This guy officially has his SMO’s (Supra malleolar orthosis) and AFO’s (ankle foot orthosis). These are designed to give him more stability in his ankles and legs to assist with standing. So far he loves them. We have already seen a huge improvement in his willingness to push up to attempt to stand. Our hope is these will give him the strength and support he needs to develop his leg muscles.
Last week we got the results of his kidney test. It was a good news/bad news report. Good news? It hasn’t gotten worse. Bad news? It hasn’t gotten better. We were hoping for some improvement, but that wasn’t in the cards. We will meet with the urologist to discuss next steps. It could be anywhere from back to antibiotic prophylaxis to surgery. The urologist will chime in and help us to decide.
We celebrated is 2nd birthday on Saturday. He loved the candles and hated the cupcake. He totally can’t be my kid... who doesn’t love cupcakes?! We might be able to blame his molars for his attitude, though. Turns out this guy decided to get his 2 year molars ON his second birthday. That’s fun for all of us. Not.
Wyatt met Santa today! It was extra special because Wyatt has a special connection to this Santa. He looks a lot like a dear friend of ours (if you get my drift...) which made the picture taking much easier. No tears and lots of giggles.
He will have a scope completed this week to check his airway. ENT will chime in and report to pulmonologist about what they find. The current hypothesis is there may be something anatomically impacting his airway, leading to the insane sleep apnea. Typically kiddos with sleep apnea don’t require BiPAP (they may require CPAP though) and definitely don’t require the high pressures he currently receives. In addition to this, we are waiting to hear about a date for his next sleep study.
We remain hopeful that we are turning a corner with his health and he continues to remain stable. (Hopeful but not delusional... we still have our hospital bags packed just in case)
The jury is still out on his feelings about snow. He hated laying in it, but didn’t mind mama holding him. We enjoyed about 3 inches of snow on his birthday. He wasn’t as thrilled as I was. This Michigan mama enjoys snow.
Here’s to a great week, filled with some answers and continued progress in therapy!
So happy that the braces are making a difference for him, but don't think the bootie/slippers will fir over them. Hopefully he is still getting use of them when he's not wearing the braces. He is such a precious lil guy, and love the pics of him in the snow. Continue prayers for him as he continues to makes strides towards a bright future. You are such a special mom to him and both so lucky to have each other! Enjoy and Merry Christmas to your family Lori. Hugs Kim
ReplyDelete