Yesterday was a nice boring day. Not much went on thankfully. Today little Mr. needs to get a lot of blood taken for some labs and genetic testing, poor little one, I already feel for him. Hopefully that is the only eventful thing that we have going on.
We were told yesterday that he lost a lot of weight the night before, but it was the weight he gained from surgery and fluids so it was expected. If he didn't start gaining weight they will want to fortify more, of course... But last night he gained 30 grams! So the threat worked last night now I hope he continues on this path! If they fortify anymore I'm done doing hind milk pumping. It is a lot of work for them to be so flaky and all oooooh he isn't gaining weight lets add formula, when I'm pumping my butt off day and night... Plus my milk is on an average of 36 calories so he's getting more calories from me than the formula! Oh well, the breast milk is a touchy subject for me...
Speaking of... I missed speech yesterday, but sol is really doing a good with his suck. He is trying his best to swallow so the speech therapist is thinking in some weeks of trying to put him to empty breast and see what he does. So exciting for me, one of the bonding things I miss out on with my kiddos with this condition.
Sol has started moving his toes and feet now, sometimes it seems like he is moving his arm but I can't be sure on that one yet. I've missed pt and ot all week this week so I'm not sure what they have been seeing either but a couple people have mentioned the feet. So that's great! And exciting. Hopefully he will continue to get as much movements as possible.
This brings up something to point out for people. I just read someone asking on facebook if he is showing progress... And also some neighbors have asked me how he is doing. I realize when I say he is gaining weight, getting more movement, stable for the most part, people are automatically assuming he will be or is just like a normal healthy baby. Ok everyone needs to get that out of their heads, he will never be the normal baby you usually see because he has a huge lack of skeletal muscle. Yes he is making progress, despite us watching him almost die earlier this week, he is getting better and stronger, but not how you are thinking. When you are working with the slightest movement in the world and you start to move your toes with it, that is huge for us, but it would really mean nothing to someone who is use to all healthy babies that have muscle. It is exciting to us all the things he is accomplishing, so it is great to be excited with us, I just ask please do not confuse this with him being 100%. We do not know if he will sit up on his own, hold his head up, roll over, crawl, or even swallow on his own. We dont have the slightest clue and neither do the doctors, so don't ask what they say either! But whatever accomplishment he does make we are going to be extremely happy for!
To answer that question, yes, he is improving, I would say, and we will just keep hoping for all the improvement we can get.
Back tracking to earlier when I said he would get his blood taken.... That didn't go well, the practitioner wasn't able to get a vein so I asked her to stop and we will skip genetics for now... I can't watch him getting poked and dug into, although he was a rock star with it! He was sucking on my finger during it and hardly got upset at all. Such a little champ!
We were also told we are probably going to go up a size on his trach to help fill the huge stoma and this should be safest all around. We will see and hope it works, but also doesn't take his cry away!
Suppose that is all for today!
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