Lots to talk about!

Lots to talk about today.
Its been a long week, appointments every day. Most were appointments that were planned before Arina came home, some were hers. I don't think I've sat down once since Monday!
First the better appointments. Jax went to trach/vent clinic on Wednesday. He's doing good from a trach standpoint. Its clear he needed that trach, and needed the vent even more. Respiratory-wise, he's doing good! Our beloved Kris gave us some new, great attachments to make life easier with the vent. I hate the attachment that has the suction on it. It just gets in his face, and I don't use that suction anyway. This new blue one swivels, so if he turns, it turns with him. We've used it one night, and we love it already!
The new


The old


Also, he weighed over 25 lbs at the clinic appointment. I immediately called Lisa and told her we need to figure out what is going on with this puffiness. He has weighed on average 22 to 23 lbs probably for the last two years. He just doesn't gain weight good. Now all the sudden he's jumped to 25, and its all in his face and chest. So the plan with him is to get an MRI of his neck and chest. That is the least invasive way to see if he has any new clots, or if his SVC is narrowed off again. I need to call and get that scheduled.

Now on to the princess. We've been deciding what to do with this girl and her aspiration issues. My ped talked to one of the top speech therapists in the state, and she doesn't think we can get by without the tube. We will talk in depth tomorrow with her about what to do, but I think we are going to do a g-tube. The speech therapist said that it will take her at least a year of hard work to get her oral skills where they need to be before she can take liquids. An NG is not feasible for that long. Plus, there are a million reasons not to do the NG. They cause ear infections in our tiny DS ears, they cause oral aversion just for the fact that they can feel that tube down their throat. The g-tube is just the best option for now.
I'm really struggling with this. Although we knew adopting a DS child, that these things come with it. We just hoped that we would not have to deal with this with her. Really, its not a big deal. Its something so easy and fixable, and not permanent. Its just that we are having so much fun feeding her bottles. We are not sure right now what she can take by mouth. We are hoping to keep feeding her baby food, and just tube the liquid. Speech therapist also said that we can't thicken all her liquids as thick as she would need it. She needs to get some free water. Ultimately we will do another, more in depth swallow study to see exactly what we can continue to feed our princess orally. But I'm really sad about this!
I don't know if it freaks me out because I find we are going down Jax path. Although I know that is ridiculous! She will continue to grow and do motor skills with a feeding tube, I'm just freaking out I think!
Plus, she woke up with a fever this morning, and has had it all day. If this turns out to be pneumonia, then we know this toobie is needed.
I do think Jax see's his new sister. I find him looking at her when they are on the floor together. She has only made him cry once so far, and I found spit up on his head, so I would cry too if my baby sister barfed on my head!!