Great news!

After a rough night where I spent hours wondering if I should bite the bullet and take Beans in, he has turned the corner! Last night he was only tolerating half rate/half strength tube feeds and was still having bad tummy issues with them, on top of the respiratory stuff. This morning he woke up and is MUCH improved! Today his cough is minimal and not nearly so barky and he has some energy back. It's simply amazing that he's getting over this without steroids or antibiotics. One more wonderful sign his health is improving! I'm loving it!

Sick Little Beans :(

Poor little Beans has another run in with his nemesis - croup. It started yesterday and was pretty mild. Today though it's kicking his little behind. Each hour it gets a little worse. Normally we deal with it at home. At 3:00 I called the pediatrician to see if he'd be willing to call in Decadron (steroids), but they wanted to see him instead. Unfortunately they stop seeing patients at 4:00 (!?!) and we live an hour away and would have to stop and pick Little Man up on the way. At this point we're going to try and hold out until tomorrow as our other option is UrgentCare or the ER. His temp is going up about .5 degrees each hour and he's getting breathing treatments every 2 hours. Thankfully Little Man has nursing tonight so if I do need to take Beans in, at least Little Man can stay home and his nurse can even get him on the bus tomorrow if needed. Hopefully this is just a bump and we can fight this off at home.

Beach Day!!

Two posts in one day, yes. I had to share our fun time at the beach today though. First beach day of the year! :D It was just under 70 degrees and WINDY, but my two little sea monkeys couldn't resist the water. We stayed for a mere half an hour but that will be followed by many more beach days to come. Enjoy the pics!

Oh look how cute, Little Man is pulling Beans!

Oh no, wait a minute, that was Little Man pulling the board out from under Beans. Doh!

Here's my little imp, Beans, throwing a mudball at Little Man - this is their favorite beach sport ;)

New Accessories

This week has been full of new "accessories" of one type or another. A few days ago Little Man got his new orthotics. He's worn orthotics for years now, varying between ones that come just above his ankles to ones that are hidden in his shoes. Most recently he had the most support the in-shoe ones could offer. Unfortunately, they haven't been providing enough support so we had to increase the support of his orthotics. Due to his hypotonia and hyperflexibility he frequently rolls his ankles and usually has back, hip, or knee pain which we're hoping to alleviate. He was casted a couple weeks back and what I thought the orthotist was describing was something like the Richie Brace shown here: but with an insert to help provide more support. While still quite obvious, I figured it looked more sports-like than special needs.

When we picked up his actual orthotics my stomach did one of those sink to the floor things where you smile and pretend that they're great because your son is actually excited for the help but on the inside you feel like a little part of your heart just tore open. There's no denying these are special needs. :( I know it probably sounds silly but I was hoping for discrete, not in-your-face. The ankles are fully mobile up and down but won't allow side to side movement or rolling and they'll help him not hyperextend his knees as much either. The heels are built up which I think helps with the hyperextension too (?). The insert part you can kind of see in this pic, it's the front mose strap and the plastic that wraps around his foot. The outer orthotic goes under and up the side of the inner and then up his leg fairly close to his knee.

Shoes are quite a feat to find that fit over the orthotics, but we've found skater type shoes before. I was shocked when the orthotist said Little Man's insurance would cover special shoes that are extra deep to accommodate these. Unfortunately, they ordered the wrong size so they had to reorder them. They should get in this week and then he'll start wearing his new orthotics (AFOs for short) an hour at a time building up to wearing them all day.

I know they'll help him. I know he's been hurting and having tons of back and leg pain. I know he loves them and is happy with them. I even know Beans is jealous because he wishes he had some (he does not need orthotics of any sort, much to his dismay). But, the mommy part of me was glad they had to reorder the shoes to delay him wearing them. That mommy part secretly wishes we could just ignore the whole issue. But that same mommy part doesn't want her boy to be in pain any longer either. What a choice. BUT (yes, another but), the important part is that Little Man likes them and needs them and that's what all these mommy parts have to keep in mind.

I do have a little brag to tell you about. This past week was standardized testing week for both Little Man and Beans. Beans worked very hard on his tests each day and we're quite proud of what he's done. Little Man really, really struggled with this test last year. This year was a whole different story. His teacher did the test 1:1 with him and he has all the accommodations they allow (extra time, extra breaks, some parts can be read to him I think, alternate pencil, and not sure what else). Well this year, this amazing year, Little Man was compliant, paid attention, and on Thursday his teacher said he even requested a break when he needed one! HUGE steps for him! We won't have the results of either one for some time, but really, the results aren't the important part when you're dealing with ESE (special ed). Just the fact that they were both able to do the test is reason to celebrate!

Finally, I must share with you Beans' newest accessory. He's been wanting to take piano lessons for months. A special someone bought him this keyboard yesterday. He was so excited that he's already learned "Twinkle, Twinkle." Now presenting, for your viewing pleasure, World Famous Pianist - Beans :D