Happy Mother's Day....in June

Wow! Here we are knocking on July's door and I haven't even finished blogging about all the things we did in May and June. And we did some pretty amazing stuff. Tsk, tsk.

By my calculations, we're up to Mother's Day. We had breakfast Mother's Day morning with my side of the family over at my parent's place at Camp-In-The-Woods. Sausage biscuits and gravy, oh my! The rest of the day we spent with Jason's side of the family at Genesee Country Village and Museum. Going to GCV&M is a tradition. We usually go every Mother's Day (or at least once a year).

Jackson wanted to make his Grandmas something special for Mother's Day, so we did some handprint flowers. This was our first (Jackson and myself) venture into fingerpainting. I know, he's almost two and we're just starting fingerpainting. Wait, I take that back. For Jason's first Father's Day we did a handprint/footprint thing. But, that involved three adults trying to get that done (remember that fun, Mom and Amanda? We should've took pictures of that! LOL). I was all alone on this one.

He actually had already done some fingerpainting at school just that same week because he made me this very cute artwork for Mother's Day:

Prominently displayed on our fridge :)

I consider myself somewhat brave for attempting this art project. Jackson doesn't like his hands touched and has some sensory issues, so fingerpainting isn't really his thing. He prefers to use brushes. But, I had it in my mind that we were going to do this. It would be good for both of us - we each have some sort of sensory issue to overcome. Four different colored-flowers on two separate pieces of paper equaled 8 times he would need his hand painted. Easy peasy, right?

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Happy Anniversary Jackson!

Two years ago this past Sunday, Jackson was wheeled into the OR to have his second surgery - the placement of his VP shunt. That means....drum roll please....Jackson has been surgery-free for two years! Yahoo!

Of course, I'm mentioning this momentous occasion while knocking on wood, praising God, throwing salt over my shoulder, crossing my fingers and whatever else I need to do in order to not jinx this and tempt fate.

It is entirely possible that individuals with Spina Bifida will have to face multiple surgeries throughout the course of their life. They can be related to the Spina Bifida itself such as the lesion closure (like Jackson had when he was two days old) or it can be due to one of the many secondary conditions related to Spina Bifida.

Conditions such as:

Hydrocephalus (VP shunt placements, shunt revisions, etc),
Chiari II Malformation (decompression, etc),
Various Orthopedic issues (clubbed feet, hip dislocation, scoliosis, etc),
Tethered Cord (Tethered Cord release)
Various Urinary and Bowel issues (Mitrofanoff procedure, MACE, etc)

First Day of School and Speech Therapy

We were able to get Jackson approved to go to Happiness House for a special education center-based program. We were super-excited to hear that they were able to hire a one-on-one aide for Jackson as that meant that he was finally able to start going to school!

His first day was May 9th. We had visited the classroom once before and Jackson seemed to love it so I didn't think we'd have a hard time convincing him to go. That and he had been coming to Happiness House twice a week for a couple of weeks for Speech Therapy, which by the way is going great! I posted a video on my Facebook page that my Mom took of him practicing some of his new words. It's so stinkin' cute. I watch it every time I need to smile. Jackson likes watching it too and repeating all the words.

Okay, I can't help it. I'm posting it again. Here's the video:

Okay, enough getting sidetracked by adorable videos. Back to the topic at hand. We met the rest of his class in the gym and hung out there for a little while. He had fun wheeling around the gym playing ball with all of his new classmates. When it was time to head down to the classroom, we stayed behind and watched him head down the hall. He didn't even look back. Our baby is growing up! **tear...sniffle, sniffle**

The class is two mornings a week for two hours each session. While he's there he is also getting speech therapy (one session a day). I've got to admit. That first day I anxiously awaited for the end of the two hours. I was so excited to hear how he did. And the verdict was......he had a great time!

Another Day at Kirch

In the beginning of May, Jackson, Grandma and I went to the Kirch Center at Strong for his six-month follow-up. I know I've talked about the Kirch Center before but here's a little reminder of what they do and why we see them. The Andrew J. Kirch Developmental Services Center is a clinical program that provides specialized health care services to children that have been diagnosed with a developmental delay and/or disability. They provide specialized care for issues relating to Jackson's medical conditions, monitor his developmental progress and provide information, guidance, resources and support for all things relating to Spina Bifida and Hydrocephalus.

One of the things that I like about the Kirch Center is that instead of spending all day (or several different days) going from one doctor's office to another doctor's office for appointments, all of the doctors come to us during that one appointment. Or, at least that's how it seemed for the first few visits. It was very convenient to have one appointment, get all the radiology taken care of and then see all of his specialists at once. It seems lately though that not all of his doctors are able to make the clinic appointment, which is super frustrating. I know that several other parents have complained about the same thing. I'm not sure why it's changed, but hopefully things will turn around and they can get back on track.

This time around we were scheduled to see Jackson's Developmental Pediatric Nurse Practitioner (PNP), Lorna, and his Urologist, Dr. Hulbert. Prior to the appointment we headed down to Radiology to get a renal ultrasound. The renal ultrasound checks the size and shape of the kidneys and bladder and checks for abnormalities. The ultrasound showed that Jackson's kidneys and bladder are growing at a normal rate and looked good.

Right now, Jackson does not appear to have any issues with completely voiding his bladder although this may change as he gets older. It is believed that he does have a neurogenic bladder as do most children with Spina Bifida.

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Big Bad CT

Our final stop in one of our day-long excursions to Rochester last month was Strong Hospital for a head CT for Jackson. At the urging of Jackson's Ortho (Dr. Sanders), we met with his Neuro (Dr. Silberstein) to discuss the possibility that Jackson's increasing scoliosis may be caused by a shunt malfunction. Although not common, increasing scoliosis can be a sign of shunt malfunction so that's why Dr. Sanders wanted us to be seen by Dr. Silberstein just to be sure that wasn't the case. I'm not exactly sure how the two are related and I've tried to research a little to figure it out but haven't found a suitable explanation. So, I'll take their word for it that they could be related. Better safe than sorry. That's my motto.

Dr. Silberstein didn't feel that Jackson was experiencing any shunt complications as he was not showing any of the other more common symptoms, such as:

Unusual irritability
Vomiting
Crossed eyes
Unexplained sleepiness
Headaches
Seizures
Loss in previous abilities (sensory or motor function)

However, it's been a while since he's gotten any radiology done in regards to the shunt. Dr. Silberstein thought it would be a good idea to get a baseline of how his ventricles are doing now. We could also see if there did happen to be any issues with the shunt that may be causing fluid build-up.

Read More 0 Comments | Posted By Robin

Equipment Adjustments Needed!

Jackson's TLSO is causing him to sit up straighter which is a great thing! However, we noticed right away that he was going to need some adjustments made on his equipment. Which makes sense when you think about it. The TLSO is correcting the curve in his back, therefore he is sitting up straighter when he's in his wheelchair and he's standing taller when he's in his stander. Downside, he couldn't touch his wheels! When we went back for a follow-up with Ortho at the beginning of May, we also stopped by Fonte's store and got his chair and stander adjusted.

The stander was fairly easy to adjust because there was room to move stuff around. The wheelchair on the other hand, was a little more complicated. We couldn't move the seat down anymore because it was as low as it could go. We couldn't move the wheels forward anymore or else they would rub on the caster wheels in the front. Even the company rep that happened to be there that day was unsure of how to adjust it. Finally, we decided to shave down the pad in his seat (which was fairly large to begin with) and move the back rest portion of his seat back a little bit and it seemed to solve the problem. We thought we might have to adjust his foot rest but he is still able to rest his feet on there. Phew! If we couldn't figure something out then we would've had to order different wheels. Which would've meant more insurance and EI paperwork - no thanks!

Jackson definitely wasn't his usual happy self while he was there. Although, in his defense, he had just spent all morning (3+ hours) at Dr. Sanders' office getting TLSO adjustments and x-rays. And little did he know that we also had to go get a head CT later that day (more about that later). Poor guy! We kept him busy all day that day. All in all though, he did very well. Once he found a desk with drawers he could play with, he perked up a bit. And spinning around in a chair with Mommy was pretty fun too!

While we were there we also got him a chest strap for his wheelchair. This will also help keep him upright in his chair. Before he got the TSLO, he could easily bend forward and wasn't sitting up straight while wheeling himself around. The TLSO definitely helps with that, as does the strap now too.

One of his new favorite things to do while he's in his chair is donuts! He's definitely his father's son. ;) Below is a video I posted on YouTube of him doing some donuts on the deck. This was taken a week after he got both his TLSO and wheelchair adjusted. He continue to amazes me at how well he can adapt. I hope that quality sticks with him for the rest of his life.

Read More 0 Comments | Posted By Robin

TLSO - The Good, the Bad and the Sweaty!

Now, where were we in this thing called "Another Smith Family Blog"? It has been forever and a day since I've posted anything. But, in my defense, we've been pretty busy these past couple of months with doctor's appointments, new preschool, new therapy, holidays, birthdays, work, life and a very special little boy's 2nd birthday!

According to my last post, we were waiting to go back and pick up Jackson's TLSO. Well, that appointment has come and gone and we even went back for a check-up to make sure it is providing enough curve correction. As a little recap, Jackson's ortho decided that it was time to treat Jackson's scoliosis with a TLSO (Thoracic Lumbar Sacral Orthosis - or spinal brace). Jackson's curve unbraced is 35 degrees, similar to the x-ray pictured to the right. This isn't Jackson's actual x-ray - I found this one on the good-ole interweb. I plan on getting copies of all of Jackson's radiology tests at some point, but just haven't gotten around to it yet.

Anywho, we went back at the end of April to pick up the TLSO. He was less than amused by it. He cried the first time it went on. He had fallen asleep in the car on the way up there, so he had just woken up before we went in. Combine that with being hungry, a little bored and having some random guy come at him with a contraption like that and I can totally see why he cried. I probably would've too. Oh wait, I kinda did. I swear, any time that kid cries, I tear up too. So annoying. :)

We went back a couple of weeks later and spent ALL morning at Dr. Sanders' office getting x-rays and TLSO adjustments. Jackson's first x-ray was to make sure that the TLSO was providing enough correction. Jackson HATES all things radiology - with the exception of ultrasound. I think it's because he's able to wiggle more during ultrasound than during an x-ray or CT. That, and I'm sure the weird noises and large equipment scares him. Nevertheless, he needed to have it done. Poor kiddo cried the whole time. And yup, I got teary-eyed too. It's hard to see him be so scared/upset about going through certain things and it gets to me. I know, toughen up Buttercup. I'm working on it. I try to distract myself with songs and such. But sometimes, I'm too busy trying to distract Jackson that I forget to sing "Baby Got Back" to myself. Hence, the tears start flowing. But enough about me.....

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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Happy Mother's Day....in June

Happy Anniversary Jackson!

First Day of School and Speech Therapy

Another Day at Kirch

Big Bad CT

Equipment Adjustments Needed!

TLSO - The Good, the Bad and the Sweaty!

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