One less piece of equipment

It's a big one and we actually still have to have it around at all times but at least Tater doesn't have to be hooked up to it....

Tater has been cleared to stay off the vent during waking hours! He only has to use the vent when he's asleep or sick! WOOHOO!!!! YIPPEEE!! He had Vent Clinc last week and the doc said Tater was doing so well, to go for it. And he switched Tater to an inhaled steroid instead of the steroid we were giving him through a nebulizer and bedtime is super easy and quick, well easier and quicker than it was. Everyone was pleasantly surprised at how big he's gotten and this is the first doctor's visit ever where his weight wasn't a concern and his feeds weren't changed. The kid who was labeled "failure to thrive" when he was an infant is now taller than 90% of boys his age and weighs more than 50% of kids his age. The child is big. He's actually taller than Toser was at this age-weighs a bit less, but he's taller. We thought Toser was huge. We grow 'em big here on the Mountain.

Never have we left an appointment feeling hopeful and giddy. We are definitely feeling guardedly hopeful. I just can't let that little bit of guard down but at least there's hope attached to it now.

Tater Crawling!!

He's trying!

And please excuse the lack of clothing on the Toser. He's currently on sabbatical from wearing garments other than undies.

Crawling

Tater is crawling! At 22 months, the child decided to crawl. All by himself. We had moved on to working on walking so weren't focusing much on him being in the "quad position," or hands and knees. Two weeks ago he started getting on all fours and rocking back and forth. Last week decided to coordinate arms and legs and go! Of course he won't do it when I try to record him. It's a very slow, determined crawl and he doesn't make it very far when he does go but this is a great milestone for him. We never expected him to crawl because the tone in his arms is so low. His legs are a little better off so the doctors were always more optimistic about walking and said crawling could be skipped. Tater decided otherwise.

Tater's underlying condition, the one that is caused by some unknown disorder and is the cause for many of his other, secondary issues, is low muscle tone, or hypotonia. He has all of muscles and can use them normally, but for whatever reason, there is a disconnect between his brain signals and those muscles. A normal muscle will retract when an outside force (gravity, another person) pulls against it. Tater's muscles don't retract immediately, if at all. He's very floppy. He looks like any other kid but if you hold him, you can tell he's not right. It's kind of like the opposite of someone having very toned arms. If they're toned, arm muscles are always engaged even if they're not doing an activity. Tater's muscles are hardly ever engaged. He's gotten stronger these last few months but strength doesn't matter much when the muscles aren't working properly in the first place.

All that to say any milestone like crawling is more than HUGE. I'm very proud of the little booger. The little booger who is constantly getting in trouble for hitting Toser. I guess you can't get one normal without getting them all.

And about the vague surgery coming up. We'll schedule that in April and it will probably happen in May so we have time to prepare. I'm grateful his doctor was willing to wait until RSV and flu season are over to do the surgery.

In addition to the crawling, we're all doing well here. Sicknesses are abating and we seem to be in a somewhat normal place. Of course, now that I said that, some ball is going to drop. We'll just enjoy life until it does.