Not a fun day at doc apts :(

Well we had originally just had ot (occupational therapy) and pt (physical therapy) apts today but after meeting with ot and realizing there was nothing on there end they could to help Arwen drink more liquids we then moved on to her neonatologist. After speaking for awhile and realizing Arwen's chronic constipation issues, not drinking enough liquids on a consistent basis, dropping weight, and bladder issues were getting worse they decided to see her in the clinic today. So after a long day of getting an xray, seeing dietitian, neonatologist, and nurses they came to the conclusion that since she struggles with not drinking enough on regular basis then it wouldn't be best to start a cleansing bowel program(she is backed up horribly) and take the chances of her becoming dehydrated and lose more weight. So for the next few weeks while she gets her bowels on a track with her program and starts new bladder meds..they are keeping the feeding tube in to help her get through that. she will eat and drink normally, but whatever she doesn't drink will be put in her feeding tube. so right now she drinks 14-16 oz but has to be drinking 32oz..so looks like we will be using the tube more often than i would like. but hopefully once she gets cleaned out she will want to eat and drink more on her own without tube.

i am pretty freaked out to say the least about inserting the tube and checking it..and whew it takes awhile to syringe feed through the tube. its for sure a 2 person job to hold her still, but unfortunately I am home alone during the day and will be doing it alone. So I am really going to be on my knees praying for God's strength and wisdom.

She has tried pulling it out a few times, but praying she keeps it in all night so i don't have to do it on my own tomorrow morning :)

She keeps it in at all times unless she pulls it off or it is not the correct spot. (in lungs vs the stomach)

The enema is a whole battle in and of itself as well..not so easy with a cranky 1 year old who can't control sphincter. (sorry so graphic lol..but welcome to our world haha!)

She didn't like it for sure, but has to have it done every night since she is so backed up. It's a bittersweet thing that she can't feel down there..so that way I don't feel as bad when I am doing it.

After all the fun today we had to go to hanger to get new afo dynamic braces (carbon fiber soon to help with her planter flexion) but soon realized with those, smo's (her braces she has protecting her ankles and helping her toes) and shoes..it's just too much weight for her feet. plus her feet are turning in way way to much. so next step is figuring out new braces that are lighter weight, new shoes, and getting a hinged brace on her knee to help the feet from turning in. so we will go back on may 16th to asses the tube and bowel situation and meet with hanger and rehab to figure out braces.

I pretty much just want to scream and run away, but I know all of this is helping her get better and God is in control and always has His hand upon her and us. thankfully it won't be a long term thing hopefully.

She was such a trooper today! Waking up 3 hours before she normally does (she has been sleeping 14+ hours again which is another mystery to the doctors so may have to do sleep study lol..always something right?) , spending 7+ hours at the hospital, eating lunch at 3pm, getting feeding tube, new braces, and lots of doctors everywhere...she is spent and so is mamma :)

I know that sounds like a lot and i do feel pretty overwhelmed to say the least, but I do know God is in control and I continue to put my trust in Him only and not man.

We appreciate your prayers, love, and support. It's going to be a rough few weeks, so please just pray that Arwen adjusts well and for strength for Richard and I