond of horses. However, it would be great for trunk control. Lorna even joked around that she expected to see a picture of Jax on a horse the next time he comes in for a visit. I think that can be arranged. We're also going to try to see if we can get our insurance to cover a membership to the Y so we can use the pool for some water therapy. It's a long shot and I have had many run-ins with the insurance company so I'm not going to count on them covering the cost of the membership. I think we may just pay out of pocket though. It will be good for all of us.

We never did end up seeing Dr. Hulbert. To be honest, we technically haven't even met him yet. I've talked to him on the phone, but never in person. Lorna said she'd follow up with him regarding the ultrasound and one of them would call us if there were any issues.

We heard, "he looks great, you're doing a great job, just keep doing what you are doing" a lot today from everyone. I like hearing that. Not as much as I like hearing that Jax should be able to walk, but it still felt good. ;)

Our next follow up with Kirch will probably be in another six months.
October 4, 2012 - An awesome day. The day we were told Jax would walk.

Check ya later. :)

Some Days You'll Never Forget: January 7, 2011

There are some days in a person's life that they never forget. They could be personal like your wedding day, the day your child was born or the day someone died. They could be "where were you when [this] happened" days like September 11th. These days could have something to do with famous people/events/things.

For us, one of "those" days was January 7, 2011 - the day we found out Jackson had Spina Bifida. It was a Friday.

I was 19 weeks pregnant and had just gotten blood work done for the 2nd trimester screening. I had had a "normal" pregnancy. No morning sickness, felt great, no spotting, everything seemed hunky dory. When our OB/GYN had brought up the 2nd trimester screening as an option we didn't think anything of it. There was nothing wrong, but what's the harm in confirming that, right? Sure doc, let's do it. We were told "no news was good news". If we didn't hear from them, then the results were all good.

And then my phone rang.......

In a blur, I remember Dr. Page telling me that the results came back positive for Spina Bifida. What!? There isn't a family history of it and I had been taking prenatal vitamins. He said even though the test came back positive, it didn't mean that Baby Smith had SB. It just meant that there was a greater chance that Baby Smith had developed it. {I say Baby Smith b/c at the time we didn't know gender}.

Next step, schedule an ultrasound/genetics appt. with Strong Perinatal Associates (SPA), the specialists, to confirm. I learned all of this over the phone. At work. I was freaking out. Would've it been better to have learned in his office? Probably not. He would've called and said to come in and that would've freaked me out too. Either way, unexpected and unsettling news.

But now I had to tell Jason. He always was nervous about having a child because of the "what-ifs". What if our child is disabled? What if something bad happens during delivery? What if.....our child has Spina Bifida? I told him what was going on and we went to the appointment. I didn't tell anyone else what was going on. Why have everyone worry if there was not needed, right? It was just an increased chance of having a child with Spina Bifida, not a diagnosis. That's what the doc said.

January 7th, 2011 - our "D" day....Diagnosis Day. Our appointment with SPA.

We first met with Stephanie, a genetic counselor at SPA. She went through our family histories, explained the test results and gave an overview of what Spina Bifida was - the who, what, where, how and why's of it all. We had heard of SB as someone we went to high school with has it, but other than that we didn't know much. It was nice to get that explanation. Our results showed a 5% chance of having a child with Spina Bifida. 5%, that's it? That means that there a 95% chance that Baby Smith is just fine! That's pretty good odds, right?

Wrong. But we didn't find out just then. Our appointment with Stephanie was right before lunch. Their office closes for lunch from 12 - 1. We were told to go grab some lunch and then come back for the ultrasound. The ultrasound will either confirm the diagnosis or show us that everything is fine. You've got to be kidding me!! We've been worrying about this all week and now we have to wait some more. We went to lunch at Wegmans thinking "it's okay - chances are Baby Smith is just fine".

Included in all of the info that Stephanie had given us prior to the ultrasound were signs of what the techs/doctors would be looking for during the ultrasound. Terms like "lemon sign" were thrown out there and descriptions like a break in the "railroad tracks" of the spine were used. Then it happened. We both saw it. It was right there on the screen. The tech isn't supposed to say anything but we knew before the doctor came back in. Spina Bifida.

I don't even know how to begin describing what I was feeling at this point. Shock, guilt, disbelief, worry, anger, sadness. It was all there plus a lot more. Coincidentally, we also found out that Baby Smith was a BOY! So mixed in was a little happiness, but not much. The gender reveal was definitely overshadowed by the diagnosis.

It took a while for the doctor to come back in, so it was just Jason and I in the room. Alone together with our thoughts. We distracted ourselves with baby names. I had already told him that I wanted Timothy to be Baby Smith's middle name if baby was a boy. My parents only had girls so there was no one to carry on the family name unless my youngest sister became an unmarried spinster. And that's not likely to happen and Amanda and I are already married. I also pointed out that we got married on his parent's/grandparent's anniversary so we needed a little "King tradition" involved in our lives. And no offense to my parents, but King just wasn't going to work. Timothy, after my dad, was much better :) Secretly, I had liked the name Jackson for a long time. It didn't take too much to convince him that our little man was going to be Jackson Timothy.

Jason did however push for Bob. The smart ass that he is said that Bob was a good name and if our kid was dyslexic that he'd still be able to spell his name. Bob was never in the running......

So Baby Smith is now Jackson Timothy Smith and he has Spina Bifida.

We're trying to be positive, but it's not working that well. The doctor comes back in and officially confirms the diagnosis. He begins talking about what will happen during the rest of the pregnancy, how delivery will be handled, what happens after the baby is delivered, prognosis, expectations, living with SB, surgeries, Hydrocephalus, shunts, braces, therapies, learning disabilities, specialists, worst case scenarios...way too much for me to comprehend. We're still trying to take in the diagnosis.

He also mentions our options....continue or terminate the pregnancy. I know he mentions them because he has to. But we just found out we're having a boy. He already has a name. Termination was not an option. It never was an option. Before going into the appointment, we had both agreed that no matter what termination was not an option. We've loved this baby since the day we found out we were pregnant. How could we terminate just because he had SB? People live with SB every day.

We went back in to Stephanie's office and talked a little more about what we just learned. She was quick to point out that it wasn't anything we did and sometimes it just happens. And then I started bawling. I had been thinking for a week now that this was all my fault. From the time between the phone call and the appointment, I had been looking up SB on the web. {Side note: Don't do this! It's never a good idea to Google stuff like this! Trust me. Look for SB groups or something. Anything but Google.} There is no known cause of SB but there is a link between the lack of folic acid in the mother and SB in the baby. If only I had taken more folic acid before I got pregnant. Maybe that would've changed the outcome. Immense guilt flooded over me. No matter how much she tried to say it wasn't my fault, I felt like it was. I still do. That feeling never goes away.

She gave us some info that we could share with our families. Oh man, now we have to tell our families. We're still trying to process this ourselves and we need to tell them what's going on. We have no doubt that they will be supportive, but still. Just as hard as it is to hear this information, it's just as hard to tell others about it. Not because we were ashamed or embarrassed by it, just that there was (and is) so much uncertainty that goes along with it. No one in our family had ever gone through this. None of our friends. This was a new frontier. Many questions were unanswered at this point.

We left the office and headed home still shell-shocked and stunned. It was a long ride home. Personally, one of the longest hours of my life. I cried the whole way home. I just wanted to get home, curl up on the couch and sleep the rest of this day away. Not that it would change anything. We kept the info to ourselves until Sunday evening and then we told our parents. As expected they were very supportive (and still are) and also excited to learn that Baby Smith was Baby Boy Smith to be named Jackson Timothy. They took care of spreading the word to the rest of our family who were also and still are very supportive. I only told a couple of friends at first. I didn't even mention it on FB until the day before he was born. Again, not because I was ashamed. I just didn't want to talk about it. A little denial going on I guess. I had no answers to give people. I didn't want people to feel sorry for us.

I heard a lot of "everything will be okay" and "God doesn't give you what you cannot handle". I know it was supposed to help calm my fears and make me feel better, but it didn't. There were some "Why Me?" feelings going on. Which then made me feel guilty. How dare I think like that?

I don't remember exactly when it happened, but one day I just accepted it. It is what it is. I had begun telling people that if he needed a wheelchair then it was going to be one bad-ass, pimped out wheelchair. And instead of just saying it, I actually meant it. Because, the truth is it didn't matter whether or not he would be able to walk or whether or not he would have learning disabilities or issues with bladder/bowels or whatever....he was still going to be our little boy and we were so blessed to have him.

The fear of the unknown is still there. It probably always will be. But I was determined to not let that ruin the rest of my pregnancy. Because to be honest, Jax may be an only child. The fear comes back into play here. What if we have another child and it happens again? What if Jax requires more attention and the second child doesn't get as much as he should? What if....? I know.....you can't live based on "what ifs". But it's not as easy as you think.

Fast-forward to the present and I can't believe that termination was ever presented as an option. He was meant to live and we were meant to be his parents. To know Jax is not to know him as a kiddo with SB, but as a very cute, happy, healthy social butterfly who loves to snuggle, throw balls and splash in the water. Sure, he has more doctor's appointments than some kids and gets therapy 5 times a week, but he's still Jax. He may not be walking or sitting completely on his own yet, but he's still Jax. He is the best baby that we could've asked for. Reason #2 that he may be an only child: Jason is convinced that because Jackson is such a good baby (easy-going, sleeps through the night, happy 95% of the time) that a second child would be a terror. Whatevs Jason. Some day I'll change your mind. :)

Read More 0 Comments | Posted By Robin

It's a Family Tradition!

September 30th is an important date to us Smiths.

On that date 69 years ago, Jason's grandparents (Jack and Gladys Smith) got married.....
On that date 40 years ago, Jason's parents (Ken and Pam Smith) got married.....
And, on that date 5 years ago, Jason and I got married.

That's right, three generations of Smiths have gotten married on September 30th. How awesome is that? No pressure Jackson, but you could keep the tradition alive and make it four generations. LOL.

When we first started talking about getting married Jason suggested that we carry on the tradition and get married on his parent's/grandparent's anniversary. This prompted a pop quiz and although he'll tell it differently, he said they were married on Oct. 1st. So, in the late night/early morning after our friend Monica's wedding Jason called his Mom to confirm their actual anniversary (I was right, btw). Date set and the rest is history :)

I can't believe that it's been 5 years already. This is a 5 year anniversary for a lot of things. Our wedding, buying our house, me starting at Global Crossing/Level 3, Jason starting at the NYSDOT, Jason buying the truck he has now.....man, we were busy that year!

I struggled with what to get Jason this year for an anniversary gift. Anything that he needs, he buys and anything he wants is way out of my budget. As much as I'd love to buy him a set of ape-hangers for his bike or pay for a new paint job for his truck, it just wasn't feasible. I decided to peruse Pinterest (of course) to look for ideas. I came across an awesome website for date ideas and decided on a sort of "Date of the Month" type of thing. Basically, I have two dates a month planned for the next year. Twelve of those dates are all related and part of one big "Passport Date" theme. The rest are just cool ideas that I saw and wanted to do. We have date nights now, they just usually consist of us hanging out at home, without Jackson, watching movies. Don't get me wrong, I love that. But I thought I'd bring a little adventure back and have some fun. And for the most part, inexpensive fun.

I'd love to give you more details, but these are surprise dates. Jason knows we will have two "special" dates each month, but nothing more. No details, no nothing. I know from time to time that he actually does read my blog, especially if he's bored. So, if I give you the details, he'll have them too. And I can't let that happen ;) I'll fill you in on our dates after they happen.

To celebrate our anniversary, we went on a little impromptu getaway...on overnight in Syracuse. For the record, Staybridge Suites is a pretty awesome hotel chain. The rooms were very nice and the complimentary breakfast was sweet! We're not talking toast and cereal here people, actual breakfast. We were going to go out to dinner somewhere but decided that we ought to continue our hotel-staying tradition. That's right, another tradition. This one dates back to our honeymoon. We ask the hotel peeps where the best pizza place is and then grab some pizza and wings and veg out in the hotel room. I know, kinda lame that we spent our night away hanging out in a hotel room eating pizza and wings, drinking beer and watching tv but for us, it was great! No kiddo, no dog, no housework, no yard work, no laundry, no nothing. Can we say "heaven"! We took the long way home and just had a good time hanging out with each other.

Forgot the camera so this is the only pic I took (with my cell)

So here's to 5 years, 40 years, and what would've been 69 years, of wedded bliss!

Happy Birthday to Us!

A little belated, but Happy Birthday to us none-the-less!

Both Jason and I recently celebrated our ~~21st~~ 31st birthdays. Jason's was August 28th and mine was September 8th. Nothing super-crazy like last year's Dirty Thirty party. Just some good times with family and a Zac Brown Band concert.

I like to reminisce, so here are some pics from last year's hot par-tay!! And I mean hot, cuz it was like 1,000 degrees outside!

Back to the present. We usually celebrate our birthday's together but this year did them separately. I think Jason was tired of sharing his special day. LOL. We did cake and ice cream for his birthday. Jackson and I got him a target for his bow, a ton of yummy snacks and we made him a special cake - a beer cake!

Check out that bullseye!!

I did end up sharing my birthday celebration with my nephew TJ. We actually have the same birthday! We had cake (my request), ice cream and apple pie (TJ's request). Yum! For my birthday, Jason and I went to the Zac Brown Band concert at Darien Lake and I got a new ZBB shirt. Plus, we went to Tully's for dinner. Win, win. I love their chicken tenders.

TJ and I

Zac Brown Band Tour Bus

Wanna see more pics, go check out my FB page (or my mother-in-law's FB page).

Toodles!

Read More 0 Comments | Posted By Robin

Here's What's Happening In Jackson's World: 15-Month Check Up

At the end of August, Jackson had his 15 month check up with or family doc (Dr. Alling, or Dougie Downer, as Jason likes to call him). Jason really likes Dr. Alling as a doc for Jackson but hates to go see him for his own issues. But really, what guy actually likes going to the doctor? ;)

It was a relatively normal visit. Well, as normal as it can be. No issues really needed to be discussed. Just a review of his developmental milestones, discussion on on-going services, physical and shots.

The only thing that I did bring up is Jackson's constipation. I won't go into too much detail for fear of landing on STFU Parents, but it was decided to start Miralax in addition to the prune juice that he already gets. It is something that we are going to talk to the docs at the Kirch Center when we go there in October. It might be time to look into starting a bowel management program or at least get him more regular.

So, here are the 15 month stats:

Length: 31 in. (50th percentile)
Weight: 27 lbs. 2 oz. (80th percentile)
Head Circumference: 49 cm (don't remember the percentile but I'm pretty sure we're still on the charts for it, probably high-90s)

The doc was pleased to see that his weight growth has slowed and his percentages are going down. We were told "Keep up the good work! See you in three months."

I would also like to point out that it was right around 15 months that Jackson mastered rolling, both belly to back and back to belly. Woo hoo! He is really liking the new-found independence that he now has. We're realizing that we need to do some more baby-proofing around the house!

The below link is a video is from around that time-frame. This is Jackson at Grandma and Grandpa Smith's house. He rolled over to the bookshelf and tried to get some books to read. We're pretty sure he was saying "book" too! How awesome is that!

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Check ya later!

P.S. Let me know if that link doesn't work. I'm trying a different technique to load the videos. If it doesn't work, I actually upload the video to the post.

Read More 0 Comments | Posted By Robin

Here's What's Happening In Jackson's World: Speech

As promised, here's an update on Jax and speech.

At his last IFSP meeting at the end of June (check out more details here) with his therapists and service coordinator the topic of a speech evaluation was brought up. Jax's OT was concerned with this speech and thought an evaluation would be appropriate. At 12 months, he didn't have any words, didn't wave bye-bye and has a gag reflex and some sensory issues related to eating. His PT didn't necessarily agree that speech therapist would be the way to go, rather a special ed therapist would be more beneficial at this time. We pushed for the speech evaluation as his OT has known him longer. I know what some of you are thinking. He's only one; he's not supposed to "talk". Or, all kids develop at different rates. But here's the thing, children with Spina Bifida and/or hydrocephalus are at a higher risk for being developmentally delayed in areas such as speech. So, we're going to get him all the help he needs and qualifies for.

The next thing I bet you're wondering....how do they evaluate a one-year-old? Through observation of Jackson during the evaluation and parental interviews, that's how. A speech therapist (ST) came out to the house at the end of July to evaluate Jackson. Both Jason and myself were there along with my parents and my mother-in-law. We like to include them in these types of things as much as possible because they are all very much involved in his life as well and also might be able to provide insight.

The speech therapist did administer a standardized test called the Preschool Language Scale - 4th Edition (PLS-4). This test evaluates the ability to understand spoken language (receptive language) and the ability to use language in order to communicate with other (expressive language). The ST asked a series of questions for us and our parents to answer and also tried to get Jackson to interact with her. The standard score, or "normal range", is between 85 and 115. For receptive language Jackson scored 71 and for expressive language he scored 75. Overall, his score was a 70.

So, what does that really mean? At the time of the evaluation, Jackson was aged at 6-8 months when it comes to speech. He did not achieve any credit for any of the test items in the 12-17 month level for either the receptive language or expressive language.

Here are some of the things he does:

Makes eye contact when his name is spoken
Turns head to locate source of sounds
Mouths objects
Only plays with one toy at a time
Lifts arms in response to "Up"
Responds to "No-no" by laughing
Demonstrates protest by grunting, varying tone of crying, facial gestures
Communicates non-verbally by pushing items away when not wanted
Vocalizes using two different consonant sounds "d" and "b"
He will combine and say "Da-da" but does not look at Dad, therefore not demonstrating and understanding of the word.

Here are some of the things that a typical 12-17 month old should be able to do:

Follow simple commands or routines
Using objects appropriately in play
Identifying objects
Participation in play routine for 1+ minutes
Vocabulary of at least one word

So again, what does all of this mean? Jackson qualifies for speech therapy services, but at this time it was recommended that we start with special education services (SEIT). SEIT will help work on pre-linguistic skills. Since the beginning of August, he has been seen twice a week by his new SEIT therapist Phyllis. Most of the time, she comes at the same time as his PT does. That way one therapist can work his muscles, legs, trunk, etc and the other one can work on language stuff.

Recap on Jackson's services at this point: Physical Therapy twice a week, Occupational Therapy once a week and Special Ed Instruction Therapy twice a week. What a popular guy!

I can already say that the SEIT is helping. He's starting to make more sounds and seems to understand more words. No actual words yet from him, but we can tell by his grunts/noises when he is trying to say things like, "Go", "Stop", "More", "Drink", etc. He's getting there. He has learned one sign so far, "Go" and is currently working on learning "Ball". Everyone keeps telling me, "Just wait, one day he'll start talking and he won't stop!". Well, I can't wait for that day! Although someone may need to remind me when that time comes how I excited I was going to be for it. LOL.

Peace out.

Read More 0 Comments | Posted By Robin

Here's What's Happening In Jackson's World: 12-Month IFSP Meeting

I'm a little behind on this update and he's made some great progress since the end of June but I thought you'd like to know anyways....

Every six months we get together with all of Jackson's therapists along with our Early Intervention Service Coordinator and have an IFSP meeting. IFSP stands for Individualized Family Service Plan. Also in attendance are reps from Yates County and of course, our parents. We met at the end of June to discuss how Jackson is progressing and to make a plan for the next six months.

These were his goals for physical therapy (PT) for the prior six months and his current status:

Move prone to supine (belly to back) - Achieved (inconsistently)
Forward and side protective reactions - Emerging
Propped sitting with head control - Achieved
Reach for toys while upper extremity weight bearing - On-going
Monitor AFO use and tolerance - On-going

Overall, he's making progress but still delayed for his age. He is showing more trunk strength and endurance is supported sitting but fatigues quickly during unsupported sitting. He is beginning to develop righting reactions but is inconsistent with his ability to catch himself sideways and backwards.

It was decided that we would pursue some assistive tech devices to help him explore more. The first one is the crawler which I talked about here.

His PT goals for the next 6 months are:

Roll both directions consistently
Transition prone to sit
Monitor assistive tech needs
Develop righting reactions in all directions
Sit independently

These were his goals for Occupational Therapy (OT) for the prior six months:

Transition between early motor positions, strengthening by maintaining and assuming weight-bearing positions
increasing duration in supported sitting
Bringing toys to midline
Manipulating toys using two hands simultaneously
Improving overall hand use
Self-care skills (brining a spoon to his mouth, finger feeding, oral stimulation in order to tolerate a variety of food textures)

Here's what MacKenzie (his OT) had to say about Jackson:

"Jackson is a happy little boy how has become more interested in exploring his surroundings. He has recently demonstrated numerous emerging skills, such as simultaneously holding an object in each hand, bringing objects to midline, and maintaining a purposeful grasp for longer periods. Jackson has improved his release patterns when successfully finger feeding himself small Gerber puffs; he continues to use a raking pattern to retrieve the food and place in his mouth, he occasionally integrates a lateral pinch into the process. Jackson removes pegs from a pegboard and bangs a cup with a spoon with intent. When looking at a book Jackson has successfully opened and turned pages. Overall, Jackson and his family are a delight with who to work."

His goals for OT for the next six months:

Improve functional use of hands as seen by:

Transferring objects between hands
Manipulating objects for sustained periods
Holding two objects (one in each hand) simultaneously
Reaching crossing midline
Purposeful grasp/release patterns

Transitioning between positions (rolling, sitting, etc)
Eat a variety of food textures using spoon
Remove his socks using his hands

So, what does this all mean? He's getting there but still delayed in both gross motor and fine motor skills due to limitations caused by his Spina Bifida. There are no major causes for concern as these delays are somewhat to be expected. It was decided to continue with his current plan (PT twice a week and OT once a week) and also get him evaluated for speech services (read about that here). There are no changes to his AFOs at this time but once he meets the Orthopedic Surgeon in October that may change.

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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Here's What's Happening In Jackson's World: Assistive Tech

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Welcome to Holland?

Some Days You'll Never Forget: October 4, 2012

Some Days You'll Never Forget: January 7, 2011

It's a Family Tradition!

Happy Birthday to Us!

Here's What's Happening In Jackson's World: 15-Month Check Up

Here's What's Happening In Jackson's World: Speech

Here's What's Happening In Jackson's World: 12-Month IFSP Meeting

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