Tuesday, September 16, 2014

Max and his Scooter

Max has started to ride his scooter on his own. You can tell he is whining about it all but he is willing to do it. Awhile ago, his daycare mentioned that another parent taught him to kick a soccer ball. While he can kick a ball around he does so with mostly a straight leg (he also runs with straighter-than-they-should-be legs). I figured a scooter would help him understand the functionality and range-of-motion of his legs and how it can hinge at the knee and he can push. Here's to hoping this works!


Untitled from Amber Elia on Vimeo.

Thursday, September 4, 2014

And just like that...Max is eating solids!

After years and a lot of work and some struggle, it's like everything just "clicked"! Max is eating solid food. It will be 1 week tomorrow that Max's meals have consisted of solid food items broken into bite-size pieces at the most. None of his food touched a blender!


Saturday, August 9, 2014

Progress with Eating

It's been a while since I really shared information as it relates to Max, his blindness, and some of our challenges. Eating/feeding has always been a challenge because chewing is a visually learned skilled. After years of struggling trying to move Max past a pureed texture, numerous feeding workshops, and trying to visit a feeding clinic I think we have turned a corner.

A friend has pointed out to me how I give in to Max too quickly. Here I thought I was one tough momma, he couldn't manipulate me but then during feeding sessions I fold like a bad poker hand. So, after paying attention to how I act and react over the past two/three weeks, Max has been challenged with bits of solid food every night. He has eaten ground beef (from tacos), chocolate chips, bits of kiwi, bits of cookies, lots of pieces of chicken, and puffs.

When we first started this little experiment I kept our normal routine at feeding. It consisted of me having the music going in the house and getting through his normal pureed meal then introducing a solid piece of whatever for as long as he'd tolerate. After a couple nights of struggling and Max being preoccupied by a full stomach and music, we shut the music off and Max had to work for the music or toys he wanted afterwards. This brought on a change in his behavior and his willingness to try solid foods. He was willing to take more bites of solid pieces (usually no more than 4 bites) and while there was a lot of gagging at the beginning after a couple of weeks the gagging has started to subside.

This week while I have been making Max's dinner I started giving him piles of puffs while he waits. There's no music, no cup, nothing but the pile of puffs. At the beginning of the week, he wasn't too interested in taking the puffs without being prompted. However, by Thursday evening I sat the pile of puffs in front of him while I made his dinner and when he received his dinner he took a few bites and then pushed his bowl away to finish the pile of puffs! Max willingly went for the solid food! : )

I don't think there's anything left to say but...WOOHOO!

Wednesday, July 30, 2014

Dog Sitting

Max and I are dog sitting for a close friend this week. It's been an experience! While I have been challenging Max with more texture in his food (he's doing great with it!!!) both Max and the dog are challenging every bit of my stamina and patience.

Max has been getting progressively whiny, and the dog has been getting progressively jealous of the attention given to Max. Needless to say, I am exhausted! Not to mention, I gave up coffee almost two weeks ago because of migraines due to medicine and too much caffeine. I have been feeling better but I have definitely been jonesin' for some joe--luckily, decaf (not quite the same but good enough) has calmed my cravings. So, lots have been going on and it's been a bit crazy 'round here.

: )

Friday, July 25, 2014

Working for Music

This week I was told about the numerous ways I give into Max. It wasn't something I realized until I was being called out as it was happening. Color me surprised! So, now instead of playing music all the time (like some people play their TVs) Max is going to work for the songs he would like to hear (for the most part). I have also been challenging him with solid foods this week. So far, he has had a piece of solid food with every meal ranging from bits of cookies, chocolate chips, taco meat, kiwi, bread, etc. He definitely doesn't appreciate this challenge but he isn't fussing the way he did last year.

Anyway, the video below is a preview of Max starting to braille "Wagon Wheel" so he can listen to his favorite song (of the moment). We got through "wagon" but "wheel" was a wreck and he had a tantrum. Honestly, since getting the SMART Brailler the tantrums have been non-existent. I think he is rejecting how much I am beginning to challenge him. We will see who prevails! I sure hope it's me. ; )


Brailling words for music from Amber Elia on Vimeo.

Thursday, July 3, 2014

Happy (Soon-to-be) 4th of July!

As everyone is getting ready to celebrate tomorrow, I just wanted to say Happy 4th of July! Party hard but party safe!

Max and I are both sick, I have strep and he might have strep...so it's safe to say we will be staying away from civilization for a few days.

XO

Sunday, June 29, 2014

Diagnosis Update

Last week, Max had an annual visit at the National Eye Institute. This appointment over the past three years has ended the same...There is no response, continue to assume he is totally blind. We'll see you in a year. *Those are not the exact words but it's the gist and that's enough.*

So, the night before the visit I was thinking about how I wasn't preparing the way I did the other years. I would scour the internet for questions I haven't asked the doctor yet and prepare a binder full of information (notes of past doctor visits and progress reports from EI). This year I just grabbed a beer and turned on Netflix and tried to relax as much as one can before such a visit.

The morning of the visit I had an awful feeling I couldn't shake. Max was really well-behaved during the visit and loved the sliding doors to the clinic so much that every time he heard the creaking from the opening and closing he would go into laughing fits! The entire room was starting to chuckle at one point. It's those moments that make such visits easier to bear.

So in what I thought was going to end up being a visit like the years before...we ended up hearing that Max might have a missing diagnosis. Max sat really well for the doctor once his pupils were dilated, and his optic nerves are not as small as the MRI report states (the MRI was completed when he was 6 months). The doctor asserts that the optic nerves are slightly smaller than average, and given their size and Max's non-visual response there may be a missing diagnosis and likely something wrong with his pupils...

We left the visit knowing two things: NEI is requesting Max's medical records from the other places we have been to, AND we are to schedule his next appointment in 1 year...

I was really distraught after that visit and whelp, it still doesn't feel well but it's okay! He's happy regardless. : )