Hello everyone,
I know it has been a LONG time since we've posted anything, but things have been crazy busy at our house. Since Benjamin came home we have been loving every minute of it. I really want to thank everyone for continuing to pray for our little man and our family. Yesterday was very memorable…it was like all of the sudden he just figured out how to eat!! It made me tear up several times. We have been working on this for SO long and yesterday, it was like something just clicked....he just started to get it, he was eating and it was amazing! He’s still only doing about 15ml per feed, but it’s every feed now and about 3 x’s what he was doing before. As I am writing this, my mom called and said he just did close to 25ml!! I am praying he continues to improve on this. Overall, if he continues to keep doing well, he could ALSO be off his oxygen in less than one month! Ben is down to 0.3L of flow on his oxygen, that is 30% of the support he came home on!! He is scheduled to go down to 0.2L on Monday. This week he has pulled the tape of his face and removed his nasal cannula's multiple times….I keep joking with him asking him if he’s trying to tell me he doesn’t need it anymore. Last night after I put him to sleep, he woke up fussing and then it turned into a full screaming fit …I went in to check on him and he was screaming and satting 100%, with no oxygen on his face, he again had pulled off his tape. It was a great day, and kind of ironic also considering that yesterday was national CDH awareness day.
For now, we will continue to work diligently with him so he can be tube free asap. Mom texted me earlier and said his occupational therapist, Trish, sees fabulous changes in him since she saw him last and his 'saliva control' is getting way better, whatever that means..I just know he's sucking and swallowing now….Keep up the good prayers, they are working, indeed.
For now, we will continue to work diligently with him so he can be tube free asap. Mom texted me earlier and said his occupational therapist, Trish, sees fabulous changes in him since she saw him last and his 'saliva control' is getting way better, whatever that means..I just know he's sucking and swallowing now….Keep up the good prayers, they are working, indeed.
It has been difficult at times working on all these issues, but all this hard work will make these next victories on the horizon much sweeter. We are really proud of him and both of his big sisters. They love on him and make him laugh every day, which is awesome to see. I think it is also great therapy for him. They do not cut him much slack, he's just thrown in the mix with them. Emma loves to kiss him, hold him and sing to him and make him laugh... Elsa loves to repeat his name, kiss all over him, and sometimes just do what siblings do...pinch him or try to smack him. We've been out enjoying the weather....he's been able to see the sun, the sky, feel the wind (which he hates by the way). It's awesome, all the simple dreams we have for him are coming true.....After we tackle these hurdles, we are still working on his strength and getting his helmet mess straightened out. Ugh...don't ask. He is starting to get stronger, but we still need to work on a lot of things... One more tidbit...he now has 2 teeth as well :) There was a lot to say, and there is much more, but I'll save it for another day.
Kelly
