Thursday, May 31, 2018

To do list.

I have many deadlines to hit this week, and so much other things to do, not to mention the two new chicks in our house to take care of, So... today must be a day where I stop doing all of that and take 10 mins out of my day and write a blog. To think just this morning I was complaining to May that she is always avoiding doing things that she doesn't like to do, I wonder where she got that from!

There is way too much to get caught up on since March, but briefly putting it, Sol get RSV towards the end of the month into April, (second time this year), we even broke our no hospital streak of 16 months I think? and had an overnight stay with this last spout of RSV. It was terribly disappointing especially because we had scheduled a swallow study the next week and I knew he wouldn't be up for it by the time it came. During his RSV sickness, we ended up getting like, 28.5" or something ridiculous like that, of SNOW in APRIL. This sucked because Sol was still struggling with his oxygen and I literally could not get out of our driveway. Besides missing the Go baby Go event, Sol at least didn't need to go back to the hospital and recovered well by the time the roads were clear.

Shortly after that, he developed what would be an ear infection if he wouldn't have gotten his tubes but in, but nevertheless, he was really uncomfortable and ended up needing some drops to help his ear get better.

Not but a week after that, he got a sinus cold and that seemed to take FOREVER to get over. We spent so many nights on the couch with him, and he spent so many nights coughing and coughing and coughing, and of course they do nothing for coughs so we all had to suffer through this. By the time he was starting to get a little better from this sinus cold, he developed a trach infection and then stopped sleeping all together because he was in so much pain. I was ready to rip my eyes out, I was so tired, not to mention of course I got the sinus cold because I wasn't sleeping. Anyway, I gave a quick call to his doctor and got him some antibiotics and it was in a couple days that he was doing So much better. But while all of this was going on, I had to reschedule the swallow study about 3 times. It was insane!

Yesterday, though, we finally went to that swallow study. I was pretty nervous I thought for sure I wouldn't be able to sleep that night just because he never got back to where he was with eating before he got RSV. The last couple of times that we tried feeding him at home, he wasn't really into taking any of it so I had a suspicion that he may not participate at the swallow study.
We got there and got him all set up, his speech therapist from home was there, he was very confused by all of this but we sat him in the chair anyway. They did some explaining of how the test would go, I got to feed him (I had him pick what color bowl he wanted that morning and that really made him excited to see that same bowl when we got there) But I was getting so anxious and wanting to just get on with it before he freaked out. Finally we were able to start, I couldn't watch the video because I was feeding him, but Everyone was cheering for him. He was eating like a champ! He had purees and honey thickness and nectar thickness and he did the same thing with all of them, which means he can keep practicing eating all of those types of textures. He did 'penetrate' two times, they explained so the food started to go towards the airway but with his next swallow it went right where it was suppose to go. So we do have to be careful feeding him, but we were only giving him food by mouth one time a day and only applesauce and in a very controlled environment. Because he didn't aspirate at all during the study, we can now feed him every day but still small amounts and we still need to be pretty careful, but the fact that he has reach this goal that we have set for him, and he set for himself really, it is just amazing! So very exciting. The drive home all I could think about was what food I would make for him next to eat! Basically anything can be blended down in my vitamix, so the possibilities are endless! He had almond chocolate milk this morning, and it is just so fun seeing how excited he gets with being able to explore food more now.

It was a pretty great day! The rest of the week has been pretty hectic but at least we had yesterday! 

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