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

Do You Hear What I Hear?

Last October before we went to the Kirch Center, one of our therapists told us to make sure we ask about Jackson's sight and hearing. She was a little concerned with his tracking and thought that maybe his eyes or his ears may be part of the problem. Personally, I had thought that both were fine but the docs at Kirch said better safe than sorry. So we began the process to get them both checked out.

We had his eyesight checked out in November (check out this post for more info). Getting the appointment for his hearing test proved to be a little more difficult. It was set up through Early Intervention and due to the timing, holidays and what not, our appointment wasn't until last week.

When we spoke to the developmental peds at Kirch, they suggested that Jackson get an ABR test due to his age. ABR stands for Auditory Brainstem Response. The test measures the hearing nerves response to different sounds. The Children's Hospital of Pittsburgh has a great description of the test on their website. The only thing about the test that made me a little nervous was that it is a sedated test. Sedation in general makes me nervous but even more so when they are going to do it to my child. But, I'd rather know for sure whether or not he had any hearing issues, so off to Rochester Jason, Jax and I went.

Jackson's appointment was at 9:30am and we were advised to make sure he didn't have anything to eat or drink after 7:30am and not to let him sleep in the car on the way there. Jackson almost always falls asleep in the car no matter where we were going, so for him to stay awake the entire time was going to be tough. Let me tell you, I had to pull out all the stops to keep him awake. Toys, books, singing, foolishness, bribery (not that he even knew what I was talking about)....I did it all. As soon as we pulled in the driveway at the Audiology office, he started to doze off. Good thing it was a bit breezy and a little chilly that day. He woke back up after we got him out of the car.

We were introduced to two doctors that were going to be part of the testing that day. They wanted to first try some behavioral testing to see if that would be enough for them to determine any hearing issues. This involved us going into a sound booth and having one of the doctors (in another room) call out Jackson's name through the sound system to see if he would look at the correct speaker that the sound was coming from. He wanted nothing to do with that. He started crying as soon as he heard "the voice". Being hungry and tired didn't really help, but I think it was more because "the voice" was LOUD!! I don't think they really checked the sound level before they started and her booming voice startled him. Heck, it even startled me. So, no behavioral testing...on to the ABR.

We were taken into another room and Jackson and I went into the sound booth, got comfortable in the chair and the nurse administered the sedative. It was called chloral hydrate and she gave it to him in an oral syringe. She warned us that most babies don't like the taste and also become irritable before falling asleep so Jackson might follow suit. But our awesome little guy swallowed all of the medicine and fell asleep peacefully.

They attached three electrodes to his head: one on his forehead and the other two behind each ear. The one that was supposed to be behind his right ear had to be moved because the fluid around his shunt was skewing the readings. So, it was placed on his earlobe. The electrodes were connected to a computer out in the other room. The nurse then took turns placing an earbud-type thing in his ears and the doctor played sounds at different loudness levels to see how the nerves responded. The test took about an hour and I was having trouble staying awake. It was nice and quiet and dark in the room...perfect conditions for a nap. Even Jason fell asleep out in the other room!

Based on the results of the test, the audiologist confirmed that at this time Jackson has no issues with hearing. Woo hoo!!!!! No follow-ups are scheduled at this time.

Side effects of the chloral hydrate included increased drowsiness and possible diarrhea among a couple of other things. He did sleep quite a bit more that day, which was totally understandable and the sedative actually helped a little with his constipation. As always, he was such a good little kiddo and handled the testing great. He even woke up before we left and batted the baby blues at the nurse and doctor and gave them a big ole smile.

After the appointment we went over to see Megan at Strong Perinatal Associates. We absolutely loved going there throughout our pregnancy and wanted to make sure that we kept in touch. The downside is that Jackson slept the whole time, but that gives a reason to go back and visit again!

We also went to Red Robin for lunch (Red Robin...yum!) and did a little shopping afterwards. Overall, a very positive day!

Read More 0 Comments | Posted By Robin

AFO Fitting

No, not UFO Sighting. AFO Fitting. AFO, you ask? Ankle-Foot Orthosis

Jax's physical therapist wants him to get some help with his dorsiflexion, provide support for his ankles and help compensate for his leg/ankle weaknesses. Right now, when Jax weight bears on his legs most of the brunt is felt by the ankle which isn't what is supposed to happen. This is due in part to his dorsiflexion issues. His feet are angled more so that his toes point towards his shins. He's been wearing shoes more often which has helped but the AFO will help so much more.

The DAFO FA is the type of brace that Jax will be using.

We got a prescription from Dr. Alling based on our PT's recommendations and have been working with Jax's EI coordinator to get him set up with the AFOs. Last week, an orthotist from Hanger Prosthetics and Orthotics came to my parent's house and custom fit Jax for his AFOs.
It's actually a relatively simple process. They basically make a cast of each leg, cut them off and then use them to create the AFO. Actually creating the AFO might not be that easy but for what Jax had to do it was a piece of cake. Below are some pics of the process:

We were able to choose the foam color, strap color, and style of the AFOs. There were many cute choices but this was definitely the one we HAD to choose:

Flames!!!

Here's what the little molds look like:

Jax, as usual, did great throughout the entire process. He played with Daddy's beard, watched what the orthotist was doing and eventually fell asleep during the casting of the second leg.

After we woke up from his nap we went out to breakfast with our parents. Yum!

It will take about 3 weeks for the AFOs to be made. He won't have to wear them all of the time at this point. Mainly for when he is playing. I'll post pics of them once they arrive.

Read More 0 Comments | Posted By Robin

The Twelve Days of Christmas Outfits: Wrap-Up

In typical Robin-blogger fashion, I started something and didn't finish it. Surprised? You shouldn't be ;)

So, here's a run-down of the remaining Twelve Days of Christmas Outfits:

Outfit # 6 - So Warm and Comfy

Outfit #7 - Penguin PJs

Outfit #8 - Good Things, Small Packages

Outfit #9 - Not exactly Christmas, but it's got red in it so it counts ;)

Outfit #10 - Cute Chunky BabyLegs

Outfit #11 - All Dressed Up

Outfit #12 - Christmas Morning Jammies

And one bonus outfit just because he's so cute:

Christmas Suit and Tie

Read More 0 Comments | Posted By Robin

Seriously, People? It's January in the Empire State

It's only natural that there is going to be snow in New York in January. It was going to happen eventually. There was no way that we were going to make through the entire winter without a storm. It graces us with its presence every year. EVERY YEAR PEOPLE!!! So, why is it that every time it snows around here everyone loses their ability to drive? Why is it so hard for people to adapt to the driving in the snow? I just don't get it. There should not have been that many accidents today.

And I know that naturally everyone blames road conditions on snow plow operators. "Where were they this morning?" "Why aren't they out plowing?" "I haven't seen them in over two hours?" "There's not enough salt on the road." "There's too much salt on the road." Blah, blah, blah. If you knew how to drive, it wouldn't be an issue now would it? If you're looking for someone to blame for that nasty white stuff on the road, blame Mother Nature. She did it. They're just trying to clean up after her.

Or if you prefer an actual human being to blame, blame the snow plow guy's boss. Or his/her boss's boss. Or better yet, the people that hold the purse strings on their budget and consistently force them to do more with less. "Keep those roads clean, but with less man hours and less salt, okay?" Chances are that snow plow person is doing the best they can with the resources available to them. And they're at the bottom of the bureaucratic food chain with little say in how things operate.

Furthermore, I say we should show a little more appreciation to those that do their best to keep our roads safe. These people are on call 7 days a week from October to April with little opportunity for time off. They work shifts that don't allow for a lot of family time. They are hardly around at home when it snows. Now I know it hasn't snowed a lot so far this year so they've been home more. But that's not always the case. When it snows, they plow no matter the time of day, day of the week, or if they already had plans. If it snows on Christmas, they work on Christmas. All while you are spending time with your family, they are not. They are out there trying to make sure you can get where you want to go safely. They pretty much give up their lives for 6 months because they need to be able to get to work in an hour if called in.

My point is this: Instead of bitching about how crappy of a job they are doing, why don't you just cut them a little slack and drive a little better? I'm sure they'd appreciate it.

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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AFOs are Here!

Do You Hear What I Hear?

AFO Fitting

The Twelve Days of Christmas Outfits: Wrap-Up

Seriously, People? It's January in the Empire State

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