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

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

It's been a while since I filled you in on Jackson's world. Let's start with his eyes....

Jackson had a follow-up with his Ophthalmologist at the end of July regarding his glasses. I think we were in and out in about 10 minutes, which is kind of irritating because his doctor is in Rochester at OcuSight. So, it was an hour up there and an hour back for a 10 minute appointment. Oh well, we really like Dr. Markowitz and his staff and they really like Jackson so we'll deal with it. Daddy tagged along for this appointment so we all went out to lunch afterwards. Win! He's only wearing his glasses any where from two to six hours a day and should be wearing them more regularly. But, you try keeping a pair of eyeglasses on a 15 month old all day. And when it's super hot out, don't even bother trying. I can't blame him though, I hate wearing my glasses when it's hot out. That combined with his inability to understand "No" and the fact that they make excellent teethers have made it a little difficult. But we'll keep trying and eventually he'll get it.

Dr. Markowitz wasn't a huge fan of Jackson's frames as he felt they were too big for him. As in, they were more of a preschool frame rather than an infant/toddler frame. However, Jackson has the head of a preschooler and there wasn't much of a selection at Empire Vision when we went to pick them out. So, that's the best we could do with the selection and insurance that we have. In talking with the Optician (Barb) after the appointment, she wasn't concerned about them and thought they were just fine. Barb is awesome! We really like her. She helped us out by putting on the cable temples after we got the glasses from Empire Vision. The cable temple is the little hook on the back of his glasses that go around his ears that help them stay on better. And they totally do help. Without them, we'd be fighting with Jackson even more to keep them on. If we can't get him to keep them on for longer periods of time then we may have to think about switching to a band or something to keep them on his head. I really like how she recognizes us even after only being there a few times. I mean, really though, it's Jackson that she recognizes. But that's okay, I'm getting used to being recognized by my kid. I mean I already have practice being recognized only as Jason's old lady so it's not that much different. ;) LOL

We go back again in December for another follow-up. I did ask Dr. Markowitz how he knew what prescription Jackson needed and it's pretty similar to what I've been telling people who've asked. He used a retinoscope and placed lenses of varying power in front of Jackson's eyes and measured the reflection to determine his prescription. That and he's pretty good at his job and knows what he's doing (yes, he actually said that when I asked him how it was done). I found a really good article online which explains the eye exam process a little better. Check it out here.

We also asked whether or not his astigmatism in each eye were related to his Hydrocephalus or if it was more genetic. And the answer is....ding, ding, ding....blame the momma because it's not the Hydrocephalus, it's more genetic. I have an astigmatism in both eyes as well and had to get glasses in fourth grade. Although, it was because of his developmental delays that he was actually tested so at least we know now and not later. We also found out that the astigmatism isn't really making him near-sighted or far-sighted, it's just making everything blurry.

So, that's what's going on with Jackson's eyes. Next up: Speech!

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 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

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

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